January 16th, 2021

Caregivers4Change release declaration

By Sulz, Dave on October 9, 2020.

Dave Sulz

Lethbridge Herald


The COVID-19 pandemic has led to restrictions that often prevent family caregivers from caring for their loved ones. And that is hurting the patients, in the view of both caregivers and advocates in the health-care field.

Those concerns have prompted a group called Caregivers4Change, in collaboration with Plan Well Guide and numerous provincial and national organizations, to release a “Declaration of Family Caregiver Rights and Responsibilities,” affirming that family caregivers are more than just visitors.

Daren Heyland, a critical-care doctor in Lethbridge and the lead author of the declaration, said in a news release: “In no way do we suggest or imagine that the rights of the family caregiver supersede those of a patient. Family caregiver rights are consistent with the needs and desires of the people they care for and should complement, not conflict, with patient rights.”

Heyland drafted the declaration with input from Hsien Seow, associate professor from McMaster University and lead of the Caregivers4Change network; Sharon Baxter, executive director at the Canadian Hospice Palliative Care Association, and other colleagues from the Caregivers4Change Network.

The declaration’s authors say there have been too many stories of family caregivers who were unable to perform their caregiving duties due to extreme restrictions on end-of-life visitations.

“We aim to influence policy and practice so that family caregivers are never excluded from their essential role as part of the health-care team except at the behest of a competent care-recipient,” Seow said in the news release.

Caregivers4Change urges decision makers and elected officials to deliver on several key asks:

– Adopt the declaration in the programs and organizations they lead or fund;

– Find ways to give voice to family caregivers to ensure they have representation at the decision-making councils; and

– Implement a strategy that allows for grievances to be rapidly assessed and addressed.

They also encourage Canadians to support this effort by signing an online petition supporting the declaration at https://www.change.org/notjustavisitor and to use the hashtag #NotJustAVisitor on social media to advocate for the adoption of the rights stated in the declaration.

Family caregivers play an important role in the end-of-life care of their loved ones, Heyland said in an interview, and restrictions that remove caregivers from the picture are hurting the people involved. Caregivers4Change is encouraging Canadians to share their stories on the website http://www.caregivers4change.com.

“There’s stories of human suffering behind those signatures,” said Heyland, who, as a critical-care physician, sees people “when they’re very vulnerable.” He added it’s important to recognize the essential nature of the roles of family caregivers, and the message to decision makers is to “please pay attention and acknowledge these are legitimate rights found in the Charter of Rights.” The dialogue toward change must “include the voice of family caregivers so their views and needs can be taken into consideration.”

It’s an issue that touches everyone, Heyland said, noting everyone either is a caregiver, will be a caregiver or will need a caregiver at some point.

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