The State of Compassionate Healthcare
May/June 2011
The State of Compassionate Healthcare
Experts discuss survey at symposium hosted by The Schwartz Center for Compassionate Healthcare.
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| Health Affairs Editor-in-Chief Susan Dentzer moderated the Schwartz Center Compassionate Care Symposium |
How do patients and physicians view the issue of compassionate healthcare? Is there a gap between the compassionate care that patients say should be provided and what they experience in their own lives? Can good communication and emotional support—the key elements of compassionate healthcare—have an impact on whether a patient lives or dies?
These were some of the questions included in a national public opinion poll commissioned by the Schwartz Center for Compassionate Healthcare, a Boston-based nonprofit with a simple, yet compelling mission: to promote compassionate healthcare so that patients and their professional caregivers relate to one another in a way that provides hope to the patient, support to caregivers, and sustenance to the healing process.
The survey was conducted in the fall of 2010 among 800 patients who had been hospitalized for at least 3 days within the past 18 months and 500 physicians who spend at least some of their time taking care of hospitalized patients. The findings provided the basis for a November 2010 symposium sponsored by the Schwartz Center about the state of compassionate healthcare in the United States. Among the poll’s major findings were:
- Both patients and physicians believe strongly that compassionate healthcare makes a difference in how well patients recover from illness and whether a patient lives or dies.
- The current healthcare system receives mixed grades on compassion, and a majority of both patients and physicians are concerned that the changes taking place in the U.S. healthcare system will make it even more difficult for caregivers to provide compassionate care in the future.
A panel of experts from different sectors of the healthcare system discussed the results from their diverse perspectives. Panelists included Maureen Bisognano, BSN, MSN, president and CEO of the Institute for Healthcare Improvement; Alice Coombs, MD, a critical care specialist and president of the Massachusetts Medical Society; Thomas Lynch, MD, director of the Yale Cancer Center, physician-in-chief of the Smilow Cancer Hospital at Yale-New Haven and Schwartz Center board chair; and Robert Restuccia, executive director of Community Catalyst, a nonprofit advocacy organization working to build consumer participation in the U.S. healthcare system. Health Affairs Editor-in-Chief Susan Dentzer moderated the forum.
Compassion Gaps and Disconnects
Dentzer began the forum on a very personal note. She told the audience of almost 300 people that her sister was suffering from late-stage lung cancer and was just days away from death, so the topic of compassionate care and the mission of the Schwartz Center for Compassionate Healthcare resonated deeply with her.
“This is a ‘no brainer’ for much of the American public,” Dentzer said. “Almost all patients believe that compassionate care is critical to their medical outcomes, and almost all doctors also believe that is the case. We know this issue resonates very, very deeply in a profound way that even transcends the research.” She went on to point out that “solid research does exist. This is not just an emotional, feel-good, squishy impulse. We can prove it.”
Bisognano, whose organization, the Institute for Healthcare Improvement, works to make healthcare safer and more effective, said that caregivers must be able to remove their professional mantle and simply talk to patients on a purely human level. “Don’t just do something, stand there,” Bisognano said, quoting a favorite aphorism of Linda Lewis, MD, the former dean of students at Columbia University College of Physicians and Surgeons. “Ask a nonmedical question, help patients live in the moment. Ask them what the best trip was they ever took in their life or what was the most fun they ever had with their children.”
Coombs said that as a critical care specialist, she often talks to patients and families about end-of-life care, but many patients never have these kinds of conversations with their caregivers. “Once physicians start an aggressive form of therapy, they often become locked in, believing that they must continue care,” said Coombs. “But physicians need to talk to the patient and family to find out what they really want.” Coombs said, “Doctors believe they deliver compassionate care, but when it comes to end-of-life care, we get a C–.”
Lynch agreed with Coombs that a significant “compassion gap” exists, particularly at the end of life. “That’s where the work of the Schwartz Center comes in,” he said. “This gap is where the Schwartz Center works, where it tries to make a difference.”
Restuccia said that he was surprised at how positive patients are about their hospital experiences overall, considering the care fragmentation that exists in the U.S. healthcare system.” “Looking to the future, there is opportunity,” said Restuccia. “We have people like Don Berwick, who are looking to create a healthcare system that is more rational and less fragmented. We need a healthcare system that is responsive to patients and allows caregivers to be more compassionate.”
Lynch said that despite what some people say, time is not the enemy of compassion, but rather our short attention spans. “Some of the most compassionate healthcare is seen in the ER and ICU, where physicians connect with patients they don’t know in a matter of minutes,” said Lynch. Lynch said it’s “lazy” to blame lack of compassion on a changing healthcare system.
Teaching Compassion
Panelists had a number of ideas about how to engender more compassionate care among clinicians. “I believe compassion can be taught and role-modeled,” said Lynch. “You can be taught how to talk to people, and we can train physicians how to interact, just like we train physicians on medical concepts.” Lynch added that current practitioners must also be included. “If all we do is focus on medical students, it will take 30 years to make changes to our system,” he said. “If we don’t reach mid-career caregivers, we won’t have a chance.”
