The changing face of death and dying (and grief!)

1. The changing face of death and dying (and grief!) Dr Paul Ong The Shakespeare Hospice & Warwick Medical School

2. I am… • …not an expert on grief and bereavement • …but what I can talk to you about is the way in which death and dying has changed over the course of the past century and the implications that this may or may not have for our grieving processes • My thanks to Prof Elaine MacFarland, Professor of History, Glasgow Caledonian University for her work on the changing nature of Scottish dying in the 20th century

3. To Understand Grief • We must understand death and dying • Grief is tied up with that most profound rite of passage – Death • Rites of passages are markers of our everyday lives • Culturally prescribed • Lend meaning to the cycle of life • Affirm solidarity and meaning especially at times of crisis and profound change

4. In the 21st Century • Death, and by default grieving, is managed within a framework that may have arisen through increased medicalisation. • We see this in the language that is used, e.g., “interventions to facilitate grief and bereavement” • Through time grief and bereavement and dying were ordinary events of life that needed no conferences and seminars • So why do we need them now?

5. How we handle death (1) • Is bound up with lots of social and community discourses • It tells us about our community • It tells us about our families • Death leaves us with no where to hide • Reveals inevitable Truth • Exposes and strips away the routines of our everyday life

6. How we handle death (2) • Death is an irreducible and unavoidable entity, and is universal • Undermines our sense of safety • Our sense of personal identity • Exposes the fragility and impermanence of our social structures • Shakes the foundations of our beliefs or our own constructions of the meaning of life • IS the ultimate mystery – there is a human experience of dying but not of Death!

7. Mourning and Grief • From one perspective is a lament, a statement about the relationship between the individual, the collective, his/her society, and intersects both public and private spheres. • It is a song about the way in which we are of the world, bound up in the world and yet must leave it all behind. • It is the poetry of loss and suffering • It is poetry and lament about what has become of a loved one

8. Death in different cultures in different times • Ancient Finnish • For a year after his or her death, the person was a vainaja (deceased), without individuality or a given name, which the people of ancient times avoided using.  A year was, in Finnish society, the most important milestone; the period of mourning, during which a widow was not allowed to marry or amusements to be enjoyed in the house of mourning. • Encounters with the dead in dreams were expected during the time of mourning, and subsequently feared.  The rituals of death aimed at the success of social transference, so that 'the dead would not walk at home'.  A flock of waxwings in the rowan tree at home was evidence of a successful crossing of the border.  (According to tradition, it was best to return in the form of a bird.)

9. The Batak of the Philippines • Tribes actually relocate the entire village if one person dies. The Batak would burn the house where the dead person had lived, and no one would live in that house again.

10. Polynesian • In traditional Polynesian society when a person dies, all people with the same name as the deceased within the tribe have to be renamed!

11. Visible and Invisible Death • Much of our contemporary western focus has been on an idea that death is “hidden” - taboo • Yet in many ways, it is much more highly visible, through state agencies and the public realm in terms of reporting or presentation • E.g., we know that people have died in a plane crash continents away or on the M6, and we are obsessed by mortality statistics, from surgical mortality to insurance actuarial tables to ONS reports of average life expectancies and total death statistics in the UK

12. We are cheered • …by indicators of declining mortality and extended life spans. • For example, 19th century Scotland total mortality was about 80-90,000 a year, declining to 70,000 in 1920. Greater decline followed in the 1950s to current levels about 55,000 (McFarland 2007)

13. However, • …WE STILL ALL DIE! • Death is the end result of life and mortality! • SO, • Bureaucracy and the Government can measure and predict death but it CANNOT TAME DEATH! • Scientific language of mortality tells us lots about death but little about the public and personal meanings of death.

14. Take home message • Grief and bereavement is a normal part of life – it is that special expression, from the depths of our being, about the personal and publicly shared meaning of an inescapable loss and suffering. • It is a special and personal expression of the mystery of death which both fascinates and horrifies us.

15. Most grieving and death rituals • …in most cultures take a lot or time, give great attention to the dead one (even if it is by ignoring the dead person!) and are quite elaborate.

16. A Hypothesis: The journey towards 21st century dying • …may begin with the First World War. • The huge quantities of dead from the horrors of Gallipoli, the Somme and other battlefields meant that society could not effect the normal elaborate death rituals – there was neither space nor time • Death rituals in nearly all societies tend to assume that deaths, though normal, are not an occurrence of great frequency and monotony to a community. From 1914-1919, the Great War and the Flu pandemic killed about 10% of UK males aged between 16 and 50.

