Monday, May 09, 2005
How the RWJF Came to Bankroll the Right-to-Die Movement: Part 3
In the last post I examined how RWJF as a vanguard of the right-to-die movement had positioned itself as speaking for the Baby Boom generation on end of life issues. This kind of group-think is typical of the Boomers (a la reporter Pauline Kael, who didn't know anyone who voted for Nixon in his landslide election of 1972) who assume whatever is impacting them locally is effecting everyone globally. I find this particularly unsettling in light of persistent reports that RWJF's end of life initiatives were sparked by personal issues within the governing members of the foundation. In this RWJF report by Joanne Lynn she refers to this:
The early 1980s were marked by concerns over the cost of health care, culminating in such reforms as the use of diagnostic-related groups in the Medicare program and by highly visible controversies over patients' rights, especially at the end of life.1 Fueled by a series of personal experiences that affected the leadership of The Robert Wood Johnson Foundation, a concern arose at the Foundation that elderly, fatally ill persons were likely to be vigorously treated in intensive care units, at great financial cost and suffering, even if their families objected. In 1985, the Foundation convened a meeting to consider these issues. After that meeting, the Foundation staff invited a few researchers, including William Knaus and me, to write a letter about what could be done to understand and improve care of critically ill persons in hospitals. This initiated three years of correspondence, meetings, and piloting that gradually shaped what became the SUPPORT project.
The report that characterized RWJF's end of life campaign from yesterday focused on compassion for patients whereas this earlier report seems to be all about the benjamins. So much so that a cynic may wonder if the "personal experiences" of the RWJF leadership didn't also involve a heavy financial burden.
Ms Lynn's frustration that the RWJF's social engineering wasn't immediately embraced is palpable:
The intervention that SUPPORT started was vigorously applied and widely desired. Patients and families certainly appreciated the time with the SUPPORT nurse. Physicians were generally accepting and encouraging. But old habits turned out to be not really that uncomfortable, and new patterns were not really that much desired. Most people in such hospital settings, involved with critically ill patients, are not convinced that they are doing anything wrong. They are coping with bad situations in time-honored ways. They are comfortable with the inadequacies of present practices, even when those inadequacies are acknowledged, and they are unsettled at the prospects of new and untested patterns.
Lynn admits later that it is difficult to determine the outcome of aggressive treatment and that in hindsight failures are seen as a waste of money. In addition to the problem of the uncertainty of outcome in treatment, there efforts were also stymied by the unpreparedness to make end of life decisions on the part of patients and their families. Here we see Ms. Lynn's outreach efforts nearly spilling over into contempt:
I appeared on a number of call-in radio shows, and someone would invariably call in to say that she had these problems all solved for herself because she had a living will. I would ask what it said, and the response would be that "treatment should stop when it becomes clear that I will die." When the caller was asked to clarify her wishes about treatment, she replied that treatment would stop when the situation was "hopeless." When I asked how hopeless the situation would have to be, or how close death had to be, the caller would predictably become testy--saying that this would be obvious.
I don't think there is a real solution to this issue, as no one can predict the outcome of therapeutic care and few of us will ever be prepared for these end of life issues either personally or in regard to family members. Instead RWJF has introduced a cheat by training doctors to instill these "non-tradition" values in medical school, and convincing people to abdicate control through living wills, advanced directives, etc. One thing worthy of note is that the words "futile" and "hopeless" recur in these reports as well as other studies they have sponsored like the oft cited SUPPORT study of 1995 (which oddly enough isn't available on the RWJF's website) as does the RWJF talking points of traditional approaches to death resulting in dying alone, in pain and hooked up to a machine. I sense this same undercurrent of hopelessness and isolation in Bill Moyer's introduction to his own RWJF-funded documentary On Our Own Terms as proudly sited in Bronner's RWJF report:
Like you, I don’t want to think about death, especially my own. But I’ve realized that death is pushing through the door we try to keep so firmly shut. Parents age before our eyes. AIDS and cancer take friends and loved ones. And baby boomers, that most powerful generation in our culture, face their own mortality even as they care for their aging parents. So, like it or not, we can’t push death back through the door. That’s one reason we did this series. The other is that there is a movement afoot driven by our hope for a better death.
Tucked away in the corner of the website for Moyer's documentary is an article on the short story by Count Leo Tolstoy, The Death of Ivan Ilych. The story conveys perfectly the isolation pain and hopelessness of one who embraced life but gave no thought to death. Once it is obvious that he is dying Ivan Ilych is abandon by all but his servant Gerasim. The point of the article seems to be that the right-to-die movement would play the role of Gerasim for a lonely frightened generation facing the ultimate uncertainty. But the secular education of the authors of the article doesn't provide the proper understanding of Tolstoy's beliefs or the cultural context of the peasant Gerasim. This servant is an Old Believer, one who seeks to provide for his family through a life of sacrifice and hard work and who typically would retire to a monastery in his final years. Gerasim's service and humility is a stark contrast to the self-seeking and pride of Ivan Ilych's world. The hope that Gerasim transmits to Ivan Ilych is very different than the one that the right-die-movement offers. The Boomers, who as Moyers points out in his quote above are already a legend in their own minds, have through the agency of the right-to-die movement developed a solution based on their understanding and a plan based on their typical response to the challenges of life. Having had a predilection for medicating themselves, they have a great fear of pain. Having torn free from the generational ties that bind, they fear dying alone. And having given up hope for eternal life, they can only hope for a better death.
