Category: Healing and Helping Professionals

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When are you officially dead? Well, that may depend on which hospital is making the call

By Sarah Kaplan

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The narrow, inscrutable zone between undeniably still here and unequivocally gone includes a range of states that look like life but may not be: a beating heart, a functioning digestive system, even moving fingers and toes. Death is less a moment then a process, a gradual drift out of existence as essential functions switch off, be it rapidly or one by one.

It was exactly midnight when Colleen Burns was wheeled into the operating room at St. Joseph’s Hospital Health Center in Syracuse, N.Y. She had been deep in a coma for several days after overdosing on a toxic cocktail of drugs. Scans of electrical activity in her brain were poor, and oxygen didn’t seem to be flowing. Burns was brain dead, her family was told; if they wanted to donate her organs, now was the time to do it.

But there, under the bright lights of the prep room in the OR, Burns opened her eyes. The 41-year-old wasn’t brain dead. She wasn’t even unconscious anymore. And doctors had been minutes away from cutting into her to remove her organs.

This is the nightmare scenario, the one that sends doctors and neurologists into cold sweats. It’s the reason that, in 2010, the American Academy of Neurology issued new guidelines for hospitals for determining brain death – the condition that legally demarcates life from whatever lies beyond. Those standards, according to Yale University neurologist David Greer, who worked on them, are meant to ensure that no patient is declared dead unless they really are beyond all hope of recovery.

“This is truly one of those matters of life and death, and we want to make sure this is done right every single time,” he told NPR.

But five years later, according to a study led by Greer that was published in the journal JAMA Neurology Monday, not all hospitals have adopted the guidelines.

Of the nearly 500 hospitals Greer and his colleagues surveyed over a three year period, most facilities did not require that someone with expertise in neurology or neurosurgery be present to determine brain death. At more than half of hospitals, the person who makes the call doesn’t even have to be the patient’s attending physician. A majority also didn’t require doctors to test for hypotension (abnormally low blood pressure) or hypothermia, both of which can suppress brain function which could mimic the appearance of brain death.

There were large improvements in standardization of brain death assessments across hospitals since the 2010 criteria were published. The survey also looked at standards, not practices.

But the lingering lapses are still worrying, Greer told NPR.

“There are very few things in medicine that should be black and white, but this is certainly one of them,” he said. “There really are no excuses at this point for hospitals not to be able to do this 100 percent of the time.”

Burns’s near-disastrous declaration of death happened in 2009, before the new guidelines were released, though a U.S. Department of Health and Human Services report on the incident found that St. Joseph’s had failed to meet previous standards for assessing death. Hospital staff missed several signs that Burns’s brain was still functioning the night she was due for organ donation surgery: her nostrils flared, her lips and tongue moved, she was breathing “above the ventilator” (meaning, taking breaths of her own accord). And when a nurse performed a reflex test, scraping a finger along the bottom of Burns’s foot, the woman’s toes curled inward, according to the Syracuse Post-Standard.

Doctors failed to order repeat CT scans and inexplicably and inaccurately said that she suffered from cardiac arrest when she hadn’t. Crucially, they also failed to measure whether the drugs she had taken still lingered in her system, preventing her from exhibiting even the most primitive reflexes expected of someone with brain activity.

This is a widespread problem, Greer’s report indicates: only about 32 percent of hospitals surveyed required drug tests to rule out toxic levels that can mimic the loss of primitive reflexes associated with brain death.

As soon as Burns opened her eyes, she was rushed back into the ICU and her doctors resumed treatment. She ultimately recovered from her overdose and was discharged two weeks later. But 16 months after the near-miss in the OR Burns committed suicide, her mother told the Post-Standard.

Burns’s mother, Lucille Kuss, said that depression, not what happened at the hospital, is what drove Burns to her death.

“She was so depressed that it really didn’t make any difference to her,” Kuss said of the incident.

Cases like Burns’s are increasingly rare, but they are emblematic of an anxiety at the root of all discussions about brain death. If death is a process, at what point in the process is the person no longer alive?

For most of history, this question was mostly moot. In the Victorian era, for example, doctors couldn’t keep blood pumping through a permanently unresponsive person’s body, even if they wanted to, and a person who lost brain function would surely quit breathing shortly after. Determining the exact point of death was less a medical necessity than a philosophical diversion: In the early 1900s, Boston doctor Duncan MacDougall recruited a number of terminally ill patients to lie down on a massive scale during their final moments. By measuring fluctuations in their weight at the moment they died, MacDougall claimed, he could determine the mass of the soul.

The advent of organ donation procedures in the 1960s changed that. That period of collapse as functions failed became not only a tragic inevitability, but a vital window when organs could be taken from a dead body and used to keep another alive. Yet defining that window is medically and ethically complicated. Open it too early, as Burns’s doctors almost did, and you risk sacrificing a patient who might have survived. Too late, and the organs will deteriorate along with the life they once sustained.

This is how we arrived at a definition of death as brain death, the complete and irreversible loss of brain function, including in the brain stem (which controls the heart and lungs). It comes largely from a 1968 definition written for the The Journal of the American Medical Association by an ad hoc Harvard Medical School committee, and then affirmed by a blue ribbon medical commission just over a decade later. A person can also be declared dead if they suffer an irreversible cessation of respiratory and circulatory functions – in other words, their heart and lungs permanently stop.

