SPOR EA - Cost Accounting for Long-term Care Beds - Problem to be Addressed - 3/10

 

2023 05 07 - I was looking after Mom on average 525 hours a month. I developed an artistic practice that fit with my daily routine of caregiving - the works were small, I could finish them quickly, and they brought life from the neighbourhood into our caregiving space. 

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The topic of this series of short articles is looking at evidence-based cost accounting for long-term care beds. The goal of this work is to be able to compare the cost of operating long-term care beds in institutional and home-based settings. The objective of this work is to be able to answer the question, "At what cost, to whom?"

PREAMBLE

My family decided to bring Mom home when she was aging out of her mental health group home (paranoid schizophrenia). We were not comfortable with the idea of Mom moving to a new institutional setting where we were not sure of the level of care or risk management she would receive. She had lived forty years in a group home setting, but now she had a mix of medical needs arising from old age, COPD, arthritis, and dementia in addition to her mental illness. Mom fit the definition of a frail elder with complex needs. She required 24/7 caregiving. She would not be able to fend for herself in a new institution and we were not confident that her needs would be adequately cared for by paid strangers.

We asked Mom's doctor about our decision to bring Mom home. We wanted to confirm our plans were realistic. He answered, "Yes, there are other families who are making similar decisions and plans." His only other instruction was to requisition a chest x-ray to check the status of Mom's COPD once she got moved home. Our family decided to bring Mom home and look after her ourselves.

Three months after Mom moved home I realized we were in a difficult situation. I was looking after Mom over 600 hours a month. My family did not know what was needed or what to expect. We were happy to have Mom home, and she was happy to be home. The cost of looking after Mom was being borne by our family and causing a month to month deficit to our family socio-economic vulnerability. 

I kept reading and hearing about how it, "...costs less to have our seniors at home." I noticed new programs being launched to bring more of the work of convalescence, long-term care and palliative care into home-based settings. I did not see any commensurate research or cost accounting of the real cost, in terms of time and materials, that was being transferred from institutional settings to family homes.

On top of the stress of overwhelming caregiving hours and declining family resources, I was also coping with a profound sense of betrayal and abandonment from my healthcare system. Although Mom had the medical care that she needed, our caregiving infrastructure was assumed to be provided by me and my family. I felt taken fore-granted. I felt taken advantage. I wondered how an equivalent operation in an institutional setting would be housed, staffed, supplied and administered.

I started to keep time and material records to understand the cost of operating Mom's long-term care bed. I started looking for evidence-based research on cost accounting for home-based long-term care operations. When I couldn't find any evidence-based research for home-based long-term care bed operations, I started looking for equivalent data for institutional settings and couldn't find any publications for these beds, either. I realized I couldn't find out how much it costs to look after our frail elders with complex needs, whether they are in an institutional or a home-based setting.

The magnitude of the issue hit home when I came across work from the University of Alberta, Department of Human Ecology. These researchers estimated the annual economic value of unpaid family caregiver time to be $97.1 billion, that family caregivers provided 5.7 billion hours of unpaid care (based on 2018 data). They analyzed data from Statistics Canada 2018 General Social Survey on Caregiving and Care Receiving. Their conclusions included an estimated 1 in 4 Canadians aged 15+ were providing unpaid family caregiving time. 

Note - This report only measured estimated time cost, it did not include material costs of operating home-based long-term care beds.

Eales, J., Fast, J. E., Duncan, K., & Keating, N. C. (2022, February 20). Family Caregiving Worth 97 billion.pdf. University of Alberta, Department of Human Ecology.

Based on my own lived experience and what I was learning from the field, there was no research using evidence-based data to quantify the work of caregiving for family and friends who cannot fend for themselves. For my purposes, I am including work across the spectrum of caregiving needs, from early minimal supports to 24/7 palliative care. I could find no systemic cost accounting research into the work provided by home-based family caregivers. At the same time, I could not find any equivalent systemic cost accounting for institutional caregiving settings, either. 

To be clear, there are not enough institutionally-based long-term care beds in our healthcare system to accommodate the growing population of aging Canadians who will need functional support to meet their needs for activities of daily living. In 2024, the Government of BC announced a $3.2 billion capital investment over ten years to create 5,354 long-term care beds. The estimated construction cost per bed is calculated to be 3.2 billing / 5354 = $597,683.97 per bed.

