Why It Matters
Academic medical centers face particular challenges when trying to respect their patients' wishes for their end-of-life care, including often being seen as the health care provider of "last resort."
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End-of-Life Care: Doing the Right Thing for Patients

By IHI Team | Thursday, May 1, 2014

University of Kansas Medical Center Vice President of Performance Improvement Terry Rusconi is a participant in the IHI Conversation Ready Health Care Community. The goal of the Community is to help health care organizations become “Conversation Ready” — that is, to help them establish processes to understand what matters most to patients and families at the end of life, develop appropriate goals for end-of-life care, and to ensure that end-of-life wishes are respected and carried out.

Terry Rusconi

Q: Why did your team decide to join the Conversation Ready Health Care Community?

First of all, it is the right thing to do for our patients and their families. When you see patients get to the end of their life and they haven’t had end-of-life discussions and their families are having to make those decisions in a vacuum, it is just painful. Our organization is focused on providing the best care and service, and making patients partners in the process.

We are doing a lot of things really well, but this is one area where we have some opportunity. For probably five or six years, we have been doing real-time mortality reviews on every death in the hospital. One of the trends we’ve seen in the data recently is that we are not doing a great job at having discussions with patients and families about end-of-life goals of care early enough. So, the timing of the start of the Conversation Ready Community was perfect because we were getting the information that this was an area we can improve.
Q: Are you saying that some end-of-life conversations were happening, but not early enough in the course of someone’s care?

Absolutely. As an academic medical center, we have an unusual mix of patients. We have a lot of folks who are brand new to us, who transfer in for that last ditch attempt to treat their condition or save their lives. On the other hand, we also have long-term relationships with our patients with more chronic conditions, including some of our stroke patients, cancer patients, and CHF patients. I think especially with those patients, we just were not having those conversations way upstream in their diagnosis and treatment. So, even for those patients we see on a regular basis, we weren’t having those conversations with them and with their families until they were in for that last admission. And that just doesn’t feel right.

Q: Is it more difficult to have these conversations with the people you see most often?

It is! Let me give you an example. We are getting ready to build a new chapel, so we looked at a chapel of a recently built hospice here in town. I was there with one of our senior heart surgeons, somebody who has been in the business for 50 or 60 years. He was asking the administrator how their staff cope with the number of deaths they have in that hospice setting and she said, “We can cope because we don’t see death as failure. We see a good death as a success.” And she added, “I don’t think that is how it gets looked at in the health care setting.” When we were driving back from that visit, he and I got the chance to really engage in that conversation and he said, “She is absolutely right. My first surgical partner looked at every death of his heart surgery patients as a failure.” I think while you absolutely want to fight for people and you want to give them the longest, best quality of life you can, you also need to have those conversations early enough so people can truly communicate their wishes.

Q: In the pre-work for the Conversation Ready Health Care Community’s upcoming face-to-face meeting, the teams were asked to view the records of the last 20 patients who died in their setting. Would you tell me a bit about what you learned from your patient chart review?

We were able to go even deeper than that because of the mortality reviews we have been doing. We looked at an entire year’s worth of data and found that 75% of our patients were DNR [Do Not Resuscitate] at the time of their death, so at some point we had some kind of end-of-life discussion with them or their family members. Additionally, we found that 60% of those [with DNR orders] had a palliative care consult. However, 43% of those who had a palliative care consult had the consult on the day of death.

That was the biggest “a-ha” that I think we had. We have this great team, they are in the inpatient setting and the outpatient setting, and yet we still are not utilizing them or their skill set early enough in that process to know what a patient’s wishes were before the day of their death. It was hard enough to learn that we weren’t even having an end-of-life conversation at any point with 25% of our patients or their families, but to then learn that so many of the patients who had a palliative consult didn’t have one until the day they died, there is something just inherently wrong with that. Learning that was just a slap in the face for us.

Q: How is your data guiding your team’s course of action?

There are a couple of things that we have really been challenged to do. The first is to get at the root causes of why we haven’t been having those end-of-life discussions and learn those wishes earlier in the patient’s progression of care. We are trying to understand if there is something inherent in being an academic medical center [as to why those discussions don’t happen] because often when I talk to a physician — and even some of the frontline staff — I hear them say, “Patients are coming here for their last chance. We are their last hope for treatment for what they have.” Does that keep us from having those end-of-life conversations? Because physicians and staff tell me if they have those conversations, they feel like they are telling the patient they are giving up before we even start. So, how much of this is really driven by that whole academic psyche, our academic persona?

