How hospice became big business. A new investigation in The New Yorker reveals an industry that at times puts profits before patients.
California has just become the fifth state to legalize so-called “aid in dying.” Under the law, certain terminally ill California residents can elect to end their lives with the help of a doctor’s prescription. Following an emotionally-charged debate, Gov. Jerry Brown signed the bill into law Monday, writing, “in the end, I was left to reflect on what I would want in the face of my own death.” For many supporters, this represents a pivotal moment for an issue that’s been gaining steam across the U.S. But for critics, California’s decision takes the national conversation about end-of-life options in the wrong direction. We hear both sides, and what the California law could mean for other states.
- Mickey MacIntyre Chief program officer, Compassion & Choices
- Dr. Ira Byock Executive director and chief medical officer, Providence's Institute for Human Caring; author of "The Best Care Possible"
- Arthur Caplan Director of the division of medical ethics, New York University Langone Medical Center
- Ben Adler Capitol bureau chief, Capital Public Radio in Sacramento, California
Listen: Brittany Maynard's Husband On New Law
Ben Adler, the capitol bureau chief for Capital Public Radio in Sacramento, California, spoke with Dan Diaz on Oct. 5 after California Gov. Jerry Brown signed an aid-in-dying bill into law. Diaz’s wife, Brittany Maynard, moved to Oregon last year so she could end her own life after battling terminal cancer.
“What he wrote, to me, was very touching, very moving,” Diaz told Adler about his interaction with Brown. “His thought process got right to where it needed to be, what Brittany was facing, and the recognition that nobody should stand in the way of Brittany or any terminally ill individual from having all of the options available to them.”
Brittany Maynard Writes To Diane Rehm
Ahead of our Oct. 23, 2014 show on the aid-in-dying movement, and Brittany Maynard’s choice to end her own life, Maynard wrote into the show to talk about her decision.
A portion of her comments appear below.
The day is my choice. I have the right to change my mind at any time, the patient right that is critical to understanding Death with Dignity. The claim of exploitation is utterly false, considering I had gone through the entire process of moving, physician approval for Death With Dignity, and filled my prescription before I ever even spoke to anyone at Compassion and Choices about volunteering and decided to share my story.
I support the organization because I support the cause. I believe this is a healthcare right and choice that should be available to all terminally ill Americans.
MS. DIANE REHMThanks for joining us. I'm Diane Rehm. California is now the fifth state where it's legal for certain terminally ill patients to end their lives with a doctor's prescription. It's the latest chapter in an ongoing national debate over end-of-life options, which intensified last year with the death of 29-year-old Brittany Maynard.
MS. DIANE REHMHere with me, Mickey MacIntyre of Compassion and Choices, joining us from San Marcos, California, Dr. Ira Byock of Providence's Institute for Human Caring, joining us from New York City, Art Caplan of the NYU Langone Medical Center. And, of course, we'll be taking your calls, your emails throughout the program. But first, joining us from Sacramento is Ben Adler who covers California politics and government for Capital Public Radio. Ben, I welcome you to the program. Give us a brief outline of the specifics of the bill.
MR. BEN ADLERGood morning, Diane. Well, this is a piece of legislation that would make California the fifth state in the nation to have this kind of end-of-life option and it requires a California patient who is terminally ill to get the approval of two doctors and also sign a written statement that is witnessed saying that this is something they want to do. And the bill's supporters say that is sufficient safeguard to make sure that nobody is pressuring anybody or taking advantage of the system.
MR. BEN ADLERThat's obviously something that critics of the bill say is not, in the end, sufficient. But there are, you know, potential safeguards in place here. There's also liability protections for the medical community. That's what got the main group that advocates for doctors in California to remain neutral on this matter and allow their members to just take individual positions. And that was a big boost to getting the measure through as well.
REHMTell me why the bill was introduced in a special session.
ADLERLegislative shenanigans, essentially. The bill was unable to get through the regular session. It passed the state senate with a comfortable enough margin, bogged down in an assembly committee where some Democrats, many of them from the Los Angeles area with low income constituents, some but not all Latino or Catholic, had concerns about, well, maybe, you know, low income Californians would feel pressure to end their lives prematurely rather than seek treatment, if they weren't completely, you know, terminally ill or even if they were. But, you know, people have received a terminally ill diagnosis before, but been able to recover.
