Sunday, April 13, 2008

The Oregon Death with Dignity Act - Democratic Deliberation Works!

The purpose of my recent trip to Oregon was to speak about the lessons Massachusetts health care reform might have for Oregon’s health care reform process, but I also used my time to explore the current state of the Death with Dignity Act (DWDA).

As most readers know, Oregon is the only state that has legalized physician assisted suicide (the state doesn’t use that term – it sees the Death with Dignity process as part of end of life care, not as suicide). In 1994, a closely contested ballot initiative (51% to 49%) established the DWDA. Its implementation was delayed by a legal injunction, but after the Supreme Court denied a petition, the Ninth Circuit Court lifted the injunction on October 27, 1997. In November 1997 a measure asking for repeal of the DWDA was put to a vote. This time voters endorsed the DWDA by 60% to 40%. As of my visit, the law had been in effect for 10½ years.

Although support for the DWDA continued strong in Oregon, the Bush administration tried to kill it. Attorneys General Ashcroft and Gonzalez argued that the Controlled Substances Act prohibited prescription of barbiturates (the medication that physicians have prescribed) for use by patients to end their lives. The Attorneys General appealed all the way to the Supreme Court. On January 17, 2006 the Supreme Court ruled (6-3) in favor of Oregon.

The DWDA allows terminally ill Oregonians to end their lives through voluntary self-administration of lethal medications prescribed by physicians for that purpose. Patients must be Oregon residents, at least 18 years old, capable of making an informed choice, and diagnosed with a terminal illness expected to lead to death within six months. The patient must make two oral requests, separated by at least 15 days. The attending physician and a consultant must confirm the patient’s diagnosis, prognosis, and capacity for making an informed choice. If either physician believes the patient’s judgment may be impaired by psychological factors (such as depression) the patient must be referred for consultation. The attending physician must inform the patient about alternatives to the DWDA, including pain control, comfort care, and hospice. Physicians must report all prescriptions under the DWDA to the Department of Human Services. Oregon tracks prescriptions and deaths, and reports trends a public website.

From the inception of the DWDA until the end of 2007, 341 patients have died through use of the lethal medication (15.6 DWDA deaths per 10,000 deaths). Approximately 1/3 of the prescriptions are not used. The commonest rationale patients give for exercising the DWDA is the loss of autonomy from the illness (100%), loss of capacity to participate in the activities they care about (86%), and loss of dignity (86%). 30% fear that pain control will be inadequate.

I interviewed 20 people during my visit, including two of my favorite informants – taxi drivers. The unanimous view was that even though many do not agree with the DWDA, Oregon is at peace with the law. There is virtually no public controversy. The population appreciates having the choice the law provides, but doesn’t use it much.

Most importantly – the vigorous debate at the time of the two referenda led the contending parties to recognize their agreement that end of life care should be as available, patient-centered, and compassionate as possible. Oregon has made great strides in pain control, hospice availability and home care. Here is how USA Today contrasted end of life in Miami compared to Portland:

If you are dying in Miami, the last six months of your life might well look like this: You'll see doctors, mostly specialists, 46 times; spend more than six days in an intensive care unit and stand a 27% chance of dying in a hospital ICU. The tab for your doctor and hospital care will run just over $23,000.

But spend those last six months in Portland, Ore., and you'll go to the doctor 18 times, half of those visits with your primary care doctor, spend one day in intensive care and stand a 13% chance of dying in an ICU. You'll likely die at home, with the support of a hospice program. Total tab: slightly more than $14,000.

The central lesson I draw from my interviews and reading is that for the DWDA, democratic deliberation is working. Everyone I spoke to who was in Oregon during the time of the referenda emphasized the robustness and depth of the public debate. A wide swath of the Oregon public thought deeply about the issue of physician assisted suicide and discussed the topic with family and friends. The DWDA can be seen as the product of extensive deliberation and two public votes. The public has educated itself through the deliberative process and given marching orders to the state government through its votes. The state has taken a continuous quality improvement approach to the DWDA, as through the POLST program (Physicians Orders for Life Sustaining Treatment) that is spearheaded by the Oregon Health Sciences University Ethics Center.

The DWDA process shows democracy at its best. Whether or not other states follow Oregon's lead with regard to the DWDA itself - and I hope that in the next decade some do - they will profit from applying Oregon's educative approach to controversial issues in their own health systems.

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