Advance Care Planning and Public Engagement. III. Barriers in the Social Realm

Reducing death to a clinical event inappropriately diminishes the personal and social dimensions of dying. Although dying occurs more often than not within a clinical setting and is nearly always “attended” by a physician, it nevertheless contains a human existential element. Humans are social beings -- all of us live and die within the context of social structures or systems, families of choice or origin, communities, and other groups, even homeless shelters. The hospice movement has made significant strides in recapturing the humanness of the dying process.³⁹

The evolution of advance care planning within the medical world initially developed as a check on or response to advancing technology and treatment, thus focusing more on the interventions themselves than on broader questions of patient preferences or quality of life distinctions that ailing patients may hold. The “good” offered by advances in medical technology was rarely refused until the unintended consequences of interventions left patients in conditions that either they or their surrogates experienced as untenable or overly burdensome. This led to the advance directive tool being used as an instrument to limit or refuse care rather than a guide to what the patient sought in the final stages of illness.

Doctors focus on curing disease and direct their clinical skills at accomplishing that, but social imperatives prevalent in health care are also in play. The principle of autonomy and the value of individual rights combined with obligations of privacy and informed consent fuel an emphasis on the disease process with less attention on the broader quality of life distinctions that the patient may value. Furthermore, the job of the clinician is to consider only the patient’s wishes regarding specific treatments. Much of the time, the advance directive was either overly broad or too narrowly specific to be useful when actual dying occurred.⁴⁰

Additionally, patients often do not share their advance directives with persons outside the medical practitioners who ask about them. This limitation includes the proxy named by the patient. Some family members who are named are reluctant to discuss them with the patient, finding it difficult to “talk about death.” Evidence also points to family members not honoring patient wishes as specified or not predicting well what the patient would have chosen.⁴¹ A number of groups have attempted to offer advance care planning instruments that focus more on these broader social dimensions.⁴²

One of the major barriers for this element of treatment planning is that the job of facilitating this discussion falls to no one within the traditional health care system. Both primary and specialty physicians focus their time on diagnosis, treatment, interventions, procedures and recovery. That is how they are trained and what they are paid to do. They focus on curing disease, and like other professions they pay attention to what they get paid for. For the most part, consumers are left to their own devices.

During the 1990s, when statewide end-of-life coalitions were active in many states, consumers had available abundant information on how to prepare for discussions or complete advance care planning documents, but those grass-root entities have, for the most part, either ceased to be or changed their focus as foundation and public dollars were redirected. Sustainability among those groups has been fragile and short-lived. State and local community coalitions must fundraise locally or seek sponsorship from public entities or health care industry sources. Coalition leaders report that charitable support is a necessary element of their ongoing efforts.⁴³ One recent report calls for a review of the “premature exit” of national funders from supporting the efforts of coalitions working directly with the public.⁴⁴

What remains a curious fact for some in the end-of-life field is the dearth of faith-based groups on a national level to assume a leadership role in addressing this issue among their congregations or members. Perhaps the issue is too private, too diverse, or too divisive. The societal, and for some, cultural bias against speaking about death encourages reticence.⁴⁵

Regardless of the reasons we use to avoid discussions about the end of life, most individuals are ill prepared to hold them. In the end, when we actually enter the final chapters of life most of us find blank pages, searching yet again outside rather than inside for the answers to what to do next. Our surrogates too, remain ill-equipped, exercising decisions based on principles of best interest rather than substituted judgment. Our inertia deprives those we love and those to whom we have entrusted our decision making of anything to guide them. Whether out of ignorance or inaction, we leave them with little or nothing to go on other than their notions of best interest. For a people so committed to the principles of autonomy and individual rights, the lack of clarity seems a bit out of character.

As recent as 50 years ago, the location of death for the majority of Americans was the home setting. That changed dramatically over the 30-year period from 1950-1980 so that by the mid-1980s more than half of all deaths occurred in hospitals throughout the United States.⁴⁶ Since its peak in 1983, there has been a slow and gradual decline of deaths in acute care settings, with the uptake occurring in homes and other institutional environments, most notably nursing homes.⁴⁷ Early decline in the number of hospital deaths was attributable to two causes, the care and treatment of specific diseases (most notably cancer and cardiopulmonary disease) and the introduction of Medicare’s Prospective Payment System within hospitals, growth in health maintenance organization enrollment, and the introduction of the Medicare hospice benefit during the mid-1980s.⁴⁸ The dramatic decline in inpatient cancer deaths (from 70 percent to 37 percent during the 1980-1998 period) accounted for much of the increase in home deaths during that time, but the increase in nursing home deaths was shared among the other leading causes of death during this period. By 2000, about a quarter of all deaths occurred in homes, about a quarter in nursing facilities, and about four in ten in hospitals. The balance occurred in outpatient facilities or other unspecified locations. The trend in increased numbers of deaths outside hospitals is expected to continue.