ADLERAnd the fear was that, you know, they could say I don't want to be a burden on my loved ones. I'm going to end my life.
REHMBen, you've said that before the governor signed the bill, he was really totally tight-lipped about it. He gave no hint as to what he was going to do. What can you tell us about how he came to his decision?
ADLERWell, you know, Jerry Brown was a Jesuit seminarian in his younger days and he was raised Catholic. And so I'm sure that this -- and you can tell from reading a rare signing statement that he issued yesterday that this really weighed on him. In fact, a year ago, he called Brittany Maynard, the young terminally ill California woman who moved to Oregon to take advantage of that state's law to end her life, he called her. They spoke for an hour. And that shows that the governor was thinking about this many, many months before the bill was even introduced at the state capital.
ADLERAnd, you know, Diane, you've probably read his signing statement and...
ADLER...it's noteworthy for the personal nature of that statement.
REHMEspecially for this last paragraph which says, "I do not know what I would do if I were dying in prolonged and excruciating pain. I am certain, however, that it would be a comfort to be able to consider the options afforded by this bill and I wouldn't deny that right to others." I thought that was extraordinarily personal, Ben.
ADLERYeah. I think so. You know, the governor noted that in addition to talking with Brittany Maynard and her family, you know, he discussed the matter with a Catholic bishop, two of his own doctors and many others and the people he spoke with took, he said, very contradictory and nuanced positions. And so, you know, he reviewed arguments from both sides, I think, in great depth. You know, it seems clear, reading this letter, that the governor put a lot of thought into his decision on this bill. In the end, he sided with supporters and, in fact, when I spoke yesterday with the husband of Brittany Maynard, Dan Diaz, he told me that the governor, in his mind, got right to where the governor needed to be on this bill, the right frame of mind pointing to that last paragraph where, you know, it's essentially "I don't know what I would do, but I don't want to deprive others of that choice."
REHMBen Adler is Capital bureau chief of Capital Public Radio in Sacramento, California. Ben, I hope you can stay on the line with us.
REHMAll right. And now I want to turn to Dr. Caplan. Art, Ben mentions safeguards within the bill. Are there sufficient safeguards from your perspective?
DR. ARTHUR CAPLANWell, the safeguards are pretty much the ones that have been in place in Oregon and Washington. So Oregon has had them in place for about 20 years. They seem, to me, to have worked fairly well. We don't see abuses coming out of Oregon. In fact, relatively few cases have been disputed by anyone, but even the authorities there don't seem to find problems and the reports that come out annually on the practice show a small number of people involved and we're not seeing the poor rushed off or the disabled rushed off out of guilt or shame or financing.
DR. ARTHUR CAPLANOn the other hand, these protections are going to have to be something that doctors learn about. They're going to have to be watched carefully. Just 'cause it's worked in a couple of states doesn't mean that abuse isn't possible. You know, the two doctor requirement could be a dermatologist and an allergist for all I know. It's not necessarily someone who's got great knowledge of palliative care and end-of-life care. And I worry a little bit in California.
DR. ARTHUR CAPLANYou're supposed to offer the option of palliative care, offer the option of hospice, but I'm not sure everybody can get that.
REHMAll right. And now turning to Dr. Ira Byock. He's executive director and chief medical officer for Providence's Institute for Human Caring and the author of the book titled "The Best Care Possible." Dr. Byock, what's your take on California's new law?
DR. IRA BYOCKI think we have turned a corner. I think we've turned a chapter. The law is now, you know, it's been signed. And now, I hope we can turn our attention to the real issue, which is why people are continuing to die badly in America. My concern has always been that the law or this bill and now law really does nothing to fix the roots of people's suffering as they die. We haven't -- with the stroke of his pen, Governor Brown made this law, but he hasn't done anything to improve medical education and training, which the Institute of Medicine and multiple white papers have shown is sorely deficient.
