Why we shouldn’t fear dying alone, or monothanatophobia


The sunrise burns off the morning mist over the remains of trenches in the Newfoundland Memorial Park at Beaumont Hamel on November 09, 2018 in Albert, France.

by Deirdre Pike

Despite growing up in a death-denying culture, place and time in Canada, pretty long past the days where dead bodies were openly displayed and waked at a family home instead of a funeral home, I have come as far as my 57th year (starting this week) with an openness to conversations about death and dying not normally heard among my peers.

There are many experiences that may have contributed to this. Perhaps being born in November, the Month of the Dead, just two days after Remembrance Day, had an impact. Being named after Ireland’s Deirdre of the Sorrows (not intentionally, my mom assures me) who is said to have died by suicide, perhaps by having her head smashed on a rock by the passing royal chariot (nice touch), may have played a part in my ability to banter about death more freely than others.

Becoming a Catholic, when I was 15, introduced me to ways of ritualizing death and praying for the dead just in time to help me cope with the deaths of seven of my high school peers in three separate car accidents and my stepbrother’s death by suicide a year later.

I also credit my love of excellent rock music for giving me a healthy outlook on death. Take Pink Floyd, for instance.

“And I am not frightened of dying, any time will do, I don’t mind. Why should I be frightened of dying? There’s no reason for it, you’ve gotta go sometime.”

Lying in bed (just like Brian Wilson did) as a teenager, falling asleep, high, with giant headphones blasting these lyrics into my brain, coupled with Trooper’s, “We’re here for a good time, not a long time,” has pretty much described my approach to death, and therefore life, or my approach to life, and therefore death.

It’s that approach, 14 years of parish ministry and more that I have been bringing to what’s called a “Social Innovation Lab.” In this case, the laboratory includes 25 or so palliative care clinicians, social activists, consumers, policy and system leaders, health care leaders and change agents from across Canada to concentrate for six solid days on one question: “How can we change the culture of our health system so the palliative approach, which creates a truly person-centred system, becomes the norm across the whole system?”

This “Palliative Care and Complexity Science Laboratory” is what brought me to be sitting in a circle of a dozen or so residents from a local seniors’ apartment building with three palliative care doctors, discussing monothanatophobia — the fear of dying alone. Although the word itself was brand new to me and all of the people who accepted our invitation to come and discuss it, the concept wasn’t.

We chose our topic after reading about the man who died alone in Hamilton’s social housing recently and went undiscovered for a couple of days before a woman below found some of his remains leaking into her apartment. Nobody wants that to be the story of their last days alive — or dead — on Earth.

There is strong evidence to show why we need to be more intentional about building community now and in the days ahead. Data about living situations from the 2016 Canadian census show for the first time that the number of one-person households has surpassed all other types of living situations. More than a quarter of all households were people living alone.

Applying the principles of palliative care means having conversations about living, not dying. It’s more than making sure community exists to support people in their final days of life. It’s also making sure people are connected while they’re living in a way that respects privacy yet decreases social isolation so no one dies alone.

One great read I recommend on the topic of death and dying is “Talking About Death Won’t Kill You,” by Dr. Kathy Kortes-Miller.

With an essential chapter for anyone on social media called, “Posting, Tweeting and Texting: Dying in a Digital World,” I urge you to make this a holiday gift to your family so you can “out” the conversation of death and dying to make it, as Kortes-Miller says, a logical extension of our living.”

Complete Article HERE!

Homeless and Dying in America

Facing the End of Life Alone

By Betty R. Ferrell, PhD, RN

As Homeless Persons Near the End of Life

[S]tatistics about the US homeless population are staggering. More than a million people face homelessness each year in the United States, and these individuals often have multiple complex illnesses and comorbid mental health conditions. Orchestrating care for the homeless population poses significant challenges.

Little is known about the end-of-life (EOL) experiences of homeless persons. A major gap in knowledge exists regarding the symptoms experienced by homeless persons at or near the EOL—information that would help clinicians not only manage these symptoms but also assist homeless persons with advance care planning and decision-making around death and dying.

