Many people hope to die peacefully at home surrounded by their loved ones, but unfortunately it usually doesn't turn out that way. Thirty percent of Americans die in nursing homes, more than half die in hospitals and nearly half of those people spend their last days in intensive care units.
In his book The Best Care Possible, Dr. Ira Byock argues that the way most Americans die is a national disgrace — an ethical, moral and economic crisis that will get a great deal worse as the baby boomers age.
Byock, director of palliative medicine at Dartmouth-Hitchcock Medical Center, says that modern medicine has provided unprecedented power to treat disease and help people live longer, but has also changed the focus of health care.
"We have a disease-treatment system more than a health care system these days," Byock tells NPR's Neal Conan. "That's not necessarily a bad thing, but it's not enough. We have to begin to care well for people who are living with these diseases, not simply the physiology and pathology itself."
Byock describes his decades of work in hospice and palliative care that inspired his quest to transform end-of-life care.
On his patient 'Maxie'
"Maxie ... never wanted to talk about the end of life. She'd never made out an advanced directive, a living will or power of attorney for health care, like, you know, most of Americans. ... Only about 30 percent of adults have these documents. ... But then she became seriously ill. ... It was a shock to the family.
"They couldn't imagine that there was anything worse than their dear mother and mother-in-law ... aunt and grandmother dying. And yet, they found out — as so many of our patients eventually do — that there are worse things than having someone you love so much die. There's having them die badly, suffering as they die.
"And maybe the only thing worse than that is looking back and realizing in retrospect that much of their suffering was unnecessary."
On consulting patients on advanced directives
"When I talk to people and encourage them to fill out these advanced directives, these days I don't start by saying, 'This is how you can protect yourself or retain control over your body.' I say, 'This is a way for you to take care of your family if a crisis happens and you're unable to speak for yourself, and they, those that you love, will be left to struggle with decisions about your treatment and care.'
"... You can perhaps lessen the burden that they're going to feel as they struggle with these decisions by shouldering it a little bit, by telling them what you think you would want. They're still going to have to fit those values and preference to the particular condition and treatments being offered, but at least you can lighten the load a touch."
On the challenges of delivering bad news to patients
"The open secret among clinicians is we really care about the people who are our patients. ... That's not unwholesome. ... We get close to these people, and I think ... aren't clear in their communication. It's wrong. It's not good practice.
"But in fact, we hate to make people cry. And it sounds funny to say, but in fact I've seen so many good clinicians — oncologists come to mind, but also cardiologists — who are reticent to tell somebody that their disease is incurable.
"... I know, because I've been doing this for a long time, that clarity, although it may cause acute grief, is actually a gift in this sense, and it's the right thing to do. In this case a sharp cut hurts less."
NEAL CONAN, HOST:
This is TALK OF THE NATION. I'm Neal Conan in Washington. Later in this hour, excerpts from oral arguments as the Supreme Court begins three days of hearings on health care. Given that, there is no better day to focus on the decisions that patients, their families and their doctors make at the end of life.
While nearly everyone hopes to die peacefully, at home, surrounded by people they love, it usually does not turn out that way. Thirty percent of Americans die in nursing homes, more than half in hospitals, and nearly half of those spend their last days in intensive care units.
In a new book, Dr. Ira Byock argues that the way most Americans die is a national disgrace, an ethical, moral and economic crisis about to get a great deal worse as the baby boom generation ages. He adds that a difficult but fixable set of issues has been made worse by political polarization, by advocates of physician-assisted suicide who accuse doctors of forcing patients to suffer, and by vehement elements of the pro-life movement who accuse them of promoting a culture of death.
Doctors, call and tell us about the challenges you face when you talk with patients and their families about the end of life. Our phone number is 800-989-8255. Email firstname.lastname@example.org. You can also join the conversation on our website. That's at npr.org. Click on TALK OF THE NATION.
Later, as mentioned, David Savage will join us after the first day of the Supreme Court deliberations on the health care law. But first, Ira Byock, director of palliative medicine at Dartmouth Hitchcock Medical Center in Lebanon, New Hampshire - his new book is called "Best Care Possible," and he joins us from studios at Dartmouth. Nice to have you with us today.
