‘There were empty beds’: Families of patients who died say Toronto General’s renowned eating disorder clinic is failing those who need it most

Cassandra Szorady was on the front steps of Toronto General Hospital. She had just been discharged from six weeks of intensive, in-patient eating disorder treatment, into a pandemic - a world starkly different from when she first went through the hospital doors.

It was April 2020, and the 34-year-old was unsure where to turn. The hospital did not provide followup support, her friends and family said, forcing Szorady to lean on her community in Durham Region as she struggled to keep the 30 pounds she had put on in treatment. Her health soon deteriorated.

She was getting thinner and thinner before our eyes," said Denise Macnab, Szorady's friend from church.

By October, Szorady was cycling in and out of hospital for heart palpitations. The number on the scale sank: 126 pounds, 90, 86. Her mother said she appeared weaker. The potassium pills she relied on for nutrients became too big for her to swallow, and her brain was getting foggier.

Macnab begged the cardiac nurses and doctors at an Oshawa hospital to transfer Szorady back to Toronto General Hospital (TGH) for treatment. I said, You need to understand she has an eating disorder, and she's at death's door. What can you do?'"

After several calls to TGH about Szorady's declining health, Macnab said she received a voicemail from the hospital: a nurse said Szorady was known to the program, but her admission wouldn't be prioritized despite her dire condition.

She would just have to wait her turn," Macnab recalled the nurse saying.

Szorady died a few months later, on Feb. 22, after a heart attack. She left two young daughters behind. Her grieving mother, Cammie, has several questions: Why didn't the hospital prioritize her daughter's admission if they knew she was severely ill? Why was she last discharged without additional support? If she had been readmitted, would she be alive today?

Now my daughter is dead," Cammie said. She should be here, and my grandkids don't have their mom now."

Szorady is one of at least two patients who have died allegedly awaiting readmission to Toronto General Hospital's renowned in-patient adult Eating Disorder Program since 2019. These deaths are the first on the wait list in over a decade, said several sources with knowledge of the program, and come on the heels of significant overhaul to the program's leadership, treatment and operations.

Szorady died as beds sat empty in the program. This has prompted questions about why she was not readmitted when her health deteriorated, and about how the wait list is managed at Ontario's largest publicly funded eating disorder program.

The major redesign of the program, rolled out in May 2017, has met with backlash from senior staff and patients. Five psychiatrists who worked out of the program left shortly before the changes were cemented in 2019, going to other publicly funded programs or to work in the private sector. Other staff, including dietitians, social workers, nurses and occupational therapists, have also left as recently as July of this year, sources said, and the services being offered have dwindled.

The Star spoke to more than a dozen sources about TGH's eating disorder program, including patients, physicians and advocates. Some spoke on condition of anonymity, for fear of retribution.

Sources described the program as crumbling, amid alleged mismanagement, at the expense of chronically ill patients. Dr. Susan Abbey, the psychiatrist-in-chief at the University Health Network and current head of the eating disorder program, defended it against these criticisms to the Star, saying differing opinions on how to best care for eating disorder patients are to blame for staff's high turnover and complaints from within the program.

Public health officials have warned that eating disorders are on the rise in youth and adults due to the pandemic, with wait lists ballooning across the Greater Toronto Area.

Admissions for eating disorder care at the Hospital for Sick Children increased 55 per cent from July 2020 to March 2021. Eating disorders have the highest death rate of any psychiatric illness, roughly 10 per cent. The illness often develops in adolescent years and can become chronic, with risk of relapsing as Szorady did. It often exists alongside other mental illnesses like post-traumatic stress disorder, addiction and other behavioural disorders.

Sources who spoke to the Star expressed deep concern for the future of Toronto General's program, run out of the University Hospital Network (UHN) - once the largest in the country and a renowned training hub for psychiatrists, dietitians and nurses interested in eating disorder care. Some patients say they now avoid the program, treating it as a last resort, while advocates fear that if these issues persist at the program, more people will die.

