Tue October 9, 2012
When Prolonging Death Seems Worse Than Death
Originally published on Thu October 11, 2012 2:18 pm
Many of us think of death as the worst possible outcome for a terminally ill patient, but Judith Schwarz disagrees.
Schwarz, a patient supporter at the nonprofit Compassion & Choices, says prolonging death can be a far worse fate. For many patients, good palliative or hospice care can alleviate suffering, yet "a small but significant proportion of dying patients suffer intolerably," Schwarz writes.
Compassion & Choices is an organization that helps terminally ill patients and their families make informed and thoughtful end-of-life decisions to hasten a patient's death. These decisions are not made impulsively, Schwarz tells Fresh Air's Terry Gross. "Nobody makes this choice unless the burdens of living have so consistently, day after day, outweighed all benefit."
Schwarz notes that her organization does not help patients kill themselves, and their work should not be confused with assisted suicide. "They are dying," she says. "They are on a dying trajectory. The only choice they have is the circumstances of their death and what kind of disability they will be suffering as they approach that time."
Compassion & Choices supports the right to die but does not work outside the limits of the law, which varies from state to state. There are now three states — Washington, Oregon and Montana — where, in certain instances, it is legal for doctors to prescribe medication to hasten death.
As patients and their families make these excruciating decisions, they consult with doctors who evaluate their end-of-life options. Making decisions to hasten death "requires a tremendous act of love on the part of the family," Schwarz says. "Because actually, what this patient is doing is leaving them, and leaving them perhaps sooner than their disease would require."
On our conflicted feelings about hastening our own deaths
"People who think they want to be able to, for example, take a lethal amount of medication to end their life — they speculate that that's how they are going to feel, but they actually don't know how they are going to feel when they get to the point where their quality of life is so diminished that they really wish they were dead, that they would not wake up the next morning. But to take that step, to take that final step to cause your own death in one very ... dramatic act is very, very hard, and most people don't do that."
On existential distress and medical prescriptions to hasten dying
"The Oregon Death with Dignity Act has been around for 14 years now, and the ... primary reasons for patients asking their physician for this prescription have remained consistent over all of those years. It's not about pain; pain can actually be managed ... that's not why people want to hasten their dying. They do [it] because they're not able to do any of the things that they've always enjoyed doing — that give them any kind of pleasure. They can't do those things anymore. And they have a complete loss of autonomy, they're dependent upon other people to care for them, and they feel that they've lost all dignity. You have to understand, Terry, this doesn't matter for everybody, but for those people that it does matter to, it matters profoundly. This is really what we really think of ... as sort of existential distress — the meaningless of having to just wait for this death to occur."
On the American Medical Association's definition of physician-assisted dying as incompatible with the role of the physician as healer
"I suppose that's a comforting position to take, but it doesn't really speak to the nature of suffering, and it doesn't speak to a patient's wish to be treated with dignity and to be heard. We talk about ethical principles of beneficence and non-maleficence, that death is deemed the worst possible outcome that should be prevented at all costs. Well, I beg to differ. There are many people for whom death is not the worst thing that could happen to them. In fact, prolonging their dying is the worst thing that could happen to them, and the notion of healing in that environment strikes me as a bit of a one-sided understanding of the relationship."
TERRY GROSS, HOST:
This is FRESH AIR. I'm Terry Gross. We're going to discuss a subject that's difficult to talk about: end-of-life decisions for the terminally ill. My guest, Judith Schwarz, works with the group Compassion & Choices, serving as the regional clinical coordinator for the East Coast. Compassion & Choices helps support patients and their loved ones at the end of life and helps guide their search for a peaceful death.
Schwarz refers patients to pain specialists, hospice care and other services, but if a patient feels they can no longer endure their suffering, and if the end is inevitable, and they are mentally capable of making a clear decision, she can advise them on legal ways to hasten their death.
