‘If you’re dying, don’t come here:’ Families of dying patients describe ‘horrendous treatment’ in a Burlington hospital

Carol Briand died alone in Burlington's hospital.

Her daughter Tara Cordeiro and son Thomas Briand were reeling, unable to believe no family had been there for their 70-year-old mom's final moments despite their requests to stay by her side. It was an unthinkable end to what they saw as a disastrous two months at Joseph Brant Hospital (JBH). Their distress and dismay were so extreme that it was noted in the medical records.

It was at this moment they say a doctor they'd never met before came into the room and stood on the other side of the hospital bed with their mom's body in between them. To their shock, they say he launched into a defence of the care she received on the palliative care ward.

My mom's dead body is right there and you're trying to have a debate with us about the Ontario health-care system," said Thomas. Is that really the time or place?"

The doctor's summary described the situation differently in the medical records: I did express my condolences to the family and listened to their grievances. It was a pleasure being involved with this case."

It's the kind of disconnect the family described throughout their experience with end-of-life care at JBH from March 11, 2022, until their mom's death on May 3.

They couldn't have fixed my mom, but I think the way that it unfolded could have been a hell of a lot better," said Thomas. It's the things that occurred while we were there that were troublesome."

Saving lives by default'

Carol's story shows the gaps that occur in a palliative care system short of beds, staff and training despite a national framework centred around the vision that all Canadians with life-limiting illness live well until the end of life."

How it's delivered is often in a very patchwork fashion," said Dr. Amit Arya, director-at-large of the Canadian Society of Palliative Care Physicians and an assistant clinical professor at McMaster University. I think it's a failure of successive governments to have failed to realize that our population needs are shifting."

As the country's population ages, the demand on palliative care increases. The Framework on Palliative Care in Canada published by the federal government in December 2018 noted that 90 per cent of the country's roughly 270,000 deaths each year are from chronic illness such as cancer, heart disease, organ failure and dementia. It predicted the number of deaths to rise to 330,000 by 2026 and 425,000 by 2036. Improving palliative care is key to ensuring those with chronic disease live in dignity and comfort with access to appropriate care that respects their wishes.

Unfortunately, our health-care system is geared toward saving lives by default," said Arya. We also have a death-denying culture. Everyone is often geared toward saving lives rather than thinking about how to live well in the final stage of life for the patients that I serve."

The shortcomings in palliative care can have devastating consequences for patients and their families. John McConnachie spent four of his last six weeks at JBH more than two years ago and his Burlington family says it has left them raw to this day.

It's not just the death we are dealing with," said his daughter Diane Johnson. It's the horrendous treatment he got in that hospital."

The 75-year-old retired industrial electrician was dying of cancer when he went to JBH on Dec. 23, 2020, for what his family thought would be a short stay to get his blood sugar under control.

Instead, they describe weeks of invasive tests, inconsistent care and having to be constantly on high alert" to advocate for John during his hospital stay. They allege bedsores, humiliating falls and issues with blood transfusions.

John was discharged on Jan. 22, 2021 - the family says at their insistence - and died at home on Feb. 4, 2021.

I looked up the definition of palliative and it focuses on the patients and their families," said his wife Valerie McConnachie. But that didn't happen for John."

Joseph Brant can't speak specifically about these cases because of patient confidentiality but provided a general statement about the issues raised.

We would like to express our deepest condolences to the families of the patients," stated JBH. We take any concerns expressed by our patients or their families very seriously, and make every effort to respond, address and learn from them. We are committed to identifying new and better ways to provide care and communicate with patients and families."

Helping to improve quality of life'

When palliative care is done right, it can make a huge difference," said Arya, speaking generally and not about these two cases.

The focus of palliative care is aimed at mitigating unnecessary suffering and helping to improve quality of life for people who are living with a serious or complex illness," he said. A large part of our job is supporting families and helping people to understand what lies ahead and what their treatment options are so that they can make informed decisions before a crisis hits."

But providing that care can be challenging in a health-care system that is chronically short of staff and beds. Arya says Ontario has two palliative care beds per 100,000 population compared to four in the United Kingdom. The national framework states that too few health-care providers specialize in the field.

We are far short in terms of the number of specialized palliative care beds," said Arya. Short staffing is definitely a big issue."

The shortages make it even more important that palliative care is available no matter where a patient is in the hospital. But the framework flags that Canadian doctors and nurses report varying levels of training and comfort in this type of care.

