Public Health Approaches to Death

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Introduction

The history of public health has been a history of humanity’s battle with disease and premature death. In what is frequently referred to as the old public health, our early efforts in disease prevention were directed at providing access to clean water, safe housing, and more nutritious and cleaner sources of food, especially meat products. We were also concerned with matters of personal hygiene well illustrated by our recent development of body and hand washing, town sewerage systems, quarantine laws, and population-based surveillance, screening, disinfection, and inoculation (Greene, 2001).

For modern industrialized societies, these measures led to higher rates of perinatal and maternal survival, decreases in infectious diseases, and increased life expectancy at all ages (Crimmins, 2004). After World War II, diseases of aging and affluence began to occupy center stage of the public health agendas in these nations, although the problems of infectious diseases and poverty-related morbidity and mortality would continue to engage the health resources of developing countries. These long-standing patterns of morbidity and mortality would also still dog the health and welfare of marginal social groups in wealthy nations.

However, in the 1980s, helped along by new ideas about health promotion, public health filled out its vision of anti-disease public health with a complementary prohealth vision. Diseases such as circulatory illness (heart attacks, strokes, deep venous thrombosis, etc.) and cancers (especially of the bowel, skin, breast, or lung) became targets of new forms of surveillance, screening, and prevention. In societies where the quality of water, employment, and housing were excellent, people were found to be overeating, overworking, and exposing themselves to high-risk substances such as tobacco, alcohol, asbestos, or UV radiation. Sedentary lifestyles had reduced fiber and increased fat in the diet and reduced exercise and fitness levels. International and workplace migration increased social and psychological stress as well as the desire for harmful forms of release. Suicide, automobile accidents, and drug-related deaths made sharp inroads into our patterns of morbidity.

All these patterns of lifestyle and illness became targets of new prevention and harm reduction campaigns that were and remain part of so many of our recent health promotion initiatives. The basic principle here is that health, after all, is our best protection against disease and illness. Nevertheless, the fundamental point that we continually overlook in our public health literature is that no public health initiative is designed to prevent death itself. All public health policy and practice is designed to maximize the social and health service conditions that prevent disease and premature death. Our public health concerns are ‘not,’ nor ever have been, a thinly veiled pursuit of immortality. Nevertheless, recognition of the important role that health promotion approaches might play in matters to do with death, dying, and loss remains poor. Furthermore, when health promotion texts write about death and loss they frequently employ death as a threat (see Henley and Donovan, 1999). Finally, when public health discussion does turn to dying, death, and loss, these discussions are formulated in terms of direct service provision – clinical palliative care services or counselling. Direct service provision is not health promotion. The purpose of this section is to outline the role of health promotion and community development ideas and practices in the service of dying, death, and loss.

Demographic And Epidemiological Background

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.

There also needs to be a demonstrated evidence of nonclinical partnerships in palliative care. It is not the case that clinical palliative care services are ably funded to provide comprehensive health promotion programs in their various constituencies. Partnerships with community health services are essential. Alliances with women’s health, men’s health, indigenous health, gay and lesbian health, and general community health services are essential. The problem here is that many of those who work in public health believe death, dying, and loss to be the sole province of palliative or bereavement care, without acknowledging or understanding that many of these services are engaged mainly in direct service provision, not health promotion development. The recent development of public health ideas in palliative care has meant that health promotion training is ‘not’ an essential or main part of palliative care curricula in most nursing, medicine, or social work degree programs. Alliances with public health colleagues are crucial to public health reorienting their professional mission to include death and loss, and to palliative care services so that these can reorient their mission toward health promotion.

The principle of creating supportive environments is not about providing the maximum number of health-care professionals to assist people who are living with life-threatening illness or loss and those caring for both, although that kind of assistance remains important for the delivery of quality services. But creating support is more than creating more professionals. In palliative care settings, the use of support groups, not simply as places of mutual support, but also as sites for learning are important. Groups that operate on adult learning principles support their members not just psychologically and socially but also spiritually and physically. These kinds of support groups are based on the assumption that given the resources and support to try, most people will be motivated to take an interest in their own health care.

Living with a life-threatening illness is not simply about treatments for the disease but should also be about how to maintain the best possible health during the course of that illness. This is a continual learning curve. Caring for someone with a life-threatening illness is a highly stressful experience in every way: Physically, psychologically, spiritually, and socially. The services’ response to life-threatening illness commonly overlooks the informal carers, yet their health and well-being is inexorably linked to the person they care for. Many palliative care services use volunteers to help patients and their families but creating supportive environments at the workplace or recreational sites of carers and/or patients requires cooperation, interest, and action at those sites. These are relevant targets of community development by palliative and public health agencies.

