Category Archives: Palliative Care

Medicare experiment could signal sea change for hospice

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Diane Meier 176By Michelle Andrews
KHN / JUL 29, 2014

Diane Meier is the director of the Center to Advance Palliative Care, a national organization that aims to increase the number of palliative care programs in hospitals and elsewhere for patients with serious illnesses.

Meier is also a professor of geriatrics and palliative medicine at the Icahn School of Medicine at Mount Sinai in New York City.

We spoke about a recently launched pilot program under the health law that allows hospice patients participating in the pilot to continue to receive life-prolonging treatment. This is an edited version of that conversation.

Q. There’s a lot of confusion about how hospice care differs from palliative care. Maybe we should start by clearing up what those terms mean. Continue reading

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Death with Dignity Act prescriptions rise 43 percent

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Washington MapThe number of Washington state residents who obtained prescriptions for a lethal dose of drugs under the state’s Death with Dignity Act rose from 121 in 2012 to 175 in 2013, a 43% increase over the previous year.

Of the 159 who died

  • 77 percent had cancer
  • 15 percent had a neuro-degenerative disease, including amyotrophic lateral sclerosis (also known as Lou Gehrig’s disease).
  • 8 percent had other conditions, including heart and respiratory disease,

Their ages ranged from 29 to 95 years. Ninety-seven percent were white, and 76% had some college education. Ninety-five percent lived west of the Cascades.

Of the 159 who died, 119 ingested the medication and 26 did not. In 14 cases, it is unknown whether they took the medicines.

Reasons that patients gave for obtaining the lethal prescriptions included

  • Concerns about loss of autonomy – 91 percent
  • Concerns about loss of dignity – 79 percent
  • Concerns about loss of the ability to participate in activities that make life enjoyable – 89 percent.

Under the state’s Death with Dignity Act, terminally ill adult patients have had the right to ask their physician to prescribe a lethal dose of medication to end their life. Since the law’s enactment, 550 people have acted on that right since the law went into effect.

The 2013 Death with Dignity Act Report and information about the Washington State Death with Dignity Act are on the agency website.

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Medicare to consider paying doctors for end-of-life planning

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End of life factBy Michael Ollove
Stateline staff Writer

The federal government may reimburse doctors for talking to Medicare patients and their families about “advance care planning,” including living wills and end-of-life treatment options — potentially rekindling one of the fiercest storms in the Affordable Care Act debate.

A similar provision was in an early draft of the federal health care law, but in 2009, former Republican vice-presidential candidate Sarah Palin took to Facebook to accuse President Barack Obama of proposing “death panels” to determine who deserved life-sustaining medical care. Amid an outcry on the right, the provision was stripped from the legislation.

Now, quietly, the proposal is headed toward reconsideration — this time through a regulatory procedure rather than legislation. Continue reading

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Making palliative care more available to children

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Conversations matter palliative care

From the National Institute of Nursing Research

January 10, 2014 – New Palliative Care: Conversations Matter campaign helps ensure children with serious illnesses and their families get supportive care

A campaign just launched by the National Institute of Nursing Research (NINR) aims to increase the use of palliative care — comprehensive treatment of the discomfort, symptoms, and stress of serious illness — for children with serious illness.

Palliative care can reduce a child’s pain, help manage other distressing symptoms, and provide important emotional support to the child and family throughout the course of an illness. Continue reading

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Hospitals must disclose how mergers will affect access to reproductive services, end-of-life care

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H for hospitalHospitals and medical groups in Washington state planning to merge or affiliate must now disclose how the proposed agreement will affect access to reproductive services, such as contraception and abortion, and end-of-life care, according to new rules announced Monday by the Washington State Department of Health.

Earlier this year, Gov. Jay Inslee directed the Department of Health to assess its rules governing such mergers in response to growing concerns that hospitals merging with hospital systems run by the Roman Catholic Church would no longer provide contraceptive prescriptions, contraceptive services, such as tubal ligation or vasectomy, and abortion or end-of-life care that the church considered to be euthanasia.

Under the new rules, before transfer of ownership can take place, the parties involved must submit copies of policies on admission, non-discrimination, end-of-life care, and reproductive health care services to state health officials. This information must then be posted on both the hospital and Department of Health websites for the public to see. The rules go into effect early next year.

“As hospitals look to join together, many people have asked for the opportunity to provide input into these mergers. Requiring the certificate of need process will allow the public to provide comments,” the Washington State Department of Health said in a statement announcing the new rules.

Here is the full text of the announcement:

Hospital mergers/expansion rules amended to give the public a voice

OLYMPIA – Rules filed with the state code reviser today will improve access to information on services hospitals provide and give people a voice on proposed hospital affiliations.

