‘We Have to Make a Concerted Effort to Be Less Alienated from Death and Dying’

A conversation with Anita Hannig, author of ‘The Day I Die: The Untold Story of Assisted Dying in America’

By Richard Harris

Like taxes, death is still a certainty. But in America, the end of life isn’t what it used to be.

Today, one in five Americans lives in a state that permits medical aid in dying, sometimes simply called assisted dying. The idea is terminally ill individuals who have six months or less to live can apply for a medically assisted death to limit their suffering. And if they meet the criteria, they can have some say when they will take their last breath.

It’s been nearly 25 years since the country’s first assisted death law — Oregon’s Death With Dignity Act — went into effect. And since then, eight other states — Washington, Vermont, California, Colorado, Hawaii, New Jersey, Maine and New Mexico, as well as Washington, D.C., have enacted their own versions. What all jurisdictions with medical aid in dying have in common is the requirement that the patients must be of sound mind, have less than six months to live and they must be able to self-administer the lethal medication, prescribed by a physician, to end their lives.

Eleven other states have introduced medical aid in dying bills during the 2021-22 legislative session. It’s a growing movement that’s largely under the radar, much as death is in this society.

Assisted death is “not the path of least resistance. For many it’s the path of most resistance.”

In the latest survey by Susquehanna Polling & Research, two out of three voters (67%) said if they “had an incurable, terminal illness, still had a sound mind but less than six months to live and met the legal requirements,” they would want the option of medical aid in dying.

As the baby boomers age, medical aid in dying is expected to be an even bigger issue in the years ahead.

Anita Hannig, associate professor of anthropology at Brandeis University in Waltham, Massachusetts, says assisted death is “not the path of least resistance. For many it’s the path of most resistance.”

Indeed, the assisted dying laws in the ten U.S. jurisdictions are among the most restrictive in countries with such laws. That hasn’t stopped opposition from some religious and right-to-life groups, among others.

For her new book, “The Day I Die: The Untold Story of Assisted Dying in America,” Hannig spent hundreds of hours over five years on the frontlines of assisted dying in the Pacific Northwest, including witnessing several deaths among those who availed themselves of the law.

Next Avenue: You’ve taken a very deep dive into assisted dying in America, a world few families have experienced. As a cultural anthropologist, you’ve gone from researching birth and the beginning of life in Ethiopia to the opposite end of the life cycle. Why the shift?

Anita Hannig: I was showing a film called ‘How to Die in Oregon’ in my Medicine and Religion class at Brandeis. It’s such a lovely documentary about the law in Oregon and about all those assisted dying volunteers who go and help people die. And I was immediately hooked and thought, wow, birth and death are like bookends. You have home births and home deaths. And so I was curious to go over to the other side. I was very surprised by what I found.

You must have a unique perspective on birth and death as an anthropologist studying assisted dying and as a new mother who also lost a child during an earlier pregnancy.

Definitely. We’re so used to thinking about birth and death as opposites when they’re actually very similar. One of the main figures in my book, a former nurse and longtime assisted dying volunteer in Oregon, Derianna Mooney, taught me that birth and death are both sacred transitions — from one state of being to another, from nonbeing into being and being into nonbeing. And culturally we revere one, but we shun the other.

“I think part of the issue is that we have all the technology now, but our ethical and moral compass hasn’t really caught up with how we should use it.”

As a new mother, I can see people’s eyes light up when they watch us stroll by with our oversized pram. There’s so much positive attention. And all of this has to do with the fact that we love the beginning. It holds so much promise.

And yet we’re so afraid of the end. Similar to a birth, people do need help at the end of life. I love when Derianna says, “You’re going to the gate with them and you are letting them go, but you’re nurturing them through the gate.” What a beautiful vision.

One of the vexing issues surrounding death in our country especially is the role high-tech medicine plays in extending life — even when a longer life doesn’t always promise more quality. Is the assisted dying movement a sign that technology is frequently not making our final years better?

Yes. I think part of the issue is that we have all the technology now, but our ethical and moral compass hasn’t really caught up with how we should use it. And it’s not just in the United States. My 87-year-old grandmother, who passed away in Germany in March, underwent radiation for her breast cancer when she was two weeks away from dying. I’m flabbergasted when I think about why we offer this extremely invasive treatment to somebody who is close to dying. Thankfully, she was soon admitted to a beautiful hospice by a lake to spend what became her final days.

I got interested in this topic when a friend’s husband, suffering from Parkinson’s and no longer able to feed himself, was forced to starve himself to death since he lived in Maryland, a state without a medical aid in dying law. For people consigned to such a horrific death, can a doctor truly say they are following the Hippocratic Oath that tells physicians to do no harm?

That’s exactly the conclusion that a lot of doctors who help patients die come to because in that case doing nothing — such as not helping somebody die — is doing harm. Physicians who are at the forefront of assisted dying say their task is to prevent suffering. And how you prevent suffering in many of these cases is to help somebody die. I always come back to this question: Who is telling these patients that they need to hang on? For what? For whom? Sometimes they themselves are ready to go, but they want to stick around for the family or because there’s a societal expectation to fight.

At the beginning of your book, you almost took my breath away when you were helping one of the volunteers opening the capsules of Seconal and pouring powder into a bowl in one room while the patient, Ken, was waiting in the next room to receive the lethal medication. What were your thoughts as you prepared the medicinal mix that you knew would end a man’s life?

It’s a really good question. Anthropologists have a tool in our toolbox called “participant observation.” And that means you’re never just an impartial observer because your presence alone already changes what’s happening in the room. In order to really relate and put ourselves and the reader into the shoes of these people, you have to bring yourself into the situation wholeheartedly and authentically. And often that means becoming a participant in what is happening.

