Webcast archive: 18/09/28

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

  • Residents take action over appalling conditions in long-term care in Quebec

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

RESIDENTS TAKE ACTION OVER APPALLING CONDITIONS IN LONG-TERM CARE IN QUEBEC

  • We’ve often talked about how residential care is not the best option for many people with disabilities.  The loss of control over one’s life, the lack of privacy, the inability to pursue careers and education, the rigid and bizarre schedules, and living with people of another generation all reduce disabled people’s quality of life.  For example, one woman in Rivière-du-Loup celebrated her 34th birthday among neighbours twice her age and away from her family after being moved four times in one year.
  • Which is why we believe that self-directed personal assistance services must be available for those who prefer to live in their own homes in the community.  It’s not a perfect solution; managing a staff of attendants isn’t easy, it can be hard to find dependable assistants, and abuse does happen.  But the staffing ratio and the person’s ability to control how their money is spent improves the chances of a good outcome.
  • Many people who follow disability issues, or who have elderly relatives, are aware of the numerous problems in nursing homes. In 2017, the following incidents made the news.
    • There were 42 confirmed cases of abuse and neglect in Nova Scotia in 2017.
    • Verbal abuse directed towards seniors was reported at a city-run facility in Ottawa.
    • A man with dementia was repeatedly punched in the face by a staff member at another home in the capital.
  • News outlets in Québec have reported a growing number of incidents caused by poor hygiene and inadequate staffing in long-term care facilities (des centres d’hébergement de soins de longue durée or CHSLD).
    • One nursing home in Gaspésie did not provide residents full baths (only sponge baths) for several years.
    • A man in Sherbrooke was left in bed because there were not enough staff to help him, even to get to the toilet. He was forced to soil himself, and sit in his feces for a whole day.
    • Residents of a Laval nursing home went without meals and baths, while the staff person who reported the problem was disciplined.
  • One Québec advocate, Daniel Pilote, is fighting for reparations. At age 56, he’s a “younger” resident of a nursing home in Saint-Jean-sur-Richelieu. Mr. Pilote has lived in long-term care for four years because he doesn’t qualify for self-directed home-based attendant services. He compares the facility to living in a prison without being guilty of a crime.
  • Each morning he is helped to wash, dress, and get into his chair in about 10 minutes. Rushing through these essential everyday tasks can cause dangerous and painful errors.  His tracheotomy is sometimes not cleaned properly, which makes it harder to breathe and saps him of energy.  As well, he is sometimes injured when attendants move him roughly.
  • If you go to his Facebook page, you can see photos of the unappetizing food that residents are served. At times, the humiliation, depression, and abuse Mr. Pilote has faced has even “affected his desire to live.”
  • Mr. Pilote has used social media to contact residents of other CHSLDs about conditions elsewhere in Québec.  He is now working with the Conseil pour la protection des malades (CPM) to obtain compensation on behalf of residents of long-term care facilities where conditions are so “inappropriate, insufficient and deficient” as to “constitute an infringement of the rights protected by sections 1 and 4 of the Quebec Charter of Rights and Freedoms, … section 10 of the Civil Code of Québec and the Act to combat abuse of elders and all other vulnerable adults.”
  • Mr. Pilote is the named representative plaintiff, along with the CPM, in a class action lawsuit filed in July against Quebec’s regional health and social services agencies. The plaintiffs represent approximately 37,000 residents of nursing homes across the province. The text of the complaint is available online (in French).
  • The lawsuit claims the province is violating the plaintiffs statutory and charter rights by not meeting basic standards of staffing and hygiene, not delivering services required by law, and making it necessary for residents to pay “under the table” for needed services.  Challenged practices include:
    • Only providing one bath per week;
    • Not helping people get to the toilet, thereby forcing them to use diapers;
    • Not changing adult diapers often enough;
    • Not providing adequate dental hygiene and care;
    • Inadequate health care;
    • Failing to administer medications as prescribed;
    • Using antipsychotic drugs to restrain and sedate residents;
    • Excessive use of physical restraints;
    • Lack of physical, intellectual and social stimulation;
    • Serving meals that are not appetizing or nutritious;
    • Not taking enough time to feed people who have trouble eating;
    • Charging for goods and services that are supposed to be included, such as:
      • laundry services;
      • baths or changing diapers;
      • soap, shampoo and toothpaste;
    • Leaving combative residents unsupervised, thus exposing other residents to violence; and
    • Not respecting residents’ right to sleep by waking them in the night to perform housekeeping or personal care tasks;
  • If the suit is successful, people living in long-term care centres across the province would share a payment of $500 million in damages, the amount depending on how long they’ve been in the facility and what they’ve spent on goods and services.  However the lawsuit does not explicitly seek to correct the problems, nor does it recommend increasing access to home-based services.
  • The complaint comes five years after the settlement of the class action lawsuit against the St-Charles Borromée residence over complaints of neglect and abuse.  That case, filed in 1999, settled out of court after 13 years, for more than $7 million, which was divided among 600 residents.
  • Conditions in the CHSLDs have become a major issue in Quebec’s provincial election, coming up on October 1. The Liberals have proposed to create 1500 new long-term care beds (of which 500 would be reserved for people under 65 years old) and to attract more staff by raising salaries.  Parti Quebecois leader Jean-François Lisée has promised $200 million in renovations to CHSLDs, including air conditioning in all facilities, and to “improve” the ratio of staff to residents.
  • François Legault, leader of the Coalition Avenir Quebec (CAQ), has vowed to replace CHSLDs with smaller “Seniors homes” featuring air-conditioned rooms.  Legault said that “The state has a responsibility to house our seniors and we need a new direction. We must do it in a humane way. We owe it to our elders who built Quebec.” And while Legault hinted at support for home care, (“Right now a person who goes into a CHSLD costs $86,000 per year. Between $86,000 and zero, there must be a way of helping caregivers help people stay in their homes.”) he also supports extending euthanasia to people with dementia.
  • Being unable to control one’s life – at the mercy of institutions, their staff and policies – can cause suicidal despair among elders and people with disabilities. The introduction of assisted suicide and euthanasia makes these situations even more risky, because residents will now have the means, and society’s blessing, to end their lives. Providing self-directed care will not just improve the lives of people with disabilities – it can save them too.