Month: December 2020

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How To Grieve A Pregnancy Loss

Pink blue ribbon awareness (isolated with clipping path) bow color for newborn birth defect, Sudden Infant Death Syndrome (SIDS), pregnancy Loss on helping hand (Pink blue ribbon awareness (isolated with clipping path) bow color for newborn birth defe

By Susan Devaney

“I think it’s very common for a woman to feel their loss isn’t deemed as significant as the death of someone who lived and breathed on earth,” Julia Bueno UKCP, a psychotherapist specialising in pregnancy loss and author of The Brink of Being, tells British Vogue of perinatal loss. “The pregnancy loss community and charities have been fighting this misunderstanding for decades now, and are slowly making progress. Connecting with others who have been through pregnancy loss can often be very nourishing and a reminder that perinatal loss is a profound experience.”

This year, many high profile women, including the Duchess of Sussex, have openly discussed the pain of pregnancy loss. Nevertheless, it’s a topic that’s still shrouded in shame and fear, leaving some women to feel that their perinatal loss isn’t significant enough to be fully grieved. “Clinically, we also know miscarriage can increase the risk of serious anxiety, depression and trauma, so I would encourage everyone to take their feelings seriously,” says Bueno. “The Miscarriage Association and Tommy’s are both great resources of information and support.”

Below, Bueno shares her learnings on pregnancy loss and grief.

What are the stages of grief a woman may experience after having a miscarriage?

When it comes to bereavement, we often talk about someone “going through certain stages” but Bueno doesn’t believe this is the case. “I don’t believe there are ‘stages of grief’ for any bereavement, including that of a miscarriage,” she says. “Therapists tend to think more of feelings coming and going in grief, rather than ‘moving through’ them. It’s common for a woman to feel a number of things during the days, weeks and even months after her loss. This may be heightened after repeated miscarriage. You may feel a tremendous sadness, of course, at what you’ve lost, but also anger at the injustice of it – or even anger at the lack of understanding that often comes your way.”

According to The Miscarriage Association, more than one in five pregnancies ends in miscarriage. Yet, pregnancy loss “resides at the bottom of the pecking order of grief in our culture”. “A woman may also fear her future fertility, and of getting pregnant again – no pregnancy after miscarriage is easy,” continues Bueno. “But also it’s very common to feel envious of other pregnant women, although this is particularly tough to talk about.”

What can be done to help ease grief?

“Most importantly, after a pregnancy loss you should allow herself to grieve,” says Bueno. “Our culture has, historically, minimised the experience and grief of miscarriage and this can send a message for women to ‘get on with it’, or at least not to grieve too long. But the grief of a miscarriage is real and like any other grief, and although a woman mourns a ‘baby-to-be’, she may well have had a very strong bond with it.”

For this reason, in Bueno’s book The Brink of Being, she discusses the ‘child in mind’ that “emerges while trying to conceive a pregnancy, and probably well before then, too. This child, and all the future family life that went with it, needs to be mourned.”

While grieving, engagements may arise that prove difficult. “You’re entitled to protect yourself from hurtful situations – such as going to a baby shower, and to take time to get back on your feet. This may mean asking for time off work, and time out of socialising, too,” says Bueno. “You may also need to let your body recover too – miscarriages can be physically gruelling, especially if late in gestation (a miscarriage can happen up until 23 weeks and six days of a pregnancy). They can involve excruciating physical pain and weeks or even months of bleeding.”

What advice can you offer to a friend who has experienced a recent miscarriage?

Sometimes, it’s hard to know what to say after a family member or a friend has experienced pregnancy loss. “I wouldn’t offer advice. I would listen,” says Bueno. “Asking a recently bereaved woman, ‘Tell me what happened’ would mean so much to many, who I have spoken to over the years. Having a compassionate curiosity above all else would be wonderful. Most women want to tell their story of their pregnancy from the start, until the ongoing end of it.”

How can you support your partner as they grieve, too?

