Editor’s Note: This story includes accounts of self-harm and suicide. The National Suicide Prevention Hotline number, a free and confidential service, is available in either English (1-800-273-8255) or Spanish (1-888-628-9454).
Three times as many states allow the terminally ill to access life ending drugs now as did five years ago. In Vermont, that state recently expanded access to out of state residents.
Ten states and Washington, D.C. have medical aid in dying laws on the books. More are considering legislation this year.
But that leaves almost 80% of states, and the people living in them, with no ability to access this kind of care.
“People want options, and they want a say and for some people, they really worry about losing control. And that is a type of suffering,” Dr. Diana Barnard, a family medicine doctor, says.
Today, On Point: What is and isn’t changing about how individuals and the law approach medical aid in dying.
Guests
Dr. Diana Barnard, Family medicine doctor with specialties in hospice and palliative medicine. She was one of the plaintiffs in a lawsuit against Vermont arguing that the residency requirement to access the state’s medical aid in dying law was unconstitutional.
Katie Engelhart, author of The Inevitable: Dispatches on the Right to Die.
Also Featured
Lindsay Wright, the wife of Youssef Cohen who tried to access Oregon’s medical aid in dying law after he was diagnosed with terminal cancer.
Michael Bien, an attorney who is suing California over it’s medical aid in dying law on behalf of those with disabilities.
Kim Callinan, president and CEO of Compassion & Choices.
Lenore Cornelli, her former partner shot himself after he couldn’t access medical aid in dying because his state didn’t offer it.
Transcript
MEGHNA CHAKRABARTI: Lenore Cornelli remembers loving the man Thomas Webb was. The man who enjoyed tennis and hiking. The chiropractor who made connections with his patients. The thinker who loved nature and had a deep knowledge of the world. And then in October of 2018, Tom was diagnosed with stage four pancreatic cancer. Uncurable and terminal. Lenore watched, helpless, as the cancer transformed her partner in the few months he had left to live.
LENORE CORNELLI: He couldn’t really eat. When he did, he vomited. And that made his symptoms even worse. His pain worse. He would moan most of the night, and sometimes tears would just be streaming down his face. It was very hard to see. Someone, you know, that you cared about. Very hard.
CHAKRABARTI: Tom was in severe pain. He was given narcotics but refused to take them. They gave him brain fog and he wanted to remain lucid. What he really wanted was a different kind of medication. He wanted a doctor to be able to prescribe him life ending drugs so that he could die at home in peace and on his terms. But Tom lived in Nevada, a state where medical aid in dying is not yet legal.
CORNELLI: I felt very helpless, very frustrated in a lot of ways. I even researched other states to see if I could get some medical assistance. But all the states have a residency requirement, and I knew that he didn’t have enough time to make a residency requirement. And so we you know, we just dealt with it the best we could.
CHAKRABARTI: The pain got worse, unbearable. And in the end, Lenore says Tom died at home. But it wasn’t in peace and not the way he wanted.
CORNELLI: I came back to his house to take care of him for the evening after work, and I couldn’t find him at first. So I literally ran through the whole house looking in closets. That’s when I saw the bullets and that’s when I saw the note. And then I had to try to figure out where else he could be. And it ended up, he shot himself in his car in the garage.
It was a difficult thing to come across. And it would have been so much better for both of us if his life could have ended as he chose a different way with somebody here who cared about him holding his hand, instead of alone. I just think sometimes we need to allow someone to make that decision when the pain is so severe, there is no hope that anything else is going to help and to have them exist in that manner for a prolonged period of time, which it shouldn’t be done. We don’t do it to our animals. We allow our animals to have a more dignified death than we do humans.
CHAKRABARTI: Lenore Cornelli. Her partner, Dr. F Thomas Webb, killed himself on November 8th, 2018. He was 70 and lived in Reno, Nevada. This is On Point. I’m Meghna Chakrabarti. Just last week, the Nevada state legislature passed Senate Bill 239, the End of Life Options Act. After a contentious debate and a narrow vote, the bill now goes to Governor Joe Lombardo’s desk.
