By Kathryn L. Tucker, JD, Executive Director, End of Life Liberty Project, UCSF/UC Hastings Consortium on Law, Science & Health Policy
How did you get started in your work on end of life?
Early in my practice I was with the law firm, Perkins Coie, in Seattle, and began to do public interest work there. One of my first projects was to serve as outside counsel to a 1990 ballot measure campaign in Washington State to legalize aid in dying. The initiative came close but ultimately did not pass; the campaign reconfigured to become Compassion in Dying. I became their advisor. We worked to establish a right to aid in dying in the state of Washington as a matter of law through federal constitutional litigation in a case called Glucksberg v. Washington, and it wound its way through the federal courts to the US Supreme Court. The Ninth Circuit Court of Appeals found that there was such a right, but the US Supreme Court declined to find a right at the time and ruled that experimentation should happen “in the laboratory of the states.”
Can you define “aid in dying”?
Aid in dying is the most widely accepted term in the medical field for the practice of a physician prescribing medication, which can be ingest to achieve a peaceful death, to a mentally competent, terminally ill patient. Aid in dying catalyzes other improvements in end of life. When aid in dying is on the menu, the conversation opens up to other things like how to improve pain care, how patients receive information about the range of end of life choices, and how to ensure their choice is respected. It also galvanizes change across a range of practices. Clinicians take a continuing education in how to better treat pain and other symptoms, and referrals to hospice happen more often and earlier. It turns out that aid in dying is actually used by a small number of patients but galvanized changes that benefit all terminally ill patients.
Tell us about the End of Life Liberty Project.
The End of Life Liberty Project believes that expanding end of life options to include aid in dying is important. We have had measurable success. Six states now permit aid in dying - 5 via statute (Oregon, Washington, Vermont, California, and Colorado) and 1 (Montana) through a case, Baxter v. Montana.
We had a difficult experience recently in New Mexico where we lost in the high court. So, we are working to bring forth scholarship to advance the field, so that no other court makes the same mistake New Mexico did.
The End of Life Liberty Project works with top notch pro bono talent to bring additional expertise to our cases. We would love to expand our capacity to monitor the real-world problems and challenges that might be good for legal advocacy to protect and expand the rights of dying patients.
Why do people shy away from talking about end of life?
It has long been a cultural taboo to talk about dying. But there is an important cultural shift taking place. The Glucksberg case cracked open the door to address the fact that end of life care needs to be improved. It galvanized a cultural change and led to the great proliferation of publications addressing this issue, many of which gained popularity, such as Atul Gawande’s Being Mortal.
Why is it important to have end of life conversations?
Most laypeople don’t know that if you want your dying process and journey through terminal illness to be consistent with life that happened before, it requires a lot of planning. This thinking and planning should take place before significant decline. People should educate themselves about what options are available, and even when all options are understood and then selected, there may need to be some advocacy to ensure that those wishes are respected. Be prepared for that. Be prepared to handle the feedback from the provider team. Don’t wait to find out later that provider doesn’t offer an option the patient wants, such as aid in dying. Same with foregoing food and fluid. Look at these things when considering a retirement home. Asking questions about how open a provider or facility is to a range of options is essential. No one wants to find out that they don’t have the choice they want when they are in crisis.
Is there anything else you’d like to share?
I am generally optimistic that there will be more end of life choice and liberty. The trend is in that direction. As more states have an open practice around aid in dying and people see there are no adverse consequences, more momentum will build. But there also currents in our culture that are regressive so we need to stay alert, for example gay rights or racial minority rights. We can’t be complacent and need to keep advancing.