'We're not talking about dying': The human touch of palliative care
A UPMC doctor has been a driving force in 'promoting quality of life for people with serious illness.' The logical and low-tech medical treatment is valued by hospitals and patients alike.
December 21, 2014 12:00 AM
Dr. Robert Arnold, palliative care specialist at UPMC, consults with Dr. Jordan Keen, a palliative care fellow, while treating patient Jim Salathe III, who has Duchenne muscular dystrophy.
Dr. Robert Arnold, left, palliative care specialist at UPMC, consults with Dr. Jordan Keen, a palliative care fellow.
By Gary Rotstein / Pittsburgh Post-Gazette
A rail-thin doctor with bushy hair and beard and bright, striped socks beneath a loose-fitting dark suit walks into a room of UPMC Presbyterian to meet 79-year-old cardiology patient Marilyn Tsapis.
The Ithaca, N.Y., resident, who had heart bypass surgery eight days earlier, is unhappy with her slow recovery on the fifth floor. The doctor wants to hear about it. He doesn’t examine her. He’s just eager to listen.
With her two daughters in the room, Ms. Tsapis lets fly a chattily cantankerous tale of woes about her setbacks. She’s been in pain. She’s had trouble with her breathing. She’s still weak.
After patiently listening, the doctor asks questions about her background, her family, her interests, her pleasures in life. With droll references to the hospital, the medical profession, her hometown and her daughters, he gets her to laugh.
He then issues his professional opinion: She has leeway to whine to her daughters two hours a day without them rebuking her, but otherwise she should be taking walks in the hospital, playing games that she enjoys and avoid sitting around preoccupied by her health troubles. This is how she can assist her own recovery.
This unusually inquisitive doc gives her that prescription as a palliative care specialist.
“I didn’t know what palliative care was,” Ms. Tsapis says, a little taken aback by both his patience with her gripes and his part-playful, part-serious recommendations. “I associate it with that other word — hospice.”
“Hospice? I’m way better than that,” says Dr. Robert Arnold, 57, recognized as Pittsburgh’s leading practitioner and promoter of palliative care. “We’re not talking about dying — you’d better not. … It’s promoting quality of life for people with serious illness.”
That sounds fine to Ms. Tsapis, one of 16 patients Dr. Arnold will see that day at Presbyterian and Montefiore hospitals.
For some, he will recommend new pain medicine, coordinate plans for their care after hospital discharge and encourage their consideration of end-of-life decisions. For others, he orders up doughnuts, a birthday gift card and a cooler room.
It’s the kind of non-surgical, low-tech medical treatment that hospitals increasingly believe is saving themselves and America’s health system money, while giving patients more of what they want.
At the same time, this newest of medical specialties called palliative care is vastly misunderstood and under-utilized by both the American public and medical professionals, concluded an in-depth report released in September by the U.S. Institute of Medicine. The “Dying in America” report considered that lack of knowledge particularly harmful to those with serious illnesses late in life.
“A number of specialty professional associations encourage clinicians to counsel patients about palliative care, but too few patients and families receive this help in a timely manner,” it said, calling that shortcoming “one of the greatest remaining challenges in the delivery of high-quality end-of-life care.”
Palliative care is related to hospice care, and both have grown dramatically in the U.S. over the past two decades, but they are not the same. Hospice is designed to enhance the comfort of terminally ill people who might have only six months or less left to live and who no longer seek curative treatment. Hospice care is most often delivered by professionals visiting people in their own homes.
Palliative care, most commonly delivered in hospitals, promotes comfort and communication for seriously ill patients. Multiple studies have found that even though it adds to the number of staff and the time involved with patients, it reduces health care costs while increasing patient satisfaction. An often-cited 2010 study of lung cancer patients also suggested it extended their lives compared to those who received no palliative care.
Only recognized as a certified specialty for doctors in 2006, palliative care was not widely practiced in U.S. hospitals until this century. Large institutions attached to academic centers, as with UPMC, were the trendsetters. Since 2000, the number of hospitals offering it has more than tripled, so that most hospitals now have programs with interdisciplinary teams.
The hospitals of the Allegheny Health Network began a palliative care program four years ago. The program director, Dr. Randy Hebert, said he learned much of what he knows from working under Dr. Arnold at UPMC from 2002 to 2008.
“Pittsburgh is ahead of the curve in this field,” Dr. Hebert said, “and I’m giving all the credit to Bob and UPMC.”
‘Like a translator to everyone else’
Dr. Arnold was trained as an internist but arrived at the University of Pittsburgh School of Medicine on a fellowship in 1988 to teach ethics to medical students. No one then was talking about palliative care locally, but seeds were sprouting nationally. For him, it became a natural spinoff of his interest in enhanced patient communication and his clinical work with dying patients at the Pitt-based Pittsburgh AIDS Center for Treatment.
He was instrumental in UPMC starting the region’s first palliative care program — initially just a couple of doctors attached to the Pittsburgh Cancer Institute in the early 1990s. It has grown to consist of about 100 doctors, physician assistants, nurse practitioners and social workers throughout the UPMC Health System working under Dr. Arnold’s guidance as medical director of its Palliative and Supportive Institute.
