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.

By

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!

Patients overestimate the success of CPR

Doctors should discuss CPR to clarify and inform patients before they consent to it, say researchers

Patients and the general public appear to significantly overestimate the success of cardiopulmonary resuscitation (CPR) and underestimate the negative impact it can have on a person’s health, suggests research published online in Emergency Medicine Journal.

US researchers have therefore recommended clinicians discuss CPR with patients and their loved ones to clarify the practice’s success rate and the real benefits and risks involved before patients or their families are asked to consent to it.

Emergency physicians often talk to patients or their families about end-of-life care and the outcomes of resuscitation efforts. Patient and family preconceptions of CPR can have a significant effect on the tone of discussions and the subsequent medical care provided.

Previous studies have shown that most lay people overestimate the success of CPR and underestimate its morbidity but no studies on the subject have been carried out amongst patients and visitors in an emergency department.

Patients in previous studies have cited television as a large source of their belief that rates of survival after CPR vary between 19% and 75%, whereas actual rates of survival of CPR range from an average of 12% for out-of-hospital cardiac arrests to 24-40% for in-hospital arrests.

Therefore, a team of researchers from the University of California in the US carried out a survey of 500 emergency department patients and their companions to assess their expectations and examine whether or not variation in information sources, prior exposure to CPR, and healthcare experience would influence peoples’ predicted CPR success rates.

The survey was carried out amongst adults in the emergency department waiting area within a tertiary care hospital in Sacramento, California, between June and September 2016.

An “optimism scale” was created to reflect expected likelihood of survival after CPR, or CPR success, under several sets of circumstances.

Results showed that of the 500 respondents, more than half (53%) had performed or witnessed CPR, and/or participated in a CPR course (64%).

Television was the main source of information about CPR for around 95% of respondents.

At least half of the people interviewed estimated the success rate of CPR as being more than 75% in all situations. The estimated CPR success rates were unrelated to age, sex, race, spiritual beliefs or personal healthcare experience.

The vast majority (90%) of people interviewed said they wanted to receive CPR if it was possibly needed.

Comments also revealed that only 28% of respondents had discussed CPR with a physician, but most participants believed that a physician should talk to them about their CPR preference.

The study had some limitations such as the fact that it took place at a single institution and for convenience, the sample only included English speakers which limits the generalisability of findings. Some participants might also have been distracted by illness or the emergency department waiting area environment.

Nevertheless, the researchers conclude: “Patients and visitors to an emergency department, regardless of prior healthcare or CPR experience, overestimate the likelihood of success with CPR.

“These findings should prompt emergency department physicians to initiate discussions about resuscitation with their patients while also providing them with key information to help facilitate informed decision-making.

“When discussing CPR preferences, emergency department providers should focus on true rates of survival and outcomes in any shared decision-making conversation and should not assume that a patient or companion with healthcare experience will have realistic expectations.”

Related 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!

Virtual Grieving

– When Pandemic Death Stares Us In The Face

Virtual grieving of a colleague who dies from coronavirus can be difficult for everyone in the … [+] workplace
by Bryan Robinson

“COVID-19 robbed us of our goodbyes,” says Dr. Joy Miller of Peoria, Illinois, “My friend was suddenly gone without warning. How do I say goodbye? I can’t travel. We aren’t allowed to gather, and I will never see him again. I don’t know what to do. I feel lost and empty, as if my heart is being ripped from my body.”

Grief is a lonely and isolating experience in and of itself. And human contact is essential for healthy and full psychological closure. With added self-distancing during the COVID-19 pandemic, grief can be compounded and prolonged. In the midst of heartbreak, Miller finds the loneliness of grieving compounded by the double whammy of self-distancing. Unable to embrace or be embraced by those who share her loss, she must draw upon her own creativity and resources for comfort.

