Tag: Grief and Grieving

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How to Grieve for Online Friends You Had Never Met in Person

We often use technology to form meaningful relationships with virtual strangers. But what happens when the person on the other side of the screen dies?

By Cindy Lamothe

Last November, Kristi Pahr felt both shock and denial after learning that her online friend of over four years, Amy, had died suddenly. She says she still cries remembering those initial days of grief. Amy, she said, “was a better, more ‘real’ friend to me than most people I know in person.”

Ms. Pahr, 41, a freelance writer from South Carolina, first met Amy through mutual friends in an online Star Wars game back in 2013. She fondly recalls a similar “geekiness” and love of fantasy novels quickly bonded the two. “We chatted every day, shared pictures of our kids,” complained about their spouses. And though she and Amy knew each other only virtually, their daily texts evolved into years of mutual support and understanding. “She encouraged me to start submitting my writing for publication,” Ms. Pahr said, “and was one of the only people I ever let read the things I wrote before I was published.”

Today around 70 percent of Americans connect over social media, according to the Pew Research Center. Although many of us are talking to people we know in real life, it’s easy to form connections with people we have never met in person.

More than ever before, we are using our smartphones and technology to form meaningful relationships with virtual strangers, both in romance and friendship; we celebrate one another’s successes, share our individual struggles, and despite geographical limitations, these bonds often span years. But what happens when the person on the other side of the screen dies?

Finding out about her friend’s death last fall was devastating, said Ms. Pahr, who recalls scrolling through her newsfeed one day and stumbling upon a post from someone outside of her contacts offering condolences to Amy’s family. “I was dumbstruck and thought it must’ve been a mistake.”

She remembers frantically messaging Amy soon after, and waiting for the “read” indicator to pop up next to the message — only to have it remain unanswered.

“Days passed and I still waited,” she said. “I kept expecting to find out it was a different person, or that someone had been wrong.” Not knowing what else to do, she eventually reached out to Amy’s husband by messenger, who confirmed her friend had passed away. “I was a disaster for a while, randomly crying throughout the day.”

Our ideas about which relationships are “real” have not caught up with the ways we actually live and connect, said Megan Devine, a Portland-based psychotherapist and author of “It’s OK That You’re Not OK.” She’s adamant that this deep sense of loss isn’t limited to in-person friendships.

One of the difficulties Ms. Pahr faced after Amy’s death was a lack of empathy from others. “Even well-meaning and compassionate people don’t place the same weight on your grief,” she noted, the way they would if you lost a friend you knew in person.

“Grief is often unacknowledged in western culture, no matter what the cause,” Ms. Devine said. In fact, the societal norms around grieving cyber relationships is still relatively new, and to this day, remains largely unexplored. “When you add in the non-corporeal relationship, the pain can be even more invisible.”

This can often lead people to experience what psychologists call “disenfranchised grief,” a term coined in 1985 by Dr. Kenneth J. Doka to describe a loss that isn’t acknowledged by others. As he explained in his book “Disenfranchised Grief: Recognizing Hidden Sorrow,” these losses can often deprive a person of the catharsis found in shared bereavement. “You don’t really have a socially sanctioned right to grieve,” said Dr. Doka, who teaches gerontology at the College of New Rochelle in New York. “But these relationships can be very profound.”

Understanding the unique challenges of cybergrief can validate how a person may be feeling. Here are five ways of coping with the loss of an online friend.

Don’t Dismiss It

“In many ways, the grief is twofold,” said Dr. Kathleen R. Gilbert, author of “Dying, Death, and Grief in an Online Universe,” because a person isn’t only grieving their loss, they’re also grieving for the loss of support they had hoped they would receive from other people. Often times, Ms. Devine explained, it’s our in-person friends or family who can be confused or dismissive of our grief. But, she emphasizes, the first step forward is to acknowledge that all relationships are important, whether we see someone physically or not.

Claim Your Grief

One of the things the internet does is expand our awareness of the world beyond the corporeal one we know. Social media allows us to develop a construct of another person, their hopes and dreams — and similarly, share our own. Many of us have spent years cultivating relationships based on words and images.

This has been true for Ms. Pahr: “Friendships and what it means to be friends has changed so much in the last 20 years,” she said. “The fact that you can be BFFs with someone without ever hearing their voice or touching their skin is mind-blowing to some people.”

Cyberloss isn’t any less genuine or deeply significant simply because the interactions took place online. As Ms. Devine explains, every grief is valid, and just because you aren’t in the same room, or connecting over tea in your home city, doesn’t mean you don’t rely on the person, or count them among your inner circle. “The only person who gets to decide what grief looks like is the person experiencing it.”

Gently Reach Out

Whether or not we should contact the person’s family with our condolences can be tricky. On the one hand, we want to express how much they meant to us, but we’re also wary of intruding.

Ms. Devine encourages gently reaching out to the family or friends of the person with a quick message or email sharing a favorite memory, and letting them know we join them in wishing things were different. Family members may not recognize your message in the initial days and weeks after the death, “but many people take great comfort in learning how vastly loved their person is.”

When it comes to attending the funeral, she cautioned that there are boundaries to keep in mind. While everyone has a right to grieve, if we aren’t in the epicenter of the loss — as in immediate relatives and loved ones — we might feel less recognized at in-person events like memorials or funerals. Even so, attending them shouldn’t be ruled out altogether. Go if it feels right, Ms. Devine suggested, but do not shove your way into the inner circle. “Your relationship is valid, but it’s different from the partner, parent, child, sibling, etc.,” she said.

Create a Ritual

The hardest task of mourning is to accept the reality of the loss, said Julia Samuel, a London-based psychotherapist and author of “Grief Works: Stories of Life, Death, and Surviving.” If someone is an online friend, she explained, there may be less concrete experiences or objects on which to focus one’s grief, which could make it hard to really believe the person has died. She advises the importance of creating a ritual that represents an ending, whether by lighting a candle and saying a prayer or poem, or going to a place of worship to do something similar. Dr. Gilbert likens this to a ritual of transformation: “The person is no longer available to me, but I can still have in my heart a connection with them.”

Find Your People

While the pain of grief may lessen over time, Dr. Doka noted that we never really get over a loss, we learn to live with it. That includes cybergrief. “Even years later, people can have surges of grief,” he said. Though it will feel difficult at times, finding support through a trusted counselor or online bereavement community can be an invaluable way of receiving the validation we need.

Of course, creating relationships — online and off — that are based on care, support, kindness and empathy are your best resource, adds Ms. Devine. Investing in all of those friendships is your best insurance, “that way, no matter what happens, you have a net to surround and support you.” As Ms. Samuel put it, “What we need most when someone we love has died is the love of others.”

Complete Article ↪HERE↩!

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The five stages of grief don’t come in fixed steps

– everyone feels differently

Grief is an individualised process.

