Month: June 2022

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Do Mexicans accept death better than other cultures?

Day of the Dead diffuses the grieving process for loved ones, but it’s still a difficult loss

Funeral procession with taxi in Tenango del Valle, México state. More common in towns and rural areas, processions are rare in Mexico City.

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Oddly, we’d had a casual conversation about Licha’s condition a few weeks ago, when my husband Alejandro assured me that things were OK with his sister-in-law’s cancer treatment.

Then, a few days ago, I hear him talking on the phone with that tone of voice that transcends all linguistic barriers. You know the one — half hushed and 150% serious.

Licha’s death on June 19 was my second experience with a death in Alejandro’s family; the first was 12 years ago. My experiences with these events contrast somewhat with a lot of what is written in English about death in Mexico. The idea that death is dealt with differently here, more easily and readily, might be a little simplistic.

Such writings focus on Day of the Dead and its festive skeletons. It is true that Mexicans have their own way of relating to the general concept of death, but it is not a devil-may-care attitude, especially when it hits home.

As a United States-raised Protestant, both deaths I experienced caught me a bit by surprise because there had been no frank talk beforehand about the serious medical issues both women had.

Funeral at a church in San Francisco Tlaltenco, in Mexico City. The requirement to dress up or wear black seems to vary by region and social status.

In the case of Alejandro’s sister, Lupita, this was kind of understandable as she was only 45 years old. I do not know to this day how much Alex knew of her condition before she went into the hospital for the last time; I think Lupe herself kept most of it secret from the rest of the family.

Licha was in her early 70s — still too young though not quite so tragic — but a similar scenario played out. Everything was OK, or not so bad, until it wasn’t.

Like everywhere else, once death comes in Mexico, ritual and tradition take over. They seem to vary greatly in the details depending on a family’s socioeconomic status.

To get it out of the way, I’ll say that my husband, Alejandro, comes from a lower-working-class urban family — Catholic, but not overwhelmingly so. My husband believes in God but not so much in the church.

In Alex’s family, death is immediately followed by a flurry of phone calls among distant family members discussing decisions whether or not to travel. Mexican families don’t tend to scatter like U.S. ones do, and the need to travel long distances is still rare enough the families might not take this into consideration when making funeral arrangements.

Alex’s family is somewhat scattered in central Mexico, so the decision was made for him to travel to Guadalajara while I would stay in Mexico City.

Like many other cultures, Mexican funeral rites have a wake, or viewing period (although this can be optional), and some kind of ceremony related to the disposal of the body. The details of how these are done vary by local and family traditions along with the economic situation of the family.

There is also a novena, or period of prayer, unless the family is not Catholic.

The wake can last anywhere from 24 to 72 hours, depending on whether the body is embalmed. If not, the body must be buried or cremated within 24 hours.

Aside from this, regulations are not as strict or as pervasive as in other countries, and there is some flexibility in how and where a body is set for viewing. Family members can participate in the preparation of the body, such as applying makeup to the face, with viewings happening in funeral parlors or in people’s homes.

The body is laid out in a coffin and usually separated from viewers by a pane of glass or translucent shroud, though an open casket allowing mourners to touch the body is not unheard of.

Someone is usually with the body day and night at this time, often with one or more people praying. But there is often food and conversation going on as well, especially in the areas farther away from the deceased.

Final rites can be held in the same funeral parlor as the wake or at a church, with the latter being more common in more rural areas — as are processions. In the almost 15 years I have lived in Mexico City, I have never seen any sort of funeral procession, but I have seen them (motorized and on foot) in towns.

In the case of my husband’s sister, the final service was in the funeral home, with only immediate family accompanying the body to the crematorium. Burial is far more traditional, but the lack of space in places like Mexico City has made cremation more acceptable. Burial or the depositing of ashes is often done with a small ceremony.

If you are not from a Mexican Catholic family, the biggest difference for you will be the novena — a nine-day period after the burial when family and close friends gather at least once a day — often after work — to recite the rosary and other prayers for the deceased.

This is done in the deceased’s home or that of a close family member. It often means a crowded house, full of people eating tamales and drinking atole once the somber task of praying for the soul is completed.

Dress codes for public funeral rites vary quite a bit, and it seems mostly to have to do with socioeconomic status. People may wear anything from the most formal attire, preferably in black, or the clothes they wear every day. In my husband’s family, somewhat more formal attire in a darker color suffices.

Although the rites observed in the hours and days after a loved one dies are very important, they don’t seem to take on the sense of urgency that they have in my family. Probably because of Day of the Dead (when many funeral rites are repeated), it is not necessary to show all of your grief immediately.

