Published on January 13, 2017

End of life planning: The conversation continuesEnd of life planning: The conversation continues

Sometime in 2015, Cape Cod Healthcare Chief Medical Officer Donald Guadagnoli, MD, decided it was time to get real about the conversations we have around death and dying, and he set a goal: To change the way Cape Codders think about how their lives might end.

A little more than a year later, the idea is catching on. The initiative has become a collaboration among healthcare and emergency service providers to help both patients and caregivers understand the important issues and documents that affect not only where, but also how we die. And that has led to an even broader understanding among members of the Cape’s year-old Quality of Life Management Task Force that talking about the end of life will improve medical care for Cape Codders at all stages of living.

“My goal is that over 90 percent of people that come into our facilities will have advanced care directives,” Dr. Guadagnoli told members of the task force at its one-year anniversary meeting in December. “We can’t eat the elephant all at once but I think we have at least bitten a few bites out of the elephant.”

The task force, led by VNA of Cape Cod nurse Tina Soares, RN, includes doctors, nurses, emergency management personnel, hospice and palliative care representatives, chronic care and skilled-nursing experts, elder advocates, and religious, spiritual, and legal experts. It has been working for the last year on a strategic plan to encourage Cape Codders to talk about end-of-life issues and to train facilitators to help them to do just that. The task force is also working to make sure staffs at hospitals, assisted living and skilled-level nursing facilities and emergency medical services are trained in documents and options. It is also in the process of creating a system where caregivers and families have access to patients’ wishes.

Soares is proud not only of the progress that has been made, but of the way competing health organizations have come together in a community effort.

“We’re helping individuals develop that road map so they can make good healthcare choices throughout life,” she said.

The task force has achieved some major goals this year, she said, including:

  • Developing a strategic plan for engaging and educating the public. The next phase will be developing education around advanced-planning documents and training people to lead discussions about chronic care and end-of-life decisions.
  • Finding the best source for healthcare planning documents. The five important documents include:
  • A personal directive that outlines your wishes and goals
  • A healthcare proxy (appointing someone to be your healthcare agent and make decisions if you can not)
  • A durable power of attorney (for making financial decisions)
  • Medical orders for life-sustaining treatment or MOLST (such as feeding tubes); and a comfort care/do not resuscitate order (usually for advanced-stage patients).

The task force has partnered with Honoring Choices Massachusetts, a MetroWest nonprofit founded by attorney Ellen M. DiPaola, as a source for the best versions of those documents.

DiPaola, who spoke at the task force’s last meeting, grew frustrated in her work as a guardianship attorney, particularly when older couples ended up in court because they lacked the proper authorizations to make healthcare decisions for each other.

“These people had no sense what their rights were, or that they could have done a healthcare proxy or that they had the right to say to a doctor and the other, ‘this is what I want for care,’” she said.

DiPaola works with healthcare and community organizations throughout the state developing tools for end-of-life discussions and care.

The Cape task force also recommends the documents developed by The Conversation Project, a nationwide organization focused on end-of-life planning.

  • Making sure patients, families and healthcare organizations can understand each other. “Our focus is really trying to streamline resources and tools we can use so that everyone is using the same language and everyone has a more comprehensive understanding of healthcare planning,” Soares said. End-of-life planning certainly existed on the Cape before the task force, she said, but was often inconsistent or confusing. Patients, for example, might not have understood they did not have the option to say they wanted to be resuscitated but not placed on a ventilator.

Next, the task force wants to widen its membership to include groups such as veterans and non-English speakers and make this year’s National Health Care Decisions Day in April a chance to involve the public. The task force will also host training for physicians in February focused on advanced directives, MOLST and comfort care/do-not-resuscitate orders.

DiPaola makes the point that healthcare planning is not just for older people – anyone over the age of 18 is entitled to make their own healthcare decisions and should have planning in place.

“If we do not start to have these conversations earlier,” she said, “We are going to stay on this road of being in crisis and people not being able to get the care they want.”