Letters: December 2014


Hugh Gallagher Supported ‘Death With Dignity’
NEW MOBILITY deserves credit for running an ad that invited its readers to sign a petition on the website of my organization, Compassion & Choices, to support death with dignity, even though some of its readers oppose it [“Assisted Suicide Ad Misleading”]. It’s especially praiseworthy because the piece explaining this decision acknowledged the NEW MOBILITY staff is divided on the issue.

Compassion & Choices abhors discrimination against people with disabilities based on cost or any other reason — by the insurance industry or any other entity. We defend the right of all adults to receive as much or as little medical treatment as they want.

As an ER and ICU nurse and physician assistant for 25 years, I strongly believe in the benefits of palliative care. In fact, studies show palliative care in Oregon improved greatly after the Death with Dignity Act I helped draft took effect. Unfortunately, palliation does not work for everyone. Five to 10 percent of dying patients get no relief from palliative care, according to a founder of the American Alliance of Cancer Pain Initiatives.

The Oregon Death with Dignity Act has multiple safeguards. For example, the law stipulates that “a person who coerces or exerts undue influence on a patient to request medication for the purpose of ending the patient’s life, or to destroy a rescission of such a request, is guilty of a Class A felony.” A Class A felony in Oregon carries a maximum sentence of 20 years in prison. This severe penalty is a strong deterrent. There’s little incentive to influence a person who is in the last phase of their dying. No one has been accused of breaking the law in its 17-year history.

Finally, I need to set the record straight about how my friend and former Compassion & Choices board member Hugh Gallagher, resigned from our board near the end of his life. As readers know, Hugh was a hero of the disability community, and he advocated for death with dignity to the day he died. His resignation letter stated: “It has been an honor to serve on the Compassion Board. I am proud of Compassion’s achievements, its great integrity and the respect it commands.”
Barbara Coombs Lee
President, Compassion & Choices

Assisted Suicide for Disabled Not Supported by Hugh Gallagher
Hugh Gregory Gallagher was a post-polio writer and former legislative aide to Sen. Bartlett of Alaska. He was responsible for bringing us the 1968 Architectural Barriers Act. He was also a beloved friend of mine from 1985 until his death in 2004 and arguably the leading proponent of physician assisted suicide in the disability community. This letter is to clarify what I know of circumstances surrounding Hugh’s resignation from the board of directors of the Oregon-based group, Compassion in Dying.

I was a staunch member of Not Dead Yet when Hugh decided he supported Physician Assisted Suicide. It was always a point of intense debate between us. Hugh believed that as long as the law was clearly proscribed for terminal people only, it was not a threat to people with disabilities.

When the Compassion In Dying board began discussing merging with the former Hemlock Society (which had renamed itself “End of Life Choices”), Hugh was quite troubled by the possible merger. The Hemlock Society openly supported the assisted suicides of people with disabilities who were not terminally ill. Finally he decided to resign from the Compassion in Dying board because of the impending merger and the move in the direction of physician assisted suicide for people not terminally ill. The groups officially merged in 2005, becoming Compassion & Choices.

His letter of resignation was classic Gallagher politeness and occurred before he became ill. He mentioned nothing about his distress with the group and basically said he had loved serving, but it was time to go. Moreover, he was quite fond of the group’s founder, Barbara Coombs Lee, and went to some length not to cause her distress.

I participated in many hours of discussion with Hugh prior to his resignation where he anguished about whether to stay on the Compassion In Dying board and influence it from within or make a statement by resigning. His decision to leave the board was because of his strong belief that merging with Hemlock would be dangerous to people with disabilities and others due to the expense of treatment and their vulnerability to pressure from family members.

When a terminal prognosis is all that divides those who get suicide prevention from those who get suicide assistance, no one should be surprised that assisted suicide laws pose a threat to people with disabilities.
Janine Bertram Kemp
Zigzag, Oregon

EDITOR: The following letter was sent to United Spinal Association and shared with NEW MOBILITY. The services described in the letter are available to anyone with a spinal cord injury or other neurological impairment.

Thanks for Vital Help
My daughter, Brittany Smith, suffered an SCI on August 1 of this year. Not long after that I found myself completely overwhelmed trying to navigate the process of getting her help, especially considering that she was uninsured at the time.

I was so fortunate to have found the unitedspinal.org website. I sent an email requesting an answer to a few questions, and received a prompt response from Bill Fertig. Bill sent me so much information that helped us. He also suggested that I contact my congressional representative for assistance with her SSDI and SSI benefits appointment, and they were able to get her appointment moved up by almost a month, which helped immensely. I then went on to request assistance from our Texas state representative, who had our appointment with the state’s Department of Assistive and Rehabilitative Services moved ahead as well.

He educated us about the levels of spinal cord injuries and sent a number of follow-up emails to ask how she was doing and offer any other assistance. We have been so fortunate to, with Bill’s guidance, have everything in place to meet Brittany’s needs. She is making a lot of progress in Baylor Institute of Rehabilitation, which is being funded by DARS.

I sent Bill a thank you email to try to express our gratitude, which I still don’t have the words to fully express. He responded that providing assistance is what your organization does, and pointed out that there is an entire team that helped with Brittany’s case, not just himself. He is knowledgeable, responsive and caring. I cannot begin to tell you how much he has helped us during this trying time, the most difficult thing we have ever experienced.

I wish there were more people in the world like him, as well as more organizations like United Spinal Association.
Rena and Wyatt Smith
Grapevine, Texas

Wonderful Support
Thank you so much for the wonderful article about my nephew, Will Lachenauer [“Race of Truth,” October 2014]. He is amazing! He has a wonderful support system in family and friends. You could do an article a week on his friends in the paracycling community and never run out of the most incredible stories about the strongest and bravest people in the world. Each story is more inspiring than the last and each person is constantly paying it forward. People like Oz Sanchez and Muffy Davis. To me they are all outstanding. So little attention is paid to the paracycling events and Paralympics. Again thank you for spreading the word.
Gretchen Schneider
Webster, New York


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