We don't necessarily think that palliative care should only be provided in a palliative care unit," said Arya. Every health worker should have the basic skill set to provide palliative care across the system but, unfortunately, that's not the case."

JBH says its teams are capable of providing many types of care, including palliative.

Each team has specific training and is experienced in communicating, educating and supporting patients and families in their care," said the hospital.

Both families described being in need of the kind of support that palliative care provides when their loved ones were admitted to hospital.

Carol had been living independently, healthy and working at Denninger's Foods of The World at Burlington Centre just three months before she went into the hospital. Her family doctor described her as thriving in the medical records.

Up until then, she would be working and driving and living a normal life," said Thomas. You would never guess my mom was 70 years old if you saw her."

She had a bout with shingles in October 2021 and never seemed to get better - this would prove to be a red herring that confounded doctors.

By January 2022, she was no longer working because she couldn't stay on her feet due to increasing pain, numbness and burning. Medical records show her doctor reached out to JBH for an urgent referral.

By February she was falling down, and by March she was rapidly losing weight, unsteady on her feet and unable to care for herself to the point that her kids eventually had to make sure someone was with her 24-7.

She went to the emergency department at JBH three times in just over one month - Feb. 1, March 2 and March 3. The last visit was by ambulance after her son found her stuck on the floor in her downtown Burlington apartment for hours after a fall. But she was discharged each time without a diagnosis.

It was kind of totally dismissed, which was a little frustrating," said Thomas.

JBH says the emergency department has access electronically to medical records so staff can see how often a patient has visited and what was done before.

Carol had an appointment with a neurologist in February who scheduled magnetic resonance imaging (MRI) for April.

On March 7, the family doctor contacted JBH's General Internal Medicine Rapid Assessment Clinic (GIMRAC) stating in all capital letters: COULD YOU PLEASE PUT HER ON URGENT LIST" after Carol's daughter said she demanded something be done to stop her mom's rapid decline.

But four days later on March 11, Carol was brought to the emergency room for a fourth time following a fall - again by ambulance - and admitted to JBH.

My mom never left the hospital after that," said Thomas.

The McConnachie family had an equally frustrating journey before John was admitted to JBH for the last time.

It started out in the emergency department, where he was diagnosed with cancer on Oct. 14, 2020. The family says the doctor who came to inform them had the wrong patient file and they had to point out the mixup.

That pretty much alarmed us," said Valerie.

The hospital said it has a system in place that usually prevents this type of mistake.

Ultimately, Valerie remembers the doctor saying, It's cancer, it's progressive, it's terminal and he'll be treated on a palliative basis."

She says they didn't get a definite diagnosis of what type of cancer, which held up treatment for weeks. John was listed in medical records as having metastatic lung cancer, which meant it had spread to other parts of his body.

His family says he was in and out of hospital before getting radiation treatment at Juravinski Cancer Centre in December 2020 after having it cancelled twice before that. They say JBH sent him home after the treatment to recover and rest up for immunotherapy.

There was no guidance on what does it look like when you release dad from the hospital and bring him home," said his daughter Sarah McConnachie-Shaw. There was really no communication on what should we expect. What should we prepare for, what did we need to have at home, what should we be monitoring?"

JBH says patients usually get information about what to expect and followup plans in a discharge package provided to them.

At home, John's blood sugar spiked on Dec. 23. Medical records show it was the side effect of a medication the family says they hadn't been warned about when he was discharged. They reached out to GIMRAC, which they said sent them to a clinic that didn't provide insulin shots, so they ended up at the emergency department.

By the time we got to the hospital, he was hallucinating," said his wife.

It was the start of a hospital experience that the family says compounded their grief to the point they are telling their story in the hope it will allow them to move on.

This will help us in the healing," said Johnson. Hopefully, it will help us get past this."

More focus on palliative care

When palliative care is done right, referrals are made early. The national framework aims for palliative care to start right at the time of diagnosis instead of exclusively in the last weeks of life.

Palliative care is often provided late in someone's disease journey," said Arya, speaking generally. Often we conflate end-of-life care with palliative care ... We know that suffering does not just start at the end of life. Suffering often starts much earlier when you're living with a serious illness like cancer or heart failure."

Arya gives the example of how palliative care should work: The oncologist will treat the cancer and we will try to treat the person."

Waiting too long to involve palliative care can result in patients receiving treatment that is counter to their wishes, futile or simply inappropriate, said Arya.

