I’m on clinical service now and my patients are dying left and right. And I’ve never been prouder of my own care, and that delivered by my colleagues and hospital.
When I was in training, a patient’s death was invariably considered a medical failure, and thus an occasion for shame and silence or “the outcome that must not be named.”
We treated it coldly. We might dissect a death case in an M&M conference (“Why didn’t you start heparin at this point?”), but I can’t remember ever seeing an attending role model an end-of-life discussion with a patient or family, talk about palliative care on rounds, or work with a multidisciplinary team to ensure that a patient’s last days or weeks were pain free and dignified. The dying patient was the Elephant In Our Room, but we stayed huddled in the other corner, where medicine was clinical, safe, and emotionless.
A profound change in this sad state of affairs has been gaining momentum over a generation. The hospice movement began in England in the 1960s under the tutelage of Dame Cicely Saunders, and ultimately was embraced in the US, spurred on by Kubler-Ross’s landmark book, On Death and Dying. The first mention of palliative care in the English language medical literature came in 1956, with hospice first described 7 years later. But these movements remained far outside the American mainstream well into the 1980s.
In the hospital, recognition of the absurdity of the Full Court Press in patients with poor prognoses led to a major focus on Do Not Resuscitate orders in the 1980s. This was my first research interest – as a UCSF resident in the mid-80s, I cared for scores of AIDS patients with pneumocystis pneumonia who died terrible deaths in the ICU. Working with my wonderful faculty mentors Bernie Lo, Phil Hopewell, and John Luce, I began investigating their mortality rates and how we could make better and more informed decisions regarding CPR and mechanical ventilation [for example, see here and here].
But in the hospital world, these twin trends – hospice on the one hand, and decision-making regarding CPR and mechanical ventilation on the other – remained strangely dissociated. The movement promoting compassionate care for dying patients was largely community-based and tended to focus on patients dying slow and painful deaths – mostly those with terminal cancer. Meanwhile, in the hospital we were exploring the senselessness of “doing everything” for (or, more to the point, to) patients with poor prognoses, troubled by seeing lives end so violently, stripped of all dignity. But we spent virtually no time thinking about how to bring hospice-like sensibilities and resources into the hospital. Frankly, as I think back, many of us saw that work as being a bit too touchy-feely for our tastes. We were doctors, after all, not social workers.
This was a profound failure of both imagination and conscience, and it led to the emergence of a thriving underground economy in death. In a 1998 study, Tom Prendergast and John Luce demonstrated that most of the patients who died in American ICUs had some portion of their care withdrawn or withheld. This was a shocking finding, particularly since few caregivers talked about this common practice openly, fearful of being sucked into the public broo-ha-ha surrounding euthanasia and Right to Life. But the silence came with a terrible price: Nobody was ever taught how to do this well, and the medical literature simply airbrushed out the practice.
But the larger tragedy of our failure to embrace palliative care as a legitimate discipline was that by continuing to view death as a failure, we failed to gain the expertise and garner the resources to promote affirmative conversations with patients about alternatives to aggressive care. Sure, we might close the curtains, bump the morphine, and allow the patient whose care was near hopeless to pass peacefully, but we virtually never spoke openly with patients or families about how a focus on comfort might be a better way to complete one’s life.
This has been the magic of the palliative care movement. By naming and legitimizing the field, defining its competencies, promoting research, and training experts, we have made clear that this part of medicine is a crucial part of being a great doctor. (I can’t go on without paying tribute to several foundations, particularly Robert Wood Johnson under the leadership of my colleague Steve Schroeder, and Soros, for seeing this need and supporting it with real money).
The results have been spectacular. Today, when a patient is admitted to UCSF Medical Center with a potentially terminal illness, we spend less time on a narrow and largely irrelevant discussion about “would you want us to shock you if your heart stops” than on a much broader dialogue about two different philosophies of care: doing everything to keep you alive longer, with all of its attendant burdens (not to mention costs, but that’ll be a subject for another day), versus focusing on keeping you, and your loved ones, as comfortable as possible during your final days. We have that discussion now because a) we’re all much more at ease with the concept; b) we are now relatively well schooled in how to conduct these conversations; and c) we can bring to bear resources and experts to help us out – both in having these discussions and in implementing the plan when patients and families choose comfort over cure.
Which brings me to our Palliative Care Service (PCS), which I’m proud to have live within my Division of Hospital Medicine at UCSF. (Parenthetically, since most American patients die in hospitals – Oregon is the only state in which they don’t – the marriage of the fields of hospital medicine and palliative care is one literally made in heaven; that so many hospitalists are interested in palliative care, and visa versa, is a source of great strength for both fields.) Launched a decade ago by “the Two Steves” – Pantilat and McPhee – our Palliative Care Service has utterly transformed the way we practice medicine. In fact, I could no more imagine how a modern hospital could function without a robust palliative care service than I could without a strong cardiology service.
