When I spoke to the Wisconsin Hemlock Society on “Educating Physicians about End of Life Care,” my supportive wife came to listen. “At least one person will applaud!” said the greeter when my wife indicated the reason for her attendance. She was one of many who stood and applauded, grateful that a physician would boldly confirm the importance of comfort at the end of life. Most were there because a parent, spouse or sibling had died with unrelieved pain. They wanted to ensure access to appropriate relief of suffering throughout their lives and at their own death. They were not asking that physicians end their lives, but asking physicians to allow them to die naturally with appropriate relief of suffering. This is the practice of a palliative care physician, working with nurses, social workers, counselors and chaplains to relieve suffering in those with advanced disease.
This avoidance of suffering was not the issue considered in the recent Supreme Court decision on PAS. State rights were the issue with the justices ruling that the US attorney general could not punish Oregon physicians who followed that state’s law. Many of these same justices, in a 1997 ruling, had indicated that states could pass laws allowing PAS (another states rights issue). But in that ruling they indicated that US residents did not have a constitutional right to PAS. The Justices however did state that US residents had a right to Palliative Care.
Palliative Care, in the form of hospice, was an essential part of health care at the beginning of the 20th century. However the advent of hospitals, antibiotics and other death delaying (or life prolonging) therapies saw healthcare move in a different direction. As a reaction to the emphasis on technology, the late 60s and 70 saw the rejuvenation of palliative care through the modern hospice movement. This movement, with its base at St Christopher’s Hospice, London, not only focused on care of the dying but also on research and education. We now see palliative care practiced in hospitals, long-term care facilities, hospices and our own homes.
We know that most US residents do not have access to optimal palliative care. 50% of patients referred to hospice die within 3 weeks, 20% with a week. Only 25 percents of US residents die in the care of hospice, despite a benefit available to all Medicare recipients. There is a growing trend for hospitals, where the majority of US residents die, to include palliative care in their services. UW Health has had such a program for 10 years, conducting research in palliative care and educating students and residents both within the hospital and at HospiceCare Inc.
The provision of palliative care is closely linked with the request for PAS. The Dutch experience shows that patients with more severe symptoms are more likely to request PAS. Requests for PAS change throughout end of life care. Many of those euthanized in Holland do not meet the criteria as outlined by the legislature. We can relieve suffering at the end of life, even sedating (not killing) patients to ensure their comfort when faced with severe symptoms. I often say to patients “I will not withhold medicines directed at your comfort, even if these is a chance that these medicines hasten your death.” Rarely do I have to act in this manner, but it is reassuring to those patients worried about uncontrolled symptoms at the end of life. This principle is a centuries old premise that is even supported by recent documents from such conservative bodies as the Roman Church. The justices, in their recent ruling, have removed the fear of Federal prosecution from the minds of many physicians who practice appropriate palliative care.
The issue of PAS is not a medical one, it is a societal issue. Society, and its legislators acting on our behalf, need to determine which is more important; allowing a few individuals the ability to control the time and place of their own inevitable death, or addressing what is a major public health issue, the provision of optimal palliative care to us all. We should be saying no to PAS and yes to palliative care. None of us have a choice as to whether we will die. Just as birth is the natural beginning of our lives, death, however sad, is the natural end.
Originally published as an OpEd in the Wisconsin State Journal, 2006; Author James F Cleary