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

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

Contact: Tom Rickey
University of Rochester Medical Center

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