Downtown Presbyterian Church Forum, 1/28/2018
If physical suffering is alleviated, should the state empower physicians to determine the appropriateness of a request to end a life before its natural time? The escalating debate involves many dimensions of personhood.
This week we will confront the debate of ending one’s life before its natural time, and with help. No one wants to suffer, but does that mean some (patients) can ask others (physicians) to end their lives through “medical” intervention, and how should the request be received?
I would not support a law in New York State to protect physicians from prosecution if they prescribe medications to assist a patient with dying. An allowance for physicians to treat “suffering” through killing is wrong, even though it is “logical” for some. What I have to say may not agree with what you have concluded. We will start a conversation today about this subject. I do not have a reflection piece, but I have a reference list.
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Let me first make clear what this discussion is about, as it is easy to conflate various terminologies used at the end of life. The distinctions must be very clear. I will give a quick historical review. And I want to examine how complex even a rational decision is to request assistance in dying.
At one time we trusted that doctors would know best for patients: when to begin treatments, when not to begin treatments, when to stop treatments, etc. Why do “we” not trust “them” now in this regard? The history of misguided paternalism is one we do not want to repeat. Physicians are human, and I find it ironic that this debate (about PAD) is willing to give physicians more power to decide than before.
The recent history of medical ethics is one of not providing treatments when benefits are no longer clear. Physical existence is not the ultimate goal, and that is accepted. But there is daily struggle with what types of living are still considered meaningful. There is a broad gray zone where ethical principles can come into conflict. Who gets to say what’s best? At what cost? What is harm? At our best we work at shared decision-making. But we are not here today to discuss medical ethics.
We can limit life support. With the definition of brain death in 1968, it was formalized that there could be objective criteria to define death by certain neurologic criteria. Life support therefore could be removed. (not all cultures recognize this)
In 1976, New Jersey courts allowed Karen Ann Quinlan’s family to withdraw mechanical ventilation for their daughter with persistent vegetative state after brain injury, although she was not “brain dead.” Since then, ethics policies and clinical procedures agree that life support can be removed when they appear “futile.” The processes surrounding termination of life support involve definitions of who has the right to request (which patients, who is a surrogate, what can states require). The legal profession has helped define the parameters of evidence, and thus there are many forms devised to provide “evidence” that proper procedures are followed. That’s how we have health care proxies, MOLST forms, and the FHCDA in New York State.
Stopping life support when patients and families agree that the burdens of treatment outweigh the benefits occurs frequently in modern hospitals. In 1994 we published an article in JAMA of a one-year experience at RGH about withdrawing life support in 28 patients. As medical ICU director and as ethics committee chairman at RGH, I was involved frequently in discussions that addressed the practical examples and pitfalls of this issue. When medical ethical principles (self-determination, beneficence, non-maleficence, and justice) collide to produce ethical dilemmas, the trend has been “at the end of the day,” to allow patients or their surrogates have the final say – power lies with them. But there needs to be a good conversation.
In 1991 Tim Quill published his famous NEJM article entitled “Death and Dignity: a case of individualized decision making.” In that case a patient with terminal leukemia did not want to suffer through uncertain chemotherapy, and she asked for Dr. Quill’s help to have medications on hand to take her life when she felt the time had finally come. Dr. Quill was charged with assisting in a suicide; so he and others challenged the NYS law prohibiting physicians from assisting in such cases. His argument was that there was no essential difference between terminating life support to eliminate suffering, and providing medications to eliminate suffering. The case went to the Supreme Court, which decided in1997 that New York and other states could prohibit PAD: the Constitution’s Equal Protection clause (14th Amendment) did not apply in this case; the vote was 9-0. For the Supreme Court, withdrawing life support and assisting in suicide are essentially different matters. They share a wish to relieve suffering – but their intents are different. In one case patients die of natural causes; in the other the intent is to cause death to relieve suffering.
