The denial of death

This document contains most of the exchanges among Murray Enkin, Alex Jadad and Richard Smith, while they co-created an editorial for publication in the 2011 BMJ Christmas issue. Our editorial is short, and we thought that at least some BMJ readers might be interested in the discussions that led us to our conclusions. The information appears in reverse chronological order. If you would like to respond to some of the material here we suggest that you send a rapid response to our editorial. Alex 111129 10:12 in Madrid, Spain This is the version accepted by Tony Delamothe, deputy editor of the BMJ, for publication in the BMJ Christmas issue. Death can be our friend Embracing the inevitable would reduce both unnecessary suffering and costs ”As birth and death actually occur, and our brief career is surrounded by vacancy, it is far better to live in the light of the tragic fact, rather than to forget or deny it, and build everything on a fundamental lie.” George Santayana “Oh build your ship of death. Oh build it! for you will need it. For the voyage of oblivion awaits you.” D H Lawrence Would you like to die the way your patients do, doctor? We suspect that many of you will answer no. Too many people are dying undignified, graceless deaths in hospital wards or intensive care units with doctors battling against death way past the point that is humane. Because too many doctors have forgotten that death is a friend, people are kept alive when all that makes life valuable has gone. Denying the inevitable comes with a heavy price. We believe that both doctors and their patients need to adopt a much more positive attitude to death in order to reduce suffering and costs. Death is one of the two great events of our lives. Beyond early childhood we must live with the certain knowledge of death; until medicine

began its unwinnable war against death coming to terms with your death was one of life's most important tasks. Ars Moriendi (The Art of Dying) from the early 15th century was a best seller for 200 years, and William Caxton printed 100 copies in 1491. Michel de Montaigne wrote in the 16th century: “’Tis the condition of your creation; death is a part of you, and whilst you endeavour to evade it, you evade yourselves.” He urges his readers to “Give place to others, as others have given place to you.” Sir Thomas Browne, the 17th century physician, said “We are happier with death than we should be without it.” Iona Health, a general practitioner, also writes positively about death: “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.” (1) But this way of thinking seems to have been largely forgotten or is ignored. Denial, a remarkably powerful force with undoubted benefits, is now the main social and personal response to death. “Death now seems to be optional,” says Ian Morrison, the futurologist. Consequences are huge sums of money spent in the last months of life, intense pressure to license extremely expensive drugs that extend life for just weeks, and uproar when a dying person is shown on television. Denial of death is a major cause of health costs rising everywhere, but the damage may be much wider than simply to our finances. “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),” writes Lewis Lapham, the American essayist. (2) Without death every birth would be a tragedy, and sadly we may already be at that point in our overpopulated polluted planet. Francis Bacon in the early 17th century was the first to argue that one of the tasks of medicine was to prolong life. He divided medicine into three parts: preservation of health; cure of disease; and prolongation of life-- “this,” he wrote, “is a new part, and deficient, though the most noble of all.” (3) In fact medicine, in contrast to public health, had little success with prolonging life until comparatively recently. But now that most of us die of complications of chronic incurable diseases, death is very much the territory of doctors. Nobody is dying until a doctor says so, and an increasing number of people die in intensive care units. “I’m running a warehouse for the dying” says an intensive care doctor quoted in an essay on death by the surgeon Atul Gawande. (4) Only about a fifth of patients emerge alive from American intensive care units. (4). Are doctors the main villains in the futile fight against death? “Who benefits” asks Lapham. “from the inventory of suffering gathered in the Florida storage facilities?” Ivan Illich argued that doctors became rich and influential in part because of their supposed ability to hold back death and by

their right to preside over death. (5) Modern medicine encouraged the decay of traditional means of making sense of death and dying in exchange for an implied but false promise of immortality. Gawande doesn't mention Illich in his brilliant and chilling essay, but he reached the same conclusion: “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.” (4) Siddhartha Mukherjee, the oncologist, in his Pulitzer prize winning book on cancer quotes a ward nurse who says: “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.” (6) All the evidence shows that the diagnosis of dying is made too late. (7) Is it possible for us to return to recognising all that is positive about death? If doctors have been the villains of the story might they now become the heroes? It was at this point that the three of us divided. Enkin, who is in his late 80s and as he puts it bluntly “statistically closest to death,” has confidence in conversation and education. Pieces like this together with others that we have quoted and, for example, from BMJ columnist Des Spence (8) will encourage debate and a change in attitude to death. Jadad, a supportive and palliative care physician who is horrified by much of what he sees, thinks something more drastic and urgent is needed to eliminate the iatrogenic suffering fueled by our denial of death. To that, Smith adds that perhaps those who pay for medicine and regulate it need to act. Ironically it may be the financial rather than the social and cultural cost of death that will encourage change. Perhaps the BMJ would like to promote a roadshow to discuss death; we think that we might find many people and many doctors ready to change. Murray Enkin, Professor Emeritus, McMaster University, Canada Alejandro R Jadad, Professor and Chair, University Health Network and University of Toronto, Toronto, Canada M5G 2C4 Richard Smith, Chair, Patients Know Best, London SW4 0LD Competing interest: All of us expect to die, and ARJ is paid part of his salary to support dying people. All of us have at some time been practising clinicians and benefited in status and salary from people's fear of death.