This is the fifth time a medical aid in dying bill has been debated in Nevada, and it’s the first time it’s made it to the governor’s office. But it’s unclear if Lombardo will sign the bill. If he does, it will make Nevada the 12th jurisdiction to pass a law allowing terminally ill patients to seek physician prescribed medications to end their lives.
Also this year, Vermont passed a law allowing out-of-state residents to come to Vermont to seek this form of end-of-life treatment, making it the first state to do so. Currently, ten states and Washington, D.C. have such laws on the books. That’s three times as many as just five years ago.
But the option also remains highly controversial in this country. In California, a major court case is challenging that state’s law. So how have beliefs and attitudes changed about medical aid in dying in the United States over the past several decades? It was back in the 1990s when Dr. Jack Kevorkian was called Dr. Death and spent eight years in prison for second degree manslaughter in association with providing life ending medication to 130 patients.
So what has changed and hasn’t between then and now? Well, Dr. Diana Barnard is a family medicine doctor in Vermont with specialties in hospice and palliative care. And she actually sued the state to drop its residency requirement, claiming it was unconstitutional. And as noted, Vermont has done so. Dr. Barnard, welcome to On Point.
DIANA BARNARD: Thank you very much, Meghna. It’s a pleasure to be here.
CHAKRABARTI: How long have you been a physician?
BARNARD: 29 years.
CHAKRABARTI: 29 years. And how long of that period of time have you focused on the hospice and palliative care?
BARNARD: The last 15 years of my career have been dedicated exclusively to caring for patients and families who are living with serious illness.
CHAKRABARTI: What prompted you to make that shift to that focus?
BARNARD: Medicine, like many things in life, changes quickly. And I was drawn into medicine in order to be able to listen to people’s values and offer my expertise. And work together to develop a plan for how to care for them that was consistent with their own values.
And I began to see that people living with serious illness were not being well-served by a medical system that was rapidly changing with more technology, more drugs, more tests, and less time to really be present with people. And so I decided I would do something about it and work to increase my skills in meeting those needs.
CHAKRABARTI: In terms of becoming an advocate for medical aid in dying, I wonder, I mean, you must recall when I mentioned Dr. Kevorkian in the open here, I mean, it was not that long ago, not that long before you switched to palliative and hospice care that, you know, he went to prison for assisting people as they sought their deaths while being terminally ill. Do you recall that time?
BARNARD: I do recall that time, although I think about that being something very different than what we’re talking about today. I do recall when I first got a message from a local newspaper talking about a couple of retired individuals living in Vermont who were interested in passing a medical aid in dying bill in Vermont. And asking what I thought about it.
And as I considered and I thought about my patients, I thought, you know, patients really should be in control. Patients want options. And so supporting a bill like this seemed natural. And it actually preceded my transition to being a hospice and palliative care physician.
CHAKRABARTI: I see. Okay. I mean, I had asked because to me, these are sort of not necessarily bookends, but moments that describe a sort of maybe change in the legal approach to medical aid in dying. But from a physician’s perspective, I mean, you have been in attendance as patients have administered, self-administered life ending medication. Can you describe what that’s like?
BARNARD: Yes. You know, it’s very humbling to do this work. And I like to say, even I am here with my voice today as a physician. I’m really here speaking on behalf of patients and families who really are suffering and who want options. Every death is unique. Every life is unique. And people have individual challenges and individual hopes and fears.
But I will say when I talk to people who are nearing the end of their lives, you know, the three common themes that come up are people would like to be at home. They would like to be surrounded by family and loved ones, and they want to be peaceful or comfortable. However they describe that either in spirit or in body or both. And, you know, I will say for those deaths that I’ve attended, for people utilizing medical aid in dying, they are incredibly peaceful. And people have those three simple wishes. And it can be a beautiful moment and experience.
CHAKRABARTI: And briefly, describe what a person has to do in order to access medical aid in dying in Vermont.