It’s an extreme privilege to be invited into that kind of intimate space. So, it would have felt very off- putting to just be sitting in the corner taking notes. Everybody in the room is carrying this person over the threshold together. And so you just kind of take your cues from what’s happening.

You don’t want to feel like a voyeur?

Exactly. You want to be in the moment and going through all the emotions other people are going through. It’s a different way of being present that allows you to faithfully experience the death alongside the people whose loved one is dying.

But this must have been a difficult moment for you. In your book, you described “a heavy sense of transgression rise up inside” of you as prepared the lethal medication.

You know what I think it is? It’s the feeling of internalizing some of the stigma that we carry and some of the taboo with which we treat death. And so being part of somebody’s death in this participatory way makes you ask, ‘Am I doing something wrong? Am I, in some bizarre way, enabling that person to die?’

But even if I hadn’t been there, things would have gone probably in a very similar way. I think it’s the cultural baggage that we feel around what it means to hasten the end of your life. Everyone there knew this is what Ken wanted. He chose this with one-hundred percent of his cognitive abilities. His wish was to be delivered from this world and you are enabling that transition.

Among the deaths you researched but didn’t witness was that of Louis, who was an outlier. His experience turned into a nightmare for the person who supervised his assisted death. Louis actually woke up after taking the lethal medication. What happened?

“Everybody in the room is carrying this person over the threshold together.”

Medicine is a human art and as an art, is prone to failure. And it just goes back to the ways the laws are written. They insist on self-administration. But when you are limited that way, you’re going to run into a bunch of problems such as people with gastrointestinal issues who can’t quite absorb the medication. And then you have people who can’t physically self-administer, like a lot of folks with ALS or other illnesses that affect their mobility or their hand range or who can’t drink something on their own or push the syringe on their feeding tube.

And people are getting a little more innovative with things like rectal catheters now, but there’s still a requirement that this has to be an act of volition — you have to be the one to push the plunger on your feeding tube or catheter, what have you. And in almost all other countries, you don’t have that requirement. A doctor can administer if you’re unable to administer yourself.

So after immersing yourself in this world of assisted dying for five years, whats your takeaway from this experience?

As a society, we have to make a concerted effort to become less alienated from death and dying. Of course, one could ask how alienated are we when the biggest newspaper in the country, the New York Times, can post images of corpses in Ukraine on its front page? But that doesn’t create closeness or connection. That just creates more fear.

Ideally, I think everybody should have to take a class on death and dying that could cover estates, hospice, and what life-extending procedures there are. In my death and dying class, I talk about people in South Korea who fill an entire gymnasium with coffins and the public comes in and gets inside the coffin to simulate what it would be to die. And they come out of this experience with a totally new zest for life.

This is what contemplating our mortality can do for us. It can take away some of the fear and some of the surprise when a loved one passes away because you will have thought about it in advance. I’m not saying assisted death is the way to go for everyone. We really need to pay more attention to end-of-life issues and prepare for the inevitable and have all of that be less stigmatized.

Book over of "The Day I Die" by Anita Hannig. Next Avenue, medical aid in dying

As the country’s pandemic death toll inches toward one million, has America’s attitude toward death changed at all?

Certainly it’s brought death into the lives of lots of people but not in a way to make them feel more connected to death. Many people weren’t able to see their loved ones in assisted living homes or couldn’t go to the funeral or they weren’t allowed to be present at a nursing home.

When I see the way that we’re tumbling back into life as it was before the pandemic, I don’t know that we’ve really thought critically about death. We just have this big fear-based relationship with death and it’s not lifting the curtain, really. I think people are thrilled to have escaped the pandemic. They see themselves on the other end of that mostly unscathed.

They dodged a bullet?

That’s exactly what it is. But I don’t think it’s made us really contemplate our mortality that much more.  

So what will give you a signal that something has shifted in the American attitude toward death?

That people don’t automatically associate the topic of death with fear. And when people begin to realize what I witnessed and write about in the book — some of the empowerment that can come from determining the end of your life and even some of the joy. I hope I’m not out of line to call it joy. When I think of the deaths I witnessed, they weren’t unambiguously sad. There were also serene and heartfelt moments, some laughter and families felt at ease because their loved one wanted to die and they were helping them.

And those who chose to end their lives wanted their death to resonate beyond themselves and their families. Jean, one of the people whose death I witnessed, unbelievably spent the last few minutes of her life promoting her chosen way to die. I still remember her words:

“There are all these baby boomers who will want a better way to die. Our society doesn’t recognize that yet. They will someday.”

Complete Article HERE!

Doctor accused of killing 14 patients with fentanyl acquitted of murder

William Husel hugs his wife, Mariah Baird, after the doctor was found not guilty on 14 counts of murder in connection with fentanyl overdose deaths of former patients on April 20 in Columbus, Ohio.

By Brittany Shammas & Timothy Bella

William Husel, an Ohio doctor who was accused of killing 14 patients with what prosecutors described as “wildly excessive” doses of fentanyl between 2015 and 2018, was acquitted on all counts of murder Wednesday, concluding one of the most significant murder cases of its kind against a health-care professional.

Husel, a onetime physician of the year trained at the Cleveland Clinic, faced one count of murder for each of the 14 critically ill patients he was accused of killing. The jury deliberated for seven days before finding him not guilty on all 14 counts in what was one of the largest murder trials in Ohio history.

He had been charged with causing or hastening their deaths amid a period of lax oversight of fentanyl at Mount Carmel West, a Catholic hospital in Columbus. Husel would have faced life in prison with just one guilty verdict.

