Study finds unwanted care near death

West Palm Beach, Fla. — Americans suffer needless discomfort and undergo unwanted and costly care as they die, in part because of a medical system ruled by “perverse incentives” for aggressive care and not enough conversation about what people want, according to a report released Wednesday.

palliativecareAlthough people repeatedly stress a desire to die at home, free from pain, the opposite often happens, the Institute of Medicine found in its “Dying in America” report. Most people do not document their wishes on end-of-life care and even those who do face a medical system poorly suited to give them the death they want, the authors found.

The result is breathing and feeding tubes, powerful drugs and other treatment that often fails to extend life and can make the final days more unpleasant. The report blamed a fee-for-service medical system in which “perverse incentives” exist for doctors and hospitals to choose the most aggressive care, inadequate training for those caring for the dying, and physicians who default to lifesaving treatment because they worry about liability.

Recommendations of the institute, a private nonprofit arm of the National Academy of Sciences, often make their way into U.S. laws and federal agency policies.

“It’s not an intentional thing. It’s a systemic problem,” said David Walker, the former U.S. comptroller general, who co-chaired the committee of 21 experts that issued the 500-page report.Palliative-Care

Advance directives including living wills have been unpopular and ineffective, the report says. It urges repeated conversations about patients’ wishes beginning far earlier than many would think — perhaps as teenagers — and continuing the talks throughout life.

“The fee-for-service model, the lack of coordination between medical and social services, the challenges that individuals face in finding a provider who’s willing and knowledgeable to speak with them about death and dying all conspire against them coming up with the right individual plan,” said Philip Pizzo, a doctor who was co-chair with Walker.

Pizzo wrote: “Even though death is very much part of the cycle of life, thinking and talking about one’s own death usually remains in the background. It is our hope that this report will lead to improvements in end-of-life care and the experience of dying for all.”

Palliative care praised

The report praised programs in palliative care, which focuses on treating pain, minimizing side effects, coordinating care among doctors and ensuring that concerns of patients and their families are addressed. This type of care has expanded rapidly in the past several decades and is now found in a majority of U.S. hospitals, but the report says many physicians have no training in it.

Palliative-Care2“This report is relevant to persons who are seriously ill, their parents, children, extended families which essentially means every American,” said VJ Periyakoil, director of Palliative Care Education and Training at Stanford University’s School of Medicine, who was not involved in the report.

In many ways, the report is a repudiation of the controversy created by the term “death panel” in response to President Barack Obama’s health care law. The claim centered on the government saving money by deciding who would live and who would die. The controversial proposal never found its way into the law, the 2010 Affordable Care Act.

In fact, the report says the very type of end-of-life care Americans say they want would shrink medical bills and reduce the governmental burden.

“They will have a higher quality of life, and it’s very likely to be less expensive,” said Rep. Earl Blumenauer (D-Ore.), a frequent voice on end-of-life issues who reviewed the report. “But the main key here is that we should be giving people what they want.”

Blumenauer has sponsored a bill to allow Medicare to pay doctors for having end-of-life conversations with patients. That is the very idea that set off the “death panel” fury, which generated the most widespread and high-profile conversations on end-of-life care in the United States since the case of Terri Schiavo, a brain-damaged Florida woman who became the center of a protracted court fight over having her feeding tube removed.

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End-of-life care: balancing money, time and quality of life

During elementary school, we bought a hamster, Nibbles. At two years old, she developed swelling in her abdomen. Most hamsters only live a year or two, so Nibbles had reached a ripe old age. Instead of letting her expire and watch the inevitable circle of life continue, my family took her to the vet to get her stomach drained. The procedures, costs and time spent were irrelevant because she died shortly after. While this may seem like a trivial story about a young boy unwilling to part with his first pet, there are broader lessons for our spending on end-of-life health care. I’m not comparing the value of a hamster life to a human one, but the basic principles and approaches to care are

According to a 2013 article from the Medicare News Group, the Center for Medicare and Medicaid Services reported that 25 percent of the 2010 annual Medicare spending went towards the 5 percent of Medicare beneficiaries that died that year. There are two staggering points embedded in this fact. First, a quarter of the budget went towards 5 percent of the beneficiaries, and second is that Medicare spent $131 billion ($524 billion annual budget) in 2010 on people that never saw 2011.

