Case Study: Advance Care Conversations

Not knowing a patient's wishes for end-of-life care can lead to expensive and sometimes unwanted medical interventions. Gundersen Health System is trying to change that, by embracing a conversation around end-of-life care that is not about dying.

This article appears in the May 2013 issue of HealthLeaders magazine.

Editor's note: This piece is excerpted from a full case study that is available as part of the June 4 event, HealthLeaders Media Live from Gundersen Health System. For more information, visit www. healthleadersmedia.com/live.

It is human nature to avoid difficult conversations about dying. We often simply don't know what to say. Given the intimate nature of these discussions, they also require a lot of trust. That is why hospitals, health systems, and physicians have done a generally poor job of initiating meaningful, timely conversations with patients and their families about the difficult issues surrounding care in the final years of life.

In healthcare macroeconomic terms, a 2012 Wall Street Journal analysis found that Medicare spent 22.3% of its total annual hospital expenditures on the 6.6% of seniors (1.6 million) who died in one year. A major contributor to that expense is not knowing a patient's wishes for care, which can lead to often expensive and sometimes unwanted tests, procedures, and other interventions.

In smaller, more human terms, not knowing a patient's wishes for his or her end-of-life care can create heartbreaking choices for the family, says Jeff Thompson, MD, CEO of La Crosse, Wis.–based Gundersen Health System.

"You want something that's draining for the staff and family? Be at the bedside of an 80-year-old person who has been in declining health and now has a stroke and can't talk," Thompson says. "Now the family is saying, 'I wish I knew what she wanted.' The medical staff and the nurses are saying, 'I wish we knew what she wanted.' Nobody knows what she wanted. She didn't say. No one had the conversation and now people are just guessing. That's hard on staff. That's hard on the family."

Gundersen has succeeded in changing the mind-set of those in its own health system and the surrounding community by embracing a conversation around end-of-life care that is not about dying.

"Of course we're all going to die. We're not going to escape that," Thompson says. "But these conversations are about how are you going to live, and do you want to have a say in how you're going to live."

La Crosse now boasts rates among the nation's highest for advance care planning. As Atul Gawande, MD, wrote in his New Yorker piece "Letting Go," residents in La Crosse "have unusually low end-of-life hospital costs. During their last six months, according to Medicare data, they spend half as many days in the hospital as the national average, and there's no sign that doctors or patients are halting care prematurely. Despite average rates of obesity and smoking, their life expectancy outpaces the national mean by a year." An article in the Journal of the American Geriatric Society also found that:

• 95% of severely or terminally ill patients in La Crosse have an advance care plan, compared to the national average of 50%
•  98% of physicians are aware of the advance care plan, compared to a national average of 35%
• 98% of the time there is consistency between the known care plan and the treatment provided, compared to a national average of 50%

Having a conversation with patients and their families about end-of-life care wishes needs to happen at the appropriate time, with a member of the care team who is appropriate for the need, and with someone trained in the nuances of difficult conversations. The current norm for advance care planning is much less structured and much less effective, says Bernard Hammes, PhD, director of medical humanities and Respecting Choices® for Gundersen Health System.

"The standard approach in the past was to tell patients about advance directives, hand them a document or maybe a brochure, and then tell them that they need to fill it out," Hammes says. "That kind of simplistic approach clearly has not worked. The evidence is pretty overwhelming that it's outright failed to do much of anything."

A flaw in many medical communities is the idea that only physicians can have advance care conversations with the patient and their family. "Medical leaders have to get out of the mind-set that the docs are going to spend hours and hours a day having these conversations," Thompson says. "Our job is to lead on this, not to have all the conversations. We can encourage it. We can make sure the system is set up. We can review the occasional confusing case. You can answer the patient's questions."

Hammes adds that telling physicians they should do more is rarely an effective engagement strategy anyway.

"You actually have to create a structure in your system to make advance care planning part of the routine of care," Hammes says. "That new system has to both prompt physicians and be designed so it's realistic in demands on physician time. The role of the physician is to initiate the conversation. That takes an additional few minutes. Then the physician can hand that work off to someone on the team who can now spend 30 or 40 or 60 minutes having that conversation with the patient and family."

Effective communication regarding end-of-life care involves a carefully constructed series of at least three conversations:

First steps: The initial conversation is called "first steps," which is held with generally healthy adults by the age of 65. The basic plan would be to complete a power of attorney for healthcare to appoint a well selected and prepared healthcare agent and indicate, for example, when a serious, permanent brain injury would be so bad that the goals of care would no longer be to extend life. The first steps can be initiated by a physician (perhaps during a routine physician exam), one of the trained facilitators, or a larger community of trained coaches from churches or other local networks.