Some critics of brain death as a barometer for organ donation worry that it might encourage doctors to give up on their patients too soon.

Of course, the extraction of organs from a failing body is not the only reason to come up with a legal definition of death. It also helps hospitals to determine when and how to end life-saving interventions and remove a patient from life support.

The logic behind marking brain death as the end of life is that existence without a brain isn’t living.

“The brain is the person, the evolved person, not the machine person,” Cornell University neurologist Fred Plum said at a symposium on comas and death in 2000, according to the New Yorker. “. . . We are not one living cell. We are the evolution of a very large group of systems into the awareness of self and the environment.”

The brain is the person, the evolved person, not the machine person

But not everyone agrees. Cultural and legal definitions of life and death vary – in an interview with NPR, Georgetown University medical ethics professor Robert Veatch called defining death “the abortion question at the other end of life.”

Right now, the family of Jahi McMath, a California teenager who was declared brain dead two years ago but has been kept on life support, is suing to have her death certificate invalidated according to the Associated Press. The McMaths are devout Christians, their lawyer wrote in a brief, who believe that “as long as the heart is beating, Jahi is alive.”

McMath is currently on a ventilator in New Jersey, where state law allows hospitals to take a family’s religion into consideration when making decisions about end-of-life procedures.

Yet despite the legal, medical and moral complexities in determining brain death, there is no federally mandated procedure for doing so, according to the New York Times. There are only the guidelines issued by neurologists, and how hospitals choose to apply them.

That they do so inconsistently only exacerbates the anxieties people have about death and organ donation, Leslie Whetstine, a bioethicist at Walsh University in Ohio, told NPR.

“If one hospital is using a testing method that’s different from another hospital,” she said, “people might wonder: ‘Are they really dead?’”

Complete Article HERE!

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Prison hospice program blesses both the living and dying

BY PATRICIA GANNON

Hospice of Acadiana, whose volunteers include, from left, Martie Beard, Lyle Ann Hernandez, Ann Wallace, Lewis Bernard and Charlene Miller, annually visit state prisons to support inmates administering end-of-life caregiving to fellow prisoners.
Hospice of Acadiana, whose volunteers include, from left, Martie Beard, Lyle Ann Hernandez, Ann Wallace, Lewis Bernard and Charlene Miller, annually visit state prisons to support inmates administering end-of-life caregiving to fellow prisoners.

According to Luke 23:42, a thief crucified alongside Jesus said to him, “Remember me when you come into your kingdom” to which Jesus replied, “Amen, I say to you today you will be with me in Paradise.”

Hospice of Acadiana takes the verse to heart and annually sends volunteers to support inmates administering end-of-life caregiving to fellow prisoners.

Volunteers bring bags of supplies to their prison hospice counterparts, inmates taking on death watches in addition to other prison duties.

The bags are handmade by a Lafayette woman and contain a blanket, candy, snacks, socks and toiletries, all supplied by the volunteers themselves or by donation. The blanket doubles as a prayer shawl and comes with the blessing, “Know that even in the middle of the darkest night you are not alone.”

“We do continuing education, but we leave with more than we bring,” said Ann Wallace, Hospice of Acadiana volunteer director.

The volunteers mostly talk about hope.

“We try to talk about topics to help them be better volunteers,” she said. “It’s a very special program and they (inmates) have to apply. It’s an esteemed position.”

While Louisiana State Penitentiary at Angola has the first and oldest prison hospice program in the state, the volunteer group also serves Dixon Correctional Institute in Jackson and Elayn Hunt Correctional Center and Louisiana Correctional Institute for Women, both in St. Gabriel.

There also is a hospice program at the B.B. “Sixty” Rayburn Correctional Center in Washington Parish, near Angie.

Started in 1997 by directive of Warden Burl Cain, who recently announced his retirement, Angola trained 40 inmates in issues that affect end of life and how to take care of fellow prisoners.

Hospice of Acadiana mentors from the outside.

“We talk about the four most important things,” said Lewis Bernard, a volunteer for 15 years. “I’m sorry, I love you, thank you, and I forgive you. We start with that.”

Volunteers from Hospice of Acadiana assist inmates in practicing basic care, helping the terminally ill to die comfortably and making sure inmates don’t die alone. They offer advice in all the aspects of social, emotional and physical care, including bereavement, spirituality and reconciliation with family.

Anywhere from 10 to 20 volunteers are mustered for the yearly visit in December.

“We put an email out that we’re going to the prison and ask who wants to come,” said Wallace.

“No one really knows until you experience it,” she said. “My Bible study group didn’t even understand.”

Whether they’re serving 10 to 20 years or life, the reality is terminally ill prisoners are not transferred out to die, and if family doesn’t claim them, they are buried on site in coffins made by prisoners.

“I remember one inmate saying, ‘I know I’m like a broken car, they’re going to fix me and I’ll run better,” said Bernard. “At St. Gabriel and Dixon, there’s hope.”

He said that’s not the case at Angola. “They (prison hospice volunteers) see their work as more of a ministry,” said Bernard, “You can’t be a wimp and do that work. They become the nurses. At the moment they die, nothing’s left but their relationship with God. They’ve been stripped of everything else.”

