“Thank you for sharing. Do you have a plan?”
How outdated policies are preventing peer supporters from saving lives.
I recently had the honour of co-facilitating a conversation about death and dying with a group of peer support workers from across Canada. My colleagues and I recognized that there wasn’t space being made for peer support workers to be able to talk about their role in relation to supporting 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.
Despite this being abundantly clear to me within an hour of co-facilitating a conversation with a group of peer support workers, 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, colonialism, and systemic oppression. These “concerns around liability” are also the basis for policies that discourage open discussions on these issues.
During the conversation with the peers, a peer supporter from a community-based organization, told me that if a peer discloses that 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 that it wasn’t necessarily related to their perception of the peer supporters’ capacity to have the conversation, but that it was about liability and risk, and that needed to be prioritized first and foremost.
In this instance, I hear “liability and risk” and I 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 colonial 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 oppress people with lived and living experiences from being able to use these experiences in a meaningful way and how it prevents people with lived and living experiences from being able to move up within a system that is built to keep them down.
“The system” has been built to keep these faulty views on risk and self-serving priorities upheld, 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 are well supported to 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 around the role that people with lived and living experiences play in the health and mental health workforce. Especially when we know peer supporters are ready and eager to play this role.
If we are going to consider actual 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 and include the perspective of people with lived and living experiences in the development of these policies. There’s no evidence to suggest that talking about death and dying increases the risk of someone dying (Dazzi et al, 2014). 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 conversations about death and dying.
In practicality, training, systemic practices, college codes of conduct, ethical obligations and organization expectations mean that clinicians will always respond in a certain way to these conversations. Typically, this involves hearing that someone is considering suicide, and 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 a means, whether that means is imminently available to me, and whether I intend to carry out the “act”.
For me, and for many others, this means that I simply avoid bringing up these topics (Blanchard & Farber, 2020). I don’t talk about thoughts of death and dying my weekly sessions with my therapist, I don’t call a crisis line to talk about them, and I don’t mention them to my doctor when we have conversations 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.
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 ideas in my head, without someone hitting the panic button when I do. Peer supporters are already creating spaces for these conversations – they’re building relationships with their peers based on mutuality, shared experiences, compassion, empathy, and trust. To suggest that peer supporters should be building these types of relationships, creating these safe spaces, 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”.
Because peer support practice is rooted in lived and living expertise, peer supporters should be expected to respond to peers’ disclosures about death and dying based on their lived experience. 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 to that question is rarely “I wish someone had said “thank you for telling me, I’m going to call 9-1-1” or “thank you for telling me, I’m going to tell my colleague now and they’ll come talk to you”, they shouldn’t be expected to respond that way.
The discussion that I co-hosted with peer supporters was attended primarily by individuals working for grassroots organizations and consumer-survivor initiatives – organizations that are founded on lived and living experience expertise and that are typically willing to try things outside the box because they know that 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 are the same organizations that are also vastly underfunded, and facing constant pressure from funders to conform to the way that the rest of the system is doing things. Because the 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 for the person they’re supporting), these peer supporters are having conversations about death and dying with their peers, and they talked to me about what those conversations looked like.
They described that if someone mentioned that they were considering palliative care in hospital, MAiD, hospice care and suicide, they would respond by saying “that’s valid – which one do you want to talk about today?”. They described that as people who have considered suicide themselves, they understand that considering death when you’re experiencing non-relievable pain is a normal response, and therefore they responded to these topics ‘normally’. They responded 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.
They described that the conversations are not easy, and that as humans with feelings and as people who care, they need to take care to regulate themselves and take care of themselves, so that they can show up for the people they’re supporting.
They also described feelings of love, care, and warmth for the people that they’re talking to within these interactions – they described making sure that there was authenticity and humanity present within these conversations so that people naturally feel safe, comfortable, and supported in being able to talk through the conversations that they want to talk through.
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 (Dazzi et al, 2014). We know clinicians are restricted from responding in ways that allow for exploration into these areas, because of legal and professional and obligations (Blanchard & Farber, 2020). But let’s refrain from allowing stigma and non-evidence-based assumptions to inform the role that peer supporters are playing in these conversations, and let’s stop imposing policies that restrict clinicians from responding a certain way onto peer supporters. 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 they need to enable peer supporters to participate in the work of saving lives instead of restricting them.
What would happen if we allowed trained peer supporters to participate in these conversations, and they were successful in helping to save lives? There’d be less of a need for clinical degrees for mental health providers, which would subsequently mean less demand for universities and professional colleges. It would also mean that people with degrees who have been given positions of power in policy, organizations and education would be forced to step aside to give these opportunities to people lived and living expertise, since their impact on the world around us was just as substantial as Mr. Big Degree’s. Finally, it would also mean that people with lived and living experiences (and not degrees) are recognized as worthy of moving up and making an impact in a system that is designed to keep them down. God forbid.
Appreciation
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.
References
Blanchard, M., & Farber, B. A. (2020). “It is never okay to talk about suicide”: Patients’ reasons for concealing suicidal ideation in psychotherapy. Psychotherapy Research, 30(1), 124–136. https://doi.org/10.1080/10503307.2018.1543977
Dazzi T, Gribble R, Wessely S, Fear NT. Does asking about suicide and related behaviours induce suicidal ideation? What is the evidence? Psychological Medicine. 2014;44(16):3361-3363. doi:10.1017/S0033291714001299