DR. IRA BYOCK: Thanks, Neal, great to be with you.
CONAN: Nice to have you back on TALK OF THE NATION. Modern medicine has become very good at treating disease. You say that's not good enough.
BYOCK: Well, I applaud the fact that we have so much unprecedented power in medicine to treat disease and help people live longer. It's great. But in fact, we have a disease treatment system more than a health care system these days. That's not necessarily a bad thing, but it's not enough.
We have to begin to care well for people who are living with these diseases, not simply the physiology and pathology itself.
CONAN: You illustrate a lot of your points with stories of patients at the end of life, and they're not - some of them are uplifting stories, but some of them are not, and I wanted to ask you to begin by telling us the story of the woman that everybody knew as Maxie(ph).
BYOCK: Well, Maxie, you know, never wanted to talk about the end of life. She'd never made out an advanced directive, a living will or power of attorney for health care, like, you know, most of Americans; something only about 30 percent of adults have these documents.
So in New Hampshire, when she became so seriously ill, there was actually no one who had clear authority to speak for her. She was a woman. Again, like so many Americans who are now living with chronic illness, she had several chronic illnesses, including diabetes and heart disease and vascular disease as a consequence.
But then she became seriously ill. She had a stroke. It was appropriately diagnosed in an emergency department as likely coming from infected heart valves, and she ended up in the ICU. It was a shock to the family. She was a vital woman, and they couldn't quite believe it.
They couldn't imagine that there was anything worse than their dear mother and mother-in-law, aunt uncle – aunt and grandmother dying, and yet they found out, as so many of our patients eventually do, that there are worse things than having someone you love so much die. There's having them die badly, suffering as they die.
And maybe the only thing worse than that is looking back and realizing in retrospect that much of their suffering was unnecessary.
CONAN: And unnecessary, in part you argue in this book, as a result of politicization.
BYOCK: Well, I think the ironic thing is, is that really is a national crisis by any measures. People are - too many people are suffering still as they die. Too many people say that they've have fallen through the cracks and that they and their family are suffering. Caregiving, family caregiving has become a diagnosis in and of itself. I could go on and on.
And yet this is one national crisis we could actually fix. We have the resources, we have plenty of money that we're already spending at the end of life. We're just not getting our return on our investment. We have the technology and expertise to do this well.
Our team at Dartmouth Hitchcock Medical Center is showing that you don't have to gave up treatment for your disease to get a comprehensive team approach care for you and your family's quality of life. You know, dying is hard, but it doesn't have to be this hard.
And we're showing, and a scattering of teams across the country are showing, that it can be done well. You can get state-of-the-art treatment for your disease as well as getting help for your comfort and quality of life, support for making complex, ever more complex, frankly, decisions about your treatment and care.
You don't have - right now, because we are sort of a disease treatment system, without ill intention but without mistake, we sometimes, you know, inadvertently effectively abandon people to figure this stuff out as if they were the first people on the planet to ever go through this.
CONAN: And I think part of the value of your book and part of the part that makes it difficult to read is the detail you go into to explain just what it is by - what you mean by dying badly.
BYOCK: Well, I think that's part of it. You know, in fact, I've been thinking a lot about imagination. On the one hand, our imagination limits us because we can't imagine anything worse than our loved one dying. But it turns out, as I alluded to, that's really just a limit of our imagination. There are things that almost anybody would look back and say are worse.
But on the other hand, our imagination limits us from realizing that there might be something of value, real importance to the person who is leaving this life and to their family during these inherently difficult times of human life, and that concomitant with distress or discomfort and this poignant, you know, sadness that comes with leaving a life, concomitant there can be things of value.
I can't assert that in lecture or - I try - or in an essay to students, but I have to tell it in stories, or I have to have students with me and physicians in training so that we can have them experience it, you know, witness it with their own eyes and ears.
CONAN: Tell us about the story, the patient he(ph) calls Steven Rowlands(ph), when you tell him and his family you're dying.
BYOCK: Yeah, he didn't want to hear it. And, you know, we had to go through it in detail. You know, he didn't have quit in him and wasn't about to hear that he was dying. And so he really, you know, fought us, really, to have every treatment possible.