“It’s the way all hospice should work,” said Jamie Boudreaux, executive director of the Louisiana and Mississippi Palliative Care Association. “They are caring for their fellow inmates in a most remarkable way. For 24 hours they don’t leave their side. It’s one of the most incredible programs in the country. We have correctional officers who come to Angola to see it.”

Prisons in Louisiana have a particularly bloody aspect to their history, said Boudreaux.

“Angola is still a maximum security facility,” he said, “but there is a new level of cooperation between inmates and guards.”

According to Boudreaux, prisoners themselves notice a difference, a newfound dignity.

“It truly is the most transformative story I have seen in my lifetime,” he said.

The Angola hospice program is documented in “Serving Life,” a film narrated and produced by Academy Award-winner Forest Whitaker.

The film takes viewers inside Angola, where the average sentence is more than 90 years. With prison sentences so long, 85 percent of the inmates will never live on the outside again.

Charlene Miller, a 23-year volunteer, explained that before hospice, prisoners died in their cells or the infirmary.

“It’s something to see those big, burly men soothe the dying and pray with them,” she said. “It makes me feel good. I love it. It’s a privilege to be in on the last moments of their lives.”

Complete Article HERE!

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2015 is the year America started having a sane conversation about death

The American health care debate used to get bogged down in fights over rationing and “pulling the plug on grandma.” Not anymore.

by Sarah Kliff

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Earl Blumenauer had become accustomed to losing.

During the health reform debate, the Oregon congressman pushed a provision that would reimburse doctors for helping Medicare patients draw up advance care directives.

Blumenauer’s proposal quickly became the most politically toxic section of a law rife with contested projects and programs. It’s the part of Obamacare that Sarah Palin termed “death panels.” In August 2009, amidst ugly skirmishes at angry town halls, legislators relented. They left the end-of-life planning provision on the cutting-room floor.

“It was very difficult, in part because of the lingering death panel cloud”

But Blumenauer was undeterred. He quickly began lobbying the Obama administration to create the advance care benefit through regulations that Congress wouldn’t have to approve.

“It was very difficult, in part because of the lingering death panel cloud,” Blumenauer told me in a recent interview.

blumenauer card
The pocket card Rep. Blumenauer would hand out to White House officials.

Since 2009, Blumenauer has doggedly — and unsuccessfully — badgered any Obama administration member who might listen to his cause. But the White House, for five years, wouldn’t budge. Every year, it would put out the list of services Medicare would reimburse. And every year, advance care planning would not be on it.

Blumenauer recalled once attending a picnic at the White House — and pestering administration officials to take small cards he’d had printed up to summarize his case.

“At this year’s White House picnic, around the Fourth of July, there was some indications it could go our way,” he says.

On November 2, Blumenauer finally won: The White House finalized rules that will allow doctors to be paid for every discussion they have with patients about creating an advance directive.

The United States has — quietly and with little fanfare — begun to do something quite remarkable. We’ve started to have a more sane conversation about death, something that just this spring, as I wrote in a lengthy essay, seemed near impossible. That has allowed for significant policy changes that will, starting in 2016, begin to revamp the way Americans plan for the inevitable.

I’ve spent much of the past month asking legislators, doctors, government officials, and advocates about how that happened. They say health care became a much less heated topic. Doctors and patients, meanwhile, began to take a bigger leadership role. And the White House, cognizant of Obama nearing the end of its term, appeared to see a last moment for action — and decided to seize it.

“As a country, we’re more willing to have a conversation around the end of life,” says Kim Callinan, chief program officer for the end-of-life advocacy group Compassion and Choices.

Medicare spends billions on end-of-life care. But patients aren’t getting the care they want.

Fierce protests over end-of-life care broke out at 2009 congressional town hall meetings.
Fierce protests over end-of-life care broke out at 2009 congressional town hall meetings.

Dying in America is expensive. The 6 percent of Medicare patients who die each year typically account for 27 to 30 percent of the program’s annual health care spending. Medicare spent an average of $33,500 for beneficiaries who died in 2011 — four times the amount it spent on the seniors who lived.

Health care providers often make heroic efforts to save patients’ lives in their final days and weeks. The average Medicare patient who dies from cancer spends 5.1 days of his or her last month of life in the hospital. A quarter of these cancer patients are admitted to the intensive care unit over the same time period.

But surveys of patients with terminal disease suggest this isn’t what they actually want. One survey of 126 patients facing near death found they had five priorities at the end of life — and prolonging life was not actually among them.

Patients told researchers they wanted their pain controlled, a sense of control over their care, their burdens relieved, and time to strengthen relationships with loved ones. They also specifically did not want the “inappropriate prolongation of dying.”

A 2012 paper found that cancer patients who have less intensive care at the end of life — who have fewer hospitalizations and intensive care unit visits in their last week of life — report the best quality of life at the time of death.

In Washington, something so costly that leads to worse patient outcomes would be, in other public health programs, a no-brainer. But with end-of-life care, the opposite tends to be true: We can’t talk about the cost of dying because it sounds like a discussion about rationing. Taking cost into account feels callous and inappropriate in the context of death. For years now, that’s made end-of-life care an unapproachable topic on Capitol Hill.

That the already-polarizing health reform law included policy changes for end-of-life care certainly did not help matters.

