Goodbye to the old; hello to the new

Dear Readers -

Shortly after I started this blog my friend Dan Callahan, President Emeritus of the Hastings Center, suggested that we develop it under the wing of the Center. This was a very appealing idea. The Hastings Center is a recognized and highly respected "brand" in the world of ethics and health policy. While the Center is small, the staff has far more technical skill and media knowledge than I do. Dan, Shep Nuland (Professor of Surgery Emeritus at Yale), Mary Crowley (Director of Communications at the Hastings Center), and I worked together for a few months to develop the concept, gather a group of supporters for the venture, and solve a few technical glitches.

We launched the new blog - Over65 - in August. I encourage anyone who gets to this site to visit. I thought "Seniors for Medicare Reform" was a great idea when I started in in January. "Over65" is a way better idea. I'm excited to be working on it.

This will be the last post on "Seniors for Medicare Reform."

Best to all

Jim

Doctors Die Differently

Many years ago, my late father received a recommendation for carotid artery surgery. He had no symptoms, but his physician was concerned about kinking and possible narrowing of the artery. I described the situation to a vascular surgeon colleague. He thought the recommendation was questionable. I encouraged my father to talk further with his physician about the procedure In their discussion the physician said - "I'm a worrier - I would do this for myself. But now that I hear more about your values, I don't think you should do it."

This exchange should have occurred before the recommendation was made. But the physician was commendably self aware and honest. (The artery never caused problems. My father died years later, at 89, of other causes.)

 When I was in clinical practice, patients sometimes asked me what I would do if I were in their situation. I thought this was a reasonable question. Interest in how our physicians care for themselves is more than idle curiosity. Their choices don't establish "truth." But knowing how they handle their own care and the values they bring to bear on their choices is useful "data" for our own reflection.

In a recent Wall Street Journal article - "Why Doctors Die Differently" - Dr. Ken Murray, a retired Assistant Professor of Family Medicine at the University of Southern California, tells how a physician mentor and a cousin both chose "low tech" end of life care for themselves. Dr. Murray cites a study of elderly graduates from Johns Hopkins Medical School that supports his anecdotes - a large majority would refuse a range of life-sustaining treatments. Here's how Dr. Murray puts it:

It's not something that we like to talk about, but doctors die, too. What's unusual about them is not how much treatment they get compared with most Americans, but how little. They know exactly what is going to happen, they know the choices, and they generally have access to any sort of medical care that they could want. But they tend to go serenely and gently.

Doctors don't want to die any more than anyone else does. But they usually have talked about the limits of modern medicine with their families. They want to make sure that, when the time comes, no heroic measures are taken. During their last moments, they know, for instance, that they don't want someone breaking their ribs by performing cardiopulmonary resuscitation (which is what happens when CPR is done right).

Dr. Murray speculates that when patients ask their physicians how they would handle their own end of life care, we physicians are reluctant to answer. Though I haven't seen any research on the issue, his guess could well be right. End of life care involves the most personal choices we make, and physicians may hesitate to (a) reveal their own values and (b) exert too much influence.

But good medical care requires conversations of this kind. All too often overly intrusive end of life care happens by default. As a symptom of our pathological political culture, a proposal to reimburse primary care physicians for discussing our values for end of life care with us elicited (a) an accusation of "government death panels" from duplicitous politicians and (b) a mini-epidemic of public paranoia.

Why ICDs Shouldn't Always be Replaced

The implantable cardioverter-defibrillator (ICD) can save lives by recognizing a life threatening heart arrhythmia and immediately shocking the heart back to a normal rhythm. More than 100,000 are implanted each year.

ICD batteries last an average of five years. Here's how the Mayo Clinic talks about battery life:

The lithium battery in your implantable cardioverter-defibrillator can last up to seven years. During your regular checkups, which should occur every three to six months, your doctor or nurse will check the battery. When the battery is nearly out of power, your old shock generator is replaced with a new one during a minor outpatient procedure.

Notice how the final sentence suggests that replacement will automatically be done. There's no reference to the patient's preferences. The implication is that once an ICD is implanted, it will be with us until we die.

An article in the January 26 New England Journal of Medicine - "Time for a Change - A New Approach to ICD Replacement" challenges that assumption. Health status and life circumstances may have changed since implantation such that sudden death from an arrhythmia now looks like a blessing, not a curse.  Or our experience with the ICD may make us not want to replace it.