Pregnancy loss also greatly affects the couple – not just the woman who carried the child. “Male partners are often ignored after pregnancy loss because they feel they have to ‘step up’ and be stoic while their pregnant partner suffers physical and emotional pain,” says Bueno. “Others assume they are coping well because they are doing this, and as a result they tend to focus on the once-pregnant woman. Also, men tend to grieve in ways that look differently from women – they ‘do’ rather than ‘feel’, and this can be misinterpreted as them not feeling so deeply.”

She continues: “In my experience, female partners are often assumed to be good at coping, just by virtue of the fact they are a woman – so they are ignored, too. Partners can be out of sync with their feelings, and being open and honest with each other about them is so important if they are to help each other.”

Complete Article ↪HERE↩!

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What you need to know if you or a loved one requires end-of-life care

By Ben Poston, Kim Christensen

Conceived as an end-of-life option for terminally ill patients, hospices provide palliative care, medications, nursing services and counseling for those diagnosed with six months or less to live.

The number of U.S. hospices has roughly doubled in the last 20 years, as more for-profit providers vie for a share of $19.2 billion a year in Medicare spending that covers hospice care. More than 1.5 million Medicare beneficiaries now receive care from some 5,000 hospices, nearly a quarter of them in California.

While hospice has been a godsend for millions of dying Americans and their families, a Times investigation found that intense competition for new patients has spurred billing fraud and other illegal practices, including falsified diagnoses and kickbacks to unscrupulous doctors and recruiters who target prospective patients at retirement homes and other venues.

The Times also found hundreds of instances in which California hospice patients were harmed, neglected or put at serious risk, their mistreatment sometimes exacerbated by serious gaps in government oversight.

What are the benefits of hospice care?

Hospice is intended to provide comforting, compassionate care and a range of support services for terminally ill patients and their families. In addition to nursing and medical care that includes pain management, prescription drugs and supplies, patients receive spiritual and emotional support, help with personal hygiene and respite care for family caregivers.

Most hospice patients receive care in their homes, including assisted-living settings and nursing facilities.

How do I choose a hospice?

There’s no set formula for choosing a hospice, although experts suggest discussing options with your personal physician and seeking recommendations from friends and relatives whose loved ones have had good experiences.

You should also interview any prospective hospice, asking questions about its licensing, which is required by the California Department of Public Health; whether it is certified by Medicare; when it was last inspected and whether violations were found; the range of available services; the makeup of the hospice care team and the roles of its doctors, nurses and others; and the role the hospice expects family members to play in a patient’s care plan.

Several industry and advocacy groups offer online guidance, including the National Hospice and Palliative Care Organization, which provides a worksheet and a list of questions.

How do I know if a hospice is reliable?

There is no one place where consumers can go to make a comprehensive comparison of local hospices — a gap that patient rights advocates have long criticized.

A variety of online sources provide information about hospice care, but each has limitations. Medicare’s hospice comparison site allows consumers to search for providers by ZIP Code or name, but has scant information about quality-of-care issues and inspections.

The California Department of Public Health has a searchable tool called Cal Health Find Database, which provides users with inspection reports when serious violations are uncovered back to 2017. It also allows consumers to compare quality metrics of up to three hospices at a time, but it doesn’t provide a rating system for providers. The results of inspections by accrediting agencies are not included on the site — a significant problem for consumers in California, where more than 80% of hospices contract with accrediting agencies rather than the state to conduct certification inspections once every three years.

Another resource that is more difficult to navigate is an interactive site maintained by the Centers for Medicare and Medicaid Services. The site includes copies of complaint investigations and a look-up function that allows users to compare the number of serious violations at hospices in California and other states.

What red flags should I look for?

Be on the lookout for any hospices that have been cited in recent years with serious violations. In the language used by Medicare, these include “condition-level” deficiencies or “immediate jeopardy” situations, which are considered the most severe. Also, hospices can be cited for failing to certify that patients are terminally ill, which is an indication of possible fraud.