While the synthetic opioid is significantly more powerful than morphine and has wreaked havoc on American streets, it can provide pain relief in medical settings that is crucial to end-of-life care. The alleged victims in the Ohio case suffered critical medical conditions including overdoses, cancer, strokes and internal bleeding. Prosecutors acknowledged that all were being kept alive on ventilators and that many of them were dying.

“In truth, William Husel was an innocent man, and thank goodness the justice system prevailed,” Jose Baez, one of Husel’s defense attorneys, told reporters.

The 46-year-old’s acquittal came after a two-month trial that triggered a debate on end-of-life medical care. Husel and Baez argued in the trial that the doctor offered comfort care for dying patients and was not trying to kill them. They pointed out that the doctor’s actions did not occur in secret — nurses were the ones to administer the doses — and alleged that hospital officials made Husel the villain after realizing the systemic failures at play. The fallout over the allegations at Mount Carmel West had repercussions: the firing of 23 employees; the resignation of the hospital’s chief executive, chief clinical officer and chief pharmacy officer; and Medicare and Medicaid funding for the institution was put in jeopardy.

But Franklin County prosecutors alleged that Husel gave patients amounts of the opioid far beyond the norm. He ordered 1,000 micrograms of fentanyl for multiple patients — about 10 times the recommended dosage, according to prosecutors. One of the patients, 82-year-old Melissa Penix, was given 2,000 micrograms of fentanyl — 20 vials of it, all at once. The amount of fentanyl given to her, which was about 20 times the recommended dosage, depleted the entire supply of the medication available in the ICU that night, Franklin County Assistant Prosecutor David Zeyen told jurors.

Joel Zivot, an associate professor of anesthesiology and surgery at Emory University and the sole witness called by Husel’s defense, told The Washington Post that he was relieved the jury determined that disease, not fentanyl, caused the 14 deaths.

“Physicians intend to provide comfort at the end of a person’s life, and the idea that the intent was murder simply by the action by giving someone pain control was unprecedented and ultimately shown to be a false accusation,” Zivot said.

The Franklin County Prosecutor’s Office released a statement commending the prosecution and defense for their work, adding that the office accepted the jury’s finding Husel not guilty.

“The Jury after review of all the evidence was not convinced beyond a reasonable doubt that William Husel was guilty of any charges submitted to them,” the prosecutor’s office said in a statement. “We accept the jury verdict.”

The case came to light in the fall of 2018 when, Mount Carmel West has said, pharmacists voiced concerns about doses ordered by Husel, an anesthesiologist who had been employed at the hospital about five years and worked on the skeleton crew of overnight intensive care. He was well liked in the ICU and known for his willingness to teach those who worked alongside him.

In total, at least 35 people may have been given excessive doses, the hospital said after a review. All of them died; the hospital said five might have had a chance to improve. Officials alerted police, and Husel was charged in June 2019 with 25 counts of murder. Prosecutors dropped 11 of the charges.

During closing arguments in the trial this month, Zeyen argued that even if the patients were dying and Husel thought he was acting in their best interest, killing them still constitutes as a crime.

“That is what you do to sick animals. That’s fine in veterinary science,” Zeyen said. “That is not fine in the ICU at Mount Carmel.”

Baez responded by referring to Husel’s pledging to provide comfort to the patients, noting that the doctor had much to lose.

“Why would this man risk his family, his career, 17 years of trying to be a doctor, every single thing he has worked for, to hasten someone’s death or to kill them?” Baez asked during closing arguments.

Zivot told The Post that he reviewed each of the cases and concluded that Husel offered the kind of care that any doctor would have provided for end-of-life treatment.

“Dr. Husel did the thing that doctors do in that he provided some fentanyl for the purpose of mitigating what we imagine to be the pain of dying, and that’s it,” he said. “We cannot know what it feels like to die; we can only imagine it. We fear it, and we are concerned about that. If we can’t stop someone from dying, at least we can reduce the pain associated with dying.”

When Common Pleas Court Judge Michael Holbrook read each verdict of not guilty, Husel’s wife, Mariah Baird, watched and smiled before hugging her sister, reported the Columbus Dispatch. After all 14 counts came back as not guilty, Husel wiped away tears.

Even with his acquittal in the murder trial, Husel still faces more than 10 lawsuits from the families of patients. Several of the families have settled lawsuits worth about $13.5 million, according to NBC News.

Baez emphasized to reporters that he felt “terrible for all of the patients’ families suffering again.” But, he said, he hoped they took comfort knowing that a jury concluded that it was their loved ones’ critical illnesses, and not the opioid, that resulted in their deaths.

“Hopefully they take solace that their loved ones’ last moments were in peace and not as a result of a doctor being afraid to make them comfortable,” he said

Complete Article HERE!

Choosing death during a life with debilitating disease

By SHEILA HAGAR

Donna Coffeen remembers hearing about Washington state’s Death with Dignity Act when it passed in 2008.

That legislation allows terminally ill adults who want to end their life ask for lethal doses of medication from a physician.

Eight states, including Oregon, have right-to-die laws.

Coffeen was especially alert to the matter. Her husband, Jon, had been diagnosed with Parkinson’s disease in 2003.

Both Coffeens researched Death with Dignity and were pleased with their findings at first, she recalled.

Parkinson’s is a progressive nervous system disorder that affects movement. The symptoms start gradually, sometimes with a barely noticeable tremor in just one hand. Tremors are common, and so is stiffness or slowing down, according to the Mayo Clinic.

Those issues contributed to why the Death with Dignity act would fail Jon, who could no longer swallow by himself by the time he died last year.

Fatal doses of medication must be self-administered under the law.

Donna, a lifelong educator, wants others to know more about physician-assisted death and what changes would benefit others in her husband’s situation. Particularly in an area like Walla Walla, with fewer health care options, she said.

