Important Questions for Hospice in the Next Century

Appendices



TABLE OF CONTENTS

APPENDIX A. Literature Review Methodology
APPENDIX B. National Hospice Organization's Sample Contract
APPENDIX C. Medical Guidelines for Determining Prognosis in Selected Non-Cancer Diseases and Hospice Enrollment Criteria for End-Stage Dementia Patients
APPENDIX D. Wisconsin State Guidelines for Medicare Hospice Care Provision in the Nursing Home
APPENDIX E. Acknowledgement List


APPENDIX A. LITERATURE REVIEW METHODOLOGY

OVERVIEW

The purpose of the literature review was to update Mor and Allen's 1987 hospice review (Mor & Allen, 1987) by identifying subsequent completed and ongoing hospice research, and by documenting research findings relating to the utilization, cost and quality of hospice care. A focus of the review was the Medicare hospice benefit in the nursing facility. An extensive search was conducted utilizing online databases and Internet resources. Additionally, unpublished work was solicited from leading health services researchers. The complete methodology including search strategies and subsequent results are detailed below.

SEARCHES CONDUCTED

Initial online research databases searched for this review included Medline (medical research), Psychlit (psychological research), Sociofile (sociological research), Econlit (economic research) and ERIC (reports). First, a search using the key word "hospice" was employed yielding nearly 3,000 records. This search was refined using the following set of key words in addition to the key word hospice: Medicare, Medicaid, cost, utilization, expenditure, quality of care, quality of life, outcome, grief or bereavement, depression, pain or symptom control, patient or family satisfaction, and. All abstracts found with these key words were reviewed and articles were selected based on their relevance to the goals of the current project and the following criteria: (1) research published after Mor and Allen's 1987 review; (2) research conducted in the U.S.; (3) analytic methods were employed.

The National Hospice Organization (NHO) also provided us with a 1994 bibliography of all identified literature from a variety of databases. Bibliographies from databases that were not initially searched were examined. These databases included Ageline, Cancerlit, Family Resources, CINAHL, Health Periodicals, Religion Index, Sociological Abstracts and Dissertation Abstracts. Finally, a HealthSTAR search (policy and administrative issues in health care) was conducted using hospice and economics cost savings, health expenditures, health care costs, reimbursement mechanisms and cost-benefit analysis.

In addition to online database searches, Internet searches were performed. First, searches were conducted in government web sites for relevant reports, publications, research or demonstration projects. These sites included the Health Care Financing Administration and the Office of the Inspector General. Second, research funded from the following agencies were searched using "hospice" as a keyword: National Institute of Health (NIH), Agency for Health Care Policy and Research (AHCPR), The Robert Wood Johnson Foundation Last Act Initiative, and the Open Society's Project on Death in America Campaign. When relevant research projects were found, the principal investigator was contacted and asked to describe the purpose, current status and findings of the project if available.

Finally, after reviewing the current abstracts and also the previous references reported in Mor and Allen's review, a list of 20 leading health services researchers in hospice care were identified. These researchers were contacted by letter and asked to provide information about any current research (funded or not funded) that they were pursuing relating to hospice care.

RESULTS OF SEARCHES

The results of the online database search are shown below (Table A.1). Because no program was used to sort the abstracts and identify duplicates, the number of abstracts identified for each category may be an overestimate. The limited number of articles identified for inclusion in the literature review was not surprising given the criterion employed. Indeed, in their final bibliography, Mor and Allen reported only 13% of their total bibliography contained analytic papers and only 7% were based on outcomes of hospice care. Additional references (10) were found in the NHO bibliography and 3 were subsequently used in the review. Similarly, HealthSTAR search yielded an additional meeting abstract and one article.

TABLE A.1. Search Results Using On-line Databases
Key Word(s) Hits   Articles Reviewed     Met Criteria  
Hospice and   2,915   N/A N/A
Cost 155 16 11
Utilization 124 11 8
Expenditures 14 2 1
Outcome 91 2 2
Quality of Care   127 7 5
Medicare 155 36 23
Medicaid 22 9 6
  114 5 5
TOTAL 802 88 61
NOTE: Online databases included Medline, Psychlit, Sociofile, Econlit and ERIC. Some "hits" may be duplicated due to the use of multiple databases.

Internet searches provided varied materials including reports, background information and funded grants. The numbers of identified grants are shown on Table A.2 below. Under the Department of Health and Human Services, the Office of the Inspector General search yielded information on three relevant audits that were conducted under Operation Restore Trust. These audits and their findings were included and discussed in the literature review.

TABLE A.2. Results of Internet Searches for Grants
Funding Agency   Reviewed     Met Criteria  
for Inclusion
National Institute of Health 72 1
Agency for Health Care Policy & Research 10 3
The Robert Wood Johnson Foundation Last Act Initiative   27 3
Open Society's Project on Death in America Campaign 81 4

Finally, of the 20 health researchers that were contacted by letter, 10 return letters were received. Of these, 2 researchers gave us additional information to include in the review on recent research they were conducting.


APPENDIX B. NATIONAL HOSPICE ORGANIZATION'S SAMPLE CONTRACT1

INTRODUCTION

Attached you will find a sample nursing home contract. Please be aware that this document is meant to be utilized after your organization has made the decision to deliver hospice care in nursing homes.

BACKGROUND INFORMATION

There are currently more than 1.5 million persons living in nursing homes across the United States. One in four women age 85 or older lives in a nursing home, compared to one in seven men in the same age group. Of Americans age 65 and older, 43% will spend some time in a nursing home before death.

In the past few years, increasing attention has been focused on establishing relationships between hospices and nursing facilities. The Omnibus Reconciliation Act (OBRA) of 1986 first established that hospice care could be provided in a nursing home under the routine home care level. With the passage of OBRA '89, the financial disincentives were removed. The regulatory environment improved with OBRA '90, known as the Nursing Home Reform Act, when nursing homes were required to meet standards similar in philosophy to hospice.

As these changes have occurred, the National Hospice Organization has received an increased number of requests for a sample nursing home contract. Medicaid requires that a contract is in place before hospice services are provided. In response to the needs of its membership, NHO sought legal assistance in developing a generic contract. Providers are advised to utilize this tool as a guide and to make modifications in relation to state laws and their individualized needs under the direction of local legal counsel.

FACILITATING WORKING TOGETHER

Although the pieces have now fallen into place from a financial, regulatory, and legal standpoint, establishing a mutually beneficial relationship is still difficult. Procedures need to be agreed upon for the following areas:

The above list of issues to be considered in negotiating relationships with nursing facilities is not all inclusive, but rather a sample of the types of issues to be examined.

The intent of this guide to implementing a nursing facility contract was to focus the hospice provider on issues of primary concern. Additional important considerations are your state nursing home regulations and, where applicable, the hospice licensing law.

There are many hospices throughout the United States that have successful programs in place and are willing to provide technical assistance. It is through the sharing of experiences that we will be able to refine the integration of hospice services within this health care setting.

NATIONAL HOSPICE ORGANIZATION ("NHO")

SAMPLE

SERVICE AGREEMENT BY AND BETWEEN A HOSPICE AND A NURSING FACILITY*

NOTICE

THIS FORM OF AGREEMENT IS MADE AVAILABLE TO NHO MEMBERS SOLELY AS AN ILLUSTRATION AND EXAMPLE OF A SERVICE AGREEMENT BETWEEN A HOSPICE AND A NURSING FACILITY. NO REPRESENTATIONS OR WARRANTIES ARE MADE BY NHO OR BY ANY NHO REPRESENTATIVES OR AFFILIATES AS TO THE APPROPRIATENESS, ACCURACY, OR COMPLETENESS OF THE TERMS AND CONDITIONS INCLUDED IN THIS FORM OF AGREEMENT. THIS FORM OF AGREEMENT AND THE TERMS AND CONDITIONS CONTAINED HEREIN MAY NOT BE SUITABLE DOCUMENTATION FOR EVERY CONTRACTUAL ARRANGEMENT BETWEEN A HOSPICE AND A NURSING FACILITY. SHOULD AN NHO MEMBER DESIRE TO UTILIZE THIS FORM OF AGREEMENT, IN WHOLE OR IN PART, IN CONTRACTING WITH ANY NURSING FACILITY, REVIEW OF THIS FORM OF AGREEMENT AND APPLICABLE FEDERAL AND STATE LAW AND REGULATIONS BY SUCH MEMBER'S LEGAL COUNSEL IS ADVISED. PROVISIONS OF THIS FORM OF AGREEMENT THEN SHOULD BE MODIFIED, BY OR IN CONSULTATION WITH LEGAL COUNSEL, TO REFLECT SUCH REVIEW AND THE PARTICULAR CIRCUMSTANCES AND NEEDS OF THE NHO MEMBER.

*This service agreement incorporates provisions of the nursing facility regulations that went into effect October 1, 1990.

Table of Contents

I. Recitals
II. Definitions
III. Services to Be Provided by Hospice
IV. Services to Be Provided by Nursing Facility
V. Records
VI. Designation of Liaison; Administrative Appeals
VII. Representations, Warranties and Covenants of Hospice
VIII. Representations, Warranties and Covenants of Nursing Facility
IX. Quality Assurance
X. Confidentiality
XI. Use of Name or Marks
XII. Reimbursement
XIII. Insurance and Indemnification
XIV. Term and Termination
XV. General Provisions

THIS AGREEMENT (the "Agreement") is made and entered into this ___day of _______, 19__, by and between [full legal name of hospice], a [insert state of incorporation] corporation ("Hospice") and [full legal name of nursing facility], a [insert state of incorporation] corporation ("Nursing Facility").

I. RECITALS

1.1   Hospice is a patient-and family-centered program engaged in the provision of interdisciplinary services for the palliation and management of terminal illness.

1.2   Nursing Facility is skilled and experienced in the operation of a nursing facility and in the provision of long term care services to its residents, including certain assistance with activities of daily living. Nursing Facility is certified to participate in the Medicaid program and has established policies and protocols for the care of terminally ill patients consistent with those of Hospice.

1.3   The parties contemplate that from time to time individuals residing in Nursing Facility will need Hospice Services as defined in Section 2.6, and individuals previously accepted into Hospice will need care in Nursing Facility. Hospice and Nursing Facility desire by entering into this Agreement to make it possible for individuals with terminal illness to receive needed Hospice Services in conjunction with Nursing Facility Services (as defined in Section 2.10).

II. DEFINITIONS

2.1   "Attending Physician" means a doctor of medicine or osteopathy, duly licensed under applicable state and local law and regulations, who, upon the election of Hospice Services, is identified by a Hospice Patient (or such patient's legal representative) as having the most significant role in the determination and delivery of such Hospice Patient's medical care.

2.2   "Effective Date" means the date of execution of this Agreement.

2.3   "HCFA" means the Health Care Financing Administration.

2.4   "Hospice Patient" means an individual who elects, directly or through such individual's legal representative, to receive Hospice Services and is accepted by Hospice to receive Hospice Services.

2.5   "Hospice Physician" means a duly licensed doctor of medicine or osteopathy employed by Hospice to render physician services to each Hospice Patient, as necessary, in accordance with the applicable Plan of Care.

2.6   "Hospice Services" means those services provided to a Hospice Patient for the palliation and management of such Hospice Patient's terminal illness, either directly or under arrangement by Hospice, as specified in the Plan of Care. Hospice Services include nursing care and services by or under the supervision of a registered nurse; medical social services provided by a qualified social worker under the direction of a physician; physician services to the extent that these services are not provided by the Attending Physician; counseling services (including bereavement, dietary and spiritual counseling); physical therapy, occupational therapy and speech-language pathology services; home health aide/homemaker services; medical supplies; drugs and biologicals; use of medical appliances; and inpatient care when needed for pain control, symptom management and respite purposes.

2.7   "Interdisciplinary Group" means the Attending Physician and certain Hospice employees which employees shall include, without limitation, the following individuals: (a) a doctor of medicine or osteopathy, (b) a registered nurse, (c) a social worker, and (d) a pastoral or other counselor.

2.8   "Medicaid Eligible Residential Hospice Patient" means a Residential Hospice Patient who either (a) is eligible for Medicaid benefits in a state which has a hospice benefit and who has elected to receive the state's Medicaid hospice benefit or (b) is eligible for both Medicaid and Medicare Part A benefits and who has elected the Medicare hospice benefit.

2.9   "Medicare Eligible Residential Hospice Patient" means a Residential Hospice Patient who is eligible for Medicare Part A benefits and who has elected to receive the Medicare hospice benefit.

2.10   "Nursing Facility Services" means collectively Nursing Facility Room and Board Services and Other Nursing Facility Services.

2.11   "Nursing Facility Room and Board Services" means those personal care services provided by Nursing Facility as specified in the Plan of Care for a Residential Hospice Patient, including, but not limited to, providing food (including individualized requests); assisting in activities of daily living, socializing activities, and in the administration of medicine; providing and maintaining the cleanliness of the Residential Hospice Patient's room; supervising and assisting in the use of any durable medical equipment and therapies included in the Plan of Care; providing laundry and personal care supplies; and providing the usual and customary room furnishings provided to Nursing Facility Residents, including, but not limited to, beds, linens, lamps, and dressers.

2.12   "Other Nursing Facility Services" means all items and services provided by Nursing Facility which are not related to treatment of the Residential Hospice Patient's terminal illness but specified in the Plan of Care.

2.13   "Plan of Care" means a written care plan established, maintained, reviewed and modified, if necessary, at intervals established by the Interdisciplinary Group, which includes (a) an assessment of each Hospice Patient's needs, (b) an identification of the Hospice Services, including management of discomfort and symptom relief, needed to meet such Hospice Patient's needs and the related needs of the Hospice Patient's family, (c) details concerning the scope and frequency of such Hospice Services, and (d) details concerning the Nursing Facility Services to be provided to the Hospice Patient. The Hospice and Nursing Facility will jointly develop and agree upon a coordinated Plan of Care which is consistent with the hospice philosophy and is responsive to the unique needs of the Residential Hospice Patient and his/her expressed desire for hospice care.

2.14   "Private Pay Residential Hospice Patient" means a Residential Hospice Patient who is not eligible for the Medicare hospice benefit or the Medicaid hospice benefit or, if so eligible, has revoked or elected not to receive the Medicare hospice benefit and/or the Medicaid hospice benefit, as the case may be.

2.15   "Purchased Hospice Services" means those Hospice Services specified in Exhibit B that Hospice has contracted with Nursing Facility to provide.

2.16   "Residential Hospice Care Day" means a day on which a Residential Hospice Patient receives Nursing Facility Room and Board Services.

2.17   "Residential Hospice Patient" means a Hospice Patient who resides in Nursing Facility.

2.18   "Uncovered Items and Services" means those services provided by Nursing Facility which are not Hospice Services, Nursing Facility Room and Board Services or Other Nursing Facility Services, including, but not limited to, telephone, guest trays, and television hookup.

III. SERVICES TO BE PROVIDED BY HOSPICE.

3.1   Admission to Hospice Program.

  1. If a resident of Nursing Facility requests the provision of Hospice Services, Hospice shall perform an assessment of such resident and shall notify the Nursing Facility, either orally or in writing, whether such resident is authorized for admission as a Residential Hospice Patient. Hospice shall maintain adequate records of each authorization of Hospice admission.

  2. On or prior to the execution of this Agreement, Hospice will provide Nursing Facility with its current criteria for admission. Hospice will promptly provide Nursing Facility with any modification to these criteria.

3.2   Design and Maintenance of Plan of Care.

  1. Nursing Facility Residents. In accordance with applicable Federal and state laws and regulations, Hospice shall coordinate with Nursing Facility to develop a Plan of Care for each new Residential Hospice Patient. Hospice shall furnish Nursing Facility with a copy of the Plan of Care.

  2. Non-residential Hospice Patients. Promptly upon admission of Hospice Patient, who has not been residing in a nursing home, to the Nursing Facility and consent of the Hospice Patient (or his/her legal representative), Hospice will furnish Nursing Facility with a copy of the then-current Hospice Plan of Care. In coordination with the Nursing Facility, Hospice shall promptly modify the Plan of Care, as necessary, to accommodate Hospice Patient's change in residence.

  3. Modifications. At intervals established by the Interdisciplinary Group, the Interdisciplinary Group will review and modify, if necessary, the Plan of Care. The Hospice will consult and coordinate with Nursing Facility, as reasonably necessary, with respect to any modification to the Plan of Care, and will provide the Nursing Facility with any modification to the Plan of Care.

  4. Monitoring. Hospice will promptly inform Nursing Facility of any identified change in the condition of a Residential Hospice Patient which requires supplementation, modification or alteration of the Plan of Care.

  5. Physician Orders. All physician orders communicated to Nursing Facility on behalf of Hospice in connection with Plan of Care shall be in writing and signed by the applicable Attending Physician or Hospice Physician; provided, however, that in the case of urgent or emergency circumstances, such orders may be communicated by the Attending Physician or the Hospice Physician orally and confirmed in writing thereafter. Hospice shall maintain adequate records of all physician orders communicated in connection with the Plan of Care.

3.4   Notification of Hospice Services. Hospice shall fully inform Residential Hospice Patients of the Hospice Services to be provided by Hospice and the Nursing Facility Room and Board Services and Purchased Hospice Services, if any, to be provided by Nursing Facility.

3.5   Provision of Hospice Services. Hospice shall be available to provide Hospice Services, as required by applicable Federal and state laws and regulations, twenty-four (24) hours a day, seven (7) days a week. Hospice will provide Hospice Services to each Residential Hospice Patient in accordance with the Plan of Care for that patient.

3.6   Supervision of Hospice Plan of Care. Hospice will be responsible for the professional management of the Plan of Care, including any Purchased Hospice Services.

