Its a place where people come to die.
Louise probably will be no exception. She has lung cancer, a history of breast cancer, and unresolved psychological problems.
When she arrives at the community hospice in Cambridge, Mass., David Barnard makes a point of welcoming her to Room 5, her new home. Barnard, a nursing assistant at the Victorian mansion, doesnt rush off. He sits with her as she places her brush and comb on the wooden dresser.
Every step taken in the room makes the floor creak a bit, but the hardwood has a mellow glow from the sun that shines through the rooms tall windows, beveled to catch the light. And Barnards calm, engaging manner seems to comfort her. As she continues to unpack her belongings, they talk. Barnard wonders about this woman, evidently in her mid-60s. Her appearance certainly wouldnt be mistaken for one of nobility. She has stringy gray hair, her clothes dont fit well, a button is even undone. But Barnard notices her elegant way of speaking, a kind of clipped-rhythm, mannered accent. He starts to sense a depth to her that isnt obvious at first glance. He spends more time with her, helping her get settled. At last, he must go to attend the others. He quietly leaves the room, his light step barely causing a creak from the floor.
Barnard finds himself not forgetting about Louise. Before leaving for the day, he returns to Room 5. Things have changed. As he comes to the door, he sees her in an awkward position, being restrained by two nurses. She looks terrified.
Shes had a panic attack, one of the nurses calls to him.
Barnard stays out of the way. He watches as Louise and the nurses struggle in what appears to be a slow-motion dance.
Finally, the nurses settle Louise in her bed. They raise the metal rails, with a grating clank, which will keep the patient from falling. Louise lies still, her body rigid. Her hands are balled into tight fists; her eyes squinted shut in terror. The two nurses leave the room, moving on to other patients.
Barnard remains, standing in silence several feet from the bed. He decides to ask Louise if she wants company. Her eyes stay tightly closed, but she nods yes. He moves closer to her bedside, then sits beside her and takes her hand through the rails. After a few moments, Louise opens her eyes, looking not at Barnard but at the high ceiling.
Its time to depart, she says softly.
Unsure of her meaning, Barnard asks if she wants him to go.
No, she says, still staring at the ceiling.
He wonders aloud if shes talking about her own death.
Yes, she confirms. I had a friend with cancer who told me she wished she had just taken care of things in her apartment.
Barnard considers this for a moment. Hes a man who seems comfortable with shared silence. Active silence. Then, he says, Did your friend mean she wished she had committed suicide?"
Yes, says Louise, still gazing above.
Do you wish you could commit suicide now? Barnard asks quietly.
Yes, she replies. Then, with a little prompting, but still not looking at Barnard, she begins to tell him about her life, much of it filled with loss, sickness, disappointment, and abandonment. In her 20s, she had been married and worked as an editor in Boston. Within a few years, though, she was diagnosed with breast cancer and underwent years of treatment. The cancer cost her more than her health. She says because of it, she lost her job and her husband. Alone, she did her best to raise her daughter. But chronic illness and misfortune kept dogging her. As she aged, she says she retreated from life. Poetry was her only solace.
After finishing her story, Louise turns toward Barnard and looks directly into his brown eyes.
You know, she says, you are the first person in a long time who has sat with me and who didnt make me feel they were in a hurry to get away from me. Thank you.
Barnard and Louise met nine years ago, when he was on sabbatical from his job as a professor and chair of humanities at Penn State University College of Medicine, where he led the first medical humanities program in the country.
Its probably safe to assume that most chairs at any university dont spend a portion of their sabbaticals bathing patients and emptying bedpans, which was part of Barnards job as a nursing assistant. Even more surprising, the less-than-glamorous duties werent unfamiliar to Barnard. As a young man during the Vietnam War, he was a conscientious objector, necessitating alternative community service. He served as a hospital orderly and, in so doing, became intrigued with the process of dyingand its intimate, often profound, moments. He abandoned plans to study history, pursuing, instead, a broader exploration of the humanities. Eventually he became a medical humanities scholar who, after 25 years, still finds the final journey toward death intriguing.
Death is once in a lifetime, he says. People arent going to be able to run the tape back after its over and do it again better. To be part of that unique experience is quite a role to play in peoples lives, says Barnard, who came to the University of Pittsburgh in 1999 as professor of medicine and director of palliative care education in Pitts Center for Bioethics and Health Law. Increasingly, that role is leading to the growth of an emerging multidisciplinary field called palliative care.