The early 1980s were marked by concerns over the cost of health care, culminating in such reforms as the use of diagnostic-related groups in the Medicare program and by highly visible controversies over patients' rights, especially at the end of life.1 Fueled by a series of personal experiences that affected the leadership of The Robert Wood Johnson Foundation, a concern arose at the Foundation that elderly, fatally ill persons were likely to be vigorously treated in intensive care units, at great financial cost and suffering, even if their families objected. In 1985, the Foundation convened a meeting to consider these issues. After that meeting, the Foundation staff invited a few researchers, including William Knaus and me, to write a letter about what could be done to understand and improve care of critically ill persons in hospitals. This initiated three years of correspondence, meetings, and piloting that gradually shaped what became the SUPPORT project.
The report that characterized RWJF's end of life campaign from yesterday focused on compassion for patients whereas this earlier report seems to be all about the benjamins. So much so that a cynic may wonder if the "personal experiences" of the RWJF leadership didn't also involve a heavy financial burden.
Ms Lynn's frustration that the RWJF's social engineering wasn't immediately embraced is palpable:
The intervention that SUPPORT started was vigorously applied and widely desired. Patients and families certainly appreciated the time with the SUPPORT nurse. Physicians were generally accepting and encouraging. But old habits turned out to be not really that uncomfortable, and new patterns were not really that much desired. Most people in such hospital settings, involved with critically ill patients, are not convinced that they are doing anything wrong. They are coping with bad situations in time-honored ways. They are comfortable with the inadequacies of present practices, even when those inadequacies are acknowledged, and they are unsettled at the prospects of new and untested patterns.
Lynn admits later that it is difficult to determine the outcome of aggressive treatment and that in hindsight failures are seen as a waste of money. In addition to the problem of the uncertainty of outcome in treatment, there efforts were also stymied by the unpreparedness to make end of life decisions on the part of patients and their families. Here we see Ms. Lynn's outreach efforts nearly spilling over into contempt:
I appeared on a number of call-in radio shows, and someone would invariably call in to say that she had these problems all solved for herself because she had a living will. I would ask what it said, and the response would be that "treatment should stop when it becomes clear that I will die." When the caller was asked to clarify her wishes about treatment, she replied that treatment would stop when the situation was "hopeless." When I asked how hopeless the situation would have to be, or how close death had to be, the caller would predictably become testy--saying that this would be obvious.
I don't think there is a real solution to this issue, as no one can predict the outcome of therapeutic care and few of us will ever be prepared for these end of life issues either personally or in regard to family members. Instead RWJF has introduced a cheat by training doctors to instill these "non-tradition" values in medical school, and convincing people to abdicate control through living wills, advanced directives, etc. One thing worthy of note is that the words "futile" and "hopeless" recur in these reports as well as other studies they have sponsored like the oft cited SUPPORT study of 1995 (which oddly enough isn't available on the RWJF's website) as does the RWJF talking points of traditional approaches to death resulting in dying alone, in pain and hooked up to a machine. I sense this same undercurrent of hopelessness and isolation in Bill Moyer's introduction to his own RWJF-funded documentary On Our Own Terms as proudly sited in Bronner's RWJF report:
Like you, I don’t want to think about death, especially my own. But I’ve realized that death is pushing through the door we try to keep so firmly shut. Parents age before our eyes. AIDS and cancer take friends and loved ones. And baby boomers, that most powerful generation in our culture, face their own mortality even as they care for their aging parents. So, like it or not, we can’t push death back through the door. That’s one reason we did this series. The other is that there is a movement afoot driven by our hope for a better death.
Tucked away in the corner of the website for Moyer's documentary is an article on the short story by Count Leo Tolstoy, The Death of Ivan Ilych. The story conveys perfectly the isolation pain and hopelessness of one who embraced life but gave no thought to death. Once it is obvious that he is dying Ivan Ilych is abandon by all but his servant Gerasim. The point of the article seems to be that the right-to-die movement would play the role of Gerasim for a lonely frightened generation facing the ultimate uncertainty. But the secular education of the authors of the article doesn't provide the proper understanding of Tolstoy's beliefs or the cultural context of the peasant Gerasim. This servant is an Old Believer, one who seeks to provide for his family through a life of sacrifice and hard work and who typically would retire to a monastery in his final years. Gerasim's service and humility is a stark contrast to the self-seeking and pride of Ivan Ilych's world. The hope that Gerasim transmits to Ivan Ilych is very different than the one that the right-die-movement offers. The Boomers, who as Moyers points out in his quote above are already a legend in their own minds, have through the agency of the right-to-die movement developed a solution based on their understanding and a plan based on their typical response to the challenges of life. Having had a predilection for medicating themselves, they have a great fear of pain. Having torn free from the generational ties that bind, they fear dying alone. And having given up hope for eternal life, they can only hope for a better death.
papijoe 8:04 AM
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