What are the emotional consequences of performing assisted death?
When Pat* performed her first medically assisted death earlier this year, she was surprised by how much it affected her.
The doctor had prepared by reading the literature from regions that allow the practice, and discussing the process with another physician who had performed it. The act was preceded by resiliency training, and a debriefing afterwards focused on the emotional impacts on Pat and the other health care workers present.
But “as health care professionals, and even as human beings, we’re just not used to doing this sort of thing,” she says. “In medicine, we’re used to death. But for most of those deaths, we’re involved in a passive way, so when it occurs, it’s inevitable. In this case, you’ve moved into an active role in the process.”
While she expected to have a reaction, she underestimated how stressed and emotional the procedure would make her. “For a day or two after the administration, I found it difficult to really focus, and everything felt more emotionally charged,” she says.
And yet she had positive feelings, too. As one of the doctors who made the assessment of whether the person qualified for medically assisted death, she got to intimately know the patient’s distress. “You really understand how terrible some of these people’s lives are on a minute by minute basis,” she says. “As a clinician, you’re always trying to relieve suffering, and to know that you’ve relieved the suffering is extremely gratifying.”
“This was one of the most challenging, but also one of the most rewarding, things I’ve done in my career,” she says. “It’s not so bad that any of us [who’ve done it] are saying we’re never going to do it again, but it is absolutely draining in the days following the event.”
The national conversation around assisted death has focused on the impacts on society and on patients. But now that we’ve moved to its implementation, more attention is being paid to the practical considerations, including the emotional impact it will have on the health care professionals like Pat, who perform it. Based on the evidence from other jurisdictions, it can have profound effects.
Medical assistance in dying (MAID) comes to Canada
Though only a few cases have been covered in the media, medically assisted death is being performed across the country. Outside of Quebec, where it’s legal, the procedure is available to patients who are granted individual exemptions to the laws that make it illegal in Canada – court rulings that often come with publication bans. Though it’s not known if they went through with it, nine people had been granted exemptions by The Ontario Superior Court as of this story’s publication date, according to Ministry of the Attorney General. (Alberta doesn’t keep similar numbers.)
Those individual court cases will soon stop being necessary, and the number of people requesting and accessing medically assisted death will rise. The Supreme Court has found the law unconstitutional, but has extended it until June 6, when assisted death should become legal in some form. No health care professionals must participate, as they will all have the right to conscientious objection. How referrals will happen is also in debate, with the government discussing creating a referral database, such as a toll-free number, that would avoid the ethical issues some physicians feel about even referring patients.
The courts allow physicians to either prescribe a fatal dose of pills that patients take themselves or to administer the medication directly. But since the best oral drugs, aren’t yet available in Canada, health care providers have been giving patients drugs through an IV – meaning they are present at the moment of death, which might heighten their emotional response. The process takes about 15 to 20 minutes, and normally takes place in a hospital.
Though most attention has been focused on the role of physicians, nurse practitioners will also be allowed to perform it, and the procedure is often done with support of a team that can include registered nurses, social workers, psychologists or chaplains. “No provider functions alone these days,” says Carolyn Pullen, director of Policy, Advocacy and Strategy at the CNA. “The [legislation] even talks about the health care team supporting each other, from assessment to the decision making process to administration.”
It’s a new role, but it doesn’t have to be a negative one, argues Ellen Wiebe, who has performed medically assisted death on three patients. The family doctor, who is on the physician advisory council of Dying with Dignity Canada, has restricted her practice to women’s health and assisted death. She shared her experiences with performing medically assisted death on a Calgary woman who had ALS, and travelled to Wiebe in Vancouver to die.
“I’ve been a doctor for 40 years, and I’ve been at lots of death beds of my patients and loved ones,” she says. “They were all in situations where they had totally lost control over their lives: unable to move, unable to feed themselves. I’d never been at a death where I felt like the patient was in charge before, and I loved that.”
