In this episode of Euthanasia & Disability, Amy Hasbrouck and Christian Debray discuss:
- The language of legal complaint evokes pity and fear;
- An assisted suicide ballot initiative approved in Colorado
Please note that this text is only a script and that our webcast contains additional commentary.
LANGUAGE OF LEGAL COMPLAINT EVOKES PITY AND FEAR
- Two weeks after Canada’s assisted suicide and euthanasia bill C-14 became law in June, a complaint was filed in British Columbia to challenge parts of the law.
- The plaintiff, Julia Lamb, is a 25-year-old woman with spinal muscular atrophy, type 2. In her suit, she says two parts of the definition of disability under bill C-14 unfairly limit her access to assisted suicide and euthanasia, and should be set aside. These are:
- requiring that the person be in an advanced state of irreversible decline in capability, and
- requiring that natural death be “reasonably foreseeable”
- The complaint uses loaded language and images to manipulate the emotions of the reader into believing that Ms. Lamb’s quality of life is both poor and precarious. It suggests that her disability is a fate almost worse than death, and that any deterioration in her condition would tip the scales into that dreaded territory. There is no recognition that most people, with aides and support, can adjust to changes in their health status.
- Here are a few excerpts from the complaint to give a sense of how it’s written.
- “At age seven, Julia underwent surgery for her scoliosis, which was causing one of her lungs to collapse. The surgery entailed applying hooks and screws to her spine to anchor two long rods.” (para 11)
- “Despite her increasing disability, Julia moved out of her parents’ home to live as independently as possible.” (para 14)
- “She currently is not capable of any daily living activities and requires assistance for bathing, dressing, toileting and preparing meals.” (para 15)
- “Julia wakes up to five times per night from discomfort and pain and requires assistance to adjust her positioning.” (para 16)
- “She is sensitive to the moods of other people and she finds it exhausting to be so frequently in the company of other people.” (para 17)
- “Julia is unable to move or bend her legs and is unable to bend her hips. She has severe weakness in her arms and legs, although she retains a limited range of movement in her arms.” (para 18)
- “She cannot brush her hair because she cannot reach over her head,” (para 21)
- “Julia experiences frequent pain from muscle contractures in her hips, shoulders, elbows, wrists and ankles… Physiotherapy has provided her with temporary gains in mobility, but has not provided lasting relief. She also occasionally experiences severe back pain as a result of her scoliosis surgery.” (para 22)
- “She feels as though her body is starting to fail her, which makes it difficult for her to feel as though she can forge ahead in life.” (para 24)
- “Her grasp is not as strong as it used to be. She can no longer reach as far with her arms.” (para 25)
- “Her lung capacity has decreased and is currently only at 30 percent … She lives with the constant fear that a mild cold could lead to pneumonia and a permanent further decrease in lung function.” (para 26)
- “For the past year she has been sleeping every night with a BiPAP, a machine that assists with breathing.” (para 27)
- “she now sometimes finds herself exhausted after writing a single email.” (para 28)
- “Julia may require a permanent tracheotomy in the future. Julia worries that a tracheotomy may negatively impact her ability to communicate orally.” (para 30)
- “While ventilators may be portable, they are cumbersome and Julia dreads the further restriction of her mobility.” (para 31)
- “She fears losing the ability to drive her wheelchair and write and type because she loves to express herself through writing.” (para 32)
- “She worries about requiring tube feeding.” (para 33)
- “She feels a shadow looming over her. Julia fears that the worst possible version of her future – one where she suffers increased pain and discomfort, has difficulty breathing sufficiently well on her own, loses her independence and loses her ability to express herself – could come upon her at any time.” (para 34)
- The complaint uses excessively graphic descriptions designed to elicit fear and pity. “The surgery entailed applying hooks and screws to her spine to anchor two long rods.”
- To say Ms. Lamb lived “as independently as possible” implies an inherently unsatisfactory outcome.
- The complaint exaggerates her disabilities, e.g. “not capable of any daily living activities”
- The complaint makes reference to poorly-managed pain that could be remedied.
