End-of-Life Choice, Palliative Care and Counseling

Posts Taggeddeath

Deadline Looming

You’ve avoided it so far. You dread the paperwork but you can’t put it off any longer. The day has arrived: It’s time to talk about death.

The fourth annual National Healthcare Decisions Day (NHDD) is tomorrow, Saturday, April 16th. And planning for the end just got a little more fun.To mark NHDD, we’ve put together a tool to help lighten the conversation and initiate new ones: the Healthcare Decisions Game. The Game poses medical decision-making scenarios.It lets you compare your choices with how others guess you would answer.Your score will tell you how well – or not – your family, healthcare proxy or doctor knows what you would want if you could not speak for yourself. And who knows? You may find out the person designated to make decisions for you really isn’t the right person after all. Or if your doctor indicates she could not follow your wishes, maybe it’s time to find a doctor who could.

Think about the people you love. That’s what this is about. Will you act tomorrow to spare your loved ones the agony of guessing what you would want and fearing they might guess wrong? Someday they may have to tell a doctor what you would want as the end of life approaches. Make sure they know.

NHDD is a wonderful opportunity – and the Game a great tool – to encourage friends and loved ones of any age, in any state of health, to communicate what they would want.

Tomorrow, Saturday, April 16th, have a little fun talking about death. Look at it this way: it’s not taxes.

Doctors and family members often push for futile, aggressive care

by Erin Marcus, MD
via KevinMD.com

Every once in a while, there’s a magazine piece that so encapsulates the key moral issues — and irrationality — of 21st Century medicine that it warrants designation as mandatory reading for anyone who interacts with patients. Atul Gawande has written some of these; so too has Slate medical columnist, Darshak Sangavi.

The latest entry on the required reading list is Katy Butler’s “My Father’s Broken Heart,” which appeared in The New York Times Magazine on June 20th. Butler, who teaches memoir writing in California, describes the seven-year deterioration of her father Jeffrey, a retired college professor. Jeffrey Butler was active and intellectually engaged well into his 70′s. At 79, he suffered a stroke that left him with significant problems speaking, walking and putting on his clothes. Despite his initial determination to overcome the stroke’s aftereffects, he deteriorated, telling his wife, “I don’t know who I am anymore.”

A year after the stroke, Jeffrey Butler developed a painful intestinal hernia that needed to be repaired. As is routine for complicated elderly patients, the surgeon requested a preoperative cardiology clearance. The cardiologist, in turn, refused to deem him stable for surgery unless he received a pacemaker for his slow heart rhythm (which Butler doesn’t describe in detail). This wasn’t the first time the specialist had advised him to get a pacemaker; a year earlier, just prior to the stroke, it had also been recommended, and Jeffrey Butler had refused. But this time, his wife and healthcare proxy, Valerie — who was overwhelmed, fatigued and, most likely, reluctant to impede an urgent procedure that would fix her husband’s pain, consented. The couple’s primary doctor, who knew them well and who had told them a year earlier that he considered a pacemaker “overtreatment,” found out about the decision after the fact, by fax.

The pacemaker insertion and subsequent hernia repair, were, in the short-term, seemingly successful. Otherwise, though, Jeffrey Butler continued to worsen, suffering additional strokes and becoming blind, incontinent, and senile, and developing the personality changes often seen with dementia. Katy Butler painstakingly describes the devastating effect of all this on her mother, who described her life as “in ruins.” Four years after the pacemaker placement, she asked his cardiologist to turn off the device, but he refused, describing it, according to Katy Butler, as something akin to murder. And so, the family’s hellacious existence continued, until Jeffrey Butler died uncomfortably of pneumonia in the hospice wing of a local hospital, eight years after his initial stroke. The cause of his expiration was respiratory failure; his pacemaker continued to work perfectly.

Valerie Butler died a year later, after resolutely refusing open-heart surgery for two leaky valves. At the beginning of the story, she was a vigorous woman who practiced yoga and calligraphy. By the end, she was mentally sharp but physically frail, and had lost her confidence in doctors as healers looking out for their patients’ best interests, instead viewing them, in the words of Katy Butler, as “skilled technicians with their own agendas.”

