Wednesday, September 20, 2017

The Inspired Funeral

There is a thoughtful, wise new resource about death and dying online: The Inspired Funeral.  Highly recommended.  From the home page:

When death looms, we are all lost children. This is when we long for ritual and ceremony to help us honor our humanity and feel held by something larger. We've found some of our favorite readings to share with you, and ceremony templates to help you envision what might be possible. Use them to create what fits the dying or deceased person you are honoring, your family and friends. We welcome you to build a loving, digital obituary here too. If you need more personalized support, please reach out for help.

7 Ways To Save Money When You Die | HuffPost

When I was in the government, I worked on the rule described here that requires disclosure of funeral costs.  Note the main point below -- what you spend on the funeral is not a reflection of your feelings for the person who has died.  Increasingly, families are choosing simple, ecologically friendly funerals with simple, unpolished wood caskets or cremation.
Dying can be an expensive proposition, and when the death of a loved one occurs, nobody is in the mood to go comparison shopping or start hunting down deals. The median cost of a funeral home’s services is $7,180, according to 2015 data from the National Funeral Directors Association. But that’s just the funeral home. 
Add to that cemetery costs, grave-digging and grave markers, and says the average funeral in the U.S. can cost more like $10,000. And the Federal Trade Commission says even that may be underestimating things. Sometimes, $10,000 barely covers the cost of a casket alone ― especially if you were thinking mahogany or copper.  But there are ways to save money on your death. And remember, the amount of money someone spends on a funeral bears no correlation to how much the deceased was loved. Practical people die too.

7 Ways To Save Money When You Die | HuffPost

Sunday, September 17, 2017

What Not to Say to Bereaved Parents (reprinted with permission)

6 Things We Need To Stop Saying 
To Bereaved Parents
Joan Markwell knows the gut-wrenching, hollow feeling left behind when a child is taken too early. It’s a feeling that mothers have experienced recently and throughout the last few years after tragic attacks in Orlando, Manchester, London, San Bernardino, Calif., and Charleston, S.C., just to name a few. 
With every new tragedy, vigil, story on the news or anniversary recognizing these events, plenty of mothers like Markwell – who lost her adult child to cancer – feel the sting of the wound that accompanies their loss. While that wound may have healed, there is still a scar left as a reminder of the pain that still lives on for many grieving family members, including mothers who are surviving with that pain in many different ways. 
“When a mother loses a child, the grief dictates her life,” says Markwell, author of the book Softening the Grief. “You don’t see an end to the pain. As the body reacts to the stress you feel, physical pain follows. Sleep is out of the question.”
It’s a grief that only they understand, however, and one that others usually don’t know how to deal with. “The first time we meet a friend since the death of our child occurred can be frightening,” says Markwell, “It’s not that we don’t want to see them; we just can’t face anyone without tearing up.” To avoid those awkward situations, Markwell offers up some phrases you should avoid saying to grieving parents and instead offers alternatives: 

  • “You Are So Strong.” In reality we are exhausted from trying to look strong. Try this instead: “I know it’s hard to be strong right now. I’m here for you to lean on anytime. I have an open heart and time to listen.”

  • “Be Glad You Have Other Children.” We may have other children, but they cannot replace the child we’ve lost. Try this instead: “No child is replaceable, but I hope having your surviving children around you helps in easing the pain of your loss.”

  • “You’re not the first mother who has lot a child.” Yes, but this is the first time I’ve lost my child. Try this instead: “I know mothers who have lost children and how much they grieved. That has made me aware of what a fight this is for you. You will continue to be in my thoughts.”

  • “My child almost died, I know how you feel.” If you said this, you only had a clue about how it might feel to lose a child. Try this instead: “My child had a close brush with death, which was terrifying enough. There can be no comparison to actually losing a child.”

  • “Time heals all wounds.” In time the mind covers wounds with scar tissue and pain lessens. But it’s never gone. Try this instead: “I hope in time your pain and grief will soften. Knowing it will take time, I stand beside you for the long haul.” 