By

Grief can seem desolate for those in the thick of it who often feel unable to imagine a way out of their suffering. But, as time passes, the pain usually dampens or becomes more fleeting.

Understanding the normal trajectory of grief matters for the person experiencing the grief and those treating them. Attempts to provide a map of the bereavement process have typically proposed a sequence of stages. The “five stages” model is the best known, with the stages being denial, anger, bargaining, depression and acceptance.

While there is some evidence for these stages, the experience of grief is highly individualised and not well captured by their fixed sequence. Some of the five stages may be absent, their order may be jumbled, certain experiences may rise to prominence more than once and the progression of stages may stall. The age of the bereaved person and the cause of death may also shape the grief process.

Stages of grief

The first major attempt to outline the stages of grief was made by British psychiatrist John Bowlby, father of attachment theory, an influential account of how infants and children form close bonds to their care-givers. Bowlby and his colleague Colin Parkes proposed four stages of grieving.

The first is of numbness and shock, when the loss is not accepted or seen as not real. The second stage of yearning and searching is marked by a sense of emptiness. The mourner is preoccupied with the person who has been lost, seeking reminders and reliving memories.

In the third stage, despair and disorganisation set in. This is a sense of hopelessness and sometimes anger where the bereaved person may withdraw into depression. Finally, in the re-organisation and recovery stage, hope rekindles and there is a gradual return to the rhythms of daily life.

Bowlby and Parkes’s model, first proposed in the early 1960s, may have been the first. However, it’s Swiss-American psychiatrist Elisabeth Kübler-Ross’s model coined in 1969 that has become the most widely known. Her five stages of grief – originally developed to map patient responses to terminal illness – have become famous. They have been applied not only to responses to death but also to a variety of other losses.

Kübler-Ross’s first stage, denial, resembles what Bowlby and Parkes labelled numbness and shock, but her second, anger, departs from their scheme. The affected person demands to understand why the loss or illness has taken place, and why it has happened to them. In the third stage, bargaining, the person may be consumed with “if only”, guiltily wishing they could go back in time and undo whatever may have led to the illness, or death.

Stages four and five involve depression and acceptance. Despair and withdrawal gradually give way to a sense of fully acknowledging and making peace with the loss.

Evidence for the five stages

Kübler-Ross’s stages emerged from her clinical work with dying patients rather than systematic research. Empirical support for the existence of the proposed sequence of stages has been scant but intriguing.

One study followed 233 older adults over a 24-month period after the death of a loved one from natural causes. It assessed them on experiences associated with a modified version of Kübler-Ross’s stages. In accord with her theory, each of the five experiences peaked in the predicted order.

Disbelief was highest immediately after the loss and declined gradually thereafter. Yearning, anger and depression peaked at four, five and six months respectively before declining. Acceptance of the loss rose steadily over the two-year period.

Seeking reminders and reliving memories are often part of the grieving process

Problems with the stage model

Although the sequence of peaks matched Kübler-Ross’s model, some aspects of this research also challenged it.

First, although disbelief was at its highest immediately after the loss, it was always less prominent than acceptance. Acceptance is not a late stage of resolution for people who are grieving, but an experience that prevails from the start and continues to grow.

Second, yearning was the most prominent negative experience, despite being omitted from the most well-known version of Kübler-Ross’s five stages. This points to the limitations of framing grief in the clinical terms of depression, which study participants experienced less frequently than longing.

But the study’s findings can’t necessarily be generalised as it looked only at older adults and natural causes of death. Another major study found the typical pattern of grieving among young adults was substantially different.

Yearning peaked before disbelief, and depression remained constant without resolving over two years. In addition, yearning, anger and disbelief returned with a second peak near the two-year mark, when acceptance also declined.

Moreover, young adults whose loved ones died by violent causes differed from the typical pattern. For them, disbelief dominated their first months, and depression initially declined but then rose again as the second anniversary of the death approached.

The way a person has died may shape the process of grief for their loved ones.

All these findings represent the average responses of a sample rather than the trajectories of individual participants. Even if the Kübler-Ross’s stages partially reflect the statistical tendencies of the whole sample, they might fail to capture how individuals’ experiences of grief unfold.

That is the conclusion of a study that followed 205 adults over an 18-month period following the loss of a spouse. These adults had been interviewed for a related study prior to the loss.

The researchers found evidence of five distinct trajectories, with some people being depressed before the loss, and recovering afterwards. Some fell into a long-lasting depression, while others were fairly resilient and had experienced low levels of depression throughout.

States of grief

Kübler-Ross came to acknowledge the reality that her stages compose an appealing narrative of recovery rather than an accurate sequencing of grief. Experts now place less emphasis on her stages as a series of steps on the bereavement journey, much as they have tended to lose faith in other stage theories of human behaviour.

For all its limitations, Kübler-Ross’s analysis still has value. The supposed stages of grief may be better understood as states of grief: recognisable experiences that rise to the surface in distinctive ways in each person’s sorrowful passage through loss.

Complete Article ↪HERE↩!

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The Raw Feeling of Losing a Fiftysomething Friend

The death of a friend provokes difficult reflections for this writer

By Judy M. Walters

My husband’s friend died last week. He was 57. That’s how old my husband is.

His friend was a great guy, married, a father of three, always kind and generous, thoughtful and considerate. We both liked him a lot. He developed a chronic form of cancer about 10 years ago, and for a long time he just lived with it. Every so often, he’d have to go off for chemo or tests or surgery, and then he would come back like before, still the great guy he had always been.

Until a few weeks ago, when suddenly the cancer was everywhere and no one could do anything except watch him die.

So it wasn’t like we were surprised.

It was more like shock. How could a 57-year-old man with children barely into their 20s die, even if he’d had cancer for 10 years? Even if that was what the doctors had told him would happen? Even if he had grown weaker over the last few years, and no treatment seemed to be working after a while?

It’s hard for us to wrap our brains around it.

Considering Our End-of-Life Wishes

My husband and I have talked about death a lot. I don’t consider us weirdly obsessed with the subject, but we have definitely talked about it. We talk about what we will want when we are dying — not to be kept alive by artificial means or if in pain that will result in death anyway. My husband has a living will (an advance directive laying out wishes regarding medical treatment when you’re not able to convey them); I do not, but I will get on that soon.

We’ve discussed, at length, what I will do if my husband dies — he is especially prepared for that one. “Go right to the special green folder,” he’s told me more than once. The green folder is filled with codes for me to get to our money and his life insurance.

We talk about what we might do if the other dies. How long is it okay to wait to look for a future spouse? My husband says, “At the funeral,” but I’m pretty sure he’s joking. I say: Not for at least a year. In fact, I’ve told my husband, friends and family, I can never imagine being married to anyone else. Which is why when someone my husband’s age dies, I think: Would I be happy being single the rest of my life? I am 50. Would I really want to start all over, to date?

