Compassionate Cities

Allan Kellehear

• Publisher: Routledge
• Year: 2012
• eBook ISBN: 9781134209194
• Topic: Medicine
• Subtopic: Health Care Delivery

Once it was difficult to see end of life care beyond conventional medical intervention, but hospice and palliative care introduced a more holistic approach, providing quality of life for the dying and their families. This ground-breaking work takes end-of-life care beyond these palliative boundaries, describing a public health vision that involves whole communities adopting a compassionate approach to dying, death and loss. Written by a leading academic in the field of death and bereavement, this text outlines the historical, political and conceptual basis of compassionate cities, providing a community development model for end-of-life care.

Moving away from infection control and health promotion Allan Kellehear invites us to think of a third wave movement of public health, joining empathy, equality and action together as practical policies. Presenting a radical new perspective to death, ageing and public health, Compassionate Cities is essential reading for academics and professionals alike.

Chapter 1

The Social Roots of Organized Care for the Dying

Modern thinking about end-of-life care is characterized by contradiction. When we imagine the end of life our thoughts quickly turn to the final days of dying. The ageing process, loss, violence, dispossession or simply living with a life-threatening illness rarely occupies much space in this understanding. Yet, ageing does involve significant confrontations with death and loss. Violence and dispossession cause experiences of loss and the deaths of people just as surely as do cancer or heart disease.

Whatever images we hold about dying, death or loss, our community images of these experiences also display yet other paradoxes. Community care of those dying or experiencing loss commonly evoke professional care images. We imagine medical care or other health services in general. We think in terms of pain control or counselling. Even here, the professional activities occur in hospitals, hospices or other treatment centres and professional locations. Our ideas about community care become so estranged, even confused, that we often accept community based care as a substitute, a mirage or as a theatrical lookalike for the real thing.

We struggle to imagine the police officer, the municipal councillor, the local school teacher or our own children as active and formal carers of people at the end of life. Instead, our images are of specialist health services and their personnel in hospice, palliative or nursing home care. In these simple ways, the social dimension of care – the way whole communities respond to end-of-life experiences and issues – becomes overly identified with medicine and their health service allies.

The history of health care has demonstrated that when we become totally reliant on professional services for our care several retrograde experiences come along for the ride. Firstly, we tend not to recognize, less use, the valuable resources and abilities that occur naturally among ourselves in all communities. Secondly, we tend to encourage others to define our needs in terms of their abilities to meet them. Finally, we tend to fail to develop partnerships that maximize the strengths of professional services with the strengths of community agency and action. How has this happened? How adequate are current professional responses, such as they are? Is there another way?

At the outset of this chapter, it is important to remind ourselves that we have always cared for our dying. In fact, the community care of the dying actually predates the history of professional care of the dying. Much of the strength and durability of that everyday care came from the general and targeted social supports and activities of whole communities towards their dying persons.

Too often we do not name the activity that is most important to living and dying. It is not medicines and holy oils that make us want to live, or die, in peace, but the social relationships and meanings of a personal lifetime. It is important to recognize that the history of travellers in the valley of the shadow of death is also a history of our community care and support for each other. Formal care of the dying has emerged gradually through history from that broader and longer history of community care.

Some of the professional care that emerged later did so from medical traditions – from physicians, surgeons or apothecaries. Some of the formal care came from other professional areas, from the spiritual traditions of care delivered by religious organizations. In these specific ways, organized ‘professional’ care of the dying has a long history in Western countries, particularly from medicine and religion. When pilgrimages became popular in fourth century Europe, for example, monasteries, convents, inns and hospices grew in number and importance along the roads leading to the Holy Lands (Kendall 1970).

Hospices specialized in care of pilgrims who were injured, fell ill or were dying. In fact, the modern hospital developed from their practices and organization (Bradshaw 1996). The Hospice at Jerusalem in about 1165, for example, contained about 2000 beds and experienced a daily death rate of about 50 patients (Sumption 1975: 199). Our popular understanding about care of the dying tends to be coloured by our repeated exposure to these above-mentioned kinds of observations. But organized care of the dying has been more than care by specialist practitioners from medicine and religion.