The state Department of Health filed the rule revision after Gov. Jay Inslee directed the agency to assess rules about when a certificate of need review should be required with regard to changes in hospital control. The governor also asked the agency to consider ways to improve how information about medical facilities is made available to the public.

The certificate of need review process supports planned and orderly development of health care services and facilities. Certificate of need work includes developing new hospitals and expanding existing hospitals; the sale, purchase, or lease of all or part of a hospital; adding bed capacity in a nursing home; and more.

The rules filed today require a certificate of need application for any sale, purchase, or lease of a medical facility. That includes when a hospital enters into an arrangement that transfers control of the facility from one entity to another.

Before a transfer of ownership can take place, facilities must submit copies of policies on admission, non-discrimination, end-of-life care, and reproductive health care services to state health officials. All of that information will be posted on both the hospital and Department of Health websites for public access.

As hospitals look to join together, many people have asked for the opportunity to provide input into these mergers. Requiring the certificate of need process will allow the public to provide comments. The rule also makes important information about the facilities available to everyone.

The new rules go into effect Jan. 23, 2014 – 31 days after filing with the code reviser. After that date, all hospitals have an additional 60 days to submit policies to the department.

The updated certificate of need process helps ensure transparency with health care facilities and those who use them, and helps people make informed decisions on where to get medical care.

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Beginning end-of-life care at the dinner table

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Michael Hebb

By Ankita Rao

Michael Hebb wants you to pass the butter, and then talk about passing on.

As the founder of “Let’s Have Dinner and Talk About Death,” he urged Americans to engage in a conversation about how they want to die, a conversation that could change the high cost of caring for the terminally ill and grant patients their ultimate requests.

“Our hope is to spark the gentlest revolution imaginable,” he said at the TEDMED conference on Thursday evening.

Hebb’s talk was part of a session called “Welcoming Death Into Life,” which included talks by an opera singer who had undergone two lung transplants, an ER doctor-turned-engineer, and an anthropologist who studied an Indonesian tribal community that sometimes waits years to have a funeral when someone dies.

Hebb, a culinary showman, pointed to statistics that show that 75 percent of the population said they wanted to die at home, but only 25 percent did. The audience also murmured in surprise at a slide showing that 43 percent of Medicare recipients spend all of their assets on end-of-life care.

But journalist Amanda Bennet, author of “The Cost of Hope,” offered the counterpoint and a window into why end-of-life care is so expensive as she told her story about how difficult it is to allow a family member to die, even when his prognosis is grim.

Bennet’s husband lived for seven years after being diagnosed with kidney cancer, a time span that included close calls, aggressive therapy and remission. She said that she and her husband were an adventurous and strong couple, and the idea that there was no hope never crossed their minds.

“We had a heroic narrative for fighting together, but we didn’t have a heroic narrative for letting go,” she said.

Bennet said that she and her husband had advance directives – a sort of living will for ill patients – and expert advice not to continue his treatment, but there was a combination of denial and optimism that overshadowed decisions during that time.

Hebb said wills and directives should be openly discussed with close friends and family. Coupled with the power of sharing a meal, he said a dialogue about death could lead to a more fulfilling life, if patients were willing to have it.

“We need a patient revolution to change the cost of death,” he said.

And while Bennet said she wouldn’t replace their last seven years together, she realized when her husband died that they had never said goodbye.

“We never got the chance to turn to each other to say, ‘Hey buddy, it’s been a hell of a ride’,” she said.

This article was reprinted from kaiserhealthnews.org with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonpartisan health care policy research organization unaffiliated with Kaiser Permanente.

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How mom’s death changed my thinking about end-of-life care

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Charles Ornstein with his mother Harriet Ornstein on his wedding day, weeks after she was mugged in a parking lot and knocked to the pavement with a broken nose. (Randall Stewart, Photo courtesy of Charles Ornstein)

Charles Ornstein with his mother Harriet Ornstein on his wedding day, weeks after she was mugged in a parking lot and knocked to the pavement with a broken nose. (Randall Stewart, Photo courtesy of Charles Ornstein)

by Charles Ornstein
ProPublica

This story was co-published with The Washington Post.

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.

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.

In this situation, like so many before, I was expected to have some answers. Yet none of my years of reporting had prepared me for this moment, this decision. In fact, I began to question some of my assumptions about the health-care system.

I’ve long observed, and sometimes chronicled, the nasty policy battles surrounding end-of-life care. And like many health journalists, I rolled my eyes when I heard the phrase “death panels” used to describe a 2009 congressional proposal that would have allowed Medicare to reimburse physicians who provided counseling to patients about living wills and advance directives.

The frenzy, whipped up by conservative politicians and talk show hosts, forced the authors of the Affordable Care Act to strip out that provision before the bill became law.

