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Finally
(or Not), Relief By Beth Baker Special to The Washington Post August
26, 2003
In 1982, when physician Charles Harrison was an intern, he took care of a patient with pancreatic cancer. The man, who also had jaundice, turned to Harrison and asked, "Why is this happening?" Flush with knowledge from University of Pittsburgh School of Medicine, Harrison launched into an explanation of how the tumor was pressing on the bile duct. "He stopped me," Harrison recalls, "and said again, 'But why is this happening?' I thought he was talking about his jaundice. He wasn't. He was talking about his life." Harrison felt ill-prepared to discuss the man's question. But it stayed with him. Twenty years later, he decided to turn his medical expertise toward helping patients struggling with serious illness. Giving up an anesthesiology career with the military, he received specialized training in the emerging field of palliative medicine. He is now medical director for Palliative Medicine Consultants (PMC) in Gaithersburg, a subsidiary of the nonprofit Montgomery Hospice and one of the few palliative medicine practices that is not hospital-based. "I became interested in pursuing interventional pain management, specifically for cancer patients," Harrison says. "I discovered how much I like talking to patients -- which is not an easy thing to do from the venue of an anesthesiologist, as you can well imagine." Palliative care shares the same goals as hospice care: providing patients relief from pain and other unpleasant symptoms and offering them and their families a wide range of support services. But unlike hospice programs, which are targeted to dying patients, palliative medicine may be used to help those who are pursuing curative treatment and who may go on to live for many years. Studies of the effectiveness of palliative care programs show that they significantly reduce patients' pain levels and control symptoms such as fatigue, anxiety and nausea. Palliative care also reduces hospital stays and pharmaceutical costs and increases patient satisfaction and quality of life, according to the New York-based Center to Advance Palliative Care (CAPC). Palliative care services are covered by Medicare and most insurance companies. Six years ago, palliative care programs were virtually unknown in the United States. But according to the American Hospital Association, more than 17 percent of community hospitals and 26 percent of university hospitals now have such programs. Earlier this month, Virginia Commonwealth University's Massey Cancer Center in Richmond was awarded a $750,000, three-year grant by the Robert Wood Johnson Foundation to teach other institutions how to create effective palliative care programs. Although there are no data on the number of palliative care programs unaffiliated with a hospital, experts in the field say practices such as PMC are a rarity -- and desperately needed. "It's critically important since 99 percent of serious illness occurs at home and in the community," says CAPC director Diane Meier, who is also a professor of geriatrics and internal medicine at Mount Sinai School of Medicine in New York. "Most of the burden is carried by the patient and family, along with the community doc, struggling with various levels of resources and knowledge about palliative care. If we want to reach the patients in need, we need to get out there." Following the
Pain Dorothy McGeever of Silver Spring, for one, is grateful he feels that way. She calls Harrison "our angel from God who came at a horrible time in our lives." Last summer, her husband of 41 years, Jack McGeever, 64, was diagnosed with an aggressive brain tumor and given just a few months to live. She says she was told he could have hospice services only if he acknowledged that his prognosis was hopeless. "I knew he didn't want to hear that at the time they wanted to tell him," she recalls. Instead, he opted for aggressive radiation therapy. When a friend gave the couple a pamphlet describing PMC's services, Dorothy McGeever phoned for an appointment. What happened next still amazes her. Harrison called and said he would like to come to their home and meet with them. His first visit lasted three hours, even though it was then unclear whether the McGeevers' insurance would cover his services. He conducted a thorough examination of Jack McGeever and talked with him one-on-one, then had a lengthy discussion with family members, even answering the questions of the youngest grandchildren "in a gentle, truthful way," says Dorothy McGeever. "The minute he walked into my life, that was it," she says. "I just never felt that I didn't have an avenue to go to." Harrison managed her husband's symptoms, simplified his medication schedule and provided emotional support. As her husband's condition deteriorated, the toll on McGeever grew, leaving her unable to sleep. Harrison suggested the couple spend a few days of respite care at Casey House, a 14-bed facility in Rockville that is run by Montgomery Hospice. There, McGeever spent the night with her husband while nursing staff assisted with his care. Other family members could visit 24 hours a day. Jack and Dorothy returned home in a few days. Throughout her husband's illness, Harrison kept in close touch, McGeever says. "When I was at my wit's end, I would beep Dr. Harrison and I could barely hang up the phone and he was calling me back." In October, Jack McGeever returned to Casey House, where he died. "If you have to go through something as horrible and traumatic as that," says Dorothy McGeever, "you need someone like Dr. Harrison and his organization." Comfort -- and