DR. IRA BYOCKWe haven't improved staffing in nursing homes, which often people have told me is one of the reasons that they would rather die than be sent to a nursing home. We haven't improved access to palliative care, as Dr. Caplan said, and many hospitals have palliative care programs on their website, but try to get it and you will find that it's impossible and that often the palliative care you do get is little more than a prescription for pain medicine.
DR. IRA BYOCKNone of the counseling and nuanced guidance that we know is possible to help people live through the end of life. And, Diane, a point that I've made on this show before and has never really been attended to is, that now, as of January 1 in California, it will actually be easier to qualify for this lethal prescription than for hospice under Medicare. And I say that because in both criteria, you have to be terminally ill with a prognosis of six months or less, confirmed by a physician or two physicians, but in order to get hospice care, you also have to give up treatment for your cancer or your heart disease to qualify under Medicare.
DR. IRA BYOCKNow, what message is society sending to terminally ill people and their families in offering them a lethal prescription, but really withholding hospice and palliative care from them? So that's the conversation I think we can now begin to have because we settle this matter in California. I don't like the outcome, but I live in a reality-based world and this is now settled.
REHMAll right. And turning to you, Mickey MacIntyre of Compassion and Choices, what about the concerns that Dr. Byock raises?
MR. MICKEY MACINTYRERight. I think we share those concerns with Dr. Byock and I don't think it's a matter of settling one or the other. I think this is a broad-ranging conversation that has multiple facets to it. The actual delivery of end-of-life care needs to improve as this study has shown and there are some service providers and healthcare providers, like the collection of seven providers lead by Cedar Sinai in Southern California in the LA area, that are really working to try and develop better palliative care programs, in-community programs that make them more accessible and affordable to people across the southern part of the state.
REHMMickey MacIntyre, he's chief program officer for Compassion and Choices. We'll take just a short break here. We'll talk further when we come back.
REHMIf you've just joined us, we're talking about the fact that Governor Jerry Brown of California has signed into law a death with dignity. His first paragraph talks about this as being not an ordinary bill because it deals with life and death. The crux of the matter, he said, is whether the State of California should continue to make it a crime for a dying person to end his life no matter how great his pain or suffering. On the line with us from Sacramento is Ben Adler with Capital Public Radio. Ben, tell us about the polling numbers on this in California.
ADLERYou know that just came out yesterday. The timing, I guess it was ready to release but the group held onto it until the bill was signed. But it's a respectable outfit, The Field Poll, and it said that two out of three, roughly, Californians agree that this bill should become law. So in the end, it looks like the governor took an action, although reading his signing statement, it's, you know, it would be hard to argue that he took -- especially given that he's termed out -- that he took a position just because what the majority of Californians think. But the position he took appears to be aligned with that of California voters.
REHMAnd, Mickey MacIntyre of Compassion & Choices, you have new polling data on New York.
MACINTYRERight. So we did commission a poll for a campaign in New York are moving forward around aid in dying, like in California. And while we see two out of three people supporting aid in dying, it actually increases to four out of five people, once they learn more about what it is. So the question around the idea that somehow people are being misled by campaigns or things like that doesn't really come true. And what this also means is that people are more interested in knowing more about their own health care at the end of life and being able to participate in the decisions, along with and partnered with their doctors, their family members and their support systems.
MACINTYREThat's a really important component. When we continued to do research, what we found is that the most important relationship, the most important thing that will advance the kind of care that Dr. Byock is proposing, is how well the conversation, how informed the individual is to the benefits and burdens of their end-of-life care plan by their doctor.
BYOCKSo I would like to see polling on how many Americans think their doctor should be adequately trained to treat their pain and guide them through the difficult course of serious and terminal illness. I'd like to see polling on whether Americans think they need to give up treatment for their disease to get hospice care for their comfort and quality of life. Why don't we turn the conversation, Diane -- you could do us all a service as an outspoken advocate for the right to die -- just turn attention to why people are dying badly.
BYOCKYou know, we could have on your show the leader of the AAMC, the Association of American Medical Colleges, to finally ask the question why repeated recommendations from the Institute of Medicine have been ignored by medical colleges.
