Less is More I Death: the ultimate lessness. Richard Smith Chair, Patients Know Best Former editor, BMJ

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1 Less is More I Death: the ultimate lessness Richard Smith Chair, Patients Know Best Former editor, BMJ

2 My argument Death is a good thing: Without death every birth would be a tragedy Our (British) society denies death This denial causes pain and suffering Death denial also diminishes living and causes problem beyond healthcare Doctors may be more part of the problem than the solution We need to rediscover the positive aspects of death and stop denying it

4 Shostakovich Quartet No 15 Composed in 1974, months before his death Like almost all his other quartets, it's a meditation on death Six movements, all adagio Play it "so that flies drop dead in mid-air, and the audience start leaving the hall from sheer boredom".

11 Artists inspired by death (crowdsourcing) Goya Mark Rothko Schubert Philip Larkin Hieronymous Bosch Edgar Allan Poe Shakespeare Michelangelo Dickens Tolstoy Picasso Wilfred Owen T S Eliot Webster Sylvia Plath Keats Francis Bacon Gabriel Garcia Marquez

12 Artists inspired by death (crowdsourcing) John Donne Christina Rossetti Rilke Bruegel Ingmar Bergman Thomas Hardy Philip Roth Edna St Vincent Millay John Dowland J S Bach Leonard Cohen Monteverdi Tennyson Damien Hirst

13 Of course all artists must in some ways deal with death because death is central perhaps the most central thing in our lives

14 Dirge without Music. Edna St. Vincent Millay I am not resigned to the shutting away of loving hearts in the hard ground. So it is, and so it will be, for so it has been, time out of mind: Into the darkness they go, the wise and the lovely. Crowned With lilies and with laurel they go; but I am not resigned. Lovers and thinkers, into the earth with you. Be one with the dull, the indiscriminate dust. A fragment of what you felt, of what you knew, A formula, a phrase remains, --- but the best is lost. The answers quick & keen, the honest look, the laughter, the love, They are gone. They have gone to feed the roses. Elegant and curled Is the blossom. Fragrant is the blossom. I know. But I do not approve. More precious was the light in your eyes than all the roses in the world. Down, down, down into the darkness of the grave Gently they go, the beautiful, the tender, the kind; Quietly they go, the intelligent, the witty, the brave. I know. But I do not approve. And I am not resigned.

16 All literary and philosophical representations of immortality are awful Heaven will be different beyond human imagining Tithonus Eos, the goddess of dawn, asked Zeus, to give her lover Tithonus immortality but forgot to ask for youth "When loathsome old age pressed full upon him, and he could not move nor lift his limbs, this seemed to her in her heart the best counsel: she laid him in a room and put to the shining doors. There he babbles endlessly, and no more has strength at all, such as once he had in his supple limbs." (Homeric Hymn to Aphrodite)

18 Tennyson mourning turned him into a poet. In Memoriam Oh happy men that have the power to die, And grassy barrows of the happier dead. Release me, and restore me to the ground; Thou seest all things, thou wilt see my grave: Thou wilt renew thy beauty morn by morn; I earth in earth forget these empty courts, And thee returning on thy silver wheels.

20 Bernard Williams s: The Makropulos case: reflections on the tedium of immortality, Elina Makropulos reached the age of 342 after being given the elixir of life by her father, a 16th century physician. Although 342 she is better thought of as having been 42 for 300 years Although vulnerable like any human being, she has not suffered from disease or injury, but her unending life has come to a state of boredom, indifference and coldness. Everything is joyless. For her singing and silence are the same. She refuses to take more of the elixir, ages horribly and dies. The formula for the elixir is destroyed.

22 Death denial in Britain (Dying Matters survey 2012) 64% of people do not feel comfortable talking to somebody who has a friend or family member who has died 24% have not known what to say 28% talk about the death only if the person mentions it first 65% agree that People in Britain are uncomfortable discussing dying and death (78% of those over 65)

23 Death denial in Britain 19% would like to die between 91 and 100 9% would like to die over 100 NB. 50% of people who die between 90 and 95 are demented 15% would like to live forever 14% of people think it is no part of the health professional's job to talk to me about where I would like to be cared for when dying and where I would like to die 52% want that conversation when diagnosed with a lifelimiting illness Only 14% want the conversation when well and healthy.

24 Death denial in Britain 40% have not discussed the type of funeral they would like 65% have not discussed where they would like to die 61% have not discussed the type of care and support they would like at the end of their lives

25 Death denial in Britain Phrases to avoid using the words death or dying: passed away (57%) deceased (23%) kicked the bucket (20%) passed on 18%) gone to a better place (17%) popped their clogs (17%) departed (14%) six feet under (12%) brown bread ( 10%) pegged it (9%), croaked (8%), met their maker (6%), fallen off their perch (4%), turned their toes up (2%), cashed in their chips (2%), sleeping the big sleep (1%)

26 In Glasgow where I was born death felt imminent. In canada where I trained it was thought inevitable. In California where I live now it's viewed as optional. Ian Morrison Jane Fonda, 74, at Cannes last month

28 Does death denial increase suffering and cause problems? 52% of people agree If we felt more comfortable talking about dying and death, people would be less likely to die alone 68% of people say that My quality of life is more important to me than how long I live for --but if nobody discusses death and denying then a) their wishes may not be known and b) may not be realised they may not know they are dying until it is close 88% of GPs agree that If people in Britain felt more comfortable discussing dying, death and bereavement, it would be easier to have our end of life wishes met.

