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Profiles in palliative care

December 2004

Published in the December 2004 issue of Today’s Hospitalist

The 24-year-old woman had been diagnosed with acute leukemia and was receiving inpatient chemotherapy. While treatment seemed to be on track, she was constantly agitated and begged for more pain killers every few hours. Worried that the woman was exhibiting the classic signs of a drug-seeking patient, the attending called for a palliative care consult.

Palliative care specialists quickly agreed that the patient was agitated, but not because she was a drug-seeking individual. Housestaff had miscalculated the half-life of the opioids she was taking, so the drugs they had ordered every six hours began to wear off after about three hours. That was just about the time that the young woman would begin to hit the call button.

“We were called in to try to reduce the strain on the housestaff and the nurses and attendings because this patient was seen as so demanding,” recalls Diane E. Meier, MD, director of the palliative care program at Mount Sinai School of Medicine in New York. “All we did was change the frequency of administration of the medicine from every six hours to every three hours, and her pain was well-controlled.”

While the story is a classic example of how many physicians are less than expert at easing patients’ suffering, it also shows how an inpatient palliative care unit can go a long way towards helping not only patients, but the physicians and nurses who treat them.

Dr. Meier, an authority in the palliative medicine community, explains that the incident occurred in the early years of the palliative care service at Mt. Sinai, and that it would simply not occur today. For one, housestaff are much better versed at prescribing opioids. Perhaps even more importantly, many of the physicians at the legendary teaching hospital know to call the palliative care program before their patients ever reach the point of crisis.

But inpatient palliative care program, do much more than simply address symptoms like pain. After adjusting the young woman’s pain medicine, for example, the Mount Sinai team visited her up to three times a day during the nine months she was in the hospital. And while the patient eventually succumbed to her illness and died in the hospital, she experienced what palliative care experts like to refer to as a “good death.”

Inpatient palliative care services aren’t exactly new, but they have entered a period of rapid growth in recent years. And while experts say the trend will ultimately improve both patient care and the financial picture for many hospitals, the growth of inpatient palliative care services promises to affect hospitalists.

As caregivers for the sickest of the sick, after all, hospitalists are likely to see many of the patients who are candidates for palliative care as they rotate in and out of the hospital. And like their colleagues in palliative care services, hospitalists are in a unique position to not only make these patients’ experience with serious illness more tolerable, but to make sure that they receive the most appropriate and cost-effective services.

Beyond cancer

No so long ago, hospice and palliative care were almost the exclusive province of oncology. In the last few years, however, that has begun to change.

For several years, Medicare’s hospice program has experienced significant growth in the number of patients with a disease other than cancer. Last year was the first time, in fact, that less than half of the Medicare patients in hospice were suffering from cancer.

This shift in hospice demographics reflects not only the country’s gradual embrace of end-of-life care, but the evolving mission of hospices and palliative care services. Hospice officials talk about moving “upstream” to reach patients with terminal “or eventually terminal “diseases well before they’re at death’s door. Patients with congestive heart failure, they say, can benefit from a palliative care consult long before they reach their last weeks “or even months “of life.

“More and more people are recognizing that those last months and maybe years of life are challenging,” says Joanne Lynn, MD, director of the Washington Home Center for Palliative Care Studies and senior researcher at the Rand Corp. “Patients need good medical care, but they also need a tremendous dose of thoughtful judgment. You know you’re up against mortality, and you don’t want to put patients through a lot of treatments that use up what little time they have left.”

At Boston’s Massachusetts General Hospital, home to one of the country’s older inpatient palliative care services, cancer patients still account for about 60 percent of referrals. The service, however, increasingly cares for patients with conditions ranging from trauma and sepsis to heart failure, lung disease, neurological injuries, stroke, and other diseases that will likely end patients’ lives.

“Hospice is an obvious answer for many dying people and their families,” explains J. Andrew Billings, MD, director of the hospital’s palliative care service, “but for those patients who don’t want or aren’t eligible for hospice, it’s very hard to get good care. We provide that kind of care.”

While inpatient palliative care services vary from hospital to hospital, most say they spend about half of their time treating symptoms that include pain, dyspnea, delirium, nausea and vomiting. But because half or more of the patients seen by these services die while still in the hospital, there is also a high priority placed on guiding patients and their families through other aspects of the disease process.

“Everyone gets attention to their coping and psychosocial adaptation,” says Dr. Billings, who is also co-director of the Harvard Medical School’s Center for Palliative Care, which provides education and training in palliative care. “If there are kids in the family, they would be offered some special counseling. There is a lot of discussion with patients about where they want to be when they’re sick and how to best care for them, the setting they prefer and the kinds of support they need.”

