Bedsores, broken rib, pneumonia, C. difficile: Experts say dramatic decline of Joseph Brant patient is a symptom of a crisis in health care
Ken O'Leary could walk, shower, shave and feed himself when he arrived at Joseph Brant Hospital.
The 87-year-old Burlington man loved eating on a restaurant patio, hanging out in the backyard with his grandkids or watching a Toronto Maple Leafs hockey game in September 2021.
He was a happening dude," said his daughter Kelly O'Leary. And he thought he was; with his muscle shirts and his ball cap on backwards."
In fact, the former plumber was planning to go on a Caribbean cruise in November 2021 with Kelly and his wife of 68 years, Alice O'Leary.
That was on his bucket list," said Kelly. He said, I can't wait to get on that ship ... I'm going to be dancing so much that that ship is going to be rocking."
Ken never got to take the trip. He was bed-bound before the ship left port. He was admitted to the Burlington hospital on Sept. 29, 2021 for aggressive behaviour linked to dementia, resulting in a chemical restraint being used regularly. His physical decline was swift and deadly from pneumonia to C. difficile to bedsores, including one that left a hole the size of an avocado in his backside.
His last 18 weeks of life were hell," said Kelly. It's just heartbreaking."
Dramatic decline
The beginning of the end came on that Sept. 29 morning when Ken was taken to Joseph Brant. He had become threatening toward family members and police were called. A consultation report the day after he arrived stated that he believed people on the radio were saying mean things about him. It's not the first time he'd had hallucinations or been convinced people were out to get him.
There have been several medication trials made over the past couple months," stated the report. Although, initially it was found to be helpful, he has not been doing well of late."
Ken's wife and three daughters hoped his medications could be adjusted again and they could find a place to provide the care he needed. He had a history of strokes and doctors believed he had vascular dementia.
He tended to get more confused while in hospital, as a recent hip surgery had demonstrated. On his second day at Joseph Brant in September, he backed a nurse into a corner. He ripped off his diaper and demanded his clothes. He left his room looking for the family dog.
For severe agitation like this, a doctor at the hospital had ordered haloperidol every four hours, according to medical records provided to The Spectator by the family. Known by the brand name Haldol, the drug is an antipsychotic that doubles as a chemical restraint. Haldol is listed with restraints in Ken's care plan. He was also on the antipsychotic Risperidone.
Joseph Brant can't comment on Ken's case because of patient confidentiality, but it did provide general statements.
Restraint is only used in exceptional circumstances when immediately necessary to prevent serious harm to the patient, the care team, family members, or to other patients," Joseph Brant stated. When restraint is deemed necessary by the health-care team, the duration should be for as short a period of time as possible."
However, from that September day forward, Haldol was a regular fixture in Ken's medical records, along with his difficult-to-manage behaviour, paranoia and hallucinations, such as seeing snakes on the floor and claws under the door.
If there was any kind of issue it seemed like the answer was, Let's just give him some Haldol,'" said Kelly.
Her sister Nancy Wilder said, That seems to be their treatment of choice."
The Registered Nurses' Association of Ontario recommends any type of restraint be used as minimally as possible, and only as a safety measure of last resort.
More often than not it leads to more problems not less," CEO Doris Grinspun said, speaking generally.
Ken's medical records detail step by step how his health declined dramatically," as one doctor described it in a consult report from Jan. 25.
One complication led to the next," said Grinspun about Ken's case.
Twice he choked after being given the wrong diet the medical records show - once on Oct. 14, 2021, and once the week before. The records state it likely led to his first bout of what would ultimately be three cases of aspiration pneumonia. As a result, he was given antibiotics for the second time in October - the first was for a urinary tract infection.
By Nov. 1, he had C. difficile, which is an infection of the large intestine that causes diarrhea. The records state it was likely from the antibiotics.
In addition, he had to be physically restrained twice on Oct. 16 after he threw a chair at a window, attempted to get on the elevator to leave, acted aggressively toward another patient and was physically aggressive toward staff. He's described in the records as delusional" and having paranoia." It resulted in two Code Whites, which is used to alert staff to a real or perceived threat of violence.
Broken rib, bedsore to the bone
Days later, an X-ray found an unexplained broken rib, which is referred to multiple times in the records.
When these events occur, we check patients and staff for injury and conduct a team debrief as soon as possible to ensure that we address the emotional, psychological, and physical well-being of patients, staff, and family or other witnesses to the event," stated Joseph Brant.
Ken's medical records show that by around the beginning of November - just over a month after he arrived - he was bed-bound. He was also eating less than 1,000 calories a day and catheterized, meaning a tube had been inserted into the bladder to drain urine.
When you move less and your nutrition is less robust, both contribute to pressure injuries," said Grinspun.
By Dec. 3, Ken had a bedsore so severe at the bottom of his spine that it went to the bone. His family describe it as being a hole the size of an avocado - its actual measurements in the records were six centimetres by four centimetres by three centimetres. The records describe exposed bone and muscle, as well as bone infection.