17. The sheer quantity of dying 1914-1919 • According to Jalland (2006) - “introduced a new watershed in the emotional history of death and grieving, ushering in a new model of stoicism and ‘suppressed private grief’, which supplanted established forms of Christian consolation” Paraphrasing by E. McFarland

18. Of grief in that era • Wife of Private William Irvine of Kilmarnock wrote: • Had I but seen him at the last, And watched his dying breath, Or heard the last sigh of his heart, My heart, I think, would not have held, Such bitterness and grief. But God had ordered other wise, And now he rests in peace. (1915)

19. Challenging the Christian Ideal of the “good death” • The changing and bloody nature of modern warfare might have undermined our understanding of the “good death”, and of honour in death and combat, replaced by a faceless and mindless act of mass destruction, devoid of any chivalry or human decency.

20. Faceless dying • Became something more “common” and “acceptable” which may have led the way for dying in larger, more impersonal institutions.

21. At the turn of the last century • 85% of people died at home, with workhouses accounting for the rest! • Post-WW II Britain has seen the assumption of state wide powers to reform health care, housing and town planning.

22. The NHS • By 1956, just 8 years after the establishment of the NHS, 40% of all deaths occurred in hospitals. Today, in 2008, 58% of deaths, the majority, happen in hospitals.

23. Modern Town Planning and Housing • Council housing and new towns or rebuilding of old towns after WWII, dispersed old established communities. • Changes in the social structures and domestic ways of life (being a servant in service, having servants etc.) meant that dwelling became smaller and more compact • Result: Families became less able to accommodate a body prior to burial and also lost traditional social networks of support (McFarland 2007).

24. Societal Changes Post-WWII • As already mentioned, the smaller homes “pushed” the body out of the house to the funeral home. • Cleaning and preparation of the corpse, traditionally a role for the women in the family or local community became the ‘Last Offices’, undertaken by female health professionals. • Medicine began to take over from the Church as the ‘manager of death’, moving the management of death from a spiritual to a technical and scientific frame • Undertaking moves from small local service and becomes the big business of “funeral directing”.

25. This impact of dispersing society continues to this day • Handover of the generations

26. The Handover of the Generations • BBC (27 October 2005) reports a study by the IPPR which suggests that by 2021, 35% of all households will consist of one person only. • Hospice and end-of life care IS a rapidly changing field. Approx. every 7 – 10 years, a new generation of dying come through the doors. E.g., current generation are the tail-end of D-day, Blitz generation. In 5 years or so, we will see the beginnings of the baby boomer generation.

27. Hospice care for and the Grief of Bridget Jones and Inspector Morse • Institute for Public Policy Research (IPPR) says that the projection of 35% solo households by 2021 will be the most significant change to take place in British society for decades. • It will impact every person, the environment, the economy.

28. Grief and Hospice care for Bridget Jones and Inspector Morse • Fluid relationship structures and dissolving family and community structures, the commuter culture, also mean that there may not be a “core” unit that many individuals will be able to relate to or turn to in times of great existential distress – however we construe that “core”, family or otherwise.

29. Hospice care…in the far (or near??) future?? • Therefore, currently, anywhere from 54-70% of terminally ill cancer patients say their preferred place of death (PPOD) is at home (Higginson & Sen-Gupta 2000, Dunlop et al 1989, Thomas et al 2004, Thomas 2005). The government is trying to ensure that this wish is met more often and in fact may even be seen to be “encouraging” home death, e.g., the upcoming end-of-life strategy • If more and more of us are living alone, would we want to die alone, at home? Will home PPOD actually decrease with time over the next 20 years?? • How will we grieve in our splendid isolation? • No family but more counsellors?? Really?

30. Staying with Grief and Bereavement, and the Dying, is also to ask questions of Suffering • What is Suffering? • Does looking after suffering facilitate the re-knitting tight bonds of connections between community and the sufferers, e.g., the bereaved • That is to say what do counsellors represent to society? • Are counsellors taking the place of broken families?

31. Back to square one: Thinking about the basis of human relationships - mutuality • To begin to ask questions about suffering and to understand suffering, we need to examine the nature of human relationships • Death and caring for death is distinct from most other human activities and their impact on the formation and quality of relationships • Most human relationships form because of identifiable mutuality of experiences – that is to say, I feel closer or more sympathetic to someone because I know or can identify with the experience

32. Death is an exclusive experience • Exclusivity. Understanding of someone’s experience is based on mutuality. Dying lacks this mutuality. Ettema E (2007) • That is to say, whatever we think we know of dying, we don’t – till we begin to die ourselves.

33. Insights from TS Eliot • The Family Reunion (1939) • “All that I can hope to make you understandIs only events: not what has happened.And people to whom nothing has ever happenedCannot understand the unimportance of events.”