What I Imagine Would Happen

I know some things I would do. I would sell the house. It’s too big and unwieldy for me to manage myself, and it will be too expensive — mortgage, maintenance — to deal with. But then where would I go? I don’t know. All my friends would still be married. I would be alone.

Of course people wouldn’t tell me I was alone. They’d tell me they were right there with me. But they would still be couples, doing couple things together. They would invite me for dinner now and then but not when they were having date nights, or on vacations because who wants your single friend to come on vacation with you and your spouse?

Fifty-seven is too young to die. You miss out on all of the good stuff. Retirement. Vacations. You don’t get to go to the movies during the day just because you feel like it. You don’t get to have lunch at the diner with all your friends because no one is working anymore and there’s nothing else to do.

You don’t get to ever hug your spouse or kids again. You don’t get to watch your grandchildren grow into awkward teenagers who you think are the cat’s pajamas, even though you know they are actually royal pains in the neck to their parents and you sort of enjoy it after what you went through with your own kids. At 57, you feel like you still have another whole life to live.

But then it’s all gone. All of it. And you made the most of it while you were living it, but you are still missing so much. While you might not know anymore, your family will know. They’ll name kids after you and talk about you at all the family functions. Your kids will desperately try to keep you alive, even though you will never be old enough to need to be kept alive.

Fifty-seven is too young to die. My husband is 57. But our friend was 57. So it happens, and more than we would like to think. When it happens like this, you can’t help but wonder, will it happen to you, too?

Complete Article ↪HERE↩!

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How to Deal With a Bereavement As a Teen

Dealing with a death as a teenager can be extremely hard. Many teens have lost loved ones, so you aren’t alone!


1
Never be afraid to cry. Crying is good for you. It helps you let go of some of the hurt or anger you may have. You shouldn’t feel weak or silly while crying. After all this shows that you loved the person and that they were important to you.

2
Talk to someone you trust. This could be a parent or guardian, your best friend or if you are religious, a pastor or priest. Talking about the one you loved can help you remember all the good memories you have had with them.

3
Help yourself to remember them. Listen to their favorite songs, look at pictures, read their favorite poem, plant their favorite flower in your garden. This is a good thing as it means you still have a small part of them with you.

4
Don’t blame yourself. This is a common reaction to the death of a loved one, but remember they wouldn’t want you to blame yourself.

5
If you are religious, find comfort in the fact they have gone to a better place. Remember that they are more peaceful, and there is no more hurt or pain were they are now.

6
Visit their grave site. This can bring some comfort as you can take care of their grave site. If you do not like visiting a resting place it does not mean you are a bad person, they would understand that maybe you don’t want to remember them that way.

7
Pray. Sometimes it can sound silly but if you are religious or even if you aren’t this can bring a lot of comfort as you feel closer to the person, you can talk to them and ask them to watch over you and keep you safe.

8
Have some alone time. Time on your own can help you get your thoughts together. Sitting in silence for a while can be quite comforting and can help you feel better.

9
Remember the person how you want to. Do not let other people tell you how to remember the one you loved. Remember them however you want. Your love for them could have been different than others.

10
Remember that they loved you. They always will and by feeling pain this shows you also loved the person.

11
Say goodbye. Say it however you want. Scattering the remains in a place they loved can bring some closure, also having a service can help you say goodbye.

Complete Article ↪HERE↩!

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Learning To Grieve:

The Show Making Millennials Talk About Death

By Natalie Gil

Death is one of life’s few inevitabilities (along with taxes) but despite its certainty, dying and how we deal with it are still taboo topics in many countries.

A new BBC Three documentary explores how millennials grieve and how we can learn to do it better. Fronted by the presenter and musician George Shelley (of X Factor, Union J and I’m A Celebrity… fame), Learning To Grieve features intimate discussions with his family and friends about dealing with grief in the aftermath of his 21-year-old sister’s sudden death in a road accident in May 2017, alongside a broader look at how younger generations cope with grief and its impact on wider society.

He meets several other young people who have experienced loss to get advice and guidance about coping with grief in 2018.

Research has linked bereavement to increased rates of suicide and mental health problems among young people, and Learning To Grieve explores this connection head on. Shelley discusses his own use of antidepressants and experiences of therapy since his sister’s death, and the tough time he had in the immediate aftermath. “My days were just a blur of takeaways, Netflix and escaping with video games – anything to shut off from the real world,” he wrote about the experience recently. “All I can remember from that period is darkness and I just sank deeper into depression.”

What on earth are you meant to do when your mum has just died? I had no idea – so I carried on as if everything was normal.

One millennial featured in the documentary is Beth Rowland, 24, who lives in Nottingham. She lost her mum to liver cancer in July 2015 after her second year of university. She describes feeling like she was “stumbling around in the dark, with no idea what to do or how to function” in the aftermath, but she does remember very clearly going for a haircut just hours after it happened.

“I had it booked, had been looking forward to getting a new style, and I had no idea how to call the hairdressers to cancel my appointment,” Rowland told Refinery29. “So I went along, sat in the chair and answered ‘fine, thanks’ when the hairdresser asked how my day had been. That’s a perfect example to me of how confusing bereavement is, and often how ridiculous it can be. What on earth are you meant to do when your mum has just died? I had no idea – so I carried on as if everything was normal.”

Beth as a baby, with her mum

Rowland got involved with the documentary to prevent other young people from plummeting to “the bad place” she was in, she said. Not only is bereavement normal, but so many people know exactly how you’re feeling. “When I lost my mum, I didn’t think I knew anyone who had been bereaved, but there were actually a lot of people already in my life who had been through the same pain. Unless we talk about loss, it will continue to be something people hide away, don’t know how to talk about, and that ultimately can lead to an increase in risk of mental illness.”

She believes everyone in the UK finds it difficult to talk about loss (because of our ingrained “stiff upper lip” culture), but younger generations struggle most and particularly those who have lost parents. “It’s not normal to not have a mum at 20 – all my friends flock to social media on Mother’s Day to share that their mum is the best mum, friends get married with their mum next to them, others say they couldn’t possibly have become a mother without their own mum beside them.” This, she believes, is why so many young people find it hard to talk about losing family.

In 2015, Rowland set up Let’s Talk About Loss, the UK’s first support network for young people aged 16-30 who have been bereaved. “I knew that to get through my experience, I had to do something proactive and positive that would make the world a little bit better. I felt so alone and confused when we lost Mum, and was diagnosed with severe anxiety and depression in 2017 after bottling up my feelings for too long. I’m not ashamed to say that my mental health was very bad and at one time I was considering suicide – I just didn’t know how to live without my mum. I’m in a much better place now but I’m only too aware how easy it is to struggle when you’ve been bereaved.”

You might have thousands of Twitter followers but be sat alone at home on a Friday night, feeling completely isolated.

