A serious illness conversation is one of the most crucial conversations between a patient who is facing a life-limiting illness and their care giver, and yet data shows that they don’t happen as often as they should.
Also known as a goal-of-care conversation, a serious illness conversation highlights what matters most to a patient – their values and goals, as well as their wishes when it comes to their future medical care. Broaching serious illness conversations without an established relationship can be particularly challenging – for both patient and carer – yet this is often the reality when patients experience homelessness or substance use disorders are admitted to hospital unexpectedly.
“People with complex needs feel a huge mistrust, a lot of stigma, when they go to the hospital,” says Wendy Stevens, an advisor for the new Guide for Serious Illness Conversations with People With Complex Medical and Social Needs. “It’s like there’s a big neon sign saying, ‘This person is a less-than person’.”
Meanwhile compassionate care givers may just not know how to start the conversation.
“It’s often easier to just not talk about it”
This new guide provides a step-by-step approach for providers to introduce the conversation safely by centering the needs of the patient, with the ultimate goal of providing the health care that patients wish to receive.
“People want to know what to say – this is not a nice, comfortable topic to talk about”, says Wendy. “It’s often easier to just not talk about it. So I’m hoping that this guide will give people who are uncomfortable having these conversations some confidence, to feel like they have a resource for this particular situation, and hopefully they will refer to it.”
Developed by Wallace Robinson, Leader – Advance Care Planning, and Kelsey Antifaeff, RCSW, this trauma-informed, evidence-based guide is based on an extensive literature review and input from an Advisory Committee at Providence with representation from Urban Health, Internal Medicine, Palliative Care, Critical Care and VCH Community, and with valuable guidance from Wendy as a Peer Navigator with lived experience and the support of Indigenous Wellness & Reconciliation at Providence.
Learning how to make a safer space
The guide includes an overview of the principles that govern these conversations; the first, and most important being:
Be aware of the hospital context: Hospitals are seen as at-risk for many people and may be associated with negative experiences and/or institutional trauma. Before starting the conversation, check in with the patient to ensure they feel comfortable talking in that space and take steps to ensure privacy.
“Ask that person for permission to have that conversation at that time. Ask if they’re feeling up for it, if they have any in-the-moment needs – a glass of water, a coffee, that sort of thing. Asking permission shows the kind of respect we all deserve to be treated with. Giving the person other options as well”, says Wendy, who is currently the Peer Operations Coordinator for the Overdose Emergency Response Team at Vancouver Coastal Health. Much of her work is educating health care providers on stigma, trauma-informed care and cultural safety and harm reduction.
“When I do health care education sessions with health care providers, I remind them that whenever you’re in a room with your patients or clients, it’s not just you and that patient or client in the room – it’s you, your patient or client, as well as every bad experience that they’ve ever had with health care.”
We encourage all providers to review A Guide for Serious Illness Conversations with People with Complex Medical and Social Needs here and to share with your colleagues.