If you have the name of a hospice administrator, which can be found on the state public health department’s website, you can find out if that person has been excluded from receiving federal healthcare payments on a site run by the U.S. Department of Health and Human Services’ Office of Inspector General.

If I’m not happy about my hospice, where do I complain?

If you can’t resolve your issues with the hospice, the California Department of Public Health investigates complaints, which can be filed online — but not necessarily with satisfying results.

You may also file a complaint about Medicare providers directly with the federal agency or with the California Senior Medicare Patrol, a federally funded statewide hotline to help Medicare beneficiaries prevent, detect and report fraud.

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Writing Into and Out of My Long-Distance Grief

Mourning on a wintry day at the end of a year that has all been winter.

By Dur e Aziz Amna

I walk out, steering the stroller with icy fingers. I pass the house that always appears as if someone is moving in or out, the gray house with a garage full of ugly toys, the white house with an attractive couple who dine every day at 7 p.m., which I know because I peek in on my daily quarantine walks, comforted by the sight of the woman’s top bun and the man’s beard as they sit across from each other at a farmhouse table.

Today is winter. A crisp, cold, sunny day, the kind that makes you think for a few hours that perhaps this — the end of the year in Michigan — isn’t too bad. But when I reach the park, it is all sorrow. Each blade of grass, shimmering in December light, is sorrow. The crackle of each remaining leaf is sorrow.

Muslims recite the azan — the call to prayer — in the ear of every newborn, but we leave it out of the final prayer for the deceased. The point is that our time here is as brief as the moment between the call to prayer and the start of prayer. Now, in the park, the journey each drop of melted snow makes from branch to wilted grass is sorrow.

For those, like me, living far from home, there is a worry so common it is banal: the Call. The call that comes when a loved one is hurt or dying. We brace ourselves against it, convinced that anticipation is inoculation against grief. To this day, I sleep with my phone on silent only when I am back in Pakistan; home is the place where late-night calls don’t seize the ground beneath you.

In Michigan, when the phone rings in the middle of the night, it’s usually just a wrong number or a relative who thinks America is five hours behind and not 10. Sometimes though, it is a sunny morning, the house smells of coffee and the baby is playing with tiny toes when the phone rings, and something in you, that animal that senses danger before it manifests, tells you that it’s bad news.

My husband once asked my father if he believed in saints. Abbu responded that if there was any saint in his life, it was his last surviving uncle, Chacha Jee. On Dec. 1, Chacha Jee died, his lungs, liver and heart collapsing in quick succession in an emergency ward in Pindi, Pakistan.

The official diagnosis was pneumonia, but the symptoms were close enough to Covid-19 for them to transfer him to the Covid ward. No family was allowed to visit him in his final moments. Globally, 1.6 million people have died of the disease this year. Many were also isolated from their loved ones in their last days, even if they lived in the same town, let alone across the world.

Faiz Ahmad Faiz, the famous Urdu poet, wrote that during his years in prison, time collapsed so that “the occurrences of a century seem to be like the happenings of yesterday.” Grief, particularly of the remote kind, seems to work in the same way.

Suddenly, I am 5 again, and Chacha Jee and his wife, Baji, have come over, armed with the Sandwich House they painstakingly made for our birthday parties. There is a garden of lettuce leaves and cottages made of sliced bread. In the middle stands Mr. Potato, on legs of toothpicks, with a bit of carrot for a nose.

Then I am 9, spending sticky summer afternoons at their house, Chacha Jee making the hot chai such a hot day calls for.

Then I am 25 and sharing sly smiles with my brothers because Chacha Jee is singing his favorite song: “Tu Ganga ki mauj main Jamna ka dhara /Ho rahega milan yeh humara tumhara.” (You are the wave of the Ganges, I am a stream of the Jamuna /Our union is bound to happen.)

These are the happenings of yesterday, yet far more real than the ephemera of sun grazing the backyard, my foggy breath, my mother’s voice over WhatsApp, saying that Chacha Jee has passed.