Politics aside, I’ve always thought that the high cost of end-of-life care is an issue worthy of discussion. About a quarter of Medicare payments are spent in the last year of life, according to recent estimates.

And the degree of care provided to patients in that last year — how many doctors they see, the number of intensive-care hospitalizations — varies dramatically across states and even within states, according to the authoritative Dartmouth Atlas.

Studies show that this care is often futile. It doesn’t always prolong lives, and it doesn’t always reflect what patients want.

In an article I wrote for the Los Angeles Times in 2005, I quoted a doctor saying: “There’s always one more treatment, there’s always one more, ‘Why don’t we try that?’ … But we have to realize what the goals of that patient are, which is not to be in an intensive-care unit attached to tubes with no chance of really recovering.”

That made a lot of sense at the time. But did it apply to my mom?

We knew her end-of-life wishes: 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? How did we know if the doctors and nurses were right?

In all my reporting, I’d never realized how little the costs to the broader health-care system matter to the family of a patient. When that patient was my mother, what mattered was that we had to live with whatever decision we made. And we wouldn’t get a chance to make it twice.

As my mom lay in the ICU, there was no question that her brain function was worrisome. In the hours after she was revived, she had convulsions, known as myoclonus, which can happen if the brain lacks oxygen. After that, she lay still. When the neurologist pricked her with a safety pin, she didn’t respond. When he touched her corneas, they didn’t reflexively move.

I began checking the medical literature, much like I do as a reporter. I didn’t find anything encouraging. Studies show that after 72 hours in a coma caused by a lack of oxygen, a patient’s odds of recovery are slim to none. I asked my writing partner in New York to do additional research. She, too, found nothing that would offer much hope.

But couldn’t my mom beat the odds? Harriet Ornstein was a feisty woman. At age 70, she had overcome adversity many times before. In 2002, weeks before my wedding, she was mugged in a parking lot and knocked to the pavement with a broken nose. But she was there to walk me down the aisle — black eyes covered by makeup.

She had Parkinson’s disease for a decade, and in 2010 she suffered a closed head injury when a car backed into her as she walked down a handicapped ramp at the drugstore. Mom persevered, continuing rehabilitation and working to lead as normal a life as possible. Might she not fight through this as well?

Truth be told, I was already somewhat skeptical about physician predictions. Just last summer, my dad’s heart stopped, and it took more than 10 minutes of CPR to revive him. Doctors and nurses said a full neurological recovery was unlikely. They asked about his end-of-life choices.

Mom and I stayed up late talking about life without him and discussing the logistics of his funeral. But despite it all, he rebounded. He was home within weeks, back to his old self. I came away appreciative of the power of modern medicine but questioning why everyone had been so confident that he would die.

Also weighing on me was another story I wrote for the Los Angeles Times, about a patient who had wrongly been declared brain-dead by two doctors. The patient’s family was being urged to discontinue life support and allow an organ-donation team to come in.

But a nursing supervisor’s examination found that the 47-year-old man displayed a strong gag-and-cough reflex and slightly moved his head, all inconsistent with brain death. A neurosurgeon confirmed her findings.

No one was suggesting that my mom was brain-dead, but the medical assessments offered no hint of encouragement. What if they were off-base, too?

Over dinner at the Chinese restaurant, we made a pact: We wouldn’t rush to a decision. We would seek an additional medical opinion. But if the tests looked bad — I would ask to read the actual clinical reports — we would discontinue aggressive care.

A neurologist recommended by a family acquaintance came in the next morning. After conducting a thorough exam, this doctor wasn’t optimistic, either, but she said two additional tests could be done if we still had doubts.

If more tests could be done, my dad reasoned, we should do them. My sister and I agreed.

On Friday morning, the final test came back. It was bad news. In a sterile hospital conference room, a neurologist laid out our options: We could move my mom to the hospice unit and have breathing and feeding tubes inserted. Or we could disconnect the ventilator.

We decided it was time to honor my mom’s wishes. We cried as nurses unhooked her that afternoon. The hospital staff said it was unlikely that she would breathe on her own, but she did for several hours. She died peacefully, on her own terms, late that night — my dad, my sister and I by her side.

I don’t think anyone can ever feel comfortable about such a decision, and being a health reporter compounded my doubts.

I was fairly confident that we did what my mom would have wanted. But a week later, when I was back in New York and had some emotional distance, I wondered how our thinking and behavior squared with what I’d written as a reporter. Did we waste resources while trying to decide what to do for those two extra days? If every family did what we did, two days multiplied by thousands of patients would add up to millions of dollars.

Curious how experts would view it, I called Elliott S. Fisher. I’ve long respected Fisher, a professor of medicine at Dartmouth and a leader of the Dartmouth Atlas.

