Tag: Education

Posted on

Santa Claus, the Tooth Fairy, and Death

— How to talk to pediatric patients without lying

By Rebecca Morse, PhD, MA

More than ever these days, we aren’t able to hide death from children. Whether we’re addressing their fear around school shootings, natural disasters, grief from family members lost during the COVID-19 pandemic, or concerns about their own illness, it’s impossible to shield kids from bearing witness to illness and death — nor should we. So, at the very least, as healthcare professionals we need to be able to talk to them about it in the most helpful way possible, with clarity, compassion, and honesty.

Often, when we are asked to work with grieving or terminally ill children, these patients come hand in hand with caretakers who have struggled to adequately explain what has or is going to happen. And that’s not surprising — it’s not easy to know the right way to talk to kids about death. In many cultures we are relearning how to talk to adults in a post-modern medically advanced world. We use euphemisms and dysphemisms: people “pass away” after a “long illness” or “kick the bucket.” We use softening and distancing language to compartmentalize death and reduce its universality and inevitability. But death is not a four-letter word, to be whispered in hushed tones. It has five letters — and when it comes to attempting to shelter our children from these harsh realities, are we preserving innocence or ignorance?

Numerous researchers have explored death and dying from a child’s perspective: Myra Bluebond-Langner, PhD, worked with children with leukemia; Maria Nagy, PhD, and Gerald Koocher, PhD, MA, studied how children grow to understand death, and others have attempted to map a child’s death comprehension onto social-emotional and cognitive developmental stages. And while this research is important and necessary, it isn’t particularly helpful if you are sitting across from a child who is looking to you for answers, and you are torn between using adult-focused language or blurring the truth behind analogies, such as comparing death to being asleep, cancer to being like a bad cold, or telling a grieving child that their loved one died because “God needed another angel.”

Most adults would undoubtedly agree that protecting children is one of those implicit rules of caretaking. Yet, as others have recently written, when we prevent children from experiencing the world around them as amateur scientists, we also prevent them from learning key coping skills that will build resiliency during their lifetime.

Children do need reassurance. William Worden, PhD, identified key questions that children — whether they are grieving or dying — need answers to:

  • Is it my fault?
  • Is it going to happen to you?
  • Is it going to happen to me?
  • Who will take care of me?

Synopsi

Trying to understand fault is natural. An infant in a highchair quickly learns the laws of cause and effect when they drop spoons or food on the floor and the family pet eats it, or mum and dad retrieve the objects only to find the objects quickly airborne again. And again, and again. Thus, it is only natural that when something scary or bad happens, kids want to understand what came before. Therefore, being clear about what you do know is important. As a child develops death comprehension (which often comes from experience and through social learning), they also begin to understand that death can happen to anyone. Here, reassurance could look like explaining what you do know — using language at their cognitive level, without using flowery language. I liken this to how you might answer a child who asks, “Where do babies come from?” You wouldn’t (I hope!) tell a 3-year-old about insemination or a 15-year-old that “the stork brings them.” Similarly, any relevant medical technicalities about the dead/dying loved one or child should also be age-specific. Are they receiving medicine? As a shot or a pill? Will the medicine give them a tummy ache? Will their hair fall out? The last question, “Who will take care of me?” is particularly crucial; a dying child needs reassurance they aren’t alone, and that the grown-ups are going to do what they can to make sure they are comfortable. A grieving child needs to know there is a plan in place to ensure they are safe, and that someone knows how to wash and mend their favorite stuffy or will help them with their homework.

Circling back to the title, some readers may have deep nostalgia and fond childhood memories of the mythical characters that bring presents or reward lost teeth; they may recall how they gradually came to understand what was real and what wasn’t, or some horrifying slumber-party where they learned the truth from a friend’s older sibling. But unlike candy, presents, and money left behind, when we don’t share what is happening with children about death and dying as it’s happening, they lose an opportunity to observe how the adults around them might use adaptive coping techniques. They lose the chance to process the information along the way in smaller “chunks.” When we deny kids the opportunity to learn, we betray their trust and model that it’s acceptable to lie when something hurts or is uncomfortable.

If a family member (or the child) has a terminal illness or has been in an accident, explain to the child that the person is sick/injured, and we are going to try to help them get better, but that it might not work. If a treatment stops working, tell them. If death is imminent, tell them. Give the child an opportunity to say goodbye whenever possible. For younger children who might be unable to go to the hospital, you could have them draw a picture or write/dictate a letter for the person. You are helping them adapt, not stealing their childhood. One of the things we need to emphasize when working with families is that even though the child may not have an adult conceptualization of what death is, they do recognize that something is happening and that the adults around them are hiding the truth from them. In the absence of concrete knowledge of what is going on, their imaginations work overtime as they attempt to fill the gap in their understanding. Therefore, children should be given developmentally appropriate honesty. An unknown something is always scarier than a known thing.

