Medical Aid in Dying Laws

Jamie DePolo: Hello. As always, thanks for listening. Our topic today is difficult for some people to think about but for others, it's hugely important. We're going to discuss medical aid-in-dying laws, also called death with dignity laws, physician-assisted suicide laws, and right-to-die laws.

Our guest is Dr. John McGeehan, an internal medicine specialist and professor of clinical medicine at Cooper Medical School of Rowan University and Cooper University Hospital in Camden, New Jersey. Dr. McGeehan is uniquely qualified to help us learn about these laws. He was the chair of the Bioethics Committee of the Medical Society of New Jersey from 2016 to 2018, when New Jersey's medical aid-in-dying law was first proposed. He also serves as chair of the Cooper University Hospital Bioethics Committee. And for full disclosure, I want to tell everyone that I also serve on the Cooper Bioethics Committee as a community member. Dr. McGeehan, welcome to the podcast.

Dr. John McGeehan: Oh, thank you for having me.

Jamie DePolo: I really appreciate you joining us today. So, Oregon was the first state to pass a law like this, called the Oregon Death with Dignity Act in 1994. I believe Washington was the second state, but that law wasn't passed until 14 years later. Since that time, I think it's eight more states, plus Washington, D.C., have passed similar laws. So, could you tell us some of the history of how these laws first came to be? What sort of sparked their creation?

Dr. John McGeehan: Yeah, in almost every instance, it was sparked by patients. Patients who felt their dying needs weren't being met and no one was listening to them to allow them the opportunity to have a dignified death. And even here in New Jersey, that was the case. This was mostly physician-opposed in the beginning and patient was...patients were the ones behind this.

Jamie DePolo: Okay. Now, despite what some people think, the regulations to use medical aid in dying, as far as I know, I'm not an expert on all the different states, but I know in New Jersey, they're very stringent. And some people are concerned that these laws are going to be used too much, or you know, the wrong people are going to be forced to use them. So, could you talk about some of the checks and balances that are in place?

Dr. John McGeehan: Oh, absolutely, and it's not just in New Jersey. If you look back, for instance, you had mentioned that Oregon first passed the act in 1994, it didn't get implemented until 2006 because of court challenges. This has been a rocky road, for people to embrace this as a way to care for people at the end stages of their life. In New Jersey, we spent a long time discussing this and specifically came up with the name, the medical aid-in-dying, because that's exactly what this is. In other states, the law may say physician-assisted suicide, but once you put suicide in there, people take a very negative view to this particular act. In New Jersey, we took a long time discussing this and drafting it. It's very, very similar to what it is in Oregon and all the other states, and it has many, many aspects of it that allows this not to be abused, and I think it's important that we go over those.

Jamie DePolo: Sure. Could you talk some about that?

Dr. John McGeehan: Yeah. So, for instance, in New Jersey, the law requires that you are a resident of New Jersey, so you can't come across the Ben Franklin Bridge, be a resident in Pennsylvania, and utilize the medical aid-in-dying law in New Jersey. You have to be a citizen of New Jersey, with all of the legalistic proof behind that. 

Jamie DePolo: I'm sorry to interrupt, but you have to have a driver's license, like how long... like say somebody moves here, not specifically for that reason, but say they moved here a year ago and then suddenly developed a very debilitating illness that they might want to take advantage of this law. How long do they have to live here?

Dr. John McGeehan: It's about a year, and I know it's the same we use for in-state tuition for students. It's not anything specific to this law. It’s what the particular state used to declare that you're a legal resident. And then after that, it's a very arduous process and some would argue even too arduous, but I think right now, it's important because everybody has to accept this. And that is, on top of that, you have to be declared to have mental capacity. And what that means is that you truly understand the implications of the decision that you're making, and that has to be attested to by two physicians. So, somebody can't just go to a doctor and get a prescription for the medications, they have to get a full evaluation and then be sent to another doctor for an evaluation, and those evaluations have to put in writing that you have the mental capacity to proceed and that you, in fact, do have a terminal illness. And we define terminal illness exactly the same as it would in hospice, for instance, and that is an illness that even with aggressive treatment, you are not likely to live six months.

Jamie DePolo: Okay, so that...I'm hoping or I guess I should ask you in your experience, has that eased the concerns that some people had, that perhaps it was going to be used on people who were mentally challenged, or people who couldn't really speak for themselves, didn't have that capacity?

Dr. John McGeehan: Absolutely, and in fact, the law states that if either physician is uncertain about the mental capacity, they have to be referred to a mental health provider. And it cannot move forward until this patient is designated to have the mental abilities to make this decision.

Jamie DePolo: Okay. Thank you. Now, I know in New Jersey, and I think it's this way in other states, somebody who wants to use this law has to be able to take the medication themselves, nobody can help them take it. So, to my mind, and I know we discussed this in the Bioethics Committee, this sort of automatically excludes somebody who has some sort of neurodegenerative disease, like Lou Gehrig's disease, or ALS, or something where, you know, they can't move their arms. So, how does that look from a bioethics perspective?