So, yes, funerals in Mexico are about saying goodbye, but that goodbye is not as absolute as they are in Anglo-Protestant cultures. On Day of the Dead, you have a chance each year to relate to those who have gone before, a psychologically healthy way to deal with lingering grief.

Complete Article ↪HERE↩!

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Dying Differently

— Can Old Ways to Die Help Us Find New Ways to Live?

Changing grief rituals for a post-Covid world

By Brandy L Schillace

A procession makes its way along a high ridge in the mountains. Dressed in bright colors, a group of Buddhist mourners beat hand-held drums by turning them side to side in rhythm. The steady plok-plok is accompanied by the ringing of bells and the singing of chants that echo in the thin air of high altitude.

Above them, as if in expectation, soar a host of griffin-vultures. This slow-marching party and its feathered heralds head for a sacred cliff at the roof of the world; for this is Tibet, and this is a sky burial.

For most Westerners, the idea of leaving remains for hungry birds is unnerving. In the U.S., death tends to be clinical, tidy, followed by a viewing and funeral service at a place specially made for the purpose. Friends and relatives fly in, gathering together for grief, for remembrance, and often for a meal.

But the Covid-19 pandemic changed this. The pandemic and its virulence meant no gathering, no sharing. It meant attempting to process a funeral from afar, over Zoom. It meant being unable to perform those last basic rituals we’ve come to associate with saying goodbye.

What do these changes mean for us now and ongoing? I’ve been asked about this a lot in the past year — interviewed for Jodi Kantor’s piece on changing funerals for the New York Times, and speaking to NPR’s Tonya Mosley on Here and Now about how we can cope.

I think there is much to learn, in particular, from funeral traditions from other parts of the world. Funeral rites have been a part of human communities for a very long time —sky burial for around 11,000 years — but as a social practice, they can change as situations change. Looking at death and grief across cultures can provide a roadmap for coping with our strange new realities post-pandemic.

Sky Burial

I first encountered “sky burial” while writing Death’s Summer Coat. In Tibet, Buddhists have a tradition of ritually dissecting the dead into small pieces and giving the remains to waiting vultures and other carrion birds. The practice agrees with fundamental Tibetan Buddhists beliefs: the cycle of birth, death, and rebirth, and living in harmony with nature.

The mourners began this particular day by washing and preparing the body, then wrapping it in colorful cloth. They sing and chant up to the ledges, where a special technician will dissect it for the waiting vultures. The body will, by these means, be broken down for easier consumption by the birds, whose lives will be enriched by the man’s flesh and blood. Scarcely anything will be left, and nothing wasted.

Dho-Tarap, Tibet is one of the most remote inhabited villages on earth at 12,000 feet. So this burial is also practical. Not all Buddhists practice sky burial. But you can understand why it is popular in the cold, tree-less mountains (with its frozen ground). You cannot burn a body with no fuel. You cannot bury it in hardened earth. At some point in their long history, the Tibetan Buddhists chose this method as the best means of disposing of the dead. Social traditions can be altered to meet the needs of the time, the place, and the circumstances of the people they serve.

The Dead at Home

During the Covid-19 lockdown, many of our traditions were interrupted. Weddings didn’t happen. Travel ceased. Lives were cocooned, as though wrapped in wool and put away for winter. But amid the seeming halt of everything else, death moved relentlessly forward. We lost loved ones, but often were unable to mourn them the way we wanted to. A wedding might be postponed; what if we could postpone a funeral?

One of the most unusual traditions I encountered during my research (apart, that is, from necrophagy), belongs to the Torajan people of South Sulawesi, Indonesia. They bury their dead in a variety of ways, sometimes hanging coffins from cliff-sides or interring remains inside of growing trees, or — occasionally — keeping them in the home, mummified.

Life among the Torajans actually revolves around death, and wealth is amassed throughout life in order to ensure a properly auspicious send-off at death. Raising money can be a lengthy process, and so a family embalms and stores the body in the home until the funeral can be properly paid for. Until the ceremonies are complete, a Torajan is not considered truly “dead,” even if the process takes years.

When the Torajan people lose a family member, perhaps a matriarch, there is grief; there is loss. But in order to mourn her properly (and celebrate her life and legacy), they must delay the funeral. The family will tell others that she is “sick,” and even symbolically feed and nourish her by setting a place at the table.

But when they at last have sufficient funds, an enormous celebration ensues — akin to the kind of work and cost that goes into some Western weddings. They also practice Ma’Nene, a ritual in which dead (now mostly mummified) relatives are disinterred, cleaned, and dressed in new fabric to be celebrated a second time.