My father was only 30 when my grandmother died, and often relatives would try to reminisce about her with him. Abbu, resolutely private in his mourning, firm in his belief that one takes grief to the prayer mat and leaves it there, would quote the poet Ahmed Faraz. “Dukh fasana nahi ke tujh se kahen /Dil bhi mana nahi ke tujh se kahen.” (Neither was my grief a story, that I may tell you /Nor did my heart agree, that I may tell you.)

In the style of a child forever looking up to her father, I aspire to that, but that is not how I process grief. Instead, even as I am on the phone, I think to myself, I will write into and out of this.

“What skies this earth has inhaled,” wrote Ameer Minai, and Chacha Jee was that — a benevolent sky over everyone who knew him. Born in a rural Punjabi village where men rarely spoke to children and never showed affection to their wives, Chacha Jee carved out a path of his own. I remember him arranging saucers, pouring out cups of chai for Baji and himself. Complimenting the little frocks my cousins and I wore for Eid, when every other man would consider that frivolous.

The sun is now setting upon that world, but without a doubt, that world was there. I saw it — where the worth of a man was his brooding silence, his coldness, his anger. There was that line of fathers, haughty and unforgiving. And there was that childless father of us all, Chacha Jee, laughing his shrill, girlish laughter, joking with everyone, treating even the youngest child with wonder and love and curiosity.

He was a captain in the Pakistan Army. Sent to Germany for training, he tricked an American officer into believing the pungent taramira oil he used to smooth his hair was a Pakistani delicacy to be enjoyed by the spoonful. At 82, he drove himself from Pindi to our home village in Talagang every other week, although my love for him will not allow me to sugarcoat this: Chacha Jee was a truly terrible driver, with a recklessness that was not complimented by capability.

If Chacha Jee was modern enough to have shunned those older, tormented ways of being, he was still hospitable in a way that only someone brought up in the communality of the village could be. He settled in the city but brought the wide-open doors of the dhok with him. When I had a fever and my mother was not around, Abbu deposited me at Chacha Jee and Baji’s house for the night, because there was no one in the family who cared for the sick as they did.

A Palestinian friend tells me that in Arabic they say, “Ili raba ma maat”: The one who raises others never dies.

Now I am a mother, and I find that grieving with a child is odd. The world tumbles on its axis, and yet complete despair seems impractical, because there is a hungry mouth to be fed, a pair of curious eyes watching as you weep. That day we learned that Chacha Jee was gone, my youngest brother, who was visiting, and I kept seeking the baby, not for catharsis (babies are terrible, squirmy huggers) but for comfort. He is new. He has years and years and years, inshallah. He will go places, to spots in time, where none of us will.

“Your absence has gone through me,” W.S. Merwin wrote, “Like thread through a needle. /Everything I do is stitched with its color.” And so it is with being a parent; every feeling, high or low, is refracted through that identity, considered in the context of that tiny body lolling around on the lime green quilt. Chacha Jee, then, is another part of my life that I will not be able to share with my children. I add him to the tablet full of real things — people I touched, places I trod — that will live on only as stories. And yes, stories are important. I know that because why else would I be here with you?

My mother tells me of a time when she visited her grandfather. He was remembering the people he had known in his life, laughing mostly to himself as he relayed this story or that. Ammi sat with him, mostly out of deference, slightly impatient because she didn’t know any of the people he was talking about. Suddenly, she realized that he was telling her all this because everyone who did know the people in his stories was gone.

Children can be brutal to the past. My brother remembers standing in a row for our grandfather’s funeral prayer and having a 4-year-old cousin whisper to him, “I bet it’s going to be Grandma next.” Everyone was together in the village for three days of mourning, during which the little kids ran around, hopping from one house to another. For months they remembered those days with extreme fondness. “We had such fun at Grandpa’s funeral,” they remarked.

But I am obsessed with my parents, and given the way these things go, there is a decent chance that my children will be, too, not for my sake but because that is where any honest attempt at understanding their own selves would lead them. Lives should be led in the present, the eye has to look to the future, but all meaning is past.