Access to eating disorder care in the GTA for adults is limited. Only two local hospitals - Credit Valley in Mississauga and Toronto General - offer publicly funded in-patient treatment beds reserved for the most sick: those considered significantly underweight, or patients with severe complications.

Credit Valley Hospital's program has four beds, and has limited criteria for admission based on body mass index (BMI). Toronto General's program, on the other hand, has 10 in-patient beds, half of all beds in Ontario, and looser admission criteria. It also accepts referrals for more complex patients than other programs in the region, said Abbey, its director. Wait lists often exceed three months at both programs.

Eating disorder care usually has three tiers: in-patient; day hospital, with therapy and supervised meals five days a week; and outpatient, a less intensive model focused on recovery in the community.

Before the recent changes at Toronto General, those referred to in-patient treatment were quickly assessed by psychiatrists and triaged based on need and severity, sources told the Star. Patients went on the wait list, often for months, before they accessed treatment, due to limited beds. The program's psychiatrist would book followups with patients' family doctors if needed while they were on the list, to ensure they remained stable.

Once in treatment, care consisted of therapy, meal planning and monitored meal times. Patients were discharged once at a healthy weight, and transferred to a day program with lunch and dinner eaten at the hospital five times a week. If a healthy BMI of 20 was maintained for a month, patients then entered a relapse prevention program for six months.

But sources say that's no longer the case. Since the program's redesign, patients said followup care after discharge had diminished.

In a statement to the Star, Alexa Giorgi, a spokesperson for UHN, which oversees Toronto General, said the program is not funded to allow ongoing medical management while on the waiting list," and the program is not funded to allow continued medical care following discharge."

The program receives around $3.1 million annually from the province, according to data provided by Ontario Health. It received an additional $4.5 million for 2020-22 to support a program for community eating disorders prevention, promotion and early intervention.

In an interview, Abbey said the program changed after an external review in 2016 of its overall operations. She said before the changes, the program's psychiatrists took on a lot of work and fulfilled various roles, including meal supervision - roles she considers to be outside their scope of practice in the program.

Under the program's redesign, Abbey said the goal is to involve other non-doctor professionals, like psychologists and occupational therapists, to oversee what has become a program focused on providing enhanced cognitive behavioural therapy (CBT-E) - a treatment hailed as one of the most effective for eating disorders, involving creating individualized recovery plans for patients with a therapist.

Abbey said there is no gold standard for in-patient care" of eating disorder patients.

UHN has not replaced the roles of all five psychiatrists at the program, some of whom worked part-time, since their departure, Abbey said. Instead, she took on the role of medical director of the program, while Dr. Genevieve Proulx, an Ottawa-based psychiatrist, divides her time between the Ottawa Hospital and Toronto General.

Abbey said staff left due to differing opinions" on managing care.

I think whenever you have change, some people like it, and some people don't."

An overhaul of the waiting list triage system was part of the changes, done in consultation with the hospital's bioethics team, spokesperson Giorgi said. Patients are now admitted on a first come, first served" basis, with two exceptions that are fast-tracked: pregnant patients, and those with Type 1 diabetes, which raises the risk of complications.

UHN would not confirm whether Szorady was on the wait list when she died, citing privacy. But her family and friends say Szorady was given the impression that her referral had been sent to the program in November 2020, about four months before her death. In a Jan. 9 text to her friend, another former eating disorder patient at TGH, Rebecca Graham, Szorady said she had yet to hear back from the hospital about an assessment date.

In a call a few weeks before her death, Szorady told Graham she was still awaiting a response from the hospital, Graham said.

She said I'm not going to make it,' and I said, No, Cassie, you've got to.'"

Until early July, the program's description on UHN's website stated if the patient's condition changes significantly while she or he is waiting for consultation, please notify us, as new information may allow us to increase the patient's priority." It said the program makes every effort to see very ill patients quickly." These statements have been deleted as of mid-July, after inquiries to UHN by the Star about the program and Szorady's death.

