New Tools to Improve End-of-Life Care Decisions

Kate M. O'Rourke


November 25, 2015

Can short films and conversation guides improve dialog about end-of-life care decisions between patients and clinicians? According to researchers who spoke at the 2015 Palliative Care in Oncology Symposium, the answer is yes.

Fewer than one third of patients with end-stage medical diagnoses discuss end-of-life preferences with physicians

In patients with serious illness, studies have shown that high-quality communication with clinicians is associated with enhanced goal-concordant care, improved quality of life, higher patient satisfaction, more and earlier hospice care, better patient and family coping, eased burden of decision-making for families, and improved bereavement outcomes.[1,2,3,4,5,6] Studies have also shown, however, that many seriously ill patients do not have timely conversations about their goals, and the conversations that do occur are often subpar.[2] Fewer than one third of patients with end-stage medical diagnoses discuss end-of-life preferences with physicians.[3,7] In patients with advanced cancer, the first end-of-life discussion occurs a median of 33 days before death, and 55% of these initial discussions occur in the hospital.[2] Many patients do not have quality conversations about goals of care, said Angelo Volandes, MD, MPH an internal medicine physician at Massachusetts General Hospital.

Video Decision Tools

Several years ago, Dr Volandes was treating a woman, a literary critic, with widely metastatic cancer. He had a conversation with her about advanced care planning, discussing the risks and benefits of available interventions including intubation and cardiopulmonary resuscitation (CPR). He then asked her if he could give her a tour of the intensive care unit (ICU). During her tour, she was able to get the rhythm of the ICU; and, as fate would have it, there was a code blue. She was immediately whisked out but not before she caught a few glimpses of CPR.

"When we went back to her room, she looked at me and said, 'Words, words, words, I understood every single word you said before about CPR and comfort care. I am a professor of English after all, but I had no idea that was what you were talking about. It doesn't look like that on television,'" said Dr Volandes. "So often in healthcare, we as providers have these conversations with our patients, but they are thinking of the last episode of Grey's Anatomy or ER, where everybody survives CPR and where the miracle cure for their cancer is right around the corner."

Dr Volandes began taking other seriously ill patients on ICU tours. "What every patient and family member told me was that this was the most powerful and empowering experience that they had ever had and that they couldn't imagine making a decision without this tour," said Dr Volandes. Patient confidentiality restrictions made the tours short-lived, but Dr Volandes and colleagues, including Areej El-Jawahri, MD, an oncologist at Massachusetts General Hospital, started working on how they could recreate the powerful experience without breaking patient confidentiality.

The solution was to create short films that educate patients about end-of-life care and empower them to ask for the care they want. The first 3-minute educational video depicted three levels of medical care: life-prolonging care that involved CPR and ventilation, basic care with hospitalization but no CPR, and comfort care that provided symptom relief. Patients were given visual images of each of these care categories.

The investigators then launched a clinical trial that randomly assigned 50 patients with malignant glioma to either a verbal discussion about goals of care and preferences or the video after the same verbal discussion.[8] In the group that received only a verbal description, 25.9% of participants preferred life-prolonging care, 51.9% preferred basic care, and 22.2% preferred comfort care. In the video arm, no participants preferred life-prolonging care, 4.4% preferred basic care, 91.3% preferred comfort care, and 4.4% were uncertain (P<.0001). "In the group that had the verbal discussion and then saw a short video decision aid, not a single person wanted life-prolonging care," said Dr Volandes. "The overwhelming majority wanted comfort-oriented care. People were more informed and had less uncertainty."

In the group that had the verbal discussion and then saw a short video decision aid, not a single person wanted life-prolonging care

Bolstered by their preliminary success, they evaluated the video in other settings. The video was tested in 51 individuals who were admitted to two skilled nursing facilities.[9] Patients who saw the video were more likely to prefer comfort care (80% vs 57%) and less likely to prefer life-prolonging care (12% vs 33%). The video was tested in 200 older people who were asked about future care if they developed advanced dementia.[10] Individuals who saw the video were much more likely to prefer comfort care (86% vs 64%), less likely to want life-prolonging care (4% vs 14%), and less likely to be uncertain (1% vs 3%). The video was used with similar results in 23 surrogate decision-makers for critically ill adults.[11] "When the surrogates were making decisions about CPR using a verbal discussion, 78% said yes to CPR. When they watched the video, it was 41%," said Dr Volandes.

The video was remade using physicians with different ethnic backgrounds and in different languages, and researchers have launched a large trial of the videos. "Over the next 10 years, we are conducting large, pragmatic trials that have just started in two large nursing home chains, involving 600 nursing homes across the country," said Dr Volandes. "Half of the individuals get usual care, and the other half use the entire suite of videos. Over the course of 3 years, we are going to see where people die, who gets chemotherapy in the last month of life, and whether the care delivered is aligned with what the patient wanted."

According to Dr Volandes, the most ambitious video project is being conducted in Hawaii and led by Rae Seitz, MD, medical director of the nonprofit Hawaii Medical Service Association. The videos, in languages that Hawaiians speak including English, Tagalog, Samoan, Cantonese, and Japanese, are being used with 15 hospitals and 600 doctors in the Aloha state. "If you are getting chemotherapy in Hawaii, you are watching the suite of videos," said Dr Volandes. Halfway through the 3-year project, the data show that the videos decrease hospital death by 30% and increase hospice referrals by 25%. "Those are outrageous numbers," said Dr Volandes.

The Boston clinicians have also developed a short video defining and discussing palliative care. The video informs patients, for example, that palliative care is an extra level of support that can be provided along with regular medical care and that it can be used even in patients who have a chance of cure.

Clinicians not involved with the film research are impressed with the video decision support tools. Tony Back, MD, an expert in patient-clinician communication at Seattle Cancer Care Alliance and Fred Hutchinson Cancer Research Center in Seattle, Washington, said that the videos "have tremendous potential." Daniel Hinshaw, MD, a professor of surgery at the University of Michigan and a member of the palliative care program at the Veterans Affairs Ann Arbor Healthcare System Medical Center, noted that the project was evidence that "a picture is worth a thousand words."


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