At the end of 2009, the Montana Supreme Court found that physician aid in dying was not prohibited by law. As Montanans work to implement this new legal and medical reality, it is useful to look at the facts from Oregon, where physician aid in dying has been legal under the Oregon Death with Dignity Act for over 12 years. Oregon hospice workers offer a unique perspective and experience in understanding those facts.
I was the director of the Oregon Hospice Association between 1988 and 2008 — for 10 years prior to the implementation of ODDA and for the 10 years following. The perspective of hospice workers is significant because (1) they visit patients and families frequently in the last weeks and months of life; and (2) they are able to compare hospice patients who hasten death with hospice patients who do not. Their experience is important because 86 percent of persons who have used the Oregon Death with Dignity Act were enrolled in hospice.
I had regular meetings as director of the OHA during the first 10 years of experience with PAD. Behind closed doors, hospice workers were frank in expressing their beliefs. One area where they were unanimous in agreement was that the ODDA improved the quality of meaningful, important conversations about the end of life.
I will not offer an opinion on whether PAD is right or wrong. That no longer matters in a state where the practice is a legal end-of-life option, especially to hospices and others caring for people facing life-threatening illnesses. I am interested in doing what I can to make sure that people who are dying, and their families, are not inadvertently hurt as public policy related to this option evolves.
Following voters’ first approval of the ODDA in 1994, a series of challenges, in court, in the legislature and through the federal government, impeded the full implementation of the law. The challenges to the ODDA all have one thing in common: effectively increasing an already chilling impact of regulatory scrutiny on physician willingness to provide aggressive pain relief. Oregon’s health care community is especially watchful for threats against physicians, real and perceived, and especially vigilant in its efforts to monitor, measure and prevent pain. Uncontrolled pain was a frequent reason given for supporting the ODDA during the public debates and remains a reason for supporting similar laws to this day.
As Montanans debate how best to implement PAD, it is likely some will question whether it will deflect attention from providing adequate pain and symptom management. Fortunately in this matter, Oregon’s experience shows the opposite. Before the implementation of the ODDA, end-of-life care in Oregon ranked high in almost all indicators. Contrary to the predictions of the law’s opponents, it has remained at the top among U.S. states. Oregon’s hospital death rate is among the lowest; its home death rate among the highest. Oregon’s advanced planning rate is highest by a wide margin. In 2002, nearly 80 percent of dying Oregonians had an advance directive, and the likelihood that an advance directive would be respected was high. Oregon’s end-of-life care has continued to improve under the ODDA, and it can be expected the same will prove true in Montana.
Anticipated vs. actual fear
Research in Oregon reveals that only one of 200 individuals who are considering a request for PAD will ever ingest medication to carry it out. Research confirms, too, that it is an anticipated fear, rather than an actual fear, that will prompt a request.
Whether health care professionals personally support or oppose PAD or the concept behind it, they do not want patients to use it because end-of-life care is inadequate. It is one thing for people to access PAD because they are concerned about pain, and another for them to use it because they are experiencing pain. It is one thing to request PAD after exploring all end-of-life options, and another to use it out of ignorance of other options. It is one thing for people to use PAD because they value autonomy, and another to use it because their values are dismissed.
Ann Jackson, MBA, is a consultant on hospice and end-of-life issues. She is based in Oregon; website www.ann-jackson.com.