  • “Everything Happens for a Reason.” There is never a good enough reason as to why our children were taken. Try this instead: “It goes beyond reason for any child to be taken from a mother. There was certainly no good reason to lose yours.”

“These awkward but common questions and statements can trigger a world of grief for bereaved mothers,” says Markwell. “When talking to a grieving parent about their lost child, it’s best to take a step back and choose your words carefully.”  

 About Joan E. Markwell 

Joan Markwell is a small business and real estate owner who resides in Lawrenceburg, Ky. She is a former board member of the Lawrenceburg (Ky.) Chamber of Commerce, former board member of the Spencer County (Ky.) Tourism Board and former vice president of the National Association of Women in Construction, Bluegrass Chapter (Lexington, Ky.). Markwell lost her daughter Cindy – who was a mother of two herself – to cancer in 2013. Cindy’s children, Lucas and Samuel, are a big part of Markwell’s life, as is her son, Kris Fields. 

Thursday, September 14, 2017

When You Lose Someone You Love -- A New Book from Joanne Fink

Joanne Fink's new illustrated book, When You Lose Someone You Love, is a touching reminder that just when we feel most alone, we can reach out to find compassion and understanding. It will be released October 10, 2017 from CompanionHouse Books.

Tuesday, September 12, 2017

John Cleese on Death

New York Magazine's Vulture: Is death funny?

John Cleese: It is. Death is certainly present in my life, and there’s humor to be mined from it. Somebody was saying to me last week that you can’t talk about death these days without people thinking you’ve done something absolutely antisocial. But death is part of the deal. Imagine if, before you came to exist on Earth, God said, “You can choose to stay up here with me, watching reruns and eating ice cream, or you can be born. But if you pick being born, at the end of your life you have to die — that’s non-negotiable. So which do you pick?” I think most people would say, “I’ll give living a whirl.” It’s sad, but the whirl includes dying. That’s something I accept.

John Cleese on Monty Python and Political Correctness:

Saturday, September 9, 2017

A gentle parting eases the pain of death

"I knew her for only a few hours, yet I can never repay her kindness. I don’t even know her name. But during those frightening final hours, as we watched Dad slip away, she discreetly, gently held us together, answering our bewildered questions, asking us about his life, even — incredibly — making us laugh. With a calm quiet reassurance that so many palliative care nurses possess, honed by years spent easing the sick from this world, she transformed our truly distressing situation into an almost comforting farewell. Where and how someone dies has a profound effect on those left behind and often dictates how they cope with the loss. Witnessing the death of someone you love is a mixed blessing. Nothing can prepare you for the brutal emptiness that fills the room when life has departed...There’s no such thing as an easy death. I hope when my time comes I will have few regrets. I hope I can look into the eyes of those I love and have them know the priceless comfort and joy they have brought me during my life, right to the end."

A gentle parting eases the pain of death:

The Hard Work of Not Fixing

"We are fixated on fixing. When I was a hospice chaplain, I always thought I had the best job in the office. The hospice staff diverged from the medical model, devoting its best practices to keeping the patients comfortable at a point along the living-dying continuum when all the treatment options had been exhausted and none of them was working any longer. Still, there were a great many questions to ask, problems to solve. The nurse had to figure out which medication would alleviate George’s intractable nerve pain and which would help him sleep when he was overwhelmed by anxiety. The social worker had to assess Margaret’s caregiving team to determine if her husband and daughter were up to the challenges. I had no such agenda. I was not required to bring my laptop with me when I visited patients and their families. I was just there, doing the hard job of not fixing."