1. Heath I. Matters of life and death, Oxford: Radcliffe, 2007.

2. Lapham L. On deadline. Harper's Magazine May 2009: 7-10. 3. Ellis RL, Heath DD, Spedding J. The collected works of Francis Bacon. Routledge, 1996 4. Gawande A. Letting go. What should medicine do when it can't save your life. New Yorker August 2010: http://www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande?currentPage=all 5. Mukherjee S. The Emperor of All Maladies. London: Fourth Estate, 2011. 6. Gibbins J, McCoubrie R, Alexander N, Kinzel C, Forbes K. Diagnosing dying in the acute hospital setting—are we too late? Clinical Medicine 2009; 9: 116-9. 7. Spence D. Advance advanced directives, BMJ 2011;343:bmj.d7074

Richard 111128 09.57 Here’s a version that I hope we can submit today or tomorrow. I’ve read it without the track changes. The only issue we seem to have to resolve is the title and the subtitle, often the most difficult thing with a piece of writing. Death does have dominion A more positive attitude to death would reduce suffering and costs ”As birth and death actually occur, and our brief career is surrounded by vacancy, it is far better to live in the light of the tragic fact, rather than to forget or deny it, and build everything on a fundamental lie.” George Santayana “Oh build your ship of death. Oh build it! for you will need it. For the voyage of oblivion awaits you.” D H Lawrence Would you like to die the way your patients do, doctor? We suspect that many of you will answer no. Too many people are dying undignified, graceless deaths in intensive care with doctors battling against death way past the point that is humane. Because too many doctors have forgotten that death is a friend, people are kept alive when all that makes life valuable has gone. Denying the inevitable comes with a heavy price. We believe that both doctors and their patients need to adopt a much more positive attitude to death in order to reduce suffering and costs. Death is one of the two great events of our lives. Beyond early childhood we must live with the certain knowledge of death; until medicine began its unwinnable war against death coming to terms with your death was one of life's most important tasks. Ars Moriendi (The Art of Dying) from the early 15th century was a best seller for 200 years, and William Caxton

printed 100 copies in 1491. Michel de Montaigne wrote in the 16th century. “Tis,the condition of your creation; death is a part of you, and whilst you endeavour to evade it, you evade yourselves.” He urges his readers to “Give place to others, as others have given place to you.” Sir Thomas Browne, the 17th century physician, said “We are happier with death than we should be without it.” Iona Health, a general practitioner, also writes positively about death: “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.” (1) But this way of thinking seems to have been largely forgotten or is ignored. Denial, a remarkably powerful force with undoubted benefits, is now the main social and personal response to death. “Death now seems to be optional,” says Ian Morrison, the futurologist. Consequences are huge sums of money spent in the last months of life, intense pressure to license extremely expensive drugs that extend life for just weeks, and uproar when a dying person is shown on television. Denial of death is a major cause of health costs rising everywhere, but the damage may be much wider than simply to our finances. “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),” writes Lewis Lapham, the American essayist. (2) Without death every birth would be a tragedy, and sadly we may already be at that point in our overpopulated polluted planet. Francis Bacon in the early 17th century was the first to argue that one of the tasks of medicine was to prolong life. He divided medicine into three parts: preservation of health; cure of disease; and prolongation of life-- “this,” he wrote, “is a new part, and deficient, though the most noble of all.” (3) In fact medicine, in contrast to public health, had little success with prolonging life until comparatively recently. But now that most of us die of complications of chronic incurable diseases, death is very much the territory of doctors. Nobody is dying until a doctor says so, and an increasing number of people die in intensive care units. “I’m running a warehouse for the dying” says an intensive care doctor quoted in an essay on death by the Boston surgeon Atul Gawande. (4) Only about a fifth of patients emerge alive from American intensive care units. Are doctors the main villains in the futile fight against death? “Who benefits” asks Lapham. “from the inventory of suffering gathered in the Florida storage facilities?” Ivan Illich argued that doctors became rich and influential in part because of their supposed ability to hold back death and by their right to preside over death. (5) Modern medicine encouraged the decay of traditional means of making sense of death and dying in exchange for an implied but false promise of immortality. Gawande doesn't mention Illich in his brilliant and chilling essay, but he reached the same conclusion: “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.” (4) Siddhartha Mukherjee, the young oncologist, in his Pulitzer prize winning book on cancer quotes a ward nurse who says: “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.” (6) All the evidence shows that the diagnosis of dying is made too late. (7) Is it possible for us to return to recognising all that is positive about death? If doctors have been the villains of the story might they now become the heroes? It was at this point that the three of us divided. Enkin, who is in his late 80s and as he puts it bluntly “statistically closest to death,” has confidence in conversation and education. Pieces like this together with others that we have quoted and, for example, from BMJ columnist Des Spence (8) will encourage debate and a change in attitude to death. Jadad, a supportive and palliative care physician who is horrified by much of what he sees, thinks something more drastic and urgent is needed

