Category: Extraordinary Measures

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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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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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Assisted Death Laws Won’t Make It Better to Die in the US

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SOME PEOPLE JUST want to die. Not because they are trapped by depression, anxiety, public embarrassment, or financial ruin. No, these poor few have terminal illnesses. Faced with six months to live, and the knowledge that the majority of those 180 days will be bad ones, they seek a doctor’s prescription for an early death.

001Soon, terminal patients in California could have that option. Currently sitting on Governor Jerry Brown’s desk is a bill that, if signed into law, would allow doctors to prescribe life-ending drugs. Not surprisingly, this is controversial. Proponents believe the law would save diseased people from the worst days of their prognoses. Opponents say the law violates the sanctity of life, and can be exploited by ill-meaning family, physicians, and insurance companies at the patient’s expense.

But there’s a third group who believe this debate misses the real problem: that the American health care system is just an all around miserable place to die.

In the 1990s, Dr. Jack Kevorkian’s name became synonymous with so-called assisted suicide. He argued, famously and flamboyantly, that patients should have the right to euthanasia if the suffering from age, disease, even mental illness overwhelmed their will to live. “The patient’s autonomy always, always should be respected, even if it is absolutely contrary, the decision is contrary to best medical advice and what the physician wants,” he once said in court.

Kevorkian lost his court battles, and spent eight years in a Michigan prison. But his fight was not in vain. Four states have since legalized physician-aided death (and would-be fifth New Mexico has a law in legal review). The first was Oregon, and its Death With Dignity Act has become the model for the rest. There the patient must first have a six-months-to-live prognosis. Then, the patient has to write a request to the physician (who may refuse on moral grounds). Two witnesses have to sign that request, one of whom is not related to the patient, not in the patient’s will, and not the patient’s physician or an employee of the patient’s health care facility.

If the first doctor approves the request, the patient has to give it to a second doctor, who examines medical records to confirm the diagnosis and make sure the patient has no mental illnesses that might affect his or her decision-making ability. After a fifteen-day waiting period, the patient has to confirm that he or she still wants the doctor’s aid in dying. Only then will the doctor prescribe the lethal prescription. And the patient is under no obligation to take it, either.

In fact, since it was passed into law, only about 65 percent of the 1,327 people prescribed the medication have used it.

Raising the stakes in California

On December 31, 2013, California resident Brittany Maynard had a master’s degree in education, several years of experience teaching abroad in orphanages, and a husband. On January 1, 2014, she had stage two brain cancer. She went through surgery, and the doctors cut away the cancerous parts of her brain. But in April, the disease returned. Stage four glioblastoma, with little hope of treatment. Her doctor informed her she had six months to live.

Given the choice, Maynard said she would rather die before the cancer’s debilitating final stages destroyed her health completely. A few months later, she moved from California to Oregon.

Maynard took her lethal dose of medication on November 1, 2014. Her last message, posted on her Facebook profile, read:

“Goodbye to all my dear friends and family that I love. Today is the day I have chosen to pass away with dignity in the face of my terminal illness, this terrible brain cancer that has taken so much from me … but would have taken so much more.”

Maynard’s broadcasted decision put the public behind California’s bill. Like the other states’ laws, it is modeled after Oregon’s, with some some add-ons meant to assuage opponents. California patients would have to request aid in dying three times instead of twice. “The physician who prescribes the medication must have a one-on-one conversation with the patient, to verify that it is their choice, and that no one is putting any pressure on the patient,” says Ben Rich, a lawyer and expert in end-of-life bioethics, from the University of California, Davis. And after ten years, the law would expire.

Missing the point

But for some in the palliative care community—the doctors, nurses, and caregivers that manage end-of-life care—the battle over aid in dying is a distraction from the real problems that dying people face. “I think it’s a moot debate that’s divorced from the reality of end-of-life care,” says David Magnus, a bioethicist at Stanford Medical School. That reality is clear in a report published last year by the Institute of Medicine of the National Academies of Science.

Titled Dying in America, it showed that patients often can’t get—or don’t know about—the type of treatment they actually need to be comfortable and pain-free in their final months, weeks, days, and hours. This is probably tied to the fact that America only has half as many palliative care physicians as it needs.