We talked about, you know, how CPR in his circumstance simply would not work. Well, he didn't want to hear the data. He didn't want to hear that it really only works when you're seriously ill on TV and not in real life. As his daughter said, he didn't have - just doesn't have quit in him.
And unfortunately, that didn't make him immortal. It just made his dying harder, try as we might to make it easier for him and for his family.
CONAN: Want to hear from doctors and nurses today. What do you - what challenges do you face when you talk to patients and their families about the end of life? Give us a call, 800-989-8255. Email email@example.com. And we want to get to calls in a few minutes. But I wanted to ask you, you write in an essay, a chapter about informed consent about your friend, Dr. Moray(ph) - I suspect it's pronounced - who is probably the most informed patient you've ever had.
BYOCK: It's Herb Mauer(ph), actually.
CONAN: Mauer, excuse me.
BYOCK: Yeah, one of the most brilliant physicians I've ever had the pleasure of working with, and he became a good friend, quite a close friend. And, you know, Herb knew everything about his diagnosis. He made his diagnosis. He was an oncologist before there was such a thing.
And when Herb got what's called painless jaundice, when he turned a little yellow, he knew that this was not a good sign. There's only a handful of things that do that. He had, you know, a CAT scan, and he ended up having something called cholangiocarcinoma - he sought a very aggressive treatment.
He had a Whipple procedure, a big surgery, and sailed through it. He had chemotherapy and radiation treatments thereafter. He knew, because of the pathology showing there was some spread of the cancer, that he could not be cured. But life was good, and life is sweet, and he wanted to live it at all possible.
So he had a number of procedures over the coming 18 months - interventional radiology procedures to either stop bleeding or unblock bile ducts and the like. Every time he came into the hospital for such a procedure, he made sure that we knew that he wanted all treatments possible as long as his life was worth living, and had – and the treatments could meaningfully keep him so that his life, his quality of life was worth living.
But if his heart stopped, he wanted to make darn sure everybody knew there was a DNR order on his chart.
CONAN: Do not resuscitate, yeah.
BYOCK: Do not resuscitate. He wanted to wear that bracelet. He wanted to make sure that people knew that his wife, Leetha(ph), who's also a physician, was the power of attorney for health care and made darn sure that that was scanned in to his medical record.
And with that, he - you know, he was not in denial, but as long as his life was worth living, and as you've probably read in the story, that included having an appetite, and looking at me, he said - and I'm enjoying my meals, Ira. You know? It was really bringing gut instincts to this process of decision-making.
As long as his life was worth living, well, he was worth - wanted to have treatments that were not too burdensome or wouldn't otherwise cause serious complications. Eventually he died, quite gently, literally surrounded by his family and those who loved him. He really just dissolved out of life. It's really a story for me that epitomizes this notion of dying well, not in the way of, you know, dying right, but dying well - because I've got to tell you, Herb was well as a human being.
He was well within himself during his last days of life.
CONAN: So both senses of the word well, dying well - in other words, he was well enough to still enjoy his life - but also dying in a dignified manner.
BYOCK: He was well in the sense of any of us, you know, having a sense of well-being and being right with ourselves, if you will.
CONAN: We're talking with Dr. Ira Byock. The book is titled "The Best Care Possible: A Physician's Quest to Transform Care Through the End of Life." We'd like to hear doctors today. Call and tell us about the challenges you face when you talk with patients and their families about the end of life. Yes, we'll hear from nurses too - 800-989-8255. Email us, firstname.lastname@example.org. Stay with us. I'm Neal Conan. It's the TALK OF THE NATION from NPR News.
(SOUNDBITE OF MUSIC)
CONAN: This is TALK OF THE NATION from NPR News. I'm Neal Conan. Dying is hard, Dr. Ira Byock writes in his new book, but it does not have to be this hard. A transformation is needed in the way our society and culture, not merely our health care system, cares for seriously ill people and supports family caregivers.
It's a crisis, he says, that will only get more serious as baby boomers continue to age. You can read more about what's driving the problem and how to fix it in an excerpt from the book. That's at npr.org. Click on TALK OF THE NATION. It's called "The Best Care Possible: A Physician's Quest to Transform Care Through the End of Life."