Dr. John McGeehan: I'm glad you asked that question, because it's very important. People with, you know, malignant brain tumors that's affecting the use of their upper extremities. Lou Gehrig's disease is the most striking example. Right now, they would not be able to self-administer the medication, so let's go back to the law. The law states the patient must be able to self-administer, and that somebody must be present while this is happening, but cannot assist in any way with the administration of the medication. And the reason this is important, is we have to make sure that the public understands that this is not euthanasia, and never will be euthanasia. And euthanasia is sort of linked with Kevorkian of a number of years ago. 

The difference is euthanasia is a healthcare provider, administering the medications for the purpose of ending that person's life. That's completely different than the use in medical aid in dying, where the patient administers the medications themselves without assistance.

Now, the problem comes, well, what about the patient you just said? Well, there have been states, California, for instance, working with devices, that an individual can intentionally move a certain part of their body, that might be able to administer the medication that way, without being able to fully move their arms. So, there's a lot of action out there and technology that still allows the patient to be the one administering the medication, but not in the usual way we think of taking a glass and a cup of pills and swallowing. 

Jamie DePolo: Okay, and these are pills. Is that correct or are there other liquid options?

Dr. John McGeehan: Yeah, a lot of these pills can be emulsified, but there's a lot of pills, and this is the problem. Let's back up a minute to reassure people.

Jamie DePolo: Sure.

Dr. John McGeehan: The other thing about the law is this, you have to request, in writing, that you want this to your doctor, and verbally, twice, over a minimum of 15 days. That law prevents anything from happening that's just spur the moment and emotional. This has to be thought about for over two weeks. Somebody has to go through the arduous process of talking to a doctor twice, writing it in a letter once, and all this separated by at least 15 days.

And even after they do that, and after they've made appointments with two doctors and got all the things I mentioned, the pharmacy is not allowed to release the medication to the patient for another 48 hours, putting another stopgap in the process. So, there's multiple safety features to prevent somebody who's in a terrible spiral depression from just acting in the moment.

Jamie DePolo: And I was also going to say...so...but somebody with depression, I'm assuming wouldn't necessarily qualify, as you said, there has to be a terminal illness, so there would have to be kind of, if depression were there, it would be on top of something else.

Dr. John McGeehan: It's so wonderful that you asked that question because depression doesn't equal lack of capacity. So, many people are depressed, and one could argue that if you're battling cancer, that's just the norm. That doesn't mean you don't understand the implications of your actions, and if you have the capacity to truly understand the implications of your action, and you're in a depression, it doesn't matter, you can still move forward.

Jamie DePolo:  Okay. And while we're kind of on this subject, sort of related, Medicare, which insures most people age 65 and older, and I don't know any statistics, but just off the top of my head, it seems like the people that would be choosing this might skew older, but I'm not sure. But Medicare doesn't cover any costs related to medical aid in dying, and I believe the medicines alone can cost about $3,000, which is very expensive. Plus, as you said, you have the cost of two doctor visits. You may have even more if one of your doctors decides that he or she doesn't want to participate and refers you to somebody else. So, do you think that will ever change, and how does that look from a bioethics position as well because it does seem to favor people who are more well-off or people who have private insurance?

Dr. John McGeehan: It does. That's a lot to answer, so let's do it one at a time.

First of all, the medications. Initially, when this passed in Oregon, the medication that was used was something called Seconal, a barbiturate, and it was about 100 times the normal dose, and it was very cheap because it was a generic medication that had been around forever. Shortly after physician-assisted suicide got legalized in Oregon, and then Washington, and other states, the makers of Seconal basically upped their price dramatically to the numbers that you were mentioning. There are, however, other cocktails that are equally effective, that are done by generic medications. And therefore, the cost can be more reasonable than what you mentioned, with some of the most recent cocktails that include digoxin and medications such as that that have been around forever, so I think there's a way around that. 

In terms of the doctor's visits, they rightly could be called second opinions or capacity evaluations, at which point insurance would cover that.

But I think you bring up a really striking point is what if you don't have insurance? What if you have poor insurance? Unfortunately, so many people in this country do. Are those patients disincentivized to use this law? The answer is absolutely. But you could also say that for open heart surgery or almost anything else.

Jamie DePolo: that's true. I'm curious about the medications, are those specified in the various state laws that, you know, X cocktail must be used, or is that really up to the doctors?

Dr. John McGeehan: Yeah, that's up to the doctor, and there are resources that every doctor can access for that. The problem is, there's -- and nobody talks about this -- there's very few pharmacies willing to dispense. And it's not something that I can send a prescription to Epic [electronic medical record software] to a local pharmacy because a big error flag will come up because these are lethal doses of medications. So, the prescriptions have to be basically handwritten or sent in a direct manner to the pharmacy. And they have to be delivered by the patient or the patient's surrogate, not electronically sent to a pharmacy. So, there's a lot of restrictions on how these prescriptions are sent.

