Category: Death Education

Posted on

The Death-positive Movement & The Order of the Good Death

by Carl Gregg

As of last week, more than 150,000 people have died from the coronavirus in the U.S. alone. And we should be honest that that number is likely an undercount due to inconsistencies in how various localities attribute COVID-19 as a cause of death (The New York Times). Worldwide, more than 600,000 people have died of Coronavirus (NPR). The death toll will continue mounting in coming months. So in such a time as this, taking a step back to reflect on our own mortality seems in order.

Now, I will readily confess that confronting the subject of death can feel like a lot to take on: it can be a heavy, freighted topic, but it is also incredibly important. As the saying goes, “None of us are getting out of this alive!” One option, of course, is denial: trying to avoid the topic of death as much as possible until our time inevitably comes. But I invite you to consider that there is a better way. Keeping our mortality in mind and cultivating practices supportive of dying well (to the extent that is within our control) can be a key part—and sometimes a deeply moving, meaningful, and beautiful part—of living well.

Along these lines, reminders of mortality can be a central practice in the Buddhist tradition. Indeed, some Buddhist traditions specifically include “four reminders” which are sometimes linked to the origin story of the Buddha. After all, the rich and privileged Prince Siddhartha was launched onto the spiritual quest that would lead him to become the Buddha precisely when he wandered outside the protected gates of his palace and encountered three visceral, existential reminders about impermanence and change. He encountered, in turn:

  1. Old age (a person whose body had grown frail)
  2. Sickness (a person whose body had become ill), and
  3. Death (a body that had died)

In each of these cases, the young Siddhartha Gautama—the future Buddha—realized, “I am not exempt”: I too will grow older, get sick, and someday die.

My intent is not to be unduly morbid. Instead, it is to realize that reminders of our mortality—that none of us are promised even the next moment—can wake us up into more fully and freely experiencing life. We’re not going to be around forever, so stop sweating the small stuff; let that [BLEEP] go. We’re not promised even tomorrow, so let’s make the most of this time that we do have here and now. Can you feel that aliveness, that edge that remembering our mortality can bring?

The fourth reminder is that contemplative practices offer us a path of liberation—not an escape from those first three reminders (old age, sickness, and death), but a way of transforming our relationship to unsatisfactoriness. As the saying goes, “We can’t stop the waves of change from coming, but we can learn to surf.”

If you will indulge me in a related tangent, part of what comes to mind when I think about death is sex. Not in a weird way, but in a free association to another of those other big, freighted parts of the human condition. And it regularly makes me proud to be part of the Unitarian Universalist movement that is more than five decades into a commitment to comprehensive, lifespan sexuality education. Our Whole Lives (affectionally abbreviated as OWL) was launched fifty years ago in 1970. (This program was originally called AYS, About Your Sexuality.) For more than five decades Unitarian Universalism has been at the forefront of the sex-positive movement: affirming a wide range of sexuality as natural and healthy and emphasizing safer sex practices, consent, body-positivity, and reproductive justice.

I bring up that longterm commitment to the sex-positive movement because we quite progressive UUs have some work to do to be equally as committed to the death-positive movement. Death-positive, you might be asking yourself, “What is that?” For the uninitiated, allow me to introduce you to Caitlin Doughty, my favorite death-positive advocate. Doughty describes herself as a “mortician, activist, and funeral industry rabble-rouser.” I highly recommend all three of her books:

  • her memoir Smoke Gets in Your Eyes: And Other Lessons from the Crematory
  • her travelogue From Here to Eternity: Traveling the World to Find the Good Death
  • her most recent book Will My Cat Eat My Eyeballs? Big Questions from Tiny Mortals about Death.

All her writing is equal parts hilarious and profound. Some of you may recall that four years ago, I wrote a blog post on mortality inspired by Doughty’s memoir, as well as by the physician Atul Gwande’s book Being Mortal. I highly recommend that book as well, if you or someone you love is wrestling with end-of-life medical decisions.

For now, I would like to share with you the eight central values of the Death Positive Movement as articulated by a group Doughty helped found, called The Order of the Good Death:

  1. Hiding death and dying behind closed doors does more harm than good to our society.
  2. The culture of silence around death should be broken through discussion, gatherings, art, innovation, and scholarship.
  3. Talking about and engaging with my inevitable death is not morbid, but displays a natural curiosity about the human condition.
  4. The dead body is not dangerous, and everyone should be empowered (should they wish to be) to be involved in care for their own dead.
  5. The laws that govern death, dying and end-of-life care should ensure that a person’s wishes are honored, regardless of sexual, gender, racial or religious identity. [More information available at “Death with Dignity“]
  6. My death should be handled in a way that does not do great harm to the environment. [More information available at “Green Burial“]
  7. My family and friends should know my end-of-life wishes, and I should have the necessary paperwork to back-up those wishes. [More information available at “Conversation Project” and “Five Wishes”]
  8. My open, honest advocacy around death can make a difference, and can change culture.

And our culture is changing even if we still have a long way to go. One of the most pervasive death positive shifts is the Hospice Movement (which started in the 1960s and entered the U.S. in the mid-1970s). Hospice has initiated a much-needed sea change in according death greater dignity.

Relatedly, many of you may be familiar with doulas in the context of accompanying, guiding, and empowering people giving birth. There are also a growing number of people being trained as death doulas to accompany, guide, and empower people at the end of life.

