HOW PUBLIC HEALTH CONTEXTS ADDRESS CHALLENGES AND BARRIERS TO ADVANCE CARE PLANNING
A broad-based health promotion and community development focus on death, dying, loss, and care is able to address the different challenges and barriers to ACP by providing a sustained and sustainable interest in preparing for personal trouble and grief. A concerted health promotion approach to death, dying, loss, and care, one that involves a long-term partnership between health services and key community institutions, has demonstrated a capability in breaking the taboo on the topic of death. By making concerns about serious illness, loss, or long-term care the subject of community policies in schools and workplaces, by interesting the local media in stories of personal and community resilience, and by encouraging the reduction of personal isolation during illness and care, ACP simply starts to make “common” sense. Such a context robs superstitions and fears about death of their common surprise, shock, or “morbid” appearance, allowing these topics to be assimilated into routine community and personal discussions of health and wellness.
Second, a community interested in addressing the support needs of people living with serious illness, loss, or long-term care will inevitably and invariably learn more about what these experiences entail. At the same time, they will be able to compare and contrast their own personal and cultural experiences of illness and care with those of others. They will gain comparative social and ethical perspective and a deeper understanding of social, religious, and cultural diversity in the face of mortality.
Third, at the same time as these communities become familiar with other people's experiences of illness and loss, they will also learn more about
the technical aspects of those experiences. Less confined to one-off learning experiences associated with themselves and their wider family, their own families will learn of the diseases and treatment regimes that effect other families and their struggles with illness, medical crises and decision making, or home care.
With an ever-widening potential to learn about the verities of death and dying, there will come a “naturally occurring” demand for more information about life-threatening or life-limiting illness beyond the usual life-saving information most people seek. The complexities about the determination of death, the economic arguments for and against indefinite treatments, and the vested interests and social needs behind vacating intensive care beds or of organ transplant campaigns might be discussed more openly and be subject to greater media attention and public debate.
A community interested in increasing supports for people living with serious illness, loss, and long-term care will learn or demand to learn the major EOL scenarios and care choices available for themselves and their families. The differences between intensive care dying, hospice dying, home care dying, or nursing home dying will be important to know, as well as what treatments to expect in those contexts. However, this interest and demand for more information and learning will not be a one-way street. Health services and their individual practitioners might also expect similar learning at their end of the health promotion and community development partnership.
Partnering with schools, workplaces, public media, recreation clubs, or church and temple groups will also provide health care professionals insights and awareness of the plurality and diversity of EOL care preferences and related concepts of autonomy and dignity that exist within their own health service catchment area. For many professionals, this might mean learning first hand that many preferences are not the result of superstitions or fears but rather different (and legitimate) outcomes of clear and autonomous decision making from different religious, cultural, or social beliefs. This is a realization that might lead to the further realization that ACP, for example, is for a limited few (however large the actual numbers) or that such planning may need to target groups and families rather than individuals.
For other health care professionals and services, community partnerships may raise awareness of the very significant challenges in informing publics of the different clinical purposes of the same or similar medical, pharmacological, or nursing interventions at the EOL. Such public education challenges bring with them not only challenges of explaining the complex in accessible ways but also the challenges of language/jargon translation and understanding the diversity of public audience education levels and ethical values systems. Effective public education campaigns in smoking cessation or healthy dietary promotion have also usually required
non–health service allies such as local media services and service clubs. If the local health service does not have existing links or networks in these kinds of information and social systems, this too will become an apparent need during any community partnership that places death, dying, loss, and care at the center of its service approach.
Finally, community partnerships in health promotion as outlined above can also be valuable and important to closing the gap between health services and the general public expectations and information about what to expect at the EOL. The more this gap is reduced between health services and the general public during times of health and well-being, the greater the chances of better communication, cooperation, and support for the work of health services during times of serious illness and crisis. At the same time, this helps reduce misunderstanding, ignorant and hostile responses, and poor attention to each other's needs (patients, families, and health care staff) during times of formal care and aftercare.
Overall, providing a broad health promotion and community development context for ACP ensures not only cooperation and willing interest, but most importantly, sustainable and genuine community buy-in. This provides a firmer basis for both commitment and informed choice, making ACP a true partnership with health care services rather than a policy imposition by what might otherwise be negatively viewed as a self-interested health care culture. What must American public health interests do in order to mentor these kinds of directions in their health services?