The Coffeens had been sure of two things for the past several years: Parkinson’s would take Jon’s life too soon, and he didn’t want to end up in a wheelchair or dependent on a caregiver, Donna said.

For better or worse

The couple met while attending Walla Walla University. Their engagement photo, a study of the 1970s in hair and wardrobe, shows two faces glowing with contentment. They married March 19, 1978, in Donna’s hometown of Miles City, Mont.

Jon had arrived in the Walla Walla Valley at age 12, when his family bought 35 acres of farmland along Old Milton Highway, south of College Place. While he and Donna were teaching middle school at Milton Adventist School, Jon built a custom home on a section of that land, Donna said.

“He would get up at 5, come build on this house, teach all day, then build on it at night.”

Jon craved activity. For 41 summers he fished commercially in Alaska. He built fiberglass boats. He loved to hunt and hike and camp. He served with Walla Walla Fire District 4 for more than 20 years, his wife said.

It seemed especially cruel when Jon got the diagnosis of Parkinson’s at age 49. By then, some signs had been present for a few years, such as unexplained fatigue and pain.

The average onset age of the disease is 60, according to Parkinson’s resources.

Donna said Jon was determined to stay healthy as long as possible, despite the diagnosis. Their sons, Phillip and Aaron, were just entering adulthood, and the parents were becoming more free to have adventures.

“He fought as hard as anyone could,” Donna recalled.

“He had nine surgeries in 11 years. He walked every day. He exercised. ”

In 2009, Jon underwent a procedure known as DBS, or deep brain stimulation. A surgeon implants a device similar to a heart pacemaker in the brain. The neurotransmitter delivers electrical stimulation to targeted areas in the brain, blocking the abnormal nerve signals that cause tremors and other Parkinson’s symptoms, said Sherri Woodbridge in writing for Parkinson’s News Today.

Doing so added five or six years of “high quality” life to her husband’s timeline, even letting him captain his fishing boat another three summers, Donna said.

“It brought him back to a level of functioning … But it’s not a cure. The disease will progress past what the surgery will do for you.”

The Coffeen family could tell when Jon’s brain intervention had passed its efficacy. He gave up fishing and firefighting in the same week and eventually began falling at home. The travel they loved stopped. Jon’s exhaustion and pain enveloped everything.

Cannabis use helped a lot. “This was a man who’d never had a drink in his life,” Donna said with a laugh.

Looking back, she could see her husband was beginning to plan for the end of his life.

“I think he wanted to spare me. He didn’t want to use up our money, and he didn’t want to be in a nursing home.”

When Jon began worrying he was developing cognitive issues, “that was his line in the sand,” Donna noted.

Out of options

In September 2018, Jon mowed the lawn one day and entered Providence St. Mary Medical Center for foot surgery the next.

He ended up in rehabilitation care at a nursing home for about 10 days, his son Phillip said.

It was there his dad’s Parkinson’s symptoms worsened, likely from stress, he added.

Those increased symptoms sent Jon back to the hospital, where he spoke little and stopped eating, Donna said.

“‘This Parkinson’s is coming down on me like a freight train, and I won’t be able to make decisions soon,’ he told me. But I thought he was coming home. I bought a wheelchair and a wheelchair lift just a few days before we figured out what he was doing.”

What Jon was doing is called VSED — Voluntary Stopping Eating and Drinking. Because he could no longer effectively swallow, Jon could not drink a fatal potion of prescribed medicine, nor was that allowable at the Catholic-based St. Mary.

He was too sick to go to another hospital, Donna said.

“He was out of options.”

VSED is an intentional decision to stop taking liquids or nutrition. According to the National Institute of Health, some people at the end of their lives choose this over physician-assisted death to give them more time for family interaction and reflection. In a case of terminal illness, VSED is not considered suicide. Some patients side-step the medical system altogether when choosing this action.

Some accounts say fatal dehydration and starvation are a hard way to end life, but that wasn’t their experience, Donna said.

In any case, she’d already agreed to follow Jon’s wishes.

“He told me, ‘Don’t you dare give me water.’ He was worried about delirium but that never happened,” she said.

“It took awhile for my heart to catch up with my brain. But I had no urge to talk him out of VSED. I did some grieving in front of him, but I would never ask him not to.”

Hospital staff knew what was happening when Donna and her sons brought Jon home the day after he began the VSED process, she said.

“No one actively stopped us, but no one could officially help us. It’s a Catholic hospital; we knew it would be that way.”

Few people understand the real loss of Walla Walla General Hospital or limited medical care choices until it comes to times like these, Donna added.

Going forward

Friends continued to be a constant support, and the family made sure all home visitors were either on board with Jon’s decision or kept their thoughts to themselves.

While most VSED users die in about seven days, Jon took 12, she said, attributing that to his age.

Jon Coffeen died Oct. 7, 2018, surrounded by his family.

Donna said she believes her husband wanted to go while his wife could still have an active life.

“I miss him, but he would not be happy if I quit living life to the fullest … In the last year it was like living with a ghost,” she said.

Advances in medical technology are wonderful, and the Coffeens took advantage of those while it made sense.

“But many people prolong things, too. We were right on the edge of hell.”

She might choose the same, given Jon’s shoes to walk in, Donna added softly.

“Our family considers him a hero for doing this.”

After 40 years of marriage, it’s hard not to feel cheated by Parkinson’s, she said, noting Jon’s parents lived into their 90s.

But Donna is learning to live alone. Toby, the “mostly” shih tzu puppy, joined her not long after Jon died and provides a reason for routine, she said, offering the bouncing, barking dog a few Cheerios during the interview.

“We’re still working on manners.”

At 63, Donna said she’ll retire soon. She believes a mission is ahead for her and suspects it’s bringing awareness of end-of-life matters.