So where does that leave us, on this wintry day at the end of a year that has all been winter? In the past, I have been embittered by mourning deceased family members from afar, while everyone back home gets together and seeks catharsis in crowded rooms. This time, we are all far apart.

In 2020, the congregation of grief is online. We call one another and spin stories, which we then rehear from others and wonder: Did this story start with me, or are we all saying the same things? On the family thread, I send a screenshot of Chacha Jee laughing with his mouth wide open, the baby curled up in tummy time in the top right corner. A cousin quotes Khalid Sharif: “Bichra kuch iss ada se ke rut hi badal gayi /Ik shakhs saray shehr ko veeran kar gaya.” (He left, and the season changed /He left, and left the city desolate.)

For my brother, more resolute in his faith than I am, the consolation is clear. As Muslims, we believe that Muhammad will never abandon a lover of Muhammad. And Chacha Jee loved Muhammad, the cousin and daughter and grandsons of Muhammad, the followers of Muhammad, and beyond. Chacha Jee will be at peace. It is us, the living, that I worry about.

I worry for Baji, who will wake up without a partner of more than 50 years; her loss is its own universe. My father and mother, who will miss the kindest shadow in their lives. And us — my brothers and I, the baby. Life will distract us; it is good at doing that. We will have other people to love and be loved by.

All day, my brother and I hummed softly to ourselves, stray lyrics that let us obliquely touch the place that hurt. I started “Tu Ganga ki Mauj” but stopped after a verse. The next morning, I put on the coffee and turned on a song by Mehdi Hassan: “Muhabbat karne walay kam na honge /Teri mehfil mein lekin hum na honge.” (Your congregation will still have other lovers /It’s just that I will be there no more.)

Complete Article ↪HERE↩!

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What Is Death?

How the pandemic is changing our understanding of mortality.

By BJ Miller

This year has awakened us to the fact that we die. We’ve always known it to be true in a technical sense, but a pandemic demands that we internalize this understanding. It’s one thing to acknowledge the deaths of others, and another to accept our own. It’s not just emotionally taxing; it is difficult even to conceive. To do this means to imagine it, reckon with it and, most important, personalize it. Your life. Your death.

Covid-19’s daily death and hospitalization tallies read like ticker tape or the weather report. This week, the death toll passed 300,000 in the United States. Worldwide, it’s more than 1.6 million. The cumulative effect is shock fatigue or numbness, but instead of turning away, we need to fold death into our lives. We really have only two choices: to share life with death or to be robbed by death.

Fight, flight or freeze. This is how we animals are wired to respond to anything that threatens our existence. We haven’t evolved — morally or socially — to deal with a health care system with technological powers that verge on godly. Dying is no longer so intuitive as it once was, nor is death necessarily the great equalizer. Modern medicine can subvert nature’s course in many ways, at least for a while. But you have to have access to health care for health care to work. And eventually, whether because of this virus or something else, whether you’re young or old, rich or poor, death still comes.

What is death? I’ve thought a lot about the question, though it took me many years of practicing medicine even to realize that I needed to ask it. Like almost anyone, I figured death was a simple fact, a singular event. A noun. Obnoxious, but clearer in its borders than just about anything else. The End. In fact, no matter how many times I’ve sidled up to it, or how many words I’ve tried on, I still can’t say what it is.

If we strip away the poetry and appliqué our culture uses to try to make sense of death — all the sanctity and style we impose on the wild, holy trip of a life that begins, rises and falls apart — we are left with a husk of a body. No pulse, no brain waves, no inspiration, no explanation. Death is defined by what it lacks.

According to the Uniform Determination of Death Act of 1981 (model legislation endorsed by both the American Medical Association and the American Bar Association, meant to guide state laws on the question of death), you are dead if you have sustained “either irreversible cessation of circulatory and respiratory functions” or “irreversible cessation of all functions of the entire brain, including the brain stem” — in other words, no heartbeat and no breathing, which is obvious enough, or no brain function, which requires an electroencephalogram.

