My sister has schizoaffective disorder. Her fight for after-care became my fight, too

When Sue was in hospital, we got conflicting information, pressure, and few good options. Like other Ontarians in her situation, we needed sound advice: we needed an advocate
By Mary Baxter - Published on Mar 05, 2020
The author (right), pictured with her sister Sue circa 1997. (Courtesy of Mary Baxter)

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LONDON — On a Friday morning last July, Sue woke up in her London apartment and tried to get out of bed. She managed to put her feet on the floor but then found herself frozen. There was no one there to ask for help: she lived alone. And she couldn’t get to her phone or even call out: she has difficulty finding the right words, and, in recent months, her voice had weakened to a near-whisper. I don’t know how long she’d been like that before I arrived, having been contacted by her medical-alert service after she’d missed her morning medication.

Sue is my sister. She is 63 years old and has suffered from schizoaffective disorder (a mixture of schizophrenia and a mood disorder) for the past four decades. In the early years, when she was convinced Joni Mitchell was her mother and forgot to eat, when she nearly lit her apartment on fire, and, more recently, when she said people were taunting her and issuing commands through the “underground,” she’d go to the hospital or we’d take her there. Obtaining admission was hit or miss; it always involved multiple assessments, hours of waiting, and frantic pleas to speak with a social worker or psychiatrist.

But I thought this time would be different. Seven months earlier, she had been diagnosed with Parkinson’s disease, and it was progressing rapidly. She was at risk of falling and unable to clean or dress herself. She had problems eating. Worst of all, perhaps, she had begun to lack the capacity to understand when her well-being was threatened and so was unable to protect herself.

We’d gotten approval from her home- and community-care coordinator for twice-daily visits from a personal-support worker, but she had to go on a waiting list; all that was immediately available was a visit twice a week. So my caregiving role intensified; her daughter and my older sister, both of whom live in other cities, helped when they could. Each day, sometimes twice a day, I’d stop by to open her Meals on Wheels dinner, get her dressed, check her medication, pay her bills, or ask the building superintendent to fix her leaky kitchen faucet.

I was relieved, then, when, within minutes of seeing her, the emergency-room doctor recommended she be admitted to hospital. I told him there was no way she could live on her own after discharge, and he nodded in what I thought was agreement. Finally, Sue was going to get help.

My relief was short-lived. Like many Ontarians in similar situations, we found ourselves faced with conflicting information and incredible pressure to make decisions we feared would be detrimental to her health. As our hospitals grow busier and busier, people need to have access to reliable, arm’s-length advice about after-care.

Roughly 10 days after Sue was admitted, we met with the hospital’s social worker, a home-and-community-care coordinator, and her treating physician to discuss her discharge. Sue had started to walk, and her voice was growing stronger. Still, she couldn’t get out of bed on her own, was often confused, couldn’t understand what people were saying to her, and had difficulty speaking. “Spoon” might become “brush,” for example. The doctor said that he had adjusted her Parkinson’s medication and that there was nothing more they could do.

Discussion turned to the future. I expected options, information, and, most important, plans for a transition to assisted living. Instead came seemingly endless questions. Had we thought about a private (and expensive) retirement home? If we were considering long-term care, were we prepared to apply to several homes? Would we consider something outside London, maybe in Owen Sound — 200 kilometres away?

I told them we were prepared to look at several homes but that Sue should remain in the city. Long-term-care workers typically don’t receive training for supporting people with severe mental illness, so Sue needed family nearby.

The meeting ended with the care coordinator promising to call later in the week. The call never came. I called the social worker, who told me they planned to send Sue home so that she could be added to a crisis list for placement in long-term care. “There is no way my sister can live on her own,” I told her.

Remaining in hospital certainly wasn’t ideal — Sue found it depressing, and she ran the risk of picking up an infection. But what other choice was there? If she were sent home, she’d be back within a week.

Soon after, the hospital’s manager of medicine services called. They’d arranged for personal-support workers to pop in every two hours and “cue” Sue to look after herself while she waited.

Later that day, I received another call, this time from another home- and community-care coordinator based at the hospital. The manager had been mistaken, she said: hospital staff were not responsible for arranging care after a hospital stay. That was the purview of home and community care, an arm of the area’s local health-integration network.

