Category: Life Choices

Covering news regarding the discussions, values and goals of those facing life-limiting situations.

Unreasonable optimism among physicians common during end of life care

Unreasonable optimism among physicians negatively impacts patients’ end of life care- often influencing the terminally ill to accept more aggressive, costly treatments with little chance of effectiveness.

Image: Wikimedia Commons
Image: Wikimedia Commons

Haider Javed Warraich,  a resident of internal medicine at the Beth Israel Deaconess Medical Center, recounts his optimism when he first met a woman suffering from heart failure and a condition preventing blood from flowing out of her heart.

“While learning her medical history, I also got to know her,” Warraich writes. His patient was a 50 year-old former artist, derailed by addiction. “At this point, she wasn’t a suitable candidate for heart surgery. But I felt there was still hope,” he recounts in The New York Times Sunday Review.

With perseverance, Warraich convinced his colleagues to order a procedure called alcohol septal ablation. Though the procedure could potentially reduce her symptoms, it came with many risks. His patient died the next day, after a complete heart block and aggressive attempts to revive her.

Warraich explains that he was victim of “irrational optimism, a condition running rampant in both doctors and patients, particularly in end of life care.” These physicians may push for costly and more aggressive treatments as a last resort, even when there is little hope of recovery.

As a study published in 2000 for the British Medical Journal shows, about two-thirds of doctors overestimate the survival of terminally ill patients. ”Doctors are inaccurate in their prognoses for terminally ill patients and the error is systematically optimistic,” concluded the researchers, headed by Nicholas A. Christakis, then of the University of Chicago.

Many times, those poor estimates are never fully communicated to the patient. A 2001 study of cancer patients published in the Annals of Internal Medicine found that physicians only told patients their estimated survival 37 percent of the time. No estimate was given 23 percent of the time. “Around 70 percent of the discrepant estimates were overly optimistic,” Warraich notes.

A 2012 study published in the Journal of Clinical Oncology found that cancer patients who talk with their physicians about how they want to die are less likely to opt for aggressive end of life treatments in the last two weeks of life, and they have much more comfortable deaths.

“Aggressive care at the end of life for individual patients isn’t necessarily bad, it’s just that most patients who recognize they’re dying don’t want to receive that kind of care,” said lead author Dr. Jennifer Mack of Harvard University Medical School.

Similarly, Warraich suggests more palliative care for patients unlikely to survive a serious illness. “Modern palliative care originated in response to the proliferation of new treatments and resuscitation technologies,” he writes. Palliative care not only provides more comfort alongside standard treatments, but it has been shown to help patients live a little longer.

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Hope or denial in the face of death?

Pulitzer Prize winner recounts personal love story

Bennett 8.57.34 AM
Bennett family picture

What medical experts call denial, Amanda Bennett calls hope.

The Pulitzer Prize winning journalist and caregiver to her husband, Chinese historian Terrence Foley, sought to reframe the role of denial in the face of terminal illness during her presentation at the TEDMED 2013 conference in Washington, D.C.

“Denial isn’t even close to a strong enough word to describe what those of us facing the death of our loved ones go through,” says Bennett, whose recent book, The Cost of Hope, outlines the story of her quarter century romance with Foley, with whom she traveled the world and had two children.

Despite his cancer diagnosis, Foley thrived personally- traveling with his family to multiple continents, coaching Little League and even earning his Ph.D. in his 60s.

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

Mysteriously, Bennett says, he continued to surpass all expectations. Meanwhile, she buried herself in internet research in search of a cure that was not to be found.

His health dramatically declined in December 2007, and as Foley began to spit blood during what would be his last stay in intensive care, his doctors asked Bennett what she wanted them to do.

The couple had advance directives in place, directives that ordered doctors to do nothing if no further hope was to be had.

“Keep him alive if you can,” she told his physicians. After all, Foley had repeatedly dodged all dire predictions for the past seven years and had recently started a new regimen of experimental therapy. Bennett continued to hang on to the slightest of indications that he could continue to live.