One of the biggest barriers to fixing our skyrocketing end-of-life spending is our society’s profound discomfort with death. At its root, it’s a cultural problem—young people don’t understand death. We learn from a young age to resist the concept of death, and parents propagate this by shielding their children from the inevitable. And yet, the reality is that one day everything dies. In Atul Gawande’s 2010 New Yorker article “Letting Go,” the author writes that “modern medicine is good at staving off death with aggressive interventions–and bad at knowing when to focus, instead, on improving the days that terminal patients have left.” When we have the tools to prolong life, it’s hard to resist the temptation. How can we expect patients and families to make decisions that fly in the face of their gut instincts–to extend the life of themselves or their loved one? How can we expect doctors to make decisions that go against their training? As Siddhartha Mukherjee wrote in his book, The Emperor of All Maladies: A Biography of Cancer, “In new and sanitized suburban towns, a young generation thus dreamed of cures – of a death-free, disease-free existence. Maybe we need to reevaluate our priorities. All too often these life-prolonging interventions sacrifice quality of life for the patient in the name of extending it.

EndOfLifeCareSOS024HIRESsmallOne way to incentivize different end-of-life treatment regimens involves changing how we pay for end-of-life care. In theory, we could limit spending by having payers deny coverage for aggressive procedures to people who are very old and very sick. However, that is clearly neither a legal option nor a moral one. Moreover, the onus of cost control does not fall on the payer. Instead, it should be the physician’s responsibility to steer patients to lower costs and more effective hospice and palliative care programs. Focus on the doctor-patient relationship—not the pharma-patient or hospital-patient relationship—has become paramount in the world of health care. It would be a waste not to use this connection for the best interests of the patient.

By some measures, it may seem like we’re already moving towards more utilization of hospice and palliative care. The CDC reported in 2011 that Medicare beneficiaries are dying at a later age—and less frequently in the hospital. Hospice-use at time of death for Medicare beneficiaries almost doubled between 2000 and 2009, from 21.6 percent to 42.2 percent. The transition to hospice is great because we know that an acute care hospital is the most expensive place to die. However, that’s not the whole story. The data in their report, published in the Journal of the American Medical Association, suggest that hospice care has largely become an “add-on” to acute care hospital stays, so there may be less effect on resource utilization than was previously imagined. In 2009, 40.3 percent of “late-hospice referrals” followed on the tails of an ICU stay, a measureable increase from 2000.

Another important consideration is length of hospice stay. Maximum cost-savings in hospices are achieved when patients stay at least seven weeks. However, the percentage of Medicare beneficiaries (who are also cancer patients) who stayed in hospice for less than or equal to three days increased from 7.6 percent to 12.7 percent from 2000-2009. Overall, the percentage of decedents with less than or equal to three day hospice stays increased from 4.6 percent to 7.6 percent. This change suggests that while more people may die in hospice, they don’t necessarily spend a lot of time there.hospice025

It is important to acknowledge the difficulty in addressing end-of-life care. After all, a major hurdle lies in identifying the last year of life. Unfortunately, the process for this determination starts after the patient dies. Researchers measure back 365 days to examine the care received in the last year of life. Physicians can give prognoses of “six months to live” or “two years to live,” but those are often incorrect. Regardless of how much data CMS collects on end-of-life spending, it remains hard to address the problem because there is no way to know that you’ve entered the last year until it’s over.

Unlike Colorado’s former governor Richard Lamm, I don’t believe that the elderly have a “duty to die and get out of the way.” I do believe that we as a society have two responsibilities: to ensure the most comfortable death possible for the elderly and their families, and to spend our health care dollars in ways that improve patient health. It just so happens that hospice and palliative care can achieve those complementary goals, whereas inpatient hospital stays tend to work in opposition of them both.

Coming back to our circle of life, I wonder how I would have reacted if the vet had told me Nibbles was dying and there was nothing I could do. I can’t imagine I would have reacted well. Reflecting on the experience over a decade later, I realize that we must first grapple with death as individuals and learn to take comfort in the inevitable. Only then can we collectively address end-of-life care to make it more efficient and more focused on providing comfort, rather than aggressive cures, as a patient approaches death.

Complete Article HERE!

