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 – the Outcome-That-Must-Not-Be-Named. We treated it sterilely, 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 of 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.
Speaking of compassionate end-of-life care, I wanted to highlight the “Engage with Grace” project spearheaded by Paul Levy and Matthew Holt on their blogs (here and here), and being carried on a number of other healthcare blogs. It is a nice way to highlight some of the issues I’ve described above, and to encourage patients to talk about end-of-life care with their providers and loved ones. Please check it out.
I wish you and yours a happy and safe Thanksgiving.