A variety of factors help determine the location of death, including level of aggressive treatment of specific diseases and payment mechanisms. Other factors include the existence of an advance directive,⁴⁹ Out-of-Hospital Do Not Resuscitate Orders (OOH/DNR), and enrollment in hospice.⁵⁰These treatment preferences (arguably in some cases a form of advance directive) impact the limits of treatment similar to DNR orders, which have been shown to diminish the likelihood of hospital admission for any reason.51 In the case of hospice enrollment in nursing facilities, there may be an echo effect for other residents as one study showed the presence of hospice contributes to the likelihood that other non-hospice nursing home residents will have their care managed in the facility, decreasing the likelihood of frail elderly patients with end-stage disease being admitted to intensive care for aggressive end-of-life treatment.⁵²

Findings from the Dartmouth Atlas Project⁵³ points to major concerns regarding the care of frail elderly in acute care who die of chronic ailments (the leading cause of death in the United States). In its executive summary, the Dartmouth report states: “[t]he extra spending, resources, physician visits, hospitalizations and diagnostic tests” do not buy longer life or better quality of life.⁵⁴ The report further argues that the growing reliance of technological interventions, and “rescue medicine” imposed on those dying of chronic conditions is a major factor in overall healthcare outcomes. The report concludes, “[w]hen it comes to managing chronic illnesses, greater use of hospitals and physician labor doesn’t result in additional health; the problem is waste.”⁵⁵

Expecting consumers to understand this issue of waste and then to decline acute interventions in the final stages of chronic disease, places the burden of treatment options on the wrong side of the equation. For consumers, illness staging, especially as it advances, is unfamiliar territory. The complexity and fragmentation of the health care specialization process in which as many as eight physicians may attend to a patient dealing with multiple diagnoses does not help the decision making process.⁵⁶ Incentives to aggressively treat are endemic to the current system, both financially and culturally. As an alternative, palliative care programs have only recently been introduced within acute care settings.⁵⁷

As Americans become more familiar with chronic disease management, and as outcome and evidence-based research studies point to more effective treatment modalities, sophistication in palliative care programs will help consumers incorporate new “advances” into their treatment options. This shift in thinking, however, must rely on medical professionals to bridge those emerging options with current interventions, explaining both the benefits of the latter and the limits of the former. These distinctions in quality of life and quality of care blur as patients age, chronic conditions advance, and comorbidities arise.⁵⁸ The challenges in translating these new goals of care may prove as formidable to clinicians as to consumers, and the need to customize them to meet the needs of the individual patient may be an even more daunting task as uncertainty increases with advancing disease. But to shirk from the responsibility of reconciling the distinctions is to abandon patients at their greatest time of need.

“Respect for person” obligations tie directly to the principles of autonomy and informed consent. American health care providers are sensitive to these principles first, before any medical procedure occurs. Absent the ability to secure consent (either from the patient or a named proxy) professionals rely on previously stated preferences or their own judgment on what is in the “best interest” of the patient. Historically and even in most cases today, interventions to save the life of the patient or to act to extend life is routinely considered as being in the best interest of the patient. In the past, heroic or extraordinary measures usually proved unsuccessful within a short time frame and the patient died. That is no longer the case.

Always aggressively intervening on behalf of the patient poses new risks for chronically ill frail elderly as noted above,⁵⁹ and also influences a wrinkle that has been added to advanced disease decision making process -- the shared family decision.

The social dimensions of advance care planning are evident in the care of patients with diminishing capacity. While the presumption of capacity obligates clinicians and the named or appointed proxy to assess the ability of the patient to consent to care, a growing number of patients affected by dementia or age-related cognitive impairment have surrendered their decision making to others. This transfer of decision making authority may be prompted by a clinical assessment of capacity or simply the patient’s desire for help in making healthcare decisions of all kinds. It may also be “triggered” by a single (or series of) “spring board” events pointing to the unreliability of the patient’s ability to make consistent decisions.

The requirement in most state statutes that incapacity be determined before any substituted judgment can be made complicates this matter. A proxy’s authority may vary with a patient’s clinical condition, requiring trust in the proxy’s sensitivity to the patient’s condition. However, regardless of how decision making authority is transferred, the phenomenon points to a growing trend in which advance directives are merely advisory, and substituted judgment (i.e., decision making based on patient instruction) is simply unavailable. The increased duties placed on family caregivers especially those looking after the oldest old (>85), adds to this complexity since being cared for in similar surroundings by those whom they know and love are the most often cited “health needs” identified by patients as they age.⁶⁰

This trend will only increase over time. It is now estimated that one in three of all patients will be affected by some form of dementia, prior to death.⁶¹ The expanding role of family and proxies in decisions about what is in the best interest of compromised patients along a continuum of care points again to the broader social role of caregivers and a trusted community in end-of-life decision making.

Few question the expanding role of family and trusted loved ones in the care of patients who either lack capacity or may be challenged by diminishing ability. But what happens when there is no such group of trusted persons to rely on to make decisions about quality of care and quality of life for patients in advanced disease states? How do we ensure competent care for persons who have never had the ability to make decisions for themselves? These questions lie beyond the scope of this paper; nevertheless, they point to the broader social dimension of health care decision making.

Furthermore, studies in cultural competency point to the need for health care professionals to understand the perspective of patients when caring for diverse populations in order to provide care valued by the recipient.⁶² People with disabilities and life protection groups are concerned by what they see as a “false choice” in health care.⁶³ If any person’s life is valued less than another, that individual is inherently less likely to receive the same treatment options afforded the higher valued person. The false choice begins when one or more treatment options is removed from the available list of those offered to the more highly valued (i.e., “high functioning”) person. In general, persons with disabilities believe that clinicians will judge their quality of life to be less than optimal. As a result, limits to options are imposed and persons with disabilities are restricted in their access to care, imposing a “false choice” upon the patient.⁶⁴ This argument illustrates the mistrust and disaffection that disabled persons feel regarding their treatment and the risks they perceive in end-of-life decision making.