Honouring the Voices and Experiences of Long-Term Care Home Residents, Caregivers and Staff During the First Wave of COVID-19 in Ontario
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Honouring the voices and experiences of Long-Term Care Home residents, caregivers and staff during the first wave of COVID-19 SPECIAL REPORT – October 2020 Honouring the voices and experiences of Long-Term Care Home residents, caregivers and staff during the first wave of COVID-19 in Ontario Patient Ombudsman 1 Honouring the voices and experiences of Long-Term Care Home residents, caregivers and staff during the first wave of COVID-19 Table of Contents Land Acknowledgement .......................................... 4 Dedication ............................................................... 4 Foreword from Cathy Fooks, the Patient Ombudsman ........................................................... 5 Executive Summary ................................................ 6 Complaints to Patient Ombudsman ..................... 6 Crisis in Long-Term Care Homes .......................... 6 What Patient Ombudsman heard ........................ 6 Recommendations .............................................. 7 Intent of this Report ............................................... 8 Patient, Resident and Caregiver Complaints during the COVID-19 Pandemic .......................................... 8 Existing Context and Dynamics of the Pandemic ......9 Overview of Complaints to Patient Ombudsman March to June 2020 .............................................. 10 Crisis in Long-Term Care Homes ........................ 12 Visitation........................................................... 14 Infection Prevention and Control ....................... 16 Communication ................................................. 17 Quality of Care .................................................. 17 Staffing ............................................................. 18 Discharges and Transfers ................................... 19 Testing .............................................................. 20 Access to health services ................................... 21 Personal Protective Equipment ......................... 21 Delay in treatment ............................................ 22 Patient Ombudsman 2 Honouring the voices and experiences of Long-Term Care Home residents, caregivers and staff during the first wave of COVID-19 Practices from other jurisdictions and in the Recommendation #3: Dedicated resources for literature .............................................................. 22 communication ................................................. 27 Partnerships ...................................................... 22 Recommendation #4: Enhanced whistleblower protection ........................................................ 27 Visits ................................................................. 23 Conclusion ............................................................ 28 Communication ................................................. 24 Next Steps in Patient Ombudsman’s Systemic Whistleblowing in LTC ....................................... 24 Investigation ..................................................... 28 Provincial Policy Recommendations ..................... 25 Appendix A. How Patient Ombudsman has Recommendation #1: Backstops and contingency responded to the COVID-19 Pandemic ................. 29 plans for all health care providers ...................... 25 Our objectives .................................................. 29 Recommendation #2: A change in approach to References ........................................................... 30 visitation ........................................................... 26 Patient Ombudsman 3 Honouring the voices and experiences of Long-Term Care Home residents, caregivers and staff during the first wave of COVID-19 Land Acknowledgement Patient Ombudsman acknowledges that, traditionally, Toronto, where our office is located, was a gathering place for many nations including the Anishinabeg, the Haudenosaunee and the Wendat peoples. Patient Ombudsman acknowledges the area covered by Treaty 13, also known as the Toronto Purchase, and we pay respects to the Mississaugas of the Credit. Patient Ombudsman also pays special recognition to the other lands or territory belonging to Indigenous people throughout Ontario and the traditional lands and territories where individuals who contact Patient Ombudsman may be contacting us from. Dedication We dedicate this report to the 2803 Ontarians who died from COVID-19 and their loved ones. We also dedicate this report to the healthcare workers responding to COVID-19 across Ontario’s healthcare system. Patient Ombudsman 4 Honouring the voices and experiences of Long-Term Care Home residents, caregivers and staff during the first wave of COVID-19 Foreword from Cathy Fooks, the Patient Ombudsman The last few months have been exceptionally specific findings and recommendations will difficult for Ontario’s patients, long-term care follow at the conclusion of the investigation. As home residents, their families and caregivers as such, what we have heard from complainants to they have navigated the COVID-19 pandemic date about long-term care homes and other and the significant upheaval in Ontario’s organizations is the basis of this report. What is healthcare system. Rightly, provincial and local clear is that we must prevent what happened public health authorities, healthcare providers from happening again. and government put measures in place to There have been a dozen public reports issued prevent the spread of the novel coronavirus in in the last six months proposing an overhaul of March. This undoubtedly saved many lives. Canada’s long- term care system, enhancing However, these measures disrupted the normal supports for infection control and procurement relationships between healthcare providers and of protective equipment, and re-introducing their patients. The measures separated those families back into facility-based care with inside the healthcare system from their appropriate precautions. This report intends to supports outside the system. This has been a contribute to that reform through a lens of source of anxiety and confusion for many. patient and caregiver experience. Based on what Patient Ombudsman heard, in Throughout this report, we have provided the rush to shield our healthcare system from examples from actual complainants. I ask you to COVID-19, patients and their families were in put yourself in their shoes and think about how many instances set adrift, left to navigate it would feel if someone you cared about had shifting policies and public health responses been in a similar situation. I want to thank all alone without the knowledge, expertise or the patients, residents, caregivers, staff and support to do so successfully. Healthcare whistleblowers who had the courage to come providers were also left to develop their own to Patient Ombudsman. Reliving your approaches in line with public health directives experience is not always easy. and guidance, leading to a great deal of No one in Ontario’s healthcare system wants a inconsistency and uncertainty in any particular repeat of the scenarios we faced in the spring of situation. 2020. This will take strong leadership locally and In Ontario, long-term care homes were hardest provincially, and intense collaboration amongst hit in our healthcare system. .1807 residents different health providers and different levels of have died.1 On June 2, 2020, Patient government. Ombudsman launched a systemic investigation of residents and caregivers’ experiences in long- term care homes during the COVID-19 pandemic. That investigation is ongoing and Cathy Fooks, Patient Ombudsman 1 Ontario Ministry of Health Public Health Data. Data Source: The COVID-19 Ottawa Database (The COD). Ontario Ministry of integrated Public Health Information System (iPHIS) database, Health. https://www.ontario.ca/page/how-ontario-is-responding- Coronavirus Rapid Entry System (CORES) database, Middlesex- covid-19#section-0 (accessed August 27, 2020) London COVID-19 case and contact management tool (CCMtool), Patient Ombudsman 5 Honouring the voices and experiences of Long-Term Care Home residents, caregivers and staff during the first wave of COVID-19 Executive Summary Patient Ombudsman began receiving Ombudsman increased by over 370% when complaints related to COVID-19 at the compared to the same period last year. Patient beginning of March 2020. The tone of the Ombudsman received one or more complaints complaints shifted markedly in April 2020 as about 90 distinct long-term care homes that individuals contacted Patient Ombudsman had experienced COVID-19 outbreaks and 29 about their serious concerns about COVID-19 LTCHs that had not experienced an outbreak. outbreaks in long-term care homes. On April 28, Since March 2020, complaints to Patient 2020, Patient Ombudsman made a public Ombudsman about long-term care homes have appeal for complaints about COVID-19 outpaced complaints about other health sector outbreaks in long-term care homes and we organizations and have continued to increase. launched a systemic investigation into this issue on June 2, 2020. What Patient Ombudsman heard The issues that Patient Ombudsman heard Complaints to Patient Ombudsman about most frequently were: 1) visitation, 2) From March to July 2020, Patient Ombudsman infection prevention and control, 3) received 568 contacts related to COVID-19. communication, 4) quality of care, 5) staffing, 6) Complaints related to COVID-19 made up 48% discharges and transfers, 7) testing, 8) access to of all complaints we received. Of these treatment,