End-of-Life Care: The Long Conversation
By Amy Lynn Sorrel Texas Medicine April 2015

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Profile — April 2015

Tex Med. 2015;111(4):57-62.

By Amy Lynn Sorrel
Associate Editor

"When we can have these conversations, it turns out that our clinical practice becomes a lot more authentic and satisfying because you actually can achieve valuable clinical goals even when you can't cure someone."  

California palliative care specialist, author, and consultant Ira Byock, MD, calls the issues surrounding end-of-life care "a public health crisis." But he says many of the same solutions to improving the health care system overall — shared decisionmaking, advancements in medical education, better payment and delivery structures — apply equally to this area of medical care. "Part of the achievable goals of health care should be to help people die well," says the executive director and chief medical officer for the Institute for Human Caring of Providence Health and Services, a 35-hospital health system serving five western states.

Texas Medicine spoke to Dr. Byock for a preview of his upcoming keynote address during the general session of the Texas Medical Association's annual policymaking and educational meeting, TexMed 2015, in May. 

Texas Medicine: As an expert in end-of-life care, you call this this one of the biggest national crises of our day. What do you mean?

Dr. Byock: The Institute of Medicine (IOM) report Dying in America, released in September, was a comprehensive critique of what is a true public health crisis that persists in America. The institute's report could legitimately have been called Dying Badly in America because it once again details systemic deficiencies and problems in medical education, in medical practice, in the way health care is financed, in the staffing of long-term care and home health care, and basically in our cultural approach to serious illness and dying. At 18 percent of the gross domestic product, we Americans are not getting a good return on our investment. Many European countries are spending much less and getting measurably higher quality care. Nowhere is this gap more apparent than when it comes to serious, incurable illness, and the experience of dying patients and their families. After three decades of progress in hospice and palliative medicine — although we have yet to transform the health care system — we have demonstrated that much better care is both feasible and affordable. I'm on the road, and I spend time at my computer writing opinion pieces and academic articles because I know this is one national crisis we can solve. 

Texas Medicine: What makes this a crisis?

Dr. Byock: People are dying badly. People are dying in ways they would not have wanted, in places they would not have wanted to die if anyone had asked them. But of course, we don't ask them. Now let me just say, this crisis is unnecessary, and it can be fixed. But there are no villains here. We have all grown up in traditions and with attitudes and assumptions that are not serving us in these unprecedented times. And physicians are so well-positioned to assert not only clinical leadership, but also cultural leadership. We've yet to make even one person immortal, so our commitment to excellence and giving the best care possible to each and every patient has to extend to making sure that their comfort and quality of life is as good as it can be, that their family is as well-supported as they can be, on their own terms.

Texas Medicine: What do you consider the "best care possible"? 

Dr. Byock: I realized 30 years ago that was the one thing I could be sure of that every single person I met wanted for himself or herself and for those they love. What that meant was unique to each person, but I began to realize there was a way of discerning what the best care possible meant to each person at each point in time. And it became my role as a physician to help them do that. So while the best care possible is not a one-size-fits-all model, there is a way for physicians working with patients and families to clarify what that is at any given point in time.

Texas Medicine: How so? What is doctors' role in that conversation?

Dr. Byock: As physicians, we bring our medical expertise to healing injuries and fighting disease and prolonging life, and that's as it should be. But we haven't yet made one person immortal. At some point in time, more disease treatment does not equate to better care. So we have to broaden our perspective. I've come to believe that the secret sauce in providing the best care I possibly can to each and every person is called shared decisionmaking. I was born in 1951, and growing up, medical shared decisionmaking happened when the doctor shared his decision with you. It's no longer that. Nowadays, we recognize that patients come to the doctor-patient relationship already expert in their values, preferences, and priorities. And we doctors are experts in the diagnostics and therapeutics of their condition. Together, in shared fashion, we can apply the best medical science and technology consistent with the values, preferences, and priorities of each person in service of achievable goals of health care. And the fact of mortality is a legitimate backdrop for having conversations about life-prolonging treatment. 

Texas Medicine: Is this the domain of just palliative care specialists or all physicians?  