Abbey defended the timing of the website changes to the Star, saying UHN's Centre for Mental Health web pages are problematic" and an overhaul is ongoing.

As Szorady was looking to access treatment at Toronto General in late 2020, patients inside the unit around that time reported the program was not at capacity, and a few beds sat empty. Giorgi confirmed that before the pandemic, the program's bed occupancy was about 85 per cent. During the pandemic, the average fell to 75 per cent.

There were empty beds," Graham said, and my friend doesn't need to be dead right now."

Szorady is not the first to die while allegedly awaiting readmission to TGH's eating disorder program.

Aimee Moore, a 39-year-old Stratford, Ont., woman who had battled severe anorexia and bulimia since age 13, died April 8, 2019, almost four months after her referral went to TGH. A letter obtained by the Star, sent by UHN's patient relations department to Moore's mother, Patricia, confirmed she was on the wait list when she died. Moore was 31st in line.

Moore's condition had become more complex as she struggled with binging and purging food and was unable to reach a healthy BMI following two admissions to Credit Valley's full in-patient program in 2017 and 2018. She was losing weight rapidly, and the lack of nutrients affected her cognitive abilities. Patricia said her daughter needed to be in a controlled environment, to become stable enough for a fuller form of in-patient treatment.

Patricia said her daughter's referral was sent to TGH in January 2019 by an eating disorders psychiatrist at Credit Valley, Dr. Randy Staab. The referral included recommendations that Moore enter a partial in-patient program, only offered at Toronto General.

After the referral, Moore contacted Toronto General the following week for updates, and was asked to call in another week. When she did, Patricia said her daughter was told to check in another two weeks. During the third call, Patricia said her daughter was told to not call back again, but that she would be called in the fall with an assessment date."

Patricia said her daughter started losing hope. The experience was frustrating, she said, and far different from the previous care under former program director, Dr. Blake Woodside, one of the five psychiatrists who had left the program, and who had run it for 25 years. In past admissions to Toronto General, including in 2005 and 2007, Patricia said communication about her daughter's assessment would be consistent and prioritized due to her critical weight and health.

I saw that as the weeks and months went by, and Aimee's health and strength deteriorated to such a great extent, she gave up hope for the treatment she had earnestly desired," Patricia wrote in a letter to UHN's chief medical officer, Dr. Brian Hodges, in May 2019, shortly after her daughter's death.

Perhaps there was more that Aimee could have done to hound the receptionist, intake co-ordinator, psychiatrist, or someone ...

Should a patient have to hound and beg for life-saving care and treatment?" Patricia added.

UHN responded to Patricia's email four months later, in September 2019, after consulting Abbey and Marion Olmsted, psychologist and then-co-director of the program, among others within the hospital network. It defended the program's new first come, first served" wait-list policy, stating it prioritized fairness and equity of access."

But Aimee's mother said this new system was not communicated to her daughter. She acknowledged her daughter's case was more severe than others, and that she had been admitted to multiple in-patient units over the years, but said that should not restrict access to life-saving treatment.

In her last months, Patricia said her daughter was determined to re-enter treatment. She wanted help to improve her health, but could not do it alone no matter how hard she tried," Patricia wrote to Hodges.

Near the end of her life, Moore admitted herself into palliative care. She was skin and bones," Patricia recalled. How she could walk was only by the grace of God."

A few months after Moore's death, an external review was conducted of Toronto General's eating disorder program by Workplace Ethics at UHN, in collaboration with the Centre for Addiction and Mental Health. Abbey said the review was not prompted by Moore's death, but by mounting complaints from staff inside the program about how it was being run after the redesign.

Part of the review summary, obtained by the Star and dated November 2019, homes in on management issues and the need for internal structures to change for the program to continue to be viable." It underscores the importance of measuring the maintenance of improvement after discharge" of patients, as well as relapse rates.

Olmsted, the co-director and a 30-year veteran of the program, left her leadership position in February 2020, though she remains an active member of the College of Psychologists of Ontario. In an email, Olmsted said she retired from the program early due to COVID-related concerns.

