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Interview with Shanaaz Gokool — CEO, Dying With Dignity

2022-12-16

Author(s): Scott Douglas Jacobsen

Publication (Outlet/Website): Medium (Humanist Voices)

Publication Date (yyyy/mm/dd): 2018/08/13

Scott Douglas Jacobsen: With respect to human rights activism and physician-assisted death access, for 18- to 35-year-olds, how can they become involved?

Shanaaz Gokool: Something I should have said in the previous interview, but I will say now is that we prefer the term either medical assistance in dying or assistance in dying. I will tell you why. Not just because “suicide” is inflammatory, but in Canada assistance in dying is a combination of two separate things.

Voluntary euthanasia where the IV administered medication will end your life or you can get a written prescription to take oral meds to take your own life. When you combine both, you get assisted dying because it is not just euthanasia in Canada — and it is not just assisted suicide. It is both.

As to your question, I like to clarify that for people. It is not factually correct to say one and not the other. That’s why assisted dying is a better term because it is neutral language and reflects what your options actually are and what your rights are.

You are entitled to either of those options. In terms of how people can get involved, many people are seeing loved ones that are dying. It is not necessarily assisted dying. It is not necessarily for people in specific age categories.

People who are older disproportionately die more than others just due to age. With that said, I think that we have started in Canada an independent witness program because in order to make a formal MAiD request.

You need two independent witnesses to witness and sign your request form. That is across the country, except in Quebec. They have different legislation. They don’t require the witness [Laughing]. But everywhere else, what we have found, it can be difficult to find independent witnesses for a variety of reasons.

Some want privacy. Some don’t know anybody. Sometimes, facilities are telling people and interpreting the legislation too restrictively, so that no one in the facility, if they are in long-term hospice or long-term care, can be an independent witness.

That isn’t true. As long as you are not providing direct personal healthcare and don’t own the facility, then you can be an independent witness, you cannot go forward with the request without witnesses.

Through Dying With Dignity Canada, we have about 150 volunteers…

Jacobsen: Wow.

Gokool: …signed up to be witnesses all across the country. We continue to look for more because we can’t always meet the demand. We get requests from doctors, from health authorities, from hospitals, from hospices. The program is very well-known.

It is a tangible thing for people to do. We’ve got an agreement and a guide and training. It is usually a buddy system to get people to the point where they feel comfortable going out and doing this.

It is an incredibly profound volunteer type of work, but, at the end of day, we don’t like the witnessing part of it. It is supposed to be a safeguard, but it is not a safeguard. But as long as it is in the legislation and as long as it creates a problem for access, then we will continue to support and grow that program. So, people don’t have that problem as another barrier to access.

That is probably the most tangible way that people can go and be involved with our organization.

We do advanced care planning training throughout the country. A number of our volunteers help coordinate events and do the training themselves.

We have actions on our website right now. The big one that we’re focused on is forced transfers for medical assistance in dying. That is for when you are in the facility, usually a publicly funded facility where they have been able to opt out from providing on-site. We have a petition. People can write letters to their premiers and health ministers in their province and territory to let them know that forced transfers are cruel.

That they can cause so much suffering, physical and psychological — emotional — suffering. They are wasteful. They can be very wasteful. They add a certain amount of cost to something. We’re talking about people who are very physically compromised. They shouldn’t have to be forced out of one facility because they are trying to access their right to an assisted death.

There are petition signing and letter writing that people can do. I think the most important thing that people can do. You don’t have to go to our website to do this, but people certainly can. You can have the conversation with friends and family and colleagues.

We have something called Digni-tea to help people have conversations around death and dying. They are not all about assisted dying, right? Often, they are about advanced care planning and what that looks like and making sure you have someone who will be your alternative decision-maker. So, the decision-maker, should you no longer be able to articulate your medical wishes or treatments or to stop treatment.

I think that the Carter Decision. I like to tell people that it unleashed a glacier.

When you are in a glacier’s natural environment, you can’t often see how fast their moving in the water, then one shows up on the coast of Newfoundland. That is what I think the Carter Decision has done for us in this country.

It has given us safe spaces to have all kinds of conversations around end of life care. There are all sorts of stories in the news about these issues and those become really important and helpful segues into having those difficult conversations.

I remember in the Fall of 2013. I didn’t even know Dying With Dignity Canada existed as an organization. I was listening on the CBC to the story of Don Low, who was a well-known doctor here in Toronto especially during the SARS outbreak. He was pleading for assisted dying as he was dying with his brain tumor, having those conversations with my brothers at those times. Because it was in the news. There will always be a story somewhere.

That having people start engaging those conversation is really critical to helping us all prepare for the inevitable. And, making sure that our loved ones are prepared. I sat down about a year and a half ago, maybe 2 years, with my mom and sister. We went through my mom’s advanced care plan. I didn’t know before I worked here to be honest. I helped to ensure my sister, who will be her substitute decision-maker, has a clear sense of what my mother wants.

She didn’t before, but she is very grateful for that, even though she is my mom’s main caregiver right now. I think that that doesn’t seem like a way to get involved, but it is probably one of the most important things people can do.

If you have an individual or collectives en masse having these conversations, that is a good thing for them and their loved ones. It is a good thing for the cause of making sure that people can have dignity in their death.

License

In-Sight Publishing by Scott Douglas Jacobsen is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License. Based on a work at www.in-sightpublishing.com.

Copyright

© Scott Douglas Jacobsen and In-Sight Publishing 2012-Present. Unauthorized use and/or duplication of this material without express and written permission from this site’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Scott Douglas Jacobsen and In-Sight Publishing with appropriate and specific direction to the original content. All interviewees and authors co-copyright their material and may disseminate for their independent purposes.

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