Global Survey on Ethics in Long Term Care during COVID-19

Angel Petropanagos, Preet Gandhi, and Nipa Chauhan announce the launch of the Ask-LTC project, which is funded and supported by the WHO Ethics and Governance Unit and invite stakeholders in long term care homes around the world to share the ethical issues they have faced during the COVID-19 pandemic.

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Over the past year, the COVID-19 pandemic has had a devastating impact on people living and working in long term care (LTC) homes in Canada and around the world. In Canada, the majority of COVID-19 related deaths have been in LTC facilities. During the first wave of the pandemic, Canadian Armed Forces personnel were deployed to the hardest hit LTC facilities in Quebec and Ontario to help care for residents. Several practical and ethical concerns related to Canada’s LTC facilities have been identified, including: concerns about living conditions, challenges with medical decision-making and LTC residents’ autonomy, access to hospital services, limited visitation, isolation, reduced staffing, access to personal protective equipment (PPE), vaccine distribution, and unforeseen impacts of infectious disease prevention and control practices. While several national and international reports have documented the clinical impact of the COVID-19 pandemic on LTC settings, there is an opportunity to learn from LTC residents, their families, staff, physicians, and other stakeholders about the ethical issues that they have faced during this pandemic.

We are curious about the nature of the ethical issues faced in LTC and the impact of unique sociocultural contexts in low, middle, and high income countries. We believe that it’s important to investigate whether there is a world-wide common understanding of ethical issues, and whether there are relevant differences between regions and contexts. Indeed, such information is important for informing policies, guidance, tools, and other resources that might inform the long term care sector and its various stakeholders.

Our Ethics Quality Improvement (EQI) Lab team, at William Osler Health System in Ontario, Canada, was recently awarded a grant from the World Health Organization (WHO) Health Ethics and Governance Unit, and the Public Health Emergency Preparedness and Response Ethics Network to address ethical aspects of public health preparedness and response to COVID-19. Our project aims to reveal what are identified as ethical issues in LTC through a literature review and novel empirical data collection from stakeholders that identify ethical issues in LTC homes across the globe, during this pandemic.

We will investigate what stakeholders from LTC contexts around the world identify as ethical issues. We are conducting a short, confidential, multilingual quality improvement survey aimed at asking any LTC stakeholder, anywhere in the world, what specific ethical issues they faced. To maximize engagement with stakeholders worldwide, our survey is available in 8 different languages (Arabic, Chinese, English, French, Hindi, Portuguese, Russian, and Spanish). 

We expect that identified ethical issues will include issues related to vulnerabilities and inequities, resource allocation, containment approaches, communication and engagement, and other health system issues. However, we expect stakeholders may identify additional ethical issues and topics. We are especially interested to learn about regional differences or similarities in the types of issues that stakeholders identify.

The results of this survey will be collected, analyzed, and will culminate in an informed, thorough and cohesive report. This report can be used by the WHO, the Public Health Emergency Preparedness and Response Ethics Network, and other organizations to prepare LTC ethics-related guidance during this current and future public health emergencies that addresses the similarities and differences that exist worldwide. The ethical issues faced by those across the globe can inform decision makers developing ethics-related guidance and tool kits.

Our proposed project will help inform our own ethics quality improvement work in LTC by contributing to knowledge for the future development of LTC pandemic ethics guidelines. Moreover, the identification of ethical issues in LTC around the world can give insight into the various contextual and cultural differences that might impact the experiences of those living or working in LTC, which could be particularly helpful in better understanding the culturally diverse context in Ontario, Canada where we work.

Engaging stakeholders, prioritizing what matters to them, and understanding relevant similarities and differences are all important for ethical preparation and responses to public health emergencies. Please take the survey if you are an LTC stakeholder and help us spread the word. This survey will be open until the end of February 2021. For more information, you can reach out to us on Twitter @ASKLTC.

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Angel Petropanagos is the Quality Improvement Ethicist at William Osler Health System @APetropanagos

Preet Gandhi is a PoET Spread Leader on the PoET Project based at William Osler Health System. @PreetsTweets101

Nipa Chauhan is a PoET Spread Leader on the PoET Project based at William Osler Health System and is also the founder of Café Bioethics. @NipaChauhan

We would like to acknowledge the other members of the WHO Ask LTC project team, Paula Chidwick @PMCEthics, Jill Oliver @JOEthics, Theresa Nitti @NittiTheresa, and Darren Bugaresti and the Ethics Quality Improvement Lab (@EthicsQI) Clinical Ethics Intern, Alison Stere @alison_stere.