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"When someone in the elder care community talks about the end of life it can be less scary" than if a patient's doctor brings it up.
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Bringing End-of-Life Conversations Home

By Kim Flowers | Wednesday, January 14, 2015

“Being part of IHI’s Conversation Ready Community gave me a much better understanding of what we need to do in elder services to make care more coordinated,” and begin to initiate end-of-life conversations with older adults, says Kim Flowers, a social worker with the Elder Services of the Merrimack Valley (ESMV) in Lawrence, Massachusetts, and panelist at the Conversation Ready Seminar. ESMV, a community-based elder services/home care program, was the only non-hospital participant in IHI’s recently completed Conversation Ready Health Care Community. In this interview with IHI Content Development Manager Jo Ann Endo, Flowers talks about how her agency's commitment to the older adults in their community inspired ESMV to bring end-of-life conversations into people's homes.

Q: Why did Elder Services of the Merrimack Valley join IHI’s Conversation Ready Health Care Community?

In November 2013, Harriet Warshaw [of The Conversation Project] was the speaker at our annual meeting, at which ESMV’s Executive Director, Rosanne DiStefano, announced that end-of-life issues were going to be a focus for us in 2014. She asked me to put together a program for people in the community that would be like an “End of Life 101,” a five- or six-week program to help people understand the issues, including how to complete health care proxies. But she also wanted to develop a way for the community to get involved with The Conversation Project.

I attended IHI’s first informational call for Conversation Ready [before the Community started]. Almost everyone else joining that call was from a medical care provider organization. At first I thought, “Well, maybe this isn’t for us.” But, the more I thought about it, the more I realized that end-of-life conversations should happen further upstream, before the medical providers get involved, because when your doctor talks to you about end of life you presume there’s a specific reason [that is, patients might assume they are seriously ill]. When someone in the elder care community talks about the end of life, it can be less scary.

We decided that joining the Conversation Ready Community would be beneficial for us as an agency, and also for our community in the Merrimack Valley, including people who are not our clients. Part of why we joined the Community was because only other medical providers were involved in it. 

Q: Within your organization, were there some concerns about participating in the Conversation Ready Community?

Some people were unsure before they understood the focus of the work. However, we trained everyone in the agency on what The Conversation Project is all about, encouraging people to sit down with their families to talk about their own end-of-life wishes. I expected a lot of pushback, but all the evaluations after the training said, “This is really good. I’m glad that I’ve done this for myself.” Even the younger, 20-somethings said things like, “Now I know what this is like, so when I sit down with my parents, or my grandparents to do it, I can see that this would have benefits.” Since going through the conversation themselves, everybody in the agency has been on board with our work in the Conversation Ready Community.

Q: Did the experiences of other Conversation Ready organizations using The Conversation Project Starter Kit with their own staff help you make the case for doing the same in your agency?

Yes, especially because there were some organizations that hadn’t asked their staff to use the Starter Kit and they described finding themselves in awkward situations saying things like, “No, I haven’t done this myself, but you should do it.” I realized that we can’t ask people to have end-of-life conversations if we haven’t gone through the process ourselves. Going through it gives us credibility with our clients and helps us appreciate some of what it’s like for them to think about these issues.

Q: How did you adapt the Conversation Ready Community activities since you’re not a hospital or a health care system?

Our team focused on helping our clients complete a health care proxy. It’s hard to get people into even short-term rehab from the hospital if they don’t have a health care proxy, because the rehabs are very resistant to admitting them without one. That became a big driver for us because we want to make sure that everybody’s safe, has the care they need, and they’re not staying in the hospital longer than necessary. 

After clients complete a health care proxy, if they want to discuss their end-of-life wishes in more detail with our staff, I speak with them. I remember two referrals from case managers with clients who wanted to talk about their advance directives, but [the clients] didn’t feel like they could talk to their family members about it. It was really amazing for me to see that people really do want to talk about these issues. Both clients said to me, “This was really good. I feel like I can talk to my family now because I know what I want to do.”

Q: You didn’t expect those conversations to go so well?

Both of these particular people have mental health issues, and I wasn’t sure how I’d be able to engage with them. But they were very clear. They said, “This is what I want to do. This is how I want to talk to my family, but I don’t know how to do it.” Initially I thought they’d want me to tell them what to do, but it wasn’t like that. They knew pretty clearly what they wanted to do, and both of those situations worked out really well. 

Q: You gave them a chance to practice having an end-of-life conversation before they did so with their families?

Yes. I used what I learned from The Conversation Project Starter Kit. I asked them, “What’s important to you?” Both clients wanted to make sure they were the ones in control. Once we identified that, we discussed how much they wanted their families to be involved. Who talks to the doctor, you or them? We talked about their five wishes.

We’re educating people about the control they have. Most of our clients don’t feel like they have too much control over anything in their lives. If you’re elderly or part of a low income group or have mental health issues, you may not feel like you control much. Our mission is to help people to live as well as they can in the setting that they choose to live in. For us, our mission is to help our clients live at home and to die at home — if that’s what they choose to do. When we help people talk to their doctor about their end-of-life wishes, we help them have peace of mind.

Q: This clearly matters to you on a personal level. Would you say something about why?

Dealing with end-of-life issues was my introduction to the medical community. About 12 years ago, both of my parents got sick. They weren’t that old. My mom was 60, and my father was 64. They had cancer.

Once they started treatment, there was this constant stream of appointments, and things we had to do, and places we needed to be. It felt like my parents had no control. And none of us even thought to ask questions like, “Can you tell us what’s going to happen? Can we see if that’s what she wants?” Neither one of my parents felt like they had a voice.

The experience led me to change careers. I ran a computer programming software group for about 25 years. What I was doing was fine, but I realized there are a lot of people who are just going along because no one is there to advocate for them. I went back to graduate school, got my master’s degree in social work, and I have been here at ESMV for over 10 years.

With my parents, it started to feel like we were stuck on a medical treadmill without any way to get off. We couldn’t even take time to really assess the situation until it was too late. My mother had six hours of hospice care before she died. We didn’t know what hospice was until we got involved with it. At that point I said, “Why didn’t we do this sooner?” But you don’t know what you don’t know.

Q: What would you say to other organizations like yours about your Conversation Ready participation?

I learned a lot from hearing about the experiences of the folks in the hospitals. It helped me think about what would be most helpful [for our clients] if we, as the community agency, could get the ball rolling. How do we educate people about talking to their doctor about end-of-life issues? For example, most of our clients don’t know anything about the MOLST (Massachusetts Medical Orders for Life-Sustaining Treatment) form.

Being part of the Conversation Ready Community gave me a much better understanding of what we need to do in elder services to make care more coordinated. We really have an important role in the whole care process. It can be easy to feel as though there are those of us working in the community and then there are the doctors or the medical professionals in the hospital, and not view them as connected. Being part of Conversation Ready helped me to see all of us on a continuum of care instead of as two very separate entities. I think we have to see it that way for us to provide better care for our clients.

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