BARNARD: Well, in order to be eligible, a person has to be over the age of 18, and you have to be living with a terminal illness and you have to have been given a prognosis, which is an estimate of how long you have to live, of less than six months. And you have to go through a careful process with many safeguards to ensure that you have thought carefully about what you are asking for, that you have sought alternatives and the best possible end of life care so that your suffering is managed, and you might not need to move forward.
You have to see two different physicians who each make their own assessment of your understanding of the law. And you have to be able to go through this process on a voluntary basis. You can stop it at any time. The patient is in charge and the patient must be able to self-administer in the end as a final confirmation that the whole process is driven by the patient.
CHAKRABARTI: Have you ever had a patient who requested it, who was denied?
BARNARD: Well, many people express interest in this earlier in their illness. So some people ask when they’ve been diagnosed with a terminal illness, because they want to be aware of their options. You know, some people are planners and just like they’re thinking about their second- or third-line chemo, if they’ve been diagnosed with a cancer, they also want to hear about their plans for what happens when their illness progresses.
And then there are some people who have diminished capacity, whose illness is either too rapidly progressive or they might not be able to maintain their capacity through the whole process. And in that case, we look for other ways to address suffering.
CHAKRABARTI: This is On Point listener Bill of Arizona, who left us a message talking about his wife’s passing this past February.
BILL: Sunday morning with my son and I over her bed. She said, Help me, please help me. Which told me that she was well aware of what was going on in her body. She passed away the next day at 4:25 in the afternoon. I just don’t believe that it was right that she had to suffer through this struggling that could have been greatly eased with medical aid in dying. My beautiful wife of 53 years deserved the option to pass away peacefully with compassion and dignity. She didn’t get that.
CHAKRABARTI: Bill also told us that his wife had been suffering from terminal cancer and wanted to access medical aid in dying, but by virtue of living in Arizona could not because it is not legal there. Here’s listener Susan who left us a message from Massachusetts. Also talking about a friend who moved to Arizona and got terminal cancer. He did not want to suffer extensively, but since Arizona does not have medical aid in dying, her friend resorted to a different option.
SUSAN: He wanted to leave the world with dignity, and he said that chemotherapy made him not himself, made him lose his humanity. Unfortunately, Arizona is not a state that has physician assisted suicide, if you will. So what he did in hospice was he went on hunger strike. He did not expect to kill himself through hunger. What he was trying to do was to weaken his own body such that the cancer will spread faster and will take him sooner.
CHAKRABARTI: Diana … I wonder if in hearing these stories, and we received so many of them from listeners, that people seek medical aid in dying. Because what we’re really looking at is a failure of the hospital system. Because so many people who die in hospitals still die in pain. They died not surrounded by all of their loved ones, in an environment that they don’t find gives them peace. Would they seek medical aid in dying if the hospital experience were better?
BARNARD: Well, I always like to think about, we need lots of tools in our toolbox. We need to do many things simultaneously. And the issue of the hospital is tricky because the vast majority of patients I listen to and work with want to live. They are desperate to live. And if going to the hospital can help them live, people will go through a certain amount of burden and suffering to get to a better place.
It’s really only when people must accept that they are dying that some people want a different way of going about it and want to take some control back from the disease that has taken so much from them. This is not a process that is for everybody. I cannot emphasize that enough. The laws that are in place protect the rights of people for whom this would never be the right choice. It protects those who aren’t sure, or can’t predict what kind of suffering they may face at the end of their life. And it offers comfort for those who are interested.
CHAKRABARTI: Well, I’m struck, though, by how often one particular word is used when people were talking to us about medical aid in dying. And that’s dignity, dignity, dignity, dignity. Because dying in America can be such an undignified experience, not just for the person who’s passing away, but for everyone surrounding them, who loves them.
And so with that in mind, I want to introduce Katie Engelhart into the conversation. She’s the author of a book called The Inevitable: Dispatches on the Right to Die. And it’s based on hundreds of interviews with doctors and people seeking to end their lives, both legally and not legally. Katie, welcome to On Point.
