This is point of inquiry for Monday, March 28, 2016.
Hello and welcome to Point of Inquiry, a production of the Center for Inquiry. I’m your host, Lindsay Beyerstein, and my guest today is my dear friend and Newman, the author of the acclaimed new book, The Good Death and Exploration of Dying in America. I was part of a Brooklyn writer’s group that workshop this manuscript. So I had the special pleasure of watching this book come together. I’m so excited to introduce and her work to the point of inquiry audience. And welcome to the program.
Thank you very much for having me.
What motivated you to explore the landscape of death in America?
Well, about 10 years ago now, my father was dying of non Hodgkin’s lymphoma, and I took a leave of absence first from my job here in Manhattan and then ultimately quit my job in order to stay with him for the last three months of his life. And the experience was not at all what I had anticipated. And so I lived with it for about a year and a half and then decided that I would try to find out why I was so broadsided by his death. And it wasn’t just the grief. It was acceptance of the visceral challenges of caring for his body. And so I sat on it for a while and tried to reckon with it and realized that I just had to go out and do the research and learn more about it. So I became a hospice volunteer, not knowing that it would turn into a book. And eight years later, now it’s finding a home.
Did you feel bad in terms of the way that your father’s death at home turned out?
Yeah, I think I didn’t know what was coming. So I think the experience would have been difficult. Right now, the caring for him at home, the profound sense of absence that we had at the end, but really just the dying process itself was so unknown to me that I was completely unprepared. And I became really angry with my family and the hospice workers and just our culture in general for not providing me with the understanding of what death was going to be like. And I think it was it was that that most motivated me to go out and talk to other dying people to learn about why people were dying the way they were.
What was the biggest misconception that you went into the dying process with regards kind of a mediated version of death that we get of, you know, the dying person calls up in their bed, in their families circles around them and holds hands and they say that they’re sorry or tell their family members their last regrets and kind of make peace with the world. And then they close their eyes and take a last deep breath. And that’s that. And that’s really not the way people die. And if it is, it’s not the common way that people die. And having anticipated that, I felt that I would just go home and sit next to my dad and he would eat some soup and then tell me he loves me and close his eyes. And it sounds rather idealistic. But every bit of our media shows that kind of dying, whether it’s books or movies or or TV shows. And I think that’s the kind of caregiving required of getting someone to their death is not discussed, I think, because of the silence that we have about it.
I did not know what was going to happen, what kind of details to do these idealistic portrayals leave out.
Well, again, I use this word all the time that this sort of, you know, the the Peukan, the theses and the sleepless nights and Bhat, all that labor on top of the grief of knowing that this person is leaving you and not being able to do enough, not being able to stop it. Drugs maybe working some of the time. And just when you get them to a point of comfort, their bodily situation changes again. And you’ve got to search all over for new comfort.
The on and on the fact that we have no idea what absence and that person’s death is going to be like until we’ve gone through the dying experience a number of times with others.
Can you talk a bit about the hospice movement, where it came from, what its goals are?
Yeah. Hospice is brilliant. There was a woman named Cicely Saunders in the UK who had fallen in love with a Polish cancer patient in a world where she was a nurse. And a few years later, she realized that she wouldn’t commit her life to caring for dying patients who too often felt abandoned by their doctors and were left to suffer in terminal wards. And so Saunders founded Think Christophers in the UK. And this was at the same time that Elizabeth Kubler, Ross and others were discussing end of life and death and dying more prominently. The hospice movement came to the United States and I believe around 74. Ms. Unlike in the UK, it was primarily based in the home for a number of reasons, but also to accommodate the fact that so many people wanted to die at home and not in facilities. So hospice was funded by Medicare in the nineteen eighties and its requirements for enrollment are that you have six months or less to live and that you give up any curative treatment. And so that structure means that you have to acknowledge that your death is coming. And that’s a very difficult hurdle for some patients. So there’s a lot of criticism about the way that hospice continues to be structured. But the overall objective from Sicily, Saunders’, until today, over the net past several decades, is to keep patients as comfortable in their last days of life, to listen to them and to get them what they need and not to allow them to die in isolation or suffering.
Is there a religious component to the history of hospice?
Yeah, that’s a great question. I think in many places there are. You know, hospice is not monolithic. It’s a grass roots service. And so hospices tend to be imbued with the culture of its vocation. There’s not one particular ethos that is dictated from a central location. So in more religious areas, you may find hospice programs that have a very religious overtone to their conversation, to their their moral practice. And then in other locations near the urban areas, you will find that less often. But yes, indeed, hospice is run by the people who are in those cities and locations. And so you tend to see a varying dose of religious adherence in the book.