As a cog in the US medical machine, it’s not difficult for me to envision how all this happened. Taken individually, the initial decisions in Jeffrey Butler’s care don’t seem particularly unreasonable. While Butler doesn’t provide all the details, a painful intestinal hernia is something that needs surgical repair, and, if the bowel becomes trapped and deprived of oxygen, life-threatening. It’s totally understandable that the surgeon would want an elderly patient with known vascular disease to be cleared by a cardiologist before undergoing anesthesia, which can directly affect the heart and blood vessels. Implanting a permanent pacemaker is more debatable, but not totally out of line; even though Jeffrey Butler was significantly impaired after his first stroke, he was still, at that point, able to communicate, walk alone, and participate in water aerobics. It’s therefore not difficult to comprehend the rationale of the consulting cardiologist — who most likely wasn’t familiar with the family’s private pain — in recommending the device.

Unlike many people in this situation, the Butlers were lucky to have a thoughtful primary care doctor, with whom they shared a close personal bond. But as is true too often, the subspecialists left him out of the discussion. Even if they had included him, Katy Butler points out, he would have been “effectively penalized” financially for taking the time to have a lengthy discussion with her parents and coordinate a plan with the surgeon and heart specialist. (Butler also notes that the original health reform bill in the US House did include reasonable payment for such discussions, which were depicted as “death panels” by the bill’s opponents — thank you, Sarah Palin).

Butler points the finger for our fix-it-fast, think-about-the-big-picture-later medical system at the medical-device and specialty lobbies in Washington and the distorted payment system their efforts have spawned, in which doctors get rewarded to do procedures instead of taking the time to communicate effectively with their patients. Despite the reimbursement system’s role in creating this irrational monster, our country’s technology-happy mentality is also to blame. Intertwined with all this is the discomfort many of us have with the end of life, in which death is viewed as a failure. While medical schools have added curricula on this topic, it’s not exactly the focus of their overall educational program.

Doctors aren’t the only ones uncomfortable with death. It’s not uncommon for family members of critically ill patients to push for futile, aggressive care, even if the medical team feels the treatment is simply prolonging the patient’s demise. One friend of mine quit critical care medicine after being forced by family members to keep their relative with end-stage Alzheimer’s on a ventilator. “That’s not why I went into medicine,” she said.

Recently, I faced a situation similar to that of Jeffrey Butler’s doctors. My residents admitted a patient with dementia who briefly passed out and was found to have an intermittent heart block. As is common with many of our patients, he had no primary care physician. Of course, our team called the heart rhythm specialists right away, and they concluded that he was, indeed, a candidate for a pacemaker. But when they called the patient’s brother to get consent, he refused. At the time, I didn’t think much of it; we documented the refusal in the chart, adjusted the patient’s medications, and sent him back to his assisted living facility with a follow-up appointment. After reading Butler’s article, I can’t think of a better solution.

Erin Marcus is an internal medicine physician and writes at New America Media. This article originally appeared in The Huffington Post.

Death of Ruth Proskauer Smith Honors the Life She Led

Ruth Proskauer Smith, a friend and an activist for individual autonomy, died last night, closing her life in the manner she had wished for, planned for and devoted her life to securing as her right.

When I met Ruth in 1996, she was already an icon in the movement for freedom of choice at the end-of-life. She had a long list of accomplishments behind her. But she was not happy. At that time, only Oregon had succeeded in affirmatively legalizing aid in dying, and its Death With Dignity law languished in legal limbo. Ruth was determined to make a difference and joined the work of Compassion & Choices, serving as a dedicated ambassador of end-of-life choice.

Among the things I treasure from my 15-year friendship with Ruth is having had the opportunity to see her growing pleasure with advances we’ve achieved in end-of-life choice. Together Ruth and I witnessed the triumph of justice over repeated legal challenges to Oregon’s law, the passage and implementation of Death With Dignity in Washington, the passage in California of the Terminally Ill Patients’ Right to Know End-of-Life Options Act and a ruling by the Montana Supreme Court to recognize and affirm physician aid in dying.

