From a social psychology perspective, the experience of dying is created by an individual’s expectation that they will die very soon, usually from a terminal illness. In epidemiological terms, this means that, in the minds of many people, the dying experience is not commonly linked to heart disease, multiple sclerosis, diabetes, or other diseases that are associated with long-term life-threatening illnesses with equally long-term medical interventions and supports. Rather it is the cancers, and especially advanced metastatic cancers, motor neuron diseases, and AIDS that are commonly associated with short life expectancies and a psychology of dying in the minds of those from the general public. This association is strengthened by the fact that these are also the most common patients seen in hospice and palliative care services.
In this way, the demographic influences on death and dying such as social class, occupation, or age function to predict physical outcomes better than the social psychology of dying. Also, the epidemiology of life-threatening diseases does not, in itself, readily suggest an identity of a dying person for just anyone with a life-threatening illness. Dying is an attitude and an expectation associated, rightly or wrongly, with very short life expectancies – usually months or a year or two. In industrial countries, this group usually emerges from the cancers, neurological, and HIV populations. However, even in psychological terms, this is not the whole story about who the dying are among us (see Kellehear, 2007).
The majority of people in industrial nations who die every year are over the age of 65. Most of these people do not die of cancer (a disease that accounts for less than 23% of all deaths in most developed nations) but of frailty, a combination of circulatory diseases, organ failure, dementia, and critical incidents such as falls or opportunistic infections (Hall et al., 2002). Up to one-quarter of those over 65 will die in a nursing home and 5–8% of all those in this age group will suffer from dementia (Florey et al., 2004). By 2050, some 114 million people worldwide will experience dementia (Wimo et al., 2003). Most of these people will not die under palliative care or even be viewed by aged care staff as dying people, even though many of these residents will view themselves as dying or soon to die (Kayser-Jones, 2002).
Furthermore, at a global population level, the fourth leading cause of death in the world (and the leading cause in Africa) is AIDS (Healey, 2003). Along with old diseases such as tuberculosis, malaria, and a dozen diarrheal diseases, AIDS has now added to the collection of infectious diseases characterizing the experience of dying for those in developing countries. Although those people living with HIV in developed countries may expect reasonable life expectancies with this disease – upwards of 10 years with regular use of antiretrovirals (Fleming, 2004: 26) – such interventions are still inaccessible or unreliable, poor quality, or interact with other antivirals to be significantly less promising for people in developed nations.
Despite the diverse epidemiology associated with aging and with AIDS, there is a tragic sociological similarity between the two illness experiences. Both groups experience significant burdens of dementia (Alzheimers disease and HIV-associated dementia (HAD)). Both groups experience high rates of depression and suicide associated with multiple losses from work, family, and friends and identity-related losses, as well as high levels of social dependency. Both groups experience high levels of stress from medical symptoms, treatment regimens, psychiatric illness, and discrimination and stigma.
Finally, both the cancer, neurological, and AIDS dying in developed countries and the poverty and elderly dying in all countries lead to significant levels of grief morbidity associated with losses, especially, but not exclusively, associated with bereavement. To this toll from dying from life-threatening illness, poverty, and aging, must be added the burden of grief and loss associated with national and international disasters as diverse as the bombing of the World Trade Center complex in New York on September 11, 2001 to the Asian tsunami disaster in 2004. Both clinical palliative care services and grief counseling services play important acute-care roles in the aftermath of these events and experiences for some people, but they are inadequate as primary health-care responses to death, dying, and loss more broadly. In other words, they are not health promotion responses.
Clinical services are not designed or adequately staffed for prevention work or for after-care work. They work well in delivering specialized medical, nursing, and psychological interventions for advanced, severe, or complex case scenarios. However, most living with loss or life-threatening illness occurs outside of institutional settings.
Furthermore, the common problems associated with aging, dying, and loss – mainly other people’s reactions and the changeability of one’s own responses to these – are social. The problems of sexual expression, work, recreation, family dynamics, discrimination, stigma, and social rejection and the effects of these on the individual – depression, despair, anger, or anxiety – have at their core the interpersonal realm of experience. Even the spiritual task of making sense of the prospect of death and the experience of loss is made that much more tolerable or sensible with the assistance of others – spiritual and pastoral helpers but also friends and family. All these psychological, social, and spiritual challenges have been a long concern for researchers in death and dying and they are all relevant targets of health promotion and community action programs.
Principles Of Health Promotion
The principles for health promotion underline the importance of adopting a population health approach. This means acknowledging that maximizing the conditions of health and well-being among the greatest number will assist in reducing overall morbidity and extend both the quantity and quality of life.