KATIE ENGELHART: Thanks so much for having me.
CHAKRABARTI: So can you describe, you know, in a story that you reveal in the book about the lengths that some people might go to … to plan for their own deaths in the event that they become terminally ill, in places where they can’t access medical aid in dying.
ENGELHART: So my book opens with the story of a woman named Betty, who I should say I met by happenstance. I wasn’t seeking to interview her in any way. We met at a wedding. I mentioned this book that I was writing, and she kind of took me aside and said, Look, I have a really good story for you. She said, My friends and I, Betty was in her late seventies. She said, My friends and I have a pact. The first one who gets Alzheimer’s gets killed by the rest of us. And the story Betty told involved a very strange chap.
Betty was a retired lawyer. She was a Manhattan resident, sort of, you know, well put together. Definitely not a rule breaker. The story she told involved her traveling to Mexico, to a place close to Tijuana where she had heard veterinarians will sell you drugs used for euthanizing pets on the sly. And she made that trip to buy some drugs. She snuck them back over the border using some fake cosmetics bottles. And those drugs were then held in trust by her and her friends to be used when the time arrives.
So, Betty’s story interesting because first of all, she was living in New York. At the time … has no medical aid in dying law. But also she held the drugs for use in a very particular context. She worried that she would develop dementia. And that’s a fair worry because, you know, it’s a disease that past 80, afflicts a significant percentage of people. And even if medical aid in dying were legal where she lived, it most likely wouldn’t apply to someone who has Alzheimer’s.
So Betty’s story was interesting to me, in part because I just met so many people like her, people who were very afraid, who wanted to be in control at the end of their lives and who were going through these elaborate kind of plans to get access to drugs, including buying drugs on the Internet, traveling to Mexico or Brazil, including, you know, kind of playing pharmacists and mixing various medications or substances that they read about online. This is not uncommon. I was actually shocked to see just how many people are making plans on their own terms in the absence of a law that leaves them feeling safe and prepared.
CHAKRABARTI: And so why do you think that is? Is it because of their fear of how they might end up dying?
ENGELHART: I think it’s a few things. I think … what do we know about the end of life in the United States? We know it’s a time of great medical intervention when it shouldn’t be. About a third of American health care costs are spent on people at the last year of their lives. And that means that people at the end of their lives are going in and out of hospital. They’re receiving high level interventions, which ultimately, in many cases are futile. And people know that. How many of us have watched a parent or grandparent die in a way that was kind of confusing, overly medicalized?
Didn’t quite feel dignified, didn’t quite feel like anything we had control over. I mean, I think a lot of us have watched bad deaths. And by bad deaths, I sort of mean normal deaths. And then I think, you know, there’s also other kind of cultural explanations. People have pointed to the fact that baby boomers as a stereotypical quality, you know, they’re used to being in control. They have resources to get what they want. And they’re the cohort that’s coming up to advanced age and they are looking for something else.
CHAKRABARTI: Well, so we’re going to talk a little bit more about who is able to access medical aid in dying in the states where they can. But, Katie, since you brought up dementia and Alzheimer’s, this is a really major aspect of the current questions over medical aid in dying in states where it’s still where it’s being debated. And it’s fascinating to me because in 1990, the first patient to request that Dr. Jack Kevorkian aid her in ending her life was Janet Adkins, who’s that Oregon teacher who had early Alzheimer’s.
And so she was the first patient who he assisted with her suicide. She was mentally competent at the time, but she had early Alzheimer’s. And decades later, actually, in the process of preparing for this show, we got another call from an Oregonian. This is Andrew of Portland, Oregon. And he says he’s seen many family members and older friends suffer from Alzheimer’s and dementia. And he says he does not want that same fate.
ANDREW: And I’ve seen not only the pain and suffering it causes them as their mental wellness degrades, but also the people that care about them. There are burdens on their finances. There are burdens on their mental health, and there are just physical burdens from caring for them. I would never wish that upon anybody, and I’ve already communicated to my family that if I should get dementia or Alzheimer’s, I don’t want to put them through that and will end my life with medical aid.
