Talking With Patients About What Matters Most to Them: The Serious Illness Care Program

Many clinicians don’t routinely have in-depth conversations with seriously ill patients to identify the goals and values of these patients and guide their care, palliative care experts have long noted. Many physicians report feeling frustrated by having to treat seriously ill patients who have never discussed what kind of care they want or don’t want. The lack of high-quality conversations with patients is considered a factor in too many patients receiving aggressive, non-beneficial end-of-life care that causes unnecessary suffering for them and their families. Black patients are disproportionately less likely to have such conversations with their clinicians. National consensus bodies recommend making these conversations with seriously ill patients routine and more comprehensive to address patients’ values, goals, and treatment preferences. To encourage such conversations, in 2016 the Centers for Medicare & Medicaid Services added specific Medicare billing codes to reimburse physicians for advance care planning conversations.

Background

The idea for the Serious Illness Care Program (SICP) grew out of conversations between Atul Gawande, MD, MPH, and Susan Block, MD, at Ariadne Labs, a center for health systems innovation at Brigham and Women’s Hospital and the Harvard T.H. Chan School of Public Health, according to Erik Fromme, MD, MCR, a palliative care physician and senior scientist at Ariadne.

When Gawande was researching his 2014 book “Being Mortal,” he wanted to know what he could learn from palliative care providers who focus on patients’ experience of their illness rather than solely on their medical condition and treatment. Block suggested that instead of just talking to his patients about treatment alternatives and associated risks, he should ask them four questions:

• How much do you know and how much do you want to know about the future with your illness?;
• What are your most important goals if your health worsens?;
• What are your biggest fears and worries about your health?; and
• What tradeoffs are you willing to make to have a chance at more time?

A month or two later, Gawande called Block to tell her that he’d been asking his patients those four questions and that it had totally transformed how he related to them, Fromme said.

“Most clinicians and health care administrators would say it’s important not just to know the disease but to understand the patient’s values and priorities, particularly when the treatments you offer can come with side effects and may not work,” Fromme said. “But it remains a big challenge to engage patients in this way. One element is time, and the other is the tendency to wait until the patients are out of alternatives to talk to them.”

Ariadne Labs developed a structured conversation guide based on Block’s and Gawande’s insights. It began testing the Serious Illness Care Program in 2012.

Following randomized controlled studies showing that the program produced significantly more documented discussions with patients, Ariadne Labs began training clinicians and other health care staff around the country and internationally. To translate the research protocol into a sustainable program, it partnered with several health care organizations including Baylor Scott and White Health, University of Pennsylvania Health System, Lowell General Hospital, Lahey Health System, and the University of Liverpool in England, Fromme said.

Since 2014, 238,000 clinicians have received training, and about five million patients have participated in SICP conversations, according to Stacey Downey, associate director of Serious Illness Care at Ariadne Labs. Ariadne has worked directly with more than 50 health systems in the U.S., as well as with health systems in Great Britain, New Zealand, Singapore, and Sweden.

One cancer patient who participated in regular serious illness conversations with Fromme explained why she sees this approach as a valuable addition to traditional interactions with clinicians.

“The specialists are all in silos and the interactions are quite transactional,” said Rachel, a 70-year-old patient at Dana-Farber Cancer Institute and Brigham and Women’s Hospital who didn’t want her real name used. “They follow certain protocols to get the information they need to treat my illness. But it leaves me, as the patient, feeling objectified.”

“Dr. Fromme works in a very different way. He wants to know what your experience is and how he can help to possibly solve whatever problem one is having, such as bothersome side effects to certain medications,” said Rachel. “He gives encouragement and support to ask the oncologist or cardiologist the questions you want to ask. His approach is asking [his patients], what do you need to improve your day-to-day life — that’s very welcome.”

Intervention

Participating health systems provide their physicians, advanced practice practitioners, and other staff who interact with seriously ill patients with training in the use of the SICP Conversation Guide. Palliative care specialists or other clinicians with expertise in conducting these conversations offer additional coaching to staff as needed.

The health systems make the Conversation Guide responses accessible to staff in their electronic health record, along with a template for documenting the results of each conversation.

