Why I’m planning my own funeral in my 20s

When ABC reporter Claudia Long began preparing her funeral, she realised she didn’t want a traditional burial.

By Claudia Long

As someone in their 20s, I try not to spend too much time thinking about my own death.

And when it comes to actually planning for the event, it’s somewhere on my priority list between becoming the eighth member of BTS and holidaying on Mars.

But when a friend — citing my love of gardening — sent me a link to a new funeral home that can compost your body after you die, it sent me down a rabbit hole of caskets, wills and burial fees.

There were so many options to choose from, which for an indecisive person like me is straight up more stressful than the idea of actually dying.

I figured, why not save myself some worry and plan my own funeral.

So you’re dead, now what?

There’s quite a few ways to deal with a dead body in Australia but unfortunately composting isn’t one of them just yet.

There isn’t yet a facility providing the service here, so I’d need to get my corpse sent to the US, and while I’m all for sustainability, a logistical nightmare doesn’t seem like the kindest gift to leave my family.

So what do my options look like?

A room including a mortician's slab and a clock.
Composting may not be an option in Australia but there are modern approaches to burial and cremation that are gaining in popularity.

For most Australians, cremation is the way to go, with 70 per cent of people taking the literal dust-to-dust route.

For the rest, burial is the other most popular choice.

But modern spins on these old traditions are becoming more common, according to Griffith University death studies expert Margaret Gibson.

“The possibilities are much greater than they’ve ever been before,” Dr Gibson said.

“It’s another way of marking the finality and transitioning the body into another form. Some people find it a cleaner kind of ritual and more, I guess, more finite in that sense.”

But down the body-composting clickhole I found another option: natural burial

Death, naturally

Essentially, natural burial involves placing your remains in the ground in biodegradable coverings — at a slightly shallower level than other burials to allow for better decomposition — and letting nature run its course.

There’s no embalming, headstone or fancy coffins, to minimise impact on the environment.

So minimal is that impact, that when I went to check out my potential final resting place at Gunghalin Cemetery in Canberra, I didn’t even realise we’d reached the natural burial ground until cemetery staff pointed it out.

The burial ground, with a large stone at the entrance.
Canberra’s first natural burial ground at Gungahlin Cemetery.

Dr Gibson said the natural burial ground’s ability to blend in could make it an appealing option for councils looking for more cemetery space.

“The difficulty for local governments getting approvals to have cemeteries is that there’s always that question of where are they going to be and are they going to be close to where people live,” she said.

“The thing about natural burial is that it creates kind of a multiple space environment.

“It’s much more about a green space than a death space.”

While the process isn’t quite as common as other types of burial and cremation yet, the idea itself isn’t new.

A number of religious and cultural traditions around burial call for shrouding the deceased, as is often done in natural burials, and burying the body without embalming treatments.

Putting all your eggs in one casket

Once I’d opted to be interred at the natural burial ground, it was time to rethink any plans for a big, classic coffin (what can I say, I love drama).

When it comes to what you’ll be buried in, there’s plenty to choose from: did I want a shroud? A cardboard coffin painted by my family and friends?

A cardboard funeral casket
A cardboard funeral casket

In the end, I decided to go with a simple wicker basket, with flowers on top if my family were ok with bringing some along from the garden.

I booked in for a formal planning session with a not-for-profit funeral home, thinking now that I’d decided where and how I wanted to be buried I was set! Ready to go! Totally, 100 per cent prepared!

Not. Even. Close.

Tender Funerals is currently based in the Illawarra, with plans to be operating in Canberra by the end of the year. So hopefully by the time I die they’ll have everything ready to go.

And when it comes to funerals, turns out there are details you need to have prepared.

The planning session went for almost an hour and there were plenty of questions that needed answering.

  • Indoors or outdoors? Outside.
  • Flowers? Yes, but nothing too fancy.
  • Music? Sure, I’ll prep a Spotify playlist.
  • Eyes open or shut? Eyes absolutely, 100 per cent shut (?!).

And that’s just the start.

It’s all a bit overwhelming and that’s before you chuck a sudden death into the mix rather than one that’s hopefully decades away — a good reason to write down some ideas, just in case.

While it’s not all that common to plan and handle a funeral yourself, there’s technically nothing stopping you.

“The funeral industry doesn’t want people to take control of it,” said Dr Gibson.

“You could actually authorise your family to be your own personal funeral directors if you wanted to, it’s just that no one thinks about that and it’s not part of the conversation.

“Part of what keeps the industry going is that people don’t really want to think about their own death, they don’t think ‘ooh how exciting’.”

Who needs to know?

