COMMENTARY

Physician-Assisted Dying: Is a Patient's Despair Reversible?

Arthur L. Caplan, PhD; Maurie Markman, MD

Disclosures

April 06, 2017

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Arthur L. Caplan, PhD: I want to welcome Maurie Markman, who is a physician; president of medicine and science at the Cancer Treatment Centers of America; and clinical professor of medicine at Drexel University's College of Medicine in Philadelphia, Pennsylvania (my old stomping ground for many, many years). Welcome. Thank you for joining us.

Maurie Markman, MD: I am glad to be here.

Dr Caplan: Let us get right in to this tough, tough area. What would you say is the most important reason to worry about physician-assisted dying? What concerns you right now?

Dr Markman: This is rather straightforward. Let me just make it clear, though, that everything I am talking about is my opinion. I am only speaking for myself.

My concern is that the reason someone may ask for death, which is their right, is because of despair. Despair may be potentially temporary or it may be permanent, but death itself is permanent. My concern would be that some part of an individual patient's despair may be reversible; I would want to be certain that it is not reversible before deciding that this makes sense for that person, from my perspective. Again, it is always a patient's right to decide what to do, but my role as a physician would be to make sure there is not something reversible that would potentially lead the patient to a change of viewpoint.

Dr Caplan: Just to emphasize, it is the reversibility of the patient's psychological state.

Dr Markman: That is correct. Let me give you an example from the cancer domain. A patient may have been taking a tremendous amount of pain medications, and the medications are not working. The patient says nothing is working, and I accept that. However, there actually could be a single anatomical lesion that has not been appreciated and has not been approached with a nerve block, or a radiologic or surgical intervention that may be able to relieve that pain. If the pain was then relieved, that could change the patient's approach to their despair and the desire to end their life.

Dr Caplan: What do you say to some of the advocates of physician-assisted dying about making the means available to these patients? What do you say to the patient who says, I understand you can manipulate this, manipulate that, but I am dying and I do not want to go through all that. I would rather be in control of how I die. I know that you can do this, or sedate me, or block that, but I do not want to go through all that.

Dr Markman: This is their right; it is as simple as that. Again, as a physician, my role is to be an advisor—no more than that. If someone were to say that to me, I would accept it. I would ask, did you consider this; did you consider that? I am not a psychologist or a psychiatrist. And it is not for me to decide right or wrong. As a physician, I can voice an opinion. I can advise. I can even go to a family member if there is some element that does not make sense to me.

Again, on the basis of objective data, if you gave me an example of a patient who wants to be in control—someone with a potentially curable cancer, for example—then there may be a concern that we are not getting through. My role in that case is not to tell the patient that he or she is wrong. My role may be to ask whether there is another way of approaching this that somehow the patient is not hearing. If the answer is that this is their decision, then it is their decision.

Dr Caplan: Do you believe some of these highly publicized assisted dying events are shaping or influencing what you hear from patients and what your colleagues tell you about requests? I am thinking of Brittany Maynard out in California; her story was all over the media as she decided to go to Oregon to finally end her life because California had not legalized assisted dying.

Dr Markman: That is a very important example, because it follows directly on what I just said. I don't know Brittany Maynard or her doctors. I have read some of the things she has written, which clearly address my concerns that she may have been dealing with despair and could change her mind later. She clearly was not despairing. She made it very clear this was a conscious decision that she had thought through carefully.

She very openly discussed the therapy she had received. In fact, she went through all standard therapies. She underwent surgery for a malignant brain tumor; she had radiation. At some point, she said to herself (and obviously her advisor or family), this is a decision I want to make. What would I say when that kind of thought goes into this decision, both objectively looking at the medical evidence for what can be done and considering the personal ramifications?

Dr Caplan: Is she a good example of how to think it through?

Dr Markman: Yes. To my mind, she was a poster child for thinking it through. I would be concerned for others. Obviously, I don't know her. She and her family went through incredible discussions, as she describes them, to come to the decision she made. I would suggest that is the personal requirement to make those kinds of decisions. Not my requirement. But that kind of deliberation is really important.

Dr Caplan: I remember when Jack Kevorkian was bringing people to Michigan and helping them die in the back of Volkswagen vans and so on. One problem I had was that he did not know these people.

Dr Markman: That's right.