These are the words we use to describe one of the most profound events in human experience. Most states have adopted them as the legal definition of death. They may be uninspired, and they surely are incomplete. Either way, a doctor or nurse needs to pronounce you dead for it to be official. Until then, you are legally alive.

If we stay focused on the body, the most concrete thing about us, it becomes difficult to say whether death exists at all.

From the time you are born, your body is turning over. Cells are dying and growing all day, every day. The life span of your red blood cells, for example, is about 115 days. At your healthiest, living is a process of dying. A vital tension holds you together until the truce is broken.

But your death is not the end of your body. The chemical bonds that held you together at the molecular level continue to break in the minutes and months after you die. Tissues oxidize and decay, like a banana ripening. The energy that once animated the body doesn’t stop: It transforms. Decay from one angle, growth from another.

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Unfettered, the decay process continues until all that was your body becomes something else, living on in others — in the grass and trees that grow from where you might come to rest, and from the critters who eat there. Your very genes, little packets of stuff, will live indefinitely as long as they found someone new to host them. Even after interment or cremation, your atoms remain intact and scatter to become other things, just as they pre-existed you and became you.

For revelation of the mysteries of an afterlife, or of the forces that kicked off this wondrous circus in the first place, we might look to religion. What is described above is plainly observable science. Yet science doesn’t do the question justice. It won’t tell us why, or what’s behind its laws. The body houses more than we can express; you are more than your body. Becoming a blade of grass is a sweetness that doesn’t compensate for all the heartache death connotes.

Of course, we’re sad and afraid of losing ourselves and people we love, but for many of us a fear of death as the Great Unknown has been overtaken by our fears of what we know — or think we know — about dying.

Nowadays, being dead sounds like a lullaby compared with the process of dying. Given a steadily awful diet of stories about breathing machines and already-disenfranchised people dying alone, we’re told to imagine the worst, before cutting to commercial. Our choices seem to be either to picture a kind of hell — that could be mom or me, breathless and alone — or to distance ourselves from the people living those stories, not just in body but in every way, to de-identify with our fellow human beings.

But this is how we make hard things harder. Maybe our fear of death has more to do with our perceptions of reality than with reality itself, and that is good news. Even if we can’t change what we’re looking at, we can change how we look at it.

We do have fuller ways of knowing. Who doubts that imagination and intuition and love hold power and capacity beyond what language can describe? You are a person with consciousness and emotions and ties. You live on in those you’ve touched, in hearts and minds. You affect people. Just remember those who’ve died before you. There’s your immortality. There, in you, they live. Maybe this force wanes over time, but it is never nothing.

And then there’s consciousness — spirit, if you like — and of this, who can say? You may have your own answer to this question, but we do not get to fall back on empiricism. Whatever this mystery is, it blurs all the lines that seem at first glance to separate death from life. And if death isn’t so concrete, or separate, maybe it isn’t so frightening.

The pandemic is a personal and global disaster, but it is also a moment to look at the big picture of life. Earlier this week I had a patient lean into her computer’s camera and whisper to me that she appreciates what the pandemic is doing for her: She has been living through the final stages of cancer for a while, only now her friends are more able to relate to her uncertainties, and that empathy is a balm. I’ve heard many, in hushed tones, say that these times are shaking them into clarity. That clarity may show up as unmitigated sorrow or discomfort, but that is honest and real, and it is itself a powerful sign of life.

So, again, what is death? Talking about and around it may be the best we can do, and doing so out loud is finally welcome. Facts alone won’t get you there. We’re always left with the next biggest question, one that is answerable and more useful anyway: What is death to you? When do you know you’re done? What are you living for in the meantime?

For some of us, death is reached when all other loved ones have perished, or when we can no longer think straight, or go to the bathroom by ourselves, or have some kind of sex; when we can no longer read a book, or eat pizza; when our body can no longer live without the assistance of a machine; when there is absolutely nothing left to try. Maybe the most useful answer I ever came across was the brilliant professor who instructed his daughter that death was what happened when he could no longer take in a Red Sox game.

