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.

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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!

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.

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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!

Palliative-care advocate Kappy Flanders helped develop a blueprint for a good death

Kappy Flanders.

By Lisa Fitterman

Petite, fierce and focussed, Kappy Flanders became a warrior for palliative care because she wanted people to understand that dying was a part of living, as important a passage as being born, and something that could not be brushed aside because the thought of it was distasteful or frightening.

After all, as she once told a McGill University interviewer, “everyone is terminal at some point.”

Ms. Flanders, who described herself as “5 feet, 5 inches, with a push” and had an inordinate love of monograms, was plainspoken and hated euphemisms used in place of death and dying. “Passing,” for example, reminded her of gas, “at rest” was taking a nap, while “departed” meant “sorry, just missed her.” Instead, her style was to confront the issue head on, with no minced words and make the process as comfortable and informative as possible. She believed in giving patients what they wanted, as well as including their families, friends and caregivers in the conversation; they all needed to be aware of what choices were available for care, not just what their doctors unilaterally decreed was best.

She found her calling after the premature, painful death in 1991 of her husband, Eric Flanders, from lung cancer, and the very different death of her mother in Israel less than two years later from the same disease. While her husband’s life was extended for 18 miserable months by seemingly endless surgeries, chemotherapy and radiation, her mother’s death was comfortable and peaceful, palliated by a team that allowed her to die on her own terms.

In that same McGill interview, Ms. Flanders described learning about palliative care for the first time from a physician while sitting in a beautiful garden on Mount Scopus, overlooking the Dead Sea.

“After he explained [it] to me, I said, ‘We could bring you over to Montreal and you could explain palliative care to us and we could start something because it sounds so amazing,” she recalled.

The doctor looked at her in surprise. When Ms. Flanders asked why, he replied: “Well, Montreal is where palliative care started! You have the guru of palliative care there: Balfour Mount.”

When Ms. Flanders returned to Montreal, the first thing she did was call Dr. Mount, who had established the palliative-care unit at Royal Victoria Hospital in 1975 – the first ever in a teaching hospital in North America – and ask what she could do. Her subsequent volunteer and philanthropic efforts led to the creation of the Eric M. Flanders Chair in Palliative Care at McGill University (Dr. Mount was the first professor to hold it) and the McGill Council on Palliative Care, which brought together people from all walks of life to discuss the art of dying well.

She was the Herculean force behind the creation of the Canadian Palliative Care Initiative, effectively a blueprint to develop, enhance and promote a standardized system of palliative care across the country, and she was the co-creator of a series of lectures that forms part of McGill’s outreach in the community, including Mini-Med, Mini-Law and Mini-Biz.

After a diagnosis of cancer, Ms. Flanders died on June 27 just as she wanted: in her own bed at home in downtown Montreal, surrounded by family. There were no surgeries to determine what kind of cancer it was, or attempts to cut it out, or chemotherapy or radiation. She was 81.

“She always said that after a certain age, there would be no more investigations and no resuscitation. That became law as of this past year,” her youngest daughter, Elle Flanders, said. “She lived a good, full life. My sister Judith put it this way: It was a life in two acts.”

Marcia (Kappy) Morrison was born in London, England, on Nov. 12, 1938, the elder of Hyam and Doris Morrison’s two daughters. Her father worked in the ladies’ dresswear business that his own parents had begun; he and her mother, who was from Brooklyn and also from a family in the clothing business, met on a golf course, fell in love and settled down in Kensington.

When Marcia (as she was called) was but a toddler, her parents sent her to New York to stay with maternal relatives in order to stay safe during the Second World War and the German Blitz of London and other British cities and towns. While in New York, she would discover she had a cousin also named Marcia, who declared that the state was too small for the two of them. From then on, she was Kappy, a shortened version of her mother’s maiden name, Kappel, and so she was known for the rest of her life by nearly everyone. (Once, many years later, as she waited for hours in a Montreal Hospital’s emergency room without being called, she approached the nurse at the intake desk to ask what the hold-up was. It turned out she had been called, but as Marcia Morrison, which she hadn’t recognized as her own legal name at all.)