A funeral plan isn’t very useful if discovered under a stack of papers years after you’ve died, so you should tell your nearest and dearest what you want them to do.

A coffin sits at a funeral.
A code of practice has been introduced to safeguard WA’s $170 million prepaid funeral sector.

That could be in the form of instructions in your will, putting together a plan with a funeral home like I did, or jotting down a plan for your loved ones to execute — just make sure to tell someone where you’ve left it.

Cost-wise, even choosing a natural burial, without many bells and whistles, dying is pretty expensive, particularly if you want to have a funeral.

That cost, combined with the pressure and complications of figuring out the logistics, is pushing some to ditch the funeral altogether.

As long as your remains are dealt with, there’s no legal requirement for any funeral or ceremony to mark your death.

“There’s probably a number of factors, but certainly it’s cheaper, I think the cost of funerals is a real factor for people,” said Dr Gibson.

“In some cases, it can be because the nature of the deceased person, maybe didn’t want that and was not particularly into any kind of forms of ceremony or celebration of their life.”

But Dr Gibson said people may want to think of those left behind before instructing there be no funeral.

“I’m not sure whether in the long term that is necessarily a good thing because, you know, funerals are about recognising in this communal way that someone has died,” she said.

“It’s a symbolic act of that recognition, but it’s also connected to the capacity to be able to grieve.”

Complete Article HERE!

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!

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!

‘Night is now falling’

— This is what dying looks like

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


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!

Does grief depend on how the loved one died?


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.”

Complete Article HERE!

Facing death

— A medical student experiences the first death of a patient


Every medical student has felt apprehensive about facing death at some point, right? Maybe you have experienced someone dying before, or maybe it is something you have never seen and only rarely contemplated. Regardless, there is a subtle tension lurking during your first two years of pre-clinical studies, during which disease and death are intellectualized and abstract. Then clerkships start. Working throughout the hospital, you feel that death is lurking just around the corner. It is palpable. It is hearing a code blue being called on the overhead speaker. It is entering the room of a comatose patient who is technically “alive” but not truly “living.” Whatever one’s experience has been with death, I am confident I am not alone in having felt apprehension and anxiety towards the idea of watching a patient die for the first time.

I managed to get through half of my third year without even being near a patient who died. As I began my rotation in trauma surgery, my anxiety about the experience had evolved into dread. I was certain that whenever I did finally see someone die, it would surely result in panic. In a weird way, I wanted to just get it over with. I could hear one of my professors saying, “We all go through it, it is best just to rip the band-aid off.” As it happened, on just my second night of trauma surgery, a level 1 rolled into the bay. Five gunshot wounds – one to the arm, one to the leg, three to the abdomen. He was in and out of consciousness by the time he got to us. When he was able to speak, he only sputtered out short phrases about being scared. In almost no time, he was sedated, intubated and on his way to the OR. We scrubbed in as fast as we could.

The operation lasted five hours, but it felt much longer. For the most part, it never really looked good. His bowels were shredded from bullet fragments and every time we closed one bleeding artery, we found another. It seemed no amount of epinephrine or fluids could keep his blood pressure up. About two hours into the operation, he coded. The attending surgeon barked an order at me and I started doing chest compressions. They defibrillated him. He still had no pulse. Back to compressions. I felt the crunch of his ribs fracturing beneath my palms. My face shield fogged up from my own labored breathing and I felt sweat building up in my skin-tight surgical gloves.

“This is it, this is the first patient I will see die.” The thought crept into my head for a split second, but there was no time for those thoughts or feelings — I had to do more compressions and another shock. Suddenly, he had a pulse! A brief wave of relief came over me. We operated for another hour, but despite our efforts, his pulse continued to become slower and weaker with each passing minute. Eventually, we found a hole in his aorta and it became clear to everyone in the room that there was likely no way to prevent this man’s death. Yet, we recognized the importance of striving towards the one-in-a-million chance to save a life; so, we continued to work.

But after another hour, the surgeon received a call. A child had fallen from a tree and required the team’s attention in the operating room across the hall. There was no longer the time or resources to work toward that minuscule chance of survival for the person on the table in front of us. The surgeon called off compressions. We stopped plugging holes, most of which at this point had little blood left to spurt out. Most of the team ripped off their surgical gowns and hurried off to start the routine over again next door. Suddenly, the only people in the room were me, an intern, a nurse and this man on his literal death bed.

His heart was barely beating, a mere technicality keeping him alive for a few more moments. My job was to keep my hand on his aorta and notify the surgeon when there was no longer a pulse so he could call the time of death. All of the monitors had been turned off and the room was silent. I held the now deflated tube of tissue between my fingers, closely focusing to detect the weak, irregular pulsations coming from a desperately failing heart.

