Getting a discussion started on end-of-life care

In the national debate over how health care should be reformed, one critical question appears to be overlooked. How should patients be cared for at the end of their lives?

A recent national study also suggests that a system dedicated to saving lives is often ill-prepared for helping patients and their families when death approaches.
In September, a panel ap­­pointed by the Institute of Medicine, a research arm of the National Academy of Sciences, found that the nation’s system for handing end-of-life care needs sweeping change.

“The current system is geared towards doing more, more, more, and that system by definition is not necessarily consistent with what patients want, and is also more costly,” David M. Walker, the committee’s chairman, told The New York Times.

The group’s 507-page report called “Dying in America” encourages health-care providers to talk with their patients about advance care planning. That involves patients stating their wishes in writing on how they wish to be cared for in their final days. For many, those wishes include going home — rather than staying in a hospital — and having medical care that will allow them to be comfortable.

Without an advance care directive, families can face agonizing medical choices when their loved ones are unable to speak for themselves.

This type of discussion about end-of-life care led to the recent launch of two Virginia programs aimed at promoting advance care planning. Notably, both initiatives involve competing regional health systems collaborating in a common cause. Neither project involves any cost to consumers.

In late November, the Advance Care Planning Coalition of Eastern Virginia unveiled “As You Wish,” a program designed to promote advance care planning in Hampton Roads and the Eastern Shore.

The coalition includes four regional health systems — Bon Secours Hampton Roads, Chesapeake Regional Medical Center, Riverside Health System and Sentara Healthcare.

Their founding partners in the project are four area agencies on aging — the Peninsula Agency on Aging, Senior Services of Southeastern Virginia, Bay Aging and Eastern Shore Area Agency on Aging. They are leading the community awareness effort for the program, which offers an advance care directive form on its website www.asyouwishvirginia.org along with frequently asked questions and answers.

“Our goal is to educate the public about the value of completing and signing an Advance Directive for Health Care while you are still capable of doing so,” David Murray, the executive director of the coalition, said in statement announcing the program. “Individuals may want to have a conversation with family members, friends, doctors, attorneys or even their ministers or rabbis so they can make the right decision for themselves.” 

In December, the Richmond Academy of Medicine (RAM) launched Honoring Choices, a program designed to train health-care providers in starting a discussion with patients about end-of-life choices. RAM has contributed $100,000 to the program, which also has the financial backing and participation of three Richmond-area health-care systems: Bon Secours Richmond Health System, HCA Virginia and Virginia Commonwealth University Health System.

Thirty-two facilitators from the health systems began training last fall using Respecting Choices, a curriculum developed by Bernard “Bud” Hammes at the Gundersen Health System in La Crosse, Wis. In January, the facilitators will begin discussions on advance-care planning with patients at three sites in each health system.

The “Dying in America” report notes that people involved in a medical crisis often are treated by a number of health-care providers who don’t know them. Hammes, who attended the Richmond news conference unveiling Honoring Choices, said advance care plans help medical personnel understand patients who are unable to speak for themselves.

“What this program can do is really transform the health care system from one that focuses on diseases — because we don’t know who this person is — [to one that] focuses on people with diseases,” he said. “This makes care personalized and individualized.”

Hammes said families as well as patients  “suffer when we provide treatment they don’t want.”

“When families don’t know what the patient wants but are required by the circumstance to make decisions, they emotionally suffer and that suffering is quite considerable,” he said. “These are lifelong scars that family members bear. Sometimes these decisions tear families apart. These are all preventable problems.” 

In “Having Your Own Way: Getting the Right Care When It Matters Most,” a book published in 2012 about innovative approaches to end-of-life care, Sen. Mark Warner reveals his regrets that his family did not talk with his mother about her end-of-life wishes. She died in 2010 after suffering from Alzheimer’s
disease for more than 10 years.

“When she was first diagnosed … my family didn’t take the opportunity to talk in a frank and fully informed way with her and her health-care providers about the full array of care options,” Warner said. “I was an informed citizen at the time, the governor of Virginia, and yet my family and I did not have a full
understanding of all that could be before us.”

He wishes that his family had been able to craft a care plan that truly reflected his mother’s wishes. “As scary as it may be, we must be honest about care options, treatment settings and the planning that may dramatically improve the quality of life of patients and their family caregivers,” the senator said.

The As You Wish and Honoring Choices initiatives may help many Virginia families begin that difficult but sorely needed conversation.