Except in Oregon, he can’t. Because in 1997, Oregon became the first state to pass medical aid in dying. But its Death with Dignity Act does not allow for patients with Alzheimer’s or dementia diagnoses to choose that option. Dr. Barnard, let me turn back to you here. Is that also true in Vermont? And how does this this huge specter, this looming specter of perhaps tens of millions of Americans that may receive an Alzheimer’s or dementia diagnosis factor into the ongoing debate over medical aid in dying?
BARNARD: Yeah, Thanks for that question, Meghna. We need to remember that death is universal, and it will happen to all of us. And our society isn’t very open to accepting that and talking about the tough things you mentioned earlier that perhaps part of the problem is what happens when people end up in the hospital and have an over medicalized experience in the setting of serious illness. Another way to look at that is that we are where we are because of the successes in medicine, we have helped prevent deaths from accidents or infectious diseases.
We have helped people live through strokes or survive heart attacks. And what’s happened is that we are saving lives and prolonging life. But what happens is that the longer you live, the more likely it is that the final phase of your life will be complicated by cognitive impairment or by weakness, or your ability to really live life on your own terms. And so we’ve kind of created a challenge. And now you’re hearing patients and people asking of the medical system to meet those challenges.
CHAKRABARTI: So to be clear, for most of the medical aid in dying laws in states, it has to happen when you receive a terminal diagnosis. And you have to have a very finite period of time left to live according to what the prognosis is. That is not how dementia or Alzheimer’s works. And so, Katie, you talked about Betty in New York and her pact, and they would assist each other in dying when they knew the time had come. How would they know the time had come if they received an Alzheimer’s diagnosis and could still potentially have many years of life ahead of them?
ENGELHART: I think this is the big kind of unspoken subject within right to die advocacy in the United States. There is no American state that allows medical aid in dying for people primarily who have dementia. And there’s no advocacy group, no major advocacy group that’s asking for it. But the situation is very different in other countries. So I spent some time in Belgium and the Netherlands. The Netherlands in particular does allow assisted death for people with dementia, but it’s very tricky.
So, you know, let’s compare those two countries. In Belgium, you can have an assisted death for dementia, but only if you retain mental capacity to make the choice for yourself. You have to be able to know what you want and ask for it on the day. This effectively means that you can get an assisted death only in the very early stages. Potentially you have many years of life ahead of you and potentially even some good years of life ahead of you. You make the decision early on and people do it because they’re afraid of going so far and then losing their chance.
In the Netherlands, a person can write a kind of advance directive. They can say, when I get to such and such a stage, say I can’t take care of myself and I don’t recognize my husband, I would like to receive assisted death. But that’s tricky too, because it’s asking an awful lot of physicians. It is asking a physician to give a lethal injection to someone who at the time maybe has no idea that her death is coming, that she ever asked for it.
Who might, in fact, at the time be living a sort of content happy life without, you know, most of her long-term memories. So there’s no sort of easy way to do it. But I will say that when I spoke to people, you know, in the states where aid in dying was and was not legal, I mean, dementia was the thing that everyone raised, that everyone was afraid of. So I do think there’s this kind of gap between what people who want assisted death to be legalized are asking for and kind of what the major advocacy groups and lawmakers who supported are prepared to discuss.
CHAKRABARTI: It’s such a challenging and nuanced illness. Because it has to do with sense of self, with memory. How does one decide for themselves that the time is right if they’re not, you know, necessarily capable of doing so because they don’t retain the memories of the life they had? I mean, Dr. Barnard, let me lean on your experience as a hospice physician as well, because as far as I know, in the United States, people with Alzheimer’s or dementia diagnoses early on, while they’re still mentally competent, can sign advance medical directives.