After the November 2019 review, COVID-19 arrived and upended health care across Canada. Shortly before, Cassandra Szorady was navigating what would be her last admission to Toronto General's program. As with Aimee Moore, Szorady's friends and family expressed concern over what became a lengthy, confusing and painful process for readmission.

Virginia Miles, a friend of Szorady's from church who owns a business helping Canadians navigate the health system, said Szorady faced some initial resistance from the program after a referral from her family doctor in late 2019, forcing Miles to advocate repeatedly for Szorady to be admitted.

Everybody at the church, her friends, relatives said that if she would not get into this program she likely would not live," Miles said. Miles also accompanied Szorady to the intake appointment to explain the gravity of her deteriorating health.

Szorady had been battling a chronic eating disorder since her teens; her main diagnosis was bulimia. She also struggled with addiction and borderline personality disorder, said her mother, Cammie. Friends and family described Szorady as caring and outspoken. She is someone who understood her illness well, they said.

After weeks of advocacy by Miles, Szorady was admitted to Toronto General's program in early March 2020, just before COVID-19 forced an abrupt provincewide shutdown.

When Szorady was released, she spoke of concerns with the care inside the eating disorder unit and shortcomings in the program, Miles said, adding some were unrelated to the pandemic.

Szorady complained of lack of staff on the 10-bed unit, and said many of the personnel present in her prior admissions had left. In response to complaints about staffing, Abbey said some personnel had been redeployed to COVID wards.

Szorady was also concerned with a newly implemented model in the program. The rapid refeeding approach, adopted partly out of research published in 2015 from Johns Hopkins University, focuses on feeding patients a few thousand calories a day to achieve a healthy weight, at a rate higher than previous standards.

Rapid refeeding has been deemed safe by research and effective in reducing readmission rates. It has been adopted by other programs outside TGH, including Credit Valley. The 2015 research, however, stated it's helpful to have a transition for patients to a partial hospital program after the treatment, and that group therapy is a key component.

Szorady complained of having to eat large amounts of food she wasn't used to, Miles said. If she didn't comply, Szorady feared being kicked out.

Giorgi, spokesperson at UHN, said rapid refeeding has significantly restored the weight of patients treated in hospital, and has shortened the stays for some in the in-patient unit. This in turn allows us to treat more patients."

When Szorady was released in April 2020, Miles hoped she would be transitioned into followup day hospital care, but Toronto General's day program had closed due to COVID-19, and a virtual option wasn't available until September due to staffing issues, Abbey said. By contrast, Credit Valley reinstated its day program virtually within the same week that it was closed.

As of July 2021, a full day hospital program had yet to be reinstated at Toronto General. Instead, the program's website advertises intensive outpatient treatment" as one service offered, with no mention of any virtual day hospital treatment.

Giorgi, the UHN spokesperson, said the program began offering enhanced cognitive behavioural therapy (CBT-E) virtually in September 2020, and has been treating as many patients as it did pre-pandemic. It added virtual nutrition counselling and daily meal support to the program in April - a year after the day hospital program shut down. Giorgi said early experience with the virtual program suggests that it may be uniquely helpful in assisting people with eating disorders to make changes that they are more easily able to maintain in daily life."

But sources inside Toronto General have expressed concern that the virtual program in its current form is not enough for some patients, stating it leaves a gap in care for the more chronic cases. Other concerns were raised about changes to in-patient care, which include less group therapy than pre-pandemic times.

Literature on CBT-E and eating disorders suggests for the treatment to be effective, underweight patients need to undergo therapy for 40 sessions over 40 weeks. Patients recently discharged from the in-patient unit said this type of intensive therapy and followup did not take place during treatment, or after discharge.

Abbey said given the challenges of COVID-19, it's too early to tell the day program's future. We want to keep what's good, and have something for people for whom this isn't helpful."

As Toronto General closed its day hospital program during the pandemic, other programs in the region saw unprecedented demand.