The emotional impact on health care providers
The research done in other jurisdictions offers some insight into the emotional effects of assisting in a death. Though it’s logical that all members of the health care team would be affected, most research has focused exclusively on doctors. One of the most important is a 2006 review, which found that “the emotional and psychological effects on the participating physician can be substantial,” including feeling powerless and isolated, and being taken aback by the “suddenness” of the death. Among other things, it looked at surveys in the late ’90s of US physicians who had performed medically assisted death and found 53% were comforted by having done it, 24% regretted it, and 16% said the emotional weight of having performed it had negative effects on their practice.
A study from mid-’90s of The Netherlands found similar results. It looked at interviews with 405 physicians and showed that physicians felt both comfort and discomfort afterwards. Seventy-five percent felt discomfort after administering a lethal medication, but none had regrets, and 95% said they would be willing to do it again.
More recent research has looked at the impact of receiving a request as well as performing medically assisted death. One from Oregon from 2004 interviewed 35 physicians who had received requests and found that they often “experienced apprehension and discomfort before and after receiving requests” due to worries that they weren’t managing symptoms and suffering sufficiently, that they didn’t know their patients well enough, and that they didn’t want to “abandon” their patients. Most doctors also discussed the emotional aspects of the process with their spouses, rather than with colleagues.
Physicians are far more likely to receive a request than to perform the act; doctors in the Netherlands field requests two or three times a year on average. But only about one-tenth of those will end in assisted death, because patients often just want the option and don’t go through with it, or because physicians decide it’s not appropriate.
Supports for health care providers
Assisted death doesn’t just affect the physicians providing it. The rest of the team, and even conscientious objectors who are fielding requests from patients or aware of it happening in their hospital, can also be affected by it, points out Mona Gupta, a psychiatrist at the Centre Hospitalier de l’Université de Montréal and a bioethics researcher.
But “for those who have agreed to be involved, there is a mechanical process of understanding the law and the logistics, and there’s a coming to understand what is my role, why am I doing this,” she says. “People are doing that individually, with close colleagues, with the GIS [group at the hospital that oversees implementing this], and in individual counseling. There probably isn’t one right way.”
One suggestion is to have formal briefings that offer the health care team a space to talk about what happened and its effects on them with ethicists, spiritual care providers or psychologists. Those who need more support could then turn to employee assistance programs.
“From a practical point of view, we need to help [health care providers] develop communication skills and the ability to personally reflect [on assisted death],” says Eric Wasylenko, a palliative care physician and clinical ethicist at the University of Alberta.
“Just as you’re not finished your patient work until you’ve done the documentation and discharge, you’re not finished the process of providing an assisted death – or not providing it – until you’ve had the chance to reflect with your team about the practical and moral aspects of this act.”
The Canadian Nurses Association has also suggested debriefings that include a psychological aspect. “Practitioners may need psychological support in the forms of counseling or debriefing with their team to talk through this episode of care that was challenging for them,” says Pullen. She says support from the team is also crucial, as well as education beforehand. “Under assisted dying, death will happen differently. People might be more alert immediately before they die, or seem fairly healthy, so it might seem like an expedited process. Practitioners are going to need to understand what to expect, and to be aware that they may experience these emotions post episode.”
George*, a physician who has performed assisted death in Ontario, says the “macho culture” of medicine makes it harder for physicians to reach out for help. He himself had a debrief at his hospital, yet processed his feelings in private. “I don’t feel comfortable showing emotion in front of the team, in front of my colleagues,” he says.
Thankfully, he didn’t feel much discomfort over his actions. “I didn’t feel any more distress about this death than I would about any other comfortable death – and I felt a lot less distress than I do about bad deaths,” he explains. His feelings were mitigated by his patient, who he describes as kind, intelligent and forceful about his desire to die. “Everything about who he was was about control and dignity,” he says. “I was respecting his wishes. It felt like the right thing to do.”