BYOCKWhy we're not staffing nursing homes -- and that would be, you could call in the head of the Beverly Corporation or the nursing home chains, and ask why they are still understaffing their nursing facilities, often without a nurse overnight -- literally without an RN overnight on-call or adequate aides to take good care of our grandparents and our parents, our brothers, our sisters, our spouses.
BYOCKYou know, Compassion & Choices now has one definitive victory in California. But instead of staying there and working to address the grievous deficiencies that we all know exist in the way people are cared for, they're own statement suggests that now they're raising money on this victory and going toward New Jersey, Colorado, Connecticut, Kansas, Massachusetts, New York, North Carolina. That's the new frontier. And I guess that's where the media, including your own show, will follow this story.
BYOCKBut I suggest it's the wrong story. We should be demanding whole-person care for people through the very end of life. That we can deliver on. We know it's feasible. It's been proven time and again that it can happen. And we know it's affordable. But we're not having that conversation.
BYOCKWe seem fixated on this right to hasten death.
REHMAnd just for the record, Dr. Byock, you are quite correct in that I have been and remain on the side of those who wish to have choice in dying. Dr. Caplan, what do you make of Dr. Byock's statements that we're really focusing on the wrong thing here? That we should be moving toward greater education, greater staffing of qualified nursing home caregivers, that we're really not putting the emphasis where it should be.
CAPLANWell, of course, he's right. We still have a miserable nursing home system. If I ask patients, would you rather go to prison or go to a nursing home, about 80 percent would pick the prison. So, you know, it's not a good situation out there and we all know that. It's not news. It hasn't been good for decades. Nursing homes, of course, are not about the terminally ill. They're just about comfort care in old age, with disability and frailty. I just moved my parents into an assisted-living facility at 96. And...
CAPLAN...they found themselves a little -- excuse me one second, let me shut that off -- they found themselves, you know, terrified of going into this facility. It's actually a relatively nice place. But they'd heard so many horror stories that I think it delayed their going in there for years. And they're safer and I think happier and they have more sociability there.
CAPLANBut let me shift to two other political points, Diane. I think the right-to-die or assistance-in-dying movement will move on to other states. That's no doubt true. And we can also say with some certainty, they will begin to win. This California victory is not just about California. That moves one in ten people into a situation where they have this choice. There's no doubt that other states are going to follow and I would expect, within a couple of years, we're going to see many states.
CAPLANThe other battleground is going to be interesting. What about incompetent people, people who fear Alzheimer's, people who fear dementia, people who feel losing their cognitive status so that they couldn't elect this? Is that going to become the big issue? Or are we going to do what Dr. Byock says and really double-down on palliative care, on support? I don't know which way it's going to go but I would say 50-50, we could well see, if you will, a shift into let's move away from the competent, let's start talking about the incompetent and their right to have a surrogate.
REHMAll right. And to that end, Mickey MacIntyre, I have a Facebook message from Debra. She says: I'm hopeful this law will lead to a more lenient law in the future. Dementia, she says, runs in my family at an early age. I watched my mother spend 10 years dying. My mother's slow decline nearly killed my father. It was heartbreaking to watch and endure. Her teeth were rotting in her head and no dentist would work on her. How is that even ethical? I want the option to end my life with dignity if I start seeing the symptoms. I know how it plays out and I don't want that for my family. So are both Dr. Byock's and Dr. Caplan's concerns reality?
MACINTYREWell, I think, dementia, the loss of cognitive ability to make these decisions is, in and of itself, a very difficult problem that needs to be addressed. But it's part of the whole system of care that Dr. Byock is speaking to and that we do a lot of work on in addition to aid in dying. Aid in dying isn't a separate thing that happens. It is part of the overall end-of-life care options that need to be available to people in all different phases of their end of life. And I don't think we have the right answer for dementia and cognitively impaired people at this point and whether this law, in particular, will address that. I know it doesn't today.
MACINTYREBut what I do think we need to do is really examine what aid in dying -- this adoption of aid in dying means, which is it's turning a corner from a system of medical care that seeks to isolate the patient from the decision making and to control the mechanism and manner of what their end-of-life care will look like. And hopefully, by opening up the dialog between doctor and patient in a real way -- not in kind of the way that we've seen in our research today how it happens -- but in a very real way, perhaps in the idealized sense of the palliative care that Dr. Byock sees, I hope that will add to the answers for people with dementia and a loss of cognizance.