Now, there was much more time and space for that dreaded thought to creep in. Surely, this is when I would recognize the reality of the situation and panic from the experience of witnessing death so intimately. Yet surprisingly, fear and dread were hardly present. Rather, I was simply sad. I was sad for this man I knew nothing about whose life was violently cut short. I was sad for his friends and family. At the same time, however, I was proud. I was proud to be feeling for this dying stranger rather than wrapped up in my own anxieties about death. More importantly, I was proud to have been part of what felt like the best effort possible to save this man’s life. My thoughts were interrupted when I recognized the stillness of the aorta. It was over. The surgeon came back to call the time of death and we sutured his wounds as neatly as we could. Even throughout this routine, I felt the gravity of the task at hand. My sense of pride persisted, knowing that we were still working hard to make the coming experience for his loved ones at least slightly less traumatic.

What made facing death more tolerable that day was the efforts made along the way. Feeling powerless is perhaps the most overwhelming aspect of death. But it is now abundantly clear that small efforts in the world of medicine provide a certain sense of empowerment and peace even in the face of horrific and inescapable outcomes. What I will remember from my first death is that we worked to provide a fighting chance and maybe even some eventual comfort to his loved ones. Efforts like these provide clinicians hope for a better outcome next time or, at least, help a family find some peace knowing that everything possible was done. They preserve patients’ dignity in both life and death. Now, I am sure that feelings like fear and anxiety will oscillate throughout my career — after all, medicine is imperfect, things go wrong and people suffer despite our best efforts. I recognize now, however, that the best way to combat our sense of powerlessness when facing outcomes that are out of our control is to appreciate the small differences we are able to make. Ultimately, these seemingly-minimal differences give medicine its meaning, make the hard times more tolerable and, more broadly, make this a field I am proud and confident to be joining.

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Advance directives: A new look at future health care wishes

An advance directive is a voluntary, legal document that articulates an individual’s wishes regarding future medical care and treatment.

By Gloria Brigham, EdM, MN, RN

As highlighted during the COVID-19 pandemic, individuals have preferences about their life and future. These preferences arise from values, cultural norms, knowledge and available information. They are influenced by past experiences and the consequences of previous decisions. Periodically, preferences change.

Health care planning for the future is important to ensure that your wishes are known and followed when you are unable to speak for yourself. Sharing what matters to you most (in writing) is one way to clearly communicate with loved ones and health care providers.

What is an advance directive?

An advance directive is a voluntary, legal document that articulates an individual’s wishes regarding future medical care and treatment. It is valid from the time of completion until the end of life. In Washington state, there are two types of advance directive that can be completed by adults 18 and older:

  • Durable power of attorney for health care – The durable power of attorney for health care is also called a medical power of attorney or health care agent. This is an individual that you choose to make health care decisions (on your behalf) if you are unable to make them for yourself. The health care agent cannot be under 18 years old, your health care provider or an administrator/employee of a health care facility where you receive care or live.
  • Health care directive – A health care directive is also referred to as a living will. This written document includes the type of medical care and treatment that you wish to have near end-of-life, if any. This document informs health care professionals of your preferences in the event of an accident or life-threatening illness when you are unable to speak for yourself.

Who should complete an advance directive?

It is advised that everyone over the age of 18 have an advance directive. The reality is that no one knows when an event might occur that renders us incapable of making our own decisions.

How is an advance directive completed?

Fill out advance directive forms found on the Honoring Choices Pacific Northwest website1. An attorney is not needed for an advance directive. Once your advance directive forms are complete, they are legally valid when notarized or signed by two “disinterested” witnesses. Witnesses must be 18 years of age and cannot be related to you by blood or marriage and cannot be your attending provider or an employee of your provider or the health care facility where you are a patient or receive care.

How is POLST different from an advance directive?

According to the Washington State Medical Association, Portable Orders for Life-Sustaining Treatment (POLST) is a medical order that addresses emergency care wishes for seriously ill individuals. POLST is not for everyone. It is intended for individuals in poor health who want to have the choice not to pursue selected treatments in response to a health emergency2.

Inspiring individuals to complete an advance directive supports individual choice and autonomy regarding personal care preferences at end of life. Once complete, advance directive copies are provided to the people close to you, such as your health care agent, loved ones, and your health care providers. If advance directive changes are necessary, share those changes and provide an updated copy of the advance directive to those that matter to you. For additional information visit www.honoringchoicespnw.org.

Complete Article HERE!