to eliminate the iatrogenic suffering fueled by our denial of death. To that, Smith adds that perhaps those who pay for medicine and regulate it need to act. Ironically it may be the financial rather than the social and cultural cost of death that will encourage change. Perhaps the BMJ would like to promote a roadshow to discuss death; we think that we might find many people and many doctors ready to change. Murray Enkin. Professor Emeritu, McMaster Unievsity, Canada Alejandro R. Jadad, Professor and Chair, University Health Network and University of Toronto, Toronto, Canada M5G 2C4 Richard Smith, chair, Patients Know Best, London SW4 0LD 1 Heath I. Matters of life and death, Oxford: Radcliffe, 2007. 2 Lapham L. On deadline. Harper's Magazine May 2009: 7-10. 3.Ellis RL, Heath DD, Spedding J. The collected works of Francis Bacon. Routledge, 1996 4. Gawande A. Letting go. What should medicine do when it can't save your life. New Yorker August 2010: http://www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande?currentPage=all 5. Mukherjee S. The Emperor of All Maladies. London: Fourth Estate, 2011. 6 Gibbins J, McCoubrie R, Alexander N, Kinzel C, Forbes K. Diagnosing dying in the acute hospital setting—are we too late? Clinical Medicine 2009; 9: 116-9. 7 Spence D.Advance advanced directives, BMJ 2011;343:bmj.d7074 Alex 111126 08:17 [The following version includes changes made by Richard and Alex today. The full annotated version is now a Word file that Murray and Richard should have received a few minutes ago. Richard could not access this site while waiting at Dubai Airport. Despite a painfully slow Internet connection at Miami Airport, Alex managed to paste the text of the most recent version below, which may miss some of the notes inserted in the Word file in the past week] Death does have dominion[AJ1] [r2] A more positive attitude to death would reduce suffering and costs[AJ3] ”As birth and death actually occur, and our brief career is surrounded by vacancy, it is far better to live in the light of the tragic fact, rather than to forget or deny it, and build everything on a fundamental lie.” George Santayana

“Oh build your ship of death. Oh build it! for you will need it. For the voyage of oblivion awaits you.” DH Lawrence Would you like to die the way your patients do, doctor? We suspect that many of you will answer no. Too many people are dying undignified, graceless deaths in intensive care with doctors battling against death way past the point that is humane. Because too many doctors have forgotten that death is a friend, people are kept alive when all that makes life valuable has gone. Denying the inevitable comes with a heavy price. We believe that both doctors and their patients need to adopt a much more positive attitude to death in order to reduce suffering and costs. Death is one of the two great events of our lives. Beyond early childhood we must live with the certain knowledge of death; until medicine began its unwinnable war against death coming to terms with your death was one of life's most important tasks. Ars Moriendi (The Art of Dying) from the early 15th century was a best seller for 200 years, and William Caxton printed 100 copies in 1491. Michel de Montaigne wrote in the 16th century. “Tis,the condition of your creation; death is a part of you, and whilst you endeavour to evade it, you evade yourselves.” He urges his readers to “Give place to others, as others have given place to you.” Sir Thomas Browne, the 17th century physician, said “We are happier with death than we should be without it.” Iona Health, a general practitioner, also writes positively about death: “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.” (1) But this way of thinking seems to have been largely forgotten or is ignored. Denial, a remarkably powerful force with undoubted benefits, is now the main social and personal response to death. “Death now seems to be optional,” says Ian Morrison, the futurologist. Consequences are huge sums of money spent in the last months of life, intense pressure to license extremely expensive drugs that extend life for just weeks, and uproar when a dying person is shown on television. Denial of death is a major cause of health costs rising everywhere, but the damage may be much wider than simply to our finances. “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),” writes Lewis Lapham, the American essayist. (2) Without death every birth would be a tragedy, and sadly we may already be at that point in our overpopulated polluted planet. Francis Bacon in the early 17th century was the first to argue that one of the tasks of medicine was to prolong life. He divided medicine into three parts: preservation of health; cure of disease; and prolongation of life-- “this,” he wrote, “is a new part, and deficient, though the most noble of all.” (3) [AJ4] In fact medicine, in contrast to public health, had little success with prolonging life until comparatively recently. But now that most of us die of complications of chronic incurable diseases, death is very much the territory of doctors. Nobody is dying until a doctor says so, and an increasing number of people die in intensive care units. “I’m running a warehouse for the dying” says an intensive care doctor quoted in an essay on death by the Boston surgeon Atul Gawande. (4) Only about a fifth of patients emerge alive from American intensive care units. Are doctors the main villains in the futile fight against death? “Who benefits” asks Lapham. “from the inventory of suffering gathered in the [AJ5] Florida storage facilities?” Ivan Illich argued that doctors became rich and influential in part because of their supposed ability to hold back death and by their right to preside over death. (5) Modern medicine encouraged the decay of traditional means of making sense of death and dying in exchange for an implied but false promise of immortality. Gawande doesn't mention Illich in his brilliant and chilling essay, but he reached the same conclusion: “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.” (4) Siddhartha Mukherjee, the young oncologist, in his Pulitzer prize winning book on cancer quotes a ward nurse who says: “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.” (6) All the evidence shows that the diagnosis of dying is made too late. (7) Is it possible for us to return to recognising all that is positive about death? If doctors have been the villains of the story might they now become the heroes? It was at this point that the three of us divided. Enkin, who is in his late 80s and as he puts it bluntly “statistically closest to death,” has confidence in conversation and education. Pieces like this together with others that we have quoted and, for example, from BMJ columnist Des Spence (8) will encourage debate and a change in attitude to death. Jadad, a supportive and palliative care physician who is horrified by much of what he sees, thinks something more drastic and urgent is needed to eliminate the iatrogenic suffering fueled by our denial of death. To that, Smith adds that perhaps those who pay for medicine and regulate it need to act. Ironically it may be the financial rather than the social and cultural cost of death that will encourage change. Perhaps the BMJ would like to promote a roadshow to discuss death; we think that we might find many people and many doctors ready to change. Murray Enkin Alejandro R. Jadad, University Health Network and University of Toronto, Toronto, Canada M5G 2C4 Richard Smith, chair, Patients Know Best, London SW4 0LD

1 Heath I. 2 Lapham L. Deadlines. 3.Ellis RL, Heath DD, Spedding J. The collected works of Francis Bacon. Routledge, 1996 4. Gawande A. 5. Mukherjee S. The Empress of All Maladies. 6 Death diagnosed too late 7 Spence D.