Dr. Byock: If you think your patients are too young, or too healthy, or you're just a specialist, I beg to differ. At least 70 percent of practicing physicians participate in the care of frail elders or seriously ill people whose lives are at serious risk. Obstetricians and gynecologists tell me they don't ask about advance directives because, after all, the women they care for are young and healthy. So was Karen Ann Quinlan. So was Nancy Cruzan. So was Terri Schiavo. I know, having practiced emergency medicine for years, and now palliative care, that sometimes young, healthy people become suddenly seriously ill. In my world, it's not even uncommon. They ought to have a chance to have spoken for themselves, at least in naming someone they trust to speak for them, but also in expressing their values. When we can have these conversations, it turns out that our clinical practice becomes a lot more authentic and satisfying because you actually can achieve valuable clinical goals even when you can't cure someone. 

Texas Medicine: Why then is this such a difficult, controversial topic? 

Dr. Byock: There is something inherently aversive about talking and thinking about dying and death. Physicians are selected for our warrior trait: We are supposed to fight against death and preserve life. It's certainly why I came into medicine. But if you want to serve real human beings, we have to think more broadly than that. What I've learned is, human beings are whole people: They have bodies and needs for medical treatment and bodily comfort, but they also have emotional, spiritual, and social parts of their person. And to be a good doctor, I need to attend to all of that. This is sort of the last taboo, and like most taboos, there is a literal superstition that surrounds it. There really is an unspoken feeling in America that if you talk about [death], you make it more likely to happen. Well, it's not really true. You can talk about it, or you can not talk about it, and it's still going to happen.

Texas Medicine: Do you feel like end-of-life care has been politicized and there are misconceptions that create barriers?

Dr. Byock: It's been politicized in terrible ways. This one cuts across party lines. We are all going to die. We all love our parents, our spouses, our children. We all want the best care we can possibly give them. And let me get political having said that: I don't think it's a good idea for doctors to be given authority to write lethal prescriptions. But there's a fear of dying badly, and frankly a loathing of the medical profession, that fuels ever-growing support for legalizing physician-assisted suicide.* There is a big difference between helping somebody die gently through hospice and palliative medicine, and the skills that really should be part of any doctors' skill set who takes care of seriously ill people — there's a big difference between that and intentionally ending a person's life. I'm not from Texas, but I’m a proud political progressive, and I'm here to tell you that physician-assisted suicide is not an extension of anybody's personal freedoms: It is a capitulation to our failed social responsibilities. And our profession, on behalf of society, is at the tip of this spear. (*TMA policy opposes physician-assisted suicide.)

Texas Medicine: Is more education needed? Whether for patients, physicians, society as a whole?

Dr. Byock: Everybody needs more education. And to some extent we need common education. The book I wrote, The Best Care Possible, is actually being read in medical schools, but it's also being read by the general public. There is a common framework in which we can engage in shared decisionmaking that acknowledges our mortality, and absolutely make every good use of medical technology. This is not about rationing, or giving up, or any of that. It is about using the best of our contemporary, unprecedented technology in service of protecting and preserving life, while acknowledging that at some point in time, more treatment is not better care, and that part of the achievable goals of health care should be to help people die well. I have the remarkable experience of witnessing and at times helping people achieve a sense of well-being during the last months, weeks, even days of their lives. And I have to say, that's the most clinically exciting thing I've ever been part of. And it is the highest health outcome I could ever hope for a patient. 

I also think physicians have been failed by the medical education system. Many young physicians I have the privilege of meeting and teaching graduate without having been taught the basic skills of guiding and counseling seriously ill and dying people through the most difficult but normal times of human life. I don't think that's their fault. I think it's our fault as medical educators. Ironically, we still teach labor and delivery, prenatal care, and childbirth to every medical student — even though very few go on to deliver babies — but in a four-year curriculum, we teach 20 hours or less of palliative and hospice medicine — even though the large majority of physicians contribute to the care of seriously ill and dying patients.

Texas Medicine: What do you think about tools like POLST (Physician Orders for Life-Sustaining Treatment) and advance directives, for which Texas is considering creating an electronic registry? 

Dr. Byock: Texas has been on the forefront of a lot of this, grappling with some of the difficult ethical and systems issues that result in this public health crisis. Some doctors are very well versed and know a lot about the clinical use of the advance directive and POLST forms and how to engage in authentic shared decisionmaking with patients and families. But I don’t think the majority do, and there's a lot of room for improvement both in undergraduate education and residency and fellowship training, but also in continuing education. I applaud TMA for calling attention to this. This is an area in which we know what best practices look like, and we know that much better care is associated with significantly lower costs because the more you plan and clarify achievable goals, and the more you invest in coordination, in crisis prevention, and in early crisis management, the less time people spend in hospitals and ICUs (intensive care units). So we are the value equation. 