And some of you may have also heard of or even participated in the Death Cafe movement, which was founded in 2004 as a way to connect people who want to talk about death in an open, honest way. As one of their promotional slogans says, Death Cafes, “never involve agendas, advertising or set conclusions. Interesting conversations are guaranteed!”

If you google “Death Cafe” (or visit deathcafe.com) and your zip code into the “Find a Death Cafe” link, you’ll find that the closest Death Cafes. You may even find one has moved to Zoom during the pandemic, and is open to all.

Here one description:

Death Cafes are an opportunity to demystify the death experience. We offer an open, safe environment for discussing thoughts and feelings about all manner of death and dying.

At a Death Cafe people drink tea, eat cake and discuss death. [“Life’s short, eat dessert first,” right?!] Our aim is to increase awareness of death to help people make the most of their (finite) lives…. Please note: Death Cafes are not meant to act as support groups or grief counseling.

If this post leaves you a little “death curious,” perhaps joining an upcoming Death Cafe might be right for you.

Overall, the hope is that being more open, honest, and transparent about our inevitable death can empower us to make the most of the life that we have. One ancient Buddhist inquiry practice puts it this way: “Since death alone is certain, and the time of death uncertain, what should I do?” 

As we sit with that question, allowing it to sink in, I want to conclude with a story. A few years ago my colleague the Rev. Georgette Wonders preached a sermon on the subject of death and mortality to Bradford UU Community Church in Kenosha, Wisconsin, the congregation she served as minister. That sermon was titled “Facing Death: The UU Book of the Dead.” She preached it on Sunday, August 6, 2014 with no knowledge at the time that she would be killed two days later in a car accident.

I invite you to reflect on the final section of Rev. Wonders’ sermon on “Facing Death: The UU Book of the Dead.” She is speaking to us from beyond the grave: both her words and the example of how she lived her life are part of the legacy that she had left behind as a gift for those of us still living. As you listen, notice if any words or phrases particularly resonate with you in this season of your life. Whether we are saying goodbye to a loved one—or whether we are the one being said goodbye to—the way we prepare is to:

  • Live each day as if it were the only day.… Every time you part, from this day forward, tell them you love them, even if you are in and out all day long.

  • Appreciate the little things—the common, everyday things—because they will become almost unbearably precious when death comes knocking at the door.

  • Overcome your resentments and learn not to accumulate them.

  • Be useful and light upon the earth.

  • Live a grateful life.

Posted on

The virus is robbing many people of a ‘good’ death.

How do we change that?

COVID-19 has taken away our ability as a society to avoid the topic of death. But we’ve needed to improve our ‘death literacy’ since well before the pandemic hit.

By

For years, we kept death at arms length. We awkwardly avoided it, looked the other way, and hid it behind layers of euphemism.

But since January, death has been inching closer, a drum beat in the back of our minds getting louder as COVID-19 spread around the world. Body counts became the focus of every news update. Field hospitals in Central Park. Mass graves in Italy. A gnawing sense that within weeks, this could happen here.

In the United States, deaths started losing their meaning. The numbers quickly dwarfed 9/11, then Vietnam, then every war combined since Korea. While 189 Australians have died, and the numbers keep rising through Melbourne’s awful outbreak, there’s still a sense of distance. People die from COVID-19 in hospitals, and nursing homes, far away places we can easily ignore.

But with COVID-19, the issue isn’t who dies, or where they die, it’s often how they die. And that is something we, as a death-averse culture, might not be ready for.

A death with dignity

For a culture where talk of dying is so taboo, so many of us want the same thing — a death with dignity.

A good death, says University of Wollongong Associate Professor of General Practice Joel Rhee, can be hard to achieve. But what is key is having a sense of control.

“It’s a death where you’re in an environment where you’re surrounded by people you love. You’ve got some dignity about how you’re going through the last few months,” says Rhee.

“It’s when your concerns, fears, psychological and spiritual needs are taken care of.”

COVID-19 takes away all that. The virus robs people, no matter their age, of any sense of control over their final days.

People die slowly and painfully, choking to death in near silence. They die alone, isolated from friends and loved ones, with exhausted health workers draped in PPE. And when they go, the atomising force of the virus disrupts the post-death rituals that give loved ones the closure they need.

Funerals are restricted to just a handful of people. The whole process of collective bereavement, gathering under one roof to hug and cry, is suddenly too risky. When residents died at St Basil’s in Melbourne, their families couldn’t even enter the facility to collect their belongings.

It’s that loss of dignity and control, that isolation from loved ones, that make the cynical calls to let the virus rip seem all the more callous. Deaths from COVID-19 aren’t just numbers on a spreadsheet. They’re real people, with families who are robbed of the chance to do right by them.

Jennifer Philip, chair of palliative medicine at the University of Melbourne, says the pandemic has made the job of supporting people in their final days so much more challenging.

“A big part of what we do in palliative care is communication and supporting families. But that’s all done remotely, behind layers of PPE,” Philip says.

“When you’re doing telehealth, many of the usual gestures we use are not visible. And there’s a lot of work with connectivity — using iPads and technology that older people may not be comfortable with.”

We need to talk about dying

But even before the pandemic hit, what stops people getting a good death, according to Philip, is our inability to talk about it, often till it’s too late.

“We don’t talk about it in a meaningful way, or grown up way. Certainly not in a nuanced way,” she says.

That’s something Jessie Williams wants to change. She’s CEO of the Groundswell Project, a not-for-profit that is trying to change the way Australians talk about death.

Once upon a time, Williams says, death was sudden and it was everywhere. But as we got wealthier, as medical science advanced, we were better able to draw out our final years, and push it away.