We are paying for more expensive and unnecessary care where people are suffering and have a poor quality of life because they have delayed integration of palliative care earlier on," he said. It doesn't make any sense that we're not focusing a lot more on palliative care."

Neither the Briand nor McConnachie family feel Carol and John lived well in their final months.

Carol went from the emergency room to a medical ward at JBH.

Nobody knew what was wrong with her," said Cordeiro. They kept telling us that she was like a medical mystery. None of her tests were showing anything. Nobody could figure out what was going on. They just submitted her for a battery of tests - blood tests, X-rays, CAT scans, MRI and various types of scans."

It was a lumbar puncture, also known as a spinal tap, that finally led to a diagnosis of small cell lung cancer and paraneoplastic syndrome on March 25, 2022 - two weeks after she was admitted. The uncommon syndrome was the reason for her debilitating symptoms. It develops in people with cancer, affecting eight per cent to 20 per cent of patients. It can be caused by hormones or proteins secreted by the tumour or by the immune system attacking the brain, spinal cord, peripheral nerves or muscle along with the cancer.

By the time she was diagnosed, Carol was mostly paralyzed, losing her short-term memory and often confused.

This was a woman who went in there and could essentially walk," said Cordeiro. Then she couldn't feed herself, couldn't scratch her own nose, couldn't even press the call button ... She was paralyzed but she could feel ... She would think she was falling when she was lying down ... If she was lying down, she'd think she was standing up. The collection of symptoms were just unreal. She could tell me things that happened many, many moons ago, but her short-term memory just evaporated."

Cordeiro called it traumatizing for the family to watch Carol wither," which they say was made worse by the inconsistent care she was receiving.

First, the family described a revolving door of doctors. One would treat Carol for a time and then another would take over, starting from scratch. None of them seemed to be working from a shared plan.

It was just like being passed along from doctor to doctor," said Thomas. You have to repeat everything again, even though it's all in the medical records ... It was a horrible waiting game while we're watching my mother just simply deteriorate."

JBH said doctors at most Ontario hospitals rotate weekly or on a set schedule.

This requires that patient's care be handed over," said the hospital. JBH physicians use a structured handover tool to help ensure the continuity of care during these transitions. In addition, the patient's medical record and treatment plan is always available to be reviewed by the care team."

John's family described the same continuity issues with the doctor rotation, blaming it for what they saw as unnecessary tests and delays to discharge.

It was just this constant roller-coaster," said McConnachie-Shaw. Once a week when we thought dad would be discharged because the sugar levels were under control, they turned around and said, No, we're not discharging him until the next doctor takes a look.'"

John's discharge report lists extensive investigations," including a bone marrow biopsy, a gastroscopy, a colonoscopy, CT scans and ultrasound.

The tests just kept happening and were under the advisement of the doctor on rotation," said McConnachie-Shaw. It felt like a real big disconnect ... Isn't there any continuity?"

She went on to say: We didn't even get a conversation to say, Why are we ordering all these tests? What's the benefit to dad?'"

JBH says doctors recommend diagnostic and therapeutic procedures according to their clinical judgment as informed by their own expertise and practice guidelines."

The plan of care is developed based on a shared understanding of the patient's goals of care and expectations," said JBH.

The family raised their concerns with the hospital in an email on Jan. 3, 2021.

We are frustrated that each new doctor on the floor does not know John's full history so as to provide accurate attention and medications to him," stated the message from Valerie. It is a concern that we have heard from no one in palliative care during this visit as it was our understanding that this care was where we could turn to for help during the hospital stay."

John should have been in palliative care all along, said McConnachie-Shaw.

All the things that they did for a man who was terminally ill," she said. Test after test, that wasn't going to provide him any sort of longevity of life or provide him with any benefit."

Nobody seems to care'

When palliative care is done right, patients spend their final days where they are most comfortable. Arya says 90 per cent of Canadians want to die at home, but 60 per cent end up dying in hospital. A goal of the national framework is to move from palliative care being predominately delivered in hospitals to home.

Our system does not provide people the care that they want," said Arya, speaking generally. Canada is one of the world leaders among all OECD countries in terms of deaths that happen in hospital."

John's family describes being desperate to get him home as they watched him decline at JBH.

He developed a bedsore on his backside that his family says was as painful as his cancer.

The bedsore was a nightmare, he was constantly complaining about it," said Valerie. We had to bring to their attention that there was a problem."

The family says they were so concerned that the bedsore was not being taken care of properly that they asked for a date to be put on the bandage so they'd know how often it was changed. John's daughter described the wound as starting to rot.