The Atlas was the first to identify McAllen, Texas, subject of a memorable 2009 piece in the New Yorker by Atul Gawande, for its seemingly out-of-control Medicare spending.

I asked Fisher: Did he consider what my family did a waste of money?

No, he said. And he wouldn’t have found fault with us if we decided to keep my mom on a ventilator for another week or two, although he said my description of her neurological exams and test results sounded pessimistic.

“You never need to rush the decision-making,” he told me. “It should always be about making the right decision for the patient and the family. … We have plenty of money in the U.S. health-care system to make sure that we’re supporting families in coming to a decision that they can all feel good about. I feel very strongly about that.”

Plenty of money? How did this mesh with his view that too much money is spent on care at the end of life? He said his concern is more about situations in which end-of-life wishes aren’t known and cases where doctors push treatments for terminal illnesses that are clearly futile and that may prolong suffering.

“I don’t think the best care possible always means keeping people alive or always doing the most aggressive cancer chemotherapy,” he said, “when the evidence would say there is virtually no chance for this particular agent to make a difference for this patient.”

I left the conversation agreeing with Fisher’s reasoning but believing that it’s much harder in practice than it is in theory. You can know somebody’s wishes and still be confused about the appropriate thing to do.

The past few weeks have been the most difficult of my life. I hope what I learned will make me a better, more compassionate journalist.

Most of all, I will always remember that behind the debate about costs and end-of-life care, there are real families struggling with real decisions.

Senior reporter Charles Ornstein is board president of the Association of Health Care Journalists and can be reached at charles.ornstein@propublica.org.

Want to know more? Follow ProPublica on Facebook and Twitter, and get ProPublica headlines delivered by e-mail every day.

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Aggressive care still the norm for dying seniors

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By Alvin Tran

Although federal data show that fewer Medicare beneficiaries are dying in hospitals, new research suggests that doesn’t mean they’re getting less aggressive care in their final days.

Physician and Nurse Pushing Gurney

Researchers at the Warren Alpert School of Medicine at Brown University and others reported in the Journal of the American Medical Association Tuesday that 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.

The rate of changes to care for these patients, such as transitions within the last three days of life, also increased.

To Dr. Joan Teno, the study’s lead author, the increased use of hospice is encouraging, but she 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.”

The findings came from an analysis of Medicare claims data from a random sample of more than 800,000 seniors 66 years and older, who died in 2000, 2005, and 2009.

“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.”

While a 2010 report by the federal Centers for Disease Control and Prevention has looked at the patient’s location at death, researchers in this study examined beneficiaries’ medical claims for the last 180 days of life.

Hospice use at the time of death increased from nearly 22 percent in 2000 to 42 percent in 2009, the authors reported, but short stays of three days or less went from 22 to 28 percent. And four in 10 of those short stays came after time in a hospital ICU.

According to Teno, the study’s findings, particularly the increase in the number of short hospice stays following hospitalizations, suggest that aggressive care at the end of life is growing. “We really need to improve our referral patterns to make sure that people are receiving the appropriate and timely access to palliative care services at the end of the life,” she said.

Jon Radulovic, the vice president of communications of the nonprofit National Hospice and Palliative Care Organization, says the study adds to concerns about end-of-life care. “With the number of patients (in hospice) who die under seven days or less, it’s questionable whether the patient and family caregivers are able to fully benefit from the unique services that hospice offers,” he said.

With some provisions of the federal health law set to take effect in 2014, Teno sees an opportunity to hold institutions more accountable.

“The opportunity under health care reform is to really pay for quality and not pay for another day in the ICU,” she said. “Our fee-for-service system has probably resulted in overutilization of care and really, what we want to do is get the right care at the right time, for the right person, at the right location. And we want to respect the patient’s right to choose.”

This article was reprinted from kaiserhealthnews.org with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonpartisan health care policy research organization unaffiliated with Kaiser Permanente.

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Washington state moves to address epidemic of prescription painkiller overdose deaths – BMJ

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A feature article on efforts in Washington state to address the epidemic of prescription painkiller overdose deaths by LocalHealthGuide editor Michael McCarthy appears this week in the BMJ, the journal of the British Medical Society.

Containing the opioid overdose epidemic

In the late 1990s, Washington State began to relax its rules regulating the prescription of opioids. Shortly thereafter, overdose deaths began to climb.

“We saw the deaths increase within a year,” says Gary Franklin, medical director for the Washington Department of Labor and Industries, which administers compensation for job related injuries and illnesses for more than 3.2 million workers in the state.

“These were productive people who were working the day they came into the system with a back sprain or whatever, and three years later they were dead from an accidental overdose of opioids,” Franklin says. “I had never seen anything so sad.” . . .

Read the full article on the BMJ website.