Such practices may seem alien to Westerners, but I suggest that they offer reassurance and hope as well. If something has intervened to make the funeral of a loved one impossible in the moment, there is no reason it cannot be delayed to a later time — and no reason why it can’t be celebrated more than once. We may not have the remains among us, unless the person was cremated, but we still have the tangible memory of them that lives in each of us. Perhaps there may be new paths for our grief in the post-pandemic period.

Mementos to Grief

Some may be familiar with the concept of memento mori popular during the Victorian period as mourning jewelry made from the hair of a loved one. But a momento can be many things; a letter, a photo, an article of clothing, an heirloom. I remember walking through my grandmother’s house after her passing, feeling her presence as I touched even the most mundane objects: her favorite jelly spoon, her cast iron skillet. These pieces stand in for the body, and evoke memory through sight, smell, and touch. They can be important parts of grief ritual, too.

During dictator Pol Pot’s Khmer Rouge reign in Cambodia (1975–1979) more than a million people perished from bloodshed and refugee conditions. Family members disappeared without a trace, children never returned home, and no one knew where the bodies were buried. This was particularly hard upon the Cambodian people, whose beliefs required that certain burial and post-burial rituals must be performed over the body. Otherwise, they feared the soul would wander and be lost, unable to reach the next spiritual level. How could this be possible among the burial pits of executed, unnamed victims? At a time of greatest tragedy, they had been denied their death rituals.

So, culture adapted. The Cambodian people created a new ritual, called chaa bangsegoul, explicitly to deal with genocide. Instead of chanting, in the moment of death, over the deceased loved one, the living may choose a photograph or something owned by the dead as a momento stand-in. With this connection to the departed, ritual chants are performed to help the wandering soul on its way, even years after the event. The Cambodian culture changed to make room for grief and death in a new way, incorporating a new ritual to heal over devastating losses.

Many during the Covid-19 pandemic also suffered devastating losses. Whole families have been plunged into grief, and some of us are mourning for those funerals we could never attend. Perhaps we can look at these at-first unfamiliar practices and think about how our own rituals can change to meet new circumstances.

What rituals might we evolve even now to find closure after the losses of the past year — and how might we re-celebrate life, and re-approach death, in the months and years to come?

Complete Article ↪HERE↩!

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How Do You Celebrate a Pregnancy While Grieving?

By Olivia Jordan Cornelius

I’ve been to two ultrasounds in my life. The first was with my husband, Cam, to get a clearer picture of the cancer that was killing him. He lay calm as his belly was gelled and rubbed like a pregnant woman. The sonographer, who sees the spark of so many futures, documented his end. The second was for my baby. A tiny, beating, mango-sized human I’d kept nestled away for five months, just for us.

Cam died shortly after his 34th birthday in 2019. At the beginning of the year we’d moved to New Zealand for his dream job at a film studio. He worked for two months before he got sick and was diagnosed with gallbladder cancer, the type that there was never a chance to beat. Chemotherapy would buy him a few extra months, but obliterate his fertility in one session, so we were referred to a family clinic where they’d freeze a little vial of hope. This isn’t his baby, they’d be a toddler by now. I can imagine exactly what they’d be like, too—long chestnut hair and inky blue eyes, good at drawing, just like their dad.

I’m having this baby with my fiancé. We met when Cam was sick (through their mutual love of wrestling) and the three of us became inseparable friends. He adored Cam and when he became sicker he helped care for him. He was there in our darkest days and held me through the other side. He showed qualities that would one day make him a wonderful parent, I just didn’t know it would be with me. Several months after Cam died, we went on a road trip to South Island as I’d always wanted to see the whales down there. Bonded by grief and an awakening to the fragility of life, we nestled together on that trip, unplanned but feeling so right.

A year later, our baby wasn’t mapped out either—not unplanned, but unexpected. I’d been blasé about birth control before and thought it could take years to get pregnant—if at all. A few months before I knew, I went to see a medium who said at the end of the reading, “The baby is the apple of Cam’s eye,” but whose baby I wasn’t sure. I can’t pinpoint what made me take the first pregnancy test beyond a bit of dizziness, but it came back a blank foggy window with neither a yes nor a no. When two more tests were positive, I went to my doctor to get it triply confirmed.

When awful things have happened to you, you don’t expect amazing ones to come so easily. When so many women struggle to get pregnant, why shouldn’t I? It has to be someone. I’d fought like crazy to save Cam’s life—second opinions, drug trials, overseas treatments—I’d asked for it all and it added up to nothing. Now a new life was being sent my way just like that. I didn’t have to fight for anything. The first few weeks I became obsessed with an online miscarriage calculator, nervous every time I’d go to the bathroom that the baby would have come out. I reasoned that if I was prepped to lose, didn’t become too attached, then it would be easier to bear. I can understand if women who have lost a previous pregnancy apply the same cautious logic.

