Is Hospice Movement Going Beyond End-of-Life Care?

by Judy Roberts

Steubenville, Ohio — Families who have contacted the nonprofit Hospice Patients Alliance are raising important questions about hospice as a movement.

Although hospice's stated mission remains that of providing compassionate and dignified care to people at the end of life, some are asking whether hospices are starting to go beyond that role by hastening death instead.

Since the first hospice program was started in the United States in 1974, hospice organizations have served more than 1 million patients at the end of life by providing a range of services dealing with management of pain and physical symptoms and psycho-social needs.

Many families who have had a hospice experience speak positively, even glowingly, of it, saying a hospice was able to help them at a difficult time in a way traditional health care could not.

But, especially since the March 2005, imposed-starving death of Terri Schiavo, reports of a dark side to the hospice movement are emerging.

In the state of Oregon, for instance, legalized assisted suicide takes place in some hospices, according to Rita Marker, executive director of the International Task Force on Euthanasia and Assisted Suicide in Steubenville, Ohio.

Even in cases where the hospice staff does nothing more than provide support to the family during an assisted suicide, allowing the suicide to occur can be seen as a form of participation in evil, Marker said.

Although such developments don't necessarily mean that hospice as a movement has changed, Marker said consumers need to be cautious before turning themselves or a loved one over to hospice care.

"You need to know who is in charge, what the protocols are, what the philosophy of that hospice is, and where they stand on the issue of food and fluid," she said.

A spokesman for the hospice movement said that hospices neither hasten nor prolong dying. Stephen Connor, vice president of research and international affairs for the National Hospice and Palliative Care Organization, added that the Alexandria, Va.-based group has a longstanding board resolution against assisted suicide.

Where assisted suicide is legal, Connor said, a hospice patient cannot legally be discharged because he or she wants to take a lethal prescription. In those cases, he said, the staff may be present to support the patient's family.

Food and Water

Connor said his group's standard on medically administered food and hydration is that "people have a right to decide whether they want those interventions or not. And a decision about whether they should have them or not resides with the patient, usually made in the context of a family system. They ought to decide whether they want it or don't want it, and those wishes should be respected."

Connor said hospice does allow the withdrawal of food and hydration, even when the patient is not in immediate danger of death, although individual hospice programs vary in their policies on medical nutrition and hydration. Some do not allow patients to have intravenous fluids or feeding tubes, for example, while others may permit them.

Former hospice nurse Ron Panzer called hospice "a wonderful service if done with integrity and morality." But, since founding the Hospice Patients Alliance in Rockford, Mich., in 1998, he has heard from patients, families and caregivers who have concerns about hospice care, ranging from overmedication to refusal of food and fluid.

Panzer, who now works in home health care, claims that some hospices eagerly hasten death and fight every attempt to prolong life.

"They interfere at every step in ordinary care," he said. "They'll pull the rug out from a patient by removing food, hydration and medications, and refusing to provide treatment for easily treated infections."

Church teaching is clear on the subject. Even when death is thought to be imminent, the Catechism of the Catholic Church (No. 2279) states that "the ordinary care owed to a sick person cannot be legitimately interrupted."

Richard Doerflinger, deputy director of the U.S. Conference of Catholic Bishops' Secretariat for Pro-Life Activities, said even though a person is terminally ill, assisted feeding can still be a form of basic care that should be provided unless and until it is actually doing more harm than good to the patient.

Pope John Paul II, in an address to the international congress on "Life-Sustaining Treatments and Vegetative State: Scientific Advances and Ethical Dilemmas" on March 20, 2004, said: "The administration of water and food, even when provided by artificial means, always represents a natural means of preserving life, not a medical act. Its use, furthermore, should be considered, in principle, ordinary and proportionate, and as such morally obligatory, insofar as and until it is seen to have attained its proper finality, which in the present case consists in providing nourishment to the patient and alleviation of his suffering."

The church teaches that assisted feeding can be validly discontinued only if it no longer provides life-sustaining nourishment, as in the case of someone in the end stages of cancer or if the means themselves are doing more harm than good to the patient, Doerflinger pointed out.

"The problem that can arise in hospice," he said, "is that hospice care has increasingly been accepting more patients who have degenerative conditions that are not end stages of terminal illness and yet [hospices] may still have broad policies of not starting tube feeding, policies which would be more appropriate for the truly terminal conditions."

'Terminal Sedation'

Indeed, according to the National Hospice and Palliative Care Organization, in 2004, just 46 percent of hospice patients had a diagnosis of cancer. The top five diagnoses among non-cancer patients were end-stage heart disease (12.2 percent); dementia (8.9 percent); debility (8.2 percent); lung disease (7.1 percent), and end-stage kidney disease (3.1 percent).

Robin, a Baltimore woman who asked that her last name not be used, said her father, a 69-year-old Parkinson's disease patient, was admitted to a hospice in 2000 at the request of her mother. Thirteen days later, he was dead.

Robin said she believes her father was starved to death.

"My father wasn't terminal," she said. At the time he was admitted, she added, he was having difficulty swallowing and had lost the ability to speak. However, she said he made it clear to her that he didn't want to go to the hospice because he grabbed her and started to cry as he was being taken away. Once in the hospice, she said, no effort was made to feed him."

Robin said her father's chart indicated he was being given morphine and Haldol, a drug used to treat patients with psychosis and chronic brain syndrome, or dementia. Within two days of his admission, she said, he appeared "like a vegetable."

"They kept him so drugged and his mouth was very bloody because he wasn't getting anything in his mouth," she said.

Panzer said in such cases patients may die of what he calls "terminal sedation" in which sedation is given with minimal or no hydration. "They don't die of starvation," he said, "but because the circulatory system collapses for lack of fluid."

Daughter of Charity Sister Carol Keehan, president and chief executive officer of the Catholic Health Association, said making sure a hospice patient is not overmedicated is a valid caution.

"But the people who have the most experience with managing pain and pain control without overwhelming you are the hospice people," she said. "They're very good at using adjunct techniques, whether it is mild relaxants and lower doses of narcotics, or things like massage and nerve blocks, things that allow you to control pain" without being so medicated that one is "out of it."

Robin said she is convinced her father would have lived another 15 years had he not been taken to the hospice. "They talk about quality of life. My father, even though he was not able to walk around and talk to people, certainly got a huge grin on his face whenever he saw my children," she said. "And that was a couple times a week. He still had joy in his life, and who has the right to take that away?"

Panzer said families should learn what services are appropriate in hospice and make sure that, if medication is being given, it is because there is a symptom calling for it.

"If someone is in severe pain, the family should not be afraid of pain medication," he said, "but when there is no complaint of pain, then increasing doses [of pain medication] is an act of murder."

Dr. William Chavey, a Catholic and assistant professor of family medicine at the University of Michigan, said the church supports giving narcotics such as morphine for pain or the discomfort that comes with shortness of breath, but would not condone using them to actively hasten death.

It is understood in such cases, he said, that in the attempt to give the appropriate amount, someone's death might be hastened. "But if the intent is to take away their suffering and not to hasten their death," he said, "then this is acceptable. But if the intent is to hasten death, it is not acceptable."

This article is the first of a two-part series. Next: What constitutes good end-of-life care, and what questions should patients and families ask?

Judy Roberts, based in Graytown, Ohio, is a National Catholic Register correspondent.

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