IV. SERVICES TO BE PROVIDED BY NURSING FACILITY.

4.1   Admission to Nursing Facility.

  1. Request for Admission. In the event that a pre-existing Hospice Patient requests admission to the Nursing Facility, Nursing Facility shall admit such Hospice Patient, subject to Nursing Facility's admission policies and procedures and the availability of beds. Nursing Facility shall notify Hospice, either orally or in writing, whether such Hospice Patient is authorized for admission as a Residential Hospice Patient. Nursing Facility shall maintain adequate records of all such authorizations of admission.

  2. Admission Policies. On or prior to the execution of this Agreement, Nursing Facility will provide Hospice with its current admission policies and procedures. Nursing Facility will promptly provide Hospice with any modification to these policies and procedures.

4.2   Notification of Nursing Facility Residents. Nursing Facility shall inform each terminally ill resident of the Nursing Facility of that resident's option to elect to receive Hospice Services, subject to such resident's meeting the Hospice's criteria for admission.

4.3   Notification of Services. Nursing Facility shall fully inform Residential Hospice Patients of the Other Nursing Facility Services and Uncovered Items and Services to be provided by Nursing Facility.

4.4   Coordination with Hospice Regarding Plan of Care.

  1. Design of Plan. In accordance with applicable Federal and state laws and regulations, Nursing Facility shall coordinate with Hospice in developing a Plan of Care for each new Residential Hospice Patient.

  2. Modification. The Nursing Facility will assist with periodic review and modification of the Plan of Care. Nursing Facility will consult with Hospice, as reasonably necessary, with respect to any modification of the Plan of Care.

  3. Monitoring of Residential Hospice Patient. Nursing Facility shall immediately inform Hospice of any change in the condition of a Residential Hospice Patient.

4.5   Provision of Nursing Facility Services. Nursing Facility shall be available to provide Nursing Facility Room and Board Services, as necessary or as appropriate, twenty-four (24) hours a day, seven (7) days a week. Nursing Facility will provide Nursing Facility Room and Board Services and Purchased Hospice Services, if any, to each Residential Hospice Patient in accordance with the Plan of Care for that Residential Hospice Patient.

4.6   Facility Requirements.

  1. Patient Room. Nursing Facility shall provide each Residential Hospice Patient with a clean, home-like room, designed and equipped for the comfort, privacy and safety of the Residential Hospice Patient and his/her personal belongings, which will accommodate visitors as contemplated by Section 4.5(b) hereof.

  2. Visiting Privileges. Nursing Facility shall permit free access and unrestricted visiting privileges (including, but not limited to, visits by children of any age) on a twenty-four (24) hours a day basis, each day of the calendar year.

  3. Visitor Accommodations. Nursing Facility shall provide adequate space, located conveniently to the Residential Hospice Patient, for private visiting among the Residential Hospice Patient, the Residential Hospice Patient's family members and any other visitors. Nursing Facility shall provide adequate accommodations for the Residential Hospice Patient's family members to remain with the Residential Hospice Patient up to twenty-four (24) hours a day and to permit family members privacy following the death of the Residential Hospice Patient.

  4. Hospice Access to Facility. Nursing Facility shall permit employees, contractors, agents and volunteers of the Hospice free and complete access to the Nursing Facility twenty-four (24) hours per day, as necessary, to permit Hospice to counsel, treat, attend and provide services to each Residential Hospice Patient.

  5. Personnel and Training. Upon Hospice's request, Nursing Facility shall cause Nursing Facility personnel who provide Nursing Facility Services to Residential Hospice Patients under this Agreement (i) to attend, at reasonable times and locations, training provided by Hospice in the care of Hospice Patients and (ii) to attend meetings and conferences of the Interdisciplinary Group. Nursing Facility personnel who provide Nursing Facility Services to Hospice Patients shall be reasonably acceptable to Hospice.

4.7   Facility Protocols. Nursing Facility shall institute, maintain and conduct administrative procedures and patient care protocols which are (a) consistent with the procedures and protocols of Hospice, including, but not limited to, Hospice protocols relating to resuscitation, nutrition and hydration, (b) in accordance with recognized professional standards of care for terminally ill patients and (c) reasonably necessary to implement the provisions of this Agreement. Upon the execution of this Agreement, Nursing Facility shall provide Hospice with Nursing Facility's established policies and protocols and shall promptly provide Hospice with any amendments or modifications thereto.

4.8   Patient Care. Nursing Facility shall provide care to each Residential Hospice Patient to keep him/her comfortable, clean and well groomed and protected from accident, injury or infection.

4.9   Patient Transfer. Nursing Facility agrees not to transfer any Residential Hospice Patient to another care setting without the prior approval of Hospice. If Nursing Facility fails to obtain the necessary prior approval, Hospice bears no financial responsibility for the costs of transfer and the costs of care provided in another setting.

V. RECORDS

5.1   Compilation of Records.

  1. Preparation. Nursing Facility and Hospice shall each prepare and maintain complete and detailed clinical records concerning each Residential Hospice Patient receiving Nursing Facility Services and Hospice Services under this Agreement in accordance with prudent record-keeping procedures and as required by applicable Federal and state law and regulations and applicable Medicare and Medicaid program guidelines. Each clinical record shall completely, promptly and accurately document all services provided to, and events concerning, each Residential Hospice Patient (including evaluations, treatments, progress notes, authorizations to admission to Hospice and/or Nursing Facility and physician orders entered pursuant to this Agreement). Nursing Facility and Hospice shall cause each entry made for services provided hereunder to be signed by the person providing the services.

  2. Storage. Nursing Facility and Hospice shall each retain such records for five (5) years from the date of discharge of each Residential Hospice Patient or such other time period as required by applicable state law. Each such record [shall document that the specified services are furnished in accordance with this Agreement and] shall be readily accessible and systematically organized to facilitate retrieval by either party.

5.2   Access. Subject to any required authorization by the subject Residential Hospice Patient (or his/her legal representative), Nursing Facility and Hospice shall each permit the other party or its authorized representative, upon reasonable notice, to review and make photocopies of records maintained by Nursing Facility or Hospice, as the case may be, relating to the provision of services under this Agreement, including but not limited to, the Plan of Care, medical records and records relating to billing and payment.

5.3   Inspection. To the extent required by applicable Federal or state law and regulations, Nursing Facility and Hospice and any respective agents thereof shall make available, upon written request by the Secretary of the United States Department of Health and Human Services, the Comptroller General of the United States, or any other authorized Federal or state official, or the duly authorized representative of the foregoing, their respective books, documents, and records necessary to verify the nature and extent of costs of Nursing Facility Services or Hospice Services until the expiration of four (4) years after the Nursing Facility Services or Hospice Services provided under this Agreement are furnished.

5.4   Destruction of Records. Nursing Facility and Hospice shall take reasonable precautions to safeguard records against loss, destruction, and unauthorized disclosure.

VI. DESIGNATION OF LIAISON; ADMINISTRATIVE APPEALS

6.1   Liaison. On or prior to the execution of this Agreement, Hospice and Nursing Facility shall each designate [a [number]] representative(s) to serve as liaison between them and to facilitate cooperative efforts in performance of their respective obligations under this Agreement. Thereafter, each of Hospice and Nursing Facility will promptly notify the other party of any change in its representative(s).

6.2   Resolution. Within [sixty (60)] days of execution of this Agreement, Hospice and Nursing Facility shall develop, maintain, and conduct, as necessary, clearly articulated dispute resolution procedures and shall act promptly to mediate any disputes with respect to the appropriateness of the Plan of Care, Hospice Services or Nursing Facility Room and Board Services.

VII. REPRESENTATIONS, WARRANTIES AND COVENANTS OF HOSPICE.

Hospice hereby represents, warrants and covenants to Nursing Facility as follows:

7.1   Organization. Hospice is a corporation duly organized, validly existing and in good standing under the laws of the state of [specify state] and has all requisite corporate power to conduct its business as presently conducted. [Hospice is duly qualified to do business as a foreign corporation in the state of [specify state].]

7.2   Authorization of this Agreement. The execution, delivery and performance of this Agreement has been duly authorized by all requisite corporate action on the part of Hospice. This Agreement has been duly executed and delivered by Hospice and constitutes a valid and binding obligation of Hospice.

7.3   Compliance. Hospice has materially complied with, and in performing this Agreement shall comply, in all material respects with all Federal, state and local laws and regulations applicable to it, its business and operations, including, without limitation (i) all applicable Federal, state and local laws and regulations relating to health and safety and (ii) all applicable Federal, state and local laws and regulations relating to hospice care.

7.4   Licensure. Hospice is duly certified as a Medicare provider under Title XVIII of the Social Security Act [and as a Medicaid provider under TitleXIX of the Social Security Act.] Hospice possesses all Federal, state and local licenses and permits material to and necessary in the conduct of its business as presently conducted. Such licenses and permits are in full force and effect, no violations are or have been recorded in respect of any such licenses or permits, and no proceeding is pending or, to the knowledge of Hospice, threatened to revoke or limit any thereof. Upon request of Nursing Facility, Hospice shall furnish true and complete copies of any of the aforementioned licenses or permits.

[7.5   No Litigation. [There is no action, suit, investigation or proceedings pending or, to the knowledge of Hospice, threatened against Hospice before any court or by or before any governmental or administrative body or arbitration board or tribunal.] Hospice shall promptly notify Nursing Facility of the commencement of any action or proceeding against Hospice with respect to any of its licenses, permits or other legal authorizations, including, but not limited to any sanctions, intermediate or otherwise, administrative or judicial fines, penalties, investigations or reports of action by Federal or state officials against Hospice pursuant to Federal or state laws or regulations.]

7.6   Insolvency. Hospice shall inform Nursing Facility in the event that any proceeding shall be instituted by or against Hospice in bankruptcy, or seeking liquidation, winding up, reorganization, protection, relief or composition of its debts under any law relating to bankruptcy, insolvency, reorganization or relief of debtors or seeking the appointment of a receiver or trustee.

7.7   Adequate Staffing and Facilities. As of the date hereof, Hospice has, and will maintain throughout the term of this Agreement, a sufficient number of medical, nursing and other staff to permit Hospice to perform its obligations hereunder. Such staff will be duly licensed, certified or registered in accordance with applicable Federal and state laws.

VIII. REPRESENTATIONS, WARRANTIES AND COVENANTS OF NURSING FACILITY.

Nursing Facility hereby represents, warrants and covenants to Hospice as follows:

8.1   Organization. Nursing Facility is a corporation duly organized, validly existing and in good standing under the laws of the state of [specify state] and has all requisite corporate power to conduct its business as presently conducted. [Nursing Facility is duly qualified to do business as a foreign corporation in the state of [specify state].]

8.2   Authorization of this Agreement. The execution, delivery and performance of this Agreement has been duly authorized by all requisite corporate action on the part of Nursing Facility. This Agreement has been duly executed and delivered by Nursing Facility and constitutes a valid and binding obligation of Nursing Facility.

8.3   Compliance. Nursing Facility has materially complied with, and in performing this Agreement shall comply, in all material respects with all Federal, state and local laws and regulations applicable to it, its business and operations, including, without limitation (i) all applicable Federal, state and local laws and regulations relating to health and safety and (ii) all applicable Federal, state and local laws and regulations, including, but not limited to, the Patient Self-Determination Act, relating to nursing facilities.

8.4   Licensure. Nursing Facility is duly certified as a Medicaid provider under Title XIX of the Social Security Act. Nursing Facility possesses all Federal, state and local licenses and permits material to and necessary in the conduct of its business as presently conducted. Such licenses and permits are in full force and effect, no violations are or have been recorded in respect of any such licenses or permits, and no proceeding is pending or, to the knowledge of Nursing Facility, threatened to revoke or limit any thereof. Upon request of Hospice, Nursing Facility shall furnish true and complete copies of any of the aforementioned licenses or permits.

[8.5   No Litigation. [There is no action, suit, investigation or proceedings pending or, to the knowledge of Nursing Facility, threatened against the Nursing Facility before any court or by or before any governmental or administrative body or arbitration board or tribunal.] Nursing Facility shall promptly notify Hospice of the commencement of action or proceeding against Nursing Facility with respect to any of its licenses, permits or other legal authorizations, including, but not limited to any sanctions, intermediate or otherwise, administrative or judicial fines, penalties, investigations or reports of action by Federal or state officials against Nursing Facility pursuant to Federal or state laws or regulations.]

8.6   Insolvency. Nursing Facility shall inform Hospice in the event that any proceeding shall be instituted by or against Nursing Facility in bankruptcy, or seeking liquidation, winding up, reorganization, protection, relief or composition of its debts under any law relating to bankruptcy, insolvency, reorganization or relief of debtors or seeking the appointment of a receiver or trustee.

8.7   Adequate Staffing and Facilities. Nursing Facility has, and will maintain throughout the term of this Agreement, a sufficient number of nursing and other staff who have the requisite training, skills and experience to permit Nursing Facility to perform its obligations hereunder. Such staff will be duly licensed, certified or registered in accordance with applicable Federal and state laws. Nursing Facility has, and will maintain, adequate facilities and equipment throughout the term of this Agreement to perform its obligations hereunder.

[8.8   Care of Hospice Patients. Nursing Facility has familiarized itself with the administrative, recordkeeping and personal care needs of Hospice Patients and the Nursing Facility is, and will be, fully competent and able to perform its obligations under this Agreement in accordance with recognized professional standards for the care of terminally-ill patients.]

IX. QUALITY ASSURANCE

Hospice shall develop, maintain, and conduct an ongoing, comprehensive assessment to evaluate the quality and appropriateness of Hospice Services and Nursing Facility Room and Board Services, as set forth and described in Exhibit A attached hereto and made a part hereof ("Quality Assurance Program"). Nursing Facility shall cooperate with Hospice in the conduct of the Quality Assurance Program and facilitate the administration of such program in relation to Purchased Hospice Services and Nursing Facility Room and Board Services performed by Nursing Facility. Hospice shall cooperate with Nursing Facility in the conduct of Nursing Facility's quality assessment and assurance committee as it relates to Residential Hospice Patients.

X. CONFIDENTIALITY

10.1   Confidentiality of Hospice Information. In the performance of its obligations under this Agreement, Hospice shall be required to disclose to Nursing Facility certain information pertaining to Hospice Patients (including, but not limited to, assessments, medical records, patient and family histories and the Hospice Plan of Care (collectively "Patient Information")) and may be required to disclose certain business or financial information of the Hospice (collectively, with the Patient Information, the "Hospice Confidential Information"). Nursing Facility agrees that it shall treat the Hospice Confidential Information with the same degree of care Nursing Facility affords to its own similar confidential information and shall not, except as specifically authorized in writing by Hospice or as otherwise required by law, reproduce any Hospice Confidential Information or disclose or provide any Hospice Confidential Information to any person.

10.2   Confidentiality of Nursing Facility Information. In the performance of its obligations under this Agreement, Nursing Facility shall be required to disclose to Hospice certain Patient Information (as defined in Section 10.1) pertaining to Nursing Facility residents (including the Plan of Care) and may be required to disclose to Hospice certain business or financial information of the Nursing Facility (collectively, with the Plan of Care and the Patient Information, the "Nursing Facility Confidential Information"). Hospice agrees that it shall treat the Nursing Facility Confidential Information with the same degree of care Hospice affords to its own similar confidential information and shall not, except as specifically authorized in writing by Nursing Facility or as otherwise required by law, reproduce any Nursing Facility Confidential Information or disclose or provide any Nursing Facility Confidential Information to any person.

XI. USE OF NAME OR MARKS. Neither Nursing Facility nor Hospice shall have the right to use the name, symbols, trademarks or service marks of the other party in advertising or promotional materials or otherwise without receiving the prior written approval of such other party; provided, that one party may use the name, symbols or marks of the other party in written materials previously approved by the other party for the purpose of informing prospective Residential Hospice Patients and Attending Physicians of the availability of the services described in this Agreement.

XII. REIMBURSEMENT

12.1   Medicaid Patients. Nursing Facility agrees to bill Hospice a fixed payment rate for each Residential Hospice Care Day provided to a Medicaid Eligible Residential Hospice Patient as set forth in Exhibit C and to accept such payment as payment in full for Nursing Facility Room and Board Services provided such Medicaid Eligible Residential Hospice Patient; provided, however, that Nursing Facility may bill such Medicaid Eligible Residential Hospice Patient for any items or services set forth in Section12.4. For Medicaid Eligible Residential Hospice Patients, Nursing Facility also agrees to bill Hospice for any Purchased Hospice Services provided to a Medicaid Eligible Residential Hospice Patient and to accept such payment as payment in full for such services.

12.2   Medicare Patients. Nursing Facility agrees to bill Hospice for any Purchased Hospice Services provided to a Medicare Eligible Residential Hospice Patient, as set forth in Exhibit B. Nursing Facility will accept such payment as payment in full for Purchased Hospice Services provided under this Agreement to such Medicare Eligible Residential Hospice Patient. Nursing Facility shall bill each Medicare Eligible Residential Hospice Patient (or the Medicare Eligible Residential Hospice Patient's third-party payor, if applicable), for Nursing Facility Room and Board Services provided such Patient and accept such payment as payment in full for Nursing Facility Room and Board Services.

12.3   Private Pay Residential Hospice Patients. With respect to any Private Pay Residential Hospice Patient, Nursing Facility agrees to bill [select one: Hospice or Private Pay Residential Hospice Patient] for any Purchased Hospice Services provided to that Private Pay Residential Hospice Patient, as set forth in Exhibit B, and to accept such payment as payment in full for such Purchased Hospice Services. Nursing Facility shall bill each Private Pay Residential Hospice Patient (or the Private Pay Residential Hospice Patient's third-party payor, if applicable), for Nursing Facility Room and Board Services provided such Patient and accept such payment as payment in full for Nursing Facility Room and Board Services. Neither party shall seek reimbursement from the other in the event of default of financial obligations on the part of the Private Pay Residential Hospice Patient.