“We don’t see death, we don’t touch it and we don’t smell it,” Williams says.

Williams, who works with businesses, and runs public campaigns, to promote what she terms “death literacy”, says she’s felt a bit of a change during the pandemic.

“We’ve been overwhelmed — we’ve seen more engagement from new people coming on board.

“We’ve had more people coming forward for end of life planning workshops, more people are reaching out to access materials.”

In his work as a general practitioner, Rhee says he’s had more patients wanting to talk about death. They’ve seen the numbers, and the pictures. They don’t want to go like that.

“They see people passing away, and they think about it a bit more,” he says.

The pandemic has upended our lives so much in under a year that it’s hard to tell what will stay entrenched. Even habits like social distancing and hand hygiene, so much a part of our conversations in March, seem to have fallen by the wayside a little.

But perhaps this period, where death is everywhere, could start to subtly rewire how we view the end.

When we understand pain

Sometime around the 4th or 5th Century BCE, in what is now Nepal, there lived a prince. Raised amid total luxury, the prince’s parents did everything to shield him from nasty, brutish and short life outside the palace grounds.

If you can believe it, the prince didn’t leave the palace till he turned 29. The first thing he saw when he’d snuck out was a man whose body was crippled by ageing. He’d never seen old age. Next was a sick man. He’d never seen disease. The prince then came across a funeral procession. He’d never seen death either. The last thing the prince saw was an ascetic — a man who’d given up life. The prince returned troubled by what he saw. The next day, the man who would become the Buddha gave up everything. Jarred by suffering and death, he chose to live the life of an ascetic.

One moral of the Buddha’s story is that the experience of death, of realising the depths of human suffering and the limits of our own mortality, can change us. Like the Buddha, many in the affluent West grow up insulated from death. And while grappling with our own mortality doesn’t necessarily produce such a radical transformation, it at the very least produces conversations and feelings we might not otherwise have.

Philip says when people start talking about death, it can be a moving, humbling and relieving experience. Often, the conversations they have aren’t laced with morbidity. Instead, they’re often far more mundane. People talk about what they value, and, at a time when they’re at their most mature, decide what matters to them.

Perhaps this is the way into talking about death. Because so much of our discomfort around dying is part of a larger, more innate human difficulty with talking about things that are inconvenient. We like to sweep uncomfortable conversations under the rug and forget about them.

The sooner those conversations about who or what matters to us happen, the better. As Philip says:

“You have to tell people you love them, or you forgive them, or you thank them. If those things are unsaid that’s a great tragedy for those left behind.”

Complete Article ↪HERE↩!

Posted on

Cancer, Religion and a ‘Good’ Death

It is hard to know how much my patient, caught in an eternal childhood, understood about his cancer.

By A. Sekeres, M.D.

When I first met my patient, three years ago, he was about my age chronologically, but caught in an eternal childhood intellectually.

It may have been something he was born with, or an injury at birth that deprived his brain of oxygen for too long — I could never find out. But the man staring at me from the hospital bed would have been an apt playmate for my young son back home.

“How are you doing today, sir?” he asked as soon as I walked into his room. He was in his hospital gown, had thick glasses, and wore a necklace with a silver pendant around his neck. So polite. His mother, who sat by his bedside in a chair and had cared for him for almost half a century, had raised him alone, and raised him right.

We had just confirmed he had cancer and needed to start treatment urgently. I tried to assess what he understood about his diagnosis.

“Do you know why you’re here?” I asked him.

He smiled broadly, looking around the room. “Because I’m sick,” he answered. Of course. People go to hospitals when they’re ill.

I smiled back at him. “That’s absolutely right. Do you have any idea what sickness you have?”

Uncertainty descended over his face and he glanced quickly over to his mother.

“We were told he has leukemia,” she said. She held a pen that was poised over a lined notebook on which she had already written the word leukemia at the top of the page; I would see that notebook fill with questions and answers over the subsequent times they would visit the clinic. “What exactly is that?” she asked.

I described how leukemia arose and commandeered the factory of the bone marrow that makes the blood’s components for its own sinister purposes, devastating the blood counts, and how we would try to rein it in with chemotherapy.

“The chemotherapy kills the bad cells, but also unfortunately the good cells in the bone marrow, too, so we’ll need to support you through the treatment with red blood cell and platelet transfusions,” I told them both. I wasn’t sure how much of our conversation my patient grasped, but he recognized that his mother and I were having a serious conversation about his health and stayed respectfully quiet, even when I asked him if he had questions.

His mother shook her head. “That won’t work. We’re Jehovah’s Witnesses and can’t accept blood.”

As I’ve written about previously, members of this religious group believe it is wrong to receive the blood of another human being, and that doing so violates God’s law, even if it is potentially lifesaving. We compromised on a lower-dose treatment that was less likely to necessitate supportive transfusions, but also less likely than standard chemotherapy to be effective.

“Is that OK with you?” my patient’s mother asked him. I liked how she included him in the decision-making, regardless of what he could comprehend.

“Sounds good to me!” He gave us both a wide smile.

We started the weeklong lower-dose treatment. And as luck would have it, or science, or perhaps it was divine intervention, the therapy worked, his blood counts normalized, and the leukemia evaporated.

I saw him monthly in my outpatient clinic as we continued his therapy, one week out of every month. He delighted in recounting a bus trip he took with his church, or his latest art trouvé from a flea market — necklaces with glass or metal pendants; copper bracelets; the occasional bolo tie.

