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Posts Tagged "consent"

27Feb

Dementia law report recommends better oversight on health care consent

by admin

Jim Mann wants everyone to know that he’s more than his dementia.

He was diagnosed with Alzheimer’s 12 years ago, but that doesn’t mean he can’t be involved in making decisions about his health.

The distinction is important for Mann — and many others living with dementia. The Surrey resident is thinking a lot about consent these days after being part of an advisory committee on health care consent for people with dementia. Their report, Conversations About Care, was released Feb. 27.


Surrey resident Jim Mann was diagnosed with Alzheimer’s 12 years ago.

Arlen Redekop /

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Mann, 70, said professionals in health care still make assumptions about people with dementia.

He recalled an emergency room incident when a nurse yelled his name and added “patient only.”

“My wife and I stood up and walked over. Halfway there, she (the nurse) yelled again ‘patient only.’ I got up to her and said ‘my wife needs to be with me. I have Alzheimer’s.’ She turned around and looked me up and down and said ‘well, you look fine.’ “

Mann said that while the public might not always understand that dementia is a cognitive impairment not a physical one and therefore not visible, he believes that kind of language isn’t acceptable in a health care environment.

“Within the medical system, I’m sorry, you should really know this by now,” he said.


Jim Mann says professionals in health care still make assumptions about people with dementia.

Arlen Redekop /

PNG

The two-year collaborative research project that Mann was a part of was undertaken by the Canadian Centre for Elder Law and the Alzheimer Society of B.C. Funding included a $40,000 grant from the Law Foundation of B.C.

The goal of the project’s Conversations About Care report is to ensure that the legal framework in B.C. remains strong enough to protect people living with dementia as well as those named as their legal substitutes.

In 2018, about 70,000 people in B.C. were living with dementia. By 2033, that number is estimated to increase to almost 120,000.

Krista James, national director of Canadian Centre for Elder Law at the University of B.C., said the report is intended to start a conversation about the rights of people with dementia.

“I feel that we’re missing that rights-based lens that recognizes the rights of older people to make choices about what happens to them,” she said.

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“Although the law is different in each jurisdiction, and this report applies specifically to the experience in B.C., we need to open up that conversation to think about the citizenship rights of older people in a health care context. It’s really urgent.”

The report’s 34 recommendations were developed through a process that included consultation with people living with dementia, family caregivers, health care professionals, and others who deal with consent on a regular basis.

James said the origins of the report came from phone calls she received from family caregivers who felt frustrated that decisions were being made without consultation.

B.C. is ahead of many other provinces because of our comprehensive health care consent statute called the Health Care (Consent) and Care Facility (Admission) Act.

“From our perspective, the health care consent law in B.C. is super robust and I think fairly clear,” James said.

“It says if it’s not an emergency, you need to get that prior informed consent. The care facility regulations that govern long term care don’t seem to be consistent. There is a lot more wiggle room.”

That means some physicians, licensed practical nurses and care aids don’t understand the concept of prior informed consent for non-emergency care.

“I have talked to a few people who think that if the person is in the care facility they have consented to all the care that the people who work there think is the right care for them,” she said.

“Some of the staff don’t understand they have to get consent. They confuse admission to the care facility with consent to all the meds.”

One of the report’s recommendations calls for all licensed long-term care facilities to set out rules on restraints, including chemical restraints (medications such as antipsychotics used to control aggressive behaviour).

Other big concerns include the challenge of sorting out situations where family members making decisions about care for someone with dementia can’t agree on what to do. One way to address that, James said, is to have social workers involved in helping families find a solution.

James said the report recognizes that health care providers are never going to be experts on the law.

“They’re not lawyers,” she said. “We shouldn’t expect them to be experts on the finer details of the law. They need to have support so they can properly interpret the law.”

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Recommendations of the report

• Improving health care decision-making laws in B.C. by adding language to recognize that people’s capacity to make health care decisions can vary from day to day and decision to decision, and that they be involved to the greatest degree possible in all case planning and decision-making.

• Address barriers to informed consent experienced by Indigenous people and people who need language interpretation, and create financial incentives to support physicians so they can spend time to talk with patients and families.

• Create a review tribunal to allow people living with dementia to review health care decisions made by substitute decision makers.

