First of all, I would like to thank you for the opportunity to appear before this council. I do appreciate the fact that I can speak.
My name is Linda Jarrett. I am 67 years old. I am a wife, mother, grandmother, mother-in-law obviously, and 17 years ago I was diagnosed with secondary progressive multiple sclerosis. At the time, I truly felt blessed, in a way, that I was diagnosed at such a late age of 50. Unlike so many people diagnosed with MS in their early 20s and 30s, I have had a chance to live a very active life. I've had a wonderful career as a teacher and have been able to actively take part in the raising of our two children.
I am blessed in that way, but I am also cursed in that multiple sclerosis is a very insidious disease. In my case, with secondary progressive MS, there has been no cause found for MS, and a cure certainly has not been indicated in the foreseeable future, especially for somebody with my version of MS.
As a result of that diagnosis 17 years ago, in the last five or six years I started thinking about what my life was going to be like. I personally do not want to spend the final years of my life in a long-term care facility, no matter how lovely such a place might be, being taken care of 24-7. That's when I started looking into what my options could be.
Now, back six or seven years ago, the options were that I could hasten my own death while I was still physically capable of doing so, and not implicating any members of my family or friends. With the introduction of the concept of physician-assisted dying, and with that incredible announcement last February, I suddenly realized that I could still love the life I have, knowing that there could be a solution to avoid the end of life I don't want.
In any case, that's just a little bit of background as to where I am now, today, presenting to you as a member of the disability advisory council to Dying With Dignity Canada. We are a group of individuals with disabilities that compromise our ability to take part in the normal routines of daily life. Members of our disability advisory council include social activist Margaret Birrell; a former palliative care and public health doctor, Dr. Greg Robinson; and a former president of the Canadian National Institute for the Blind, Jim Sanders.
In 2014, Dying With Dignity Canada commissioned an Ipsos Reid poll that included a statistically significant sample of people with disabilities. These people were those who answered the following question: Are you permanently or severely disabled such that you cannot take part in the basic activities of daily living without assistance?
An amazing 84% of those people with disabilities answered this question: As long as there are strong safeguards in place, how much do you agree or disagree that a doctor should be able to help someone end their life if the person is a competent adult who is terminally ill, suffering unbearably and repeatedly asks for assistance to die?
I can't emphasize enough that it was 84% of the disabled participants in that survey that agreed or strongly agreed with the right to physician-assisted dying. That poll was valid plus or minus 11.5%. Another poll done in the U.K. by YouGov had a significantly larger range of individuals with disabilities being polled, and 79% of those with disabilities support or strongly support the right to physician-assisted dying. They answered this question positively: “Whether or not you would want the choice for yourself, to what extent do you support or oppose the legislation of assisted dying for adults of sound mind with a terminal illness?”
Our disability advisory council helped to inform and supports the seven principles for legislation outlined by Dying With Dignity Canada, and I do hope that handout was provided to you ahead of time. I am going to refer to a couple of points on it, but the handouts, which were sent ahead of today's meeting, you can certainly refer to later.
I'd like to flag the second principle, which concerns “advance consent”. The members of our council believe that as with other major life-ending decisions, we should have the ability to make our decisions known now when we are competent and hopefully have them carried out later when possibly we will not be. I myself have a “do not resuscitate” order in place because I know full well that I do not wish to be resuscitated should some life-ending event happen to me. What if I were to have a stroke and be completely paralysed and unable to communicate? In that situation, I know that I would want assistance to die, and I believe I should be able to make that request now while I'm competent and have it carried out later when perhaps I will not be.
To ensure that physician-assisted dying is provided only to patients who truly want it, we support additional procedures that are not currently part of end-of-life medical care. We do this with caution, knowing that any additional procedures can also sometimes become a barrier to access. For example, the two procedures that we endorse are that two physicians verify that there has been free and informed consent for physician-assisted dying and that every case be reviewed after the patient has died and aggregate data be compiled and made available to the public.
As individuals who happen to live with disabilities, we are aware that resources and support are sometimes lacking, and accordingly in our fleshed-out policy on physician-assisted dying, we include a statement noting that all people, including those with disabilities, should have the support and resources necessary to live their life to its fullest capacity.
We accept that a person can be situationally vulnerable because of factors that do not directly relate to their disabilities or to their disease. Factors such as isolation and financial distress are sometimes more likely to be encountered by people with disabilities. Accordingly we believe that physicians should be trained to assess situational vulnerabilities not just for physician-assisted dying but for all end-of-life decisions.
The members of our disability advisory council strongly feel that the law needs to strike a balance to protect vulnerable people from having an assisted death they don't really want and, from my point of view and our council's point of view, to ensure access to assisted death for those who do have an enduring wish for it.
To this end, we propose two further key principles. The first is that doctors, while having the right not to administer or prescribe life-ending medication, must be willing to provide information and transfer the care of patients who seek an assisted death, so that patients are not abandoned. We don't want someone who is desperately ill, with great pain, being given a website or a phone number or the Yellow Pages and being told to find another doctor.
We further believe that tax-funded institutions, whether they be hospitals, hospices, or long-term care facilities, must provide assisted dying on their premises to patients who request it. For example, some of our members in British Columbia are concerned that they may need emergency medical care and perhaps will be transferred to one of the Catholic hospitals in that province. They don't want to give up their right to an assisted death just because the hospital they have been transferred to has a historical association with a particular religious viewpoint on assisted dying.
It is notable that some of the most prominent proponents of physician-assisted dying are the disabled: Kay Carter, Sue Rodriguez, Gloria Taylor, and Joe Arvay, the lead counsel for the plaintiffs before the Supreme Court just over a year ago, who gave us the right—possibly—to physician-assisted dying. He did this from his wheelchair.
Our diseases and disabilities have robbed us of much, and I ask you, do not add to this burden by compromising our choices and our autonomy. I will repeat again that 85% of people with disabilities said, in a valid, accepted poll, that they would strongly support the idea of physician-assisted dying.
Please do not allow us to be represented as opposing this compassionate and humane choice. Again, I emphasize that it is a choice. No one is asking to be put to death against their will, but please allow those of us in the disabled community the right to access our choice for physician-assisted dying.
Thank you so much for listening to my babbling.