He also had a bedsore on his left heel that was at an advanced stage in which it extends into the tissue beneath the skin.
These injuries progressed to this level despite wound care being regularly involved since they were first alerted Oct. 24 by staff on the acute-care floor.
Pressure injuries are absolutely preventable," said Grinspun, speaking generally.
By Jan. 26 of this year, a doctor wrote in a progress report that Ken's life expectancy was measured now on the order of weeks to short months."
Just over four months after Ken arrived at Joseph Brant, he left the hospital to go to a hospice. He died six days later on Feb. 12.
I'm sick to my stomach," said Grinspun. It's a tragedy."
Could happen anywhere
But Grinspun says it's not an isolated incident, as similar stories unfold all over Ontario.
This can happen in any one of our hospitals," she said. This is the tragic result of a system that is shortchanging or failing patients and the public."
When it comes to hospital-acquired bedsores alone, this is the third case The Spectator has written about since 2019 at Joseph Brant. All three seniors died soon after.
I would say Jo Brant is indicative of every hospital," said Hamilton wound-care specialist Dr. Perry Mayer. It's a systemwide problem."
Jo Brant's own statement on Ken's care demonstrates just how normal his experience was within the hospital system.
We have reviewed this individual case and determined that the patient received appropriate care," stated the hospital. No changes to our policies and procedures regarding the prevention and management of pressure injuries were required as a result."
A doctor in the patient records also backs up this view.
In my opinion, from an infectious disease perspective, I am unaware of how this could have been avoided," the doctor stated Jan. 25. I am very confident in the wound care that is currently being provided."
Joseph Brant said that it had developed a plan to improve wound care in May 2019 after 77-year-old Bob Wilson and another 82-year-old man ended up with hospital-acquired bedsores.
Really, what came of that was nothing," said Mayer.
Wilson's family says they recently reached an out-of-court settlement with the hospital.
With every tragedy there is always a lesson learned and teachable positive movement forward for change," said Wilson's daughter, Linda Moss, who has been active in raising awareness about the dangers of bedsores.
The O'Leary family brought up the past cases during a meeting on Jan. 26 with Leslie Motz, executive vice-president clinical and chief nursing executive at Joseph Brant. The meeting was recorded by the family and the audio provided to The Spectator.
It jumped off the page to our family because it was so similar," said Kelly.
But Motz steered them away from making comparisons.
Every patient is different," she said. So I caution you to not think apple equals apple."
The Canadian Institute for Health Information reports the number of episodes of hospital-acquired pressure ulcers went up steadily to 3,776 nationally in the fiscal year that ended Mar. 31, 2021, compared to 3,023 in the fiscal year that ended Mar. 31, 2015. That rise is despite many hospitals drastically reducing certain types of care over the pandemic.
The reason why it occurs is because of poor care," said Mayer. This is a medical health problem that is not being addressed. There's not enough dialogue about it. They don't want to talk about it too much because it reflects very poorly on the standard of care that's being delivered in the hospital."
Mayer is the medical director of the Mayer Institute in Hamilton, which specializes in diabetes including wound care. He says it's not unusual for him to see patients sent to the institute for what they are told are diabetic wounds but are actually hospital-acquired bedsores. He says he has complained multiple times about it to Joseph Brant and other area hospitals.
Their response is that they can't be perfect, but, in this instance, perfection is what's necessary," said Mayer.
Joseph Brant's statement says: Patients who are elderly, with limited mobility, medical comorbidities or cognitive impairment, are unfortunately, at high risk of developing pressure ulcers at any hospital or care home, despite best efforts to prevent them."
Mayer doesn't accept that hospital-acquired bedsores are inevitable and instead argues the wounds are really shocking when you are talking about a major hospital and publicly funded system."
It falls so far below standard of care," he said. Standard of care means if you suspect a patient is going to be immobile in their bed for any period of time greater than an hour, you need to implement some repositioning orders so that they get repositioned every couple of hours."
Ken's medical records show some staff recorded moving him regularly. Equipment like special mattresses and booties were used. One of his care plans recommended against waking him for care. However, a later plan made it mandatory to reposition him every two hours even if he was sleeping. The family say they rarely saw him repositioned - especially before January - despite being there for hours each day.
We can guarantee you that that did not happen," Wilder said in the meeting with Motz. My mother would be there for six hours and for most of that six hours she didn't even see a nurse."
In fact, they said, their mother was reduced to tears by how hard it was to simply get a glass of water for Ken.
Crisis of human resources'
A major part of the problem is staff shortages - Hamilton's hospitals alone have more than 700 job openings they can't fill.
We are in a crisis of human resources that I have never seen in my career," said Grinspun. If we don't tackle it, we will continue to see tragedies."
The family said they would have helped with their dad's care but no one warned them about the danger of bedsores or the need to move him every two hours. They say they didn't even know about the wounds at all until Nov. 23, which is in line with the medical records. It's also nearly a month after staff first alerted wound care - and despite records showing the family expressed concern more than once that their dad was in pain and something was wrong.