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20Jan

A wheelchair user’s guide to consent

by admin

Last Saturday afternoon, a disturbing incident occurred on a street in Nanaimo involving a female wheelchair user. It’s the type of incident many disabled people say happens often on our streets and public spaces.

Bronwyn Berg had just left a store on Fitzwilliam Street when a man grabbed her wheelchair from behind and began pushing her rather quickly. She turned, looked directly at him and said “no, no, no.”

But the man didn’t stop. Berg screamed, “stop” twice and called out for help. Passersby on the street looked away, or at their phones, she said.

Finally, the man let go and ran away.

Later, she shared the frightening experience on social media, which elicited an outpouring of support. Many people posted angry reactions to the Nanaimo man’s actions.

Berg says she has no idea what the man’s intentions were and believes that focusing on that misses the point.

“The point is never, ever touch a wheelchair without asking,” Berg said. Aside from the risk of injury, she says the more fundamental issue is one of consent and body autonomy.

“Our assistive devices are a part of our body. We aren’t furniture that can be moved around.”

‘I didn’t need help’

The lack of support from passersby also left Berg shaken. “I thought I’m alone here. I’m not safe in this world…I felt invisible.”

She doesn’t know why the man approached her, “I didn’t need help and wasn’t asked,” she said, adding that when she did ask for help, people ignored her.

As a wheelchair user myself, I know what it’s like to have strangers push me without asking — even when I tell them to stop.

Once, an impatient taxi driver pushed me without warning, causing my wheelchair to tip and throwing me onto the pavement outside Vancouver General Hospital. 

When I became disabled, the goalposts for consent and support for my autonomy and rights shifted

“The point is never, ever touch a wheelchair without asking,” says Bronwyn Berg. (Submitted by Bronwyn Berg)

Strangers demand to know, “What happened to you?’ or “‘Why can’t you walk?”

Our needs are ignored by the physical, social and political environment we exist in. It is little wonder people don’t ask before grabbing us. Disabled people aren’t seen as fully human.

What is the cumulative impact is of being touched without consent and met with hostility when you tell people to stop? Are these experiences helpful for a demographic already at risk?

Statistics show disabled women are twice as likely as non-disabled women to be the victim of a violent crime.

Once on Denman Street in Vancouver, I felt the hands of a man on my back. My wheelchair has no handles, yet people still push me. I struggled with my gut that said he was a threat, and the fact I’d had to learn not to react with hostility when grabbed.

Later that day, I saw the man’s face again on Twitter. The tweet was from VPD. He was a serial sex offender, considered at high risk to re-offend, who had failed to return to his halfway house.

#JustAskDontGrab 

Our struggle is not new but social media has provided disabled people with a new way to connect, share and organize.

Amy Kavanagh, a visually impaired activist and campaigner in London, England started the #JustAskDontGrab campaign last August.

Kavanagh said she launched the campaign after she became a white cane user and people started grabbing her on her commute.

After hearing from others with similar experiences, Kavanagh created #JustAskDontGrab to educate people on how to behave when they encounter disable

“I encouraged people to use the hashtag to raise awareness of the issue and how to offer assistance in a positive respectful way.”

Amy Kavanagh, a visually impaired activist and campaigner in London, England started the #JustAskDontGrab campaign last August. (Submitted by Gabrielle Peters)

Kavanagh does not want people to stop asking disabled people if they need help. Once, when the front caster of my wheelchair became wedged while crossing an inactive railway track, I was grateful when a passerby asked if I needed help.

Which raises the question of whether assistance would be needed if our cities were more accessible to disabled people.

Removing existing barriers and preventing the building of new ones is the motivation behind accessibility legislation in Ontario, Nova Scotia and Manitoba. British Columbia has none.

Berg’s perspective on accessibility has changed. The steps in front of three stores on Fitzwilliam street in Nanaimo prevented Berg from entering the first businesses she turned to for safe refuge.

“It used to mean that I wasn’t allowed to fully participate in the world. I often felt unwelcome, but now it feels dangerous,” Berg said. “No one would intervene and I couldn’t get to a safe place.”

Berg has not gone out alone since it happened. “I don’t think I’ll ever return to that area of town.”

This column is part of CBC’s Opinion section. For more information about this section, please read our FAQ.




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