The Canadian Declaration of Family Caregiver Rights and Responsibilities

One of the toughest times for family caregivers can be when their family member or person they are caring for is in the hospital. The one solace for both patient and caregiver alike, is being able to continue to provide care while they are in the hospital. Advocates for patients and their caregivers have been working hard to ensure hospitals welcome caregivers as essential visitors and part of the healthcare team. Read about advocates’ latest effort – the Canadian Declaration of Family Caregiver Rights and Responsibilities.

Family caregivers and hospital visits

Advocates for patients and their caregivers have recommended that hospitals and other healthcare institutions have a different approach to visitors going forward. Going forward from what? From the experience and stories of families and caregivers with patients and residents the first wave of COVID-19 in hospitals and long-term care facilities.

During COVID-19, most hospitals put into place blanket “visitor restriction” polices, aptly described as a “blunt instrument”.  Advocates for change suggest moving away from such blanket policies to more of a harm reduction perspective. We obviously don’t know how long we will be dealing with COVID-19 and who knows whatever other infectious diseases or pandemics could be in our future. It is great, then, that there is a move to support the essential role of family caregivers and advocacy and to enshrine this partnership role within and across hospitals.

Hospitals (slow) recognition of family caregivers

Hospitals have been slowly evolving to recognize and support patients and families and caregivers as partners in care. Translated, this means having a visitor policy that accommodates caregivers as essential members of the healthcare team. I am old enough to remember when hospital visiting hours were a non-negotiable twice a day for two -hour blocks, and heaven help you if you tried to stay longer.

The last five years have made quite a difference.  For example, compared to 2015, when 32 % of hospitals had accommodated family caregivers, the percentage had moved up to 73% by the winter of 2020.

The hospital response to COVID-19 stalled and stopped progression in its tracks. More attention in the media has been given to caregiver/family visiting restrictions in long-term care than the restrictions in hospitals.

More at risk than COVID-19

Of course, the intentions are good- wanting to minimize risk to patients and hospital staff alike. Nonetheless, it is now being recognized that there is more at risk than COVID-19. Denying caregivers access has not only caused moral distress (for patient, family members, caregivers) but has also risked more positive patient experiences and outcomes that come with the presence of a caregiver.

How do patients do better with the presence of a caregiver?

• Decreased patient anxiety during procedures
• More likely to take medications as prescribed
• Cognitive function maintained
• Lower risk of falls
• Improved accuracy and quality of shared information
• Improved transitions from hospital to home (better understanding of discharge instructions)
• Lower readmission rates

While COVID-19 obviously complicate matters, safety measures, like screening for COVID-10 symptoms, wearing appropriate PPE (personal protective equipment ) and following infection prevention and control practices, can be sufficient for visits to be safe for all.

Family caregiver rights and responsibilities

A number of provincial and national organizations in Canada have released a document called ‘The Canadian Declaration of Family Caregiver Rights and Responsibilities’. This declaration affirms that family caregivers are more than just visitors.

Why a declaration? The Declaration was created with the intention to ensure that family caregivers are never excluded from their essential role as part of the health care team (with the consent of the patient of course). Below is the declaration in its entirety:

#NotJustAVisitor A Canadian Declaration of Family Caregiver Rights and Responsibilities

Family caregivers of any age – whether blood relations or friends of any age – are more than just visitors. We provide care and support to someone living with disease, disability or frailty due to aging. We are often the care recipient’s closest, holistic, and involved care partner. We deserve to be regarded as critical members of the health care team ministering to our loved ones. As such, we maintain that we have the right to:

1. Advocate for our family members to ensure they receive the best care possible.
2. Access, be with, support, care for, comfort, and touch and hold our family members in whatever care settings they may find themselves.
3. Timely and accurate information on our family member’s condition and circumstances.
4. Ensure our family member receives any religious support or ritual, based on their religious and cultural beliefs.
5. Be involved in a supportive role to help our family member decide on the care that is right for them.
6. Access support and time off from caring to uphold our physical and mental health.
7. Combine caring with paid employment.
8. We recognize that we have the responsibility to minimize the risk of transmission of infectious diseases to others.
9. Technology, equipment, and training required for us to exercise our rights that should be provided by health care providers, institutions, or governments.
10. Hold health and social care system leaders accountable for their adherence to our rights and their support of our responsibilities.

Who developed this Declaration?

Caregivers4Change and PlanWellGuide, with collaboration from other national and provincial organizations.

Caregiver4Change is a network of caregivers, researchers, clinicians, and organizational partners across Canada. The movement aims to inspire individuals and communities to support family caregivers.

Plan Well Guide is a free online tool to help people learn about medical treatments and prepare for decision-making during a serious illness, like COVID-19 pneumonia.  

What can be done if you support this declaration?

Caregivers4Change invites Canadians to sign this petition supporting the Declaration and use the hashtag #NotJustAVisitor on social media to advocate for the adoption of the rights in the Declaration. Caregivers are also invited to share their story.

What do you think about having a Declaration? Let us know.