At 16, while still a student at finishing school in Lausanne, Switzerland, she met Mr. Flanders at a Friday night Sabbath dinner at her parents’ London home. He was handsome and suave, a Montrealer living in Australia at the time because his father ran a clothing company there, and he had come to London to do business with her own. Then and there, she decided he was the man for her. A few years older, he thought she was too young but she proved persistent, writing him letters from school that soon wore him down.

The couple married when she was 18 and first lived in Australia, where their first child, a daughter, was born. A second child, also a daughter, was born in London and finally, a son and a third daughter in Montreal.

Life was a whirlwind, albeit on a more conventional track when Mr. Flanders was alive. Indeed, Ms. Flanders didn’t really question it at the time; although she would have loved to continue her studies after graduating from finishing school, her own father could not understand why. To him, a woman either became a wife and mother or a secretary, nothing more, and so she became involved in Montreal’s Jewish community, eventually serving as president of the United Israel Appeal of Canada Women’s Division, the chair of the Combined Jewish Appeal Women’s Division and chair of the Israel Cancer Research Fund.

“She was never traditional, not even particularly motherly,” said Elle Flanders. “She had stuff to do, people to see and places to go, community work in the first act of her life. In the second act, her sense of self and her own interests took over.”

Bernard Lapointe, a palliative-care doctor who held the Flanders Chair from 2009 until last spring, said that somehow she managed to be a connector, collaborator and weaver all at once. The best example of what she meant to the movement, he continued, was an event she co-chaired last October called Projection Week, in which more than 100 events brought in people from worlds of social sciences, arts, religion, philosophy, food, education and medicine to discuss life, death and end-of-life issues.

“I’m a doctor but my contribution was a photography exhibit that was organized with the Institut de tourisme et d’hôtellerie du Québec on how to enjoy eating, the pleasures of life,” he said. “How to have the best death is an issue that has become magnified in this time of pandemic. How can we get people to have these conversations beforehand, given the inhumane way they were dying, brought to emergency rooms and so on without making their wishes known, dying powerless and alone?”

Accolades she garnered over the years included the Governor-General’s Meritorious Service Medal in 2003 and an Honorary Doctor of Laws from McGill in 2009. In 2014, she was inducted as a Member of the Order of Canada.

Even when she was dying, Ms. Flanders continued to be an extraordinary organizer, even instructing her daughters to send birthday cards to her friends on specific dates.

“If Kappy had organized Napoleon’s retreat from Moscow, all the soldiers would have got back alive, it would have been catered and the napkins would have matched,” Judith Flanders noted.

Besides her husband, Ms. Flanders was predeceased in 2006 by her sister, Andrea Bronfman, a philanthropist and the wife of billionaire Charles Bronfman, who died after being hit by a taxi in New York’s Central Park. She leaves her daughters, Susan, Judith and Elle Flanders; son, Steven Flanders; son-in-law, Michael Dickinson; daughter-in-law, Tamira Sawatzky; and grandchildren Emma and Allie Flanders.

Complete Article HERE!

Boom Time for Death Planning

The coronavirus pandemic has drawn new business to start-ups that provide end-of-life services, from estate planning to a final tweet.

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One day in April, as the coronavirus ravaged New York City, 24-year-old Isabelle Rodriguez composed a tweet she would send from the grave.

She wasn’t dying. She wasn’t even sick. In fact, her risk of contracting Covid-19 had been reduced after she was furloughed from her job at a Manhattan bookseller and retreated to her rural hometown, Callahan, Fla. But when she came across the poem “Lady Lazarus,” by Sylvia Plath, Ms. Rodriguez knew she had found the perfect words to mark her digital legacy:

Herr God, Herr Lucifer

Beware

Beware.

Ms. Rodriguez logged on to Cake, a free service that catalogs users’ end-of-life wishes, instructions and documents, and specified that she wanted the verse sent from her Twitter account after her death. “Any of my friends know I’m obsessed with Sylvia Plath,” Ms. Rodriguez said. “That was the best way to put my personality out there one last time.”