Ruth was a generous, fierce and dedicated supporter of our movement, as she was for reproductive choice. Her passion for human liberty was not limited to one issue, but spanned from the cradle to the grave. Gloria Steinem summed that up beautifully in a letter she wrote when Compassion & Choices honored Ruth on her 100th birthday.

When I was in South Africa a few years ago, I went to see a wise woman known as the Queen of the Lovedu, a tribal group of about 300,000 that had settled in a remote rural area after a long migratory past.

She was one of the most respected tribal leaders in the country, partly because she, unlike many, had not been put in place by the apartheid government or even by heredity. She was one of a long line of wise leaders who had been chosen communally as a young woman, and then trained for many years by her predecessor until she, too, was ready to become a source of guidance and continuity.

When I came to the remote area and her village, I noticed that all the earthen, thatched-roof structures were as round and smooth as sculptures. So were the central area and the places where livestock were kept.

I entered into a smaller round structure at a little distance from the rest, and was welcomed by a calm woman who seemed to be in her late fifties. She was seated in a large armchair facing me and the two translators who brought us together across three languages.

I learned that she had two paramount duties: keeping the peace and making rain. She was about to begin instructing the young woman who would eventually succeed her-a long course of learning stories that contained their history and customs, ways of governance and healing.

In response to my questions, she said she had heard there was violence against women in other places, but she had not personally witnessed it here. Traditionally, women had understood how to control their own fertility with herbs and abortifacients-how to have children well spaced and no more than they wished-but this knowledge was called sinful by some Europeans and by the church.

Among other rights of the past had been the right to decide when to die. For example, after her duty of transferring her knowledge to the next wise woman was complete, it was up to her to decide when she was ready to leave this life.

At least it had been-until scandalized missionaries punished and put an end to the practice. Only a male god could decide life and death.

I finally realized the obvious: those who take away the power to decide birth also take away the power to decide death. The first one is unique to women; the second is the right of us all. In our country, is it not odd that those who support capital punishment also tend to oppose abortion and birth control. The question is not life or death but who has power over life and death.

Ruth, you knew this long ago-and you set out to empower us all. Your work also restores balance between women and men, between people and nature.

I thank you for being the wise woman of Manhattan.

- Gloria Steinem
from Compassion & Choices Magazine, Spring 2008

Ruth manifested deeply held personal beliefs throughout her life, and she wanted her death to be the same. She gave her family a detailed, written plan of her wishes should she become incapacitated, including guidance on whether and when to call an ambulance and the disposition of her body after death. She discussed her plan with her family and doctors, obtaining their assurance that her wishes were known, and that they would be honored. Her proactive approach gave her children the security of knowing, without question, what was right for Ruth when the time came.

Last night, Ruth died peacefully, as and when she had hoped. Family members at her side remained in touch with a Compassion & Choices counselor throughout Ruth’s dying process. Ruth spent the last chapter of life in her home, in the company of her children, her grandchildren and her great grandchildren.

Ruth’s careful plans and clear communication made it possible to experience a death that honored the life she led. Her courage, advocacy and unfailing support for human liberty will enable millions who follow her to achieve the life, and the death, they choose.

The *D* Word

In most published remembrances, loved ones dance around death — but does that really help anyone?
By Carlos Alcalá
The Sacramento Bee

Death is hard to find in death notices.

This is the time of year – January and February – when death rates are generally highest, according to the National Vital Statistics System.
The Bee and other newspapers tend to run more paid death notices at this time of year, too.

If you read those notices carefully, however, you’ll find many people in them didn’t exactly die.

Most of them “passed away.”

Some “entered into rest.” Others “left the world in God’s hands.”

In a few cases, there isn’t even a verb, only a date and location to indicate the death.

“Death is hard to deal with,” said University of California, Berkeley, linguist Geoffrey Nunberg, explaining why people avoid the four-letter word that starts with ‘d’ – died.

“This is one reality that’s hard to face head-on,” he said. “It happens in the Bible; it happened in Homer.”

Take Genesis: “Abraham gave up the ghost … and was gathered unto his people.”

It happens in the newspaper, too. A lot.

Bill Gaylord is a regular reader of The Bee’s “Remembrances.” That’s because of his age, which he described as “beyond four score.”

