Helle Timm
A national survey conducted with my colleagues reveals that the Danes more or less know (statistically) what they can expect to die from, and where their end will occur. It also tells us, that they hope the reality will be different, for themselves and for their loved ones. [1]
Death as a human condition of being alive has occupied thinkers and artists through all times. Nowadays it is also occupying intellectuals and prominent authors contributing to the late modern version of a “death awareness movement”. There seems to be a boom in books and movies telling stories about individuals dying from severe and incurable diseases. In Denmark, as elsewhere, (sometimes even young and healthy) people are invited to talk about death “over coffee or dinner”, to join courses of “last-aid” and to learn from radio TV shows about how to cope with bereaved relatives.
We can talk about death as a universal condition. But what about dying and its socially defined conditions? Within the last 50 years these have changed significantly. First, have been the impact of wider movements within society (globalization, knowledge and information, working life and family structure), as well as developments within welfare states and changes in the care for the elderly, the sick and the dying in general. Second, are the consequences that flow from changes in the trajectory of life threatening diseases and treatments, for example, prolonged life with severe disease and the prolonged symptoms of both disease and of treatment. Third, we are seeing the effects of social and professional movements concerned with the awareness of death, as well as the promotion of hospice care and palliative care. For all these reasons awareness of death and the care for the dying has progressed for some groups.
The hospice and palliative care movement has succeeded in putting care for the dying on the agenda, and in developing higher standards of care for those at the end of life (until now mainly those with a diagnosis of cancer, but beginning to concern other groups of patients and relatives as well). Yet these approaches have not succeeded in minimizing inequalities among the dying – on the contrary.
The hospice and palliative care movement has of course grown and expanded its reach. But while developing within the frame of the public health care system – palliative care seems to have taken over the inequalities of that same system. This means that there may be a general public awareness of hospices and palliative care teams as a part of the health care system, but at the same time people have personal (and maybe also publically shared) experiences with death and dying from e.g. COPD, heart diseases, co-morbidity and age, which are not properly cared for – at home, in nursing homes or in hospitals. Experiences of everyday life, stories known from others or from the press may all contribute people fear the process of dying. Can talking and telling take away that fear?
In Denmark – as probably everywhere – “a good death” is still related to social class (social capital), age, care setting and diagnosis.
Dying under uncertain and unequal conditions
Through the last 25 years, the hospice movement and the 20 hospices established in Denmark have managed to create some very positive images and realities of “a good death”. The hospice philosophy has also inspired the specialty of palliative medicine, not to mention the interdisciplinary professional field of palliative care [2]. Around 70% of all deaths in Denmark follow from a severe disease course. Our survey found that 27% of the population would like to die in a hospice, but only 2% do so (and 96% of those have a diagnosis of cancer).
Dying has in many ways been professionalized and medicalized [3]. Death and dying has come to be managed by experts within a hierarchy of professions and positions, despite the fact that the greatest amount of care still takes place within civil society and everyday life at home. Top of the hierarchy is specialized interdisciplinary (hospital based) palliative care for cancer patients and their relatives. Lowest in the hierarchy are old people living at home with dementia and other life limiting diseases. And at the boundary of the hierarchy are people with diseases other than cancer (lung, heart and neurological diseases, mental illnesses, or people living in prisons, asylum centers, or those who are homeless).
Within the last quarter century Danish hospitals, nursing homes and municipal home care have undergone big changes in relation to practical support and care. Resources for practical help are diminishing and are managed through neo-liberal assumptions about efficiency and effectiveness (New Public Management), which leaves very little or no room for the core of caring through relationships, dialogue, ‘being without doing’, compassion and empathy.
Against this background, ‘specialist’ palliative care in Denmark has concentrated in hospital and hospice settings, the latter private run but publically funded. Meanwhile, the idea is that ‘generalist’ palliative care will suffuse the general health care system – and be inspired by the specialist services. But while nursing staff in the hospices are highly trained, this is not always the case elsewhere, particularly in nursing homes and home care. Likewise, while the staffing in a Danish hospice is one nurse to a handful of patients, the night staffing in a Danish nursing home involves one nurse assistant being responsible for (and alone with) between 24 – 48 residents of whom around 80% may suffer from dementia.
Five percent of Danes in our survey want to die in a hospital (and around 50% actually do) and 1% in a nursing home (and around 25% actually do).
Death as a universal human condition
Dying is always socially constructed and experienced.
The German sociologist, Norbert Elias, suggested three main ways for a society and its members to deal with the condition of being mortal; 1) believing in myths, including religious and spiritual frames of understanding 2) denying death 3) facing death [4].
The movements and orientations that have given prominence to care of the dying (hospice and palliative care) and the fact that we are all going to die (death awareness) – are of course related. But neither seems to focus much on inequalities in dying. Perhaps this reflects the strong voices of their protagonists – well-educated middle-class people with the power of language and position.
To many Danes in our survey a hospice probably symbolizes “a good death” whereas dying in a hospital or nursing home does not. Ninety-six percent of the population trust that the health care system can take care of physical symptoms related to death and dying, but only 16% trust that the same system can help them with existential problems related to death and dying. Meanwhile, more than 70 % would like euthanasia to be a possibility.
Dominant voices in the death awareness movement (with a few exceptions) talk about common cultural circumstances like taboo, denial and fear, which can be changed and coped with through openness and understanding, therapy, talking and education [5,6]. In our survey 76% of Danes did not want to know or to talk more about death, dying and palliative care – until they or their loved ones were actually severely ill.
Maybe people in general are more realistic about dying than the dominant voices of the “death awareness movement” would suggest? And maybe the best way to make people comfortable about death is to be able to assure them, that they will be properly cared for when the time comes?
References:
[1] Helle Timm and Julie Hagedorn-Møller: Danskerne om livet med sygdom og død (The Danes on life with illness and death). Copenhagen: PAVI & TrygFonden, 2013
[2] David Clark: To Comfort Always. A History of Palliative Medicine since the Nineteenth Century. Oxford University Press. 2016
[3] David Clark & Jane Seymour: Reflections on Palliative Care. USA: Open University Press, 1999
[4] Norbert Elias: The Loneliness of the Dying. Continuum: New York, 2001.
[5] Irvin D. Yalom: Looking at the Sun: Overcoming the Dread of Death. London: Piatkus, 2008
[6] Atul Gawande: Being Mortal. Illness, Medicine, and What Matters in the End. London: Profile Books Ltd, 2014
Helle Timm has been involved in applied research within social and health care science and policy for more than 30 years and for the last 20 years has been involved in the development of research into palliative care in Denmark. She is professor and research leader at REHPA, the Danish Knowledge Centre for Rehabilitation and Palliative Care at the University of Southern Denmark.