[AJ1]It would be great to have a catchier title, or even better one that would focus on denial or acceptance, perhaps presented as a provocative question. [r2]The current title is a reference to Dylan Thomas’s famous poem. Here are other possibilities: “Time to stop denying death”; “Death rediscovered”; “Death is our friend;” “Death is a friend not an enemy” [AJ3] ALEX 111126 07:50 EST: I love Thomas’s poem, but most people, particularly those for whom English is not their first language, would miss the point. Other possibilities are: “Befriending death: embracing the inevitable would reduce unnecessary suffering and costs” “Death is our friend: embracing it would reduce unnecessary suffering and costs” [AJ4]The reference should be inserted here: Ellis RL, Heath DD, Spedding J. The collected works of Francis Bacon. Routledge, 1996

[AJ5]Is this “the” appropriate here? Alex 111122 00:15 EST The following is the latest version of the draft editorial. My comments appear as footnotes. Changes made by Murray and me did not transfer to this Google Document, but are evident in the Word file I sent to Richard and Murray via email a few minutes ago. Death does have dominion[AJ1] A more positive attitude to death would reduce suffering and costs ”As birth and death actually occur, and our brief career is surrounded by vacancy, it is far better to live in the light of the tragic fact, rather than to forget or deny it, and build everything on a fundamental lie.” George Santayana (1) “Oh build your ship of death. Oh build it! for you will need it. For the voyage of oblivion awaits you.” DH Lawrence (2) Would you like to die the way your patients do, doctor? We suspect that many of you will answer no. Too many people are dying undignified, graceless deaths in intensive care with doctors battling against death way past the point that is humane. Because too many doctors have forgotten that death is a friend, people are kept alive when all that makes life valuable has gone. Denying the inevitable comes with a heavy price. We believe that both doctors and their patients need to adopt a much more positive attitude to death in order to reduce suffering and costs. Death is one of the two great events of our lives. Beyond early childhood we must live with the certain knowledge of death; until medicine began its unwinnable war against death coming to terms with your death was one of life's most important tasks. Ars Moriendi (The Art of Dying) from the early 15th century was a best seller for 200 years, and William Caxton printed 100 copies in 1491. Michel de Montaigne wrote in the 16th century. “Tis,the condition of your creation; death is a part of you, and whilst you endeavour to evade it, you evade yourselves.” He urges his readers to “Give place to others, as others have given place to you.” Sir Thomas Browne, the 17th century physician, said “We are happier with death than we should be without it.” Iona Health also writes positively about death: “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.” (3) But this way of thinking seems to have been largely forgotten or is ignored. Denial, a remarkably powerful force with undoubted benefits, is now the main social and personal response to death. “Death now seems to be optional,” says Ian Morrison, the futurologist. Consequences are huge sums of money spent in the last months of life, intense pressure to license extremely expensive drugs that extend life for just weeks, and uproar when a dying person is shown on television. Denial of death is a major cause of health costs rising everywhere, but the damage may be much wider than simply to our finances. “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),” writes Lewis Lapham, the American essayist. (4) Without death every birth would be a tragedy, and sadly we may already be at that point in our overpopulated polluted planet. Francis Bacon in the early 17th century was the first to argue that one of the tasks of medicine was to prolong life. He divided medicine into three parts: preservation of health; cure of disease; and prolongation of life-- “this,” he wrote, “is a new part, and deficient, though the most noble of all.” [AJ2] In fact medicine, in contrast to public health, had little success with prolonging life until comparatively recently. But now that most of us die of complications of chronic incurable diseases, death is very much the territory of doctors. Nobody is dying until a doctor says so, and an increasing number of people die in intensive care units. “I’m running a warehouse for the dying” says an intensive care doctor quoted in an essay on death by the Boston surgeon Atul Gawande. (5) Only about a fifth of patients emerge alive from American intensive care units. Are doctors the main villains in the futile fight against death? “Who benefits” asks Lapham. “from the inventory of suffering gathered in the [AJ3] Florida storage facilities?” Ivan Illich argued that doctors became rich and influential in part because of their supposed ability to hold back death and by their right to preside over death. (6) Modern medicine encouraged the decay of traditional means of making sense of death and dying in exchange for an implied but false promise of immortality. Gawande doesn't mention Illich in his brilliant and chilling essay, but he reached the same conclusion: “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.” Siddhartha Mukherjee, the young oncologist, in his Pullitzer prize winning book on cancer quotes a ward nurse who says: “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.” (7) All the evidence shows that the diagnosis of dying is made too late. (8) Is it possible for us to return to recognising all that is positive about death? If doctors have been the villains of the story might they now become the heroes? It was at this point that the three of us divided. Enkin, who is 87 and as he puts it bluntly “statistically closest to death,” has confidence in conversation and education. Pieces like this together with others that we have quoted and, for example, from BMJ columnist Des Spence (9) will encourage debate and a change in attitude to death. Jadad, a supportive and palliative care physician who is horrified by much of what he sees, thinks something more drastic and urgent is needed to eliminate the iatrogenic suffering fueled by our denial of death. To that, Richard adds that perhaps those who pay for medicine and regulate it need to act. Ironically it may be the financial rather than the social and cultural cost of death that will encourage change. Perhaps the BMJ would like to encourage a roadshow to discuss death; we think that we might find many people ready to change.