The most it could offer, she said, was three 45-minute visits a day. I knew from past experience that personal-support workers were not allowed to help with meals or dispense medication. They would not clean, do laundry, drive her to appointments, help her with physiotherapy, check in overnight, or “cue” her. They could help her get showered and dressed. My frail sister, 5’8” and less than 120 pounds, would be in her basement apartment alone with almost no assistance.

It would be faster for Sue to get into long-term care from home, the coordinator explained, because provincial legislation doesn’t allow hospitals to place people on the crisis list (unless the hospital has declared a bed crisis).

Maybe I could fill in the gaps, I thought, if it were only for a few more weeks. But could the coordinator guarantee that Sue would land on the list?

“I can’t,” she said, adding that it would be up to the care coordinator in the community who took on Sue’s case to assess her eligibility for long-term care and the crisis list. “But after all that you’ve told me,” she said, “I’m sure she’d qualify.”

The next day, while searching online, I learned that hospital discharges are often a point of contention when it comes to frail patients. People like my sister are called “bed blockers” — a pejorative term to describe people who have stabilized but are too weak to return home. Health policy-makers have long said that such patients create logjams in wards, the effects of which domino through the system, leading to cancelled surgeries and long waits in emergency.

According to the CBC, the number of beds assigned to what’s officially called “alternate level of care” has soared in recent years at London Health Sciences’ two hospitals. From 2014 to 2017, these patients accounted for 108,688 days in hospital and for 7.6 per cent of all patient days spent in the hospitals. A report from Health Quality Ontario indicates that, in 2016 and 2017, more than 20 per cent of patient days spent in hospital were attributable to alternate-level-of-care patients in at least three regions across the province.

But bed blockers have a legal right to have their eligibility for long-term care determined while in hospital, according to the Toronto-based Advocacy Centre for the Elderly, a legal clinic for low-income seniors. And, the centre says, the patient’s right to stay is legally justified and backed by precedent.  Jane Meadus, ACE’s institutional advocate, says that the health-care system has adopted strategies — including “home-first policies” that send people home to apply — to avoid in-hospital application for long-term care. And some home- and community-care coordinators or hospital staff, she says, simply tell patients they are ineligible before an application is made: “If they actually did an assessment and determined the person’s not eligible and [the patient] disagrees, you can appeal that finding of ineligibility for long-term care to the health-services appeal-review board. But if they just said, ‘Oh, we’re not taking applications because you’re not eligible,’ there’s nothing to appeal.”

A health-ministry spokesperson told TVO.org via email that, “although hospitals continue to experience capacity challenges, the ministry acknowledges that hospital staff utilizing pressure tactics is inappropriate.” He recommends that patients and families who encounter such tactics contact the hospital’s patient-relations office. If no resolution is reached there, he suggests contacting the patient ombudsman.

Meadus also says that some hospitals misrepresent patients’ legal rights through omission, threats, and intimidation in support of their home-first policies. She recalls one of her clients waiting for long-term care in hospital being told by hospital representatives that “if she didn’t, quote, ‘choose’ and accept a home that she didn’t want to go to that was far away and she had never seen, they were going to put her in an ambulance and drop her in February on her daughter’s driveway.”

My sister’s experience suggested that patients could benefit from having an arm’s-length adviser who could have informed her about her rights when it came to arranging after-care. If Sue had been on the hospital’s psychiatric ward, she would have had access to a free rights adviser as mandated under the Mental Health Act. If she’d been in a psychiatric facility, she would have had access to a free patient-rights advocate. Both services are provided by the Psychiatric Patient Advocate Office, which was established in 1983, for the times in the treatment of mental illness that patients may lose their rights to personal agency. The adviser and advocate don’t work for the hospital, so they can provide an independent, arm’s-length perspective. However, their responsibilities and involvement are tied to specific items under the Mental Health Act, so they could not have become involved in this situation.

In a similar way, under long-term-care regulation, home- and community-care coordinators are charged with coordinating care after discharge and informing patients of their rights in regard to long-term-care applications because their employers, the LHINs, are seen to have an arm’s-length relationship with the hospital. (The Ontario Patient Ombudsman’s Office, created in 2015, does not perform patient advocacy, although a spokesperson tells TVO.org that it will call a health organization and act as “a bit of an intermediary.”)

The problem, Meadus says, is that coordinators feel pressure to make sure their decisions align with the interests of the hospital; they often have offices onsite. “In fact, they may share that office — which we think is not legal — with the discharge planner or the social worker from the hospital,” she says. “So you just can imagine the pressure even just that puts on them.”