Through Cake, Ms. Rodriguez also filled out a “trusted decision maker” form, appointing her younger sister to call the shots should she end up incapacitated. She was still debating other important details: Did she want to be buried or cremated? If the latter, would her ashes be scattered, pressurized into a diamond, composted into tree food? Also, how much would it annoy the guests at her funeral if she requested that her favorite album, “Wolfgang Amadeus Phoenix,” be played on loop?

Ms. Rodriguez conceded that it might seem a little weird to be considering all of this in her mid-20s. On the other hand, young people around the world were getting incredibly sick, incredibly fast.

End-of-life decisions can be overwhelming, but making those choices when she was healthy gave her more control. Knowing that she’d ease the burden on her family if the worst happened also gave her peace of mind. “It would be easier for people around me to know what I want,” she said.

Before the pandemic, end-of-life start-ups — companies that help clients plan funerals, dispose of remains and process grief — had experienced steady to moderate growth. Their founders were mostly women who hoped a mix of technology, customization and fresh thinking could take on the fusty and predominantly male funeral and estate-planning industries.

Still, selling death to people in their 20s and 30s wasn’t easy. Cake’s team sometimes received emails from young adults, wondering if the site wasn’t a tad morbid. Since Covid-19, this has changed. Millennials are newly anxious about their mortality, increasingly comfortable talking about it and more likely to be grieving or know someone who is.

“The stigma and taboos around talking about death have been way reduced,” Cake’s co-founder Suelin Chen, 38, said. This has driven conversation across social media, spurred interest in deathfluencers (they will discuss how funeral homes are responding to the coronavirus but also whether your pet will eat your eyeballs) and increased traffic to end-of-life platforms. From February to June, people signed up with Cake at five times the normal rate.

Another new company, Lantern, which calls itself “the single source of guidance for navigating life before and after a death,” saw a 123 percent increase in users, most of them under 45.

Lantern’s tone is soothing and earnest, but not everyone takes that tack. Cake skews playful. It features a tombstone generator and suggestions like “Viking funeral” and “shoot my ashes into outer space.” New Narrative, an event-planning company for funerals and memorials, introduces itself with a wink: “We’re not your grandma’s funeral (… unless it’s your grandma’s funeral).”

It’s a tricky opportunity for these start-ups to navigate. “When you have a brand that’s directly interfacing with people in the throes of loss and grief, you have to walk a fine line,” said Liz Eddy, 30, Lantern’s co-founder and chief executive.

All these founders stress they’re not trying to capitalize on the coronavirus. But this hasn’t stopped anyone from pivoting hard toward Covid-19. The companies have created new forums and content on how to plan for death, honor the newly dead and grieve virtually. They have initiatives with major health care providers to disseminate their products more widely and formed new partnerships with influencers. The start-ups have even begun to coordinate with one another, sharing tips in a cross-company Slack channel called “Death & Co.”

They are all hoping the pandemic will be the event that turns end-of-life planning — from designing a funeral to writing a will and final tweet — into a common part of adulthood.

In 2012, a friend invited Ms. Chen and her fiancé to dinner and suggested they play an unusual party game: Write and share their own obituaries. “It’ll be fun!” the friend said. “They do it at Stanford Business School.”

At first, Ms. Chen was delighted by the exercise: Both she and her fiancé wrote, in the imagined past tense, about a music album they hoped to one day record. But when Ms. Chen started reading what she had written about her career, she was seized with panic and started bawling at the table.

“I just lost it,” she recalled. “It was confusing to me, because I loved my job. I was happy in the most obvious ways, but there was part of me …” She wasn’t sure how to describe the upswell of emotion.

Around this time, Ms. Chen was advising health care companies in commercial strategy. While interviewing last-line cancer physicians, she would constantly run a calculation in the back of her head: “If this treatment extends life by three months, how much money is it worth?” And yet she’d wonder: But at what quality of life? The system of prolonging life at all costs seemed out of whack.

