By Linda Schwimmer
All this month, Conversation of Your Life (COYL) has been organizing gatherings to support people who want to talk about their end-of-life care wishes. I joined one of these events last week at a Tenafly senior center, where Mayor Peter Rustin, along with a lawyer and a social worker, explained health care proxy forms, advance directives, and DNRs.
As I listened at this and other events, one message kept coming through: give the gift of clarity to the people you love. Tell them what you want at the end of your life.
Don’t expect the medical system to figure out what you want — it can’t — and don’t wait for your doctor to bring up the topic. Polls show that patients seldom talk with their health care providers about their wishes for end-of-life care.
At the Quality Institute, our New Jersey Health Matters poll with Rutgers Eagleton, released Tuesday, Health Care Decisions Day, found that only about half of New Jersey residents have talked to anyone about their end-of-life care preferences — and just a quarter of those who talked to someone talked to their health care providers.
Medicare, Medicaid and other insurers now pay doctors and other health care providers to have these conversations — and still these discussions are not happening at high enough rates to ensure that New Jersey residents are having their wishes honored and respected.
What is the answer? Patients, families, and communities must take control. Together we must change the culture around death and dying. That’s what the Quality Institute’s COYL is trying to do. We’re bringing communities together in local libraries, recreation rooms, and senior centers. Residents are talking with subject matter experts such as nurses, social workers, and elder lawyers. They’re reading books, such as The Conversation: A Revolutionary Plan for End-Of-Life Care, by Dr. Angelo Volandes; watching movies, such as Frontline’s Being Mortal, and learning about the documents they need to protect their wishes.
We are making a difference, but not fast enough. New Jersey still ranks as one of the highest states (49 out of 50) in the nation in terms of intensive medical care at the end of life. According to the Dartmouth Atlas of Health Care, New Jersey residents spend 44 percent more days in intensive care units in the last six months of life compared to the average American. New Jersey residents also spend 30 more days in the hospital, and are more likely to die in the hospital.
People should know all their options, especially after Gov. Phil Murphy signed the Medical Aid in Dying legislation.
We often hear people say they want “everything” for a loved one at the end of life. But most people don’t understand what “everything” means. A leader in the field, Dr. Volandes educates patients about their options for life-prolonging care, limited medical care, and comfort care. He uses videos to show patients what aggressive care — feeding tubes, dialysis, ventilators, for instance — looks like for an elderly person in the ICU. He shares the videos in a neutral way and patients determine what options fit best with their values. Studies have shown the educational process enables patients to feel more comfortable with their eventual choice.
The culture change must include our health care system, too. Progress is being made, but more can be done, such as provider training through simulated conversations with “patients.” We also know electronic medical records and other technology is making it easier for people to document and share their wishes.
At the Quality Institute, we are not urging people to choose less or more care. But we do want people to know that in New Jersey if you don’t document your wishes you likely will get the default option of aggressive care in a hospital in your final days.
In Tenafly last week, the social worker, Naomi McDermott, told us how she often saw family members collide when an elderly loved one died without clear wishes established. One child wanted aggressive care for Mom or Dad while another didn’t. The friction caused unnecessary pain during an already difficult time.
Through COYL, we’re helping people give their loved ones the gift of clarity. Not talking about death will not stop us from dying.
Linda Schwimmer is president and CEO of the New Jersey Health Care Quality Institute, the only independent, nonpartisan advocate working to promote quality, accountability and transparency in New Jersey health care.