12.4   Other Services. Nursing Facility shall bill any Residential Hospice Patient (or the Residential Hospice Patient's third party payor, if any) for (a)Other Nursing Facility Services, (b)Uncovered Items and Services, and (c)care provided by Nursing Facility upon the advance written request of a Residential Hospice Patient which is not reasonable or necessary for palliation or management of terminal illness and not rendered in accordance with the applicable Plan of Care. Hospice shall bear no responsibility, obligation, or other liability to reimburse Nursing Facility for the cost of these services.

12.5   Billing. Within [thirty (30)] days after the provision of Nursing Facility Room and Board Services or Purchased Hospice Services, Nursing Facility shall submit to Hospice all bills issued pursuant to Section 12.1, 12.2 or 12.3 on forms acceptable to Hospice that include information usually provided to third party payors to verify the services and charges reflected in such billings. Hospice shall pay Nursing Facility either [(a)] within sixty (60) days after receipt of each Nursing Facility bill [or (b) if applicable, upon payment by Medicaid to Hospice, whichever is later.] Payment by Hospice in respect of such bills shall be considered final, unless adjustments are requested in writing by Nursing Facility within [thirty (30)] days of receipt of payment.

12.6   Financial Recordkeeping. Nursing Facility will keep accurate books of account and records (the "Financial Records") at its principal place of business covering all transactions relating to this Agreement. [Not more than once a year, Hospice may, at its expense, retain an independent public accountant or other auditor to review the Financial Records and prepare a detailed statement showing the charges made to Hospice by Nursing Facility.] Hospice and its duly authorized representatives, including any [such] independent public accountant or other auditor, shall have the right during regular business hours and on reasonable written notice to Nursing Facility to examine Nursing Facility's Financial Records and to make copies thereof.

XIII. INSURANCE AND INDEMNIFICATION

13.1   Nursing Facility Insurance. Nursing Facility shall obtain and maintain, at its sole cost and expense, professional liability insurance, including coverage for any acts of professional malpractice, covering Nursing Facility, its directors, officers, employees, or agents in an amount not less than $_____ per claim and $_____ in the aggregate and comprehensive general liability insurance in an amount not less than $_____ in the aggregate and shall name Hospice as an additional insured party. At the request of Hospice, Nursing Facility shall furnish to Hospice satisfactory evidence of its liability insurance coverage and shall notify Hospice thirty (30) days prior to any material change in or termination of insurance coverage.

13.2   Hospice Insurance. Hospice shall obtain and maintain, at its sole cost and expense, professional liability insurance, including coverage for any acts of professional malpractice, covering Hospice, its directors, officers, employees, volunteers, and agents in an amount not less than $_____ per claim and $_____ in the aggregate and comprehensive general liability insurance in an amount not less than $_____ in the aggregate and shall name Nursing Facility as an additional insured party. At the request of Nursing Facility, Hospice shall furnish to Nursing Facility satisfactory evidence of its liability insurance coverage and shall notify Nursing Facility thirty (30) days prior to any material change in or termination of insurance coverage.

13.3   Indemnification.

  1. Nursing Facility agrees to indemnify and hold harmless and defend Hospice, its directors, officers, employees, volunteers, and agents from and against any and all claims, suits, damages, fines, penalties, liabilities and expenses (including reasonable attorney's fees and court costs) resulting from or arising out of, any claimed [willful or negligent?] act or omission by Nursing Facility or any of its directors, officers, employees, agents or volunteers pertaining to the services hereunder.

  2. Hospice agrees to indemnify and hold harmless and defend Nursing Facility, its directors, officers, employees, volunteers, and agents from and against any and all claims, suits, damages, fines, penalties, liabilities and expenses (including reasonable attorney's fees and court costs) resulting from or arising out of, any claimed [willful or negligent?] act or omission by Hospice or any of its directors, officers, employees, agents, or volunteers, pertaining to the services hereunder.

  3. For purposes of such indemnification, the following provisions shall apply. A person or entity entitled to be indemnified under paragraph (a) or (b) above (an "Indemnified Person") shall promptly notify the party having the obligation under this Agreement to indemnify the Indemnified Person (the "Indemnifier") with respect to any notice of a claim, threat to institute a proceeding or the commencement of an action. The Indemnifier will, if requested by the Indemnified Person, assume the defense of any litigation or proceeding for which indemnity hereunder is available, including the retention of counsel and payment of reasonable fees of such counsel, in which event, except as provided below the Indemnifier will not be responsible for any other fees or expenses of any other counsel retained by the Indemnified Person. However, if the Indemnified Person and Indemnifier reasonably conclude that the representation of both parties by the same counsel may involve a conflict due to actual or potential differing interests between them, the Indemnifier shall pay the reasonable fees of counsel for the Indemnified Person. The Indemnifier shall not be liable for any settlement of any litigation or proceeding effected without its written consent, which shall not be unreasonably withheld. If the Indemnifier assumes the defense of any litigation or proceeding, the Indemnifier will not settle such litigation or proceeding without the Indemnified Person's written consent, which shall not be unreasonably withheld.

XIV. TERM AND TERMINATION

14.1   Term of Agreement. The initial term of this Agreement shall be [one year] beginning with the Effective Date, with automatic [one year] renewals, unless sooner terminated as provided in this Article XIV of this Agreement.

14.2   Termination Without Cause. Either party may terminate this Agreement for any or no reason prior to the expiration of its term by providing at least [ninety (90)] days written notice of termination to the other party prior to the date of such termination. Such termination shall be effective without prior notice or consent of any Residential Hospice Patient, Attending Physician, or other third party.

14.3   Termination for Cause.

Either party shall have the right to terminate this Agreement for the following reasons:

  1. In the event that the Nursing Facility does not provide a material portion of the Nursing Facility Room and Board Services or Purchased Hospice Services, if any, to be provided under this Agreement for a period of thirty (30) consecutive days, upon ten (10) days written notice given prior to the effective date of such termination;

  2. In the event that the Hospice does not provide a material portion of the Hospice Services to be provided under this Agreement for a period of thirty (30) consecutive days, upon ten (10) days written notice given prior to the effective date of such termination;

  3. If any license, certification or accreditation of a party which is material to the performance of this Agreement is suspended or revoked;

  4. If any administrative or judicial fines, penalties or sanctions in excess of [$1,000] are imposed on one of the parties;

  5. If one of the parties commences or has commenced against it proceedings to liquidate, wind-up, reorganize or seek protection, relief or a composition of its debts under any law relating to insolvency, reorganization or relief of debtors or seeking the appointment of a receiver or trustee;

  6. If Hospice fails to develop and maintain a Plan of Care pursuant to applicable Federal, state or local law and regulations and in accordance with this Agreement;

  7. If Nursing Facility fails to assist in developing and maintaining a Plan of Care pursuant to applicable Federal, state or local law and regulations and in accordance with this Agreement; or

  8. If an action is prosecuted to final judgment against a party for violation of Federal or state laws or regulations.

14.4   Effect of Termination on Availability of Service.

In the event that this Agreement is terminated pursuant to Section 14.2 or 14.3, each of Nursing Facility and Hospice may negotiate separately with any former Residential Hospice Patient (or such patient's legal representative) to contract for the continuation of care. Nursing Facility agrees not to discharge any former Residential Hospice Patient until an alternative placement is found that is mutually agreeable to Nursing Facility, Hospice, and former Residential Hospice Patient.

14.5   Termination of Hospice Services by Residential Hospice Patient

  1. A Residential Hospice Patient may terminate receipt of Hospice Services and/or any Nursing Facility Services provided pursuant to this Agreement by written notice, including, but not limited to, use of Hospice's revocation form, given by the Residential Hospice Patient (or his/her legal representative) to Hospice and Nursing Facility. Such termination shall be effective upon delivery of such notice to both Nursing Facility and Hospice or upon such time as specified in the written notice.

  2. Termination of the receipt of Hospice Services and/or Nursing Facility Services by an individual Residential Hospice Patient shall not constitute a termination of this Agreement as a whole.

  3. In the event that a Residential Hospice Patient terminates receipt of Hospice Services and Nursing Facility Services pursuant to this Agreement, each of Hospice and Nursing Facility may negotiate separately with such former Residential Hospice Patient (or such patient's legal representative) to contract for the continuation of care.

XV. GENERAL PROVISIONS

[APPLICABLE STATE OR LOCAL LAWS AND REGULATIONS MAY AFFECT THIS CONTRACT. THE NHO MEMBER'S LEGAL COUNSEL SHOULD BE CONTACTED REGARDING APPROPRIATE MODIFICATIONS.]

15.1   Notices. Except as otherwise specified herein, all notices, demands, requests, or other communications which may be or are required to be given, served, or sent by any party to any other party pursuant to this Agreement shall be in writing and shall be delivered personally, mailed by first-class, registered or certified mail, return receipt requested, postage prepaid, or transmitted by facsimile transmission, addressed as follow:

  1. If to Hospice:______________________________Attention: __________Fax No.: __________

    with a copy (which shall not constitute notice) to:______________________________

  2. If to Nursing Facility:______________________________Attention: __________Fax No.: __________

    with a copy (which shall not constitute notice) to:______________________________

Each party may designate by notice in writing a new address to which any notice, demand, request or communication may thereafter be so given, served or sent. Each notice, demand, request or communication which shall be mailed, delivered or transmitted in the manner described above shall be deemed sufficiently given, served, sent and received for all purposes at such time as it is (a) delivered personally to the addressee, (b) received in the mail by the addressee (with the return receipt, the delivery receipt or the affidavit of messenger being conclusive evidence of its receipt), (c)with respect to a facsimile transmission, the machine confirmation being deemed conclusive evidence of such delivery or (d) at such time as delivery is refused by the addressee upon presentation.

15.2   Severability. If any part of any provision of this Agreement or any other agreement, document or writing given pursuant to or in connection with this Agreement shall be invalid or unenforceable under applicable law, said part shall be ineffective to the extent of such invalidity or unenforceability only, without in any way affecting the remaining parts of said provision or the remaining provisions of said agreement.

15.3   Survival. It is the express intention and agreement of the parties hereto that Articles V, X, XI, XII, XIII, and XIV of this Agreement shall survive the termination of this Agreement for any reason and that the covenants contained in Articles VII and VIII shall survive the execution of this Agreement until they are no longer effective by their terms.

15.4   Waiver. Neither the waiver by either of the parties hereto of a breach of or a default under any of the provisions of this Agreement, nor the failure of either of the parties, on one or more occasions, to enforce any of the provisions of this Agreement or to exercise any right or privilege hereunder shall thereafter be construed as a waiver of any subsequent breach or default of a similar nature, or as a waiver of any such provisions, rights or privileges hereunder.

15.5   Binding Effect. Subject to provisions hereof restricting assignment, this Agreement shall be binding upon and shall inure to the benefit of the parties hereto and their respective successors and permitted assigns.

15.6   Non-assignability. This Agreement shall not be assignable, in whole or in part, by either party without the prior written consent of the other party hereto. If Nursing Facility is duly permitted by Hospice to assign or subcontract any obligation or obligations under this Agreement, Nursing Facility shall cause any such permitted assignee or subcontractor to agree to applicable provisions of this Agreement, including, but not limited to, Articles V, X, XI and XIII.

15.7   Limitation on Benefits of this Agreement. It is the explicit intention of the parties hereto that no person or entity other than the parties hereto is or shall be entitled to bring any action to enforce any provision of this Agreement against either of the parties hereto, and that the covenants, undertakings, and agreements set forth in this Agreement shall be solely for the benefit of, and shall be enforceable only by, the parties hereto or their respective successors and assigns as permitted hereunder.

15.8   Amendment. This Agreement shall not be amended, altered, or modified, except by an instrument in writing duly executed by the parties hereto.

15.9   Entire Agreement. This Agreement, including Exhibits A, B, and C hereto, constitutes the entire agreement between the parties hereto with respect to the subject matter hereof, and it supersedes all prior oral or written agreements, commitments or understandings with respect to the matters provided for herein.

15.10   Headings. Article and Section headings contained in this Agreement are inserted for convenience of reference only, shall not be deemed to be a part of this Agreement for any purpose, and shall not in any way define or affect the meaning, construction or scope of any of the provisions hereof.

15.11   References. Except as otherwise specified, references to Articles and Sections contained in this Agreement shall be to the correspondingly numbered Articles and Sections as set forth in this Agreement.

15.12   Governing Law. This Agreement, the rights and obligations of the parties hereto, and any claims or disputes relating thereto, shall be governed by and construed in accordance with the laws of the state of __________ (but not including the choice of law rules thereof).

IN WITNESS WHEREOF, the undersigned have duly executed this Agreement, or have caused this Agreement to be duly executed on their behalf, as of the day and year first here in above set forth.

HOSPICE: Attest: [full legal name of hospice] _______________ By: _______________ its authorized agent

NURSING FACILITY: Attest: [full legal name of nursing facility] _______________ By: _______________ its authorized agent

Exhibit A. [Hospice Quality Assurance Program to be set forth and described as Exhibit A]

Exhibit B. PURCHASED HOSPICE SERVICES [Service/Charge]

Exhibit C. [Reimbursement Agreements to be set forth as Exhibit C]


APPENDIX C. MEDICAL GUIDELINES FOR DETERMINING PROGNOSIS IN SELECTED NON-CANCER DISEASES AND HOSPICE ENROLLMENT CRITERIA FOR END-STAGE DEMENTIA PATIENTS

MEDICAL GUIDELINES FOR DETERMINING PROGNOSIS IN SELECTED NON-CANCER DISEASES
Second Edition

Published by The National Hospice Organization
Copyright 1996, by the National Hospice Organization. All rights reserved.

The National Hospice Organization
1901 North Moore Street, Suite 901
Arlington, VA 22209

Written by

Standards and Accreditation Committee
Medical Guidelines Task Force

Brad Stuart, MD
Carla Alexander, MD
Cheryl Arenella, MD
Stephen Connor, PhD, Medical Guidelines Task Force Chair
Laurel Herbst, MD, American Academy of Hospice and Palliative Medicine
Diane Jones, MSW, Hospice Association of America
Barry Kinzbrunner, MD
Paul Rousseau, MD
True Ryndes, ANP, MPH, Standards and Accreditation Committee Chairperson
Michael Wohlfeiler, MD, JD
Chris Cody, RNC, MSN, Staff Liaison
Susan Buckley, CRNH, MS, Staff Liaison

©Copyright 1996, by the National Hospice Organization. All rights reserved. No portion of this publication may be duplicated without the written permission of the National Hospice Organization. Printed in the United States of America. These documents also are available at http://www.guideline.gov.

Item Number 713008
ISBN 0-931207-50-9

TABLE OF CONTENTS

Introduction and Overview
General Guidelines for Determining Prognosis
Heart Disease
Pulmonary Disease
Dementia
HIV Disease
Liver Disease
Renal Disease
Stroke and Coma
Amyotrophic Lateral Sclerosis
References
Appendices:
APPENDIX I: Type, Strength and Consistency of Evidence
APPENDIX II: Karnofsky Performance Status Scale
APPENDIX III: New York Heart Association Functional Classification
APPENDIX IV: Functional Assessment Staging (FAST) Scale: Dementia
APPENDIX V: Typical Time Course of Alzheimer’s Disease*
APPENDIX VI: Diagnostic Imaging Factors Indicating Poor Prognosis After Stroke
Worksheets*

* These sections were not included as part of Appendix C.

INTRODUCTION AND OVERVIEW

This document is written to help identify which patients with non-oncologic terminal illness are likely to have a significantly decreased prognosis if the disease runs its normal course. These Guidelines may also be helpful in determining patient eligibility under the Medicare/Medicaid Hospice Benefit by defining a population that may have a life expectancy of approximately six months.

Increased access to hospice services for patients with diagnoses across the medical spectrum is also a goal of this effort. Until recently, hospice in the US has been identified with care of the end-stage cancer patient.1 Dissemination of these Guidelines to hospice programs and the medical community should facilitate hospice referrals for patients with heart, lung, liver, Alzheimer's dementia, HIV and other non-cancer diseases.

Recent studies support this effort as timely and relevant. Earlier this year, Christakis and Escarce2 reported that in 1990, less than twenty percent of hospice referrals in five major states carried a non-cancer diagnosis. Since that time, the proportion of hospice admissions for diseases other than cancer has risen steadily. However, because of inherent challenges in predicting prognosis in non-cancer disease, a large proportion of patients surviving longer than six months are in this category. In the Christakis and Escarce cohort, for example, hospice patients with dementia had a median survival of 74 days, and 34.7 percent of these patients survived for longer than six months. These findings suggest that physicians and hospice programs might benefit from help in determining which non-cancer patients are likely to have a prognosis of approximately six months.

These Guidelines are a starting point, both for hospice programs evaluating patients for admission and recertification, and for critically-needed research on prognosis in end-stage disease. Pending confirmation and refinement through ongoing research with hospice patients, they provide a set of working criteria to use in determining prognosis. The Guidelines do not pretend to predict prognosis exactly in each case. In fact, even if based directly on clinical research, any set of criteria defines a range of probabilities for mortality in a specific population. Prediction of prognosis in individual cases cannot be expected; clinical judgment is always required on the original assessment and throughout the admission.

As of this writing, research is underway to assess the accuracy of existing Guidelines, and to amend them based on new findings. For example, one group has already documented that the previously-published NHO Guidelines3 for Alzheimer's disease do indeed predict six-month mortality in about 85% of patients who fit previous Guideline criteria.4 This is an improvement over Christakis and Escarce's findings from 1990 data, where only about 65% of hospice patients with dementia died within six months. Recent findings also have allowed us to refine the criteria for severity of dementia past Stage 7 of the FAST criteria.5 These changes have been included in this edition.