Gaylord joked, as George Burns once did, that he scans the notices and, if he isn’t in there, he shaves.

That’s how he noticed the variety of phrases.

“Over the years, I have realized that a fair number of people composing death notices for their loved ones avoid the simple statements of fact,” he said.

He started collecting phrases in The Bee’s paid death notices. They are submitted by survivors or funeral homes, as opposed to news obituaries, which are written by reporters.

In a few short months, Gaylord came up with more than 150 different ways to say a loved one died, fewer than 10 of which used the word “died.”

Among his more elaborate finds:

“At peace and sailing into the sunset.”

“Arrived on his last flight – as he called this final journey.”

“Left us to become an angel in heaven.”

“Slipped away quietly.”

And … “Went on to be with her well-known master, Jesus, where her husband of 57 years was waiting for her arrival. As he took her by the hand and led her up those golden stairs and through those pearly gates he might have said, ‘What took you so long?’ ”

The newspaper representatives who take the ads say they generally use “passed away.” The fancier phrases come from family members, not funeral homes.

When Alvin Joseph Broussard died from cancer in May, his family chose to say he “moved further north to live with his Heavenly father.”

“We believe he is alive and well, just different,” said his son, Joel Broussard.
By “north,” they meant heaven, he said.

Broussard’s family also said he was “fully restored.”

They believe, Joel Broussard said, that death restores the person to his perfect self, not the body that had been damaged by time or disease.

This is not an approach taught in the funeral services program at American River College, according to coordinator Jeffrey W. Stephenson.
“People really need to hear the words ‘dead’ and ‘death,’ ” he said, explaining that it’s a needed part of the mourning process.

Students in classes on the psychology of death and dying hear that, and it’s also conveyed in Funeral Directing 1, during which instructors discuss death notices, Stephenson said.

He prefers to use “died” when preparing an obituary but will change it at the family’s request.

Bea Toney Bailey also prefers a more direct approach to death, which she discusses on “Bea on Bereavement,” her local cable show sponsored by the Interfaith Service Bureau, at 9 p.m. Mondays on Comcast and SureWest.

“We’re a very young culture, and we’re very youth-oriented,” Bailey said.

Death makes us uncomfortable. “If we talk about death,” she said, “we might die.”

So people hedge.

“They say anything except, ‘Hey, they died.’ ”

Beyond death notices, people have developed a lot of slang for death – “kicked the bucket,” “popped their clogs,” “bit the dust.”

It isn’t just death, though. Other unpleasant and pleasant bodily functions – sex, aging, vomiting, defecation – also generate lots of euphemisms, Nunberg said.

Though she is a Christian, the daughter of a minister, Bailey doesn’t think those circumlocutions – roundabout ways of avoiding the point – are helpful to those who are grieving.

It means they are avoiding the reality, she said, but it also doesn’t help anyone to say, “Snap out of it! He’s gone!”

That only serves to alleviate the discomfort of the person who says it, not the mourner, Bailey said.

She also thinks people should prepare their obituaries ahead of time – as a favor to their families.

“Mine’s already done,” she said.

Although she says she favors the direct approach, what she’s written is not blunt.

It opens with no equivocation: “If you’re reading this document, it means I’m no longer with you.”

It continues, however, with one of those indirect phrases: “I’ve gone on to be with the Lord.”

Avoiding the ‘D’ word

People use many phrases to express death in death notices. Here are a few more examples collected by Bill Gaylord:
• Absent from the body – present with the Lord
• He was called home.

• As God swept His hand across the earth, He took his angel home.

• Fell asleep in the Lord
• Crossed over

• His spirit soars off to a new adventure.

• Joined his wife

• Left us suddenly

• Passed over to his reward

• Returned home

• Went to sleep peacefully

• Budded on earth, blossomed in heaven

• Taken away from us

Those looking for more information on death, dying and bereavement may want to look at Bea Bailey’s Web site, farewellmyfriend.net.

Elizabeth Kubler-Ross’ 1969 book “On Death and Dying” is still considered a classic in the field, and most bookstores will have a section of titles on mortality issues.