REHMBen Adler, I want to ask you about another provision of the California law -- which it seems to me is vitally important -- which is that it's going to be reexamined 10 years from now to see how it's working. Is that correct?
ADLERYeah. The sunset clause was put in very late in the legislative process. And, quite frankly, I don't think supporters would have put it in if they didn't have to but I think they felt that it was necessary to get the measure passed.
REHMAnd, Dr. Caplan, what do you think of that review 10 years from now? Does that in any way sort of ensure that there is sufficient research to make sure that there's no abuse of this law?
CAPLANWell, I think it's a small handhold. I don't think it's major. I would hope for a review every year of what's going on. You really have to take a close look. That's what Oregon does and I think that's what California has to do too. Now the sunset, you know, you can revisit it. Trust me, if there are problems emerging after two or three years, we're going to be revisiting it...
CAPLAN(laugh) ...before the 10 years.
REHMOf course. And to you, Mickey MacIntyre, on Dr. Byock's point that this is likely to spread, considering the fact that California has now passed it, aren't there similar considerations under investigation in some 24 states?
MACINTYRERight. So in the last legislative cycle, we saw I think a total of 26 along with the District of Columbia. And those measures continue to be pending in a number of those states. And we anticipate -- because many states have legislative sessions that end and then begin again, or only last for several months -- we anticipate that, with the anniversary of Brittany Maynard's death and her story and her continued call to action -- that legislators -- and the success of California -- that legislators will take this up again in the new session.
REHMSo do you believe that California's decision spurs other states to move in that direction?
MACINTYRERight. And I think other states were already moving in that direction. You know, you went from maybe four states introducing laws prior -- in the prior legislative session, to this last one, to having, you know, 26 introduce in this last session. So I think that that momentum will continue -- that momentum that is about acknowledging that patients need to have control over how they're dying.
REHMMickey MacIntyre, he's chief program officer for Compassion & Choices. And you're listening to "The Diane Rehm Show." Dr. Byock, I know you wanted to jump in.
BYOCKSo I'm still struck by the Facebook caller or writer, who is advocating for assisted suicide or euthanasia for a demented loved one. And in her writing, she says that it's partly because her mother or the person who was suffering couldn't get dental care. Notice we're not talking about getting aged people good dental care and paying for that, we're talking now about assisted suicide or euthanasia for demented people. That's where this conversation inevitably goes.
BYOCKYou have on somebody from Compassion & Choices but another group, Final Exit Network, who has been also advocating for legislation, says on their website that they don't think that this right to die, this so-called right to die should be predicated on a terminal illness -- that everybody should have that right to die. Dr. Caplan and a colleague, Barron Lerner, wrote a cogent statement in August in the JAMA internal medicine -- excuse me, ethics, Primary Internal Medicine, I think, Journal, that reviewed the situation in Holland, Belgium and Switzerland, in which people are being euthanized, by their request, for being terminally ill or being depressed or having lost the will to live.
BYOCKSo I just want to keep pointing out that, now that assisted suicide will be legal in California, doctors will still not have been adequately trained or have the skills to treat incurably ill people's pain or breathlessness. They will be no better at listening to their concerns or counseling people through the difficult process of leaving a life. The only thing that will have changed is that they will now be able to write a lethal prescription.
BYOCKWhen are we going to discuss these deficiencies. You know, this is -- this end-of-life option is only a choice if there are other options available. Right now, as we're having this conversation, the options are between suffering or suicide. And I don't think -- I think we're a better country than that.
CAPLANWell, I just wanted to reinforce something that Ira Byock was saying. We did do a study, a review of Belgium and the Netherlands and we -- Barron Lerner, my colleague here at NYU, and I -- we found some very, very frightening slides down the slippery slope. So people being helped to die who were suffering from grief, people who were suffering from the loss of a child, children being helped to die, who clearly can't consent. And so there is a danger zone and it's big and we have to be alert to it, about where you go if you cross from empowering the terminally ill to a more general right, if you will, to assistance in dying, which can take you into place that I think we've seen historically aren't good to go.
