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.