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In Defiance of Death: Exposing the Real Costs of End-of-Life Care
Death is a natural part of life. But it has become a painful, protracted, humiliating process that is often inappropriate for the healthcare patient, puts an undue financial and emotional burden on the family, and provides a model of improper care for physicians in training. And it's expensive―about 22 percent of all medical expenditures are for people in the last year of their lives. Further, while studies show that 90 percent of all people would prefer to die at home surrounded by family and friends, the reality is that more than 70 percent die in institutions. As Dr. Ken Fisher argues so passionately in this book, it's time for a change.
End-of-life care in the U.S. has evolved over the years into a nightmare for patients and family members, and it has created a near-crushing financial burden on the medical system that is not just excessive but unsustainable. It has driven the cost of healthcare out of reach for many people, and it is a large factor in preventing the creation of universal coverage. In Defiance of Death reviews the current state of end-of-life care and highlights its many problems from a variety of economic, political, and social perspectives. Fisher and Rockwell illuminate the ethical dilemmas we all face as technology allows us to prolong life―but at a huge human and financial cost. This book documents these problems and provides a historical perspective of how our medical system evolved. It argues that America's defiance of death is far too costly and recommend that all stakeholders―including the public, medical community, Congress, and business leaders―join together to create a system that improves end-of-life care for everyone involved. This book, with workable solutions to improve our medical system, helps point the way.
End-of-life care in the U.S. has evolved over the years into a nightmare for patients and family members, and it has created a near-crushing financial burden on the medical system that is not just excessive but unsustainable. It has driven the cost of healthcare out of reach for many people, and it is a large factor in preventing the creation of universal coverage. In Defiance of Death reviews the current state of end-of-life care and highlights its many problems from a variety of economic, political, and social perspectives. Fisher and Rockwell illuminate the ethical dilemmas we all face as technology allows us to prolong life―but at a huge human and financial cost. This book documents these problems and provides a historical perspective of how our medical system evolved. It argues that America's defiance of death is far too costly and recommend that all stakeholders―including the public, medical community, Congress, and business leaders―join together to create a system that improves end-of-life care for everyone involved. This book, with workable solutions to improve our medical system, helps point the way.
240 pages, Hardcover
First published March 30, 2008
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June 3, 2011
I came across this book because of an email introduction to the author, Dr. Kenneth Fisher, who has just volunteered to head up the efforts to start a Michigan chapter of Docs 4 Patient Care. I am very interested in end-of-life issues and last year spent almost 60 CME (continuing medical education) hours studying hospice/palliative care. At the time, I was considering starting back into active medical practice in that field. Since then, I have become side-tracked by the more immediate task of defending our health care freedom via D4PC and The Black Ribbon Project.
Back to the book.
Dr. Fisher has written a compassionate, extensively researched appeal for rational end-of-life care which will improve the quality of medical care, while at the same time help eliminate the wasting of our wealth on futile treatments.
We spend a very large proportion of our health care dollars at the end of our lives. The reasons for this are multiple, but include an inadequate legal definition of death, the shifting of decision-making away from medicine and into the legal realm, lack of adequate communication between patient and medical care-takers about end-of-life wishes and realities--aggravated in part by the Patient Self-Determination Act, unrealistic expectations of what medical science can accomplish, and the divorcing of medical decisions from economic considerations.
Dr. Fisher offers some very intriguing solutions which are worth further discussion.
Death should be defined not as "absence of all brain activity" but the absence of cerebral cortex functioning. This would clarify the futility of continuing to keep bodies alive when the person who once inhabited them no longer exists.
Hospitals could form Appropriate Care Committees to assist families and physicians provide the best possible care for individual patients. We must actually apply what we already know about which interventions are futile in which contexts, and when further treatment is merely prolonging suffering and death. Where I part ways with Dr. Fisher is his recommendation that these committees extend into a government-managed hierarchy. I can see them as a selling point for hospitals ("We provide only the best, appropriate care.") but it frightens me to think of the government making those determinations.
Another idea of Dr. Fisher's will require more thought on my part is to eliminate CPR as the default action for cardiopulmonary arrest. Upon hospital admission, each patient would fill out a fresh advance directive form (a good idea), and if CPR is desired, an order for its use would have to be written. The danger, of course, is that the order for CPR could be absent due to oversight rather than as a true reflection of the patient's wishes--and potentially lead to an error which cannot be reversed. Dr. Fisher points out that CPR-as-default was instituted when most hospital patients had acute, reversible problems. That's no longer the case. A growing proportion of hospitalized patients are admitted with debilitating chronic illnesses and aggressive treatment is frequently not beneficial. As I said, I am still not sure what to think on this issue--but it is a discussion which needs to occur.
One very useful clarification by Dr. Fisher is the differentiation between the absolute right of individuals to refuse any and all treatment and the non-existence of a right to demand treatment that is not medically indicated. The tricky part is who gets to define what is "medically indicated." Dr. Fisher recommends only limiting treatments which are not controversial (such as attmepting to keep an anencephalic infant alive via mechanical ventilation.) These non-controversially futile actions are where there is no right to demand treatment.
Dr. Fisher also calls for more training of medical personal in end-of-life matters and palliative care. The goal is to do our best to assure patients do not pointlessly suffer by receiving futile treatments, and families do not deplete life savings for inappropriate care. I heartily agree that a deeper understanding of this aspect of medicine is sorely needed.
In summary, I support the following improvements recommended by the author:
1. Implement a mechanism to keep advance directives fresh and timely.
2. Develop Appropriate Care Committees for hospitals and long-term care facilities.
3. Alter medical education to emphasize continuity of care.
4. Increase training in palliative care/end-of-life
5. Redefine death to loss of cerebral cortex functioning.
6. Consider changing CPR away from being the default action.
Suggestions he makes that I do not agree with:
1. Making the Appropriate Care Committees a government function.
2. Create a central agency to mandate uniform insurance billing (with the rationale that it will decrease administrative costs.)This is properly a market function.