The organization Compassion & Choices supports the right to die, but does not work outside the limits of the law, which vary from state to state. There are now three states, Washington, Oregon and Montana, where in certain instances, it's legal for doctors to prescribe medication to hasten death.
Schwarz is a former critical care nurse and has her doctorate in nursing research. She writes for nursing and palliative care journals and lectures to lay and professional audiences on ethical and clinical issues in end-of-life care. Judith Schwarz, welcome to FRESH AIR.
JUDITH SCHWARZ: Thank you, it's a pleasure to be here.
GROSS: I want to start by reading an excerpt of an article you wrote, and here it is. (Reading) An experienced hospice nurse and I sat on the terrace of a woman who'd been battling multiple myeloma for years. This elderly patient had invited us to her home to discuss something important. Frail, but sitting very tall, she said: I want to know how I can hasten my own dying if my suffering becomes too much for me to bear. The hospice nurse immediately pushed herself away from the table, saying firmly: I cannot help you with that. I leaned toward the patient and said: I can.
Why is it, Judith Schwarz, that the nurse, the hospice nurse, couldn't help this woman with her question, but you could?
SCHWARZ: We work for different organizations. Hospice has a mission to help people live as well as they can with the best quality of life, as they continue to endure the effects of a terminal illness.
They have long-held values that say we neither - hospice clinicians - neither hasten, nor do they prolong dying. So when somebody says, very overtly, to a hospice clinician: I want help, I want to know what can I do to speed my dying process, it makes them very anxious because that's not what hospice does. Hospice doesn't help patients die sooner.
Compassion & Choices, on the other hand, meets people where they are, and without judgment, listens to them and hears what it is that they want for themselves as their end of life nears.
GROSS: This is a very frightening and disturbing subject for a lot of people. They think of it as assisted suicide and as helping to kill somebody. You don't use the word assisted suicide. You talk about hastening the dying process.
SCHWARZ: Or aid in dying, yes.
GROSS: Or aid in dying. And I'd like you to just talk about that distinction between aid in dying or hastening dying and assisted suicide.
SCHWARZ: Right, and it's a very important distinction. We as an organization and as individuals, do not support suicide. We don't help people kill themselves. What we're working with are a group of individuals, adults, who have a diagnosis of terminal illness most often, and, as you may know, a terminal illness prognosis diagnosis means that in the physician's judgments, the patient will most likely die of their underlying disease within the next six months, or maybe a year, but often it's six months.
That's what the hospice enrollment and definition of terminal illness is. And these people have no choice about whether they're going to die. They are dying. They're on a dying trajectory, and the only choice they have is the circumstances of their death and what kind of disability they will be suffering as they approach that time.
Now, they must be terminally ill and decisionally capable. Very, very few people want to die. But they have no choice. And the choice that we offer them is information about how they can, if they choose, make an informed and thoughtful decision to speed that inevitable death.
This is not something that's done impulsively. Families are aware of their plans, are supportive. They are sad about it, most often, but they are supportive of the end of suffering.
GROSS: I'd like you to tell us about one or two people who came to you, and what I'd like to know is why do they come to you, or why do they ask you to come to them? What was the nature of what they were facing that made them think I don't want to endure that, I'd like to end this as swiftly and painlessly as I can?
SCHWARZ: They know a lot about what lies ahead. They're well-informed consumers of health care. They often have a very good relationship with their health care providers. They often have been through a series of surgeries, and chemotherapies, and radiation - because most of our patients, not all of them, but most of them have cancer. And they are tired of the burdens imposed by their disease.
Often they're at the end of a course of treatment. There's really nothing more that can be offered except maybe an experimental shot at maybe a possibility of maybe slowing the process of the disease. These folks say you know what, that's not good enough for me. I want to know what I can do because I don't want to have to experience the final stages of this disease.
One woman I'm thinking of now, I worked with over the phone and in person for over two years. She had ovarian cancer, and she knew well what the end of that disease is like. There's usually lots of metastasis to abdominal organs, and there can be a great deal of suffering associated with this disease.
