“Get your hands off me, you pig.”
The voice was familiar and so were the words—this was my *patient, a 35-year-old man with severe schizophrenia and substance-use disorder who was also homeless. He wheeled himself away from the nurse who had been trying to take a blood sample. He had been admitted for an infection of his heart valve, and over the two days that he had been in the hospital I had received numerous complaints about violent behaviour from the nurses, learners, and co-patients, as well as the porters who took him down to complete tests.
“When can he be discharged?” said the charge nurse on the unit, while briefly making eye contact with me. She was not the only one to have asked this question. The psychiatry service felt that this patient’s behaviour was in line with his personality and anti-psychotic medications would not help. When he refused to take antibiotics or complete an ultrasound of his heart, most of the physicians involved felt that he understood the risks of refusal. He was unhappy about having to fast for a test and not being allowed to go outside to smoke. Eventually, he signed a piece of paper saying that he understood the consequences of leaving, and he was gone.
One week later, I saw his name appear on the whiteboard in the emergency department. He had been found unconscious on the street and brought in with complications of a failing heart. I will never forget the image of his frail, skinny body covered with a multitude of bruises—his feet pitch black—connected to a breathing machine and surrounded by a plethora of medications hanging around his bed like ornaments on a Christmas tree.
He died three days later in the critical care unit after his heart stopped. I tried to focus on what everyone had said the day he left the hospital. “We have done everything we can and if he refuses care that is his choice.” I could not help but wonder if there was more I could have done.
Impact of mental illness and housing instability
Approximately one million Canadians above the age of 15 live with mental illness. There is a strong relationship between mental illness and homelessness, with each one increasing the risk for the other. Both mental illness and housing instability have a significant impact on one’s physical well-being and are associated with increased risk of chronic physical illness such as diabetes and heart disease. People with mental illness are also twice as likely to struggle with substance use.
Furthermore, individuals experiencing homelessness and mental illness have higher rates of emergency department usage, re-admission to the hospital and death most often associated with complications of infection or substance use. “It’s not typically the mental illness that kills them, it’s their physical health condition,” says Vicky Stergiopoulos, physician-in-chief at the Centre for Addiction and Mental Health.
People living with severe mental illness are less likely to receive the standard level of care for their physical illnesses. One of the reasons might be premature discharge from acute care settings.
Drivers of early discharge
Substance use is considered one of the most important risk factors for leaving the hospital too early. “The inability to use drugs inside the walls of the hospital is often the reason why [patients with mental illness] leave and subsequently their medical care suffers,” says Richard Doan, a psychiatrist working with Toronto’s Inner City Health Associates and the Multi-Disciplinary Outreach Team (MDOT) .
A Canadian study showed that people living with severe mental illness and homelessness reported being discriminated against in health care settings on the basis of mental illness, homelessness and substance use, more frequently than being discriminated against on the basis of race or gender. “People are supremely sensitive to the discrimination that ends up happening in the hospital setting,” says Bernadette Lettner, a registered nurse who works with the Toronto Community Hepatitis C program (TCHCP). “They know when they are labelled a difficult patient and they react to that.” The consequence is often not only that they leave hospital prematurely but also that they refuse to go back even when they become very unwell.
Furthermore, violent behaviours in the hospital can often also be a catalyst for early discharge. Doan shares a story of an 80-year-old woman who would throw milk cartons or coffee at members of the care team with incredible accuracy. The care she received over many years was often cut short by discharge.
Jeff Turnbull, director of Ottawa Inner City Health, says, “In a hospital, these [behaviours] are viewed as a problem with that person’s personality—that they are a bad person—and therefore the response is a punitive one.”
There can also be a lot of intrinsic and extrinsic pressures to discharge patients. “In a hospital setting, where we are constantly pressed for beds, if someone leaves against medical advice because they don’t like the care we have chosen to provide them, we consider it a success because we get to strike their name off our list,” says Turnbull.
“If I am loud, constantly screaming, I smell bad, or I have bed bugs, no one is going to be happy to take care of me,” says Arash Nakhost, psychiatrist at St. Michael’s Hospital in Toronto. As long as someone is not critically ill, he says, it is easier for care teams to discharge them.
But sometimes, due to their mental illness, people may not have insight into the implications of leaving the hospital too early. This should prompt a formal assessment of their capacity to make health care decisions, says Doan, and when appropriate, they should be kept in hospital under the Mental Health Act.