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End-of-life discussions lead to less aggressive care, more use of hospice

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By Carmen Phillips
NCI Cancer Bulletin 

Patients with advanced cancer who discussed end-of-life care with their doctors earlier in the course of their illness had care that was less aggressive in their last month of life and were more likely to use hospice services, according to a new study.

Earlier discussions may help to ensure that care at the end of life is more consistent with patients’ preferences, the study authors explained.

Yet, on average, these discussions took place about 1 month before a patient died, they found.

The study was published online November 13 in the Journal of Clinical Oncology (JCO).

Although some patients may wish to have aggressive care at the end of life, “most patients who recognize that their cancer is terminal want to receive less-aggressive care,” the study’s lead investigator, Dr. Jennifer Mack of the Dana-Farber Cancer Institute, said in a news release.

The American Society of Clinical Oncology and other groups recommend that discussions about palliative and end-of-life care begin shortly after a patient has been diagnosed with advanced cancer.

Several studies have found that such discussions between physicians and patients with advanced cancer are often delayed until late in a patient’s life, if they take place at all.

For example, an earlier study by Dr. Mack and her colleagues found that oncologists had end-of-life care discussions with only about one-quarter of their patients, and, when the end-of-life care discussions took place, they often happened in the hospital during episodes of acute care.

In the new study, researchers analyzed patient (or patient surrogate) interviews and the medical records of more than 1,200 patients with end-stage lung or colorectal cancer regarding discussions about end-of-life care, including resuscitation and hospice care.

All patients in the study lived for at least 1 month after diagnosis and were participants in the NCI-funded Cancer Care Outcomes Research and Surveillance Consortium.

Almost half of the patients had at least one form of aggressive care in the last month of their lives: 16 percent of patients underwent chemotherapy within the last 2 weeks of life, 40 percent received acute care in the hospital within the last 30 days of life, and 6 percent were treated in the intensive care unit in the last 30 days of life.

Patients who had end-of-life care discussions earlier, however, were much less likely to receive aggressive care and more likely to receive hospice care.

Most patients who recognize that their cancer is terminal want to receive less-aggressive care. —Dr. Jennifer Mack

The results “really highlight that much more work needs to be done to address this long-standing problem,” said Dr. Ann O’Mara, a program director in NCI’s Division of Cancer Prevention who leads the institute’s palliative care research program.

In a March 2012 interview with the NCI Cancer Bulletin, Dr. Thomas Smith, director of palliative care for the Johns Hopkins Sidney Kimmel Comprehensive Cancer Center, noted that discussions about palliative care should begin shortly after diagnosis, even with patients who do not have a terminal cancer. However, these discussions are particularly important for patients with incurable cancers, he said.

“Most [oncologists] choose not to have discussions about things like hospice, do-not-resuscitate [orders], and advance medical directives until there are no more chemotherapy options left,” he said. “That allows us to avoid a hard conversation, but it doesn’t serve as well to prepare the patients and families for what’s coming.”

Less-aggressive care near the end of life can clearly benefit patients and their families, Dr. Mack commented.

Aggressive end-of-life care has been linked to a higher risk of depression among caregivers after the patient has died, she explained. And for patients, less-aggressive care can mean “a better quality of life in their final days, because there is a greater focus on symptom management and they are more often able to receive care in their homes,” she said.

Now that several studies (for example, here and here) have documented that earlier palliative care can improve patients’ quality of life and, in some cases, may have improved survival, Dr. O’Mara believes the time is ripe for “an intervention trial that examines the timing and frequency of doctor-patient conversations and the impact they have on patients and families,” particularly with regard to care decisions and their psychosocial impact on family members and caregivers.

This research was supported by grants from the National Institutes of Health (U01 CA093344, U01 CA093332, U01 CA093324, U01 CA093348, U01 CA093329, U01 CA093339, and U01 CA093326).

Further reading: “Last Days of Life” and “Palliative Care Improves Survival, Quality of Life in Advanced Lung Cancer

The NCI Cancer Bulletin is an award-winning biweekly online newsletter designed to provide useful, timely information about cancer research to the cancer community. The newsletter is published approximately 24 times per year by the National Cancer Institute (NCI), with day-to-day operational oversight conducted by federal and contract staff in the NCI Office of Communications and Education. The material is entirely in the public domain and can be repurposed or reproduced without permission. Citation of the source is appreciated.

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Good Reads on the Web: From womb to tomb and other stories.

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By Shefali S. Kulkarni
KHN Reporter 

Every week, KHN reporter Shefali S. Kulkarni selects interesting reading from around the Web.