You talk about hospice movie being set on the idea that you have to go home and consciously die and do all this work too emotionally and spiritually. Caught up with your life in hospice, maybe not spiritually in the sense of, you know, an official religious teaching which said that’s kind of a religious idea in itself, but you have to have this period of reckoning at the end of your life and do this.
Absolutely. Yeah, absolutely. We call it making peace, right? Yeah. Someone’s going to go home and and make peace with their regrets and their family members, and they’re going to sit and reflect on their successes and failures. And then they’ll be ready to meet their maker. And I think that’s a very paternalistic, religion inflected concept. Many patients just don’t need that. They’ve lived good lives and they’re really satisfied. And there are other patients who simply don’t want to acknowledge that they’re dying. They don’t want the hospice experience at all. And I think you see that more among younger people who are dying, say, before the age of 50 or 60, are willing to fight until the last minute. And they have a greater sense of hope and challenge within them. But, you know, there there’s a generation of elders that we’re facing right now who really don’t want to discuss hospice dying and even aging are shamed. And so the hospice experience, as it is, you know, discussed on the national level of this idea of taking to your bed and making peace with the world before leaving it. It’s not for everyone.
Do you think the emphasis on that kind of last work makes hospice less comfortable with things like assisted suicide?
Yeah. You know, in my mind and all the research that I’ve done, I find that the two tend to go hand-in-hand. And yet those who oppose it in dying would like to hold up hospice as an alternative. It doesn’t quite work that way. We’ve seen in states where aid and dying have been legalized that the hospice movement and other efforts to increase end-of-life, awareness and autonomy and like living wills or advanced directives, their use is increased when the public at large in these cases at the state level have an extended conversation about the dying experience. And then we see, you know, more people using. Hospice and having longer stays in hospice. So I don’t think one preempt the other. In fact, in Oregon, I believe a majority of the patients who ever used aid and dying were hospice enrollees. So I think the two go together. The misunderstanding that they can’t go together, I think comes out of a lack of knowledge about what suffering is. Pain and suffering are not just physical, and hospice can help with some of it. But there are patients who have gone through round after round of chemotherapy and get to a point where they know what their last days or weeks will look like and they simply don’t want to go through it. They see that there are some things worse than death, and that is an extended kind of suffering that they’ve already gone through. And those are the patients that tend to want aid in dying. They don’t want to die. They lose their terminal diagnosis, but they find it preferable to the only other alternative, which would be an extended suffering.
How does aid in dying work? I know several states have laws that have legalized it. How does that process typically play out if somebody wants to make that choice?
Yeah, it’s very restrictive and very structured. The law, as it passed the end is called Death with dignity. The law, as it passed in Oregon in 94 and became active in 97 requires that patients have six months or less to live. Now, diagnoses always vary and doctors aren’t magicians. So sometimes they get it wrong. But six months or less is the window within which you can elect to use death with dignity law. It requires that the request be made by the patient in writing and orally.
There’s a waiting period in between the two, and all that does is allow a doctor to prescribe a lethal dose of medication. The patient has to fill the prescription. The patient has to take the medication themselves, or they can choose not to take it at all. So the law really just allows doctors to prescribe lethal meds. And that is pretty much the way the laws look in all the states where it’s legal today. It’s legal in Oregon and Washington. Montana passed it via a court case. So it doesn’t have quite the same restrictions surrounding it. And that was a couple of years ago. Vermont recently passed by the legislature Death with dignity bill. That looks very much like Oregon and Washington, as does California. And California pass a law just at the end of last year. So we’ve got five states now, but California is a big state. So about one in six Americans live in a place where they can access eight and dying.
What percentage of people who get the prescription actually end up using it?
Yeah, I don’t have the stats, but it’s a relatively low number. You’d be surprised how seldom it’s used either is to receive a prescription or to end one’s life. And I think after the number we’ve got so many years of study now coming out of Oregon, many people believe it’s because of the relief that just having a way out satisfies dying patients out of the fear of dying is not knowing what it’s going to be like or having gone through pain and being afraid that it’s going to be unbearable. And so having a prescription on hand then gives these patients a relief and a chance to have an option where they otherwise wouldn’t. And so we’re finding in all of the youth that it’s much lower than we would anticipate thousands. We’re not we’re not talking since 1994, you know, hundreds of thousands of people using this.
These are oral medications. Right. So in order to take advantage of a death with dignity law, you have to be physically capable of swallowing the pills on your own.
Yes, that’s exactly right. And that’s part of the problem. You know, patients who have neuromuscular challenges never know when their last day of being able to take this medication themselves is going to be. And so that’s that’s a great challenge. If you, for instance, have a lesson, you lose your ability to use your hands or to swallow or any of those disabilities or frailties can inhibit the ability to use aid in dying. And so the laws mean nothing to patients that don’t have that physical ability. Also, cognitive ability is another concern. Patients may very much want to use the aid in dying. And then will not cannot because they are no longer mentally competent.