Five months later and the odds are in my baby’s favor that they’ll continue to morph, grow, and enter this world in another four months’ time. I’m still secretive about it though, there’s not a hint of my bump on social media or much in the real world. I’ve been to one parenting class and haven’t bought a single baby thing. I don’t glow, I hide in smocks. The people I’ve told I’ve done so sheepishly because I’m not sure I can announce it with all the glee I’ve seen in movies and on Instagram. After all, pregnancy and grief are marketed as opposing forces, life versus death / happy versus sad. I worry people will think, or want, my grief to be wrapped up in this happy ending. It’s not as simple as that, one life doesn’t replace the other. I’m incredibly happy to have this baby, but still sad—sad that they won’t know Cam, sad that he doesn’t get this chance.

If you search “pregnancy grief” you’ll find a list of articles on how grief can negatively affect a baby. You can choose not to smoke or drink, but you can’t choose not to grieve. Part of me will always be grieving—that doesn’t mean I can’t move forwards or be a good mother. I’m fortunate to have a partner with a big enough heart and a smart enough brain to know I can love us and our future family, but still mourn what I had. Besides, some women lose a partner, a parent or a child while they’re already pregnant; it’s life. We’re not completely powerless in our grief though and it’s about looking for the things that we can control. For me, a midwife who’s planning around my fear of hospital helps, as does telling my growing baby all about Cam. I’ll choose which pregnancy activities feel right for me, who I want to tell, how and when, knowing that my pregnancy journey is valid even if it doesn’t look the way people may expect.

I’ve got my second ultrasound this week and I’m so excited to see how the little life inside me is getting on. We still don’t know if we’ll find out the gender. I like that Cam is a name that works either way. And when they arrive, I’ll take all the lessons I’ve learnt through grief into parenthood and show my child this: life is short and precious, you are wanted and you are loved.

Complete Article ↪HERE↩!

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What if hospice services weren’t just for the dying?

By Michael Ollove

Gloria Foster wasn’t ready for hospice, even though, with a prognosis of less than six months to live, she qualified for it. She was debilitated by diabetes and congestive heart failure, and was living with both a pacemaker and a device to help pump blood from her heart to the rest of her body. She also was tethered to an oxygen tank.

But Foster didn’t want to enter hospice, if, as is normally required by Medicare, she would have had to forgo treatments that might, against all odds, reverse the course of her disease.

“Why did I need hospice?” Foster, 73, asked in a phone interview recently from the home she shares with a grandson in Asbury Park, New Jersey. “Hospice is more or less when you’re ready to die. I just wanted to work my way back to doing as much as I could.”

But under a Medicare pilot program that began in 2016, Foster was able, for a time, to receive home care generally available only to hospice patients. Unlike hospice rules that normally govern Medicare, the public health plan for seniors, she wasn’t required to give up treatments for her terminal health conditions.

Still alive long beyond her prognosis, Foster credits the program, which ended for her in December 2019, with stopping her frequent hospitalizations, improving her mobility and greatly boosting her spirits.

“When it came to an end, I was very upset,” she said of the at-home services. “I cried, as a matter of fact.” She said she’s been hospitalized six times since then.

An independent evaluation of the five-year pilot — the Medicare Care Choices Model — recently provided its most robust data so far: The results found that participants were able to stay out of the hospital and live longer at home than a comparison group while also saving Medicare money.

The results were so encouraging that many who work in palliative and hospice care think the study’s conclusions will lead to some of the most important policy changes ever undertaken in the field — and not just for those in Medicare but also for patients with Medicaid, the state-federal health plan for low-income Americans, and for patients with private insurance as well.

Many who work in the field of hospice or palliative care hope the pilot project’s results will be the catalyst for bureaucratic changes that could deliver a raft of traditional hospice and palliative care services to millions more Americans struggling with debilitating chronic disease, whether imminently terminal or not.

The changes they would like to see include permanent removal of the requirement that patients give up curative treatments to access hospice-style benefits. Many also hope Medicare, Medicaid and private insurers will reexamine the requirement that home-based comprehensive palliative care services be provided only to those with a prognosis of six months or less to live. That denies many with serious chronic health conditions services they say would be beneficial and might also cost less, in part by keeping patients out of hospitals.

“This is a huge deal,” said Edo Banach, president of the National Hospital and Palliative Care Organization, which represents hospice and palliative care providers, and was among those who lobbied the U.S. Centers on Medicare and Medicaid Services, known as CMS, to undertake the pilot.

