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UVM research focuses on approach to end-of-life conversations

Published: Jul. 22, 2021 at 1:35 PM EDT|Updated: Jul. 26, 2021 at 2:53 PM EDT
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BURLINGTON, Vt. (WCAX) - Talking about death -- or the possibility of it -- isn’t easy. New research out from the University of Vermont takes a closer look at what happens during a conversation between a health care provider and a seriously ill patient. Research that might help train newer clinicians to prepare them for the tough talks.

“We do seek people out, we do provide them opportunities,” said Tom Paquette, a licensed social worker, who along with nurse practitioner Lindsay Gagnon, work at the Respite House in Colchester, a facility where some terminally ill patients spend their final days. Their conversations with families start by figuring out what they know about their loved one’s illness and making sure everyone is on the same page.

Reporter Cat Viglienzoni: Do you notice any patterns to the conversations or are they really unique?

Lindsay Gagnon: I think almost universally, people are grateful to have direct and honest information.

It’s a process that they and their Respite House colleagues repeat as the patient and their family navigate the complex process of saying goodbye.”If someone is here for a length of time, multiple conversations happen, sometimes even on a daily basis with different family members,” Paquette said.

It’s teamwork. Gagnon may field the clinical questions on the diagnosis and Paquette may ask questions that he thinks the family might need answering. An important step throughout the process: Asking how much information families want. “I think checking in each step of the way as we’re navigating, it gives people permission to step back and say, ‘it’s too much now,’ or ‘come back later,’” Gagnon said.

“There are people who -- their way of dealing with things is not to deal with them. And we are respectful of that as well. We are not in the driver’s seat. They’re in the driver’s seat. We are there as a resource,” Paquette said.

It’s intuition like that that some University of Vermont researchers are trying to quantify. “Conversation is an incredibly complex, dynamic process,” said Larry Clarfeld, who is the lead author of new research out from UVM’s Vermont Conversation Lab. He’s not a medical student. He has a doctorate in computer science but chose to study conversations between advanced cancer patients and their palliative care physicians. “It was one of the best decisions I have made in my academic career,” Clarfeld said.

His work breaks down those conversations not into what is being said but how it plays out in short and long turns. He looks for patterns that can be spotted quickly to analyze them on a larger scale and that can hopefully be developed into a tool that can help clinicians -- especially those in training -- pick up on social signals.

“What’s good for one patient isn’t going to be good for another. What we need to figure out is what are the conversational fingerprints that work in one context versus another,” Clarfeld said.

That’s something that Gagnon and Paquette -- with years of experience -- might do instinctively. But Gagnon says conversations in the medical world are often very clinician-based. When the patient needs to share what is important to them, seeing the patterns can be a helpful reminder. “I think it illustrates that need for the balance in the conversation and for clinicians to be mindful of listening as much, if not more, than the time that we spend talking,” Gagnon said.

Because Paquette says the patient often knows what they need. “Tell us what you’re thinking. You live in your body. Tell us where you are. Tell us what you’re feeling now that they are the experts in what’s going on,” He said.

CREATING ADVANCE DIRECTIVES CREATES ENTRY POINT TO CONVERSATIONS

Something that can help make those conversations easier for families to talk about death is if the person who is ill has an advance directive. It’s like a living will and it outlines what you want for your medical treatment in the future. That means if you’re not able to make your own health care decisions, your family won’t have to try to guess what you want.

“I think there are some patients and families where the patient has been very clear with their family what their wishes would be if they got sick and weren’t getting better. I think families take that with such relief that no matter what, they’re honoring what their loved one wanted. And on the other side, families and patients who haven’t had those conversations, it can cause a lot of distress and despair on ‘are we making the right decision,’ and caregivers’ families can feel like it’s now their decision to make. So, really trying to re-frame that for them on that you’re just speaking on your loved one’s behalf and what would they say,” Gagnon said.

Reporter Cat Viglienzoni: How important is it to have the whole family involved in that process?

Tom Paquette: Wow. As much as possible is really important, even if there are huge differences. In fact, sometimes especially if there are huge differences. This is hard. People are afraid they are going to make the wrong decision and there are multiple layers with their loved ones and with each other.

They say it’s also important to consider who will be carrying out the advance directive. It should be someone the person is confident will be able to follow those wishes, and that it’s worth considering having that in writing.

More people are setting them up. The Vermont advance directive registry tracked sign-ups for 10 years between 2007 and 2017. In that time span, nearly 40,000 people set up advance directives. You can set one up by following the instructions on the Vermont Department of Health’s website.

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