Dying to Know Day a national call to action to remove taboos around death


Death 'fans' Clive Salzer, Gypsy Artemis and Anthea Paterson planning events around Dying

Death ‘fans’ Clive Salzer, Gypsy Artemis and Anthea Paterson planning events around Dying to Know Day on the Central Coast.

For Umina retirees Anthea Paterson and Clive Salzer, life has never been better since facing up to death.

The couple, who call themselves “death fans” say they had a life-changing experience after attending an end-of-life course.

“Both our mothers are 94 and approaching death, so we went along to an end of life course to try and prepare ourselves for what is to come,” Mr Salzer said.

“While it was very emotional, the experience has changed our outlook on life and death completely.”

The pair are now part of the Central Coast End of Life Collective, which is associated with the Groundswell Project – the group behind Dying to Know Day.

“This is a national day of action challenging the taboo of death and bringing to life conversations around death, dying and bereavement,” Central Coast organiser Gypsy Artemis said.

Making a will is an important part in dealing with the inevitability of death.

Making a will is an important part in dealing with the inevitability of death.

“To me, Dying to Know Day is about saying things you may wish you’d never left unsaid.”

Ms Artemis, formerly known as Kim Ryder, said her fascination with “society’s last taboo” was sparked after a near-death experience in 1997.

“This changed my outlook on life forever and then my mum was diagnosed with terminal cancer and died in 2008. This was my first first-hand experience with death and I started thinking about how we, as a society, don’t deal with death very well.”

For Mrs Paterson, talking about death has helped her deal with grief associated with the death of her father.

“It’s not a morbid thing, this is about exploring death to enhance life,” she said.


Find out information about how to organise your own funeral, alternatives to cremation, how to make a will and advanced care plan at Dying to Know events next week. For details visit

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Quebec passes landmark end-of-life-care bill

Act respecting end-of-life care, Bill 52, allows terminally ill patients to choose death

veronique-hivon-dying-with-dignityTerminally ill patients in Quebec now have the right to choose to die.

The non-partisan Bill 52, also known as an act respecting end-of-life care, passed Thursday afternoon in a free vote at the National Assembly in Quebec City.

‘Dying with dignity means dying with the least amount of suffering,’— Véronique Hivon, PQ member of the National Assembly

The bill passed 94-22. There were no abstentions.

“Sometimes when you are suffering in pain, one hour can feel like one week.… The protection of the vulnerable is reflected in every aspect of this bill,” said Parti Québécois member of the National Assembly Véronique Hivon, who drafted the bill when she was minister of social services under the former PQ government.

Bill 52 allows for and outlines under which conditions terminally ill Quebecers can request to receive medical aid in dying.


Health Minister Gaétan Barrette, right, stood with members of the National Assembly from the three other parties (including Véronique Hivon, who drafted the bill) in late May to affirm the cross-partisan support for Bill 52. (CBC)

The main indicator for requesting medical aid in dying is “an incurable disease, an incurable illness, which is causing unbearable suffering.”

“For me, dying with dignity means dying with the least amount of suffering … and respecting who that person always was during his or her whole life,” Hivon said in the National Assembly before the vote took place.

Her speech was followed by applause and a standing ovation.

Liberal Christine St-Pierre was one of the 22 who voted against Bill 52.

“I don’t believe it’s right to give [anyone] the power to kill somebody,” St-Pierre said.

This legislation is the first of its kind in Canada. Its passage comes at a time when the right to die is being heavily debated in the rest of the country.

The Parti Québécois tabled the bill nearly a year ago after years of work from both the PQ and the Liberal government that came before it.

A committee on dying with dignity was assembled during Jean Charest’stenure as Quebec premier to study the issue and produce a report.

Its massive report, filed in March 2012, provided the foundation for Bill 52.​

However, Liberal Leader Philippe Couillard refused to play ball with the PQ when the party tried to force the bill into passage right before calling an election. Bill 52 died on the order paper as a result.

During the 2014 Quebec election campaign, Couillard promised to reintroduce the bill as it was drafted at the earliest possible moment during the new parliamentary session.

He also got the support from all four parties to reintroduce the bill at the stage it had died, instead of starting from square one.

It was reintroduced in late May by the new Liberal government.

Liberal Health Minister Gaétan Barrette made that announcementwhile standing side by side with MNAs from the three other parties.

“Between the four of us, we think the bill will pass strongly,” Barrette said at the time.