“This was toxic for a while because of the gross mischaracterization of what we wanted to do,” says Sen. Mark Warner (D-VA), who has worked on end-of-life care legislation.

Warner, like many other legislators who work on the issue, had his own personal story of attempting to care a loved one — in his case, his mother, as her Alzheimer’s worsened.

“I was someone who was relatively informed; I was the governor of Virginia,” he says. “We knew something was coming, but we never had the conversation within our family that we needed to. This is an issue that has touched every family, and touched all the ups and downs of the health care debate.”

How 2015 changed the way America talks about death

white house

The first two attempts to pay doctors to talk about death started in Washington. And both were abject failures.

The first attempt touched off the “death panel” outcry during the summer of 2009.

The second came in the winter of 2010, when the Obama administration tried quietly slipping the new benefit into regulations that outline how much Medicare doctors get paid for various procedures. That approach seemed to work — until an eagle-eyed New York Times reporter noticed the regulatory bombshell and wrote a story for the paper’s front page. Within days, the Obama administration retreated.

“We were, to put it mildly, disappointed when the administration changed course at the end of 2010,” says Blumenauer. “Any poor soul who happened to be the secretary of Health and Human Services or high ranking at the Center for Medicare Services has heard from me about it.”

Any federal proposal to change the way Americans die was met with immediate skepticism and framed as a government takeover of health care.

This last successful attempt didn’t start in the White House. It didn’t even begin in Washington. It began far outside the Beltway, at the 2012 meeting of the Illinois State Medical Society.

That’s where two doctors from the DuPage Medical Society — which covers the county just west of Chicago — brought to the floor a resolution to ask the American Medical Society to create a billing code for advance care planning discussions. Somewhat confusingly, the AMA creates all the billing codes that Medicare uses, while the government decides how much to pay for each code.

“This was the voice of doctors saying, ‘We want this,'” says Scott Cooper, executive director of the Illinois Medical Society. “Because it came from physicians and was based on clinical experience, and not some policy wonk who had some idea in Washington. It’s an easier sell when you have the voice of the medical community.”

The resolution passed — and a handful of Illinois State Medical Society members flew to an AMA meeting in 2013 to deliver their request in person. They were successful, and the AMA created two codes.

“It’s not every day you just create a new procedure for Medicare,” says Cooper. “We’d never done it before. But this was relatively seamless and easy. It didn’t face any pushback.”

After that 2013 meeting, the billing codes existed — but Medicare never attached any money to them. If a doctor had tried to bill for an end-of-life planning discussion, no reimbursement would show up. Advocates pushed delicately on the issue, knowing that Medicare was a massive agency they had to work with on countless other issues.

“It’s not every day you just create a new procedure for Medicare”

“You don’t want to be put in this awkward position of pushing too hard against an administration or executive branch that has largely been doing many positive things,” says Peter Hollmann, a board member of the American Geriatric Society and a practicing physician in Rhode Island.

Medicare sat on the codes for two years. But in early 2015, rumors started to ripple through Washington’s health policy circles: This would be the year that Medicare started paying for end-of-life discussions.

The timing made sense: This was, arguably, the last moment the Obama administration had to create the benefit. If the administration waited until 2016, it would be making the change mere days before the presidential election — a risky time for any policy change. Late 2015 appeared to be the Obama administration’s last shot.

“People felt this was the last chance to do this,” Hollmann says. “No one knows what can happen in an election year, with the potential for shenanigans.”

On July 8, Medicare published draft plans to pay doctors to talk about death (about $80 for the first 30 minutes, and another $75 for an additional half-hour). The agency invited comments, which came back near universally positive.

“I am a healthcare professional in palliative care and advance care planning is critical to patients and their loved ones,” one doctor from California wrote in.

“Patients and families deserve to have realistic information provided by their doctors, rather than relying on their assumptions often fed by the popular media about what ‘life support’ and ‘rehabilitation’ can actually look like,” another in Oregon commented.

“Please add the codes below,” another Tennessee doctor requested, “so end-of-life suffering can be minimized.”

There was no outcry, and no doctors objecting to the new Medicare benefit. On October 30, Medicare made the decision official: Beginning in January 2016, it would pay doctors to talk about death.

“It’s a terrible, terrible way to die”

Brittany Maynard on her wedding day.
Brittany Maynard on her wedding day.

Much like in Washington, bills that changed end-of-life policy never had much luck in California before.

Advocates there, however, wanted to go much further: They had pushed legislation that would allow doctors to prescribe lethal medication to terminally ill patients — in other words, physician-assisted suicide.

But efforts failed in 2005 and 2007, as the California legislature rejected the proposal. Only small, decidedly liberal states like Vermont and Oregon seemed willing to pass those laws.

That all changed with Brittany Maynard, a 29-year-old who died in late 2014 from a rare brain cancer called glioblastoma multiforme. It’s a fatal disease that typically causes massive cognitive decline in the last months of lives. Patients can become unable to remember their own last names or to distinguish between a trash can and a toilet.

“My glioblastoma is going to kill me, and that’s out of my control,” Maynard told Peopleat the time. “I’ve discussed with many experts how I would die from it, and it’s a terrible, terrible way to die.”

