End of Life Care


Despite Major Efforts, Suffering at Life’s End Getting Worse, Not Better

(Getty Images)

(Getty Images)

By Jenny Gold, Kaiser Health News

It’s been more than 15 years since the Institute of Medicine released its seminal 1997 report detailing the suffering many Americans experience at the end of life and offering sweeping recommendations on how to improve care.

Throwing more medical care at patients who are “on their way to dying.”    

So has dying in America gotten any less painful?

Despite efforts to build hospice and palliative care programs across the country, the answer seems to be a resounding no. The number of Americans experiencing pain in the last year of life actually increased by nearly 12 percent between 1998 and 2010, according to a study released Monday in the Annals of Internal Medicine. In addition, depression in the last year of life increased by more than 26 percent.

That’s the case even though guidelines and quality measures for end-of-life care were developed, the number of palliative care programs rose and hospice use doubled between 2000 and 2009. Continue reading

Rural Doctor Launches Start-Up to Ease Pain of Dying Patients

Palliative medicine physician Michael Fratkin gets off a plane after visiting a patient on the Hoopa Valley Native American reservation. He wants to launch a start-up to support this kind of work. (April Dembosky/KQED)

Palliative medicine physician Michael Fratkin gets off a plane after visiting a patient on the Hoopa Valley Native American reservation. He wants to launch a start-up to support this kind of work. (April Dembosky/KQED)

This isn’t Michael Fratkin’s typical commute.

“It’s an old plane. Her name’s ‘Thumper,’” says pilot Mark Harris, as he revs the engine of the tiny 1957 Cessna 182. “Clear prop!”

“After the bad news, but before death, there’s a lot to be done.”    

It’s a 30 minute flight from our starting point in Eureka to the Hoopa Valley Native American reservation where Dr. Fratkin’s going to visit a man named Paul James. He’s dying of liver cancer.

“A good number of patients in my practice are cared for in communities that have no access to hospice services,” Fratkin says, shouting over the voices on the plane’s intercom.

Fratkin is a palliative medicine physician. He’s the guy who comes in when the cancer doctors first deliver a serious diagnosis. Continue reading

Coordinated Care for Those Nearing Life’s End — But Does It Save Money?

Sutter nurse Aileen Capuyan listens to Bob Martinez’s lungs. (April Dembosky/KQED)

Sutter nurse Aileen Capuyan listens to Bob Martinez’s lungs. (April Dembosky/KQED)

Bob Martinez has been in the hospital so many times, the surgical staff treats him like a regular at a coffee shop.

“They all know me!” he says. “If I go in there today, they’d say, ‘How’re ya doing Mr. Martinez?’ ”

‘I’m so sick and tired of being in hospitals. I don’t want to go back no more. I said, God, no more.’

Martinez is 81, a long-retired life insurance salesman. In the last few years, he’s had more than a dozen surgeries on his right leg, including a foot amputation, a casualty of severe diabetes. His heart disease has warranted almost half a dozen heart procedures. After one of his recent operations, he said he’d had enough.

“I’m so sick and tired of being in hospitals,” he says shaking his head. “I don’t want to go back no more. I said, God, no more. No more.”

That’s when hospital staff told him about a program through Sutter Health that would send people to take care of him at home. It’s called the Advanced Illness Management program, or AIM. It’s designed for people like Martinez who have multiple chronic illnesses. Continue reading

Doctors Say They Would Forego Aggressive Treatment When Near Death

(Getty Images)

(Getty Images)

By Katherine Hobson, NPR

Everybody dies.

But when doctors’ time is up, they are different from the rest of us. They “go gently” rather than opt for aggressive end-of-life treatments, as one physician wrote a few years ago. They have seen the suffering of their patients at the end of life and want no part of it.

In fact, nearly 9 in 10 young physicians just finishing up their residencies or fellowships wouldn’t want to receive life-prolonging CPR or cardiac life support if they were terminally ill and their heart or breathing stopped, a Stanford University School of Medicine survey finds.

