Medical Aid in Dying: Bioethical and Public-Policy Perspectives

Sheldon Berkowitz: Our next speaker is Dr. Don Postema. Dr. Postema has a PhD in philosophy and is currently the Program Director of Medical Bioethics for HealthPartners, and is also the ethicist-in-residence at Gillette Children’s Hospital in St. Paul. He, too, has a wonderfully long biography that you can find on our web page. Dr. Postema and I have known each other for over 30 years from our work on bioethics issues in the Twin Cities. He has recently been involved with discussions at both Health Partners and Gillette Children’s around the ethical issues raised by the current End-of-life Option Act, and we look forward to learning from him.

Dr. Don Postema: Just so you know, I’m associated with all these organizations, including Center for Bioethics at the University as well as HealthPartners and so forth. But as I say, these are my views, not theirs, and they’re very happy to have me tell you that.

Now, what is ethics? This is how I define it, broadly speaking. So what Rabbi Dorff is doing is ethics, but I’m also doing ethics, outside of a particular religious tradition – “the critical reflection on moral values and practices, in order to do the right thing and promote good, sustain community, and live a flourishing life.”

So it’s a rather comprehensive description of ethics, but it’s a critical reflection. It’s not just having a moral position but it’s critically reflecting on what it is to live in community and to live a good life, to do the right thing, and live together well. That’s my definition.

What I do as an ethicist, as someone in the clinical setting but also in the classroom setting – when I’m asked to speak or talk about a particular issue – is laid out here.

And we try to get concepts clear to make sure we’re talking about the right thing. Rabbi Dorff has already distinguished medical aid in dying from what I will call euthanasia, for example. We make sure that we have accurate and adequate facts. Facts are important whenever it comes to coming up with ethical positions. I try to frame, then, the questions, the issues, using ethical theories, and usually come up with a recommendation when I’m doing ethics. So you should or should not continue the feeding tube program; you should or should not continue dialysis, or go off of ventilators. 

And so we make recommendations, and then I am quick to add the next morning I always ask myself “Could I have been wrong?” Could I have been wrong? So that this is a constant process of review and reflection, it seems to me. I’m only going to do conceptual clarification and framing using ethical theories this morning. So – “phew, okay he’s not going to do all that.”

First, in terms of conceptual clarification, my definition of “medical aid in dying” is that it’s a social practice. A “social practice” is a term that you may not be familiar with, but social practice is any routinized, usually law-governed way of doing something. When we drove here this morning, we engaged in the social practice of driving on the highway. And you drive on the right, not on the left, and you observe speed limits because it’s a social practice that has now been regulated by the community for the good of the community. 

So MAID is a social practice, within which a patient with decision-making capacity – we use a language of “being decisional” – who is expected to die within the next six months – that’s called a “diagnosis of a terminal condition.” That person may choose to hinder life by self-administering (no other person will administer) the lethal agent, a drug prescribed and provided by medical professionals. And “medical professionals” includes physicians, but also advanced-practice professionals. 

And you see we’ve used these terms before, and for the same reasons that Rabbi Dorff indicated, I will talk about MAID and not about physician-assisted suicide. MAID is not euthanasia. Euthanasia where is where a patient asks for assistance in dying, but someone else administers the death-inducing drug. We’re not talking about euthanasia, so keep the e-word off, okay.

So if you look at the bill that our Representative, as a matter of fact, sponsored – and this is the description from the Minnesota legislative research office – and you find that it embodies what I just defined medical aid in dying. So it maps onto it and I think we’re talking about the same thing. So that’s good.

The Secular Ethics of MAID

The second set of distinctions I need to make, and I’m trying to make this as quick as possible, is to distinguish law from ethics. I’m not a legal scholar, I’m not doing legal theory, but law and philosophy are very closely related. And I think we need to know how they’re related, because we’re talking about, here in Minnesota, a piece of legislation, but we’re also doing an ethical analysis of it. They are not the same sort of thing. Both law and ethics involve critical reflective thinking, rigorous reasoning and appropriate compassion. I add that for both philosophers’ and lawyers’ sake – appropriate compassion. It’s not just all head stuff. 