P.S. Dying is also a five-letter word, for those of you counting.

Complete Article ↪HERE↩!

Posted on

Doctor Who Has Witnessed Hundreds Die Explains How It Feels For Person Dying

It’s one of life’s greatest mysteries – what happens when we die?

By Daisy Phillipson

Although science is yet to figure this out, a palliative care doctor who’s witnessed hundreds of people pass away has drawn on his experience to describe what the dying process looks like.

Answering a reader question on the subject for The Conversation, Seamus Coyle, honorary senior clinical lecturer at the University of Liverpool, said: “As an expert on palliative care, I think there is a process to dying that happens two weeks before we pass.

“During this time, people tend to become less well. They typically struggle to walk and become sleepier – managing to stay awake for shorter and shorter periods. 

“Towards the last days of life, the ability to swallow tablets or consume food and drinks eludes them.

Some people think our brains release a rush of chemicals in our final moments. Credit: Unsplash
Some people think our brains release a rush of chemicals in our final moments.

“It is around this time that we say people are ‘actively dying’, and we usually think this means they have two to three days to live.”

That being said, some people go through this process in just a day, while others continue on for nearly a week, which Coyle said is often distressing for the families.

He explained the actual moment of death is trickier to decipher, adding: “But a yet unpublished study suggests that, as people get closer to death, there is an increase in the body’s stress chemicals.

“For people with cancer, and maybe others, too, inflammatory markers go up. These are the chemicals that increase when the body is fighting an infection.”

One detail he was asked about is whether the last moments of life could be euphoric, perhaps triggered by a flood of endorphins.

Although Coyle couldn’t give a definitive answer as it hasn’t yet been explored, he did point to a 2011 study that showed the levels of the happy hormone serotonin tripled in the brains of six rats as they passed away.

“We can’t rule out the possibility that something similar could happen in humans,” he said.

As for the bit we’re all concerned about – pain – the doctor explained: “In general, it seems like people’s pain declines during the dying process.

“We don’t know why that is – it could be related to endorphins. Again, no research has yet been done on this.”

During his time in palliative care, Coyle has witnessed the full spectrum of deaths, from people who are anxious right up to the end to those who accept their fate early on.

“Ultimately, every death is different – and you can’t predict who is going to have a peaceful death,” he said.

“I think some of those I have seen die didn’t benefit from a rush of feel-good chemicals.

“I can think of a number of younger people in my care, for example, who found it difficult to accept that they were dying. They had young families and never settled during the dying process.

“Those I have seen who may have had an ecstatic experience towards the end of their lives were generally those who somehow embraced death and were at peace with the inevitability of it.”

Complete Article ↪HERE↩!

Posted on

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↩!

Posted on

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.

By

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↩!

Posted on

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.

Complete Article ↪HERE↩!

Posted on

Facing death

— A medical student experiences the first death of a patient

By Ileana Varela

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.

Complete Article ↪HERE↩!

Posted on

What Oncology Nurses Should Understand About Medical Aid in Dying

Lisa Vigil Schattinger, MSN, RN, discusses her experience with medical aid in dying, and what oncology nurses need to understand when supporting patients at the end of their lives.

by

For patients with cancer who are at the end of their life, being afforded the same level of autonomy in death as they experienced is life can be a vital component in providing quality care for the patient and their family, according to Lisa Vigil Schattinger, MSN, RN.

Schattinger is the founder and Executive Director of Ohio End of Life Options, a nonprofit organization that advocates for and provides education on medical aid in dying laws. In addition to being a nurse advocate, she also brings a unique personal perspective to her career.

Schattinger’s stepfather electively chose medical assistance in end-of-life care under Oregon’s Death with Dignity Act1 after he received a myelodysplastic syndrome diagnosis and learned he was not eligible for blood marrow transplant. He opted not to start chemotherapy but enrolled in hospice and received palliative packed red blood cell transfusions before electing to pursue a medically assisted death.

Her stepfather’s death was incredibly peaceful and in accordance with his wishes: he was able to walk himself into his room, sit down on the bed, and be surrounded by family as he took the medication.

“He felt empowered,” she recalled, noting that the family was grateful that the state of Oregon had allowed them this option.

At that moment, Schattinger and her mother, who is also a nurse, recognized that this option is potentially groundbreaking for certain patients and their families. As a result, they decided to learn more about the processes in place and to share their own personal experiences. Recently, the duo presented on the topic at the 47th Annual Oncology Nursing Society Congress , specifically on the role of oncology nurses in end-of-life care and the key components of medical aid in dying (MAiD) or dying with dignity laws.