Whenever I call the PCS to help care for one of my patients – as I’ve done several times this month – I am always awed by my colleagues’ skill and compassion, and the practical help they, the PCS-trained nurses, and PCS social worker Jane Hawgood, bring to bear at times of great need. And every time they are involved in a case, my medical students and residents, and the ones rotating on the PCS (which – as one small measure of the transformation – has become one of the most popular electives at UCSF) broaden their definition as to what it means to be a great doctor.
Back to my team this month – in the past two weeks, we’ve had 5 patients die out of about 25 admissions, a 20% mortality rate. And I couldn’t be prouder of the way we managed the patients’ care, our communication with the patients and their families, and the tears that we’ve all shed along the way. At one point or another in virtually every case, family members hugged me, members of my team, or members of the PCS and thanked us for our wonderful care – this at the most horrible time in their lives. It is uniquely sobering and gratifying.
We are entering a world in which case-mix adjusted mortality rates will be reported on the Web – and what other “quality” data could possibly resonate more deeply with the public? But I always recall the amusing story that arose from New York’s early experience with mortality reporting. About 15 years ago, goes the tale (probably part apocryphal), the state began publishing hospital mortality rates, and one local newspaper decided to republish the results. Of course, someone must be the worst – in this case, it was an upstate institution with a mortality rate near 75%! The paparazzi flocked like locusts to this small institution and set up their sea of boom microphones and klieg lights on its front lawn. Shoulders slumped, the hapless director trudged out to the mikes to answer questions about these shocking data. “We’re a hospice,” he said simply.
Sure, in some cases a high mortality rate will be a marker of poor doctoring or dysfunctional systems. But sometimes it will demonstrate that a caregiver sat down with a patient and her family, honestly discussed the alternative ways of providing care, listened carefully to both facts and emotions, offered resources to orchestrate a “good death,” and shed a tear with the family when the terrible time came. We’d better be awfully careful about creating a set of incentives that stands in the way of that kind of medicine.
So on this Day of Thanksgiving, this is what I’m giving thanks for – to be practicing in an institution, in a specialty, and in an era in which this kind of care is recognized and celebrated for what it is: medicine at its finest.
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Bob:
Thank you so much for your insightful entry about palliative care. As someone who went to medical school to work in hospice, I have witnessed tremendous changes in the medical profession in a relatively short time. In the ten years that I have worked as a hospice medical director and palliative care consultant, we have moved from a time when teaching teams of docs on rounds routinely walked by the rooms of dying patients, telling doctors-in-training “oh, that one is not interesting. It’s just another dying patient.” Rather than seeing death and dying as out of the province of our care, now rarely a week goes by where there is not a paper about the topic in a major medical journal. Sadly, we still have a long way to go with only ~1/3 of all hospitals in the US offering palliative care consults and this is largely at teaching centers. The efforts you describe at UCSF and other teaching hospitals across the country provide leadership examples that all hospitals can learn from.
I enjoyed this essay tremendously. I remember starting a service at a large county hospital and all the housestaff would joke about the “death” service. When we would arrive to the bedside the team would look puzzled as to why we would be seeing a patient with highly advanced cancer. Typically the Emergency Department would initiate all consults after seeing the same pattern over and over. Patients without a concept of goals of care and no discussion of advance directives.
Over two years the culture is transformed and we can barely accomodate all the consults from the folks “upstairs” in the ICU’s and wards. Looking back I think that just remaining optimistic for culture change was key but it was a rocky road.
Thank you for your outstanding insight.
I wanted to echo Diane Meier’s comments and thank Dr. Wachter for his moving essay. I started my career as an academic oncologist, but quickly realized the short-comings of modern medicine in providing the breadth of care that patients and families truly need. Attending an early meeting of the Academy of Hospice Physicians, now the American Academy of Hospice and Palliative Medicine, I found my “tribe” and dedicated my career to integrating palliative medicine into the fabric of American medicine. The advances of the past 10 years have been nothing short of breath-taking, or as Dr. Meier likes to say, we appear to be past the tipping poing of social change. However, there is still much to do, and in the current national fiscal crisis, the continued growth and sustainability of hospital palliative care is far from assured. I urge those of you seeking career and/or clinical information to contact the American Academy of Hospice and Palliative Medicine (physicians) and for nurses, the Hospice and Palliative Nursing Association. For assistance with the operational aspects of starting and sutaining a hospital palliative care program, of the type Dr. Wachter so eloquently described, visit http://www.capc.org, for a wealth of practical tools and information.
Hi Bob- what a wonderful description of the incredible privilege of taking care of patients at such a meaningful and profound point in their lives, and for your embrace of the importance of having the core palliative care skills necessary to do right by them. I find that people practicing palliative medicine are almost all unusually fulfilled and happy in their clinical work (this is certainly true for me) and it is for all the reasons you articulate so eloquently in your post.
The growth of hospital palliative care teams in the U.S. has been nothing short of spectacular- more than 75% of hospitals with more than 250 beds now report a program. As a result, doctors and nurses have increasing access to expertise when their patients need help with difficult symptoms or families need help understanding the choices they must make or when the ability to safely discharge a medically complex and chronically ill patient seems out of reach. And of course, to ensure meticulous and highest quality care at the all-important time of death. How the dying and the death occur, and how we stand by our patients and their families when it does is remembered forever by our patient’s families and can either help them heal from the loss (if done well) or greatly complicate their grief and bereavement process (if done badly).
