Since physiological support like respirators and defibrillators made it possible to prolong life, prolonging death has fueled a more subtle conversation
By Ann Neumann
Several factors have made politicians, particularly at the national level, reluctant to wade into the aid-in-dying conversation. Catholic leaders and their evangelical “pro-life” allies have eviscerated any politician willing to discuss aid in dying, shutting down dialogue and branding advocates as “pro-death”. By claiming to represent American religions, these vocal opponents have bifurcated the issue along political lines, all but silencing those who are religious but disagree.
Yet a conversation is taking place, with or without the presidential candidates. Since the 1970s, when physiological support, like respirators and defibrillators, made it possible to prolong life, prolonging death has fueled a more subtle conversation about what medical decisions patients and their families can make. Aid in dying is now approved by 68% of Americans, a number that rose by a striking 10 points in the course of a year, according to a Gallup poll conducted in May 2015. It’s now legal in five states with at least a dozen more considering bills or legislation.
Still, the issue was absent from the presidential race until a terminal cancer patient finally asked a question last week. Jim Kinhan, an 81-year-old with a face as rosy as his sweater, asked Hillary Clinton at a New Hampshire town hall meeting on 3 February about her position on the legalization of aid in dying.
“I wonder what leadership you could offer within an executive role that might help advance the respectful conversation that is needed around this personal choice that people may make, as we age and deal with health issues or be the caregivers of those people, to help enhance and – their end of life with dignity.” His voice was raspy, his question respectful. The Washington Post reported that Clinton “looked a bit nervous”. After a slight pause and some careful word selection, Clinton failed to take a position.
Republican candidates have also been silent about aid in dying, but it’s difficult to imagine anyone in the current conservative field will step away from the Republican party platform as they vie for traditionally Republican social conservatives. The campaign of Jeb Bush and his role in the Terri Schiavo case have even worked against the cause, helping to refresh patient concerns regarding autonomy in a way that defies party lines and past reticence.
But, unlike the fight to end abortion, which has (wrongly) focused on women’s sexual decisions and succeeded in shaming female medical choices, aid in dying is an issue that addresses male choice. That gender difference – and the fact that Republican voters skew older than Democrats – could catch up with the party and its candidates in the future. Republicans would do well to pay attention.
New Hampshire, where Kinhan lives, is home to one of the oldest populations in the country, and legislators there have tried twice in the past to establish study committees. Both times governor Maggie Hassan has vetoed the proposals. This year, as Hassan prepares to leave office, a Concord senator has tried again, introducing SB 426. It’s spurring the kind of dialogue in the state that Kinhan was hoping Clinton’s national campaign could get behind.
In the past, the very terms used to describe aid in dying have proven controversial. For more than a decade, polls showed that approval ratings depended on how questions about aid in dying were asked. If the term “assisted suicide” was used when polling, those willing to claim support for the laws were fewer. But that has begun to change; voters, exposed to repeated state-level conversations about aid in dying, and who now see that the laws have succeeded in the “laboratory of the states”, have come to understand that “assisted suicide” is not “suicide”. It is not something our culture should be united in preventing.
In an op-ed for the Concord Monitor at the end of January, Kinhan addressed the contrast between aid in dying and suicide. “The transparency and shared process of end-of-life choice is in strong contrast to the behavior known as suicide,” he wrote, emphasizing the difference between choosing not to suffer from a terminal disease and choosing to end one’s life out of despair.
“This choice is not dark and secretive,” Kinhan continued. “Personally, it rings loudly and joyfully of my readiness for what lies ahead and for thankfulness for what life has gifted me.”
Compassion & Choices, the nation’s largest aid in dying organization, has announced a call for questions for candidates. They will host an event on 17 February that gives voice to seniors who have concerns about end-of-life care. Hopefully candidates will realize what Kinhan and the movement to legalize aid in dying have shown: it’s time for a national conversation.
Complete Article HERE!
When are you officially dead? Well, that may depend on which hospital is making the call
By Sarah Kaplan
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!
Some Older Patients Are Treated Not Wisely, but Too Much
By Paula Span
Over many years, the 77-year-old patient has managed to control hisType 2 diabetes. Thanks in part to daily doses of a drug that reduces blood sugar, his glucose level is a very low 6.5 percent.
Like a lot of older people, he copes with multiple medical conditions, including high blood pressure and severe kidney disease. But with four prescription drugs, plus Tylenol forlower back pain, he’s doing reasonably well.
Oh, and he’s a hypothetical example, concocted by researchers at the University of Michigan and the Veterans Affairs Ann Arbor Healthcare System. They sent this fictional case study to primary-care professionals at Veterans Affairs medical centers across the country and asked a series of questions about the man’s treatment.
The researchers believed their nearly 600 respondents — mostly physicians, but also nurse practitioners and physician assistants — would recognize that such a patient risked developing dangerously low blood sugar, called hypoglycemia. But no. About half these professionals said they wouldn’t worry about potential harm from the man’s rigorous treatment regimen.