If I had to answer the question today I would say that, for me, death is when I can no longer engage with the world around me. When I can no longer take anything in and, therefore, can no longer connect. At times, social distancing has me wondering if I’m there already, but that’s just me missing touching the people I care about. There are still ways to connect with others, including the bittersweet act of missing them. And besides, I get to touch the planet all day long.

These are helpful questions to consider as you weigh serious medical treatment options, or any time you have to choose whether to mobilize your finite energy to push, or use it to let go. Our answers may be different, but they are always actionable; they are ends around which we and our inner circles and our doctors can make critical decisions.

They also have a way of illuminating character. They are an expression of self, the self who will one day do the dying and so gets to say. What is it you hold dear? Who are you, or who do you wish to be? You can see how death is better framed by what you care about than by the absence of a pulse or a brain wave.

Beyond fear and isolation, maybe this is what the pandemic holds for us: the understanding that living in the face of death can set off a cascade of realization and appreciation. Death is the force that shows you what you love and urges you to revel in that love while the clock ticks. Reveling in love is one sure way to see through and beyond yourself to the wider world, where immortality lives. A pretty brilliant system, really, showing you who you are (limited) and all that you’re a part of (vast). As a connecting force, love makes a person much more resistant to obliteration.

You might have to loosen your need to know what lies ahead. Rather than spend so much energy keeping pain at bay, you might want to suspend your judgment and let your body do what a body does. If the past, present and future come together, as we sense they must, then death is a process of becoming.

So, once more, what is death? If you’re reading this, you still have time to respond. Since there’s no known right answer, you can’t get it wrong. You can even make your life the answer to the question.

BJ Miller is a hospice and palliative medicine physician, author of “A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death,” and founder of Mettle Heath, which provides consultations for patients and caregivers navigating serious illness.

Complete Article ↪HERE↩!

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Together Alone at the Zoom Funeral

By Kolin Pope and Ted Muldoon

Last February, Nancy Chouinard took her father out to dinner. Two months later the world had changed, and her dad, Norman Ginstling, passed away alone in a hospital.

The funeral was held over Zoom. There was nobody at the grave. “I feel like the grief process has completely been delayed,” Nancy said. “When it ended, you just shut your computer. And that was it. You’re back in your life.”

Watch the animated story below:

Norman was born on July 4, 1935, and grew up in New York. He was a private pilot, an accountant and a jazz lover, and kept very involved in the lives of his children and grandchildren. Since his death, over 285,000 more Americans have died of covid-19.

I think that when things go back to normal, I’ll miss him more.

Nancy spoke with us in early October from her home in Maryland, in a conversation for this animated story.

Complete Article ↪HERE↩!

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This empathic website helps you think and talk about death

Death is all around us this year. We need tools to help.

By Mark Wilson

It’s been a year of loss. But even seeing the devastation of COVID-19 hasn’t made it any easier to talk about death—and specifically, the possibility of our own deaths and deaths of those we love. Of course, ignoring death doesn’t make its inevitability any less real, during this year or any other.

Life Support is a new website from the London creative studio The Liminal Space, funded by the U.K. government. It’s a resource that proclaims, “Talking about dying won’t make it happen.” And with that premise as a baseline, it lets you explore topics about death and dying from the perspectives of experts, like palliative care doctors and social workers.

The design appears nebulous at first glance, with words floating in hand-drawn bubbles, which pulsate like the rhythm of your own breathing. But looks can be deceiving. What’s really lurking inside this casual space is a sharp curriculum built to answer your lingering questions about death.

As you scroll through the interface, the site offers several potential paths of thought that are probably familiar to most of us, like, “I’m scared to have a painful death” and “I don’t know if I should talk to my child about death.” When you find a question to explore, you swipe for more. That’s when experts come in. Some of their answers appear in blocks of text. Others are actually recorded, with audio you can play back. You might think the audio is a gimmick or unnecessary panache. In fact, I found it quite affecting to hear a doctor offering her own thoughts and advice about death aloud; it creates a level of intimacy that printed words can’t quite capture.

