palliative care

QUALITY: "We're All Old People in Training"

Joanne Kenen — Tue, 27 May 2008 14:44:00 -0400

Thanks to improvements in public health, biomedical research, and sanitation we live longer than earlier generations. But we also die longer. And neither our medical system nor our attitudes have caught up with that reality. As one geriatrician once told me, "We still think we'll wake up dead one day."

Dr. Joanne Lynn, a geriatrician, researcher, author. and at times Really Indignant Person, has been one of the most influential voices in trying to get the U.S. health care system to adapt to the needs of patients with chronic diseases, aging, frailty, and the years of slow decline and increasing disability that often precedes death.

"We are all old people in training," she likes to say. "Where is the care system?"

We heard Dr. Lynn address a recent briefing sponsored by the Hastings Center as part of its bioethics agenda for 2008. (Dr. Lynn is now working at the Centers for Medicare and Medicaid Services, but asked that we stress that she was speaking for herself, not as a CMS employee. Although knowing Dr. Lynn somewhat, we strongly suspect that she didn't say anything in public that she's not saying even louder in private to people who really matter).

Dr. Lynn noted that our current health care model is simply outdated. It was designed a half-century ago by men in their fifties and sixties who wore suits and feared heart attacks. But the system needs a lot of rethinking to make it serve the needs of people who live for years, slowly declining, from diseases ranging from congestive heart failure to Alzheimer's. We can save a life (at least for some time) with high-tech heroics in an ICU or an ER—but then we send the patient home without taking the low-tech (or no-tech) steps to prevent a medication error. And we don't do the talking and planning that is necessary for the patient who comes back into the hospital over and over again, leaving each time a little frailer. Dr. Lynn isn't talking about withholding care from people because they are old and sick. She's talking about giving them the right kind of care. We spend lots of money doing expensive imaging studies on dying nursing home patients, who won't even live long enough to die of their cancer if they even have one. But we pay so little to people who care for the frailest and sickest; some home health aides qualify for food stamps.

She allowed herself a brief reverie. What if all the family caregivers from across the country, the ones providing hundreds of billions of dollars of free care to their loved ones, began to see themselves as a political force, got themselves organized and marched on Washington. Then she stopped herself. They can't leave the bedside of the people they are caring for, the people that depend on them to descend on Washington. Maybe, she suggested, they need a virtual march?

CMS, her own agency, has stepped up its pace of trying to address these care gaps. They recently announced a pilot program to use computerized medical records to help track and improve care coordination, particularly as a patient moves from one setting to another (transitions are notorious for outright errors or just letting things fall through the cracks). It's called CARE. Continuity. Assessment. Recording. Evaluation.

Advanced chronic disease and end of life is where we spend an awful lot of our health care dollars, particularly in Medicare. It's also where the suffering, pain, grief, sadness is. We can and must do better.

QUALITY: For a Patient in Pain, Too Much Can be Too Little

Joanne Kenen — Mon, 12 May 2008 16:57:00 -0400

Maggie Maher, a health blogger we read regularly, has a poignant post today about untreated pain, inappropriately aggressive high-tech care, and the lessons that young medical students (not to mention some older doctors) still must learn about why "good care" and "cure" are not synonymous.

Maher spent some time with Dr. Diane Meier, a geriatrician and national leader in palliative medicine at Mt. Sinai Hospital in New York, and she watched Meier share with medical students some of what she has learned about how to help seriously ill or dying patients. I learned a lot from Meier and her colleagues at the Center to Advance Palliative Care last year when I was doing an extensive reporting project on palliative care and hospice. (Click here, here, and here).

Palliative care (which unlike hospice does not preclude curative treatment and which is not only for people expected to die within a few months), is better understood and more widely available than just few years ago. But the health care system, with its emphasis on a high number of elaborate procedures, still undervalues it—even though palliative care's emphasis on getting patients the most appropriate care can often save money. As Maher writes:

Clearly, we need more palliative care specialists like Meier. But this is another case where we don’t pay enough for “thinking medicine"—which involves talking to and listening to the patient—rather than cutting him or radiating him.

“When a three-person palliative care team made up of a doctor, a nurse, and a psychologist spends 90 minutes in a meeting with a family, Medicare would probably pay $130 to $140—for all three people,” Meier told me. “And Medicare is one of the better payers.” This explains why Meier earns $100 for every several thousand dollars that her husband, an invasive cardiologist, takes home. “Though,” Meier said mildly, “it would be hard to say that one of us is practicing more sophisticated medicine."

BMJ, the medical publishing conglomerate, recently got 4,000 responses to an online poll asking people to rank six areas where doctors could make the greatest difference to patients. Number one: more palliative care.

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

Joanne Kenen — Mon, 21 Apr 2008 15:23:00 -0400

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.