So we had, early on, talked about various options that she could use to control her own dying. And I met with her husband, and I knew that she was informing her adult kids about the various options, and she had lots of grandkids, as well. And as is often the case, and I think that this is important, people who think they want to be able to, for example, take a lethal amount of medication to end their life, they speculate that that's how they're going to feel, but they actually don't know how they're going to feel when they get to that point where their quality of life is so diminished that they really wish that they were dead, that they would not wake up the next morning.
But to take that step, you know, to take that final step to cause your own death in one very sort of dramatic act, is very, very hard, and most people don't do that.
GROSS: Do you think a lot of people come to you just for the security of knowing that they will have that option?
SCHWARZ: Absolutely. What people want are choices. They want to know even though they have this terminal illness, even though they've had to give up so much and lost so much, they still have some control, some ability to decide what's right for them. You bet. It's very, very important.
GROSS: I'm thinking that it maybe alleviates a certain amount of fear, because maybe one of the things I think people are suffering fear most about death is that the suffering is going to get worse.
SCHWARZ: That's right.
GROSS: And they're going to be suffering beyond their endurance. And that's a very frightening thought.
SCHWARZ: Terrifying, or they'll end up in the hospital. The folks we work with do not ever want to have to go back to the hospital.
SCHWARZ: You lose so much control over what happens to you when you end up in a hospital, even though you may have a very well-informed advocate who is at your bedside and trying to communicate with a health care team about what your wishes are, sometimes they get lost in the shuffle.
And when things are going wrong, the health care team really wants to fix this one thing that has gone wrong, and that sometimes leads to another problem that also needs to be fixed. And before you know it, you end up in an intensive care unit with lots of tubes and no ability to speak and a family that's distraught. It's very hard. It's very hard to get off that treatment train once you're on it in a high-tech institutional setting.
GROSS: So the people you work with really want to stay home.
SCHWARZ: You bet they do. And they want to have the best of end-of-life palliative hospice care, and we're very, very aggressive about educating our clients and patients about the benefits to be had from home hospice care, palliative care early on, if you're not yet terminally ill. Palliative care colleagues bring a whole wealth of expertise to help manage symptoms so that even though you have an incurable and progressive disease, you're living as well as you can for as long as you can.
But each person should be able to decide when this quality of life or this managing symptoms is not enough, it's not adequate. Going back to (technical difficulties) of the woman, even though she had lots of information, Terry, about ways that she could have sped her dying, she died of her disease. She died with hospice there, she died with her family there, she died with her husband, who is this wonderful man.
And hospice had to work really hard because she had really difficult symptoms to manage, and that's something else that we do in Compassion & Choices. We help the family members effectively advocate for their loved one. Sometimes that's hard to do. If you don't know what to ask, you're not going to get as much information as you need in order to make an informed choice.
GROSS: So clearly you believe that people who are terminally ill should be able to have some control over what happens to them at the end.
GROSS: But there are moral arguments to be made on the other side, that one should never hasten, you know, someone's death. And I am wondering if there are any of those moral arguments that you find compelling even though you disagree with them.
SCHWARZ: The issue that I am quite comfortable with is I don't believe in euthanasia. I don't believe that anybody else has the right to end somebody's life. I'm about self-determined choice and well-informed self-determined choice. So if a person loses capacity, if they can no longer make informed choices for themselves, even though we know what they might have wanted, we're really quite limited in the options that can then be implemented in the absence of a decisionally capable patient.
I know that there are folks who have very strong religious beliefs, whose religious and spiritual guides have them absolutely sure that this is God's decision and not man's, and I appreciate that. I respect those people who feel that way. The problem I have is when they want to or feel entitled to impose those views on somebody else who may not share those religious views.
GROSS: My guest is Judith Schwarz. She's the East Coast regional clinical coordinator for the group Compassion & Choices. We'll talk more after a break. This is FRESH AIR.