Hospice has evolved

When Congress created a Medicare hospice benefit in 1982, lawmakers and advocates mainly were focused on cancer. At that time, when treatments for cancer patients proved ineffective, the trajectory toward death often seemed clear. Hospice care was seen as an alternative to heroic but also, for patients, often agonizing measures to keep people alive at all costs.

Hospice switched the health care emphasis to symptom relief while enabling dying patients to use their remaining time in as fulfilling a way as possible by, for instance, spending time with family or simply sitting outside on a pleasant day.

But since 1982, cancer treatments have dramatically improved, extending lives, while higher percentages of Americans are dying of diseases other than cancer, particularly of illnesses related to dementia and respiratory illnesses such as chronic obstructive pulmonary disease, known as COPD.

And, as with many cancers today, the timetables of those diseases are less predictable.

“Six months for a patient with COPD isn’t realistic, because the trajectory of the disease isn’t the same as cancer,” said Susan Lloyd, CEO of Delaware Hospice, which participated in the pilot. “Even cancer is more chronic because of better treatments available. There needs to be a change in viewing the time frame to meet where patients actually are today.”

Many advocates and providers think other patients with serious but not necessarily terminal conditions also would benefit from a full array of palliative care services delivered in the home. The goals of both palliative and hospice care are to relieve symptoms and align medical care with the patient’s wishes and values. The main difference is the terminal prognosis in hospice.

CMS said it plans to issue a final report on the pilot early next year that will include data from the most recent report as well as qualitative results from interviews with participants, their families and providers.

Advocates hope that the latest data ultimately will result in changes that would enable many more Americans to receive full palliative care services at home, including those unwilling to give up on their disease treatments.

The pilot “opened up an avenue for so many more people to enter the program without having to admit, ‘My God, this is the end of my life,’” said Dr. Marianne Holler, chief medical officer at the VNA Health Group, which participated in the Medicare pilot and provides hospice services in Ohio and New Jersey. Foster was one of the group’s patients.

“Patients should not have to pick Column A or Column B at the end of their lives,” Holler said.

Holler and other providers said the pilot’s results demonstrate the cost-effectiveness of hospice care and argue for rules changes on eligibility and reimbursement.

Fewer hospitalizations

The pilot followed 4,574 participants from January 2016 through September 2020. They were entitled to services identical to — with some exceptions — those typically available with the Medicare hospice benefit. The project sought to answer whether participation would improve patients’ quality of life, increase election of the full hospice benefit and lower overall Medicare expenditures.

Among the findings:

— Compared with a control group not enrolled in the pilot, participants required less intensive medical interventions. For example, they had 26% fewer inpatient hospital admissions and 14% fewer outpatient emergency department visits and observation stays. They also spent 38% fewer days in an inpatient intensive care unit and 30% fewer days in other inpatient hospital units.

— A large majority of participants — 83% — made the transition to the traditional Medicare hospice benefit. Participants were nearly 30% more likely than nonparticipants to elect the Medicare hospice benefit before death.

— Participants were less likely to receive aggressive life-prolonging treatments in the last 30 days of life than their counterparts. They also were able to spend about six more days at home than those in the comparison group.

— As a result of all the findings above, Medicare expenditures for participants were 17% lower than for nonparticipants. The savings were even greater for those who lived less than six months after entering the pilot.

“When you give people more choice and greater freedom to make choices in their best interests, they make decisions that are better for them in terms of quality of care but better for the country in terms of costs,” Banach said. “The demo worked.”

The pilot waived a key requirement of Medicare’s hospice benefit: Patients weren’t forced to forgo treatments of their terminal conditions, such as chemotherapy, immunotherapy and radiation, intended to promote recovery or even a cure.

The pilot was open only to those with one of four diagnoses: cancer, chronic obstructive pulmonary disease, congestive heart failure or HIV/AIDS. To be eligible, people still needed to have received a prognosis of six months or less.

Once deemed eligible, patients could receive traditional hospice services in their homes, delivered by a multidisciplinary team of doctors, nurses, counselors, social workers and chaplains.

The services they received were similar to those provided under the Medicare hospice benefit: case management and care coordination, around-the-clock access to their hospice team, counseling services and symptom management.

The pilot did not cover some services that are part of the traditional Medicare hospice benefit, such as in-patient respite care, a care aide in the home and coverage for durable medical equipment, such as hospital beds.

Before she joined the pilot in 2017, Shirley Klionsky, 91, of Marlboro, New Jersey, recalled, “It was hard. Something was always going wrong, and I was always going to the hospital.”

That ended during the pilot, thanks to the hospice team’s weekly visits and monitoring of her advanced lung and heart disease. “It was the best thing I could have done,” she said.