No one comes to a hospital specifically to see a palliative care doctor — they are consultants called in for assistance by cardiologists, oncologists, trauma surgeons and others. The palliative care team assessed 7,472 new patients at 10 UPMC hospitals in the fiscal year that ended June 30.
That’s a small fraction of the 170,000 patients who were admitted to those hospitals, because people receiving routine hospital treatment and expecting full recoveries aren’t candidates for the palliative team. It is generally those with advanced illnesses and late-life, chronic conditions whose pain or other symptoms are troublesome in the hospital and would limit the quality of their lives after leaving it.
Their treatment is supplemented by professionals who devote time with both them and their families in discussing the nature of their illness, their options for addressing it, how they can be more comfortable in and out of the hospital and — if the patient and family appear open to it — decisions related to end-of-life care.
A lot of the work is simply taking time to communicate with patients and families in a hectic setting.
Dr. Robert Arnold, palliative care specialist at UMPC, talks with patient Jim Salathe III, who has Duchenne muscular dystrophy, on Oct. 2. (Steve Mellon/Post-Gazette)
“I’m like a translator to everyone else,” Dr. Arnold says on one of his many trips up and down hospital stairwells, shunning the elevators that would only slow him down. “A lot of what I do is fill in cracks, with what I can add that the primary docs don’t think of.”
On a recent morning before starting his day of rounds at Presbyterian and Montefiore, he met at 9 a.m. with the rest of the palliative care staff working there that day — two other doctors, a psychologist, nurse practitioner, physician assistant and three social workers — to review the cases of 28 patients for whom the team’s consulting was sought.
Some have cancer, some had transplants, some were facing discharge to hospice care and others posed a disease-related complication or challenge.
Dr. Arnold spends the next nine hours climbing the stairways and walking the halls of the two hospitals, carrying a stack of patient files in one hand. In the other is a large bottle of Diet Coke he sips throughout the day, which he carries dangling from the plastic rings of the six-pack it came with.
He’ll walk about 15,000 steps by day’s end (he wears a digital counter), with his patient visits punctuated by stops at communal hospital computers to input data about each visit. With a new patient, he might spend more than an hour inquiring, listening, explaining and trying to understand his or her situation while talking in-depth with both the patient and relatives. On this day, nearly all of the patients have already been seen previously by him or another palliative team member, and their situations need to be updated.
His first visit is to a cancer patient who had been delirious the day before but is better. Plans have to be made for his discharge. Dr. Arnold calls the social worker handling his case to discuss a transfer to a residential hospice, then calls the patient’s sister to explain the situation.
“I try to make sure everyone’s on the same page about where he’s going to go and what the plan is,” he says afterward. What would happen if he weren’t involved? “It would get done — it would just take longer, and the sister would get mad because she’d think no one is communicating with her.”
At times he seems as much an advocate for patients as he does a physician. He’ll sit on their bed while chatting. He may rest his hand on theirs, or perhaps lightly massage a neck or back. Kneeling to get on their eye level or propping an elbow next to them on the bed, he’ll lightly joke about anything — the number of doctors they see, their bowel problems, the hospital food.
One woman mentions she threw up her lunch the day before. He grimaces.
“Ew, it doesn’t taste that good here going down — it can’t be that good coming up.”
Another patient is a woman with dementia and diabetes who’s on his consult list because her physicians are concerned she’s not eating. Since she’s also obese, they can’t figure out why not. He asks her about it. She says she doesn’t like the food.
Dr. Arnold finds her attending physician, a large young man originally from another country, in a nearby corridor. “The food you’re giving her sucks,” Dr. Arnold says flatly. “She says she really likes doughnuts, so let’s give her doughnuts.”
The doctor, straight-faced, nods while murmuring, “Doughnuts,” presumably unable to place it in context with any of his medical school training.
When another patient complains about the nasty aftertaste of her liquid pain medication, Dr. Arnold sends her nurse scurrying to find a chocolate bar that will get rid of the taste.
Normally, Dr. Arnold doesn’t give his own orders but advises other doctors who are in charge of the patients’ treatment. That changes when he sees Robert Campbell, a 76-year-old patient in the intensive care unit who is diagnosed with multiple organ failure and is gulping rapid breaths, clearly uncomfortable while only semi-conscious.
Because of his terminal condition, Mr. Campbell has been listed as CMO — comfort measures only. Dr. Arnold quickly finds a nurse and instructs her to administer Dilaudid, a pain reliever that should help regulate his breathing, every 15 minutes until he’s at ease.
“When the focus is only on comfort, and I see someone uncomfortable, I’m going to jump in and break protocol,” he explains after leaving the nurse.
His goals can be frustrated by other professionals hesitant to call for his assistance, worried that it implies something unsatisfactory about their own treatment or that a patient can’t be cured. Some fear the palliative care team will raise questions with patients about end-of-life care too early, and so ask Dr. Arnold and his colleagues to postpone the subject.