All Hands-on-Deck: An Urgent Call to Action to Ensure Care for B.C. Seniors. (2024). [Pre-Election White Paper]. BC Care Providers Association.

In 2017, Robyn Gibbard wrote a report to the Conference Board of Canada, titled, "Sizing up the Challenge. Meeting the Demand for Long-Term Care in Canada. Gibbard estimated the annual operating cost for one long-term care bed is $75,000 (all dollar values cited were in 2017 dollars). This breaks down to an estimated cost of $205 per day per bed in an institutional care setting. 

Gibbard, R. (2017). Sizing Up the Challenge. Meeting the Demand for Long-Term Care in Canada.

We don't know how the cost of operating long-term care beds is being calculated.

The problem to be addressed with this work is to answer the following questions:

1. What does it cost to operate a long-term care bed in an institutional setting in Canada? 

2. What does it cost to operate a long-term care bed in a home-based setting in Canada?

3. How does the cost of operating a long-term care bed in an institutional setting compare to the cost of operating a long-term care bed in a home-based setting?

4. How are resources supplied to support long-term care bed operations in institutional and home-based settings?

When the work of nursing and caregiving is transferred to family homes - hospital to home, aging in place, early discharge, aging in community - what happens to the budgets of those institutions? Do their budgets reflect the transfer of the cost of work to family home operations?

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I wrote a short piece about the relationship between my drawing and my experience of providing palliative care for my Mom at home. There was a moment, when Mom was putting on her coat to go sit outside and she got stuck with it halfway on. She started to lose her balance, I caught her, and as she gained her balance, I started to lose my emotional balance. She caught me.

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In this project we are looking at the issue of cost accounting for long-term care operations from three perspectives. We have a team of health economist researchers scanning research literature publications (Scoping Review); we have the lived experience case study of one family caregiving household who operated a long-term care bed for our frail elder with complex needs for the last 33 months of her life (Family Caregiving) and we have the comments contributed from a recent knowledge mobilization event on May 13, 2025 (Discussion Notes).

The problem to be addressed can be understood from all three perspectives, they show areas of overlap, and also bring additional depth and breadth to understanding the problem.

1. SCOPING REVIEW

SPOR EA (Strategy for Patient Oriented Research Evidence Alliance) funded a formal scan of research publications pertaining to evidence-based cost accounting for long-term care beds in Home-based and Institutional Settings. 

The Scoping Review identified a three key problems to be addressed: 1. the average age of BC seniors, the wait times to access an institutional long-term care bed; 2. the research gap addressing the issue of financial transparency in long-term care; 3. the need for a model and method for studying 

According to a 2023 report published by the Office of the Seniors Advocate BC:

○ Average age: 83 years

○ Wait time:

■ Average wait time is 101 days

■ VCH 65 days (lowest)

■ Northern Health 278 days (highest)

○ Length of stay (2022/23): average of 827 days (2.3 years)

and focused on a research gap:

● Reports like "Billions More Reasons to Care" and "Long-Term Care Financing: What's

Fair and Sustainable?" call for improved financial transparency in LTC.

● Lack of understanding fund allocation and spending within LTC facilities, hindering

care efficiency assessment.

● Lack of comprehensive cost accounting system makes it difficult to determine actual

care costs.

● Transparent cost accounting empowers patients and families, fostering trust and ensuring appropriate fund usage.

toward achieving the following objectives:

1. Develop a comprehensive and transparent cost accounting framework for institutional and home-based LTC facilities in British Columbia.

2. Using the framework structure, compare costs between institutional and home based LTC settings.

The longer a family operates a long-term care bed for their family member, the more their socio-economic vulnerability increases. Their family member is happy to be home and flourishes with family around. Family caregiving resources deplete over time.

2. FAMILY CAREGIVING

The problem to be addressed from the family caregiving perspective is threefold: 1. transfer of health care operations from institutional to home-based settings; 2. quantifying the cost of increased health care work carried out in family caregiving homes; 3. systemic erasure of the cost, in terms of time and material, incurred by families operating long-term care beds in their homes.

1. Transfer of health care operations to home-based settings:

The first problem to be addressed is the trend to move healthcare into family homes, effectively turning family households into healthcare operations without quantifying the amount of work, in terms of Time and Material costs, that are being transferred to families and out of institutions. Families are bearing these costs without adequate supports.