Ms. Chen had also recently lost her grandfather, who died at 95 after a long period of suffering. He lived in Taiwan, where death in very old age is treated as a celebration, Ms. Chen said. And yet there had been a lot of family conflict around the experience.

Amid the pain and relief of her grandfather’s being at rest and the joyful commemoration of his life, Ms. Chen understood that she needed a new path. She didn’t yet know what it would be, but a few years later she met Mark Zhang, a palliative care physician and technologist, at an M.I.T. health care “hackathon.” The pair won first place at the event and went on to found Cake. The platform now includes resources and templates to help users write their obituaries along with guidance for how to get them published.

The venture-backed company makes money through partnerships and will eventually add fee-based services. The pandemic has been especially busy. Cake’s services, for example, soon will be integrated into the website of the British bank RBS/NatWest.

In April, Ms. Chen learned that Partners HealthCare, a large health care system in Massachusetts, was recommending Cake to all its members. Ariadne Labs, run out of the Harvard School of Public Health and Brigham and Women’s Hospital, also came calling. They wanted help distributing their end-of-life conversation guide beyond a relatively small audience of doctors and patients. They also wanted real-time feedback from a young and healthy audience like Cake’s.

Cake also teamed up with Providence Health System, a network of 51 hospitals and 1,000 clinics in seven states, to share Cake’s “trusted decision maker” form, the document specifying an individual’s medical preferences if the person becomes incapacitated. Through Cake, individuals could submit the form to their doctor without needing a notary and two nonfamily witnesses, which are often required but difficult to get under quarantine.

The next step is offering premium services, tailored to different types of users. “Are you here because you just lost someone, or because you just had a kid, or have an aging parent, or because a celebrity just died and you had an existential crisis?” Ms. Chen said. “We’re trying to automate based on what we know about the person.”

In April, Ms. Chen learned that her head of product’s grandfather had died from Covid-19. She had heard of people texting and messaging their condolences, but even email seemed inappropriate, overly impersonal. Unsure of what to do, she turned to Cake. Following an article from the site, Ms. Chen shipped her colleague soup, rolls and cookies with a note: If and when you’re ready, I’d love to hear more about your grandfather.

“In the modern age, the norms around supporting people who are grieving are not super clear,” Ms. Chen said. “It used to be that you belonged to a religious community or lived in a small town, but now we’re far away from where we grew up. We’re more secular.”

During the pandemic, condolence-related traffic on Cake doubled. To address the need, the company started a forum where users can crowdsource their questions and concerns.

Lantern provides its own grief and condolence content, including a “pandemic-proof” guide to “inclusively addressing grief at work.” In recent months, more people are grieving on the job, where the emotional distress for people of color over high Black and Latino rates of coronavirus infection is compounded by anguish over police brutality.

“Especially during Covid, it’s how can you incorporate the grieving process into 9-to-5 and day-to-day work?” said Alica Forneret, 31, who runs grief workshops and just started a namesake consulting agency to help companies address this question. “Employers, managers and H.R. need to understand there’s an extra burden on people of color and especially Black people when they sit down at their computer in the morning and are expected to engage and perform.”

For Ms. Forneret and other millennial founders, preparing for death and navigating grief during the pandemic has become a form of self-care. That has created new opportunities and partnerships. When Ms. Eddy pitched funders, she situated Lantern’s end-of-life services as an untapped market in the $4.5 trillion global wellness industry.

“We’ve been called a niche market,” she said. “But death and dying is possibly the least niche market out there.”

Corporations are rethinking the wellness programs they’re offering employees, Ms. Eddy said. They’re no longer just gym memberships and kombucha on tap. Studies have found that being able to talk about your mortality makes you a happier person and improves your relationships. The thinking, for employers perhaps, is that access to end-of-life services can make people happier (and more productive) at work.

This market potential is also why Near, a start-up that connects users with grief and end-of-life support services, like death doulas and art, sound, music and massage therapists, recently decided to seek investment. The company also moved its debut from September to June and is expanding its offerings to even more unconventional end-care providers like end-of-life photographers.