The Medical Nature of the Guidelines

These Guidelines are based on medical findings. However, decisions to admit patients to hospice are often not based on medical factors alone. They are routinely influenced by nonmedical factors which would generally be reflected in the treatment plan, e.g. patient decisions to receive strict symptom control rather than life-prolonging care, or selection of "optimal" rather than "maximal" treatment regimens tempered by intolerance or refusal of medication due to side-effects.

In addition, it is important to make a distinction between admitting a patient to the hospice program and certifying a patient for the Medicare Hospice Benefit. Individual hospice programs may establish admission criteria that reflect the unique characteristics and values of their communities. This may mean that some patients could be admitted to hospice care prior to an estimated six months before death. However, care must be taken to certify patients for the Benefit only when it is reasonable to conclude that their prognosis is six months or less. In other cases alternative modes of reimbursement, often provided through community support, can be sought outside the Medicare Hospice Benefit.

Emphasis should be placed on evaluating the whole person and the entirety of the illness. It is important to note, for example, that a patient may have multiple medical problems, none of which individually amount to a terminal diagnosis, but when taken together indicate a terminal condition. In short, clinical judgment that takes both medical and nonmedical factors into account is necessary for accurate estimation of prognosis.

Potential Limitations

Several caveats are in order when using these Guidelines for prognostic purposes. They are a first attempt at extrapolating a large amount of heterogeneous evidence from many studies to predict survival in non-cancer diseases (see Appendix I). Their accuracy will need to be validated by further research. These Guidelines should be applied to individual cases very cautiously, for at least the following reasons:

  1. Many of the studies referenced here indicate an increased likelihood of death, sometimes within an uncertain time frame. The six month definition of terminal illness adopted for the Medicare Hospice Benefit has rarely been used as a specific outcome measure in most of this research. Further studies with larger populations of hospice patients are needed to determine median survival accurately with reference to the six month standard.

  2. Clinical judgment must always be applied in each individual case to supplement these Guidelines. All studies are performed on large enough populations to attain statistical significance, so that individual differences in disease progression are averaged and lost to view. An individual patient who may meet Guideline criteria that were significant in a study of a large cohort might respond in unpredictable ways and have unexpected outcomes as his or her disease runs its own unique course. Therefore the Guidelines must be applied to patients not only on admission, but at intervals throughout the patient's course in hospice.

  3. Many of the studies referenced here were done in institutionalized populations. They may or may not be generalizable to patients living at home with family caregivers.

  4. Many studies pool patients at all stages of disease. Studies done with selected cohorts of end-stage patients might yield different conclusions. For instance, for a large population of patients with dementia at all stages of severity, antibiotics may be shown to postpone mortality. However, the same drugs have not been shown to lengthen survival in the subpopulation with very end-stage dementia.6 Again, further research is needed in the terminal population.

  5. Almost all studies have been done with patients who received standard medical therapy when they became acutely ill, thus prolonging the course of the illness. Little recent research has been done to study the natural course of untreated end-stage disease. Thus, much of the literature may be defining length of life as inappropriately long for patients who choose a non-curative approach.

  6. The course of most non-cancer disease is inherently difficult to predict. The natural history of most non-cancer diseases is characterized by periods of relative stability punctuated by acute downturns, as opposed to the comparatively relentless, and thus more predictable, downhill course in cancer. This natural tendency toward stabilization in non-cancer disease may be augmented by hospice intervention, which may bring about a prolongation of the terminal phase due to improved patient compliance, symptom control and prevention of complications.

  7. This difficulty in predicting mortality in non-cancer disease is compounded by the fact that palliation of non-cancer disease is frequently similar, and sometimes identical, to standard medical treatment. Therefore hospice can and frequently does coincidentally extend the life of the non-cancer patient in the act of palliating symptoms. This situation is new to many hospices, who have been trained to treat cancer pain but to leave treatment of cancer itself to the oncologist. To palliate cancer symptoms, hospice employs medications and other interventions which in most cases do not prolong life. Chemotherapy or radiation for palliation are generally used by hospices only when pain and symptoms can not be managed by other interventions. On the other hand, hospice frequently uses the same medications and interventions to palliate non-cancer symptoms that the primary physician or medical specialist uses for active treatment. For instance, skillful palliation of end-stage congestive heart failure requires not only morphine for dyspnea, but also judicious use of diuretics and vasodilators. But these drugs do more than make the patient comfortable -- it is well established that they also prolong life significantly.7 Thus good hospice care can stabilize patients with non-cancer disease, creating a dilemma for the program if the patient survives for longer than six months without evidence of serious clinical decline.

Fiscal intermediaries and hospice programs alike would benefit from a thorough awareness of these factors. These Guidelines are just a starting point in decision making in non-cancer disease. It is clear that they must be supplemented by clinical judgment at the time of admission. But frequent clinical reassessment, decisions concerning recertification versus possible discharge from the Medicare/Medicaid Hospice Benefit, thorough documentation of medical evidence of continued disease progression and cooperative review of appropriateness of care with intermediaries are all important ongoing considerations.

Acknowledgment

Recognition should be given to other systems of prognostication already devised for use in advanced medical illness.8 However, these Guidelines were developed de novo for several reasons. First, previous systems were developed for predicting prognosis in seriously ill hospitalized patients who were all receiving aggressive medical therapy. This is a different population than those who are generally considered hospice candidates, although this situation could change. Also, prior prognostic systems require large amounts of detailed clinical and laboratory data. This quantity and quality of information is primarily utilized in research studies, and generally unavailable to providers in the field. Additionally, unlike other systems, these Guidelines were designed for ease of application by the average hospice program, whose staff may not have access to the computer hardware, software and programming expertise needed to use more sophisticated prognostic systems. The medical knowledge and clinical experience needed to understand and apply these Guidelines should be well within the existing capabilities of the hospice staff, ideally under the active leadership of a qualified and enthusiastic Medical Director.

GENERAL GUIDELINES FOR DETERMINING PROGNOSIS

The following parameters may be used to help determine whether a patient is appropriate for hospice care and/or eligible for the Medicare/Medicaid Hospice Benefit. These General Guidelines apply to all patients referred to hospice. However, they may be specifically applied to patients who do not fall under any of the specific diagnostic categories for which disease-specific Guidelines have been written. An example might be the elderly debilitated patient whose intake of food and fluid has declined to the point where weight loss has become significant, although no specific disease predominates in the clinical picture.

The patient should meet all of the following criteria:

  1. The patient's condition is life limiting, and the patient and/or family have been informed of this determination.

    1. A "life limiting condition" may be due to a specific diagnosis, a combination of diseases, or there may be no specific diagnosis defined.9

  2. The patient and/or family have elected treatment goals directed toward relief of symptoms, rather than cure of the underlying disease.

  3. The patient has either of the following:

    1. Documented clinical progression of disease, which may include:

      1. Progression of the primary disease process as listed in disease-specific criteria, as documented by serial physician assessment, laboratory, radiologic or other studies.

      2. Multiple Emergency Department visits or inpatient hospitalizations over the prior six months.10

      3. For homebound patients receiving home health services, nursing assessment may be documented.

      4. For patients who do not qualify under 1, 2 or 3, a recent decline in functional status may be documented.

        1. Functional decline should be recent, to distinguish patients who are terminal from those with reduced baseline functional status due to chronic illness. Clinical judgment is required for patients with a terminal condition and impaired status due to a different non-terminal disease, e.g., a patient chronically paraplegic from spinal cord injury who is recently diagnosed with cancer.

        2. Diminished functional status may be documented by either:

          1. Karnofsky Performance Status of less than or equal to 50%,11, 12, 13 (see Appendix II) or

          2. Dependence in at least three of six Activities of Daily Living (ADL's).14, 15, 16, 17, 18, 19, 20, 21, 22
            "Activities of Daily Living" are:

            1. Bathing

            2. Dressing

            3. Feeding23

            4. Transfers

            5. Continence of urine and stool

            6. Ability to ambulate independently to bathroom.

    2. Documented recent impaired nutritional status related to the terminal process.

      1. Unintentional, progressive weight loss of greater than 10% over the prior six months.24, 25, 26, 27

      2. Serum albumin less than 2.5 gm/dl28, 29, 30 may be a helpful prognostic indicator, but should not be used in isolation from other factors in I-III above.

MEDICAL GUIDELINES FOR DETERMINING PROGNOSIS: HEART DISEASE

This section is meant to assist in the determination of prognosis for patients with end-stage heart disease. It is important to remember that with skillful palliation including judicious use of diuretics and vasodilators, particularly angiotensin-converting enzyme (ACE) inhibitors, some patients may survive for long periods with extremely severe symptoms. These drugs definitely promote patient comfort, but they also prolong life.31 On the other hand, some patients with advanced coronary disease may die suddenly and unexpectedly from acute ventricular arrhythmias.

The likelihood of early mortality is increased in patients who show all of the following characteristics:

  1. Symptoms of recurrent congestive heart failure (CHF) at rest.

    1. These patients are classified as New York Heart Association (NYHA) Class IV32 (see Appendix III).

    2. Ejection fraction of 20% or less is helpful supplemental objective evidence, but should not be required if not already available.33

  2. Patients should already be optimally treated with diuretics and vasodilators, preferably angiotensin-converting enzyme (ACE) inhibitors.

    1. The patient experiences persistent symptoms of congestive heart failure despite attempts at maximal medical management with diuretics and vasodilators.

    2. "Optimally treated" means that patients who are not on vasodilators have a medical reason for refusing these drugs, e.g. hypotension or renal disease.

    3. Although newer beta blockers with vasodilator activity, e.g. carvedilol, have recently been shown to decrease morbidity and mortality in chronic CHF,34 they are not included in the definition of "optimal treatment" at this time.

  3. In patients with refractory, optimally treated CHF as defined above, each of the following factors have been shown to decrease survival further, and thus may help in educating medical personnel as to the appropriateness of hospice for cardiac patients.

    1. Symptomatic supraventricular or ventricular arrhythmias that are resistant to antiarrhythmic therapy.

    2. History of cardiac arrest and resuscitation in any setting.35

    3. History of unexplained syncope.36, 37, 38

    4. Cardiogenic brain embolism, i.e., embolic CVA of cardiac origin.39

    5. Concomitant HIV disease.40

MEDICAL GUIDELINES FOR DETERMINING PROGNOSIS: PULMONARY DISEASE

Determining prognosis in end-stage lung disease is extremely difficult. There is marked variability in survival.41 Physician estimates of prognosis vary in accuracy, even in patients who appear end-stage.42 Even at the time of intubation and mechanical ventilation for respiratory failure from acute exacerbation of chronic obstructive pulmonary disease (COPD), six-month survival cannot be predicted with certainty from simple data easily available to the clinician.43 Far less information than this is available to most hospice programs at the time of referral.

Patients who fit the following parameters can be expected to have the lowest survival rates. Although the end stages of various forms of lung disease differ in some respects, most follow a final common pathway leading to progressive hypoxemia, cor pulmonale and recurrent infections. Thus, these Guidelines refer to patients with many forms of advanced pulmonary disease. At the present time, it is uncertain what number or combination of these factors might predict six-month mortality; clinical judgment is required.

  1. Severity of chronic lung disease documented by:

    1. Disabling dyspnea at rest, poorly or unresponsive to bronchodilators, resulting in decreased functional activity, e.g., bed-to-chair existence, often exacerbated by other debilitating symptoms such as fatigue and cough.

      Forced Expiratory Volume in One Second (FEV1), after bronchodilator, less than 30% of predicted,44, 45, 46 is helpful supplemental objective evidence, but should not be required if not already available.

    2. Progressive pulmonary disease.

      1. Increasing visits to Emergency Department or hospitalizations for pulmonary infections and/or respiratory failure.

      2. Decrease in FEV1 on serial testing of greater than 40 ml per year47, 48, 49 is helpful supplemental objective evidence, but should not be required if not already available.

  2. Presence of cor pulmonale or right heart failure (RHF).50, 51, 52

    1. These should be due to advanced pulmonary disease, not primary or secondary to left heart disease or valvulopathy.

    2. Cor pulmonale may be documented by:

      1. Echocardiography.

      2. Electrocardiogram.

      3. Chest x-ray.

      4. Physical signs of RHF.

  3. Hypoxemia at rest on supplemental oxygen.

    1. pO2 less than or equal to 55 mm Hg on supplemental oxygen.

    2. Oxygen saturation less than or equal to 88% on supplemental oxygen.

  4. Hypercapnia.

    1. pCO2 equal to or greater than 50 mm Hg.

  5. Unintentional progressive weight loss of greater than 10% of body weight over the preceding six months.53, 54

  6. Resting tachycardia greater than 100/minute in a patient with known severe chronic obstructive pulmonary disease.55, 56, 57, 58

MEDICAL GUIDELINES FOR DETERMINING PROGNOSIS: DEMENTIA

This section is meant to assist in determining whether a patient with end-stage dementia is appropriate for hospice care and/or eligible for the Medicare/Medicaid Hospice Benefit. Although dementia shortens life independent of culture or ethnicity,59 prediction of six-month mortality is challenging. Severity of dementia alone correlates with poor survival in studies of institutionalized60 and outpatients,61 but patients with very advanced dementia can survive for long periods with meticulous care as long as they do not develop lethal complications. Death usually occurs, in fact, as a result of comorbid conditions.62

The term "dementia" refers here to chronic, primary and progressive cognitive impairment of either the Alzheimer or multi-infarct type. Although most research on prognosis in dementia is done with Alzheimer's patients, the vascular (multi-infarct) dementias appear to progress to death more quickly.63, 64, 65 These guidelines do not refer to acute, potentially reversible or secondary dementias, i.e., those due to drug intoxication, cancer, AIDS, major stroke, or heart, renal or liver failure.

  1. Functional Assessment Staging

    1. Even severely demented patients may have a prognosis of up to two years. Survival time depends on variables such as the incidence of comorbidities and the comprehensiveness of care.

    2. The patient should be at or beyond Stage Seven of the Functional Assessment Staging66 Scale (see Appendix IV). The factors listed below should be understood explicitly, since many patients do not progress in an orderly fashion through the substages of Stage 7. Also see Appendix V, "Typical Time Course of Alzheimer's Disease," for a pictorial representation of the continuum of dementia.67

    3. The patient should show all of the following characteristics:

      1. Unable to ambulate without assistance.

        This is a critical factor. Recent data indicate that patients who retain the ability to ambulate independently do not tend to die within six months, even if all other criteria for advance dementia are present.68

      2. Unable to dress without assistance.

      3. Unable to bathe properly.

      4. Urinary and fecal incontinence.

        1. Occasionally or more frequently, over the past weeks.

        2. Reported by knowledgeable informant or caregiver.

      5. Unable to speak or communicate meaningfully.

        1. Ability to speak is limited to approximately a half dozen or fewer intelligible and different words, in the course of an average day or in the course of an intensive interview.

  2. Presence of Medical Complications.

    1. The presence of medical comorbid conditions of sufficient severity to warrant medical treatment, documented within the past year, whether or not the decision was made to treat the condition, decrease survival in advanced dementia.69, 70

    2. Comorbid Conditions associated with dementia:

      1. Aspiration pneumonia.

      2. Pyelonephritis or other upper urinary tract infection.

      3. Septicemia.

      4. Decubitus ulcers, multiple, stage 3-4.

      5. Fever recurrent after antibiotics

    3. Difficulty swallowing food or refusal to eat, sufficiently severe that patient cannot maintain sufficient fluid and calorie intake to sustain life, with patient or surrogate refusing tube feedings or parenteral nutrition.

      1. Patients who are receiving tube feedings must have documented impaired nutritional status as indicated by:

        1. Unintentional, progressive weight loss of greater than 10% over the prior six months.71, 72, 73, 74

        2. Serum albumin less than 2.5 gm/dl may be a helpful prognostic indicator, but should not be used by itself.75, 76, 77

MEDICAL GUIDELINES FOR DETERMINING PROGNOSIS: HIV DISEASE

With the introduction of new classes of anti-retroviral therapy such as protease inhibitors (PI's), and better control of opportunistic infections, the perception of HIV may be changing from that of inexorably fatal disease to that of chronic illness.78 The ability to measure the amount of circulating virus (viral load, HIV RNA)79, 80 has dramatically changed both the management of disease81 and the ability to predict survival. Previously published data using the CD4+ cell count82 alone as a prognostic marker will not be as helpful in determining appropriateness for hospice care.

With the announcement that viral load could be suppressed to undetectable levels for at least a year in 90% of treated patients by a combination of AZT, 3TC and indinavir, a PI,83 a new air of hopefulness exists in AIDS treatment. Although authorities now discuss the possibility of eradicating HIV from patients, it is far from certain that new drugs will result in complete reconstitution of the immune system,84 or in recovery of other organ systems already seriously damaged by HIV. Therefore, at this time these Guidelines must reflect past literature until newer studies are available.

HIV mortality is influenced by new and changing therapies, practitioners' skill and experience in management, and individual patient tolerance for treatment. Other factors contribute to the difficulty of prognosis in this disease. It occurs predominately in the young, who are both constitutionally better able to withstand a heavy burden of disease, and less likely to forego intensive therapies, than the more elderly populations typical of other end-stage illnesses. Because of improved prophylactic regimens, most deaths from AIDS are now caused by opportunistic infections, persistent wasting, or neoplasm.

It is important to discuss a patient's clinical course with a physician who is experienced in caring for persons with HIV disease85, 86 or with one who is experienced in Palliative Medicine. As in any end-stage disease, optimum therapy should have been exhausted or refused by the patient. The course over the previous month may reflect the patient's prognosis.