2. Impact of assuming the cost of healthcare infrastructure on family households:

The stress of over-extended family resources result in decreasing capacity to provide home-based caregiving. At the same time, care recipient needs increase over time, requiring escalating help to meet functional baselines for activities of daily living. The combination of stressed home-based resources and escalating care recipient needs results in increased socio-economic vulnerability to the caregiving household over time.

3. Systemic erasure of family caregiving work from health research:

A significant amount of healthcare work is being done by home-based family households. There is no commensurate visibility of this work in terms of evidence-based cost accounting research to quantify, measure and support the time and materials expended by these households. The work of family caregivers is essentially invisible to policy leadership, legislators, and health research priority setting.

The erasure of the work performed by family caregiving households continues as long as there is no evidence-based data demonstrating cost accounting for time and material expenditures. There is no accounting of the stress and duress experienced by families operating a long-term care bed, even as the health care system is depending on the operation of those beds as critical infrastructure.

3. DISCUSSION NOTES

The problem to be addressed from May 13 group discussion identified four key points of view:

1. What is the relationship between the social cost of long-term care (cost borne by our society for the good of all concerned) and the personal cost of long-term care (normal expectation of family costs for family or personal friends); how do we define and assign these costs to sustain caregiving operations?
2. How do we support patients and their families to ask fundamental research questions to address the growing crisis in sustaining long-term care operations and cost accounting associated with those operations?
3. How can we generalize a cost accounting approach to sustain caregiving operations across the spectrum of medical complexity and home-based caregiving (children with medical complexity, recovery and rehabilitation from catastrophic accidents and disease, frail elders with complex needs, dementia / cancer / stroke care, etc.)?
4. Where are the gaps in existing service / cost accounting models to sustain home-based caregiving? What policy alternatives can we implement to more effectively utilize existing resources?

CONCLUSION

In this article I have brought forward three perspectives to understanding the problem to be addressed in terms of cost accounting and long-term care.

From the perspective of health economy research, the problem to be addressed is cost accounting transparency. Cost accounting transparency would contribute to understanding the relationship between availability of long-term care beds, demand for those beds and resources needed to support operations of those beds. Cost accounting transparency would enable development of research models and methods to ensure evidence-based cost accounting data is available to measure, assess and allocate resources to long-term care operations whether they are located in institutional or home-based settings. Cost accounting transparency could provide a basis for innovative response to the crisis of long-term care bed availability and operational support.

From the perspective of family caregiving, the problem to be addressed is lack of adequate resources and supports to sustain family caregiving households. Families assume the work of operating a long-term care bed because a member of their family (or a friend) is no longer able to fend for themselves. The demand on family caregiver resources increases over time and are not adequately supported by the healthcare system. At the same time, the needs of their Care Recipient increase over time, exacerbating stress on already depleted resources. Cost accounting transparency could provide a basis for assessing costs of operating a long-term care bed in a home-based setting and ensure a fair distribution of resources to sustain the operation.

From the perspective of the group attending the May 13 Knowledge Mobilization event, the problem to be addressed is a lack of substantive discussion and social / system engagement to understand what costs of long-term care are the responsibility of the healthcare system, and what costs are the responsibility of individual citizens. Cost accounting transparency would demonstrate patient-oriented leadership in setting health research priorities. At present the cost of home-based caregiving operations is invisible to the healthcare system. Leadership to address this issue must come from the people whose lives are deeply impacted by this gap, the families who operate long-term care beds in their homes for family or friends who can no longer fend for themselves. We will not know where the gaps in service are failing home-based family caregivers until there is evidence based cost accounting research to map the flows of resources to long-term care bed operations.

From an institutional perspective, the lack of cost accounting transparency is not confidence building for families who need to put their vulnerable family member into institutional care. There is no access to quality assurance, risk management or resource allocation in terms of the care encounters their family member will experience in relation to the operation of their long-term care bed.

Research into this problem is going to have to be led by people who are not embedded in a health care system that benefits from the invisibility and erasure of the time and materials expended by family caregiving households.

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Mom was sitting in her chair and I read the blog post I wrote about the drawing of the red crow and how we were going to manage our caregiving mission, to let, "nature take its course".

SPOR EA - Cost Accounting for Long-term Care Beds

funded by Strategic Patient Oriented Research (SPOR) Evidence Alliance

 Table of Contents

Introductory - Follow up / Thank You - 0/10

Introduction - Context - 1/10

Introduction - Project Development - 2/10

Problem to be Addressed - 3/10