My father-in-law is 92 and my mother in-law is 86. Both are active and healthy. Not long ago, our Conversation of Your Life (COYL) program sponsored an event near their home in Fort Lee and I asked them to join me.
We had dinner first and my mother-in-law, who has a keen sense of humor, said we could have a conversation but not that conversation. Talking about end-of-life issues can test the best of us. Yet after dinner we nonetheless gathered in the packed Tenafly Library to listen to Dr. Angelo Volandes, the Harvard physician who argues for patient rights, especially at the end of life. My father-in-law raised his hand with more questions and interest than I expected.
We stayed up late that night talking and my in-laws eventually shared their end-of-life wishes with me. The next day they called to say, “Thank you.” My husband and I are grateful that our role, perhaps one day, will be to carry out the wishes my in-laws made for themselves — not to figure out what we think they would have wanted. They gave us an extraordinary gift.
COYL, which is supported by funding from the Horizon Foundation for New Jersey, is now in eight counties helping other families have these valuable conversations, and we’re moving into six more counties. We started COYL because data shows that too many people in New Jersey do not die the way they want to die.
Solutions to improve end-of-life care in New Jersey do not require a scientific breakthrough or new billion-dollar drug. We have the ability right now to make a difference.
At the Quality Institute, with support from The Nicholson Foundation, we’ve put together a plan that we know can improve end-of-life care for New Jersey residents and families.
You can read our End-of-Life Care Strategic Plan for New Jersey here. Our plan outlines how more people can have their end-of-life wishes honored. Right now, we have a disconnect. For instance, a poll we conducted with Rutgers Eagleton found that 63 percent of New Jersey adults have thought about their wishes for medical treatment near the end-of-life. Yet 60 percent have no written documents expressing those preferences.
Here’s what our plan calls for:
- Technology. We need a financially sustainable statewide electronic Practitioner Orders for Life Sustaining Treatment (POLST) registry so patients’ documented wishes are easily available to providers whether the person is in a nursing facility, an ER, ICU or at home.
- Payment reform. We must reimburse providers for having these valuable end-of-life consultations in Medicaid and the State Health Benefits Program. In addition, we must rethink reimbursement rates for palliative care.
- Education. We need to equip our health care workers with training about how to have these difficult conversations. That means physician and nursing education during medical training as well as throughout a health care professional’s career.
- Culture. And, finally, we need to change the culture around end-of-life care and take the conversation beyond the doctor’s office and into the community. We’re doing that with Conversation of Your Life (COYL). COYL involves community leaders, clergy, social workers, public health departments, senior centers and libraries, and county surrogates.
The plan is a call to action for all of us. Together, we can make New Jersey a model for delivering the type of care that people want at the end of life. Our plan is organized into four sections and shows how all of us — doctors, nurses, health systems, state leaders, community members — can take action. Please read our plan and see where you or your organization can make a difference.
One day, your in-laws may thank you.