That’s not all. Magnus says insurance companies favor big lifesaving efforts and shiny technology. “We put a lot of emphasis on technology and innovations, and this tends to downgrade communication,” says Magnus. And clear communication about death is probably the first prescription is probably what most terminal patients need most.

As a result, patients end up getting treatment that doesn’t help them have a more comfortable death. In fact, it become the opposite. “You’ve got a patient who is sick, going though a roller coaster ride,” says Magnus. This includes cycles of chemotherapy and remission, trips to surgery to intensive care to therapy to home, then back again. “And each time, it’s much more difficult on the patient and on the patient’s family,” he says.

“A lot of what we see are patients who have some sense that their condition is bad but are not told explicitly how bad their prognosis is,” says Magnus. For example, many patients don’t understand the difference between palliative and curative treatments. “When they hear that their condition is treatable, they think there is a chance that they can be cured,” says Magnus. But treatable, to physicians talking to a terminal patient, often mean simply easing that patient’s suffering. Treatable has nothing to do with living or dying.

Palliative communication

Other studies back up Dying in America. Last year, scientists published in the Journal of Oncology that with better communication, more terminal patients might choose hospice rather than more radiation or chemotherapy. A2005 study showed that doctors regularly missed opportunities to convey information to patients that would affect their decisions about end-of-life care. Magnus has also done research on doctor-patient communication, and what he sees is usually pretty dismal.

“The caveat, is it’s very hard to communicate bad news to families,” says Magnus. He says it’s understandable that doctors hedge their discussions towards the positive. This goes back to the end-of-life training that doctors do not receive in medical school.

But until the medical system gets fixed (don’t hold your breath), patients can circumvent the assisted death circus by getting advanced care directives, such as a living wills. These are legal documents that outline how you should be treated in the event of a severe illness, accident, or just plain growing old. “100 percent of us are going to die, and only a quarter of Americans have engaged in formal advanced care planning,” says Nathan Kottkamp, founder and chair of National Healthcare Decisions Day, which advocates that people use April 16 to sit down, discuss, and develop their advanced care plan. The groups website has resources for drafting up the legal documents in every state.

In California, Governor Brown has until October 71 to sign the aid in dying bill into law. While he hasn’t tipped whether his pen will enact or veto, he has criticized the legislative gymnastics that let supporters get the bill voted on without first going through scrutiny by committees. Adding to speculation that he may veto, Brown is also a former Jesuit seminarian (Catholic groups oppose the bill).

But the bill has a groundswell of public support. According to a bipartisan public opinion poll, 69 percent of Californians are in favor of physician-aided death. “Why is this touching a nerve? Why is it millions of people want these laws on the books?” asks Magnus. He doesn’t believe it’s because so many people are terrified of having a sickness steal away their preferred choice: Life. Rather, he says it speaks to a more common fears: dying in pain, without control, without dignity, surrounded by people they do not know in a place they do not want to be. The choice that concerns them is not whether to die, it’s how.

1 UPDATE: Correction 12:12am ET 9/30/2015 The original story said the enactment deadline was September 28. In California, the governor has 12 working days to act on bills (such as the End of Life Option Act) passed in special Assembly sessions. But, that time began when the bill landed on the governor’s desk (which was September 25), not when the bill cleared the Assembly (September 11). If the governor doesn’t sign or veto within that deadline, the bill automatically becomes law.

Complete Article HERE!

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As Alzheimer’s Symptoms Worsen, Hard Conversations About How To Die

By Rebecca Hersher

Six years after he was diagnosed with early onset Alzheimer's disease, Greg O'Brien is thinking differently about the future. Even as he fights to hold onto his memory, he and his wife Mary Catherine are discussing how to let go.
Six years after he was diagnosed with early onset Alzheimer’s disease, Greg O’Brien is thinking differently about the future. Even as he fights to hold onto his memory, he and his wife Mary Catherine are discussing how to let go.

In this installment of NPR’s series Inside Alzheimer’s, we hear from Greg O’Brien about his decision to forgo treatment for another life-threatening illness. A longtime journalist in Cape Cod, Mass., O’Brien was diagnosed with early onset Alzheimer’s disease in 2009.

These days, Greg O’Brien is thinking differently about the future. It’s been six years since his Alzheimer’s diagnosis, and he’s shared with NPR listeners a lot about his fight to maintain what’s left of his memory. He’s shared his struggles with losing independence, and with helping his close-knit family deal with his illness.