Young people are increasingly talking openly about their feelings, in part due to the gradual falling away of the stigma surrounding mental health, and very often they’re doing it on Instagram, Twitter, Tumblr, blogs and other online spaces. This is progress, of course, but Rowland is concerned that talking online doesn’t eradicate the loneliness issue. “You might have thousands of Twitter followers but be sat alone at home on a Friday night, feeling completely isolated and without any form of support network.” Which is why Let’s Talk About Loss holds monthly real world meet-ups, as well as offering online support, which enable attendees to “talk openly about grief wherever and whenever we feel ready and comfortable.”

Rowland’s advice to other young people currently grieving is always to find their support network. “It doesn’t matter who they are, just find people who care about you, will be there for you when you need them, and who will let you talk.” She also recommends contacting local and/or national support groups and charities like Mind, Young Minds, Student Minds, Cruse and Widowed & Young. “However you are feeling, however bad it might seem – you are not alone and you can get through this, I promise.”

George Shelley: Learning To Grieve is available to watch on BBC Three from Sunday 30th September.

If you or someone you know is struggling to cope with grief, contact the bereavement charity Cruse online or over the phone on 0808 808 1677. You can also contact Rowland’s support network for young people, Let’s Talk about Loss, via email at hello@letstalkaboutloss.org.

Complete Article ↪HERE↩!

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The Art of Dying Well

It’s been nearly two years since Colorado passed the End-of-Life Options Act. How has the controversial law affected Centennial Staters, and how, exactly, does one plan for a good death?

By

Merely Mortals

This is a story about death.

About how we in the United States—and maybe to a slightly lesser degree, here in Colorado and the West—tend to separate ourselves, emotionally and physically, from both the ugliness and the beauty of our inevitable ends. We don’t like to think about dying. We don’t like to deal with dying. And we certainly don’t like to talk about dying. Maybe that’s because acknowledging that human bodies are ephemeral short-circuits American brains groomed to (illogically) hope for a different outcome. Perhaps it’s also because the moment death becomes part of the public discourse, as it has in the Centennial State over the past several years, things can get uncomfortably personal and wildly contentious.

“As a society, we don’t do a great job of talking about being mortal. My secret hope is that this [new law] prompts talks about all options with dying.”

When Coloradans (with an assist from Compassion & Choices, a national nonprofit committed to expanding end-of-life options) got Proposition 106, aka the Colorado End-of-Life Options Act, on the ballot in 2016, there was plenty of pushback—from the Archdiocese of Denver, advocacy groups for the disabled, hospice directors, hospital administrators, and more physicians than one might think. But on November 8, 64.9 percent of voters OK’d the access-to-medical-aid-in-dying measure, making Colorado the fifth jurisdiction to approve the practice. (Oregon, California, Montana, Washington, Hawaii, Vermont, and Washington, D.C., have or are planning to enact similar laws.) Not everyone was happy, but if there’s one thing both opponents and supporters of the legislation can (mostly) agree on, it’s that the surrounding debate at least got people thinking about a very important part of life: death.

“As a society, we don’t do a great job of talking about being mortal,” says Dr. Dan Handel, a palliative medicine physician and the director of the medical-aid-in-dying service at Denver Health. “My secret hope is that this [new law] prompts talks about all options with dying.” We want to help get those conversations started. In the following pages, we explore everything from how to access the rights afforded in the Colorado End-of-Life Options Act to how we should reshape the ways we think about, plan for, and manage death. Why? “We’re all going to die,” says Dr. Cory Carroll, a Fort Collins family practice physician. “But in America, we have no idea what death is.” Our goal is to help you plan for a good death—whatever that means to you.

Death’s Having a Moment

Colorado’s end-of-life options legislation isn’t the only way in which Coloradans are taking charge of their own deaths. Some Centennial Staters have begun contemplating their ends with the help of death doulas. —Meghan Rabbitt

As the nation’s baby boomers age, our country is approaching a new milestone: more gravestones. Over the next few decades, deaths in America are projected to hit a historic high—more than 3.6 million by 2037, which is one million more RIPs than in 2015, according to the U.S. Census Bureau. Here in Colorado, home to Boulder’s Conscious Dying Institute, there are a growing number of “death doulas” trained to help us cross over on our own terms.

Death doulas offer planning and emotional support to the dying and their loved ones, and since 2013, the Conscious Dying Institute has trained more than 750. Unlike doctors, nurses, hospice workers, and other palliative-care practitioners who treat the dying, death doulas don’t play a medical role. In much the same way that birth doulas help pregnant women develop and stick to birth plans, death doulas help their clients come up with arrangements for how they want to exit this life. That might mean talking about what projects feel important to finish (like writing that book) or helping someone make amends with estranged family members or friends or determining how much medication someone wants administered at the end. “When people are dying, they want to be heard,” says Nicole Matarazzo, a Boulder-based death doula. “If a doula is present, she’ll be able to fully show up for the person who’s dying—and model that presence for family members.”

Over the past year, the Conscious Dying Institute has seen a noticeable jump in the number of Coloradans using its directory of doulas and inquiring about training. When she started working in end-of-life care in 1998, founder Tarron Estes (pictured) says no one had heard of death doulas. Now she’s getting roughly 25 calls a week. “More people are getting comfortable talking about death,” Estes says. “In cities like Denver, there’s a willingness to talk about topics that are taboo in other areas of the country.” Medical aid in dying is, of course, a prime example.

That embrace of the end might be just another part of what is becoming known as the “death-positive movement.” More than 314,000 people have downloaded a free starter packet from the Conversation Project, a nonprofit that gets people talking about their end-of-life wishes. And more than 6,700 “death cafes,” where people gather to talk about death over tea and cake, have popped up around the nation, including several in Colorado. Ready to make a date with death? The Denver Metro Death Cafe’s next meeting is on October 20.

Knocking On A Death Doula’s Door

What to look for in an end-of-life guide.

1. Ask to see a certificate of education and research the organization that provided the doula’s training. Look for curricula that involve at least some in-person instruction. For example, the Conscious Dying Institute’s eight-day, on-site training portion includes lectures, writing exercises, demonstrations, and partner practices. It’s also split into a three-day session and a five-day session, with a 10-week internship requirement between each on-site phase.

2. Compare fees. Death doulas in Colorado charge about $25 to $125 an hour and may offer a sliding scale based on their clients’ financial means.

3. Pay attention to the doula’s listening skills. The last thing you want as you prepare to cross over is someone who hasn’t been hearing you all along.

Ink Your Legacy

If a good death includes making sure your family is cared for, one of the greatest favors you can do for your loved ones is to provide a clear path to all of your worldly possessions. Putting in the time—and paperwork—to plan for the dissemination of all your stuff can save your family months of headaches, heartaches, and contentious probate battles. Not sure what kind of estate planning documents you need? We spoke with Kevin Millard, a Denver-based estate planning attorney, to help you get started.

