In the Here At Home film Honestly Painful, Mark Wroblewski remembers the elation he felt when he learned he was going to be housed. But his happiness has since been tempered by anxiety about what happens when the study ends. “I wish this program could continue for another ten, twenty years,” he says, “because it’s giving me a secure home.”
His caseworker, Bouchra Arbach tries to comfort him by suggesting that he concentrate on his present reality rather than worry about the future. But later she confides in a voice-over, “Those expressions of anxiety are very real. I don’t know where the project is heading. I don’t know whether the funding will be renewed. What I do know is they [the participants] have housing today.”
Ethics At Home
For us, Wroblewski’s fears once again raised a nagging question: what is the human cost of conducting a study like At Home? I called Dr. Barbara Russell, who works and teaches in the field of bioethics, to talk it over.
According to Russell, most studies involving human participants in Canada are expected to follow something called the Tri-Council Policy Standards and be reviewed by a research ethics board. Digging into the literature of the At Home study, I discovered that it was approved by no fewer than 10 different review boards before it swung into action. And to make the study as sensitive as possible to the needs of the participants, the study designers sought insight from a panel of people with lived experience of mental illness and homelessness.
People need data
All the same, Paula Goering, At Home lead researcher and one of the designers of the study, acknowledges that there are moral dilemmas associated with the project, “It’s not easy. This kind of randomized controlled trial is not an easy thing, but it’s extremely important that we conduct one.”
“There are many skeptics,” says Sam Tsemberis, founder of the Housing First model, and consultant to At Home. “People needed to see data because the strategy is so different. The research, which sometimes feels like a painful elaboration of the obvious, gives the whole thing a lot more credibility.”
To gain that credibility, the study must maintain a degree of clinical rigour that, despite its compassionate motives, verges on coldness. Take, for instance, the story of Valère in the Here At Home film Not Chosen. The film reminds us that while1,265 participants are housed by At Home, 970 are not.
When researchers first recruited participants for the study, they explained that half would be housed (the Study Group) and half would carry on as before (the Treatment As Usual group). A randomizing algorithm decided who would be in which group.
A once-in-a-lifetime opportunity
Paula Goering recalls a story she heard from a young research assistant in Moncton who told her about visiting a woman with schizophrenia in the Treatment As Usual group. “The researcher noticed a cardboard box on the table and asked what was in it. The woman replied that it was a set of dishes that she had gotten at the local goodwill so that when it was her turn to get some kind of housing she would be ready”
“Hearing this story really reinforced for me that we have an obligation to do everything we can to help the Treatment As Usual group because while they’ve been an extremely important part of this study, they haven’t benefited from it.”
Goering’s hope is that even though the woman in this story is getting nothing in the short term, the study will result in policy decisions that can help her.
“We can’t assume that people’s lives are improving due to Housing First unless we can compare them to people who only have access to the usual system of care. Intellectually this makes a lot of sense, especially since this study represents a once-in-a-lifetime opportunity to establish such a comparison. On the other hand, the randomization has been hard for Treatment As Usual participants and for the researchers who are in contact with them.”
Moral distress/moral space
According to Barbara Russell, the difficulty experienced by the At Home field researchers has a name: “When people believe they know what the ethical thing to do is, but can’t do it for one reason or another, they may experience ‘moral distress.’” Russell notes that the phenomenon is well-known in the field of nursing. “Moral distress is positive in that it affirms that people are paying attention to ethical considerations. If it increases or remains unaddressed, however, professional burn-out can result. That’s why it’s valuable to be open and to encourage dialogue within what philosopher Margaret Urban Walker calls a, ‘moral space.’”
It seems that the process of thinking through and discussing ethical issues may be as important as resolving them. In the spirit of creating and maintaining a moral space, let us know about your experiences of moral distress, or any other thoughts you may have on these thorny matters.
This is the first of two articles about ethics and the At Home project. The second post will look at the moral dilemmas involved in filming for the Here At Home web doc.