Ask yourself this: What will be most important to you when the time comes to die? We know it’s a tough question, and one that patients, their families and loved ones, and their clinicians may avoid discussing. The result of putting off this Conversation is that people often experience their final moments in a hospital room hooked up to machines, which isn’t what they would actually want. It needn’t go this way. A program we’re involved with at Ariadne Labs, a joint center of innovation between the Brigham and Women’s Hospital (BWH) and the Harvard T.H. Chan School of Public Health, has made good progress changing the way patients and their doctors talk about death so that, in the end, patients’ wishes and their experience are aligned.

When people do have this conversation, most describe the importance in the final moments of being comfortable, in familiar surroundings with loved ones nearby. However, if you ask physicians, nurses, and social workers who care for the seriously ill, most quickly recall seeing patients, and their loved ones, suffering in the hospital at the end of life because the experience is so technology-driven and medicalized. This happens in part because of the powerful interventions we now have that can forestall death. But, more important, it happens because patients, their families, and clinicians have not discussed end-of-life wishes or, when they have, because the conversation isn’t well-documented and readily available when caretakers need it.

Insight Center

To address this communication gap, the Ariadne Labs team asked “Why don’t these conversations happen?” and “What can we do to assure that they do?” The team identified a complex set of system failures that get in the way, from difficulty identifying patients who are likely to die soon to lack of training to overloaded physician schedules, and created a systematic, multistep intervention called the Serious Illness Care Program. The program includes intensive communication training for clinicians, centered on skills practice with trained actors standing in as patients. The primary tool is a structured and intensively tested conversation guide built around a set of questions clinicians should ask. These are very different from the sorts of questions doctors typically ask patients at the end of life which tend to revolve around treatment options. Instead, the guide suggests questions such as “What abilities are so critical to your life that you can’t imagine living without them?” and “How much are you willing to go through for the chance of gaining more time?” The program also includes guidance in identifying patients early, before crises occur, and documenting conversations, as well materials to help patients and families communicate about this difficult subject.

We launched the program in primary care settings, where we guessed that doctors’ long-term and trusting relationships with their patients would ease these conversations. We targeted the sickest and most complex patient in six BWH primary care practices and trained the doctors, nurses and social workers caring for them to conduct comprehensive, “upstream” conversations about patients’ values, priorities and goals and carefully document them. Almost three quarters of more than 200 patients identified had detailed conversations that were clearly captured in the electronic medical record. Analysis of this work is ongoing, but as we’ll see, efforts beyond primary care have already revealed the program’s positive impacts on a host of measures.

While initiating the program in primary care settings made sense, we discovered early on that confining it to primary care overlooked many patients who could benefit; a review of more than 350 deaths among BWH patients found that half of the most complex of these hadn’t been closely engaged with primary care, in large part because they had been cycling between the hospital, nursing homes and other care facilities. As these patients had been visiting the hospital at an alarmingly high rate, we reasoned that it would be valuable to engage with patients like these at the hospital, rather than just in primary care settings. The challenge was that, traditionally, end-of-life conversations within the hospital focus on medical procedures; more nuanced discussions about the patients’ goals and wishes tend to be deferred to the outpatient clinicians who know the patient best. Thus, we needed to design a program specifically for inpatient clinicians – the hospitalists who manage patients once they do arrive at the hospital.

We adapted our primary-care approach to develop the SAGE (Speaking about Goals and Expectations) program to engage hospitalists, who may be meeting patients for the first time, and whose needs and time constraints are quite different from primary care providers’. This required updating the program’s Serious Illness Conversation Guide and training to fit the new hospital context, including adding training cases and language to change the way that clinicians introduce the end-of-life conversation to patients and deliver the prognosis. We found that hospitalists needed help not only in identifying patients with whom they should have these challenging conversations, but in the specifics of the conversations itself. They also needed support to ensure rapid follow up with patients, families and primary care teams after the patient left the hospital. Managing this post-discharge transition, we found, was best done by a social worker who could assure both that information from the hospital discussions was transmitted to the external facilities and providers who might need it, and that patients and their families had a steady contact after discharge when returning to the hospital.

During the first year of this hospital pilot program, we identified 151 complex, seriously ill hospitalized patients and randomly assigned 80 to the SAGE program, with the remaining 71 patients receiving usual care. Of the 80 SAGE program patients, 100% had detailed and clearly documented conversations about goals and priorities compared with just 40% of patients in the usual care group.

In addition to the primary care and hospitalist programs, the Serious Illness Care Program has been implemented in oncology, nephrology, and numerous other settings at sites across the country. These sites share their challenges and successes through an online community called the Serious Illness Care Community of Practice.

Analysis of this work across primary care and specialties is ongoing, but the impact of the program has been analyzed in a randomized trial at the Dana-Farber Cancer Institute. In that trial, half of the clinician participants were trained in the program, while the remaining served as controls. Over 90% of patients in the trained practices had conversations, as compared to 70% of patients in control practices, and the trained clinicians’ conversations occurred on average three months earlier in the course of patients’ illness. What’s more, the discussions were more than twice as likely to be focused on the patient’s experience and wishes (95% vs. 45%), and retrievable from the electronic record (68% vs. 28%).  Finally, having the conversation lowered patients’ anxiety, and patients reported that their hopefulness remained steady, while their sense of control over medical decisions increased.

The impact of these conversations and the close connections facilitated by the social worker is evident in the story of a patient we’ll call Evelyn: An elegant 81-year-old woman with advanced dementia, Evelyn was hospitalized four times in eight months with confusion and recurrent infections related to her progressive Alzheimer’s disease. Before Evelyn started with the SAGE program, her devoted daughter had advocated for any treatment that might keep her mother alive longer. After careful discussions between Evelyn’s clinicians and the family that focused on Evelyn’s personality, sources of enjoyment, and known life priorities, as well as the trajectory of her illness, the family shifted the goals of her care from quantity of life to quality. Evelyn was content and comfortable in her final months, spending time with family, listening to music, and eating foods she enjoyed, rather than returning to the unfamiliar and restrictive environment of the hospital. Her daughter later reflected on the pivotal role of these discussions in helping to plan better for what lay ahead – in order to honor the things that were most important to Evelyn in her final months.