- There are references to attendant management problems that can be solved with skills building. (“sensitive to the moods of others”)
- On several occasions, the complaint refers to issues related to grief and adjustment that could be alleviated through peer counseling and mentoring. (Fears the worst possible outcome)
- The complaint only describes the negatives in great detail and dwells on her fear of what may happen.
- Use of assistive technology is portrayed in a negative light. (use of BiPAP, “ventilators are cumbersome”)
- Some of the fears expressed are based on ignorance (“tracheotomy may negatively impact her ability to communicate orally,” “She fears losing the ability to drive her wheelchair and write”).
- Fears of the worst possible version of events should not guide public policy for everyone.
- We contacted Diane Coleman, President and CEO of Not Dead Yet for her response. She described her (similar) situation, but in a very different way.
- “When I was six, doctors diagnosed me with muscular dystrophy. By the time I was nine, doctors decided that was wrong and re-diagnosed me as having spinal muscular atrophy type 2. I have used a motorized wheelchair since the age of 11. I cannot walk or stand at all.
- I had that diagnosis until I was in my late 50s when they gave me one of the new DNA tests and discovered that I don’t have spinal muscular atrophy. But they said it doesn’t matter exactly what neuromuscular disability I have, because the treatment would be the same in any case. So now they call it congenital myopathy. I am currently age 63.
- “I had curvature of the spine beginning in childhood which required me to wear a large and uncomfortable metal brace until I stopped growing. I had spinal fusion surgery including the insertion of a steel rod and screws in my back at the age of 19 which required me to live for one year in a convalescent hospital without sitting up at all. I completed about 27 hours of college coursework by correspondence during that year. Nowadays, they’re able to do such surgeries earlier in life with far fewer restrictions.
- “I have the lifelong osteoporosis that typically accompanies long-term use of a wheelchair for mobility. I use a variety of strategies to deal with physical pain. My lung capacity is 30%. For about 17 years I have used a BiPAP for breathing support at night. For the last year and a half I also use the BiPAP for most of the day, only breathing on my own about three or four hours a day.
- “I am still able to swallow but have some difficulty and must be careful in doing so, and I anticipate that I may need a feeding tube in the future. I know many individuals with feeding tubes and tracheostomies and I am generally familiar with how to manage these devices and continue living a satisfying life.
- “I’m sure that I could go on and on about specific things I can’t do because of my disability, and I’m sure that my lawyers would require me to do so if I were seeking assistance for euthanasia, because the general public, including judges, are ignorant about living with disability and such descriptions bring up feelings of pity at best and horror at worst. But, frankly, such an exercise seems like whining and manipulation.
- “I live with my adorable husband and disabled cat in a house in the suburbs of Rochester, New York. I work a full-time job, which primarily consists of work at a home office desk involving email, reading, document analysis and writing, and similar tasks, as well as telephone calls and meetings.
- I used to travel extensively, primarily for work related activities and conferences, but have decided that the stress of travel has become too significant to be worthwhile. Several times a year, I present at conferences using Skype. I dictated most of this text, which is often faster than two-finger typing.
- “One last thing. As we can see from the death of 14-year-old Jerika Bolen in Wisconsin last month, who had spinal muscular atrophy and used a BiPAP for 12 hours nightly, Julia already has the option of killing herself, simply by refusing her BiPAP and entering hospice. As with young Jerika, hospice will gladly increase her narcotics dosage to help suppress breathing, while at the same time sedating her and providing her with no food or fluids until she dies comfortably in her sleep. Julia’s court case is wholly unnecessary. She already has a streamlined path to death.”
ASSISTED SUICIDE BALLOT INITIATIVE APPROVED IN COLORADO
- In Colorado, a ballot initiative allowing physician assisted suicide passed with 65% of the vote.
- The initiative creates a law similar to those in Oregon and Washington. A person must be at least 18 years old and competent to make medical decisions for themselves. They must have a terminal illness, defined as having six months or less to live, as determined by two doctors. The person can receive a prescription for a lethal dose of drugs, which can then be taken in the home.
