By 2030 an estimated 72 million Americans, 1/5 of the U.S. population, will be 65 or older, according to Kaiser Health News. Yet, while three out of four doctors believe it’s their responsibility to talk with patients about their end-of-life care goals, only one out of seven actually held these conversations, according to a recent survey by the John A. Hartford Foundation, California Health Care Foundation and Cambia Foundation.
The reason? Nearly half of doctors said they don’t know what to say, and less than a third are trained to talk with patients and their families about the end of life. When doctors don’t know how to balance their patients’ quality of life with its length, it’s only too easy to resort to tests and treatments. As a result, many people spend their final days shuttling in and out of the hospital instead of enjoying all the precious moments they can.
Patients can change this dynamic just by asking the right questions. This gives their doctors permission to talk about the benefits and risks of treatment and outline all care options including hospice. Only then can doctor and patient make treatment decisions together to match the patient’s personal goals, priorities and values.
These questions cover five major areas:
• My condition: Is my disease curable? Will it shorten my life? By how much? What’s likely to happen as it progresses?
• Benefits of treatment: How will this treatment help my condition? Will I be cured or will the disease come back? What are the odds either way? Will treatment return me to normal function?
• Burdens of treatment: Does this treatment have side effects? What will my quality of life be like during treatment? What activities will I have to give up? How much time will I spend in the hospital or going to doctors’ appointments?
• Other treatment options: What are my other treatment options? What happens if we 1) focus on slowing the disease without going for a cure? 2) focus on comfort rather than fighting the disease? 3) Do nothing? What about hospice?
• Doctor’s personal view: A 2014 study by physicians affiliated with Stanford University School of Medicine, Stanford Hospital and Clinics, and Veterans Affairs Palo Alto Health Care System showed that almost 90 percent of doctors would choose to forego aggressive treatment at the end of their own lives. Most would want to die gently with few interventions. So patients should also ask their doctors: “What would you do if you had my diagnosis and prognosis?”
By asking these questions early in the course of illness, patients can empower themselves to write their own end-of-life story and have more control over their last years, months and days of life.
Kimberly Callinan is chief program officer of Compassion & Choices, the nation’s largest end-of-life choice advocacy organization with 450,000 members nationwide. She has a Master’s degree in public policy from Georgetown University. Brad Stuart has been an internal medicine, palliative care and hospice physician for almost 40 years. A graduate of Stanford University School of Medicine, he was named to the 2013 HealthLeaders’ Media list of Top 20 national difference-makers and was profiled in Atlantic Monthly. Courtesy of American Forum.