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GROSS: My guest is Judith Schwarz. She counsels the terminally ill and their families about end-of-life decisions. She works with the group Compassion & Choices and is a former critical care nurse. What kind of help can you legally offer? Somebody comes to you, they're toward the end of a terminal illness, they're in pain, they're suffering, they think they don't want to go on like this much longer, and they want the option of ending it a little further down the line. What can you do for them?
SCHWARZ: We talk to people about a variety - well, I mean, there's obviously, that's not the first place we start, obviously. We need to know who they are and why they're calling us and what their illness is and what their doctors have told them and how they understand where they are in their disease trajectory.
And we also want to be sure that they're getting excellent symptom management because a lot of times people think they want to die because they're in such terrible pain. Well, of course they would. If you get that pain well-managed, then the desire to hasten death sometimes goes away.
But that having been said, for somebody who's getting good end-of-life palliative care and who is terminally ill and on a dying trajectory and fears the last couple weeks or a month perhaps of their disease and wants to know what they can do.
So we talk about a variety of things that they can do. The first thing is their right to stop any life-prolonging intervention. For example many people have implanted cardiac devices now, defibrillators, and those need to be turned off if you want to get your death to happen naturally or even in a more hastened fashion.
We ask about what kind of medications they're taking and why are they taking them, and have they discussed with their physician their interest in stopping those medications or those treatments and what would be the consequences of those. It's all about informed choices, right.
Then the second thing we do is we talk about stopping eating and drinking, which is certainly a legal and ethically appropriate palliative end-of-life option for people find that their suffering is just unbearable. It's a process. It needs to be well-understood. There needs to be support. There are lots of things that need to be in place for that to be, quote, successful.
And by successful I mean a peaceful death that happens within days to, at the outside, two weeks, as a rule.
And then the third option is the possibility of the patient acquiring or accumulating a lethal amount of medication that they have to be able to self-administer.
GROSS: Let's start with voluntarily stopping eating and drinking as a way to end your life. You said it could take up to two weeks?
SCHWARZ: You die of dehydration, not starvation.
GROSS: Not starvation?
SCHWARZ: No. And actually, Terry, most people who are living with a terminal illness and are close to death are not actually very hungry. And it is often the case that people as they get close to the end of life just lose interest in their surroundings, in their loved ones and in food and fluid, and people have been dying this way for generations, for thousands of years.
So the trick is to understand what's involved, and it's important that people understand that it is a process, and it doesn't happen immediately, and going without liquid can be quite a challenge. Most people don't complain of hunger; that's not a problem. But some people have a really tough time with a dry mouth, and so you need to have lots of supporting and skillful care giving, oral care so that - I mean, the goal here is not to increase suffering but to manage these kinds of symptoms effectively so that people can really slip away, which is what they do.
They often lose consciousness sometimes in that first week and die peacefully in that second week.
GROSS: I think it's very hard for family to watch somebody die because, you know, immediately because they're not eating or drinking. People want to be nurturing.
GROSS: It's a family's job to be nurturing, and I've witnessed this. To watch somebody who's dying, and they're refusing, you know, like drink or food, you know, there's family members who want to say no, no, no, you have to drink something, you have to eat something.
SCHWARZ: Right, and that's why we really need to sit down with everybody. We need to sit down with that patient and the family and have the family understand that this requires a tremendous act of love on the part of the family because actually what this patient is doing is leaving them and leaving them perhaps sooner than their disease would require.
But nobody makes this choice, Terry, unless the burdens of living have so consistently, day after day, outweighed all benefit. They're suffering in ways that they can't bear it. And somebody who loves a person who's suffering and knows that that suffering could be eased and shortened if they could be supported in their decision to stop all oral intake, that's a tremendous act of love and support.
Indeed we want to care for our loved ones as they're dying. We want to give them the chicken soup that always made them feel good. But there's a time that chicken soup is not going to fix it.
GROSS: Often terminally ill patients who are in pain are also on morphine to help relieve that pain.