To characterize these symptoms, Tobey and colleagues[1] surveyed homeless persons at a medical respite program who were approaching the EOL. The demographic data derived from this study speak to the distinct palliative care needs of the homeless. Sociodemographic data from this study, showing that 60% had substance use disorders and 85% abused alcohol, will greatly affect the provision of care for this population. All homeless patients interviewed reported experiencing pain, and psychosocial needs were equally significant. Nearly all (95%) of the sample had experienced the death of a loved one, 25% worried daily about their own mortality, and 75% worried that no one would even know that they had died.

Viewpoint

The palliative care needs of various subgroups of people with serious illnesses are well documented in the literature, providing data about the unique physical and psychosocial needs of patients across many diagnoses and clinical settings.[2,3,4] The study by Tobey and colleagues adds to the body of literature by describing the distinct needs of the homeless population. The findings of this study provide insight for clinicians and for health policy administrators to attempt to meet the challenging needs of the homeless.

The study’s design was commendable. Direct interviews with homeless persons helped to understand their unique needs during their last months of life. The use of a medical respite center serving the homeless provided an ideal environment for the study.

Although the study sample size was small, the findings are rich in meaning and have implications far beyond the medical respite unit where the study was conducted. These findings will also apply to the many diverse settings where homeless persons seek care: public hospitals, emergency departments or urgent care centers, Veterans Affairs hospitals, and other settings.[5,6] Continued research and clinical advances in the care of the homeless are obligations of palliative care, a field committed to comfort and respect for all patients.

Complete Article HERE!

I’m glad my friend was able to make his own end-of-life decision

Cave of Coffins at Beit Shearim National Park in Israel is believed to be the final resting place of Judah Ha-Nasi, a talmudic sage whose maid assisted him in dying.

[A] close friend passed away recently — no doubt among the first people to take advantage of California’s End of Life Option Act. Signed into law in 2015 and in effect as of June 9, 2016, the law gives terminally ill adults who have only six months to live the ability to request and obtain life-ending medication.

My friend had a virulent form of prostate cancer. He lived with it for a few years, but when the tumors began to invade almost every part of his body, he entered hospice and requested the drugs. He wasn’t sure he would take them, but when the pain kept getting worse and it became obvious that the end was near, he made his decision. He died peacefully with his family at his side.

Along with California, only Oregon, Washington, Vermont, Montana, Colorado and Washington, D.C., support medical aid in dying. Now, with the recent tide of conservatism, opponents of medical aid in dying are moving quickly to attack the option.

The law was challenged in Riverside in August, but a judge denied the request for an injunction filed by a group of anti-choice physicians. The Montana House of Representatives was considering a bill that would have allowed the state to execute doctors for prescribing end-of-life medication. The bill was narrowly defeated on March 1. The nominee to the Supreme Court, Judge Neil Gorsuch, wrote a book on how to defeat death-with-dignity bills, suggesting the option violates the Constitution.

I have always been a strong advocate of death with dignity. I first became involved in this issue several years ago, when my mother found out she had ALS, a devastating neurological disease. She was 77, a refugee from Hitler’s Germany, and knew what was in store. She asked me to help her.

I spoke to her doctor, who said he might be able to “put her under” if her distress became unbearable. We left it at that, until hospice became involved. When I told them about the agreement, they said they could not support it and would now monitor the amount of morphine in the house.

At a loss, I did research and found an organization called Compassion & Choices. They came to visit my mother and me, and told us what she could legally do to take control of her death in New York. She would have to acquire the appropriate life-ending medication, and take it while she was still functional. Like most patients in her situation, she was relieved to know what she could do, but ended up dying on her own.

All religions take a stand on this issue. There is no question that Jewish law and tradition reject suicide, prohibit murder and accept pain and suffering as a part of life. The tradition is less clear when it comes to a person who is already dying of a terminal illness.

The Talmud tells the story of the death of a great sage, Rabbi Judah Ha-Nasi. The rabbi is suffering greatly but his students are praying with fervor in the courtyard to keep him alive. Out of compassion for his suffering, his maidservant drops a jar from the rooftop, stunning the students into silence, at which point the rabbi dies.

This story has been used to justify the removal of life support, validating the patient’s right to a death with dignity, without pain and suffering. Judaism also usually considers palliative care an appropriate measure if someone is suffering at the end of life. But most Jewish traditions end there.