New York Magazine: A Life Worth Ending

Detail from a painting by Ambrogio Lorenzetti showing Temperance contemplating an hour glass.I will tell you, what I feel most intensely when I sit by my mother’s bed is a crushing sense of guilt for keeping her alive. Who can accept such suffering—who can so conscientiously facilitate it? … In 1990, there were slightly more than 3 million Americans over the age of 85. Now there are almost 6 million. By 2050 there will be 19 million—approaching 5 percent of the population. … By promoting longevity and technologically inhibiting death, we have created a new biological status held by an ever-growing part of the nation, a no-exit state that persists longer and longer, one that is nearly as remote from life as death, but which, unlike death, requires vast service, indentured servitude really, and resources. … The longer you live the longer it will take to die (Michael Wolff, 5/20).

CNN: Cost Of Children’s Health Care Hitting Families Harder

[Heather Bixler] was leaving her New York apartment with her 4-year-old daughter and infant son, who was in a baby carriage. … The doorman, perhaps just to play around, picked up the stroller and held it almost vertical. Sean, the baby, fell out. His head bashed against the marble stair. … Two years ago, the seizures started. So did the never-ending medical expenses. The Bixler family is just one example of how a child’s chronic illness can strain a family emotionally and financially — and children represent the fastest growing health care spending group in America, according to a new report (Elizabeth Landau, 5/21).

Time Magazine: Why Some Medical Students Are Learning Their Cadavers’ Names

At Indiana University Northwest, an IU branch campus located in Gary, Ind., anatomy professor Ernest Talarico instructs his medical students to probe beyond the nerves and muscles of the bodies lying on their examination tables and think of the cadavers as their “first patients.” … His students also typically exchange letters with family members to glean more information about their patients’ medical histories, hobbies and interests. … While Talarico has won praise from many of the individuals involved in the program, he’s also raised concerns among critics who question the ethics of his teaching technique (Dina Fine Maron, 5/17).

PBS NewsHour: Baby’s Tumor Means Surgery Before Birth

Before Cami was born, a huge tumor began growing from her lower body and injured her hips and internal organs. To save her life, doctors had to operate on Cami en utero, half her body still inside a special incision in her mother Tami Dobrinski’s womb. … Cami’s tumor, called a sacrococcygeal teratoma, is just one example of an uncommon category of tumors and cancerous growths that can occur in unborn children — a teratoma like hers occurs in only one in 35,000 infants. … hospitals that don’t specialize in fetal care are not always familiar with all the possible treatments for rare conditions (Monty Tayloe, 5/18).

ABC News: Truvada Helps Couple Cope With Reality of Love and HIV

Nick Literski, 45, and Wes Tibbett, 39, have been together for six years, and their bond is strong. But when Tibbett was diagnosed with HIV in 2009, it was a major blow to the Seattle couple. Tibbett became terrified of giving the virus to Literski. … According to the U.S. Center for Disease Control and Prevention, correct and consistent condom use greatly reduces the risk of HIV transmission. So does being in a monogamous, long-term relationship. But Tibbett and Literski still worried. Then both men started taking a daily pill, Truvada (Carrie Gainn, 5/21).


This article was reprinted from kaiserhealthnews.org with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonpartisan health care policy research organization unaffiliated with Kaiser Permanente.

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PET scan of the brain of a person with Alzheimer's disease howing a loss of function in the temporal lobe

U.S. launches plan to prevent Alzheimer’s and improve care

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By Christian Torres

The Obama administration is moving forward with an ambitious, fast-moving agenda to improve the treatment of Alzheimer’s disease and unlock a method to prevent it by 2025.

The final draft of the plan, released today, also sets up a wide-ranging effort to improve the care that Alzheimer’s patients receive and support families.

I am not alone – alzheimers.gov

As many as 5.1 million Americans are diagnosed with Alzheimer’s disease, and that number could more than double in the next few decades, said Health and Human Services Secretary Kathleen Sebelius when she unveiled the plan at a National Institutes of Health summit on Alzheimer’s-related research.

The majority of the plan’s expected funding – $130 million over the next two years – will go toward NIH research, but another $26 million will go toward Alzheimer’s care and public awareness.

Chief among those is a government website, alzheimers.gov, also launched Tuesday. The site serves as a “one-stop shop,” Sebelius said, for patients and their families.

It features information on Alzheimer’s diagnosis, caregiver support, insurance coverage and clinical trials for new treatments.

A radio, TV and print campaign will promote the site beginning this summer and encourage families to plan ahead for the care of their loved ones.

The site will also serve as a resource for health care providers, featuring up-to-date information on how to diagnose and treat Alzheimer’s.

Sec. Kathleen Sebelius

Secretary Kathleen Sebelius

Sebelius noted that the health law requires Medicare providers to check patients for cognitive impairment during annual wellness visits, but it will be increasingly important for all providers to have guidelines for Alzheimer’s diagnosis and to look for signs of illness prior to age 65.