Complete Article HERE!

A ‘Code Death’ for Dying Patients


Sadly, but with conviction, I recently removed breathing tubes from three patients in intensive care.

As an I.C.U. doctor, I am trained to save lives. Yet the reality is that some of my patients are beyond saving. And while I can use the tricks of my trade to keep their bodies going, many will never return to a quality of life that they, or anyone else, would be willing to accept.

Code DeathI was trained to use highly sophisticated tools to rescue those even beyond the brink of death. But I was never trained how to unhook these tools. I never learned how to help my patients die. I committed the protocols of lifesaving to memory and get recertified every two years to handle a Code Blue, which alerts us to the need for immediate resuscitation. Yet a Code Blue is rarely successful. Very few patients ever leave the hospital afterward. Those that do rarely wake up again.

It has become clear to me in my years on this job that we need a Code Death.

Until the early 20th century, death was as natural a part of life as birth. It was expected, accepted and filled with ritual. No surprises, no denial, no panic. When its time came, the steps unfolded in a familiar pattern, everyone playing his part. The patients were kept clean and as comfortable as possible until they drew their last breath.

But in this age of technological wizardry, doctors have been taught that they must do everything possible to stave off death. We refuse to wait passively for a last breath, and instead pump air into dying bodies in our own ritual of life-prolongation. Like a midwife slapping life into a newborn baby, doctors now try to punch death out of a dying patient. There is neither acknowledgement of nor preparation for this vital existential moment, which arrives, often unexpected, always unaccepted, in a flurry of panicked activity and distress.

We physicians need to relearn the ancient art of dying. When planned for, death can be a peaceful, even transcendent experience. Just as a midwife devises a birth plan with her patient, one that prepares for the best and accommodates the worst, so we doctors must learn at least something about midwifing death.

For the modern doctor immersed in a culture of default lifesaving, there are two key elements to this skill. The first is acknowledgment that it is time to shift the course of care. The second is primarily technical.

For my three patients on breathing machines, I told their families the sad truth: their loved one had begun to die. There was the usual disbelief. “Can’t you do a surgery to fix it?” they asked. “Haven’t you seen a case like this where there was a miracle?”

I explained that at this point, the brains of their loved ones were so damaged that they would most likely never talk again, never eat again, never again hug or even recognize their families. I described how, if we continued breathing for them, they would almost definitely be dependent on others to wash, bathe and feed them, how their bodies would develop infection after infection, succumbing eventually while still on life support.

I have yet to meet a family that would choose this existence for their loved one. And so, in each case, the decision was made to take out the tubes.

Now comes the technical part. For each of the three dying patients, I prepped my team for a Code Death. I assigned the resident to manage the airway, and the intern to administer whatever medications might be needed to treat shortness of breath. The medical student collected chairs and Kleenex for the family.

I assigned myself the families. Like a Lamaze coach, I explained what death would look like, preparing them for any possible twist or turn of physiology, any potential movements or sounds from the patient, so that there would be no surprises.

Families were asked to wait outside the room while we prepared to remove the breathing tubes. The nurses cleaned the patients’ faces with warm, wet cloths, removing the I.C.U. soot of the previous days. The patients’ hair was smoothed back, their gowns tucked beneath the sheets, and catheters stowed neatly out of sight.

Then, the respiratory therapist cut the ties that secured the breathing tube around the patients’ neck. As soon as the tubes were removed and airways suctioned, families were invited back into the room. The chairs had been pulled up next to the bed for them and we fell back into an inconspicuous outer circle to provide whatever medical support might be needed.

I stood in the back of the room, using hand motions and quietly mouthing one-word instructions to my team as the scene unfolded — another shot of morphine when breathing worsened, a quick insertion of the suction catheter to clear secretions. We worked like the well-oiled machine of any Code Blue team.

Of those three Code Death patients, one died in the I.C.U. within an hour of the breathing tube’s removal. Another lived for several more days in the hospital, symptoms under watch and carefully managed. The third went home on hospice care and died there peacefully the next week, surrounded by family and friends.

I would argue that a well-run Code Death is no less important than a Code Blue. It should become a protocol, aggressive and efficient. We need to teach it, practice it, and certify doctors every two years for it. Because helping patients die takes as much technique and expertise as saving lives.

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