The Right to Die Movement: An Encore Discussion

Hello and welcome to the Living to 100 Club podcast and another premium episode. Thanks to all of our dedicated listeners for tuning in. I'm your host, Dr. Joe Casciani, and here's today's episode. Greetings to our listeners. You're listening to one of our premium episodes on the Living to 100 Club, and I'm your host, Joe Casciani. Each week, our conversations educate and inspire, helping you get the best out of all the years we are given, regardless of what obstacles come our way. Thank you for being a subscriber. Your support allows us to continue this mission without sponsors. We hope you're receiving value from every conversation with our experts, presumably much greater value than the price of a subscription. This is an encore guest appearance by Dr. Faye Gersh. Faye was one of our early guests back in 2019 when she spoke about preparing for a peaceful death. As a former president of the Hemlock Society, Dr. Gersh is one of the preeminent authorities on the right-to-die movement. In this podcast, we continue with this right-to-die discussion and specifically address the question of when we would be ready to have our life end. How would we talk about this with our closest family and friends about our decisions? These are tough, thorny subjects, and our guest is one of the foremost professionals to tackle these. First, a little background. Faye Gersh was president of the Hemlock Society USA from 1996 to 2004. Following its founder, Derek Humphrey. Concurrent with this national position, she began the Hemlock Society of San Diego in 1987 and was its president for 22 years. Faye was also president of the World Federation of Right-to-Die Societies and currently serves as a board member. She initiated the Caring Friends Program, which eventually became the Final Exit Network. In 2003, she was awarded Hemlock's Lifetime Achievement Award. Dr. Gersh received her doctorate in human development from Harvard University. For 18 years, she practiced as a clinical and forensic psychologist in San Diego. She has lectured extensively in the US and abroad and has appeared extensively on radio and TV. Faye, welcome to our program today.

Thank you, Joe. I really appreciate you doing this. Because I know your listeners and you are talking about longevity, and I'm suggesting that maybe longevity is not everything.

Yes.

That quality of life is important, and that if people feel that their quality of life is gone, that they've had a satisfying life, that they're suffering a lot because of their illness.

Yeah.

Then maybe they would want to end it. And I think your listeners need to know that too.

Yeah. No, that's such an important qualifier. It's not just as we've said, just existing. It's really having a life with some quality. And there we reach a point when that quality is diminished, right? And we can start looking at decisions. Should I, you know, look at the end of my life rather than prolonging it indefinitely? So, um, welcome to our program, and I'm really glad to have this conversation. Tell us what got you into this right-to-die movement. What were the early experiences you had?

Well, I have to say I was fortunate not to have personal experiences.

Mm-hmm.

I probably did actually. My parents probably did not have a good death, but I didn't know much about it then. And I know my first husband did not have a good death, but he wanted to try everything. He was a doctor and he had this prolonged, some version of leukemia or something like that. And every time anybody came into his room, his hospital room and said, we have a new treatment for you, he went for it. And he finally died in the emergency room trying every new treatment. It was a very difficult death, but I don't think he would have wanted to end his life prematurely. Anyway, I got involved in 1983 in a case. Elizabeth Bouvier was a quadriplegic woman who, 28 years old, who was in a lot of pain, admitted herself to Riverside Hospital and decided to stop eating and drinking and die that way. But in 1983, that was not a right that Americans have. We have it now.

Mm-hmm.

That took a court case. Another young woman, actually, uh, 1980, 1990. Anyway, I was sent to evaluate Elizabeth because I was a clinical and forensic psychologist. I evaluated her to see if she had all her marbles, if she was depressed, if there was something other than killing her, letting her die, that could be done for her. But she was determined. She was in a great deal of pain. She was almost totally immobile except for one finger, which she could push her wheelchair around. And she was very serious about it. But the courts, when she finally went to court, would not change the law to permit the hospital to stop eating, feeding, and hydrating her. She won the appeal 3 years later. By that time, she was out of the hospital and she didn't want to die that way. That would have been very painful for her. And it is a difficult way to die, although many people do it, refuse, stop eating and drinking. We call, he said, voluntarily stopping eating and drinking. And there are many books now written on how to do that and what it's like and that kind of thing and how to make it legal if somebody is helping you do it.

Mm-hmm. Mm-hmm.

So I got involved in, it was 1983, 1986. I called a big conference here sponsored by the medical school at UCSD and the Bar Association and the ACLU of Southern California and San Diego. And we had a number of speakers, pro and con. And the speaker that most impressed me was Derek Humphrey, who had started the Hemlock Society 6 years before.

