Medical futility and the responsibility of physicians...and patients

Ethics is a difficult area. Medical decision making is a difficult area. Both are fraught with ambiguities, conflicting priorities, differing values. Priorities shift with time, as our moral compass tacks back and forth, seeking to compensate for current problems and deficiencies, and sometimes overreaching, require new future shifts in direction. We will probably never get it exactly right, but need to keep working in the right direction.

Barron Lerner makes an excellent start in his NY Times  Op-Ed from September 18, 2014,”When Medicine is Futile”.  He talks about his father, who was a physician leader in “The medical futility movement, which argued that doctors should be able to withhold interventions that they believed would merely prolong the dying process...”. The father was an infectious disease specialist, whose early career was marked by the miracle of penicillin and drugs to treat tuberculosis. However, later his practice, as that of most infectious disease physicians in the US, was being called to consult on infections occurring in hospitalized patients who were otherwise severely ill, often in intensive care units, with terminal diseases and frequently advanced dementia, “…connected to machines and tubes he knew would not help them.”

The younger Dr. Lerner, author of this piece and a professor of medicine at a major medical school, notes that his father “..placed some of the blame for the situation at the feet of bioethics and patients’ rights, two movements that I, as a young physician, had fiercely advocated,” which put them in conflict. And yet, from a longer perspective, he can see a great deal of his father’s concerns. As he point out, the patient’s rights movement and to a lesser extent bioethics

…did not account for one thing: Patients often demanded interventions that had little or no chance of succeeding. And physicians, with ethicists and lawyers looking over their shoulders, and, at times, with substantial money to be made, provided them.

The stimulus for this article is a recent report by the Institute of Medicine (IOM) of the National Academy of Sciences, “Dying in America,” “…that argues that we subject dying patients to too many treatments, denying them a peaceful death.” This report begins the process of reconciling the physician’s responsibility to at least provide accurate information on treatments and the likelihood of their success with the autonomy of patients to make their own decisions about the treatment that they want. This is a welcome effort at reconciliation of these two apparently or potentially conflicted ethical principles, especially given, as Dr. Lerner points out, that “Physicians declaring things to be ‘futile’ sounded too much like the old system of medical paternalism, in which doctors had made life-and-death decisions for patients by themselves.” But any meaningful discussion of this  requires consideration of four powerful issues that always impact upon it.

First, there is trust. Can patients and their families trust the doctors to be advising them in their best interests? This is particularly true for many disenfranchised people who are not like the majority of doctors in background, ethnicity, and certainly income. For the poor and members of minority groups that have in fact in the past been victims of outrageous abuses, there may remain a suspicion of any effort to suggest that further interventions would be futile. People may think “you are only saying this because I (or my family member) is …” and would recommend intervention for a member of your own family, or someone more like you.

Second is the issue touched on above about the “likelihood of success”. Success at what? For patients and/or their families to make intelligent decisions, the parameters of success, or similar words like “help”, “improve”, “make better”, need to be clearly defined in words and concepts that lay people can understand and that physicians are willing to use. I have written in the past about a woman whose daughter worked with me who was dying in the intensive care unit (ICU) of the hospital I worked at. I came to visit and met her 5 children trying to decide whether to approve the use of an intervention in their unconscious, uncomprehending, and terminally ill mother that they were told “would help”. As I was not the treating physician, I went to the ICU doctor and inquired, on their behalf, what the intervention was and how it was expected that it might help. I then cautiously returned to the family to feel them out regarding their understanding of “help”. They thought it meant it would make her “better”. What, I asked, did “better” mean to them? When they appeared confused, I went further, asking if it meant that she would wake up, be able to talk to them, be able to go home, perhaps be able to say goodbye? Yes, they said, that is what it meant to them. I tried to gently say that this would not happen, that this intervention would, perhaps, correct a laboratory value, but would not have any of the outcomes they hoped for. They opted to not have it.

These are not easy discussions, and lead to the third issue. Most people do not have the training and background to understand the ramifications of the decisions that they are asked to make under the rubric of “patient autonomy”. I feel that I am knowledgeable about many areas, particularly medical ones, but it would be ridiculous to ask me how a bridge should be built. You wouldn’t want to drive over it, and I wouldn’t either. Simply citing “patient autonomy” and presenting incomprehensible data and decisions about whether to do something that even the words for make no sense to a regular person is not ethical; it is equivalent to abandonment. Sometimes a doctor or nurse or other health professional with patience can spend the time and effort necessary to help a patient or their family really understand what is going on, what likely outcomes of any intervention or –equally validly – non-interventions might be, so that they can make an informed decision based upon that information and on their own values and priorities. Most of the time the healthcare providers are too busy, and do not have the time and may not have the inclination, and are not paid well, or at all, for that time.