The social roots of our organized care of the dying have another, earlier and equally important, if less studied, source of care. This is the care we have given each other as ordinary citizens – as non-professionals if you like – and this care is a commonly overlooked chapter in our history of care towards the dying. Because modern ideas about community self-help within public health may trace its beginnings to these origins I will begin my review of the social roots of care of the dying from this rather neglected domain.

Community Care

It has been a common observation by historians and sociologists that early physicians often confined themselves to cities and large towns where they were sought by the wealthier classes who could afford their solicitations (for European observations see Jewson 1976, for US observations see Starr 1982: 40). Medieval pilgrims, for example, died under the care of roadside hospices only because they were on pilgrimages that took them a long way from their doctors and further than their physical abilities or food rations would allow. But despite massive numbers of people who underwent these pilgrimages, particularly in so-called jubilee years declared by a pope (for example AD 1350) most people in the Middle Ages did not make pilgrimages. In fact, before the middle of the eleventh century these movements were composed of largely aristocratic individuals or small groups (Thompson 1928: 386), including many who were not typical peasant folk but ‘beggars, thieves and prostitutes’ (Herlihy 1997: 66).

More importantly, most people did not live in cities or large towns either. Rather, the majority of people in the Middle Ages lived in a settlement rather than migratory situation, and they lived that way mostly in rural settings, i.e. in small villages, hamlets or on family farms. Furthermore, when the majority of pilgrims returned from their journeys they returned to live and die in settlement circumstances. When common images of health care are adjusted for social class and regional specificity, the most common form of health care ‘provider’ in rural areas was probably a ‘non-professional’ (Gottfried 1983: 109). This was a person without formal training whose desire to help the sick gave them much experience and a few ideas swapped with other like-minded practitioners. In Europe some 15–20% of these non-professionals were women healers, and their fees were always the lowest and most affordable for the poor rural populations that they served.

Even in the USA, as late as the seventeenth and eighteenth centuries, all types of people took to providing health care to each other. Many of these people practiced health care while selling or conducting other businesses. Both men and women seemed to engage in these activities, particularly in poor, rural areas. As Starr (1982: 49) observed, ‘In colonial America . . . most medical care was routinely provided by women in the home’. In the same work, Starr also noted that native Indian doctors were also popular. The interest in Native American Indian medicine was widespread and much respected by the early colonists of the USA.

There were also other periodic influences that led to a continuing marginal role for professional care of the dying. In European plague times, during the fourteenth and fifteenth centuries, a time when some 20–50% of the population were dying (Ziegler 1969, Platt 1996), few dying people were cared for by doctors or clerics, largely because so many of these professional carers were dead or dying themselves. Furthermore, many of the remaining clerics and physicians who were untouched by the plague were so terrified of the ‘pestilence’ that they refused to offer last rites or medical care to any of those affected by it. People were left to fend for themselves in any way they could, and in the company of anyone who was willing and brave enough to help them (Gottfried 1983: 78). Giovanni Boccaccio’s account of the plague describes this problem in his much-quoted work The Decameron:

Because of such happenings and many others of a like sort, various fears and superstitions arose among the survivors, almost all which tended toward one end – to flee from the sick and whatever had belonged to them. In this way each man thought to be safeguarding his own health . . . Meanwhile, in the midst of the affliction and misery that had befallen the city, even the reverend authority of divine and human law had almost crumbled and fallen into decay, for its ministers and executors, like other men, had either died or sickened, or had been left so entirely without assistants that they were unable to attend to their duties. As a result, everyone had to do as he saw fit.