We have distinct ends – so philosophy, if you know the Latin philosophia, means “love of wisdom.” The law, on the other hand, is to sustain a just society based upon certain principles, precedence and  experience. So we have different ends or goals.

Ethics should inform law and critique laws and legal systems, and provide that critical perspective. So again, there are laws which may not be ethical, and the point is to attempt to change them so they conform to the best ethical understandings. And social practices are always sanctioned and regulated by the law, where, as a matter of fact, our practices affect all of us. 

So the question is: should MAID be legal? Well, let’s look at the ethics of it in order to consider whether or not it should be legal. This is where you get into ethical theory, and I’ll try to make this quick. It usually takes me about a week to do this in class, but if I can do it shorter, a lot of students I’ve had will be really pissed – sorry, that’s a colloquial term, it’s also a medical term, so maybe I can get away with it.

Consequentialism and Other Ethical Theories

So, consequentialism is one of the ethical theories, and it simply says, “the rightness or wrongness of an action or practice depends upon the outcomes,” the consequences. So if I consider, let’s say, lying to my daughter when she was young and she was worried about the house burning down at night because of an electrical malfunction – and I say, “That will never happen, Bri,” was it a lie? Well, you know,  there’s some possibility. But the end which is making sure she’s feeling secure and protected justifies the shading of the truth. How’s that? 

So the outcomes determine the rightness or wrongness of the action – it’s consequentialist ethics. And in some parts of our lives we’re all consequentialists, usually when it happens it has to do with managing our budgets, because we want to produce the best outcome for the use of those scarce resources.

 Rights and duty-based ethical theories are our second theory, and that says there are certain rights. Rabbi Dorff, again, talked about certain rights in the tradition here in the United States, but there are rights we have as persons, and we have duties to others because of that as well, like the duty to tell the truth. 

And then finally, a virtue ethic is one that focuses on professions – focuses on what it is to be a good person achieving or struggling to achieve the end of the profession. So physicians are professionals. They, as a matter of fact, aim to develop certain character traits and be consistent, compassionate and competent, and so forth.

Three ethical theories. So if we apply these ethical theories to the question of MAID… So we’re going to ask these questions. I’m just going to give you questions, we can talk about them later. Will MAID increase well-being and or decrease pain and suffering for the greatest number in our community? That’s how a consequentialist ethic would frame the question. For the term “the ill,” it certainly will expand the range of options. It will, as a matter of fact, enhance our autonomy as patients, and as a matter of fact, give us more control in our lives. And in general we think that enhancing autonomy, increasing control, is a good thing. It’s a good outcome, that’s why we change the laws about smoking weed. Okay, that’s one of the reasons, at least.

At least for families and loved ones, it may result in better end-of-life experiences if you have the availability of a lethal agent to end a dying process which you find insufferable. 

The other question I would ask – and I’ve got another set of them too – is whether or not participating in MAID on the part of medical professionals will increase or decrease trust in healthcare. Now, probably all of us in this room have a fair amount of degree of trust in the health care system, but if I was talking to a minority population audience – in particular, African-Americans, in our society, their level of trust in the healthcare system is not that strong, for a variety of reasons, which I won’t go into. But the question is: you add MAID to the healthcare system, is everyone going to see this as an enhancement, or are some going to see it as a threat? We need to ask that question, because that’s one of the outcomes we’d have to anticipate. 

The Slippery Slope

Other consequentialist concerns: what of the slippery slope? Rabbi Dorff, again, talked about this. And the immediate move – I see if, as a matter of fact, MAID is legal is under the legislation. I have to self-administer, but suppose I’m dying and I have ALS and I cannot, physically, provide the medication to myself. I should have the same right to end my life early under MAID, and so it would require someone else assisting me in doing so. And that was something we’re going to have to contemplate and see whether or not that would be the next step, because now someone else is causing, literally, my death. 