Wow.

And talked about helping his wife die and talked about the fact that we should have medical assistance in dying. And I was so impressed with that because I thought if you wanted to die, just jump off a balcony somewhere. Jump under a train and just do it and don't involve the law in that. No, he said, no, you should come into the world gently and with welcoming, and you should leave the world the same way, and you should have a gentle, peaceful death, not a violent death.

Makes sense. Yeah.

Yes, it does. So Derek's still around, still preaching the same gospel. So am I, and so are a lot of hemlock people.

Yeah. So you started the San Diego chapter. Shortly after that.

Audio chapters. Yeah. It's 36 years old now.

Mm-hmm.

Going at this for 36 years. Mm-hmm.

So it's still a difficult subject. We've made a lot of progress and it is just a little bit easier to discuss for individuals and families, but still reluctance, right? If someone talked to me about, I remember he described talking about death, it's the same as looking at the sun. It's very hard to do. And we still have that resistance, reluctance. It's, um, obviously it's a very thorny subject.

So, I mean, I've discussed it with my children who are wonderful, and they're coming my big birthday. Yeah, next week, and we'll discuss it again. But we have discussed it over wonderful times.

Role model, sure. Yeah, yeah.

And, uh, but if you were to bring this up suddenly with your family, they would say, oh no, Joe, no, no, no. You don't want to end your life, cut your life short. No, you still have many years to live. And you would explain that you're suffering. And I don't know, I'm just making this up.

Sure.

And you have this terrible illness and chronic pain or whatever, and you feel like also that you're losing your marbles and you've been diagnosed with some kind of dementia. You explain that to your family, and that might be a different story. But you really do need to explain that you want this and why you want this.

Yeah. To communicate our wishes. That's the number one ingredient here, I think. Right?

I mean, and then you need to appoint somebody.

Yeah.

Maybe a family member, maybe not.

Mm-hmm.

To be on hand if somebody needs to find out what your wishes are and you can't speak for yourself.

Mm-hmm.

That person should know what your wishes are, not, not his or her wishes, but yours, and make sure they're carried out. So you need somebody who's fairly assertive.

Mm-hmm.

And fairly confident that these are your wishes.

That's the surrogate decision maker who's informed about what my wishes are, what one's wishes are. Sure.

And that's written down in your advance directive.

Yeah. Yeah.

And gives that person the legal status of a surrogate. And the second surrogate decision maker is very important too, in case the first one is out of town. But not co-decision makers. That doesn't work out very well. But successive decision makers.

So there are options available now, and as we discussed, there are several states that have these medical aid, medical assistance in dying. Uh, what's that like? What you said, 10 states, I think, have these laws.

10 states and the District of Columbia now have these laws. That might be different next month because there are laws pending in Massachusetts and New York and several other places. New Mexico is the latest state to pass a law. But they're basically all the same. And that is, and I have to say, I particularly object to these criteria, which were very good in 2007, but are no longer helpful. So you have to have two doctors to agree that you have 6 months or less to live due to an underlying physical disease, and that you are able to swallow, able to ingest medication. That will essentially put you to sleep and that you're mentally competent at the time you're requesting aid in dying. And also you will be mentally competent when you get aid in dying. So that's considered medical aid in dying because the main doctor can prescribe a medication or a combination of medication for you that you take, and then you peacefully fall asleep. And it works fine. It just works for a very few people because Many people who are ready to die do not have a terminal illness.

Mm-hmm.

And are not necessarily cognitively present and also are not able to ingest.

Yeah.

So those things restrict the kind of people who can take, use the law.

Yeah. A lot of criteria. It's a high bar to get over, right? And that's in only 10 states. So although it's progress, we have a ways to go, don't we?

We sure do.

Yeah.

Even states like New York don't have this law yet. Mm-hmm. It's a tough sell. And the law that I would like is a tougher sell. I would like it extended to people. The 6-month criteria to me is irrelevant.

Sure.

Depends whether you're suffering or how much you're suffering and what kind of disease you have and depends on a lot of other factors.

We never know about the 6 months also, right?

No.

So there are other options, like if we refuse to take in any nourishment or hydration, we can end our life that way?

Yes. Well, Jimmy Carter's doing this and he is not, not, not doing that, but he said no more treatment.

Right.

It is, um, it's very important to decide when you've had enough treatment and whether you just want comfort care only. And that's apparently what he's getting through hospice. That means, I mean, does not mean that he's gonna have a peaceful death. It doesn't. Because hospice can't fix everything that's wrong with a person. He still might be in a fair amount of pain.

