By Heather Thiessen (Patient with lived experience) and Trudo Lemmens (Professor and Scholl Chair in Health Law and Policy in the Faculty of Law, the Dalla Lana School of Public Health, and the Joint Centre for Bioethics at the University of Toronto)
In the midst of the pandemic crisis, the Canadian Foundation for Health Care Improvement brought together a Rapid Response Expert Advisory Group to look at the Re-Integration of Family members in health care settings across the country. Both of us joined this broad interdisciplinary group of patients, family and caregivers, healthcare leaders, physicians and academic experts of various disciplines to explore how to ensure that pandemic policies pay proper attention to the need for supportive family caregivers. One of us (HT) comes to this as a patient representative with lived experience and previous involvement in the promotion of Patient- and Family- Centred Care (PFCC); the other (TL) as an expert in health law, policy, and ethics. Like many people in Canada, we both have, either as patient or family, been worried about the potential havoc COVID-19 could cause, particularly for already vulnerable and marginalized people. But we also have seen the often devastating impact of isolation policies aimed to protect patients, healthcare providers, and the general public, on these very same people. We both feel strongly that the Advisory Group’s support for the prudent re-integration of family caregivers is a reasonable response and is even essential, when we look at what we have learned at this point, including from provinces and institutions which took the lead in implementing more balanced policies. We believe it should guide pandemic policy making in the future. The seven key steps described in the report reflect the philosophy under girding PFCC, and respect established legal and ethical standards of care that Canadian institutions should adhere to.
First, why are the key steps reflecting PFCC’s philosophy of care, which is grounded in creating authentic partnership between patients, family caregivers and care providers? Being a patient who deals with many chronic complex conditions, I (HT) have seen, with good and bad experiences, how a commitment to PFCC really improves our journey within the healthcare system. I know when I am at my sickest, my husband is my main family caregiver. He is a gift to the healthcare team for he knows all about me and my safety is secure for he can speak on my behalf when I am not able.
Even though by early 2020 (prior to the pandemic) more than 70 percent of hospitals had adopted family visiting policies1 which reflect some commitment to PFCC, COVID-19 took the healthcare system by storm and really threw us back with respect to how patients and family caregivers were seen. From being recognized as important partners, patients became nearly overnight passive recipients of healthcare, and family caregivers at best mere visitors, at worst potential sources of contamination. The partnership that many patients and family caregivers across Canada worked so passionately towards over the past few years had disappeared. We were faced with a pandemic that health organizations were not sure how to navigate. As a patient, I (HT) do feel that with any partnership, there must be trust and that at times it is indeed best to allow others to lead. Responding to this seemingly unprecedented threat required expert leadership and fast, cautious reaction. Unfortunately, the many blanket statements regarding family presence were undermining the PFCC-style partnership, even though the intent of bringing it forth was to ensure a safe environment within our hospital and senior living settings. Families were no longer seen as essential partners in the patient’s life, but became visitors who suddenly had nothing to contribute to the care of their loved ones.
Being invited to be part of the Advisory Group gave me hope in these challenging times. What I found particularly promising is how CFHI did a cross Canada survey of what was being done regarding family caregivers as essential partners in care. The results varied greatly, and we learned that many provinces, such as British Columbia and Saskatchewan, did take another careful look at their family caregivers’ presence as essential to the health of patients during the pandemic. However, there was no consistency, and the stories from many family caregivers who were not allowed to support their loved ones were overwhelming and saddening.
There were many strong voices from across Canada who came together for several weeks to help develop this report. CFHI didn’t try to sway the conversation one way or another but based it on facts. The advisory group’s work reflected the CFHI philosophy we feel passionate about: all voices around the table were heard and of equal value. The information shared was real and at times raw. We learned to understand other perspectives. Healthcare leaders and providers, as well as all others, committed to doing better and learning from best practices around the country. That is what struck us as exemplary partnership in health care: everyone on the advisory co-created the report that will help us rethink and do better for the sake of all patients, family caregivers, care providers and our health care system.
This is a difficult time, but what is even more heartbreaking is knowing so many families were torn apart and some will never be mended due to the so many misinterpretations of what a family caregiver is. Hopefully together we can help heal those broken hearts.
As health law, policy, and ethics scholar, with lived experience as a person with a disability and family member of a person in need of family support, I (TL) also laud how the report’s key steps and the advisory group drafting process reflect strong legal and ethical standards, including those reflected in our Charter of Rights and Freedoms and in human rights law. When it comes to process, Ontario’s experience with SARS notwithstanding, policy makers and the healthcare community have been taken off-guard by the arrival of COVID-19. The spectrum of serious societal and healthcare upheaval explains why drastic policies were imposed nearly overnight and often without real democratic deliberation. The unusual nature of a pandemic made fast and drastic intervention inevitable, but ethics and human rights policies emphasize the importance of inclusive decision-making and public accountability, precisely when policies risk impacting significantly on patients and families and on specific communities.
The Advisory Group had the benefit of hindsight, and the time and space to listen broadly and to learn from experiences on the ground. Policy makers should benefit from this inclusive process to implement change. The report’s substantive key next steps also resonate with clearly established principles of law and ethics. Indiscriminate isolation policies had devastating impacts on some of the most vulnerable members of society. Evidence referred to in the report indicates these policies were disproportionate, that other less severe approaches were not only feasible, but also coherent. Most importantly, these inclusive approaches promote the well-being of patients and caregivers and support health care providers in ensuring adequate and efficient care.
Charter and human rights law, which remains as-if not more important than ever in those circumstances, emphasizes the need for proportionality when measures impede on rights and interests of individuals and families. Various rights are at stake in this health care context. Isolation policies impact on informed consent and the right to make self-regarding health care decisions, embedded in the right to life, liberty and security of the person. Discrimination law imposes on healthcare providers, institutions, and governments a duty to accommodate people with disabilities who rely on family caregivers or essential support people to communicate, or to have otherwise access to the same level of care all others enjoy. This duty is not absolute — accommodation has to be realistically possible — but we see no reason why this can currently not be done safely.
Total isolation may also have such an extraordinary negative impact on the physical and psychological well-being of vulnerable individuals that even the Charter right to be free from cruel and unusual treatment could arguably be at stake.
All this to say that the key next steps of the report, and the report's endorsement of the exemplary policy making in some provinces, are not just in line with the values of PFCC, but also reflect well established legal and ethical principles.
We hope that provincial health agencies, institutions, and healthcare providers across the country will be inspired by this document to improve pandemic policy planning, and to restore the trust between patients, family members, and the broader healthcare community; a trust which is such an essential component of Patient- and Family- Centred Care. We are all in this together. All of us all are affected by this in various overlapping ways: as patients, family members, health care providers, and policy makers.
Download the Re-Integration Report
Heather Thiessen
Trudo Lemmens
1
Canadian Foundation for Healthcare Improvement. MUCH MORE THAN JUST A VISITOR: An Executive Summary of Policies in Canadian Acute Care Hospitals. (2020). Accessed via: https://www.cfhi-fcass.ca/docs/default-source/itr/tools-and-resources/better_together_executive-summary_en.pdf