SCHWARZ: Or some other narcotic.
GROSS: Or some other narcotic, and certainly in hospice, the patient often has the option of morphine. I think the families of a lot of people who are in hospice and who are exposed to morphine for the first time through the hospice care don't know much about morphine. They know it's addictive, they know it's a banned substance outside of certain medical uses.
And I think one of the fears some people have is that the morphine is actually killing the patient; or, you know, unintentionally hastening the patient's death. Whereas I think there's other people who are hoping that the morphine will do just that, that the morphine will hasten their death.
So can you talk a little bit about the qualities of morphine when used for the terminally ill?
SCHWARZ: Well, the goal of the morphine, or any narcotic for that matter, any analgesia, is to manage the pain, not hasten the death. And it's very - you know, there's so much misunderstanding and misinformation about the need for and the appropriate doses that are sometimes required for people who are living with really extensive disease.
And you're right, there's a lot of fear about using narcotics. There's fears - elderly people with terrible, terrible disease worry about getting addicted. Other people think they ought to be able to tough through it and not have to give in to the pain.
But you know, gosh, these are wonderful drugs that can be very helpful in many ways in managing horrible pain, but there are also side effects. I mean, some of the side effects are that you get really sleepy, and you get muddled, and you can't get your thoughts organized. And people who are dying, many of them don't want to have to lose the ability to communicate with their loved ones.
So they would rather accept a bit more pain to be a little bit more alert. The other problem with narcotics, and this is particularly a problem with elderly people who have cancer in their belly, is it causes terrible constipation. And again, some people would rather have more pain and less constipation, but this is where the skills of hospice clinicians and hospice nurses, in particular, are wonderful and very, very helpful.
And what you tell patients and families all the time is that they should have as much pain medication as they need to manage the pain, and whatever pain they're saying they have, that's what you believe, and that's what you treat. It doesn't matter what somebody else thinks is appropriate.
But there's a lot of education that has to be done because there's a lot of fear and ignorance amongst, sadly, health care professionals outside of hospice and palliative care, who really don't understand the importance of effective and good pain management.
GROSS: Judith Schwarz will be back in the second half of the show. She's the East Coast regional clinical coordinator for the group Compassion & Choices. I'm Terry Gross, and this is FRESH AIR.
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GROSS: This is FRESH AIR. I'm Terry Gross, back with Judith Schwarz. She's a former critical care nurse who now counsels terminally ill patients and their families about end-of-life choices. She advises on palliative and hospice care, as well as advance directives. But when the dying person decides that their suffering is unbearable and they want to hasten death, she can offer information about how to do it legally.
Now, you mentioned one option that many people think about who want to hasten their death because of pain and terminal illness is medication. And I presume what you are implying there is an overdose of medication.
GROSS: And, you know, a lot of people have gone that way over the years. But is that something that you can legally counsel somebody about?
SCHWARZ: Well, we believe that we have every right to give people information - and that's what we do. We give them information about a variety of options that they can use or they can talk to their physicians about. Sometimes physicians are willing to help, particularly patients that they've known for a long time and had as patients for many, many years. They've made a kind of a contract way back in the day, and they will honor that. And sometimes those physicians will call us and say, you know, I've got this patient, I'd really like to help them but I don't exactly know what to order. Can you help me with that? And we do.
We have a lot of experience in certainly, as you know, in Oregon and Washington and Montana, where aid in dying is legal. Outside of those states it gets a bit more complicated.
GROSS: So let's go with those states where it is legal and you can in an open way talk with people about medication that can hasten death.
GROSS: I think what people think of is just like taking a bottle of sedatives. Right?
GROSS: So is that typically like the medical way that you would recommend in a state where it's legal and you can discuss these things?