Sure.

He might be. I don't know what he has. He might be short of breath. He would still be immobile if he couldn't walk before. They're not going to help him walk. If he can't speak, hospice can't help him with a lot of these things. His death could still be very difficult, but hospice will make it better. But hospice is not home healthcare. Hospice may drop in 1 or 2 hours a week.

Mm-hmm.

Help get him a hospital bed, may help with bathing, but he'll still probably need caregivers and that's expensive and difficult.

Yeah. I have a lot of respect for someone who recognizes that I don't want any further aggressive medical treatment to keep me alive. I wanna be kept comfortable and free of as much pain as possible, but I don't wanna go back into the hospital. I think there are a lot of people who don't know they have that right to refuse treatment. I mean, this is really separate from the right to die, but if someone doesn't want to go back to the ER, he or she's been to the ER, urgent care several times, and it's just so uncomfortable, so difficult, they can refuse that treatment, right?

I mean, absolutely.

Yes.

And they can refuse to be resuscitated if they pass out and their heart stops.

Mm-hmm.

And that's a DNR order. That's an, that's an order.

Mm-hmm.

It's not something you say on the way to passing out on the floor because— Yeah, sure, sure.

And that's, that's recorded in other documents, maybe legal documents. But again, the notion that the neighbor says, oh, I want to bring you to the ER. You fallen again and you keep falling. Anyway, a person can refuse that treatment, right? Yeah.

Yes. They may need something, you know, they may have fallen and broken a hip. Or an ankle or something like that, or gotten bruised. And then they have to— I mean, somebody's got to make sure they have some kind of care. It may not be life-sustaining care, it may not be care that keeps them alive, but care that keeps them comfortable.

Yeah, for an acute condition that's treatable, say. And, uh, I mean, it's the whole idea that I think Western medicine puts the emphasis on continuing to treat and hospitalize and do more surgeries and regardless of what the individual's wishes are. And it's so important to make those wishes known, right?

Well, there are lawyers and there are organizations that will come to your defense if your advanced directive or your POLST or your surrogate's wishes are being ignored.

Hmm.

Final Exit Network has such a person that will intervene and a hospital can lose a lot of money in lawsuits. By going against your wishes. But it happens, happens all the time.

So the question of when would a person know when he or she is ready to die, and how do they know that? I mean, how do they make rational, informed decision about, I think it's time that my life ends?

I think Hamlet was dealing with that question. To be, not to be, and when not to be.

Yeah.

Why not to be? And, uh, it's a very difficult question. The law says The only way you can get help is if you, two doctors agree that you have 6 months or less to live. There's nothing in our law that says you're suffering. Nothing.

That doesn't count.

6 months or less to live. But for some people, unbearable suffering is the criteria for them. What we saw in, we've seen in Oregon and Washington and places that had the medical aid in dying law for a long time now is that people decide to use the law when their quality of life has essentially disappeared, when they cannot do the activities that gave them enjoyment, when they feel that they've lost autonomy. And that's very interesting. It's not— pain is like number 5 reason to use the law, not number 1 at all, even though we think of excruciating pain. And when Governor Newsom signed our medical aid in dying law, End of Life Option Act, in California, that's what he said. Said, if I find myself in pain, yes, that's right. But also, if you find yourself unable to do the things that gave your life pleasure, you might also want to end it if two doctors agree that you have six months to live. If they don't agree, there are other ways to end your life. There are books like Final Exit by Derek Humphreys.

Right.

There are organizations in Switzerland that will help. It's complicated. It costs $10,000. And you have to get there and you have to stay there for a while, a couple of days, but it's a very good way to die.

Yeah.

Peaceful.

There are other options. Where does depression come into the picture and should that be a factor? I mean, we used to talk about being, you know, evaluated by a psychiatrist or psychologist to make sure that depression is not contributing to that decision. That's, that's really hard to tease out, isn't it? I mean, it is.

And our law does say that our law says if either doctor who is examining you for the 6-month criteria and the competence criteria feels that you have some psychological problems like depression, and they refer you to a licensed psychiatrist or psychologist for evaluation, and you could get such an evaluation that you would have to do yourself. And you could look for the history of depression, look for history of suicidal attempts, and then deny this person. The right to a peaceful death because they have a history of depression. I don't think that's right. The case that I was involved in that started my whole career, I evaluated her for depression. She was a quadriplegic woman, 28 years old. She has a right to be depressed. And I didn't find any symptoms of depression of our whole DSM-III list, or III at the time. And neither did the court and neither did any psychiatrist. But if you look on Not Dead Yet, That's an organization that's opposed to assisted dying. They still say that Elizabeth Bouvier was depressed and that I and other psychiatrists, uh, other mental health people missed it. That's not true.

