At the end of 2004 the National Institutes for Health sponsored a conference of experts to clarify key questions regarding the definition of "end of life," and the factors that contribute to improved or worsened outcomes for patients and their families. The clarification was addressed to health care providers, patients and the general public. The conference issued a consensus statement78 that underscored what participants perceived to be some of the difficult aspects of the American end-of-life experience. The specific items associated with advance care planning included:
- Circumstances surrounding end of life are poorly understood, leaving many Americans to struggle through this life event.
- Services are fragmented leading to lack of continuity, impeding quality interdisciplinary care.
- Ambiguity surrounding the definition of end of life hinders the development of science, delivery of care, and communications between patients and providers.
- Subgroups of race, ethnicity, culture, gender, age, and disease states experience end-of-life care differently, and these differences remain poorly understood.
- Enhanced communication among patients, families, and providers is crucial to high quality end-of-life care.
- The design of the current Medicare hospice benefit limits the availability of the full range of interventions needed by many persons at the end of life.
Understanding and communication about the end of life remains a central concern in American health care.
Patients and families are subject to mixed messages from and among specialists, primary care physicians and nursing professionals regarding what to expect and how to plan for end of life. Confusion often ensues. Social values of security and protection are difficult to reconcile with the uncertainty of serious illness and advancing disease. Professional reluctance or reticence to speak to patients about disappointing test results also impedes communication as well. Stress heightens mistrust, doubts, and skepticism and increases the risk of isolation. Anger and fear become primary motivators and creators of interference for planning and making decisions, even in the short term. Resources become stretched, and strained relationships get tested repeatedly.
Quality of life and quality of care distinctions blur as patients progress with advancing disease. What was once thought unendurable may become the norm. End-of-life decision making forces patients and families to face the most deeply held convictions about life’s purpose and meaning. These are not easy times. Conflicts abound, internally as well as externally.
In a recent article in the Annals of Internal Medicine, Dr. Henry Perkins summarizes many of the shortfalls of advance care planning. He identifies “three faulty assumptions” that he contends proponents of advance directives miss:79
- The first assumption is that people actually think about end of life. He cites the difficulty of the subject matter, the lack of courage we have to face it and our predilection to have someone else actually make such decisions.
- The second is that advance directives somehow control future medical care. He argues, “[I]n reality, critical illness thwarts the very purpose of advance directives through the many on-the-spot decisions necessitated by unpredictable, uncertain, and complex circumstances. Thus, advance directives simply promise more control than they can deliver. They provide an unrealistic but comforting "illusion of certainty.”
- Finally, he asserts that advance directives actually complicate critical care, though we assume the opposite. Vague directives require deliberation and the ineptness of proxies may actually help confuse as opposed to clarify the issues. He adds that advance directives set standards that are too exacting to meet, and that they imply a good death fulfills a patient's every instruction, which is impossible for families and providers to achieve.
These faulty assumptions must resonate with anyone who has cared for a dying patient. However, even if we reject the notion that specific directives can be instructive or enlightening in terms of specific circumstances, proxy decision makers certainly benefit from insights and conversation with patients regarding their preferences, wishes, goals, values, and types of acceptable treatment outcomes. Proxy decision makers, though reluctant to accept their duties, often find their journey an intimate trek that presents them squarely with profound questions of life’s meaning. Many are deeply affected, if not grateful, for this work once it is completed.