SCHWARZ: Well, in a state where it's legal - Oregon, Washington and Montana - there are very strict guidelines about how this proceeds. You don't just waltz into your physician's office and say, OK now, I'm ready to die. Would you write me a prescription for a lethal amount of barbiturates? There's a very, very well-documented and adhered to process of two physicians have to agree independently seeing this patient that they are both terminally ill and decisionally capable, and that they have complied with the Death with Dignity regulations which would require a 15 day waiting period between the two verbal requests and a written request that has to be witnessed, and that patient has to be able to get that prescription, usually for barbiturates, filled themselves, and then they have to be able to self-administer. And it's not usually a bunch of pills because if you're swallowing pills you're having to use a whole lot of water, so they're usually mixed up in some liquid - ground and mixed up in some liquid.
GROSS: I was thinking about that because I know I think many people who are near death couldn't swallow enough drugs to take their own life...
SCHWARZ: Right. Right. That's right.
GROSS: ...because they're not capable of that kind of swallowing anymore.
SCHWARZ: Right. Exactly. And the other thing that's also the cases is that these are folks that are in hospice and they're getting really good pain management. An interesting, it's always interesting to me that, you know, the Oregon Death with Dignity Act has been around for 14 years now, and the same three primary reasons for patients asking their physician for this prescription have remained consistent over all of those years. And it's not about pain; you know, pain can actually be managed, but that's not why people want to hasten their dying. They do because they're not able to do any of the things that they've always enjoyed doing - that give them any kind of pleasure. They can't do those things anymore. And they have a complete loss of autonomy, they're dependent upon other people to care for them, and they feel that they've lost all dignity. Now you have to understand, Terry, this doesn't matter for everybody, but for those people that it does matter to, it matters profoundly. These are - this is really what we think of as sort of existential distress - the meaningless of having to just wait for this death to occur.
GROSS: Do you have any idea how many people have taken advantage of the right-to-die laws in Oregon, Washington and Montana - the three states that have them?
SCHWARZ: I can tell you about Oregon and Washington. In the 14 years that the Death with Dignity law has been effect in Oregon, there have been 935 prescriptions written and of those, 596 were used. And we see this consistently. Each year - like last year in Oregon - there were 114 prescriptions written and 71 were used. About a third of the people who get a prescription for a lethal amount of medication never use them. Often they die of their disease, but they have the option - they have it tucked away in their drawer. And believe me, it provides such enormous comfort and peace of mind. So that's Oregon. Washington's law was just passed two years ago. And in 2011, just this last year, 103 prescriptions were written and 70 were used.
And there's another thing that I think is interesting. Eighty different doctors in Washington wrote those prescriptions. And the same is true in Oregon, there a lot of different doctors that are writing these prescriptions.
GROSS: One of the things you do is counsel people about living wills and directives. What are the major questions you have to ask yourself and answer when you're putting together a living will?
SCHWARZ: It's really hard, you know, actually because we're asking people to imagine their worst medical nightmare, you know, to imagine various scenarios where they're in a kind of gray zone of disability or illness where they can't actually make choices, and yet they may be in pain or they may have to. Somebody may want to do more surgery or take them into the ICU or - these are really hard things to imagine when you're young and you're fit and the chances of you being able to be treated and end up in the same condition you were before the operation or the insult. Most people are very eager to have the best that American medical care has to offer, and we do wonderful things. The problem is that as people get older and more debilitated, they never get quite back to where they were before the latest kind of problem and insult. And unless they've been continuing to talk to their family members about what's not OK for them - what they - the circumstances under which they don't want to continue to live, unless they've continued to have those conversations, the family is so unprepared for the kind of crisis; emergency room to ICU, to the surgery, to the back to the ICU. They get quilted into providing more time and seeing if maybe we can fix this and maybe it will get better. And it's a terrible situation to be in.
GROSS: Give us an example of what you consider to be some of the most up-to-date thinking in terms of a living will or a similar document that gives instructions about the end.