3. Government support of primary care over specialists, or vice versa. Again, the balance of primary care to specialists needs to be a market discovery by free individuals choosing what is of value for themselves.
4. Legally restricting or eliminating the direct advertising of drugs and medical devices. Again, this is an appropriate free market activity.
In the end, the way for us to assure the most cost-effective use of resources is by doing what is best for the patient in his or her entire context: medically, psychologically and economically. This can not be achieved in the collectivized, centrally controlled system of a medical commons where treatment decisions are divorced from economic consequences. As physicians, we can do a better job by understanding and then communicating the limits of beneficial treatment. As a society, we need to return personal responsibly and a respect for property rights, which means accepting the consequences of living in a world of limited resources and limited life.
There is a time to defy death, but in the end, no one gets out of here alive. And nothing in life, not even death, is free.
Back to the book.
Dr. Fisher has written a compassionate, extensively researched appeal for rational end-of-life care which will improve the quality of medical care, while at the same time help eliminate the wasting of our wealth on futile treatments.
We spend a very large proportion of our health care dollars at the end of our lives. The reasons for this are multiple, but include an inadequate legal definition of death, the shifting of decision-making away from medicine and into the legal realm, lack of adequate communication between patient and medical care-takers about end-of-life wishes and realities--aggravated in part by the Patient Self-Determination Act, unrealistic expectations of what medical science can accomplish, and the divorcing of medical decisions from economic considerations.
Dr. Fisher offers some very intriguing solutions which are worth further discussion.
Death should be defined not as "absence of all brain activity" but the absence of cerebral cortex functioning. This would clarify the futility of continuing to keep bodies alive when the person who once inhabited them no longer exists.
Hospitals could form Appropriate Care Committees to assist families and physicians provide the best possible care for individual patients. We must actually apply what we already know about which interventions are futile in which contexts, and when further treatment is merely prolonging suffering and death. Where I part ways with Dr. Fisher is his recommendation that these committees extend into a government-managed hierarchy. I can see them as a selling point for hospitals ("We provide only the best, appropriate care.") but it frightens me to think of the government making those determinations.
Another idea of Dr. Fisher's will require more thought on my part is to eliminate CPR as the default action for cardiopulmonary arrest. Upon hospital admission, each patient would fill out a fresh advance directive form (a good idea), and if CPR is desired, an order for its use would have to be written. The danger, of course, is that the order for CPR could be absent due to oversight rather than as a true reflection of the patient's wishes--and potentially lead to an error which cannot be reversed. Dr. Fisher points out that CPR-as-default was instituted when most hospital patients had acute, reversible problems. That's no longer the case. A growing proportion of hospitalized patients are admitted with debilitating chronic illnesses and aggressive treatment is frequently not beneficial. As I said, I am still not sure what to think on this issue--but it is a discussion which needs to occur.
One very useful clarification by Dr. Fisher is the differentiation between the absolute right of individuals to refuse any and all treatment and the non-existence of a right to demand treatment that is not medically indicated. The tricky part is who gets to define what is "medically indicated." Dr. Fisher recommends only limiting treatments which are not controversial (such as attmepting to keep an anencephalic infant alive via mechanical ventilation.) These non-controversially futile actions are where there is no right to demand treatment.
Dr. Fisher also calls for more training of medical personal in end-of-life matters and palliative care. The goal is to do our best to assure patients do not pointlessly suffer by receiving futile treatments, and families do not deplete life savings for inappropriate care. I heartily agree that a deeper understanding of this aspect of medicine is sorely needed.
In summary, I support the following improvements recommended by the author:
1. Implement a mechanism to keep advance directives fresh and timely.
2. Develop Appropriate Care Committees for hospitals and long-term care facilities.
3. Alter medical education to emphasize continuity of care.
4. Increase training in palliative care/end-of-life
5. Redefine death to loss of cerebral cortex functioning.
6. Consider changing CPR away from being the default action.
Suggestions he makes that I do not agree with:
1. Making the Appropriate Care Committees a government function.
2. Create a central agency to mandate uniform insurance billing (with the rationale that it will decrease administrative costs.)This is properly a market function.
3. Government support of primary care over specialists, or vice versa. Again, the balance of primary care to specialists needs to be a market discovery by free individuals choosing what is of value for themselves.
4. Legally restricting or eliminating the direct advertising of drugs and medical devices. Again, this is an appropriate free market activity.
In the end, the way for us to assure the most cost-effective use of resources is by doing what is best for the patient in his or her entire context: medically, psychologically and economically. This can not be achieved in the collectivized, centrally controlled system of a medical commons where treatment decisions are divorced from economic consequences. As physicians, we can do a better job by understanding and then communicating the limits of beneficial treatment. As a society, we need to return personal responsibly and a respect for property rights, which means accepting the consequences of living in a world of limited resources and limited life.
There is a time to defy death, but in the end, no one gets out of here alive. And nothing in life, not even death, is free.
September 7, 2019
Considering this book was first published in 2008, the content is accurately predictive of modern challenges to end-of-life care. It is disheartening to know the medical system has seen minimal progress in this area. The content is well-rounded and comprehensive but delivered in brief, which prevents it from feeling exhaustive. End-of-life care is examined from several perspectives including ethics, evidence-based best practices, and cost effectiveness. Fisher also presents several well thought out resolutions to each identified challenge. This book is due for a resurgence.
Displaying 1 - 2 of 2 reviews