Rapid growth

The success of programs like those at Massachusetts General and Mount Sinai are helping drum up interest in hospitals across the country. Dr. Billings cites recent data that between 20 percent and 25 percent of hospitals already have some sort of inpatient palliative care service, and that another 10 percent or so are planning a program. While he suspects that some of these programs may consist of little more than a nurse or chaplain, Dr. Billings says they nonetheless represent progress.

The growth of inpatient palliative care mirrors an even bigger boom in hospice care. The nation’s hospices treat a patient population that grows by 50,000 to 75,000 individuals a year, according to Donald Schumacher, PsyD, president and CEO of the National Hospice and Palliative Care Organization. In 1982, when Medicare first established a hospice benefit, a mere 40,000 patients received care from a hospice. This year, nearly 1 million patients are expected to take advantage of hospice benefits.

Nowhere is the growth in hospice and palliative care as rapid as at the Veterans Health Administration, where officials are bracing for a surge in the number of veterans reaching the last phase of their lives.

Scott T. Shreve, DO, the VA’s national director of hospice and palliative care, says that the death rate among veterans is growing at about eight percent a year, while the number of veterans over age 85 will triple between 2000 and 2010. “We are being inundated with veterans from World War II and the Korean War who are dying,” he explains. “The sense of urgency in the VA is even greater than in the private sector. We literally have two years to have all our hospice and palliative care resources up and running.”

Palliative care experts say that the VA has made remarkable strides in meeting that goal. As Dr. Shreve explains, the VA has beefed up its palliative care services through a series of system-wide initiatives.

In 2003, for example, the VA began requiring all of its medical centers to have a palliative care consult team. These interdisciplinary teams include physicians, nurses, social workers and chaplains. At many facilities, these teams not only work in the hospital, but visit nursing homes and even patients’ homes.

The VA has also been involved in innovative programs to train residents in palliative care, and it recently created six palliative care fellowships that train not only physicians and nurses, but social workers, psychologists, pharmacists and chaplains. It is a unique program that has been praised by palliative care experts everywhere.

The VA has done such a good job of boosting its involvement in palliative care, in fact, that Dr. Shreve says hospices around the country are referring veterans who have never stepped foot in a VA hospital to their local VA for end-of-life care. He says he takes this as the ultimate complement, because these hospices actually lose revenue by discharging patients from their own facilities to the VA.

“These people are being referred to us for the right reasons,” he explains. “They are coming to our facilities for the most difficult three to five weeks of life.”

Artificial dichotomy

In the mind of longtime advocates like Dr. Meier, who also serves as director of the Center to Advance Palliative Care, a program funded by the Robert Wood Johnson Foundation, the U.S. health care system could use a similar type of overhaul. Part of the challenge, she says, is that too many physicians and patients think of palliative care as something to be initiated only after all other treatments have failed.

Physicians must constantly try to balance their instinct to cure and heal with the desire to comfort and offer palliative care. “We have to hold two ideas in our heads simultaneously,” Dr. Meier says. “The first one is that we should do everything appropriate and effective to cure or prolong life. At the same time, we should do everything we can to reduce suffering and improve quality of life.”

The trick, she says, is that many physicians wrongly perceive these two missions as mutually exclusive. “Either we are doing everything possible to try to prolong your life,” she explains, “or when there is quote ‘nothing more that we can do’ unquote, only then do we make the switch to providing comfort measures.”

“This dichotomous notion that you can do one thing alone and then the other thing alone later has nothing to do with the reality of what patients and their families go through,” Dr. Meier continues. “The palliative care movement is trying to say that we’ve got the life-prolonging half of it right, now we need to get the other half of the equation “the focus on quality of life “right.”

She points to the example of the young woman with leukemia. “It would be ridiculous to say to this young woman and her family that only when they were ready to give up and allow her to die, that’s when we’ll manage her symptoms,” she says. “That’s what the either/or model means for patients, and it’s wrong.”

The role of hospitalists

Where do hospitalists fit into the picture? The good news is that most of the physicians interviewed for this article agreed that for the most part, hospitalists do a good job of tapping into palliative care services when they’re available. That said, there is still plenty of room for improvement.

“Sometimes even inpatient physicians don’t recognize when a patient has moved beyond the point of no return, where they’re definitely in the dying stage of their illness. Patients are clearly dying and still having procedures done, they’re taking medicines that will help them if they live 10 years, but not the next week or two,” says Terry Gutgsell, MD, chief medical officer for Hospice of the Bluegrass in Lexington, Ky. His program operates palliative care services in two nearby hospitals.

Dr. Lynn, for example, recalls how at an annual meeting of hospitalists several years ago, she presented the case of an elderly man who was suffering from emphysema, with no real progress anywhere in sight. When asked if they would want to be offered terminal sedation instead of a ventilator in similar circumstances, nearly 90 percent of the hospitalists in the audience answered yes. Very few, however, said they had ever offered that option to their patients.