It's not getting any better," said McConnachie-Shaw. It's getting infected. Nobody seems to care. There doesn't seem to be any kind of ability to make this any better."

JBH says it has an organization-wide pressure injury prevention and management program.

JBH has a multidisciplinary pressure injury committee that meets regularly to review the evidence around best practices and to adjust our policies and procedures accordingly," said the hospital. Our performance is reviewed monthly."

John needed frequent blood transfusions and the family felt they had to oversee that as well.

They just started the transfusion and then left," said McConnachie-Shaw. It was up to us when we could see that the arm was swelling and something was wrong to go to the nurse's station and have them come check it."

JBH says its administration of blood products is in accordance with standardized provincial guidelines.

Policies and procedures are in place to ensure that transfusions and intravenous therapy are performed safely," stated the hospital.

The family says they once came in to discover John's arm was severely bruised.

From his shoulder to his elbow on the one arm is completely black, like an eggplant," said McConnachie-Shaw. When you ask them what happened ... they don't have any explanation."

JBH said spontaneous bruising is very common in patients who are being treated with anticoagulant medication or who have underlying illnesses.

While this can be distressing, in most cases it can be managed conservatively," said the hospital.

John developed a blood clot in his left arm so notices were put up to make staff aware.

There were warning bandages on his arm physically and signs on the wall behind his bed," said McConnachie-Shaw. But yet they would come in and totally disregard this. We just felt like we were on high alert because it didn't feel like people were paying enough attention."

The family raised concern that his peripherally inserted central catheter (PICC) line to give access to veins wasn't being cleaned as often as it should be. He was losing muscle mass, so they say they asked repeatedly about physiotherapy.

One day I went and he was absolutely naked," said Valerie. I said to the nurse, What's happening here?' She said, That's the way he wanted it.' He would never have said, Keep me naked in bed.'"

They say John's sheets weren't changed regularly and plastic tips removed before injections were all over the floor and bed.

Cleaning and linen changes are done on a scheduled basis as per hospital standards, and as required based on the patient's needs and clinical condition," stated JBH.

The family also questioned why it took days to have an issue with John's bowel movements addressed, which they say left him in severe pain. JBH said it has a bowel care management protocol to help prevent and manage issues arising in this area.

We're there to visit our dad, keeping him company," said Johnson. But we felt like we were medically managing him ... It was horrific. We were on high alert all the time to make sure that the care providers were actually caring for our dad. Otherwise, if he had no family support, I'm sure he would have just been left in that room to rot and end up passing away."

Carol's family also felt like they had to be there to ensure she was taken care of properly. Thomas described arriving at the hospital one day to find her door closed and his paralyzed mom alone inside the room screaming. The medical records state Carol was feeling anxious and asked for the door to be closed.

My mom was put right near the nurses' station so people can see her because she couldn't use the call button," said Thomas. I was shocked that this could happen ... To have the door closed on her, it was very traumatizing for my mom and for me going in there seeing it."

JBH says it has modified accessible call bells for these circumstances, but the family says to their knowledge Carol never had a call bell she could use.

The medical records note Carol's family was upset about a lack of communication, questioned the care plan and worried about her declining mental health.

Cordeiro expressed that she feels that patient has fallen through the cracks,'" a social worker stated in a note from March 30.

John's family describe similar feelings, pointing specifically to three falls he had in hospital from the time of his diagnosis in October until his discharge in January.

Falls that involved some humiliation," said McConnachie-Shaw.

One fall was in the emergency department and the family says they weren't told about it until they asked about visible injuries to John's knees and legs.

Another fall happened when he went for an ultrasound and needed to go to the washroom, said the family.

He was desperate and he had an accident and was found on the floor," said Valerie. It was very humiliating for him."

The family says he also had a fall while trying to get to the washroom in his room during an earlier hospital visit.

JBH says it has an organization-wide universal falls prevention strategy.

The strategy is reviewed routinely to ensure that it reflects current evidence-based best practices," said the hospital.

Another issue John's family say they raised during one of his hospitalizations was medication that they felt left him too groggy.

Basically he was like a zombie," said Valerie. I had to get him changed back so that we could at least have a conversation."

Carol's family also had issues with medication changes. The medical records describe Cordeiro as being very upset ... stating patient is over sedated."

Finally, John's family had enough and said they insisted on taking him home on Jan. 22, 2021 - nearly one month after he arrived - so he could spend his remaining time with his wife, two daughters and two granddaughters.

