Attending to the pain of the dying: an agenda for science

Abstract

pneumonia, because my parents had signed papers inadvance, asking that their lives not be extended by hero-ic measures once they had crossed an irreversible thresh-old of pain or dementia.My mother survived him, and in her last months, andeven in her last days, she gave me and my family ampleevidence of the difference between dying and being dead.She became stronger as she became weaker, becameincreasingly generous and wise with me and my rela-tives, and with a host of new and old friends, in ways thatshe could not while she was more fully alive. This stun-ning emergence of a kinder and wiser person from thedying body of my mother came to a halt only in her lastfew days, when the pain of her tumor began to requiresuch high doses of morphine that she was unable to speakwith any lucidity. Even then, she clearly accepted herdeath, said goodbye, and, with the help of hospice care athome, died peacefully.Hospice care is still controversial at many major med-ical centers today, for its goal is not to provide goodtreatment for the dying but to provide a good death. Attheir best, hospices excel at delivering what they prom-ise: control over pain, dignity to the end, and the assur-ance that no one need spend their last moments alone.The current hospital response of science to the dyingreflects my own attitudes during those decades I workedin my lab. It goes something like this: “You have had themisfortune to be born too soon to benefit from science’sever deeper comprehension of nature. That is too bad, butsince we can know how everything works, certainly oneday we will know how to keep a death like yours fromhappening. Until then, you will understand if we do notspend much time on the relatively uninteresting matter ofhow it is to die.”The medical treatment of the dying is almost invisibletoday, an embarrassing situation that can only get worseas the rest of medical science succeeds in allowing agreater fraction of the population to live into old age withsufficient residual mental and physical capacity to under-stand their situation. For the sake of these lucky people -may we all be among them - medical science is obligatednow to begin a research effort focused on making dyingitself as brief, and as healthy, as possible. This is no joke:the hospice movement - not a product of scientific medi-cine but a reaction to it - has shown that a dying accom-panied by a minimum of pain and a maximum of socialinteraction is healthier and better by far than the typicaldying of today, accompanied as it so often is by pro-longed agony and isolation.For most of my life, and for all of my thirty years asan experimental scientist, I scrupulously avoided my ownpersonal and professional responsibility to attend to thedying. It is not that I had no chances to make the connec-tion between science and dying; I simply chose not totake them. In my own confusion, I lost sight of the funda-mental truth that dying is as distant from death as anyother stage in life is. The deaths of my parents bracketed the period inwhich I came to see how a failure to acknowledge deathproperly distorts the practice of medical science. Myfather died of a respiratory infection acquired in the hos-pital a decade after he had lost his senses to Alzheimer’sdisease. During his last years I did not see him at all, andI did not understand that he was dying, for I already imag-ined him as dead. He lived for many years in a home forthe demented, his body kept alive by strangers becausehis family — myself included — could not carry the bur-den of caring for him after he ceased to know who we —or anyone else — were. He was allowed to die at last, of