This year’s St. Louis University School of Law's annual health law symposium will address the ongoing ethical and legal questions about policies and practices that impact utilization and quality of life that improve dying. Beyond the headlines of right to die legislation, many patients and their families are faced with hardships and ethical dilemmas. In this podcast Assistant Professor of Health Law & Ethics Kelly Dineen will explore the policies that can address issues of untimely and premature death and improving the quality of dying. 

Corie: Thank you for joining us Kelly.

Kelly: Thank you.

Corie: In 2014, the idea of death with dignity was brought to the forefront of our minds when we heard news of Britney Maynard, the young woman from Oregon who suffered from brain cancer and chose to end her life. Can you start us of by discussing the legality of this case and her decision?

Kelly: So Britney, as you know, chose to move to Oregon from California, because she had a terminal diagnosis of brain cancer and wanted to have the option of ending her life. When she chose to do so through medical aid and dying, it was legal – and still is legal –in Oregon and at the time was not in California. This would allow her to take a prescribed dose of medicine that would end her life. The reason these issues come up is, in part, because of the poor communication around the end of life for patients, and to some extent, the feelings of loss of control, which are normal anytime somebody has a terminal diagnosis. They would of course have a loss of control. The reason that these laws exist in the first place, which as you know is not without serious controversy, probably reflects the social state of our support in this country for people at the end of their life, and the fears they have about undo pain and suffering, loss of identity, loss of care. And also it’s worn out over time as we’ve seen why people have chosen to exercise this option in states where it’s legal that people are terribly concerned about being a burden for their family and loved ones.

Corie: So you mentioned about being a burden for family or loved ones and some concerns about other effects of the illness. Is that why you see that most people, or some people excuse me, with severe illness choose to make these decisions about the end of their life?

Kelly: So that’s an interesting question, Corie and I don’t think there is any one answer. Those that are opposed to these kind of state laws are concerned for those very reasons; that in fact people are making this choice, not because it’s what they want, but because the supports are not there and they fear for the burden, and the financial burden as well, as a matter of fact, on their families. And the counter argument is that we need to put in place supports, so that people don’t feel that they are forced to make that decision. Historically too, we know that there have been abuses of people, particularly those with disabilities, based on social concerns. That’s another reason why social concerns are probably one of the more challenged reasons, and also reasons that give us cause with regard to this legislation.

Corie: So what are some of the ways that we can look at the law and see how it can affect these decisions, potentially positively or negatively, or just impact change?

Kelly: So just to follow up sort of on this question and the previous question; the thing that is good about the laws as they exist in the four out of the five states, I think with medical aid and dying is there are strict procedural requirements, so that we have some assurance up from that people are in a terminal state of their disease process, that they have thought it through, that the underlying considerations have been thought through, and that there are waiting periods. Those procedural requirements also allow us to look back and so states like Oregon Washington, now California, Vermont now have tracking so that we can look back and see exactly why these people made this choice, who were they, what socioeconomic class did they fall in, what was their diagnosis – these sorts of things. So there’s a way to have a check before this takes place and after the fact, so that policies could be modified and we can see why people are making those choices. So in that way, that’s a good example of a state law that takes these considerations into play. The criticisms of those kind of procedural requirements is that people who have disease processes that don’t fall into sort of the typical conditions we think about like terminal cancer. So people who have things like ALS and other aggressive neuromuscular diseases; for example, because of the requirements where the patients themselves has to be fully competent and also they have to self-administer the drug, somebody with ALS, for example might feel compelled to take it early, because they don’t know when they will lose the ability to swallow. Somebody with ALS, their doctors also may not feel comfortable enough saying exactly when they have six months to live. So they may not have the opportunity at all if they wanted to opt to such a thing. And so you see that patients that follow in these categories that aren’t as clearly defined, doing things like voluntarily stop eating or drinking, which is something that we see that’s pretty ubiquitous actually and just recently being sort of talked about in a more consistent way. And there are various organizations and supports available for people who want to take that option but you know there are pros and cons to that as well.

Corie: So part of the symposium that’s coming up is we’re discussing specifically the quality of dying. So you mentioned sort of two different people that fall into this category; those with terminal illnesses that are a little more obvious or those with illnesses like ALS, things that are more progressive. So can you speak a little bit about the quality of dying, what that means, and what that might mean in both of these scenarios?