Klionsky wouldn’t have entered the program if it had meant giving up the treatments for her disease. Hospice wasn’t for her.

“That would have meant dying,” she insisted, “and I said no to that.”

Complete Article ↪HERE↩!

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‘Night is now falling’

— This is what dying looks like

The author and her late husband, Raja, in London circa 2002.

By Grace Segran

Some people have it easy. Like my husband, Raja. We always said we wanted a swift death: a heart attack while when we were young, before the decay and disease set in. That was how he died 11 years ago, at 55, after open heart surgery to change his faulty bicuspid aortic valve. He was waiting to be discharged when he collapsed and died. Lucky guy.

My death, however, is going to be a drawn-out affair.

Fourteen months ago, the breast cancer came back after 23 years, with metastasis (mets) to my hip bone and aortic lymph node. For almost a year, my life was crushed by the side effects of the targeted hormonal therapy — drugs directed at proteins on breast cancer cells to stop their growth. They were too toxic for me, spiking enzymes and tanking blood counts to dangerous levels. I had severe anemia, extreme fatigue and was unable to eat or drink.

As the toxicity in my body increased, I took to my bed. For the first three months of this year, that’s where you’d find me: nauseous, exhausted and lifeless. I only got up to use the bathroom or to have a piece of buttered toast that tasted like sawdust. I love to eat and grieved my inability to do so. My weight dropped several pounds every time I stepped on the scale in the doctor’s office; my clothes hung loosely. I could only manage sips of fluid and became severely dehydrated, exacerbating the vicious cycle of fatigue.

Routine activities that I had taken for granted, like dressing and undressing, taking a shower, putting on my shoes, became punishing activities — and took forever to get right – because my muscles had become deconditioned and lost their strength. I had to carry one leg at a time into the car or onto the bed. The decline was so swift my mind and body couldn’t keep up.

The decline was so swift my mind and body couldn’t keep up.

When the body is not well, the mind and spirit aren’t either. They all go into a state of minimal activity and depression. Even my favorite playlist of Yo-Yo Ma playing Ennio Morricone didn’t stir my spirit. Over time, I stopped listening to music, reading, watching movies, attending Zoom bible class and Sunday services, reaching out to people, writing, and dreaming of travel destinations. I had lost purpose and interest in life.

I was alive clinically, but I was not living.

In March, when I was at the hospital for an urgent intravenous hydration, the nurse practitioner came by (the doctor had a full schedule). She asked me: “Would you consider transitioning to hospice care?”

I was stumped. Where was this coming from? I’d expect that sort of question from my doctor during a consultation, but not when I was being hydrated in the infusion room.

“The treatment isn’t working,” she continued. “Your body is responding violently to the drugs, and the symptoms are likely due to disease progression as well. Moreover, there’s not a whole lot of treatment options for your particular situation.”

I felt blindsided. By definition, hospice care is for people with a life expectancy of six months or less, if the illness runs its normal course. But my medical team hadn’t spoken to me about reaching the end-of-life stage any time soon. I had been soldiering on, until the drugs I’d been taking stopped working, and we moved on to the next line of drugs. Or when my doctor thought it was time to stop treatment. I guess this is that time — and she’s telling me now.

Stopping treatment and moving to hospice care wasn’t a difficult decision to embrace. I made it on the spot. “I’m sick of being sick all the time. So yes, take me off all the cancer meds and I agree to have my medical team take care of me at home,” I told the nurse practitioner. “God-willing, the toxicity of the drugs will wear off and I can get back to the business of living. For a limited time at least. Until the cancer takes over.”

That day, after the nurse practitioner gave me her honest assessment, I found my way home in a daze. Confused at the suddenness of the change in treatment and the reality of my situation.

My body is shutting down and I’m slipping away. This is what dying looks like.

It slowly dawned on me that the physical symptoms I’d been experiencing were manifestations of metabolic decline. My body is shutting down and I’m slipping away. This is what dying looks like.

There is some sense of relief that the suffering will soon be over, and comfort that I’ll be home with the Lord. But there’s also a real sense of wistfulness of leaving my people and doing the things that I love.

Raja was always a big fan of J.R.R. Tolkien’s work,reading it often since he was a teen. My daughter, Elizabeth, and I became great fans when the movies came out. The closing song of “The Hobbit” resonated with my journey:

Night is now falling/So ends this day/The road is now calling/And I must away/Over hill and under tree/Through lands where never light has shone/I turn at last to paths that lead home

My cancer, without treatment, is now in free fall. I cannot tell where hospice will take me. No one’s ever explained what it’s like to die. But this I can say: Raja ol’ chap, I’m not too far behind. Keep the light on for me.