Speaking to the Star in May, Dr. Randy Staab, alongside Daniel Tziatis, clinical manager of the mental health program at Credit Valley, said the Mississauga hospital's wait list reached the longest it's ever been" over the previous nine months. The in-patient program's wait list is at least four months, while the day hospital has a five- to six-month wait, double what it was pre-pandemic. Staab added no one has died on Credit Valley's wait list in 14 years.

Body Brave, a Hamilton-based non-profit clinic offering treatment and support for people with milder eating disorder cases, was seeing up to 250 people a month as of May, said Dr. Karen Trollope-Kumar, a family doctor and medical director of the program. Pre-pandemic, the clinic saw about 40 patients a month.

Trollope-Kumar said apart from the pandemic, part of the increased demand is tied to reduction of services at hospital-based programs like TGH. All of a sudden, we were getting people ... off the waiting list for the day hospital program at UHN."

Trollope-Kumar added that she believes the current Toronto General program that has been reinstated in place of the day program is not intense enough for patients who previously relied on it, and GTA patients are left with Credit Valley as their only option.

The UHN program has changed, because it used to be one of the main places we'd refer to for seriously ill patients," Trollope-Kumar said. But definitely there's been a major change in everything, you know, the psychiatrist, Dr. Woodside is no longer there, and after the pandemic, many of the staff" were redeployed. (Woodside sits on Body Brave's advisory board.)

The program just crumbled, and it's really tragic."

In an email to the Star in February, Giorgi said while the region has seen an increase in demand for services to support child/adolescent treatment of eating disorders," UHN did not see the same increase in demand for adult treatment programs."

However, in an interview with the Star in July, Abbey said referrals to the eating disorder program have increased by 250 to 300 per cent since March. She did not say whether the in-patient unit has reached full capacity.

And yet only two-thirds of beds at Toronto General's program were filled during the pandemic, on average. Despite the wait list, Giorgi said the program has struggled to fill beds because they were sometimes turned down by patients still concerned about the risk of COVID and/or other challenges related to COVID."

But some patients told the Star they've waited months to be admitted, despite the empty beds.

One former patient, Erin Fenlon, 21, who struggles with anorexia and Type 1 diabetes, was last discharged in May 2020 to no additional support, she said, and subsequently relapsed. Like Szorady, her health deteriorated, landing her in and out of emergency departments and prompting her family doctor to send in a new referral for readmission at TGH's in-patient unit.

I was basically discharged from 24/7 support into this pandemic world that I left when things were still normal," Fenlon said, adding she had no support except for weekly therapy. I can understand why that derailed my recovery."

Fenlon said she waited about seven months before she was readmitted in March, despite the severity of her illness, and despite diabetes making her a higher priority based on TGH criteria. Three months after her referral was sent in, Fenlon said she spoke with Proulx, the program's psychiatrist, who initially discouraged her from re-entering.

She felt that because I had been there before, there was nothing more they could do for me," Fenlon said.

During the call with Proulx, Fenlon said she felt extremely discouraged about recovery. I felt like this failure, I felt ashamed for being in this position."

The Star requested an interview with Proulx through UHN, but it was not granted.

Fenlon eventually contacted Ontario's Health Ministry, and met the associate minister of mental health and addictions, Michael Tibollo, over Zoom in February, a few days before her readmission. At the time, Fenlon said she had heard from patients inside the program that it was not full, and she complained to Tibollo about her long wait.

Tibollo's office confirmed to the Star that they met, and said Tibollo requested that the ministry look into the issues. Tibollo's office did not respond to questions on whether an investigation was launched.

Giorgi said referrals of patients are assessed by a nurse service co-ordinator at the program with support from a nurse practitioner and physicians. She did not answer direct questions about why patients like Fenlon are waiting months, citing patient privacy. Abbey added that patients admitted into the program need to be well enough to take part in discussions about what their goals are." She said others who are severely malnourished benefit more from medical care outside the program and through their family doctor.