Concerning protease inhibitors, unless patients taking these medications fit the CD4+ and viral load criteria listed below, they may have a prognosis considerably longer than six months. Thus these drugs may be considered life-prolonging, not palliative, in the hospice setting. Additionally, patients already enrolled in hospice who decide to start these medications may lengthen their prognosis considerably. Programs will have to take these issues into account when deciding whether to cover PI's under the Medicare/Medicaid Hospice Benefit.

The following factors are correlated with early mortality and therefore may be helpful when evaluating a patient for terminal care or for coverage by the Medicare/Medicaid Hospice Benefit:

  1. CD4+ Count

    1. Patients whose CD4+ count is below 25 cells/mcL, measured during a period when patient is relatively free of acute illness, may have a prognosis less than six months, but should be followed clinically and observed for disease progression and decline in recent functional status.

    2. Patients with CD4+ count above 50 cells/mcL who are followed by an experienced AIDS practitioner probably have a prognosis longer than six months unless there is a non-HIV-related co-existing life-threatening disease. In one study of CD4+ counts and mortality, median survival of the entire population of patients with CD4+ <50 was 11.9 months.87

  2. Viral Load

    1. Patients with a persistent HIV RNA (viral load) of >100,000 copies/ml may have a prognosis less than six months.

    2. Patients with lower viral loads may have a prognosis of less than six months if.88

      1. They have elected to forego antiretroviral and prophylactic medication.

      2. Their functional status is declining.

      3. They are experiencing complications listed in IV below.

  3. Life-threatening complications with median survival:

    The following HIV-related opportunistic diseases all are associated with prognosis less than six months. Note that prognosis may be longer for certain conditions if patient elects treatment:

    A. CNS lymphoma89 2.5 months
    B. Progressive multifocal leukoencephalopathy90 4 months
    C. Cryptosporidiosis91 5 months
    D. Wasting (loss of 33% lean body mass)92 <6 months
    E. MAC bacteremia, untreated93 <6 months
    F. Visceral Kaposi's sarcoma unresponsive to therapy94   6 month mortality 50%.
    G. Renal failure, refuses or fails dialysis95, 96 <6 months
    H. Advanced AIDS dementia complex97 6 months
    I. Toxoplasmosis98 6 months
  4. The following factors have been shown to decrease survival significantly and should be documented if present:

    1. Chronic persistent diarrhea for one year, regardless of etiology.99

    2. Persistent serum albumin < 2.5 gm/dl.100, 101, 102

    3. Concomitant substance abuse.103

    4. Age greater than 50.104, 105, 106, 107

    5. Decisions to forego antiretroviral, chemotherapeutic and prophylactic drug therapy related specifically to HIV disease.

    6. Congestive heart failure, symptomatic at rest.108

MEDICAL GUIDELINES FOR DETERMINING PROGNOSIS: LIVER DISEASE

Prognosis in advanced liver disease has been widely studied to assess readiness for liver transplantation.109, 110 Clinical symptoms and signs and laboratory values contained within the Child-Turcotte classification111 as modified by Pugh,112 not included here, have been shown to correlate significantly with early mortality.113, 114 Some of these variables, with the addition of other clinical syndromes associated with mortality, are shown below.

Although accurate, albeit complex, prognostic indices based on multivariate analyses have been developed,115 they are still controversial. They are not recommended here since:

  1. All the required elements may not be available to hospice programs at the time of referral.

  2. The computing power needed to calculate these scores may not be available to many hospice admissions staff.

  3. Nearly every study on prognosis in advanced liver disease has been done outside the US, and World Health Organization data reveals that patterns of death from liver disease, as well as risk factors such as alcoholism and hepatitis B, can differ widely among countries.116

The following factors have been shown to correlate with poor short-term survival in advanced cirrhosis of the liver due to alcoholism, hepatitis, or uncertain causes (cryptogenic). Their effects are additive; i.e. prognosis worsens with the addition of each one. Clinical judgment is vital. The following factors should be followed and reviewed over time. Patients should have end-stage cirrhosis; those who are newly decompensated, i.e. in their first hospitalization, may improve dramatically with treatment compared to those who are in the terminal phase of a chronic process.117

The patient should not be a candidate for liver transplantation.

  1. Laboratory indicators of severely impaired liver function:

    Patients with this degree of impairment have a poor prognosis. The patient should show both of the following:

    1. Prothrombin time prolonged more than 5 sec. over control.

    2. Serum albumin < 2.5 gm/dl.

  2. Clinical indicators of end-stage liver disease:

    The patient should show at least one of the following:

    1. Ascites, refractory to sodium restriction and diuretics, or patient non-compliant.

      1. Maximal diuretics generally used: Spironolactone 75-150 mg/day plus furosemide >40 mg/day.118

        1. Spontaneous bacterial peritonitis.119

      2. Median survival 30% at one year;120 high mortality even when infection cured initially if liver disease is severe or accompanied by renal disease.121

        1. Hepatorenal syndrome.122

      3. In patient with cirrhosis and ascites, elevated creatinine and BUN with oliguria (400 ml/da) and urine sodium concentration <10 mEq/l.

      4. Usually occurs during hospitalization; survival generally days to weeks.

    2. Hepatic encephalopathy, refractory to protein restriction and lactulose or neomycin,123 or patient non-compliant.

      1. Manifested by: decreased awareness of environment, sleep disturbance, depression, emotional lability, somnolence, slurred speech, obtundation.124

      2. Physical exam may show flapping tremor of asterixis, although this finding may be absent in later stages.125

      3. Stupor and coma are extremely late-stage findings.

        1. Recurrent variceal bleeding.126

      4. Following initial variceal hemorrhage, one third died in hospital, one third rebled within six weeks; two thirds survived less than 12 months.127

      5. Patient should have rebled despite therapy, or refused further therapy, which currently includes:128, 129

        1. Injection sclerotherapy130 or band ligation, if available.131

        2. Oral beta blockers.132

        3. c. Transjugular intrahepatic portosystemic shunt (TIPS).133

  3. The following factors have been shown to worsen prognosis and should be documented if present:

    1. Progressive malnutrition134

    2. Muscle wasting with reduced strength and endurance.

    3. Continued active alcoholism, i.e. > 80 g ethanol per day135, 136, 137

    4. Hepatocellular carcinoma138

    5. HBsAg positivity139

MEDICAL GUIDELINES FOR DETERMINING PROGNOSIS: RENAL DISEASE

This section is meant to assist in determining whether a patient with end-stage renal disease is appropriate for hospice care and/or eligible for the Medicare/Medicaid Hospice Benefit. Absent other comorbid conditions, the patient should not be seeking dialysis or renal transplant. Patients who do refuse dialysis or transplant are generally appropriate for hospice services if they fit dialysis criteria.140, 141 When evaluating patients with end-stage renal disease (ESRD),142 a nephrology consultation may be helpful since individual patient variables can influence longevity.143

Hospitalized patients may develop acute renal failure (ARF) following trauma or major surgery. Short-term survival may be difficult to predict during initial evaluation and treatment. However, factors listed in III. below may be helpful in evaluating these acutely-ill patients for hospice admission.144

Chronic renal failure (CRF) can be treated with either hemo- or chronic ambulatory peritoneal dialysis (CAPD), which prolongs survival indefinitely. If dialysis is discontinued, the chance of early death is greatly increased. An occasional patient with residual renal function after dialysis is discontinued may remain alive for a period of time, but survival beyond six months is highly unlikely.

Care should be taken in assessing patients with nephrotic syndrome. This illness often follows a protracted course; nephrology consultation can assist with prognosis.

  1. Laboratory criteria for renal failure.

    These values may be used to assess patients with renal failure who are not dialyzed, as well as those who survive more than a week or two after dialysis is discontinued. Patients with this degree of renal failure can be expected to die shortly without dialysis. Bearing in mind individual differences in tolerance for very elevated creatinine levels, critical renal failure is defined (HCFA form #2728) as:

    1. Creatinine clearance of less than 10cc/min (less than 15 cc/min for diabetics) AND

    2. Serum creatinine greater than 8.0 mg/dl (greater than 6.0 mg/dl for diabetics).

      Notes:

      1. Creatinine clearance may be estimated by using the following formula, thus avoiding a 24-hour urine collection:

        Ccreat =   (140 - age in yrs.) (body wt. in kg);  multiply by 0.85 for women.

         
        (72) (serum creat in mg/dl)  
      2. Blood urea nitrogen (BUN) values are not used in the determination of critical renal failure, since they can be extremely elevated from prerenal azotemia due to dehydration, hypovolemia or other causes.

  2. Clinical signs and syndromes associated with renal failure.

    The following clinical signs are used as criteria for beginning dialysis. For patients with end-stage renal disease who are not to be dialyzed, the following may help define hospice appropriateness:

    1. Uremia: clinical manifestations of renal failure.

      1. Confusion, obtundation

      2. Intractable nausea and vomiting

      3. Generalized pruritis

      4. Restlessness, "restless legs"

    2. Oliguria: Urine output less than 400cc/24 hrs.

    3. Intractable hyperkalemia: persistent serum potassium >7.0 not responsive to medical management.

    4. Uremic pericarditis.

    5. Hepatorenal syndrome.

    6. Intractable fluid overload.

  3. In hospitalized patients with ARF, these comorbid conditions predict early mortality:

    1. Mechanical ventilation.145

    2. Malignancy--other organ systems.146, 147, 148

    3. Chronic lung disease.149

    4. Advanced cardiac disease.150, 151, 152, 153

    5. Advanced liver disease.154

    6. Sepsis.155, 156, 157, 158

    7. Immunosupression/AIDS.

    8. Albumin < 3.5 gm/dl.159

    9. Cachexia.160

    10. Platelet count < 25,000.161

    11. Age > 75.162, 163, 164, 165, 166

    12. Disseminated intravascular coagulation.167

    13. Gastrointestinal bleeding.168

MEDICAL GUIDELINES FOR DETERMINING PROGNOSIS: STROKE AND COMA

After stroke, patients who do not die during the acute hospitalization tend to stabilize with supportive care only. Continuous decline in clinical or functional status over time means that the patient's prognosis is poor.

Conversely, steady improvement in the patient's functional or physiologic status may indicate that the patient is not terminally ill. Care should be taken to distinguish true recovery of performance and physiologic function from the improvement in symptoms and subjective well-being that can accompany hospice intervention.

  1. During the acute phase immediately following a hemorrhagic or ischemic stroke, any of the following are strong predictors of early mortality:

    1. Coma or persistent vegetative state secondary to stroke, beyond three days' duration.169, 170, 171, 172, 173, 174, 175

    2. In post-anoxic stroke, coma or severe obtundation, accompanied by severe myoclonus, persisting beyond three days past the anoxic event.176, 177, 178

    3. Comatose patients with any 4 of the following on day 3 of coma had 97% mortality by two months:179

      1. Abnormal brain stem response

      2. Absent verbal response

      3. Absent withdrawal response to pain

      4. Serum creatinine >1.5 mg/dl

      5. Age >70

    4. Dysphagia severe enough to prevent the patient from receiving food and fluids necessary to sustain life, in a patient who declines, or is not a candidate for, artificial nutrition and hydration.

    5. If computed tomographic (CT) or magnetic resonance imaging (MRI) scans are available, certain specific findings may indicate decreased likelihood of survival, or at least poor prognosis for recovery of function even with vigorous rehabilitation efforts, which may influence decisions concerning life support or hospice. Please see Appendix VI for a list of these diagnostic imaging factors. It should be borne in mind that clinical variables, not imaging studies, are the primary criteria for hospice referral.

  2. Once the patient has entered the chronic phase, the following clinical factors may correlate with poor survival in the setting of severe stroke, and should be documented. The referenced factors have been studied in relation to prognosis in stroke, whereas others may be found elsewhere in these Guidelines where they relate to declining patients in general, or to comparable conditions such as dementia.

    1. Age greater than 70.180, 181, 182, 183

    2. Poor functional status, as evidenced by Karnofsky score of <50%. See Appendix II.

    3. Post-stroke dementia, as evidenced by a FAST score of greater than 7. See Appendix IV.

    4. Poor nutritional status, whether on artificial nutrition or not:

      1. Unintentional progressive weight loss of greater than 10% over past six months.184, 185, 186, 187

      2. Serum albumin less than 2.5 gm/dl, may be a helpful prognostic indicator, but should not be used by itself.188, 189, 190

    5. Medical complications related to debility and progressive clinical decline. It is assumed that these patients are in chronic care situations similar to those with end-stage dementia.191 Although studies are not available to relate these directly to six-month prognosis in stroke, their presence should be documented.

      1. Aspiration pneumonia.

      2. Upper urinary tract infection (pyelonephritis).

      3. Sepsis.

      4. Refractory stage 3-4 decubitus ulcers.

      5. Fever recurrent after antibiotics.

MEDICAL GUIDELINES FOR DETERMINING PROGNOSIS: AMYOTROPHIC LATERAL SCLEROSIS (ALS)

Amyotrophic lateral sclerosis (ALS) is a progressive neurologic disease that is fatal in about three fourths of patients within one to five years after symptom onset,192 with median survival of 4 years or less,193 although some studies indicate longer survival in some patients with symptom onset before age 45.194 The cause is unknown in 90% of cases, and at present there is no effective treatment.195, 196 Crude mortality rates from ALS have risen about 50% in the last fifteen years,197, 198 but this appears due to declining competitive mortality from ischemic heart disease and stroke rather than rising incidence of ALS.199

Although the disease usually starts with focal involvement, patients become quadriplegic and unable to speak, swallow and ultimately to breathe.200, 201 A small percentage of patients may survive beyond five years,202 particularly with ventilators and feeding tubes, although centers specializing in the care of patients with advanced ALS report that with counseling, very few of them choose assisted ventilation.203

For predicting prognosis in ALS, several characteristics of the disease are important to remember:

Numerous ALS rating scales have been developed to help predict ALS prognosis for use in drug intervention trials.207, 208, 209, 210, 211, 212 Although the predictive value of some are excellent, they are meant to grade patients in all stages of the disease. Their clinical complexity precludes their use by most hospice staffs, and many medical directors, without special training.213 More importantly, the only factor that is critical in end-stage ALS is respiratory function. The other variables considered in these rating systems, e.g. muscle strength, bulbar function other than swallowing, and upper and lower extremity function, are irrelevant in predicting six-month prognosis.

Examination by a neurologist within three months of assessment for hospice is advised, both to confirm the diagnosis and to assist with prognosis.

The following factors may define those ALS patients with expected survival of approximately six months. These patients generally fit one of the following categories

  1. Both rapid progression of ALS and critically impaired ventilatory capacity.

  2. Both rapid progression of ALS and critical nutritional impairment, with a decision not to receive artificial feeding.

  3. Both rapid progression of ALS and life-threatening complications.

  1. Rapid progression of disease and critically impaired ventilatory capacity.

    1. Rapid progression of ALS.

      The patient should have developed most of their disability within the past 12 months. Patients with slow progression may survive for longer periods, although clinical judgment may still indicate they may be within six months of death.

      Examples would include, within the past year:

      1. Progressing from independent ambulation to wheelchair- or bed-bound.

      2. Progressing from normal to barely intelligible or unintelligible speech.

      3. Progressing from normal to blenderized diet.

      4. Progressing from independence in most or all Activities of Daily Living (ADL's) to needing major assist by caretaker in all ADL's.

    2. Critically impaired ventilatory capacity.

      The patient should have, within the past 12 months, developed extremely severe breathing disability. Examples include:

      1. Vital Capacity (VC) less than 30% of predicted.

      2. Significant dyspnea at rest.

      3. Requiring supplemental oxygen at rest.

      4. Patient declines intubation or tracheostomy and mechanical ventilation.

        Note: Patients who are already on assisted ventilation, whether by negative-pressure external means (e.g. Cuirass) or positive-pressure through tracheostomy, may survive for periods considerably longer than six months unless there is a life-threatening comorbid condition, e.g. recurrent aspiration pneumonia.

  2. Rapid progression of ALS and critical nutritional impairment.

    1. Rapid progression of ALS. Please see I.A. above.

    2. Critical nutritional impairment.

      Most ALS patients develop swallowing difficulties early in the illness, so that gastrostomy feeding is reasonable.

      However, some patients with end-stage or rapidly-advancing ALS may choose not to undergo artificial feeding.

      These patients may have a prognosis of less than six months if their oral intake of nutrients and fluids is insufficient to sustain life.

      Nutritional impairment may be documented by:

      1. Continued weight loss.

      2. Dehydration or hypovolemia.

  3. Rapid progression of ALS and life-threatening complications.

    1. Rapid progression of ALS. Please see I.A. above.

    2. Life-threatening complications.

      1. Recurrent aspiration pneumonia.

        This may occur whether or not the patient is receiving tube feedings.

      2. Decubitus ulcers, multiple, Stage 3-4, particularly if infected.

      3. Upper urinary tract infection, e.g. pyelonephritis.

      4. Sepsis.

      5. Fever recurrent after antibiotics.

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  94. Neaton et al., op cit.

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  117. Christensen E et. al. Updating prognosis and therapeutic effect evaluation in cirrhosis with Cox's multiple regression model for time-dependent variables. Scand J Gastroenterol 1986;21:163-74.

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  132. Lebrec D. Op. cit.

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  137. Powell WJ et al. Duration of survival in patients with Laennec's cirrhosis. Am J Med 1968;44:406-20.

  138. D'Amico G et al., op. cit.

  139. D'Amico G et al., op. cit.

  140. Brenner BM. Brenner and Rector's The Kidney. Philadelphia, PA: WB Saunders, 1996.

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  142. Port FK. End-stage renal disease: magnitude of the problem, prognosis of future trends and possible solutions. Kidney Int 1995;48:S3-S6.