What O’Brien hasn’t wanted to talk about until now is the diagnosis he got two weeks before he and his family learned he had Alzheimer’s disease: O’Brien also has stage 3 prostate cancer. Now, as his Alzheimer’s symptoms worsen, the cancer is increasingly on his mind.

“I just don’t know how much longer I can keep putting up this fight,” he says.

This summer, Greg and his wife, Mary Catherine O’Brien, have started talking about how he wants to spend the final years of his life — and what Greg calls his “exit strategy.”

He hopes the cancer will kill him before the Alzheimer’s disease completely robs him of his identity.

Recently Greg sat down with his close friend and primary care physician, Dr. Barry Conant, and with Mary Catherine, to talk about that decision and about Greg’s prognosis.

Interview Highlights

Dr. Barry Conant on the ethics of not treating Greg’s prostate cancer

I think honestly, in a perverse kind of a way, it gives you solace.

Maybe it will shorten the period in your life which you find right now to be something you want to avoid, and so far you’re only talking about neglect of a potentially terminal condition.

If you decided to be more proactive, that’s where the discussion becomes more interesting. Some people would say I’m violating 001my Hippocratic oath by discussing that, but I think — I don’t feel uncomfortable having that discussion. And, while you still have the ability to reason, it wouldn’t be a bad discussion to have with your family.

Conant — who, like O’Brien, has cancer — consoles Greg that his family will be OK

Nobody is indispensable — nobody. And if you or I were to immediately vanish from the Earth, our families would do fine. They have family support. They have friends’ support. They’re in a nice community. It’s a terrible sense of loss that they’ll have, but they will do fine. And if they’re honest with themselves, they’d realize that they’re going to do fine.

Greg and Mary Catherine discuss Greg’s prognosis

Mary Catherine: Going through Alzheimer’s, it’s not the plan.

Greg: Where do we go from here?

Mary Catherine: That I don’t know. …

Greg: It’s getting so frustrating for me. I mean I care, obviously, deeply about you and the kids. I could see 3 or 4 more years of this, but I can’t keep the fight up at this level. We talked about that the other night. How did you feel about that?

Mary Catherine: Wow … (chokes up). I don’t want to talk about it.

Greg: Can you see it coming?

Mary Catherine: Yeah, I can. Fast.

Greg: Are you OK with me not treating the prostate cancer?

Mary Catherine: Only because you’re OK with it. You need that exit strategy, and the exit strategy with Alzheimer’s is horrible. Well, they’re both horrible.

Greg: You know I’ve been there with my grandfather and mother, and don’t want to take my family and friends to that place.

Mary Catherine: Right. I know. I understand.

Greg: Do you still love me, dear?

Mary Catherine: Yes, I do, dear.

Greg: I love you, too.

Complete Article HERE!

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Whose Job Is It to Talk to Patients About Death?

In the U.S. health-care system, it’s often unclear who should talk to patients about end-of-life care options. Medicare’s new reimbursement scheme may incentivize doctors to take ownership of those difficult conversations.

talking to a patient about death

By Ricardo Nuila

When Pedro Faust Tzul Menchu, a 45-year-old man with colon cancer, told his oncologist he couldn’t move his leg, a medical alarm bell went off. He’d received chemotherapy a week before, so his other symptoms of vomiting and jaundice weren’t entirely surprising. But the lack of movement in his legs could have been a sign of a spinal-cord compression—when an infection or tumor strangles the nerves running up and down the spine—and potential cord compressions are always treated as an emergency. Pedro was sent straight from the oncology clinic to the hospital, where he was assigned to me as a patient. As Pedro’s hospitalist, the doctor in charge of orchestrating his care, my main job was to figure out if his spinal cord was at risk.

An MRI showed that the cancer had spread to Pedro’s tailbone and throughout his abdomen, but hadn’t damaged his spinal cord. All the specialists I consulted—neurosurgeons, interventional radiologists, more oncologists—recommended a small procedure to protect the collapsed vertebrae so that a future spinal-cord compression might be avoided. When the weekend was over, I handed off Pedro’s care to a partner of mine, another hospitalist, since we typically rotate on Mondays. “They’ll perform the procedure this coming week,” I explained before leaving. Pedro sat up in bed, shook my hand, and thanked me.