Miller—founder and CEO of Resliency 2020 and Joy Miller & Associates—isn’t alone. Amidst the COVID-19 pandemic, many colleagues and friends are dying in isolation. And coworkers and families are mourning from afar. Not only are they robbed of their colleagues, they are robbed of their ability to gather and mourn their losses with others, which is leaving an empty, unsatisfying feeling from a lack of full closure. Studies show that during bereavement, having satisfactory grief scaffolding and a support person navigating post-death formalities, plus satisfactory information about the death decreases risks of post traumatic stress disorder (PTSD), depression, and prolonged grief disorder (PGD).

Without appropriate bereavement scaffolding in place, many grievers are at risk of PGD and complicated grief (CG)—a syndrome characterized by preoccupying and disabling symptoms that can persist for decades. Affecting between 10 to 20% of mourners, CG can lead to the difficulty of accepting the death of a loved one, yearning or avoidance, sadness, somatic distress, and social withdrawal.

“In my faith of Judaism, everything is mandated to occur in a specific way,” says Miller. “At a specific time, with a specific prayer. I always knew what to do. Right now, I would normally be at the visitation, making food for the family, standing at the graveside and helping put dirt on the grave until each particle covered my friend completely. I would say Kaddish, and I would mourn, and in eleven months we would return to once again celebrate his life, and place the stone on his grave. But now I can do none of that.”

The pandemic has mandated that mourners of all faiths cannot have their traditions that have helped them heal for generations. Like so many other people in this country and around the world losing their loved ones to COVID-19, mourners must find new ways to grieve and process. Some dying hospital patients are saying their goodbyes to loved ones by FaceTime or other virtual devices. This modality isn’t ideal, but it’s the only option for now to contain the community spread.

“I am faced with death without normality,” says Miller. “This is the new normal for right now. Each of us must find a new way to enter this path, but I am choosing to discover new rituals that help me face my sadness. Ironically, I teach a graduate-level course on grief and loss. It seems to open my heart even deeper as I contemplate the stages of death and dying, joy and pain and healing and peace with my students.”

Although there are no adequate substitutes for human connection during grief, Dr. Miller came up with nine tips to help you grieve your departed colleagues from afar during the new normal:

  1. Go through photos. Miller is a photographer, so sorting through old captured pictures has helped her reminisce about past celebrations, joyful moments, funny stories and the love she shared with her close friend. But you don’t have to be a photographer to create a montage of photographs to help you heal, and you will see how the act of reminiscing about your colleague can bring peace and healing.
  2. Write down your feelings. Writing helps us discover some peace, sort our feelings, and document what we’re not allowed to share at the mortuary, the visitation or the cemetery. It brings closure and helps us find clarity. Journaling your thoughts and feelings down on paper can be a huge unburdening. You might also consider writing a goodbye letter to your departed coworker, saying what you wish you could have said directly and how much he or she changed your life for the better.
  3. Allow yourself to cry. Miller remembers tells her grieving clients that each tear brings you closer to healing. The process is cleansing and tears help us move toward a new reality. Acceptance means realizing that these tears may be present for a long time.
  4. Meditate. Meditation, prayer or contemplation can help you face and release your feelings of loss and bring comfort. If you need guidance in meditating, you can Google “apps for the bereaved” and find many support resources online.
  5. Reach out to others. Social distancing platforms—such as live streaming of funerals—are temporary solutions until mourners can embrace the comfort of each other’s arms. Meanwhile, take advantage of social devices such as FaceTime, Zoom or Skype to share stories with others who are also mourning the departed. Talk about the times that were sacred to you. Discuss how your colleague helped you change your life and the impact he or she had on your growth.
  6. Set up a memorial page. A memorial page on Facebook or other social media allows you to connect with employees who share your loss. Friends and family can post their own tributes and condolences. And reading through the online messages can provide comfort.
  7. Focus on the positives. It is called “anamnesis”—a way to remember the positives in this painful loss. Each person is in our life for a reason, a purpose, and it all has meaning. Ask yourself what this person taught you and what you want to keep from your life together.
  8. Consult a grief counselor. If the grief process is severely interrupted to the point that you could be having prolonged or complicated grief, contact a grief specialist. During the pandemic, therapists are conducting virtual sessions by social media, so it’s possible to get immediate support.
  9. Let there never be the final death. Author David Eagleman said, “There are three deaths. The first is when the body ceases to function. The second is when the body is consigned to the grave. The third is that moment, sometime in the future, when your name is spoken for the last time.” Consider making a vow that there will never be that final death, and speak of your departed colleague often in your head and in your heart.

