Family Councils in Long Term Care
.Exploring the potential benefits and constraints of family councils in long-term care
BCCPA Newswire, Family Councils, long term care, Residential Care, Senior Care
Aug. 14, 2017 Our understanding of how care should be delivered to seniors depends greatly on applied research
Through research, we know that family plays an integral role in senior care. We also know how the involvement of individual family members can determine quality of life for residents in care.
What we need now is a greater understanding of how family councils function, and their impact on long-term residential care in B.C.
The role of family councils
Composed of family and friends of long-term care home residents, a family council meets regularly to identify and resolve issues affecting all residents, plan activities, and support each other. A family council must be organized, self-led, self-determining, and democratic.
Family councils typically work with a staff liaison appointed by the care home to assist the council.
Family councils aim to facilitate communication, and promote partnerships between staff, residents, as well as families of residents not actively involved in the council.
“Care providers work very closely each and every day with family councils and individual family members of residents in care facilities,” said Daniel Fontaine, CEO of the BC Care Providers Association.
“Family members play a very critical role in helping maintain and improve the quality of life of seniors living in a care setting. A fully functional and effective family council has proven to make a difference in the lives of many of B.C.’s senior population.”
Family councils in British Columbia
B.C.’s Residential Care Regulation supports family councils by stating that long-term care facilities must provide an opportunity for family members to form a council which promotes the individual and collective interests of residents in care, and involves them in decisions that affect their day-to-day.
Gerontological Education, Research and Outreach (GERO) at the UBC School of Nursing released a province-wide report on family councils in the province.
Out of the 222 long-term care sites surveyed across B.C., 151 had family councils. Most of these sites were privately-owned, and located in urban areas.
Facilities with successful family councils reported improved peer support, constructive attitudes, and learning opportunities at their sites.
The report also highlighted challenges to initiating and sustaining a family council, including a lack of interest, poor understanding of a family council’s purpose, and an inconsistency in family attendance.
Findings over the years
Previous research tackling the subject shows the benefits of family councils on long-term care significantly outweigh its drawbacks.
A 2007 study that set out to determine the presence, characteristics and impact of family councils on long-term care in U.S. found they “provide mutual support, empower its members, and advocate change to improve the residents’ quality of life.”
The study, published in the journal Geriatric Nursing, also mentioned family councils contribute to a culture of mutual respect within a long-term care facility.
One of the greatest challenges of maintaining an active council, researchers found, is the fluid nature of membership. Family members are busy with work and their personal lives. And when a resident in long-term care passes away, their family withdraws from the council in most cases.
The study called for increased efforts to identify the role of the facility in supporting family councils, and stated that the involvement of family councils has the potential to improve relationships between family, residents and staff, reduce and address complaints, and improve quality of life for seniors.
Out-of-date for-profit long-term care homes had highest number of COVID-19 outbreaks
A new study of long-term care homes in Ontario shows that older facilities – most owned by corporations that have been paying out millions in profits to shareholders – were a significant factor in determining the likelihood of a COVID-19 outbreak.
These homes were most likely to have outdated design features, including shared bedrooms for up to four people and larger common areas where the virus could spread more easily among groups of people. While former Ontario governments passed newer building design requirements that removed shared and common rooms, there was no direction given to owners of the long-term care homes to implement them. Read more.
The COVID-19 pandemic has put a spotlight on the tragedy in long-term care homes that requires national attention and action. The Council of Canadians is calling on the federal government to work with provinces and territories on a national strategy that will make the homes safer for those who live and work there. To help build public pressure on governments, we are encouraging people to write letters to the editor of their local newspapers using the Council’s new easy-to-use tool.
Together, we can bring about the changes that are needed in long-term care homes across Canada.
Note: Based on your postal code, your letter will be automatically submitted to your 5 closest newspapers. You can use any of the talking points at the bottom of this page for your letter and be sure to add in your own, or send the form letter.
Image by Chelsea Flook
The Council of Canadians is calling on governments across the country to do more to support and protect both the residents of long-term care and those who work to care for them.
Jan Malek July 2020
I recently had the opportunity to participate in a video conference where long-term care workers from across the country spoke about their experiences with the COVID-19 outbreak in Canada. Their stories echoed with sadness and frustration as they described the tragedy that has transpired in many homes across the country.
To date, more than 8,800 people have died in seniors’ care homes across Canada from COVID-19, the majority of them in long-term care homes, according to numbers compiled by freelance journalist Nora Loreto. This number represents more than 80 per cent of all COVID-19 deaths in the country.