Yeah.

Even if she were temporarily depressed because she was quadriplegic at 28, that's not a reason to deny her aid in dying, but there was no aid in dying back in 1983. So that wasn't an option for her.

So Not Dead Yet is an organization, um, opposing The right to die?

Yes. Yeah, mostly made up of disabled people, but not necessarily. I encountered them first in front of the Supreme Court in 2007 when they heard the appeal. Long story there. They heard an appeal from the Second and Ninth Circuit Courts of Appeal, Second and Ninth Circuit Courts, both agreeing that assisted dying was a constitutional right. When— and then when they heard the appeal was in January 2007. The not dead yet people were out there in their wheelchairs and stuff. It's our Hemlock people, and I was very proud of them. Yeah, again, many times opposite sides of the same coin, I think, right? Yeah, I mean, it's ironic because many disabled people want the right, same as able-bodied people, to die when they, uh, meet the criteria.

Yeah, of course. Yeah, so the person that has made this decision, I think it's ready to die based on all the factors involved. They've weighed their decision carefully. And how does he go about communicating this to other people? And do the family members, adult children, do they accept it or do they dispute it or fight it, oppose it? How does he convey this wish?

Well, she, uh, she's likely the outlet. He should start like today, talking to their kid, making up their minds themselves. You know, when is it time? Under what circumstances would they like their lives to end? And how would they like their lives to end? And for me, it's dementia, especially dementia. And I've discussed this with my children. And I, when I first talked to my son, uh, told my son about it, I said, if I'm demented, shoot me. Well, of course I can't ask him to shoot me. But I can ask him to take me somewhere and not feed and hydrate me for a while. And I can sign a paper to that effect. That's how I want to die. Or take me to Switzerland or something, but don't let me live in a demented state, which other people would not have any problem with. I just have a problem with it. A lot of people do. If you lose your personhood, then you lose your being. And that's how I feel. And some people very happy just playing checkers or doing jigsaw puzzles for the rest of their lives and needing medical care. And we have a very nice memory unit in a place where I live in my retirement community, and I might be happy to die there too, but I prefer not to.

So yeah, when we know that any further treatment is not going to reverse the condition and make it any better. So that's where we can come to this, plant a flag in the ground and say, I think it's time.

Yeah, and discuss with your kids, you know, you don't know what you're going to die of and you don't know what terrible thing is going to befall you. So talk to them about and show them your advance directive and probably appoint one of them to be your surrogate decision maker.

Yeah.

And then if you're coming up to like a year to live and you have filled out a POLST, Physicians' Orders for Life-Sustaining Treatment, share that with your family and just prepare them for the fact that you don't want to live forever. I think Jimmy Carter's family is prepared for that. Barbara Bush's family was prepared for that. They just refused further medical treatment and they may have stopped eating and drinking too. I, I don't know. Sometimes that's helpful. And if you have hospice care, that doesn't guarantee that you're going to be pain-free or that you're going to not have shortness of breath or that you're going to suddenly walk again when you couldn't do it before. So you had to be prepared, even with hospice care, to tell hospice that you do not want to continue to live. And sometimes they can do something about that with terminal sedation. If you have a merciful hospice that will do that, that is, a doctor will give you enough medication to end your life, essentially. And sometimes consulting you, sometimes requesting at your request, and sometimes not.

Yeah.

It'll just stop your life.

That's such an important point to communicate to our surrogate decision makers and to everyone that's close to us. So they know what our wishes are, what our desires are. We don't want to be resuscitated. We don't want to have major surgery or whatever. That's really critical to communicate so these decision makers can convey that to the doctors, hospitals, whatever.

The best thing to do is start talking to your doctor right now and say to your doctor, if I am eligible, would you help me with the End of Life Option Act? And if your doctor gets up and storms out of the room, it's probably not a good idea. We used to tell it when we would say to the doctor, this is my advance directive, could you follow it? And some doctors would even storm out of the room then. But if your doctor says, well, I don't know what my policy of my hospital is. Be a good idea if they found out. I'm at Scripps and I don't know what their policy is. I know at Kaiser there will be a doctor to help you use the End of Life Option Act if you're eligible, and they will pay for the medication, pay for, of course, your doctor's fees. At UCSD, there will be a doctor. It's a little more complicated. At Scripps, I just don't know. So you really should find out what your hospitals and your doctor's policies are about this. And also your hospices. Some hospices will make sure that you can use the End of Life Option Act if you want it. Some will make sure that you can use voluntary stopping eating and drinking, VSED, if you want to die that way. And some will not. So it's a good idea to interview a hospice before you hire them. And there are lots and lots of hospices in San Diego. I'm sorry to say there was a big exposé about hospices in The New Yorker in October, I think.