We also have an opportunity to start to spread what we learn across the state. About 35% of our patients are coming from outside the Kansas City area and 30% of the deaths that we reviewed were for patients admitted from outside our system. In other words, we are meeting many patients for the first time. Can we work with other institutions to help them start to have those end-of-life conversations [before they get to our facility]? Because I truly believe if we get better at that, a lot of the folks won’t even come here. They will be home and closer to their family and support network. Having end-of-life conversations with patients and their families can be positioned as, “We want to provide the best care possible for you and part of that is understanding your wishes. The reality of the disease you’re facing is that these questions need to be addressed at some point and it is a lot easier to have this conversation now while you’re able to answer them.”

I think the third opportunity we have is to increase our internal competency to have those conversations with patients and to identify the right people to have them. As good as all of our doctors are, some of them may not want to have, or be capable of having, those conversations, so why does it have to live in their world? Why can’t we task other people in the organization to have those conversations? Just like we have designated requesters for organ procurement, I think it is a skill set that not everybody has. How do we identify the folks that are really good at that and position them to be able to have those discussions?

Q: Are you drawing on some of those designated organ procurement requesters or learning from some of their approaches?

What we are trying to do right now is to find out who in the organization feels confident about having those kinds of conversations. We have an amazing palliative care team, but they have said they don’t want to be the only people in the organization that can have those conversations. They are extremely good at having those conversations, so how do we clone what they can do and build that competency — especially in programs that we know are high risk — and then eventually build those skills across the entire organization? 

Q: You indicated that if more organizations across your state get better at addressing end-of-life issues, then some patients might not ever come to your medical center. At the risk of sounding indelicate, does that then become a revenue issue?

At least right now, we are really blessed that we have more patients wanting to come to our medical center than we have available beds. At the end of the day, the answer would still be it is the right thing to do. We have patients and families coming in from as far across Missouri and as far across Kansas as you could get. They are away from their support network and away from home, and they often die within a day or two. So, the families have no real support other than the support that we can provide them. The system can do much better than what we’re currently doing.

Q: How do you make the case that improving end-of-life care is so important for health care organizations to focus on, especially when no one is mandating it?

The first reason, again, is that it is absolutely the right thing to do. We see what families go through at the end of life if they haven’t had those conversations. Another factor, as an academic medical center, is that we are teaching the future health care professionals, and if we can’t teach them how to have these conversations we are setting them up to fail. Our educational mission means we have that responsibility to help people get better at these conversations and, by doing so, I think we can change practice across the state. Finally, when you look at some of the stories that have come out of Gundersen-Lutheran and other places that have been on this journey longer than we have, they are impacting utilization that can really allow health care resources to be directed at prevention, at health optimization. Even though it is not necessarily being driven at a national level by policy, at the end of the day, we are all being charged to do more with what we have or with less, and getting better at addressing end-of-life issues would allow us to do that also. 

Q: Why is the Conversation Ready work personally important to you?

I was in a seminary for about three and a half years. I loved the academics and hated the politics, so I didn’t pursue that! But I have that passion that I picked up when I was doing my clinical pastoral education work. The chaplains here report to me, so I get to hear all these stories all the time and, at the end of the day, I want our patients to have the care that they want. Having these conversations early with them so people can make the decisions that are right for them is absolutely the most ethical and the most right thing we can possibly do.

In many ways, we are talking about changing culture. I think the academic culture is maybe even a little tougher than some other cultures to change, but a number of the organizations that were involved in the first round of Conversation Ready work with IHI are also academic institutions, and they are making progress on it and we can do it, too.

Q: It sounds as if you’ve been inspired by some of the organizations that have been on this journey longer.

One of the things that excited me most when I learned about this Collaborative was the fact that we wouldn’t be on the journey by ourselves — we would be on the journey with people who had a lot of expertise, a lot of passion, and had a vision for where we could be. Just being surrounded by like-minded organizations and people with that level of commitment to making change makes the journey easier. Nobody has the perfect answer, but between all of us we are going to come up with much better answers than any one of us alone could do. This is absolutely where we belong.

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