End-of-Life Choice, Palliative Care and Counseling

Advance Care Planning Is a Subject Many People Prefer to Ignoreby Sonja

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By Alex Branch
Star-Telegram
September 9, 2012

Chaplain David Lowe has seen his share of grief-stricken family members at the bedsides of hospitalized loved ones in the final stage of life.

He has watched sons, daughters and spouses buckle under the pressure of difficult decisions, such as whether to keep that loved one on life support after doctors say they see no hope of recovery.

Those circumstances add extra stress and anxiety that, in Lowe’s view, often could be lessened if the patient and family had previously discussed what kind of care he or she wanted in those final days.

It’s why Lowe is promoting public workshops in Tarrant County this fall intended to help families prepare for end-of-life care options.

“When someone finds themselves suddenly in that role of decision maker during a major illness or hospitalization, it is laden with emotion and a very hard place to be,” said Lowe, director of pastoral care for the western region of the Baylor Health Care System. “I tell folks it doesn’t have to be that way. We want to move people out of the role of decision maker and more into a role of a spokesman, or an advocate, for their loved ones’ wishes.”

The Coalition for Quality End of Life Care, an Arlington-based organization, will present the workshops, which cover advance care planning, powers of attorney, wills, guardianship, funeral planning and financial benefits.

The workshops, which start Saturday, are free, though attendees are encouraged to register in advance, said Diane Wolfe, who is handling publicity for the events.

The subject matter is something that many people prefer to avoid, said Dr. Kendra Belfi, a recently retired Fort Worth internal medicine and geriatrics physician.

A 2008 report to Congress by the Department of Health and Human Services estimated that between 18 and 36 percent of the adult population had completed advance care directives.

“Advances in medical care and technology during the latter half of the 20th century have prolonged life expectancy in the United States,” the report concluded. “However, these same advances have blurred the boundary between life and death, challenging our expectations about how Americans could experience the end of life.”

‘Death-denying country’

Dr. Belfi said that for years she encouraged patients to consider advanced care at her practice. She asked them at the end of appointments if they were considering plans and kept forms available at the office.

More often, it was the patients’ children who were reluctant to discuss the topic, she said.

“We tend to be a death-denying country,” she said. “Even though 100 percent of us will die, no one thinks we will die. It’s a real challenge to convey the importance of taking care of these things now.”

Many people seem unaware that if they do not have an end-of-life plan, the state of Texas has a default one for them, Lowe said.

In most cases, a spouse or child is deemed the surrogate decision maker on care.

Those are usually the same people a patient would designate to make those decisions, he said.

However, his experience suggests that there is a big difference between fulfilling a loved ones’ expressed wishes and doing what you think they want.

“The people who have had those conversations with their loved ones, they don’t seem to have the same mental and spiritual burden,” he said.

Helps relieve burden

End-of-life care decisions are a common cause of tension among family members, Belfi said.

Here is a common scenario: A patient without an advance care plan is dying in the hospital and a child who lives near or with that patient is certain he or she knows what the parent would want. But then a sibling arrives from out of town and has different ideas.

It introduces hard feelings into an already traumatic situation, Belfi said.

“It turns into real family turmoil,” she said. “There are disagreements and emotions because it is a very traumatic thing to start thinking about this in the middle of a crisis.”

Lowe said that he urges elderly and young people to consider advance care planning.

While planning can help family members deal with the trauma of losing a loved one, it can never assuage the sorrow, he added.

“We can never rescue people from their grief,” he said. “You are sad when you lose someone; that’s part of being human. What this can do is help relieve that additional burden that comes with making these decisions.”