Only later did I realize that I never told Pedro how close he now was to dying. His cancer had spread despite two lines of chemotherapy, a previous “debulking” surgery to remove as much of the tumor as possible, and constant surveillance with CT scans. It had nearly claimed the use of his legs. Most likely, it would claim his life within the next six months.

During our first meeting in the hospital’s cancer ward, Pedro confided to me how happy he was to have a doctor who spoke to him in his native Spanish. “It feels so good to be understood,” he said. “Hopefully, with God’s help, you’ll find a way to help me.” We didn’t only talk about his spinal cord. Every time I checked on him, we chatted about his old life in Guatemala.

A couple of times, Pedro arranged it so that his family visited while I made rounds, so I could talk to them all together about the steps that lay ahead. “I’m sorry, but it looks like the cancer has grown,” I told them. I mentioned the upcoming procedures, the possibility of radiation therapy, how the oncologist was considering a third line of chemotherapy, but I admit I never fully connected the dots for them. Telling him what this all meant, how it was almost certain that he would die sooner than he thought, proved too difficult. Like any good doctor, I know how to keep patients focused on the positives—“your family’s all here,” or “it’s good to see you sitting up”—while respecting reality. But something about Pedro, with his calm smile and earnest pleas for my help, made it more difficult than usual to summon up the courage to deliver bad news.

Pedro’s daughter almost seemed to sense my trepidation. She couldn’t have been more than 8 years old, but that didn’t keep her from staring at me with doctor-suspicious eyes, as if I might be the boss of her father’s fate. Whenever she did this, I smiled at her and turned my attention toward Pedro. “Is there anything else I can help you with?”

A couple of days later, I traveled to Chicago to participate in a panel discussion that gathered palliative-care specialists from around the country with patient advocates, ethicists, social workers, and internists (like me), as well as representatives from organizations such as the American Association of Critical-Care Nurses and the Society of Hospital Medicine. The central question: How can we improve end-of-life care in the hospital? While everyone brought a different perspective, what bound us together, caregivers and the bereaved alike, was how much the experience of a hospital death had impacted us—how impersonal it had become, how mechanized, how inhumane. One of the panelists described losing her 36-year-old husband to metastatic colon cancer. Even though she saw a multitude of doctors every day, when her young husband found himself struggling to breathe near the end, none of them dared to discuss the inevitable. “No one told us anything,” she said.

That’s when I thought back to Pedro. By not telling him clearly what the progression of his cancer meant, had I inched him toward a hospitalized death, one that involved shocking his heart if it stopped and pureed food and waking him up every four hours for vital signs? The reason I had been invited to the panel in the first place was an essay I wrote about the difficulty of giving end-of-life care to undocumented patients. I described one patient in particular, a Guatemalan man who did not want to spend his last weeks cycling through the emergency room for pain medications. With the help of the consulate, my colleagues and I arranged to fulfill his dying wish to return to his home country. But the interest and care I’d shown this one patient meant nothing for the next. In not fully explaining Pedro’s prognosis to him, I simply hadn’t done my job.

Or was it my job? Last month, Medicare announced that it would begin to reimburse health-care providers for discussions on end-of-life options, sparking a new debate about who, exactly, should be having those discussions. Whose responsibility is it to clarify how many times a patient wants to be shocked if her heart stops? The critical-care doctor? Who should give the patient a well-informed and plain-spoken prognosis? The oncologist? One of the words that kept coming up in the meeting in Chicago was ownership. In the American medical system, with all its experts, shift work, and moving parts, it can be difficult to place ultimate responsibility for a patient’s care on one individual. That is to say, responsibility is shared—which is how certain duties, like talking with a patient about how close he is to death, can fall through the cracks.

But I can’t help but think that it was I and I alone who failed Pedro. I wasn’t his oncologist, I wasn’t the interventional radiologist, but of all his doctors, I was the one who could best communicate with him. I spoke his language. As it stands right now, there’s no way to guarantee that patients like Pedro receive counseling about different care options (maybe he doesn’t want to go through another round of chemotherapy) or help explaining their end-of-life decisions to family members (maybe he doesn’t want to spend his final days in an ICU).