If you don’t you care about who gets your stuff…
Great; then you probably don’t need a will. If you don’t have a will, your stuff—cars, jewelry, artwork, etc.—goes to your closest relative(s) under what are known as “intestate succession laws” (the laws that govern how your stuff is divided after your death). The state maintains very specific equations for different scenarios. For instance, if you die with a spouse and children from a previous relationship, your spouse gets the first $150,000 of your intestate property plus half of the remaining balance, and the descendants get everything else. Or, if you die with a spouse and living parents, your partner gets the first $300,000 of your intestate property and three-quarters of anything over that. Your parents get

If you do care about who gets your stuff and some of your “stuff” is minor children…
At the very least, you need a guardian appointment document to determine who will care for your children after your death. Physical custody is different from managing any money you might have set aside for your children. You can name one person to manage the money and another to actually care for your children. Also, if your selected guardian doesn’t live where you do, he or she gets to decide whether or not your kids have to move.

If your most valuable stuff is not really “stuff” at all, but more like life insurance policies, 401(k) plans, bank accounts, etc…
Then you’ve probably already designated who gets what by appointing a beneficiary for those things. Anything with a beneficiary—life insurance policies, payable-upon-death bank accounts, retirement plans, or property held in joint tenancy (e.g., your house)—does not get distributed according to intestate succession laws (the laws that govern how your stuff is divided after your death if you don’t have a will). It goes to the listed beneficiary. However, you might want to consider also designating a durable financial power of attorney to manage all of your accounts in the event you become incapacitated before you die. Ditto for a medical power of attorney.

If your stuff is worth millions…
In addition to a will, you should consider a trust. This can protect your estate from being included in lawsuits if you’re sued, and it can also ease some of the estate tax burden on your heirs. But if you’re worth millions, then you probably already have people on retainer who’ve told you this.

If your stuff isn’t worth millions…
You need a will if you want to make life easier for your heirs. (In Colorado, any estate valued at more than $65,000 must go through probate court—a process that takes many months to finalize because you cannot close an estate here until six months after a death certificate has been issued, which can take several days or even weeks.) The general rule in Colorado is that a will must be signed by two witnesses to be valid. If you go through the trouble of having it notarized, it becomes a self-proving will, which means the court doesn’t have to track down the witnesses to certify its validity. You can also handwrite and sign your will; that’s known as a holographic will and does not require witnesses—but it does come with a lot of hand cramps.

My Father’s Final Gift

When it came to preparing for the end of his life, my father planned for the worst, knowing that would be best for me. —Jerilyn Forsythe

It was June in Arizona, and it was hot inside my dad’s kitchen. The whole place smelled musty, the way old cabins do, and I watched as a swath of sunlight coming through the window illuminated lazy plumes of dust. My thoughts felt as clouded and untethered as the drifting specks. I had flown in from Denver the day before and driven more than 100 miles from Phoenix to collect some of my father’s things and bring them to the hospital, where he lay in a medically induced coma.

It had all happened so fast. I’d received a midnight call from a neurosurgeon in Phoenix—the same one who had done a fairly routine surgery to mend a break in my dad’s cervical spine a few weeks earlier. Somehow, the physician said, my father had accidentally undone the surgery, leaving two screws and a metal plate floating in his neck. The doctor explained that he had operated emergently on my dad, who would be under a heavy fentanyl drip—and a halo—until he stabilized.

Although my parents had been divorced since I was two years old, my mother was there to help me that afternoon in Dad’s cabin. Between coaching me through decisions like which of his T-shirts to pack and whether or not I should bring his reading glasses, she happened upon a navy blue three-ring binder, with a cover page that read “Last Will and Testament, Power of Attorney & Living Will for Larry Forsythe,” in his bedroom.

He had never told me about the binder, but my name graced nearly every page within it. On a durable financial power of attorney. On a durable medical power of attorney. On a living will. And on his last will and testament. My typically nonconformist dad had prepared a collection of legal files that would become my bible in the ensuing months.

During the roughly 16 weeks he was hospitalized, I would reread, reference, fax, scan, copy, and email those documents—particularly the powers of attorney—countless times. I also thought, on nearly as many occasions, how fortunate I was that my dad, who probably struggled to pay for a law firm to draw up the papers, had done so just a year before he was unexpectedly admitted to the hospital. Without his wishes committed to paper, I know I would not have been able to fully and confidently make decisions on his behalf. But, navy blue binder in hand, I was empowered to speak with authority to doctors, nurses, bank executives, and even the cable company, which would not have stopped the monthly payments that were dwindling his already heartbreakingly low bank account had I not been designated his financial power of attorney.

I always thought that having a sick or dying loved one meant hospital visits and flowers and tears—all of which is true—but I spent far more time on the phone with medical professionals, financial institutions, and social workers than I did crying. I imagine all of that strife would have been magnified dramatically had we not found that binder.

My dad died a year ago this month. His passing brought more challenges for me, but for a long time after, I silently thanked him for having the foresight to visit that estate planning law firm, for considering what I’d go through when he was no longer here. It was one of the last—and best—gifts he ever gave me.

Process Oriented

Navigating the myriad steps to legally access medical-aid-in-dying drugs can be an arduous undertaking already. Some obstacles, though, are making it even more frustrating for terminally ill patients and their families.

Step No. 1: Determine Eligibility

For a person to be eligible to receive care under the law, he or she must be 18 years or older; a resident of Colorado; terminally ill with six months or less to live; acting voluntarily; mentally capable of making medical decisions; and physically able to self-administer and ingest the lethal medications. All of these requirements must be documented by the patient and confirmed by the patient’s physician, who must agree to prescribe the medication.

Procedural Glitch: Because the law allows individual physicians to opt out of prescribing medical-aid-in-dying drugs for any reason and because some hospital systems and hospices have—in a potentially illegal move—decided not to allow their doctors to prescribe the meds, it is sometimes difficult for patients to find physicians willing to assist them.

Step No. 2: Present Oral And Written Requests

An individual must ask his or her physician for access to a medical-aid-in-dying prescription a total of three times. Two of the requests must be oral, in person, and separated by 15 days. The third must be written and comply with the conditions set in the law (signed and dated by the patient; signed by two witnesses who attest that the patient is mentally capable of making medical decisions, acting voluntarily, and not being coerced by anyone).
Procedural Glitch: Although mandatory waiting periods are required in all jurisdictions with medical-aid-in-dying laws, these requirements are especially challenging for patients in small towns or rural areas, where there might not be a doctor willing to participate for 100 miles. For terminally ill patients, making two long road trips to present oral requests can be next to impossible.

Step No. 3: Get A Referral To A Consulting Physician

The law requires that once a patient’s attending physician has received the appropriate requests and determined the patient has a terminal illness with a prognosis of less than six months to live, the doctor must refer the patient to another physician, who must agree with the diagnosis and prognosis as well as confirm that the patient is mentally capable, acting voluntarily, and not being coerced.

Procedural Glitch: Once again, difficulties with finding a willing physician can cause lengthy wait times.