Next steps: The "next steps" stage is initiated for adults with a progressive, life-limiting illness so that the healthcare team can determine goals of treatment in the event of complications or bad outcomes. This stage of planning is for individuals who have a serious, incurable illness and may be suffering serious complications. The goal is to undertake disease-specific planning and determine when an outcome from a complication would be so bad that the goals of care would change. The next steps phase is handled only by Gundersen's trained facilitators in consultation with the physician team.

Final steps: This last stage is for those patients whose illness has progressed to the point that death is likely within 12 months. In those cases the facilitators and physician collaborate with the patient to develop a specific plan of care for medical orders, including a physician order of life-sustaining treatment.

When the physician perceives that the patient and family are ready to have an advance care conversation, the handoff goes to a specific team of facilitators depending on the stage of planning. At Gundersen, there are 70 active first steps facilitators, 10 next steps facilitators, and five last steps facilitators.

The staged approach allows each phase in the advance care plan to be discussed at a time that is most appropriate, says Carol Berra, RN, the lead next steps facilitator. These next steps conversations, she says, are discussions that involve at least three people: the patient, the facilitator, and "the primary agent," a friend or family member who has been designated by the patient to make medical choices for them.

"We explain that when you're sick and not feeling well is not a good time to have these conversations; it's when you're feeling well and relatively stable," Berra says. Timing is especially critical for the next steps conversation for those facing a potentially terminal illness, she says.

"We have found the conversation makes the most sense to a patient who is advanced in their illness but not yet appropriate for and accepting of hospice care," Berra says. "If a patient is too early in their illness, the situations presented in the next steps ACP do not make as much sense to them."

These steps are typically not handled by one facilitator in a close series of conversations, but more likely conversations by different facilitators over many years of care.

What supports the timing is that ACP takes place as a routine matter. If the concept is introduced individually and at random times, the patient might react with misconceptions about the reason for the discussion: "What do you know that I don't?" Berra says.

"We've made this conversation as part of our model of care," Berra says. "So lots of times that's easier for patients to accept when they just know we offer it to all of our patients at certain stages of their illness. So it's normalized."

Adds Hammes: "Every patient in our cancer center is approached about two months into their chemotherapy to undertake the first steps planning. It doesn't matter what their prognosis is. It doesn't matter what their type of cancer is. We want to initiate and say we approach all patients in our cancer center and we really prompt them and try to motivate them to take this one first step to do basic planning."

Even with a careful plan of care and good timing, an effective ACP program must teach the skill needed to have these conversations, Hammes says.

"Have you ever been in a situation where someone just told you they're very sick and you just don't know what to say?" Hammes says. "Our natural tendency is not to say anything. Physicians and nurses are often caught not knowing what to say and so they avoid the topic completely. Many people believe that they avoid the topic because of the content. My belief is that they avoid the topic because they lack any knowledge or skill in having this conversation. We have developed an expertise in this, training people to not only competently have these conversations but to comfortably have these conversations."

Physicians are trained to be direct and scientific, which may lead them to ask blunt questions of the patient, such as, "What do you want me to do if your heart stops?" Hammes says. Most patients are not emotionally equipped to make that leap, so the conversations start with finding common ground.

"You start out by asking if they have ever been in a situation where someone in their family or a close friend had serious medical problems and someone else had to make decisions for them," Hammes says. "And almost every patient has some story to tell about when [their] grandma died and there was a lot of conflict in the family."

The facilitators flip the question around and ask the patients what they learned from that experience and how it may help them in their own illness, Hammes says.

"Probably for the first time they say, 'Oh, well, I guess what I learned is that when families don't have these conversations in advance that things could really go wrong and it can really lead to a lot of unnecessary distress.' You're not lecturing to them. You have personalized it."

After the patient is engaged in the idea of having the conversation, the facilitators can get more specific, Berra says. "It starts with the patient talking about their understanding of their disease and what's happening with them right now. How has it changed their life? What are the complications they can expect or know about? What are their hopes for their treatment? So the nature of the conversation starts at a level that they are pretty comfortable with and then moves them into what might not be as comfortable."

In cancer care, for example, the facilitators ask patients about their understanding of their cancer, their goals and values or faith and experiences, and then go into specific scenarios that may happen as a result of their disease. "So it helps the patient talk about their illness," Berra says. "The conversation clarifies goals, values, and choices. It also helps the person the patient has chosen to make medical choices for them."

Reprint HLR0513-10

This article appears in the May issue of HealthLeaders magazine.