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.