By Peggy Edwards
We need change now!
Over the past several months of the COVID-19 pandemic, I have felt horrified, angry, worried, sad and ashamed at what has been happening in long-term care (LTC).I know you share these feelings, especially those of you who have loved ones living in long-term care residences or are caring for older family members at home. One friend told me, “The hardest thing is not being able to visit and comfort my mother.” Another friend was distraught because of the poor communication with the residence where his father lives. “I know they have the virus in the home, ”he said, “but I can’t get any information about how Dad is doing.”
Another woman who cannot visit her beloved husband of 55 years, is terrified that he will die alone and she will be unable to have the funeral that they had planned together before the pandemic separated them and threatened his life. Another woman who is the primary caregiver for her frail aunt, who struggles with dementia and incontinence, is both angry and worried. “After seeing this, I never want my aunt to go into LTC. But I am stuck. I know that I will be unable to care for her at home as her medical needs grow and her functional capacity declines. When she gets to the point of needing professional care and supervision 24/7, she will need a LTC home that provides the dignified, high-quality care and services she deserves.
As of June 1, 2020, the Public Health Agency of Canada reported coronavirus outbreaks in 971 nursing and retirement facilities in Canada, leading to
nearly 6,000 deaths. But what is most striking is that this represents 80 per cent of Canada’s known COVID19 deaths (although only one per cent of Canadians live in LTC homes).
The nightmare worsened when a damming report came from the Canadian Armed Forces, who had been called in to help in five long-term care homes in Ontario. They found that the homes were understaffed, and residents were living in horrible conditions. Members saw equipment used with both infected and non-infected patients without being disinfected, rotten food, cockroach infestations, residents calling out for help, missed meals, residents left in soiled diapers and linens, and COVID-19 infected patients put in the same room with those who were healthy. Overworked staff did not have proper personal protective equipment and often were ill themselves.
The people who live in long-term care are not numbers; they are beloved family members and friends, people who have made and continue to make valuable contributions to our communities and to society. They deserve to live their final years in a safe, home-like environment where they are treated with dignity, compassion and respect.
Why did it take a pandemic to make people and politicians finally see the real conditions in a broken system? Numerous reports had raised the alarm about problems in LTC for over a decade. But rather than acting on the recommendations for improvement contained in these reports, governments chose to undervalue old people and their caregivers, and to underfund and privatize their
Meaningful change now and in the long-term
Can we do away with LTC homes? The short answer is no. In Ontario, to qualify for placement in LTC, you “must have needs that cannot be met by a combination of caregiving/care in your home and/or community. ”As a result of this policy, Ontario adults are entering LTC when they are frailer and more in need of complicated medical and personal care than ever before. Almost all LTC residents require help with their activities of daily living due to physical or cognitive challenges (some 70 per cent have dementia).They are also older: in 2014,the average age was 83 years. Changes in longevity mean that the population over 85 will continue to increase dramatically. In fact, the number of Canadians over age 85 is expected to more than triple over the next 30 years.
Already, the demand/need for long-term care beds far outstrips the supply. The waiting list in Ontario for this level of care increased by 78 per cent from 2011 to 2019.The median wait time in the Ottawa region is now about five months. People waiting in the community (not in hospital) and those who prefer not-for-profit homes wait longer. These long wait times
(and now the fear of even admitting loved ones to
long-term care) are especially hard on unpaid
caregivers who struggle to care for their increasingly
frail loved ones.
We may not be able to do away with long-term care homes, but we can change the way LTC homes are built, maintained and run. The Ontario government has launched a Commission on Long Term Care. While this is a good thing, there are several needed changes that cannot wait until this commission has been completed. In a letter to the Premier, the Council on Aging of Ottawa identified four immediate priority areas for change:
• Passing of a Time to Care Act (or equivalent) that legislates minimum care standards with at least four hours minimum care/resident/day.
• Permanent increase in wages and benefits for LTC workers with active training and recruitment plans in place for personal support workers and other staff.
• Infection control practices and adequate personal protection equipment in place in all LTC homes for all workers and visitors, and continual testing and contact tracing for COVID-19 (and other) outbreaks.
• A plan for bringing back family caregivers into LTC as soon as possible.
In the longer term, the Council on Aging of Ottawa and other organizations have provided recommendations for change that include: increasing resources to the sector; renovating older homes that do not meet safety and design standards (and where residents often share a room and bathroom with three or four others);ensuring that enough affordable, high quality LTC beds are available to meet current and future needs; ensuring that all LTC facilities meet high and consistent standards of care and service; paying attention to at-risk seniors; respecting diversity and removing barriers that reduce access to LTC; valuing, training and appropriately compensating workers in LTC; developing systems and policies that ensure staff and residents are protected in the event of infectious disease outbreaks; and adopting innovative models that have been shown to be effective in Canada and other countries.
The Council on Aging of Ottawa envisions a future where “long-term care residents live in a safe, homelike environment where they are treated with respect and dignity.”
To realize this vision, we all need to advocate for values-based changes at both the systemic and individual/community level that are enacted, monitored and enforced, now and in the long-term. We need to ensure that the rights of older people are respected and upheld. Speak with your city councillor and members of parliament at the provincial and federal levels. Sign petitions from legitimate not-for profit organizations and elected officials that demand better care and working conditions. Support our essential workers in LTC. Visit the Council on Aging of Ottawa website at coaottawa.ca to see and support their position paper and statement of concerns.
We can also continue to demonstrate our love for our oldest, most vulnerable citizens. Despite the horrors that COVID-19 has laid bare, I marvel at some of the wonderful stories of how families and young people have reached out and found ways to stay connected with their loved ones in residential care. When my grandson Andrew and his fiancée Tamila postponed their wedding (which was set for October 2020),they realized that Tamila’s frail grandmother may not be able to participate a year later. So, the young couple decided to officially marry outside of grandma’s LTC residence. From her wheelchair and at a safe physical distance, her grandmother was thrilled to witness and participate in the wedding of her darling granddaughter. I am very
proud of Tamila and Andrew for the compassion, love and respect they showed. Tamila said, “My grandmother always wanted to witness my marriage and we wanted her to be there. The big party can wait. Getting married outside of my grandmother’s residence was lovely and it was the right thing to do.”
The time has come to make life in LTC homes a positive experience (as some are), and not like living in a warehouse where the old are too often forgotten. As Pat Armstrong, a foremost expert in this field, has said: “We need a system that puts life into years, not years into life.”
There will be more in this magazine about long term care in upcoming issues. I will be working with Editor, Patricia den Boer and the Council on Aging of Ottawa, to further explore what we as
aging adults and caregivers of older adults can do to ensure that our older and often most vulnerable citizens can live in a home and a system that puts life into years. We’d love to hear about your
concerns and ideas. Write to me at firstname.lastname@example.org
Peggy Edwards is a well-known writer and speaker on aging and health and is a co-author of The Healthy Boomer: A No Nonsense Midlife Health Guide for Women and Men, The Juggling Act: The Healthy Boomer’s Guide to Achieving Balance in Midlife, and Intentional Grandparenting: A Boomer’s Guide, all available at amazon.ca.