If we allow caregivers to remove life support, and to provide palliative care, why can’t we give the terminally ill the tools for a peaceful death? The states that support the legislation have very strict safeguards in place, and patients must take the life-ending medications themselves, after they have been prescribed by a physician for that purpose.

My friend found great comfort knowing he had the life-ending medication, even if he wasn’t sure he would take it. He told me it freed him from anxiety, so he could spend his last days focusing on what meant most to him — being with his family and his friends.

Complete Article HERE!

How Death Makes Us Human — For Now

Thinking of death is inherent to being human. Technological advances, like so many human activities, reflect our desire to avoid it. But that may all be bound to change.

 
By Darío Sztajnszrajber

The human being’s link to death is intrinsic and existential. It is not an external notion one could discard or disregard and somehow remain human. Death, simply put, is a part of us.

As the German philosopher Martin Heidegger observed, our death is both imminent (we could die almost immediately) and conceived in our minds as too distant (we usually think we still have a long time left to live). French philosopher Jacques Derrida asked cheekily, “Is my death possible?” when dying precisely eliminates all possibilities. The curious thing is that while we know we are born to die, we spend our lives trying to transcend death. There is a basic awkwardness or nonsensical origin to all our actions: Whatever we do, we will still die, whence our flight toward daily routines in order to forget or seek relief. This ambiguity may explain a great part of human culture. Just as we want to negate death, we also seek to surpass ourselves.

The 20th-century Spanish writer Miguel de Unamumo postulated that human anxiety was a product of the tension between reason on the one hand, which understands that life is finite, and the desire that it continue forever. That desire has become the engine behind all the attempts to supercede our limits. Thus with every technological innovation, symbolic transformation, revolution in values or new narrative on the meaning of life, are we not aspiring, ultimately, to achieve immortality?

Graveyards do not so much recall our provenance as our destination

 
Now death, which pertains to others, is not the same as dying, which we cannot possibly experience. Cemeteries and their rituals are a means of linking ourselves to the deaths of others, the only possible death experience. In any case, a person supposes that he too will also be buried, honored and remembered — or forgotten. Graveyards do not so much recall our provenance as our destination, prompting the sensations of uncertainty, respect and concern among us all.

Cemetery in Buenos Aires

Cemeteries remain of their time of course. Technology makes it possible today to live on through images and sounds, and create a presence from the experience of absence. It would be interesting to analyze the impact of death’s omnipresence, and the evolution both of mourning and the mechanics of a memory that now is live before us, always within reach.

In reality, current trends like robotics or cloning will change the roots not just of our ties with the death of others, but our own dying. The day will eventually come when we have resolved death, which can only happen when we stop dying. That of course is also when we will stop being human. And so we shall mutate again …

Complete Article HERE!

When dying is a choice

By

[I]t was cold but the sun was shining when my father looked out the window and said he wanted to die.

He was lying in a hospital bed, tubes tying him to machines and drips. He was 65, wasn’t a smoker but, like a lot of firefighters, had inhaled things that embedded in his lungs, slowly strangling them. His skin was ashen, his eyes wet and hauntingly sad.

When he said he wanted to die, my immediate reaction was to reassure him, to hold his hand, to tell him that my mother, my brother, my sister, and I didn’t want him to go, that we loved him too much to let him go, that he couldn’t go just yet.

That was 29 years ago, and it took me many years to realize that my reaction to my father’s plaintive, death-bed declaration was selfish, that it was rooted in what I thought was best, what I wanted, not what he thought was best, not what he wanted.

My father lingered for several weeks after he told me he wanted to die, suffering greatly. I have no idea if he would have opted to end his life earlier, to end his suffering earlier, but I wish he had the option.

It would be helpful to know whether a majority of Massachusetts legislators think others should have that option, too, but for the last eight years they have punted on the Death with Dignity Act, bottling it up in committee so that it dies without the dignity of a full and fulsome hearing.

Five years ago, a referendum that would make it legal for physicians to prescribe medications that terminally ill people could use to end their lives was narrowly defeated. But, like all social change, like all civil rights, the right to die with dignity is moving forward, inexorably.

Last month, the Massachusetts Medical Society commissioned a survey of its members’ attitudes toward what they called “medical aid in dying.” For a group that has historically opposed what some call physician-assisted suicide, the mere act of seeking its members’ opinions acknowledges the shift, much of it generational, in thinking.