(Quoted from Gottfried 1983: 78)

Finally, we do well to remember that even in experiences of death that do not directly involve highly infectious diseases both clerics and doctors were merely one or two players included in a much larger cast of carers and participants. Aries (1974) and McManners (1985) both made the observation that dying was very much a public ceremony. Parents, friends, neighbours, servants and children, all of these parties were additional to the presence and involvement of men from medicine and the church. The dying were helped by these large groups, sometimes crowds from the local community, to meet their social obligations of making peace with family and community as well as God. The dying had a reciprocal set of obligations that locked him or her into a public morality play performed in several acts.

The cleric and the doctor often performed quite specific tasks for the dying person, but two sociological points are worth noting which help differentiate their former role with similar ones performed today. First, the conscious dying person was always the person in control. The dying person alone was chief organizer and arbiter of his or her final care and wishes. Professional services from church or medicine did not take charge in these kinds of settings. Although all the major elements of dying rituals were religious in origin and design, the home was not a formal institutional part of church. Secondly, although doctors and clerics played important roles these roles were played out alongside other equally important roles executed by others during the period of dying. Friends, servants, members of the wider community and family acted as prompts and supporters for death rituals. Often they played important roles as witnesses to confession, faith, social testimonials and personal legacies (McManners 1985: 234–69).

The higher the social standing of the dying person the greater the crowds, and the social diversity of those crowds, in helping the dying person perform these tasks. Servants required testimonials, lawyers required statements of legacy, Christians required affirmations of faith and confession. But in these ways and accounts, many of our best histories of death are also histories of bourgeois death. Because middle-class people were able to write, or were more often surrounded by those with writing ability, we know much about the community care and participation issues surrounding these social types of dying people.

Notwithstanding the debates about the empirical trustworthiness of various histories of death (Whaley 1981), the consistently middle-class and aristocratic images of dying in the Middle Ages suggests an additional dimension to the often exaggerated importance accorded to clerics and doctors. Professional players may have been minor, even absent, in many deaths among poor, rural residents. The middle-class emphasis in histories of dying is well illustrated by McManners (1985: 523) when he unobtrusively refers us to a mere footnote in the back of his epic Death and The Enlightenment to follow up details about what death was like for peasants – ironically the majority of the population.

But can this ‘folk’ or community care of the dying be regarded as an organized care? They most certainly can be regarded this way, especially if families are said to be economic and social organizations. As families are organized units of work and procreation they have always been the traditional guardians and midwives of birth and death among themselves. Furthermore, until quite recently health care has been seen as an additional family function rather than something regularly performed by and through public institutions and organizations. This is one key cultural and historical reason for the prominence of women in the caring professions today.

Finally, major life events, such as births, deaths and marriages, create organized responses for their social control and regulation. Cultures channel these functions through the rituals and customs exercised with public officials but in circumstances of community and household. Families perform these rituals and customs with or without public officials presiding over them. Such community response is always organized around traditional prescriptions. What forms does this style of care take today? What has happened to this community end-of-life care?

There are two major observations to make about the contemporary fate of community care. Firstly, the rise of the caring professions in the last 150 years or so (e.g. medicine, nursing, social work, or psychology) has meant the mass abdication and referral of community care concerns to these occupations. It is assumed that professionals mediate and express the care response for and by communities. This has led to a privatized and domestic understanding of community care. Community care becomes informal, privately motivated, a ‘native’ response to others in need. This might be a support role for the ‘more appropriate’ professional response to social and physical troubles of individuals and communities.

The widespread informal desire to be involved in care for others is channelled into formal organizations of care under the guidance or direct control of professionals. Volunteers, support groups and service clubs activities are all examples of how the informal desire to help translates into fund raising or other support duties bound for services or the direct management of professionals in them.

Secondly, contemporary end-of-life care has also become fragmented. Grief services and disaster planning operate largely independent of hospice services. Mainstream medical responses are frequently separated from the criminal justice system response to death and loss. Finally, the responsibility for all aspects of the dying experience has been, for example, delegated to hospice and palliative care services. Palliative care is defined as the social, spiritual, physical and psychological care of the dying person and their family. But how successful has the social dimension of this care been, and what form does it take today?