As her husband’s health worsened over the next week, she grew more resolute. “We believed if we were smart enough, strong enough, brave enough and worked hard enough, we could keep him from dying forever,” Bennett recalls.

But Foley died December 14th, 2007, and Bennett says she never said goodbye.

“We pushed the fight right over the edge, and I never got the chance to say to him, ‘hey buddy, it was a hell of a ride,’ ” Bennett remembers, noting in retrospect, that no wife- no matter how hard she tries- can stop the bravest of husbands from dying when it is his time.

Hope

Bennett would not consider hospice, because to her it meant defeat.

“We had a heroic narrative for fighting together, but we didn’t have a heroic narrative to letting go,” Bennett says, suggesting there are many “noble” paths available for curing disease, but no such culturally “noble” path to die.

If she had been able to shift her perspective, she says, perhaps watching Foley die would have been easier on them both. That perspective could be broadened: from fear of hopelessness at the end of life to, instead, repeated victories in the face of cancer, a lengthy battle, and then a graceful retreat in death.

“Not even the greatest general defeats every foe,” Bennett says, and such a framework of a triumphant, manly crusade through illness into death would have been a much more workable mindset than hope- and the subsequent lack of it.

Death, she argues, is not the enemy, but she knows most think it is.

“I believed I could keep him from dying, and I would be embarrassed to say that if I hadn’t met so many people who have felt the same way.”

For more of Bennett’s story: thecostofhope.com

-Randi Belisomo

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End of life questions from Catholics tackled at National Healthcare Decisions Day symposium

End of life questions from Catholics tackled at National Healthcare Decisions Day symposium

On National Health Care Decisions Day, the Integritas Institute for Ethics hosted a symposium to explore the ethical challenges that arise at the end of life. Roman Catholic physician Ely Wesley, a Vanderbilt University pulmonary and critical care specialist, warned fellow doctors at the University of Illinois-Chicago against the hastening of death, a process that he argued breaks both the laws of God and nature.

Wesley speaking to a room of medical professionals about the "double effect"
Wesley speaking to a room of medical professionals about the “double effect”

The physician told a room of medical professionals, graduate students and caregivers that his Catholic faith shapes his medical practice, and that the two are inextricably intertwined. “People in this room know people who are struggling with their faith and putting it into context,” he said. “I have no incentive to hasten death.”

During his lecture, Wesley made numerous references to scriptures, prayers and Catholic teaching about death and dying. “Physicians have an opportunity that a priest does not have, and our mission does not end when medicine is no longer of help,” Wesley said.

“Human life is sacred from its beginning to its end,” Wesley said, pointing to the teachings of Pope John Paul II. Even though death is not “an awful situation,” since it baptizes the faithful to Christ, he argued that hastening death removes the dignity of the ill and aged.

“How can we do a better job for our older people?” he asked, and decried secularism, ageism and the ongoing political debate about assisted suicide.

“Euthanasia is a grave violation of the law of God,” Wesley said, referencing current battles in many states over “Death with Dignity” legislation. “If you’re not religious, then it violates natural law.”

What Wesley called the “double effect” is preferable, he said, for people of faith. “Double effect” is a terminal patient’s death due to excessive pain medication. This type of death is justifiable, Wesley argued, because it does not aim to end life- only to treat pain.

Image: The Pieta, Wikimedia Commons
Image: The Pieta, Wikimedia Commons

“It’s scary” that people can purchase ways out of life, he said, noting the rising use of the “exit hood,” a contraption that allows individuals to inhale helium and end their lives. The public support and national popularity of Dr. Kevorkian- a pathologist convicted of second-degree murder for his role in a case of voluntary euthanasia- is frightening also, Wesley argued.

Caring is an honor, Wesley said, referencing a Michelangelo sculpture depicting Christ’s broken body after his crucifixion in a peaceful Mary’s arms. “Look at Mary’s face in the Pieta.”

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LMM’s Valentine’s Day message in The Huffington Post

Life Matters Media co-founder Mary F. Mulcahy, M.D., has shared advice about pacemakers and caring for the aged in a new feature for The Huffington Post. She continues to spread the message of advance care planning.

