“Rationing” incontinence products in long-term care facilities (LTCFs) is not unique to the province of Quebec, Canada, where I live. An Ontario-based claimant in a class action suit against LTC giant Rivera told investigative news magazine W5: “Diapers in these homes are like cigarettes in prisons – they’re currency.”
When a student care worker blew the whistle on the issue in Quebec in autumn 2016, her Facebook post went viral and an investigation by the province’s ombudsmen ensued. The investigation outcome prompted me to write this open letter to the Quebec Minister of Health and Social Services. The letter and video are available in French here. Une version française de cette lettre est ici.
Open letter to Dr. Gaetan Barrette, Minister of Health and Social Services, Government of Quebec
March 31, 2017
Dear Dr. Barrette,
I was hopeful when the Protecteur du citoyen initiated an investigation into a young whistleblower’s charges regarding the rationing of incontinence products in Quebec’s long-term care facilities (LTCFs).
I know the torture of seeing an elder family member neglected, and I hoped the Protecteur du citoyen‘s investigation might lead to change. Thousands of other Quebeckers like me witness the ill treatment of people they love in Quebec’s LTCFs, both public and private, on an ongoing basis.
My mother, who lived with Alzheimer’s disease, entered a private LTCF on November 16, 2012. She declined more during her first two months in “care” than she had in the previous two years. Things deteriorated further over time. One day in September 2013, I noticed her incontinence “pad” was overflowing. It wasn’t the first occasion, nor would it be the last. Discouraged and dismayed by the indignities Mom was suffering, I took a picture, and later weighed the incontinence brief. Watch the video:
As I’m sure you know, Dr. Barrette, the average daily output of urine for a healthy adult who drinks about two liters of water per day is between 800 mls and two liters. That means, depending on her output, there was between 11 and 27 hours’ worth of pee in my mom’s incontinence brief when I visited her that day.
In response to my repeated requests for Mom’s briefs to be changed more often, I was told that she was toileted every two hours. That was not true. I regularly found Mom’s briefs either wet or soiled or both when I visited, regardless of when I arrived. Worse than the discomfort and humiliation she endured, poor hygiene practices caused my mother to contract urinary tract infections (UTIs), She was treated for the last in a series of UTIs just six weeks before she died on August 17, 2016. During the time I cared for her myself, she never had a UTI.
I was keen to participate in the Protecteur du citoyen’s investigation, and I spoke to a Protecteur representative at length on the phone. I recounted my story, including the incident above. The interviewer appeared to be listening, and then she asked: “But did the facility have quotas for the incontinence briefs? This investigations is about quotas.” I explained that we paid for my mother’s pads; there was no reason for the facility to ration them. I told her that Mom’s experience had nothing to do with quotas, and, in my opinion, had everything to do with lack of staff, lack of training, lack of care, lack of awareness, lack of resources, lack of compassion, and most important, lack of understanding of the needs of an elderly person living with Alzheimer.
The first paragraph of the Protecteur du Citoyen’s “Intervention report concerning quotas on incontinence products” states: “The purpose of the investigation was to ensure that the rights of the seniors lodged in these centres are upheld and that these residents are treated with dignity and respect.”
Where are “dignity and respect,” Dr. Barrette, when an 86-year-old woman’s brief is full to overflowing and weighs more than a kilo? Can you imagine how uncomfortable that would feel? How humiliating it would be?
The Protecteur du citoyen’s investigation and report miss the point, as does all the brouhaha around once-a-week baths, potato flakes versus “the real McCoy” or whatever other eldercare scandal of the day pops up. These are symptoms of much deeper problems: how we devalue our vulnerable elderly and those who live with dementia, and how compassionless and broken our so-called “care” system is. Pervasive and systemic overmedication, short staffing, a dearth of training, low pay, insufficient funding and a whole host of other deficiencies result in a toxic environment for residents, family members and workers alike.
Nurses and other front-line workers employed by long-term care facilities (LTCFs) don’t set out to deliberately neglect and abuse residents, or at least the vast majority don’t. Unfortunately, neglect and abuse are results of the system of which they are a part, and unintentional neglect and abuse are still neglect and abuse. The underlying issue is the absence of a culture of care, compassion and competence in LTCFs.
It’s time to stop defending the system, and start defending the people: the residents, their families, and workers who want to do the right thing and truly care for people instead of being forced to neglect them in what are essentially warehouses for the old, infirm and/or neurologically challenged. It’s time to ask better questions, listen to whistleblowers and others who speak the truth, and take immediate and effective action to fix what’s broken in Quebec’s LTCFs.
Advocates such as myself want to work with you to create positive outcomes, but we need you to listen and address our concerns; we need you to include rather than exclude us from the process; and we need you to work with us in a spirit of cooperation instead of against us as if we were the enemy rather than your constituents.
We need to do this now. For the sake of our elders, as well as our own.
I look forward to your collaborative response.
Susan Macaulay
Dementia care advocate
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My Alzheimer's Story 
Good for you for taking a stance on that, Susan. How horrible that ANYONE has to endure sitting in a wet or soiled pad/garment for that period of time—especially seeing that you are paying for them. My mother actually died of a UTI that went unrecognized and (from what I was told) caused her to have a bladder infection that got out of control and she had sepsis when she passed. It is just so unfair that our elders are treated in such a way. Unconscionable really.
I hope you have a good weekend. xo Diana
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“Unconscionable” sums it up nicely Diana.
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Hello Susan,
Great letter! It’s time we speak out, loud and clear, until our voices are heard.
Diaper quotas certainly had nothing to do with your mother’s most degrading situation. Infrequent and improper diaper changes are a fact of life today in our nursing care facilities and, sadly, reflect the quality of care being delivered to our precious elderly. I doubt any amount of money injected into our health system will make a difference until their is a shift in attitudes and improved nursing standards.
It is common sense that a wet diaper is uncomfortable. It is dehumanizing. It makes you feel cold too. Worse, infrequent changes promote skin breakdown and urinary tract infections (UTI) Anyone with a history of UTIs, especially, should be changed as soon as the diaper is wet. If ambulatory, the resident should be toileted every 2 hours. Family members keep insisting!
Unfortunately, in recent years, the trend in most nursing care facilities is known as “forced incontinence”, that being, rather than assisting someone to the bathroom the resident is diapered and instructed to “pee in your bed”. Increasing the manpower will not ensure change unless this common “trend” becomes an unacceptable practice!
Dr. Barrette’s notion that “urinary incontinence and adult diapers are a fact of life for seniors” is untrue and a gross insult to seniors. In most instances, incontinence in our nursing homes is a learned behavior, without options.
Health providers sharing Dr. Barrette’s attitude and false assumption have led to this culture of care. Premature diapering, a delay in answering call bells and inadequate toileting promote incontinence and UTIs…and serious consequences.
Throughout the years I cared for my parents, they were not diapered or told to “pee in their bed”. They needed assistance, especially during the night, but at ages, 100 and 101, they were not incontinent.
Awaiting a response from Dr. Barrette?
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“I doubt any amount of money injected into our health system will make a difference until their is a shift in attitudes and improved nursing standards.”
Sue T.: yes, I completely agree. And, while I understand there’s a dearth of resources in many circumstances, I don’t understand there being a dearth of common sense. I don’t expect I’ll be getting a response from Dr. Barrette. My experience is that people who thrive on power and control rather than finding solutions tend not to be responsive or interested in dialogue. Silence is just another power play.
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