“Before Covid, we were looking at being a smaller platform. We’d be able to keep up with need through bootstrapping,” a Near co-founder, Christy Knutson, 36, said. “But the demand is far greater.”

This spring, a beauty writer and skin-care company chief executive, Charlotte Palermino, approached Lantern about co-hosting an Instagram Live. She had been watching her friends “panic post” death rates and was feeling increasingly anxious.

“I know people who got really sick, were suddenly on ventilators in their 30s,” Ms. Palermino, 33, said. She received such an overwhelming response from her followers that in June, she filmed a similar video for her Generation Z audience on TikTok.

In May, a large senior care company asked Ms. Eddy about a partnership. Ms. Eddy, who declined to identify the company, was intrigued but skeptical. In search of guidance, she did something that would normally be unexpected. She reached out to Ms. Chen at Cake, Lantern’s closest competitor.

Ms. Chen wasn’t surprised to hear from Ms. Eddy. In fact, she said, this kind of collaboration is frequent among end-of-life chief executives. “There’s a lot of texting and calling all the time: who are the good investors, the partners, give me the lowdown on these people,” she said.

The most common means of communication among end-of-life founders — and where Ms. Eddy went to reach Ms. Chen — is the cheekily titled Death & Co. channel on Slack. It was born in December during End Well, a conference about improving the culture, products and policy around end of life.

After one of the sessions, a handful of female founders gathered for an impromptu happy hour. They bonded over the rarity of having so many women running companies in the same industry, all them, in one way or another, trying to challenge the corporate, predominantly male funeral industry.

They discussed the difficulties of securing funding as womenand the challenges of trying to make a distinctly unsexy product accessible and affordable. Ms. Chen said a male founder had told her: “No one thinks about death. I don’t. I’m immortal.” Ms. Eddy said another had told her that he thought she’d be more successful if she created the “Tesla” of end-of-life services.

The women decided to start a WhatsApp group, which one of them named “Death Chicks.” A couple of months later, with more people wanting to join, including a handful of men, Ms. Eddy moved everything to Slack and renamed it Death & Co. For some months, the group was largely dormant. That changed in March.

“At the beginning of coronavirus, we came together and said this can all be reimagined with alternative, more modern solutions,” said Christina Andreola, 31, the founder of New Narrative, who joined the Slack channel in March. “My colleagues were asking: How can we team up to be competitive?”

The channel has around 70 members. They have worked together on a white paper about the funeral industry and Covid-19, raised funds for personal protective equipment for funeral directors and created short video guides for health care workers to talk about end-of-life options with their patients. Eterneva, a company that turns ashes into diamond jewelry, used the group to start a series of Instagram Lives about collective grief. LifeWeb360, which creates multimedia memorial scrapbooks, teamed up with New Narrative to create resource guides for planning virtual memorials.

The women have also freely shared connections and leads. Ms. Knutson of Near joined Death & Co. in March. She used the group to meet end-of-life photographers, a small and elusive set, and expand her provider list of death doulas, caregivers who help dying individuals navigate the end-of-life process.

“Overnight I walked into a virtual room with loads of smart, driven leaders who are building things that it would have taken me months if not years to hear about otherwise,” she said.

Not everyone is finding what he or she needs at Death & Co. Ms. Forneret, one of the few Black members, left after the police killing of George Floyd in Minneapolis in May. She said that the channel had done a lot of good for the industry and that she worked closely with Ms. Eddy and other members. But at this moment, she wants to align herself with other founders of color, she said.

In mid-June, Ms. Forneret participated in a Zoom panel featuring five Black entrepreneurs. The topic: how to have a “good death” in a racist society. The event was organized by Alua Arthur, 42, who runs a death doula training company, Going With Grace.

Ms. Arthur serves as an adviser to Cake and Near and has become a de facto spokeswoman for Black-owned death care businesses, especially in the last couple of months. She has become exhausted in this role and said end-of-life start-ups should be working harder to reach communities of color, which are largely underserved in the industry.

Even so, all of these founders share a mission: to democratize end-of-life planning and care. Ms. Arthur said the searchable database and broad collection of providers on Near were a step in the right direction.