The palliative care movement has taken hold to provide expertise and training on adequate symptom management for patients with terminal and non-terminal illnesses. The purpose of course is to relieve physical suffering, and not abandon patients who have intractable symptoms. We must not confuse the debate about PAD with the practice of providing good symptom control. Pain control is important, but also treatment of shortness of breath, nausea, constipation, etc. It is generally agreed, though not consistently practiced, that giving really large doses of medications to relieve physical suffering is not unethical, even if such doses might cause death – the principle of double effect. There is even allowance for “terminal sedation.”
But what about patients who have symptoms controlled, but who still wish not to live lives they consider meaningless, or devoid of hope, or who have anxiety about their conditions? There are many stories of preserving the dignity, grace and empowerment of patients who have fought a good fight, and finally wished to have a peaceful death on their own terms. They claim that physicians should be protected from prosecution if they wish to help them with the medications.
Five states and DC now have laws protecting physicians in such situations. (The Supreme Court has not weighed in on whether there are any liberties that are violated by state laws allowing such assistance.) New York’s Death with Dignity Act proposes something similar, but it is still not law. The process has been called “physician-assisted dying”, “physician-assisted death”, “aid in dying”, “death with dignity”, “right to die”, “compassionate death”, “compassionate dying”, “end-of-life options”, “medical assistance at the end of life”, “voluntary active euthanasia.” An opponent has labeled it “death as treatment.”
The existing laws prescribe similar processes and safeguards to be followed: they empower physicians to prescribe medications for the purpose of ending a competent patient’s life, as long as certain criteria are met. Generally, patients must be terminally ill (expected to live 6 months or less), and be mentally competent (able to request the procedure themselves).
Summarizing the medico-legal history:
- Competent patients can refuse life-sustaining measures based on their reasoned decisions.
- Surrogates of incapacitated patients can withdraw life support, and it is not recognized legally as killing.
- Withdrawing life support and assisting in suicide are different intentions, though they seem to share a similar, compassionate intent to relieve suffering.
So now we are at a point in history when New York and other states must debate whether the State can allow some physicians under appropriate conditions to provide medications to patients to end their lives in order to relieve their suffering.
Let’s make it very clear: we are not talking about ending life support for conscious or unconscious patients, or for relieving terrible pain or shortness of breath with morphine and sedatives. We are discussing giving conscious patients prescriptions to have on hand to take their lives when they feel the conditions are right to do so.
In this discussion, I believe strongly that there are many more aspects than a conflict between the patient and the State. I believe we need to look closely at the patient, the people who care about the patient, implications of public policy, and physicians.
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First, let’s wonder what might lie within a request for assistance in suicide. Our personhood is complex.
If someone “meets criteria” (has terminal disease and has capacity to make a reasoned decision), does that end the exploration of motivation? What are hidden meanings of a request for physician-assisted dying? A wise and useful article in 1998 by a psychiatrist at Columbia elaborated on motivations within a request.
Dr. Muskin’s article suggests that skilled psychiatric evaluation should always be part of any request of granting PAD. To some this might seem like judgment or questioning or violation of patient rights. Muskin makes a point that unspoken psychological or psychiatric issues can operate beneath even “rational” requests. Having “competence” is too simplistic an approach. I have heard the phrase “abandoning patients to their self-determination,” and perhaps nowhere else is this as important an issue.
The courts have clarified the parameters of the discussion (self-determination matters), but they do not struggle with the challenges of applying principles in practice. We are complex, multi-dimensional beings with history, wishes, futures. Conscious and willful thoughts are influenced by subconscious and unconscious forces. Some of the complexities explored in his article include:
- Symptom control (particularly pain) is key. Non-abandonment by physician is important. Skilled and consistent continuity of care (palliative care?) can help. Is it available?
- A request for assistance in dying could be a plea to establish communications: a suicide patient frequently leaves a note of explanation. Is the request for medications like a pre-suicide note asking for attention and concern?
- Retaining a sense of control: in some cases, asking for medications has provided enough security so that a patient would not use them – a request not for death, but for the security of being able to control circumstances. Most requests in Oregon do not result in use of the medications.
- I think we can understand rage and revenge as motivations to suicide. Why shouldn’t it play a role in asking for assistance in suicide. “I’ll show you …” can be motivating emotion. Some of the most rageful emotions are masked by hyper-rationality.