Maynard looked at that future and made a firm decision against. She moved to neighboring Oregon, which allows doctors to prescribe lethal medications to terminally ill patients like her. Maynard used that law to take her own life on October 30, 2014.

Before her death, Maynard also recorded a series of videos imploring California’s legislature to pass a similar law — which would allow other Californians to choose the same death without moving hundreds of miles north. She recorded testimony that was presented to the legislature in March 2015 — five months after her death.

 

“Brittany helped normalize the discussion around end-of-life care,” says Kim Callinan of Compassion and Choices. “Here was this beautiful 29-year-old woman whom we could really relate to. Her coming forward helped transform the conversation that was taking place already, and raised the issue’s visibility.”

Compassion and Changes ran its largest-ever campaign for a state bill, putting a half-dozen organizers on the ground throughout the state. It had a watershed moment when the California Medical Association, which had opposed previous aid-in-dying bills, agreed not to take a stance on the new legislation.

Maynard’s illness caused the group to “start taking a look at our historical positions,” California Medical Association spokesperson Molly Weedn told me over email. “The decision was made to remove any policy that we had on the books that outright opposed aid in dying. We wanted to ensure that it was a decision made between a physician and their patient and determined around individual instances.

On October 5 — 340 days after Maynard’s death — California Gov. Jerry Brown signed Assembly Bill 12 into law. In one fell swoop, Brown tripled the number of Americans who live in states where doctors can prescribe lethal medications to patients whom they expect to live six or fewer months. In his signing statement, he cited the letters he’d read from Brittany Maynard’s family.

“I do not know what I would do if I were dying in prolonged and excruciating pain,” Brown wrote. “I am certain, however, that it would be a comfort to be able to consider the options afforded by that bill. And I won’t deny that right to others.”

A saner approach to death in 2016?

In some ways, the 2015 changes to end-of-life policy in America were large. Medicare didn’t pay doctors to talk about death. Now it does. This year, 13.7 million people live in places where it’s legal for physicians to help terminally ill patients end their lives. Next year, that number will jump to 52.2 million people.

But in other ways, these changes are still quite small. Data from Oregon suggests that the number of people who use the California law, for example, will be relatively small. And advocates for end-of-life care planning see much work to do when it comes to ensuring that Americans’ preferences for care at the end of life are met.

Lee Goldberg directs Pew Charitable Trusts’ improving end-of-life care project, and he sees the new Medicare benefit as a first step rather than an end goal. There’s work to be done to ensure that doctors are equipped to have these conversations — and that patient preferences that do get recorded are easily accessible when patients have emergency situations.

“The odds are no better than chance right now, so that’s a big challenge, making sure this patient data is available when it’s needed,” he says.

Goldberg and others see 2015 as something akin to a proof of concept: proof that the American political system and state governments can pursue changes to end-of-life care policy without getting shouted down about death panels and rationing. This doesn’t guarantee future change but at least allows for the possibility. Because in 2015, it wasn’t impossible for Blumenauer to get the administration to pay attention to his pocket cards.

“It does wear you down sometimes,” he says of sticking with the issue for so long and seeing so little progress until now. “How many times do you answer the same questions on something that seems so compelling, and every year have the answer be no? But every year the case became stronger, and that’s more difficult to say no to.”

Complete Article HERE!

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Palliative and End of Life Care

By Ellen Fink-Samnick

Palliative and End of Life Care

We all know the cost of care at the end of life (EOL) tends to be needlessly wasteful. And we know that, too often, the wishes of patients are ignored, or worse, unknown. As the healthcare system adopts a patient-centered approach, it is important we ask every dying patient and their family what they want. When we do, we find that most would say they want less care and more quality of life in their final days. This is especially pressing today for three reasons

1. There is heightened emphasis on palliative and EOL care, in part, because of Institute of Medicine’s report last year, Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life1. In it, experts on death and dying made bold recommendations about how hospitals and healthcare professionals should address palliative and EOL care.

2. Officials from the federal Centers for Medicare & Medicaid Services, Baltimore, said, in July, it would pay physicians to conduct EOL counseling and start a pilot project to pay for hospice care and treatment instead of one or the other. At the end of the four-year project, CMS will evaluate whether it’s better to continue the current form of reimbursement or pay for both.

In this new program, 150,000 dying patients on Medicare will be allowed to choose hospice care to manage pain and suffering, get EOL counseling and medical treatments – including hospitalization – to help them battle illnesses, according to The New York Times2. Research shows that patients, who get palliative care and traditional medical care, have better quality of life and less intense medical care, resulting in lower costs, the newspaper reported.

It’s likely that CMS officials know that providing appropriate care for dying Medicare patients could control some of the steep EOL costs when the healthcare system does what it normally does: provide heroic measures to keep patients alive whether they want or need that.

In a study published in Health Affairs3, researchers at the Brookdale Department of Geriatrics and Palliative Medicine at Mount Sinai, New York, showed considerable savings when patients with terminal illness are enrolled early in palliative and EOL care programs.

If 1,000 Medicare beneficiaries are enrolled in hospice within 15 to 30 days before death, CMS could save more than $6.4 million and those patients would be spared 4,100 hospital days. If 1,000 dying Medicare patients enrolled in hospice within 53 to 105 days before death, the savings would be more than $2.5 million, adds the study.