Canada’s shameful record of COVID fatalities in long-term care is the highest of all developed country in the world. A report by the Canadian Institute of Health Information found that “the proportion of deaths occurring in long-term care (LTC) is double the OECD average.” It is a national tragedy that cannot be ignored, especially as the threat of another wave of COVID-19 infections looms.
Workers in long-term care homes have unique insights on what is needed to avoid additional tragedies. Governments should be listening to their experiences closely – not to the managers or the corporate faces representing the homes – but the people who work and provide care in the homes (and whenever possible, the people who live in them too).
Here are some things I learned from long-term care workers:
* There was a lack of communication in the first wave of COVID-19. Many workers reported
difficulty getting information on infection rates and weren’t always made aware of who was
sick with the virus. This lack of information made it difficult to limit the spread. In some
provinces the health directives were unclear and poorly communicated within the homes.
One worker said they knew they should wear a face mask, but the management of the home
they worked in discouraged it because it would “scare the residents.”
* Many workers said they had to “beg” for proper personal protective equipment (PPE). Homes
are required to have a three-month supply in case of outbreaks or pandemics but many
workers found the supplies were old and degraded, or not substantial enough in quantity to
last longer than a few weeks.
* By far, the most repeated concern workers expressed was staffing shortages. Workers have
been sounding the alarm of staffing shortages in long-term care homes for years and they say
the pandemic made this crisis even worse.
To read more, click on IT’S TIME FOR GOVERNMENTS TO LISTEN TO WORKERS IN LONG-TERM CARE HOMES
The pandemic has highlighted worse outcomes and more deaths in for-profit care homes.
In May, Orchard Villa, a long-term care home in Pickering, Ont., made headlines for a bad COVID-19 outbreak. Just two months into Ontario’s lockdown, 77 patients in the 233-bed home had died. A report by Canada’s military revealed horrifying conditions, short staffing and neglect.
Some family members blamed for-profit ownership, arguing that COVID-19 had simply exposed, in tragic fashion, the impact of prioritizing profits in the operation of seniors housing.
Notably, Orchard Villa had been purchased in 2015 by private equity firm Southbridge Capital, adding it to Canada’s growing stock of “financialized” seniors’ housing — bought by financial firms as an investment product.
To access the article, please click on: COVID-19 Has Exposed the Perils of ‘Financialized’ Seniors’ Care
S. Ashleigh Weeden
July 8, 2020
“To realize the radical potential of the rural, we must leave behind outdated assumptions
that both rural decline and unchallenged urbanization are the twin edges of some inevitable
The first six months of this new decade have forced us to reconsider nearly everything: how we work, how we connect with each other and, with increasing urgency, the purposes, functions and futures of the structures and institutions at the core of our social and economic systems. The COVID-19 pandemic and the widespread reckoning with racism brought about by the latest resurgence of the Black Lives Matter movement are both happening in the shadow of a global climate emergency. The confluence of crises has forced our collective hand. These are not polite invitations to consider incremental change, they are radical disruptions that are shaking us by our collective shoulders and asking: What will you do now?
“……..we need to overcome the laziness of viewing the application of public policy
interventions through the lens of “urban versus everywhere else” and develop place-based
approaches that recognize the value of a diversity of both rural and urban communities and
the critical linkages between them.”
If we have learned anything in the first half of 2020, it’s that our public institutions and policy machinery can be far more nimble than we sometimes give them credit for. We’re doing things we didn’t think we could do before — from the universal income support of the Canada Emergency Response Benefit to a massive shift in public consciousness and engagement with anti-racism movements. Many of our assumptions about the way we do government can and should be re-examined. It’s not so much that the convergence of multiple crises has broken our socio-economic systems, it’s that they have exacerbated the cracks and crevices that were already there, with the kind of acute clarity that means they can no longer be ignored.
One such increasingly volatile fault line is the rural-urban divide. The tendency toward conflict between rural and urban communities, despite their many interconnections, long predates this unexpectedly chaotic year. Contributors to Policy Options noted the growing disconnect between rural and urban Canada in 2017. In 2018, the economic geographer Andrés Rodríguez-Pose drew direct links between such divides and their socio-economic and political consequences by calling the geographic distribution of growing populism “the revenge of the places that don’t matter.” Whether it’s the glaring ineffectiveness of the way we approach investments in rural broadband, the social and economic pressures linked to “disaster gentrification” or renewed awareness of the centrality of rural places in providing critical resources like energy or food (and the racialized dynamics of the labour of some parts of Canada’s agri-food system) — 2020 has surfaced serious sinkholes in Canadian rural policy.
Curious about the following questions?
– Do we value rural places?