Hospice and Palliative Care

Whether for peasants or the wealthy, hospices during the Middle Ages continued to be places for pilgrims, travellers and the itinerant poor as an institutional form of care for the dying by religious organizations. In these places, clerics reigned supreme and they alone provided care for the dying in these settings. Their services continued more or less throughout the Middle Ages, paralleling the fluctuations of the fad for pilgrimage itself. And some of them even survived into the twentieth century performing similar functions for this particular group of people.

In Britain, for example, Anglican and Catholic religious organizations ran several hospices. However it must be emphasized that up to 1960 the British National Health Service had shown no commitment to terminal care provision in these or any other type of institutional setting (Clark 1999).

In 1967, Cicely Saunders established St Christopher’s Hospice. Saunders was a nurse, medical practitioner and practicing Anglican, and is considered to be the founder of the modern hospice movement. Her interest in care of the dying was directed at people dying of cancer, an early informal emphasis that had wider implications for later policies. Gradually, the British government began to take over funding of hospice and palliative care services in Britain.

Overall then, it should be remembered that the modern palliative care movement grew from the thin traces of the only specialist tradition of care of the dying that made it into the twentieth century – the religiously inspired and managed hospices. Palliative care accepted death; viewing its professional challenge in terms of care within death’s shadow.

On the other hand, post-plague medicine increasingly put its professional care energies into a somewhat opposite challenge – the fight against death itself (Illich 1976). In this way, modern medicine concentrated its professional efforts on models of care and types of interventions that might cure or prevent death. After all clinical efforts toward care failed, a doctor according to their personal abilities, would offer what psychological and social comfort they could. This professional space, or period of time, became the subsequent fertile ground for the resurgence of the modern hospice and palliative care movement.

Only in religious philosophies, rather than medical ones, was the problem of death part of the wider problem of a person’s spiritual and physical journey through life. In the tradition of pilgrimage ideas, care of the soul was synonymous with whole person care, care of all aspects of a person’s inner, social and physical life. Organized care of the dying as expressed in early hospice philosophy came to reflect these core pastoral values of care. These philosophies were ideological birthmarks pointing to their Medieval Christian origins.

Medieval beginnings of European hospice and palliative care began their modern consolidation in Britain in the 1960s, spread to North America in the 1970s and were supported by governments in Australia in the early 1980s (Rumbold 1998). Most of these hospice services were independent social experiments funded by private donations and staffed by idealist professionals and volunteers (Abel 1986). But such isolationism did not last long. Governments soon took over the planning and funding of palliative care services.

The desire by governments and health workers for end-of-life care that was patient-centred in terms of good symptom control, privacy and autonomy was expressed in numerous government reports, anecdotal and research-based articles in professional journals in the preceding decade of these developments (Clark 1999: 229–31). In the USA, the very survival of hospices depended on more reliable income sources to cater for professional employment and accommodation needs. Governments took a growing interest in hospice services just at a time when those services themselves questioned their own viability.

The gradual ‘mainstreaming’ of hospice and palliative care since the 1970s has generated a number of social observations of this form of care for the dying, many that appear to be critical of recent developments. It appears that the original holistic philosophy of hospice care of the dying is experiencing serious challenges and threats. Bradshaw (1996: 415) laments what she calls the ‘secularization of the spiritual dimension’, a process where the spiritual traditions derived from the Christian ethos are gradually diluted by a vague psy...

Table of contents

• Cover
• Half Title
• Title Page
• Copyright
• Dedication
• Acknowledgements
• Contents
• Preface
• 1. The social roots of organized care for the dying
• 2. Current approaches to end-of-life care
• 3. Theoretical foundations of Compassionate Cities
• 4. Policies of Compassionate Cities
• 5. The social character of Compassionate Cities
• 6. Threats to Compassionate Cities
• 7. Implementation: making it happen
• 8. Action strategies
• 9. The future: a third-wave public health?
• References
• Index