Would you favor changing the law to allow people to have more active assistance in dying and saying, you know, I would like to be administered lethal drugs under the following conditions if I’m not competent to make that decision myself or if I’m not physically competent to execute that maneuver myself?
Yeah, it’s interesting. I’m not sure. I think in other countries we’ve seen that change. However, this countries like Belgium or Switzerland didn’t have the same very restrictive nature and of course, have a very different political climate than we do here in the United States. So I’m I think another challenge to legalization of aid in dying is that it’s going to create a slippery slope where just passing these laws will lead to calamitous and tragic events or even just loosening of access to euthanasia. But I’m not sure that’s going to happen. Doctors in this country are very concerned about how their profession is perceived. And I think it would just unless these laws are changed, it remains illegal for a doctor to change the use of lethal drugs. That said, within the medical profession, almost forever, there’s been the use of morphine, particularly to relieve suffering at the end of life of along a concept called double effect, which dates back to St.. Thomas Aquinas. And the double effect allows doctors to medicate patients to the point of unconsciousness in order to alleviate their suffering, even if that morphine ends their life because the objective is to relieve pain. The secondary objective of ending the life is acceptable. And so many, particularly lawyers who argue for the legalization of aid in dying, have used this argument to say there’s not much difference. Doctors, for the most part, I think, are afraid of being labeled as killers or people out to get rid of the vulnerable. And so they’re committed to the difference.
Can you talk a bit about your friendship with Bill, the self-proclaimed bad cripple?
An excerpt was just published yesterday at Salon. Bill and I met online. I was writing a lot about end of life care and hospice and started watching the aid and dying movement and and its push for legalization in various states. And I had posted something on my Web site that Bill and others took offense to. I really offended a number of people.
What did you say? Oh, I just said that they were using the same language as the religious right to oppose it dying.
And they got really angry. And I didn’t understand because I just didn’t know what conversation was taking place in the disability rights community against aid and dying.
And so Bill and I and others thrashed for a while in conversation online. And finally, Bill said to me, you know, let’s just get lunch sometime. And what we found was that these clashes online were very different from the relationship that we established in person. We could sit and talk about issues of autonomy and safety and acknowledge the way that the disability rights community still has, not the resources that it should.
That 25 years after the a.D.A, the disabled are still prejudiced against and it’s still very much a tragedy in their rights and access to employment, et cetera. But I could say and Bill and I could agree to disagree that autonomy is really what the disabled want. And aid in dying does not violate a patient’s autonomy at the end of life. Bill would say it does. Bill would say and have said that legalization of aid in dying just gives doctors one more way to discriminate against the disabled.
He had an experience himself where he felt like he was being pushed towards not continuing treatment, at the very least straight.
Yeah, absolutely. And, you know, he and I disagree on this as well. But I understand my able bodied privilege. I have never been in the situation, though, with him. He had an enormous bedsore on his hip. And despite his years and years of trying to avoid them, invest as best he can. And it required an intense operation that did not take him in another one. And Bill was faced with the fact that he very well may not be able to ever sit up again and was a horrible experience for him. And as he tells it in an article and on his web. Right. He was in terrible pain in the middle of the night and the doctor came in and said, I just want you to know what could happen if this operation does not work. And he told Bill, the incredible expense, the fact that there were no guarantees the bill’s functionality would return and the pain and of an end. I know that Bill for that doctors honesty, as I would characterize it, as destruction of his hope. He did not want to hear the reality of his situation. And Bill will admit that.
But not against autonomy. I mean, if you want to be autonomous, don’t you have to have all the information?
Well, that’s the thing. You know, hope is a very salient idea and tool in medicine and has been for a long time. I think doctors have long erred on the side of not, you know, deflating the hopes of patients. It serves multiple purposes. Right. It’s hard to give bad news, but I think Bill very much agrees with this in the sense that he was fine with pain in ways that many others haven’t. I mean, Bill’s been in a chair since the age of 16, so he’s accustomed to his disabilities and to the pain that go along with that. And I mean, both physical and emotional. And he did not see it and that doctors placed to tell him the bad things that could happen. Bill is committed to fighting for every day he can get. And he always has. And he’s valiant and heroic in that sense. But it’s not for all of us.
Speaking of the religious right, how and the language of the religious right, how of battles like Nancy Cruzan and Terri Schiavo shaped where we’ve come to now in terms of death in America?
