Advance Care Planning as a Public Health Issue
Advance care directives often ask too much of the people who should be making them. The usefulness of making advance care directives is commonly eroded by the widespread lack of understanding about death, dying, and health care in the wider community beyond health care services. In this chapter, I argue that no health care movement in favor of advance care directives can push this separate from an equal momentum around a public health approach to EOL care that promotes and supports death education in the community. In this way, community learning about death, dying, and care is as fundamental to EOL care planning as community learning about health, fitness, and well-being is to health care planning. Understanding this linkage between advocacy of the policy and its adoption and actual practice by communities is crucial to the success and sustainability of advance care planning. Acknowledgment of the linkage between death education and the empowerment of individuals and families to make informed plans for the EOL is crucial to any future campaign to promote advance care planning (ACP) as a sustainable, nonthreatening, and community-friendly practice.
WHAT DOES ADVANCE CARE PLANNING ASK OF US?
In basic terms, advance care directives are the formalizing of our plans for what treatments we wish to have—or not have—when we near death. They can be negative statements such as advanced wishes/expectations about what treatments we will refuse to have (e.g., resuscitation, artificial ventilation, or artificial feeding), or they can be more positive preferences about what we would like to experience or receive while near death (e.g., a preference to die at home if possible, or a preference for treatments to keep us “comfortable” or pain free) (Seymour & Horne, 2011; Thomas, 2011). These plans can be informal, that is, written literally as preferences to be shared with one's family physician or residential care staff at a nursing home; or they can be more formal, as they might be when completing a “living will”; and legal as when witnessed, notarized, and/or written with legal counsel and support with provisions made for a lasting power of attorney. Either way, such provisions help prepare health care staff, families, and individual patients for future personal incapacity and/or dying.
To participate in the kinds of decisions, preferences, and planning about anticipated medical and health services matters near one's death, advance care planning requires certain basic social conditions and/or knowledge from all of those who would participate in this process. Most of the challenges to ACP are discussed earlier in this book but I will remind readers of the broad outline of their technical and sociological features for the purposes of providing a context for the role of public health activism in this area.
First and foremost, there must be a personal and family willingness to discuss matters of death, dying, and EOL care—a requirement that has associated with it a longdiscussed series of cultural, religious, and social barriers. Academic and clinical commentators have long observed how difficult, even taboo, the subject of death and dying has been to most Western societies, including the United States (DeSpelder & Strickland, 2009; Howarth, 2007). The obsession with medical rescue has made personal discussions about death and dying, or hospice and palliative care, commonly associated in the public mind with medical failure, the loss of hope, and social abandonment (DeSpelder & Strickland, 2009; Kaufman, 2005).
The second major requirement of ACP asks of all those who participate in its process an understanding of the possible health service and medical treatments commonly associated with your own possible future. These will differ widely depending on whether one is anticipating a dying from cancer, motor neuron disease, AIDS, or multiple strokes in a nursing home. The medical crises associated with a catastrophic motor vehicle accident, head injuries from falls or gunshot wounds, or from accidental or intentional poisoning are often a mystery to most people, and there are not always disease-related support associations available to help patients or families navigate the different possible scenarios. The medical and sociological technicalities surrounding determination of brain death are also difficult, not to say inaccessible, to most people in the general community. Yet a basic understanding of these is crucial in making plans for any advanced care, particularly in medical circumstances of trauma. In general, there is a
woeful lack of public understanding about life-extending, life-saving, and palliative treatments and the differences and inter-related nature of all three (Mason, Sives, & Murray, 2011).
Third, the cyclical nature of dying in modern societies makes any ultimate determination of what to do when “dying” or “near death” uncertain and contingent (Kellehear, 2007). In a context of chronic, life-threatening, or life-limiting illness, how is one to determine when one should accept “dying” or not? When is the “right time” to “let go” for patients and or their families? Do the decisions one makes when in comparative health remain relevant when one is in severe pain, anxiety, or away from one's family home? People often change their minds about inheritance as they grow older, for example, or as relationships change and evolve through different friendships, marriages, and work circumstances. The same is true of what one would wish to happen in poor health when one remains in good health. Things change, sometimes by the month, in one's view of what one would like to happen or not happen in anticipation of a collapse of personal health and well-being. How is one to decide in circumstances that are regularly changing? (Seymour & Horne, 2011, p. 21). Some philosophers take this idea of the continuity of personal identity, experience, and decision making even further by asking: In what sense is the brain-dead person still the person who originally made the advance care directive? How are we to understand the continuity of “personhood” in the presence of subsequent severe neurological damage such as occurs in dementia or brain trauma? (Buchanan, 2007; George & Harlow, 2011).
Finally, the push for advance care directives (promoting autonomy, planning, and choices) without general education about death and dying (knowing what the social, spiritual, or psychological alternatives and possibilities are) is like asking people to choose to eat better (autonomy, planning, and wise choices) when they don't understand what's in the daily food products they are buying (knowing what the alternatives are) (Watson, 2011). The public understanding of what being in a coma is like, or what dying from cancer is like in the final 24 hours, or what the final hours of dying from motor neuron disease is like is mostly slim to nothing (Kellehear, 2008).
The different challenges underlying ACP are both sociological (the reluctance to publicly and personally engage in discussions about death, dying, and care; diverse ethnic and religious understandings and preferences around individual autonomy and dignity; different understandings about personal identity and continuity) and technical (different treatment options and their differing purposes and consequences). Both sociological and technical forms of these challenges are public health challenges—not simply for health care institutions, but for everyone. Just as health care is not solely the responsibility of the unwell or ill but also the healthy and the well, so too, death, dying, and care are the responsibility of everyone,
not simply those who are old or at risk of injury or life-threatening illnesses such as cancer or HIV. Just as “healthy communities” rely on community education to make decisions about diet, exercise, avoidance of harmful substances and circumstances, as well as the protective value of certain technologies (seat belts, bicycle helmets, condoms, etc.), so too a public health education approach to death, dying, and care places public discussion about ACP squarely in the domain of a broader death education context.
It is quite common to overlook death education as a public health concern, with many clinical and academic colleagues viewing this as a specialized form of raising awareness about grief and loss and of principle interest only among “thanatologists” or counselors. However, death education is more than “raising awareness” and it addresses wider topics than simply “grief and loss.” The problem of mortality goes to the heart of living with all forms of life-threatening or life-limiting illness, living with grief, and long-term care for all these kinds of people. Death education in this way is a broad population health issue because few people are not untouched by cancer, serious accident and trauma, aging and dementia, suicide, or grief, and far greater numbers of people are also actively involved in their care as family, friends, coworkers, or neighbors. As a population health matter, death education as a form of health promotion has a number of important harm-reduction and prevention targets that are quite specific and relevant to engaging publics in their own EOL care decision making and planning.