Why teens need to understand care plans for dying parents

By Lisa Rapaport

[W]hen children lose a parent during adolescence, their mental health as young adults may depend on how comfortable they were with the treatment and support provided at the end of their parents’ lives, a recent study suggests.

To understand the lasting psychological impact of the death of a parent during adolescence, researchers surveyed young adults who had lost a parent to cancer six to nine years earlier, when they were 13 to 16 years old.

Overall, 105 of the 593 young adults (18%) said they had little or no trust in the care provided during the final week of the parent’s life.

Compared to the participants who were satisfied with the final week of care, those who were unhappy were more than twice as likely to suffer from mental health issues like depression, anxiety and eating disorders, researchers report in the Journal of Clinical Oncology, online August 8.

“We already knew that children who have lost a parent are at risk for long-term psychological challenges including depression, risk of suicide, and risk of self-injury,” said Dr. Jennifer Mack, a researcher at Harvard Medical School and Dana-Farber/Boston Children’s Cancer and Blood Disorders Center.

“However, a link to trust in the medical providers of the parent was not previously understood,” Mack, who wasn’t involved in the study, said by email. “This is important because it offers a potential path forward to greater resilience and healing after a parent’s death for young people who experience this type of profound loss.”

The current study focuses not on how teens felt when their parent was dying, or immediately afterwards, noted lead study author Kim Beernaert of the End-of-Life Research Group at Vrije University Brussels and Ghent University.

Instead, it looks at how they feel after several years have passed, Beernaert said by email.

Young people who had little or no trust in the care parents received at the end of life were at least twice as likely to report still feeling bitter toward health providers for failing to make the correct initial diagnosis, stopping or never starting treatment, or not doing everything possible for the parent, the study found.

The mistrustful young adults were also more likely to still want more information about the parent’s disease, treatment decisions, and death.

The study wasn’t a controlled experiment designed to prove whether or how teens’ experiences during a dying parents’ final days influence mental health later in life.

Another limitation is the potential for factors not examined in the study to impact mental health for these young adults, as well as the potential for teens with psychological problems to be less trustful of medical providers than adolescents without mental health issues, the researchers note.

Still, the results highlight the importance of providing age-appropriate support and grief counseling to children and teens during a parents’ final weeks or months of life, said Dr. Amos Bailey, a palliative care researcher at University of Colorado Medicine in Aurora.

Resources tailored to young people are often lacking outside pediatric hospitals, Bailey, who wasn’t involved in the study, said by email.

“What is at stake for bereaved families is the potential for lifelong mental health problems that are probably more socially significant for a teenager (who) will live with this grief for 60 or more years as opposed to a widow who may outlive her husband by 3-5 years,” Bailey said.

Complete Article HERE!

You’re Sorry for Someone’s Loss. But How Do You Say It?

When you express condolences, share a memory of the person who died with the bereaved, experts said.

By

[E]xpressing condolences to a grieving friend or loved one can make the most articulate of us feel tongue-tied.

It often feels like an obstacle course of etiquette and taste: What should you say? Should you send a card or meet in person? Is an email or Facebook message acceptable? The answers to those questions often depend on your relationship to the grieving party, but here are some tips that are applicable in any situation.

Digital Condolences

Experts were divided about the use of social media to express sympathies.

In the case of someone you know mainly as a friend on Facebook, sending a Facebook message or an email could be “right on,” Sheila K. Collins, the author of “Warrior Mother: Fierce Love, Unbearable Loss and Rituals that Heal,” said in an email, adding: “Like the birthday wishes — short and to the point — ‘My thoughts are with you in this difficult time.’ ‘Sorry to hear of your loss.’ ”

April Masini, who writes about relationships and etiquette for her website Ask April, said in an email that offering sympathy via social media can fall short. Many people post comments primarily to be seen publicly expressing condolences, she said, and comforting the bereaved becomes a secondary goal.