“I strongly feel something needs to be done. I just don’t know the next step yet,” she said.

“Maybe it’s time to take another look at the law.”

Complete Article HERE!

Struggling to die in peace:

A family fights to turn off a pacemaker

In 2010, the American Heart Association, American College of Cardiology, the American Geriatrics Society and other prominent groups issued a statement indicating that the deactivation of a pacemaker, an implantable device used to speed up slow heart beats, is ethically permissible.

By Jennifer Friedlin

For the past month, my mother and I have been advocating for the deactivation of my father’s pacemaker. Yet despite my parents having taken every measure to ensure that they would control the ends of their lives, two months since a severe stroke destroyed whatever quality of life my father, who was already suffering from advanced dementia, had left, his heart continues to beat against my family’s wishes.

In 2010, the American Heart Association, American College of Cardiology, the American Geriatrics Society and other prominent groups issued a statement indicating that the deactivation of a pacemaker, an implantable device used to speed up slow heart beats, is ethically permissible. Reaffirmed last year, the statement says, “Legally, carrying out a request to withdraw life-sustaining treatment is neither physician-assisted suicide nor euthanasia.”

Nevertheless, the team of medical professionals at Parker Jewish Institute for Health Care and Rehabilitation has given us the runaround. Most recently, my mother and I met with my father’s team of medical professionals to discuss moving my father into hospice as well as deactivating the pacemaker so that my father could live out his days naturally. During the course of the meeting, my mother, who is my father’s proxy, made clear that this would be my father’s wish.

According to the law, the request is my mother’s prerogative. In 1990, in Cruzan vs. Director, Missouri Department of Health, the Supreme Court ruled that a competent patient could refuse life-sustaining treatments, including nutrition and hydration. This case gave rise to advance directives so that a proxy could carry out the patient’s will. In a later case, the Court affirmed the right of competent patients to refuse therapy.

The medical team agreed to hospice, but has so far refused to carry out the request to deactivate the pacemaker. We have had several long conversations with the medical team, and, while they seem to agree with our desire to give my father a dignified end, they offer confusing explanations as to why they will not carry out my dad’s wishes.

At one point, a staff member told me that because a pacemaker does not prolong life, we should leave it. But my father’s pacemaker is working 53% of the time to correct his condition, known as bradycardia, which can result in heart failure. I fail to see how this device is not prolonging my father’s life or, at the very least, interrupting the possibility for his natural demise.

We are certainly not the first family to confront the medical community’s refusal to deactivate a pacemaker. Katy Butler, author of “The Art of Dying Well,” has written extensively about her efforts to give her father the death he wanted by deactivating his pacemaker. Butler also uncovered other horrors, such as cardiologists recommending pacemakers for elderly people with advanced dementia.

Much of the motivation, Butler noted, seemed to stem from the financial rewards of treating people, even the terminally ill. Simply put there’s no money in death. And yet in its current design, at $450 a day for room and board alone, institutions like the Parker Institute rake in millions annually from people whose lives are being maintained artificially. The medical system could quite literally bankrupt healthy family members to keep a dying one alive.

Although estimates vary, each year approximately 400,000 people — half over age 75 — get implantable cardiac devices, including pacemakers. Primary care doctors, cardiologists, and elder care attorneys should inform people about how these devices can affect their end of life and encourage them to include their wishes in advance directives.

Yet, even if they do, they may hit the same wall of refusal my family has faced. It seems that despite the legal rulings and the ethicists’ writings, doctors are committed to keeping pacemakers ticking.

It’s unfair to the terminally ill and their families that this view prevails. The refusal to deactivate means the sick family member is denied a dignified death, while the need for constant advocacy leaves family members feeling like they are making an unseemly demand.

As the debate about healthcare builds in the run up to the 2020 presidential election, I hope that the candidates will discuss reforms to improve end of life care. There should be dignity in death for the terminally ill and no healthy person should be forced into bankruptcy to keep a loved one alive against his or her will. There are certain people we should spare no expense to keep alive, in our family’s opinion my father is not one of them.

Complete Article HERE!

Speak freely about realities of death, experts urge

Taboos around death and dying are increasing the risk of elderly patients “on their dying journey” being subjected to unwanted and invasive medical procedures against their wishes, experts say.

By Lucy Stone

Associate Professor Magnolia Cardona, from the Gold Coast’s Bond University, has led a PhD study into the use of rapid response system treatments on elderly hospital patients nearing end of life.

Professor Cardona said the research, published in the Joint Commission Journal on Quality and Public Safety, studied the files of more than 700 patients who received calls for medical emergency teams during hospitalisation at a large Sydney teaching hospital.

A medical emergency team usually consists of two or three specialists from the intensive care unit focused on maintaining life when a patient is in a hospital ward.

The research further focused on patients aged 80 and over, and found that 40 per cent were subjected to invasive procedures such as intubation, intensive monitoring, intravenous medications, transplants and resuscitation attempts.

Ten per cent of those patients already had medical orders in place limiting treatment, or requesting do-not-resuscitate.

“Those orders … are usually issued by their doctors in consultation with families,” Professor Cardona said.

Professor Cardona said the research showed the conflict between increasingly rapid medical advances, public perception of the capabilities of medical experts to revive or prolong life, and the emotive issue of death.

The findings were similar to those of 2017 studies conducted in Europe, but Professor Cardona said the Australian researchers had expected to find a smaller percentage of such incidents.

The research found that elderly patients in their last year of life were frequent users of ambulance and hospital services, including intensive care units, and that health professionals often felt under pressure to administer “aggressive” treatments.

“Health professionals do not always fully discuss a prognosis with families, or may lack the confidence to discuss patients’ preferences for care and treatment at the end of life,” the research said.