3. Brittany Maynard put the importance of end of life care into the news last year. The 29-year-old newly married teacher and resident of California became interested in assisted suicide after her diagnosis with terminal brain cancer in 2013. Under California law, this option wasn’t available. So, she and her husband rented a home in Oregon, which allows assisted suicide. A year later, at least 13 states are pursuing what is called “death with dignity” legislation. Oregon, only Montana, New Mexico, Vermont, and Washington State currently have such laws.

Given these significant developments, it may be more important than ever for healthcare professionals to ask what patients want in terms of palliative and EOL care. When we fail to ask, we are, by definition, no longer providing patient-centered care. Instead, we’re doing what the healthcare system has always done: provide lots of care whether it meets patient needs or not and wasting precious resources in the process.

Fixing this problem shouldn’t be that difficult. We simply need to make sure we’re delivering patient-centered care. To do that, we need to ensure the patient and family are fully engaged in care delivery. But, as we have seen in the past, members of the care team may not be prepared to talk about death and dying. After all, most went to school to learn to care for the living and keep them alive.

Has the care team talked with the patient about what he or she wants? If there was such a conversation, was the family included? Did the care team discuss what the patient wants without the patient being present?

The patient-engagement step is easy to overlook. Healthcare providers, not trained to talk about death and dying, don’t know how to do it; or believe it’s someone else’s job. So, the first step is to ensure that someone lets the hospital or health system know what the patient wants. In many facilities, this falls to the case manager or social worker who ensures the patient gets what he or she needs from the health system.

James McGregor, MD, an expert in palliative and end of life care and senior medical director for Sutter Health, Sacramento, Calif., says, “Addressing the full spectrum of psychosocial, emotional, physical and spiritual needs helps to raise patient and family satisfaction and prolong life. Patients and family members often have questions about palliative and EOL care and need someone to answer them.”

Those who work in palliative and EOL know the value of engaging patients and their families to guide them through these difficult times, explaining an illness and planning. And, they are likely to create a more sustainable healthcare system.

Complete Article HERE!

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What working in a nursing home taught me about life, death, and America’s cultural values

by Valery Hazanov

nursing home

 

The first thing I noticed when I began working in a nursing home was the smell. It’s everywhere. A mix of detergent and hospital smell and, well, people in nursing homes wear diapers. It’s one of those smells that takes over everything — if you’re not used to it, it’s hard to think about anything else.

Being in the nursing home is tough. People weep and smell and drool. Sometimes you can go on the floor and hear a woman in her 90s scream, “I want Mommy.”

But it’s also ordinary — just people living together: gossiping, daydreaming, reading, watching TV, scratching their back when it itches.

People at the nursing home like to watch TV. It’s always on. How strange, then, that there are no old people on TV.

For the past eight months I have been working as a psychotherapist with dying patients in nursing homes in New York City. It’s an unusual job for a psychotherapist — and the first one I took after graduating with a PhD in clinical psychology. My colleagues were surprised. “Why not a hospital? Or an outpatient clinic? Do the patients even have a psychiatric diagnosis?”

The short answer is that I wanted to see what death looks and feels like — to learn from it. I hope that I can also help someone feel a little less lonely, a little more (is there a measure to it?) reconciled.

I haven’t gotten used to the smell yet. But I have been thinking a lot about the nursing home and the people who live and die there, and wanted to share what I learned.

1) At the end, only the important things remain

“This is all I have left,” a patient recently told me, pointing to a photograph of himself and his wife.

It made me notice the things people bring to the nursing home. The rooms are usually small, so what people bring is important to them. If they have a family, there will be photos of them (most popular are the photos of grandchildren). There might also be a few cherished books, a get-well-soon card, a painting by a grandchild or a nephew, some clothes, maybe flowers. And that’s about it. The world shrinks in the nursing home, and only a few things remain: things that feel important — like they’re worth fighting for, while we still can.

2) Having a routine is key to happiness

‘m a little lazy. My ideal vacation is doing nothing, maybe on a deserted beach somewhere. I look in terror upon very scheduled, very planned people. Yet I have been noticing that doing nothing rarely fills me with joy, while doing something sometimes does. Hence, the conflict: Should I push myself to do things, or should I go with the flow and do things only when I feel like doing them? Being in a nursing home changed my perspective somewhat: I noticed that all the patients who do well follow a routine. Their routines are different but always involve some structure and internal discipline.

I am working with a 94-year-old woman. She wakes up at 6:30 am every day, makes her bed, goes for a stroll with a walker, eats breakfast, exercises in the “rehabilitation room,” reads, eats lunch, naps, goes for another walk, drinks tea with a friend, eats dinner, and goes to bed. She has a well-defined routine. She pushes herself to do things, some of which are very difficult for her, without asking herself why it is important to do them. And, I think, this is what keeps her alive — her movement, her pushing, is her life.

Observing her, I have been coming to the conclusion that it might be true for all of us. And I often think about her when I am debating whether to go for a run or not, whether to write for a couple more hours or not, whether to finally get up from the couch and clean my apartment or not — she would do it, I know, so maybe I should, too.