The authors describe how in our all-too-often fragmented system of care no one physician is responsible for helping the patient decide whether the battery should be replaced. The care system goes onto automatic pilot. As the Mayo Clinic says - the "old shock generator is replaced with a new one during a minor outpatient procedure."

The authors' recommendations are so obviously sensible it's surprising they aren't routine:

1. A comprehensive medical evaluation should be done before ICD replacement.
2. There should be clear and full communication among the entire medical team.
3. The patient's preferences, past experience with the ICD, and advance care planning, should be explicitly included in decision making.
4. Replacement should only be done if the patient wants it to be done!

I haven't been part of decision-making about an ICD, but I have observed how medicine can go onto automatic pilot. At the end of my first stepmother's life (my father was a three-time widower) she was suffering from terrible shortness of breath. She was put onto a ventilator for comfort. Over a day or two the coma she was in from cancer that had spread to the brain deepened. The ventilator, which initially had relieved suffering, was now prolonging the dying process. I pointed this out to her children (my step-sibs) and they authorized withdrawal of the ventilator, allowing their mother to die peacefully, unattached to any machines.

Not automatically replacing ICDs will save money, but it's not death panel rationing. Ascertaining what our true wishes are and following them is the right way to practice medicine!

Should We Accept Kidney Donation from our Children?

I've been looking into the phenomenon of organ donation from children to parents. Since I believe our national approach to Medicare injures future generations on behalf of us in the over 65 cohort, I wanted to see how we're dealing with the most tangible form of intergenerational transfer - organ donation.

Here's what the Handbook of Kidney Transplantation has to say about donation from children to parents:

Parents often are reluctant to turn to their children as potential donors, yet as those parents age, it becomes less and less likely that a donor from their own generation will be available. It is useful to point out to parents that their grown children are adults who are capable of making independent decisions; that the welfare of the donor will be protected in the evaluation and donation period; and that, if they exclude their children as donors, they may be preventing them from enjoying the psychological gain of helping a beloved parent. Older patients will often insist that they would have been prepared to donate to their own parents while simultaneously expressing reluctance to permit their own children to donate to them.

To my eye, the author evinces an unseemly rush to persuade us that it's right to cannibalize our children's bodies. He treats reluctance to accept kidney donation as an irrational stance. And with regard to the donor, he minimizes concern for physical and psychological risk, and envisions only "psychological gain [from] helping a beloved parent."

By way of contrast, Sharon Kaufman, professor of anthropology at UCSF, has written a wonderfully thoughtful article based on interviews with kidney recipients over 65 and their donors - Aging bodies and kinship matters: The ethical field of kidney transplant. She demonstrates that attitudes range from what I would call "entitlement" (in effect, "I have a right to your kidney so that I can go on living") to a view that transfer of body parts from child to parent is wrong (in effect, "if you need a kidney I should give it to you, but absolutely not the other way around").

Here's a vignette from a patient who ultimately accepted a child-to-parent donation:

The children talked me into it. I said, I’m not taking my daughter’s kidney! But other family members persuaded me. You know, I kind of went along with my older daughter’s insistence, and we didn’t say too much one way or another, whether I wanted to or not. But I was hopeful that I could get a cadaver—right up to the night I was hospitalized. My point was, I didn’t want to take an organ from my child. If it were the other way around, I would have gladly given my kidney to one of them, but because it was coming as a hand-me-up sort of thing, I thought about it a lot. It didn’t feel like it was the right thing to do. Help should go the other way, from parent to child. I, really, there were periods of time I just really didn’t want to do it. There was no real point in time where I decided I wanted to have it done. I just went along with the flow. I was going along for the ride because things were being arranged for me.

The clinical and ethical issues will vary from family to family. Parental age matters. A 50 year old still raising children who dies from kidney disease is "abandoning" dependents and missing out on half of adult life. An 80 year old has lived a full life span. I don't know how others would assess the ethics of taking a child or grandchild's kidney at that age. In my view it would represent monstrous narcissism.

The fact that the 2010 Handbook of Kidney Transplantation discusses child-to-parent transplantation as if the only moral issue was clearing away impediments to going ahead suggests the degree to which the technological imperative to do what is technically possible to do has gone onto automatic pilot. Organ donation from a child to a parent demands careful medical, psychological and ethical attention. It deserves better than the superficialities the Handbook offers.

Don't Let Medicare Undermine the Health of Future Generations!