Trust and Will, a company that bills itself as Turbo Tax for estate planning, charges a small fraction of what most lawyers do. Eterneva, the company that turns your loved one’s body into bling, just rolled out financing. Cake’s and Lantern’s basic preplanning services are free. Given that the average cost of a funeral in 2019 was $7,640, this kind of foresight could reduce the cost of dying. Because maybe you don’t want to languish on a ventilator or need a fancy coffin.

At the very least, when we can personalize our deaths the way we do our weddings and our wardrobes, we can feel a little more control over life’s greatest uncertainty. It’s something of a silver lining to this very scary moment.

“We’re never going back to the way it was,” Ms. Chen said. “That’s a positive thing — to accept the reality that we’re not immortal.”

Jennifer Miller is the author most recently of the novel “Mr. Nice Guy.” Her next book follows a year in the lives of first-generation college students.

Complete Article HERE!

Planning For The End Of A Life

Talking about death makes many of us uncomfortable, so we don’t plan for it. NPR’s Life Kit offers tips for starting an advanced directive to prepare for a good death.

By Kavitha Cardoza 

MICHEL MARTIN, HOST:

Thinking about death makes most people uncomfortable, which means many of us end up not planning. But Betsy Simmons Hannibal, a legal editor, says it’s like wearing a seatbelt.

BETSY SIMMONS HANNIBAL: We all wear our seatbelts even though we don’t expect to get in an accident on the way to the store. It’s just, like, something that we know is possible.

MARTIN: So buckle up. NPR’s Life Kit looked into preparing for the end, and reporter Kavitha Cardoza is going to walk us through a simple document called an advance directive.

KAVITHA CARDOZA, BYLINE: You don’t need to have a medical background or a lawyer to fill out an advance directive. You don’t even need a lot of time. And I promise it’s not too morbid. You can easily find an advance directive form online. There are different versions, but basically, it has two sections. The first is the most important – the medical power of attorney. Choose a person who can legally make health care decisions for you if you can’t.

PALLAVI KUMAR: Think about the person in your life who understands you, your goals, your values, your priorities and then is able to set aside their own wishes for you and to be a voice for you.

CARDOZA: That’s Dr. Pallavi Kumar, a medical oncologist and palliative care physician at the University of Pennsylvania. She says your medical proxy should be someone you trust who can handle stress because your loved ones will disagree on what to do, and it can be emotional. So you want to name someone who will carry out your wishes. Kumar says research shows when a caregiver sees a loved one die in the hospital under circumstances they believe that person never would have wanted, they’re in emotional pain for a long time.

KUMAR: And at six months and a year after death, these bereaved caregivers are still suffering from pretty severe depression and anxiety. There’s even some data to show that the survival for those caregivers is shortened.

CARDOZA: So think of an advance directive as a gift you’re giving your loved ones. The second section of the advanced directive document is called a living will. This part walks you through the general approach of how you want to die and what kind of care you want. Do you want to be resuscitated? Are you OK being hooked up to a ventilator? How do you feel about a feeding tube? Dr. Jessica Zitter is an ICU and palliative care physician in California. She says there’s no right or wrong decision. It’s personal.

JESSICA ZITTER: Someone once told me her father was – she says, he’s an old, crusty Italian man, and he said if someone else has to wipe my behind, I do not want to live. But there’s many, many others of us – if I was quadriplegic and still have an intellectual and emotional relationship with people, I don’t think I’d want to die.

CARDOZA: Even among patients who are very, very sick with cancer, less than half have had conversations about how they want to die. So it’s critical to share your wishes with your medical proxy and your loved ones as well as your doctor. Share a copy of the form with them.

Dr. Pallavi Kumar says the end of life is about more than just the medical aspect. When she knows a person’s priorities, that helps inform her treatment plan. For some patients, it might mean spending time at home with family. For others, it means trying every treatment possible for as long as possible.

KUMAR: They would say, if you’re telling me that a chemotherapy could give me another month, I want that month because that’s another month I have with my 6-year-old.