– Is there a “right to be rural”?
– Who gets to decide what happens next?
– Realizing the radical potential of rurality
Read more by clicking on: The COVID-19 pandemic has exposed the “place blindness” that causes policy-makers to overlook the specific needs and potential of rural Canada.
Amit Arya July 16, 2020
Palliative Care has been lacking for decades in long-term care
Our overhaul of nursing homes needs to integrate a proper model for palliative care, which, shockingly, very few residents ever receive.
When the Canadian Armed Forces were called in to help Ontario’s nursing homes during the COVID-19 pandemic, they were shocked by the care and treatment of our nation’s seniors. Their report shared details that Ontario Premier Doug Ford referred to as gut-wrenching. Findings included:
“Poor palliative care standards, including no mouth or eye care supplies for dying residents.”
“Palliative care orders are not charted, are unknown to staff and therefore not often observed and residents’ documents are out of date.”
“Lack of pain treatment, including a patient with a fractured hip and inadequate palliation.”
What may also be shocking is that these findings are not unique to the pandemic. Even on a good day, palliative care is often utterly inadequate in nursing homes, and this needs to change.
In Ontario, the average resident of a nursing home dies within 18 months. For many of us, these are the places we will go to die, yet palliative care is not something people in these homes predictably receive. In fact, only six percent of residents in a nursing home have a record of receiving palliative care in the last year of life, according to a 2018 study by the Canadian Institute for Health Information (CIHI).
As Canada discusses reforming our nursing homes in the wake of COVID-19, it is important that we recognize the need for early, integrated palliative care. What this means is that suffering is monitored and then addressed in a timely fashion when required, not just in the last days or weeks. It means that we attend to the physical and emotional well-being of patients and their families while continuing to learn about what quality of life means for them. This care happens while patients are being treated for their underlying illnesses and continues after they or their doctors decide that treatment is no longer helpful, desirable or necessary.
Palliative care does not hasten death, as some people believe. It improves the quality of life that remains. And it should not be reserved for the last desperate hours or days, because suffering usually starts much earlier. Importantly, it can be provided alongside other treatments to sustain life, if appropriate.
Palliative care is built on frequent, deep conversations between health workers, patients and their family members. The goals of these conversations are twofold: to ensure that patients and families understand the medical situation and the healthcare team understands what is important to the patient in the time that is left. These essential discussions take time and trained health workers – something in short supply in the nursing home system.
There is a huge staffing discrepancy that exists between institutions. In my experience as a palliative care physician, those dying in hospice have a nurse who cares for four other patients. But those approaching end-of-life in nursing homes may have a nurse who cares for about 30 other patients in the day, or even 60 other patients at night. Imagine.
For decades, our nursing home system has not been meeting the needs of our seniors. Even worse, as the population has aged, resources haven’t grown to meet the demand. People in nursing homes are now much sicker and more medically “complex.” Often they have diseases with no cure, such as dementia or heart failure, lung disease or kidney problems.
Nurses and doctors in these homes are not always trained to recognize when a patient could benefit from palliative care to ease symptoms such as breathlessness, pain or agitation. Even if they are, they do not necessarily have the resources, time or knowledge to help. Too frequently, when a patient’s underlying condition predictably worsens, they are sent to the emergency department – putting them at risk for more confusion (called “delirium”) due to the change in environment and caregivers, and quicker loss of muscle mass because no one gets them out of bed. Improving nursing home care may allow more seniors to receive the care in the place they actually consider their home.
Effective and timely palliative care can help to recognize and treat pain in someone with dementia, which can decrease agitation and improve quality of life. For example, for a person with advanced lung disease, physicians can prescribe steroids and low-dose opioids to relieve shortness of breath, and antibiotics to treat predictable infections in the nursing home. For someone in the last hours or days, treatments may focus on ensuring comfort for the patient, and emotional support for their grieving loved ones.
And palliative care doesn’t just involve medication. It can include companionship for a person who is isolated, to give them hope and purpose in life. It can mean a receptive ear or spiritual counsel for family members, to address any feelings of guilt, anxiety or anger that they might have.
Palliative care allows people to live the best life possible until the end.
But all of this requires qualified staff who have sufficient time to evaluate the health of patients, meet with their families regularly, and adjust treatments as a disease progresses. It means knowing when to intervene and just as importantly, knowing when to stop.
So what needs to be done?
- Culture change. In many nursing homes, palliative care is equated with end-of-life care. But effective “21st century” palliative care means treating symptoms in a timely way, maintaining function and wellbeing for as long as possible, and ensuring treatments flow from ongoing discussions to understand what matters most for the patient.
