Make your own end-of-life decisions with peace of mind

Posted 9m ago

When faced with an end-of-life decision, ask questions, seek out answers and share your thoughts to "reach the best possible solution," experts say.

By Cathy Lynn Grossman, USA TODAY

Every day, says hospital ethicist Dawn Seery, someone tells her: "I don't know what to do. I'm afraid everyone will be angry."

When it comes to discussing end-of-life decisions, most people are unprepared, confused and frightened. Most of all, Seery says, "they want to know how they can recognize and decide when 'enough is enough.' "

Seery, chairman of the ethics committee that provides consultation service for five San Antonio hospitals under the Methodist Healthcare System, teaches a monthly community class she calls "Conversations before the Crisis."

She tells the class the best that people can do is to talk about their end-of-life preferences while they still can.

"Tell your story. Talk about your life experiences, how you've made tough decisions in the past, and share these stories. Families should tell each other what they feel, what's important to them. And tell their doctors as well."

Seery also tells a story, with the patient's permission:

"Every winter, a woman with chronic lung disease is hospitalized with flu and spends many days on a ventilator while she gets antibiotics. One year, she was on the vent so long, the doctor had trouble removing it.

"She told him she feared she would never take a normal breath again. 'What would you do,' she asked the doctor, 'if I told you next time, if I'm still on a vent by Day 11, stop and just keep me comfortable?' "

"The doctor said: 'I cannot do that for you. I would never do that.'

"She fired him. She chose a doctor who would listen to her wishes and respect them."

All patients have the right to do the same, Seery says. Her advice:

•Find a doctor who understands your values.

•Write those values down.

•Give your health care proxy — the right to make decisions for you when you can't make them for yourself — to someone you trust to know and uphold your values?

But there are limits to planning, says Farr Curlin, a palliative and hospice care physician, who is assistant professor of medicine at the University of Chicago's Medical Center and its MacLean Center for Clinical Medical Ethics.

"We are not very good at estimating our quality of life in a condition we don't have."

People might say they want a DNR ("do not resuscitate" order) years ahead of time, but, he says, "lots of people are glad to come back from the edge of death and do the work that needs to be done, perhaps reconciling with family and friends."

Still, many doctors are not good at giving bad news. Telling someone the diagnosis is dire, Curlin says, is "a real art to do well. It's not as simple as: 'Hey, face it, you're going to die. Get over it.' Not everybody wants the cold hard facts. They don't want you to rub their nose in it, but they don't want to be deceived, either. They want an honest conversation."

Curlin says that if people really want to know a doctor's frank assessment of their prognosis, they should ask for it.

If the answers are vague, keep asking or ask someone else. You can't make the decisions that are right for yourself — or anyone else — if you don't actually know the facts, he says.

Questions he suggests asking your doctor:

•Tell me straight: How long do I realistically have?

•Realistically, what can I expect in terms of symptoms and process?

•What if I go Route A or Route B?

•What do you think I should do and why?

Then "you can reach the best resolution in a terrible moment," says Rona Bartelstone, senior vice president of care management network SeniorBridge, who has spent decades helping families make such decisions.

Looking at all the information available and making the best decision you can, she says, will give you "peace of mind, the comforting awareness that you did what was right as you knew it."
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