The online resources will complement several on-the-ground initiatives. Grants are being awarded this summer to educational centers that work with geriatricians, nurses and others to develop new curricula and training programs.

Sebelius said that the administration’s goal is to “improve the care, immediately, that people with the disease receive.”

In addition, the administration plans to evaluate how Alzheimer’s patients fare within new health care models, like the medical homes and accountable care organizations being promoted by the health law.

Reviews will focus on changes in patients’ cognitive function and on the efficiency of services provided. Work on that front is projected for completion by the end of this year.

It will take much longer, though, to find new treatments, or even a preventive treatment, for Alzheimer’s. NIH Director Francis Collins said Tuesday that study of the disease is “at an exceptional moment.”

He went on to announce two major research grants: one will evaluate a nasal spray that could improve patients’ brain function; the other will test a preventive medication among a large family in Colombia whose members have a genetic predisposition to Alzheimer’s.

Know where to turn: alzheimers.gov

The national plan for Alzheimer’s has been through several months of development since President Barack Obama signed the National Alzheimer’s Project Act in January 2011.

Funding, however, remains an issue. The administration announced in February it would devote $156 million over two years to the national plan.

Immediately, $50 million of already available NIH funds were transferred to Alzheimer’s-related projects. Another $80 million was requested as part of the president’s Fiscal Year 2013 budget, which has yet to be passed by Congress.

Much of the $26 million going toward Alzheimer’s care and awareness is also awaiting approval.

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This article was reprinted from kaiserhealthnews.org with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonpartisan health care policy research organization unaffiliated with Kaiser Permanente.

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American Pain Foundation shuts down as senators launch investigation of prescription narcotics

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by Charles Ornstein and Tracy Weber
ProPublica, May 8

version of this story was published in The Washington Post.

As the U.S. Senate Finance Committee launched an investigation Tuesday into makers of narcotic painkillers and groups that champion them, a leading pain advocacy organization said it was dissolving “due to irreparable economic circumstances.”

The American Pain Foundation, which described itself as the nation’s largest organization for pain patients, was the focus of a December investigation by ProPublica in The Washington Post that detailed its close ties to drugmakers.

The group received 90 percent of its $5 million in funding in 2010 from the drug and medical-device industry, ProPublica found, and its guides for patients, journalists and policymakers had played down the risks associated with opioid painkillers while exaggerating the benefits.

It is unclear whether the group’s announcement Tuesday evening — that it would “cease to exist, effective immediately” — was related to letters sent earlier in the day from Sens. Max Baucus, D-Mont., the finance panel chairman, and Charles Grassley, R-Iowa, to the foundation, drug companies and others.

In the letters, the senators cited an “an epidemic of accidental deaths and addiction resulting from the increased sale and use of powerful narcotic painkillers,” including popular brand names like Oxycontin, Vicodin and Opana.

Opioids were involved in 14,800 overdose deaths in 2008, more than cocaine and heroin combined.

Growing evidence, they wrote, suggests that drug companies “may be responsible, at least in part, for this epidemic by promoting misleading information about the drugs’ safety and effectiveness.”

The American Pain Foundation’s website carried a statement Tuesday night saying its board had voted May 3 to dissolve the organization because it couldn’t stay “operational.” The foundation did not respond to requests for comment Tuesday.

The senators are targeting a who’s who of the pain industry, seeking extensive records and correspondence documenting the links, financial and otherwise, between them and the makers of the top-prescribed narcotic painkillers.

Letters went to three pharmaceutical companies, Purdue Pharma, Endo Pharmaceuticals and Johnson & Johnson, as well as five groups that support pain patients, physicians or research: the American Pain Foundation, American Academy of Pain Medicine, American Pain Society, Wisconsin Pain & Policy Studies Group, and the Center for Practical Bioethics.

The Federation of State Medical Boards, the trade group for agencies that license doctors, received a letter, as did The Joint Commission, an independent nonprofit that accredits hospitals nationwide and made pain management a national priority in 2001.

A report by the U.S. Government Accountability Office in 2003 noted that the commission partnered with Purdue Pharma, the maker of Oxycontin, to distribute pain educational materials nationwide. The committee’s letter to Purdue noted that the company pleaded guilty in 2007 to federal criminal charges that it misled regulators, physicians and consumers about Oxycontin’s risk of addiction.

The senators requested payment information since 1997 to 10 groups and eight people, including two doctors featured in ProPublica’s December report.

They asked about any influence the companies had on a 2004 pain guide for physicians that was distributed by the Federation of State Medical Boards; on the American Pain Society’s guidelines; and on the American Pain Foundation’s Military/Veterans Pain Initiative.

In addition to citing ProPublica’s work, the letters also mention the reporting of the Milwaukee Journal Sentinel and MedPage Today.

