Image: Brightest comms + film. All rights reserved 2014
David Clark, University of Glasgow
Have you ever considered how you might like to die? You may have made a will, but do you have an advance care plan stating your wishes and preferences for when your life comes to an end? You may have a ‘bucket list’ of things you want to do before you die, but where and how would you like to be cared for at the end of your life and who would you like to be with you? You might have worked out how long you are likely to live and therefore how best to eke out your pension[i]; but have you considered how you might spend your final months and weeks of life? Is dying something for which we should be preparing, or are you – like Woody Allen – just not wanting to be around when it happens?
Such questions are starting to resonate more widely in society. It is now 20 years since the sociologist Tony Walter (1994) proclaimed ‘the revival of death’, arguing that our mortality is no longer a taboo and that the manner of our dying has become a site of new freedoms, choices and cultural expressions. Walter declared death, dying and bereavement out of the closet – and increasingly onto the mainstream of public discussion. He seems to have been right. Today it is hard to ignore the growing interest in dying and death – and specifically the contested issue of how we should die.
Demographics
Over one million deaths occur in the world every week and the number is set to increase steadily to mid-century and possibly beyond, as the global population ages and grows. Recent estimates suggest that 91 million people will die worldwide in 2050, compared to 56 million in 2009. It is also estimated that for each death another five persons will be affected by care-giving and grieving, so by the second half of the century some half a billion each year will experience the death of a person close to them.
How will death and dying on this scale be supported – socially, culturally, professionally, environmentally?
Debates
Care at the end of life has become a matter of urgent global importance and at the same time one of significant contestation – leading to fractured debates on how best to promote appropriate care when death is near. Ending life with ‘dignity’, autonomy, freedom from pain and with appropriate social and medical support make up elements in a fragile consensus on what we might call the ‘good death’. But in the West particularly, there is much argument about the manner in which this can or should be achieved. More fundamentally, who is defining the good death, for what reasons and in what circumstances?
Three positions can be identified.
Therapeutic and care based responses
Modern interest in organised arrangements for care at the end of life took off in the 1960s when a hospice and palliative care movement started to gather momentum in Britain and the USA. The first hospices tended to be outside the mainstream of the healthcare system and were often founded and run by people with commitments to social change and community action. The hospices came to signify something quite specific – reaching out to those in the terminal phase of illness, often in a manner influenced by religious or wider social commitments and with a goal to engage with the fundamentals of human mortality – making the departure from life dignified, meaningful and free from suffering.
In 1987 the UK was the first country in the world to recognise the field of palliative medicine as a medical specialty. Its practitioners sought to take the principles of hospice care to larger numbers who might benefit, especially in hospitals and community settings. The field quickly expanded. But with gains came concerns. Drawing on the work of Max Weber, sociologists Nicky James and David Field (1992) drew attention to the routinizing and professionalising forces that were now at work in hospices. They suggested that palliative care might run the risk of losing its radical goals and ossifying into just another field of medical specialisation where ‘holistic’ ideals are lost in favour of a narrow medical concentration on the management of pain and other physical symptoms.
The two approaches – of ‘hospice’ and ‘palliative’ care were adopted and adapted in various ways around the world and in some countries exist in quite explicit juxtaposition. In a sense one remains a social movement whilst the other has become a healthcare specialty. If hospice is death embracing, palliative care emphasises quality of life; whereas hospice frequently draws on a social model, for palliative care the model is increasingly medical; if hospice promotes community engagement, palliative care supports professional development. And so on.
The key question about both approaches however is whether they can go to scale. At the moment specialist hospice and palliative care is still mainly confined to people with cancer. Coverage is poor; access is patchy and frequently comes rather late in the trajectory of illness.
Instead of specialist hospice and palliative care services might it not be better to raise the overall standards of care at the end of life, regardless of context, diagnosis or locality – and in so doing widen choice?