seventysomething: When it's time to stop fixing life's holes | PBS NewsHour

Grief In The Classroom: 'Saying Nothing Says A Lot' : NPR Ed : NPR

[H]ow should educators handle the death of a student's loved one? A new website — — is trying to help teachers and school leaders answer that question. It's a database of fact sheets, advice and videos...."The teachers want to know exactly what and what not to say to a student." And that's the challenge: Most teachers aren't trained social workers. Which is why Luz Minaya welcomes the extra resources. She teaches Spanish and technology at a public middle school in New York City. The 17-year teaching veteran says she received "no training" for how to deal with student grief. "You go to college and you study to become a teacher. But no one tells you how to deal with the emotional aspect of students," Minaya says. Her school has a large population of Latino students. Many are very close to their grandparents, Minaya says, and when an elder dies, she's seen that grief affect behavior, attendance and performance. "Teachers really have a major role in the safeguarding of the student," Minaya says. "I don't want to have to depend on the guidance counselor or wait for the social worker who comes once a week." The Coalition's new site includes lots of guidance for teachers that's refreshingly specific, like this: Avoid comparisons. Saying "my father died, too" shifts attention to a competing loss and away from the grieving student. Also, avoid trying to comfort a student with any sentence that begins with "at least." Educators shouldn't try to make light of the situation or find good in the sad, says Schonfeld. The teacher's goal should be to support grieving students by making clear to them that they are safe and have someone to talk to.

Grief In The Classroom: 'Saying Nothing Says A Lot' : NPR Ed

Tuesday, September 5, 2017

Sally Quinn on her husband Ben Bradlee's struggles with dementia in his final years - The Washington Post

"I was devastated by Ben’s change in attitude and behavior toward me. His personality had always been sunny and optimistic. Suddenly he had become moody, downbeat, and in some instances outright hostile. Nobody else saw that side of him. It was only directed at me. I was crushed by the changes in him. They had come on gradually, but now it was clear that this behavior was intensifying and not going away. He didn’t like the idea of being “put on the couch.” He also didn’t like to be on the defensive, which he definitely was once I described the situation from my point of view. Ben seemed a bit confused when he heard me relate our problems, as though I were talking about somebody else, not him...It had been five years since he had been diagnosed with early-stage dementia, but few outside the family knew it."

Sally Quinn on her husband Ben Bradlee's struggles with dementia in his final years - The Washington Post:

Friday, September 1, 2017

The Day I'll Finally Stop Grieving

I’ve realized that Grief doesn’t just visit you for a horrible, yet temporary holiday. It moves in, puts down roots—and it never leaves. Yes as time passes, eventually the tidal waves subside for longer periods, but they inevitably come crashing in again without notice, when you are least prepared. With no warning they devastate the landscape of your heart all over again, leaving you bruised and breathless and needing to rebuild once more. Grief brings humility as a housewarming gift and doesn’t care whether you want it or not. You are forced to face your inability to do anything but feel it all and fall apart. It’s incredibly difficult in those quiet moments, when you realize so long after the loss that you’re still not the same person you used to be; that this chronic soul injury just won’t heal up. This is tough medicine to take, but more difficult still, is coming to feel quite sure that you’ll never be that person again. It’s humbling to know you’ve been internally altered: Death has interrupted your plans, served your relationships, and rewritten the script for you. And strangely (or perhaps quite understandably) those acute attacks of despair are the very moments when I feel closest to my father, as if the pain somehow allows me to remove the space and time which separates us and I can press my head against his chest and hear his heartbeat once more. These tragic times are somehow oddly comforting even as they kick you in the gut.

The Day I'll Finally Stop Grieving

Friday, August 25, 2017

Every Third Thought by Robert McCrum review – how to think about death | Books | The Guardian

Is stoicism the best way to cope with the “miasma of melancholy” (Nora Ephron’s phrase) that can shroud the declining years? William Hazlitt thought so: since there has already been, for each of us, “a time when we were not”, and this “gives us no concern”, why be afraid of death? Julian Barnes saw off such arguments in his book Nothing to Be Frightened Of, as did Larkin in his poem “Aubade”.  
McCrum is more patient with those who find reasons to be cheerful. “If you have religion,” Sally Vickers (a Christian) says, “it gives the drama of death a place in the theatre of things.” As to ageing, Adam Phillips argues that “Every stage of the life cycle is interesting”, and there are “more possibilities when we are 70”.  
Denial is another coping mechanism (William Empson considered death a topic “people should be prepared to be blank upon”). It doesn’t let you off the grave but may ease your passing. When McCrum visits a friend who is dying from leukaemia, he’s troubled by his deluded talk of recovery. But he accepts that it would be cruel to disenchant him. I had a similar experience with my father. Having been told the worst (inoperable cancer, just weeks to live), and having made sure I knew it too, he chose not to discuss it again.  
“The dying have a right to their decease,” McCrum says, though in the UK the law is stacked against them. What terrifies most of us is the prospect of dependency. We had it before, as infants, but have no memory of that; this time we’ll be conscious of it, with the knowledge that our dependency will only get worse. Interventions that prolong life can also impair it; as the neurosurgeon and author Marsh says, death is often a preferable outcome. McCrum himself hopes for a quick death, in his sleep; better that than a decade of incontinence in institutional care. Yes, the will to live persists, even in those with no quality of life. But if their brains were fully functional, would they choose to go on?