- Patients’ suffering could have been exacerbated by mismanaged explanations of their underlying medical conditions – awkward breaking of bad news occurs with either giving too little or too much information. Is the patient realistic about her circumstances? How is he dealing with the uncertainties?
- Depression. How does this play a role, not just sadness. Too often there is an almost glib “of course a patient would feel that way.”
- “The living dead” – patients may feel “they may as well be dead” in the face of a terrible illness that will ultimately lead to death.
- Self-understanding comes through dealing with suffering. For many the time of dying and death, with adequate support, is a time for self-understanding and relationship building.
- Some may need reminding – “Don’t be dead until your time comes.”
- Guilt, self-punishment and atonement. Illness is a regressive experience. There can be transference issues, making the physician or surgeon more powerful than they are. A patient could feel they are not “good enough” and thus ask to die. And physicians also project their emotions. Patients who fail to improve can impact their physicians’ sense of power, authority and competence. What happens to relationships when these narcissistic dynamics are at play? What happens to a request for suicide in these circumstances?
Some people feel that examining motivation disrespects patient autonomy and self-determination. I feel that not discussing motivation would more likely compromise exercise of these principles. This is an area of psychiatric expertise, and it is not always found in non-psychiatrists and others.
Muskin concludes: “The request for suicide may be found to be ‘rational,’ but not until there has been an adequate exploration of its meaning.”
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The patient’s “family” and relations
The relationship between a patient and her family and close friends needs exploration and understanding. On the one hand there is a crime in suicide. On another hand the uncertainty and fears of loss create anxiety that can lead to overreaching in order to retain control. Death can be seductive.
Regarding the first pitfall: EM Forster wrote that “the crime of suicide lies … in its disregard for the feelings of those whom [they] leave behind.” The crime of assisted suicide also could lie here – in its disregard for relationships. My judgmental self in fact would suggest that physician assisted dying is most rational with a nihilistic worldview. In such a spirituality, there would be “an egocentric view of man and his needs as the measure of all values, with nothing to determine his way of living except his own needs.” (Heschel)
Such a worldview would believe there is no meaning, only experience. We would have no need for the heart, only our glands. We would have no necessary connections to Others, only responsibilities to ourselves. The virtues that Faulkner reminded us of – “courage and honor and hope and pride and compassion and pity and sacrifice” would not apply to us in such a nihilistic worldview. We might only see and remember “how desolate the landscape can be between the regions of kindness” and forget the regions of kindness that are available.
If one lives primarily for one’s individuality, I without Thou, then it “makes sense” that when the “I” determines or accepts that there are no Others who are important enough to relate to – that individual might conclude that others have an obligation to relieve his suffering.
Doesn’t that seem an asymmetric logic? I don’t care about your feelings, but you have to care about mine.
A 1997 book Seduced by Death reveals a more chilling analysis of the dynamics between patients and their loved ones. Dr. Herbert Hendin is an expert on the psychology of suicide, and “contends that terminal illness is not dissimilar to other life crises that provoke suicidality. He explores the psyches of the suicidal: their ambivalence toward death, the inflexibility of their thinking and difficulties considering alternatives, and the influence of subtle pressures from others.”
Death and dying frighten all of us. When the suffering of others resonates with fears within ourselves – there can be an overwhelming wish to control circumstances. Hendin takes to task the romanticization of an assisted death by suicide – one that was published by the NYT back then and since. Death and loss and losing control or losing certainty affect not only the patient. It affects those around her. Ambivalence is present, and the subtle pressures of loved ones and doctors not to have their suffering extended can be a dynamic that subtly but powerfully pushes unspoken agendas. It is terribly difficult to live with the uncertainty and suffering. That does not obligate use of medications to end the life.
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Regulatory and statutory level issues.
On a macro scale, I would question the premise that physicians, simply by virtue of their licensing, would have adequate knowledge and self-knowledge, skill, or attitudes to assess patients’ requests for PAD. One only has to remember that we stopped trusting physicians to act in patients’ best interests years ago. The arrogance and hubris of “knowing best” is already too pervasive to safely give this power over life and death to all physicians. “Trust me with this power, I’m a doctor; I won’t abuse it”?? Many physicians won’t participate. But even among those who want to, how do we assess their qualifications, motivations, wisdom and limitations? It is rather odd that so many people are willing to put physicians on this pedestal, while taking them down from others!