Regarding that maybe in the end stages of their dementia, they wouldn’t want a feeding tube or a ventilator or dialysis or those very sort of well-defined hospital interventions to extend life. So someone would have to follow that directive and turn off the machines. How is that different from perhaps signing a medical aid in dying consent form while still mentally competent and having a physician then administer the life ending drugs at the end of the person with dementia’s life? Dr. Barnard.
BARNARD: There’s so much there to unpack. And I do feel the need to say that what we’re talking about is what I like to call a rainbow of experiences. There are people living with dementia. There are people caring for loved ones with dementia whose life looks very different than it did, who still find meaning and want to prolong life. And we support that as a society, as a medical system.
Certainly, as a palliative care physician, I’m listening deeply to individual values and supporting that. There are other people on the other end of the rainbow, as I like to say, who find the concept of losing control and losing their mental abilities to be one of the most frightening things. And no doubt for those people, medical aid in dying is not the answer. Medical aid in dying is a balance of safeguards, to be sure. It’s driven by the patient and voluntary. And it has some barriers, because not everyone who would like to access it can. And so this is a balancing act that we need to address going forward.
CHAKRABARTI: This is listener Jessica Simon, who called us from Maryland.
SIMON: I have a 72-year-old father with Parkinson’s who would very much like to have control over his death. We live in Maryland, very close to Washington, D.C., and we have been discussing for months whether or not I should move him into Washington, D.C., where they have a death with dignity act so that he can then have more control over how things go in the last year of his life.
So Washington, D.C. and ten states are currently the 11 jurisdictions in the United States that allow for medical aid in dying. Many other states are considering similar legislation right now. And of the ten states that passed the laws, many of them were quite recent. So why the sudden uptick over the past five years? Well, Kim Callinan is the president and CEO of Compassion & Choices. It’s an advocacy group for expanding end of life options. And she says one of the biggest changes that happened in recent years is a shift in the medical community itself.
KIM CALLINAN: So back in 2015, most of the medical societies had oppositional policies around medical aid in dying. And I think we’re up around 30 or so national and state medical societies that have dropped their opposition and then also increased support among individual doctors, as well.
And that’s made a huge difference. And that comes because individuals are putting pressure on their own doctors, are asking questions, are wanting this as an option. And the medical societies and doctors are starting to recognize that people see this as a fundamental part of the treatment options that they want available to them at the end of life.
CHAKRABATI: So, Dr. Barnard, help us understand this because, of course, in the most rudimentary sense, the ultimate violation of the do no harm oath is to prescribe medication that can help end someone’s life. So how did this shift happen in, you know, the thinking or in many of the medical societies in this country?
BARNARD: Well, I think even that statement do no harm. Looks very complicated in the middle of a modern medical system that in fact, can sometimes do harm to patients by offering them treatments and prolonging their lives in a state that has lost much of its meaning.
… It’s because medicine is changing. And patients, as you heard from Kim and as you heard from Katie, patients are really the ones who are driving this, who are surprised by how complicated medical care gets toward the end of life, and that their basic wishes of wanting to be comfortable and wanting to be at home are harder to achieve than they ever imagined. And so they’re the ones that are really driving this movement.
CHAKRABARTI: Katie, let me ask you about that, because I wonder how you were able to explore this issue in in your book, The Inevitable, because, you know, doctors are trained, understandably, to find ways to keep people alive. Ideally, to keep them healthy and alive. But, you know, you’re always presented initially with options of we can do A, B and C, don’t know, can’t guarantee the outcomes, but these are the options that we have. Did you talk to physicians in terms of how they grapple with the thinking around one of the options could potentially be medical aid in dying?
ENGELHART: You know, I spoke with a lot of palliative care physicians, and they are people who, you know, kind of specialize in comfort care. They do a lot of end-of-life care, but not exclusively. And what was interesting is at the beginning, you know, when Oregon first passed its law in the ’90s, the palliative care physician community was, by and large, very against the legislation. And when I spoke with doctors, they usually said some something along the lines of, look, I’m good at what I do. I know how to alleviate pain and suffering.