Every Third Thought by Robert McCrum review – how to think about death | Books | The Guardian:

The Sacred Silence of Visiting the Dying - The Manifest-Station

"Some dread spending time with a loved one who is dying or grieving because they don’t know what to say. So I say, say nothing. Enter the room. Enter into their day and let them know by a caress, a nod, a grin, or a tear, that you are there. And so are they."

The Sacred Silence of Visiting the Dying - The Manifest-Station

New Japanese augmented-reality service lets you meet with deceased loved ones at their graves | SoraNews24

The Japanese tombstone-engraving company Ryoshin Sekizai has released a new augmented-reality service that is sure to change lives… and deaths. They’re offering to set up a virtual “gravesite” for your deceased loved ones, where you can visit them as if they were really there.

New Japanese augmented-reality service lets you meet with deceased loved ones at their graves | SoraNews24:

Are You There, Dad? It’s Me, Alice - The New York Times

Jessie Glenn wrote about writing to her 10-year-old niece after her father, Glenn's brother, died by suicide.
But his email account lived on. I would leave it logged in and up on my computer on the tab to the left of my own email. (I still do.) He wasn’t getting many emails, mostly junk or notices from various lists he had been on — notifications from Alice’s school and alerts about lost neighborhood dogs. Then one day a new message popped up: “hi dad” I stared for a while at Alice’s message, so plaintive and weightless, without even the anchor of punctuation. I wondered if I should reply. I asked a therapist friend, who said: “Don’t answer as her father unless you ask Alice and she agrees to it.” It took me a few days to figure out how to ask Alice casually. During that time, I searched and read every email and text he had sent her. I studied his punctuation, his cadence, his vocabulary and his endearments. So many exclamation points. And then I texted her: “I’m on your dads email. can i write you from it?” She replied: “wait what? oh ok” “i guess i want to pretend,” I explained."

Are You There, Dad? It’s Me, Alice - The New York Times

Thursday, August 24, 2017

Makeup artist's magic helps cheer his mom after his brother's death -

A Hollywood makeup artist visits his mother in an assisted living home to make her feel glamorous and beautiful.

ABC Breaking News | Latest News Videos
"When you don't look like yourself, you don't feel like yourself, and your personality changes,'' he said. "When she's glammed back up, her personality shines." Christine, who suffers from mild dementia, has become a bit of a star and earned the nickname "Glams" since Quinn began livestreaming the makeup sessions on Facebook. "With the elderly, they can really start to become isolated when their friends move away or pass away,'' Quinn said. "The Facebook videos allow her to interact, and she loves it." Initially Quinn could only get away with putting some foundation and lipstick on his mother, but now he says she's open to brighter colors and more glamorous looks. "She gets a kick out of it now,'' he said. "Sometimes when people are on medication, it kind of squishes their personality. I tell the nurses, 'Give me 20 minutes with my mom to do her makeup, and you will see an entirely different person.'''

Makeup artist's magic helps cheer his mom after his brother's death -

Tuesday, August 22, 2017

Most hospices fare well in first public release of Medicare quality scores

"For the first time, Medicare officials Wednesday posted quality scores for some 3,800 hospice providers on its new website, Hospice Compare, aimed at helping people select hospice facilities for themselves or others. In a press briefing Wednesday, Kate Goodrich of the Centers for Medicare & Medicaid Services said the effort will provide a 'snapshot on the quality of care delivered by each provider' that will 'help consumers make informed decisions.' Scores for the vast majority of hospices were near the top end of the quality range — so good, in fact, that some observers questioned whether consumers will find the data useful for comparison shopping."