Ariadne recommends that health systems select patients whom providers are worried about for serious illness conversations. Some systems identify patients by having clinicians answer the “surprise” question: Would you be surprised if this patient died in the next year?

Duluth, Minnesota-based Essentia Health, which launched its SICP early last year, selects patients who are flagged as having at least a 20% chance of hospital readmission, said Wanda Paulsen, Essentia’s program manager for advanced care planning and serious illness care. She added that patient identification varies somewhat between different departments, such as oncology and cardiology.

Using the Conversation Guide, clinicians and staff ask their patients a series of questions to elicit their willingness to discuss their illness, their understanding of the prognosis, and their goals and priorities as the illness progresses.

In a training video based on an actual patient experience, Fromme, working with an actor playing the role of a patient with a serious respiratory disease, asked the following questions:

• Can you tell me your understanding of what’s been happening with your health and what matters to you?;
• Can I share my understanding of what might be ahead with your health?;
• If your health was to get worse, what are your most important goals?;
• What are your biggest worries?;
• What activities bring joy and meaning to your life?;
• If your illness was to get worse, how much would you be willing to go through to get more time?; and
• How much do the people close to you know about your priorities and wishes for your care?

Fromme said these conversations help clinicians as much as patients, especially in situations where the evidence doesn’t clearly demonstrate a superior treatment option and the choice depends on the patient’s priorities.

Rachel found her serious illness conversations with Fromme valuable in making decisions as her condition advances. “He laid out a framework for thinking about what treatment one might choose if one has a choice,” she said. “Any day I have to be in the hospital is a day I don’t get to feel I am a semi-normal person. Those discussions were very helpful to me in terms of thinking through any decision I might have to make.

Implementation

Early last year, Essentia Health started SICP training, through videoconferencing, for physicians, advanced practice practitioners, and other staff in hospital medicine at St. Mary’s Medical Center in Duluth, Minnesota.

“We wanted to redesign care so that knowing and honoring patients’ priorities is the norm,” Paulsen said. “Some of our providers have shared how surprised they are that using such a structured approach can lead to such a deep level of conversations in such a short amount of time.”

System leaders hoped the program might help reduce hospital length of stay and increase earlier use of hospice care. Essentia’s population health department is studying that.

To date, Essentia has trained 221 clinicians, case managers, social workers, and chaplains in SICP practice, spanning hospital medicine, elder care, oncology, and cardiology. The system is also teaching it to its medical residents.

Staff can either pull the Conversation Guide up in the Epic EHR or use a laminated pocket version. When clinicians in the hospital want to see what a patient’s care preferences are, the highlights of the conversation can easily be retrieved through a smart module in the EHR, Paulsen said.

Using the Conversation Guide and the skills they are taught, providers are better able to stay on track in these often-emotional and difficult conversations, and not have to worry about what to say or how to say it, Paulsen said.

“Some of our providers have shared how surprised they are that using such a structured approach can lead to such a deep level of conversation in such a short amount of time,” she said.

Fromme agreed that using the guide can help clinicians move beyond their nervousness and not have to think about the next thing to say. “I pull the guide out and patients can see I’m reading off of it,” he said. “They can see the questions aren’t personal, that these are questions we ask all the patients. The conversations go quicker and I think they’re better.”

Based on this early success, Essentia is now expanding the program to all providers who care for patients with serious illness, including in oncology cardiology, and primary care. One reason for bringing primary care providers into the program is that having serious illness conversations with patients earlier might avoid low-value hospital admissions.

Serious illness conversations also help in getting patients to complete their advance care planning documents, Paulsen added. “It’s a nice dovetailing,” she said.

Essentia is offering SICP training to nurse practitioners, physician assistants, chaplains and infusion nurses. A multidisciplinary approach has advantages, she said, because everyone then understands how to have serious illness conversations, which might take place during family conferences or case management.

While Essentia has not hired additional staff to operate the program, Paulsen said the system’s leaders would like to know the benefits versus the time-related costs of staff training in SICP. “We’re seeing so many benefits that we’re hoping to continue to move forward,” she said.