SCHWARZ: OK. Increasingly, we're seeing all of these various pages of advance directives that people have completed and they're converted into something that's called Medical Orders for Life-Sustaining Treatment, or Physician Orders for Life-Sustaining Treatments. And what happens is you sit down with your physician, and this is only appropriate for people who are in the last year or two of life. And it's hard to know whether you're actually in that area, but if you are finding your going back and forth to the emergency room a lot from your assisted living facility or you're maybe you're home with round-the-clock care and you have to keep end up in the emergency room and they don't bring your advance directive in the end, then you get treated in the emergency room in ways that your family is appalled by and they want to stop, this Medical Orders for Life-Sustaining Treatment is a way of translating all of these various documents into one medical order. And let's face it, other clinicians tend to respect medical orders from a physician more easily or readily than a piece of paper that has been drafted by a patient who knows when. So these are documents that we're seeing passed by individual state legislators increasingly. Out West, they're called POLST and on the East Coast they're called MOLST forms. And they're...
GROSS: One is for physician ordered and one is for medically ordered?
SCHWARZ: Yeah. And they're basically the same thing.
SCHWARZ: And these can be quite a useful tool because it actually has your physician then need to actually know what your wishes are for. Frankly, sadly, there's too little of this conversation because physicians often can't bill for these kinds of conversations. But so, this is an opportunity to actually sit down the patient and their loved ones and to actually hear what their concerns are. These do not resuscitate orders, right? Many elderly people have a stipulation that says I don't want to be resuscitated. But what they have to realize is unless they have an out of the hospital do not resuscitate order, if those EMTs come through their apartment door and they don't see one of those out of hospital do not resuscitate orders, they are required to jump on that patient's chest and do cardio pulmonary resuscitation - whether the family is saying no, no, no, she didn't want that, or not.
GROSS: Well, that leads me that, you know, I think a lot of people have advance directives but they have no idea where they are.
SCHWARZ: Only 25 percent.
GROSS: Well, even the people who do, I have a feeling they have no idea where did I put it?
SCHWARZ: Yes. Exactly.
GROSS: It's in the closet? Is it in the drawer? Is it in a vault?
SCHWARZ: Yeah. I hope not in the vault.
GROSS: Why not in the vault?
SCHWARZ: You need it with you when you are scooped up from the sidewalk and brought into the emergency room. Although, people should be comforted if they have an appointed health care agent and that health care agent has a copy of your advance directive appointing them as the agent which, of course, they should have. Even if you end up in an emergency room and all kinds of life-prolonging interventions are done because that's what you do in an emergency room, anything that has been started can be stopped and withdrawn when it's clear that this is not what the patient would've wanted.
GROSS: My guest is Judith Schwarz. She's the East Coast regional clinical coordinator for the group Compassion & Choices.
More after a break. This is FRESH AIR.
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GROSS: My guest is Judith Schwarz. She counsels the terminally ill and their families about end-of-life decisions. She works with the group Compassion & Choices, and is a former critical care nurse.
In the years that you were a critical care nurse before doing the kind of work that you're doing now - counseling people about how they might hasten death if they get to that point where they feel like they need to - were you asked by patients to help them hasten death?
SCHWARZ: In hospitals?
SCHWARZ: It's funny - I don't, I don't - it's hard for me to remember that. I mean, certainly people that are in terrible pain will often say that they would rather die than continue to be this kind of pain. But that's, you know, is that an informed and thoughtful and reflective-upon request for assistance in dying? I didn't feel that at the time. It was a plea for help and a demand that appropriately that their symptom should be managed.
But once I was no longer at the bedside and had started back to school, and began to really sort of immerse myself in the literature of end-of-life decision-making and ethics and, you know, palliative care, I think that there, I certainly had personal experiences where people who are at the end of a long battle with disease wanted help in dying or wanted information and I didn't have that information. I didn't know what to tell them. I didn't know - and most nurses and most physicians will tell you and quite honestly, I don't know how much extra medication you should take. I mean, this was my dissertation research, Terry. I mean I, my study was what's it like for nurses when a patient asks in dying, 'cause when I went to the literature there was nothing written about nurses. It was all about physicians and physician-assisted suicide.