George Hodan
Image: George Hodan

“Our attention turns to the heart this time of year, as signs of Valentine’s Day surround us. It is the organ that works harder than any other muscle in the body, with an electrical system that fires more than 3 billion times within an average lifetime. Starting with the first “whoosh” heard during an obstetrician’s office visit and working until that flat line we see on all-too-many doctor shows, the heart beat is the most recognizable sound known to man.

“More than 400,000 Americans each year take advantage of medical technology to replace a faulty cardiac electrical system or worn out heart muscle. But what happens when the rest of body is ready to die? Is there an appropriate time to flip off that switch? Rapid evolution of medical technology and our own lengthening life spans demand that we consider these questions.

“In the past two decades, pacemaker use in this country has increased by more than 50 percent; globally, such devices have reached even the hearts of the Vatican, as we recently learned that Pope Benedict XVI has had one installed for many years. This technology is currently enhancing the quality of life for more than 3 million of us in the United States.”

Read the rest at The Huffington Post

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Vermont Statehouse votes “Death with Dignity”

Vermont Statehouse votes “Death with Dignity”

The Vermont Senate Health and Welfare committee unanimously approved the bill known as “Death with Dignity,” which would allow some terminally ill patients to end their lives with prescription barbiturates, Vermont Public Radio reports.

More than 300 people gathered in the Vermont Statehouse Tuesday to voice opinions on the proposed “Death with Dignity.” The law would allow terminally ill patients to end their lives with prescription drugs.

Patients expected to live no longer than six months or less could be given a prescription for a lethal dose of barbiturates. Two physicians are needed to agree upon life expectancy.  Patients also must declare their wish to die three times, once in writing, within a 15-day period.

The joint session of the Senate Health and Welfare and Judiciary committees heard testimony from both sides of the issue. The Judiciary committee has not yet voted.

Judy Murphy, who still mourns the loss of a friend who she said starved herself to death to end her suffering, came to support the act. ”Not everyone would make that choice to die. But many, including myself, would have great comfort in knowing that that option is possible,” Murphy said. “She should have had the choice of death with dignity,” WCAX reports.

“The bill simply offers end-of-life choice,” said another supporter, William Wilson. “Its presence alone is comforting,” USA Today reports.

Lynn Caulfield, a registered nurse, disagreed. ”It is a sad day in Vermont when our lawyers are asking health care professionals to help human beings to die rather than extending compassionate and respectful care to ease pain and suffering,” she said.

The act still needs to pass the House and Senate before being sent to Democratic Gov. Peter Shumlin for approval.

Earlier on Tuesday, Vermont Public Radio reported the Senate Health and Welfare Committee heard from Attorney General Bill Sorrell and former Gov. Madeleine Kunin, both support the bill.

Some opponents of the act say they fear suicide’s definition will change, including Guy Page from Barre. He asked his twenty-something son, who he said struggled with suicidal thoughts as a teenager, about his thoughts on the bill.

“His response shocked me. Shaking with anger and fear he said ‘What hypocrites. Everyday my teachers tell me that killing myself is never an option. But here they are saying that suicide is ‘okay’,” Page said.

In November, Massachusetts voted against allowing physicians to prescribe life-ending drugs to terminally ill patients. Question 2, known as “Death with Dignity,” faced strong opposition from prominent physicians and the Roman Catholic Church.

Physician-assisted suicide is legal in Oregon and Washington.

Last year, a bill came before the full Vermont Senate, but it failed.

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Obesity and end of life: Weight affects care

As the U.S. continues to campaign against what some call “the obesity epidemic,” research shows that weight may affect the quality and costs of end of life care. By 2030, at least 60 percent of Americans in 13 states will be obese, according to the Centers for Disease Control.

Obesity’s effect on economics and health care

The CDC recently gave the nation an “F” for its obesity epidemic. More than 35 percent of adults and some 17 percent of children age 2 to 19 are obese.