“They always feel like they can defer to the primary care physician on these tough issues,” Dr. Lynn explains. “One thing that needs to come through loud and clear is that whoever is in the position of making these decisions and talking to patients needs to start doing it.”

While she acknowledges that hospitalists often worry about stepping on referring physicians’ toes, she says the reality is that all too often, end-of-life concerns go unaddressed. As a result, hospitalists need to stop worrying about the etiquette of who does what and fill the void. “Let’s get to the point where we have a problem of redundancy,” she says. “We can deal with those problems when they arise.”

How exactly do you know when a palliative care consult might be in order for your patient? To answer the same question for hospice, physicians often ask a simple question: Would you be surprised if your patient dies in six months? If you wouldn’t be surprised, the conventional wisdom goes, you should consider talking to the patient about hospice.

That same question, however, is too narrow to help you take full advantage of palliative care services, which can help a much broader range of patients. The best way to discover palliative care opportunities in your patients, experts say, is to avoid focusing solely on the illness at hand.

“I would ask if your patient is suffering and you haven’t been able to help,” says Dr. Gutgsell from Lexington. “And I mean suffering in any sense of the term, whether it’s physical, emotional, or social issues with their families. Are you having trouble communicating with your patients and their families? Are they having trouble understanding the situation? That could be a sign to request a palliative care consultation.”

In some cases, however, the illness itself may be the clue that a palliative care consult is in order. “Hospitalists know the prognosis of class IV congestive heart failure,” says Tom Smith, MD, chairman of the division of hematology/ oncology and palliative care at the Virginia Commonwealth University Massey Cancer Center. “It’s just as bad as widespread pancreatic cancer. They just don’t always think of it in the same way.”

Overlapping missions

The palliative care experts interviewed for this story urged hospitalists to take advantage of a unique opportunity to improve patient care and to meet their mission as stewards of the health care system.

Dr. Smith says that inpatient physicians like hospitalists, who typically don’t have a long-term relationship with their patients, may be uniquely suited to discuss end-of-life care issues. While that may sound counterintuitive, he says data and experience back him up.

He points to a study published in 2000 in the Journal of Palliative Medicine on the willingness of cancer patients to talk to physicians about advance care planning. A research team led by Elizabeth B. Lamont, MD, found that while many patients said they did not want to talk to their oncologist about these issues, they would talk to admitting physicians who they have never met and don’t know.

The article offers several possible explanations for the findings, but Dr. Smith thinks that patients often have trouble talking to physicians they know about difficult issues like do-not-resuscitate orders. He and other attendings in the VCU oncology unit have all had experiences that support this theory.

While some patients he has treated for days or months are reluctant to make decisions about code status or advance directives, attendings just rotating onto the service can often help patients break through the impasse.

“A physician rotating onto the service who has never met the patient can sit down at the bedside and have a frank discussion more easily,” Dr. Smith says. “I’ve been able to do the same with other physicians’ patients. These issues are very difficult, and it’s probably easier to discuss them with someone with whom you’re not emotionally attached.”

Dr. Smith has some advice for hospitalists: “If these issues have not been addressed by the oncologist,” he says, “they aren’t likely to be addressed anytime soon. Recognize that it may be easier for patients to talk frankly with you than with their oncologists, cardiologists or liver transplant doctors.”

Whether it’s easy or not, say others, hospitalists may find that working more closely with palliative care services is a must if they’re going to achieve their mission of wisely managing care.

Dr. Meier from Mount Sinai says that the aging of the population and the surge of technologies that can prolong life without restoring health “think of patients who never come off ventilators “represent a challenge and an opportunity for hospitalists, who hospital administrators view as their go-to physicians. “Hospitalists are expected to ‘do something’ about this,” she says.

Dr. Meier adds that hospitalists who lack key skills in doctor-patient communication, managing symptoms, setting goals with patients, and discharge planning for the sickest and most vulnerable patients are going to be hard pressed to meet their mission.

“These are the patients who are blocking beds and spending weeks and sometimes months in acute care hospitals,” she explains. “I think it’s safe to say that for hospitalists to continue to be effective at both improving quality and constraining costs, they must have training in palliative medicine.”

Edward Doyle is Editor of Today’s Hospitalist.

Palliative medicine resources

“¢ The Center to Advance Palliative Care Web site offers an extensive list of resources, including information on CME meetings, publications, templates, clinical guidelines, lists of programs, and resources for patients and families.

“¢ The Center for Palliative Care at the Harvard Medical School offers continuing education in palliative care, including an in-depth, two-week faculty development program.