REHMWhat about that, Mickey MacIntyre? Isn't that a concern for your organization as well as the population at large?
MACINTYREAbsolutely. Yes. I mean I do think that, you know, abuse of any system or inadequacies in any system make it very difficult, you know, for people to get exactly what it is that they want because then it breeds more restrictions or greater restrictions. The education that is necessary to be able to address everyone's end-of-life care needs is something that's vital, that needs to happen both for the consumer of the services as well as the providers.
MACINTYREYou know, I'm just struck by this conversation in Facebook tweet around the dentistry because it reminds me of why I got into end-of-life care, which was, you know, through HIV and AIDS in the '80s and a medical establishment that would not respond to that.
MACINTYREAnd I think we're seeing the same today as the medical establishment begins to respond to people who are older and ill or dying.
REHMAll right. Short break here. Your phone calls, your emails when we come back.
REHMAnd welcome back as we talk about the new bill just signed into law in California providing right to die to terminally ill patients. We have a number of callers, questions. Let's go first to Jordan in Rochester, New York. You're on the air.
JORDANHi Diane, how are you?
JORDANI had a quick question because I am a firefighter/EMT in Rochester and student of political science at Brockport. And I had a question about liability protections for doctors that would be administering the assisted suicide under this new law. My question is basically that with the issues that will inevitably arise based on the comment that was given earlier about how there's no concrete restrictions in place for the level of qualifications required for physicians to be, to be participating in the sign-off, required for the assisted suicide, I wanted to know what sort of protections this bill provides for those physicians to be able to act accordingly without fear of losing their job or their license.
REHMSure. All right, thank you. Dr. Caplan?
CAPLANWell, the basic protection is strong, and it basically says if you act in good faith, reasonably according to, if you will, peer judgment, you are indemnified. I can't even think, maybe Mickey knows a case, I can't think of one in Oregon or Washington where anybody has been prosecuted. On the other hand, I just repeat what I said earlier. You know, it's a two-doctor requirement, but it doesn't say you have to be expert in end-of-life care, an intensivist, an ICU person. It can be a dermatologist, an allergist, a general practitioner.
CAPLANThat may be something that the medical association wants to sort of up the standards on, but I wouldn't worry too much about prosecution. It just hasn't happened.
REHMTell me, Mickey, what are the requirements that a patient must meet before a doctor is permitted to provide a life-taking prescription?
MACINTYREWell, the person must be a mentally competent adult. In most states where the authorization exists, they need to be mentally competent, decisionally capable adult who has been diagnosed with a disease with a terminal prognosis of six months or less. In Oregon, for example, there's a residency requirement. In California, I believe there is, as well. They must be two verbal requests, a written request. There are certain waiting periods around that.
MACINTYREIf one of the two -- you know, if either of the two doctors believe that there's any issue around mental health, they do a referral to a mental health provider. In California, there is an additional written -- a written attestation by the individual prior to taking the medication itself.
REHMNow there is no doctor present, I gather, as the patient decides when, how or what?
MACINTYREWell, the what, they -- absolutely.
REHMI mean, they got the medication.
MACINTYREBut in terms of -- right. Once they have the medication, no, there is not a requirement that a doctor be at the bedside at the time that the medication is ingested. It is -- you know, the purpose of this is to be able to provide an opportunity for people in the very last stages of their lives, who have gone through a very difficult journey. We have never seen, in all of our 20 years of experience with this, someone take this question lightly. If not, it's the exact opposite. It's the end of a very long personal journey.
REHMDo you have a figure in your head about the number of individuals in Oregon who have been, who have asked for and been prescribed the medication versus the numbers who have actually used it?
MACINTYRESo in Oregon, it's about 1,110, almost 1,200 people have had the medication, and about 750 have ingested the medication.
REHMInteresting. So the idea of having it does not necessarily lead to using it.