3) Old people have the same range of emotions as everyone else

“You are so handsome. Are you married?” is something I hear only in extended-family gatherings and in nursing homes. People flirt with me there all the time. This has nothing to do with their age or health — but rather with whether they are shy. When we see someone who is in his 90s and is all bent and wrinkled and sits in a wheelchair, we might think he doesn’t feel anything except physical pain — especially not any sexual urges. That’s not true.

As long as people live, they feel everything. They feel lust and regret and sadness and joy. And denying that, because of our own discomfort, is one of the worst things we can do to old people.

Patients in nursing home gossip (“Did you know that this nurse is married to the social worker?”), flirt, make jokes, cry, feel helpless, complain of boredom. “What does someone in her 80s talk about?” a colleague asked me. “About the same things,” I replied, “only with more urgency.”

Some people don’t get that, and talk to old people as if they were children. “How are we today, Mr. Goldstein?” I heard someone ask in a high-pitched voice of a former history professor in his 80s, and then without waiting for a response added, “Did we poopie this morning?” Yes, we did poopie this morning. But we also remembered a funny story from last night and thought about death and about our grandchildren and about whether we could sleep with you because your neck looks nice.

4) Old people are invisible in American culture

People at the nursing home like to watch TV. It’s always on. How strange, then, that there are no old people on TV.

Here’s a picture I see every day: It’s the middle of the day and there is a cooking show or a talk show on, and the host is in her 50s, let’s say, but obviously looks much younger, and her guest is in his 30s or 50s and also looks younger, and they talk in this hyper-enthusiastic voice about how “great!” their dish or their new movie is, or how “sad!” the story they just heard was. Watching them is a room full of pensive people in their 80s and 90s who are not quite sure what all the fuss is about. They don’t see themselves there. They don’t belong there.

I live in Brooklyn, and I rarely see old people around. I rarely see them in Manhattan, either. When I entered the nursing home for the first time I remember thinking that it feels like a prison or a psychiatric institution: full of people who are outside of society, rarely seen on the street. In other cultures, old people are esteemed and valued, and you see them around. In this manic, death-denying culture we live in, there seems to be little place for a melancholic outlook from someone that doesn’t look “young!” and “great!” but might know something about life that we don’t.

There isn’t one Big Truth about life that the patients in the nursing home told me that I can report back; it’s a certain perspective, a combination of all the small things. Things like this, which a patient in her 80s told me while we were looking outside: “Valery, one day you will be my age, God willing, and you will sit here, where I sit now, and you will look out of the window, as I do now. And you want to do that without regret and envy; you want to just look out at the world outside and be okay with not being a part of it anymore.”

5) The only distraction from pain is spiritual

Some people in the nursing home talk about their physical pain all the time; others don’t. They talk about other things instead, and it’s rarely a sign of whether they are in pain or not.

Here’s my theory: If for most of your life you are concerned with the mundane (which, think about it, always involves personal comfort) then when you get old and feel a lot of pain, that’s going to be the only thing you’re going to think about. It’s like a muscle — you developed the mundane muscle and not the other one.

The saddest people I see in the nursing home are childless

And you can’t start developing the spiritual muscle when you’re old. If you didn’t reallycare about anything outside of yourself (like books, or sports, or your brother, or what is a moral life), you’re not going to start when you’re old and in terrible pain. Your terrible pain will be the only thing on your mind.

But if you have developed the spiritual muscle — not me, not my immediate comfort — you’ll be fine; it will work. I have a couple of patients in their 90s who really care about baseball — they worried whether the Mets were going to make the playoffs this year, so they rarely talked about anything else; or a patient who is concerned about the future of the Jewish diaspora and talks about it most of our sessions; or a patient who was worried that not going to a Thanksgiving dinner because of her anxieties about her “inappropriately old” appearance was actually a selfish act that was not fair to her sister. Concerns like these make physical pain more bearable, maybe because they make it less important.

6) If you don’t have kids, getting old is tough

The decision to have kids is personal, and consists of so many factors: financial, medical, moral, and so on. There are no rights or wrongs here, obviously. But when we are really old and drooling and wearing a diaper, and it’s physically unpleasant to look at our wounds or to smell us, the only people who might be there consistently, when we need them, are going to be either paid to do so (which is okay but not ideal) or our children. A dedicated nephew might come from time to time. An old friend will visit.

But chances are that our siblings will be very old by then, and our parents will be dead, which leaves only children to be there when we need it. Think about it when you are considering whether to have children. The saddest people I see in the nursing home are childless.

7) Think about how you want to die

José Arcadio Buendía in One Hundred Years of Solitude dies under a tree in his own backyard. That’s a pretty great death.

People die in different ways in the nursing home. Some with regrets; others in peace. Some cling to the last drops of life; others give way. Some planned their deaths and prepared for them — making their deaths meaningful, not random. A woman in her 90s recently told me, “Trees die standing tall.” This is how she wants to go: standing, not crawling.

I think of death as a tour guide to my life — “Look here; pay attention to this!” the guide tells me. Maybe not the most cheerful one, slightly overweight and irritated, but certainly one who knows a lot and can point to the important things while avoiding the popular, touristy stuff. He can tell me that if I want to die under a tree in my backyard, for example, it might make sense to live in a house with a backyard and a tree. To you, he will say that if you don’t want any extra procedures done to you at the end, it might make sense to talk about it with the people who will eventually make this decision. That if you want to die while hang-gliding over an ocean, then, who knows, maybe that’s also possible.

