End of Life Care

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March 5, 2013 | 10:24 AM | By

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 →

FILED UNDER: Policy, End of Life Care
February 6, 2013 | 10:23 AM | By

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 →

FILED UNDER: Policy, End of Life Care, Hospice, ICU Care
November 23, 2012 | 2:31 PM | By

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 →

FILED UNDER: Policy, Advance Care Planning, Advance Directive, End of Life Care
August 28, 2012 | 2:32 PM | By

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.

FILED UNDER: Policy, End of Life Care, Prison Health Care
May 25, 2012 | 10:52 AM | By

No Death Panel Debate–Mass. Senate OKs “Palliative Care Awareness”

By Martha Bebinger, Kaiser Health News

(Ryan Wilcox: Flickr)

(Ryan Wilcox: Flickr)

It’s been almost three years since Sarah Palin claimed that end-of-life care options could turn into death panels.

But last week, with no discussion, legislators avoided a minefield that exploded repeatedly during the national health care debate. With a quick call of the ayes and nays, the Massachusetts Senate approved Amendment no. 121, “Palliative Care Awareness.” It requires that physicians and nurses in Massachusetts must talk to terminally ill patients about their end of life options, their risks and benefits and how best to manage their symptoms and pain.

Senate Republican leaders confirm that they have no objections … and it’s also supported by one of the state’s leading right-to-life groups.

In 2006, Massachusetts passed statewide health insurance reform which requires nearly every resident to carry health insurance. It’s considered a model to the feds’ Affordable Care Act.

Since then, Massachusetts has been implementing its plan. Counseling advocates say they won’t let Palin’s interpretation of end-of-life care derail their mission.

“The national controversy about death panels — what AARP called lies about death panels — is completely misguided,” said Dr. Lachlan Forrow, who directs ethics and palliative care programs at Beth Israel Deaconess Medical Center. “In Massachusetts we can unite and show how to do it right.” Continue reading →

FILED UNDER: Policy, End of Life Care, Massachusetts Health Care Reform
February 14, 2012 | 3:35 PM | By

Disparity Between Preferences and Actions in End-of-Life Care

(Rosie O'Beirne: Flickr)

(Rosie O'Beirne: Flickr)

It’s a paradox of American health care that has been present for years, and a new study reinforces it: the overwhelming majority of Californians say they want to die a natural death, at home, but less than one in four has actually put their wishes in writing. This lack of clarity can leave loved ones and doctors to try to sort out wishes, often during a time of crisis.

The statewide survey is from the Oakland-based California HealthCare Foundation. While so few have put their wishes in writing, the poll also found that 82 percent of Californians said it was important to do so. Another paradox.

“When we juxtapose that to what actually happens to people,” said Kate O’Malley, senior program officer at the Foundation, “We realize there is a lot of work to be done in helping people find a way to state their preferences and make sure that their family members and their providers know what their preferences are.” Continue reading →

FILED UNDER: Policy, You're the Boss, End of Life Care
November 1, 2011 | 10:13 PM | By

Steve Jobs “Think Different” Philosophy Included Approach to Cancer Treatment

Steve Jobs announces the availability of iTunes for PC computers in October, 2003. He was diagnosed with cancer the same month. (Justin Sullivan/Getty Images)

Steve Jobs announces the availability of iTunes for PC computers in October, 2003. He was diagnosed with cancer the same month. (Justin Sullivan/Getty Images)

This post originally appeared on KQED’s NewsFix on October 7, 2011

Since Steve Jobs’ resignation as Apple CEO in August, many of the basic facts of his disease have been widely written about. Jobs had a rare form of pancreatic cancer, Pancreatic Neuroendocrine Tumors. The Wall Street Journal and The Washington Post both feature solid pieces with additional detail about this disease.

The American Cancer Society’s five-year survival rates for the more frequently diagnosed type of Pancreatic Cancer are bleak.  But for those afflicted with the rare type of this cancer Jobs had, survival rates are much higher.

For a moving obituary, the American Cancer Society’s Dr. Len Lichtenfeld had a surprising approach. He writes about Steve Jobs as a survivor.

 …his greatness is amplified by what he accomplished under the most difficult of circumstances. For here was a man who had an uncommon cancer that recurred and required a liver transplant. Here was a man who was failing in his health, yet had the fortitude to face every day as a new challenge, to do what he wanted to do, to accomplish successes that had never been accomplished before. Here was a man who embodied the drive and the spirit that so many cancer survivors possess every day of their lives, even when facing the ultimate moment as Steve Jobs faced today.

Continue reading →

FILED UNDER: You're the Boss, cancer treatment, End of Life Care, steve jobs