Human beings have always struggled to conceive their own non-existence. As mind-bending as the comprehension of time and space, death is an epistemological trauma to our personal universe. Sigmund Freud wrote, ‘it is impossible to imagine our own death, whenever we attempt to do so we can perceive that we are in fact still present as spectators'.
While death-as-concept offers a challenge to the human ego, the very real practicalities of death and dying reveal much about the power of the individual in society as a whole, exposing the true nature of personal autonomy at the moment of the individual’s greatest vulnerability.
What might be described as the politics of death, has a profound impact on the way we die, including the pain and discomfort we suffer, but also presents hard choices for societies regarding the allocation of resources, ethics of choice, and the extent to which individual needs can be met.
It’s notable that the emergence of democracy in Greece in the fifth century BC, was accompanied by a simplification of burials with Athens – the cradle of democracy – favouring cremation. It was in the same ‘Golden Age’ of Athens, the time of Pericles, Aeschylus and Euripides,that Hippocrates defined the patient-centred ethics of Western medicine.
For the subsequent two millennia, the mode of death for those lucky enough to die ‘of old age’, remained broadly the same as the ancient Athenian – at home, surrounded by friends and family. However, the rise of industrial capitalism in the late 19thCentury in the West, and the consolidation of the hospital as an institution led to a change in the treatment of the critically ill.
By the late 1960s, some medical practitioners were increasingly disturbed by what they saw as the cold, medicalised, de-personalised treatment of the dying. This led to a quiet revolution in treatment from which the modern hospice movement, and today’s palliative care emerged.
In 1967, an Anglican nurse named Cicely Saunders set up the world’s first purpose built hospice for the critically ill, in Sydenham on the outskirts of London. Critical of hospitals, which she believed neglected care for the individual, Saunders’ approach instead emphasized the patient-centred approach of treating ‘total pain’: physical, social, emotional, and spiritual – including the patient’s family.
Around the same time, in the United States, Elizabeth Kubler-Ross – a psychiatrist and researchershocked by the treatment of the dying in American hospitals, began pioneering work with the critically ill at the University of Chicago's Pritzker School of Medicine.
Kubler-Ross conducted interviews with dying patients in which a seminar group of medical students, hidden behind a one-way mirror (with the patient’s full knowledge) would observe. In her best-selling book //On Death and Dying//, Kubler-Ross describes how patients were generally eager to participate, to be treated as an individual rather than a patient, and to achieve some form of relief through sharing their experience.
In contrast, the greatest opposition to her work was from medical professionals, motivated largely by a misplaced concern for the welfare of their patients. More disturbingly, Kubler-Ross also highlights discomfort amongst medics in accepting a patient is dying and informing them, thereby ensuring enough time for patient and family to prepare.
While this can be partly justified by the imperative to ‘maintain hope’ in the ill and maintain the possibility of recovery (however slim), Kubler-Ross also gives worrying examples of medics unable to understand the needs of their dying patients, and to treat them with care and respect.
Kubler-Ross outlined five types or stages of coping mechanisms she encountered in patients - Denial, Anger, Bargaining, Depression, Acceptance -, as a tool to recognize how people deal with the process of dying, and to enable medics to recognize how to bring a patient to the reality of their diagnosis in the most sensitive way.
The challenge that Kubler-Ross identified for medical staff to provide individual, culturally tailored end of life care not only remains today but has been made more elaborate by increased migration and multiculturalism. A range of studies have highlighted the similarities and differences in different cultural approaches to dying. Unsurprisingly, difficulty in discussing death is a constant taboo, with many communities actively preventing the patient hearing their diagnosis.
For Professor Jane Seymour, lead author of a recent study by the University of Nottingham on ‘Public Attitudes to Death, Dying and Bereavement’, Elizabeth Kubler-Ross’s work should both be celebrated, and critically appraised.
“A lot of her (EKR’s) work was about facing death – how do you live in the face of mortality, which most of us don’t want to think about on a daily basis. You couldn’t live could you? It was a landmark piece of work, terrifically important. But what you’ve got to remember is it’s very culturally specific. When you’re talking about the ways in which people experience terminal illness, bereavement or just thinking about death or dying, attitudes vary hugely.”
Kubler-Ross strongly believed that the individual should be allowed to die in the comfort of home, with a full and frank understanding of the realities of death, and an opportunity to address the practicalities of that death and its repercussions. These fundamental needs, she believed, were denied by a mechanical, hospital system.
For Professor Seymour, while the idea of the ‘good death’ is relatively consistent across cultures, beliefs, and socio economic groups, there is a risk of seeking to empower the patient and actually misunderstanding their wishes.