CARDOZA: While no one can predict when they’ll die, an advance directive can help you plan for how. It’s not a guarantee but a safety net for having what Doctor Zitter thinks of as a good death.

ZITTER: In order to figure out what a good death is, you have to figure out what a good life is and what living well means to you. That’s the only way to know how to die well because actually, they’re kind of reflections of each other.

Complete Article HERE!

Celebrating a life well-lived — one year later

“The goal is not a good death. The goal is a good life — all the way to the very end.”

— Atul Gawande, M.D., surgeon, writer and public health leader

By rclark

One year ago on this date, July 11, 2019, my wife, Norma, was freed from the prison of Alzheimer’s disease. So exactly one year later it is appropriate to celebrate Norma Houghton’s life and share with my readers personal reflections on my recovery.

You who have been with me all the way from diagnosis in 2010 to last summers’ final breath know the documented story of a lady who gave an extraordinary gift to sacrifice her privacy to help others. The sadness in over 10 years of seeing her drift away was softened by the concern of many readers, as well as numerous caregivers.

My restoration and renewal following our 57 years of marriage has been facilitated in part by periodic messages this past year from her hospice caregivers from Compassus. A healing journey of recurring memories was predicted by their periodic communication.

Norma’s good works have been recognized with the Norma A. Houghton Staff Award in the Birthing Center of Monadnock Community Hospital and an annual scholarship for a graduating student from one of our three local high schools choosing higher education in nursing.

As past co-chair of the Western New Hampshire Walk to End Alzheimer’s, I have been given the satisfying task of using my wife’s story as a monthly “mission moment” to cheer on the current walk committee through the challenges of planning a major event during the pandemic.

So her legacy lives on and, though grief has come to my life, spiritual growth and a new life have also emerged as predicted and aided by Compassus. I can now see that hospice is not about dying but helping caregivers and patients live life to the fullest.

When our time on Earth comes near a close, the choice of hospice provides a better quality of life than if aggressive end-of-life medical care were applied. Dr. Gawande’s classic treatise, “Being Mortal,” about “medicine and what matters in the end,” is on point.

You may remember an early column about full body donation for medical education. I expect next week to travel to Boston University Medical School to bring Norma’s ashes back to Jaffrey. Plans are being laid at the United Church to develop a memorial garden as a final resting place for beloved members of the church.

If you want to find out more about hospice services, visit the hospice and palliative care organization (www.nhpco.org). It is not true that hospice is only for the final days or hours of life. Hospice is about helping patients and their families have the best possible quality of life as they can when life expectancy is limited.

Usually a patient’s doctor and the hospice medical director work together to offer experience with hospice criteria, guidelines and clinical judgements. Hospice Medicare coverage includes nurses, other caregivers, medicines, supplies and equipment, with little or no cost to patients, families or caregivers.

Clearly for me hospice care provided even more than medical, emotional, social and spiritual support. I find myself surrounded with family and friends who share my loving memories of Norma and continue to offer peace and support as I come to this special date.

Compassus gave me positive relief and strength during a time of extended grief, allowing me to create appropriate remembrances and lasting reminders of a life well lived. Since they suggested a celebration on the anniversary of my loved one’s death, isn’t it a joy that my July column is published as a tribute on this very date!

“Enjoy life. Have fun. Be kind. Have worth. Have friends. Be honest.

“Laugh. Die with dignity. Make the most of it. It’s all we’ve got!”

— Ricky Gervais

Complete Article HERE!

BIPOC in Death Care

The voices of Black, Indigenous, and People of Color (BIPOC) need to be amplified so we are going to use our newsletter and social media platforms to aid in their sharing. Here are a few resources for us to explore racism, privilege, and bias in death care:

Sayin It Louder: A Conversation About “A Good Death” in a Racist Society.

A conversation among death care professionals Alua Arthur of Going with Grace, Lashanna Williams of A Sacred Passing, Joél Simone Anthony of The Grave Woman, Alicia Forneret, Oceana Sawyer, and Naomi Edmondson.

 

Watch the recording of their discussion by clicking here.