So I interviewed 10 nurses and said to me what it was like. What did you feel? What did you think you were asked being asked to do? How was it for you? And those nurses - particularly the hospice nurses - would say I had that experience and I've said to the family, look, you've got plenty of stuff in the house. I don't know what to tell you to take, but don't tell me about it and I won't chart this conversation. Now, those were the ones that actually heard and listened to their patients and were willing to talk to me, which was a pretty scary process.
So I think that these kinds of requests happen all the time but I think that patients learn very early on in their disease trajectory who they can have these conversations with, who they can trust to listen to them and hear them without judgment. I've had hospice patients who've told me that they have asked the wrong clinician on their health care team and they've ended up in a locked psych ward on a suicide watch. Terminally ill patients who have said I want - I can't stand this. I want to die. I want out of here. Now, you know, one could say that they're often inexperienced nurses or social workers, but there is so no excuse for that.
GROSS: The AMA, the American Medical Association, says that physician-assisted dying is fundamentally incompatible with the physician's role as healer. And I'm wondering what your reaction to that is.
SCHWARZ: Well, yes. I suppose that's a comforting position to take, but it doesn't really speak to the nature of suffering and it doesn't speak to a patient's wish to be treated with dignity and to be heard. I mean, you know, we talk about ethical principles of beneficence and non-maleficence, you know, that death is deemed the worst possible outcome that should be prevented at all costs. Well, I beg to differ.
There are many people for whom death is not the worst thing that can happen to them. In fact, prolonging their dying is the worst thing that can happen to them and the notion of healing in that environment strikes me as a bit of a one-sided understanding of the relationship.
GROSS: So, just one more thing. Do you think about your own death much? I hate to ask you that but, you know, we're talking so much about death.
SCHWARZ: It's an interesting question and, yes, I do, but I think that I'm like most people. I mean, intellectually I have absolutely no question at all about what will happen, the circumstances under which I would not live, or choose to live, and what I would do to take care of that. And I have two kids. I love them both. But there's no question in my mind that my daughter, the midwife, of course will be my health care agent.
My son who I love to death on the West Coast would be negotiating with the physicians about isn't there some other study that maybe would work?
SCHWARZ: So I know and this would be really, really a hard thing for my daughter to do but I know that she would do it, and I know that my son would support her as well. But you know what? To answer your question, I don't know what I'm going to want. I think I do, but I haven't lived it yet.
GROSS: And you've seen people change their mind once they get there.
SCHWARZ: Oh, yes. Oh, yes. Oh, yes. Life is pretty precious, and as you get close to the end it's amazing how just seeing the sun come up can be pretty wonderful. And that little bit of chicken soup, even if it's only a mouthful, it's wonderful. I've had some wonderful patients when we've talked about stopping eating and drinking and they say but do I have to give up my Scotch?
SCHWARZ: We talk about that. Well, I don't know. Let's see. Well, that should definitely be the last to go. So, but who knows? One doesn't really know. It should be something that you get to decide about, though. Other people shouldn't make that choice for you. If you want that choice, you should be the one that's able to make a choice that reflects who you are, how you've lived, and how you want to be able to die.
GROSS: Judith Schwarz, thank you so much. I really appreciate you talking with us.
SCHWARZ: Entirely my pleasure. Thank you for having me.
GROSS: Judith Schwarz is the East Coast regional clinical coordinator for the group Compassion and Choices.
Let's hear a little music. We just got a new CD that pairs the pianist Dick Hyman, who can play just about every era of jazz, with his daughter Judy Hyman who is a violinist and composer. Here they are playing one of her compositions on the album "Late Last Summer."
(SOUNDBITE OF MUSIC)
GROSS: Coming up, our linguist Geoff Nunberg tells us what he was thinking about when he watched last week's presidential debate. This is FRESH AIR. Transcript provided by NPR, Copyright NPR.