“Across cultures there tends to be agreement on some key factors that make up the good death, being free of pain and a huge amount of suffering would be the top one, being surrounded by your family is another. Dying at home is important. But we did some interesting research with Chinese older people and that wasn’t the case because in traditional Chinese culture there is a concern the home might be contaminated by death.
Generally speaking, people want to die at home but they don’t want it at any cost, if they’re not going to have appropriate nursing care, or burden their relatives. Also I think we take the notion of home far too literally - as a place - but it can mean a sense of familiarity or having people around you who know you.”
Religious ethics are a key driver of approaches to death. A study of Dutch Cancer patients found that patients with a non-personal image of God (i.e. God is unknowable) were more likely to be subject to denial, and to seek advice from others for moral support. Those with a personal image of God were more likely to rely on religion as a coping mechanism.
In many cases religious directive is unclear. Jewish ethics, and Sharia law both prohibit suicide, assisted suicide and euthanasia. But Jewish ethics allow treatments to provide comfort even if they may shorten life, and Sharia law allows ‘Do Not Resuscitate’ orders without consulting the family.
In addition to religious ethics, different cultures have different approaches to pain and suffering. Hinduism, Buddhist and Confucian beliefs all posit pain as something to be endured, and which may lead to spiritual growth. This, and poor cross-cultural communication about pain may partly explain significant disparities in pain management repeatedly identified in the provision of end-of-life care to ethnic minorities, with pain significantly underestimated.
The treatment of dying patients remains controversial, even in the UK – the home of the hospice movement, and rated as the best place in the world to die by the Economist in 2015. A recent media storm around the Liverpool Care Pathway – a process to allow multi-disciplinary teams to provide palliative care – at its most extreme effectively accused hospitals of conducting euthanasia to secure cash incentives.
A 2015 report by Marie Curie identified an enormous disparity between the admission of cancer patients and patients with other critical illnesses to palliative care. 88% of people in England and Wales using palliative care have cancer but cancer accounts for 29% of deaths, suggesting end of life care for other terminal conditions is being neglected. The report suggests medical professionals are still unwilling to discuss end-of-life care with patients, and see admission to palliative care as ‘giving up’. As a result, those admitted are in the very final stages of life, living on average only a further 21 days.
This has many implications – preventing the dying from going home if they wish, persisting with what may be painful and expensive treatment, and utilizing sparse hospital resources. The Marie Curie report, while recognizing all cases are difficult, stresses that to ensure palliative care is introduced at the right stage, it needs to be ‘everyone’s business’ - not taboo.
Thiswill be difficult while the public are in denial about death and dying.The British Social Attitudes Survey 2013 identified that 70% of UK citizens reported they were comfortable talking about death, with only 13% uncomfortable. These figures stand in stark contrast to the 43% across all ages who reported they had no plans at all.
The survey suggests people are comfortable with talking about death in the abstract, but not making practical plans as ‘death feels a long way off’. It is arguable to what extent this is simply camouflage for the same age-old discomfort which – like jocular references to ‘kicking the bucket’ - reveals more of our fears than our comfort.
So many of the problems related to death appear to be fundamentally about communication – between patient and family, between patient and doctor, and between doctor and doctor - that there are obvious opportunities for innovation.
A recent report by NESTA identified informal care as a market ‘ripe for disruption’, with the number of people over 65 projected to grow by 35% over the next ten years, and governments struggling to cope.
New technology could utilize the existing ‘cultural assessment’ tools for gauging patient needs and beliefs to ensure miscommunication is minimised. Communication systems, networking tools and data analysis might ensure the management of information between the multiple professions involved in end-of-life care is streamlined, ensuring decisions on palliative care, and end of life conversations happen at the right moment.
Prof. Seymour’s study concludes by promoting a model of peer education on end-of life issues delivered by older members of the public, to ensure the sensitive, personalized treatment of the dying. The application of networking tools might allow such an approach to be delivered on a far larger scale – but care - human interaction which recognises the humanity of the the individual, not only the autonomy of the patient - must remain first and foremost.
Tragically, this was not the case for Kubler Ross herself. In 2004 she died unhappy with her care, and bitter that the legacy of her life’s work had not resulted in a significant improvement. In an interview toward the end of her life she stated: "After teaching doctors and nurses for decades, I was in the hospital after my stroke, and it was like my work was nonexistent.
The nurses never came to see their patients. They would just sit out there in front of their computers.
When I left the hospital, I was so depressed. It was like my work for four decades had gone down the drain. Nobody learned anything. It's a disgrace.”
When asked which of the five stages of coping she was in, she yelled "Anger. I'm pissed!"