Yeah, it’s fantastic to see how these issues tend to overlap. But much of it reaches back. Much of the controversy reaches back to the late 60s and early 70s where medical advancements were changing the definition of death in that period of time. The early 70s, we had respirators that can keep the lungs functioning and defibrillators that could keep the heart beating. And before that, death had almost always meant the end of brain function, heart function and lung function. All of a sudden, we had a way to keep the lungs and the heart going indefinitely. And so law and doctors were grappling with what to do with those patients who were on physiological support, which is another word for life support.
Which is another word for life support. But I think doctors are increasing and ethicists are increasingly acknowledging the fact that life is a misnomer in many of these cases.
Just kind of begging the question. Yeah, exactly. Exactly. Like, is this body alive? We don’t know.
And so if we say life support, it’s it’s misleading for people who don’t understand the intricacies of body functionality and death. So, Nancy, the Carentan Quinlan case was followed by the Nancy Cruzan case and then, of course, Terri Shida, who died in 2005. And all three of these women were being kept on physiological support, whether it was a ventilator or a feeding tube, because byelaws and families were still grappling with the meaning of this death. Is a decision then for these families. You did remove the feeding tube, remove the ventilator. And it was a kind of responsibility that was new for four families. It feels as though you are deciding to end your loved one’s life. And the Catholic Church was the most vocal opponent of allowing that right. That’s changed a bit. I think you will find that the ethical and religious directives that are used to govern health care in all Catholic facilities now require removal of feeding tubes and ventilators, but only if it is seen as an undue burden for the patient. So, for instance, sensory shavers case, the Catholic Church and her family, which opposed her husband’s request to remove the feeding tube. The Catholic Church and her family would say that she was perfectly healthy. She could have lived a long life on the feeding tube. It was the only thing she required. They would prefer to term Terri Schiavo as severely mentally disabled, which gives me the creeps. It’s not something that I would choose. And according to Terri Schiavo’s husbands testimony in courts, it’s not what she would have wanted either. And so the Catholic Church has been very much to refresh listeners.
She, Toshiro, had no bread, no higher brain function whatsoever. She wasn’t she was disabled. She wasn’t even conscious.
Right. She was not conscious and hadn’t been for a very long time. She had what’s called persistent vegetative state. So she had some brain function. I’m sorry, brain stem functionality. So she could yawn and open her eyes. Her sleep cycle was regulated by that brain stem and some other higher functions. And that’s very disconcerting for family members who see this person they once knew and loved opening their eyes. But in fact, there’s nothing else occurring. No other functionality in her brain. And this is confirmed by an autopsy after her death. So families can be lured by hope and misunderstanding to believing that patients of this sort can wake up or recover into hoping for a miracle. That just doesn’t exist. Brain cells have never been shown to come back to life.
You’ve had some pretty crazy experiences, sort of spoking around the religious right looking at how Terri Schiavo has become a folk hero.
Yeah, she’s a she’s been turned into a virgin.
You know, there’s there are strange prayer cards that are handed around at various pro-life events. And I attended one in Pennsylvania that really unsettled me. Terri Schiavo’s brother, Bobby, who is now the executive director of the Terri Schiavo Life and Hope Network, an organization committed to.
Dancing others from going for the experience that shy, though, did, meaning trying to stop the removal physiological support. He was the speaker at this pro life event, which really brought home to me the ways in which abortion and other pro life objectives or pro-life issues are put on the same spectrum. You know, stem cell research, for instance, was also discussed at that event. And you can see individuals discussing abortion as a kind of killing, right alongside removal of a feeding tube as a kind of killing as well.
Is the definition of death still changing and evolving?
Yeah, and I think it always will be, in part because the amount of time that doctors must wait before removing organs from a dead body is kind of arbitrary. A Harvard team sat down at one point and said, well, we want organs to be as fresh as possible so that they can then be used to save so many other lives. But we also don’t want to wait too long. We want to wait long enough to make sure that a person is no longer living.
Right. And so is it is it a matter of time or is it a matter of some kind of tests? Like did the Masters have to say something in particular or not say something before they can take out the scalpel and actually harvest the organs?
Well, at the moment, in all 50 states in the country, brain death is death. If you have no functionality in your brain or your brain stem, you are dead. So the definition remains. That’s the end. If you have no brain function, then your heart and your lungs will not continue to function. If you are removed from machines. So doctors say now that after the last heartbeat and I don’t know the exact increment, it’s less than two minutes. Is the wait time before organs are removed. So many people talk about opponents of removal, talk about, say, medical industry just dying to make money off of organ harvesting. And it’s a bit blown out of order because I think there is an innate or an inherent good in being able to use bodily organs to save other lives.
That’s all the time we have for today. And thanks so much for coming on the program.
Thank you for having me.