I think of death as a tour guide to my life — “Look here; pay attention to this!”

My father, who has spent the past 30 years working in an ICU as a cardiologist and has seen many deaths, once told me that if he had to choose, he would choose dying well over living well — the misery of a terrible, regretful death feels worse to him than a misery of a terrible life, but a peaceful death feels like the ultimate reward. I think I am beginning to see his point.

I am 33. Sometimes it feels like a lot — close to the end; sometimes, it doesn’t. Depends on the day, I guess. And like all of us, including the people in the nursing home, I am figuring things out, trying to do my best with the time I have. To not waste it.

Recently, I had a session with a woman in her 90s who has not been feeling well.

“It’s going in a very clear direction,” she told me. “Toward the end.”

“It’s true for all of us,” I replied.

“No, sweetheart. There is a big difference: You have much more time.”

Complete Article HERE!

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How to get what we need at the end of life

By Diane E. Meier

MY PATIENT – I’ll call her Mrs. Stein — had been crystal clear for the 12 years I took care of her. “I never want to end up in a nursing home — make sure you help me stay in my own home. I want to die in my own bed!”what we need at the end of life

A few years later, she had a stroke and her only option was a nursing home. She didn’t have enough money to pay out of pocket for 24-hour personal care at home, and neither Medicare nor Medicaid would cover it. Angry and depressed, she left for a neighborhood nursing home, where she lived another five years. I knew her wishes, but our society provided no means of honoring them.

In order to know what our patients prize most, we need to ask them, and then we must be able to act on what we learn. This requires three key elements.

First, we have to help clinicians and their patients get off the 10-minute office visit treadmill, by compensating providers for conducting meaningful conversations with patients about their priorities and treatment options. Recent government effort to provide payments to clinicians for having conversations about what matters most to our patients if they can no longer decide or care for themselves (referred to as advance care planning) is an important step in wrestling our health care system back to one that places patient needs and priorities first.

Second, these are not easy conversations to have. Clinicians are not born knowing how to have them, and just like our patients, we avoid discussions about uncomfortable topics. Meanwhile, talking about future medical priorities is not taught in medical schools. Until this kind of training is routine and universal, it does not matter whether or how much we pay for these conversations; clinicians will continue to avoid them. The good news is that a bill in Congress, the Palliative Care and Hospice Education and Training Act, addresses these issues.

But third, it is not enough to know what patients want. We must also be able to act on those wishes by covering the care and support people need in order to remain as independent as possible in their own homes. While the Care Choices Act represents some progress, as it allows people to get hospice care at home focused on comfort and quality of life at the same time as continued disease treatment, it does not cover the personal care and support. But there is hope here, too — the Affordable Care Act creates new incentives for our health systems to help us avoid unnecessary, risky, and costly hospitalization, incentives that will drive greater willingness on the part of both public and private insurers to meet people’s needs in their own homes. That’s a lot cheaper than having people end up in hospitals and nursing homes. It is also what most of us — including Mrs. Stein — would want.

 

Dr. Diane E. Meier is a palliative medicine physician and director of the Center To Advance Palliative Care at the Icahn School of Medicine at Mount Sinai in New York City.

Complete Article HERE!

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Families urged to discuss end-of-life plans in A Good Death film

BY

A Pangbourne GP has made a film about the experiences of a family dealing with the death of a loved-one to help others in the same situation

Judy
Judy, whose mother Molly died in June, helped Pangbourne GP Dr Barbara Barrie make a film about the experience

A tearful new film shows how one Berkshire daughter was able to ensure her mother could die at home and with minimum pain.

The film is called A Good Death and features a daughter Judy speaking of the death of her mother Molly who lived for many years in Pangbourne and died in June in her own home.

Health service commissioners in Berkshire West are now asking families to ask their loved ones about their wishes and not to be afraid to discuss end-of-life plans with their doctor.

Pangbourne GP and Thames Valley Strategic Clinical Network End of Life lead Dr Barbara Barrie said: “Our job isn’t just about health and survival.

“This new film is a great example of what can be achieved through good end-of-life care.”

What is your view on end-of-life plans? Tell us in the comments section below.

Factors most important to people at the end of their life often include having pain and other symptoms managed effectively, being surrounded by loved ones and being treated with dignity.

Dying in a preferred place is important too. In a recent survey only three per cent of respondents said that they wanted to die in hospital yet, nationally, 52 per cent of deaths among those between 75 and 84 take place in hospital.

Dr Barrie said: “The proportion of people dying at home or in care homes continues to increase, but there’s more to be done.

“Early conversations with patients and their carers is vital.”

Local health commissioners are working to ensure patients’ wishes are respected.

Electronic palliative care record

Alongside encouraging early discussions, doctors in the area are using an ‘electronic palliative care record’.

This means that vital information about carer’s details, patient’s wishes on resuscitation and preferred location for death is available to every professional caring for someone at the end of their life.

The new film, available on YouTube, tells the story of Molly and the care team that surrounded her towards the end of her life.

Dr Barrie said: “Molly got to die at home, her dignity preserved and with no unnecessary medical interventions. All families in Berkshire should expect the same level and quality of care shown in this film.”


 
Complete Article HERE!