34. Therefore, • Palliative care looks after an experience which is inaccessible to the professionals by and large as a genuine personal experience (till we eventually meet it ourselves) – book or practical knowledge of the dying process is NOT the same as knowing what dying is • In palliative care, we must remember that we only THINK we know what dying and suffering is. • This is in fact not the same as the experience itself. We can only imagine it.

35. Even • …in Grief and Bereavement care, we must be careful, even with personal first-hand experience, of thinking we know what grief and bereavement is. • Worst still, to think there is a correct way to grieve or recover form grief. • Kubler-Ross amongst others have helped to define stages of dying and grieving, BUT WE MUST NEVER FORGET THAT THIS IS A VERY PERSONAL AND INDIVIDUAL EXPERIENCE OF A PROFOUND MYSTERY!

36. The dying person and society • “Human kindCannot bear very much reality.Time past and time futureWhat might have been and what has beenPoint to one end, which is always present.” • TS Eliot – Four Quartets (Burnt Norton)

37. What “End”? • Thinking of those we look after, there are two possible interpretations of the “End” • 1) The knowledge that with Life comes Death • 2) The knowledge that experience of suffering is a part of life • The two are interlinked, knowledge that our lives end and that we will lose everything that we have, in the material and temporal form, is a suffering. Therefore, logically, there is no such thing as a suffering free life.

38. TS Eliot on Reality and Suffering • “I believe the moment of birthIs when we have knowledge of deathI believe the season of birthIs the season of sacrifice” • The Family Reunion (1939)

39. The nature of suffering • Dying and caring for the dying (and actually, Good Medicine) is knowing what and when to do the “what” for suffering and this is a very complex task – why? • We all know of someone or have personally experienced – the way in which the bearing of suffering Transforms - BUT, it is cruel and inappropriate to say that suffering is good, this is pernicious thinking.

40. So what do we do with suffering? • If we insist that suffering must be abrogated at all costs, then we assume that all suffering is bad. Might the proper course of good palliative care mean we have to anaesthetise, euthanise even, all pain and suffering? • Might a too rigid pathways oriented outlook to medical care take us down this path? Do we: a) Assume that all pain and suffering is bad? b) Assume that all grief and bereavement is bad? b) Leave little flexibility for dealing with and bearing with anguish and suffering? c) Therefore, might best practice will call for the removal of pain and suffering as soon as they appear? • BUT, what if this may removes the opportunities for transformation and growth? • What if it avoids suffering all together?? • In euthanasia, the dying may have “escaped”, what is left behind?

41. In the 21st Century – the Germane Questions are: • How do we care for the dying, the survivors, and those who are ill in ways that doctors and nurses may not be able to help, which allows us to • “retain our humanity and be sensitive to someone else’s suffering without losing ourselves in that suffering?” De Hennezel (1998) • Confront and contain: • “The challenge of accepting the truth that we are finite and vulnerable human beings who seek love and meaning in the face of death (and loss!) and of finding courage and hope in that acceptance.”Barnard (1995) • Suffering too is a mystery – it cannot be labelled as good or bad! Nobody is saying that we should embrace suffering, yet it is also not right to avoid it!

42. The Good Death

43. Is this realistic? Dying is a lot like the real face of Christmas • “Christmas is a time when families all over the country get together and remind themselves of all the reasons why they're not together for the rest of the year. Perhaps this explains why the one thing many, many people want at Christmas is not a present, but rather to be absent. Until this happens, we all have to learn how to survive the sternest test of peace and good will at Christmas - the family.” • Guy Browning – The Guardian, Dec. 2001

44. If we… • …can’t get it together for Christmas – why do we expect to deliver a fairy-tale ending at the end of life when the stress levels and fractured relationships are at least 10 times worst than at Christmas time?

45. Delivering an “appropriate death” • Dame Cicely said: • ““…the whole experience of that [the patient’s] life was reflected in a patient’s dying” • There may be an eventwhich might look like a textbook “good-death” that we are exhorted to facilitate in hospice. • But whether that has actually happened, or needs to happen, or can even realistically happen, are different issues. • How will survivors feel if they feel that they fell short of a “good-death”?

46. Do think about what you do because… • The circle of our understandingIs a very restricted area.Except for a limited numberOf strictly practical purposesWe do not know what we are doing;And even then, when you think of it,We do not know much about thinking. • TS Eliot – The Family Reunion

47. To Summarise • Grief and Bereavement, their practices and the rituals and care we provide for them is a part of society, and is NOT immune to cultural and social changes. • Death is a mystery • Loss and Suffering is a part of normal life • The “Good-Death” may become a tyranny • Listening to Grief is to listen to an immortal song of mankind about how temporary our lives are • Attending to dying and grief is in many ways, not really about dying is it??