Evidence is accumulating that older adults with diabetes, hypertension and other conditions should be treated less aggressively than they commonly are. “Deintensification,” the Michigan researchers have named this approach.
As this and another related recent study have shown, not for the first time, getting that message out to practicing physicians has proved difficult.
“In our health care system, we are all more scared of failing to do something than of doing too much,” said Dr. Jeremy Sussman, a primary care physician and research scientist at the Ann Arbor hospital.
Under current guidelines, most older patients with diabetes don’t have to get their blood sugar to rock bottom; a 7.5 or 8 percent blood glucose level (measured as HbA1c, an average of several recent readings) produces the same benefits as very low glucose. Blood pressure readings, too, should be allowed to rise as patients age — up to 150 millimeters of mercury for systolic pressure. The previous goal was to keep it below 140.
There are good reasons to be less vigilant. In older people with diabetes, for instance, maintaining very low blood sugar — often called “tight control” — can do more harm than good. “People can feel fatigued and weak, get cold sweats, feel like they’re going to pass out,” said Dr. Tanner Caverly, lead author of the Michigan survey, published in JAMA Internal Medicine. Thefainting and falls that may result can have devastating consequences.
Further, a widely cited study called Accord, published in 2008 in The New England Journal of Medicine, found that intensive therapy to reduce blood glucose actually resulted in higher mortality.
Yet a large national study by Dr. Sussman and his colleagues, published last month in JAMA Internal Medicine, reveals how rarely deintensification occurs among patients over age 70.
Reviewing Veterans Affairs data on more than 211,000 patients, the researchers found that fewer than 19 percent of those with very low blood pressure had scaled back their medications. Only 27 percent of those with very low blood sugar had done so.
“There’s been a huge effort to ensure that fewer people are undertreated,” Dr. Sussman said. “Now, maybe we’ve crossed the line and too many people are overtreated.”
Examples of both extremes are easy to find.
Among older adults, substantial proportions still don’t take advantage of vaccines, among the simplest of health protections. A third of those over age 65 didn’t get flu shots last season, according to data from the Centers for Disease Control and Prevention. More than 40 percent haven’t been vaccinated against pneumonia, and fewer than a quarter have gotten the shingles vaccine.
But older Americans receive too many colonoscopies and too many mammograms. Last year, a study found that more than half of nursing home residents with advanced dementia, a terminal disease, were receiving drugs of questionable value; about a fifth took statins to lower cholesterol.
Overtreatment, however, rarely brings the sort of hand-wringing that undertreatment does. You might think it would be welcome news that older diabetics can do well with lower doses of medication, and that in some cases they might be able to stop taking glucose-lowering drugs altogether.
Tight control takes great effort, and it makes sense for young and middle-aged people with diabetes. The benefits accrue slowly, over years, so younger patients are more apt to receive them. The young have stronger bones and better balance, so they are less likely to be injured in the falls that too-low blood sugar can cause.
Older, frailer people with lower life expectancy and many additional health problems face different trade-offs.
“As you get older, the benefits go down and the risks go up,” said Dr. Sei Lee, a geriatrician at the University of California, San Francisco, who has written about the subject for years. “What was good for you at 55 might be bad for you at 75.”
As a member of the American Geriatrics Society’s Choosing Wisely panel, Dr. Lee helped draft its recommendation that a 7 to 7.5 percent blood glucose reading is a reasonable goal for healthy seniors. For those with additional health problems and life expectancies of less than 10 years, the panel suggested a 7.5 to 8 percent goal, rising to 8 to 9 percent for those with many medical conditions and few years ahead.
Given all that, it’s disappointing that more primary care providers in the new Veterans Affairs study never thought to tell our fictional 77-year-old that he could afford to let his blood glucose rise a bit, and maybe eat a cookie once in a while. But sometimes patients themselves resist, especially if they have been dutifully monitoring their disease for years.
Dr. Sussman recalled a veteran, about 80, who took pride in the way he’d managed his illness, testing his blood several times a day, injecting insulin, keeping his glucose below 7. He had lost weight with age, however, so Dr. Sussman suggested he stop insulin shots and begin taking the diabetes drug metformin, which comes in pill form.
The man gave it a try. “But he and his wife never lost their discomfort with doing less than they had been,” Dr. Sussman said. The patient went back to the injections.
At least his doctor had pointed out the option and explained the likely benefits. In the new Veterans Affairs study, nearly 30 percent of respondents said they lacked the time to discuss the risks and benefits. About a quarter said they feared that reducing the fictional patient’s medications could make them vulnerable to a lawsuit.
More than 40 percent worried that higher blood glucose would violate their institutions’ performance measures, the report cards doctors get — even though the Department of Veterans Affairs has never specified a target below 7 percent for these patients.
Just the contrary: The department last year announced a National Hypoglycemic Safety Initiative, changing its approach to diabetes management to avoid intensive treatment when it’s not warranted.
Still, older adults who haven’t reassessed their diabetes or blood pressure regimens for years probably should be asking their doctors if they can or should make changes. The doctors, for now, might not raise the subject themselves.