We said, we're taking him out of this hospital," said Johnson. They have completely forgotten about patient care."

Even during discharge the family felt abandoned. Valerie says a porter would only help take John as far as the lobby, leaving her on her own to get him to the car.

I had to ask a passerby to help," said Valerie.

JBH says its teams work with patients and families to ensure a plan is in place for safe transportation home.

We will be exploring ways in which we can make this transition as seamless as possible," said JBH.

Death-phobic society'

When palliative care is done right, life is lived with dignity. The framework calls for the best possible quality of life right up to the end."

They may have suffering, feel scared, alone and helpless in the system, and often with good palliative care, we can help with alleviating all of those concerns," said Arya. We can help with living a life with dignity."

But the framework flags that access is uneven across the country and too often not available until all other medical interventions are exhausted.

We live in a death-phobic society where unfortunately people don't like talking about death and dying," said Arya. I think there's a perception that when people are living with a serious life-limiting illness, that they cannot have a good quality of life, spend time together with their family members, contribute to society. I would say through my practice ... that's far from the case. I think that this is actually a big systemic failure and a waste of money ... the way that we haven't looked at palliative care."

Both families feel Carol and John never got the palliative care that would have made it easier to cope with their illness and death.

I don't know if this is a result of our province's medical system and the way that it's built or a disconnect - like a one-off," said Thomas. Is it something that happens frequently?"

With no treatment working and Carol's quality of life rapidly declining, her family made the difficult decision on April 19, 2022, to transition her to end-of-life care.

Her medical records state: A palliative care ward bed became available on April 21 and Carol and her family accepted the bed offer."

Except there was no bed available. Carol was not moved to the palliative care ward where her family had been told they could spend quality time together, including overnight visits and bringing in the family dog to say goodbye.

Instead, Carol spent six of the last 13 days of her life on a unit that cared for patients with behavioural issues. The unit was described in the medical records as having no television or phones - a particular problem for someone who is paralyzed. Visiting was limited, especially for children, because of the behaviour of the other patients.

Family wants to bring in dog and grandchildren," stated records from April 22. Doctors worried about bringing in grandchildren ... due to behavioural patients."

From day one, the medical records show doctors advocated for Carol to be moved to palliative care.

I do wonder if moving to a different floor and not having the family visits could be contributing a bit to the grief," stated a doctor's report from April 22. Therefore, if she is moved to the palliative care unit and has more family nearby, I would like to see if her anxiety and distress settles a bit before starting her on a scheduled antipsychotic."

The records show Carol had been calling for her dog as far back as April 12, and her fourth grandchild had been born on March 27 so the family was eager for them to be able to spend time together. They were eventually given permission for a weekend visit but the family didn't feel they could bring young children to the ward.

We were pushing to say every day, When is my mom going to be moved,'" said Thomas. We started to basically look at private clinics because I did not want my mom's final days to be on this ward. It was disrespectful. When you have your family in this type of environment, it makes the final days very painful."

The medical records show Carol was scared and anguished to be on this unit despite her delirium. Her children describe other patients walking freely in and out of her room.

Patient distressed that she has been put in the garage with wayward people walking around,'" stated medical records from April 25.

The next day the records state: Patient expressed that she does not feel safe and noted sadness."

Her kids' pleas to have Carol moved also appear multiple times in the records.

Cordeiro echoed patient's distress and concern with unit," stated a record from April 26.

It goes on to say that Cordeiro asked about transfers to more than one hospice and contacts for patient relations.

When no hospice bed was available, Cordeiro expressed that she feels that family have been backed into a corner with no options," stated the medical records.

Cordeiro said it took complaints from multiple family members before Carol was moved to palliative care on April 27, 2022 - six days after she had been sent to the unit and seven days before she died.

At times, limited in-patient bed availability requires moving patients to a different unit due to lack of available space," said JBH. Like many hospitals across Ontario, bed availability has been particularly challenged during the COVID-19 pandemic. We make every effort to ensure that patients are moved to the right place as soon as possible."

The family says the transfer to palliative care didn't bring the dignity and comfort they hoped to Carol's final days.

When my mom went to the palliative ward, there was zero conversation with me and my brother," said Cordeiro. 'Nobody came and sat with us and said, Hey, this is what palliative looks like.' I learned more about the stages of death through a hospice nurse that I follow on Instagram ... We were going into all of this blind, making all of these decisions."