Other objections:
- Too much power in physicians’ hands to determine “appropriateness”
- Socioeconomic biases. Would this allowance be exercised similarly in minority as majority communities?
- Slippery Slope toward more active interventions – Netherlands
- Slippery Slope toward an obligation to relieve suffering when requested.
- The beginnings of the latter argument can be seen in objections raised even about a need for psychiatric assessment.
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Physician-Patient relationship
If a patient wants to take his life to relieve suffering, what is wrong with saying to him, “Go ahead and do it, but I won’t help you”? Why is a physician’s role different from another person’s?
First I question most physicians’ abilities to assess the psychiatric dimensions of a patient request for assistance in taking her life. Furthermore, few physicians have done sufficient self-examination to understand their own biases and tendencies. They are likely influenced by their own unexamined psychological, cultural, political and social blind spots. It seems difficult to expect physicians to perform “objective” assessments.
Furthermore assistance in dying is not a matter only of honoring a rights; it also carries an implied demand on another person to participate. Proponents state that PAD is an extension of the medical need to relieve suffering. This subtle shift in emphasis results in an over-extension of physician responsibilities. It is appropriate to maintain awareness of patients beyond their physical issues – awareness that the mind and body are not separate. But it is a different leap to say that what a patient wishes for should automatically be given. It doesn’t work that way in any other social relationships.
I agree fully that my skills and experience should be called on to relieve physical suffering if you are my patient. But if that is not the issue, if disturbing feelings and thoughts remain that are not physical, why should my skills and experience also be applied to relieve your metaphysical suffering?
This aspect brings us back to the awareness of dimensions of personhood. Suffering, we explained last week, is an experience of distress when patients lose a sense of integrity. When capacities are lost, and are not supported by resources in other dimensions, then suffering follows. It is sad, it is possibly even traumatic, to witness and to feel another’s suffering. Empathy can hurt. But in my opinion the response to another person’s request for killing to end their suffering, however rational, does not obligate medications – it obligates compassion and support even when we are empty-handed.
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Don’t just do something – stand there.
We have peeked into a particularly uncomfortable consequence of suffering. We all have some inkling of physical suffering, and we hope to avoid it always. Some perhaps have knowledge of psychic suffering – being alone or hopeless or damaged by past losses and traumas. Expert symptom management can relieve almost all physical suffering – but it still takes a lot of education to make that the norm in my profession.
As we tried to remember last week, there will be suffering as our physical selves, our purposeful selves, our productive selves, our playful selves, etc., might be lost through accident, illness, and aging.
With that fore-knowledge, what dimensions of personhood will be left when those are gone? We will generally have our memories even when our dreams fade. Most will have companionship – though age can take that away, too. If you are fortunate to have young relatives you are close to, their company will be long sustaining, and the impending loss will be sad. If these supports are not present, what remains that we can attach to, that is lasting and that might survive us?
Heschel said – “The true aspiration is not that the self and all that is contained in it may last, but that all the self stands for may last” (Not Alone, 205). That is what I hope to discuss next week – the possibility that what we stand for will contain enough comfort for us, enough support through the times of loneliness, hopelessness and hurt.
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REFERENCES:
Daniel Callahan. When self-determination runs amok. Hastings Center Report. March-April 1992; pp. 52-55.
Herbert Hendin. Seduced by death: doctors, patients, and assisted suicide. (WW Norton, New York, 1998). First chapter available on line:
http://www.washingtonpost.com/wp-srv/style/longterm/books/chap1/seducedbydeath.htm
David KP Lee et al. Withdrawing care: experience in a medical intensive care unit. J Am Med Assoc 1994: 271:1358-1361.
Philip Muskin. The request to die: role for a psychodynamic perspective on physician-assisted suicide. J Am Med Assoc 1998; 279:323-328.
Timothy E. Quill. Death and dignity: a case of individualized decision making. N Eng J Med 1991;324:691-694.