A recent survey by Consumer Reports shows that nearly 90% of Americans prefer to die at home, focused on comfort, and yet 66% of Americans aged >65 years die in a healthcare setting, intubated and in considerable pain. According to Angelo E. Volandes, MD, MPH, Internal Medicine Physician, Massachusetts General Hospital, Boston, this misalignment between the medical care people want and the care 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. “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 therapy, yet fail so miserably when it comes to end-of-life care. The reason, he posited, is a lack of basic training. Although doctors are trained and certified to perform complex life-saving procedures, they are never trained in patient communication. But even words may not always be enough, he added.
“We created short videos to enhance the conversations that all of us need to have with our patients,” said Dr Volandes, noting that the videos last approximately 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 sacrifices quality of life to live as long as possible, and treatment may include all medical care that is available in a hospital, such as cardiopulmonary resuscitation, breathing machines, and intensive care. By contrast, with limited care, 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, and its main goal is to be comfortable. Treatments are used only if they make patients feel better and improve their quality of life. Patients who choose this approach usually receive treatment at home, at a hospice facility, or in a nursing home.
Promoting Informed Patient Preferences
Although all patients are provided information concerning their medical options, patients who view the goals-of-care videos see visual depictions of each of these categories of care, which leads to realistic expectations of disease progression and informed preferences for end-of-life care.
“To be clear, we’re not trying to nudge people one way or the other,” Dr Volandes said. “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 created these videos and studied 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 healthcare goals 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 preferences. Of the 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, 92% 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, adding 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?”