- Email: [email protected]
Death at the bottom
Perspectives
1960s and early 1970s, the disease was declared to be the same, no matter what the age of onset, thus changing the medical perception of old-age dementias. In the USA, this process was solidified in 1974 with the establishment of the National Institute on Aging (NIA). Robert Butler, the first director of the NIA, told me a decade ago that the institute needed a disease to organise itself around. On selecting Alzheimer’s, he and other researchers and advocates effectively launched the modern movement that has made it one of the most talked about diseases of our time. 30 years later there is still no cure. The recent death of former US President Ronald Reagan, and his widow’s advocacy for embryonic stem-cell research, has called attention to the disease’s devastation and to the elusiveness of effective treatment. But even if a cure is possible, it is probably decades away. Meanwhile, countless individuals and
families must cope with the day-to-day reality of the disease. And this is where these books can help us see Alzheimer’s as a form of embodied personhood, in which carers can help preserve identities and seek what may be fragile remnants of a patient’s self— what Jaber Gubrium called the “social preservation of mind”. This effort is an important counterbalance to the almost single-minded, albeit worthy, effort to find a cure. It reminds us that a disease attribution is not neutral; it can place the patient firmly in the camp of the “other” and can isolate him or her from social relationships that offer opportunities to exercise remaining capacities, which are an important source of self-valuing. Loving care will not eliminate patients’ pain and suffering, but can go a long way towards lightening burdens and maybe even eliciting a smile. These two very different books—fully half of Ray Smith’s book is about his own early life and his
career as a mobile purveyor of art— remind us that moments of dignity can happen when we not only accept what the person has become, but also continue to include them in the human family. Few families will have the resources for a place like Silverado or the quasi-vagabond, adventuresome life of Ray Smith, but families—with adequate help—and institutions—with well trained staff—can offer life-enhancing care even when they can’t prevent or mitigate brain pathology. But neither families nor institutions can do it alone. The burden falls on the state and each of us as taxpayers to decide that it is worth investing more in the care of people like Grace and the residents of places like Silverado so that the less privileged can also have a chance to be “alive with Alzheimer’s”.
Martha B Holstein [email protected]
In brief Book Death at the bottom
Dancing with Broken Bones: Portraits of Death and Dying Among Inner-City Poor David Wendell Moller. Oxford University Press, 2004. Pp 184. $29·95. ISBN 0-19-516526-8.
Bioethics Mediation: A Guide to Shaping Shared Solutions Nancy N Dubler, Carol B Liebman. United Hospital Fund, 2004. Pp 236. $39·95. ISBN 1-88127-770-4.
656
A life in poverty. True poverty, as in homelessness. Death. The enemy of medicine. Both are taboo in our youthful, possession-oriented culture. In your private, reflective moments have you ever wondered how you’d face either? Truthfully, we all have. And, more truthful, when you’re faced with the advanced colon cancer patient you saw on hospital rounds or the dishevelled, alcohol-reeking man who locked your eyes on the street, aren’t you grateful it’s not you? Sitting in your comfortable office or home reading this, it’s almost incomprehensible to imagine facing such hopelessness, and even worse, to rely on society’s good will for survival. In Dancing with Broken Bones, David Moller takes us to the often forgotten, the impoverished facing death. His book is replete with situations clinicians will have experienced only from the vantage of the highly educated and financially secure—who at the end of the day escape to a safe haven. Moller allows us to experience the other side as he follows disenfranchised patients through their
final journey. He uncovers system failures, social inequities, and utter neglect of people ostracised in life and at death. The survivor-like characteristic of many of the patients leaves the reader humbled in the face of the human instinct that is not diminished by poverty and neglect. Likewise, the many caregivers who selflessly deny themselves greater financial reward for their services. Read this book. It will remind you why you became a health-care provider.
Honey East, C Andrew Brown [email protected]
Book The art of negotiation
risks of harm to the patient, alienation of a family, and potential litigation. In this “how-to” guide, Nancy Dubler and Carol Liebman describe the aims of bioethics mediation, outline steps necessary for successful interventions, analyse several cases, and provide role plays to practise. The section describing the elements of mediation is especially helpful for its logistical detail and tips on obtaining and presenting information. But aspiring mediators should note that the psychological and communication skills called for are of the highest level, and don’t necessarily accompany particular roles in the medical establishment. In short, this book tells us that effective negotiation is as much a matter of process as content, requiring strong interpersonal skills and emotional intelligence. As such, it ought to be required reading for bioethics consultants and members of ethics committees; indeed, most health-care providers and administrators would find it helpful.