29 Does death denial increase suffering and cause problems? People who are dying or bereaved can experience isolation because people don't know what to say or how to act towards them People die without wills, leaving complicated situations for their families and friends. Health care professionals struggle to have conversations with their patients about what care or treatments they want as they approach death. This makes it hard to plan the care that a person really wants If the fact that someone is dying is not acknowledged then opportunities to resolve issues and say goodbye may be missed

30 Denying death denies life He would teach men to die would teach them how to live. Tis the condition of your creation; death is a part of you, and whilst you endeavour to evade it, you evade yourselves. Montaigne Give place to others, as others have given place to you. Montaigne We are happier with death than we should be without it. Thomas Browne Without death, there is no time, no growth, no change...if we avert our eyes from death, we also erode the delight of living. The less we sense death, the less we live. Iona Health, the current president of the Royal College of General Practitioners

32 Denying death denies life The reluctance [to look death in the face] I take to be the root cause of most of our 21st century American sorrows (socioeconomic and aesthetic as well as cultural and political. I know that dying is unamerican, nowhere mentioned in our contractual agreement with providence, but to regard the mere fact of longevity as the supreme good without asking why or to what end strikes me as foolish, a misappropriation of time, thought, sentiment, electricity, and frequent flyer miles. Of the $2.4 trillion assigned last year to the care and feeding of our health care-apparatus, a substantial fraction paid the expenses of citizens in the last, often wretched, years of their lives. Who benefits from the inventory of suffering gathered in the Florida storage facilities? Lewis Lapham

34 Led, on the one hand, to deny the fact of death and to run headlong into the watery pleasures of forgetfulness, intoxication and the mindless accumulation of money and possessions. On the other hand, the terror of annihilation leads us blindly into a belief in the magical forms of salvation and promises of immortality offered by certain varieties of religion and many New Age (and some old age--medicine?) sophistries. Simon Critchley, The book of dead philosophers

36 Are doctors part of the problem of death denial? (Dying matters survey 2012) A third (35%) of GPs have never initiated a conversation with a patients about their end of life wishes (40% of male GPs, 29% of female GPs) 44% haven't written a will 48% haven't registered to become an NHS organ donor or have an organ donor card 54% haven't told somebody whether they want to be buried or cemated 65% haven't talked to someone about their end of life wishes 93% don't have any form of living will 79% agree that People in Britain are uncomfortable discussing dying, death and bereavement

37 National Confidential Enquiry into Patient Outcome and Death (NCEPOD) Terminally ill patients are suffering 'distressing' deaths because hospitals rush to try and resuscitate them, frequently against their wishes In one two-week period every one of 52 patients who explicitly stated that they wanted to be allowed to die were given cardiopulmonary resuscitation Other terminally ill patients were also given CPR even though it was not in their best interests. CPR has wrongly become the default setting in hospitals, rather than patients being assessed on a case-by-case basis. Nine out of ten patients had never been asked about their wishes should they suffer a cardiac arrest, despite being considered at high risk. Details of whether or not to administer CPR was recorded in the notes of only 122 of 526 patients. In seven cases, people with terminal illness were given CPR after a cardiac arrest, even though clinicians believed they would not recover from their illness and should be made comfortable in their last days.

38 Are doctors part of the problem of death denial? Two thirds of Dutch doctors say that doctors continue intensive treatment of dying patients for longer than is desirable. The diagnosis of dying is made too late Too many people die in intensive care People die in hospital when they want to die at home

40 The resistance to providing palliative care to patients was so deep that doctors would not look us in the eye when we recommended that they stop their efforts to save lives and start saving dignity instead...doctors were allergic to the smell of death. Death meant failure, defeat--their death, the death of medicine, the death of oncology. Nurse quoted in The emperor of diseases by Siddhartha Mukherjee

42 Ivan Illich. From Limits to medicine A society's image of death reveals the level of independence of its people, their personal relatedness, self reliance, and aliveness.

44 Atul Gawande In the past few decades, medical science has rendered obsolete centuries of experience, tradition, and language about our mortality, and created a new difficulty for mankind: how to die.

47 Death recovered Changing culture not easy End of life strategy Social movement: evidence, campaigns, petitions, songs, films, badges, marches, meetings, logos, badges Education in schools and of doctors. (If doctors are part of the problem is changing them central?) Legislation? Festivals

Marjorie Barlow (nee Cadel)

The Overmass and Chapple Service Room Marjorie Barlow (nee Cadel) 21 st March 1913-23 rd March 2010 15 th April 2010 2.00 pm England Women s Hockey Team 1946 Marjorie front row, far left, playing position