Ten or 20 years ago, a resource like this might have been a pamphlet (and indeed, anyone who frequents hospitals knows that pamphlets are still a mainstay to educate patients on topics of all types). But Life Support makes a convincing argument for how giving someone a bit of agency—like choosing our own questions to be answered, or hearing from doctors with our own ears when we’d like to—makes the information easier to digest.

I doubt there’s any quick resource out there that will ever get people completely comfortable talking or thinking about their own mortality. Religion and the arts have already attempted to tackle this topic for millennia. But Life Support is a solid attempt to ease us into the conversation.

Complete Article ↪HERE↩!

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Death by Appointment

What the reviewers said: ‘I found this book highly thought provoking, and would recommend it for all nurses, not just those working in palliative care’

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‘Death by Appointment’ – a stark title for a book – but far from a work of fiction. The book, written by two experts in the field, informs the reader about the complexities of the ‘assisted dying’ debate, from a wide aspect – spanning from legal to medical, and a whole range in between.

This book does not pull any punches. Issues of ethics, morals, the psychosocial, the burden on both professionals and patients, and safety are dealt with head on and are highly thought provoking.

The facts are conveyed in a clear manner, inviting you to make your own measured conclusions. This would benefit an audience way beyond only health professionals.

What were the highlights?

As a starting point and to help dispel myths, it is very helpful to have clear explanations of the terminology of the law in the UK currently, and the definitions of physician-assisted suicide and physician-assisted euthanasia.

The referenced evidence from the global picture where laws in ‘assisted dying’ have changed, and the impact that will make on our decision making, result in powerful reading.

The clear, systematic description of the countries examined, the potential burden on doctors for decision making, and the dilemmas for caring professionals and for families informs the reader of the complexities of the topic. Reference to the role of nurse practitioners in decision making in Quebec sharply brings relevance to nurse readers.

The descriptive elements of the value of expert clinical palliative care were reassuring. The reminder of the recent valuable contribution of palliative care to those patients suffering with the effects of Covid-19 made this book highly topical and as well as relevant.

It was surprising – and concerning – to learn how changes in the current legislation may impact not only the terminally ill, but also those with chronic illness.

Strengths and Weaknesses?

A major strength of this book is the ongoing theme of the recognition of respect for the reader’s views.

With two authors of different but extensive experience in the ‘assisted dying’ debate, there is a good balance with alternatively written chapters, which successfully engages the reader to carry on reading. This also enables a widely based audience to learn, influence practice and make informed choices.

For example, there are references to previous evidence-based reports which ably and systematically outline the impact of the changes where the law relating to ‘assisted dying’, under certain jurisdiction, is permitted. Ripe with statistics, this can at times be overwhelming; nonetheless, revealing and surprising.

This is well balanced by the qualitative narrative which successfully probes beneath the surface, relating it to professional ‘hands on’ care in the UK.

Descriptions are given as to how co-ordinated interdisciplinary team work in palliative care can help to alleviate fear in the management of end of life. This makes for reassuring reading by someone who may not be aware of provisions that are already in place.

There can be no doubt that the marrying up of the authors’ chapters works well to convey a strong message of caution in any change in the current law. Their jointly written chapters summarise succinctly the complexities of the topic.

The impact of changes in the law elsewhere in the world and the potential additional burden on the patient in their decision making cannot be ignored.

The length of the book makes it imminently readable. The chapter headings make it a useful reference guide.

Who should read it?

This guide is a compelling read for a wide audience. The public, politicians and policy makers would benefit. It is certainly not confined to medical, nursing, social and health care professionals.

It is a welcome contribution to the debate. On a topic that ultimately is one of safeguarding for us all in the future, it cannot fail to be thought provoking.

Complete Article ↪HERE↩!