Cost of Dying: planning for a good death, from advance directive to talking with your family

The Cost of Dying series: Choosing How You Die

By Lisa M. Krieger
Mercury News

Bill Newman, 87, of Capitola, wears a self-made "Do Not Resuscitate" badge when he goes out. Experts say that to assure that such wishes are met, persons should obtain an official DNR form and medallion or bracelet. (Dai Sugano/Staff)

Bill Newman has seen his share of hospitals. That’s why he plans to never go back.

“If I fall over, just let me go. No 911 guys with paddles. No bells and whistles,” said the 87-year-old retired high school teacher and double bypass survivor.

So he wears a “Do Not Resuscitate” badge to his 6:15 a.m. gym workouts in Capitola. He posted the same DNR message on his refrigerator and shared it with his doctor — and all 10 children.

Retired high school teacher and double bypass survivor Bill Newman, 87, calls end-of-life heroics a waste of scarce resources. (Dai Sugano/Staff)

A good death is not guaranteed, he knows. It takes preparation, discussion and documentation. How others make — and how you should make — the deeply personal and difficult decisions about how you choose to die is the subject of this installment in our reporting on the emotional and financial Cost of Dying.

Modern medicine prolongs our lives in ways once thought unimaginable. But increasingly, we dwindle into frailty, disease and dementia, ill-prepared for the day when treatment fails us. We can do better, if we make a conscious choice.

Newman took control of his final days. Lila Presley never shared her wishes, and her family still bears the scars of a dispute over her end-of-life care. Prominent end-of-life attorney Jon Eisenberg thought his own father’s wishes were clear, but he has been startled by the complexities of making such critical decisions for the man who gave him life.

No matter what you prefer — a quiet death far from an ICU or the most intensive care available — experts agree:

Make your choice known early in life through an advance directive, a document that allows you to convey preferences about end-of-life care and appoints someone to make treatment decisions for you if you cannot make them yourself. They caution, however, that even the best-written directives may not anticipate all possible scenarios.

Bill Newman holds his official "Do Not Resuscitate" form. After watching the slow decline of his mother and his wife, he says he is not afraid of a quick death from a heart attack. (Dai Sugano/Staff)

“Advance directives are essential. … But end-of-life decision-making isn’t easy, nor should it be,” Eisenberg said.

The essential question is: “What makes life worth living?” said Judy Citko of the Coalition for Compassionate Care, a state organization that advocates end-of-life planning.

Persimmon polish
Joy Kennard, 54, knew what she wanted and made sure others knew it too. She was determined to leave the world with her typical organizational flair.

“I don’t want to die with no raggedy nails,” she announced to girlfriend Colleen Hudgen in 1998 after a diagnosis of fatal Stage 4 lung cancer. So the pair climbed into Colleen’s Toyota Camry and drove to downtown Campbell for a manicure. The girlfriends also went shopping. At McWhorter’s Stationers, Kennard bought an advance directive form and a will kit. They sat together in Kennard’s Santa Clara apartment filling it out. When they discovered it needed another witness, they phoned a third girlfriend — who rushed over to make it official.

“She did not want to leave any loose ends,” recalled Hudgen, a San Jose resident. “She didn’t want her husband and friends to worry, or be caught in the middle. She put names on everything — her fur coat, scarves and jewelry. She took off her wedding ring (for safekeeping) and put on a rubber band, so ‘God will know I’m a happily married woman.’ She planned the funeral at her church. She was totally in control.”

Bill Newman keeps his homemade “DNR” badge pinned to his jacket, and it goes with him everywhere. “I’ve lived a good life,” he says, “and I figure I will do just fine in the next one.” (Dai Sugano/Staff)

On her final day — dressed in a pink negligee and bed jacket, with lipstick, persimmon nail polish and combed hair — Joy said goodbye to 30 friends and family, and then died. “We now have such precious memories,” Hudgen said.

Few make plans

Such end-of-life conversations can be tough, but the documentation is simple — through an advance directive, a DNR or a Physician Orders for Life Sustaining Treatment (POLST). The paperwork is free: No lawyers are needed for you to give priceless guidance to loved ones.
But a recent survey shows most of us haven’t planned for our demise.

Although 82 percent of Californians say it is important to have end-of-life wishes in writing, only 23 percent say they have done so, according to a February poll by the California Healthcare Foundation.
Fewer than half — 44 percent — said they had discussed their end-of-life wishes with the loved one they would want making decisions for them.

Malcolm Plant, of Berkeley, holds a letter written in 2003 by his late father, Graeme, asking that no heroic measures be taken if diagnosed with Alzheimer's Disease. After the letter was given to his family members, Graeme developed dementia and peacefully passed away in 2011. (Dai Sugano/Staff)

This bodes ill for a graying America. By 2030, almost one in five Americans will be 65 or older, up from about one in eight today. Every day, more than 7,500 baby boomers age into Medicare, and their parents swell the ranks of the once-rare over-85 “very elderly.”
But planning isn’t only for the sick, frail or elderly. “We recommend it when you turn 18,” Citko said.