“I bought three of these for five dollars,” my patient confided to me, proud of the shrewdness of his wheeling and dealing.

And each time I walked into the exam room to see him, he started our conversation by politely asking, “How’s your family doing? They doing OK?”

Over two years passed before the leukemia returned. We tried the only other therapy that might work without leveling his blood counts, this one targeting a genetic abnormality in his leukemia cells. But the leukemia raged back, shrugging off the fancy new drug as his platelets, which we couldn’t replace, continued to drop precipitously:

Half normal.

One-quarter normal.

One-10th normal.

One-20th normal.

He was going to die. I met with my patient and his mother and, to prepare, asked them about what kind of aggressive measures they might want at the end of life. With the backdrop of Covid-19 forcing us all to wear masks, it was hard to interpret their reactions to my questions. It also added to our general sense of helplessness to stop a merciless disease.

Would he want to be placed on a breathing machine?

“What do you think?” his mother asked him. He looked hesitantly at me and at her.

“That would be OK,” he answered.

What about chest compressions for a cardiac arrest?

Again his mother deferred to him. He shrugged his shoulders, unsure.

I turned to my patient’s mother, trying to engage her to help with these decisions. “I worry that he may not realize what stage the cancer has reached, and want to avoid his being treated aggressively as he gets sicker,” I began. “Maybe we could even keep him out of the hospital entirely and allow him to stay home, when there’s little chance …” My voice trailed off.

Her eyes above her mask locked with mine and turned serious. “We’re aware. But we’re not going to deprive him of hope at the end …” This time her voice trailed off, and she swallowed hard.

I nodded and turned back to my patient. “How do you think things are going with your leukemia?”

His mask crinkled as he smiled underneath it. “I think they’re going good!”

A few days later, my patient developed a headache, along with nausea and dizziness. His mother called 911 and he was rushed to the hospital, where he was found to have an intracranial hemorrhage, a result of the low platelets. He slipped into a coma and was placed on a ventilator, and died soon afterward, alone because of the limitations on visitors to the hospital during the pandemic.

At the end, he didn’t suffer much. And as a parent, I can’t say for certain that I would have the strength to care for a dying child at home.

Complete Article ↪HERE↩!

Posted on

A will doesn’t cover all your bases when it comes to end-of-life decisions.

Here’s what else you need

By Sarah O’Brien

  • A will is just one of several legal documents that help your loved ones know your end-of-life wishes.
  • If a person passes away without a will, a court may decide who gets their assets and who would care for any surviving children.
  • However, some assets pass outside of the will, including retirement accounts and life insurance.

As the coronavirus continues sweeping through U.S. communities and the death toll keeps rising, you might be considering your own mortality.

Regardless of the pandemic, experts say it’s important to plan for when you’re not here — that is, give thought to what would happen to your bank accounts, your home and your belongings, as well as, perhaps, your dependents.

That planning should start with a will. And apparently people know they need to take action, based on Google trends showing a jump in searches for information about creating one. 

“In every jurisdiction, if there isn’t a valid will, assets will pass on to your heirs by law, who may or may not be who you would have provided for in a will,” said Samantha Weyrauch Davis, an estate planning attorney and director with the law firm Hall Estill in Tulsa, Oklahoma. “It also lets you name a guardian for children.”

If you pass away with no will — called dying intestate — a state court decides who gets your assets and, if you have children, who will care for them.

This means that if you have an unmarried partner or a favorite charity but no will, your assets may not end up with them. Typically, the courts will pass on assets to your closest blood relatives, even if that wouldn’t have been your first choice.

However, a will is just one piece of an “estate plan.” An estate just refers to what you own — your financial accounts, possessions and any real estate. Putting a plan in place for those assets helps ensure that upon your death, your wishes are carried out and that family squabbles don’t evolve into destroyed relationships.

In other words, it’s partly about making things easier for your loved ones during an already-difficult time.

Here’s what else you should consider if you want to prepare.

What a will can and can’t do

A will is a document that lets you relay who gets what when you pass away. You can get as specific as you want (you leave a certain family heirloom to a particular person) or keep it more general (you want your surviving spouse to get everything).

However, there are some assets that pass outside of the will, including retirement accounts such as 401(k) plans and individual retirement accounts, as well as life insurance policies.

This means the person named as a beneficiary on those accounts will generally receive the money no matter what your will says. (Be aware that 401[k] plans require your current spouse to be the beneficiary unless they legally agree otherwise).

Those [online] forms or software may not be compliant with your local law, so look at the fine print.

Samantha Weyrauch Davis
Director with Hall Estill

Regular bank accounts, too, can have beneficiaries listed on a payable-on-death form, also known as a POD, which your bank can supply.

If no beneficiary is listed on those non-will items or the beneficiary has already passed away, the assets automatically go into probate. That’s the process by which all of your debt is paid off and then the remaining assets are distributed to heirs. The process can last several months to a year or more, depending on state laws and what’s involved in handling your estate.

If you own a home, be sure to find out how it should be titled to ensure it ends up with the person (or people) you want it to, because the laws can vary from state to state. Moreover, there can be other considerations when it comes to how a house is titled, including protection from potential creditors or for tax reasons later when the home is sold.

Another big decision

As part of the will-making process, you’ll need to pick an executor of your will (sometimes called a personal representative).

This can be a big job, experts say. Things such as liquidating accounts, ensuring your assets go to the proper beneficiaries, paying any debts not discharged (i.e., taxes owed to the IRS), and even selling your home could be among the duties undertaken by the executor.

