How Lived Experience Can Transform Long-Term Care in BC
How can lived experience change long-term care to something we would want for ourselves?
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How can lived experience change long-term care to something we would want for ourselves?
When picturing long-term care, many of us would hope for one that supports dignity, autonomy, kindness, and stability. Yet, our current model of publicly funded long-term care in BC falls short of what we would want for ourselves.
For those of us who have not experienced it, it is hard to imagine what it’s like to transition into long-term care. After years of living in the community, your life changes overnight. Suddenly, you’re locked in. You can’t get up or go to bed at the time that you want to. You can’t eat the foods that you want. By the time your food gets to you, it is frequently cold. You are sharing a room with someone that you don’t know. The people who know you best are not around. The room is too cold, or too hot. Your social interactions are very limited and are required to fit a facility schedule that you had no part in deciding. What do you do? How do you feel about it? Would you want to run away?
It is a normal response to be distressed in a situation like this. Yet, in the context of long-term care, and especially for residents who have a mental health diagnosis, distressed behaviour is often treated as a symptom of a psychiatric disorder rather than as a reasonable response to a difficult environment. We’ve become desensitized to how disruptive this transition can be. This reflects a structural shortcoming in the system’s organization. Families frequently reach out to share concerns about their loved ones in long-term care, and the most common theme is that their loved ones are being overmedicated. Specifically, psychiatric medication is being used as a tool to manage behaviour that is viewed as “difficult”.
Some people in long-term care in BC are certified under the Mental Health Act. This means that the person can be given psychiatric treatment without their consent, and without the consent of their family or chosen representatives. Other people in long-term care have lost their right to consent to health care through legal mechanisms like the Adult Guardianship Act, which designates the government as a legal guardian. For these people in long-term care, concerns about overmedication are even more pressing because these laws place additional limits on their bodily autonomy.
Long-term care residents who are certified under the Mental Health Act do not have a say in their psychiatric treatment, and neither do their families or chosen representatives. If the clinical team misunderstands distressed behaviours as symptoms of a mental health disorder, they may treat the behaviours with psychiatric medication. This treatment can happen without involving the resident, or their family or chosen representatives in the decision. Concerned family members who advocate against this overmedication can be shut out from decision-making and even prevented from contacting their loved one in long-term care.
Most clinical decision makers do not intend to cause harm, but their decisions are influenced by systemic pressures and a lack of appropriate tools to manage them. These decisions can have harmful impacts.
There are many factors that impact their decisions, such as:
It is important to acknowledge systemic constraints, yet change can still be possible through a person-centred approach.
Even if the intent of this law is to protect vulnerable populations, it has led to people being excluded from their own healthcare decisions, which causes harm. It is difficult to have person-centred care when the law doesn’t require asking a person what they want or need. Even in a resource-constrained environment, it is possible to address the gap between intent and impact by increasing understanding of the impacts.
To achieve a more person-centred model of care, the starting point must be asking the people impacted. Their stories are powerful. Centring the stories of people impacted by clinical decisions can help increase understanding. This then can fill the gap between the intent and the impact of key clinical decisions that cause harm.
Supported by the Conconi Family Foundation, Health Justice is leading an engagement project to examine the use of the Mental Health Act in long-term care, centring lived experience to inform meaningful recommendations. We approach this project by listening to the stories of people who have experienced loss of consent while in long-term care, or leading up to it. By centring their lived experience, we aim to understand the impacts of health care decisions, rather than assuming that the impact aligns with intentions. This is the starting point to explore what can change to improve systems and prevent harmful impacts.
Listening to and gathering stories requires a lot of care in the process. We must care for the lives of the people sharing, consensually engage with them, respect their time and their needs. We must care for their stories, and how they can be shared. We will share more about our engagement approach in our next blog post.
This blog post was written in collaboration with Health Justice.
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