Kelly: Right. So, one of the big areas which actually doesn’t fall within the medical aid and dying so much is just a reality at the end of life for everybody regardless of diagnosis –things like palliated care and hospice. These exist and they are set up to provide care and support and comfort to people at the end of their life. Unfortunately, hospice in particular, is set up to take patients who have less than six months to live; however, most people don’t even get a referral to hospice until the last weeks or even days of their life. And then this is sort of when the practice piece comes in; that you can make all kinds of laws that would in theory be set up to help people, but unless the culture of medicine and healthcare embraces that sort of approach, it’s not going to matter. So I hear over and over again from practitioners in these fields how frustrating it is for them that they get referrals so late. That ideally they should be part of the care team from the time –so with palliated care physicians, the idea is that they’d be part of the care team from the time at which the person is diagnosed with a life limiting condition, meaning it’s a chronic life-limiting condition, but not in the six month window. And the idea that palliated care could come in and say, ‘Look here is all the treatment, you can take all the treatment you want. Let’s talk about what matters to your life, what the goals of this cure are for you, and what that means for you in your particular situation.’ Right? So is getting to a kid’s wedding the most important thing to you, in which case then maybe we favor a more aggressive treatment to get you to that goal. Is getting to a vacation? Is just being at home the most important thing for you? So then we should shift everything that we do for you, at home. And so it’s a very holistic way of looking at medicine. Unfortunately, it’s a new field, it’s drastically understaffed, there are more than 8,000 residency spots needed that are unfilled. I’m sorry not residency spots, 8,000 palliative care position needs that are unfilled. Sorry. But there are inadequate residency spots. There’re all kinds of problems and the other thing is these kinds of specialties are often siloed and seen as sort of as a ‘if I’m a practitioner in another field, once I have exhausted everything I can think of, and I’ve got nothing else left, then I’ll make a referral to palliative care.’ Which is not the way it should work and I think that’s the practice shift we need to work on.

Corie: So how can that shift happen? Is there something that could happen legally that’s going to move towards that or is it really in the thinking of the physicians and other folks that are involved in this care.

Kelly: I think it’s a combination, Corie. Yes, the law by itself can’t do any of these things, but for example, we know that physicians and other healthcare providers do not talk to their patients about the end of life. Even when they have life limiting conditions, they do not talk to them about what it’s going to be like, what they can expect and what they want. So just this last year, centers for Medicare and Medicaid services allowed for the first time for physicians to be able to bill, so they created a billing code for discussing advance care planning with patients. We’ll see what happens, but the idea that that policy change in the law could, in fact perhaps, help encourage or incentivize these discussions which might, in turn in small steps, encourage physicians to think about it more with other patients and sort of move us in the direction of better communication.

Corie: To switch subjects just a little bit here, you’ve done a lot of research on people facing chronic pain issues, which is a little bit different than what we’ve been talking about, but can you speak about the issues there and how this can sometimes lead to accidental death or the choice to commit suicide?

Kelly: Part of my work in nursing was working with the chronic pain population and it’s been interesting to me to see developments overtime. When I was a law student, I worked with Sandra Johnson, who did a lot of great legal work on this issue. And so what I’m concerned about is a multitude of things. So a few things, so we see that overtime as people get concerned about addiction, they seem to diminish their concern about people in chronic pain. My research is sort of a push to say no let’s look at these groups of patients, all at the same time, because they are not a mutually exclusive groups and they are all legitimate patients worthy of respect. But, in chronic pain treatment, it’s not just about treatment with pain medication that is just one tool in a toolbox of a good practitioner and which may or not be effective, which may be used for short term. But, at any rate, unfortunately the two issues are conflated, because you do use opioids at times in the treatment of patients with acute and chronic pain. But here’s my primary concern, of course everybody has heard the problems with opioid overdoses, which are concerning. Most people have heard the statistic from the CDC that opiate overdoses now outpace deaths from car accidents, for example. What most people do not know even though it is there, usually in a tiny little footnote, is that the CDC groups together all sources of overdose, so all suicides, all accidental, all homicides, are all grouped together in that statistic.

Corie: That’s a lot to group together in that one number.

Kelly: And that concerns me because that’s two or three; I think homicides are a very small number, thankfully. But to group accidental overdoses and suicides together, it’s an unfortunate message because their root causes are so different. The solutions have to be tailored to the problems, right? So with suicides, there is very little and no universal advocacy for screening patients for suicidality. Even though we know from the limited research that exists that the rates of thinking about suicide, attempting suicide are very high in people with chronic pain, which does make sense of course. If you can’t imagine when a pain will stop for you, it can create those feelings. And we really need holistic support for people with these conditions. The same is true for people with substance use disorders they have very high rates of comorbid mental illness and suicidality. And my point is to advocate for solutions that focus on the totality of the problems not just to play what I think of sometimes like a game of Whack-A-Mole, like ‘oh prescriptions for these we think are bad’ so we hit the Whack-A-Mole of that and then up pops heroin use, right? Then we’re going to hit that Whack-A-More, but we’re not thinking about how we address access and treatment to substance use disorders, for mental health care, for sort of the holistic treatment for people that are caught up in this need. Instead of just criminalizing people who we suspect of substance use disorders or stigmatizing those certain conditions.

Corie: Everything that you’ve been talking about here has been so interesting today, Kelly, and you will hear more from Kelly and her colleagues on this topic  on April 1st. You can visit law.slu.edu for more information on the health law symposium. Thank you for joining us so much today, Kelly.

Kelly: Thank you.