There’s also the empirical slippery slope. A lot of folks in the disability community are concerned because there will be a judgment that there are some lives that are not worth living because of incredible suffering. I see a lot of individuals [that] live with disabilities. They live with a curtain level of suffering – well, as a matter of fact, our attitudes about the quality of their life change, because now there are some persons who say their lives are not worth living. We have to think about that. And then some have pointed out the fact that the more palatable suicide becomes in society, the more likely there is to be something called suicide contagion, and we’ve got some stats about that, but I’ll leave that.

A Rights and Duty-Based Perspective on MAID

What about a rights and duty-based perspective when it comes to MAID? The most obvious objection from that perspective is that life has intrinsic moral worth. A Jewish ethic grounds that in relationship with God, but Emmanuel Kant, who was not Jewish, says, as a matter of fact, all persons’ lives have intrinsic worth, and as a matter of fact, we have a duty to preserve one’s life. And Kant thought that using your autonomy to end your autonomy was a self-contradiction, and if you’re as rational as Kant was, you wouldn’t do it.

Second, the right to self-determination is based on certain social conditions. It’s a choice, let’s say, to die, or a choice to continue to live until natural death. And social conditions vary when it comes to choice. “Choice” is a loaded term. We all want to exercise it, but we don’t all have the opportunities to do so. And if I don’t have access to reliable health care, which would provide good end-of-life coverage, then as a matter of fact, my choice is either to suffer or to die, because I may not have access to good health care. There is a duty to protect those who are vulnerable, who may not be able to exercise their autonomy in an authentic fashion. And so our duty to protect the vulnerable is important to consider.

Also in terms of a duty-and-rights based perspective – I pointed out there’s no basic right to health care, but then secondly – this is one my partner said I shouldn’t present, but I’m going to give it a stab because it’s a very strong rights-based argument. If I’m dying and I’m on a ventilator, I can ask that the ventilator be removed – that’s legal, that’s ethical. If I’m on dialysis, I can stop dialysis. So some patients can end their lives by having a life-supporting technology removed. I want to end my life but I’m not on a ventilator, I’m not on dialysis – I should have the same right. This is rights talk. I should have the same right to end my life by ingesting a drug as others have to end their lives by withdrawing or withholding life-sustaining technology. It’s an equity argument. 

A Virtue-Based Ethical View on MAID

And then finally, with respect to virtue-based ethics and how we frame up the topic – medical professionals, I think, some of them would argue that this is a part of a continuum of care. As a matter of fact, compassion for the dying is very important, in particularly when one’s suffering is intransigent, irreversible – we’re talking about suffering, not pain.

Quick point: suffering is the experience of life being meaningless, purposeless. Pain is not the major reason why in the states that have MAID, [patients] choose MAID. They choose MAID because of a loss of meaning and significance in their lives. Okay, just so we’re clear, we’re talking about suffering. So to treat suffering, it would be consistent, according to many medical professionals, to provide aid in dying. And it’s the last option on the continuum of care, according to Tim Quill, in one of the articles I sent over. 

And finally, it enables the patient to act on their own sense of the good at the end of their life. And for physicians, medical providers, to enable a patient to achieve the good the patient thinks is important, is part of trustworthy medicine. If preserving the good is a right, though, then a medical provider has a duty to preserve life, [and] would participating in MAID violate the duty to preserve life? Got to think that one through. Are physicians who may participate in MAID intending the death of the patient? And is it always wrong for a healthcare professional to knowingly intend the death of a patient? Because that’s part of what you’re doing when you write the prescription. You know what’s going to happen. 

And to what degree, then, is the physician or advanced practice person who writes the scrip for the drug? To what degree are they then morally responsible if the patient takes the drug and dies? So it’s a question of moral responsibility being once removed. It’s different than directly causing, but you still are an essential part, a causal part, of that process.

That usually takes me two weeks. But that’s okay. I hope you’ve got it laid out. These are the questions that, as a matter of fact, we have to consider as we move forward.  

