The first article in a five-part series.
SALT LAKE CITY — When Richard Sloan first showed signs of confusion, his wife Jolean and their nine adult kids tried to think of excuses that didn't involve the word Alzheimer's. When it became undeniable, their focus shifted to bolstering each other on his final journey. Not once did Jolean consider sending him away.
But one of Alzheimer's challenges — it's a condition fraught with them — is figuring out the whats once communication is gone: What hurts? What's he saying? What does he want? What can I do to make him more comfortable? Richard's communication skills went first, and his grandson, Chandler, now 7, wondered what he'd done to make Grandpa stop talking to him.
Richard died peacefully last weekend. Until that moment, his wife of 53 years was his voice.
Most people will have a period of time when they are unable to make their own decisions about health care. They'll need someone else to do it. First, they need to figure out what they want and pick an agent, then tell that person and others who are near and dear.
"I believe people should have control over their own life, including decisions made at the end of their life," says Sen. Pat Jones, D-Salt Lake City, whose joint resolution encouraging all Utahns to fill out documents containing their end-of-life decisions will be signed by the governor Friday. "It's not just the aging. There are all kinds of stories of people who were younger and had a catastrophic accident or illness. They weren't prepared, and it was left up to family members who try to project what the wishes of the person would be."
This week, the Deseret News and KSL TV are exploring what happens in times of grave illness, with a focus on making decisions about what you want and informing care providers and loved ones. That is a gift for the person making the decisions and others during a stressful time, experts agree.
Susan Roberts, a chaplain at University Hospital, believes death is a sacred time, as important as birth. "We need to embrace it more and talk about it more. Just as much as we are making plans for babies coming into this world, why don't we make plans for people to leave the world?"
Funeral home director Kurt Soffe has had intimate discussions with thousands of families coping with death. Death is easier to accept if we have planned for it, he says.
But patients rarely arrive at the hospital with a prepared document that tells health care workers what kind of care they want or who can speak in their stead, says Dr. Bruce Chamberlain, former medical director of palliative care at University of Utah Hospital. Patients coming in from a facility, like a nursing home, are more apt to have such a document, called an advance health care directive. (Click here to download advance directive forms.)
When doctors ask if a directive has been prepared, "the response is remarkably variable," Chamberlain says. "A lot depends on who they've been talking to about their illness."
Nuts and bolts
An advance directive is a document or witnessed oral statement that names a surrogate to make health care decisions for an adult who cannot do it, says what kind of care is desired under particular circumstances or both. Another form, called a POLST — Physician Order for Life-Sustaining Treatment — is completed with a physician or care team. It's a standing medical order for what should or should not be done and a physician who bases care on the POLST is protected from liability.
Advance planning is not just for terminal situations. Sometimes, a person will survive the condition that for a time, at least, left them unable to discuss and express wishes. That means living with whatever was done.
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.
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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