In other words, just because you’ve known your best friend since elementary school doesn’t mean handling the challenge of being an executor is up their alley.

Where to get a will

To prepare a will, you can turn to an estate planning attorney in your local area — to ensure familiarity with state laws — or use an online option. However, be aware that not all of the web-based alternatives will necessarily reflect the specifics of your state’s law.

“There’s risk in doing it that way,” Davis said. “Those forms or software may not be compliant with your local law, so look at the fine print.”

If an online option ends up being appropriate for your situation, you may be able to find a form to download for free. Software will-making options can run about $60 or more, depending on what else is included. To set up an estate plan with an attorney could run several hundred dollars to more than $1,000, depending on the complexity of your situation.

Also, you’ll need to have a witness and/or notary sign it and make the document official, depending on the state where you live. The American College of Trust and Estate Counsel’s website offers a guide to laws and accommodations in every state if in-person meetings are not permitted due to the pandemic.

Other documents

Typically, estate planning also includes preparing a few other legal documents. This includes an advance health-care directive, also known as a living will.

This document outlines your wishes if you become incapacitated due to illness or injury.

Say you are on life support. Instead of a loved one making the agonizing decision whether to end all life-saving measures, your wishes would be specified in a legal record.

It’s also worth assigning powers of attorney. If you become incapacitated, the people to whom you grant powers of attorney will handle your medical and financial affairs if you cannot.

Often, the person who is given this responsibility when it comes to your health care is different from whom you would name to handle your financial affairs.

As with choosing an executor, make sure whoever you hand the financial reins to is trustworthy and smart.

“I tell my clients it’s really important to carefully consider the individuals you name,” Davis said. “You want to make sure they have the ability, skill set, time and desire to make such decisions and do these sorts of things.”

Make a list of critical documents

While it can be hard to imagine your own death, picture your family having to search through drawers for your original will, documents regarding your bank accounts and other assets, and maybe even your Social Security number.

The best way to avoid forcing them to deal with that task on top of mourning is to leave an organized list of information that the will’s executor will need to settle your estate, experts say. Be sure this includes passwords so your online accounts can be accessed.

Consider a trust

If you want your kids to receive money but don’t want to give a young adult — or one prone to poor money management — unfettered access to a sudden windfall, you can consider creating a trust to be the beneficiary of a particular asset.

A trust holds assets on behalf of your beneficiary or beneficiaries, and is a legal entity dictated by the documents creating it. If you go that route, the assets go into the trust instead of directly to your heirs. They can only receive money according to how (or when) you’ve stipulated in the trust documents.

The average cost to set up a trust using an attorney ranges from $1,000 to $1,500 for an individual and $1,200 to $1,500 for a couple, according to LegalZoom.com. Doing it yourself with online software could run several hundreds of dollars or more.

Complete Article ↪HERE↩!

Posted on

End-of-life planning during the coronavirus pandemic, in 8 steps

How to make crucial financial and health care decisions for you and your loved ones.

By Ann Neumann

Surely you’ve heard it’s a good idea to have a will, just in case anything should happen. Yet we tend to put off completing the paperwork — the documents are confusing and it can be distressing to think about our own mortality. A 2017 study found that only about a third of Americans have completed the necessary end-of-life forms.

The Covid-19 pandemic now has many scrambling to figure out how to get wishes into writing. The coronavirus has reminded us that mortality is unpredictable and so it’s a good time to get our medical and financial matters in order.

The benefits to doing so are many: peace of mind knowing that you will get the medical treatment you want; that your possessions and assets, many or few, will be given to those you choose; that you are protecting your family and friends from having to guess what you would want; and preventing the squabbles that could erupt from family disagreements.

But how to complete the necessary paperwork while in social isolation? In some ways, self-isolation provides the perfect opportunity to get your documents together, but finalizing them can be difficult when a notary and witnesses can’t be in the same room with you.

Signing off, online

On March 20, Gov. Andrew Cuomo made New York one of the more than 20 US states to allow remote online notarization of documents — providing a solution to the challenge of self-isolation. It is a temporary law, and no one knows what it will mean once the pandemic has subsided. New York state also requires two witnesses (laws vary by state) to sign some of these documents, a problem that the temporary notarization law does not explicitly address.

Peter Strauss, a senior partner at Pierro, Connor & Strauss and a founding member of the National Academy of Elder Law Attorneys, has instituted a protocol that he and his firm believe will accommodate remote witnesses. Using a video chat program like Zoom, GoToMeeting, or FaceTime, witnesses show their ID and are recorded signing the document by the notary public. Still, Strauss recommends revisiting all documents once your state has safely reopened and completing them in person.

Fern Finkel, a Brooklyn elder care lawyer, said she was concerned that the online notarization process, depending on how the witnesses are involved, could leave documents open to contest. She, too, advised that any documents completed now with online notarization be revisited in the future.

But she and other experts said it is still very important to take steps now to account for medical and financial contingencies should you become ill. “The pandemic is a reason to act, not to delay necessary planning,” Strauss said.

As far as medical contingencies go, “it is really important for doctors to always be guided by the voice and values of the patient,” said Dr. VJ Periyakoil, associate professor of medicine at Stanford and director of the Stanford Palliative Care Education & Training Program. To preserve patients’ voices, Periyakoil and her team have worked with patients to create “The Letter Project,” free and simple forms that help patients communicate their wishes to their family and doctors.