“They may decide to continue intensive treatment based on concerns about the family’s legal or emotional reactions, or in an attempt to avoid an in-hospital death, generally perceived as a ‘failure’.”

“Often these frequently heroic medical interventions do not improve patient survival and instead prolong suffering and adversely affect the quality of death.”

The study found that while patients under 80 years of age may benefit from such aggressive techniques, patients over 80 were less likely to benefit.

Professor Cardona also said it was critical that families and elderly people, or people with terminal illnesses, had open conversations about the decisions ahead, and wrote on paper their personal wishes, or appointed someone trusted as their medical representative.

Due to techniques such as CPR being treated as a cure-all on television shows and movies, Professor Cardona said the public often had some misconceptions about the safety and appropriateness of such techniques, particularly for elderly people.

She said the research would hopefully encourage both families and medical professionals to have fresh conversations about patient needs and values, and ensure the wishes of elderly patients were respected as they neared the end of life.

Professor Cardona said she hoped medical professionals could also think critically about the “do no harm” principle when faced with patients facing death of natural causes.

“The conclusion of the study that perhaps clinicians need to take a step back when they identify these flags of imminent death and offer a different alternative of management,” she said.

“That is the pathway of care of comfort care, and that includes giving the patient pain relief, other symptom control, psychosocial support and grief counselling for the families.

“And all of these of course preceded by an honest conversation with the patient and family about the poor prognosis, the inevitability of death and the fact that not every death should be considered a failure.

“Death is just a natural part of the life cycle.”

Complete Article HERE!

Your Body is a Teeming Battleground

It’s time to rethink the quest to control aging, death, and disease—and the fear of mortality that fuels it.

By Barbara Ehrenreich

[I] went to medical school, at least in part, to get to know death and perhaps to make my peace with it. So did many of my doctor friends, as I would find out. One day—usually when you’re young, though sometimes later—the thought hits you: You really are going to die. That moment is shocking, frightening, terrible. You try to pretend it hasn’t happened (it’s only a thought, after all), and you go about your business, worrying about this or that, until the day you put your hand to your neck—in the shower, say—and … What is that? Those hard lumps that you know, at first touch, should not be there? But there they are, and they mean death. Your death, and you can’t pretend anymore.

I never wanted to be surprised that way, and I thought that if I became a doctor and saw a lot of death, I might get used to it; it wouldn’t surprise me, and I could learn to live with it. My strategy worked pretty well. Over the decades, from all my patients, I learned that I would be well until I got sick and that although I could do some things to delay the inevitable a bit, whatever control I had was limited. I learned that I had to live as if I would die tomorrow and at the same time as if I would live forever. Meanwhile, I watched as what had been called “medical care”—that is, treating the sick—turned into “health care,” keeping people healthy, at an ever-rising cost.

In her new book, Barbara Ehrenreich ventures into the fast-growing literature on aging, disease, and death, tracing her own disaffection with a medical and social culture unable to face mortality. She argues that what “makes death such an intolerable prospect” is our belief in a reductionist science that promises something it cannot deliver—ultimate control over our bodies. The time has come to rethink our need for such mastery, she urges, and reconcile ourselves to the idea that it may not be possible.

Ehrenreich is well equipped for her mission; she has a doctorate in biology and years of social and political work behind her, as well as decades of writing. I first discovered her in medical school, when I read her early book Witches, Midwives, and Nurses: A History of Women Healers (1973). From it I learned that my small group of nine women in the otherwise male class of ’77 belonged to a long, if forgotten, tradition. I also learned that social progress is not always an upward-trending line. The author of more than a dozen books, Ehrenreich has a reputation for chronicling cultural shifts before others notice them. She delights in confronting entrenched assumptions, popular delusions, grandiose ambitions—and in teasing out their unexpected consequences.

Often she incorporates firsthand experience into her analysis. For her best-known book, Nickel and Dimed: On (Not) Getting By in America (2001), she spent a year working at unskilled jobs. In Living With a Wild God (2014), she recounted her own spiritual epiphanies in adolescence and her struggle, as a determined atheist, to understand her “furious encounter with a living substance that was coming at me through all things at once.” Before all that, in 2000, she had been diagnosed with breast cancer and begun paying special attention to surprising new science about cancer, cells, and our immune system. Now 76, Ehrenreich explores that science in Natural Causes: An Epidemic of Wellness, the Certainty of Dying, and Killing Ourselves to Live Longer. Once again, she is swept up by big questions. Not least among them is “whether the natural world is dead or in some sense alive” and behaving in unpredicted and unpredictable ways that have much to tell us about our approach to mortality.

She starts by looking at the many preventive medical procedures we are encouraged, even badgered, to undergo—those regular physical exams, colonoscopies, blood tests, mammograms. She had always pretty much done what doctors advised (she underwent chemotherapy), figuring that it made sense to treat disease before illness overwhelmed the body. But after watching many fitness-obsessed people die early, and realizing that she herself is now “old enough to die,” she questions that premise. Where is the evidence that all the effort at prevention saves lives or delays death?

It’s hard to find, she discovers. In people who have a strong family history of heart disease, treating high cholesterol does decrease mortality, on average. But for those who don’t have that predisposition, it doesn’t. Colonoscopies have not been proved more effective at reducing deaths from colon cancer than other, cheaper, less-invasive tests. Sometimes procedures cause more trouble than they prevent. Mammograms, for instance, detect tumors that might never be fatal, and can lead to over-treatment, which carries its own risks. The insight is counterintuitive—although finding diseases early on should prolong lives, the screenings we undergo don’t seem to lower mortality rates overall—and Ehrenreich decides that she will no longer get most preventive care.