She denied that patients with a history of readmission are being deterred from re-entering.

While Fenlon was in the program, she said the care did not help her aside from her reaching a healthier weight due to the rapid refeeding. She said group therapy hours were less than prior years, and access to the psychiatrist was limited.

Eating disorders are so much more than just the weight and the food aspect," Fenlon reflected after her discharge. Of course people are going to then be needing treatment again within a year or less even, because they're not getting any support psychologically."

Fenlon added there was some staff turnover while she was admitted, including an occupational therapist and two dietitians who left, and said nurses were often understaffed. Before her discharge, Fenlon said she asked to talk to a diabetes dietitian, but said that was refused.

The Star spoke with other patients who described similar experiences. Gabe Tavares, 39, of Toronto had received care for their anorexia on and off at Toronto General since 2001. They were last admitted in February, but left three weeks early due to what Tavares called poor care. Tavares said they were initially reluctant to re-enter the program, but felt stuck as the wait list at Credit Valley was much longer.

Tavares said they experienced several moments of distress in the patient unit. They described locked bathrooms to prevent patients from vomiting, and said bathrooms can only be accessed with the help of a nurse - often hard to pin down. There are times where I've had to wait more than half an hour just to go to the washroom."

Since discharge, Tavares has been relying on the Modified Eating Disorder Assertive Community Treatment (MEDACT) program at Toronto General, a team of three clinicians that assist patients in their own homes or communities. But as of July, Tavares said they were told services with MEDACT will be reduced, as an occupational therapist will be leaving the program, and that role will not be replaced. In response, Giorgi said services are being maintained at their current level."

As for Fenlon, she is now back on the wait list at Credit Valley. She said she joined the list before her admission to Toronto General, partly because she worried she'd never get a call from the Toronto hospital.

When I was (inside Toronto General), so many people were on the wait list at Credit Valley and were treating TGH as this pit stop in between," she said. People are viewing it as a last resort."

Asked about the negative experiences patients described, Abbey said others have recounted more positive ones.

I think it's very hard for some patients, because they've had many, many admissions and their way of doing things," Abbey said. She added other patients have said the old program was too restrictive in admissions, and that longer stays before the introduction of rapid feeding made it difficult for more patients to access beds.

It's very clear that the field has moved on, that there are other potential approaches to treatment that we had to change," Abbey said. She added COVID-19 restrictions at the UHN level are also to blame for recent difficulties.

Patients, physicians and advocates say eating disorders are commonly misunderstood, by the public but also in the health system. Training is often limited in medical school, said Trollope-Kumar, even among family doctors like herself.

I think there's still a lot of stigma around eating disorders, a lot of myths," she said. A lot of people still think of eating disorders as a lifestyle choice, but they're actually complex brain-based illnesses that have physical and mental components."

Trollope-Kumar said programs in Ontario are chronically underfunded and were experiencing long wait lists before COVID. As more young people present to hospital with eating disorders during the pandemic, she said it's important that programs like Toronto General's run at capacity, and even expand. She added a stepped-care approach to treatment - in-patient to day hospital to outpatient treatment - is the gold standard."

The longer you let an eating disorder go without treatment, the more difficult it is to recover."

Cammie, Cassandra Szorady's mother, said watching her daughter navigate eating disorder treatment has been disheartening. Despite the high mortality of these psychiatric illnesses, there are only 20 in-patient beds that can be accessed free of charge in Ontario. Other residential treatment programs exist, but often at a hefty cost.

Everyone talks about mental health all the time, and there's not even enough to help a handful of people," Cammie said.

She finds herself often wondering whether the health-care system gave up on her daughter.

She was sick, and an eating disorder is really hard for people to understand," she said. People say Just eat,' or Just stop throwing up.' That's not how it works. It's a mental illness.

It's horrific, what happened," Cammie said. She could have been saved."

Nadine Yousif is a Toronto-based reporter for the Star covering mental health. Follow her on Twitter: @nadineyousif_