The letters, which are not state-specific and come in eight languages, provide a structured way for each person to think through these important, timely, and emotionally charged issues. They can be printed, filled out, and attached to any state’s forms, also available online. “Our goal is to democratize health care,” Dr. Periyakoil told me, “If people have to choose between groceries or advance directives, groceries are always going to win.”

To get yourself and your loved ones (legally) prepared, here are eight important steps to take.

What you should be doing right now

1. Organize. “The first thing you have to do is understand what you have,” Finkel said. Pull out all your existing documents and organize them in one place. Do you have a health care proxy (designation of a person to make your medical decisions when you can’t), a HIPAA authorization (designation of a person to access your doctor and medical information), a living will (statement of what medical treatments you want in various situations), an intent to return home, a power of attorney, a trust, and/or a last will and testament (statement of how you would like your assets distributed)?

Collect these items in one place in your home — a desk drawer, say, or a file box. (If your documents are somewhere else in a safe deposit box, leave them there — just make sure your family members know where they are.)

Once you’ve done an audit of these documents, you can arrange an online consultation with a knowledgeable attorney to help guide you through what needs to be done. (Justia provides a list of elder law lawyers, for example, or ask your friends for a recommendation.)

To this file, add other essentials that your family members might need should you be incapacitated: checkbooks, insurance policies, safe deposit box keys, Social Security card, passport, birth certificate, and other identification, mortgage, deed or lease for your home, and vehicle titles.

2. Beneficiary designations. During this crisis (or at any time), it is advisable to designate beneficiaries on all of your accounts. Take a look at bank accounts, retirement accounts, and investment accounts to see if they have a beneficiary designation.

“People don’t understand that how accounts are titled is supreme to what’s in a will,” Finkel said. For instance, if your will divides your assets equally among your three children but your oldest daughter is the beneficiary on a bank account, she will receive the accounts’ balance upon your death.

Which means that much of your property designation can actually be done remotely by requesting the appropriate form from your bank or financial adviser and returning it by mail. “If these forms need to be notarized, you can do so remotely,” Finkel said.

3. Health care proxy. If you are in isolation with others you may be able to fill out a health care proxy. The document — which varies by state — often requires two witnesses, like your home health aide and your best friend (neither can be your assigned agent). The proxy allows you to appoint an agent who will make your medical decisions should you become incapacitated. You do not need a lawyer or a notary to complete this form. (AARP provides links to these forms for every state.)

4. HIPAA. Everyone should complete a HIPAA form. “If you can’t get two witnesses [for a health care proxy] because you’re self-isolated,” Finkel says, “you can still do a simple authorization [the HIPAA form] to let your close people be able to speak to doctors.”

At a time when visitors are not allowed in hospitals or nursing homes, the HIPAA — an acronym for the law that protects patient privacy, Health Insurance Portability and Accountability Act — will allow your designated loved ones to talk to your doctors about your status. Also, Finkel says, you can name as many designees as you want, just fill out the form with their names and contact information

Once you have completed a health care proxy and/or a HIPAA form, take a photo of them and share it with your designee. “I have HIPAA authorizations for my dad and my husband on my phone,” Finkel told me. They’re at her fingertips should she need them in an emergency. (You can access the HIPAA form here.)

5. Financial institution power of attorney. You can also complete a basic power of attorney form with your bank that designates a person to make financial transactions in those corresponding accounts. You can request the form and, if the institution allows, notarize it remotely. Some banks may have their own procedure, so check with them first.

“Do whatever you can right now to set up a designee for each of the banks you use,” Finkel recommended.

6. Direct deposit and direct pay. Now that you’re at home, it’s the perfect time to put all your bills and monthly payments online. Have your income deposited into one account and your regular bills auto paid from the same account. Heat, electric, gas, cell phone, cable, wireless, water — and your monthly rent or maintenance fee if possible.

“Get everything online, electronically paid, so that all of these things are seamless,” Finkel told me. Should you have to be hospitalized (hospital stays for severe cases of Covid-19 last an average of 10-13 days, with some lasting much longer), when you come home all of your services will be in place.

7. Passwords. While you’re setting up your bills for auto pay, organize all your online passwords. Once you’ve recorded the username and password for all of your utilities, do the same for your online accounts like email, social media, entertainment services, and other online platforms. Share this document with your most trusted person so that they’ll have it in your absence.

8. Have the conversation. This is also the time to talk to your loved ones about your health care and financial decisions. This difficult time might actually make the conversation easier for you and your family. “People around me are dying,” Finkel said. “We’re in a pandemic, and everyone is starting to see their own mortality. Let your loved ones know your wishes.” Tell the people you love where your documents are, and give your health care proxy, power of attorney, and HIPAA to your trusted agents named within them.

And there is one more important thing: “We can take this time to talk to our loved ones,” Periyakoil told me. “If there is one thing even more important than advanced directives, it’s really telling our friends and family how much we love them.”

Complete Article ↪HERE↩!

Posted on

What Happens As We Are Dying?

The First And Last Things To Go

Knowing what happens when we’re dying can tell us how to console colleagues and loved ones as they lose their battle with COVID-19.

By Bryan Robin

As our mother lay dying, my sister and I sat on either side of her, holding her hand and whispering words of comfort until the hospital machine showed a flat line. Having heard that physicians often witness positive reactions in patients when loved ones speak to them in their final moments, we intuitively thought that perhaps she could hear us. No one knows for sure what happens as we die, but recent information from neuroscientists shows that our intuitions could be right. Knowing what happens when we’re dying can tell us how to console colleagues and loved ones as they lose their battle with COVID-19.