Dr. Dean Griffin, Surgery Professor at LSU Health Shreveport, said as those numbers rise, costs of care rise and quality of care diminishes. “The cost goes up dramatically because these patients tend to stay in the hospital longer and because they have more complications, there are additional costs,” he told Louisiana’s KTBS. ”Surgery is much more difficult in patients who are overweight, that makes it very difficult, for example, to gain exposure.”

CDC
CDC

The CDC analysis found combined medical costs associated with treating preventable obesity-related diseases will increase between $48 billion and $66 billion per year in the U.S. by 2030. The loss in economic productivity could be as much as $580 billion annually by 2030.

Obese struggle with transitions from hospitals

Hospital case managers, nursing home and home care agency directors report patient size impacts transitions from hospital settings, according to a study by East Carolina University’s College of Nursing. This study is one of the few done on the issue.

“The increase in obese patients within the hospitalized patient population has become a challenge for nurses. Providing care for obese patients necessitates the use of assistive equipment and requires more staff members and more time for nursing procedures,” researchers explain.

Even home care is sometimes deemed inadequate for an obese patient due to lack of caregiver support or inappropriate facilities. Nursing home placement is often difficult for the obese due to the inability or unwillingness of some facilities to accommodate them. Patients can become “stranded in the hospital,” the report states, and “experience subsequent deterioration of vigor as well as increase in cost.”

Similarly, a recent study published in the Journal of Palliative Medicine determined obesity creates significant challenges to palliative medicine, leading to premature death and poor quality of life. U.K. researchers found privacy, handling and transfer to hospice more difficult for the obese.

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Life Matters Media featured in the Good Men Project

Photo: Mike Baird

Dr. Judi Strauss-Lipkin, 69, is the owner and principal of Strauss Financial in Chicago, Ill., and former professor of human resource management at Benedictine University. She spoke to Life Matters Media about her experiences caring for her aging husband. Larry, 87, a retired accountant and WWII veteran, is her husband of 26 years. Larry has suffered bouts with heart failure, Bell’s palsy, COPD and short-term memory loss.

Read the interview at the Good Men Project.

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Terminally ill opt for less treatment when in communication with doctors

Cancer patients who talk with their physicians about how they want to die are less likely to opt for aggressive end of life treatments in the last two weeks of life, according to a new study published in the Journal of Clinical Oncology. Instead, these patients end life more comfortably at home or in hospice care, and as a result spend much less on hospital care.

“Aggressive care at the end of life for individual patients isn’t necessarily bad, it’s just that most patients who recognize they’re dying don’t want to receive that kind of care,” said Dr. Jennifer Mack, lead author of “Associations Between End-of-Life Discussion Characteristics and Care Received Near Death: A Prospective Cohort Study.”

“We should at least consider having these discussions soon after diagnosis if we know that a patient has incurable cancer,” Mack, from the Dana-Farber Cancer Institute in Boston, told Reuters Health.

The researchers studied more than 1,200 patients with stage IV lung or colorectal cancer who survived at least one month from the time of diagnosis, but died during the 15-month study period. Using interviews of the patients and/or their caregivers and a comprehensive medical record review, the researchers determined if and when the patients had discussions with their doctors about end of life.

Researchers found that 88 percent had end of life discussions, but more than one-third of those took place less than a month before the patient died. Those patients who had end of life discussions documented in the medical record but did not recall them in the patient or surrogate interviews were more likely to have chemotherapy within the last 14 days of life, or acute intensive or hospital care within the last 30 days of life.

Patients who reported having the discussions with doctors were almost seven times more likely to end up in hospice than those who didn’t have those talks. Hospice focuses on comfort care and pain management for terminal patients, instead of treatment.

“A lot of patients don’t want (aggressive treatment), but they don’t recognize that they’re dying or that this is relevant for them,” said Dr. Camilla Zimmermann, head of the palliative care program at University Health Network in Toronto. She wasn’t involved in the study.

