WASHINGTON (CNS) — The National Palliative Care Research Center estimates that 90 million Americans are living with serious or life-threatening illnesses and the number is expected to double over the next 25 years.
People nearing the end of life and their families often are confused about the options available to them in terms of pain control and about whether they have an obligation to use all of the life-prolonging technology available to them. These discussions are particularly lively among Catholics and in the West Coast states where physician-assisted suicide is a legal option.
In Washington, the latest state to legalize assisted suicide, Providence Sacred Heart Medical Center in Spokane offers an alternative way of dying. It provides “comfort care suites” that allow family members to stay with their dying relative in a homelike environment.
Music thanatologists specially trained to soothe the seriously ill with their voices or the playing of harps are on staff. Health care professionals participate in education programs on palliative medicine and the ethical, moral and legal issues involved in end-of-life care. A meditation garden outside the hospital is open 24 hours a day and gives family members and patients who are well enough an opportunity to experience a peaceful area of waterfalls, streams and walking paths.
At TrinityKids Care, a pediatric hospice program in Torrance, Calif., teams made up of a pediatrician, a registered nurse, a clinical social worker, a chaplain, a home health aide and specially trained volunteers help dying children and their families make the most of their last days, whether at home or in a hospital or nursing home setting. Anything from household chores to looking after siblings can be part of the hospice program, and the team also offers family counseling and grief and bereavement services when needed.
These kinds of programs are duplicated throughout the country, but too few people know about them when the time comes for them to use them.
“Most palliative care patients come in late,” said Dr. Scott Miller, team physician at the Center for Compassionate Care in Pittsburgh. On average, his patients come in three weeks before their deaths, when they could have been receiving pain management, symptom control and comfort care for many months.
Tina Picchi, executive director of the Supportive Care Coalition in Hillsboro, Ore., believes that a big part of the problem comes from the misperception that “palliative care equals hospice and is only for the end stages of life.”
Palliative care “is appropriate for anyone living with a serious illness, regardless of the prognosis,” she said. “It does not require people to limit their treatment options or to give up.”
The Supportive Care Coalition is made up of 22 Catholic health care member organizations, with more than 450 hospitals, nearly 300 long-term care facilities and numerous clinics, home health care services and hospices providing palliative care in 43 states.
“Our goal is to ensure that every Catholic health ministry has palliative care as a part of its core services — so that we are known as much for palliative care as for our concern for the poor and vulnerable,” it says on the organization’s website.
The coalition was founded by three Catholic health systems in 1994 because, Picchi says, palliative care is a natural extension of the work of Catholic health care.
“At our very roots we have a very strong belief that life is sacred, every person is truly a treasure,” she said. “From the very beginning of Catholic health care, this is the kind of health care that the religious sponsors modeled.
“The first thing that they did was to go out to the homes of people who were dying and provide very whole-person care — physical, spiritual and emotional,” Picchi said. “Palliative care is not just focused on the whole person, but the whole in terms of they and their loved ones together as a family unit. It really ought to be something that Catholic health care is taking a lead in.”
Ron Hamel, senior director of ethics at the Catholic Health Association in St. Louis, says palliative care might provide a welcome relief to a health care approach that has become too focused on what technology can do than on what a patient needs.
“Palliative care really in a sense is a return to those days when we didn’t have the technology to try to cure patients and were limited to providing relief of symptoms and companionship,” he said. “We are so technologically driven today that it is difficult to step back from the technological imperative and see that there is another way to deal with those who are critically ill and dying.”
He places some blame on the way physicians are educated, but also believes that many patients have “an inability to deal with their own finitude” and would benefit from a “more positive statement about dying within a Christian context” from Church leaders, followed by a parish-based educational effort.
Hamel also blames “both the extreme right and the extreme left” for “fostering misunderstanding about Church teaching and tradition” about the end of life.
In contrast to the position that a patient must be kept alive “at all costs,” he said, “at the heart of the Catholic approach is to neither hasten death nor prolong life endlessly.” Patients and their loved ones must weigh the benefits and burdens of a particular treatment and are not morally required to continue treatment that is “excessively burdensome or without benefit,” he added.
In some ways, Hamel said, palliative care is “nothing new.”
“It’s a return to the kind of care that was provided to the critically ill prior to all this technology,” he said. “It’s a return to our roots in the life and teaching of Jesus and in the early Christian community, which was marked by its care for the sick.”