If you do leave a message on a grieving person’s Facebook profile, be sure to follow up with a phone call, or maybe a note or card in the mail, experts said. You want your condolences to be personal and direct, so taking time to treat the grieving party to coffee or to send them a personal note means more than a quick “I’m sorry for your loss” via Facebook message or text.

Also, only offer condolences on social media if the person has posted the death and personally publicized it, said Michelle P. Maidenberg, the president and clinical director of Westchester Group Works, a group therapy center in Harrison, N.Y. The last thing you want is to force your grieving friend into an unwanted public conversation about the death.

Experts differed on the use of emails, but Ms. Maidenberg recommended against them.

“It puts the burden of responsibility on the other person to respond, and if they don’t have the time or wherewithal to answer, they could be left feeling regretful and guilty,” she said.

How to Get Started

As soon as you learn your friend has lost someone, send a note or condolence card. It can be difficult, but put yourself in your friend’s shoes and consider how helpful it would be to have someone to lean on during a tough time. Ms. Masini acknowledged that writing a condolence card can be a challenge, but she warned against procrastinating.

“Schedule some quiet time to compose a heartfelt message,” she wrote. “Chances are the person you’re writing to is going to value this card way more than you realize and will reread it several times, especially if you knew the person who died.”

You can start with “I’m sorry for your loss” or “My thoughts and prayers are with you.”

Draw on Your Memories

If you knew the person who died, talk about how what you loved most about that person.

“Your written memories are going to be like Christmas ornaments on a tree,” Ms. Masini wrote. “Help the bereaved grieve and remember fondly the one they’ve lost with your detailed anecdotes, memories and compliments.”

Ms. Collins said sharing something positive is a “very powerful action” that reminds the bereaved of how others interacted with the person who died.

“You want the person to get the message that you care, that they are not alone in their grief,” she said in an email. “You want to offer support, comfort and encouragement.”

Offer Concrete Ways to Help

“Making general offers of help such as ‘Let me know if I can be of help’ will go nowhere, so be specific when you offer your help,” Mr. Alpert said in an email.

Similarly, “I’m here if you want to talk” or “I’m around if you need anything” puts the onus of action onto the grieving party, who’s already struggling emotionally and may not have the energy to reach out. Instead, be proactive and spend that energy so they don’t have to.

He suggested: “I’d like to bring you dinner on Tuesday evening” or “I’m going to the grocery store and would like to bring you food. What can I get you?” The goal is to be helpful and offer comfort during a difficult time.

What Not to Say

Don’t make it about you. Avoid referring to your own experiences with the death of a loved one, Ms. Masini wrote, adding that those references can be saved for a future conversation.

“For now, comparing the loss of your beloved pet to the loss of your uncle’s brother diminishes the death at hand,” she wrote. Similarly, don’t try to empathize so much with your friend that they wind up feeling like they have to console you.

Avoid clichés, and do not use expressions such as “It happened for the best” or “I can’t imagine what you’re going through.”

If you are stumped about what to write or say, look for inspiration in sympathy cards or search online for sample condolence messages.

Just Being There Matters

Linda Fite of Kerhonkson, N.Y., emphasized the importance of reaching out. Don’t avoid sending a note because you are unsure of what to write, she said in a Facebook posting.

“Honestly, when my mother died, I was so touched and lifted up by ANY and all the expressions of sympathy,” she wrote.

Ms. Collins, who had a son die of AIDS at 31 and whose daughter died of breast cancer at 42, emphasized the importance of reaching out.

“It is often difficult to know what to do in situations like this, and everyone feels a bit unnerved and intimidated,” she wrote.

She said she was “deeply comforted” by cards, phone calls and visits, adding: “As supporters we always think, ‘I don’t want to bother them now.’ The truth is that grieving people need bothering so they don’t spend all their time grieving.”

Complete Article HERE!

Designing for death online

“Facebook is not designed with death in mind and that’s a problem. It was designed for purposes that do not scale to the level at which it is now used in our world.”

 

[I]f you’ve ever used social media after the death of a loved one, you might understand the problems that Stacey Pitsillides is describing. As a university lecturer in design, Stacey is researching what happens to our online lives when we die and how grieving people use social media after the death of a loved one.