In October, Dr. Roger Kligler, a retired Falmouth physician with prostate cancer, filed a lawsuit asserting he has a right to obtain a lethal dose of medication from a doctor willing to prescribe it if he becomes terminally ill and chooses to avoid more suffering.

Dr. Kligler rightly believes he’ll get a quicker answer from a court than the Great and General Court. As it has with other highly contentious matters, including same-sex marriage and the legalization of marijuana, the Legislature has been more than happy to let the courts or the public do the heavy lifting.

But even if a court agrees with Dr. Kligler’s argument, the decision could be narrowly tailored to only his case. And as the messy rollout of marijuana legalization has shown, legislating complex matters by referendum often leads to convoluted results.

The Legislature needs to take on Death with Dignity, in all its complexity.

Nine years ago, State Representative Lou Kafka sat down with one of his constituents, a guy from Stoughton named Al Lipkind, who was dying of stomach cancer. Lipkind asked Kafka to file a bill that would make it legal for doctors to write prescriptions for terminally ill people who wanted to avoid needless suffering. Kafka refiles the bill every session. The initial dozen co-sponsors have grown to 40.

“Al was able to make me see it through his eyes,” Kafka told me. “Unless and until it becomes personalized, it’s an issue you don’t necessarily think about.”

Not long after Al Lipkind died in 2009, Kafka watched helplessly as the same disease that slowly and torturously killed my dad did the same to his father.

“I watched him gasp for breath,” Kafka said.

Like me, Lou Kafka doesn’t know if his father would have chosen to end his life before enduring months of agony. Like me, he wishes his dad had the option.

Complete Article HERE!

A life lesson in the death of a much-loved cat

By Tim Dick

[O]ur household had a late and unwelcome entry in the death toll of 2016. It came with Rocko, who scraped in with a departure on Friday. Granted, the death of a cat is of less moment to most than that of George Michael, and he was a celebrity only to those who knew him, but our wee furry guy managed to give us life lessons without the irritation of a life coach, and company without human complications.

His first life lesson to me was early rising. His day, and therefore mine, began with regularity at 5.30am with a gentle whisker brushed across my face, then the nudge of a cold nose if that didn’t work, then a bite to the nose if all else but mild violence failed to rouse the deliverer of his morning meal.

 


 

Once the irritation has passed that the cat alarm once again chose my side of the bed, and never the other, I was up, fed, and at work before most others, getting my stuff done, and setting up an early exit at the other end of the day. Rocko was a productivity booster devoid of mumbo-jumbo: get up early, do your work, go home.

His second lesson was to demonstrate the benefits of adequate insurance, by having no insurance. Pet insurance might sound faintly ridiculous, but having spent thousands on vet bills in the last two years, and unless you’re able to save for unknown future medical catastrophes, it’s a no-brainer. We’re now breaking even on the insured dog, but were too slow for the cat. It’s compulsory for any future pet.

Rocko the cat

His third lesson was the decision in which he took no part, but which was the right thing to do, and which is the law makes impossible for people: euthanasia.

Nearing Christmas, he became bloated, carrying lymphoma in his gut, heart disease, and a tumour on his liver. We decided to put him down, but delayed it a week or so. He didn’t make it that far, forcing the decision to euthanase after he’d collapsed at home.

I knew something bad was up when, for the first time, he didn’t shred my arms while being shoved in the cat carrier.

As he lay dying on the vet table, our sadness came tinged with relief that the law is gentle enough to allow vets to put down pets when their time has come. His suffering was exceptionally short, his end far more peaceful than we force some people to endure.

After the narrowest of defeats for a euthanasia bill in South Australia in November, the next test of whether politicians will allow people the same mercy as we afford our pets comes in Victoria later this year. The Andrews government said in December it would bring legislation to allow some dying adults to die sooner than they otherwise would.

The right will be restricted to those who have the capacity to make decisions, who are at the end of their lives because of a terminal illness. Two doctors will likely have to approve the prescription of a euthanasia drug, and patients unable to take the tablet themselves could be helped by a doctor.