The report, published Wednesday in the journal PLOS ONE, notes the disconnect between the aggressive care the average person receives — an average of about $7,000 worth for Medicare beneficiaries in their last month of life — and what doctors would want for themselves. Continue reading

California ‘Death with Dignity’ Advocates Launch New Campaign

Jennifer Glass of San Mateo, undergoing chemotherapy last year for lung cancer. (Courtesy: Mary Thomas)

Jennifer Glass of San Mateo, undergoing chemotherapy last year for lung cancer. (Courtesy: Mary Thomas)

A new campaign is underway to legalize physician-assisted suicide in California. Advocates launched a series of online ads last week to begin raising awareness. Still, it could take years for the effort to yield any results.

“Having choice helps me feel I have some control.” 

Since the early 1990s, lawmakers and activists have tried and failed several times to pass a death with dignity law in California. Under such a law doctors could prescribe lethal medications to patients who are terminally ill. Oregon and Washington permit the practice.

“California is a large state. It’s a politically complicated state,” says Barbara Coombs Lee, president of Compassion and Choices. Her advocacy group is leading the effort to try again to pass a law through the legislature or ballot proposition that would make aid in dying accessible in California. Continue reading

Death Cafe: Talking About Death — While Eating Cake

A recent Death Cafe, held at San Francisco's Zen Hospice Project. (Jeremy Raff/KQED)

A recent Death Cafe, held at San Francisco’s Zen Hospice Project. (Jeremy Raff/KQED)

By Jeremy Raff

In a dimly lit room decorated with several Buddhas and a large red-and-white Zen illustration, twenty-nine people sat in a circle. Some were eating chocolate bundt cake. It was an unusual setting to be discussing the topic at hand: death and dying. These death cafes have sprung up around the world to address the taboo subject head-on. Organizers hope that increased awareness of death will help people make the most of their lives.

Roy Remer, the group’s facilitator, hushed the room and passed around pieces of cardstock covered in Post-its. Each person wrote intimate words on them — family members’ names, roles they play (mother, mentor), significant relationships and important objects. The Post-its became a boiled-down map of what each person holds dearest. Then, Remer walked the circle, visiting each person with inevitable gravity. He then ripped away Post-its from each one.

Some reflexively clutched their children’s names. But most averted their eyes, looking stunned. It wasn’t easy for Remer either. “It felt violent,” he said. The exercise simulated loss and started the conversation about death and dying. Continue reading

How Mom’s Death Changed My Thinking About End-of-Life Care

By Charles Ornstein, ProPublica

Charles Ornstein with his mother Harriet Ornstein on his wedding day. (Randall Stewart, photo courtesy of Charles Ornstein)

Charles Ornstein with his mother Harriet Ornstein on his wedding day. (Randall Stewart, photo courtesy of Charles Ornstein)

My father, sister and I sat in the near-empty Chinese restaurant, picking at our plates, unable to avoid the question that we’d gathered to discuss: When was it time to let Mom die?

It had been a grueling day at the hospital, watching — praying — for any sign that my mother would emerge from her coma. Three days earlier she’d been admitted for nausea; she had a nasty cough and was having trouble keeping food down. But while a nurse tried to insert a nasogastric tube, her heart stopped. She required CPR for nine minutes. Even before I flew into town, a ventilator was breathing for her, and intravenous medication was keeping her blood pressure steady. Hour after hour, my father, my sister and I tried talking to her, playing her favorite songs, encouraging her to squeeze our hands or open her eyes.

She had told my dad that she didn’t want to be artificially kept alive if she had no real chance of a meaningful recovery. But what was a real chance? What was a meaningful recovery?
Doctors couldn’t tell us exactly what had gone wrong, but the prognosis was grim, and they suggested that we consider removing her from the breathing machine. And so, that January evening, we drove to a nearby restaurant in suburban Detroit for an inevitable family meeting.