Three highly publicized cases all involved young women. Karen Ann Quinlan was 21 when she went into a persistent vegetative state — for a decade — after a few gin and tonics and a Valium. Nancy Cruzan, 25, became unconscious for seven years after an auto accident until she died. Terri Schiavo’s heart stopped, briefly, when she was 26. But it took 15 years for her to die without regaining consciousness.

Like his father, Malcolm Plant (at right in the family photo) has taken steps to give doctors guidance about his end-of-life care. His father, Graeme, (at left in the family photo) wrote a personal letter in 2003, left, detailing instructions to his family not to provide heroic care if he developed dementia. Graeme developed dementia and peacefully passed away in 2011. Malcolm has completed a Durable Power of Attorney, right, which authorizes his wife to advocate on his behalf if seriously ill or injured. (Dai Sugano/Staff)

Because none of these young women had prepared an advance directive, no one knew their wishes for end-of-life care. So the whole nation debated whether they should be allowed to die.
For the very elderly or chronically ill, experts also recommend a second form, the POLST, which went into effect in California in 2009.

It is a legally binding, more authoritative assertion of your wishes.
Printed on bright pink paper and signed by a doctor, it alerts emergency medical personnel and others whether you want aggressive treatment, comfort care or nothing at all.

Others, like Newman, have a third form, the Do Not Resuscitate directive. It’s better than nothing, but the POLST has largely replaced it. Official DNR forms or bracelets tell medics not to restart your heart if you suffer cardiac arrest, but they don’t address issues like feeding tubes or ventilators.

Colleen Hudgen, of San Jose, acted as an advocate for her friend Joy Kennard. Kennard was diagnosed with fatal lung cancer in 1998 and immediately took charge of planning her final days. (Dai Sugano/Staff)

Taking advance planning to heart, one hospital system in Wisconsin has earned the reputation as one of the best places in America to die. Its end-of-life counseling program was a model for a provision in President Barack Obama’s landmark health care legislation. The White House abandoned it after opponents raised the specter of “death panels.”

At Gundersen Lutheran Hospital system in Lacrosse, nearly 90 percent of patients have made a plan, about four times more than Californians. Patients there spend 13.5 days in the hospital in the final two years of their lives compared with more than 30 days in most big-city hospitals.

Colleen Hudgen recalls how her friend Joy Kennard, seen in the photo frame, took charge of her fate once diagnosed with cancer. “She did not want to leave any loose ends,” Hudgen says. “She didn’t want her husband and friends to worry, or be caught in the middle. She put names on everything — her fur coat, scarves and jewelry. She took off her wedding ring (for safekeeping) and put on a rubber band, so ‘God will know I’m a happily married woman.’ She planned the funeral at her church. She was totally in control.” (Dai Sugano/Staff)

Family conflict
Peace of mind is the greatest value of prepared paperwork, said Eisenberg, of Oakland, who served as one of the lead attorneys in the Terri Schiavo case, representing the husband in his attempt to remove her life support. You “know that you can exercise control over the politicians, the doctors, the clergy and the medical industry.”

“It is not necessary to have a form that takes care of absolutely everything,” said UC San Francisco geriatrics expert Dr. Rebecca Sudore. “What’s important is the discussion and preparation that the form represents.”

The family of San Jose resident Lila Presley would have been comforted by an explicit understanding of how she wanted to end her days.
Presley was so devoted to her seven children that she wrote each one a letter — on lovely peacock-decorated stationery — expressing her love for them and listing what she was leaving them.
But she didn’t mention anything about her own care. “She never wanted to talk about death, and didn’t. We weren’t that great at communicating,” daughter Jeanette Schnell said.

So in 1992, when Presley, then 63, became sick after Thanksgiving dinner and went into emergency surgery at Stanford Hospital for a punctured gall bladder and sepsis and then onto life support, the question of stopping care deeply divided her stunned children.
More than two decades later, the family conflict during Presley’s 21 days in intensive care still haunts Schnell.

“There were seven of us kids to argue about treatment options,” she said. “Most of my siblings wanted to save her at all costs … even when her body created blood clots and both of her feet died.
“But my sister and I knew my mother would not have wanted to be wheelchair-bound with no feet. It was obvious she was suffering. The doctors finally kindly advised us to let her go.”

Schnell still has the itemized $225,000 hospital bill for those 21 days. It is just one example of why one-quarter of all Medicare spending annually is for the five percent of beneficiaries who die each year, according to the Agency for Healthcare Research and Quality.

Colleen Hudgen says when her friend Joy Kennard was diagnosed with cancer she first selected her husband, Charles, to be her advocate. But as she sickened, she realized he needed support and added best friend Hudgen. Charles made the official decisions, but Hudgen backed him up. “He was closer to her, and loved her the most, but she didn’t want to put any undue burdens on him,” Hudgen says. “She didn’t want him to live with any wrong decisions.” (Dai Sugano/Staff)

Too sick to speak
She’s resolved to do a far better job with her own family: Last month, during a family birthday celebration, Schnell simply said: “I have something that Dad and I want to talk about.” She then described their advance directives and funeral plans. At first, there was uncomfortable silence, then laughter. Now she feels “very liberated,” she said.

