In Defiance of Death: Exposing the Real costs of End-of-Life Care
by Kenneth Fisher, MD with Lindsey Rockwell, DO and Missy Scott
End-of-life care has tragically been lumped together with the bruha over "death panels." Given the dire need to reign in the rising costs Medicare, and the looming threats of rationing under the auspices of "comparative effectiveness" and cost-control via the Independent Payment Advisory Board, these concerns are understandable but misplaced. But, assuring that people have humane and appropriate end-of-life care in line with their own wishes should have nothing to do with government rationing and everything to do with good medicine.
Drs. Fisher and Rockwell along with free-lance writer Scott have written a compassionate, extensively researched appeal for rational end-of-life care. Their long over due discussion has the potential to improve the quality of medical care, while at the same time help eliminate wasting 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 is to eliminate CPR as the default action for cardiopulmonary arrest. Upon hospital admission, each patient fills out a fresh advance directive form (a good idea), and if CPR is desired, an order for its use would have to be expressly 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 irreversible error. Dr. Fisher points out that CPR-as-default was instituted when most hospital patients had acute, reversible problems. That is no longer the case. A growing proportion of hospitalized patients are admitted with debilitating chronic illnesses and aggressive treatment is frequently not beneficial. I am still not sure what to think on this issue--but it is a discussion which needs to occur.
A useful clarification in the book 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.
7. Address the issue of a shortage in nurses through expansion of 2-year hospital-based nurse training programs.
Some of the recommendations with which I differ:
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. Yet again, this is an appropriate free market activity.
These areas of disagreement in no way detract from the over all value of the book. Dr. Fisher presents much valuable information accompanied by a number of concrete practical actions we could take to address a very real and serious problem within our current health care system. This book is an excellent place to start several long over-due conversations.
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.