“It’s one thing to find out about something new and exciting and do it,” Dr. Sussman reflected. “It’s harder, emotionally, to look at something you’ve done for a long time and think, maybe this isn’t so good. And stop.”
Complete Article HERE!
Assisted Death Laws Won’t Make It Better to Die in the US
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.
Soon, 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!
As Alzheimer’s Symptoms Worsen, Hard Conversations About How To Die
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 my 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!
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.
By Jeremy Olson
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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Medicare to pay for voluntary end-of-life counseling, as ‘death panel’ charges lose sting
By RICARDO ALONSO-ZALDIVAR and MATT SEDENSKY
Six years ago, a proposal for Medicare to cover end-of-life counseling touched off a political uproar that threatened to stall President Barack Obama’s health care law in Congress. Wednesday, when Medicare finally announced it will make the change, reaction was muted.
At the time, former Alaska Republican Gov. Sarah Palin’s accusation that voluntary counseling could lead to government-sponsored “death panels” dictating the fate of frail elders was widely discredited. But for the Obama administration, end-of-life counseling remained politically radioactive, even as the idea found broader acceptance in society.
Dr. Joe Rotella, chief medical officer of the American Academy of Hospice and Palliative Medicine, called Medicare’s move a “little miracle,” given the “death panels” furor. He said he believes the controversy has passed.
“I think society’s going to get over it this time and see the good in it,” said Rotella. “It’s really about living in the way that means the most to you to the last moments of your life.”
The original sponsor of the idea, Oregon Democratic Rep. Earl Blumenauer, was taking no chances even as he, too, sensed a political shift. Just a few weeks ago at the White House congressional picnic, Blumenauer said he personally lobbied senior officials, handing out pocket-sized cards with his talking points.
“There was a time when the federal government could have been a leader on this, but now it’s basically responding to where the rest of America is going,” he said.
The policy change, to take effect Jan. 1, was tucked into a massive regulation on payments for doctors. Counseling would be entirely voluntary for patients.
Some doctors already have such conversations with their patients without billing extra. Certain private insurers have begun offering reimbursement. But an opening to roughly 55 million Medicare beneficiaries could make such talks far more common. About three-quarters of the people who die each year in the U.S. are 65 and older, making Medicare the largest insurer at the end of life, according to the Kaiser Family Foundation.
“As a practicing physician, and a son, and someone who has dealt with this in his own family, I would say these are discussions … that are critical to high-quality care,” said Patrick Conway, Medicare’s chief medical officer. “I would want any American who wanted to have this conversation with their clinician to have the opportunity to do so.”
Medicare is using a relatively new term for end-of-life counseling: advance care planning. That’s meant to reflect expert advice that people should make their wishes known about end-of-life care at different stages of their lives, as early as when they get a driver’s license.
The counseling aims to discern the type of treatment patients want in their last days, with options ranging from care that’s more focused on comfort than extending life to all-out medical efforts to resuscitate a dying patient.
The American Medical Association praised Medicare’s decision. “This issue has been mischaracterized in the past and it is time to facilitate patient choices about advance care planning,” said Andrew Gurman, the group’s president-elect.
Before former Palin ignited the “death panels” outcry, there was longstanding bipartisan consensus about helping people to better understand their end-of-life choices and decisions.
A 1992 law passed under Republican President George H.W. Bush requires hospitals and nursing homes to help patients who want to prepare living wills and advance directives. Similar efforts gained resonance after the 2005 death of Terri Schiavo, the brain-damaged Florida woman whose family fought for years over whether she would have wanted to be kept alive in a vegetative state.
Then-Florida Gov. Jeb Bush got embroiled in the family’s ordeal, ordering feeding tubes reinserted for Schiavo against her husband’s wishes. The husband ultimately prevailed in a legal battle with Schiavo’s parents, who wanted her kept alive.
In 2008, a year before debate over the Affordable Care Act spiraled into tea-party protests, Congress overwhelmingly passed legislation requiring doctors to discuss issues like living wills with new Medicare enrollees.
That history of bipartisanship dissipated almost instantly when Palin said the provision on end-of-life conversations in Obama’s health care legislation would result in bureaucrats deciding whether sick people get to live. The language was ultimately removed.
Nothing in the discussions approved by Medicare will be focused on cost, but many experts believe if patients truly understood their alternatives, and doctors listened to them, bills would inherently go down.
A landmark report last year from the Institute of Medicine found that few people make their wishes known and too many deaths are filled with breathing machines, feeding tubes, powerful drugs and other treatments that fail to extend life and make its final chapter more painful and unpleasant. The report was called “Dying in America,” and the institute — an independent organization that advises the government — has a section on its website distilling the issues for families.
After the report, Medicare said it would consider a change in policy for 2016.
Supporters say counseling would give patients more control and free families from tortuous decisions. Even so, there are often no simple answers. Patients may want less invasive care if they believe they will soon die, but predicting when death will happen is notoriously inexact. Terminal patients can live for years, potentially complicating a choice of less intensive treatment.
Interested parties will have 60 days to comment on the new regulation before it is finalized.
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