Doctors, call and tell us about the challenges you face when you talk with patients and their families about the end of life, 800-989-8255. Email email@example.com. You can also join the conversation on our website. Go to npr.org and click on TALK OF THE NATION.
Let's start with Matthew(ph), Matthew with us from San Antonio.
MATTHEW: Hi, Neal, thanks for having me.
MATTHEW: You know, this kind of plays off of what your guest said about only 30 percent of Americans having some sort of advanced directive, is - while I care for critically ill patients in the ICU, we found that there was just a lack of communication between patients and their family and between patients and their medical team so that no one really knew what the wishes of the patients were or that even if the patient knew, his family either didn't know or disagreed with the patient.
CONAN: Dr. Byock, a lot of your book is about communication and responsibility therefore.
BYOCK: I think patients and families, you know, people don't like to talk about it. You know, in fact, if there's one sentence that sort of encapsulates our orientation toward illness, dying and death, it's I don't want to talk about it. But in fact, since we're mortal, again, not talking about it just makes - leave us less prepared and leaves our families less prepared.
When I talk to people and encourage them to fill out these advanced directives, these days I don't start by saying this is how you can protect yourself or retain control over your body. I say this is a way for you to take care of your family if a crisis happens and you're unable to speak for yourself, and they, those that you love, will be left to struggle with decisions about your treatment and care.
You can't stop that, but you can do several things. You can give them clear authority to speak for you so that it doesn't become an area of conflict. You don't have to get an ethics committee or a court involved. You can - by telling them who is going to speak for you and what you think you would want in those circumstances, you can - first, if there's multiple stakeholders, if you will, if you have a spouse and several adult children, you can probably prevent any conflict in the family from arising, which most of us would value doing with those we love.
And secondly, you can perhaps lessen the burden that they're going to feel as they struggle with these decisions by shouldering it a little bit, by telling them what you think you would want. They're still going to have to fit those values and preference to the particular condition and treatments being offered, but at least you can lighten the load a touch.
CONAN: Matthew, can you tell us of an incident where you really encountered this problem? I think Matthew's left us, but we thank you very much.
BYOCK: I think for any critical care physician, I spend a lot of time in the ICUs these days, it's really endemic. So many families struggle. A mom or dad has a stroke or a severe heart attack, and they're left without a pulse for a few minutes and not waking up, and now how do you make that decision.
You know, how do you know what that person would want? In fact...
CONAN: Especially when so many people say we can leave these decision to when(ph) it's closer to the time.
BYOCK: Right, always, that's right. It's - you know, it's always too soon until it's too late.
CONAN: Let's see if we can go next to - this is Sara(ph), Sara with us from Kankakee, Illinois.
SARA: I'm a medical social worker, and I've worked in a home care and hospice for about eight years now. And one of the issues that I run into, because I address advanced directives and that kind of thing with patients, one of the things that I've been seeing is that doctors are - they're neglecting to be very direct with their patients in saying, you know, this is terminal, and you know, you will die from this.
So then I - the struggle is, you know, patients asking me: Am I dying? You know, well, talk to your doctor. It's a struggle.
CONAN: I can understand it's a struggle. Why do you think doctors seem to be reluctant?
SARA: You know, I'm not sure. I wonder if maybe, maybe attached to working with patients is the sense of failure or success. And so if they admit to a patient, you know, you are dying and let's talk about that, let's talk about palliative care, hospice care, if maybe that would feel like a sense of failure - I'm honestly not sure.
CONAN: And there's no mechanism in which you can ask them: Why didn't you, in this circumstance, be a little bit more clear?
SARA: Correct, correct, and it puts me in a tough spot too, because I'm not even supposed to say hospice to a patient unless there's a referral. So then that makes it very difficult, you know, in that case I'm in a bind. I don't want to lie if the patient if they say - and I've had patients say to me, say am I going to die from this. So again, that just puts me in a tough spot.
CONAN: Dr. Byock, you're describing a situation where you work in the Dartmouth Hitchcock Medical Center, a pretty sophisticated place. Understand Sara's problem?
BYOCK: Oh, so – so, so well. I think it's only partly that it's a failure on the part of doctors. I mean, that's part of it, but it's not exactly our pride that gets wounded. It's actually our emotions, frankly. The open secret among clinicians is we really care about the people who are our patients.