My father and sister looked to me for my thoughts. In our family, after all, I’m the go-to guy for all things medical. I’ve been a health-care reporter for 15 years: at the Dallas Morning News, the Los Angeles Times and now ProPublica. And since I have a relatively good grasp on America’s complex health-care system, I was the one to help my parents sign up for their Medicare drug plans, research new diagnoses and question doctors about their recommended treatments. Continue reading

At Life’s End, Aggressive Care Still the Norm

By Alvin Tran, Kaiser Health News

(Photo/Kaiser Health News)

(Photo/Kaiser Health News)

While fewer older Americans are dying in hospitals, new research suggests that doesn’t mean they’re getting less aggressive care in their final days.

Even as deaths in acute hospitals declined between 2000 and 2009, the use of intensive care units in the final 30 days of life increased, as did short-term hospice use, according to a study of Medicare beneficiaries published Tuesday in the Journal of the American Medical Association. The rate of changes to care for these patients, such as transitions within the last three days of life, also increased.

Dr. Joan Teno at Brown University’s medical school led the study. She says the increased use of hospice is encouraging, but worries about when seniors are referred to hospice.

“While there is greater access to hospice services, there’s also more ICU, more repeat hospitalizations, and more late transitions in the last three days of life,” Teno said during an interview. “The good news is that we are referring to hospice. The bad news is we’re referring to hospice in the last hours of life.” Continue reading

Engage With Grace This Thanksgiving Weekend

Editor’s note: State of Health is participating in the Engage with Grace blogrally. Engage with Grace aims to get people talking about their wishes for end of life and advanced care. The Health Care Blog has put up the HTML code, if you want to host this on your own blog.

By Alexandra Drane

One of our favorite things we ever heard Steve Jobs say is: “If you live each day as if it was your last, someday you’ll most certainly be right.” We love it for three reasons: 1) It reminds all of us that living with intention is one of the most important things we can do. 2) It reminds all of us that one day will be our last. 3) It’s a great example of how Steve Jobs just made most things (even things about death – even things he was quoting) sound better.

Most of us do pretty well with the living with intention part – but the dying thing? Not so much. And maybe that doesn’t bother us so much as individuals because heck, we’re not going to die anyway!! That’s one of those things that happens to other people.

Then one day it does happen — to someone else. But it’s someone that we love. And everything about our perspective on end of life changes.

Know what you want at the end of your life; know the preferences of your loved ones. Print out this one slide.

If you haven’t personally had the experience of seeing or helping a loved one navigate the incredible complexities of terminal illness, then just ask someone who has. Chances are nearly three out of four of those stories will be bad ones — involving actions and decisions that were at odds with that person’s values. And the worst part about it? Most of this mess is unintentional — no one is deliberately trying to make anyone else suffer. It’s just that few of us are taking the time to figure out our own preferences for what we’d like when our time is near, making sure those preferences are known, and appointing someone to advocate on our behalf. Continue reading

Sick and Aging Prison Inmates; Current Care, Possible Changes

Inmate Sean Reese, a Vacaville prison hospice volunteer, helps a patient in the documentary "Life in Prison" by Lonny Shavelson.

The state Assembly is expected to vote by this Friday on a bill that would permit medical probation for county jail inmates. Under medical probation, inmates who are terminally ill or so physically incapacitated that they require 24-hour care would be released from jail.

A 2010 law already permits medical probation for prison inmates. If passed, this new law would extend medical probation to inmates at county jails. As the Bay Citizen reports:

The bill comes as the state’s new policy known as realignment brings tens of thousands of low-level felons who would have served time in state prison to county jails, burdening the county with costs of caring for very sick inmates.

Many of the prisoners who receive medical parole are bedridden, and officials say they pose no threat to others.

Since the (2010) law went into effect, according to Joyce Hayhoe, legislative director for California Correctional Health Care Services, 42 inmates have been approved for medical parole and seven have been denied of a total of 49 who have had hearings.

Journalist Lonny Shavelson gained rare access to the Vacaville prison hospice — the first prison hospice in the country — and produced this short, powerful documentary for the Center for Investigative Reporting.