Death with Dignity Event Focuses on 'Building Bridges' With Hospice

Most patients who die under the law are in hospice care – but some in the hospice movement are still uncomfortable with the law
The Lund Report

 

October 10, 2013 – At Wednesday's annual fundraising luncheon, Compassion & Choices of Oregon's new state director, Kat West, on board for just five weeks, announced the organization's plan for the next five years” to recruit more doctors, develop champions within healthcare systems, develop a robust outreach team and make sure everyone has the end-of-life experience they want.

The organization advocates for the full range of end-of-life planning from two angles – advocating for protection of Oregon's landmark Death with Dignity Act, voted in by a statewide referendum in late 1997 – and referring families and providers to information about end-of-life planning, including how to access the lethal prescription authorized by the act.

West, a lawyer who served as Multnomah County's director of sustainability and for the Environmental Protection agency before that, described herself as a “hard-bitten, type-A legislative attorney” and said she became impassioned about end-of-life planning after losing her mother three years ago to cancer.

“Going on that journey three years ago with my mother was a transformative experience,” West said. She added that while her mother did not choose to use the prescription authorized by the act, she and the rest of the family were relieved to know it was there.

“The simple fact that the law existed lifted a huge burden of fear from my mom and her family,” West said.

Keynote speaker Deborah Whiting Jaques, CEO of the Oregon Hospice Association, which represents 54 licensed hospices throughout the state, said she was happy to learn that the theme of the fundraising luncheon was “Building Bridges,” noting that 97 percent of patients who have used the Death with Dignity Act are in hospice. Many of the 54 licensed hospice agencies in the state work closely with Compassion & Choices to ensure families get good advice about end-of-life planning, she said.

Still, the relationship has not always been so comfortable, she said. When Jaques started working in hospice care, many within the hospice movement were unfamiliar with Death with Dignity or were uncomfortable with it. Jaques said that changed for her when a chaplain came to her office and told her a patient had taken life-ending medication and was non-responsive, but still alive. At that point, Jaques said she realized staff needed to learn more about the act and brought in some volunteers from Compassion & Choices for a staff meeting.

Later, one staff member told her he didn't believe in Death with Dignity and didn't think Compassion & Choices staff should have been present for a meeting that all staff were required to attend. “I asked him, 'Did you do everything you could to help this man?'” Jaques said, and the staff member agreed that despite best efforts on the part of staff, the patient was still suffering. She added that hospice staff whose patients choose to get death with dignity prescriptions have the option of not working, and being replaced by other staff – a “conscientious objection offer” – at the time the patient chooses to die.

“I want to be quite clear: the Oregon Hospice Association does not advocate in support of Death with Dignity or in opposition. We advocate for patients to do what they want,” Jaques said.

Even hospice and palliative care advocates in other states sometimes come up to Jacques’ at conferences and tell her it must be difficult to do her job in a death with dignity state. That, she said, is because one of the tenets of hospice care is to neither hasten nor delay death, seemingly incongruous with the act – but patients can attempt treatments that may prolong their lives or decline treatments that won't work for them.

She closed by saying her daughter and son-in-law don't believe in television or own one, and as a result their one-year-old son has had very little exposure to TV. Recently, though, Jaques' grandson was over at her house and, because he is teething, was upset and couldn't be consoled. Jaques quietly took him upstairs and turned the TV to a children's show on OPB, and he calmed down immediately – so now her daughter and son-in-law have changed their tune. Similarly, a friend and colleague of Jaques who was a national advocate passed away recently in an intensive care unit, and while hospice advocates often talk about avoiding hospital deaths, Jaques said her friend had a peaceful death of the kind he would have wanted.

“Experience informs our personal and professional lives,” Jaques said.

Following her presentation, Compassion & Choices President Barbara Coombs Lee presented Volunteer of the Year Awards to medical director emeritus Dr. Nancy Crumpacker and medical directors Dr. Peter Lyon and Dr. Peter Reagan.

Finally, Kit Abel Hawkins talked about her father, who found out last December that his life was near its end and obtained a prescription, but died shortly before the day he had told his family he would take it. (According to the state's annual Death with Dignity report, published every year in January, in 2012 115 lethal prescriptions were written and 77 people died after taking the prescription.) He was able to spend time talking with each member of his family individually, and was mentally astute and erudite up until the day of his death, she said.
“What good fortune for my father to find such fine people to help him in his hour of need,” Hawkins said.

Christen McCurdy can be reached at christen@thelundreport.org.

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