This is the best way to bring up the subject of dying, experts agree: Just start talking — in the car, at a restaurant, in the park, on the phone or wherever feels right. The National Institutes on Aging suggests using current events as a springboard, they say. Let movies and news stories open opportunities to discuss “if that happened to me, here’s what I’d do or want done for me.”

If you’re worried about aging parents, you can explain that having this conversation will help you care for them and do what they want.
Ease into the conversation, experts suggest, by saying something like, “when Uncle Walt had a stroke and died, I thought you seemed upset that his kids wanted to put him on a respirator.” Or, “I’ve always wondered why Grandpa didn’t die at home. Do you know?”

There are only two critical decisions:

Who will you name as your advocate when you are too sick to speak for yourself?

Have you spoken to that person about the things that are important to you and put them in writing?

Averting conflict
Your advocate does not have to be a spouse or child. In fact, they may be too emotionally attached to make the hard decisions you need. When Kennard was diagnosed with cancer, she selected her husband, Charles. But as she sickened, she realized he needed support and added best friend Hudgen.

Charles made the official decisions, but Hudgen backed him up. She was the one who talked to doctors. And when Kennard needed anything — a test result, collard greens or just someone to hug her in bed — Hudgen was there.

“He was closer to her, and loved her the most, but she didn’t want to put any undue burdens on him,” Hudgen said. “She didn’t want him to live with any wrong decisions. She was interested in him moving on.”
Hudgen has selected her own decision-maker — and it’s neither her husband nor two daughters. It’s her brother: a retired Army colonel.

“He’s someone who is strong, rational, reasonable and totally calm.”
You can also specify who you do not want involved, like “the black sheep on the white horse,” said Palo Alto elder law attorney Michael Gilfix.

Letter to loved ones

Your goals and values are big questions that deserve deep reflection.
Three generations of Malcolm Plant’s family have done such thinking — a family tradition that the Berkeley engineer cherishes.
In the ’60s, his grandmother wrote a letter to her family, saying

“Take no heroic measures to prolong my life when it is too far gone to be worthwhile.” It was prescient, years before her decline into Alzheimer’s.

In 2003, his father, Graeme Plant, penned a similar letter to his own family.

Advanced Alzheimer’s, he told them, had robbed his mother and sister of their rich minds and personalities.

“I do not want to put those I love through that, just so someone can claim they saved my body from dying,” he wrote.

Then, Alzheimer’s gripped him, too.

That letter was a precious guide last fall when, at 87, Graeme developed pneumonia.

Rather than rush him to a hospital ICU, “we elected to take him home, knowing that he would die peacefully there,” Malcolm Plant said.
“As my siblings, mother and I read and reread the letter, we were certain that we were doing the right thing,” he said.

“I remain extremely grateful for the gift he gave us,” said Plant, 58, who will use parts of his father’s letter in his own instructions for his family.

But that choice isn’t necessarily right for everyone. Becky Sangster’s 73-year-old mother-in-law was also diagnosed with pneumonia, but the family chose a different response: aggressive intervention.

“End-of-life” care may seem futile in hindsight, Sangster said. But if the patient recovers, like Sangster’s mother-in-law, it’s considered a life-affirming success.

Hospitalized for 45 days under heavy sedation and with a feeding tube, Sangster’s mother-in-law grew thinner and weaker every day.
Yet, “today she is back in her studio apartment, feeling better than she has in years and leading an independent life,” said Sangster, of Mountain View.

Anything better than nothing
But printed forms can’t predict the myriad clinical crises that often occur — so conversations are essential, said elder care attorney Doris Hawks, of Los Altos. And it’s important to give your advocate some flexibility in making decisions.

“You can fill out as many check boxes as possible, and sometimes it is still not enough,” agreed Sudore, the UCSF geriatric expert.
Even Eisenberg, an expert in end-of-life complexities, was startled when he had to decide the fate of his own father.

His father, who has Parkinson’s disease and progressive dementia, doesn’t want life support when his condition turns terminal. But when his father recently suffered an erratic heartbeat, Jon consented to emergency treatment. He wonders: “Did I contravene his directive? I don’t know! We never thought about atrial fibrillation!”

“He’s not terminal. It’s not life support. But now he’s doubly incontinent. … It’s a miserable existence. I don’t think I did him any favors,” he said.

“You just have to do the best you can — which is far better than doing nothing at all,” he said.

That’s why 87-year-old Newman is taking responsibility for his death. He doesn’t want a lingering exit. He considers end-of-life heroics a waste of scarce resources.

He keeps his homemade ”DNR” badge pinned to his jacket, and it goes with him everywhere.

“I’ve lived a good life,” he said, “and I figure I will do just fine in the next one.”

~ by Butch on April 8, 2012.

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