Coombs spoke of the need for physicians in training, whether they be medical students, residents, or fellows, to do a “fellowship of suffering”—a metaphorical commitment to walk with a patient through thick and thin until the end of their journey. As did Lynch, Coombs stressed that as the United States becomes increasingly diverse, physicians will need to learn to understand and appreciate cultural differences, an important component of compassionate healthcare.
Bisognano pointed to several programs that are instilling students with a greater sense of compassion for patients. One at Hofstra North Shore-LIJ School of Medicine puts new medical students into ambulances with emergency medical technicians during their first three months of training, according to Bisognano. “The first patients these students see are in their homes or on the street,” said Bisognano. “Their first experience is as the lowest caregiver. They’re learning from the bottom up. It’s been transformational for the medical students.”
Bisognano also mentioned University of Pittsburgh Medical Center orthopedic surgeon Anthony M. DiGioia, MD, who assigns each medical student a patient who is having either a hip or knee replacement. “Students take the entire journey with their patients,” Bisognano said. “They learn about the patient’s pain, their dietary problems, their home environment, observing details as small yet vital as whether they have a ‘grab bar’ in their shower.”
Public Policy Solutions
Moderator Dentzer asked panelists what changes in public policy could strengthen the patient-caregiver relationship. Coombs pointed to the patient-centered medical home model, which ensures that “you’re never left out in the cold,” as she put it. “You have a care community, focusing on primary care, creating close connections between patients and caregivers. You don’t have to feel like you’re in a strange land.”
Lynch said he believes healthcare information technology plays an important role in improving care for two reasons: it gives clinicians easy access to current and accurate information about patients and facilitates “seamless” communication. In response to criticism that computers in the exam room get in the way of patient-physician communication, Lynch said, “We need to redesign exam rooms so the computer and the patient are in the same line of vision.”
Dentzer concluded the symposium by emphasizing the importance of compassionate care, noting that all Americans have a stake in it. “What we know is that compassion matters, there’s no substitute for it, there’s no time but the present to make our healthcare system more compassionate, and it’s never been more important,” she said.
Julie Rosen has served as executive director of the Schwartz Center for Compassionate Healthcare in Boston for the past 7 years and has worked in the healthcare field for more than 25 years. Prior to joining the Schwartz Center in 2004, she was an assistant vice president at Tufts Health Plan in Boston and executive director of the Conference of Boston Teaching Hospitals. She is a graduate of Tufts University and holds a master’s degree in human services management from the Heller School for Social Policy and Management at Brandeis University. She can be reached at jarosen@partners.org.
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In 1994, healthcare attorney Kenneth Schwartz, 40, was diagnosed with lung cancer. During his 10-month ordeal, he came to realize that what mattered most during his illness was the human connection he had with his professional caregivers. He wrote movingly about his experience in an article for the Boston Globe Magazine, “A Patient’s Story,” in which he reminded caregivers to stay in the moment with patients and emphasized how “the smallest acts of kindness made the unbearable bearable.” The piece has become a touchstone for the Schwartz Center and for patients and caregivers throughout the United States. At the end of his life, Schwartz outlined the organization he wanted created in his name, with a bequest from his estate. It would be a center that would nurture compassion in medicine—encouraging the sorts of caregiver-patient relationships that made all the difference to him. The Schwartz Center for Compassionate Healthcare’s signature program is Schwartz Center Rounds, now conducted at more than 200 hospitals, outpatient centers, and nursing homes across the country. The sessions provide a unique forum where caregivers from diverse disciplines can discuss and reflect upon the most difficult emotional and psychosocial challenges of caring for patients. In contrast to traditional clinical or ethics rounds, Schwartz Center Rounds focus on the human dimension of medicine. Caregivers discuss actual patient cases and share their experiences, thoughts, and feelings. Rounds make caregivers examine their prejudices, their feelings of loss when patients die, their frustration with “difficult” patients, and their beliefs about spirituality and religion, among other topics. The Schwartz Center’s other programs include: Clinical Pastoral Education for Healthcare Professionals. An intensive course for physicians, nurses, social workers and other clinicians that teaches them how to integrate spiritual caregiving skills into their practice. Grants. Financial support for projects that improve communications skills, especially in the areas of cultural competency, end-of-life care, and spirituality. Speaker Series. Educational programs for healthcare professionals that explore the most topical issues related to compassionate healthcare. The Schwartz Center Compassionate Caregiver Award®. An annual awards program that honors a caregiver who displays extraordinary compassion in caring for patients as well as award finalists. Honor Your Caregiver. A program through which patients can honor and recognize their caregivers for providing compassionate care. |
Rooted in the experience of one patient, the Schwartz Center for Compassionate Healthcare — based at Massachusetts General Hospital in Boston and online at