  143. Khanna R et al. Choosing a dialysis therapy: introduction to a mini-symposium. Am J Kidney Dis 1984;4:217.

  144. Schaefer JH et al. Outcome prediction of acute renal failure in medical intensive care. Intensive Care Med 1991;17:19-24.

  145. Chertow GM et al. Prognostic stratification in critically ill patients with acute renal failure requiring dialysis. Arch Int Med 1995;155:1505-11.

  146. Brenner BM, op.cit.

  147. Chertow GM et al, op. cit.

  148. United States Renal Data System. Comorbid conditions and correlations with mortality risk among 3399 hemodialysis patients. Am J Kidney Dis 1992;20:32-8.

  149. Chertow GM et al, op. cit.

  150. Brenner BM, op.cit.

  151. Chertow GM et al, op. cit.

  152. Groeneveld ABJ et al. Acute renal failure in the medical intensive care unit: predisposing and complicating factors and outcome. Nephron 1991;59:602-10.

  153. United States Renal Data System, op. cit.

  154. Chertow GM et al, op. cit.

  155. Ibid.

  156. McCarthy JT. Prognosis of patients with acute renal failure in the intensive care unit: a tale of two eras. Mayo Clin Proc 1996;71:117-26.

  157. Groeneveld ABJ et al, op. cit.

  158. United States Renal Data System, op. cit.

  159. Ibid.

  160. Ibid.

  161. Chertow GM et al, op. cit.

  162. Port FK, op. cit.

  163. Mc Carthy JT, op. cit.

  164. Groeneveld ABJ et al, op. cit.

  165. United States Renal Data System, op. cit.

  166. Salomone M et al. Dialysis in the elderly: improvement of survival results in the eighties. Nephrol Dial Transplant 1995;10:60-4.

  167. Chertow GM et al, op. cit.

  168. Ibid.

  169. Shabar E et al. Improved survival of stroke patients during the 1980's: The Minnesota Stroke Survey. Stroke 1995;26:1-6.

  170. Gladman J et al. Predicting the outcome of acute stroke: prospective evaluation of five multivariate models and comparison with simple methods. J Neurol Neurosurg Psych 1992;55:347-51.

  171. Chambers et al. Prognosis of acute stroke. Neurology 1987;37:221-5.

  172. Viitanem M et al. Determinants of long-term mortality after stroke. Acta Med Scand 1987;221:349-56.

  173. Howard G et al. Community hospital-based stroke programs: North Carolina, Oregon and New York III. Factors influencing survival after stroke: proportional hazards analysis of 4219 patients. Stroke 1986:17:294-9.

  174. Henley S et al. Who goes home? Predictive factors in stroke recovery. J Neurol Neurosurg Psych 1985;48:1-6.

  175. Allen CMC. Predicting the outcome of acute stroke: a prognostic score. J Neurol Neurosurg Psych 1984;47:475-80.

  176. Base E. Cardiopulmonary arrest: pathophysiology and neurologic complications. Ann Int Med 1985;103:920-7.

  177. Dougherty J et al. Hypoxic-ischemic brain injury and the vegetative state: clinical and neuropathologic correlation. Neurology 1981;31:991-7.

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  179. Hamel MB et al. Identification of comatose patients at high risk for death or severe disability. JAMA 1995;273:1842-8.

  180. Barnford J et al. The frequency, causes and timing of death within 30 days of a first stroke: The Oxfordshire Community Stroke Project. J Neurol Neurosurg Psych 1990;53:824-9.

  181. Dennis M et al. Long-term survival after first-ever stroke: The Oxfordshire Community Stroke Project. Stroke 1993;24:796-800.

  182. Turney T et al. The natural history of hemispheric and brainstem infarction in Rochester, Minnesota. Stroke 1984;15:790-4.

  183. Wade D et al. Recovery after stroke: the first 3 months. J Neurol Neurosurg Psych 1985;48:7-13.

  184. Murden RA et al. Recent weight loss is related to short-term mortality in nursing homes. J Gen Int Med 1994; 9:648.

  185. Dwyer JT et al. Changes in relative weight among institutionalized elderly adults. J Gerontol 1987; 42(3):246.

  186. Marton KI et al. Involuntary weight loss: diagnostic and prognostic significance. Ann Int Med 1981; 95:568.

  187. Rudman D et al. Antecedents of death in the men of a Veteran's Administration nursing home. J Am Geriatr Soc 1987; 35:496.

  188. Corti M-C et al. Serum albumin level and physical disability as predictors of mortality in older persons. JAMA 1994; 48:1173.

  189. Agrawal N et al. "Predictive ability of various nutritional variables for mortality in elderly people." Am J Clin Nutr 1988; 48:1173.

  190. Phillips P et al. "Grip strength, mental performance and nutritional status as indicators of mortality risk among female geriatric patients." Age and Aging 1986; 15:53.

  191. Hanrahan P et al. "Survival time among end-stage demented hospice patients." NR253, presented at annual conference of American Psychiatric Association, Miami, Florida, 1995.

  192. Caroscio JT et al. Amyotrophic lateral sclerosis: its natural history. Neurol Clinics 1987;5:1-8.

  193. Ringel SP et al. The natural history of amyotrophic lateral sclerosis. Neurology 1993;43:1316-22.

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  195. Haverkamp LJ et al. Natural history of amyotrophic lateral sclerosis in a database population. Brain 1995;118:707-19.

  196. Smith RA et al. Recombinant growth hormone treatment of amyotrophic lateral sclerosis. Muscle Nerve 1993;16:624-33.

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  198. Durrleman S et al. Increasing trends of ALS in France and elsewhere: are the changes real? Neurology 1989;39:768-73.

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  203. Jablecki, CK, Personal communication.

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  205. Haverkamp LJ et al. Op. cit.

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  211. Jablecki CK et al, op. cit.

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  213. Jablecki CK et al, op. cit.

  214. Adapted from Jacox A et al, Management of Cancer Pain.. US Department of Health and Human Services, AHCPR Publication No. 94-0592, March 1994.

APPENDIX I. MEDICAL GUIDELINES FOR DETERMINATION OF PROGNOSIS: TYPE, STRENGTH AND CONSISTENCY OF EVIDENCE

These guidelines were constructed whenever possible on the basis of evidence from the medical literature concerning early mortality in non-cancer diseases. This evidence may be grouped in the following categories:214

  1. Meta-analysis of multiple, well-designed controlled studies.

  2. At least one well-designed experimental study.

  3. Well-designed, quasi-experimental studies:

    1. Nonrandomized controlled.

    2. Single group pre/post.

    3. Cohort.

    4. Time Series.

    5. Matched case-controlled.

  4. Well-designed non-experimental studies.

    1. Comparative and correlational descriptive and case studies.

  5. Case reports and clinical examples.

    Strength and consistency of evidence may then be sorted as follows:

    1. There is evidence of Type I or consistent findings from multiple studies of Types II, III or IV.

    2. There is evidence of Types II, III or IV, and findings are generally consistent.

    3. There is evidence of Types II, III or IV, but findings are inconsistent.

    4. There is little or no evidence, or there is Type V evidence only.

There has been no attempt in these Guidelines to classify each recommendation individually. In general, most of these Guidelines would be classified as within Group B, with a number in Groups A and C. With further more targeted research on mortality in end-stage non-cancer disease, it would be expected that Guidelines would evolve upward in this classification to Categories A or B.

APPENDIX II. KARNOFSKY PERFORMANCE STATUS SCALE DEFINITIONS RATING (%) CRITERIA

Able to carry on normal activity and to work; no special care needed.   100   Normal no complaints; no evidence of disease.
90 Able to carry on normal activity; minor signs or symptoms of disease.
80 Normal activity with effort; some signs or symptoms of disease.
Unable to work; able to live at home and care for most personal needs; varying amount of assistance needed. 70 Cares for self; unable to carry on normal activity or to do active work.
60 Requires occasional assistance, but is able to care for most of his personal needs.
50 Requires considerable assistance and frequent medical care.
Unable to care for self; requires equivalent of institutional or hospital care; disease may be progressing rapidly. 40 Disabled; requires special care and assistance.
30 Severely disabled; hospital admission is indicated although death not imminent.
20 Very sick; hospital admission necessary; active supportive treatment necessary.
10 Moribund; fatal processes progressing rapidly.
0 Dead
Oxford Textbook of Palliative Medicine, Oxford University Press. 1993;109.

APPENDIX III. NEW YORK HEART ASSOCIATION (NYHA) FUNCTIONAL CLASSIFICATION

Class I. Patients with cardiac disease, but without resulting limitation of physical activity. Ordinary physical activity does not cause undue fatigue, palpitation, dyspnea, or anginal pain.
Class II. Patients with cardiac disease resulting in slight limitation of physical activity. They are comfortable at rest. Ordinary physical activity results in fatigue, palpitation, dyspnea, or anginal pain.
Class III.   Patients with marked limitation of physical activity. They are comfortable at rest. Less than ordinary activity causes fatigue, palpitation, dyspnea, or anginal pain.
Class IV. Patients with cardiac disease resulting in inability to carry on any physical activity without discomfort. Symptoms of heart failure or of the anginal syndrome may be present even at rest. If any physical activity is undertaken, discomfort is increased.

APPENDIX IV. FUNCTIONAL ASSESSMENT STAGING (FAST)

(Check highest consecutive level of disability.)

  1. No difficulty either subjectively or objectively.

  2. Complains of forgetting location of objects. Subjective work difficulties.

  3. Decreased job functioning evident to co-workers. Difficulty in traveling to new locations. Decreased organizational capacity.*

  4. Decreased ability to perform complex tasks, e.g., planning dinner for guests, handling personal finances (such as forgetting to pay bills), difficulty marketing, etc.

  5. Requires assistance in choosing proper clothing to wear for the day, season or occasion, e.g., patient may wear the same clothing repeatedly, unless supervised.*

    1. Improperly putting on clothes without assistance or cueing (e.g., may put street clothes on over night clothes, or put shoes on wrong feet, or have difficulty buttoning clothing) occasionally or more frequently over the past weeks.

    2. Unable to bathe properly (e.g., difficulty adjusting bath-water temperature) occasionally or more frequently over the past weeks.*

    3. Inability to handle mechanics of toileting (e.g., forgets to flush the toilet, does not wipe properly or properly dispose of toilet tissue) occasionally or more frequently over the past weeks.*

    4. Urinary incontinence (occasionally or more frequently over the past weeks).*

    5. Fecal incontinence (occasionally or more frequently over the past weeks).*

    1. Ability to speak limited to approximately a half a dozen intelligible different words or fewer, in the course of an average day or in the course of an intensive interview.

    2. Speech ability is limted to the use of a single intelligible word in an average day or in the course of an intensive interview (the person may repeat the word over and over).

    3. Ambulatory ability is lost (cannot walk without personal assistance).

    4. Cannot sit up without assistance (e.g., the individual will fall over if there are not lateral rests [arms] on the chair).

    5. Loss of ability to smile.

    6. Loss of ability to hold up head independently.

* Score primarily on the basis of information obtained from acknowledgeable informant and/or category.

Reisberg, B. Functional assessment staging (FAST). Psychoparamacology Bulletin, 1988; 24:653-659.

APPENDIX VI. DIAGNOSTIC IMAGINGFACTORS INDICATING POOR PROGNOSIS AFTER STROKE

  1. For non-traumatic hemorrhagic stroke:

    1. Large-volume hemorrhage on CT:

      1. Infratentorial: > 20 ml.213

      2. Supratentorial: > 50 ml.213, 213

    2. Ventricular extension of hemorrhage.213

    3. Surface area of involvement of hemorrhage > 30% of cerebrum.213

    4. Midline shift > 1.5 cm.213, 213

    5. Obstructive hydrocephalus in patient who declines, or is not a candidate for, ventriculoperitoneal shunt.213

  2. For thrombotic/embolic stroke:

    1. Large anterior infarcts with both cortical and subcortical involvement.213

    2. Large bihemispherric infarcts.213, 213

    3. Basilar artery occlusion.213, 213

    4. Bilateral vertebral artery occlusion.213, 213


APPENDIX D. WISCONSIN STATE GUIDELINES FOR MEDICARE HOSPICE CARE PROVISION IN THE NURSING HOME1

Tommy G. Thompson
Governor
State of Wisconsin
Department of Health and Social Services
Division of Health
Joe Leean
Secretary
1 West Wilson Street
P.O. Box 309
Madison, WI 53701-0309
Date: January 19, 1996  
To: Hospices
Nursing Homes
BQC-96-002
HSPCE _2_
NH _1_
From: Judy Fryback, Director
Bureau of Quality Compliance
 


  Guidelines for Care Coordination for Hospice Patients Who Reside in Nursing Facilities  

Regulatory concerns have resulted about the appropriate application of nursing home and hospice regulations to nursing home residents who have elected hospice services. To respnd to these concerns, and to promote compliance with both the nursing home and hospice requirements, representatives from the Wisconsin Health Care Association (WHCA), the Wisconsin Association of Homes and Services for the Aging (WAHSA), the Hospice Organization of Wisconsin (HOW) and the Bureau of Quality Compliance (BQC) met as a workgroup to assess these concerns and to develop a protocol to resolve them. The protocol that was developed is attached for your review.

One of the most significant problems identified was the nursing home regulation that requires a new Resident Assessment Instrument (RAI) when there are significant changes in a resident's or patient's condition. The workgroup developed a document called "MDS/RAP--Change of Condition," to guide care planning and to address the RAI requirements for hospice residents/ patients residing in nursing homes. This document is intended to be a tool to facilitiate the provision and coordination of care in a consistent manner, while meeting the intent of hospice and long term care regulatory requirements.

The use of this comprehensive document as a tool in planning services for hospice patients residing in nursing facilities should facilitate the coordination of care and benefit patient care.

The Bureau of Quality Compliance, along with the three associations, is planning a statewide training the implementation of these guidelines in the spring of 1996.

Please share this information with your staff. Questions regarding this information can be directed to either Barbara Woodford, Nurse Consultant, Provider Regulation Section at (608) 264-9896; or Richard Cooperrider, Supervisor, Community Based Provider Program, at (608) 267-7389.

JF/RC/BW/jh          96002.nm

NURSING HOME/HOSPICE INTERFACE

Guidelines For Care Coordination
For
Hospice Patients Who Reside in Nursing Facilities

This document was jointly produced by representatives of the Wisconsin Health Care Association (WHCA), the Wisconsin Association of Homes and Services for the Aging (WAHSA), and the Hospice Organization of Wisconsin (HOW). All rights reserved. No portion may be reproduced without written permission of these organizations.

October 1995

CONTENTS

SECTION I. Introduction and Background
SECTION II. Regulatory References
SECTION III. Contract Considerations for Hospices and Nursing Homes
SECTION IV. Clinical Protocol Development

  1. Priority Areas
  2. Plan of Care
    1. MDS Care Plan Process
    2. Examples
      1. Exhibit A
      2. Exhibit B

SECTION V. Guidelines for Inservice/Education Planning
SECTION VI. Conclusion and Acknowledgments

SECTION I. INTRODUCTION AND BACKGROUND

Persons who are eligible to access their hospice entitlement have the right to receive those services in their primary place of residence. For some individuals, their place of residence may be a nursing home. In order to protect access to hospice care for nursing home residents in Wisconsin, a statewide task force was formed in June of 1994. This task force consisted of representatives of the hospice and nursing home industries across the state.

Initially, representatives from WHCA, WAHSA, and HOW met to discuss problems arising in the interface between hospice and nursing homes. Most of these problems result from differences in the application of both nursing home and hospice regulations to those nursing home residents who have elected hospice services.

A clinical workgroup was appointed to address what many considered the most pressing problem in the hospice/nursing home interface: anticipated changes in patient condition which could potentially trigger the need for a new Minimum Data Set (MDS), as required by nursing home regulations. This workgroup developed a draft MDS/RAP change of condition document to guide care planning and address MDS regulatory requirements for nursing home residents who elect hospice services. The draft was presented to representatives from the Wisconsin Division of Health, Bureau of Quality Compliance, who were favorably impressed and recommended field testing of the document. Field testing commenced in the fall of 1994 following distribution of the document to all Wisconsin hospices and nursing homes that are members of the three statewide organizations. It concluded six months later. Minor changes recommended as a result of the field testing were incorporated into Section IV.B. (MDS Care Plan Process).

Concurrent with field testing, this work group continued to meet to address other clinical issues. Two additional work groups were formed to address other significant issues impacting coordination of hospice care in the nursing home. One work group was given the task of developing guidelines to deal with contractual issues; the other work group dealt with educational issues. These three work groups' efforts comprise the Clinical Protocols, Contract, and Education sections of the guidelines.

This comprehensive document is not intended to be a "blueprint" for providers, but rather a tool to facilitate care coordination in a consistent manner, while maintaining regulatory compliance. Nursing homes and hospices engaging in collaborative arrangements are encouraged to structure their individual relationships in a manner that reflects their unique mission, community needs, and patient populations.

The Bureau of Quality Compliance reviewed this document in October of 1995 and determined that it meets both hospice and nursing home regulations in the State of Wisconsin.