Step No. 4: Fill The Prescription At A Pharmacy

Colorado’s medical-aid-in-dying law doesn’t stipulate which drug a physician must prescribe. There are multiple options, which your doctor should discuss with you. Depending on your insurance coverage (Medicare, Medicaid, and many insurance companies do not cover the drugs), as well as which hospital system your doctor works in, getting the medication can be as simple as filling a script for anything else.

Procedural Glitch: Not every hospital system will allow its on-site pharmacies to fill the prescriptions—HealthOne, for example, doesn’t. Corporate pharmacies, like Walgreens, and grocery-store-based pharmacies often will not fill or do not have the capability to fill the prescriptions. What’s more, Colorado pharmacists are able to opt out of filling the prescription for moral or religious reasons. That leaves doctors and patients in search of places to obtain the drugs once all of the other requirements have been fulfilled.

Step No. 5: Self-Administer The Medications

Although the time and place are mostly up to the patient, if he or she does decide to take the life-ending drugs, he or she must be physically able to do so independent of anyone else. Physical capability is something patients must consider, especially if their conditions are progressing quickly and could ultimately render them incapable of, for example, swallowing the medications.

Procedural Glitch: Depending on the drug that is prescribed and the pharmacy that fills it, patients and/or their families are sometimes put in the position of having to prepare the medication before it can be administered. Breaking open 100 tiny pill capsules and pouring the powder into a liquid can be taxing even under less stressful circumstances.

Step No. 6: Wait For The End

In most cases, medical-aid-in-dying patients fall asleep within minutes of drinking the medication and die within one to three hours. The law encourages doctors to tell their patients to have someone present when they ingest the lethal drugs.

Procedural Glitch: Although most doctors who prescribe the medication do not participate in the death, it is worth asking your physician or your hospice care organization in advance about what to do in the minutes immediately after your loved one has died at home, as 78.6 percent of Coloradans who received prescriptions for life-ending meds under the law and subsequently died (whether they ingested the drugs or not) did in 2017. Someone with the correct credentials will need to pronounce death and fill out the form necessary for a death certificate (cause of death is the underlying terminal illness, not death by suicide) before a funeral home can pick up the body.

Who’s In & Who’s Out?

A short breakdown of metro-area hospitals’ and health systems’ stances.

Completely Out
SCL Health
Centura Health
VA Eastern
Colorado Health Care System
Craig Hospital

In, With Caveats
HealthOne
Boulder Community Health

All In
Denver Health
UCHealth
Kaiser Permanente Colorado

Alternative Endings

An Oregon nonprofit is Colorado’s best aid-in-dying resource.

Although Oregon’s Compassion & Choices is best known here as the organization that helped push Proposition 106 onto Colorado’s November 2016 ballot, the nation’s oldest end-of-life-options nonprofit didn’t abandon the Centennial State after the initiative passed. “First, we help states enact the laws,” says Compassion & Choices’ Kat West, “then we stick around to help with implementation and make sure it’s successful.”

In Colorado, the rollout has been fairly fluid. Perfect? Certainly not. Fortunately, Compassion & Choices has been trying to smooth some of the wrinkles in the system. The biggest help so far might be its website. The nonprofit keeps its online content updated with everything a Coloradan needs to know about the state’s End-of-Life Options Act. Of particular note: the Find Care tool, which lists clinics and health systems that have adopted supportive policies, since finding participating physicians, hospitals, and pharmacies is still challenging. “Patients don’t have the time or energy to figure this out on their own,” West says. “We do it for them.”

Hospice Hurdles

Why some local hospices aren’t as involved in Colorado’s aid-in-dying process as you’d expect.

Despite what you might have heard, hospice is not a place where one goes to be euthanized. “That misconception is out there,” says Nate Lamkin, president of Pathways hospice in Northern Colorado. “We don’t want to perpetuate the thought that we’re in the business of putting people down. That’s not what we do.” That long-standing myth of hospice care is, in part, why many Colorado hospices have declined—potentially in violation of state law—to fully participate in the End-of-Life Options Act.

By and large, the mission of hospice—which is not necessarily a place, but a palliative approach to managing life-limiting illness—has always been to relieve patient suffering and to enhance quality of life without hastening or postponing death, Lamkin explains. “This law kind of goes in opposition to that ethos,” he says. To that end, like many other hospices, Pathways has taken a stance of neutrality: Pathways physicians cannot prescribe the life-ending medication, but the staff will support their patients—by attending deaths, by helping with documentation—who choose the option. “We are not participating by not prescribing,” Lamkin says. “But it is the law of the land, and we fully support those who choose medical aid in dying.”

Pathways is not alone in its abridged participation. Other large Front Range hospice care providers, like the Denver Hospice, have also either taken an arm’s-length stance on the practice or opted out entirely. End-of-life options advocacy nonprofit Compassion & Choices regards this as willful noncompliance, which could leave hospice providers exposed to legal action, especially considering that 92.9 percent of Colorado’s patients who died following the reception of a prescription for aid-in-dying meds in 2017 were using hospice care to ameliorate symptoms and make their deaths as comfortable as possible. But, says Compassion & Choices spokesperson Jessie Koerner, when hospices abstain from fully supporting medical aid in dying, it strips away Coloradans’ rights—rights to which the terminally ill are legally entitled.

 

Filling More Than Just Prescriptions

After spending years at a chain pharmacy, Denverite Dan Scales opened his own shop in Uptown so he could better serve his customers. 5280 spoke with him about being one of the few pharmacists in Colorado meeting the needs of medical-aid-in-dying patients.

5280: Of the roughly 70 medical-aid-in-dying prescriptions written in Colorado in 2017, Scales Pharmacy filled approximately 22 of them. Why so many?
Dan Scales: As a pharmacist, you have no obligation to fill a script that’s against your moral code. So there are many pharmacists who won’t fill the drugs. Also, many chain pharmacies—like Walgreens—don’t mix compounds, which means they can’t make the drug cocktail a lot of physicians prescribe. That leaves independent pharmacies like ours.

You don’t have any objections to the state’s End-of-Life Options Act?
I really believe we kinda drop the ball at the end of life. We do a poor job of allowing people to pass with dignity. I won’t lie, though: After filling the first couple of prescriptions, I did feel like I helped kill that person. I needed a drink. But talking with the families after helps.

You follow up with your patients’ families?
Yes. We ask them to call us after their loved one has passed. We want to know how it went, how the drugs worked, how long it took, was everything peaceful? I’d say about 30 percent call us to offer feedback. It helps us know how to better help the next person. You have to understand, this is not a normal prescription; we talk with these people a lot before we even hand them the drugs. We get to know them.

If you could change one thing about the process, what would it be?
It’s frustrating that there’s not more pharmacy participation in our state. We’re having to mail medications to the Western Slope because people can’t find the services they need.

Final Destination

She couldn’t travel with him this time, but a Lakewood woman supported her husband’s decision to go anyway.