- More staff. Staffing ratios need to improve in nursing homes for all front-line health workers. This will help them monitor symptoms closely, deliver appropriate treatment and allow the residents to personalize their daily routines and avoid monotony. Workers in nursing homes deserve the same pay as their counterparts in hospitals. Having more staff also permits a team approach including physicians, nurse practitioners, nurses, personal support workers, physiotherapists, occupational therapists, social workers, activation therapists (professionals who plan recreational activities such as movies and bingo), and spiritual care.
- Education and training standards. The care in nursing homes is highly specialized. We wouldn’t allow health workers to work on the labour and delivery ward without training in obstetrics, nor would we allow someone unable to perform CPR to work in an emergency room. How is it acceptable that nursing home staff are not required to have training and skill in the basics of palliative care? You may be surprised to hear that many medical students and residents – even those moving into careers in family medicine or geriatrics – do not have any required rotations in palliative care.
- Access to palliative care specialists. Although there will not be enough palliative care specialists in the near future to directly see all nursing home residents, specialists need to be more available to provide advice when a patient or family has concerns that are not resolved with initial attempts by the nursing home staff.
- Virtual care. Due to COVID-19, some nursing homes are now using virtual care to provide additional support from hospital-based specialists. This improves access and needs to continue beyond the pandemic.
- Accurate prognosis. When predicting life expectancy, even the best doctors and nurses can often be wrong. Very soon, cutting edge tools developed from “big data” could help health workers, nursing home residents and their families make better decisions and avoid overtreatment.
- Frequent conversations about current and future treatment. It is important for nursing home residents – along with their loved ones – to understand their condition well in order to choose the right treatments for them. Nursing home staff should offer treatments that relieve suffering, and if appropriate, treatments that prolong life without greatly sacrificing quality of life. But having these discussions, often centred around meeting with family members, requires skill, training and time.
Long-term care needs to fall under the Canada Health Act. To ensure equitable access and high-quality care, our federal government must implement a national long-term care strategy. This will ensure standards don’t vary based on where one lives, and include measurements to assess the quality of care in nursing homes. Important metrics include monitoring of pain and symptoms, advance care planning and goals of care discussions, psychological and emotional well-being of patients and their families, hospital transfers and place of death.
And if we get the model of palliative care right in nursing homes, we can learn to improve care for patients in other settings, too, such as homes and retirement facilities. As our population ages, more people will develop incurable diseases like dementia and require skilled care, including palliative care.
Our death-denying culture tends to push people who are aging and dying out of sight and out of mind. COVID-19 has had a devastating impact on long-term care residents and their families, and we’re seeing the tragic effects of this indifference. We must make sure those in the final phase of their lives have the best palliative care we know how to deliver. Reform and redesign of Canada’s long-term care homes need to include early, integrated palliative care so we can live the best lives we can – with the least suffering – until the end.
This article is part of the Facing up to Canada’s long-term care policy crisis special feature.
For related content, check out the IRPP’s Faces of Aging research program.
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Too many seniors in our province struggle to find publicly subsidized assisted living where they can be supported as they age. Amidst an affordable housing crisis felt across generations, the need to significantly boost the supply of subsidized assisted living is more urgent than ever before.
Assisted living is a type of supportive housing for people with moderate levels of disability who need daily personal assistance to live independently (meals, help with bathing, or taking medications, etc.). Publicly subsidized assisted living is part of B.C.’s larger home and community care system. There is also a large private-pay assisted living sector, where seniors pay entirely out-of-pocket and fees are completely unregulated. For-profit corporations provide the vast majority of private-pay units, while non-profits provide the majority of publicly subsidized units
Access to publicly subsidized assisted living units in B.C. dropped significantly — by 17 per cent — between 2008 and 2017. (Access is measured as the number of units for every 1,000 seniors age 75 and older).
Perhaps not surprisingly, the private-pay assisted living market has benefited as a result, as seniors and their families look for other options when subsidized care is unavailable. Between 2010 and 2017, 1,130 private-pay units were added throughout the province, while a mere 105 publicly subsidized units were added.
Private-pay care may be an option for some, but it is beyond the means of most low- and moderate-income seniors. Senior couples at the median (middle) income of $61,900 can scarcely afford a one-bedroom assisted living unit, which would eat up 58 per cent of their income. For seniors living alone, even a bachelor suite would require over 80 per cent of their income.
B.C. currently relies on private-sector financing of assisted living, which is more expensive than the provincial government financing new construction. This approach is a relic of the early 2000s when government refused to take on debt in order to build critical social infrastructure.
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