The Way We Die Now

Timothy Egan
The New York Times

PORTLAND, Ore. —– In the last days of her life, Annabel Kitzhaber had a decision to make: she could be the tissue-skinned woman in the hospital with the tubes and the needles, the meds and smells and the squawk of television. Or she could go home and finish the love story with the man she’d been married to for 65 years.

Her husband was a soldier who had fought through Europe with Patton’s army. And as he aged, his son would call him on D-Day and thank him – for saving the world from the Nazis, for bequeathing his generation with a relatively easy time.

That son, John Kitzhaber, knew exactly what his mother’s decision meant. He was not only a governor, a Democrat who served two terms in Oregon as it tried to show the world that a state could give health care to most of its citizens, but a doctor himself.

At age 88, with a weak heart, and tests that showed she most likely had cancer, Annabel chose to go home, walking away from the medical-industrial complex.

“The whole focus had been centered on her illness and her aging,” said Kitzhaber. “But both she and my father let go that part of their lives that they could not control and instead began to focus on what they could control: the joys and blessings of their marriage.”

She died at home, four months after the decision, surrounded by those she loved. Her husband died eight months later.

The story of Annabel and Albert Kitzhaber is no more remarkable than a grove of ancient maple trees blushing gold in the early autumn, a moment in a life cycle. But for reasons both cynical and clinical, the American political debate on health care treats end-of-life care like a contagion — an unspeakable one at that.

Nobody was more frustrated than John Kitzhaber as the health care debate got hijacked over the summer by shouters and misinformation specialists. And no politician is more battle-scarred on this issue. He looks, at 62, still the Western man, with his jeans, his shag of gray hair, the face weathered by days spent trying to lure steelhead to the surface in the Rogue River. It has been his life work to see if at least one part of the country could join the family of nations that offers universal coverage.

With his mother’s death in 2005, Kitzhaber lived the absurdities of the present system. Medicare would pay hundreds of thousands of dollars for endless hospital procedures and tests but would not pay $18 an hour for a non-hospice care giver to come into Annabel’s home and help her through her final days.

“The fundamental problem is that one percent of the population accounts for 35 percent of health care spending,” he said. “So the big question is not how we pay for health care, but what are we buying.”

He is not, he says, in favor of pulling the plug on granny. The culture of life should be paramount, he says, following the oath he took as a doctor. But Oregon, years ahead of the rest of the country, has talked and talked and talked about this taboo topic, and they’ve voted on it as well, in several forms. They found — in line with national studies — that most people want to die at home.

In addition, Oregon was the first state to allow terminally ill patients to take medications to end their lives. The fear was, Oregon would become a death magnet, drawing suicide tourists and put itself on a slope to euthanasia. But it has not worked out that way. Since the change in the law in 1997, only about 33 people a year with terminal illnesses have ended their lives by their own hand with a doctor’s prescription.

In last year’s presidential campaign, Kitzhaber tried to make health care the top domestic issue. After the campaign, he was on the short list to become President Obama’s secretary of health and Human Services. Now he’s running, next year, for a third term for governor.

He was appalled when Sarah Palin and Senator Charles Grassley of Iowa started stoking fears of nonexistent death panels. At last, public officials were talking about death — but only to scare the elderly and win political points.

More sensible voices have since joined the debate, asking how we reform a system that lavishes most of its benefits on a cure for the “disease” of aging. President Obama has talked about squeezing billions of waste, fraud and abuse from Medicare. But he has yet to admit the obvious: those savings can only come from changing the way the system treats dying people.

About $67 billion — nearly a third of the money spent by Medicare — goes to patients in the last two years of life. The need to spend less money at the end of life “is the elephant in the room,” Evan Thomas wrote in “The Case for Killing Granny,” the cover story in last week’s Newsweek. “Everyone sees it but no one wants to talk about it.”

John Kitzhaber, M.D., politician, and son who watched both parents die in a dignified way, cannot stop talking about it. His parents’ generation won the war, built the interstate highway system, cured polio, eradicated smallpox and created the two greatest social programs of the 20th century — Social Security and Medicare.

Now the baton has been passed to the Baby Boomers. But the hour is late, Kitzhaber says, with no answer to a pressing generational question: “What is our legacy?”