He defers in such cases, Dr. Arnold says, because as a consultant, “If I’m not respectful to them, I get called less.”
Support from the top of UPMC
On this day of rounds, Dr. Arnold is quietly irritated that a patient with multiple problems in his 80s, whose prognosis for improvement is poor, was placed on a feeding tube the day before by his physicians, even though it means he’s more uncomfortable. Dr. Arnold wasn’t invited by the doctors to discuss it with the family, as he prefers.
“When I was younger, I would get upset. But it’s a big hospital. Everybody’s doing the best they can,” he says before calling the patient’s family and providing his cellphone number in case they have any questions about care.
Dr. Arnold talks a lot about “culture change” being a challenge at a place as big as UPMC, with so many doctors who attended medical school before palliative care was ever discussed. It helps that those in charge of the hospitals are on his side.
Palliative care specialist Dr. Robert Arnold comforts patient Robert Campbell, 76, while talking with Campbell's son, Eli Campbell. (Steve Mellon/Post-Gazette)
Because the touchy-feely services of palliative care doctors are not reimbursed by Medicare and private insurers to the extent of physicians performing procedures (a typical reimbursement for a palliative care specialist doing a 90-minute initial assessment is about $87), the Palliative and Supportive Institute has to be subsidized by an allocation from UPMC’s general budget. Only about half of the institute’s $4.5 million in annual costs is covered by billings.
“There’s a revolution going on in health care,” said Dr. Steve Shapiro, UPMC’s chief medical officer. “We know we’ve got to lower our costs and we’ve got to improve our outcomes, mostly in patient experience, and I can’t think of anything that does that more simply than palliative care.”
Although high-tech, life-saving procedures are what are often marketed as a strength by an institution as large as UPMC, hospitals no longer automatically profit by maximizing use of the most sophisticated treatments. Increasingly, reimbursements are set at a certain bundled amount per patient admission, based on diagnosis, and a hospital benefits financially from patients who opt for less intensive treatment. Palliative care research has also shown it reduces repeated emergency room visits by patients.
Dr. Shapiro said many patients with advanced illnesses eventually prefer being comfortable to pursuing the most high-tech procedures, and palliative care doctors trained in communicating about difficult decisions can help them understand their options better than specialists focused on curing them.
“We’re experts at providing life-saving emergency surgery and good at technical aspects when people are bleeding,” said Dr. Louis Alarcon, medical director of trauma surgery, “but maybe less at providing social and psychological support, and have less time to manage these other aspects.”
Being straightforward with patients about prospects of dying is difficult for many physicians...
Being straightforward with patients about prospects of dying is difficult for many physicians, said Dr. Greg Bump, an internist who finds the palliative care team helpful when trying to assess and explain to terminally ill patients their realistic remaining time span. Such predictions are difficult even for the palliative specialists, however.
“Babies are not born when doctors say, and we’re not really any better at end of life,” Dr. Arnold tells one family in a meeting to discuss their dying patriarch. “My guess is we’re talking days, not weeks.”
Nancy Zionts is chairwoman of the regional Coalition for Quality at End of Life, an advocacy group that Dr. Arnold helped create. She said Pittsburgh is fortunate to have a group of major institutions — Highmark as well as UPMC and Allegheny Health Network — that collaborate in supporting palliative care despite their other competition. The shortfall today, she said, is in lack of knowledge and use of the specialty in smaller facilities and community health settings.
“It should be a primary care focus, not just something you have in the ICU or hospital or nursing home,” said Ms. Zionts, who works as chief program officer for the Jewish Healthcare Foundation. “It has so much value earlier in the continuum when people are trying to manage chronic conditions.”
Dr. Porter Storey, executive vice president of the American Academy of Hospice and Palliative Medicine, said the fee-for-service reimbursement model that remains moreso in community health settings than hospitals has been one hindrance to greater spread of palliative services.
“It also has to do with workforce issues,” he said. “It’s very labor-intensive to send palliative care teams to people’s homes and to staff clinics. It takes a lot of people, and we’re not training enough palliative care physicians.”
Dr. Arnold said strides are being made, as development of communication skills with patients is ingrained in the medical school curriculum now in a way it wasn’t decades ago. Young cardiologists, oncologists and other specialists working at UPMC on fellowships are taken out of the hospital for days of training in palliative methods under his tutelage.
There will always be some patients who want every last medical measure to prolong their lives, Dr. Arnold acknowledges — “Ten percent of the public are vitalists who believe that any life at all is worth it.” Rather than try to talk those individuals out of it, he tries to focus on increasing the comfort of others who are realistic about what their bodies tell them in decline.
“It’s never going to be easy, but it can be easier, if we give patients and families more guidance,” he says.
Gary Rotstein: firstname.lastname@example.org or 412-263-1255.
To report inappropriate comments, abuse and/or repeat offenders, please send an email to
email@example.com and include a link to the article and a copy of the comment. Your report will be reviewed in a timely manner.