A recent survey by Consumer Reports shows that nearly 90% of Americans would prefer to die at home, focused on comfort, and yet, two-thirds of Americans over the age of 65 years end up dying in a healthcare setting, intubated, and in considerable pain. According to Angelo E. Volandes, MD, MPH, this misalignment between the type of medical care people want and the type they ultimately receive is the most urgent problem in American healthcare today.
“When patients end up getting unwanted care at the end of life, it’s a medical error,” said Dr Volandes, an internal medicine physician at Massachusetts General Hospital, in Boston, MA. “It is no different than a surgeon amputating a body limb on the wrong side of the body….But the crazy thing is we get paid for those medical errors.”
At the 2017 Palliative and Supportive Care in Oncology Symposium, Dr Volandes underscored the irony of a healthcare system that can conceive of immunotherapy and targeted genetic therapy but fail so miserably when it comes to end-of-life care. The reason, he posited, is a lack of basic conversational training. Although doctors are trained and certified to perform complex, life-saving procedures, they are never certified in patient communication. But even words might not always be enough, he added.
“We created short videos to enhance conversations that all of us need to have with our patients,” said Dr Volandes, who noted that the videos last about 5 minutes and are tailored for nearly 200 different types of illnesses and medical scenarios. “These videos empower patients and families to navigate a healthcare system that was created with the healthy patient in mind, not those with advanced chronic illness.”
The short videos outline the 3 medical care options for patients with serious illness: life-prolonging care, limited care, and comfort care. With life-prolonging care, the patient is willing to sacrifice quality of life to live as long as possible, and treatment may include all medical care that is available in the hospital, such as CPR, breathing machines, and intensive care. With limited care, on the other hand, a patient is willing to endure hospitalization and intravenous medication, but not intensive care.
“With this option, the focus is to take care of treatable problems,” Dr Volandes explained. “People who choose this approach want medical care that will help restore their health….They want to avoid treatments that will cause pain and suffering and are unlikely to help.”
The third approach is comfort care, the main goal of which is to be comfortable, he said. Treatments are only used if they help make people feel better and improve their quality of life. People who choose this approach are usually treated at home, in hospice, or sometimes in a nursing home.
Promoting More Informed Preferences for End-of-Life Care
Although all patients are provided information concerning medical options, patients who view the goals-of-care videos see visual images of each of these categories of care, which leads to more realistic expectations of disease and more informed preferences for end-of-life care, said Dr Volandes.
“To be clear, we’re not trying to nudge people one way or the other,” he explained. “We’re not trying to get the ‘do not resuscitate,’ and we’re not trying to supplant the doctor-patient relationship. We’re just trying to supplement it so that patients and families do not suffer.”
Dr Volandes and colleagues not only create these videos but also study them to assess their impact. In one trial, 50 patients with advanced brain cancer were randomized into 2 groups. The first group had a verbal discussion about their goals of care and then told providers their treatment preferences. The second group had the same discussion and then watched a short video that reviewed the goals of care. The results showed a dramatic change in patient preference. Of those patients who had a verbal discussion alone, 26% wanted life-prolonging care, 52% wanted limited care, and 22% wanted comfort care. After watching a goals-of-care video, however, a very different picture emerged. Ninety-two percent of patients wanted comfort care, with only 4% opting for life-prolonging care and limited care, respectively.
“These videos surmount communication barriers and ensure more patient-centered care that respects patient preferences,” said Dr Volandes, who noted that 97% of patients indicate that they would recommend these videos to a loved one. “When did 97% of patients ever recommend anything other than staying away from a doctor?”