“Unfortunately, you have these uncomfortable encounters with something that hasn’t been well-designed,” she says, explaining how people experience social media after a bereavement. “The kind of design choices that make sense to Facebook or Twitter or LinkedIn as a digital platform, don’t make sense to someone who is in bereavement.”

For example, Facebook has an ‘On This Day’ function, which shows you an old photo or status update, with the caption: “We care about what you share here. We thought you’d like to look back on this post from five years ago.” It’s a lovely reminder if it’s a picture of you and your friends at the beach – not so lovely if one of those friends has since died and seeing that photo brings back all your grief and pain.

Lucy Herd, a mother who lost her son when he was just two years old, described the impact Facebook can have on someone who is grieving. “Yesterday Facebook showed me an ‘On This Day’ reminder of a video I’d posted of Jack when he first learned to walk. Some days you think you’re okay, but it knocked me for six.”

“The ‘On This Day’ feature really shows that Facebook hasn’t learnt their lesson. They haven’t brought those principles of designing for death into their actual user experience,” says Stacey.

It seems that the designers and developers behind social media giants like Facebook, Twitter and Instagram are lagging behind their users, who are routinely re-purposing social networks to act as memorials or grief support networks.

“These large social media platforms have a community, and that’s why a lot of the grief happens there,” she explains. “Those sites become ad-hoc spaces for memorial. They allow people to understand the dead in a new way and to talk to the dead through their profile. Those spaces, in some ways, are helpful to people.

“There is memorialization in all different environments and platforms, such as in online games and on social media. It shows the creativity of people’s own instinctive approach to bereavement.”

With the general public apparently one step ahead when it comes to using social media spaces for grief, Stacey, based at the University of Greenwich in the UK, is keen to explore how death can be factored into the design of new digital environments where people connect.

“The question is, not just why tech companies are not catching up, but how can we design for death, as a principle, in these tech environments.

“When you build something like that, when you want a community to grow, you need to consider not only the positive, happy moments in people’s lives, but the sadness too. Things need to be considered in equal measure – celebrating an anniversary, or remembering a death.”

These aren’t just abstract ideas or challenges for web developers to tackle. Issues about digital legacy and how we deal with grief online will begin to affect more people as living life online becomes more popular with each generation.

Stacey describes how a family from the Netherlands had to tackle some these issues when the social media site they used for a loved one’s memorial, called Hyves, began to disappear.

“As Facebook took over and as Hyves went down, people started leaving in droves,” she said. “It was a conundrum. What should they do with their loved one’s memorial as the community disappears?

“The family was wondering, do we move it onto Facebook with the community, onto a platform that she never existed on? Do we let the memorial die with Hyves and leave it to become derelict like a Victorian graveyard? Or do we print it off and archive it, so to speak?

“These are issues that will hit us, when Facebook and Twitter are inevitably taken over.”

As digital media becomes an increasing part of people’s daily lives, these questions will become more pressing. For now, it’s up to the developers and designers behind these digital spaces to realize that death and grief will not stay offline and begin designing with death in mind.

Complete Article HERE!

Funeral celebrants offer customized services without liturgy, dogma or traditional rituals

Until fairly recently, priests, ministers and rabbis presided over rites for the dead. But fewer Americans are attending a church or synagogue. Enter funeral celebrants.

By Kevyn Burger

[W]hile he was buttoning his crisp white shirt and tying his tie, Ryan Raffray started crying.

He’d been up late the night before, laboring over his eulogy for baby Dylan, found unresponsive in his crib, a SIDS death.

“How do you tell the story of a beloved child who was with us only six months?” he said, as he stood behind the lectern, trying to keep his voice from catching.

Raffray delivered his carefully composed tribute not in a church or funeral chapel, but in a Plymouth hotel conference room.

His audience was not a grieving family but a group of funeral professionals.

And the baby? He was fictitious. But the details Raffray gave about Dylan’s short life were so poignant that the others in the room passed around a box of Kleenex.

