"Disenfranchised Grief" -- Losing a Friend Can Be as Devastating as Losing a Family Member

The so-called hierarchy of grief, a scale used to determine who is considered a more legitimate mourner than others, puts family members at the top. For this reason, the death of a close friend can feel shunted to the periphery and has been described as a disenfranchised grief...Friends are psychological kin, that is, you may even have a stronger bond with friends than people you are related to by birth or marriage. So when a friend dies, the psychological and emotional stress can be as bad as the death of kin.

The death of a friend can be as traumatic as losing a family member

"Pediatric Palliative Transport" Letting Dying Children Go Home

"[P]ediatric palliative transport” [is a] a rare but growing practice that aims to give families choice, control and comfort at the end of life.

Palliative transport lets families move critically ill children from the hospital intensive care unit to their home or hospice, with the expectation they will die within minutes to days after removing life support.


A collection of photos of Anthony Gabriel Brescia-Connell, who was 16 when he was transported from Boston Children’s Hospital to his home in Medford, Mass., where he died on March 3, 2011, surrounded by his family and beloved stuffed animals. (Photo by Kayana Szymczak for Kaiser Health News/Photo by Kayana Szymczak for Kaiser Health News)
It means “having parents go through the hardest thing they’ll ever know — in the way they want to do it,” Nelson said. Boston Children’s has sent 19 children to home or hospice through palliative transport since 2007, she said.

These final journeys — also offered by the Mayo Clinic, Children’s Hospital of Philadelphia and Kentucky Children’s Hospital — can involve elaborate planning, delicate transfers and even long helicopter rides. In some cases, families took a child far from home for a last-ditch effort to save their lives.

At the Mayo Clinic, palliative transport has helped culturally diverse families carry out end-of-life wishes for their dying children. In one case, a newborn girl rode 400 miles by ambulance to return to her Amish community, where she was extubated and died in her parents’ arms, in the company of her 11 siblings. In another, an 8-month-old Native American girl traveled 600 miles by air and ground ambulance to her rural tribal reservation, where she could participate in end-of-life rituals that could not be done in the hospital.

A final comfort for dying children: ‘Palliative transport’ to send them home

A Doctor's Story of MAiD at the End of Life

From Twitter:

I'd like to share some reflections on the death of a patient. I’ve thought about her a lot.

She gave me explicit consent to tweet the details of her case, about four hours before she died. Her hope was that someone might benefit from her experience.

/1

— David Juurlink (@DavidJuurlink) May 18, 2019

He went on:

She came to hospital as octogenarians often do: with generalized weakness, falls, poor oral intake, fever, hypotension.

Her WBC was 17,000. Blood cultures grew E. coli.

Sepsis. Fixable enough.

But she also complained of pain in her groin and thigh. It was new, progressive and debilitating.

Even moving around in her hospital bed was agonizing.

A month earlier, she’d been found to have a large pseudoaneurysm arising from her external iliac artery.

(And yes, that’s a screw from a previous hip replacement traversing it.)

She underwent stenting and returned home.

Because she was septic and in pain, we scanned her again. The new CT showed extensive gas within the pseudoaneurysm.

It was now infected, and that was a big problem.

We continued antibiotics. She improved. We got her pain under reasonable control with hydromorphone and various other meds.

But then came the big question: “Now what?”

She wanted no more surgery. Her mind was now sharp, and she was clear about that.

But antibiotics alone weren’t going to cure the infection; they would only suppress it.

The best option, we suggested, would be antibiotics for the rest of her life.

We discussed this option at length. She didn’t want it either. She explained why.

Pain was one reason. Meds helped a little, as long as she didn’t move around much. But our drug options were limited, and pain was going to be a persistent problem.

Her even greater concern, looking forward, was quality of life.

Over the preceding months, she’d lost her mobility and independence. She wasn’t going to get them back and she knew it.

She foresaw being confined to her apartment, in pain, struggling with her walker.

No more walks outside. No trips to the grocery store. No playing bridge with her friends, as she had done for years.

She wasn’t interested in living like that.

We discussed palliative care: stopping antibiotics, increasing her pain meds, and keeping her comfortable while the infection took its course. Her family would keep vigil at her bedside for as long as it took.

She wasn’t interested in dying like that.

She knew she was nearing the end of her life. What she wanted, she told us, was for it to end peacefully, with her mind still sharp, and her family and friends present. She wanted medical assistance in dying (MAiD).

We held a family meeting. Relatives came from near and far.

They were unconditionally supportive. As it turned out, she’d discussed the prospect of MAiD, were it ever to become an option, several times in recent years.

So that became the plan.

I saw her every day after that. Managed her pain. Listened to her stories. Learned about family members who’d died, and whose deaths had influenced her decision now.

Never once did she reconsider. I grew very fond of her, especially her wit and clear-eyed stoicism.

After the requisite waiting period and medical assessments, the day had come.

I visited her at 7:30 that morning. She was alone but upbeat, eating Cheerios and toast from her tray.

(I still regret that this was her last meal. Wish I’d brought her a fresh bagel with lox.)

