QUALITY: Palliative Care for Cancer Patients -- for the Living Not Just the Dying

For much of 2007, I reported in depth on the growing field of palliative medicine (which isn't the same as hospice -- for starters, it isn't restricted to patients with a six month prognosis). One of the areas that caught my interest was the idea of providing palliative care to cancer patients. Many of these patients may live for months, years, or even decades after their initial diagnosis but at times they still need pain and symptom control, family and psycho-spiritual support, guidance in the technically daunting and emotionally wrenching decision-making they face. Other patients will die. Palliative care can help them make a more timely transition to hospice (which usually takes place at home) or can ease their suffering if they die in the hospital (if they are in one of the expanding number of hospitals that have palliative care specialists).

I wrote about palliative care and the cancer patient in the spring 2008 edition of CURE (a magazine that is not necessarily well-known among the general public but is widely read by patients, survivors and the people who treat them). Overall, from everything I saw and read during my months of reporting on palliative care and hospice as a Kaiser Media Fellow I was impressed by the mounting evidence that palliative care is not just a humane practice that we need more of, it's also a money saver—or at the very least, a way we can get better quality for the same money. Palliative care doctors, nurses and social workers alleviate symptoms, coordinate care and get people to the most appropriate settings. (The decision-making component isn't about rationing care. It's about helping people better understand their options.) The Center to Advance Palliative Care monitors the growing body of research on how it makes economic sense.

But the cost picture on cancer and palliative care was murkier, particularly in the outpatient setting that I was writing about for CURE. Little research has been done, it's new, and it's hard to design appropriate randomly controlled trials. Some really good, dedicated doctors I met told me that their palliative care programs were underwritten by philanthropy. Our physician-payment system is tilted toward specialists who perform lots of procedures, and it doesn't pay well for the hours palliative care specialists spend coordinating care, and talking to patients and families. Charity fills that payment gap.

But other doctors doing palliative care in the outpatient cancer setting thought they were in fact saving money, albeit in ways that are very hard to measure. For instance, the books of the freestanding outpatient cancer center of excellence may show palliative care as an expenditure. But as one palliative care specialist at a nationally-known cancer center told me, the oncologists were bringing in even more money because he, the palliative expert, was taking on a time-consuming less renumerative aspect of cancer care. Every hour he spent talking to a patient or treating their pain freed up an hour of the oncologists' time to do more chemo, which does make money. And as Nessa Coyle at Memorial Sloan-Kettering told me, the palliative care team, which can involve doctors, nurses, social workers, chaplains, physical therapists, and nutritionists, is often called on to intervene in a crisis. But often, she said, palliative care can avert a crisis and let the patient avoid hospitalization and frantic trips to the emergency room for pain or other symptom crises. If a patient stays out of the hospital, particularly out of the E.R., it saves our overall healthcare system money, although the costs that were avoided may not show up on the books of the cancer center. (Even if the cancer center is part of the hospital, it's easier for an institution to measure revenue from, say, an oncologist than cost avoidance from an ER visit that didn't happen anyway).

Whether it's part of a comprehensive reform to our overall health care system (as we hope) or a modernization of Medicare for the Boomers in the next few years, policymakers need to better understand palliative care. First of all, it's clearly a quality issue; we should expect no less of our health care system than to alleviate suffering. But done right, it is also an economic imperative. Palliative care should be seen as a form of primary care—doctors who treat the whole patient, who coordinate care among specialists, who try to treat problems before they become acute crises. End of life care is always going to cost money; that's when people are sickest. Palliative care can help us spend smarter, and more far compassionately. Every time I saw a palliative care doctor at work during my reporting project last year—from the very first day, when Dr. Ira Byock at Dartmouth Hitchcock Medical Center took me into an ICU where a 25 year old would later that day die of cystic fibrosis with her family at her side—I silently wished that the people I love will have this kind of care when they need it.