However, these decisions can be very difficult. “I am always wondering if it’s OK for my patient to go to ED, be tied down and get medication against their will,” says Kirsten Dixon, a family physician at Seaton House infirmary, a primary care clinic in a Toronto shelter for men. “In most cases there is a lot of grey area, and I am assessing their insight into their illness daily.”
Alternate models of care
“First of all, educating health care providers in acute care settings about addiction and mental health is very important,” says Turnbull, so that patients are viewed as a whole outside of their difficult-to-manage hospitalizations. This includes emphasizing that they may need to be treated with increased patience, be allowed to walk away in the middle of an assessment to attend to their addiction, be reminded why they are in the hospital, and have their expectations listened to.
“I think about who we select to go into medicine,” says Doan. “The reality is we choose people coming from a certain socioeconomic status because of the cost of medical education, and often these people have little to no experience with poverty or mental illness.” He emphasizes the need to re-adjust attitudes toward care of individuals with mental illness early on in training. Isaac Bogoch, a general internal medicine physician at Toronto General Hospital, agrees. “There is no substitute for being on the ward and caring for [patients with mental illness or addiction] with good role modelling from the staff.”
One proposed solution to the fragmented care some patients receive is moving as much acute medical care as can be safely provided outside the confines of the hospital into specialized clinics, infirmaries built into shelters, or drop-in centres.
Ottawa Inner City Health is a good example of this model. They have 250 beds attached to their shelter-based residential program throughout multiple locations in the city. They provide medical, psychiatric and end-of-life care to individuals who are homeless and often have severe mental illness as well. Their Targeted Emergency Diversion Program (TED) consists of 24-hour monitoring for homeless people under the influence of drugs and alcohol so they can safely detox in the community as opposed to the hospital. They have been able to divert 3,400 ambulances per year, thus preventing many emergency room visits.
“I think we can benefit from a different setting where the training and attitude of staff is different,” says Stergiopoulos. “It is very difficult to change the entire bureaucracy of the hospital and it is easier to start a smaller unit in the community that is staffed by people who have experience in mental illness and understand the needs of these patients.”
Bogoch, who often calls shelters or case managers for patients who leave his care, believes that good communication can go a long way. “We have to take very careful consideration when people leave the hospital to ensure that we pass the torch to the next group of individuals who will take care of them in the community,” he says. Dixon, who receives some of these patients at Seaton House Infirmary, could not agree more. She highlights further how a phone call from an acute care team struggling with aggressive behaviours can lead to a front-line shelter worker coming into the hospital to help.
There is a lot that can happen inside the walls of the hospital, including the use of peer support workers who can help people feel calm, remind them why they need to wait, and support them so they don’t leave against medical advice. Bogoch wonders if we can create a vulnerable-individual pathway, much like the pathways that exist for other medical illness. This would mean a team of patient navigators working with community care workers who can be alerted when a patient is leaving the hospital, and together they can come up with a plan to ensure a smooth transition into the community and follow-up, as well as a backup strategy if things don’t go as planned.
Bogoch acknowledges that sometimes aggressive behaviours cannot be mitigated despite best efforts, and can seriously threaten the safety of the care providers. “It is very important to respect everyone’s needs,” he says. “A lot of times the conversation revolves around helping the patient, which is important, but we don’t talk enough about the impact on the care team involved. No one wants to come to work and get a needle stick injury or be punched in the face.”
The patient and provider may have very different goals
The difficulties inherent in the care of individuals with mental illness are numerous and some may be graver than others. As with any complex issue in health care, the solutions will have to be multi-faceted. A place to start may be a focus on shifting attitudes of health care workers toward people who have mental illness and the goals of their treatment plans.
For Turnbull, the greatest challenge in working with people with severe mental illness was to recognize the instances where what he was trained to do was not effective, and instead he needed to trust and follow the direction of his patients. Many individuals are living from crisis to crisis, he says. The five-year consequences of not taking their diabetes medication may be overshadowed by the demands of their addiction.
Providers need to change the way they work so that they are addressing what is important to their patients before engaging them in conversations around treatment of their acute or chronic medical illness. “If you really want this patient to stay [in hospital], you will have to treat them differently,” says Turnbull. “Find out from them what success looks like from their perspective.”
*Details have been changed to protect privacy