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"These are people who are unable to recognize their relatives, they're bed-bound and they're now usually having problems with swallowing. This is a population where the burdens of hospitalization often outweigh the possible benefits," Teno said. "These patients actually do better when they stay in a nursing home," where caregivers and surroundings are familiar, she said.
For families and nursing homes, "it may be difficult to recognize that in fact, this person is in the dying process," said Dr. Michael Malone, medical director of senior services for Aurora Health Care, a network of 15 hospitals in eastern Wisconsin. His 87-year-old father, Wendell Malone, died in January of advanced dementia in a nursing home that managed his care without frequent hospitalizations.
"It provided dignity, it provided comfort for the family," and let him stay in a place and with caregivers he knew, Malone said.
Beth Kallmyer, who runs programs for caregivers for the Alzheimer's Association, said the most important thing is to have a plan in place, with legal documents like "do not hospitalize" directives, before a nursing home has to make a decision about whether to hospitalize someone or instead focus on comfort care and not try to prolong life.
"When the time comes, the family will be able to say, 'This is what dad wanted,'" Kallmyer said.
She and other experts offered these tips:
Involve patients in planning their care while they're still able to do so, and make sure wishes like "do not resuscitate" or "do not call 911" are spelled out in legal documents.
Develop good relationships with nursing home staff and attending physicians so they understand the family's goals of care.
Consider hospice care when seniors with advanced dementia are admitted.
Revisit and review the plan whenever there is a change in a loved one's status. Someone may not be end-stage when they enter a nursing home but that can change.
Seek advice. The Alzheimer's Association has a 24-hour toll-free number, 1-800-272-3900, with counselors to help families.
___
Online:
Medical journal: http://www.nejm.org/
State reports: http://www.LTCFocUS.org/
[Associated
Press;
Copyright 2011 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.
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