Writing and delivering the eulogy was Raffray’s final assignment in a course to become a certified funeral celebrant. He joined a dozen participants who spent three days and $999 attending a workshop on how to craft a final farewell for families that don’t want a funeral with traditional trappings.

Until fairly recently, priests, ministers and rabbis presided over rites for the dead. But fewer Americans are attending a church or synagogue. Every seven years, the Pew Research Center releases a comprehensive Religious Landscape Study. In 2008, 16 percent of those polled claimed no religious affiliation. By 2015, that number had grown to 23 percent, with the drop noted across denominations, genders, generations and racial groups.

That leaves nonreligious families without a person (such as a clergy member) or place (a house of worship) to turn to when they experience loss.

Increasingly, funeral celebrants are stepping in to create secular ceremonies without liturgy, dogma or traditional rituals. What they offer instead is a customized service designed to suit the needs of the grieving.

“Funerals are changing and families need new options and ceremonies that speak to them,” said Glenda Stansbury, co-founder of the InSight Institute Certified Celebrant program, based in Oklahoma City.

“Churches take care of churchgoers,” Stansbury said. “People on the fringes think no one can or will meet their needs. We can be there for the ones who say they’re spiritual but not religious or who clearly state they don’t want to be preached at.”

A meaningful funeral can be a healing first step for families as they begin to mourn. But funeral professionals see more people forgoing funerals altogether because they can’t find a service that will allow country music, quotes from Harry Potter or unvarnished storytelling.

“We know that people need that gathering to share their loss and get support from their community. Without funerals, we’re setting up a nation of people who are not dealing with grief, and unresolved grief is at the root of a lot of persistent problems,” Stansbury said.

Lisa Jones, a community activist from Milwaukee, took part in the celebrant training because she feels “called” to serve this unmet need in her community.

“The black church is strong, but a lot of hurting folks are unchurched or de-churched,” she said. “I just went to a church funeral that used the traditional model, but it didn’t suit the family and they went away feeling angry. We need to find new ways to respond to trauma.”

Training for a tribute

At the celebrant training in Plymouth, students learned how to organize funerals, celebrations of life, graveside services and the scattering of ashes. The course covered incorporating music, readings and video tributes and offered guidance on how to price, position and publicize work as a funeral celebrant. (Most charge $300 to $400.)

The centerpiece of the celebrant’s work is the life tribute, the unique story that the celebrant delivers to give mourners a sense of the life lived and lost.

Celebrants learned how to set up a family meeting to gather a mosaic of memories and fashion them into a story. Gathering those memories is as important as delivering the tribute.

“You become the ambassador for that person’s legacy,” Stansbury told her trainees. “When everyone is hearing the story together it becomes a sacred time that is healing.”

A licensed funeral director and certified celebrant, Stansbury estimates she’s delivered 500 life tributes in her 17-year career. The work is growing more challenging. In recent years, she’s been the celebrant for a greater number of overdoses and violent deaths.

Many funeral directors keep a list of pastors who may be willing to officiate at a service for someone they don’t know (“I never got a chance to meet John … ”). But Stansbury has found them reluctant to officiate at troubling deaths.

“The rent-a-ministers take a pass on the hard cases,” she said. “Families experiencing a sudden, tragic loss need us the most. We tell them, ‘We won’t sugarcoat your loss.’ Sometimes we walk into a family’s dysfunction and we have to help them grieve the relationship they didn’t have. We say, ‘What do you need to say goodbye?’ ”

Authentic vs. anonymous

When dealing with families that lack religious affiliations, funeral directors sometimes step into the breach.

“We’ve been functioning as celebrants, but we never had the training,” said Kelly Woltjer, who owns and operates three funeral homes in northwestern Minnesota with her parents. “We meet the ones who express that they are Christian but don’t go to church and are looking for someone to lead the service. We need help learning how to give them something different.”

Woltjer said many families don’t want mentions of salvation and eternal life, but seek comfort in what’s familiar. “A lot of them will ask for the Lord’s Prayer or the 23rd Psalm and ‘Amazing Grace,’ ” she said.