She told Reuters: “The earlier you discuss these things, the more options you have. If you wait too long, you end up having these discussions with someone you don’t know, that you just met, in an inpatient setting,” instead of with your primary doctor.

According to Mack, ”If we start these conversations early, then patients have some time to process this information, to think about what’s important to them (and) to talk with their families about that.”

In 2010, Medicare paid $55 billion for doctor and hospital bills during the last two months of patients’ lives- more than the budget for the Department of Homeland Security, according to CBS News. Twenty to 30 percent of those medical expenses may have had no meaningful impact on the patients’ health.

Reuters is reporting data from the Dartmouth Atlas of Health Care, which found that 32 percent of total Medicare spending goes to caring for sick patients in their last two years of life.

National guidelines recommend patient-physician talks begin soon after a terminal cancer diagnosis. Researchers found that physicians initiated end of life discussions an average 33 days before death.

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Feeding tubes: Families struggle with the decision

“The Quality of Life”: The end of life played out on stage

Feeding tubes: Families struggle with the decision

Source: Brown University, Joan Teno

Many families caring for seniors with advanced neurological disease face this dilemma: prolong their loved one’s life by artificial means via a feeding tube or stop feeding them altogether. Lisa Krieger’s new feature for Mercury News focuses on the billion-dollar feeding tube business and why some families regret their decision to opt for artificial nutrition.

One-third of nursing home residents suffering from dementia receive tube feedings, contributing to the $1.64 billion industry. However, some families and physicians insist the value of feeding tubes is overrated, since they provide little medical benefit and increase pain for those suffering from progressive neurological disease.

Source: mercurynews.com

“The number of nursing home residents with advanced dementia who get feeding tubes each year varies widely across states,” Krieger reports. The only comprehensive study on the matter found the average rate of use nationwide was 54 per 1,000 people.

Racial minorities are also more likely to opt for artificial tubes than whites. Life Matters Media previously reported that blacks are twice as likely than others to choose aggressive end of life treatments.

As medical costs continue to rise and the baby boomer population ages, views on artificial nutrition may be changing. “Decades after the tube achieved widespread use for people with irreversible dementia, some families are beginning to say no to them, as emerging research shows that artificial feeding prolongs, complicates and isolates dying,” Krieger writes.

For example, a 1999 study by Dr. Thomas Finucane of Johns Hopkins Medical Center found no evidence that feeding tubes prolong the lives of demented nursing home patients. They also didn’t prevent pneumonia or improve comfort.

Finucane’s analysis asserts: “We found no data to suggest that tube feeding improves any of these clinically important outcomes and some data to suggest that it does not… risks are substantial. The widespread practice of tube feeding should be carefully reconsidered…”

Most families, however, are accustomed to caring for their sick by feeding them, a reason why the decision to opt for or against artificial nutrition is especially emotional. “Food is how we comfort those we love; when all other forms of communication have vanished, feeding remains a final act of devotion,” Krieger writes.

Sometimes a terminally ill individual may not feel pain when a feeding tube is first inserted in the stomach. As the illness progresses and pain begins to get more intense, removing the tube becomes a moral debate. This quandary often comes as another surprise for families.

“It is amazing how long you can keep someone alive,” said Dr. Leslie Foote, medical director of Windsor Gardens Rehabilitation Center in California. “But we sure aren’t doing them any great favors.”

Despite some change in public opinion, families may not have the choice to reject feeding tubes. The fallout from the controversial 2005 Terri Schiavo case led the Catholic Church to order doctors at its hospitals to ignore patients’ advanced directives- even if they do not want artificial feeding. Catholic hospitals may mandate artificial nourishment.

In 2009, the U.S. Conference of Catholic Bishops issued the directive to more than 1,000 Catholic hospitals and nursing homes, as well as to all Catholic doctors.

“People with end stage dementia still possess human dignity. And that dignity must be respected,” said Vice- President of Corporate Ethics at Catholic Daughters of Charity Health System Gerald Coleman. Krieger insists that tube feeding constitutes ordinary care at Catholic hospitals.

Learn more about feeding tubes at WebMD.

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