Complete Article ↪HERE↩!

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Does grief depend on how the loved one died?

by University of Montreal

Is the grief experience different for individuals who have lost a loved one by medical assistance in dying (MAiD) compared to natural death with palliative care (NDPC)?

Philippe Laperle examines this sensitive issue in a recent article published in the Journal of Death and Dying, based on his Ph.D. research under the supervision of Marie Achille of the University of Montreal’s Department of Psychology and Deborah Ummel of the Université de Sherbrooke’s Department of Psychoeducation.

Previous research suggests that following the medically assisted of a loved is no more challenging or complex than grief in other dying contexts, including sudden natural death or suicide. Some studies have even concluded that it may be easier.

Comparing two groups of bereaved individuals

To date, however, no one has compared bereavement following the loss of a loved one by MAiD and by NDPC, considered the “gold standard” in in end-of-life care and death preparation.

Laperle recruited 60 subjects who had been bereaved for at least six months. Twenty-five of them had lost a loved one by MAiD and 35 by NDPC. In the majority of cases (48), the cause of death was cancer.

The 51 women and 9 men first completed two questionnaires assessing different aspects of grief, symptoms of distress and the presence of prolonged grief disorder requiring professional psychological support. This quantitative component was followed by in-depth interviews with 8 members of each group.

No overall differences, but a diversity of experiences

Contrary to his initial hypothesis that grief would be easier after MAiD than after natural death, Laperle did not observe any significant differences in intensity or distress between the two groups.

The low scores for distress symptoms indicate that “these two contexts tend to make grief easier in certain respects,” said Laperle, “although some bereaved individuals still reported a more difficult grief experience characterized by depression and guilt.”

The interviews showed that the experiences of the bereaved were diverse and, sometimes, mixed in both groups. And that the traces, or “imprints,” left on the bereaved individual by their loved one’s final moments and the separation brought by death could be painful, comforting or both at the same time.

“When preparation for death and acceptance of its coming unfold at a similar pace in the dying person and their loved one, the two arrive at the same point mentally and emotionally at the time of death, which makes the subsequent grieving process easier,” explained Laperle. “But if one of them accepts the impending death while the other remains in denial, this leaves imprints that are more difficult to overcome.”

But regardless of whether the loved one passed away by MAiD or naturally under palliative sedation, in which case the person gradually slips into unconsciousness and death, some bereaved individuals felt the process was rushed. In general, those who were in synchrony with their loved one experienced the death more serenely and felt it came at the right time.

Differences were also found n the subjects’ memories of the loved one. In the case of MAiD, some of the bereaved remembered the departed as a “hero” who embodied values of freedom, control, courage and/or immortality. In the case of NDPC, the departed was more likely to be remembered as the embodiment of a beauty that never fades completely although it withers. Others felt left behind by their hero, which created a even greater void after their passing.

“It’s important to remember that every grieving process is different and that not everyone will be left with the same imprints,” said Laperle. “In general, imprints fluctuate over time, arising momentarily to then dissipate and even transform. Other factors also impact grief, including the person’s relationship with the deceased and degree of involvement during the illness. These factors can increase or decrease the effects of the imprints left by MAiD or NDPC.”

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How to Support a Colleague Who Just Lost a Baby

The loss of a baby is an undeniably singular and terrible loss. And for those who haven’t experienced this type of loss, it can be difficult to know what to say or do or how to help. But social support is one of the ways that humans get through grief, and how you respond to your colleague affects their experience of returning to work and overall well-being. Distilled from the experiences of grieving parents, the author offers ways to best support team members who face this devastating loss. While there is nothing you can do to take away your employee’s pain, you can make their return to work more tolerable. By offering flexibility, compassion, and patience, and following their cues, you can help your colleagues feel both validated and supported.

by Dina Smith

Tragic. Heartbreaking. Unbelievable. Whatever words we may choose, they fall pitifully short of the devastating reality of losing a baby.

Sadly, this unthinkable heartache occurs more than we may care to know. In the United States alone, approximately 45,000 people lose their babies to stillbirth or infant death each year. Tens of thousands more lose wanted pregnancies to spontaneous miscarriage. Still others are faced with the gut-wrenching decision to terminate their pregnancy for medical reasons.

The loss of a baby is an undeniably singular and terrible loss. For pregnant employees, there is a physical experience that comes along with the emotional challenge. Even with losses before the 20th week of pregnancy, it can take weeks to months for the body to recover and return to normal.