MACINTYRERight, sometimes it's simply the palliative effect of having the medication. And not only is it the palliative effect of having the medication, but we've seen in Oregon and in Washington that the care that Dr. Byock is asking for actually gets better in those states as a result of the fact that those options are available. That's one of the reasons why the legislature in Vermont and was one of the things that the California legislature looked at, as well.
REHMAll right, and here's a message from a listener on our website, who says, I would have fewer misgivings about this kind of law if our nation had really firm commitments both to mental health care access and to lowering the chance a seriously ill person would fear that continuing to live would bankrupt a surviving spouse or keep a grandchild from being able to go to college. Dr. Byock?
BYOCKWell, that's exactly right. Right today, if you're seriously ill, you face an uncertain future of whether your symptoms are going to be well-controlled, whether your doctor will have the basic skills to communicate, and you're worried about being pauperized, becoming an indigent simply for being seriously ill and not dying quickly enough.
BYOCKAnd while I agree with much of what's been just said by Mr. MacIntyre, I disagree that things are really rosy in Oregon and Washington. I spend a fair amount of time there, and I used to practice in Vermont. And let me say that many, many people are getting very good treatment for their disease, diseases, in those states. But then during the last months, weeks and days of life, they are dying badly. They are not getting basic, adequate hospice and palliative care.
BYOCKAnd while Mr. MacIntyre asserts that people feel comfortable having that lethal prescription in their drawer, they would also feel comfortable if they knew that their family wasn't going to be bankrupted and that they would have a physician and a palliative care team or hospice team that could walk with them through these difficult courses. Now I keep wanting to just broaden the conversation a bit, Diane.
BYOCKThere are legislative actions that could be taken in California, Washington, Oregon, Vermont, that could actually fix things and reduce the sources of suffering. We could impose real curriculum change on medical and nursing programs, insisting that they teach whole-person care, including the basic skills of palliative, before awarding them degrees and then subsequently awarding them licenses to practice.
BYOCKThe states -- these states could report staffing levels and quality ratings of nursing homes, home health and hospice programs and hospitals so that people could make informed consumer choices and not go to the ones that are bad. In these states, we could begin to rescind the nursing home licenses of the lowest 10 percent of performers on quality and safety ratings and only give new licenses in nursing home -- for nursing home licenses to corporations that commit to the Green House model or to the Planetree models, to truly enlightened models of care that include adequate and skill sets.
BYOCKSo there are things that we can do, but notice we're not talking about them again this morning. We're simply talking about this fatalistic obsession about assisted suicide.
REHMA fatalistic obsession, Dr. Caplan?
CAPLANWell, I don't think it's a fatalistic obsession. I think it's partly an American obsession with autonomy, the right to choose, the right to have options, the right to want to make choices. I hear what Ira's saying, but the political question is this. We all know the health care system is broken. Are you going to fight the battle of fixing it over the right to choose assistance in dying, or are we going to take it as a serious political issue for all of us and say we still have a broken health care system, let's fight it out, you know, as a problem of the health care system, not a problem of choosing assistance in dying alone.
REHMAll right, let's go to Lenny in Tarpon Springs, Florida. You're on the air.
LENNYGood morning, Diane, it's a pleasure to talk to you.
LENNYI really have a problem with the incompetence and the uncaring nature of people involved with people who are ill to any degree. I've seen evidence of this. I'm sitting in front of a rehabilitation center, which is really a nursing home, and my wife is here, and she was in the hospital for four days for extreme abdominal pain, and they really were unable to diagnose anything other than constipation and two broken ribs.
LENNYSo four days later, because she's a Medicaid patient, they couldn't keep her there any longer, so they found this nursing home, and they happened to have a bed there. Well, it was nothing more than a bed. There wasn't even a pillow. I'm absolutely disgusted with the health care system and trying to trust people who drive Mercedes Benzes to take care of people that don't have any money for health care.
REHMAnd I think that that is precisely what Dr. Byock is focusing on. And we will do a program on improving the state of end-of-life care in the future. And I do want to be again transparent about my own affiliation with Compassion & Choices, which certainly helped me and my husband a great deal when he was in the last stages of his life. I have been a supporter and will continue to be a supporter. At the same time, I consider myself a fair and honest journalist, which is why all sides are being heard here this morning.
