Informed health care consent, aging and dementia: making it happen
14 February 2017
By Benedicte Schoepflin
By Isabelle Groc, Community Engagement Coordinator
14 February 2017 – January was Alzheimer Awareness Month, making it a great time for the Canadian Centre for Elder Law (CCEL) to launch a new project that seeks to help people living with dementia better understand their right to consent to health care treatment and medication.
In collaboration with the Alzheimer Society of B.C., the CCEL is reviewing the law, policy and practice of health care consent, with the ultimate goal of making recommendations for improvements in this area.
The project arose from a concern that people living with dementia, family members, and the people who make decisions on their behalf are not always consulted on treatment options and medication. Instead, community care facilities and physicians sometimes appear to be making decisions about medication and treatment. At the same time statistics suggest an overuse of medication by older people in B.C.
For example, in 2015, a report released by the B.C. Seniors Advocate highlighted that more than a third of B.C. care home residents were prescribed antipsychotic medications although only four percent had been diagnosed with a psychiatric disorder. Since then, there has been a decrease in the misuse of antipsychotics, but the Seniors Advocate still notes that more could be done in this area.
An estimated 70,000 people in British Columbia are living with Alzheimer’s disease or another dementia, and the number is growing as the population is aging. The right to health care consent is a pressing issue that impacts all of us; however, people with disabilities and diseases, such as dementia, may face greater barriers to ensuring their rights are respected.
Behind the statistics, there are individuals and their personal stories. No other organization in B.C. is better connected to the real experiences of people living with dementia than the Alzheimer Society of B.C.
The Society, created in 1981, is committed to helping build a dementia friendly society – a place where people living with the disease are welcomed, acknowledged and included. They also provide support, education and information for people living with dementia and their families throughout the province, champion advocacy efforts and enable research into the causes and cure of dementia.
Q&A with Barbara Lindsay, Alzheimer Society of B.C.
A lawyer by training, Barbara Lindsay, the Society’s director of Advocacy & Education Marketing & Communications has been a passionate advocate for the rights of people living with dementia since she started working with the Society 20 years ago. In recent years, the Society has identified Dementia-Friendly Communities as a strategic priority. “We want to transform how society views people living with dementia,” she says. “When you talk to families, you see how challenging this disease is. The health care system, the financial system, and the legal system are just not set up to meet their needs.”
We recently met with Barbara to talk about her insights on this new project and what she hopes to achieve through the Society’s collaboration with the CCEL.
Why is health care consent relevant to people living with dementia?
Barbara: Members of our community identified this issue as a complex area of law. One thing the law says is that we always go to the person at the center of the decision to seek consent, but that doesn’t happen in practice. Often, when people living with dementia are in a care facility, there is an assumption that they are not capable of making decisions so medications are provided without their input. When family members meet with the care facility team, the staff will inform them of the medications they provide, but consent is assumed. Many families tell us that it is only when they receive the bill from the care facility that they find out about the medications that are given to the person they are supporting. They are not told what these drugs are for, what they do or what the side effects are, so they are not really involved in the decision-making. The conversation doesn’t happen.
Yet, it is a legal right to make your own decision. In this context, you are the consumer of health services, and you have the right to be told what the service is, how it will be administered, and you can say yes or no to elements of the service, which includes medication.
What do people typically know about consent rights?
Barbara: Families don’t always know what their rights are, but they are also finding that care providers are not always clear on the rights and the law as well. For example, maybe care providers have some knowledge, but they feel confined by the tight time frame with the number of people they need to care for, and they don’t execute the consent process because they feel they need to take shortcuts. Or, perhaps they don’t even understand the law at all.
Why is it important to conduct this project now?
Barbara: There is a strong emphasis on accountability in care facilities and a growing awareness that everyone has a right to give informed consent. The United Nations has just started to look at the rights of people living with dementia in the context of the rights of persons with disabilities.
What are you hoping to accomplish with this project?
Barbara: We hope to make recommendations for policy, law, and practice changes and understand what the levers for change are, whether it is through more education for health care providers, new regulations in care facilities, or for doctors to become more engaged in terms of ensuring consent.
Our focus at the Society is to transform the way people living with dementia experience their world. We hope that health care providers can understand that people living with dementia and their families have real needs, and that they have to meet those needs. Alzheimer’s disease or another dementia is a difficult diagnosis to receive. There are many things you need to do, and it can feel overwhelming, so when you think of trying to fight for your rights, it can take a back seat to everything else.
To fight for your rights can be hard, so we would like a system where people don’t have to. We would like to ensure that an individual’s rights are honoured, that the process of informed consent is valued and actually happens without you having to push.
What’s next: how to get involved
In the next few months, the CCEL and the Alzheimer Society of B.C. will be holding consultations and focus groups in communities across B.C. to learn about people’s experiences around consent to treatment and medication. If you are a person living with dementia, a caregiver or substitute health care decision-maker for a person with dementia, we want to hear from you. If you would like to participate, please contact Isabelle Groc: firstname.lastname@example.org
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Photos, courtesy of the Alzheimer Society of B.C.:
– Jim Mann has been living with dementia for the last 10 years and is a passionate advocate for the rights of people living with dementia in BC
– Barbara Lindsay, Alzheimer Society of B.C.’s director of Advocacy & Education Marketing & Communications