Under the new Medicare proposal, scheduled to go into effect this fall, any qualified team member—a doctor, a nurse, an assistant—can bill for the time it takes to discuss all the different procedures and interventions that a patient like Pedro might face. Had this been an option during Pedro’s hospitalization, somebody else caring for him might have caught my oversight and talked with me about it, or perhaps held a conversation with Pedro herself and billed for it. Medicare’s reimbursement scheme doesn’t just incentivize holding difficult discussions, it also assigns responsibility. It’s a way of establishing ownership over a difficult conversation.

The day after the Chicago meeting ended—the same day Medicare announced its new plan—I tried finding Pedro in the hospital. I wasn’t scheduled to work, but I thought I might make up for my lack of clear communication by telling him what the new findings really meant. Unfortunately, Pedro was gone. I saw in the chart that the spinal procedure had gone smoothly and that he had actually walked out of the hospital.

A month later, I saw his name outside one of the doors in the cancer unit. Since our last visit, he’d lost weight and endured awfulness, his femur snapping spontaneously as he attempted to walk one morning, so overrun was it by tumor, but somehow Pedro retained his smile and grace. I told him I’d thought so much about our conversations that I wrote an article about him, one I hoped would help doctors think about how they communicate bad news, and he gave me permission to use his name. Fortunately, another of the hospitalists had taken the time to hold the difficult conversation with him. Pedro and his family knew he would soon die, and were preparing for such.

Still, I couldn’t help but feel a professional shame, one I used to feel as a younger doctor when nurses called to remind me of some routine task I had forgotten about, one that made me occasionally punch myself in the thigh and say, “I really need to remember to do that next time.” For Pedro’s sake, I really do.

Complete Article HERE!

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Maplewood death shows critical need for end-of-life directive

Paramedics and nursing home workers across Minnesota can relate to the difficult decision that was made.

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Gloria Scott, right, signs a “do not resuscitate” order while at the hospice wing of Margaret Tietz Nursing and Rehabilitation Center in the Queens borough of New York on Nov. 26, 2009. At left is her physician, Dr. Lauren Shaiova.

A life-or-death decision by Maplewood paramedics, who stopped life support for an elderly woman at her husband’s insistence, underscores why individuals should have legal documents spelling out the care they want in what can be frantic and confusing end-of-life emergencies, health officials said Wednesday.

Paramedics and nursing home workers across Minnesota can relate to the difficult decision that was made Aug. 7, when medics initially revived 71-year-old Linda Sandhei and started wheeling her to an ambulance, only to have the woman’s husband tell them to stop, according to a police report of the incident. Sandhei died soon after.

Advance directives and do-not-resuscitate (DNR) orders can provide clear guidance for such high-stress decisions. But absent those documents, medics are often asked to trust relatives who are distraught and may not know the wishes of their dying loved ones, said Dr. Jeffrey Ho, medical director for Hennepin County Medical Center’s emergency management services (EMS).

“What we’re trying to avoid is some random person coming up to us and saying, ‘Stop, I don’t want Mabel resuscitated!’ And we ask, ‘Well, who are you?’ and he says, ‘Oh, I’m her son,’ ” Ho said. “We have no way of verifying if that’s true or not, and we really have no way of verifying whether Mabel would actually want to be resuscitated or not.”

Research has shown that patients’ wishes are followed more often when spelled out in advance directives, and that relatives suffer less stress and anxiety. But such documents remain uncommon, even after a coordinated campaign called Honoring Choices by Minnesota’s eight major health care systems to get more people to complete them. The state’s top system had completed directives from just 32 percent of its elderly outpatients, according to a study last year.

Sandhei, who had suffered from Parkinson’s disease for two decades, either hadn’t completed a directive or didn’t have one filed with the Good Samaritan nursing home in Maplewood. She was transferred there in July after being admitted to Regions Hospital, according to a police report.

Her son was at her bedside around 4 p.m. Aug. 7 when she vomited in her sleep and stopped breathing. Sandhei’s husband, Tom, arrived later and stopped the medics from loading his wife in an ambulance for transfer to a hospital. He declined to discuss the incident when reached by phone Wednesday.

Written directives aren’t always the final word in a high-stress situation when someone is dying and relatives are angry or scared. Paramedic Mike Trullinger has tried to follow DNR orders for dying patients only to be threatened by distraught relatives with lawsuits, a baseball bat and, in one rural case, a shotgun pointed at him.