For example, to encourage families to inoculate their children against preventable childhood diseases or to encourage people to reduce or abandon tobacco smoking requires a crucial shift in community attitudes and values. Attitudes to child health and safety need to move from solely a family concern to a community concern. A healthy child is a precious and positive family experience, but it is also an asset rather than an infection hazard for other families. Attitudes to smoking as an individual right must shift to include an understanding of how smoke-free environments contribute to individual and community health and fitness but also the fact that all communities must shoulder the burden of individual health-care costs, passive smoking consequences to others, and losses to work and family from premature death and disability. Health promotion programs raise awareness about both the direct health benefits of inoculation or smoking cessation ‘and’ the additional harms that impact on others.
Another basic principle of health promotion is to emphasize the importance of prevention and harm reduction. We should always try to avoid the things that will harm us. If we cannot avoid them, then we should always attempt to reduce the harms they will attract when they eventually impact. Condom use and needle exchange programs are good examples of health promotion initiatives that promote safe sex and drug use practices with respect to HIV prevention. Car seat belts and bicycle helmets are good examples of harm-reduction strategies, understanding that when accidents become unavoidable the harms associated with these accidents might be less likely to be fatal or permanently disabling.
A third basic principle of health promotion is the participatory nature of the relationships. This means that health professionals are encouraged to work with communities rather than working on them. While information about health and awareness of hazards are essential to encourage and maintain health and safety in every community, this does not mean adopting an authority-based, didactic approach. The information might usually come from health professionals, but the means to transmit that information, the process of raising awareness and overcoming the barriers to successful community awareness, and adoption of these ideas must come from the community itself. Simply telling sex workers in Bangladesh, for example, to use condoms in their workplace ignores crucial matters in the gender and workplace politics of this kind of work in Bangladesh. The community, in this case sex workers, their clients, and their employers in Bangladesh, must be equal partners with health workers in the drive to adopt safe sex practices if this program is to enjoy any success at all. The same is true of all health promotion campaigns. The most patronizing, authoritarian programs inspire both antipathy and derision from its targets principally because they frequently display an ignorance of the culture and behaviors that underpin unhealthy or unsafe social conduct. A participatory/partnership approach is essential to the success of all health promotion programs.
Finally, a community development approach is also an essential element to health promotion. A community development approach requires recognition of three dimensions of social life. The first dimension is to take an ecological approach to health. This means that social settings or contexts of behavior are important. Although personal attitudes play an important role in behavior, it is also true that these attitudes are drawn from, moderated by, and sanctioned by the immediate setting and broader culture. Therefore, that setting and broader culture are important levers of change.
The second dimension to community development requires targeting a broader culture: Changing government policy and legislation are important elements for positive social changes that effect community health and safety. Health policy priorities, road safety, occupational health and safety and industrial relations legislation, automobile and road design, or media advertising programs are all crucial in altering the broader community context of health. This means that a part of community development always includes policy development, advocacy, and lobbying.
A third dimension to community development involves the conceptual recognition that health promotion programs do not have patients. When people are sick they come to health services, but when people are well the healthy ideas must come to them in their usual places of work and play. Information about health, and awareness of harms, should find their way into the usual settings of everyone in the community. Health is everyone’s responsibility. The workplace, school, churches and temples, or the recreational sites of clubs, theaters, or parks are potential sources of community support, learning, and resource.
Health-Promoting Palliative Care
The Ottawa Charter for Health Promotion (1986) summarized these principles as (1) building public policies that support health, (2) creating supportive environments, (3) strengthening community action, (4) developing personal skills, and (5) reorienting health services. For matters to do with death, dying, and loss, these principles translate to (1) building public policies that support people living with life-threatening illness, loss, and those caring for both; (2) creating supportive environments for those living with life-threatening illness, loss, and those caring for both; (3) strengthening community action for death, dying, loss, and care; (4) developing personal skills to cope with death, dying, loss, and care; (5) reorienting health services to enhance this support in matters to do with death, dying, loss, and care and reorienting end-of-life care services (palliative, aged, bereavement, emergency care, etc.) toward health promotion.
For palliative care services, health-promoting palliative care means adopting and adapting death education into an agenda of health education. If health education is about identifying areas of community and personal ignorance, misunderstanding or fear about health and illness and replacing these problems with information that is clear, accurate, and helpful, then the same is also true of death, dying, and loss. Ignorance leads to ignorant responses. Fear often leads to delayed help-seeking behavior and therefore delayed support and practical help. Much stigma surrounding AIDS or cancer is based on community myth or prejudice and leads to inappropriate community and individual response. The most unhelpful responses toward bereaved people come from misunderstandings about the diversity, depth, and length of bereavement experiences in the community. Both of these experiences, and many more besides, are suitable targets of health promotion programs.