Not telling that truth robs patients of what time they have to do what matters or has been left undone. It prevents getting some options for help, like hospice care. And it may subject the patient to tests and procedures that are painful, costly and of little or no benefit.
Families often exhibit a similar reluctance to have tough conversations, both well in advance when the discussion could be less emotional and after a diagnosis, when the need could be urgent. Without them, it's hard to figure out what to do.
"I try to get important people into the room with the patient," Chamberlain says. "They need to hear from that individual what the wishes are." It won't change death. But it will change the journey and it makes a big difference for the family, he says. A man with a massive stroke can be put on life support or not. If he is and then has to be removed, "the emotional consequence is 'pulling the plug on dad.' It's a different experience if the patient has previously talked about it and says I never want to live like this."
A personal quest
For Jones, the issue is intensely personal. When her dad, Harley Workman, was dying, Jones and her mom, Lucille Workman, were never quite sure if he actually wanted the feeding tube that was placed. Like most families in a medical crisis, they were "already dealing with so many emotional things at the time."
In the hospital he'd asked, "Am I going to die?" He wanted real answers that everyone seemed reluctant to provide, his daughter recalls. "It's not a topic we want to be honest about," Jones says. "We have to be. A lot of people are getting tests they don't want or need."
Research shows while older people are willing to talk about death and what they want — they most certainly have thought about it — their kids aren't. "Now, when I'm gone...." "Oh, Mom, you're not going anywhere. Don't talk that way. …"
Myths and confusion
Over the years, Lucas has seen people use directives to ask that everything or nothing be done, and the spectrum in between, and to specify in which circumstances.
"Whether you take extraordinary measures or take no extraordinary measures, the family is relieved of concerns they're not doing what you would want. Most of us want to let those we love have the end-of-life experience they would want and not do things family members would not want to have done. But it's confusing when there have been no specific conversations," she says.
Hospitals see the confusion all the time, so they support efforts to get patients to do advance planning, Lucas says. Her company, Intermountain Healthcare, has put together advance directive books that patients can request. They also offer forms online that can be filled out and printed, then taken to the hospital.
Without paperwork that says otherwise, hands are seriously tied in an emergency, says Marty Peterson, emergency management director for North Salt Lake. When paramedics arrive, they look for directives. It's common to put advance directive paperwork in a frame above the bed, easily spotted. Emergency crews also look on the fridge.
If they find it, they call the hospital and say there's an advance directive — which may say do nothing, or do a whole lot. If there's nothing in writing, the crews have no choice but to try and rescue, which may increase the situation's pain factor. Sometimes, especially with frail elderly, ribs crack in CPR. Attempting to revive and transport is expensive. And people can exist in a persistent vegetative state for a long time, even requiring families to make the decision to remove life support later, with all the angst that may include, he says. Those who would be appalled at that should take steps to see it doesn't happen.
"We default to taking someone into the emergency room, even though we know that person's dead," Peterson said. That also happens when a family member, unwilling to accept death, demands it. He can detail real incidents when family division rears up, as well — cases where most of the family were at peace, then a relative further away and not able to see what's going on or who doesn't know a loved one's wishes demands the individual be taken to the hospital. It doesn't change the outcome but may add stress and complication, he adds.
It is a myth, he notes, that a paramedic who sees a DNR order would not help someone who was choking, for instance. "Paramedics want to help pain, ease suffering. I've never seen a paramedic see an advance directive and not do something about suffering."
As strongly as he feels about it, Peterson admits that he hasn't done all his own paperwork, either. Yet.
He's not alone. Even among the seriously or terminally ill, an AHRQ Report on Advance Care Planning found that fewer than half had a directive in their medical record. Of those who did, only 12 percent had received input from their physician to develop it, and three-fourths of doctors didn't know they had one. The study would have referred to a pre-2008, outdated living will, Henry says. But it's still suggestive.
Part of being an adult is making decisions, Jones says. "When death is an OK topic, the fear subsides. We all think we're going to live forever. We don't."
Editor's Note: Advance directive and end-of-life planning is an important and neglected topic. Families often shy away, and when crisis comes, relatives are left trying to guess what someone would have wanted. This week, Deseret Media Companies has joined a coalition to raise awareness about the issue, in conjunction with passage of SCR2, which asks Utahns to consider making their own decisions, appointing an agent and having those tricky conversations. The Deseret News and KSL TV will be running stories on the subject all week.
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