Most hospices fare well in first public release of Medicare quality scores

Sunday, August 20, 2017

Death Doula Diary: Working At The Bookends of Life

I'm so often asked what it's like working with death, both those who are aware they're nearing the end of days, accompanying them through their death vigil, and working with families caring for their own dead....Something almost magical happens for many who are dying. Once they get through the initial shock of a diagnosis, once they've processed where they are, and what this means, and made some decisions, and begun to get some of their ducks in a row, there is a something incredibly powerful.They nearly always reach this stage where more than anything, they want to squeeze every drop of living out of every day that remains. And doing this work? You get to be a part of that journey, a part of that beauty and magic and wonder. Yes, there's a bittersweet element to it, but oh, the sweet parts? Are so very sweet!And no, it isn't this way every time; it's far more likely to happen for clients who transitioned to or have a plan in place for palliative care. If they're yet fighting to survive, and if that fight involves an endless merry-go-round of treatment, they're likely caught up in that rig-a-ma-roll - and all too often folks aren't transitioned to palliative care when they should have been - but that will be a different diary entry, one all about cure versus care.But oh, when someone reaches this space; when they've come to terms with the reality of their mortality, and they're free to look at what remains, from a deeply authentic place? These folks are oftentimes some of the most fully present, deeply alive people you will ever encounter. Time and again I am told something like, "Cancer gave me a gift, a gift I wish I'd long ago been smart enough to realize I'd always had: It helped me realize what really matters. Oh, if only I'd realized this sooner. But at least I have now, and I'm going to make every last minute count."Being around these folks, yes, it can be bittersweet, yes, but oh, how beautiful it can be, and how glorious to engage so frequently with folks who are living from a place of such depth, such authenticity.

Death Doula Diary: Working At The Bookends of Life

Sunday, August 13, 2017

In Barbara Cook’s Final Days, Her Friends Came to Sing at Her Bedside - The New York Times

"In the days before Ms. Cook’s death on Tuesday, friends from her legendary career delivered a fitting farewell: More music. Vanessa Williams and Norm Lewis, who starred with Ms. Cook in the 2010 Broadway revue “Sondheim on Sondheim,” were among those who came by her Upper West Side apartment and sang to her. Josh Groban, Hugh Jackman, Audra McDonald, Kelli O’Hara and others sent audio and video recordings full of memories and melodies. "

In Barbara Cook’s Final Days, Her Friends Came to Sing at Her Bedside - The New York Times:

Friday, August 11, 2017

"Flunking" Hospice

To qualify for hospice care, two doctors must certify that a patient is expected to live no more than six months. But patient James B. Nelson discovered that sometimes the doctors are wrong.

"It was decided that I was not dying fast enough," he told Arizona Public Media in 2015. "And so, to put it most succinctly, I flunked the hospice program."

Nelson died a few months after giving that interview, but his situation isn't all that unusual.

Government reports show that the median rate of hospice patients discharged before death has climbed steadily since at least 2000, peaking in 2012 and 2013 at almost one patient in five, though more recently the percentage has declined somewhat. But the rate actually varies widely from one care organization to another. Some hospices discharge less than 2 percent of their patients prior to death, while others discharge more than 80 percent. Non-profits have lower rates of live discharge than for-profit hospices. Regionally, live discharge rates are highest in the South.

It's important to understand, though, that when patients are discharged from hospice, they don't necessarily go anywhere. Hospice agencies, whether they are independent or affiliated with an institution like a hospital, usually deliver services to patients in their homes.

1 in 5 hospice patients discharged

Thursday, August 10, 2017

A Smile at the End of Life

When a dying man wants new front teeth, what do you do?

