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Dad's death helps national expert evaluate end-of-life care

University of Rochester Medical Center

End-of-life options for seriously ill patients have improved considerably, but still have a ways ago, says a national expert who drew upon the recent experience of his father's death to take stock of the status of end-of-life care in the United States.

Timothy Quill, M.D., of the University of Rochester Medical Center, was asked by the New England Journal of Medicine to provide an update on developments in the field since 1991, when he wrote an article for NEJM detailing his role in the death of a terminally ill patient. Quill turned to his own father's recent death in the September 2003 to help illustrate the good and the bad in end-of-life care, in a piece in the May 13, 2004 issue of NEJM.

Quill's father, Joseph, died at the age of 84 after developing dementia that worsened rapidly after a bad fall at his home. His confusion and agitation skyrocketed and only worsened as doctors tried treatment after treatment. Soon after doctors treated his confusion and agitation with Phenobarbital, a seizure medication that can also be used as a sedative, Joseph died.

In the months leading up to his father's death, Quill's family experienced several improvements in end-of-life care from what he witnessed in 1991:

· Greater availability of palliative care, to keep the patient as comfortable as possible while simultaneously treating the underlying disease. While his father initially wanted any treatment that might help him live longer, Quill says, his father also wanted to maintain a high quality of life as long as possible. His father initially consented to a do-not-resuscitate (DNR) order, but wanted all other treatments that would help him live longer and better. "Fourteen years ago, palliative care really was just barely on the radar screen," says Quill. "Now it's really been thought through and is much more available."

· As time went on and several treatments failed, it became clear that Joseph Quill was only getting sicker and sicker. At this point, he wanted treatment only to ease his suffering - the type of treatment one finds at hospice. But it wasn't clear that he was going to die within six months, the time frame that Medicare has traditionally used to decide whether to accept a patient into a hospice program. "He never would have gotten into a hospice program 14 years ago," Quill says, "but many programs have liberalized their admission criteria, so he got in." Joseph Quill died two months after entering the hospice program.

· Shortly after he entered the hospice program, his suffering increased markedly. While there was no physical pain involved, Quill says, the agitation and confusion accelerated and were unbearable. "He was in agony - we probably would have had to place him in a nursing home unless things settled down - which was my Dad's worst nightmare. He had been a very active, physical person, and he couldn't make sense out of what was happening." But last-resort options have also expanded in the past 14 years and now include an option known as "palliative sedation," which is available to ease the suffering of patients with severe symptoms that cannot otherwise be relieved, such as shortness of breath or agitation. Joseph Quill, who had asked his doctors to make him as comfortable as possible, was given a sedative to ease his suffering.

Early on in his illness, his father received excellent symptom management at the same time he was given state-of-the art dementia treatment. (Along the same lines, Aetna has recently come out with an experimental program for seriously ill patients who are expected to live a year or more, enabling them to enroll in hospice while still receiving aggressive medical care.) Later on, his father was accepted into a hospice program although it wasn't clear that his death would occur within six months.

Quill's extensive knowledge helped him navigate the system better than most: He has written four books about end-of-life concerns and palliative care and took the issue of physician-assisted suicide to the Supreme Court in 1997.

"All the elements of good end-of-life care are known right now, but what's not there is any kind of consistent availability," says Quill, who is professor of Medicine, Psychiatry, and Medical Humanities and the head of the University's Program for Biopsychosocial Studies. "My dad was able to get the care he did largely because I know how the system works. But it's so uneven right now. We need to get the systems much more sophisticated and evenly available.

"All of this is still very fragile because it's hard for us as a culture to come to grips about what good end-of-life care really is. How do we support excellent palliative care while at the same time supporting aggressive medical care?"

It was partly the uncertainty of his father's prognosis that caused Quill chose to draw upon his father's death as an illustration of some of the issues involved in end-of-life care, he says.

"What was unique about this process is that we don't usually think of hospice care for people with dementia," says Quill. "We usually think of hospice in terms of cancer, or maybe heart failure - but dementia is different, because the prognosis is so uncertain. But as he got sicker, my father did not want any life-prolonging therapy. He wanted aggressive symptom management, and if possible to say in his own home surrounded by family. That is what hospice is about. If you ask people what scares them about dying, pain is up on everybody's list, but for a lot of people, having dementia or being agitated or out of control are even higher on the list."


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