Meadus is concerned that the situation will worsen with the establishment of Ontario Health Teams — the integration of different components of the health-care system, such as family doctors, hospitals and home-care providers — as mandated by the province in 2019. Last month, the provincial government announced plans to transfer responsibility for home- and community-care coordination to these teams. Organizations formed from the LHINs' home- and community-care components would provide the service in the interim, which could be for some years. The approach means that "hospitals and primary care settings [doctors' offices] and others [within a health team] will be able to arrange home care directly for patients," the ministry says.

The ministry says that the approach should make it easier for people to access home and community care regardless of whether they're at the doctor's office or in a hospital or community setting. Meadus thinks that the proposed bill, the Connecting People to Home and Community Care Act, contains some promising elements — in particular, a pledge to remove caps on how much home care people can receive, which would make it possible for some people to receive a level of care that would allow them to return home. "That's not a bad thing," she says, although she adds that many people will continue to experience the same problems with an added complication: “If [home- and community-care services currently offered under the LHINs] are all part of the same group, there’s not going to be any independence, and the loser is going to be the patient because they are going to start pushing people out of the hospitals.”

I told Meadus what I’d concluded about the need for patient-rights advisers, like the ones that exist for psychiatric patients, in every hospital. She agrees that the idea has merit but cautions that it would not be fail-safe.

In the psychiatric system, she explains, a psychiatrist has to make a finding of incapacity or sign a form to trigger a rights adviser’s involvement. “What we find, for example, in lots of places where there are seniors in mental-health units, [doctors] don’t bother. They’re not making findings of incapacity, even though they’re getting consent from other people. They’re not putting people on the form although they’re detaining them ... The same thing would happen in a system that’s reliant upon the hospital calling somebody.”

What is really needed to fix the problem, she says, is for the provincial government to tell hospitals, "you can't [pressure patients to leave] anymore, and if you do that, and you’re caught doing it, we’re going to be penalizing you.” But with everyone focused on the overcrowding in hospitals, she says, “I don’t see it.”

The health-ministry spokesperson stated that the proposed legislation would improve care coordination because Ontario Health Teams partners will be able to work together to “understand a patient’s full health care history, directly connect them to the different types of care they need, [and] help patients 24/7 in navigating the health care system.”

At least I knew enough to ask to have Sue assessed for eligibility for long-term care while she was in hospital. Anticipating a fight, I asked my sister-in-law — a social worker and rights advocate — to tag along for the hastily arranged follow-up meeting that I’d demanded to ensure an in-person acknowledgement of the request. During the two and a half hours we spent in Sue’s tiny hospital room, the care coordinator seemed intent on sidestepping it: she ducked out for nearly an hour, denied that she had a responsibility to honour the request, called in the manager of medicine services, who challenged my right to speak for my sister (I was her legal Power of Care and Power of Attorney, both of which were in effect because of Sue’s cognitive impairment). When the manager insisted that Sue was fully mobile, I asked Sue to try to get out of bed. She could not. Finally, the coordinator agreed to the assessment.

We never did receive the application form, something I hadn’t known was legally necessary to complete the request, because the coordinator hadn’t told me about it. Months later, I learned that the assessment had never gone forward.

Yet Sue was in luck. While we were pushing for the long-term-care assessment, the psychiatrists who had been involved in her treatment were advocating for her to remain in hospital. Shortly after our showdown, these doctors switched her psychiatric medication, and her mobility substantially improved. They also coordinated a transfer, a few days later, to Parkwood Mental Health Institute. She no longer needed long-term care but still required significant support. Seven months later, a space opened up at a local group home that could provide assisted living — she moved there in early February. We’re not sure this solution will continue to work as her Parkinson’s progresses, but at least she is safe for now.

I’ve read this essay to Sue; she doesn’t understand much of it. But she does recognize the emotional truths. She remembers that the psychiatric teams were the only ones, outside her family, who fought to keep her in the facilities.

“It’s good” that I’m writing about it, she manages to say. For a second, my sister’s routine expression of worry — raised eyebrows, tensed jaw — eases. She’s relieved someone is telling her side of the story. It would’ve been better if someone had been there to help us through it.

This is one in a series of stories about issues affecting southwestern Ontario. It's brought to you with the assistance of faculty and students from Western University’s Faculty of Information and Media Studies.

Ontario Hubs are made possible by the Barry and Laurie Green Family Charitable Trust & Goldie Feldman.

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