Paulsen said staff are trained in use of the two Medicare billing codes for advance care planning. One metric of whether clinicians conducted a meaningful conversation is if it lasted at least 16-minutes, which is the minimum requirement for billing Medicare.

Those codes have helped health systems justify their investments in SICP even though the payment levels are modest, Fromme said. Prior to that, there was no specific funding mechanism for any palliative-care-related services, he added.

Fromme said Ariadne has developed a digital self-learning module to make SICP training faster and more convenient for busy clinicians and health care organizations with fewer resources that serve lower-income and more diverse patient populations. “In making this easier to implement and less costly, our goal is to make it more accessible to more people with fewer resources,” he said.

Impact

A randomized clinical trial of SICP in outpatient oncology at Dana-Farber Cancer Institute found that a significantly higher percentage of cancer patients in the intervention arm had a documented discussion, the conversation occurred more than two months earlier, the conversation was significantly more comprehensive and patient-centered, and it was more accessible in the electronic health record, according to a 2019 JAMA article.

The same authors reported in a separate 2019 JAMA article that patients in the intervention arm of the trial had significant reductions in moderate to severe anxiety and depression after a serious illness conversation. They found no significant impact, however, on goal-concordant care and peacefulness for the patients.

Clinicians who participated in SICP at 14 primary care clinics for high-risk patients at Brigham and Women’s Hospital reported high satisfaction with the training they received, according to a study published in Health Affairs in 2017.

Among patients with advanced cancer who participated in serious illness conversations with clinicians who used the serious illness conversation guide, 79% reported it as worthwhile, and 56% reported feeling closer with their clinician, according to a study published in Cancer Medicine in 2020. Nearly 90% of the clinicians said the guide facilitated timely, effective conversations, and 70% reported increased satisfaction in their role.

A study published in Healthcare in 2020 found that patients in Brigham and Women’s Hospital’s primary care clinics who had a serious illness conversation had billed Medicare expenses that averaged about $4,000 less during the last three months of their life compared with patients who did not have a conversation.

“It does potentially save money, but that’s an ancillary benefit,” Downey said. “This isn’t a cost-saving program. It’s about eliciting what’s most important to the people you care for.”

Paulsen said Essentia has documented over 1,600 serious illness conversations since launching SICP early last year. The goal is to have at least 70% of providers who have received the training document at least five conversations each year. “We’re pretty happy we’re really seeing this become part of our care,” she said.

Insights

Leaders must be committed to making SICP part of standard practice.

“Where we’ve seen the greatest engagement is in groups where the leaders set expectations that this is how we’ll care for patients,” Paulsen said. “We have some providers who feel they do this already. Their leader would say, ‘You haven’t hit five yet. That’s been key.”

Ariadne continuously works with health systems to make adoption of SICP easier, cheaper, more accessible, and less time consuming.

“Once you’ve trained everyone, you’re not done,” Frommer said. “There is staff turnover. You have to keep a cohort of teachers. There is scheduling. We’ve done a lot of modifications to streamline the program and make it something any health system can do. But it’s challenging and difficult to sustain.”

It’s helpful to monitor who is having conversations and who is not.

“If you can get past the early adopters and get to the middle adopters, that’s when you start seeing momentum build and you see real transformation in the culture of how clinicians see patients and their care,” Fromme said.

Some non-physician staff may be better than some physicians at having serious illness conversations.

“My oncologist is a scientist and I’m not saying scientists can’t be relational but that is not her strength,” Rachel said. “She has a clinical nurse who absolutely has those skills, and I prefer meeting with her. She’s able to provide something the oncologist is less adept at.”

Black and Hispanic patients may disproportionately benefit from SICP.

Even though Black patients historically have been less likely than white patients to have serious illness conversations with their physicians, “it hadn’t really occurred to us that this would disproportionately improve conversation access for minority patients,” Fromme said. “But in several cancer centers the rate of conversations increased more for minority patients than for white patients.”

Acknowledgements

Thank you to Stacey Downey, Dr. Erik Fromme, Wanda Paulsen, and Rachel for helping to inform this blog post.

Author Harris Meyer is a freelance journalist who has been writing about health care policy and delivery since 1986.