REHMLet's go to Mark in Argyle, Texas. You're on the air.
MARKThank you so much. I'm sitting here, literally my heart is pounding. Your program resonates. Four weeks ago today, my wife died in my arms, in my home, after a four-year battle with ovarian cancer.
REHMOh, I'm so sorry.
MARKShe was a college professor, as am I, and we were both very active in trying to educate ourselves on her disease. Well, during the end phases, the last seven months of her life, things digressed and went badly, and essentially her pain could not be mitigated, her nausea could not be resolved, and she died very badly. The system failed in many ways. What I would like to ask or say is that this is not indeed, this is not a theoretical discussion, an academic discussion, nor it is a political issue. It's really a discussion about when and how can we reform end-of-life thinking and treatment in the American health care system because from my perspective, it failed us very, very badly, and I hope that no one else will have to, for the next decade, endure this kind of mistreatment.
REHMAnd again, I offer you my condolences. I'm so sorry your wife had to suffer as she did. Now to that point, Dr. Byock, are there some situations that literally cannot have sufficient pain control, sufficient care to help a person who is clearly terminal get through that end-of-life stage comfortably?
BYOCKDiane, dying is hard. It's been hard since there have been human beings. But these days we make it much, much harder than it needs to be. In fact, just to speak specifically to your question, there is no physical pain that we cannot control and make -- and alleviate these days. We have general anesthesia, if we need it, for people who are in severe pain. We have medications that can ease the way so that people can die gently. We rarely have to use them, but when we do, we have them. Let me -- let me say before we close...
REHMHold on one second.
REHMLet me remind you, you're listening to the Diane Rehm Show. Go ahead, Dr. Byock.
BYOCKI hear stories, heart-wrenching stories like Mark's so often, virtually every day. You know, the people on this panel and listening to us, we have a wide range of opinions. We will never agree on the issue. All of us are not going to come to agreement on the issue of physician-assisted suicide. We should agree to disagree and continue the vigorous debate. But could we radically agree to address the roots of the crisis that surrounds dying in America?
BYOCKThere are legislative efforts, there are regulatory efforts, there are curriculum efforts that we could do as a caring, loving nation to fix this particular crisis, and I...
REHMAll right, Dr. Caplan, I know...
BYOCKAnd we just need to turn attention to that.
REHMAll right, Dr. Caplan, I know you want to jump in on our last caller.
CAPLANSo sorry to hear that story. I hear the story many times. I wanted to make this point. It's a small number of people using assistance in dying in Oregon. It's really tiny. If you looked at the total number of deaths, not many use it. But I have met people who say, I don't want palliative care. I don't want to go through the process of pain control. If I'm dying, I want to go on my own terms, and don't give me the next two months or three months, even if we're in hospice, even if the circumstances are full of dignity and emotional support and caring and love and pain control.
CAPLANSo part of the debate is about what is a good death, how does that happen, what do you want to go through. That said, again I'll come back and support Dr. Byock. If you make death miserable, and it's pretty miserable for a lot of folks as we hear, this option becomes perhaps more than an option, it starts to become attractive, and we don't want that.
REHMAnd finally to you, Mickey MacIntyre. What is the ideal end-of-life situation in your own mind?
MACINTYREThe ideal end-of-life situation provides the opportunity for the patient and their family to access the exact care that they want, nothing more and nothing less. If that's curative therapy, if that's palliative therapy, if that's intentionally medically managed, you know, ultimately the patient and their doctors should be able to work that out, and the individual should be able to have access to the resources necessary in order to enjoy a high quality of life until their death and a peaceful and -- a peaceful death that honors the kind of life that they've had.
REHMMickey MacIntyre, chief program officer of Compassion & Choices. Dr. Ira Byock, he's the author of "The Best Care Possible." Arthur Caplan, director of the Division of Medical Ethics at New York University Langone Medical Center. And earlier, you heard from Ben Adler of Capitol Public Radio in Sacramento, California. We, I'm sure, will continue with these discussions as time goes on. I thank you all for participating.
REHMAnd thanks for listening. I'm Diane Rehm.
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