The literature is clear on the quality impact of palliative care, and just like hospital medicine, palliative care not only improves healthcare quality, but is far more efficient in terms of hospital resource use than business as usual (for the latest research on this topic look here http://archinte.ama-assn.org/cgi/content/full/168/16/1783) because it helps assure the right care for the right patient at the right time.
If people are interested in learning more about what palliative care is, see http://www.getpalliativecare.org for a website aimed at consumers- this site also has a palliative care program directory so you can find a program in your town and see whether your local hospital has this resource.
If you are a health professional and interested in getting technical assistance on the development of high quality and sustainable hospital palliative care programs, please see http://www.capc.org. This is the website of the Center to Advance Palliative Care, an organization solely devoted to helping hospitals and professionals to develop palliative care services.
Barry writes:
> If we are ever going to make progress at bending
> the healthcare cost growth curve lower, less
> expensive and more sensible end of life care needs
> to be a big part of the equation
I’m reading a book right now (down to the last chapter) Redesigning the Medicare Contract by Edward Lawlor, how the dean of the George Warren Brown School of Social Work at Washington University in St. Louis [whew!]. Full disclosure: I want to go work for the guy in his new public health institute.
I plan to write a full blown review, but here’s something apropos this discussion. I’ll simply quote, beginning with the last paragraph on page 151, and provide Lawlor’s reference.
[begin quotation]
Ezekiel and Linda Emanuel stimulated an interesting discussion of the economics of dying in a study published in the New England Journal of Medicine. In a heuristic designed to illustrate the limits of savings on the care of terminally ill patients, the Emanuels conclude that “best case” savings through hospice, advance directives, and reductions in so-called futile care would reduce national healthcare spending by close to $30 billion, 3.3 percent of all healthcare spending. […]
[end quotation]
Ezekiel and Linda Emanuel, “The Economics of Dying: The Illusion of Cost Savings at the End of Life”, New England Journal of Medicine 330, no 8 (February 24, 1994): 540-44
Hospice care is not free, and in order for the patient and his family to derive the benefit of hospice care, it must begin some time (canonically six months) before the patient’s death is anticipated. So whilst the intensity of medical intervention under hospice care is lower, it goes on for quite awhile. There is also the problem of predicting a date of death.
Now, 3% of $2T is nothing to sneeze at, for sure. But rationalizing end of life care is a small, not big, part of the equation.
This absolutely is not an argument against palliative care as described by Dr. Watcher. But the focus should be on what’s best for the patient, not on saving money. If we manage actually to save anything, this is a happy side-effect of reduced intensity.
t
Excellent post. I echo the above comments.
It’s posts like this that make THCB a ‘must visit’ place.
Hello Bob,
Thank you for your heartfelt comments. The issue of death is far from being addressed in modern medicine procedures. In my recent book, “Body Harmonic: The Conscious Anatomy” I discuss some of the relevant issues here, including ethical issues relating to determining when a patient should be left to nature’s course, the right of a patient to pre-determine particular life support measures, and the role of doctors in recognizing the difference between the living spirit of the patient and the physically incapacitated body. I would be happy to send you a copy of the book for your review. My email address is: cadams@realnaturalhealth.com.
Blessings,
C.Adams
Hi Bob: I work with healthcare providers regarding finding better ways to perform the administrative and organizational aspects of their work. I’ve always focused on the rationale we need to do this so we can spend more time on the important patient parts of our work. This story of yours reinstills excitement in me and affirms my orientation to work
Thank you so much!
Hi there Bob, I Completely agree with Barry that this post is one of the best posts published online on any blog or web. I would definitely bookmark you.
Dr. Wachter,
This is one of the most encouraging healthcare posts I’ve read in a long time. I would be interested in your opinion as to just how widespread good palliative care programs are among both academic medical centers and community hospitals. For those hospitals that don’t have a program yet, what has to happen to create one? Is there a catalyst? Where does the leadership need to come from – attending doctors, executive management, both? Is there a significant adverse revenue impact as hospitals, presumably, get paid less for doing less? If so, how do they cope with it? If we are ever going to make progress at bending the healthcare cost growth curve lower, less expensive and more sensible end of life care needs to be a big part of the equation, in my opinion.
Dr. Wachter,
This is one of the most encouraging healthcare posts I’ve read in a long time. I would be interested in your opinion as to just how widespread good palliative care programs are among both academic medical centers and community hospitals. For those hospitals that don’t have a program yet, what has to happen to create one? Is there a catalyst? Where does the leadership need to come from – attending doctors, executive management, both? Is there a significant adverse revenue impact as hospitals, presumably, get paid less for doing less? If so, how do they cope with it? If we are ever going to make progress at bending the healthcare cost growth curve lower, less expensive and more sensible end of life care needs to be a big part of the equation, in my opinion.