Ethico-legal and rights based claims
Such questions stray into the territory of rights and equity. In western cultures, there has been a strong emphasis on the notion of autonomy at the end of life – meaning that we should be free to determine as much as possible the manner, timing, place and character of our death. The baby boomers are often cited as a key driver of this tendency. This means not just access to hospice and palliative care and the ‘option’ to die at home, but other alternatives too, like assisted dying – an approach often resisted by hospice and palliative care practitioners. We see many jurisdictions where assisted dying is now under careful consideration. In a growing number it has already been legalised, for example: euthanasia (Netherlands, Belgium), assisted suicide (Switzerland), assisted dying (five American states). Two UK parliaments will consider proposals for the legalisation for assisted dying later this year.
Religious beliefs still play a strong part in attitudes to assisted dying. For some the sanctity of life is not compatible with its deliberate ending. In general, health professionals (particularly doctors) are less convinced than the general public about arguments for interventions to hasten death. There are fears about malpractice, coercion and inappropriate use of the legislation. These are countered by statements that such practices already occur in the absence of legislation, that the evidence from the state of Oregon 15 years after assisted dying legislation was introduced shows numbers remain small and that no examples of abuse have been observed.
Cultural shifts and turns
Added to this is a third focus – one of which is not particularly about professional care, rights or services. Here the emphasis is on dying as a social phenomenon that merits wider discussion, exploration and interpretation. This finds its expression in films, public art, exhibitions and various attempts to invent new rituals to celebrate our mortality.
The death café experiment seems to be spreading through the country – gather over coffee to discuss with others what death means to you and how we can make the most of the lives that we have. Or attend a death salon, bringing together intellectuals and independent thinkers to engage in the exploration of mortality by sharing knowledge and art. Soul midwives are another new approach – offering a skilled volunteer to accompany you to death, helping you to leave the world, much as the midwife helped you to enter it. Green burial has likewise gained traction as a concept – plant a tree not a headstone and help to ameliorate the massive environmental harms that will result from global disposal of the dead on an unprecedented scale.
The good enough death
The anthropologist Beverley McNamara (2003) has used this term to describe what we might reasonably hope for when we die – where egregious failures in care are absent and where things are as good as might be expected, albeit without reaching the five star service of the hospice death. More recently the idea of taking the principles of a hospice death into the hospital was attempted through the widespread adoption of the Liverpool Care Pathway for the dying patient – an initiative that met with public controversy and eventual failure.
Few people may have an ideal scenario for the manner of their dying. Laurie Taylor once envisaged this as involving a large joint of marijuana and the music of Miles Davis. Billy Connolly is now touching on the subject in a new TV series. Will it be the case that in their dying as in their living, the baby boomers get it all? Despite its universality, death is rarely a ‘great leveller’. Our dying will be framed by our living. This has now been recognised by health planners in England, who have just announced a Care Quality Commission investigation into inequalities in end of life care. It is recognised that issues of wealth and poverty, gender, ethnicity, place and social class can all shape end of life experiences. Informed by such dimensions, the debate about how we should die is set to take a new turn.
References
James, N. and Field, D. (1992). The routinisation of hospice: charisma and bureaucratisation, Social Science and Medicine 34(12): 1363-1375.
McNamara B. (2003) Good enough death: autonomy and choice in Australian palliative care. Social Science and Medicine, 58, 929–938.
More Care Less Pathway: A Review of the Liverpool Care Pathway. Crown Copyright, July 2013.
Walter, T (1994) The Revival of Death. London: Routledge.
[i] UK Pensions minister has announced plans to give retirees rough estimates of their life expectancy from April 2015. Specialist pensions experts will calculate how long older people have to live, based on their gender, lifestyle and location. The move is a reaction to concerns people will be irresponsible with their pensions, now that there are fewer restrictions around withdrawing their pot in one go.
David Clark is Head of the School of Interdisciplinary Studies at the University of Glasgow and a Wellcome Trust Senior Investigator. Follow his blog.