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Care at the end of life
By Russell K. Portenoy
Like most Americans, Madeleine Corbett and her husband, John Meneghello, had no idea what the term "palliative care" meant. And like most Americans, they found out only when critical illness struck.
In September 1999, Corbett developed a hacking cough that led to a diagnosis of lung cancer. She was only 56 and otherwise healthy, and she wanted to fight hard. So her oncologist at the Beth Israel Medical Center in New York treated her aggressively with radiation and chemotherapy. Soon after the diagnosis, Medallion’s cough became so severe that her oncologist called in a palliative-care specialist in the hospital's Department of Pain
Medicine and Palliative Care.
Palliative care describes health care that tries to relieve pain and suffering for patients with life-threatening illnesses while giving them and their loved ones information and support.
"Hospice provides palliative care. It is widely considered to be the model for quality, compassionate care at the end of life," said Ken Wasiniak, Hospice Manager at Robinson Memorial Hospital in Ravenna. "Hospice care involves a team-oriented approach to expert medical care and pain management, as well as emotional and spiritual support expressly tailored to the patient's needs and wishes."
Research by the National Hospice Foundation says that Hospice care offers Americans all they say they want at the end of life; to have their wishes honored, to die at home, to die free of pain, to have support from and for their family and to have care customized to meet their needs.
Typically, the palliative-care specialist works with a specially trained team that includes a doctor, nurse, social worker and chaplain. Often pharmacists or rehabilitation specialists become involved.
"Robinson's Hospice team brings expertise in working with physicians to devise ways to keep the patients at home," Wasiniak said. "Members of our interdisciplinary team includes social workers, registered nurses, home care aides, a chaplain and trained volunteers."
Nurses working with Hospice at Robinson are supervised by a Certified Hospice Palliative Care nurses. The team also has a certified oncology (cancer) nurse on staff.
For the year and a half that Madeleine lived with the disease, her doctor and palliative-care team worked together to help with one distressing problem after another.
"In working with a patient, the most important item for the Hospice team is management of physical pain," said Wasiniak. "Until that is taken care of, nothing else matters. Our nurses are trained to assess the patient's comfort level. They work closely with the primary care physician to get pain under control."
According to government statistics, most of the 2.5 million people who die annually in the United States have incurable diseases, such as cancer, AIDS, or diseases of the heart, lungs, liver, kidneys or nervous system.
Most deaths follow long illnesses, extending over weeks, months or years, leaving a lot of time for pain, emotional upheaval, isolation and spiritual distress that rob any joy from the last days.
Good palliative care not only relieves pain and other symptoms and offers practical assistance for patients and caregivers at home, it encourages discussion about values and decisions in planning for medical care, and respects these decisions after they are made.
"Many physicians and families don't realize how much care can be provided at home," Wasiniak said. "Sometimes patients think the care they need is too technical to be provided in the home, but that's not so. There is so much we can provide: hospital beds, as well as oxygen, walkers, wheelchairs and beside commodes. Also, most patient's pain or other symptoms can be managed on oral medications. Stereotypes they may have of IVs or shots are often painful and unnecessary."
And just as importantly, the team was willing to talk about dying while helping Corbett and Meneghello continue living.
For some patients, knowing the disease is incurable drives a need to talk about the end of life, to express hopes and fears, consider religious or existential issues or think about ways of helping the family or contributing something that will outlast themselves.
Studies have shown that most doctors have difficulty with this communication. A training program in palliative care developed by the American Medical Association, Education of Physicians in End of Life Care, spends as much time teaching communication skills as symptom control. A similar training program for nurses is now being developed.
The medical profession is slowly getting on board in other ways. The American Board of Hospice and Palliative Medicine was established more than six years ago to set standards for specialist physician training and certification. To be certified, a doctor must have broad experience in caring for dying patients and pass a test that evaluates knowledge of symptom control, communication and ethics. More than 800 doctors are now certified.
Soon, experts say, this medical discipline will have standing like any other specialty, a situation that now exists in the United Kingdom, Australia and several other countries. Recognizing the need for change, many hospitals are now establishing specialist palliative-care consultation teams. According to a 1999 survey by the American Hospital Association, 20 percent of hospitals now have some type of specialized service to help patients and families with end-of-life care.
Experts agree that progress will be slow. Finding a primary doctor who understands the principles of palliative care is key. This has been particularly important for Joan Beerman, an independent, 54-year-old woman who has been living with advanced cancer for more than six years. "I want my doctors to be focused on quality of life. I want my values respected and consideration for my family."
Palliative-care specialists encourage all patients to talk about the kind of care they want and plan for the possibility that health decisions will be needed most when they can't speak for themselves.
Experts in palliative care also emphasize the need for family support. A recent study showed about one-third of caregivers have serious unmet needs, and another noted that one-third of families lose all their savings while caring for a loved one with a serious illness. Because of this impact, palliative care takes the whole family into consideration.
The palliative-care philosophy is the same one that guides hospice care, which offers care, usually at home, at the end of life. In the United States, hospice care was established almost 30 years ago, and about a decade later, Medicare and Medicaid offered reimbursements
Ideally, as Madeleine Corbett and John Meneghello learned, palliative care and hospice can be combined to help the patient and family throughout the course of an illness. Three months before her death in March, Corbett entered the hospice program, remaining at home with regular visits from the hospice team. When she became weaker she turned to the hospice and palliative-care inpatient unit which allowed her to remain home during her last days. Days later, she died comfortably.
For John Meneghello, looking back on his wife's long illness expert palliative care provided "an easing of tension, aneasing of what people go through."
This is the fourth part of a 15-part series on death and dying. The series is sponsored by Knight-Ridder News Service, the Record-Courier, and Robinson Visiting Nurse & Hospice in Ravenna.
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