Mike Freiberg: I just sort of, through the course of the speakers here, I took some notes on my phone, so if you see me looking at my phone I’m not, like, checking the Twins score to see if they’re continuing their winning streak, but just want to make sure I mention what I want to mention here.

So yeah, I’m the author of the end-of-life option act, which authorizes the process of medical aid in dying. I’m glad both Rabbi Dorff and Dr. Postema sort of acknowledged the distinction in terminology here between terms like “assisted suicide” and “medical aid in dying.” I definitely prefer the term “medical aid in dying.” And actually they both did a great job of kind of covering this issue, so hopefully there are still some things left for me to say. That’s always the risk in going last, particularly when you’re preceded by such distinguished speakers. 

So Dr. Postema showed, sort of, the brief description from our research department on the summary of the bill, but I’ll just go over it quickly because there was a fair amount of text up there. So the bill follows the practice in the 10 states that have authorized medical aid in dying. It says that if you are diagnosed by a medical provider with having a terminal illness, which means that you have six months or less to live, and it’s verified by a second health care provider and you are of sound mind – so, you have ability to make an informed decision – then the medical provider can prescribe for you a medication which you have to be able to self-administer that will end your own life. So this is not something – nobody can give you an injection or an infusion or anything like that. You have to be able to self-administer it. 

And I mentioned that the person has to have mental capacity. Rabbi Dorff mentioned the case of clinical depression – you know, that could impair a person’s ability to make an informed decision. So could something like Alzheimer’s disease. I’ve actually had requests from many people to expand what the bill would authorize, too, because they say, quite understandably, that “If I ever have Alzheimer’s disease and I’m advanced to a point where I don’t know who I am, I don’t know who my kids are, I should be able to end my own life.” But a critical component of the bill is that the person has the ability to make an informed decision, and they wouldn’t in that case. So we have not expanded it  to that point. 

Rabbi Dorff mentioned the problem of money. I think it’s important to mention that the bill criminalizes coercion, so nobody can coerce a parent to make this decision because they’re concerned about the financial impact of continued medical care. So any form of coercion is a penalty. We talked about that in one of the Committees. 

Differences Across States

And the requirements are the same, as I mentioned, as in the 10 states that have authorized medical aid in dying. So it’s similar to the California law that Rabbi Dorff described. It’s been expanded by a Supreme Court decision in Canada, but that does not apply in the United States, so it’s not been expanded to people with Alzheimer’s or anything like that in none of the 10 states. The basic requirements that I outlined, have always stayed the same. And I think that’s kind of a counterargument to the slippery-slope argument that Rabbi Dorff mentioned. Certainly, you want to consider that in any law you’re advocating for, but I think when you have a record of 20 years where the basic requirements haven’t changed in any US state, I think that kind of is a counterargument to the slippery-slope argument. 

Just some statistics here – most of the people, about 90% of the people who’ve utilized medical aid in dying in the states that authorize it, have certain forms of cancer or ALS. They are in hospice, for the most part, in the states that authorize it. They’re already there. Medical aid in dying is completely compatible with hospice and palliative care. And I completely agree with Rabbi Dorff about the goal that it’s important to visit people who are suffering from terminal illnesses. And I think it’s not only compatible with MAID, but the experience from other states that have authorized it shows that it can kind of bring people together. In the legislative hearings we’ve had, there has been very compelling testimony, very emotional testimony, from people who’ve seen their loved ones, who’ve helped their loved ones, go through this process, and just they had a beautiful experience, where the person’s suffering ended. Their family was all present, and I think hopefully it can counteract some of the loneliness that Rabbi Dorff talked about.

So just in terms of where the bill is at this year, it’s gone further than it’s ever gone before. We’ve had what we call “informational hearings” in previous sessions, where no action, no official action, is actually taken on the bill. But this year, there have been hearings in four committees in the Minnesota House. It started with a five-hour-long hearing in the Health Committee before the session started, and then it’s been heard in the Public Safety Committee, the Judiciary Committee, and the Commerce Committee, because of some of the insurance provisions that are in there.

