I recently had the honour of co-facilitating a conversation about death and dying with a group of peer support workers from across Canada. We recognized there wasn’t space being made for peer support workers to support their peers with conversations around MAiD, death and dying, and so we worked to create one.
Having this conversation validated my perception that people with lived and living experiences of death, dying and wanting to die are well-equipped and well-suited to having conversations with their peers about these topics.
I work in hospitals, community organizations and post-secondary institutions that consistently implement policies preventing people with lived and living experiences of death, dying and wanting to die from participating in supportive conversations about these topics. Time after time, I’ve seen “concerns around liability” used as a scapegoat for policies rooted in stigma. These “concerns around liability” are also the basis for policies that discourage open discussions on these issues.
During our conversation, a peer supporter from a community-based organization told me that if a peer discloses they are thinking about death and dying, the peer supporter is expected to thank the peer for sharing and then escalate the conversation to a clinician to ensure client safety. When the peer supporter asked about the rationale for this policy, the organization noted it wasn’t necessarily related to their perception of the peer supporter’s capacity to engage in the conversation, but that it was about liability and risk, and needed to be prioritized first and foremost.
In this instance, I hear “liability and risk” and think about stigma that’s led us to believe that people who have experienced thoughts of suicide and death themselves are ill-equipped to support others having these same thoughts. I think about how this is a practice that exists to uphold our dependence on and the credibility of people with degrees and credentials. And I think about how this policy works to continue to dismiss people with lived and living experiences from being able to use these experiences in a meaningful way.
“The system” has been built to maintain these views on risk and self-serving priorities, and it’s leading to people dying. Because we generally haven’t allowed peer supporters to have conversations about death and dying, and because we rely on costly, gate-kept research studies as the only source of “evidence” to support policy, organizations perpetuate the belief that keeping peer supporters out of conversations about death and dying is best practice.
We need to stop allowing the concept of “liability” to dictate rules and policies, especially when we know peer supporters are ready and eager to play this role.
If we are going to consider liability and risk as factors influencing organizational policies (which I know we must), then we need to consider the concept of risk and liability factually. There’s no evidence to suggest that talking about death and dying increases the risk of someone dying. There’s also no evidence to suggest that peer supporters are not equipped to have conversations about death and dying. If we’re going to consider liability in policymaking, then we also need to consider the liability implications of not having peer supporters involved in these conversations.
Training, systemic practices, college codes of conduct, ethical obligations and organization expectations mean that clinicians will respond in a specific way to these conversations. Typically, this involves when hearing someone is considering suicide, responding by asking safety related questions, co-creating a safety plan with the service user, and/or calling police or crisis services.
However, as one of the participants in our discussion said: “There’s no other illness where someone says that their pain is at a level 4, and we treat it like it’s a 10. So why is there an expectation that we respond that way when someone mentions the word suicide?”
People like me, who have disclosed thoughts of suicide many-a-time know that this topic will lead to this type of response. I know that if I say that I’m thinking about harming myself, then the response from the clinician will be “Thank you for telling me this. Can I ask you a few questions about that?” followed by a series of questions about whether I have the means, whether that means is imminently available to me, and whether I intend to carry out the “act.”
People like me, who have disclosed thoughts of suicide many-a-time know that this topic will lead to this type of response.
For me, and for many others, this means that I simply avoid bringing up these topics. I don’t talk about thoughts of death and dying during my weekly sessions with my therapist; I don’t call a crisis line to talk about them; I don’t mention them to my doctor when we talk about how my prescription is working for me. I think we should be more concerned about the risk associated with me not talking about these ideas in my head (related to suicide), than we should be about the risk of peer supporters’ having these conversations with people like me.
We need a space where these conversations can happen without clinical practices and expectations informing the responses. I need to be able to talk about the thoughts in my head without someone hitting the panic button when I do. To suggest that peer supporters should be building safe spaces for these conversations and then immediately referring a peer to a clinician or alternative service the second that the words suicide, death or MAiD are mentioned cannot possibly be defended as “best practice.”
Instead, peer supporters should be expected to respond to peers’ disclosures about death and dying based on their own lived experiences. Peer supporters should consider, “When I have wanted to die, what was or would have been helpful for me to hear in that moment?” Since the answer is rarely “I wish someone had said thank you for telling me, I’m going to call 9-1-1,” they shouldn’t be expected to respond that way.
The discussion I co-hosted was attended primarily by individuals working for grassroots organizations and consumer-survivor initiatives – organizations founded on lived and living experience expertise and typically willing to try things outside the box because they know they work (i.e., not documenting mentions of suicide that come up during conversation, offering anonymous services, not requiring that peer supporters always defer to a clinician). These same organizations are vastly underfunded and facing constant pressure from funders to conform to the way that the system is doing things. Because peer supporters are working within spaces that allow for flexibility (and because they self-admittedly break the rules sometimes when they know it’s the right thing to do), these peer supporters are having conversations about death and dying with their peers.
They described that if someone mentioned they were considering palliative care in hospital, MAiD, hospice care or suicide, they would respond by saying “That’s valid – which one do you want to talk about today?” They explained that as people who have considered suicide themselves, they understand that considering death when you’re experiencing non-relievable pain is a normal response, therefore they respond to these topics “normally.” They respond with compassion, empathy and by empowering their peers to be able to lead the conversation as opposed to taking over and jumping to panic/fear.
So, if we want to continue to talk about liability, and we want to talk about it factually, then factually speaking, allowing people to be able to talk about death and dying saves lives. We know clinicians are restricted from responding in ways that allow for exploration into these areas because of legal and professional obligations. Peer supporters are ready and able to support people with these experiences – we just need organizational policies to get with the times. These policies need to be reviewed, co-created by people with lived and living experiences and must enable peer supporters to participate in the work of saving lives.
What would happen if we allowed trained peer supporters to participate in these conversations, and they were successful in helping to save lives? This would mean that people with lived and living experiences (as well as people with degrees) are recognized as worthy of making an impact in a system that is designed to keep them down. God forbid.
I offer my sincere gratitude to the team of colleagues that worked with me to co-create the space that inspired this blog article. And I offer my genuine heartfelt appreciation to the peer support workers who allowed me to share this space with them. They offered their experience, knowledge, compassion, and their vulnerability and it’s been a true honour.
