Palliative care focuses on pain management, alleviating suffering and offering support and hope
Hospitalized with kidney failure and in a diabetic coma, the 45-year-old man clung to life in the intensive care unit for weeks. His wife, then seven months' pregnant with their second child, didn't know minute to minute whether he would live or die. Tests would later reveal a malignant brain tumor. While the doctors at the University of Maryland Medical Center worked to keep him alive, the hospital's palliative care team provided comfort and support to him and his family, helping them deal with the gravity of his illness and to make difficult choices about his treatment.
After several months in the hospital, the man was well enough to be moved to a rehabilitation center. Eventually, he was able to go home to his wife and two children, including his newborn son, while he continued chemotherapy treatment for his cancer. "We worked very closely with this family and never gave up hope," says the Rev. Kathleen E. Corbett, R.N., M.Div., the chaplain on the four-member team.
The hospital-wide palliative/supportive care program at the University of Maryland Medical Center is designed to help patients and their families deal with chronic or terminal illnesses or life-altering injuries. More than 200 patients have been referred to the program, which started as a three-month pilot project in March 2001 and was fully implemented in February of this year.
The palliative care team is comprised of a physician, who serves as medical director, as well as a full-time social worker, chaplain and nurse. The medical center also plans to expand the team to include a pediatric nurse to work with children and their families.
"We deal with people who have life-threatening, life-altering illnesses or injuries but not necessarily a terminal diagnosis," says Jean Tucker Mann, MSW, the director of Social Work, Palliative Care and Patient Advocacy at the University of Maryland Medical Center, explaining a key difference between palliative care and hospice care.
"Patients referred for hospice care are expected to live six months or less. Some of our patients are able to go home but the illness itself has altered the patient's life forever. They could live a week or up to five years or more," says Tucker Mann, who was instrumental in developing the program.
According to Tucker Mann, the concept of palliative care can be a difficult one for physicians, who have been taught to cure disease, not simply manage pain and symptoms, and part of the program is educating the medical staff about the value of such care.
Stephen C. Schimpff, M.D., the chief executive officer of the medical center, says, "We are committed to extending the medical, psychosocial and spiritual support that is characteristic of hospice care to a broader group of individuals in need. This includes any patient, their family or loved ones who are trying to deal with life-altering illness."
"It is clear to us that quality-of-life issues are as important as medical ones to patients and families facing life-threatening and terminal illnesses. Our palliative/supportive care team promotes comfort and dignity for patients and their loved ones, and provides emotional as well as spiritual support," Dr. Schimpff says.
Tucker Mann says that the program is the first in the region that is hospital-wide and the only one funded entirely through the hospital's operating budget, rather than foundation monies.
Officials hope that eventually the program will be funded through a $6 million endowment. Last year, they raised $450,000 in private donations to support that effort.
Tucker Mann says that referrals to the palliative care program can be made by nurses, doctors, case managers, social workers, chaplains and others within the medical system.
"But we don't go forward with palliative care unless everybody involved says, "Yes." That includes the attending physician, the patient and the family," she says. Of the more than 200 patients referred to the program since July 2001, more than half received palliative/supportive care. Referrals are increasing, and Tucker Mann expects that as many as 275 patients could benefit each year.
The patients who have used the program have had cancer, respiratory or cardiac problems, or have undergone brain surgery or transplant operations. Others have been injured in automobile collisions and other types of accidents. Most have had terminal conditions.
"Many patients are at a crossroads in their lives. They are either very sick and going to get better or they're very sick and not going to get better. We try to deal with all of their medical and emotional needs," says Reverend Corbett, the team's chaplain, who finds prayer an important part of treatment. The social worker on the team, Kristin K. Laferty, LGSW, adds, "We prepare for the worst, but we always hope for the best."
The team provides a range of support services, including pain management, counseling or spiritual guidance. In the case of a Baltimore woman with advanced cancer, the team's social worker helped to arrange for someone to care for her three grandchildren who lived with her if she died so that she could stop worrying about their future and focus on her own treatment.
Hospice care is a form of palliative care. And, in the case of a 61-year-old man who was slowly dying of multiple organ failure, the team arranged for the man's family to take him home, although he was still on a ventilator. There, surrounded by family members and in familiar surroundings, he died the next day. "We were able to give him this quiet, peaceful time in his own home," says Janet Ward, R.N., the team's nurse.
Another patient, a 50-year-old man awaiting a liver transplant, was hospitalized with acute liver failure and was getting worse by the hour. Doctors feared that he might not survive long enough to get a new liver. Team members helped his wife and children weather several anxiety-ridden days, not knowing if he would live or die, until an 11th-hour transplant saved his life.
Carla S. Alexander, M.D., an assistant professor of medicine at the University of Maryland School of Medicine, is the program's medical director. She has 16 years' experience in palliative care and is a fellow and a past president of the American Academy of Hospice and Palliative Medicine. She is also the first medical director for the National Hospice and Palliative Care Organization.
The team works closely with the Visiting Nurse Association (VNA) of Maryland, which is affiliated with the University of Maryland Medical System and provides palliative and hospice care services when a patient goes home or into a nursing home. "VNA smoothes the transition from hospital to home," says Cathy Smith, VNA's director of hospice.
Tucker Mann says that in developing the program, the medical center's Palliative Care Advisory Group visited the Pain Medicine and Palliative Care Program at Beth Israel Medical Center in New York.
She says that palliative care started in other countries, such as Great Britain, where it is a recognized medical specialty. But, more and more hospitals in the United States are starting their own programs. In a recent survey of America's best hospitals by U.S. News and World Report, a new criterion for ranking hospitals was whether they had hospice or palliative care programs.
Residents at the University of Maryland Medical Center and medical students at the University of Maryland School of Medicine also receive training in palliative and hospice care.
The Daily Record, a Baltimore newspaper, recently selected Tucker Mann one of 2002's innovators of the year for her role in developing the palliative/supportive care program.
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