“The patient had a DNR order, but the family member had a shotgun. So we performed CPR anyway,” said Trullinger, now a supervisor for HCMC’s EMS. A sheriff’s deputy eventually arrived and the man put down the weapon and became apologetic, Trullinger said. CPR failed.

Ho said his medics, too, have experienced tough situations even when patients had written documents. Sometimes the document might be improperly dated or lack a doctor’s signature, calling it into question. Other times relatives are scrambling to dig up the document from files while medics are proceeding with CPR.

Frequently, relatives who thought they were prepared to see a loved one die have a change of heart when the moment arrives.

Regardless, Ho said having that paperwork completed resolves more confusion than it creates and leaves people feeling confident in their end-of-life decisions.

“It’s a very difficult decision to be making in a split second with limited information,” he said. “It’s tough to be second-guessed afterward.”

Err on the side of life

The Maplewood Fire Department policy manual instructs medics to follow written orders but otherwise pursue resuscitation: “Until properly completed orders are presented, pre-hospital personnel will assume that no valid DNR orders exist and proceed with standing orders for resuscitation as medically indicated.”

A Hennepin County protocol governing HCMC, North Memorial, Allina, Ridgeview and Edina EMS agencies provides similar advice.

“If we are going to start a resuscitation, we need to do it right then and there,” Ho said. “If the information is not clear to us, then we are erring on the side of starting resuscitation, because we can always stop it later.”

Nursing home workers operate under similar assumptions, said Patti Cullen of Care Providers of Minnesota, a trade group for nursing homes. “From a legal perspective, we advise our members that without the presence of this DNR that is signed, that’s official, they’ve got to do every lifesaving measure, because families will sue if you don’t save a life. They won’t sue if you break ribs because you did CPR.”

The fact that the Maplewood medics halted life support in the absence of a written directive for Sandhei suggested to Ho and Cullen that they had enough information from the relatives or nursing home staff to override the bias toward continuing lifesaving efforts.

Maplewood police made no arrests in the case after an investigation concluded that the medics acted in “good faith.” The term is defined in the state’s advance-directive statute as acting in the best interests of a patient in any way short of assisted suicide.

Six Maplewood firefighters, including the chief, were suspended after a complaint was filed, but city officials declined to confirm whether the complaint was linked to Sandhei.

Cullen sympathized with the relatives and first responders, who she said appeared to act in the best interests of the family and patient.

“You know, the reason for doing that legal document,” she said, “is to get all of the family members on the same page.”

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Too young to die: Even elderly put off talking about end of life

By  Ruth Gledhill

Less than a third of people have discussed what they want to happen at the end of life. Just four per cent have written advance care plans for when they are dying. Yet more than two thirds of people questioned say they are comfortable talking about death.

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Even older people are unlikely to discuss what will happen at the end of their lives.

The NatCen survey of more than 1,300 people showed seven in ten want to die at home. This is at a time when six in ten people die in hospital.

The research, commissioned by Dying Matters Coalition, examines public attitudes to issues around death, dying and bereavement.

While people have strong views about the end of life, they are still unlikely to have discussed their own death. This was mainly because people felt death was a long way off or that they were too young to discuss it. Nearly one in ten of people aged 65 to 74 years old believed they were too young to discuss dying.

Three in ten people had never seen a dead body. Just one per cent of the sample said they would go to a minister, pastor or vicar for information about planning the end of life. Most people’s preferred choice for seeking information was a friend or family member, or their GP.

This was despite the fact that nearly seven in ten of the respondents described themselves as Christian. Nearly two in ten said they were atheist or had no religion.

Professor Mayur Lakhani, chair of Dying Matters, said: “As a practising GP, I know that many people feel frightened to talk about death for fear of upsetting the person they love. However, it is essential that people do not leave it until it is too late. Planning for needs and wishes helps you to be in control, and it helps those we leave behind.”

One carer said: “It’s not easy to talk about end of life issues, but it’s important to do. Now that we’ve put our affairs in order and are talking about what we want, we can ‘put that in a box’ as it were, and get on with living one day at a time, cherishing each day together, as I know it’s going to end one day.”

A bereaved widow said: “If you talk about dying, you can say everything you want or need to. There are no regrets.”
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