‘How do you tell someone they’re dying?’ and other difficult questions – plus some answers
Wednesday’s St. Louis on the Air included the sort of conversation that often doesn’t happen as often or as early as it should among loved ones – the kind about planning for the end of life.
Joining host Don Marsh for the discussion was Cara Wallace, an assistant professor in the School of Social Work at Saint Louis University.
Her research focuses on overcoming barriers to end-of-life care as well as improving quality of life, and she also educates health-care students, professionals and the general public about facing issues surrounding death, illness, loss and grief.
Leading up to this year’s observance of National Healthcare Decisions Day, set for next week, Wallace offered her insights in response to a wide variety of questions from Marsh and from listeners related to advance care planning.
What is the No. 1 end-of-life issue to contend with?
I think it’s the conversation. I think it’s being open to thinking about, to talking about it, to planning for it. Because we are so often against those things, when we don’t prepare, we often aren’t aware of what we want during that time. And so if we’re waiting until we’re critically ill to make decisions, then we haven’t had time to really think about what’s important to us, and then we don’t achieve those things that are important to us.
What sorts of decisions need to be made?
One of the things that you want to think about is, if I were unable to make decisions for myself, who would I want to make decisions for me? Do they share the same values that I have? Do they know what kinds of things are important to me, like where I want to die or the types of care I’d like to receive, whether or not I would want a feeding tube, whether or not I’d want to be resuscitated.
How does assisted suicide factor into all of this?
I’m a member of the Gateway End-of-Life Coalition and we’ve chosen not to take a stance on that, regardless of where we are personally with that. But I think it boils down to people wanting control about what their choices are, and there’s lots of ways to get control by starting with the other conversation that we’re having here today, which is related to advance care planning and advanced directives. And really broadening that conversation rather than boiling it down to this politicized discussion about assisted suicide.
In what ways do doctors sometimes drop the ball when it comes to end-of-life issues?
It’s difficult to flip that switch to think about when getting better is not an option anymore. And I think it’s uncomfortable. This conversation is difficult and uncomfortable for a lot of people, and I don’t think that our health-care professionals are always exempt from that feeling of difficulty. … Often it’s easier for some people to brush by it or to think, “Oh, my patient’s not ready for this conversation, their family’s not ready for this conversation,” and to keep delaying it. And then when we start the conversation as late as we often do, patients and their families aren’t getting to much-needed resources like palliative care and end-of-life care in hospice.
How do you tell someone they’re dying?
It’s not always about just telling someone that they’re dying. You can talk about their goals of care, what they’re most concerned about, what’s most important to them in this time in their life.
How do you convince a family member who is in full avoidance mode to discuss their end-of-life plans?
I think it takes time. Many people think that advance care planning is something you do one time, that you sit down with your family and say, “What are your wishes, and what do you want?” But it’s really about it being a more ongoing process. Try to introduce the conversation in a non-threatening way, and you can make it about yourself and your own experiences, and why this is important to you, and let it grow. Give it time.
Do people generally have an accurate understanding of hospice options?
I actually did a recent study where we asked people who are already on hospice care, “What did hospice mean to you when you first learned about it as an option for your care?” And [the common] perception of hospice is that it’s death. It’s the end … people think of it as a place rather than a service. And they often associate it with the symptoms or the illness. And then following that question I asked people, “What does hospice mean to you today [while in hospice]?” And their discussion was completely different. It was [about] “the peace and the comfort and people who are taking care of me.”
How about the issue of wrapping up relationships?
Even past trauma can impact how people approach the end of their life. And I’d love to say that it’s all about wrapping things up. But often there are things that can’t be wrapped up and there are questions that can’t be answered. And I think part of the important work that many hospice social workers, nurses, physicians are doing at the end of life is just providing space – providing space for patience to think about or talk about the things that matter to them and providing space for those conversations to occur between families.
What can people do who have no close family?
Oftentimes we’re just afraid to ask the question, and sometimes it starts with just having those conversations with those that are close to us, even if they’re not family members, that might open the door to someone who would be willing to serve in that respect.
Listen to the full discussion:
What: National Healthcare Decisions Day open house event
When: 9 a.m. to 4:30 p.m. Thursday, April 19, 2018
Where: Alzheimer’s Association (9370 Olive Blvd., St. Louis, MO 63132; (800)-272-3900)
St. Louis on the Air brings you the stories of St. Louis and the people who live, work and create in our region. St. Louis on the Air host Don Marsh and producers Mary Edwards, Alex Heuer, Evie Hemphill and Lara Hamdan give you the information you need to make informed decisions and stay in touch with our diverse and vibrant St. Louis region.