Which leads to the final issue, money. In a quote from Dr. Lerner above regarding procedures that will not be effective, I include “the substantial money to be made from them”. The money to be made by providing them is a profoundly important issue, potentially corrupting any discussion of ethic versus futility. Dr. Lerner notes that the IOM report “…advocates that Medicare and other insurers pay physicians to talk to their patients about end-of-life care”. This is a great idea, but it doesn’t currently happen often, and even the proposal that physicians do it (not to mention be paid for it) was grossly misrepresented as “death panels” when included in the Affordable Care Act (ACA). Even if this time is paid for, it would never approach the amount of money that would come from doing the procedure, or certainly not the money a busy surgeon, for example, might make from operating on someone else.

All people know, intellectually, that everyone dies. What may be harder for many to accept is that they must die, particularly when their time comes. It may be even harder for family members, who are not the actual patient, to accept, and to demand that “everything” be done. For Dr. Barron the elder, as described by his son, “Infections were the way that such frail individuals were supposed to die, the ‘final straw’ in the deterioration of so many of the body’s vital organs and functions.” Yet somehow they had become things that needed to be treated.” 

Everyone dies; what we can only hope for is a death unaccompanied by pain and unpleasantness. Infections like pneumonia which should be treated in an otherwise healthy person in whom a return to health is likely probably should not be in a person who is terminally ill, bed bound, demented. They are nature’s exit door. The same could be said for starvation, a relatively benign way to go, and almost always better than the alternatives of feeding tubes or intravenous nutrition, which carry high risks of complications of aspiration and infection and discomfort.

There must be a real understanding that patient autonomy does not include the right to demand any treatment. We would not assume a person could request a Corvette or a lifetime pension, and yet the latter would probably do more to improve health than any medical intervention, and the former would cost less than many.

Dealing with and overcoming the barriers presented by the first three issues will be difficult but can be done. To really do so means eliminating the fourth issue, the perverse economic conflict of interest that can cloud judgment, decrease trust, and pollute the entire process.

Suicide in doctors and others: remembering and preventing it if we can

Recently, SASS-MoKan, our local suicide survivors’ support group, held its annual Remembrance Walk. I have written about these in the past, and have included the fact that my personal interest in the issue of suicide is the fact that my older son, Matt, committed suicide in 2002, just after he turned 24. At the time, everything seemed to be going fine in his life, and it came as a real surprise to his family, his close friends, everyone.

The Remembrance Walk is a lovely ceremony. Following a lap around a good-sized park, there is a ceremony. All the survivors stand on the grass in a circle, and the names of all those they have lost are read; at the end, a flight of doves is released. It is caring, and it is supportive. Of course, the ceremony also brings out the pain and sadness of our losses.

Matt died nearly 12 years ago, but I know others who have lost children very recently. I can tell them that the acute agonizing pain that feels as if it will never ease does, but they cannot and should not believe. It becomes less acute, less sharp, less all-consuming every minute, but it never goes away.

Recently, an Op-Ed in the New York Times by Pranay Sinha discussed “Why do doctors commit suicide?”. Because I am a doctor, and one who many of my colleagues know had a suicide in my family, several people shared this with me, although I’d already seen it. The article provides the perhaps shocking information that the suicide rate among physicians is twice the national average. Beyond this, however, it focuses on residents, doctors in training, and the enormous stresses that they are under, not further discussing the reasons why doctors in general have such high suicide rates. This is not surprising, as Dr. Sinha himself is a first-year resident (at Yale) and is obviously acutely aware of the stresses and strains of residents.

I know that this is true; I was a resident (a long time ago, in the last millennium) and I work every day with residents. It is a hard job; although these people will become, in a few years, full-fledged physicians who will range from very well-paid to extremely well-paid, they are, as residents, working for about the US average wage, but up to 80 hours a week, often with life and death in their hands. That this is fewer hours than residents used to work is good, but is of limited comfort to them. The point is that the residency is a big stress, and it occurs at an age when many people, especially males, are already at risk. The important issues that are addressed in this piece, and in several of the letters written in response to it, are the idea that doctors are supposed to be all-knowing, infallible, unwilling to admit mistakes or weakness. The op-ed and the letters make clear how obviously unreasonable and burdensome that this is, for all doctors and possibly even more for these young doctors who are even more aware, inside, of what they don’t know and are terrified of showing it.