The Last Thing To Go

In the last hours before an expected natural death, many people enter a period of unresponsiveness, during which they no longer respond to their external environment. Anecdotal reports from near-death experiences commonly include stories of the dying person hearing unusual noises or hearing themselves pronounced dead.

In a June 2020 groundbreaking study published in Scientific Reports, neuroscientists provided the first empirical evidence that some people can still hear while in an unresponsive state hours before dying. Using EEG indices, neuroscientists at the University of British Columbia measured the electrical activity in the brain from hospice patients at St. John’s Hospital when they were conscious and when they became unresponsive. A control group of young, healthy participants was also used. The researchers monitored brain responses to tones and found that the auditory systems of the dying patients responded similarly to the young, healthy control groups just hours from the end of life. They concluded that the dying brain responds to sound tones even during an unconscious state and that hearing is the last sense to go in the dying process.

The First Thing to Go

Many people who have had near-death experiences describe a sense of “awe” or “bliss” and a reluctance to come back into their bodies after being revived. I interviewed brain scientist Dr. Jill Bolte Taylor, who described having a strikingly similar awe experience during her stroke which she detailed in her book My Stroke Of Insight.

Jill Bolte Taylor: I was bouncing in and out of the consciousness of my right brain. The left brain had the hemorrhage, growing at an enormous rate over those four hours. By the time I got to the hospital, the hemorrhage was about the size of my fist in my left hemisphere. Over the course of the morning, I drifted into blissful euphoria, the consciousness of my right brain. And then I would come back online and attend to the details to get myself help. It was a movement in and out of being aware of external reality. I was completely conscious through the entire experience, but only at some point could I attend to detail in the external world, recognize that it existed, or even care.

Bryan Robinson: So the fear factor wasn’t there?

Taylor: I was very blessed. I had zero fear. I was there in blissful euphoria in the right brain. Or I was in the left brain, preoccupied with trying to figure out what I needed to do to orchestrate a rescue.

Robinson: How did the stroke change your outlook on life? Or did it?

Taylor: One hundred percent. It shifted me away from believing that I was the center of my world and that “me and mine” is what matters. That whole circuit—the consciousness of me as an individual—went offline. In the absence of the focus of my life being me, I shifted into a consciousness and awareness that I’m a part of a greater humanity. I’m more open, expansive, and flexible to possibilities—as opposed to “here’s what I want and these are the steps I’m going to take to get what I want.” I function inside of a hierarchy of people above me and below me and I’m climbing a ladder. So I shifted away from the linear way of looking at the world and my relationship to it. I live more open to the possibilities of what can be and what is the best match for me.

Robinson: Is it true that your training and professional and personal experience have led you to believe that the right brain or authentic self is the brain hemisphere that endures even at death?

Taylor: The authentic self is the part of us that I firmly believe shows up in the last five minutes of our lives. When we’re on our deathbed, the left brain begins to dissipate. We shift out of all the accumulation and the external world because it’s no longer valuable. What is valuable is who we are as human beings and what we did with our lives to help others. We all face it, and I think that is judgment day. But I don’t think it’s the judgment of something beyond us; it’s the judgment of ourselves. Those of us who are tangled up in the external judgment are not slowing down enough to reflect on the essence of who we are as human beings and what we could be in connection with one another.

Steps You Can Take

It’s important to be supportive, compassionate and understanding in cases where a coworker loses their battle with COVID-19. Don’t hesitate to reach out to other bereaved colleagues, share your concerns and be willing to listen. If you’re an employer, make sure HR personnel are well educated about the process of death and dying. If you are an employee in an organization where COVID-19 deaths haven’t been acknowledged or discussed, speak to someone in authority who can take steps to provide training for all employees. Appropriate information makes sure employees receive emotional support during the loss. Otherwise social isolation can cut employees off from help when they most need it.

Now that hearing is widely thought to be the last sense to go during the dying process and that a blissful experience might replace fear, this information might be helpful to bring comfort to family and friends in their final moments. Perhaps being present with comforting words in the last hours in person or virtually can console the dying as well as loved ones. According to Dr. Elizabeth Blundon, lead researcher in the Scientific Reports experiment, “This is consistent with the trope that hearing is one of the last senses to lose function when a person is dying and lends some credence to the advice that loved ones should keep talking to a dying relative as long as possible.”

Complete Article ↪HERE↩!

Posted on

Death is part of life, and there is a lot we can learn from it

There are moments when disease and political protest suddenly make dead bodies far more visible, here are five lessons they can teach us.

By

I grew up around dead bodies. In fact, some of my earliest childhood memories are of dead bodies in caskets, and I mean dozens of corpses — not the occasional family friend or relative. The reason I saw so many dead people was because my father was a funeral director for thirty-five years in Midwest America.

Fast-forward now through some strange twists of fate, and I am currently the Director of the Centre for Death and Society at the University of Bath, the world’s only interdisciplinary research centre focused on death, dying, and the dead body. Human mortality looms so large in my upbringing and academic career that my younger sister, Julie, is on the record calling me the Overlord of Death.

As a result of these labours, I published a book called Technologies of the Human Corpse in which I cover the history and meaning we living humans assign to dead bodies by using different kinds of technologies: embalming, photography, rail transport, science museums, detention camps, radical life extension, the list goes on.

I have spent many years trying to understand what the bodies of the dead can teach us about the living, and here are some of the lessons I have learnt.

Dead bodies prove a once-living person died

When you see a dead body, you see causation. Some set of events or actions caused that dead body to be in front of you. Dead bodies do not just happen and require either an internal or external force (sometimes both!) to appear. Place a dead body in any situation and that situation automatically becomes far more serious.