The process of dying, it seems, is often just as complicated as the process of living. In fact, dying may be the most complex problem of all.
In the ancient Roman Empire, places of rest or sanctuary were established along travel routes to help the hungry, the needy, the sick, and the dying. These places of care came to be known as hospitiums and, eventually, in the Middle Ages, as hospices.
This idea of caring for wayfaring strangers-in-need on their various individual journeys continued into the modern era when Dame Cicely Saunders launched the hospice movement in the late 1960s. A nurse, social worker, and eventually physician, Saunders founded St. Christophers Hospice in London and dedicated most of her career to improving care for the dying.
Today, the growing need for such services springs, ironically, from breakthroughs in medicine and biology that have extended life and, invariably, the dying process. Barnard notes a typical death a century or so ago involved a short period of illness, usually caused by infectious disease. Most deaths occurred relatively quickly. Most people died at home, surrounded by family.
Not today. Most peoples deaths, says Barnard, are now due to chronic, degenerating conditions, which usually take a longer time to result in death and are often accompanied by a lot of disability and a lot of symptoms, physical problems, and pressures and stresses on families.
The University of Pittsburghs Institute to Enhance Palliative Care has been created to ease the process of death.
Barnard, the institutes founding director, wants simply to improve care for thoseof any agewith life-limiting illnesses. His qualifications include a PhD, MTS, MA, and BA from Harvard University, Harvards Divinity School, Brandeis University, and the University of Chicago, respectively. He is well known in scholarly and clinical circles for his work in the ethics of death and dying. Recently, he was invited to write the chapter on palliative care and hospice for the newest edition of the Encyclopedia of Bioethics, the standard reference work in the field. He defines palliative care as the application of strong scientific measures to control pain and other unpleasant symptoms, coupled with spiritual and psychological support customized to benefit patients and their families.
Even for those in the field, theres some confusion about the distinction between hospice and palliative care. Barnard believes that, eventually, the term palliative care will cover all forms of comfort care.
For most people, even now, the word hospice is associated with imminent death, partly due to Medicare reimbursements. For hospice care, these policies impose a maximum time limit of six months. This puts physicians in the difficult position of pinpointing end-of-life prognosis and initiating conversations about death with people who may still be fighting to live. Such difficulties can inadvertently delay consideration of longer-term palliative care services.
Thats unfortunate, says Elizabeth Chaitin, a codirector of the Universitys palliative care institute, who also directs the Department of Medical Ethics and Palliative Care at UPMC Shadyside Hospital. Its a misconception, she says, to look at palliative care and even hospice as something that happens at the end of life. According to Chaitin (FAS 96, SOC WK 88)a clinical social worker with a doctorate in medical ethicscomfort care should be presented to all who pursue treatment for a life-limiting illness but who also want to focus on comfort. She believes that palliative care should be considered upon diagnosis.
Agreeing with her is another co-director of the institute, Rafael Sciullo, who is the former chair and a board member of the National Hospice and Palliative Care Organization. Access to hospice and palliative care could be so much greater than what it is, and it could happen a lot sooner, he says.
Sciullowho earned an MA from the University of San Diego, an MSW from the University of Connecticut, and an MS from the Hartford Graduate Centeris doing his part. He is president of the Pittsburgh-based Family Hospice and Palliative Care, which is collaborating with the University of Pittsburgh to form the institute. Family Hospice has gone from serving 42 patients a day two years ago to now serving 230 patients a day in 13 counties, making it one of the largest and fastest-growing community-based hospices in Pennsylvania.
The programs that have been the most successful nationally have been those that join a strong, leading academic institution with a strong, leading community-based hospice organization, says Sciullo.
Family Hospice has more than 280 volunteers. It offers hospice and palliative care services primarily in homes, hospitals, and nursing homes. In September, the organization will begin operation of The Quality of Life Center in a restored historic mansion on Pittsburghs North Side, the first of its kind in the nation. There, patients and families will have art therapy, music therapy, pet therapy, therapeutic massage, and even gourmet meals cooked on the premises. Later, the mansion will be renovated further to house a hospice residence, where patients near the end of life can stay.
