Introduction

Webcast Archive: No Free Choice – Jacques Campeau

This week we look at the reasons Jacques Campeau's choice to die was not free, and we compare two pandemic policies for people with disabilities.

Webcast Archive: No Free Choice – Jacques Campeau

During the COVID-19 pandemic, we will not present our webcast, due to technical problems caused by heavy internet usage. However we are providing the text as a bulletin to offer up-to-date information about assisted suicide, euthanasia and ending-of-life practices for the disability community.

NO FREE CHOICE: JACQUES CAMPEAU

  • In July of 2019 several Québec media outlets reported on the suicide death of Jacques Campeau, who had Multiple Sclerosis.   The stories focused on his family’s anger over the fact that he was denied euthanasia several times because he was not at the “end of life;” the family brought his death to the attention of the media in order to put pressure on politicians and the courts to loosen this eligibility criteria.  But details from the articles show that Mr. Campeau really needed help to live, not to die. 
  • According to his daughters, Mr. Campeau was “increasingly despondent and withdrawn” and his wife said he had talked about suicide for a year. “I would come home every evening afraid he had done it.” Depression is a well-known problem associated with MS, both as a reaction to flare-ups, and as part of the disease itself.  It can be made worse by pain and fatigue that often come with MS.  If Mr. Campeau was not being treated for depression, he was not getting the care he needed.
  • The articles not only showed that Mr. Campeau had low self-esteem, but also reinforced those beliefs about people living with MS and other chronic diseases.  According to the Journal de Montréal, he told his family that he was nothing more than a digestive tract. The reporter described his « suffering » by saying he used a wheelchair and incontinence products, and “hadn’t seen the light of day since November.” His daughter said he had “no quality of life,” and that he was a “prisoner of his body.”  Rather than asking if Mr. Campeau had received peer support or “dignity therapy” to deal with his existential distress, the journalists repeated negative stereotypes of life with a disability as a fate worse than death.  
  • Media reports suggested Mr. Campeau was losing autonomy, but there was no mention of in-home assistance.  His daughter told of receiving a call at work “telling her [Mr. Campeau] had fallen at home and had been lying on the floor for two hours, waiting to call when he knew she was on break.” 
  • Mr. Campeau’s family expressed disappointment over not getting a chance to say good-bye.  “We would have preferred to have a last moment with him … to have a dinner with him, tell him that we love him. We would have liked to talk to him before he did this.” They believe a planned death would have met their need for closure.
  • The only other sources cited by the journalists were spokespeople for “Dying with Dignity” and a pro-euthanasia doctor. The reporters included a link to the family’s petition to change the “end-of-life” eligibility criterion. The articles did not quote people living with MS or experts in palliative care or suicide prevention.  The Journal de Montréal included information on how to obtain MAiD and the suicide prevention telephone number. 
  • The tragedy here is not that Mr. Campeau didn’t die by euthanasia, or even that he committed suicide.  The tragedy is that those who surrounded him seemed to think that MS, a chronic illness that includes flare-up and remission, was a terminal illness, and that his life was not worth living because of his disability. The tragedy lies in the fact that he did not have the services and supports he needed to adapt to his changing condition, feel good about himself, maintain his independence, and get peer counseling and suicide prevention services that could have improved the quality of his life, and ultimately saved it. 

TWO APPROACHES TO PANDEMIC POLICY FOR PEOPLE WITH DISABILITIES

  • The United Nations and Canada’s Public Health agency both recently issued position statements on protecting old, ill and disabled people during the COVID-19 pandemic. Though they may have similar goals, the two documents are very different.
  • The U.N. document is divided into eight sections, relating to the impact of the pandemic on health care, people in institutions, community living, income and employment, education, domestic violence, homeless people, and prisoners with disabilities.  Each section lays out the problem, suggests some “promising practices” in different countries, recommends specific actions to be taken, and offers some resources.  The policy recommendations include:
    • Prohibit the denial of medical care on the basis of disability and identify and remove barriers to treatment;
    • Discharge and release persons with disabilities from institutions and promptly ensure provision of support in the community;
    • Ensure that personal support workers are exempted from stay-at-home restrictions;
    • Promote and coordinate the development of community support networks;
    • Increase existing disability benefits, including through advancing payments to cover extra costs.;
    • Ensure access to Internet for remote learning and ensure that software is accessible;
    • Ensure that [domestic violence] hotlines, emergency shelters and other forms of assistance are accessible to and include persons with disabilities;
    • Reduce the prison population by releasing at-risk groups of prisoners, including persons with disabilities;
    • Explore different shelter options that provide physical distancing, and provide sanitation services on the streets,
  • At the same time, Canada’s public health agency published “Vulnerable Populations and COVID-19” which is a very general set of guidelines that offers no new policy ideas.  It describes who is vulnerable (beyond people with disabilities) and “how organizations can support vulnerable populations during COVID-19 outbreaks” (under a separate heading, the document gives “Suggestions for supporting vulnerable populations during COVID-19 outbreaks”). Recommendations are directed at managers of community organizations and include:
    • keep up-to-date about the current situation in your community;
    • contact local, provincial, territorial public health officials to get relevant COVID-19 information, resources and guidance;
    • identify and plan how to continue providing the most critical services;
    • partner with organizations that provide similar services to share resources and strategies;
    • consider stockpiling general supplies and cleaning supplies;
    • educate staff about ways to prevent the spread of COVID-19:
    • provide clear instructions about how to wash hands and cover coughs;
    • [modify] policies to allow sick clients to rest in shelters during the day;
    • provide access to food, drinks and supplies, as possible
    • remind clients to fill or refill prescriptions, and necessary medical supplies
    • limit staff to a single facility, and limit the locations in the facility in which the employees work.
    • [do] not allow visits and non-essential on-site services to facilities;
    • maintain a high level of vigilance to ensure that staff do not go to work with symptoms.
  • The U.N. document offers suggestions to change policies that endanger disabled people’s lives. The Canada Public Health agency washes its hands (so to speak) of the effects of such policies by focusing on details.  One possible reason for this difference is that the United Nations is an advocacy organization, not a government, and so can take stronger positions.  But it would have been nice to see more solid and innovative recommendations come from the Government of Canada.