[AJ1]It would be great to have a catchier title, or even better one that would focus on denial or acceptance, perhaps presented as a provocative question. [AJ2]The reference should be inserted here: Ellis RL, Heath DD, Spedding J. The collected works of Francis Bacon. Routledge, 1996 [AJ3]Is this “the” appropriate here?

-----------------------------------------------------------------------------------------------------------------------

Richard’s first draft (I haven’t added the references yet) NB. I’ve probably overdone the quotes and underdone the data, but many of the quotes are so marvellous: The piece is about a 1000 words, which the BMJ would probably accept--but get to work. Death does have dominion A more positive attitude to death would reduce suffering and costs ”As birth and death actually occur, and our brief career is surrounded by vacancy, it is far better to live in the light of the tragic fact, rather than to forget or deny it, and build everything on a fundamental lie.”George Santayana (1) “Oh build your ship of death. Oh build it! for you will need it. For the voyage of oblivion awaits you.” DH Lawrence (2)

Would you like to die the way your patients do, doctor? We suspect that many of you will answer no. Too many people are dying undignified, graceless deaths in intensive care with doctors battling against death way past the point that is humane. Because too many doctors have forgotten that death is a friend, people are kept alive when all that makes life valuable has gone. Denying the inevitable comes with a heavy price. We believe that both doctors and their patients need to adopt a much more positive attitude to death in order to reduce suffering and costs. Death is one of the two great events of our lives. Beyond early childhood we must live with the certain knowledge of death; until medicine began its unwinnable war against death coming to terms with your death was one of life's most important tasks. Ars Moriendi (The Art of Dying) from the early 15th century was a best seller for 200 years, and William Caxton printed 100 copies in 1491. Michel de Montaigne wrote in the 16th century. “Tis,the condition of your creation; death is a part of you, and whilst you endeavour to evade it, you evade yourselves.” He urges his readers to “Give place to others, as others have given place to you.” Sir Thomas Browne, the 17th century physician, said “We are happier with death than we should be without it.” Iona Health, the current president of the Royal College of General Practitioners also writes positively about death: “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.” (3) But this way of thinking seems to have been largely forgotten or is ignored. Denial, a remarkably powerful force with undoubted benefits, is now the main social and personal response to death. “Death now seems to be optional,” says Ian Morrison, the futurologist. Consequences

are huge sums of money spent in the last months of life, intense pressure to license extremely expensive drugs that extend life for just weeks, and uproar when a dying person is shown on television. Denial of death is a major cause of health costs rising everywhere, but the damage may be much wider than simply to our finances. “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),” writes Lewis Lapham, the American essayist. (4) Without death every birth would be a tragedy, and sadly we may already be at that point in our overpopulated polluted planet. Francis Bacon in the early 17th century was the first to argue that one of the tasks of medicine was to prolong life. He divided medicine into three parts: preservation of health; cure of disease; and prolongation of life-- “this,” he wrote, “is a new part, and deficient, though the most noble of all.” In fact medicine, in contrast to public health, had little success with prolonging life until comparatively recently. But now death is very much the territory of doctors. Nobody is dying until a doctor says so, and an increasing number of people die in intensive units. “I’m running a warehouse for the dying” says an intensive care doctor quoted in an essay on death by the Boston surgeon Atul Gawande. (5) Only about a fifth of patients emerge alive from American intensive care units. Are doctors the main villains in the futile of death? “Who benefits” asks Lapham. “from the inventory of suffering gathered in the Florida storage facilities?” Ivan Illich argued that doctors became rich and influential in part because of their supposed ability to hold back death and by their right to preside over death. (6) Modern medicine encouraged the decay of traditional means of making sense of death and dying in exchange for an implied but false promise of immortality. Gawande doesn't mention Illich in his brilliant and chilling essay, but he reached the same conclusion: “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.” Siddhartha Mukherjee, the young oncologist, in his Pullitzer prize winning book on cancer quotes a ward nurse who says: “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.” (7) All the evidence shows that the diagnosis of dying is made too late. (8) Is it possible for us to return to recognising all that is positive about death? If doctors have been the villains of the story might they now become the heroes? It was at this point that three three of us divided. Enkin, who is 87 and as he puts it bluntly “statistically closest to death,” has confidence in conversation and education. Pieces like this together with others that we have quoted and, for example, from BMJ columnist Des Spence a few weeks ago (9) will encourage debate and a change in attitude to death. Jadad, a palliative care physician who sees people die every week and is horrified by much of what he sees, thinks something more drastic is needed: perhaps those who pay for medicine and regulate it need to act. Ironically it may be the financial rather than the social and cultural cost of death that will encourage change. Perhaps the BMJ would like to encourage a roadshow to discuss death; we think that we might find many people ready to change.ß

[ME1]I agree that this is a great draft, Richard, and that there are too many quotes, even though the quotes are marvelous

Richard, Murray and Alex 111117 [Skype and Google Document] 0830 EST/13:30 GMT [To potential readers who did not participate in this exchange: We spent most of the first 30 minutes of this three-way session discussing how we would produce the first full draft of the paper, and how to end the article with a forceful message that departs from motherhood statements or vacuous hopeful motherhood statements. Forty-five minutes into our session, Murray, in clear role reversal mode, called for a more practical direction for our interactions. Richard agreed to prepare the first draft. Alex and Murray will use the “Comments” feature of Google Documents to annotate it, whenever possible. We also agreed to end the article with wishes from our personal perspectives: Murray asking for patients and hope for change that would resemble what happened with childbirth during his lifetime; Richard asking for interventions such as decisions to stop paying for futile treatments; Alex pushing for more aggressive measures, as he fears how he might die, given how his patients die and the lack of progress in moving towards a society that values a good death]