This is National Suicide Prevention Month, which is why the remembrance walk is in September, and why there are such articles appearing. NPR recently ran a program on the increase in the number of suicides in middle-aged men has increased by 50% since 1999; older men have always had the highest suicide rate, followed by adolescents and young men, but this increase in men aged 45-65 is new. Some suggestion is that it is the economic downturn, which hit poor people well before the “official” recession; it is lower-income men who had the highest rates in this age group. Robin Williams’ recent suicide was widely covered; I doubt that National Suicide Prevention Month entered into his decision. Interestingly to me, many of the commentators focused on the “how surprising, he was so funny, he made us laugh, who would have guessed” angle, while others have discussed how he, like many comedians, needed the public attention but was lost when alone. I suspect Williams was bipolar; certainly many of his activities have suggested an ongoing depression while his outer persona was so often manic.

What many of the articles, including the Op-Ed, do not discuss, however, is the fact that most suicides in the US are caused by depression, a disease. It may be unipolar (“just” depression) or bipolar (“manic depression”), but it is potentially fatal.  The stresses of being a doctor, or being a resident, are tremendous and cause people who are depressed to go “over the edge” and commit suicide, but it is important to remember that most people undergoing the same stresses do not. The underlying condition usually needs to be present for the precipitating cause to be fatal. I have previously cited what I consider to be one of the best discussions of this issue, “The trap of meaning: a public health tragedy” by CG Lyketsos and MS Chisolm in JAMA.[1]

National Suicide Prevention Month, and the activities associated with it, are critically important for raising awareness about a condition that kills 40,000 Americans a year, but is often kept secret, through shame. When I became a member of the club no one wants to be in, what are called suicide survivors (although the meaning is family and friends of someone who has completed suicide, rather than those who have personally survived a suicide attempt), I found out lots of people I knew were also members. They had parents, children, siblings, close friends who had committed suicide, but I didn’t know. We often don’t talk about our pain, but the sadness of losing a child seems to many to be more ok to talk about if it was a medical disease, or car accident, or homicide, than if it was suicide. But the loss is the loss; the pain is the pain.

I don’t have the optimism that some do about being able to prevent suicide in specific cases. I do believe that early diagnosis and treatment helps; I believe that being aware of the warning signs is important, and I will never know how many times having those who loved him around might have prevented my son from killing himself before he finally did. I can only hope that more awareness and discussion about this condition will make a difference for some, and perhaps many.

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[1] Lyketsos CG, Chisolm MS .The trap of meaning: a public health tragedy. JAMA. 2009 Jul 22;302(4):432-3. doi: 10.1001/jama.2009.1059.

Ebola, risk, and the public's health

My friend Allen Perkins received a text from his college-student daughter asking if she should be worried about the Ebola virus. His reply, discussed in “Ebola virus and the dread factor” in his excellent blog, “Training Family Doctors” was “Are you considering moving to west Africa?” This was wise and profound fatherly advice, based upon an understanding of the epidemiology of disease. While is it obviously a serious problem in West Africa (particularly Liberia, Sierra Leone, and Guinea), it is not in the United States. Many other things are much more of a threat in the US, including, as Allen points out, “death from bee stings” (100 per year in the US).

Ebola might someday become a significant problem in the US, but it is unlikely and is not now. Many other health problems are. College students like Allen’s daughter should be sure that they have all their recommended immunizations for diseases that can be prevented by vaccine, including HPV and meningococcus, a very serious and often deadly cause of meningitis that can become epidemic where young people live together in close quarters, like college dormitories (and army bases). Yet, many do not receive these immunizations for reasons that range from passively not getting it done (less of a problem in schools where it is required) to having beliefs, or having parents who have beliefs, that vaccines are dangerous and should be avoided (in some cases this can trump school requirements). They are, by the way, wrong. The net benefit far outstrips the risk. Having your child get meningococcal meningitis and die or have serious brain damage, or get cervical cancer, is not something you want.