Zeke Emanuel, who is becoming the national educator-in-chief about health care in his new role at the University of Pennsylvania, preaches an excellent sermon in today's New York Times - "What We Give Up for Health Care."

Zeke's point is obvious, but, amazingly, it's one our political process has been oblivious to: what we spend on health care we can't spend for other purposes. That creates an ethical imperative to consider opportunity costs for health care expenditures. The proper question is - "does this health care expenditure create more human benefit than other possible expenditures?" - rather than the one we typically ask - "does this health care expenditure produce any benefit for the patient, no matter how small the benefit or how high the cost?" Zeke shows how health care costs have acted as an economic cancer, invading and obliterating investments we would otherwise make in wages (which have been stagnant or declining), education, and other crucial components of our lives.

As important as medical care can be, income and education are also crucial determinants of health. When we reduce wages to pay for health insurance, and reduce educational investments at every level to pay for Medicare and Medicaid, we're reducing overall health and well-being. The real "death panel" is our reflexive investment in medical interventions that produce minimal or no benefit at the cost of investments that would do more for us!

Zeke argues that "liberals" should be as concerned about health care costs as "conservatives" are:

There is an inevitable trade-off between rising health care costs and things liberals really care about, like access to college and good wages for working Americans. We cannot have it all. The health care reform act will help us save — mainly by changing how physicians and hospitals are paid and delivering better care to our most expensive patients. But more can be done: for starters, we could speed up the implementation of payment reform, stop Medicare payments for tests and treatments that provide no benefit and endorse competitive bidding for medical goods and services.

The premise of this blog is that many of us in the Medicare age group - whether we're "liberal" or "conservative" - share a concern about the future, and don't want current Medicare expenditures to undermine the health and well-being of future generations.

Avoiding overtreatment, and the moral imperative to consider opportunity costs, should be our relentless advocacy focus!

Changing End-of-life Care

When I told my colleague, dear friend, and mentor, Gordon Moore, about this new blog, he showed me the draft of a proposal he had written for Medicare reform. Gordon and I have worked together and exchanged ideas regularly for more than 30 years, so it's not surprising that we agree that we in the Medicare generation are key for reforming the program and reducing its costs. He gave me permission to print what he'd written and to tweak it for length:

To my fellow Medicare recipients, 

I am a retired general practicitioner, now on Medicare.  Like many of you, I am feeling guilty and at the same time defensive about the claim that Medicare expenditures threaten the economic well-being of America.   Defensive because I feel I have earned the right to have good medical insurance as I get older.   But guilty because I know that the growth rate of Medicare does, indeed, threaten the future of our children and grand children.

As I watch the partisan fighting in Congress, I have become increasingly dubious that our government will be able to solve the problem of Medicare costs.  Both sides have staked out positions that block compromise. We are in a stalemate that threatens the nation’s future.

I have concluded that only we Medicare recipients are capable of stepping up to the plate and resolving this dilemma.   I am reminded of Pogo’s famous comment that ‘we have met the enemy and he is us.’

So how could we solve this problem? One answer is that we individually volunteer to remove Medicare expenditures that are wasteful. The greatest waste is in end-of life care.  We spend almost 30% of the Medicare budget on care that ends with death in a year or less.  As a doctor, I saw time and again the relative futility of aggressive medical care in the last months of life.  Not only did I know that such care was vanishingly unlikely to prolong life by any meaningful length, but I also watched the quality of life plummet as aggressive medical care led to hospitalization, loss of function, and prolonged pain and suffering. 

I promised myself that, like Elizabeth Edwards, at a certain point when my doctor calculated that the odds of meaningful survival were low, I would choose to be at home with my family, to receive hospice services for comfort only, and die in dignity. 

How would we know that the time had come to make such a choice?  As a primary care physician, I almost always knew the odds that intensive care would no longer help.  And yet I was relatively ineffective in helping many of my patients accept that conclusion.  Part of the problem is that most doctors find it hard to accept that there is nothing more that they can do to produce a cure.  And for most patients and families, insurance makes care seem “free,” so why not do “everything”?

But we are discovering that this care isn’t free.  It’s just that we are asking our children and grandchildren to pay for our expenditures by reducing the prospects for their own lives.  I’m very uncomfortable with the idea that our end of life care is hurting the generations that follow us, especially “care” that is associated with a miserable quality of life and maximum distraction when our real need is to be comfortable and at peace to come to our own terms about dying.   