While the Pittsburgh region is emerging as a leader in palliative care, other parts of the country are less fortunate. All of the national studies done so far, says Sciullo, indicate that lack of access to palliative care is due largely to lack of education about it. Education, he says, has to do with the professionals involved in caregiving and extending to the consumers of that carepatients and their families.
Education is fundamental to the mission of Pitts Institute to Enhance Palliative Care.
Many Pitt studentsincluding those studying medicine, ethics, and nursingtake classes and follow professors on rounds focusing on palliative care activities. This exposure takes place in hospitals, Family Hospice, senior care programs, and homes.
A course, called Learning from Patients with Life-Threatening Illness, pairs first-year medical students with people who have incurable diseases. Throughout the semester, each student spends time with one individual and that persons struggle with serious illness. Not infrequently, death comes to the ill before the semester ends.
In addition to that course, fourth-year medical students are offered an elective in palliative care.
The institutes educational activities dont end with students. An eight-week course on death and dying has been developed for people in the communitythose who are curious about the topic or, possibly, caring for someone who is seriously ill. The course is designed in modules, which can be modified for presentation to hospital staff and other clinicians, patients and their families, or other audiences.
Laura Huch (CAS 89) owns a construction and related manufacturing company in Saxonburg, Pa., and sits on the institutes advisory council. Education, she says, involves equal emphasis on internal and external communicationsthat the community knows to ask, and clinicians know when to refer people to palliative care.
As a cancer survivor, she understands the importance of palliative care. She knows, she says, what it feels like to be wheeled into a cold, empty hallway, wearing a thin gown that barely covers your backside, where you might wait endlessly for an X-ray or CAT scan, where youre alone, feeling nauseated or worse. Describing her role with the institute as a loose cannon or maybe comic relief, she helps the council with planning and marketing. I ask a lot of questions, she says. I keep them relevant and grounded.
While heartened by the regions initial strides toward improving palliative care, Barnard emphasizes that the institutes activities could be beneficial to palliative care programs well beyond Western Pennsylvania. Dying is so enormous as human experience that no single profession or way of thinking is possibly up to the job, he says.
Pitts Institute to Enhance Palliative Care will bring together, in a visible way, University experts from many disciplines, including medicine, nursing, pharmacy, social services, humanities, law, public policy, and economics. Institute researchers, for example, will tackle a range of issues, such as how best to help families work through difficult grief, how to help clinicians talk to patients about end-of-life issues, and how better to integrate team-based palliative care services into standard medical practice.
Barnard says the latest findings from institute research will be evaluated and whats found to work best will be applied directly in the community to benefit patients and their families. Meanwhile, the institutes research will be published in journals for easy access by hospitals and clinics around the world and, ideally, says Barnard, will lead to better palliative care worldwide.
Sharing that optimism is another of the institutes codirectors, Robert Arnold, a professor of medicine at the University who holds the Leo H. Criep Chair in Patient Care. The institutes activities will help advance the field of palliative care and attract interested students, faculty, and other professionals here, says Arnold. He points out that Pitt already has some of the top leaders in palliative care and related fields, adding that only a handful of similar institutes exists nationwide.
As part of Pitts palliative care educational process, Barnard stands in front of a class of first-year medical students in Scaife Hall. He turns everyones attention to the overhead screen, where there is a picture of a young, beautiful bride. She has long, dark hair and a warm smile. On the day the photograph was taken, the bride no doubt envisioned a wonderful future.
But it was not to be.
Barnard is telling Louises story, calling it Dont Just Do Something, Sit There! Sometimes, he lectures, it helps simply to be there. Often, its about listeningthe ability to listen without judgment and not feel the need to jump in and solve problems.
Louise died a few weeks after Barnard held her hand that afternoon nine years ago, simply listening to her. Not long after her death, he received a letter from her daughter. In the letter, she thanked him for the time he spent with her mother that day. She told him how Louises final weeks were spent in conversations with the hospice staff and with her family. In those few weeks, Louise came to recognize and acknowledge her strengths and her gifts against a canvas of heartache and disappointments.
Also enclosed in the letter was the picture of a young, beautiful bride. It was Louise, a person who led an authentic life and died embracing it fully.
Cindy Gill is a senior editor of this magazine.
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