But focusing on conditions over which we have little or no control, rather than the ones we do, is fairly epidemic in this country (and likely others). Dr. Perkins focuses on the “dread factor”, about how news reports (not to mention thriller movies) whip up fear about these diseases. On the other hand, mostly what we can do is fear them, while the diseases which we individually might be able to have an impact on would require us to have to maybe do something hard: change our diet, start exercising, stop smoking, not drink so much or at the wrong times. I have written in the past about a patient who had a terror of breast cancer, a disease for which she was not at an increased risk based both on her youth and lack of family history. On the other hand, she did not seem particularly worried about the health risks of her uncontrolled high blood pressure, smoking two packs of cigarettes a day, or having unprotected sex with several different men.

Most of us can see that this is not logical, and maybe even snicker a little about her poor decision making. But it is only a little extreme. Many, perhaps most, of us, could do a better job of eating right, of exercising, of not smoking or drinking excessively (which for many people is “at all”). If not Allen’s daughter, many of her classmates are at much greater risk from going out and getting drunk on a weekend night, increasing their risk of motor vehicle accidents, sexual assault, poor judgment in choosing voluntary sexual encounters, and long term habituation for those with a predilection for or family history of alcoholism, just for starters. But taking action to prevent such bad outcomes is hard, requires effort, and often means not doing things we like in the short term, such as eating tasty-but-unhealthful foods, drinking with friends, smoking when we are addicted to nicotine, driving when we (or the driver) is only a “little drunk”, or having to do unpleasant exercise. Or it can conflict with our self-image: wearing a bicycle or motorcycle helmet, eschewing doing things that our friends are doing. Worrying about things that we can do nothing about, like breast cancer or Ebola, may be a little irrational, but it is in some way comforting because if the bad thing happens we are an innocent victim.

In addition, there are actions a society can take, that could make even more of a difference from a public health, population health, point of view, saving more lives, but these require political will. Sadly, this is often more lacking than individual will. Guns are the prime example; many state legislatures and legislators make it a point of personal pride to advocate for there being no restrictions at all on what kind of guns (e.g., automatic weapons) and ammunition (e.g., armor piercing bullets) people can have or where they can carry them (everywhere, open or concealed). Helmets and alcohol regulation are other areas where opportunity for prevention is often missed. Car safety has been increased by car and highway redesign and tobacco has been increasingly regulated (against the opposition of the industry, it should be noted, in both cases) for the benefit of public health, but many opportunities remain.

Indeed, expanding health coverage to all those below 133% of poverty by Medicaid expansion continues to be opposed by those who want to be seen as against Obamacare. This may be irrational from a public health point of view, but in many states it is rational, if offensive, for being re-elected. The most unjust and inequitable part of it all is how the effects of poor public health policies most affect the most vulnerable, poorest, least empowered people in our society, or indeed any society. Public health education campaigns tend to focus on diseases that have well-funded advocacy groups and affect the majority population; a recent qualitative study of African-American women found that they were very aware of the threat of breast cancer, but hardly at all of stroke – a disease statistically more likely to affect them.

Speaking of public health, it is gratifying to see some newspaper coverage of Ebola that is not sensationalist or scary. “U.S. Colleges See Little Risk From Ebola, but Depend on Students to Speak Up”, by Richard Pérez-Peña in the NY Times, August 30, 2014, addresses the small but real risk that may affect colleges from students who have (unlike Allen’s daughter) actually traveled to West Africa. Even better is “Leadership and Calm Are Urged in Ebola Outbreak” by Donald G. McNeil, Jr., which presents a rational, thoughtful, public health approach, and discusses public health strategies which have been used in the past in major crises and are beginning to be implemented in West Africa. These strategies center around the use of local, respected experts who can effectively communicate with the people in their countries, rather than international aid agencies. The goal is to help people to utilize appropriate prevention and protection measures rather than panic. Again, as in the case of the other personal behaviors described above, this can be hard for people, especially when it contradicts cultural and religious values (such as how the dead are buried). But having voices who are local, who understand the culture, and have both medical/public health credentials and individual credibility, is extremely important. Of course, unlike the Ebola “scare” articles, these were both on page 8 of the newspaper, but have a more prominent position on that day’s Times homepage.

So what are the lessons? Understanding risk is not always easy, especially when an epidemic with a hugely high mortality rate threatens.  Doing something is harder than not doing anything, and it can thus be tempting to worry more about the things that we can’t do anything about rather than those we could reasonably take action on. The same is true for public health issues that need to be addressed at a societal level.

And, of course, it is always the most vulnerable who suffer the most.