Older people with complex needs are not having their physical and mental health needs met by home supports in community. The public healthcare system currently has long waitlists for publicly-subsidized long term care beds. It also does not offer sufficient subsidies for home care so that people can age at home.

“The system is so broken. My mother should not have been admitted to the hospital, but that was the only thing available after trying very hard to get her into an appropriate facility or care in the home. Had she not gone into the hospital and then into acute care, things would have been very different.” — Family member

If or when someone’s needs can no longer be met at home, there is very little proactive planning for a transition to long-term care. As a result, the transitions are urgent and inadequately prepared, creating crisis situations.

In the stories we heard, the issue began when people sought urgent healthcare for acute illness, injury, or crisis. People initially accessed healthcare services in emergency departments and acute care. These environments, which prioritize efficiency, failed to provide healthcare in a way that accommodates the needs of older people with disabilities, such as providing dementia-appropriate care. Rather, patients with disabilities were subject to environments known to cause distress. Their unmet needs were exacerbated by a culture of efficiency, where providers failed to respond to patient distress with best practises and relational care.

“[My husband’s] needs were not met in a hundred ways. He had a noise and light sensitivity when he went in, had a possible (undiagnosed) stroke and lost use of his dominant hand, and I don't not know if they did not take this seriously or did not read that memo... The antecedent behaviours and incidents were numerous. […] They saw him as becoming violent and unpredictable... His responses were based on intense fear, needs not met, and reactivity to bad care, not his personality or his way. When there was good care, caring interactions, he was happy and calm.” — Family member

For those on wait lists whose health issues became acute enough for placement in long term care, the urgency and unprepared transition to long term care had a similar distressing effect.

Distressing environments do not meet the needs of older people with disabilities such as dementia. In the stories we heard, when people responded to their unmet needs with fear, agitation and distress, healthcare providers labeled them disruptive or unsafe. They quickly applied chemical restraints and physical force to control the person in distress. The labels stayed on the person’s file, and subsequent healthcare providers treated them as dangerous, and defaulted to using restraints.

“[He] became very reactive when he was in care, and on that basis they filled him full of anti-psychotics which did not do a thing to help and made things worse. They labelled him purple dot, shipped him off to the hospital in an ambulance, and put him in the psych unit, and this happened while I had COVID and was not able to see him for a few days. No one asked what was the antecedent, no one asked the question why he became agitated and why he began to lash out.” — Family member

Chemical restraints, such as anti-psychotic medications, have serious health impacts on older people, including an increased risk of death. In the stories we heard, directly following the use of chemical restraints on them, older people experienced rapid and severe decline. They were physically and mentally sedated which meant that their mobility and muscle control was drastically reduced, as well as their energy levels and mental alertness. 

The Canadian Institute for Health Information tracks anti-psychotic prescriptions in long term care in Canada. Since prescriptions for anti-psychotic medications without a diagnosis of psychosis are often for behaviour management for residents with dementia, they consider the practise “potentially inappropriate.” Yet, the potentially inappropriate use of anti-psychotic medications in long term care is a widespread in Canada, and BC’s use is higher than the national average.

In the stories we heard, healthcare providers did not seek consent for treatment decisions or restraints. Decisions were made without the consent or participation of the person or their family supporters. Sometimes healthcare providers applied legal exemptions to consent requirements in the Mental Health Act and Adult Guardianship Act. In other cases, they misused the exemptions. In still other cases, legal exemptions were not at play, but meaningful consent processes were not followed, and individuals and families were uncertain about their consent rights.  

While individuals and family members trusted or expected that processes would be voluntary, they described having little understanding of the consequences of those decisions, little ability to challenge them, or little awareness of what their rights were or what alternatives existed. Many complied with healthcare staff because they didn’t know they could refuse, or they weren’t asked.  

“I had no idea what our rights were. I was told they would do whatever they wanted with [my husband] because he was under the Mental Health Act.” — Family member

Some participants described subtle coercion, where consent was not explicitly sought and decisions were presented as recommendations, care plans, discharge plans, medication plans, or placement decisions. Other family members advocated for consent rights but were shut out of decision making through the misuse of legal tools for exemptions.

“The psychiatrist called to tell me that he [the person impacted] had been admitted under the Mental Health Act. She said that this happened so that they could use more resources such as restraints if they needed them. When I asked what this meant, I was put off, dismissed, not given direct answers.” — Family member

The stories we heard reveal concerning attitudes about patient autonomy and the misuse of legal tools that override consent. We heard multiple stories in which healthcare providers prioritized their favoured outcome over patient refusal, reaching for any legal tools necessary to then override consent. Where clinicians possess extraordinary power to apply legal tools overriding consent, it is concerning that the tools are being used in ways that do not fit their intention.

When family members or supporters tried to advocate for the person or their own participation in decision-making, they were further excluded. Given the circumstances in which older people were subject to chemical restraint and overrides to their consent, it should have been imperative that those who knew them best be involved to support their care and participate in healthcare decisions. Yet, in the stories we heard, family members who advocated were viewed as obstacles. Legal overrides to consent were used to exclude them from decision making.

“Now I can visit him but cannot ask any questions or have a say in [my partner’s] care. After the Adult Guardianship Act they do a support and assistance plan, and [he] declined it. He wanted to go home, and he tried to escape (he was still able to walk at the time). Because he was trying to leave, and I was not there at the time, they instituted the Mental Health Act.” — Family member