We really, in many ways, love our patients. That's not unwholesome. That's actually, you know, has always been the driving force within health care, medicine, nursing and social work, chaplaincy - you can go on and on. We get close to these people, and I think - I'm not apologizing for doctors who don't - aren't clear in their communication. It's wrong. It's not good practice.
But in fact, we hate to make people cry. And it sounds funny to say, but in fact I've seen so many good clinicians. Oncologists come to mind, but also cardiologists, who are reticent to tell somebody that their disease is incurable or to actually say, yes, Joe, I think at this point we can say you're dying, or to say your mother is dying and actually say it that clearly, because it makes people cry.
I know, because I've been doing this for a long time, that clarity, although it may cause acute grief, is actually a gift in this sense, and it's the right thing to do. In this case a sharp cut hurts less.
CONAN: You also write that that kind of clarity, that kind of statement, can also provoke anger.
BYOCK: Well, it can, but that's part of the job too. You know, if the truth causes somebody to grieve in a way that generates anger, it's not real. So - I mean, it is real, it feels real, and believe me, I've had that hot wind directed at me from time to time, and it's not fun. But it's a grief response. It's not directed at you because you've done something wrong.
You know, Neal, all of this can be taught. But honestly - and I say this, I'm proud to be a medical educator. I'm really proud to be part of the faculty at Dartmouth Medical School. But even here, and we do it as well as most, I think we're failing our medical students.
Medical students and doctors are sensitive, caring human beings, but they weren't taught to communicate at this level in grade school or in high school or in college. If we don't teach it in medical school, and we don't reinforce it in residency training, is it any wonder that they get out into practice, and they don't do this well? It still feels awkward.
You know, they ultimately learn it on the job, but mostly they don't learn to do it very well. And so I think, again, as citizens and consumers, really, we all have to be pushing on the medical schools and residency training programs. It's not OK that even today we're graduating a new generation of medical students and doctors who I have to tell you are as bright as any people I know and caring as any people I know, and we're setting them up to fail in serving an aging and increasingly chronically ill population at the end of life.
It's not right, and it can be fixed.
CONAN: Sara, thanks very much for the call, and we wish you luck in your situation.
SARA: Thank you.
CONAN: Dr. Byock, as you write this book, you talk about the tension between people who want to press for every possible treatment, to fight against what may be the inevitable until the very end, even past the point of seeming sanity. And yet there is the case of an AIDS patient you write about, Darren(ph), who, well, undergoes - it must have been a billion different treatments.
BYOCK: Remarkable case. You know, this work will keep you humble. Everybody connected in this case - and there were probably 100 or more physicians involved - "knew," quote, unquote, that Daren was going to die. He was riddled, not just with HIV disease, but with opportunistic infections. He was ventilator-dependent. He had multiple complications, extensive blood clots and the like.
And we were involved. We were asked to be involved with the critical care doctors when it became clear that his life was threatened, really, to support him and making sure that his symptoms were well managed, but much more so to support his family in this incredible struggle that they were going through, in this emotional struggle and turmoil of losing their very beautiful son.
As it turned out, in helping them to hang in there and just get through each day, supporting them and supporting Daren, really and truly, a miracle happened. And he's with us today - quite well, in fact.
CONAN: Hmm. Here's an email from Karen(ph) in Phoenix: I'm the director of clinical services for Odyssey Hospice in Phoenix, Arizona. We have this talk with potential hospice patients every day of the year. Sometimes it's the patients, sometimes the family, sometimes the physician who can't bring themselves to make the ultimate decision to transition from aggressive treatment to comfort care. The word hospice brings chills to some. They simply avoid the subject. Many times we get a call from a hospital ER with a patient with whom we've had that chat, only to find they're unresponsive and actively dying. We bring them on to our hospice service. They die hours later. Neither they nor their family members receive the full benefit of hospice services. We feel a sense of failure when we don't get the opportunity to work with our patients and families over weeks and months.
BYOCK: If I can respond, I think that's a very poignant situation that I also struggle with. You know, hospice really is the gold standard of care through the end of life, and too many people are getting it too late. Even though hospice usage is expanding, the length of service on hospice care continues to fall. Right now, it's down to 19 days, median, which means that people aren't - you know, hospice is increasingly not doing end-of-life care. We're really doing brink-of-death care.