I told Dr. Monaco we have a terminally ill patient who needs to eat and that cosmetically, replacing the front teeth would do a lot to lift his spirits. Dr. Monaco didn’t hesitate; he told me to bring Mr. Sacchetin in and that there would be no charge for his services. When I told Mr. Sacchetin, he was deeply moved.”
Rager’s husband came to the Center first thing that Tuesday morning to bring Sacchetin to his appointment. Monaco took the dental impression and fitted Sacchetin with a “flipper,” an appliance that is commonly used for patients who require something the same day, whether due to trauma or extraction. It was ready that afternoon.
“My heart really went out to him. As soon as I saw him, I knew it was the right thing to do,” said Monaco, who not only waived his fee but also covered the lab costs out of his own pocket. “I was eager to help out in any way I could for someone in need like that,” he added.
When he got his teeth back that afternoon, Sacchetin turned to Monaco with a huge smile of thanks and said, “Beautiful.”
Monaco said the experience nearly brought him to tears. “It really showed that human part of all of us that says ‘I want to leave this world with a smile, looking the best that I can.’ He was so happy when the flipper went right in with a perfect fit, and it was so important to me that he was happy.

A Smile at the End of Life

Monday, August 7, 2017

Rules for Social Media Posts on Death -- Let the Family Take the Lead

 "When someone dies  — whether suddenly or after a prolonged illness, via natural causes or an unnatural fate, a young person in their prime or an elderly person with more memories behind them than ahead — there is one universal truth : The ripples of people who are affected is vast and, at times, largely unknown to all other parties. A death is always a gut punch with varying degrees of force and a reminder of our own mortality. Most people are moved to express their love for the deceased by showing their support to the family and friends left behind....This isn’t breaking news, and you’re not trying to scoop TMZ. Listen, I know you’re hurt. Guess what? Me too. I know you’re shocked. Guess what? Me too. Your social media is an extension of who you are. I get it. You “need” to express your pain, acknowledge your relationship with the deceased, and pray for the family. Yes. However... Please give us a minute. We are shocked. We are heartbroken. Give the immediate family or circle a little time to handle the immediate and time-sensitive “business” related to death. In the minutes and early hours after someone passes away, social media is most likely the last thing on their minds....I caution you to wait and then wait a little longer before posting anything. This may seem trivial, silly, and not worth talking about, but I promise you it isn’t. If the person is married, let the spouse post first. If the person is “young” and single, let the partner, parents, or siblings post first. If the person is “old” and single, let the children post first. If you can’t identify the family/inner circle of the person, you probably shouldn’t be posting at all."

Please read this before you post another RIP on social media.:

Sunday, August 6, 2017

CONFESSIONS OF A FUNERAL DIRECTOR » 10 Pieces of Advice for Picking Up a Dead Body

"Never, ever rush the family.  I always tell the family, “You have as much time as you need.”  Permission is so key.  But word’s aren’t enough.  Your body language has to say the same thing.  So, if the family is waiting on a relative to arrive from an hour away, or if they just need an extra half an hour with the deceased, take a deep breath, relax, find a seat on the sofa, and let grief run its course."

CONFESSIONS OF A FUNERAL DIRECTOR » 10 Pieces of Advice for Picking Up a Dead Body

The doctors who assist in suicide on what it's like to end a life

Building a system for assisted death from scratch, Li found, was a daunting task. To protect doctors who wanted nothing to do with the practice, she created a specific MAID team for UHN: 18 people to do the assessments and 13 to do the procedure itself. When a patient requests a medically assisted death, the front line doctor alerts the team, which takes over the end-of-life process. Two doctors perform the assessments. A third performs the procedure.
Figuring out the best method for death was also complicated. In Oregon, where assisted death is legal, doctors can write patients a prescription for a lethal oral medication and then walk away. Canadian physicians were surprised to learn that the barbiturates used in that protocol weren’t available here. Instead, doctors and nurses deliver a series of drugs intravenously, a process that is far more intimate than writing a prescription. Assisted death, the polite euphemism used to describe the act, is really a misnomer. Doctors don’t “assist” in a death; they are the active agents. “We are doing euthanasia,” says Li. “We are actively ending a life. And it’s very new to us.”

