Introduction

Webcast archive: Nursing home residents call for community-based care

This week, we discuss the demand from younger Quebec nursing home residents for community-based care.

Webcast archive: Nursing home residents call for community-based care

In this episode of Euthanasia & Disability, Amy Hasbrouck and Christian Debray discuss:

  • Nursing home residents in Québec organize to claim their right to community options
  • FAQ:  Aren’t we making people endure terrible pain and suffering if we don’t allow doctors to help them die?

Please note that this text is only a script and that our webcast contains additional commentary.

NURSING HOME RESIDENTS IN QUÉBEC ORGANIZE TO CLAIM THEIR RIGHT TO COMMUNITY OPTIONS

  • A group of nursing home residents in Québec has organized to provide mutual support and to call for community-based care options.
  • L’Alliance Québécoise des citoyens hébergés (the Québec Alliance of Citizen-Residents) was established in December to give a voice to the 3,500 people with disabilities under age 65 who live in nursing homes and hospitals in Québec.  The founder, Jonathan Marchand, states on the group’s Facebook page:
  • “We are currently being forced into institutional care due to the lack of home support services tailored to our needs. This has serious human, social and financial consequences. The current situation pushes victims to suicide to avoid institutionalization.”
  • TVNDY documented this problem in 2015 when we interviewed Gabriel Bouchard, who starved himself to death in large part because of a lack of employment and social supports.  Other disabled people have died after refusing treatment, and sought euthanasia because they were forced to live in institutions.
  • The group states that its mission is to:
    • “Defend our rights and liberties,
    • Discuss and resolve administrative problems,
    • Develop residential resources adapted to our needs,
    • Denounce the lack of home care programs,
    • Fight for an environment adapted to our needs,
    • Demand care that is appropriate and personalized,
    • Provide mutual support.”
  • AQCH members Jonathan Marchand and Daniel Pilote have made media appearances discussing the situations that forced them into institutional care, and the social priorities that deny people with disabilities the liberty to live independently in the community.  The group invites those living in nursing homes and other residential facilities to provide testimonials about their experience living in institutions.
  • For more information about the Québec Alliance, contact Jonathan Marchand at 1-866-597-5485 or email support@aqch.info.

FAQ:  AREN’T WE MAKING PEOPLE ENDURE TERRIBLE PAIN AND SUFFERING IF WE DON’T ALLOW DOCTORS TO HELP THEM DIE?

  • Although physical pain is often cited as the main reason for allowing assisted suicide, pain is rarely an important factor when people ask to die.  Only 25% of people who ask for assisted suicide in Oregon list “pain or concerns about pain” as the reason they want to die.  In fact, physical pain can almost always be controlled.
  • Many people have watched a loved one die in pain without realizing that this outcome is dictated by the medical system.  Doctors have only a few hours of training in pain management in their entire medical education, are unaware of the wide range of pain-control methods, and are often afraid of using narcotics to ease pain.  Illnesses and conditions that can’t be “cured” are a problem for a health care system that is focused on results.  Finally, only a small percentage of the population has access to effective palliative care.
  • When people talk about “suffering” they often mean the grief that comes with any major loss in life, such as losing the ability to walk, or the loss of a spouse or child.  With encouragement and support, it’s possible to pass through this grief to feelings of peace and acceptance.
  • As well, dealing with unresolved personal or family issues can bring relief from anxiety and grief.
  • Finally, depression usually underlies suicidal feelings, whether the person has a terminal illness, a disability, or is able-bodied.
  • Another kind of “suffering” has to do with becoming disabled.  In Oregon, the reasons people give most often for asking for assisted suicide include: losing the ability to do favorite activities (89%), becoming dependent (91%), feeling like a burden (41%), loss of dignity (78%) losing control of bodily functions (48%).  Yet with architectural access and consumer-controlled home-based services, people with disabilities can stay active, integrated and in control of their lives.
  • People with disabilities worry that these disability-related reasons have become widely accepted as good enough to allow assisted suicide.  This is manifest in the widely-held belief that it is better to be dead than disabled.