But the problem, frankly, is that it's not enough in America to be dying to get hospice care. Under Medicare, at least, you have to also agree you are dying. And I have to tell you, many of the patients that I speak with in palliative care who recoil, as Karen mentioned, from the word hospice, aren't about to agree they are dying. And you have to be willing to forego treatments directed at your disease and intended to help you live longer.
Now, that either/or choice, which really keeps people in the acute care system longer than many - is in many of their best interests when they would have absolutely accepted hospice care if they could continue to get cancer care or care for their congestive health failure, that choice is not imposed by some principle of clinical therapeutics or by some principle of medical ethics. It's solely imposed by a line in the Medicare statute that created the hospice Medicare benefit. It's not even part of hospice, quote, unquote, "philosophy."
So we can get - dissolve that. Again, if we could talk about these issues, if they weren't so, sort of, radioactive, now, in our culture to talk about, this is one policy issue that we could make go away. We know that hospice, when it's given with active disease treatment, not only improves comfort, but lengthens people's lives. Studies have now pretty clearly shown that.
We know that concomitant hospice care with disease treatment actually decreases costs during the last six months of life, because the more confident people are of getting their needs met at home, the less likely they are to want to come back to the hospital. But that statute keeps us dividing what should be a smooth continuum of care.
CONAN: Dr. Ira Byock, author most recently of "The Best Care Possible: A Physician's Quest to Transform Care Through the End of Life." You're listening to TALK OF THE NATION from NPR News. Let's get Amy(ph) on the line, Amy with us from Detroit.
AMY: Hi. Yes. My name is Amy Hanson(ph), and I think what I find is most difficult for patients and patient's families is addressing code status. And in the medical world, we have different codes, A, B and C, and C being do not resuscitate, and then code A being full CPR, ventilators, machines, the patients and family members not wanting to be the ones to sign a slip, saying, do not resuscitate.
They feel that that's giving up on themselves or giving up on that family member. And it's understanding and being available to help patients and family members through that, and understanding that it's not them that is hurting or giving up on their family member, but it's just the end of the course of the disease and the patient.
CONAN: Amy, is there a palliative care unit there at your hospital?
AMY: Yes, there is, and we do get referrals, quite frequently, for that. And that's the first thing we look at in the charts, is looking at the code status and what has been discussed. That's a main concern of ours, to help families and patients with that kind of difficult decision.
CONAN: Thanks very much for the phone call. Appreciate it. Dr. Byock, before we let you go, there's just a couple of minutes left. We're about to go to a segment where we're talking about the Supreme Court review of the Affordable Care Act, the health care law that was approved by the administration a couple of years ago. As you also know, clearly the Medicare budget is very much in the news. Are we talking about the right things?
BYOCK: No. Certainly not. We have so many issues that we could come together on. I think we've been pinned down by the culture war for far too long. You're seeing it play out with the Affordable Care Act, which, as you know, just factually, so much of that act came out of social conservative ideas, really good ideas, that have been embedded and have long had bipartisan support. It wasn't until the most recent debate over health care reform that these ideas, which had, I thought, been well-received by the Obama administration and implemented within their proposals, suddenly became part of the polarized fight in the country.
It's a bit silly. The Affordable Care Act actually does some very helpful things, just structurally. It begins, finally, to align payments that doctors and hospitals get with quality rather than quantity. And that's really a good thing. If we actually want what I think almost 100 percent of Americans say they want, which is individualized decision making in an intimate relationship with our doctors, personalized to our values and preferences and our families, we have to measure quality, not just how many procedures or tests are ordered or performed. The ACA begins - Affordable Care Act begins to put us in that direction, and that, at least, would seem a good thing.
CONAN: Dr. Byock, thanks again for your time. Appreciate it.
BYOCK: Thank you.
CONAN: Ira Byock, "The Best Care Possible." You can read an excerpt at npr.org, click on TALK OF THE NATION. As we mentioned, we'll be talking about the Affordable Care Act when we return and it's first day at the Supreme Court. David Savage will join us. It's the TALK OF THE NATION from NPR News. Transcript provided by NPR, Copyright NPR.