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The new heart association advice takes aim at this problem. It urges:
An annual talk between heart failure patients and doctors to set treatment goals for the present and for possible emergencies such as cardiac arrest.
"Milestone" reviews after any big change such as hospitalization, a defibrillator shock, worsening kidney problems or dementia.
Discussing not just survival gains but also potential problems from devices or treatments, such as side effects, loss of independence, quality of life and obligations on families and caregivers.
Considering palliative care, which does not mean stopping treatment.
The goal is "not only living long, it's living well. People often make decisions about the `long' without even considering the `well,'" said Jessie Gruman, president of the Center for Advancing Health, a patient advocacy group. The heart association asked Gruman, who has had several cancers and a heart problem, to review the advice from a patient's perspective.
The worst thing is to have no plan or clear goals when an emergency occurs, she said.
"The person who's ill may not have particular cognitive clarity and the caregivers may be upset and exhausted. They just haven't thought it through -- they haven't had a chance to think it through. They've never done this before," Gruman said.
Mary Jane Eaton has thought it through. She's 80 and lives in Aurora, Colo., just east of Denver. Twenty years ago, she had a new heart valve put in that is leaking now. She has heart failure and chest pains, probably from clogged arteries. After talks with her cardiologist, Dr. Jennifer Dorosz, she has decided to treat her fluid buildup with higher doses of water pills and not have any more tests or surgery.
"I can't see that I could go through that," she said. "At my age, I just figure you know what, when the Lord's ready for me, he's going to take me. And I don't want to be taken on the operating table."
Heart Association: http://www.americanheart.org/
Heart failure info:
Copyright 2012 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.
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