Advance Directives Said to Be Key

West Lebanon — A little more than two years ago, Bob Ellis and his siblings faced a difficult conversation with their mother.

She was 83 and frail. Her health had deteriorated significantly in the previous couple of months. She was lucid, however, and still could make decisions about her own care.

Ellis sensed it was time to sit down with his mother to write an advance directive.

“I realized it was important to start that conversation ,” said Ellis, who lives in Hanover and works for the Visiting Nurse Association in West Lebanon. “I thought it was the right thing to do.”

Advance directives are instructions on how to care for a patient who is no longer able to communicate decisions on his own. Similar to “living wills,” advance directives involve questions that literally relate to life and death: Under what conditions should the patient be kept alive? Does she want to have life-support treatment? What should the doctor do if the patient sustains permanent and severe brain damage?

Beyond instructions for care, advance directives typically require patients to name someone to make decisions on their behalf — a “durable power of attorney” or “health agent” — if they should become incapacitated.

State laws governing advance directives vary, but generally involve both of these aspects.

Often, people make legal arrangements to divide their possessions after they die, but “just as important is deciding what happens to you if you are still alive,” said Jessica Seman, an attorney who handles estate planning with Caldwell Law in Lebanon. Advance directives are important tools in the estate planning process, she said, and should be considered long before a person is near death.

“We’ve taken the position that it’s important to have advance directives at any age,” she said. “Because you don’t know what’s going to happen.”

Protecting the legal rights and desires of incapacitated patients is an issue that tends to receive attention with high-profile media stories, such as the saga of Terri Schiavo, the Florida woman whose husband for years battled her parents over whether to keep her alive in a vegetative state.

Yet, legal and health experts say the concept of advance directives remains largely misunderstood. Many people put off such decisions either because of concern about expensive legal fees or the difficult realities it may force them to confront. A 2010 survey by Johns Hopkins Bloomberg School of Public Health found that 66 percent of respondents did not have an advance medical directive even though a majority of people had preferences for their care if they were unable to make decisions.

Creating an advance directive does not require an attorney, Seman said. It can be as basic as answering a questionnaire and having it signed by two witnesses. The most difficult part tends to be having a conversation that involves the death of a loved one, said Shawn LaFrance, executive director of the Foundation for Healthy Communities in New Hampshire.

“People don’t want to think about it, to talk about it,” he said. “It’s a discomfort.”

Not everyone was ready for that conversation when Ellis approached his five siblings back in January 2011. One of his brothers chose not to participate, but the others agreed that it needed to happen.

So, Ellis flew to Chicago where his mother and the rest of his family lives and they sat down together and went through an 11-page booklet called “Five Wishes.”

The booklet, which is published by the non-profit organization Aging with Dignity, takes readers through a step-by-step process in which the patient chooses a “health agent” to make decisions about care when the patient is no longer able, answer questions about life support and the types of care the patient does and does not want. It also covers questions about level of comfort, how patients want to be treated (for example, would they like others by their side praying for them) and also encourages patients to write anything they want their loved ones to know.

Completing it took most of a morning, Ellis said. The experience was not only cathartic, in a way, but also likely saved his family additional grief when she died four months later.

“Had we not had it when the end came, there would have been six different opinions about what my mother would have wanted,” he said. “It mitigated a lot of grief for the family.”

As it was, their mother’s instructions gave her family clear direction on her care. Ellis believes the brother who chose not to participate in creating the advance directive later “felt like he missed a really good opportunity to have that closure together as a family.”

Creating the document is only the beginning, however, LaFrance said. Advance directives are “living documents,” which means they can be updated whenever someone wants. Also, patients need to make sure that copies are in the places where they will be needed then the time comes — a local hospital, primary care physician, the health agent and an alternate person if the agent is unavailable.

“You want the people who are most likely to need the information to have it available,” LaFrance said.

Local organizations will be distributing tools and information about advance directives at the Upper Valley Senior Center next Tuesday, which is National Health Care Decisions Day. There will be other information sessions about advance directives throughout the year, said Carol McShane, nurse case manager at TLC Nursing Associates in Lebanon, which is sponsoring those events.

“Picking up the tools is only the beginning,” she said.

Chris Fleisher can be reached at 603-727-3229 or cfleisher@vnews.com.