Further, many people can’t understand or might not acknowledge baby loss as a real loss. It is a disenfranchised grief, a term coined by bereavement expert Kenneth Doka to capture the experience that comes from losses that are not openly acknowledged, socially mourned, or publicly supported. Worldwide, grieving parents often feel that they can’t talk about their loss and even unentitled to feel the way they do. It is a hidden, lonesome sorrow.

But as I know from losing our daughter, Anya, when she was only three days old, losing your baby can bring you to your knees. It is a trauma and full grief. Life after Anya died was heartrending, disorienting, and very lonely.

Amid the grief and the physical and emotional challenges that accompany this unimaginable loss, the return to work can feel daunting and nearly impossible. And for those who haven’t experienced this type of loss, it can be difficult to know what to say or do or how to help.

But social support is one of the ways that humans get through grief, and how you respond to your colleague affects their experience of returning to work and overall well-being. Distilled from the experiences of the many parents I’ve met as a member of the club no one wants to join, here are ways you can best support team members who face this devastating loss.

Express your condolences simply.

When someone experiences a loss, it’s human nature to want to alleviate their pain. This can lead us to reach for platitudes such as “Time heals all wounds,” or “You’ll have more kids,” or “I know how you feel.” While well intended, these statements are unhelpful. They minimize the person’s loss and can make them feel even more isolated.

Instead, express a simple message of condolence and don’t press for details. For example, you might say “I am so sorry for your loss, I wish there was more I could do. I’m here if you want to talk or if I can help with anything.”

Consider sending flowers or donating to a relevant foundation, such as the March of Dimes or one that plants trees in memoriam. And keep in mind that losing your baby is often a crisis at home. Grieving parents face unimaginable decisions and a cascade of painful communications, so consider practical support like organizing a meal train.

Offer flexibility.

This grief is unique and different for everyone. While your company may have an official bereavement policy, your best move is to take the individual’s lead on when and how they return to work.

The workplace often contains triggers, and your colleague may need space and time before returning. Pregnant colleagues, office baby showers, and photos of co-workers’ babies adorning their desks can be excruciating reminders of what they no longer have.

Others may be ready to return sooner but want to ramp up over time or prefer to start from home. According to psychologist Dr. Donna Rothert, some grievers find it satisfying to return to a job that they’re good at, where they have some control and their efforts lead to results: “It is the opposite experience of losing your baby, where so much is outside of your control.” Work can also provide a welcome break with something to focus on other than grief.

The simple fact is that one size does not fit all. Consult with your team member regarding a return-to-work plan and let them come back on a timeline and in the ways that they can.

Seek guidance on what to communicate.

Consult with your colleague about what they would like communicated to the team and by whom. Ask if they would like you to send a message to the team or if they’d prefer to communicate directly or have a trusted colleague do so. Be careful not to make announcements you’re not authorized to share.

Especially in larger companies, news may travel slowly, and it can be helpful to share cues for what the person wants. For example, some people don’t want to be asked about their loss. Others want to be asked so they can say their baby’s name and remember them.

There is no right or wrong. Rather, it’s about respecting their personal needs and wishes and the rituals they have chosen.

Follow their lead.

Grief doesn’t operate in neat stages on a prescribed timeline. There can be a wide variety of responses to grief and a person’s needs and feelings fluctuate. Your best course of action is to regularly check in for how you can best support them.

You might say, “I’m glad you’re here and I imagine it’s not easy. Is there anything more that you need from me or the team?”

Some people want the welcome distraction of their work. Others might need a slower pace or fewer responsibilities for a while. Don’t make assumptions and alter their work without consulting with them first.

Returning to work can be an intense experience for grieving parents, so proactively communicate that it’s perfectly okay to take breaks, get out for walks, call their partner, or check in with trusted colleagues over the course of the day. And that if they need to suddenly leave a meeting or go home, to do so.

Remember, too, that at this point your employee may be questioning just how important work really is. While your team member will navigate to the other side of this crossroads in time, your support in the interim can ease their recovery and increase levels of organizational commitment.

Honor the memory of their child.

If your team member has expressed willingness and interest in talking about their loss, don’t back away from the conversation. But be there to listen, not talk. If they have shared their baby’s name with you, you might also ask simple questions such as, “How did you choose that name?” that allow them to remember and talk about their baby.

UCSF clinical professor of psychiatry Dr. Catherine Mallouh recommends continuing to check in every three months or so. Asking, “How are you doing?” or “Would you like you tell me more?” signals you care and haven’t forgotten.

Recognize that the anniversary of a baby’s death can be a very emotional day. Mark your calendar and proactively offer your team member the day off.

While there is nothing you can do to take away your employee’s pain, you can make their return to work more tolerable. By offering flexibility, compassion, and patience, and following their cues, you can help your colleagues feel both validated and supported.

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