They met online, way back in the fuzzy dial-up days of 1999. J and Susan* weren’t old, exactly, but at 50 and 49, respectively, they had both previously been married. They quickly learned they had a lot in common. They were both introverts. Each had an interest in photography. And they loved to travel, especially to far-flung places, like Antarctica. After about two years of dating, they got married in a courthouse in Denver. For the next 17 years, they saw the world together and were, Susan says, “a really great team.”

The team’s toughest test began in fall 2017. Susan says she should’ve known something was wrong when she asked J if he wanted to go on an Asia-Pacific cruise and he balked. Upon reflection, Susan realized J likely hadn’t been feeling well. “That hesitation was a clue,” she says. The diagnosis, which came in January 2018, was a devastating one: stage 3-plus esophageal cancer. It was, as Susan puts it, “a cancer with no happy ending.”

It would also be, Susan knew, a terribly difficult situation for J to manage. He had never been able to stand not being healthy; she was certain he wouldn’t tolerate being truly sick. And esophageal cancer makes one very, very sick. The tumors make swallowing food difficult, if not impossible. As a result, some sufferers lose weight at an uncontrollable clip. They can also experience chest pain and nasty bouts of acid reflux. J knew he was dying—and that he didn’t want to go on living if he could no longer shower or go to the bathroom alone or be reasonably mobile. He broached the topic of medical aid in dying with Susan in February. “Honestly, I had already thought about it,” she says, “so I told him I thought it was a great idea.”

As a Kaiser Permanente Colorado patient, J had access to—and full coverage for—the life-ending drugs. The process, Susan says, was lengthy but seamless. J got a prescription for secobarbital and pre-dose meds; they arrived by courier to their house in April. Having the drugs in hand gave J some peace. He wasn’t quite ready, but he knew he was in control of his own death. He would know it was time when he began to feel like his throat would be too tight to swallow the drugs—or when he became unable to care for himself.

That time came in late June. He was weakening, and he knew it. Having decided on a date, J had one last steak dinner with his family on the night before his death. “He was actually able to get a few bites down,” Susan says. “He was also able to have a nice, not-too-teary goodbye with his stepchildren. It was wonderful.”

Although she was immeasurably sad when she woke the next day, Susan says seeing the relief on J’s face that morning reinforced for her why medical-aid-in-dying laws are so important. She knew it was unequivocally the right decision for him—a solo trip into the unknown, but he was ready for it. At noon on June 25, J sat down on the couch and drank the secobarbital mixed with orange juice. “Then he hugged me,” Susan says, “and he said, ‘It’s working’ and fell asleep one minute later. It was really perfect. He did not suffer. It was all just like he wanted it.”
*Names have been altered to protect the family’s privacy.

Drug Stories

A numerical look at medical-aid-in-dying meds.

$3,000 to $5,000: Cost for a lethal dose of Seconal (secobarbital), one of the drugs doctors can prescribe. The price for the same amount of medication was less than $200 in 2009; the drugmaker has increased the cost dramatically since then. Many insurance companies will not cover the life-ending medication.

4: Drugs that pharmacists compound to make a lower-priced alternative to Seconal. The mixture of diazepam, morphine, digoxin, and propranolol, which is reportedly just as effective as Seconal, costs closer to $500 (pre-dose medications included).

5: Ounces of solution (drugs in powder form that are dissolved in a liquid) a medical-aid-in-dying patient must ingest within about five to 10 minutes.

2: Pre-dose medications—haloperidol to calm nerves and decrease nausea and metoclopramide to act as an anti-vomiting agent—patients usually take about an hour before ingesting the fatal drugs.

10 to 20: Minutes it typically takes after the meds are ingested for a patient to fall asleep; death generally follows within one to three hours.

Uncomfortable Silence

Just because roughly 65 percent of voters approved Colorado’s End-of-Life Options Act in 2016 doesn’t mean Centennial Staters are completely at ease with the idea of the big sleep. Just ask these health care professionals and death-industry veterans.

“In a perfect world, I think one should be with family at the end. There are benefits of sitting with a dying person. Compassion means ‘to suffer with.’ Sometimes that suffering isn’t physical; it’s emotional. A lot of healing can happen at the end.”
—Dr. Michelle Stanford, pediatrician, Centennial

“If people’s existential needs and pain are addressed—things they need to talk to their doctors and family about—natural death can be a beautiful thing. It doesn’t have to be scary. In American society, we don’t talk about death and dying. It’s because we fear it. We are afraid of the anticipated pain, of having to be cared for. In other cultures, there is more family support and there is no thought of being a burden. This is a part of life, part of what should naturally happen.”
—Dr. Thomas Perille, internal medicine, Denver

“Doctors don’t die like our patients do. We restrict health care at the end of our lives. My colleagues don’t do the intensive care unit and prolonged death. We, as doctors, are not doing a good job helping patients with this part of their lives. Dying in a hospital is the worst thing ever. There is an amazing difference dying at home around friends and family.”
—Dr. Cory Carroll, family practice physician, Fort Collins

“Most people are unprepared for what needs to happen when a death occurs. Those who choose to lean toward the pain with meaningful ritual or ceremony are the ones I see months later who are moving through this process toward healing. The ones who think that grief is something that occurs between our ears are the ones who struggle the most. Sadly, we live in a society and a culture where grieving and the authentic expression of emotion is sometimes looked down upon.”
—John Horan, president and CEO of Horan & McConaty Funeral Service, Denver

“We only die once, so let’s do it right. When death happens, whether it’s our own or a loved one or someone we know, it’s not just their death that we’re acknowledging, but it’s life that we are all acknowledging. I think it’s helpful and healthy to honor death because in doing so, we are helping to celebrate life.”
—Brian Henderson, funeral celebrant, Denver

63 Percentage of Americans, 18 years or older, who die in hospitals and other institutional settings, like long-term care facilities and hospices. In 1949, however, statistics show that only 49.5 percent of deaths occurred in institutions. Because death in the home has become more uncommon, experts say, few Americans have direct experience with the dying process and that separation has, in part, led us to fear, misunderstand, and essentially ignore the end of life as an important stage of life itself.

Sources: Centers for Disease Control and Prevention; American Psychological Association

Another Shoulder To Lean On

Front Range support groups that can make bereavement more bearable. —Will Jarvis

Healthy Self. Healthy Life.