A few hours later, her room was packed with family and friends. It was literally a party.

There was talking and laughing and cognac in Dixie cups. The mood was anything but funereal.

They gathered around her bed. I took a group photo. Everyone was smiling.

I then watched as a colleague reviewed everything one last time, confirmed her wishes, explained what would happen, and answered everyone’s questions.

“Okay, I’m ready,” she said. Her composure was remarkable.

“Goodbye everyone. Thank you for everything. I love you all.”

She received midazolam and dozed off peacefully, her children holding her hands and stroking her head.

Next came propofol, an anaesthetic.
Then rocuronium, a muscle relaxant.
Finally, potassium chloride, to stop her heart.

Five minutes after saying goodbye, she was dead.

There were tears, of course. All around. But mostly the atmosphere in the room was one of serenity and gratitude, and a genuine sense of having done the right thing.

I’m no MAiD expert, and I get that some people are opposed to it for various reasons. But I’ve been a doctor for 25 years, and I’ve seen enough deaths to know a good one from a bad one.

This was, without exaggeration, the best death I have ever witnessed.


We all die eventually. This patient helped me realize that when my time comes, I'll be fortunate if MAiD is an option.

And I will always be thankful to her, her family, and a very skilled colleague for helping me appreciate just how good a “good death” can be.

Calling the Birds Home: Portraits of a Mother With Dementia

The New Yorker has an article about photographer Cheryle St. Onge, who has created a series of photographs of her mother as she struggles with dementia. They are heartbreaking but beautiful and in every way a true collaboration.

"We Stopped Seeing Her"

We now are in a time of medicine where we will take that small child running through the yard, being chased by her brother with a grasshopper on his finger, and imprison her in a shell that does not come close to radiating the life of what she once had.

We stopped seeing her, not intentionally perhaps, but we stopped.

This is not meant as a condemnation of the family of these patients or to question their love or motives, but it is meant be an indictment of a system that now herds these families down dead-end roads and prods them into believing that this is the new norm and that somehow the old ways were the wrong ways and this is how we show our love.

A day does not go by where my partners don’t look at each other and say, “How do we stop this madness? How do we get people to let their loved ones die?”

I Know You Love Me -- Now Let Me Die

Death Wellness is Not an Oxymoron

"Too many people die clinical deaths,” says Beth McGroarty, vice president of research and forecasting for the Global Wellness Summit.

The Global Wellness Institute, a nonprofit organization dedicated to healthy living, identified an emerging trend gaining traction among multiple U.S. age groups. It’s death wellness, in which healthcare experts, academics, and spiritual leaders welcome us to confront anxiety about eternal rest, as well as learn how to support the individual and family throughout the dying process.

Also called the “death positive movement,” it encompasses events, workshops, and new modes of care. Death doulas (sometimes dubbed death midwives) coach those on their deathbed; death cafes gather the morbidly curious to discuss their fears; and legacy projects force the dying to communicate their will and essence. An entire cottage industry has stepped in to make people more prepared to accept their finality, establishing itself as an alternative to the medical establishment’s gaps in care. A good death, some will say, is now part of a good life.

“I refuse to have a terrible death:” the rise of the death wellness movement

How to Make Doctors Think About Death

Health care providers must learn that end of life care is still care.

Modern health care accomplishes great feats of healing every day. But life ends; there are patients for whom real healing has become impossible. Their bodies have simply taken too many hits. Aggressive care can push back their death for a few days, but it is unlikely to keep them from dying soon.

These situations tend to be obvious to clinical staff, and especially nurses. We administer the hands-on care. But for those around us — physicians, families and the hospital generally — they are not at all clear, and too easily clouded by emotion. That’s why we need end-of-life treatment guidelines.

How to Make Doctors Think About Death

Missing a Sister Who is Still Somehow Here on Social Media

After all, if I could still see her, hear her and text her, was she really gone? If Facebook reminded me annually of her birthday and calculated the passing years into her current age, then her death wasn’t a period or an end but more of an ellipsis, and I could still imagine the “…” of a chat bubble popping up at any moment.

When someone you love disappears, there’s no finality of an autopsy report or the closure of a funeral. All you have is a lack of presence. You can piece together the mystery like in the Nancy Drew books you used to devour, but there’s no memorial service to confirm the truth. And that’s the problem: The promise of possibility, however faint, is harsher than any certainty.

It has now been five years since her disappearance, and I still fantasize about an alternate outcome. That senseless hope is hard to smother, the off-chance that someday I may see her face in a crowd, as familiar as my own reflection. I’ll run toward her and save her this time.....Facebook cannot mimic my sister’s flowery handwriting, remind me how she smelled when wearing her favorite perfume or hug me the way she used to. But it can preserve the post she left on my wall six years ago that reads, “I love you.”

Sometimes, that’s enough.

Years Ago My Sister Vanished. I See Her Whenever I Want

A Place to Leave A Memory: David Best "Temple" at the Renwick Gallery

New on Netflix: Grief Comedy/Drama "Dead to Me"