Becker's Clinical Quality & Infection Control

34 PATIENT EXPERIENCE How Mass General physicians are learning to talk to patients about dying By Megan Knowles A conversation guide can help phy- sicians learn strategies for some of the most difficult discussions they have as care providers — telling patients they are dying. Physicians can be so focused on trying to fix each ailment that "no one is addressing the big picture," particularly when ad- dressing patients who are dying, said Lynn Black, MD, a physician at Boston-based Massachusetts General Hospital. Dr. Black, along with hundreds of other physicians at Massachusetts General Hospital, are now receiving training to talk seriously with ill patients about their goals, values and prognoses. To practice these conversations, physicians use a script based on the Serious Illness Con- versation Guide. The guide has trained more than 6,500 clinicians across the globe since its 2012 inception, said Rachelle Bernacki, MD, as- sociate director of the Serious Illness Care Program at Ariadne Labs in Boston. Juliet Jacobsen, MD, a palliative care phy- sician at Mass General, serves as medical director for the Continuum Project, which works to quickly train clinicians to navigate through these conversations. To help physicians begin these discussions, Dr. Jacobsen gives them a laminated page with scripted language. e participants en- gage in role playing with professional actors, during which they tend to quickly experience communication difficulties. To solve these dif- ficulties, Dr. Jacobsen encourages physicians to allow more silence and respond to patients' emotions rather than only their words. e scripted conversation is significantly different from how physicians have been trained to talk with patients, Dr. Jacobsen acknowledged. However, the script does not intend to reach any decision or complete end-of-life paperwork. Rather, the scripted conversations serve as a way for physicians to step back from day-to- day problem solving and discuss the patients' understanding of their illness, their hopes and worries and their disease trajectory. Dr. Jacobsen's team suggests physicians use compassionate language to discuss a prognosis without asserting certainty. Some examples include saying, "I worry the decline we have seen is going to continue," or, "I worry something serious may happen in the next few months." e team plans to follow up with physicians aer the training to ensure they are having these conversations with patients, beginning with those who have been deemed likely to die within three years. Dallas-based Baylor Scott & White Health, Lowell (Mass.) General Hospital, Philadel- phia-based University of Pennsylvania and hospitals in 34 foreign countries are also beginning to roll out the conversation guide, Dr. Bernacki said. "Our goal is for every patient with [a] serious illness to have a meaningful conversation about what they care about, in every place," Dr. Bernacki said. n Study: Children's perceptions of their hospital stays differ from parents' By Megan Knowles P ediatric patients often disagree with their parents about their experience during hospital stays, according to a study published in Archives of Disease in Childhood. Study authors examined over 6,200 surveys distrib- uted across National Health Service hospitals in the U.K. in 2014. The survey targeted the experiences of hospital patients between ages 8 and 15. The surveys contained a section for parents and a section for youth, which could be completed by young patients themselves, their parents or by the patients and their parents together. Approximately 60 percent of the patients completed the youth section of the survey themselves, while 28 percent responded jointly with their parents. Although researchers found parents and their chil- dren tended to agree on the quality of pain relief the child received and the overall quality of the hospital experience, they tended to disagree on the quality of communication with hospital staff, involvement in deci- sion-making, feeling safe and having adequate privacy. "It's increasingly recognized that the best healthcare is based on a partnership between health professionals, patients and their families," lead study author Dr. Dou- gal Hargreaves of the University College London Great Ormond Street Institute of Child Health, told Reuters. Patient surveys should include children over age 8 and the questionnaires should be tailored for pedi- atric patients, the study authors suggest. The study authors are developing tools to share decision-making between children and parents and are working to cre- ate "child/young person-friendly" versions of patient experience surveys across various healthcare settings. "Being in the hospital can be an unpleasant and frightening experience for a child," Dr. Hargreaves said. "Listening to them shows that the way they feel is important to us, and it allows us to help them through their hospital experience." n

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