On September 10, 2020 Dr. Joy Miller co-hosts Resiliency 2020, an international live streaming webinar to support the mental health needs of front line pandemic workers.

Complete Article HERE!

Managing grief different, difficult for seniors

By BECKY RASPE

Grief can be a difficult process for anyone, but seniors tend to be faced with difficulty in healing after a profound loss.

Diane Snyder Cowan, director of Western Reserve Grief Services in Cleveland; Carolyn Lookabill, director of marketing at the Lantern of Chagrin Valley in South Russell; and Erin Matteo, social work manager and bereavement coordinator at Wexner Heritage Village in Columbus, said grief manifests differently for each person.

“Grief is a normal, necessary, natural reaction to loss no matter the age,” Cowan said. “It is unique to each person and grief is not linear. You don’t move through stages or get over it. It’s a total body experience impacting the emotions, cognition, behaviors, spiritual beliefs – basically the heart, mind and body.”

Lookabill added, “We all don’t display grief in the same way. It’s not always tears – it could be difficulty eating or sleeping. There is no normal, and that can be a difficult concept in a communal setting. It’s something other residents might not understand about each other.”

Matteo added experiencing grief following the death of a loved one can be compounded by other losses a senior could be experiencing.

“One thing that is specific to seniors is the loss they experience is not just the loss of a partner or friend, they experience loss of independence, ability to do things they enjoy or sometimes the loss of physical or mental capacity to do things,” she said. “So, the sheer magnitude of things they can experience directly related to their age imposes a lot of different barriers to quality of life. It’s important to understand the degree of their loss and the changes in their lives on top of that.”

Though grief affects people of all ages, it can affect seniors in ways unique to the age group.

“Aging adults often think about their mortality,” Cowan noted. “There are losses that occur as part of the natural aging process. Some aging adults are isolated, especially now during the pandemic. Many experience several losses within a short period.”

Matteo added, “A lot of them have that anticipatory fear, that they might be next or their time is coming too. When a senior loses someone, consider that it is not their first rodeo. They have this understanding that they are getting up there in age and have seen it happen.”

If left unchecked, unresolved grief can negatively impact a senior’s wellbeing.

“For the most part, that person begins to withdraw,” Lookabill said. “They begin to not respond to overt attempts by neighbors and friends to be supportive. They withdraw to the point where they become more isolated and not even get dressed or cook their meals. Their nutrition and language skills can suffer too.”

For a senior struggling with these emotions, it’s important to not invalidate their feelings, Matteo stated.

“When someone in their 80s and 90s loses a partner, that loss is very significant because a lot of those seniors have been married for over 60 years,” she explained. “One of the things people like to say is ‘they were really old’ or ‘they lived a good life.’ When you say those kinds of things, you minimize their grief for the rest of the family to be able to move on and be comfortable.”

Family members should be prepared to approach the situation with an open mind and willingness to listen, the professionals said.

“The family member doesn’t even have to speak,” Lookabill said. “You don’t have to say anything. Your presence is supportive. It’s good to be available, even if you don’t fully understand the situation. They can share the grief that they have in common. It doesn’t have to be a major response, just be there in the moment.”

Cowan said, “If family is available, offering an open heart, love and listening is the first step in supporting a grieving loved one. It’s important to remember that older adults may need more time to become aware of and express their feelings.”

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!