Most people who are interested in this particular law, are able to contact people who know how to do this and it does move forward, but it's a big challenge.

Jamie DePolo: I can imagine and especially, I guess, I'm thinking if somebody does have a terminal illness, they probably have other things going on, as far as maybe they...maybe it's difficult for them to drive. Maybe, you know, it's difficult...like they have severe fatigue, you know. It just seems like there could be some hurdles. 

Dr. John McGeehan: Huge hurdles and it takes a lot of strength and a lot of support to move forward with this. But in the patients that I've talked to, and the many I've heard about that have taken advantage of this, everything has gone very smoothly. Because if you look at people who want to do this, very seldom now, is it because of intractable pain. Because of palliative care and hospice, we have phenomenal ways to relieve that kind of pain. It's mostly the patient's inability to control their life at the end. Their fear that loved ones may be taking care of them in ways that are sort of embarrassing, if you know what I mean. The loss of dignity tends to be the major reason people take advantage of this.

Jamie DePolo: Okay. I do want to ask you, too, in July 2022, so July of this year, a Rutgers study came out and found that of the, I think it was 5,329 people who had used medical aid in dying since Oregon legalized it 23 years ago now, more than 72% were white, well-educated people with cancer. So, I have to ask, is this another example of structural racism in medicine? Because as you said, the... you know, the laws do seem to favor the well-off who have good insurance.

Dr. John McGeehan: Yeah, it's hard to argue with those numbers, and I don't have the expertise to explain them, but I think it's depressing, to say the least. If you look at the people who have taken advantage of it, the vast majority are over 65 years of age, which means they should have Medicare. So, therefore, that insurance barrier shouldn't be there. So that's something about the numbers that confuses me a little bit. Over 60% are suffering from cancer. You're suffering from cancer, you’re already utilizing your insurance for all the treatments and testing, et cetera. And about 90% are on hospice at the time they take advantage of this, which is another health plan. So, I'm a little suspect of the numbers when you look at the types of patients who take advantage of this particular entity, and their age, and their insurance opportunities.

Jamie DePolo: Okay. Okay. That's good to know. And I'm also wondering, too, I mean, you mentioned before it was that the idea of dignity and people controlling that...their level of dignity at the time of death. If somebody does get diagnosed with metastatic cancer and can kind of, perhaps imagine, what's coming. I guess, if you have talked to any of the people or read some of the reports, do you think that is why it's so many people with cancer and not other diseases?

Dr. John McGeehan: Yeah, I do. You mentioned the neurodegenerative diseases, and that's something that we're going to hear more about. I think that group is rightly going to rise up and ask for equal opportunity in this, because the cancer patients, fortunately, have so many organizations in this country that they have a voice, they have power, they get what they need, and they justly deserve. But others may not. Rare diseases that don't have that particular speaking voice.

Jamie DePolo: Okay. And speaking of organizations, I know there are some non-profits set up to help people who want to take advantage of these laws, Compassionate Choices comes to mind right away. Are there others that you know of that you think, do a good job and present this information factually and helpfully?

Dr. John McGeehan: I've looked at the Compassionate Choices website, and I've spoken to people. They are a remarkable organization. There are others, but I think they are the one that's been around the longest, and to me, I just think they're amazing people. So that's a very excellent resource and their online resources are spectacular.

Jamie DePolo: Okay. And now aside from Compassionate Choices, I guess I'm wondering if someone does live in a state with a medical aid-in-dying law and wants to use it, what advice would you have for them?

Dr. John McGeehan: Yeah, I'd like them to realize it's not going to be easy. They can first reach out to their physician who they know, that be a primary care physician, or an oncologist if it's somebody suffering with cancer, and bringing this up for discussion. Like anything else, that physician may not agree with this, but that physician then has the obligation to refer that patient to somebody who is of like mind. So, you get a referral to somebody else, or that doctor decides to run with it. Set up the other appointment, start doing the capacity evaluation. I've looked at all the forms that have to be filled out. This is a lot of work for the physicians, but I've never heard where any of the physicians backed away because of the work because they want to be able to help their patients.

Jamie DePolo: Okay. And then finally, what if somebody lives in a state without this type of law? Do they have any options or no?

Dr. John McGeehan: No, they do not. Let's be honest, for many, many years, patients facing a certain and miserable death, have found ways to end their own lives, be that handguns, or in the garage, or whatever, that's just not right. It’s horrible that somebody has to resort to that, horrible that the family has to then find and deal with that afterwards. And I think it's that and patients talking about that, that’ll have more of these laws passed. But right now, if you're in a state that does not have this law, reach out for palliative care, reach out to hospice, get all the comfort and support from those incredible organizations. There's no reason suffering has to be present. 

Jamie DePolo: Dr. McGeehan, thank you so much. This has been so helpful and so educational. I appreciate your time.

Dr. John McGeehan: Anytime. Thank you for doing this.