The doctors who assist in suicide on what it's like to end a life

Saturday, August 5, 2017

Rural Doctor Launches Startup To Ease Pain Of Dying Patients : Shots - Health News : NPR

This is a great story about Dr. Michael Fratkin, who has developed an independently funded end of life practice.

"Fratkin is an internist and specialist in palliative medicine. He's the guy who comes in when the cancer doctors first deliver a serious diagnosis. He manages medications to control symptoms like pain, nausea and breathlessness. And he helps people manage their fears about dying, and make choices about what treatments they're willing — and not willing — to undergo."

Rural Doctor Launches Startup To Ease Pain Of Dying Patients : Shots - Health News : NPR

A woman’s dying wish was a milkshake. So a restaurant 3 states away made sure she got it. - The Washington Post

From her hospice bed in Arlington, Emily Pomeranz said she wanted two last things — a Cleveland Indians hat and a mocha milkshake from a restaurant back home in northeastern Ohio. Pomeranz, 50, was dying of pancreatic cancer, and an old friend, Sam Klein, wanted to make her wishes come true. The first was simple. The second would require some ingenuity. Klein said in a Facebook post this week that he contacted Tommy’s Restaurant in Cleveland Heights and inquired about a long-distance milkshake delivery. “’Yes. We will figure out a way to do this,’” Klein quoted the popular restaurant’s owner, Tommy Fello, as saying. Within days, Klein said, that mocha milkshake had made it some 375 miles, across several states, to Pomeranz’s bedside.

A woman’s dying wish was a milkshake. So a restaurant 3 states away made sure she got it. - The Washington Post

Friday, August 4, 2017

A Quaker Approach to Living with Dying

"My formative experience with regard to the Quaker way of dying was by accompanying a Friend through her decline and death. Her final illness, dying process, and death were Quaker community and meeting experiences. Her experience wasn’t a private or family-only affair. When she couldn’t come to meeting, small groups of Friends were dispatched to her home, hospital, or nursing facility to have meeting for worship with her. Friends from meeting stayed with her overnight in the hospital when she had to be on the breathing machine and was so uncomfortable and scared. She had a committee of trusted Friends who arranged for her practical needs when she was still able to live independently, including staying with her 24/7 when just home from the hospital and at times of extreme debility. These Friends helped with discernment regarding transition from independent living to a skilled nursing facility. In what turned out to be her final hospitalization, these Friends helped her discern her choice to decline heroic life-sustaining treatment and allow herself a natural death. Friends reflected with her about her desire for integrity and living in alignment with the testimonies, her beliefs about an afterlife. She was afforded the opportunity, though her Quaker way of living, to proceed to a Quaker way of dying. One First Day, as we knew death was approaching, our meeting of about 80 Friends decided to meet in a hospital conference room for worship. About halfway into the worship hour, a Friend came downstairs to announce our Friend’s death. It was a gathered meeting. Our Friend died the way she had lived."

A Quaker Approach to Living with Dying

Medicine has become a service industry, and it's making doctors unable to confront death | Seamus O'Mahony | Pulse | LinkedIn

"[Doctors] increasingly see themselves as service-providers, a role that does not encourage Difficult Conversations, or a willingness to be brave. Consumerism, fear of litigation and overregulation have conspired to create the customer-friendly doctor, who emerged when the doctor–patient relationship became recast in a quasi-commercial mould. This type of doctor, well trained in communication skills, eminently biddable, is not what Kieran Sweeney or Atul Gawande had in mind. Doctors, by the nature of their selection and training, are conformist, and the now dominant ethos of customer-friendliness has all but silenced other, dissenting, voices. There is now an insatiable appetite for medicine: for scans, for drugs, for tests, for screening. This appetite benefits many professional groups, industries and institutions. It is difficult to call ‘enough’, but a good doctor sometimes has to tell patients things they do not want to hear. Regrettably, it is much easier, in the middle of a busy clinic, to order another scan than to have the Difficult Conversation."

