Despite local, state, and national efforts since the mid-1970s to adopt health care advance directives as the central tool to ensure that one’s health care wishes are known, only a minority of Americans have adopted this formal approach to detail their wishes and name their proxy.1 Meanwhile, medical innovation and technological complexity has rapidly advanced without attendant progress in integrating preferences into care decisions.2, 3 For many Americans what can be done should be done: there is comfort in knowing that “we did all we could.” The risk posed by prospectively limiting treatments in health care directives means possibly missing out on an intervention at some unspecified future date, especially in an environment of rapidly changing technology. Few Americans recognize that this unfettered dependence on technology creates “mechanical paths to death,”4 that prolong suffering and dying.5
Complicating the uncertainty of consumers, recent studies also demonstrate that physicians lack adequate tools to assist with prognosticating outcomes for individual patients.6 Physicians systematically and substantially overestimate patient survival. The survival rates of cancer and other formerly acute progressive diseases have markedly improved and morbidity has been significantly ameliorated by medications (e.g., chronic mental illness,7 HIV8). Chronic conditions are now the leading cause of death in the United States and will remain so indefinitely.9 In addition, despite a general unwillingness to make treatment limitation directives, with the increased incidence of dementia and age-related cognitive impairments many individuals make treatment decisions long before end-of-life decisions are needed. For these individuals, capacity may ebb and flow, with questions arising about whether the advance directive with proxy decision making, should be invoked.
This broadening of the dialogue in care planning and treatment decision making engages family members in a more expansive social structure that highlights the significant interrelationship between patient autonomy and the growing concerns of caregiving. Finally, even with documented evidence of patient wishes, research conducted during the past quarter century clearly shows that medical professionals and family surrogates often ignore or override patient preferences, with no consequence.10
The mix of these phenomena results in a social reality in which persons rely more on the “prevailing reality” of “default surrogacy” than any formal approach to advance directives.11 The intention to state one’s final treatment wishes with certainty in most cases is a more fluid and tentative expectation that surrogates will formulate and modify decisions in the shifting sands of time-limited clinical interventions. This situation makes the advance directive seemingly unnecessary for many and only a guide, important as it may be, for those who find themselves in roles to decide.
This transfer of decision making authority does, however, underscore the increased importance of naming a proxy to act as substitute decision maker and informing that individual about personal preferences and wishes. Although it fundamentally alters the approach of applying previously stated wishes at a later time, this process-oriented approach attempts to address the dynamic and systemic considerations consumers prefer.
Health care professionals must ensure, nonetheless, that patients and surrogates understand that the increasing complexity of their chronic disease does not necessarily threaten the possibility for continued personal growth. Nor do increasing disability, diminishing capacity, and complexity in disease management threaten the patient’s sense of dignity. The burden of disease and care is a legitimate consideration by patients thinking about discontinuing treatment, but it is not a reason for surrogates or providers to devalue those lives.
This paper provides an overview of the dynamic between the social and medical dimensions that has evolved over the last three decades in end-of-life decision making generally and in care planning specifically. Current challenges and opportunities for promoting the goals of advance care planning have moved away from legally worded directives to the more nuanced world of treatment goals and outcomes, and the more complex realm of cultural and personal preference within a diverse American society.
Critical to this discussion is the acknowledgement that those who do not have ready access to health care differ in their views on this issue. The “right to refuse”12 treatment, the tenet on which much of the advance care planning movement is based, carries significantly different meaning. In fact, representatives from disability rights groups and life protection organizations, contend that the issue of “overtreatment” from which the right to refuse emanates; causes incidents of “undertreatment” or premature discontinuation for disabled and vulnerable populations.13
To appreciate the impact of the social engagement dimension of advance care planning and in particular Americans’ readiness to engage in or avoid the delicate nature of those discussions, we begin with a recap of the historical aspects that led to the adoption of policies and legislation. Following the review, we discuss how recent changes in the way we die affect treatment options including financial incentives for providers. We also highlight efforts of advocacy groups and coalitions.