Like, we can help people to live kind of pain free death … lives until the very end. But eventually, I think palliative care physicians came around. And they started to see medical aid in dying, not as this complete separate radical thing, but as just sort of, you know, one step further along the spectrum of the care that they already offered. You know, palliative care physicians already do things like, you know, administer drugs that have a sedating effect on people at the ends of their lives.
So a patient might sort of be drifting in and out of sleep and then be sleeping and then kind of die eventually of kidney failure or whatever it is after a few days of slumber. I mean, physicians already do things that sort of hasten death or hasten a person’s final awake and conscious hours.
So these physicians started to see it as just another step on that path. I do think what helped is that Oregon was very good about collecting data. So, you know, at the beginning there was a lot of fear that people who were poor, people from minority or immigrant communities would be sort of coerced into hastening their deaths for socioeconomic reasons. Because they didn’t want to be a burden, because they couldn’t afford better care. And what we started seeing from Oregon was that really wasn’t true.
… It was the exact opposite. The average person who, you know, chooses medical aid in dying in Oregon is, you know, over 60 educated, white, insured. And so we weren’t sort of seeing what physicians feared most. And I think that really helped people. Is that kind of data collection.
And what we saw from Oregon was that by and large, patients were not choosing assisted death because they were in pain, because they were physically suffering for lack of good medical care. They were choosing it for more existential reasons. They wanted to maintain autonomy. They didn’t want to sort of be physically dependent on caregivers. They didn’t want to live if they couldn’t do things that they enjoyed. I think that really helped to bring doctors around.
CHAKRABARTI: Well, so with even with all these changes, and this uptake in the past five years in the number of states that allow it, there are still, what, 80% of states that that do not. Vermont just recently, you know, lifted its residency requirement to access medical aid in dying. But, you know, it’s a little challenging.
You can imagine the challenges in doing so if you’re also terminally ill and at the end of your life. So with that in mind, I want to share a story with both of you. It’s about Youssef Cohen. He was 64 years old when he was diagnosed with mesothelioma, a form of lung cancer, and he was given just a year and a half to live. He tried chemo, radiation surgery, clinical trials. Nothing really worked. He was not going to beat his diagnosis.
YOUSSEF COHEN: Modern medicine is a mixed blessing. In some cases, it’s great. It saves people. In other cases, it just keeps people alive for no reason. Just torture. It’s just torture.
CHAKRABARTI: So that’s Youssef from a 2016 video recording that he made just four years after his diagnosis. He was wanting to die on his own terms, but he lived in New York City, which doesn’t allow medical aid in dying. But that wasn’t going to stop him.
COHEN: … It’s choosing how you want to die. And this seems to me a much more humane way of dying.
CHAKRABARTI: And Youssef’s wife Lindsay Wright was there to help him do it.
LINDSAY WRIGHT: He really wanted control over how he died. Mesothelioma attacks the lining of the lungs, so that eventually you can’t breathe in and out.
And you’ll suffocate to death. And he didn’t want to suffocate. He didn’t want us to watch him suffer. He didn’t want to suffer. And so he had researched what his options might be. And we learned about medical aid in dying legislation in Oregon. So we started making phone calls, looking into what we could do, and got enough information and did the research to figure out that we would have to go through a number of steps, including establishing residency and how we would do that. It took a lot of research. And then figuring out how we would transfer medical documents when the time came to do so.
So in early March of 2016, we knew because his cancer had come back that his time was limited, and we needed to hurry. And we flew out to Oregon in early March and sublet an apartment, established residency in Oregon with his lease the same day and we flew back. I was instantly on the phone calling random lung cancer physicians, trying to identify somebody who could take him on as a patient. You know, I was really struggling. They were giving us appointments three weeks beyond the date that we would be arriving. We’re arriving on a Thursday night, and we needed an appointment that Friday.
So I ended up having a physician friend of mine here in New York City, call this physician in Oregon to beg him to see us the day after we arrived. We met with that physician. My husband made his first request for medical aid in dying medication. Oregon at the time required a 15-day waiting period, and you had to wait for 15 days to ask again. So we saw the physician for the first time on a Friday, and by Monday it was clear that Youssef was really struggling to breathe.