Can We Pass the Bill This Year?

So the goal, in my mind, kind of advances – you know, this year, we have sort of a Democratic trifecta. We’ve passed legislation, I think, that emphasizes bodily autonomy. I was glad to hear from Dr. Postema that autonomy is not just a legislative goal but an ethical goal as well. So we’ve passed legislation like the Protect Reproductive Options Act, which puts the ability to access reproductive care, including abortion care, into the Minnesota statutes. We’re hoping to put it into the Minnesota Constitution as well. 

And I think the End-of-Life Option Act is an important piece of legislation that also authorizes bodily autonomy, this time at the end of life, which I think is a critically important time in our life as well. 

So I said, we’ve made greater progress than we ever have on this bill. I’ve been carrying it for eight or nine years at this point, reintroduced it every year. Prior to this session, we [always] had divided government of some form. It’s generally been opposed by the Republican party. At this point – so I should say, let me clarify that if you do a poll of Minnesotans or American citizens, people of both parties tend to support this, but unfortunately, working in a legislative setting, legislators can be very influenced by the opposition of organized and financed groups. So in my mind, the elected Republican legislators don’t necessarily reflect the view of of a majority of Minnesotans, even Republican Minnesotans, because I think almost everyone has seen somebody, knows of somebody, who’s died, and many know somebody who’s gone through a lot of suffering at the end and would have liked to have this sort of option. So it’s been opposed by the elected Republicans at this point, and there is very organized opposition, as well, from groups that are largely lined up on the same lines as the abortion debate. So the Catholic Church has funded a group that’s calling themselves the association for ethical health care, I think, and they turn out people to testify against the bill.

Opposition to the Bill

There’s a lot of misinformation about the bill, too, that’s out there, that’s kind of encouraged by the groups and people who oppose the bill. So we hear testimony in the Committees that this is going to be used to target people with disabilities. And Dr. Postema mentioned how this could affect our views of disability. But having a disability does not qualify somebody to use medical aid in dying. Certainly, it’s possible somebody might have a disability and also a terminal illness, in which case they might qualify, but if they just have a disability, you know they’re leading, hopefully of a good, productive life and they don’t have a terminal illness, so they are not eligible to use medical aid in dying. And the experience from the other states shows that the people who use medical aid in dying are mostly well-educated, fairly well-off, and haven’t had a disability in the past. As I said, it’s generally people with cancer and ALS. 

So that’s kind of the organized opposition. I mentioned that the Bill’s gone further than ever before. We’ve had four legislative hearings in the House. Unfortunately, it’s been a little more difficult to make progress in the Senate, and it – I mean, I’m not going to say the bill is over at this point, we still have a few weeks left in the session, and a lot of things can change, but there have been a couple Democratic – two, in fact – Democratic senators who’ve made some public statements against the bill, and the Democrats have a one-seat majority in the Minnesota Senate, so it’s always had kind of a tough – it’s certainly had a tougher hill to climb in the Senate than in the House. 

As I said, things can change. I know there have been efforts to reach out to those senators, and there’s a possibility that a Republican senator could support the bill too. So I certainly haven’t given up hope for this session, even though there’s not that much time left, but it’s something. If it doesn’t happen this year, I plan to continue to advocate for it, because I think it’s an important bill that lines up with the goals of the current legislative majority, as well as with myself personally. If I’m ever in that position of having a terminal illness, it’s an option I would like to have. My parents, who are in their 80s, have said to me they want to have this option, and they want this bill to pass. So I just think it’s really important, and I’m encouraged by the response I’ve seen from different communities. I know the Jewish community is one we’ve been trying to reach out to for a long time, so it’s great to be here at Beth Jacob, and I appreciate your interest in the bill and, you know, am happy to answer any questions anyone has.

Sheldon Berkowitz: Thank you, Representative Freiberg, for explaining your bill to us. Let’s give all three of our wonderful speakers a round of applause.