Some taking celebrant training are licensed funeral directors, like Woltjer, who are formally schooled in embalming and mortuary science. Others hope to work as independent celebrants, who are called in by funeral directors to fill the gap.

Jessica Moujouros works with young people who have experienced loss. That’s what inspired the program director at the Children’s Grief Connection in Willow River, Minn., to undergo the training.

“We see kids who come to our family grief camp because they didn’t have a good funeral experience. Their pain was trivialized. We want to give them a better ceremony that would help them on that stage of their grief journey.”

Moujouros has seen the value of the celebrant option in her own life.

“When my grandfather died last year, we had a celebrant who talked to his last surviving sister and we learned things about him that we never knew. The service and the story was wonderful,” she said. “When my other grandfather died, the town priest pronounced his name wrong.”

Houston-based SCI, the nation’s largest chain of funeral homes, offers celebrants as one of its funeral options. But others in the industry have been slow to embrace the concept.

“I was talking to a small-town funeral director and he said, ‘We would never offer a celebrant.’ He said he wouldn’t risk offending the clergy in his community. I was taken aback by that. He missed an opportunity to serve,” said Prof. Michael LuBrant, director of the Program of Mortuary Science at the University of Minnesota.

While LuBrant called the funeral industry “notoriously resistant to change,” he’s seeing a major shift in the kind of the death rituals that families seek, with tunes from the radio instead of the hymnal or a Champagne toast as a service concludes.

Stansbury agrees.

“Millennials are the least religiously affiliated generation in history and they’re getting ready to bury their baby boomer parents,” she said. “They will demand touching, authentic ceremonies that speak to them and their values. We need to make sure they understand they can have that.”

Complete Article HERE!

The Christian case for assisted dying

By

[B]efore and after photos of Frenchwoman Chantal Sebire motivated me, in 2009, to become public in advocating, as a Christian, for the terminally ill to be shown Christian empathy, love and compassion, and to be given an additional choice when even the best palliative care cannot ease their futile suffering.

Chantal, who had an aggressive nasal cancer, that had left her blind, her jaw disintegrating and suffering “atrocious pain”, was pleading for assistance to die.

Since then my views have been reinforced by Christians far more theologically qualified than I am, and many examples of futile suffering sent to me by Christians who have watched loved ones dying inhumanely, asking how can this be compatible with Jesus’ message of love.

Catholic theologian Hans Kung, in his book A Dignified Dying states:

As a Christian and a theologian I am convinced that the all-merciful God, who has given men and women freedom and responsibility for their lives, has also left to dying people the responsibility for making a conscientious decision about the manner and time of their deaths. This is a responsibility which neither the state nor the church, neither a theologian nor a doctor, can take away.

Anglican Archbishop Emeritus Desmond Tutu has written:

I know that we will all die and that death is a part of life. Terminally ill people have control over their lives, so why should they be refused control over their deaths? Why are so many instead forced to endure terrible pain and suffering against their wishes?

Regardless of what you might choose for yourself, why should you deny others the right to make this choice? For those suffering unbearably and coming to the end of their lives, merely knowing that an assisted death is open to them can provide immeasurable comfort.

In refusing dying people the right to die with dignity, we fail to demonstrate the compassion that lies at the heart of Christian values. I pray that politicians, lawmakers and religious leaders have the courage to support the choices terminally ill citizens make in departing Mother Earth. The time to act is now.

Complete Article HERE!

5 Things The Death Of My Best Friend Taught Me About Life

By Megan Harris

[O]n July 6, 2015, I awoke to a phone call alerting me that my best friend of 17 years had been killed.  

The details were spotty: there had been a boating accident roughly 36 hours prior on a lake in North Carolina. Jenna had been killed along with her uncle. Her cousin and boyfriend, also on the boat, were in the hospital.

