End of Life Washington is a new name for an old organization. Sprouting 30 years ago as the Hemlock Society Chapter of Washington, our family tree has branched out over the years to include an impressive number of end-of-life service and activist organizations. In 2015, Compassion & Choices of Washington rebranded as End of Life Washington in an effort to have our name clearly speak to our purpose: support and choice at the end of life.
The heart of our mission is our stewardship of Washington’s Death with Dignity Act. Since the law came into effect in 2009, the Department of Health has recorded 843 deaths involving the ingestion of life-ending medication, from 36 that first year to 192 in 2016, documenting steady yet modest increases each year. End of Life Washington volunteer client advisors actively supported over 90 percent of those cases.
Even with the law in place, Death with Dignity can be challenging for those seeking to access it. In order to qualify, a person must be 18 years or older, a resident of Washington State, and have a prognosis of six months or less to live, as verified by two physicians. In addition, the patient must be deemed mentally competent to make an informed decision. Should either physician have concerns about competency, the patient must submit to an evaluation administered by a psychologist or psychiatrist. Finally, the patient must be capable of self-administering the life-ending medication, either by swallowing it or injecting it into a feeding tube.
The requirement of a first request for Death with Dignity, followed by a 15-day waiting period before a second request, assures that patients seeking life-ending medication cannot rush into a hasty, irreversible decision. These stipulations mandate that terminally ill patients begin the process earlier rather than later in order to clear the hurdles to physician aid in dying put in place by the law. Interestingly, about a third of the patients who obtain a prescription for life-ending medication never fill it—but simply knowing that they have access to the medication proves palliative, affording them agency at end of life.
For those patients who do avail themselves of Washington’s Death with Dignity Act, End of Life Washington provides assistance every step of the way. Because the law allows healthcare providers and facilities to opt out, many patients struggle to find physicians who will write a prescription or pharmacies that will fill it. Our volunteer client advisers help patients navigate this terrain, guiding the process from initial inquiry to ingestion of life-ending medication. We are the only organization in the nation that consistently provides this support at no cost.
Over the past 30 years, our efforts have remained admirably focused. Besides leading the charge that placed Initiative 1000, Washington State’s Death with Dignity Act, on the ballot in 2008 (when it passed by a large margin), we have participated in legislative efforts to expand choice for terminally ill citizens. Our forerunner, Compassion in Dying, developed and filed two federal lawsuits to assert that a mentally competent, terminally ill patient had the right—protected by the Constitution’s guarantee of liberty, privacy, and equal protection—to choose aid in dying. In both cases the U.S. Supreme Court declined to find constitutional protection of aid in dying and referred the issue to the states, where it remains to this day.
We lobbied the Washington State legislature about the Safe Medicine Return Bill and the Pain Management Bill, and encouraged the retaining of the Hospice Medicaid Bill. We currently support the Protecting Patient Care Act, which will prohibit healthcare entities from interfering with a medical provider’s effort to deliver accurate information and service.
Advance planning is another area where we have led the way. In 2005 we created a new, more detailed version of the Durable Power of Attorney for Health Care and Healthcare Directive or Living Will, combining these two documents. Many Washington elder law attorneys claim it as their advance-planning document of choice because of its comprehensive attention to detail. In 2012 we crafted our Alzheimer’s Disease/Dementia Mental Health Directive, which enables people newly diagnosed with these diseases to document their wishes—while they are still able—about nonmedical issues regarding future care. This is the only document of its kind in the nation. In 2017, we created My Instructions for Oral Feeding and Drinking, which seeks to allow people with dementia to proactively eschew feeding and hydration by others, should they find themselves in a care facility.
As executive director of End of Life Washington, my mission is straightforward: I want every Washington resident to have a robust, up-to-date advance directive for health care and a full awareness of our legal right to Death with Dignity. I hope to never again hear, “If I ever come down with that disease, I plan to move to Oregon!”
As an informed patient, ask your physician if she will support you should you be diagnosed with a terminal illness and wish to use the Death with Dignity Act. Washington doctors join the ranks of those who actively participate because, when beloved patients ask them to help, they find it difficult to refuse. Finally, help us to eradicate the use of the “s” word: suicide. Physician aid in dying is not suicide, which suggests the premature ending of a life, often through violent or solitary acts.
Folks who use Death with Dignity would live on if they could. They are already dying, and instead of following the difficult trajectory of their disease, they are choosing the manner and the hour of their deaths. Granted, Death with Dignity is not for everyone, but for those who need it, it provides a significant choice at a time in life when choices are sorely limited. I am reminded of the words of a terminally ill patient I met when I first began my work with End of Life: “I don’t even know you, but I love you. You’re the first person to offer me any real help.”
Sally McLaughlin joined the staff of End of Life Washington in 2015 as the organization’s first community education director and became the executive director in 2016. She promotes education on advance planning for health care and expanding choice at the end of life throughout the state. She can be reached at firstname.lastname@example.org.