People often believe filling out such a form means choosing to die — no heroic measures, artificial life support or resuscitation, says Maureen Henry, executive director of the Utah Commission on Aging. "It can also be an opportunity to request it all. 'Yes, I want a feeding tube.' 'Yes, resuscitate me.' "
With predecessors to advance directives, there were concerns — some backed by actual events — that health care providers might read a notation about a directive in a patient's file and assume it meant DNR (do not resuscitate). Training and more familiarity makes that extremely unlikely now, says Stephanie Lucas, hospice family services coordinator for Homecare Hospice. Health care providers read the documents.
"DNR, by the way, says if my heart stops and I die, don't bring me back," Henry says. "It doesn't say don't treat me." If you get to the hospital without CPR, you can be put on a ventilator — unless your directive says otherwise. The directive is not political; it can be conservative or liberal. It doesn't mean you can't get a diagnostic test because you're DNR.
Chamberlain talked recently to a liver cancer patient who had learned just days before that his disease was not curable. He said he'd had a good life and just wanted to go home and be comfortable, surrounded by family. His wishes were honored. Every care provider interviewed by the Deseret News has such stories, as well as stories of patients who wanted every attempt made to save their lives. Their wishes were honored, as well.
Expressing what's important to you in advance can prevent disagreements among family members about what should be done. And patients can rethink their wishes again and again, as situations change. Sometimes, Henry says, it comes down to an educated guess: "How did she live her life? What would she want now?" It's important to pick the right agent — someone who will represent your wishes in spite of their own if there's a conflict. Once you have someone's permission to name them your surrogate, "talk to them and talk to them and talk to them and tell them what you want as you move through so they have an ongoing understanding of your preference." Preferences do change.
"We are bad at predicting how we would feel when we are in a different state than we are today," Henry says. "One reason we need an agent is we change our minds, in both directions. But usually we want more" care than we thought we would as disease progresses.
Joe sits on his deck when he's 30 and tells his friends he'd never want to be in a wheelchair or on life support or blind. "I'd rather die," he proclaims. When the time comes, he's apt to be more accepting — and adaptable — than he expected.
The best directive, says Dr. Michael Galindo, palliative care medical director at Intermountain Healthcare, is refined after a diagnosis, to meet what's likely to happen with the person's medical reality. The downside to advance directive is you can't make all decisions ahead of time, tailored to what actually besets you. "It's like pre-ordering dinner for a trip to Disneyland. You don't know what you will want. And maybe you won't even be hungry," he says.
Still, you know if you never liked roast beef.
Even if serious illness hits suddenly and the specifics can't be guessed in advance, having those conversations and doing the paperwork provides valuable insights for those who must try to divine wishes you can no longer express, Henry says.
"People come to the dying experience from a lot of different perspectives," Galindo says. "Some people have thought about it a lot and others have either not thought about it or we find, in some people, frankly, some degree of denial."
When it is discussed, planning is possible, he says.
Silence isn't golden
Still, doctors are "notoriously reluctant to discuss a realistic diagnosis with a patient," says Chamberlain, who calls his specialty, palliative care, the "black crows" because they will say someone is dying in a society where most act as though talk of death can summon it. He cites a recent study that found half of doctors won't tell a patient he's dying of his end-stage heart disease.
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