Soapbox

Hospice care isn’t enough for all the dying

Debbie Ziegler, mother of Brittany Maynard, speaks to the media in September after the passage of legislation to allow terminally ill patients to legally end their lives.
Debbie Ziegler, mother of Brittany Maynard, speaks to the media in September after the passage of legislation to allow terminally ill patients to legally end their lives. The Associated Press

People who opposed laws in California, Oregon, Washington, Montana and Vermont authorizing medical aid in dying for terminally ill adults often claim there are better alternatives to relieve suffering.

I was one of them. In fact, I served as chief executive officer and chief spokesperson of the Oregon Hospice Association before and after the implementation in 1998 of the nation’s first medical aid-in-dying law. I voted against the referendum because I believed it was unnecessary if terminally ill Oregonians had access to high-quality hospice and palliative care.

However, I came to realize that it was arrogant of me to believe that hospice and palliative care professionals could meet all the needs of the dying.

Oregon is consistently rated among the best states for providing hospice and palliative care. Yet, even with the best care, some patients still suffer intolerably and want the option to take prescription medication to die painlessly, peacefully and quickly in their sleep.

Other medical professionals also are realizing that terminally ill adults should have access to a full range of end-of-life options. In May, the California Medical Association dropped its 28-year-long opposition to medical aid in dying, acknowledging that “despite the remarkable medical breakthroughs we’ve made and the world-class hospice or palliative care we can provide, it isn’t always enough.”

Many opponents claim that palliative sedation (sedating the patient into coma and withholding nutrition and fluids until death occurs in days or weeks) effectively eases the suffering of patients when other means fail to do so. However, it is an unacceptable option for most terminally ill adults whose primary concerns are losing autonomy, quality of life and their dignity.

Today, I am convinced that medical aid in dying can be, and is, practiced responsibly in Oregon. That explains why Oregon’s law is the model for subsequent laws or legislation in 30 states and the District of Columbia, including California’s law that takes effect next year.

Until I retired from the Oregon Hospice Association in 2008, I met with front-line hospice workers regularly to discuss their experiences. Whether they supported or opposed medical aid in dying, they unanimously agreed that conversations about death and dying improved significantly after the law’s implementation. It literally put the topic on the table.

Evidence shows that these conversations are far more likely to reassure a dying person rather than to direct them toward making a request for medical aid in dying. The vast majority of people who raise the possibility of medical aid in dying with their doctor will not go on to make a formal request. When a physician can respond openly, the likelihood of successfully addressing fears or reasons behind the request is much greater than when patients are deterred by the law from expressing their concerns and wishes.

While some health care professionals expressed fierce opposition to medical aid in dying prior to the law changing in Oregon, since then, those voices have softened, in the face of indisputable evidence, and no representative medical organization has called for the law to be repealed.

Ann Jackson is former CEO of the Oregon Hospice Association and co-wrote the chapter about hospice and palliative care in “The Oregon Death with Dignity Act: A Guidebook for Health Care Professionals.” She can be contacted at Jackson@ann-jackson.com.

  Comments