Across the United States, millions of individuals face serious, life-limiting illness like cancer, heart disease and stroke, respiratory disease and diabetes. The final year of life with serious illness can be filled with emotional distress and uncertainty about treatment options.
When people with serious illness have conversations with their doctors and nurses about their personal values, goals, and what might be ahead with their illness, they are more likely to receive the care they want, feel less distress and report better quality of life. However, only a third of patients in their last year of life report having these conversations and, often, they happen too late in the course of illness to fulfill their most important wishes. Experts agree that all patients with serious illness should have these conversations; we need a new approach to assure that all patients are able to reap these benefits.
A new study shows that an innovative communication program developed by Ariadne Labs and tested at the Dana-Farber Cancer Institute resulted in more, earlier and better conversations between patients and their oncology clinicians, and led to significant reductions in emotional suffering for patients with advanced cancer. On average, patients and clinicians had a serious illness conversation 2.4 months earlier -- almost five months before death. The conversations were centered on what matters most to patients, with 90 percent of patients discussing goals and values.
As a result of the intervention, the proportion of patients with moderate to severe anxiety and depression was reduced by half, and the anxiety improvements were sustained for at least 24 weeks. The study was unable to demonstrate whether the conversations resulted in care that aligned with patient goals, or brought about greater peacefulness at the end of life. The intervention did not impact survival rates.
The findings of the four-year randomized control trial of the Serious Illness Care Program were published in two papers, one in JAMA Internal Medicine and the other in JAMA Oncology on March 14. The study is the first to demonstrate meaningful improvement in patients' mental health symptoms from a structured communication intervention implemented by oncology clinicians, rather than palliative care or psychology specialists. In addition, the study shows that a multi-component intervention, using tools, training, and systems-change strategies can address the most common barriers to communication in a clinical setting and improve the quality, timing and occurrence of patient-centered conversations.
"We know how beneficial patient-centered conversations are, and our goal is to ensure that they happen for all patients, earlier in the course of illness and focus on what matters most to the patients," said study author Dr. Rachelle Bernacki, associate director of the Serious Illness Care program and a palliative care doctor at Dana-Farber Cancer Institute. "These results are exciting because they show us that more, better and earlier conversations are possible and they can reduce symptoms of depression and anxiety in our most vulnerable patients."
Achieving these results with clinicians outside the field of palliative medicine -- where such conversations typically happen -- is particularly important, said study co-author Dr. Joanna Paladino, who leads implementation of the Serious Illness Care Program at Ariadne Labs. "We have a dire shortage of palliative care clinicians in the United States and many patients who would benefit from patient-centered, safe and gentle serious illness conversations. What we found is that with communication skills training, a structured conversation guide and system-level support, we can equip many more clinicians to have these conversations."
"Effective and meaningful communication is one of the most important tools of good-quality medicine, especially when patients are dealing with challenging health issues. We believe that this intervention addresses this need for patients, and also supports clinicians by making it easier for them to have these conversations, through providing them with supportive tools to have what can often be very tough conversations," said Dr. Susan Block, founding chair of the Department of Psychosocial Oncology and Palliative Care at Dana-Farber Cancer Institute; Professor of Psychiatry and Medicine at Harvard Medical School, and the palliative care specialist who led the creation of the Serious Illness Care Program at Ariadne Labs.
The centerpiece of the program is the Serious Illness Conversation Guide, developed by palliative care experts to enable clinicians and patients to gently and safely talk about the patient's prognosis and illness understanding, values and personal goals, fears and sources of strength, critical abilities that matter to their quality of life, and what they might be willing to go through for more time. Clinicians in the study received a 2.5 hour communication training with palliative care experts on how use the guide, followed by supportive coaching. The program also has patient and family conversation tools to prepare patients for conversations and support ongoing discussions with their family at home.
The program's system changes were designed to support clinicians in having the conversations, including routine identification of patients at high risk who would benefit from a serious illness conversation, reminders to have the conversation, and a template to document the conversation efficiently in the electronic medical record for the entire care team.
The program was tested with 91 doctors, nurse practitioners and physician assistants and 278 cancer patients at Dana Farber from September 2012 and June 2016. Half the patients took part in the Serious Illness Care program, while half in the control group received usual care.
No difference was found between the two groups in measures of goal-concordant care and peacefulness for patients who died. Researchers noted that these results reflect some of the study's limitations. The study had a smaller number of deaths than expected and fewer than expected survey responses from patients and families. Because of the limited sample size, researchers were unable to conclude whether the program was effective at improving these outcomes or if the outcome measures were appropriate.
"Our challenges reflect the urgent need in our field for patient-centered measures of communication that are agreed upon, validated, and demonstrably sensitive to communication interventions," study authors wrote.
To date, more than 13,500 clinicians have been trained to use the Serious Illness Conversation Guide and more than 300 organizations have implemented it. Ariadne Labs partners with health systems around the world to implement the program, including: Partners HealthCare and Brigham and Women's Hospital; Baylor, Scott & White Health in Texas; Penn Medicine; Lowell General PHO and Lahey Clinical Performance Network in partnership with BCBSMA.
"Effect of the Serious Illness Care Program in Outpatient Oncology," Rachelle Bernacki, MD, MS; Joanna Paladino, MD; Bridget A. Neville, MPH; Mathilde Hutchings; Jane Kavanagh, BA; Olaf P. Geerse BSc , Joshua Lakin, MD; Justin J. Sanders, MD, MSc; Kate Miller, PhD; Stuart Lipsitz, ScD; Atul A. Gawande, MD, MPH; Susan D. Block, MD. JAMA Internal Medicine, published online March 14, 2019, doi:10.1001/jamainternmed.2019.0077
"Evaluating an Intervention to Improve Communication Between Oncology Clinicians and Patients With Life-Limiting Cancer: A Cluster-Randomized Clinical Trial of the Serious Illness Care Program." Joanna Paladino, MD; Rachelle Bernacki, MD, MS; Bridget A. Neville, MPH; Jane Kavanagh, BA; Stephen P. Miranda, MD; Marissa Palmor, BS, MBE; Joshua Lakin, MD; Meghna Desai, MPH; Daniela Lamas, MD; Justin J. Sanders, MD, MSc; Jonathon Gass, MPH; Natalie Henrich, PhD, MPH; Stuart Lipsitz, ScD; Erik Fromme, MD; Atul A. Gawande, MD, MPH; Susan D. Block, MD. JAMA Oncology, published online March 14, 2019: doi:10.1001/jamaoncol.2019.0292
This study was supported by grants from the Branta Foundation, Charina Endowment Fund, Margaret T. Morris Foundation, Richard A. Cantor Fund, Partners HealthCare and the John A. Hartford Foundation.