SECTION II. REGULATORY REFERENCES

Protocols and guidelines outlined in this document were developed with consideration for existing state and federal regulations. References include:

42 CFR Part 418, Hospice

Health Care Financing Administration (HCFA), State Operations Manual and Hospice Interpretive Guidelines

Chapter HSS 131, Hospices, Wisconsin Administrative Code

Chapter HSS 132, Nursing Home Rules, Wisconsin Administrative Code

42 CFR Part 483, Medicare and Medicaid; Requirements For Long Term Facilities

SECTION III. CONTRACT CONSIDERATIONS FOR HOSPICES AND NURSING HOMES

Introduction

The following list of key considerations during hospice/nursing home contract negotiations is meant to assist providers in effectively coordinating provider services to the hospice patient receiving routine home care who resides in a nursing home. While by no means all-inclusive, these factors reflect many provisions found in the hospice and nursing home regulations and were compiled from comments and guidance distributed by authoritative state (Bureau of Quality Compliance) and federal (Health Care Financing Administration) sources.

The information which follows is specifically pertinent to the routine home care contract. It is not intended to comprehensively address considerations for inpatient and respite care, which hospices and nursing homes may elect to include as part of the same contract or as separate contracts. Providers are encouraged to review the following contract considerations, but since the listing is not exhaustive, are cautioned to also review their respective regulations, insurance and liability concerns, financial position and attorney's advice prior to entering into any formal contract.

* * * * * *

CONSIDERATIONS FOR THE HOSPICE "ROUTINE HOME CARE" CONTRACT

  1. Administrative Concerns and Core Services Requirements

    1. The hospice/nursing home agreement must be in writing.

    2. The written agreement must specify that (1) the hospice takes full responsibility for professional management of the patient's hospice care, and (2) the nursing home provides room and board.

    3. Hospice must provide the same services otherwise offered if the patient was in a private residence, including necessary medical services and inpatient care arrangements.

    4. Identify a dispute resolution mechanism to be utilized in the event of disputes.

    5. Hospice may not discharge a hospice patient at its discretion, even if care promises to be costly or inconvenient.

    6. Statute/regulation prohibits a hospice from discontinuing care due to inability of the patient to pay for care.

    7. References to specific government agencies can often be misleading and should be omitted from contract language. Refer more generally to "state" (or "federal") regulations, rather than "HCFA," "BQC," etc.

    8. Admission criteria and requirements must be identical for all individuals regardless of pay source.

    9. Specify the exact services, and extent of services, that will be provided individually by the hospice and nursing home.

    10. Specify the exact responsibilities of each provider in the provision, and coordination, of care and services.

    11. Substantially all core services must be routinely provided "directly" by hospice employees, and must not be delegated. (Interpretation of "directly" is that the person providing the service for the hospice is a hospice "employee." "Employee" includes paid staff and volunteers under the jurisdiction of the hospice (see 42CFR 418.3).

    12. Hospice must provide the following core services through its own employees:

      • physician services
      • nursing services
      • medical social services
      • counseling services
    13. Hospice may not contract with the nursing home to provide core services.

    14. The nursing home may provide non-core services, if hospice assumes management responsibility for these services, and, assures that these services are performed in accord with hospice policy and the plan of care.

    15. Room and board services to be provided by the nursing home include:

      • personal care services
      • assistance with ADLs
      • administration of medications
      • social activities
      • room cleanliness
      • supervision/assistance with DME use and prescribed therapies
    16. Hospice must include the patient's primary physician in the care planning process.

    17. Hospice certification and licensure does not require designation of a primary caregiver, although individual hospices can require this as a prerequisite to admission.

    18. Identify the terms and procedure for formal review and renewal of the hospice/nursing home relationship on a regular basis.

  2. Coordination of Services

    1. At the time each hospice patient/resident is admitted to the facility, the nursing home must have physician orders for the person's immediate care.

    2. Both providers must specify who obtains, and who retains, the supply of emergency medications.

    3. All information relevant to the patient's care must be shared and contained in the medical records compiled by both the hospice and nursing home. (Caution: The term "relevant" must be interpreted broadly enough to avoid inadvertently failing to share marginally relevant information.)

    4. Except where dictated by state or federal regulations, identify which provider will retain "originals" and which provider will retain "copies" of pertinent documents in the medical record.

    5. Specify a procedure for the prompt and orderly relay of general information, MD orders, etc., between the providers.

    6. Specify a procedure that clearly outlines the chain of communication between the hospice and nursing home in the event a crisis or emergency develops.

    7. Identify who will be responsible for completing various parts of the MDS document. (It is, ultimately, the responsibility of the nursing home to make sure the MDS is completed, signed and dated.)

    8. Indicate whether hospice patients will be allowed to use their own medications. If so, the expiration date and labelling requirements of HSS 132 must be satisfied.

    9. The hospice and nursing home must jointly coordinate, establish, and agree upon a single plan of care to be used by both providers. This coordinated single plan of care must be implemented according to accepted professional standards of practice.

    10. The coordinated plan of care must specifically identify the respective care and services which the nursing home and hospice will provide.

    11. Aside from responsibilities that are part of the core requirements, include a statement that the plan of care must specify who is responsible for carrying out various patient interventions.

    12. Specify the chain of communication to be followed between the hospice and nursing home whenever a change of condition occurs and/or changes to the plan of care are indicated.

    13. All changes in the plan of care must be immediately communicated to the other provider.

    14. Each provider must be aware of the other's responsibilities in implementing the plan of care.

    15. Hospice must ensure that hospice services are always provided in accordance with the plan of care, in all settings.

    16. Hospice may involve nursing home personnel in administration of prescribed therapies in the patient's plan of care only to the extent that hospice would routinely utilize the patient's family/caregiver in implementing the plan of care.

    17. Hospice is responsible for making all inpatient care arrangements.

  3. Employment Issues

    1. A key consideration for both the hospice and nursing home is the extent to which services will be directly provided by hospice with its own staff, since hospice receives the payment.

    2. A hospice may use contracted employees for core services only during:

      • periods of peak patient load
      • extraordinary circumstances
    3. Nursing home employees may also be employed by the hospice to serve hospice patients.

    4. For purposes of a hospice, "employee" is defined in 42 CFR 418.3.

    5. Essential requirements for nursing home employees who are also employed by hospice to perform core services include:

      • accurate time records
      • clear delineation of responsibilities (intent is to avoid allegations of dual reimbursement.)
  4. Reimbursement Issues

    The following chart briefly summarizes various reimbursement mechanisms for hospice care provided in a nursing home:

    Medicaid Reimbursement Medicare/Medicaid
    (Dual Entitlees)
    Medicare Private Pay/ Insurance
    T.19 pays hospice rate for routine home care plus room and board at 95% of nursing home's Medicaid rate. Hospice reimburses nursing home in accordance with contract. (NOTE: Hospice may contract with nursing home for services covered by hospice (e.g., supplies, pharmacy, DME, OT, PT, speech, CNAs). T.18 pays hospice rate for routine home care.

    T.19 pays hospice at 95% of nursing home's Medicaid rate. Hospice reimburses nursing home in accordance with contract. (NOTE: Hospice may contract with nursing home for services covered by hospice (e.g., supplies, pharmacy, DME, OT, PT, speech, CNAs).
    Patient must either*

    Elect the Medicare Hospice Benefit (Medicare pays hospice routine home care, and nursing home bills patient or private insurance);

    or,

    Elect normal Medicare (revoke hospice benefit). Nursing home bills Medicare. Hospice may provide service and bill patient or private insurance.
    Nursing home bills patient or private insurance.

    Hospice bills patient or private insurance.
    * In rare cases, if it can be demonstrated that skilled nursing care as defined by Medicare is needed for care not related to the terminal illness, Medicare Part A will pay for nursing home care under normal Part A Medicare and hospice care under the Medicare Hospice Benefit.

***************

SAMPLE PROVISIONS FOR INCLUSION
IN A
HOSPICE/NURSING HOME CONTRACT

Developed by Jan A. Erickson, Director of Legal Services,
Wisconsin Health Care Association; and Mary H. Michal, Shareholder,
Reinhart, Boerner, Van Deuren, Norris & Rieselbach, S.C.

On behalf of the Hospice/Nursing Home Task Force, the following sample contract provisions have been compiled for review or use by providers when developing the format of a hospice-nursing home contract. Since it is essential that the contract process be individualized to best meet the particular circumstances of the contracting parties, these sample provisions are intended for general reference only.

This document does not purport to be all-inclusive or "model" in nature. It will likely need to be changed in at least several respects to accurately conform to the intentions of each party. For example, exact terms used in the "Definitions" section will probably vary among providers and certain other sections might be more easily addressed in combination under one general topic heading. In addition, providers may prefer to include additional provisions and sections which are not included among the samples in order to provide greater detail and clarity to their agreement. Therefore, while providers should feel free to review these sample provisions (as well as others) during preliminary contract negotiations, the format of their actual contract should always reflect the individuality of their specific relationship.

***************

RECITALS

Definitions (particularized to individual needs and terminology):

Attending Physician
Care Manager
Covered Services
Facility
Hospice
Hospice Care
Hospice Medical Director
Hospice Services
- Routine Home Care
- Inpatient Respite Care
- Continuous Care
- Inpatient Acute Care
Informed Consent
Interdisciplinary Group
Non-covered Services
Nursing Home Medical Director
Patient Care Management
Plan of Care
Residential Hospice Patient
Respite Care
Room and Board Services
Other Pertinent Definitions as Identified by the Parties

Eligible Residents (criteria):

Medicaid Eligible
Medicare Eligible
Medicaid/Medicare (Dual Entitlees)
Private Insurance or HMO
Private Pay
Other Pertinent Sections As Identified By The Parties

Coordination of Services:

Admission Procedures (general process, written orders, authorizations)
Patient Care Management (decision process, delegation of responsibility)
Continuity of Care (transfers between levels of care, actions requiring patient notice)
Communication Process (detail the process generally and for emergencies)
- notification of MD (change of condition, death, etc.)
- notification of hospice
Interdisciplinary Team Meetings
Quality Assurance Program
Drugs and Pharmaceuticals
Medical Equipment and Medical Supplies
Transportation and Ambulance
Family Services and Bereavement Care
Other Pertinent Sections As Identified By The Parties

Hospice Duties, Responsibilities and Services:

Hospice Services (general coverage under Routine Home Care)
Provision of Core Services
Compliance with Law (including licensure, staff qualifications)
Hospice Patient Care Management
Management of the Terminal Illness: Plan of Care
Medical Orders: Responsibilities of Attending Physician
Medical Order Procedures
Documentation (clarification of respective duties, location of original medical record)
Confidentiality of Medical Record
Orientation and Education
Other Pertinent Sections As Identified By The Parties

Facility Duties, Responsibilities and Services:

Facility Services (generally, room and board, specific services, plan of care, cooperation with hospice in identified areas, bedhold policy)
Compliance with Law (including licensure, staff qualifications)
Availability of Nursing Home Care (hours of care, adequate services, personnel)
Documentation (clarification of respective duties, location of original medical record)
Facility Staff Privileges: Hospice Medical Director
Access to Documents (medical/business records, federal record retention requirements for facility, subcontractors)
Orientation and Education
Other Pertinent Sections As Identified By The Parties

Financial Responsibility:

Responsibility of the Hospice
Responsibility of the Facility
Reimbursement
- Medicaid Patients
- Medicare Patients
- Medicaid/Medicare Patients
- Private Pay/Insurance Patients
Purchase of Services by the Hospice from the Facility
Other Pertinent Sections As Identified By The Parties

Insurance and Indemnification

Joint Review of Hospice Services (quality, appropriateness)

Compliance with Government Regulations

Relationship Between the Parties

Conflict Resolution Process

Term of the Agreement (length, renewals)

Termination of the Agreement (for cause/without cause, events precipitating, regulatory implications, resident transfers and single-case continuation agreements, resident notice timeframes)

Amendments to the Agreement

Notice Requirements (form, method, delivery)

Miscellaneous (including Non-discrimination Policy)

Other Pertinent Sections As Identified By The Parties

Appendices (if desired, may include references to provider policies, clinical protocols and procedures; see also: "Clinical Protocols" and "Educational Planning" documents for possible policies and protocols.)

The preceding information and documents were developed and compiled by Attorney Jan A. Erickson, Director of Legal Services for Wisconsin Health Care Association, and Attorney Mary H. Michal, a Partner in the law firm of Reinhart, Boener, van Deuren, Norns & Rieselbach, S.C., for the Wisconsin Hospice Nursing Home Task Force. These items may not be reproduced without the express written consent of either one of the authors, Hospice Organization of Wisconsin, or Wisconsin Health Care Association.

SECTION IV. CLINICAL PROTOCOL DEVELOPMENT

Effective coordination of care that assures patient needs as well as regulatory requirements are met, necessitates careful planning by both the nursing home and the hospice. The development of policies and protocols that define care coordination issues is essential to ensure consistent quality.

A. PRIORITY AREAS

Priority areas have been identified for consideration in the development of clinical protocols:

Admission process
Physician orders
Supplies and Medications
Medical Record Management
Hospice Core Services
Death Event
Quality Assurance
Emergency Care

Admission Process:

Protocols should be developed that clarify the process of admitting a current nursing home resident to the hospice program, a current hospice patient to the nursing home, and lastly for the simultaneous admission of a patient that is new to both the hospice and the nursing home.

ADMISSION: REFERRAL OF NURSING HOME RESIDENT TO HOSPICE

ADMISSION: REFERRAL OF HOSPICE PATIENT TO NURSING HOME

ADMISSION: SIMULTANEOUS REFERRAL TO NURSING HOME/HOSPICE

Physician Orders:

Hospice is responsible for securing medical orders and assuring they are consistent with the hospice philosophy.

Supplies and Medication/Contracted Services:

Supplies and medications related to the management of the terminal illness are the responsibility of the hospice. The nursing home and hospice shoudl coordinate obtaining and monitoring the following supplies and services according to the terms of their contract:

Medical Record Management:

Hospice Core Services:

Core services as defined in the Federal Register includes nursing services, medical social services, physician services (medical director), and counseling services. These services are to be provided routinely by the hospice employees.

Nursing services

Medical Social Services

Counseling Services

Physician Services

Other (non-core) services

Death Event:

Protocols should be established that define mutual responsibilities at the time of death:

Quality Assurance:

Emergency Care:

Emergency care is defined as unexpected and may be related or unrelated to the terminal illness.

B. PLAN OF CARE

The nursing home and hospice must coordinate, establish, and agree upon one plan of care for both providers which reflects the hospice philosophy, and is based on the inidividual's needs and unique living situation in the nursing home. Each nursing home and hospice should develop policies and protocols to accomplish the MDS/RAP care plan process.

1. MDS CARE PLAN PROCESS

General Framework for Decision-Making:

Nursing homes are required to complete a minimum data set (MDS) for residents upon admission to the nursing facility. The MDS is to be reviewed and updated quarterly and annually. In addition, a new MDS is to be generated upon a change of patient condition. There are a series of criteria which, when present in a patient in various combinations or alone, can trigger the need to generate a new MDS.

Recommendation #1:

The task force recognized the importance of the initial MDS, as well as the quarterly and annual reviews of the MDS, and strongly encouraged that this information be shared, if not jointly developed, by the hospice and nursing home. It is essential that the hospice core team and the nursing home staff both device patient care decisions from the same core set of patient data.

The task force reviewed the fact that many of the patient-change criteria that can trigger the need for generation of a new MDS for a terminally ill or dying patient are, in fact, changes that are a natural, expected outcome of the progression of a terminal illness and/or the dying process. In these situations, the patient care benefits of generating a new MDS are minimal at best, and are far outweighed by the intrusion to the patient that the process of developing a new MDS entails. To address this fact, the task force developed the following statement to govern the decision-making process relating to a change-of-condition MDS.

Recommendation #2:

When a patient changes from a maintenance/curative course of care to hospice palliative, the initial change-of-condition minimum data set (MDS) is the final change of condition are anticipated and documented as part of the progression of the terminal illness and/or dying process. Quarterly and annual reviews are still required.

Illustrated as a process, this statement would look as follows:

TRIGGER Change in Patient Condition (after hospice election)
NOTIFY AND REVIEW Nursing home reports change to hospice and initiates a RAP review jointly with hospice staff
DECISION The hospice and nursing home staffs make a two-fold determination: (a) is the change in condition related to the progression of the terminal illness?, and (b) was the change already anticipated and documented on the MDS?
If "YES" to both questions: If "NO" to one or both questions:
ACTION No new MDS generated; hospice and nursing home staff address change through plan of care New MDS must be generated by the nursing home staff and/or hospice and shared by the two agencies

It was the consensus of the task force that revisions could be made in a provider's approach to the MDS process that would protect quality of care for patients by forcing a review of the patient condition against the changes expected and documented as part of the progression of the terminal illness and/or dying process, without triggering in a rote manner an intrusive MDS that, in many instances, is of little value in the care of the terminally ill patient electing hospice.

Patient Change of Condition:

The task force reviewed, in the context of the hospice philosophy and experience, various elements of the nursing home MDS and discussed how each one relates to the progression of the terminal illness and/or dying process. Elements subject to a change in condition were divided into three categories, detailed below. Guidelines to govern the decision-making process for determination of whether a new MDS is to be generated are outlined in the following paragraphs.

  Category     Problem Areas  
Potential expected outcomes of the progression of the terminal illness and/or dying process Delirium Use of psychotropic drugs Pressure ulcers Dental care Urinary incontinence (including catheter) Behavior Problems Falls (patient at risk for) Cognitive loss/dementia Communication
Expected outcome of the progression of terminal illness and/or dying process Deydration and fluid maintenance Psychosocial changes Activities of daily living (ADL) Mood states Activities Nutritional status Visual function
Specials Physical restraints Feeding tubes

Potential, Expected Outcomes:

Certain changes in patient condition are potential, expected outcomes of the progression of the terminal illness and/or dying process. That is, while they may not be present in every terminally ill or dying patient, these changes are not unexpected and are routinely addressed by hospice personnel in the regular course of care. The fact that one of these changes should not, in the opinion of the task force, trigger a change of condition MDS provided that the change is related to the terminal illness and/or dying process, is anticipated and is documented. The value of the information generated through a change of condition MDS is of very limited value in reshaping care provided to the terminally ill or dying patient.