Texas Medicine: It sounds like you favor these tools and you see them often. Can you comment on what other states are doing?

Dr. Byock: Yes, I do. And some states seem to be doing this better than others. But there's more local variation than statewide variation. Some institutions and health systems do it better, some communities. I was just up in Everett, Wash., a community that's deeply engaged in having these conversations. And that's reflected in the [federal] health service statistics: where people are spending their time, how many days in the ICU, how many days in the hospital, number of days in hospice care, where people die — all of those measures reflect that level of engagement. 

Texas Medicine: Do you see a need for protection of physicians' conscience in this arena versus government-mandated care? 

Dr. Byock: Every state and every hospital I'm personally aware of has a policy that allows physicians to decline to provide treatment they feel is not beneficial, and we have to be courageous enough to use that right at times. This is why we work in teams. When those things happen, this is a time when a palliative care team certainly should be involved. Pull in the people who do this day in and day out. 

Texas Medicine: What do you think about the use of hospital ethics committees in times of dispute? 

Dr. Byock: That's a good professional use of an ethics committee. I would only say that before the ethics committee gets involved, or at least concomitant with the ethics committee getting involved, get a palliative care team involved. Most places that have long-standing ethics committees have seen their consults diminish when palliative care is available in their hospital or health system. And the basic reason is, if you can continue to keep a difficult situation within a clinical realm, responding to people's distress with a clinical framework, it's usually better than having to be framed as an ethical issue or conflict. So you can address the same situation, the same level of disagreement, or anger, or discord, or misunderstandings in families by using clinical teams and clinical frames and skills. Often the outcomes are more satisfying than dealing with it through ethics. But it's not always possible, and the short answer is yes, you can get ethics involved. 

Texas Medicine: Back to the IOM report, do you see some good solutions in there or elsewhere?

Dr. Byock: There's wonderful guidance in there. You can also look for guidance in some of the statements that have been coming out of the American Board of Internal Medicine, guidelines and best practices from the American College of Surgeons, the American Thoracic Society, the National Comprehensive Cancer Network, and the American Society of Clinical Oncology in cancer care. There's general agreement where we need to go and the importance of shared decisionmaking and value-based care. The "Triple Aim" really epitomizes where we need to go and is very consistent with the IOM recommendations. What's frustrating for me is that the IOM made many of these same recommendations in their 1997 report, Approaching Death. So the government, medical education, the insurance industry, and the long-term care industry have yet to really respond substantively. And we are at a crisis point, and the window of really responding as a caring society is closing. 

Amy Lynn Sorrel can be reached by phone at (800) 880-1300, ext. 1392, or (512) 370-1392; by fax at (512) 370-1629; or by email.


Adventures in Alaskan Medicine

TexMed keynote speaker Trisha Shands, MD, practiced in the Seattle area for 10 years before mustering the courage to follow her lifelong passion to help the underserved and underprivileged full time in Alaska. In 2007, Dr. Shands, an orthopedic surgeon and Texas native, became chair of the Department of Orthopedics at the Alaskan Native Medical Center in Anchorage.  

Dr. Shands' job is to travel to 13 regional field clinics around Alaska because travel logistics for patients in remote areas of the rugged state often pose barriers to care. "The patients I take care of live in a village of 200 people. Many of them still maintain a subsistence lifestyle living off of the land. Depending on where they live, they would have to travel via river, or snow machine if it's winter. A few of them even dog sled."

The patients she sees now also differ vastly from the mostly healthy, active, young professionals she treated in Seattle. "We see a lot more trauma, just because of the nature of the lifestyle here: snow machines, four-wheelers, mixing firearms and alcohol. Bear attacks are not uncommon. It's rough living in Alaska. It's a hard place."

But Dr. Shands does not regret her decision one bit.

"When I left my practice, I wasn't worried my patients would not get good health care. But here, it's hard to attract providers. Patients aren't always covered. And that's what attracted me to it: the opportunity to take care of a population that doesn't always get good coverage," she said. "Sometimes we have a routine and a way of practicing medicine, and when you step outside of that, you realize this is a unique form of health care I don't know of anywhere else. I want to be able to share how we do that, and the challenge, and the adventure, and reward of being able to do that."

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May 13, 2016

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