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Published on December 30, 2015

A new way to talk about deathA new way to talk about death

We plan for vacations, retirement and college educations. But most of us do not plan as well for our healthcare needs down the road; leaving heavy decisions for our loved ones.

A new community group will ask Cape Codders to think about those very things.

The Quality of Life Management Task Force was officially formed in December and is now led by VNA of Cape Cod nurse Tina Soares, RN, who has worked in public health and is certified in palliative care.

The group, which will meet again January 6 at Cape Cod Hospital, grew out of this fall’s Quality of Life conference, which was an attempt to get the community talking about death and what measures we want taken at the end.

“We should be thinking about this upstream, but often one does not think about discussing personal preferences when it comes to healthcare decisions,” Soares said in a phone interview. “More often than not the approach is reactive instead of proactive, leaving stress and burden on family and caregivers.  Planning ahead can help individuals and families have better peace of mind that their wishes are known and honored.”

Spearheaded by  Donald A. Guadagnoli, MD, senior vice president and chief medical officer at Cape Cod Healthcare, the conversation about “advanced care planning” has brought together people from throughout the community: doctors, nurses, and emergency management personnel; hospice and palliative care organizations; chronic-care and skilled-nursing experts; and religious, spiritual, and legal leaders, among others.

It comes at a pivotal moment. As of January 1, Medicare will reimburse physicians for discussing end-of-life issues with patients.

But Dr. Guadagnoli, Soares, and others believe the conversation has to be much broader, involve more people, and include what it means, for example, for an 85-year-old chronically sick patient to be resuscitated if his heart stops. The task force’s goal: that within five years, 90 percent of patients coming into the emergency room or physicians’ offices will have an end-of-life plan that is known to everyone involved in their care, including families, caregivers, pastors, and EMTs.

“We want to be clear going in: I want to be coded; I don’t want to be coded. … Yes, I want to be an organ donor; no I don’t want to be an organ donor. … The bottom line is to preserve choice and dignity,” Dr. Guadagnoli told a task force meeting in early December.

The task force, he said, needs to create a strategic plan for getting Cape Codders to talk about what are literally life-and-death issues and come up with a plan to address end-of-life care, particularly for chronically ill patients. Soares, whose official title at the VNA is program manager for quality of life management, welcomes input and can be reached at tsoares@vnacapecod.org.

The discussion at the December meeting, which included both medical and community representatives, reflected how disconnected things can be. There is, for example, no universal way for rescue workers to know when they respond to a home if there is a do-not-resuscitate order in place. In Cape Cod’s decentralized healthcare system, there’s no common repository of patient records or end-of-life wishes. Adult children may be unaware of a parent’s preferences.

“We see patients all the time who come through who don’t want to talk to their children. They don’t want their children to know how sick they are,” Soares said at the meeting.

The task force must bring about a change in culture, a “paradigm shift,” she said later.  It’s not just about death, she said, but about being responsible for your own health care. She sees herself as a facilitator and collaborator, creating community support for what we must decide as individuals.

“It’s OK for you to be autonomous making your own health-care decisions,” she said. “With so many changes, people have to be their own advocates. We can all work on this together to prevent poor outcomes at the end.”

Update:

We heard you! The response and feedback has been wonderful, we are thrilled to see so many Cape Codders engaged in the Quality of Life discussion. We’ve had several requests for additional resources, please find related links and information below:

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