Yeah, I saw that. Mm-hmm.

That was shocking.

Yeah.

Shocking that there was so much corruption and that not every hospice is, uh, pure.

So, uh, you mentioned the POLST and the advance directive. So these are different legal, well, documents anywhere where we can specify what our wishes are and we can get as specific as we want to be without getting so philosophical, but we can get specific about what to do if and when, or when to bring in my decision maker, my surrogate. So the advanced directive and POLST and DPOA, durable power of attorney for healthcare, these are all related documents.

Yes. And of course your, your surrogate gets to speak for you when you can no longer speak for yourself.

Hmm.

So there were many times during the, um, the pandemic that surrogates were called in. They couldn't even come into the hospital, but they could speak for the patient.

Oh yeah, sure.

Unable to speak for themselves, or if you have a stroke or a heart attack, suddenly lose consciousness, then everybody should know who your surrogate decision maker is and, uh, how to find that person. And that person should know what your wishes are. That person should not be speaking from his wishes, but from your wishes.

Right. So strong recommendation to make sure we have one of these documents on file with our doctor, with our hospital, with our medical system. Wherever, somewhere.

And if we were living in a retirement community, with our retirement community.

Yeah. So I, I see where we're just about out of time. It's been a great conversation, Faye. What's the takeaway for the audience? What would you hope the listeners remember from this conversation?

To look into everything that you could have at the end of life to protect your wishes. And there's a lot of things that you can do to make sure that you have an end of life that is what you would want. That you don't have more care or less care than what you would want. To make sure that somebody, and maybe two people, are there to speak for you if you're not able to speak for yourself. Yeah.

Good advice. And a good reference would be the San Diego Hemlock Society.

Hemlock Society of San Diego website.

Mm-hmm.

And Compassion Choices website, hospices website. There's a lot of information out there. You can download a durable power of attorney for healthcare from the internet, DPOA California.

Mm-hmm.

And you can download any number of— the advanced directive can be in any form at all.

Mm-hmm.

And there's many of them out there.

They're not state-specific then, the advanced directive? No.

Well, they're state-specific, but within the state is a lot of latitude.

Okay. Gotta select. Okay. There you go. Okay. That's some great advice. So, HemlockSocietySanDiego.org.

Yes, and you can find our upcoming programs there. Our program, uh, we have a film series every other month showing Moon Manor on April 15th, which is a kick. The University Community Library, uh, Governor Drive, free. It's really a fun movie, very different.

Okay.

And then on the 21st of May, we'll have our public Zoom panel discussion on when is it time to die? The age-old question.

Well, okay. And these are all listed on, on the website. So they will be for local. Yeah. They will be.

Manor is definitely listed and the other one is not yet listed yet, but when it is, you can register for it.

Yeah. Thanks so much, Faye. This is great information and it's a difficult subject as we all know, and We need to continue to make an effort to educate people about their right to die and what options they have and the importance of communicating these wishes to others. So thank you so much for being a guest on our program.

Thank you so much for discussing this important topic.

Yeah, you're very welcome. It looks like we're out of time though. Before we wrap up, I just want to remind our listeners to visit my website, livingto100.club, sign up for my email list and download a free copy of my 9 tips to make living longer enjoyable. Finally, thanks again for being a premium club member. Your support helps us keep the program going. I believe that the messages we share each week can lift our spirits, help to stay engaged, and look forward to getting older no matter what gets in the way. Faye, thanks again so much for being a guest on our show, and people can contact you at MLSSocietySanDiego.org website if they have questions.

Yes, thank you.

Great. Okay. And thanks to everyone for tuning in. Hope to see you next time.

It's time to rethink, renew, and reimagine retirement. Hey, everybody, Jared Sylvester here, host of Retire Repurposed. Now, this podcast is about the non-financial parts of retirement, which many times can be even more challenging than the financial. We believe retirement is not the end, rather the beginning of what could be the most impactful, purposeful, and fulfilling season of a person's life. So don't retire, become repurposed. To listen now, search Retire Repurpose on your favorite podcast platform, Senior Resource, or Life Audio.