At the time the change in condition presents in the hospice patient residing in the nursing home, a determination should be made as to whether the change is related to the terminal illness or dying process, and whether it has been documented. If so, then a new MDS would not be triggered but, rather, the change of condition would be addressed by the hospice interdisciplinary team through the plan of care.

In evaluating the change of condition, the elements of the change as set out in Appendix F of the HCFA Nursing Home Manual should be reviewed by the nursing home staff with the hospice staff. It was understood by the task force that the hospice staff will not have working familiarity with the Manual or its criteria; this process will necessarily involve the expertise of the nursing home staff and underscores the importance of the review being a joint effort. The following grid provides sample statements that include the minimum elements to be reviewed under each RAP problem area listed. Additional elements for review may be included based on an assessment of individual patient circumstances.

  RAP Problem Area     Elements of Review  
Delirium Assess medication, psychosocial state and sensory loss.
Use of psychotropic drugs Assess medications (drug review) and side effects of medication. Adjuvant drug therapy will be utilized to provide palliative symptom management. The risk-benefit ratio evaluation regarding drug initiation and continued use, including use outside the guidelines, will be assessed by the hospice IDT/IDG and nursing home staff and documented on the clinical record by the nursing home staff.
Pressure ulcers Assess pressure ulcer versus stasis, review skin integrity.
Dental care Dental care to increase comfort may be undertaken; preventive dental care not an unexpected part of the plan of care.
Urinary incontinence (including catheter) Reduced output is a given in the progression of the terminal illness and dying process. Assess UTI, fecal impaction, CUA, diabetes, medication.
Behavior problems Assess volatility of mood, medications, and cognitive status.
Falls (patient at risk for) Safety issues can be anticipated because of physical deterioration with a terminal illness and associated adjuvant drug therapy. Assess medications, appliances, and environment.
Cognitive loss/dementia Assess functional limitations, sensory impairment, medication involvement factors, and failure to thrive.
Communication Assess components of communication, including strengths and weaknesses, and medication.

Expected Outcomes:

Certain changes in patient condition are not only expected but are a given outcome with a high probability of occurring as part of the progression of the terminal illness and/or dying process. There are no identifiable benefits of triggering a change-of-condition MDS on these criteria, provided that the hospice and nursing home staffs (1) have jointly reviewed the criteria and determined that the change of condition is linked to the terminal illness and/or dying process, and (2) this review and determination has been documented in the clinical records.

Seven of the RAP problem areas are believed by the task force to be given outcomes of the progression of the terminal illness and/or dying process. The task force discussed each area and the following sample statements were developed to address the respective RAP problem areas listed.

Dehydration and fluid maintenance - Changes in hydration status and fluid balance will occur as part of the progression of the terminal illness and/or dying process; so long as the change noted in the patient is related to that progression, the benefits of generating a change- of-condition MDS are minimal in terms of patient care and do not outweigh the intrusion of conducting the MDS.

Psychosocial changes - Changes in lifestyle and interactions will occur as part of the progression of the terminal illness and/or dying process.

Activities of daily living (ADL) - The hospice patient residing in the nursing home will become progressively more dependent on his or her activities of daily living as part of the progression of the terminal illness and/or dying process.

Mood states - The person experiencing a terminal illness, from diagnosis to death, is anticipated to have emotional fluctuations.

Activities - A decrease in or non-involvement in activities is an expected outcome of the progression of the terminal illness and/or dying process.

Nutritional status - Declining nutritional status with progressive weight loss is expected in a terminal illness.

Visual function - A decrease in visual function is anticipated with the dying process.

Special Circumstances:

Changes in patient condition which present the potential need for feeding tubes or physical restraints warrant special consideration in the judgment of the task force. Both can be classified as potential expected outcomes of the progression of the terminal illness and/or dying process; yet they are of such a nature as to merit different elements of review.

Physical restraints - The least restrictive use of physical restraints only is to be applied to enable the resident to maintain his or her highest level of functioning. This is consistent with the guidelines set forth in the HCFA Nursing Home Manual, Appendix F.

Feeding tubes - The hospice will discuss the use of feeding tubes with the patient/family as the terminal illness progresses and initiate enteral/perenteral feeding at patient/family request as consistent with the philosophy of the individual hospice.

Provided that the need for use of physical restraints or feeding tubes is driven by the progression of the terminal illness and/or dying process, it is the belief of the task force that these changes should not alone trigger a change-of-condition MDS.

2. EXAMPLES

Exhibit A:

Subject:   Nursing Home Setting

Title:   Plan of Care

Policy:   Hospice and nursing home will establish one individualized Plan of Care for the hospice patient/family in the Nursing Home Setting.

Purpose:   To plan for quality hospice care.

Special Instructions:

  1. Upon admission to hospice, the initial Plan of Care will be developed by hospice and charted.

  2. Nursing home resident to hospice:

    Hospice will do assessment and gather information from existing Plan of Care and nursing home staff. Hospice and nursing home will jointly establish the Plan of Care. Nursing home staff will initiate change-of-condition MDS/RAP as care changes focus from curative/maintenance to palliative.

    Hospice patient to nursing home:

    Hospice/nursing home will develop a Plan of Care. Nursing home will initiate change-of-care focus MDS/RAP and gather information from hospice.

  3. At initial interdisciplinary team conference after nursing home admission, hospice will address the RAP problem areas and document anticipated potential patient outcomes based on terminal disease progression and dying process on form NH 021. A copy will be placed on nursing home chart.

  4. Hospice will attend 14-day MDS/RAP review after notification by nursing home.

  5. At interdisciplinary team meeting following MDS/RAP review, the triggered RAP areas will be addressed by hospice interdisciplinary/nursing home team meeting with problems opened or rationale for not opening documented on form NH 021 with copy on nursing home chart.

  6. When a new problem is opened, hospice will document on interdisciplinary team minutes form if anticipated and related to terminal illness or if unrelated to terminal illness and provide a copy for nursing home chart.

  7. Hospice will participate in nursing home quarterly review of MDS and Care Plan.

Hospice Executive Director _________________________    Date __________
Nursing Home CEO _________________________ Date __________  

* Example reproduced with permission of Hospice of Portage County.

Exhibit B:

Care Plan Process

Purpose:   To delineate responsibility for development of one plan of care in order to meet federal regulations of both nursing home and hospice.

Policy:   Hospice patient residing at the nursing home will have one plan of care developed jointly by both staffs.

Procedure:

  1. Three Different Categories of Patients

    1. NEW PATIENT TO BOTH HOSPICE AND NURSING HOME

      1. Nursing home does initial nursing plan of care within 24 hours.

      2. Hospice-assessing RN writes on nursing home initial plan of care and brings copy back to hospice.

      3. If hospice social worker has plan of care completed, assessing hospice RN brings copy of plan of care to nursing home to be filed with initial plan of care.

      4. Proceed with MDS on Tuesday and care planning meetings on Thursday. Nursing home resident care coordinator to coordinate time with hospice patient care coordinator.

      5. Hospice social worker to complete MDS form and patient care coordinator to bring to MDS meeting.

    2. NEW PATIENT TO HOSPICE (NURSING HOME RESIDENT)

      1. Hospice-assessing RN to review nursing home plan of care; make changes on nursing home plan of care and bring copy back to hospice.

      2. Proceed with MDS on Tuesday and care planning meetings on Thursday. Nursing home resident care coordinator to coordinate time with hospice patient.

      3. Hospice social worker to coordinate MDS with nursing home social worker and patient care coordinator to bring to MDS meeting.

    3. NEW PATIENT ONLY TO NURSING HOME (CURRENT HOSPICE PATIENT)

      1. Hospice to provide a copy of plan of care and assessments.

      2. Nursing home to use hospice plan of care.

      3. Hospice social worker to do MDS form and patient care coordinator to bring to MDS meeting.

      4. Proceed with MDS on Tuesday and care planning meetings on Thursday. Nursing home resident care coordinator to coordinate time with hospice patient care coordinator.

  2. MDS AND CARE PLAN MEETING

    1. MDS to be done on Tuesday - hospice RN and patient care coordinator; nursing home resident care coordinator and RN to attend.

    2. Hospice social worker will contribute to MDS meeting with written form.

    3. Care planning meeting will be on Thursday. Family, hospice SW, RN, patient care coordinator and nursing home RN, SW and resident care coordinator will attend.

    4. NH - SW to invite family to meeting.

    5. NH - RCC to contact hospice patient care coordinator to coordinate time for meeting.

    6. MDS and care planning meetings will be done every three months.

  3. PLAN OF CARE

    1. Changes will be made on plan of care to reflect appropriate hospice care.

    2. Changes will be entered into computerized plan of care and one plan of care will be filed into both charts.

  4. IDG MEETINGS (INTERDISCIPLINARY GROUP)

    1. Nursing home will attend IDG meetings at hospice offices approximately one month after the care planning at nursing home.

    2. Patient care coordinator to coordinate and inform nursing home for attendance.

    3. Plans of care which are updated every two weeks at IDG meetings will be Xeroxed and brought to nursing home.

    4. All telephone calls to patient and families will be documented and copies provided to nursing home.

* Example reproduced with permission of Grancare Nursing Center of Green Bay.

SECTION V. GUIDELINES FOR INSERVICE/EDUCATION PLANNING

Clear communication of the basic components of the contract, the policies and protocols that guide care coordination, and the key regulations that govern both providers is essential for a successful nursing home/hospice partnership. Achieving quality outcomes for patients and their families should be the focus of all staff efforts.

Assuring effective participation by all levels of staff requires careful planning of the initial orientation following the establishment of a contract, as well as ongoing educational efforts aimed at improving efficiencies and understanding of experienced and new staff.

Suggested content for these educational efforts are separated into "Initial Orientation" and "Ongoing Education."

Initial Orientation

Introducing the hospice concept to nursing home staff may be most effectively accomplished by using an interdisciplinary approach. Representation from each of the core disciplines is ideal to establish trusting relationships and encourage professional interaction. Recommendations for inclusion in the initial orientation process are listed below.

*Note: It may be useful to group the topic areas according to individual roles of Nursing Home staff (i.e., meeting with business office and clerical staff separately from direct patient care staff to allow for questions and discussion specific to the expertise of the group.)

Clarifying the role of the hospice team in the nursing home needs to be balanced by a corresponding effort to educate hospice staff on the regulations and protocols of the nursing home. Information to be included in this effort might include the following:

Ongoing Education:

Many hospices provide periodic updates for their contracted nursing homes to review practical issues related to mutual roles and responsibilities. This provides an opportunity for dialogue, problem solving, feedback, and recognition of the cooperative relationships and the impact this collaboration has on quality care for patients. Suggested topics to include in these periodic updates:

Some hospices hold regular conferences in the nursing home on a prearranged schedule (weekly to monthly) to communicate on patient related issues. Others conduct occasional IDG meetings in the nursing home and encourage nursing home staff participation.

These suggestions, as well as the guidelines for initial orientation, are not intended to be all-inclusive. Creative approaches that foster improved understanding and communication between the nursing home and hospice providers are encouraged. The use of various "mediums" is helpful to have available in the nursing home for staff who are unable to attend scheduled inservices. These might include audio/video tapes, self-learning modules, quick reference materials, and a manual containing pertinent hospice protocols/policies.

SECTION VI. CONCLUSION AND ACKNOWLEDGEMENTS

The Wisconsin Health Care Association, Wisconsin Association of Homes and Services for the Aging, and the Hospice Organization of Wisconsin have undertaken this statewide joint venture for the purpose of protecting access to quality hospice care for eligible nursing home residents.

Through the combined efforts of the initial task force and the associated work groups, the intended outcome has been to develop guidelines and protocols for nursing homes and hospices that are:

The measure of success for this collective effort is the question of access. It is hoped that access to hospice care for nursing home residents may be protected and expanded through diligent efforts to maintain clear communication while striving to meet the unique needs of patients and their families.

WHCA, WAHSA, and HOW gratefully acknowledge the contributions of the numerous individuals who have participated in this process and the support of their organizations. The shared commitment of the statewide nursing home and hospice industries has set the tone for continued success in this collaborative process.


APPENDIX E. ACKNOWLEDGMENT LIST

Hospice of Metro Denver
Denver, CO
VISTA
Southfield, MI
San Diego Hospice
San Diego, CA
Hospice of Palm Beach County
West Palm Bech, FL
Hospice of North Central Florida
Gainesville, FL
Hospice of the North Shore
Evanston, IL
Hospice Association of Western NY
Cheektowaga, NY
Hospice of the Grand Valley
Grand Function, CO
VITAS Healthcare Corporation
Miami, FL
Hospice of the Blue Grass
Lexington, KY
Hospice of the Florida Suncoast
Largo, FL
Cabrini Center for Nursing and Rehabilitation
New York, NY
Parker Jewish Institute for Health Care and Rehabilitation
New Hyde Park, NY
Jennings Hall
Garfield Heights, OH
Frankfort Community Care Home
Kansas
Clara Baldwin Stocker Home and Convalescent Hospital
West Covina, CA
Laguna Honda Hospital and Rehabilitation
San Francisco, CA
Bethany Medical Center
Kansas City, KS
Terence Cardinal Cooke Health Center
New York, NY
Catholic Care Center
Wichita, KS
Menorah Park Center for Aging
Cleveland, OH
Montefiore Home
Beachwood, OH
Jewish Home for the Aged
San Francisco, CA
Oklahoma State Department of Health
Oklahoma City, OK
South Dakota Department of Health
Pierre, SD
Agency for Health Care Health Facilities Compliance
Tallahassee, FL
Colorado Department of Public Health and Environment
Denver, CO
Genesis ElderCare Rehabilitation
Tampa, FL
National Hospice Organization
Washington, DC
Hospice Association of America
Washington, DC
American Association of Homes and Services for the Aging
Washington, DC
American Health Care Association
Washington, DC
Robert Wood Johnson Foundation
Princeton, NJ
HCFA/Center for Medicaid and State Operations
Baltimore, MD
Wisconsin Department of Health and Family Services
Madison, WI
New Jersey Department of Health and Senior Services
Trenton, NJ


NOTES

  1. Reprinted with permission of the Hospice Organization of Wisconsin, all rights reserved.


REPORT FILES:

MAIN REPORT http://aspe.hhs.gov/daltcp/reports/impques.htm
APPENDIX A. Literature Review Methodology http://aspe.hhs.gov/daltcp/reports/impquesa.htm#appendA
APPENDIX B. National Hospice Organization's Sample Contract http://aspe.hhs.gov/daltcp/reports/impquesa.htm#appendB
APPENDIX C. Medical Guidelines for Determining Prognosis in Selected Non-Cancer Diseases and Hospice Enrollment Criteria for End-Stage Dementia Patients http://aspe.hhs.gov/daltcp/reports/impquesa.htm#appendC
APPENDIX D. Wisconsin State Guidelines for Medicare Hospice Care Provision in the Nursing Home http://aspe.hhs.gov/daltcp/reports/impquesa.htm#appendD
APPENDIX E. Acknowledgement List http://aspe.hhs.gov/daltcp/reports/impquesa.htm#appendE


PROJECT REPORTS AVAILABLE

The goal of ASPE's Medicare Hospice Benefit study was to provide general information on the role of the Medicare hospice benefit and more specific information about how end of life care is provided to institutionalized beneficiaries. Six reports wereproduced from this study:

Synthesis and Analysis of Medicare's Hospice Benefit: Executive Summary and Recommendations (report 1) briefly summarizes the methods used for each report and the findings and recommendations that emerged from each of the following reports under this study.
HTML   http://aspe.hhs.gov/daltcp/reports/samhbes.htm
PDF   http://aspe.hhs.gov/daltcp/reports/samhbes.pdf

Important Questions for Hospice in the Next Century (report 2) synthesizes the literature related to the Medicare hospice benefit and summarizes discussions with key informants on the use of hospice in nursing homes.
Executive Summary   http://aspe.hhs.gov/daltcp/reports/impquees.htm
HTML   http://aspe.hhs.gov/daltcp/reports/impques.htm
PDF   http://aspe.hhs.gov/daltcp/reports/impques.pdf

Medicare's Hospice Benefit: Use and Expenditures, 1996 Cohort (report 3) analyzes Medicare utilization and payments for hospice users in 1996.
HTML   http://aspe.hhs.gov/daltcp/reports/96useexp.htm
PDF   http://aspe.hhs.gov/daltcp/reports/96useexp.pdf

Use of Medicare's Hospice Benefit by Nursing Facility Residents (report 4) examines differences in hospice utilization and expenditures as a function of when nursing facility residents started using hospice services (i.e., before or during a nursing home stay).
HTML   http://aspe.hhs.gov/daltcp/reports/nufares.htm
PDF   http://aspe.hhs.gov/daltcp/reports/nufares.pdf

Outcomes and Utilization for Hospice and Non-Hospice Nursing Facility Decedents (report 5) compares pain management and types of services provided to dying nursing home residents receiving hospice compared to other dying residents who did not receive hospice.
HTML   http://aspe.hhs.gov/daltcp/reports/oututil.htm
PDF   http://aspe.hhs.gov/daltcp/reports/oututil.pdf

Hospice Benefits and Utilization in the Large Employer Market (report 6) reports on how hospice services are provided by 52 large employers and used by their employees, and identifies alternative approaches to designing and administering hospice benefits.
Executive Summary   http://aspe.hhs.gov/daltcp/reports/empmktes.htm
HTML   http://aspe.hhs.gov/daltcp/reports/empmkt.htm
PDF   http://aspe.hhs.gov/daltcp/reports/empmkt.pdf