Patients in serious pain need access to opioids, the senators wrote, but drugmakers and health-care groups “must distribute accurate information about these drugs in order to prevent improper use and diversion to drug abusers.”

“The problem of opioid abuse is bad and getting worse,” Sen. Grassley said in a statement. “Something has to change.”

Earlier Coverage:

“When it comes to these highly addictive painkillers, improper relationships between pharmaceutical companies and the organizations that promote their drugs can put lives at risk,” Baucus said in a prepared statement.

Dr. Andrew Kolodny, chairman of psychiatry at Maimonides Medical Center in Brooklyn, N.Y., and president of Physicians for Responsible Opioid Prescribing, applauded the investigation.

“These groups, these pain organizations … helped usher in an epidemic that’s killed 100,000 people by promoting aggressive use of opioids,” Kolodny said. “What makes this especially disturbing is that despite overwhelming evidence that their effort created a public health crisis, they’re continuing to minimize the risk of addiction.”

Concerns about the overuse and abuse of painkillers have intensified in recent years. As sales of the powerful drugs have boomed — rising 300 percent since 1999 — so, too, have overdose deaths.

Opioids were involved in 14,800 overdose deaths in 2008, more than cocaine and heroin combined, according to the U.S. Centers for Disease Control and Prevention.

In 2009, the use and misuse of the drugs were cited in more than 475,000 emergency department visits, nearly doubling the 2004 number, the CDC said.

Pain doctors and patient groups say that while drug overdoses are a legitimate concern, only a small percentage of deaths involves patients who receive them from their doctors. Most deaths involve illicitly obtained drugs, statistics show.

The groups also say that patients’ risk is low if they do not have addictive personalities, and that any restrictions should not punish patients who suffer from serious pain.

In recent weeks, two articles in medical journals have documented different aspects of abuse.

According to a paper published online this week by the Archives of Pediatrics & Adolescent Medicine, one of every eight high school seniors surveyed said they had used prescription opioids for nonmedical reasons.

A paper released last month by The Journal of the American Medical Association found that the rate of newborns diagnosed with drug withdrawal jumped threefold from 2000 to 2009.

And the rate of mothers using opioids at the time of delivery was five times higher in 2009. (Not all babies born to mothers using the drugs exhibit signs of withdrawal.)

Janssen Pharmaceuticals, a Johnson & Johnson subsidiary that makes the painkiller Nucynta, said in a statement that it “is committed to the responsible prescribing and appropriate use of opioid pain medications” and has supported educational websites about safe use.

The company is reviewing the senators’ letter and “will work with them to fulfill their request for information,” spokesman Mark Wolfe said via email.

Purdue Pharma acknowledged in a statement that it had received the letter, was reviewing it and looked forward to “cooperating with the committee on this matter.”

Endo did not return a request for comment. A spokeswoman for The Joint Commission said the group had just received the senators’ letter and had no comment yet. The Federation of State Medical Boards responded but did not offer immediate comment.

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Doctors prescribed lethal prescriptions for 103 last year under state’s Death With Dignity Act

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Washington physicians wrote lethal prescriptions for 103 patients with terminal illnesses in 2011 under the state’s Death With Dignity Act, the Washington State Department of Health reported Wednesday.

Of the 103 who received prescriptions last year, 94 are known to have died. Seventy of these died after taking the medication. Nineteen died without taking the medication. In five deaths, it is not known whether or not they took the medication. For the remaining 9, it is not known if they have died.

Under the Act, physicians can prescribe–but not administer–lethal doses of medications to adult Washington State residents with terminal illnesses who are expected to have no more than six months to live.

Of the 70 patients who died after taking the medications, 93 percent were at home and 83 percent were enrolled in hospice care at the time.

Number of Death with Dignity Participants and Known Deaths, 2009-2011

Participation in the program increased 16 percent in 2011 from 2010.

Under Washington’s Death with Dignity Act, the Department of Health collects information from patients and providers who choose to participate, monitors compliance with reporting requirements, and produces an annual report.

Among the findings for 2011:

  • Those who died were between the ages of 41 and 101.
  • More than 90 percent lived west of the Cascades.
  • 78 percent had cancer.
  • 12 percent had neuro-degenerative disease, including Amyotrophic Lateral Sclerosis (ALS).
  • 10 percent had other illnesses, including heart and respiratory diseases

Of the 94 participants in 2011 who died, their end-of-life concerns include:

  • Loss of autonomy, 87 percent
  • Loss of dignity, 79 percent
  • Loss of the ability to participate in activities that make life enjoyable, 89 percent

Since the law went into effect in 2009, 255 terminally ill patients have received the prescriptions.

To learn more:

End of life resources

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