Community Action

The need to strengthen community action and develop personal skills goes beyond the provision of health and death education to the community through talks by the local palliative care staff. Many palliative care services insist that they have long links and working relationships with the broader community. However, when the details are examined most of these relationships consist of (1) drawing their volunteers from the community, (2) fund-raising in their community, and (3) the provision of talks to their local community, many of which consist of raising awareness about the local service. Few of these relationships qualify as community development except that raising awareness of the local palliative care service might be useful to a community. None of these relationships are partnered/participatory ones.

The basic rationale for community development is that social environments are altered in positive ways that enhance the present and future support responses for health, death, dying, loss, and care in that community. Furthermore, crucial to the alteration of that environment are changes to it that are led and driven by the very members of that community. Finally, any changes that do clearly take place in a community and that are led and driven by that community must be sustainable. In other words, these alterations to a community must stay in place and continue to influence even if the local palliative or public health service disappears from the face of our planet.

Although community development strategies are quite old, social program approaches in the health and welfare sectors since the Second World War, the World Health Organization has taken this program development to new levels since the 1980s with their development of Health Cities (Tsouros, 1990, 1995). Healthy Cities are largescale, community-wide health promotion programs that are coordinated or supported by local governments. There are currently hundreds of cities now participating in WHO Healthy Cities programs. There is a great deal of variation to these programs, but essentially they have two unifying aims: (1) To create healthy physical, social, cultural, and service environments to enhance health and (2) to encourage ordinary citizens to take some leadership for their own health care.

However, one of the key problems with Healthy Cities initiatives is the low priority, even absence, given to matters to do with death, dying, loss, and care. Although there are exceptions to this disinterest toward death and loss, most Healthy Cities programs do ignore the health promotion challenges that might target these verities. Addressing this omission are Compassionate Cities programs (see Kellehear, 2005).

Compassionate Cities are identical to Healthy Cities in their practice methodologies, that is, they go about establishing themselves in the same manner, but they do not limit their program targets to health. Instead Compassionate Cities include the problems of living with life-threatening illness and loss as well as caring in these contexts. If Healthy Cities argue that health is a positive concept and a holistic idea, and it has a concern for inequalities (Hancock, 1993) then Compassionate Cities view compassion as an ethical imperative. Health is truly a positive concept even in the presence of serious disease, disability, or loss. Compassion, like health, is a holistic idea, and furthermore, it implies a concern with the inevitability of death and the universality of loss (Kellehear, 2005: 44).

Compassion is the ability to share in another person’s suffering and is the linchpin to social, psychological, and ethical quality that is fundamental to all quality care and support. No society is safe or healthy if it cannot take compassion for granted in its own citizenry and services. Social support is not an elective quality in care and in this way compassion is an essential ingredient to all care. It finds its greatest empathy in the universal experiences of death and loss for these experiences have no cure, and this makes compassionate support the central characteristic of any community development program addressing the problem of mortality (for an extended discussion of the definition of compassion see Kellehear, 2005: 41–45).

Although the public health literature is replete with examples of action strategies that are integral to community development programs in the service of health promotion, few people can imagine similar programs for death and loss. Healthy Cities programs may coordinate antismoking programs, child safety house programs, or city-wide sporting events for its citizenry such as swimming, running, or other nonprofessional events. Other programs may involve schools that raise awareness about control of sugar and fats in the diet or the value of sun-screen lotions and hats. Advertising programs may be initiated or supported by local government or the media about the mental health value of time well spent with family and friends and the hazards of overwork. Poster campaigns, needle exchange programs, or diabetes and blood pressure screening can be encouraged by pharmacists. Other programs may involve community members raising awareness of the advantages of cervical and breast screening for women. Trade unions and business associations may partner with health services to prevent workplace bullying, racism, or sexism or develop social programs that enhance workplace morale, cooperation, and support.

The programs that might be developed by any Compassionate Cities approach do not markedly differ in these respects. Poster campaigns that provide simple messages for the support of grieving friends, family, or colleagues are no different from those that promote safe sex messages. Policies for workplaces and schools that target bullying or racism can also be developed for death and loss. With support from local health services, many schools and workplaces welcome the possibility of an informed, helpful, and organized response to death, serious illness, or bereavement in their settings.

Community forums run by the local Rotary, Lions, or Apex clubs about poverty alleviation in developing countries or their own can easily be adopted to raise awareness about living with cancer or bereavement. Annual short story competitions or art prizes can encourage shared stories or artwork in the community about death, dying, loss, and care and this can make this commonly invisible side of life more public, enhancing both understanding, empathy and support to present and future responses. Umbrella organizations for police and other emergency services, those in palliative care or aged care, those in funerals, cemetery, or coronial work, and/or those in disaster management might benefit from their organizations arranging a talkfest, conference, or social gathering designed to support each other in these different sectors in their difficult work in death and loss. Often we forget that those who work in end-of-life care also need support and this is not always best provided by a direct services response such as supervision or counseling. Informal learning environments are just as helpful to professionals as they are for everyone else.