Dr Caplan: They would show up, and 24 hours later, they would be gone to the hereafter; some of them were terminally ill, and some were not, as a matter of fact. Given the constraints that physicians face in terms of time and other activities they have to engage in—paperwork and so on—can they get to know patients well enough to have reliable discussions about the authenticity of their wishes to die?

Dr Markman: That is a concern. Physicians don't have enough time to do a lot of things. The kind of conversation we are talking about would involve a lot of time and effort. I would suggest that physicians would want to be able to spend that time with their patients, but it does not mean they have that time. Quite frankly, it may be relatively immediate time. A patient comes in at a particular point and says, I'm thinking of doing this and I'm thinking of doing it now, and the doctor has a full schedule. The physician would want to take that time, would want to bring in the family, but it is difficult with time constraints.

Dr Caplan: You have been working in the cancer area for a long time. Have patients asked you about ending their lives?

Dr Markman: I have certainly had that happen. The cancer arena is a bit different than perhaps other areas of medicine where this may occur, such as severe dementia. Often, our patients with cancer have pain as a serious problem, and they may be taking many pain medications. By having that access and adjusting the pain medications themselves, they often make their own decisions. I am not saying that happens often, but these patients are in a lot of pain and could decide to take more medication tonight or tomorrow or the next day, and do it on their own. They do not necessarily have to involve their physicians directly, whereas in other areas of medicine where pain medications would not be part of usual care, patients would not necessarily have access. They would have to ask for the means; they could not do it on their own.

My response when a patient asks is that my obligation to you is to treat your symptoms, whatever they may be. I do not tell you what to do or not do. If you need more pain medication, I will give you whatever you need. I would leave it at that.

Dr Caplan: You would make pain management the priority.

Dr Markman: Whatever you need.

Dr Caplan: Even if it risks bringing about the death earlier?

Dr Markman: Right. Let me make this very clear: The patient decides. My responsibility is to the patient, and my responsibility is to relieve the patient's suffering. If I believe that something is amiss in terms of what the patient is asking because it does not make clinical sense, I will do everything in my power to try to have them think a little differently or talk with family members. I have had that experience when I believe the patient is not listening to what I am saying.

For example, if I tell them that we actually have effective treatment and I know it causes terrible nausea—if the patient decides not to go through with that treatment, I accept that. But in a situation when I think I am not getting through to the patient, would I go to a family member? Sure I would. But I do not make that decision. They do. I would have no problem giving them what they need. My intention in that is to relieve suffering, not to say they are taking this to end their lives.

Dr Caplan: You feel you have to give them their choices, including referring them to a physician who would support this decision if you disagreed.

Dr Markman: Absolutely. I believe I have an obligation to inform patients of the facts. The pain example is not rare. Despair can be horrible. Pain can be unbearable, and people can want to die because the pain is not relieved. I would want to make sure that all available medical options have been offered to that patient to potentially relieve the suffering so that the despair behind that decision may be relieved. In patients with cancer, the pain brings that potential for despair. I am not suggesting that is universal by any means. But that would be my concern.

Dr Caplan: Let me take you down another path as we move toward the end of our conversation on this. Here is a source of growing despair: These treatments are causing me to go broke. I cannot afford a $100,000 biologic or immunotherapy, or I simply do not want to linger on and on while my grandson's tuition is spent, or whatever. We have come to think about this as the problem of financial toxicity: more tools, but more associated cost. How does physician-assisted dying fit into this emerging area of financial burden?

Dr Markman: To my mind, the topic you have just brought up is the looming giant in the room, and we as a society have to consider it. I would strongly suggest that those in the US government consider this as they deliberate how we change the entire structure of healthcare, and certainly new drugs and treatments. This is not just telling pharmaceutical companies that they have to charge less. We are talking about changing the whole structure, patent law, the costs of developing drugs, and so forth.

The potential for bankruptcy is becoming a major issue among patients with cancer. We know that during the Great Depression, people went bankrupt and committed suicide. Why could it not happen now, when we are talking about therapies that cost hundreds of thousands of dollars a year and patients have copays of 20%? Financial toxicity is real.

Dr Caplan: Thank you for sharing your thoughts on a very tough, interesting, and emotionally charged issue. I think we made some progress. Thank you very much for your insights.

Dr Markman: My pleasure. Thank you.

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