With no end in sight to the controversy about whether doctors should be paid to discuss end-of-life options with patients, we thought now was as good a time as any to review the possibilities for care before you die.
Only about a quarter of adults have advance directives in place. The term refers to two types of documents: a living will that instructs people what medical measures to take, if any, to prolong your life, and a health care power of attorney that designates someone to make medical decisions for you if you can't. States call these documents by different names, but their functions are similar.
On the relatively infrequent occasions when people do sign advance directive documents, they're usually thinking about what they would want in a crisis: a heart attack, say, or routine surgery that goes terribly wrong. Most of us don't think about the long, slow decline that may occur with Alzheimer's disease, for example, that robs people just as surely of their ability to make choices as a medical emergency.
They should, say experts. About 1 in 8 people 65 and older has Alzheimer's; it's the sixth leading cause of death in the United States, according to the Centers for Disease Control and Prevention.
For the past three years, Kathy Brandt has made medical decisions for her 85-year-old aunt, who suffers from dementia and lives in the nursing unit of a senior living community in New Jersey. Brandt, a senior vice president at the National Hospice and Palliative Care Organization, is in a better position than most to understand the importance of having a healthcare power of attorney.
She became her aunt's surrogate decision maker years ago when her aunt was still mentally competent.
Brandt works with medical providers at the facility to manage her aunt's care. As her condition has slowly worsened and she loses the ability to recognize family members or connect socially with others, Brandt recently changed her aunt's status to "do not resuscitate," so that medical personnel would not perform cardiopulmonary resuscitation if her heart stops or she quits breathing.
In making her decision, Brandt relied in part on conversations she'd had with her aunt years ago when another relative was bedridden and nonresponsive. "She basically said, 'There's no meaningful life there,' " Brandt remembers.
Meanwhile, there's no telling what decisions Brandt may have to make down the road. If her aunt got pneumonia, for example, "We'd probably give her antibiotics," says Brandt. "But if she had to be hooked up to a ventilator, I don't know."
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