An advocacy group made up of researchers, physicians, caregivers and other partners have launched a campaign targeting hospitals and long-term care facilities. Caregivers4Change released a Declaration of Family Caregiver Rights and Responsibilities on Wednesday, Oct. 7, 2020, as well as a petition requesting its formal adoption.
“I really hope that we can use [the COVID-19 pandemic] as a learning platform to create systemic change in how we make medical decisions, and in how we respect the role of family caregivers,” said Dr. Daren Heyland, one of two lead authors of the Declaration.
As a critical care doctor at Kingston Health Sciences Centre (KHSC) and a Professor of Medicine and Epidemiology at Queen’s University, Dr. Heyland says he understands the role that family caregivers play in the health care system.
He has witnessed physicians and nurses make end-of-life decisions in the field, balancing time, hospital resources and the statistical probability of a particular outcome, as well as constant, unspoken emotional pressure. He said family caregivers are not always brought to the decision-making table because of the perception that including them is too slow, and too difficult. This exclusion, he said, can end in tragedy.
“I’ve been studying older and vulnerable people, and their family caregivers for decades,” Dr. Heyland said, who has also previously launched the Plan Well Guide to help people prepare for serious illness. “I know the role family caregivers play for advocacy and decision-making. My prior research has documented a lot of problems with decision-making, particularly resulting in medical errors,” he said.
Now, with the COVID-19 pandemic further limiting institutional access for those caregivers, Dr. Heyland said the situation is worse. “When COVID happened, we witnessed decision makers saying — for understandable health reasons — ‘no, family can’t come in to long-term care, or acute care, or other congregate settings.’
“You don’t have that family caregiver, that advocate role, so it has escalated,” he said. “That vulnerable person is in an institution all by themselves, and there have got to be gross medical errors happening,” he said.
“These patients are going through their illness journey all by themselves,” he added, “including those people who died.”
Dr. Heyland: Nationwide standards required
Dr. Heyland co-authored the Declaration with Dr. Hsien Seow. There are also 25 other contributors listed on the Caregivers4Change website. Over 1,100 people have so-far signed the petition.
It calls for guaranteed physical access to vulnerable patients for designated caregivers, caregiver inclusion in decision-making, technology and equipment training for caregivers, and respect for cultural and spiritual beliefs, among other things.
“We are not in a position where we can articulate every practice that has to happen to honour these rights,” Dr. Heyland said. “It’s so contextual, whether it’s a hospital or long-term care; whether you’re at a high endemic rate or a low endemic rate; whether you’ve got lots of resources or little resources at your institution.
“We are trying to standarize across the country: here are the rights decision makers need to adhere to when they’re considering the role of family caregivers,” he said.
On Wednesday, Sep. 2, 2020, the Ontario government released updated guidelines for caregivers in long-term care facilities. These indicate that designated caregivers should be granted unlimited access to their dependents, include screening and personal protective equipment (PPE) requirements, and limitations for other types of visitors.
“Bringing comfort and care, caregivers make a vital contribution to the overall well-being of long-term care residents,” said Dr. Merrilee Fullerton, Minister of Long-Term Care.
Dr. Heyland said more can still be done. He wants to see an ombudsman or administrative body appointed, so that people can submit complaints when things go wrong.
“I have a friend whose mother went into an institution and a month later, died, on an isolated journey,” he said. “She was near the end of life. Why couldn’t they have had some compassionate exception made for their circumstances because of her sickness and her end-of-life experience? But there was no means to request it. Who do they go to to say ‘this isn’t right’?”
Pandemic exacerbating the situation
Dr. Heyland said COVID-19 has highlighted the long-standing, critical role family caregivers play to ensure the best outcomes for vulnerable people. He noted that it’s not only seniors that are suffering, but also other dependent young people and adults, living in care facilities.
“Imagine dying in an ICU, where you have nothing familiar around you and all you see are these eyes of people who are covered from head to toe in PPE. And there is no one there to hold your hand, or sing you songs or offer prayers,” he said.
“We just feel like that has to change. We’re still in COVID-19, and we’re still expecting difficulties, so we are trying to get the word out that these people — family caregivers — are an essential part of the team,” he said.