• Intro paragraph announcing our theme that death is inevitable, doctors have overdone trying to fend it off, which isn’t good for anybody, that we should see acceptance of death as healthy, and that medicine and societies need to encourage a debate to move in that direction

• Death is the great event of our lives. We tend to deal with it by denying it, which is understandable and has benefits. Doctors, encouraged by society, have become death deniers, peddlers of immortality

• Evidence on doctors denying death

• Emphasis on the iatrogenic angle of denial

• Arguments for acceptance of death, many from philosophers

• It would be better for society, doctors, all of us to accept death, but how can we make that happen? By much more discussion of death, including in schools, and by not hiding death away.

Richard 17 November Quote from 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.” This is pure Illich. “I’m running a warehouse for the dying.” ICU doctor quoted by Gawande. A thought: could we give interested people access to this document to see how our editorial came about? I suggest that we start with both the quotes Then it should be:

• Intro paragraph announcing our theme that death is inevitable, doctors have overdone trying to fend it off, which isn’t good for anybody, that we should see acceptance of death as healthy, and that medicine and societies need to encourage a debate to move in that direction

• Death is the great event of our lives. We tend to deal with it by denying it, which is understandable and has benefits. Doctors, encouraged by society, have become death deniers, peddlers of immortality

• Evidence on doctors denying death

• Arguments for acceptance of death, many from philosophers

• It would be better for society, doctors, all of us to accept death, but how can we make that happen? By much more discussion of death, including in schools, and by not hiding death away

Hello again. Your outline is succinct, and it should be straightforward to flesh it out. Once again, though, there are two other points I would like to bring in, at the appropriate place. 1. death is not only inevitable, it is essential. Essential for growth, essential for renewal. Agree. “Without death every birth would be a tragedy.” 2. denial of death is societal of course, but it is also iatrogenic, and I think that we should stress the role of medicine in encouraging, feeding, and even doing well by that denial. This is, to me the most delicate, but also most important message.You’re completely right, Richard, that we need evidence on this point, and my gut feeling is that there won’t be any evidence to support that statement. Nevertheless, we might be able to get the ball rolling, by making the statement and lets see if anyone has a good rebuttal to it. I’m convinced that it is true, in the same way that pharmaceutical houses stand to gain by people thinking they need medication, or teachers gain by students who think they need education. This doesn’t mean that the needs are not real, but the self-interest of providers who fill these needs have an incentive to perhaps provide more than is needed. Fee for service payments do encourage more units of service provided. Again I agree, but this is a place where we need evidence not just statements. This could create an opportunity for us to challenge the need for evidence... (By the way, we could be using the chat tool. Look to your top right quadrant... I just opened it) We can perhaps use stories, a form of evidence. the paper by Atul Gawande on death in America might be a place to start, although the US is perhaps one of the leaders in death denial.. It’s at least a starting point for our discussion. I look forward to our Skype call.

• ”As birth and death actually occur, and our brief career is surrounded by vacancy, it is far better to live in the light of the tragic fact, rather than to forget or deny it, and build everything on a fundamental lie.”

George Santayana

“Oh build your ship of death. Oh build it! for you will need it.

For the voyage of oblivion awaits you.” DH Lawrence

• Would you like to die the way your patients do, doctor? • You probably haven’t thought about how or even where you want to die--because

the usual response to death, assisted by doctors, is to deny it

• There are many benefits to denying death, but they are transient • Beyond a certain point, continuing to deny death becomes counterproductive

• As doctors, we are professionals hired to keep death at bay • We benefit from the illusion that we can prevent it • The illusion is a delusion • We become delusional ourselves (we come to believe our own illusion)

• We do a good job of enhancing the denial. We peddle immortality • We believe we are doing good, but we make dying worse • Denial becomes an iatrogenic disease

• What are we going to do about this? • Maybe as a profession it is time to take a new look at ourselves, recognize the

inevitability of dying and contribute to a good death • We propose that a society and health system that accepts the dominion of death

and sees “ a good death” as one of its highest achievements will be a society that is much healthier than a death denying society.

Richard 13 November I started editing your two paras, which generally I like, but as the piece will be only 800 words long, I think that we need to lay out our whole thesis in the para--and the current first para doesn’t do that.

I wonder therefore if you might have another go. We also need I think to lay out our argument in five or so bullet points, each of which will then form the topic sentence of a paragraph. At the moment you have too many bullet points. Will you do this, or shall I have a go? Or shall we Skype again? I think that it would be best to carry on in writing as that forces conciseness and precision on us. I wondered too if we might startw ith this quote from D H Lawrence’s poem “The ship of death” Oh build your ship of death. Oh build it! for you will need it. For the voyage of oblivion awaits you. Alex and Murray 111110 How about a much more aggressive opening paragraph? The following was our best attempt tonight: Would you like to die the way your patients do, doctor? You would have a limited number of options. You could die in your sleep (if you are lucky); suddenly or quickly, with minimum suffering; after a long decline in contented (for you) dementia; or after months or years of harrowing treatment. Suicide (assisted?) might, of course, be another option. You may have a preference, but would often not have a choice. Your doctor may be the one to call the shots. You probably haven’t thought about this, about how or even where you want to die--because, like most people, you would tend to think that death is something that happens to someone else. There is nothing as hard to grasp as the obvious. When we say that ‘nothing is inevitable but death and taxes’, we are trivializing death. Many people have found ways of avoiding taxes, but so far no one has found a way to avoid death, the one and only non-trivial truly inevitable element of our lives. Denying the inevitable comes with a heavy price. For some, the price may be worthwhile. [Richard: this is as far as we could go tonight without your input. Do you have any comments to make about our suggested first two paragraphs? The reminder is just a copy of previous thoughts]