So I have been thinking about whether we could start a campaign to reduce the expenses of our own end of life care.  If most or all of us committed ourselves to ask our doctors to inform us when the odds of recovery or significant prolongation of quality of life had dropped below a specific figure (like 1 in 5 or 1 in 10) and if we further committed to asking that all but supportive comfort care be stopped, we could make a significant dent in Medicare’s risking costs.  

But this prospect makes me confront a major barrier to my own participation - that the savings would disappear into relieving our sovereign debt.  That would feel like paying taxes - at best it's a duty, at worst it's taking the money from my sacrifice and using it for many things with which I disagree. 

 As I thought about this, I came to the conclusion that were I to relinquish my ‘right’ to unlimited expenditure at the end of life, I would want it put to a good purpose that would be sufficiently specific to make me proud and others grateful.  

My proposal is that we earmark these savings to make the generations that follow healthy and productive, to make it possible for them to achieve the quality of life that my generation has been able to enjoy.  

To do this I propose that we form a National Health Fund to which our individual contribution, calculated actuarially, be made when we forgo high cost/low yield end of life “care.” This fund would be used in the best way we know to assure healthy productive young people capable of contributing to our common good – to combine public health, education and personal care in initiatives to address the major behavioral factors that lead to illness and disability – obesity, lack of exercise, violence, and smoking.  There is little we could do in personal medical care that would deliver as much improvement in the health of our nation.

We Medicare recipients are capable of improving care and reducing costs.  We can be the generation that says ‘it’s not all about me.’ We can lead the way to a new level of civil discourse about the future of America.  Our parents did this for us with their sacrifices during the Great War; isn’t this crisis the war that we can fight to make this country better for our children?

I want to (a) thank Gordon for letting me publish his vision of Medicare reform and (b) invite other readers to send me their best ideas!

Is Death Optional?

An old joke spoofs the way we in the U.S. think about death:

In India, death is seen as a potential step away from reincarnation and towards blissful Nirvana. In Europe, death is seen as an existential tragedy we must face. In the U.S., death is seen as optional!

Last summer, Daniel Callahan, author of "Taming the Beloved Beast: How Medical Technology Costs are Destroying our Health Care System," and Sherwin Nuland, author of "How We Die: Reflections on Life's Final Chapter," (both have written many other books as well) took on the American myth of eternal youth in the New Republic. They argued that "the war against death as the highest priority should give way to a new goal: aiming to bring everyone’s life expectancy up to an average age of 80 years (already being approached), reducing early death, and shifting the emphasis in the direction of improving the quality of life of those in every age group. The highest priority should be given to children, the next highest to those in their adult years (the age group responsible for managing society), and the lowest to those over 80."


This is the kind of discussion we need to have in the U.S. in place of the vacuous tit-for-tat between Republicans and Democrats over who loves Medicare the best and who is out to destroy it. Medicare is an amazing achievement for a society in which many, perhaps a majority, agree with President Reagan that "government is not the solution to our problems; government is the problem." Medicare is cherished by its beneficiaries and by the generation concerned about care for their parents. Medicare's popularity is so deep that it's been known as the "third rail" of American politics since the Clinton presidency. Touch it and you're dead!

Callahan and Nuland could argue for giving priority to children and younger adults because they're both over 80. The ordinarily lethal accusation of being "granny bashers" is hard to pin on grandparents themselves. I'd guess that in a forced choice, a majority of Medicare recipients would agree with Callahan and Nuland's perspective.

Medicare costs must be brought into line with general inflation. But we won't make progress until our political leaders develop more backbone, and that won't happen until they hear from us Medicare constituents ourselves. I think the right starting point for that advocacy process is for those of us in the Medicare age group to demand that Medicare focus more on interventions that promote quality of life and less on costly hi-tech interventions that may forestall death by prolonging deterioration and suffering.

As Callahan and Nuland noted in their article, this will require a heightened political and medical awareness among Medicare recipients, and will engender economic losses for those who currently profit from the way health care is provided. Overtreatment is always bad medicine, but it can be economically rewarding for those who provide it inflict it.

In a followup to the New Republic article cited above, the July 3 New York Times featured a letter on the topic from Dan Callahan along with several responses. Among the responders, Doris Fenig wrote "We are a very strong lobby. We have a very loud voice. Let’s use it...for 'common civic sense.'"

Doris got it right! Her letter was one of the prods for me to start this blog.

[This post is a tweaked version of a post I wrote on my healthcareorganizationalethics blog shortly after the Callahan/Nuland article appeared.]