This two-therapist firm offers support sessions specifically for those in their 20s and 30s as well as an anticipatory grief gathering called Facing The Long Road. This latter group—which focuses on helping 19- to 36-year-olds manage the despair and caregiving duties that can come with having a parent with a terminal illness—zeroes in on a demographic whose busy lives often get in the way of their well-being. Cost: $35/session

The Compassionate Friends

The premise behind the Compassionate Friends, a 49-year-old international organization, is that only other bereaved parents can understand the pain of losing a child. Today, the group gathers parents, grandparents, and family members and encourages peer-to-peer healing in monthly sessions. Six Front Range chapters provide safe places for those struggling with loss to share coping mechanisms and ways to find a new normal.
Cost: Free

Judi’s House

Childhood traumas, such as losing a sibling or a close relative, can be especially challenging to overcome. That’s why this nonprofit, housed two blocks from City Park, has trained clinicians on staff to help both children and families dealing with grief. Its 10-week structured programs put kids in groups of five to 10 other children, and the organization provides a free dinner before each weekly meeting—giving anguished families one less thing to worry about.
Cost: Free

What Remains

While there are myriad ways to die, in Colorado there are only a few methods by which your body can (legally) be disposed: entombment, burial, cremation, or removal from the state. We spoke with Centennial State funeral homes and cemeteries to understand the options. Just remember: Colorado law says the written wishes of the deceased must be followed, so discuss what you want with your family ahead of time so they aren’t surprised.

Burial

Typical cost: From about $5,000 for a casket and full funeral service, plus about $5,000 for cemetery fees (plot, headstone, etc.)
What you need to know: In Colorado, a funeral home cannot move forward with a burial (or cremation or transportation across state lines) until a death certificate is on file with the county and state, which normally takes a few days. The funeral home will need information like social security numbers and the deceased’s mother’s maiden name to begin the process. Further, state law requires that if a body is not going to be buried or cremated within 24 hours, it must be either embalmed (using chemicals as a preservative) or refrigerated, so make sure your loved ones know what you prefer. Your family can opt to have your body prepared at a funeral home and then brought home for a viewing or service, though. Finally, federal law mandates that your family be given pricing details about caskets, cemetery fees, and the like before they make a decision, so they are prepared for the costs.

Cremation

Typical cost: From about $600 for transportation, refrigeration, and cremation; additional fees for urns, memorials, and/or funeral services
What you need to know: Choosing cremation does not preclude having a funeral; many people opt to have funeral services and then have the body cremated. (In this case, you’ll still need a casket, but you can rent one instead of purchasing it.) Once you’ve gone the ashes-to-ashes route, you can’t be scattered willy-nilly on federal land, in part because straight cremains are not healthy for plants. For example, your family will need to apply for a free permit—which stipulates how and where ashes can be spread—if you’d like to have your cremains placed inside Rocky Mountain National Park. The most popular national park in Colorado got more than 180 such requests last year.

Green Burial

Typical cost: From about $1,500
What you need to know: Only one Colorado cemetery (Crestone Cemetery) and handful of funeral homes (like Fort Collins’ Goes Funeral Care & Crematory) have applied for and been certified by the Green Burial Council. That doesn’t mean there aren’t various shades of “green” burial available throughout Colorado, though, at places such as Littleton’s Seven Stones Chatfield—Botanical Garden Cemetery and Lafayette’s the Natural Funeral. Among the greener ways to go: avoid embalming (so the harmful chemicals don’t seep into the ground upon decomposition); opt for a simple shroud or biodegradable casket; have your grave be dug by hand, instead of with machinery, which comes with a carbon footprint; or select a cemetery or cremation garden that uses environmentally friendlier plants for landscaping (for example, Seven Stones uses rhizomatous tall fescue for its meadow, which requires less water to maintain).

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Gone but never forgotten:

How to comfort a child whose sibling has died

Children not only lose their sibling, their parents can also disappear into profound grief.

By

In 1971, when I was four years old, my brother died of a congenital heart condition. Writing about this experience has prompted more responses than anything else I’ve ever written or spoken about. Untold and unheard stories appear in comments sections, strangers tell me cross-culturally consistent tales in the soft corners of conference rooms and speak about the siblings they’ve lost and how present the memories of them still are in their minds and hearts.

These stories all have one thing in common: a sense of being forgotten, left out of conversations about the dead, of rituals of mourning, and excluded from the respectful circle that is drawn around the bereaved.

One of the reasons stories of sibling loss spark so much interest is that the research literature in the area is so sparse. We still know so little about what children who’ve lived through this kind of death need as they mourn.

While the quantitative literature has explored the profound negative lifelong physical and psychological health impacts of this kind of bereavement, so many social and familial factors contribute to these impairments that it’s hard to imagine how the figures would look if families and communities were better equipped to respond to grieving children.

Children don’t forget about their lost siblings.

Part of the picture of sibling loss is that it is compounded. Children not only lose their sibling, but also the parents they knew disappear at least for a time into profound grief. This can lead to the loss of the child’s position as they try to cope with the higher expectations on their shoulders.

Adding to this complexity, the small body of qualitative research into children’s experience of losing a sibling highlights a raft of social failures. Silence about the mechanics of death, family isolation and the persistent myth across many cultures that children bounce back from grief more easily than adults are some of the most salient.

In this literature, grieving children tell us about what they wanted and didn’t get, and reading it provides some guidance on how to support bereaved siblings for anyone willing to listen. The following short list of suggestions is drawn directly from this qualitative literature.

Make genuine room for children in discussions

The evidence is very strong that grieving children of all ages need to be involved at every level in discussions about death and in the planning and performing of death rituals.

But, if we’re going to make room for them, we have to get across our own death material and be prepared to answer painful, graphic and profound existential questions about death and dying, such as:

Can you show me what a decomposing body looks like? Why are we going to burn my sister in her coffin? When will you die? And how? When will I die? Why do some people die while others keep on living? Why my brother and not someone else?

To tell the truths about death to children and to really include them in family and community meaning-making is to expose our culture’s myths of death and dying, whatever they are, to profound criticism and scrutiny. That is what we are being asked to do.

Accept that children’s grief is no different to ours

Sibling bereavement researcher Betty Davies’s participants spoke to her again and again about their need for the lifelong persistence of their grief to be understood.

You never stop grieving the loss of a sibling.

They spoke of wanting the adults in their lives to accept that their grief is no different to ours, that they are never too young to feel loss and that just because they are children doesn’t make them any more resilient than grown-ups.

They are asking us to challenge the almost universal myth that children forget, and instead to stand with them in their bereavement rather than setting them apart to take solace in their imagined innocence.

Honour continuing bonds with the dead

Our siblings play a significant role in our development, and this helps to explain some of the reasons why we are so deeply impacted when a sibling dies.

We develop our self in relationship to others, and our siblings are a kind of mirror. When they die, we lose a relationship that provided an essential reflection of who we are and who we might become. Children whose sibling has died need to have a place for their ongoing thoughts, feelings and connection to the dead throughout their lives.

For children who never knew their dead sibling, this affirmation of their connection to the lost one has a different quality but is no less important. While for these children the links are not made up of memories of a relationship, they are important symbolic representations of the self through the lens of the grief that came before.

For both groups of children, those who knew their dead sibling and those who did not, stories about the lost child help to make sense of who they are and of their place in the world.

We can all play a part in making space for children whose sibling has died to bear the unbearable – by offering solace in the form of genuine inclusion and by breaking the silence that can turn pain into suffering.

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