STAND BY ME: PALLIATIVE CARE CONCEPTS AND APPROACHES

Why I Love Palliative Care

Joseph Sacco, MD, ABFM, ABHPM
Director, Palliative Medicine Consultation Service
Bronx Lebanon Hospital Center

When I tell people I practice palliative care, their usual reaction – after asking “What’s that?” – is, “That must be hard,” or “I could never do that.” Then they mention an uncle, an aunt or a parent who died from cancer, or a stroke, or chronic lung disease, and how hard it was for everyone, and, with a wistful shake of the head, move the conversation toward other subjects.

I nod to convey my sympathy. “Yeah,” I say, “It’s hard. It really is. But I love it. I enjoy it more than anything else I have ever done in the practice of medicine. And I’ve done just about everything. Clinic, ER, inpatient, outpatient, the ICU. Everything except operate on people. And I love it.”

This, inevitably, is met with incredulity, or at least surprise. “But don’t you deal with dying people?,” the medical and non-medical ask. “Isn’t it sad?” When I recently suggested a “road trip” to Calvary Hospital in the Bronx to visit a patient, saying how nice the place was, how they had a drink cart with wine and sherry and even let the patients’ pets visit, a surgical PA who overheard the comment wrinkled his nose like I had suggested visiting a garbage dump. “A road trip to Calvary?” he asked, rolling his eyes. “Calvary? Well, I guess if you like that kind of thing.”

The statistics are clear. Dying is managed poorly in the United States, with study after study showing doctors and other medical providers ill-prepared to handle the suffering associated with the end of life, especially pain, and referrals to palliative care and hospice programs lagging far behind need. And not only symptom management, for pain, nausea and vomiting, delirium, anxiety, and other unpleasant symptoms, but also psychosocial needs. Doctors are unaware of their patients’ preferences for cardiac resuscitation, they do not complete heath care proxies, they do not discuss ventilator dependence, long term care preferences or hospice. Patients – and families – the trajectory of illness long apparent to anyone with even a modicum of medical training and experience, find themselves suddenly confronted by a crisis that was inevitable, wholly unprepared to decide what to do. The palliative care team at my hospital finds itself in the ER, the ICU, and the wards counseling patients and families astonished to learn what they didn’t know about the ultimate outcomes of illness, aghast that they didn’t know more, and grateful, not just for the relief of pain, but at finally understanding what was going on all along.

I came to the practice of palliative care after more than 20 years of practicing hard core medicine with the sickest of the sick in the South Bronx: poor black and Hispanic people who rarely presented for care with cancer less than stage three, with HIV that had long ago morphed into frank AIDS, breathless, febrile, emaciated, drug addicted, mentally ill, miserable. In the '80s and '90s, on a single 40-bed medical ward, 70 or more patients a month died from HIV alone. And many, alone. But it wasn’t until a well-meaning oncologist suggested that a dying cancer patient’s doctors would “go down fighting,” that I moved full time to palliative care.

Now, instead of grinding out 10 or f15 patients in an afternoon in clinic or seeking to be head of the first of the hospital’s units to bring average length of stay to below three days, I pull a chair to people’s bedsides and schmooze about life, illness and death. I talk politics and morphine, “code status” and grandchildren, ventilators and movies. I give patients and families my beeper and cell phone number and tell them I am available “24-7.” They thank me profusely, visibly relieved, but they rarely call. Just having access is enough, the ability to actually reach a doctor so far off the beaten trail of conventional medicine as to elicit wonderment. And the team relieves a lot of pain. The SUPPORT study showed that pain at the end of life was unrelieved in 1995, and we find it still unrelieved in 2008. How easy is it, I ask the residents, to give someone a dollop of morphine, and how gratifying to see the grimaces melt as the pain fades? Where else in the practice of medicine can we see results more immediate and kind? Yes, we are surrounded by death. Yes, it is sad and hard. But death, I must regrettably confess, is not something that keeps us awake at night. Not after thousands. What keeps us awake at night is dying poorly managed, a death in pain, a death prolonged far beyond the limits of reason because that is the kind of death that pays hospitals the most. Abandoned elderly, collecting bedsores in nursing homes across the nation, literally a commodity, warehoused by the perverse, if well-intentioned, reimbursement structure of Medicare and Medicaid that makes them so profitable.

Now, the practice of medicine is about the medicine itself, for medicine is among the most powerful forces for good in existence, but also about the relationship, about the person and the unique preferences on which medicine will have its ultimate result. It is about the CAT scan and the subject of the CAT scan. It is about Mr. Miller, in Calvary, and his wife, Wanda, and “Al” from the corner, who I often find asleep in a chair at Mr. Miller’s bedside. I’ve known Mr. Miller since he was diagnosed with lung cancer, and I will be his doctor until he dies. It’s about Hector, post operative from colon cancer and praying that he is cured, and his daughter, who text messages me updates on his condition, as well as off-color jokes. It’s about the baby with three sets of chromosomes instead of two, whose mom will repeatedly bring him back to the hospital until he dies. I will be there every time.

When I tell people I love palliative care, this is why. Palliative care is about dying, but it is far more about relationship; being a friend of patients who also happens to be a doctor. It is about making medicine, finally, about what it should be about.