She is just as clear-eyed about other approaches to delaying our decay—exercise, diet, meditation. Though she became a “fitness devotee” herself in middle age, she finds symptoms of cultural malaise rather than health benefits in the fitness and diet obsessions of the past 40 years. Wellness programs do little to reduce companies’ immediate health-care costs, and the pursuit of fitness, Ehrenreich argues, is often simply one more “class cue.” Workouts easily become just that—work, another demand for self-discipline, competition, and control. Ironically, when she reached her 70s, her knees began giving her trouble not from age-appropriate arthritis but from overexertion.

[T]urning from her critique of preventive medicine and fitness culture as death-postponement strategies, Ehrenreich is even more unsettled by research indicating that our immune system is not the magical “protective cloak” she learned about in graduate school. What really gets her rethinking her scientific beliefs is the evolving story of the macrophage—the specialized white blood cell that she always thought of as her good shepherd “through the valley of the shadow of death.”

Macrophages have traditionally been understood as one of our crucial first-line defenses against disease. They are found throughout our body—in our bones, brain, lymph nodes, lungs, and breasts—and circulate in our blood. They look like the amoebas we learned about in high school, those slippery, one-celled, independent creatures that move by stretching out and contracting, and eat by wrapping themselves around their prey, invaginating and absorbing it. The usual story went like this: Whenever macrophages find threats to our well-being in our midst—bacteria, viruses, fungi, or cancer cells—they kill them and eat them by engulfing and absorbing them. Ehrenreich assumed that keeping her immune system—and valiant macrophages—strong through exercise, diet, and positive thoughts was the key to not getting sick, not getting cancer, not getting old.

But research around the turn of the millennium suggested a different view. Macrophages do not always kill our cancer cells; sometimes they even help them grow and spread. They escort certain cancer cells through the tight walls of our blood vessels, and protect them as they circulate in our bloodstream, looking for a congenial new home. When such a site is found—in a bone or breast, liver or lung—macrophages then support those cancer cells as they mature into the metastases that will go on to kill us.

Scientists are now discovering that the macrophage is as much wolf as shepherd in other diseases as well. It may play a role in auto-immune disorders, and even in the usual afflictions of aging—heart attacks, strokes, arthritis. We thought we knew the causes of those (cholesterol, cigarettes, inactivity) and therefore the recourse (diet, abstinence, exercise); but now it appears that inflammation, caused in large part by our macrophages, may be a trigger. Ehrenreich ponders the heretical question: Can it be that instead of working to keep our immune system healthy, we should all along have been doing the opposite?

[E]hrenreich is not, however, an apostle of unwellness, and Natural Causes is not a how-to book. Instead she focuses on the conceptual and “deep moral reverberations” of the discovery that our immune system can aid and abet a “cellular rebellion against the entire organism.” What if our convenient “holistic, utopian” view of the “mindbody” as a “well-ordered mechanism”—kept in harmony by positive thinking and solicitous tending—is wrong?

Ehrenreich proves a fascinating guide to the science suggesting that our cells, like the macrophages that sometimes destroy and sometimes defend, can act unpredictably and yet not randomly. It is almost as if our cells can choose when and how to behave—unregulated by any deterministic mechanism. But that would mean they have “agency, or the ability to initiate an action,” as she puts it. And what would that imply? If macrophages are actually deciding which cancer cells to destroy or to preserve, “maybe, crazy as it sounds, they are not following any kind of ‘instructions,’ but doing what they feel like doing.”Researchers are now finding this same agency everywhere, Ehrenreich reports—in fruit flies; in viruses; in atoms, electrons, and photons. Such discoveries must mean that agency, the capacity for making decisions—electrons jumping up a quantum level or not, photons passing through this hole in a screen rather than another—is not the rare, and human, prerogative we once thought.

Ehrenreich detects a paradigm shift in the making, away from holism and toward “a biology based on conflict within the body and carried on by the body’s own cells as they compete for space and food and oxygen.” This vision of the body as an embattled “confederation of parts”—the opposite of a coherent whole, subject to command and control—is “dystopian,” she writes. And yet it has liberating, humbling implications. “If there is a lesson here,” she proposes, it’s that “we are not the sole authors of our destinies or of anything else.” Of course, the struggle to win the battles within our body may be one we’ll never be able to resist. Who knows? Perhaps we’ll devise high-tech ways to induce, or persuade, our traitorous immune cells to cooperate with our health. But whatever technological miracles appear in our future, Ehrenreich hopes we can come to accept that the ultimate outcome will be, as it has always been, out of our control.

Researchers are now finding this same agency everywhere, Ehrenreich reports—in fruit flies; in viruses; in atoms, electrons, and photons. Such discoveries must mean that agency, the capacity for making decisions—electrons jumping up a quantum level or not, photons passing through this hole in a screen rather than another—is not the rare, and human, prerogative we once thought.

Ehrenreich detects a paradigm shift in the making, away from holism and toward “a biology based on conflict within the body and carried on by the body’s own cells as they compete for space and food and oxygen.” This vision of the body as an embattled “confederation of parts”—the opposite of a coherent whole, subject to command and control—is “dystopian,” she writes. And yet it has liberating, humbling implications. “If there is a lesson here,” she proposes, it’s that “we are not the sole authors of our destinies or of anything else.” Of course, the struggle to win the battles within our body may be one we’ll never be able to resist. Who knows? Perhaps we’ll devise high-tech ways to induce, or persuade, our traitorous immune cells to cooperate with our health. But whatever technological miracles appear in our future, Ehrenreich hopes we can come to accept that the ultimate outcome will be, as it has always been, out of our control.

No, because I’ve noticed, in my life as a doctor, that the truism is true: People die the way they’ve lived—even the demented and even, somehow, the brain-dead. The brave die bravely; the curious, with curiosity; the optimistic, optimistically. Those who are by nature accepters, accept; those who by nature fight for control die fighting for control, and Ehrenreich is a fighter.