As I tried to make sense of what happened, I felt as though I was having an out-of-body experience. The entire time I sat in a comatose state of disbelief, my eyes glued to a text message she had sent me less than four hours before the accident. My brain refused to believe that someone I had just spoken to could be gone. I called her phone over and over again, hoping she would answer and explain that the whole thing had been an elaborate misunderstanding; but every time her voicemail picked up, the automated response alerted me that the mailbox was full.

The weeks that followed were a blur. Planning her funeral, comforting her grieving family and friends, packing up her house, all of the terrible side effects of tragedy compounded by the fact that she was four months shy of her 30th birthday.

And just like that, I entered into a completely new chapter: Life After Death.

Here’s what I’ve learned.

Every cliché you’ve ever heard is true

Life is precious. Everyday is a gift. Live each day like your last. Before losing my best friend, phrases like this seemed reduced to posters hanging on the walls of a guidance counselor’s office or accompanying a wistful Instagram post of a woman staring off into the sunset. Now, they read like totems from people who walked a similar path before me.

Losing someone, especially so suddenly, is a sobering reminder that the time we have on this planet really is so finite. All of the time we spend frustrated sitting in traffic, obsessing over how we look or what we’ll wear, arguing with a partner over who should unload the dishwasher, things that take up so much real estate in our minds cease to be important the moment our life is over. With that new knowledge, knowing that today could be our last, do we really want to spend it pissed off?

Now, I chose to live by a new rule: Life is short, order dessert.

You are stronger than you think

If you would have asked me a few years ago what my thoughts on death were, you would have been met with stunning anxiety. I spent so much of my time thinking about what I would do if I were to experience loss. I obsessed over how I would feel if I were to lose a loved one. I comforted grieving friends with praise, proclaiming them to be so strong, so resilient — all the while imagining myself in the same situation with different results. Surely I would be a withering mess, I told myself. I’d probably never stop crying or be able to smile again.

Then, one day, I was walking in their shoes and, believe it or not, I was putting one foot in front of the other. Sure, it was miserable and challenging, but I was doing it. I was still here, breathing and living and moving. To borrow a line from Bob Marley, “You never know how strong you are, until being strong is your only choice.” Another cliché come true.

Grief, like life, is a rollercoaster

If death teaches us anything, it’s that life is a constant of ups and downs. With every momentously tragic event, there are also incredible highs: birthdays, anniversaries, first love, first heartbreak, job promotions and layoffs. All of the ebbs and flows of life play out similar to the phases of grief.

Some days there are intense lows where the very act of getting out of bed seems impossible. Other days there are glimpses of happiness found in revisiting a memory or the first time you laugh, really laugh, after believing you may never feel joy again. The amount of time we spend on this rollercoaster differs for everyone; for some, we never disembark. But, as we grow to learn in time, the peaks and valleys become less severe and we are able to anticipate when the next heart-stopping plunge is around the corner.

Your pain can be used to help others

I am always so amazed by people who are able to turn their tragedy into triumph. We see stories everyday of profound individuals who have been to the edge and come back better, stronger, believing their divine purpose is to use their suffering to help others. I am not one of those people. I did not open a charity or become a motivational speaker.

For a long time, all I did was cry and move about my days in a zombie-like trance. Then, one day, an acquaintance of mine posted on Facebook about losing their friend in a freak accident. Immediately, I felt compelled to reach out to them to offer my condolences and share resources (books, a local therapist). I hoped I could provide them with some comfort, albeit minimal. I didn’t run a 5k or raise money, but the very act of letting someone know they weren’t alone made me feel as though I could make a difference, however small.

You’ll never be the same — but you will be okay

While you never fully “get over” loss, in time, you do learn how to live with it. For me, grief feels like living with an injury that never quite properly healed. Your body learns to adapt and rebuild and, over time, scar tissue covers the spot where the injury occurred.

You learn to live with this “new normal.” A giant, ugly scar that reminds you of the beautiful person you once knew. Sometimes it hurts and other times it just hurts to look at; but it’s always there — even if years later others can’t see it or even remember you have it. Life does go on after tragedy. It doesn’t go back to the way it was, but it does move forward. You keep moving forward — and that’s okay.

Complete Article HERE!