More "Families believe you come to hospice when nothing can be done," says Harrison. "But we feel both pain and symptoms can be addressed as aggressively as any curative therapy. There is always something that can be done. That something may not be reducing the size of your tumor or curing your leukemia, but there's always something," even if it's simply offering comfort and companionship during a patient's ordeal. "I see myself as providing presence, more than anything else, to these people who are dying," he says. With his shaved head, soft voice and gentle smile, Harrison is a soothing, even Zen-like presence. He has an elegant, thoughtful way of speaking, as in, "Do you know the word 'patient' comes from the Latin word meaning 'the one who suffers'? If we don't recognize that component of suffering and enter into that suffering with the patient, then I think we're doing them a real disservice." Viewing his work as a vocation rather than a business is important to him. Seeing patients as "clients," or worse, "customers," he says -- and here he practically shudders -- reduces the role of physician to that of "shoe salesman." It's perhaps not surprising that Harrison is midway through a master's degree in divinity. Just as he pursued a University of Pennsylvania fellowship to learn pain and symptom management, he says, a divinity degree will give him additional tools to help patients. "Becoming involved with someone's spiritual hunger was something that I felt a call to," he says. Patients facing death or serious illness, even if they are not religious, he finds, wrestle with spiritual questions of transcendence and life's meaning. A Lifetime of
Preparation What also helped prepared him for palliative medicine, he says, was his work as an anesthesiologist at the Veterans Affairs Medical Center in Baltimore and Walter Reed Army Medical Center in the District. Anesthesiologists, after all, must be knowledgeable about nerve blocks and intra-spinal analgesia techniques that have application for pain relief. In addition, Harrison says, they view themselves as guardians of patients as they undergo surgery. They're also not burdened by the notion that if they can't cure a patient, they have failed -- a concept that Harrison believes prevents many physicians from giving compassionate end-of-life care. Often it is not until death is near that PMC gets a referral. But patients are best served by having a palliative care team involved as soon as they are diagnosed with a serious illness -- "to build the trust relationships, be a resource and really help foster those discussions about the whole psychological and social suffering that occurs," says Anna Moretti, a PMC nurse practitioner who helped shepherd the practice into being. Busy physicians simply don't have the time to offer many of the services PMC provides. For example, PMC's clinical social worker, Adell Blankenbaker, coordinates care as a patient moves among specialists and moves between home and various facilities. She counsels families on advance directives -- a patient's wishes for his end-of-life care -- and how to discuss serious illness with young children. She also keeps a close eye on caregivers, who are often overlooked. "They often let their own health slide," she says. "Nobody asks them how they're doing or how are they handling their loved one's illness. I give them a chance to talk about how it is for them emotionally." Not Shy About
Death Penny Gladhill, patient and family manager of Hospice Caring, a nonprofit agency in Gaithersburg that provides free, non-medical services to patients, agrees. "He is the one doctor I know [who], when we are in a really tough situation, when some of our patients can't leave home and really need palliative care, he will go," she says. "He and his staff are a wonderful resource for us." Despite such reviews, the biggest challenge for the fledgling practice is drumming up business. Palliative medicine is not exactly a household term -- and many physicians have not yet embraced the specialty. "The greatest resistance comes from oncologists," says Alexander. "They believe they know how to take care of all these symptoms, because they've seen them so much." But, she says, pain and symptom management is a rapidly evolving field. Harrison assures colleagues that he, like a cardiologist or any other specialist, will complement, not supplant, their care. To get referrals, Harrison gives presentations at hospitals, meets with oncologists and goes on medical rounds in intensive care units. To date, he is credentialed to offer his services at Suburban, Montgomery General and Shady Grove Adventist hospitals. Patients can also contact PMC directly, without a physician referral. Until it becomes self-sustaining, PMC relies on financial support from Montgomery Hospice. "We knew in its infancy it would lose money," says Montgomery Hospice president Ann Mitchell. "We fully expect it to break even in the next year or so." PMC ran a loss of roughly $250,000 the first year and $125,000 the second year. Harrison predicts palliative care will eventually become the standard for patients with advanced illness, as more experience its benefits. Medicine's "curative focus," he says, is incomplete and "leaves people who are dying feeling that at any moment they will be abandoned by the health care system." "What gives me satisfaction in doing this type of work is that patients now realize there's a doctor in their life who is not shy about talking about dying, because I'm not invested in trying to reverse their illness. I don't bring that psychological baggage that would impede my care for them. I think every physician is well-meaning in trying to really care for their dying patients. They just don't know quite how to approach the dying process."
Copyright
© 2002 Global Action on Aging
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