Bioethics has long focused on bedside dilemmas—seemingly intractable conflicts between patients, families, and doctors whose values and goals differ. While such clashes provide endless grist for philosophers, those in the trenches find them interpersonally and professionally challenging. Decisions often have to be made quickly, despite medical uncertainty, and a choice that Mary Terrell White neglects one party’s values carries grave [email protected]
www.thelancet.com Vol 364 August 21, 2004
1960s and early 1970s, the disease was declared to be the same, no matter what the age of onset, thus changing the medical perception of old-age dementias. In the USA, this process was solidified in 1974 with the establishment of the National Institute on Aging (NIA). Robert Butler, the first director of the NIA, told me a decade ago that the institute needed a disease to organise itself around. On selecting Alzheimer’s, he and other researchers and advocates effectively launched the modern movement that has made it one of the most talked about diseases of our time. 30 years later there is still no cure. The recent death of former US President Ronald Reagan, and his widow’s advocacy for embryonic stem-cell research, has called attention to the disease’s devastation and to the elusiveness of effective treatment. But even if a cure is possible, it is probably decades away. Meanwhile, countless individuals and
families must cope with the day-to-day reality of the disease. And this is where these books can help us see Alzheimer’s as a form of embodied personhood, in which carers can help preserve identities and seek what may be fragile remnants of a patient’s self— what Jaber Gubrium called the “social preservation of mind”. This effort is an important counterbalance to the almost single-minded, albeit worthy, effort to find a cure. It reminds us that a disease attribution is not neutral; it can place the patient firmly in the camp of the “other” and can isolate him or her from social relationships that offer opportunities to exercise remaining capacities, which are an important source of self-valuing. Loving care will not eliminate patients’ pain and suffering, but can go a long way towards lightening burdens and maybe even eliciting a smile. These two very different books—fully half of Ray Smith’s book is about his own early life and his
career as a mobile purveyor of art— remind us that moments of dignity can happen when we not only accept what the person has become, but also continue to include them in the human family. Few families will have the resources for a place like Silverado or the quasi-vagabond, adventuresome life of Ray Smith, but families—with adequate help—and institutions—with well trained staff—can offer life-enhancing care even when they can’t prevent or mitigate brain pathology. But neither families nor institutions can do it alone. The burden falls on the state and each of us as taxpayers to decide that it is worth investing more in the care of people like Grace and the residents of places like Silverado so that the less privileged can also have a chance to be “alive with Alzheimer’s”.
Martha B Holstein [email protected]
In brief Book Death at the bottom
Dancing with Broken Bones: Portraits of Death and Dying Among Inner-City Poor David Wendell Moller. Oxford University Press, 2004. Pp 184. $29·95. ISBN 0-19-516526-8.
Bioethics Mediation: A Guide to Shaping Shared Solutions Nancy N Dubler, Carol B Liebman. United Hospital Fund, 2004. Pp 236. $39·95. ISBN 1-88127-770-4.
656
A life in poverty. True poverty, as in homelessness. Death. The enemy of medicine. Both are taboo in our youthful, possession-oriented culture. In your private, reflective moments have you ever wondered how you’d face either? Truthfully, we all have. And, more truthful, when you’re faced with the advanced colon cancer patient you saw on hospital rounds or the dishevelled, alcohol-reeking man who locked your eyes on the street, aren’t you grateful it’s not you? Sitting in your comfortable office or home reading this, it’s almost incomprehensible to imagine facing such hopelessness, and even worse, to rely on society’s good will for survival. In Dancing with Broken Bones, David Moller takes us to the often forgotten, the impoverished facing death. His book is replete with situations clinicians will have experienced only from the vantage of the highly educated and financially secure—who at the end of the day escape to a safe haven. Moller allows us to experience the other side as he follows disenfranchised patients through their
final journey. He uncovers system failures, social inequities, and utter neglect of people ostracised in life and at death. The survivor-like characteristic of many of the patients leaves the reader humbled in the face of the human instinct that is not diminished by poverty and neglect. Likewise, the many caregivers who selflessly deny themselves greater financial reward for their services. Read this book. It will remind you why you became a health-care provider.
Honey East, C Andrew Brown [email protected]
Book The art of negotiation
risks of harm to the patient, alienation of a family, and potential litigation. In this “how-to” guide, Nancy Dubler and Carol Liebman describe the aims of bioethics mediation, outline steps necessary for successful interventions, analyse several cases, and provide role plays to practise. The section describing the elements of mediation is especially helpful for its logistical detail and tips on obtaining and presenting information. But aspiring mediators should note that the psychological and communication skills called for are of the highest level, and don’t necessarily accompany particular roles in the medical establishment. In short, this book tells us that effective negotiation is as much a matter of process as content, requiring strong interpersonal skills and emotional intelligence. As such, it ought to be required reading for bioethics consultants and members of ethics committees; indeed, most health-care providers and administrators would find it helpful.
Bioethics has long focused on bedside dilemmas—seemingly intractable conflicts between patients, families, and doctors whose values and goals differ. While such clashes provide endless grist for philosophers, those in the trenches find them interpersonally and professionally challenging. Decisions often have to be made quickly, despite medical uncertainty, and a choice that Mary Terrell White neglects one party’s values carries grave [email protected]
www.thelancet.com Vol 364 August 21, 2004