In an interview with Oncology Nursing News®, Schattinger provides a quick overview of her presentation and key takeaways for nurses seeking to provide quality care.

Oncology Nursing News®: Please provide a brief overview of medical aid in dying.

Schattinger: Medical aid in dying is a law that allows terminally ill and mentally capable adults the ability to request a prescription that will hasten their imminent death. The process is patient directed; it is a voluntary process that has multiple safeguards. It is for an [individual] who understands that they are at the end of their life, understands that they are dying, and wants to determine the time and the place and [the company present] at the end of their lives.

Each state can determine if they are going to pursue the process of passing an aid [with the establishment of a] dying law or medical aid in dying law. The first one that [was passed] was in Oregon, and it is called the Death with Dignity Act. I always consider that one as kind of a baseline. As other states passed [similar] laws, they put their “thumbprint” on that law— they made it work for their state.

Currently it is legal in Oregon, Washington, California, Hawaii, Colorado, New Mexico, Vermont, Washington, DC, New Jersey, and Maine. [In addition], there was a Montana State Supreme Court decision that allows [MAiD], but it is not exactly the same as in places that have actual laws.

[To qualify], patients have to be capable of making decisions. If there is any concern that the person is not capable of making decisions, then they can be referred for a mental health evaluation. Then there are timeframes in place [these vary by state, as well]. A patient also needs a written request that is witnessed by 2 people, of whom at least 1 cannot be related to or benefit in any way from the person’s death. Then, after qualifying for the prescription, they must wait 48 hours before filling. Patients must also be able to self-administer the medication.

Anybody involved in this process can opt out at any time, physicians, pharmacists, nurses, [or] any other care provider can opt not to participate [in the process]. Of course, the patient themselves can change their mind at any time and stop the process as well.

It is also important to note that when a physician gets this request, they must inform the person of all [available end-of-life options], including hospice care.

[Interestingly] we have learned that [approximately] a third of the [individuals] who get this prescription never end up taking it. There are a combination of things going on there. [Some] say that they can relax knowing that they are able to determine if [and when] their suffering becomes too great. Others, [unfortunately,] do decline in health. And [those] who are not able to self-administer, are no longer capable of making that decision.

Should oncology nurses only be familiar with these laws if they live in a state where it is legal? How might nurses support a patient who wants MAiD, yet lives in a state where it is not an option?

The American Nurses Association put out a statement saying that because so many people now have access to this option at the end-of-life that they feel nurses are ethically bound to be knowledgeable about it. This means being able to have non-judgmental conversations about MAiD, and to be able to [inform individuals] about what end of life options are available [including hospice care and pain management].

So if, as a nurse, you live in a state without a [MAiD] law, and someone asks you about it, [best practice] is taking a moment to really focus on that person and that request and ask: What does this mean to you? What does that request mean to you? Do you understand what all your options are for care at the end of life, and that we live in a state that does not have a law?

Then, if [end-of-life medical assistance] is important enough to patient, they [might consider if they’re willing] to move to a state with a law? This is a very big question. At the end of a person’s life, that is a really big step: to decide to pull out roots from their community, their community of support, and their healthcare community of support, and move to another area, to go through the process of establishing residency–depending on where you’re living—and finding 2 doctors who will participate in this program [is a big commitment].

However, some will decide that it is important enough to them and they do want to do that. But others [will not] and so everyone needs to understand what end-of-life care options are available to them. It is important to have that full conversation to understand that their personal beliefs, values, and goals are, and to see what types of care match their needs, as well as what is available in their community.

What are some misconceptions or things that nurses may not understand about MAiD that makes it difficult for them to support it?

A lot of times [individuals] do not understand [how it is] a self-directed process. This is the patient who wants this and it is vital that they determine what the end of their life looks like.

I remember a person who said, “When I got this diagnosis years ago, I knew that my treatment options would probably run out at some point. So, I became a partner with my health care team in making medical decisions moving through the course of my illness—I made decisions on what type of treatments [I took], what surgeries, and everything else that was possible.” When it came time for [the health care team] to say, there are no longer treatments for you, [the patient] said, “I made all of those decisions as a partner up to that point, why would it change?”

Please elaborate on the ethical value of medical aid and dying and the impact that it does have on the patient.

I think that concept of autonomy and self determination to some [individuals] is paramount. Its who they are. They want partners in their health care [team] who will work with them to provide that care. Some health care providers also believe that providing compassionate care is one that meets the [patient’s] goals.

Ultimately, the concept of suffering is for the patient to determine, not for us to judge.

Until we get to know these [individuals] and fully [understand] why they are making these requests [we cannot fully understand their needs]. Whatever a patient’s definition of suffering is, compassionate care means granting their requests to manage it.

Complete Article ↪HERE↩!