Barriers And Challenges

There are three main barriers to the development of comprehensive health promotion and community development programs and initiatives targeted toward dying, death, loss, and care.

First, there is a general culture of death avoidance and ignorance. Although it is tempting to resort to the cliche´ description of many of our societies as death-denying, this is not actually the case. All societies have services and people who address the problem of death and bereavement directly. That is the purpose of all our end-of-life care services and a good deal of our religious rites and services. These have always been integral to our human response to death. However, death shares that space in our consciousness with several other difficult and often traumatic experiences and topics. Like sexual abuse, mental illness, or racism, death, dying, and loss are topics that people know little about. This ignorance leads, or can lead, to equally ignorant or inappropriate responses that hinder help, or compound the problem with other problems of shame, stigma, or social rejection. Just as poorly, ignorance can lead to no response at all. In matters to do with help-seeking behavior in cancer, HIV, depression, or inclinations to suicide, no response can lead to other tragic consequences. Ignorance is not only unhelpful, it can kill in its own right.

The above simple insight is an axiomatic idea held to be true and obvious in all other areas of health and safety, yet we have been slow to understand how this works in the area of death and loss. We have been slow to recognize the mortality and morbidity wrought by grief and other death. In the literature of public health in psychiatry, drug and alcohol studies, indigenous studies, or palliative care, we have always known that death and loss have serious health consequences for others affected by these verities.

Palliative care has recently taken up the challenge of public health approaches to death and loss, especially in countries such as Australia (see Palliative Care Australia, 2001; see also State Government of Victoria, 2004). However, palliative care is only one player in end-of-life care. Bereavement care remains overly committed to a direct services response, often prioritizing counseling without an equal interest in community development and normal grieving. Aged care remains underrecognized as an end-of-life care service with large parts of its professional writing and working, as though their main or even sole brief is in chronic illness and disability. Even in palliative care, funding constraints, or amalgamations with hospitals that view their mission in solely direct service terms, threaten fledgling interest in health promotion. Partnerships with public health colleagues that might surmount these challenges can be difficult to find.

Public health writing and practice demonstrate little interest in death and loss. Even the World Health Organization’s programs give scarcely any priority to end-of-life care matters other than advocating palliative care services, or drugs such as antiretrovirals, to developing countries (Kellehear, 2005: 160). Again, these are mainly direct service responses. The WHO remains silent on health promotion or community development program development in matters to do with dying, death, and loss. And while this silence or disinterest remains entrenched in the public health community, end-of-life care services struggle with their attempts at these kinds of program development; communities struggle with their own attempts to care without adequate information, education, and support for dying, death, and loss. And health promotion remains confined to the well and the ill but not for dying people, those who are bereaved, or those caring for both.

The Future

While our popular understanding of the psychology of dying and services for the dying confine themselves to the field of palliative care, we may permit ourselves to view the public health challenges of death and loss as a specialist problem. However, awareness of dying is in fact a much larger social problem. As modern public health and medical programs succeed in compressing our morbidity into fewer years at the end of life, we overlook the fact that dying and then death will follow this trajectory.

During the time of our physical dying, more and more people during this experience will be aware that this is their final time and many of these will have psychological, social, and spiritual needs that will require addressing. Many more who will be carers for these people, and who will survive them, will consequently have important support and information needs. Although people living with dementia have serious cognitive problems that cover many aspects of their former lives and memories, the fact that they might be dying may not be one of these (see Haydar et al., 2004). A health promotion strategy that addresses death, dying, loss, and care for those at the end of life will be an important task for our public health futures in industrial societies because the pressures of our future demography, epidemiology, and social psychology of aging and dying will demand it.

Furthermore, although it is true that every day more is done to address the political, economic, and public health needs of those who live in poverty, much less is done to address the needs of those who die in these circumstances. If one confines our public health gaze to HIV/AIDS – the fourth largest killer in the world today – it must be recognized that this epidemic is only partly addressed by direct medical and nursing services. Until a cure is found, people continue to die every day, often in circumstances of isolation and shame. In addition, the families who care for those who die of AIDS are frequently subject to the same fear, stigma, and shame as visited upon those for whom they care.

Whether we include the elderly dying of organ failure in nursing homes, or infectious diseases in poverty, the social issues surrounding dying, death, loss, and care deeply impact on the quality of those experiences. Direct service provision represents a small contribution to this problem. Health promotion and community development remain our best hope in tackling the challenge of materializing and maximizing quality of life at the end of life. Death and loss remain the greatest challenge for future public health – and its final frontier.

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