End-of-Life Choice, Palliative Care and Counseling

Posts TaggedWhatcom Hospice

Dying patients should have the right to make informed choices

Guest blog by Audrey Roll-Shapiro of Bellingham, Washington. Audrey and her family were not informed about Washington’s Death With Dignity Act until her husband Norman endured an agonizing death.  Their story first appeared in the Bellingham Herald.

My husband, Norman Shapiro, died from esophageal cancer at our home on April 21, 2010. He was 88 years old and was a revered father, stepfather, uncle, and member of the Bellingham community.

Norman was diagnosed with cancer in September of 2009. Although he tried chemotherapy and radiation, there was no question that his cancer would prevail. As his health deteriorated, we accepted that death was near, and Norman became a patient of Whatcom Hospice, which is owned by PeaceHealth, the Catholic health care system that also owns St. Joseph Hospital. He wanted to be kept as comfortable as possible, to have his pain managed, and to die with dignity.

Although Whatcom Hospice’s caring, attentive staff did what they could, Norman still had a bad death. It was clear to me, my daughter, and his niece, that he was suffering tremendously, and we were all traumatized by watching helplessly as he died a slow and agonizing death. Not once did any Whatcom Hospice staff mention that Norman had other options, such as palliative sedation (sedation to unconsciousness until death) or aid in dying under the Washington Death With Dignity Act (DWDA). I learned about the DWDA the day after Norman died.

Feeling betrayed, angry, and even more grieved, I wrote a letter to the director of Whatcom Hospice, and then met with him to find out why Norman and I were denied information about the DWDA. During our meeting, he said that the DWDA was “contrary to our values.” He also confirmed that it is Whatcom Hospice’s policy to not discuss the option of the DWDA, to not refer patients to other organizations that will, and to “not acknowledge the existence of Compassion & Choices of Washington” (877.222.2816, www.CompassionWA.org), the only organization in Washington that supports patients who want the option to use the law.

While Whatcom Hospice has the legal right to refuse to participate in a patient’s use of the DWDA, the law does not authorize withholding information necessary for patients to provide informed consent, one of the most important principles of medical practice. If a medical provider is opposed to the option, they have an ethical duty to refer patients to another source of information. In effect, Whatcom Hospice made Norman’s choice for him by failing to inform him of all of his end-of-life options.

Norman served in the U.S. Army Air Corps during World War II at Okinawa, Japan. When Whatcom Hospice imposed its religious and moral values on my husband, it trampled on the freedoms he fought to uphold.

Norman had a long-held belief in choice at the end of life; if he had been aware of the DWDA, I know he would have chosen it. My daughter and I believe it was wrong for PeaceHealth and Whatcom Hospice to put its faith-based, internal policies ahead of Norman’s right to make fully informed decisions about his end-of-life choices.

Audrey Roll is an expressionist artist who interprets the West with colorful painting and sculpture, often combining the two. Her pieces are in major collections including the Kennedy Center and the Kiplinger Collection in Washington D.C., and the Whitney West in Wyoming.