As an example, they describe the trauma they went through over flip-flops on whether their mom should stop being fed because she was at risk of breathing in food and fluid into her lungs.

Both Cordeiro and Thomas say they were told May 1, 2022 - two days before their mom died - by the weekend doctor on duty that it was time to withdraw food and drink.

This doctor said, Look, we need to not give your mom any fluids and not give her any food because potentially she could aspirate and in that sense she'd be drowning and ... drowning is probably one of the worst ways for a human to pass,'" said Thomas.

The siblings felt they had to make the impossible decision between their mother drowning or starving to death.

It was quite a traumatizing choice to make," said Thomas.

The siblings describe being alone when they told Carol she would no longer be fed. They say it was the second time they had to deliver painful news on their own - the first was her cancer diagnosis.

She said, Well, if you don't feed me, I'm going to die,'" said Cordeiro.

That was an emotional discussion we had," said Thomas. We were all crying together."

JBH says it has spiritual care, social work, biomedical ethics, and patient experience staff available to assist and support sensitive conversations.

Our teams are available to support families during times of grieving and loss as well as to provide resources to assist them during these difficult times," said JBH.

After making such an agonizing choice, Thomas said he was shocked to come into the hospital the next day on Monday, May 2, and discover his mother being fed.

When he questioned what was going on, he said the specialized health-care worker told him, It doesn't have to be all or nothing. There is a middle ground,'" said Thomas. It is just a total lack of communication from doctor to doctor."

JBH said the care plan for each patient is included in the medical record and is available for review by health-care providers at any time.

Meanwhile, the siblings say they were pushing to have family stay by their mom's side 24-7.

We kept asking for the sleepovers every day that she was in there," said Cordeiro. We were told, Usually closer to when she's going to pass.' We just kept getting pushed and pushed and pushed."

JBH blamed the pandemic saying, Visitor restrictions were more stringent out of necessity to protect the health and safety of our patients, visitors and staff."

On the morning Carol died, she was described in the medical records as very deeply asleep" when checked by a nurse at 7:30 a.m. on May 3. During another check, the nurse said she noticed Carol's breathing was slow and shallow and notified her son.

Thomas said he got the call at 9:13 a.m. and was at the hospital with his sister by 9:35 a.m.

As we're approaching my mom's room, suddenly I see two nurses standing in front of her door," said Thomas. On the door is a picture of a dove."

I think they were supposed to stop us before we entered," said Cordeiro about the nurses. But because they weren't paying attention, I went in and clearly saw my mom."

The medical records state Carol was found without vital signs at 9:20 a.m. and the time of death was listed as 9:24 a.m.

I fell to the ground and I was hysterical and I was crying," said Cordeiro. She was by herself."

A social worker wrote in the medical record at 10:52 a.m. that Cordeiro and Thomas were both extremely distressed, especially due to not being permitted to stay over with (the) patient last night and not being present with (the) patient for her death. Both expressed dismay with patient's end of life experience."

Thomas still questions why their request to stay by Carol's bedside was refused.

I know it's not an exact science but don't tell me that people in palliative care - nurses and doctors - don't know the signs," said Thomas. We didn't know how my mom had passed - if she was calling out for anybody, if she was awake."

The patient experience office at JBH told the family in an email on June 24 that their concerns were taken seriously and helping to improve the way the hospital cares for patients and families, particularly around communication and family visits.

I have been asked to pass our condolences and a sincere apology for the experience described," stated the message. Clinical staff have been encouraged to discuss patient/family wishes when considering these important moments and facilitate family presence when possible. Staff have had the opportunity to understand your experience and reflect on the impact that decisions have had on your family during this difficult time."

JBH said it continues to engage with patients and families to improve their experiences.

We are proud of the work that our staff and physicians do every day to provide high-quality patient-centred care," said the hospital. As an organization committed to continuous learning and improvement, we recognize that this work is never finished."

In August, Carol's family received a bill for $10,450 for a semiprivate room that she had no insurance to cover.

Please do not add insult to injury on this horrendous experience at the hospital by crippling our family further with this invoice," Cordeiro wrote to JBH.

The fee was waived in the end for what JBH described as compassionate reasons.

Thomas said his family decided to speak out because they want to avoid other families going through the same thing.

This is not the experience you want to have," said Thomas. If you're dying, don't come here. Joseph Brant is not a place to come and die."

Joanna Frketich is a health reporter at The Spectator. jfrketich@thespec.com