Paula Chidwick, Jill Oliver, and Carrie Bernard focus attention on the engagement of long-term care residents in the process of reform.
The COVID-19 pandemic has revealed deep discrepancies between public expectations and the range of realities in Ontario’s long-term care homes. In a previous commentary, Maya Goldenberg aptly addressed the history and context of some of these issues, which result from a need for sustainable funding for long-term care facilities, better wages, and working conditions. Goldenberg suggested that federal jurisdiction, rather than provincial control and privatization would provide better oversight, and ensure adequate funding to meet national standards of care.
As the long-term care system is reformed following this pandemic, there are important ethical and legal considerations that create obligations for all of us as we consider change. First and foremost, we have to involve residents in redesign, quality improvement initiatives, and in decision-making given that this work all occurs in the context of their “home”. This single characteristic entails a different kind of thinking when responding to the issues raised by the pandemic.
In Ontario, long-term care homes must follow a law called the Long-Term Care Homes Act. It includes a Residents‘ Bill of Rights. The purpose of the Residents’ Bill of Rights is to ensure that “resident rights are guaranteed by law” and to ensure “long-term care homes are truly homes for the people who live in them.” It goes on to say that the “home” is the fundamental principle: “a long-term care home is primarily the home of its residents and is to be operated so that it is a place where they may live with dignity and in security, spiritual and cultural needs adequately met.” Every licensee of a long-term care home must ensure that the enumerated rights of residents are fully respected and promoted.
The Bill contains 27 articles that outline and protect residents’ dignity, their interests, safety, wishes, beliefs, and values. It includes protections that entail obligations for staff and homes. For example, residents must be protected from abuse, be able to exercise the rights of a citizen, be properly sheltered, fed, clothed, and groomed. It also includes residents’ right to be included in any decision concerning admission, discharge, transfer, and their treatment or care plan. Every resident has the right not to be restrained, and to raise concerns without fear of coercion, discrimination, or reprisal.
Ultimately, this Bill describes obligations for all individuals working for long-term care facilities. Any other priorities must always be positioned in the context of the Bill and with the understanding that proposed initiatives are taking place inside a home. For example, Infection Prevention and Control protocols have been widely recognized as a first line response to contain COVID-19 and to prevent onward transmission. Although the need to contain infection is completely appropriate, when concerns about infection prevention and control are raised in long-term care there will be unique considerations related to implementation remedies because long-term care is a home, not a hospital.
COVID-19 presents opportunities to think differently about responses to pandemic-related issues and to uphold legal obligations to residents. Responses should include the engagement of residents or substitute decision-makers regarding proposed changes. They must be involved in plans about relocating (either within the home or outside), or about cohorting residents together, and must be part of developing a dignified approach to moving residents. We cannot know what is most important if we don’t include residents in decision-making.
In general, engaging with residents helps ensure that decisions better align with the residents’ needs and preferences. Residents and substitute decision-makers require timely and relevant information about the home’s plans related to the pandemic and the potential impact on residents. For example, plans should include the full range of options a resident may have (such as staying in their current home, moving to another long-term care home, and temporarily or permanently leaving their long-term care home) should an outbreak occur in the facility.
On May 19, 2020 Dr. Merrilee Fullerton, Minister of Long-Term Care announced an “Independent Commission into Long-Term Care”. The goal of this commission is to investigate “concerns raised by COVID-19 outbreaks in long-term care homes across the province.” In addition, Ontario’s Patient Ombudsman announced a systemic investigation into resident and caregiver experiences at long-term care homes with outbreaks of COVID-19. These investigations will examine the “actions or inactions of individual long-term care homes … in response to COVID-19” and report on common system factors.
However, as we learn from these investigations, we must also include residents in any deliberations. We will not know what is most important to residents, how they feel about different risks and benefits, how they want to live in their homes, unless we ask them and include them in the discussion and decision-making. We must engage residents to inform new solutions, to create the path to get there and to ensure we are making meaningful and wanted changes.
Carrie Bernard is a family physician at William Osler Health System and an Assistant Professor in the Department of Family and Community Medicine at the University of Toronto and Assistant Clinical Professor in the Department of Family Medicine at McMaster University. @carriedbernard