One of the great 17th Century human inventions was the autopsy (literally ‘seeing for oneself ’), which stressed peering into the dead body to understand causes of death. The autopsy’s historical success is also one of the reasons we 21st Century humans find it so distressing when a cause of death cannot be determined.

How is an indeterminate cause of death possible, many people ask, with all our advanced bio-medical technology? And it is on this very ship 1,000 different CSI television programmes sailed…

But set aside the impossible forensics portrayed on popular television programmes for one minute, since we are living in a historical moment dominated by very real dead bodies with clearly defined causation.

Dead bodies from COVID-19. Dead bodies from police violence. Dead bodies from lack of access to necessary medical care. Dead bodies from interconnected social inequality that accelerates death, which leads me to lesson number two.

Dead bodies teach us about politics

Human corpses invisibly surround we the living on a daily basis, so much so that under normal conditions approximately 1,700 people die each day across the UK.

But there are moments when disease and political protest suddenly make these dead bodies far more visible. The current visibility of dead bodies due to COVID-19 and the global protests around George Floyd’s death in Minneapolis are examples when human corpses become a catalyst for action.

Whether it is the over 550,000 COVID-19 deaths from across the globe or the singular dead body of one black man in Minneapolis – these human corpses create new political meanings when answering some fundamental questions: why is this person dead and what political dynamics led to the death?

In many ways we have seen aspects of the current COVID-19 dead body politics before. In chapter 3 of my book I focus on HIV/AIDS corpses and the postmortem political changes produced by that pandemic.

So, for example, a key question during the height of the AIDS epidemic was whether or not it was safe to touch the body of a person killed by the HIV virus. It was safe, but it took many years for that answer to arrive.

Historical examples of dead body politics and race also abound. George Floyd’s death is part of a much broader US context captured in the book Without Sanctuary: Lynching Photography in America (2000) that documents how white Americans collected photographs of lynched black people and turned those images into collectible postcards. I highly recommend this book to any white person wondering why so many black communities feel such rage and anger about their dead.

We don’t always see the dead bodies until suddenly we do and then it is difficult to look away… until we do

I describe lesson three as part of a National Death Infrastructure into which dead bodies are absorbed by any nation’s very local but also quite global system for managing human corpses.

Any National Death Infrastructure includes systems such as local cemeteries and city morgues alongside international air transfer companies handling postmortem repatriations. It is when those systems overload that we begin to see the dead bodies and cannot stop seeing them since there are simply too many corpses to store. The dead bodies must be moved somewhere.

The recent COVID-19 experiences in many cities, New York and London in particular, demonstrate how pandemics can produce mass fatality events that quickly overload the everyday death infrastructure and create the need for rapid adaptation. In these moments of emergent adaptation, we begin to see how quickly the dead really do impact the world of the living.

But many of us do eventually look away and forget about the dead bodies. In the not-to-distant-future, I have a feeling that the dead bodies created by COVID-19 will be forgotten about, especially by the people who did not lose someone close to them.

Here is a quick test – how many people have died from AIDS? The answer is 38 million and counting. That is an enormous number of largely invisible dead bodies.

Dead bodies teach us not to hide the dead bodies

Virological determinism is the concept I use to describe the current US and UK response to the COVID-19 pandemic, that is, we humans blame the virus for creating all the COVID-19 dead bodies as opposed to recognising human failures (and here I mean government leaders as much as anything) at mitigating the contagion.

This is similar to the way we use technological determinism to explain human problems by saying, “…the computer did it!” as opposed to accepting responsibility for our own actions.

COVID-19 created a whole new linguistic dynamic for 2020’s human catastrophes – blame the virus. Name a problem and the coronavirus caused it. And while this is correct in some instances, the virological determinist rationalisation only goes so far with dead bodies.

The sudden surge in COVID-19 dead bodies that overloaded National Death Infrastructures everywhere meant hiding the bodies was not possible. Most countries face a real dilemma right now with care homes since the number of dead cannot be easily glossed over.

Governments may try (and some will surely succeed) but here is a key rule: one dead body makes any given situation a tragedy. Twenty-thousand dead bodies make the same situation a mass fatality catastrophe.

Any government that attempts to hide these dead bodies, and here ‘hiding’ can also mean ‘not acknowledging,’ faces an immediate problem – all attempts at obfuscating the dead will only make their loved ones and advocates work even harder to name the deceased.

There is a parallel here, too, with the George Floyd case. The video recording of his death resonated so deeply because it showed his death in clear-cut terms that meant nothing was going to hide his dead body from public view.

Finally….

Dead bodies teach us about grief and bereavement

I opened these five-lessons with my younger sister Julie calling me the Overlord of Death. Julie died on 29 July 2018 from brain cancer and I wrote at length about her death in the preface to my book. She died in Italy (where she lived), and took her final turn while I boarded a Milan-bound plane at Bristol Airport.

When I arrived at the hospice where she died I immediately asked to see my sister and was taken to her body. I spent a long time talking with Julie about how much everyone loved her and how much everyone would miss her.

I also suddenly found myself next to a dead body, similar in so many ways to my youth, but this time it was my sister. And sitting next to her dead body taught me what loss truly felt like, since I couldn’t just call my sister on the phone and tell her what was happening.

She was dead but that experience with her in the hospice meant that Julie would forevermore remain an active presence in my everyday life. And she is.

Complete Article ↪HERE↩!