Within a couple of days, he was no longer eating and that’s when it became clear that his body was shutting down. And we talked about it. He said, I’m dying. I’m not going to make it. I’m not going to make it in time to get the medication. And when the doctor tells you … you have three months or less to live, you hear the three months, you don’t hear the less.
He did suffer. He did not want to die of suffocation. Nobody wants to die of suffocation. And I think … sort of, you know, the anguish of trying so desperately to have some control over how he was dying also was a type of mental suffering. And, of course, you blame yourself for not making the move sooner. You know, if only. If only. If only. If only if we had stayed when we first got to Oregon three weeks earlier, if only we had sort of made all of these arrangements sooner.
He died before he could access medical aid in dying, in this anonymous sublet apartment. … He would have preferred to do that in New York City, at home in New York City, surrounded by friends and family. And so while this was an option that he wanted to move, to go to another state where he could then control … and make a decision over when his life would end. I mean, it’s certainly not the death that he would have wanted. He would have wanted to have that option in New York state.
That was Lindsay Wright. Her husband Youssef Cohen died on March 31, 2016. Now, it was six years later in March of 2022 that Oregon lifted its residency requirements to access medical aid in dying. Now, as we’ve been talking about all hour, there’s been a sharp uptake in the past few years in the number of states that offer medical aid in dying, but most states still do not.
In California, where the law currently exists, there’s also pushback against medical aid in dying. And it comes from the disability community there, because last month, disability rights advocates filed suit against California’s End of Life Options Act. And the lawsuit includes the United Spinal Association, who claim that California’s law, quote, unlawfully discriminates by steering people with terminal disabilities towards physician assisted suicide. Here’s lawyer Michael Bien.
MICHAEL BIEN: We perceive people with disabilities sometimes as suffering, suffering with their disability. That’s not how my clients want to be perceived. They want to have equal access and opportunities to a free and independent life. And in this system, which has so much bias built into it, this particular policy where there are barriers to the other, quote, options, like palliative care, hospice care, home health care … not easy to obtain and long wait lists. To say that the patient can voluntarily choose to commit suicide is cynical. And simply a dangerous, dangerous policy.
CHAKRABARTI: Dr. Barnard, I wonder how you respond to that, because, again, plaintiffs in this California lawsuit say that in California, you may have to wait months to get a wheelchair or adequate housing or other types of assistance that might help you live a happier life. But you only have to wait 48 hours in order to get medicines that might end your life. And that essentially produces a two-tiered medical system, they say.
BARNARD: Well, you know, I would say there’s an ‘and’ statement here. We need more palliative care. We need more support for people living with disabilities. We need more hospice and better and more robust hospice. And we are talking about a different population of people. There is absolutely no evidence that any coercion has happened or that the lives of people living with disabilities are any less valued because of medical aid in dying laws. We are talking about people who are dying and who want to make their own deeply personal decision about maintaining some control over having to accept that their life is coming to an end.
CHAKRABARTI: Well, Katie, I’m going to give you the last word here today. Even though 80% of states still don’t have such laws on the books. Do you see the momentum continuing in terms of the law catching up to relatively high public approval rates for accessing medical aid in dying?
ENGELHART: I do. And I think it comes down to, you know, the point I made earlier, which is that the nightmare scenarios have not played out. I remember coming across an article, I think, in the New York Times just before the Oregon law was passed, and the writer imagined elderly people being driven to the Oregon border and kind of dumped over the border for assisted death.
And it just didn’t happen. From what we know from the data, it’s still very hard to obtain. You have to really want it. You have to be a person who is able to be proactive and navigate the medical system, as some of your listeners have pointed out. And that the law has remained really limited. And I think that helps other state legislators because they can say, look at Oregon. This has been contained. The slippery slope has not, you know, appeared before us and it’s safe for us to proceed.
This article was originally published on WBUR.org.
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