Dad has not been up to walk," Kelly flagged in an email on Oct. 24 to the unit's manager. Dad has complained for a week about his terribly sore feet ... There must be something going on."
The family told Motz in the meeting that Ken also constantly complained about having a sore backside.
Motz apologized for the communication breakdowns, which included emails from the family often being missed because their Gmail account couldn't get through the hospital's spam filter.
There's certainly been a lack of communication, a lack of engagement for family, a lack of medical updates and I'm going to take a little bit of a leap here - and this is a risky leap - but I'm going to say there seems to be also a lack of a cohesive understanding about your father's totality and his medical complexity," Motz told the family at the meeting. That's a failure of the health-care team ... Ensuring the family is part of the circle of care is so very important and it didn't happen or it doesn't appear to have happened."
For nearly two and half hours, the family described to Motz all the ways they felt their dad had been failed during his hospital stay, and written off because of his age and dementia. Their concerns included finding medication more than once in his room and having no idea which drug it was or how long he'd gone without it. His care plan stated medications were to be given under the supervision of a nurse and not to be left at the bedside.
Wilder described her dad as being left to rot."
I can't fix the past," Motz told the family near the end of the meeting. I think you are bright people who know that the past can't be fixed."
Wilder responds, No, the past can't be fixed, but somebody needs to be held accountable."
Limited hospital oversight
However, getting answers is difficult when there's no way to report hospitals as there are with other parts of Ontario's health-care system - such as long-term care, where a complaint triggers an inspection.
The hospital oversight system is very limited," said Jane Meadus, lawyer for the Advocacy Centre for the Elderly. Even the patient ombudsman is a very limited role that they have."
The family says they went to Ontario's patient ombudsman in December but never heard back until March - after Ken had already died.
The ombudsman received just over 5,600 complaints about public hospitals from April 1, 2019, to March 31, 2022.
Of those, 247 involved patients with dementia or delirium, although it's noted that this is likely an underrepresentation.
Joseph Brant, like many Ontario hospitals, doesn't have a dedicated care unit for dementia.
However, caring for patients with delirium and dementia is a regular part of our inpatient care programming," stated the hospital. Our staff and physicians are educated, trained and experienced."
However, it took nearly two months - until Nov. 18 - for Ken to be referred to behavioural support, despite aggression, uncooperativeness, confusion and agitation being in his records almost daily from the time he was admitted, along with regular Haldol use. Behavioural support suggested pain could be contributing to his acting out.
It took another three weeks - until Dec. 7 - for calming music to be added to his room.
Meadus questions why he wasn't placed on a Form 1 despite his exit-seeking behaviour. The medical records refer to the possibility of using this legal tool to detain him at the hospital if he stops agreeing to be there voluntarily.
It's a significant distinction because patients have rights in law when detained.
It doesn't matter that he's 87 and has dementia, he's still entitled to those rights and the oversight that something like the Mental Health Act brings," said Meadus. One of the concerns that I have is that patients like that are not being treated as psychiatric patients. When you are getting chemically restrained, that should only be occurring under the Mental Health Act."
Ultimately, Meadus says hospitals are not that well equipped" to care for those with dementia and difficult-to-mange behaviours, but end up with patients like that because we don't have a truly appropriate alternative."
You have this huge portion of the population that really doesn't have a good place for care and a good system for care," said Meadus.
Gap in care for dementia patients
Ken's case is a prime example of the gap. The behavioural health unit at St. Peter's Hospital turned down his application in early December because of the severity of the hospital-acquired bedsores and ongoing medical needs, the hospital records state.
Despite Ken's care being too much for a complex continuing care hospital, the family was still encouraged by Joseph Brant to fill out applications to long-term care.
Long-term care homes really can't provide often that high level of care," said Meadus. It boggles my mind how the hospitals think something like a retirement home could provide care or even a long-term care home."
The records show the family had earlier also been recommended to look into retirement homes despite the fact they're not medical facilities.
Retirement homes are tenancies," said Meadus. Someone who has needs like that should never be there."
It's an urgent issue considering census data released by Statistics Canada in April showed seniors aged 85 and older to be one of the fastest-growing groups in the country. As a result, it's crucial to learn from stories like Ken's as Ontario's health-care system faces this aging population.
The outcome could have been different," said Grinspun about Ken's case.
Joseph Brant CEO Eric Vandewall disagrees, saying, We have reviewed this case and have determined that the patient received appropriate treatment and care for his condition from our staff and physicians."
We are saddened by the recent death of the patient," he said in a statement. We have extended our condolences to the members of his family, and our dialogue with them continues as we try to answer their questions, provide them with factual and accurate information, and allow them to process their loss and bring closure."
However, the family remains bewildered how Ken went from packing his suitcase for a bucket-list trip to bed-bound in a matter of weeks.
This could have been prevented," said Kelly. Hopefully we get the word out so people are aware that this is an issue and it doesn't need to happen."
Joanna Frketich is a health reporter at The Spectator. jfrketich@thespec.com