• This denial may be comforting to some, those who can and do accept it. • If you do not consider the denial of death to be a problem, read no further. • To the many who cannot, or do not accept death’s inevitability, the conflict is, to

put it mildly, discomfiting. • The acceptance of the reality that mortality is inevitable can be comforting. • ‘When death is inevitable, relax and enjoy it’ • Once we recognize that death is inevitable, that we can no longer comfortably

deny it, then continuing to deny it becomes a source of discomfort, dis-ease.

• The dis-ease is a symptom of a long standing, pre-historic, pre-scientific, pre-enlightenment era, when it may have had some evolutionary (self-protective) value as a gene or as a meme.

• Healers did not cause it; but they gain from it, profit from it, establish their position/status in the community because of it.

• The incentive is in the wrong place.

• As doctors one of our functions is treating dis-ease. • We should not be the cause of the dis-ease, or at least we should not aggravate

it or make it stronger. • Our motto of ‘Primum non nocere’ should include ‘expunge iatrogenesis’

• Some examples of obvious iatrogenesis include Vioxx, thalidomide, avandia, hormone replacement therapy, mutilating surgery,

• Less obvious, but increasingly recognized examples include unwarranted screening (PSA, annual exams).

• More subtle examples include the overall medicalization of society (Illich, Angell).

We propose that a society and health system that accepts the dominion of death and sees “ a good death” as one of its highest achievements will be a society that is much healthier than a death denying society. Murray 111107 I like your first paragraph, Richard. It grabs the reader from the start, with its startling question. But that question personalized the denial to ourselves. I played with variants. For instance, “All our patients are going to die; the only unknowable is when and how” might be a way to show from the start that we are talking doctor to doctor. We could then end the piece with “All our patients are going to die. So are we.” But I pretty well discarded that, as being too cute. Still, the point may be worth discussing in our next Skype talk. In an 800 word piece the first paragraph sets the tone, and really sets the outline, so I think that we need to establish that first paragraph first. If we then go on to the rest, then have to go back and change the first paragraph again because it no longer looks right, so be it. Continuing to deconstruct Richard’s draft first paragraph, I am uncomfortable with the categorical four options. We could dichotomize them temporally into two (rapid or prolonged); or think of them spatially (home, hospice, or hospital); we could address the acceptently

Richard 111106: 12.26 London time As a next step, might you provide an outline--the point of each para. We could agree that and then one of you could write a first draft. What about this as a first para: Have you thought about how you want to die? You have essentially four options: sudden death; the long decline of dementia; the rapid decompensation over weeks after months or years of being treated for cancer; and the long decline with sudden, unpredictable dips of organ failure. Assisted suicide might, of course, be another option. You probably haven’t thought about how or even where you want to die--because the usual response to death, assisted by doctors, is to deny it. But our death is more certain than anything, even taxes, and we propose that a society and health system that accepts the dominion of death and sees “ a good death” as one of its highest achievements will be a society that is much healthier than a death denying society.

Murray and Alex 111102 17:43

• We think that we have the outline sufficiently to our satisfaction, to start drafting something now.

• We need a powerful opening paragraph, to grab readers’ attention and establish our credibility.

• We could use the ‘funnel approach’ suggested at http://www.youtube.com/watch?v=clPtbFT23Bs

• Do we start with a question, a startling statistic or a quotation?

Alex and Murray 111102 17:01

• We met again at Murray’s place today. Murray showed Alex what he had written (see below), and the latter liked the proposed approach, with a caveat: the ‘so what?’ piece is missing. Murray agreed.

• The following questions emerged: o Can we change ‘human nature’? o What is ‘human nature’?

• There are aspects of so called human nature that are clearly mutable. Concepts like a flat earth or a geocentric solar system have changed. Violence as expressed in a per capita basis seems to be decreasing (see Pinker). The nature of what is considered to be ‘evidence’ is shifting over the past five centuries from a primarily theistic to a predominantly ‘scientific’ model (as yet incompletely)

• The expression ‘you cannot change human nature’ may or may not be true. Certainly, some aspects of behaviour and cognition have changed and hence are malleable.

• The key question then is: ‘Can we modify the self-destructive aspects of human nature before we self-destruct?’

• Put differently, “Can we modify the self-destructive behavioral and cognitive responses to the denial of death?’

• Based on past and present experience, we believe that these responses can be modified at least on the individual level in the short term and on the collective level in the long.

• How could we achieve such change? • Another key piece of insight that emerged today, related to Richard’s comments

on our Op Ed, is the fact that if a problem is not recognized, there could be no useful approach to tackle it. ‘If it ain’t broke, don’t fix it’

Murray 111102 16:26

• We’re too serious, both in the outline I wrote an hour ago, and even more so in the references we are using (Becker, Montaigne) that take it too seriously. Our job is to entertain, inform, stimulate thinking a bit.