Yes, because I’ve also noticed that everyone I’ve seen die does come to accept the inevitable loss of control at his or her finally unevadable death. Usually that happens over weeks or months, sometimes over years; occasionally it happens over days, hours, or even minutes. This acceptance is perhaps as developmentally determined as childhood, adolescence, adulthood, and old age. At the end, something magical appears to occur—something beautiful, something Other—that seems to heal the spirit, allay all fear, and settle, finally, the struggle for control.

Complete Article HERE!

At the End of Life, a Way to Go Gentle

By

[W]hile confronting the prospect of death, people like me — grappling with a diagnosis of advanced cancer — often consider what sort of care they want and how to say goodbye. Given the delicate negotiations in which the dying need to engage, do intensive care physicians with their draconian interventions act like proverbial bulls in a china shop? My fear of pointless end-of-life treatments, performed while I was in no condition to reject them, escalated when I read Dr. Jessica Nutik Zitter’s book, “Extreme Measures: Finding a Better Path to the End of Life.”

Dr. Jessica Nutik Zitter

Dr. Zitter confronts the sort of scenario that haunts me because she works in specialties that are sometimes seen as contradictory: pulmonary/critical care and palliative care.

In her new book, she refers to the usual intensive care unit approach as the “end-of-life conveyor belt.” She argues that palliative care methods should be used to slow down and derail the typical destructive I.C.U. approach that often torments people it cannot heal.

Over the past few years, quite a few studies have indicated that physicians are less likely than the general population to receive intensive care before death. Many doctors choose a do-not-resuscitate status. Dr. Zitter highlights the insight upon which her colleagues base their end-of-life decisions.

According to Dr. Zitter, even what are intended to be temporary intensive care measures can put a patient on that conveyor belt to anguish and isolation. She writes of breathing machines, feeding tubes, cardiac resuscitation, catheters, dialysis and a miserable existence prolonged within long-term acute care facilities. In an account of the evolution of her own ideas about doctoring, she also explains why it remains so difficult to change intensive care units so they can better serve the terminally ill.

“Extreme Measures” analyzes a complex cluster of suspect but ingrained attitudes that bolster hyperaggressive methods. Medical training fosters a heroic model of saving lives at any cost. American can-do optimism assumes all problems can and should be solved. Both doctors and patients tend to subscribe to a “more is better” philosophy. If technology exists, surely it should be used. Physicians’ fears of litigation plays a part, as do patients’ fantasies of perpetual life. For too many, death remains unthinkable and unspeakable.

One of Dr. Zitter’s compelling patient narratives teaches a clear-cut lesson. It involves an 800-pound man “too large to fit into the CT scanner,” but “too unstable to be transported to the nearby zoo’s CT scanner.” Surgery would therefore be impossible. The patient, a 39-year-old she calls Charles, is bleeding from his intestinal tract, his heart is exhibiting erratic behavior, his kidneys have failed and his liver is foundering. Yet he and his relatives want the doctors “to do everything.”

Although Dr. Zitter tries to explain to Charles and his family that chest compressions would break his ribs and electric shocks would burn his skin, they insist on “a full-court-press resuscitation attempt when he died.” To Dr. Zitter, “Running a code on this dying man felt… akin to punching him in the face and would probably have had the same utility.” Honoring his wishes would require breaking the oath: “First, do no harm.”

Other case histories in “Extreme Measures” are more troubling because their moral implications are less obvious. After a dramatic brain bleed from a major clot, a 45-year-old she calls George faces an operation that cannot return him to who he had been. His wife wants to know what Dr. Zitter would do if he were her husband. She explains that her husband would accept paralysis if he could remain communicative with her and their children at home.

Although Dr. Zitter fears that the surgeons who operated on George never broached the topic of his quality of life after surgery, she is heartened upon his return to the I.C.U.: He gives a thumbs-up. “What if, as a result of our talk, his wife had not consented to the surgery? Would I have been his unwitting killer?” This moment of self-doubt is followed by another turn of the screw. When Dr. Zitter later phones George’s wife, she says: “I am a single mother, but with another angry child.”

“Extreme Measures” includes a number of stories that explore the difficulties of talking about the subject of death with dysfunctional families, wracked by depression or feuds, and across racial, religious and ethnic divides. Often and to her credit, Dr. Zitter finds herself baffled, unsure of how to balance cultural priorities, human needs and medical possibilities. Throughout, she struggles personally and professionally to redefine common responses to terminal conditions.

In place of hope for recovery, Dr. Zitter emphasizes “the miracle of time at home, of pain management, of improved quality of life. These are all concepts I have seen families embrace in place of survival — the only concept of hope previously imagined.” And to people refusing “to play God” by withdrawing a breathing tube, she asks whether “they were playing God by keeping [a relative] alive when her body was actively dying.”

For readers who wish to avoid the end-of-life conveyor belt, Dr. Zitter concludes “Extreme Measures” with some practical advice on, for example, procuring a Physician Order for Life-Sustaining Treatment (POLST), a legal directive that emergency responders, paramedics and emergency room doctors are supposed to follow (but sometimes don’t, as Paula Span reported in The Times earlier this week).

Without this sort of documentation of end-of-life wishes, Dr. Zitter writes, a 90-year-old with metastasized prostate cancer ended up paralyzed and tethered to machines after cardiac arrests. “Our well-intentioned resuscitative efforts had crushed his cancer-weakened neck bones, rendering him quadriplegic.”

Passionately and poignantly, Dr. Zitter reminds us that “conveyor belts, regardless of their destination, are not meant for human beings.” Sometimes less is more.

Complete Article HERE!