It strikes the right balance between the right of the dying to avoid unnecessary pain, and protecting others from an unnecessarily hasty death. It merely adds another option for those at the end of their lives, rather than being pumped with morphine to dull the pain of a disease taking its course.

It would end that fake distinction between the legal form of hastening death known as passive euthanasia (like doctors turning off a life-support machine), and the form of hastening death known as active euthanasia (a doctor-provided pill or injection that causes death) which remains illegal across Australia even with the ardent wishes of the patient.

It’s now two days after we put Rocko down, and I am using the home computer without feline keyboard interference for the first time in years. On the screen, which I can see without having to peer around a cat head, is an e-book called Damage Done, a collection of personal essays compiled by Andrew Denton’s advocacy group, Go Gently Australia.

A short way in is an extraordinary death notice, published in The Age last year, which captures the need and urgency for voluntary euthanasia far better than I can. It speaks for itself: “Andrew Ross Carswell, a skilled musician, at times tedious intellectual, much loved friend of many, valued family member, and adored husband to Carolyne, died an unnecessarily protracted, distressing death on Sunday 13 March as a result of the continuing absence of legislation that could have otherwise allowed a man of his integrity experiencing the final stages of liver cancer peaceful, timely access to euthanasia. May he finally be able to enjoy the long sleep he had been anticipating and may the anti-euthanasia lobby collectively experience the tediously prolonged, objectionable demise they are so determined to impose on everyone else.”

Complete Article HERE!

Americans want assisted suicide

Rev. Nancy Butler

On Wednesday the Rev. Nancy Butler of Riverside Family Church in Hartford died voluntarily. For two years she had been suffering the debilitating effects of ALS even as she continued to pastor the evangelical church she established in 2008 as “theologically open minded, diverse, empowering women and affirming of LGBT people.”

The letter she wrote to her flock last week begins:

I have decided to go off my feeding tube and vent this week and . . . how should I put it . . . die. I knew my suffering would reach this tipping point and caring for me would become impossibly demanding. What I didn’t know was whether or not God would want me to suck it up for some unseen purpose or end my life this way.

I am a little surprised God is confirming this decision. Nice to know He isn’t a sadist. He is oh so tender right now. He tells me my work is done and it’s the right time to come home.

Having a feeding tube removed does not legally count as assisted suicide, but we shouldn’t be fooled by the passive voice. Someone took the tube out, very likely a medical professional. Nancy Butler died of her own will, with assistance.

So did my mother Bernice, who consulted with her internist before deciding to stop eating and drinking six years ago. She was facing a painful death from peritoneal cancer and chose instead to end her life voluntarily. That was not, technically, assisted suicide either.

Assisted suicide is defined as “knowingly and intentionally providing a person with the knowledge or means or both required to commit suicide, including counseling about lethal doses of drugs, prescribing such lethal doses or supplying the drugs.”

Most Americans have no problem with that, so long as the person is facing a painful terminal disease. Indeed, according to a new study from LifeWay Research, fully two-thirds of them find it morally acceptable.

To be sure, a moral distinction can be drawn between providing a person with a lethal drug and withholding or withdrawing treatment or sustenance. But it’s a distinction without a difference, as far as most are concerned.

The moral issue, it seems, is not how death comes about but whether the terminally ill get to choose. The answer, increasingly, is yes. That goes for 70 percent of American Catholics, whose church has worked hard and with some success to prevent state approval of assisted suicide laws.

“The concept of physician-assisted suicide is a major affront to the teachings of the church,” Michael C. Culhane, executive director of the Connecticut Catholic conference, said last year.

But as a matter of public policy, the argument ought to be prudential. Will terminally ill persons be hustled into the next world without their really wanting to be?

The best empirical evidence we have in the U.S. comes from Oregon, where assisted suicide became legal in 1998. Since then, the annual number of legally sanctioned suicides has risen from 16 to 132, with a doubling since 2010.

That’s under four percent of Oregonians who died last year. Of them, 77 percent were dying of malignant cancers and 9 percent had ALS — as has been the case throughout the history of assisted suicide in the state.

I know that my mother chose what she wanted, and I’m confident that Nancy Butler did too. I’m with most other Americans in not wanting to stand in the way of those terminally ill persons who choose to do the same by way of lethal prescription. I cannot speak for God.

Complete Article HERE!