• The task is a small, bite sized one. To prepare, within a three or four week maximum timetable, an article that BMJ readers will find chortly, and maybe a bit thought provoking.

• We can do it if we take it as a bite-sized task, and don’t try to do too much. I think.

• Maybe Alex and Richard can eventually take it to book length. I think that I am too lazy, or too old (which may be largely the same thing).

• In any case, that is not the job of the moment. I still think that we should go over and tear apart my outline, or start a new one.

• Or, of course, forget it. It’s not a matter of life or death, it’s a matter of enjoyment, entertainment, game-playing, and beans.

Murray: 111102 15:03 [Draft outline for editorial]

• There is nothing as hard to grasp as the obvious • We give lip service to ‘nothing is inevitable but death and taxes’, thus trivializing

death because a lot of people have found ways of avoiding taxes. Indeed, this has almost become acceptable behaviour.

• Death is the one and only non-trivial but truly inevitable element of our lives. • By trivializing it we are actually denying that which we really know can not be

denied.

• This denial may be comforting to some, those who can and do accept it. • If you do not consider the denial of death to be a problem, read no further.

• To the many who cannot, or do not accept death’s inevitability, the conflict is, to put it mildly, discomfiting.

• The acceptance of the reality that mortality is inevitable can be comforting. • ‘When death is inevitable, relax and enjoy it’

• Once we recognize that death is inevitable, that we can no longer comfortably deny it, then continuing to deny it becomes a source of discomfort, dis-ease.

• The dis-ease is a symptom of a long standing, pre-historic, pre-scientific, pre-enlightenment era, when it may have had some evolutionary (self-protective) value as a gene or as a meme.

• Healers did not cause it; but they gain from it, profit from it, establish their position/status in the community because of it.

• The incentive is in the wrong place.

• As doctors one of our functions is treating dis-ease. • We should not be the cause of the dis-ease, or at least we should not aggravate

it or make it stronger. • Our motto of ‘Primum non nocere’ should include ‘expunge iatrogenesis’

• Some examples of obvious iatrogenesis include Vioxx, thalidomide, avandia, hormone replacement therapy, mutilating surgery,

• Less obvious, but increasingly recognized examples include unwarranted screening (PSA, annual exams).

• More subtle examples include the overall medicalization of society (Illich, Angell).

The following was written facetiously, but we should conclude with something along these lines:

1. It’s all a matter of the P’s and Q’s. 2. The P’s are obvious:

3. The fundamental changes will have to come from the Public, Philosophers and Politicians. but as Professionals we are responsible for the our Part.

4. The Q’s are just as important. When will we learn to Quash (Quell?) our perverse incentives, Query our atavistic impulses, Question our long standing assumptions?

These are the initial set of notes captured during and after our Skype session on 111101:

• The denial is all around us • Physicians make it worse. We are agents who exacerbate it and profit from it • How do we get out of it or slow it down? Could we get out of it? • Acceptance is a key issue to consider • Illich and the expropriation of health (a historical perspective) • Montaigne and his essay has many valuable insights • Palliative care could be hindering • What proportion of physicians have seen people die? • Overzealous treatment • Denial of death a la Becker and Freud • Profit:

o Financial o Personal o Social

References Human uniqueness and the denial of death (Nature piece) Death denial by Ernest Becker (most of the book is available through Google) That to philosophise is to learn to die by Montaigne

Other fragments from Richard.

From John Gray’s article on humanity’s quest for immortality: “The advances of knowledge cannot deliver humans from themselves, and if they use science to direct the course of evolution the result will be to engender monsters.” “Science [read medicine] enlarges what humans can do. It cannot reprieve them from being what they are.”

From “On deadline” by Lewis Lapham “To learn how to die is to unlearn how to be a slave.” “No man can be counted happy until he is dead.” “ I lacked the [Christian?] documents to clear customs in Heaven.” “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.” “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” “He would teach men to die would teach them how to live.” Montaigne “Now it is time that we were going, I to die and you to live; but which of us has the happier prospect is unknown to anyone but God.” Socrates “The stillness of the soul’s dialogue with itself...It is the achievement of a calm that accompanies existing in the present without forethought or regret. I know of no other immortality.” Montaigne/Critchley “It is the refusal to inject myself with the fear of death that sells the financial, pharmaceutical, and political products guaranteed to restore the youthful bloom of immortality.” Simon Critchley Absent a coming to terms with death, how do we address the questions of environmental degradation and social injustice certain to dominate the misfortunes of the 21st century? “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?” From “The Empress of All Maladies” by Siddhartha Mukherjee “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.” A ward nurse These “hopeless” cases had become the pariahs of oncology, unable to find any place in its rhetoric of battle and victory, and thus pushed, like useless, wounded soldiers, out of sight and mind. Cancer medicine charged on, even if it meant relinquishing sanctity, sanity, or safety.” “Th chances [of cure] in some cases are infinitesimal, but the potential is still there. This is about all that patients need to know and it is about all that patients want to know.” Ovarian cancer chemotherapist, 1979 The stories of radical mastectomy and bone marrow transplantation for solid cancers are good examples of medicine horribly over-reaching itself. “He is no physician who has not slain many patients.” Arab (?) proverb Much more to come, but that’s enough for now. I’ve been thinking the “way out” of death denial aggravated by doctors is probably through the same route as the way out of climate change and the financial crisis-- a much more modest way of living. I reviewed a book Plenitude that gave some ideas on this: http://www.bmj.com/content/342/bmj.d3998.full.pdf