Medicine has become a service industry, and it's making doctors unable to confront death | Seamus O'Mahony | Pulse | LinkedIn:

Senate approves ‘Right to Try’ bill to allow terminally ill patients access to unapproved drugs - MarketWatch

"The U.S. Senate on Thursday approved a measure known as Right to Try, which would give terminally ill patients nearly automatic access to experimental drugs that haven’t yet been approved by the Food and Drug Administration. A similar bill has strong support in the House of Representatives and the overall concept has been endorsed by the White House, so the legislation seems likely to become law. "

Senate approves ‘Right to Try’ bill to allow terminally ill patients access to unapproved drugs - MarketWatch:

Senate approves ‘Right to Try’ bill to allow terminally ill patients access to unapproved drugs - MarketWatch

"The U.S. Senate on Thursday approved a measure known as Right to Try, which would give terminally ill patients nearly automatic access to experimental drugs that haven’t yet been approved by the Food and Drug Administration. A similar bill has strong support in the House of Representatives and the overall concept has been endorsed by the White House, so the legislation seems likely to become law. "

Senate approves ‘Right to Try’ bill to allow terminally ill patients access to unapproved drugs - MarketWatch:

Questions for Me About Dying | The New Yorker

Cory Taylor writes in the New Yorker:

In taking part in “You Can’t Ask That,” I wanted to do my bit to change things around, to win back some dignity for the dying, because I don’t think silence serves the interests of any of us. The questions, as it turned out, were unsurprising. Did I have a bucket list, had I considered suicide, had I become religious, was I scared, was there anything good about dying, did I have any regrets, did I believe in an afterlife, had I changed my priorities in life, was I unhappy or depressed, was I likely to take more risks given that I was dying anyway, what would I miss the most, how would I like to be remembered? These were the same questions I’d been asking myself ever since I was diagnosed with cancer, back in 2005. And my answers haven’t changed since then....Yes, I have considered suicide, and it remains a constant temptation. If the law in Australia permitted assisted dying I would be putting plans into place right now to take my own life. Once the day came, I’d invite my family and closest friends to come over and we’d have a farewell drink. I’d thank them all for everything they’ve done for me. I’d tell them how much I love them. I imagine there would be copious tears. I’d hope there would be some laughter. There would be music playing in the background, something from the soundtrack of my youth. And then, when the time was right, I’d say goodbye and take my medicine, knowing that the party would go on without me, that everyone would stay a while, talk some more, be there for each other for as long as they wished. As someone who knows my end is coming, I can’t think of a better way to go out. Nor can I fathom why this kind of humane and dignified death is outlawed....Yes, I’m scared, but not all the time. When I was first diagnosed, I was terrified. I had no idea that the body could turn against itself and incubate its own enemy. I had never been seriously ill in my life before; now suddenly I was face to face with my own mortality. There was a moment when I saw my body in the mirror as if for the first time. Overnight my own flesh had become alien to me, the saboteur of all my hopes and dreams. It was incomprehensible, and so frightening, I cried. “I can’t die,” I sobbed. “Not me. Not now.” But I’m used to dying now. It’s become ordinary and unremarkable, something everybody, without exception, does at one time or another. If I’m afraid of anything it’s of dying badly, of getting caught up in some process that prolongs my life unnecessarily.

Questions for Me About Dying | The New Yorker

Grief is Not a Competitive Sport -- But Sometimes It Feels That Way

Cheryl Strayd: "Your tragedy doesn’t obliterate her sorrow. Your experience doesn’t erase hers. "

Grief’s 7 Stages Don’t Include Envy and Resentment - The New York Times:

Thursday, August 3, 2017

Coping with a spouse who has advanced cancer, in this week’s Dear Prudie extra.

From a letter to Slate's Dear Prudence:

My wife of 30 years has stage 4 metastatic breast cancer that has invaded her spine. She lives in constant pain, using heavy narcotics (such as fentanyl and oxycodone) to get through the day. Although the cancer has spread to quite a few places in her bones, there is no cancer in any major organs....Am I a terrible person for just wanting this to be over? "

Coping with a spouse who has advanced cancer

Tuesday, August 1, 2017

On Closing the Apartment of my Grandparents of Blessed Memory 

by Robyn Sarah

And then I stood for the last time in that room.
The key was in my hand. I held my ground,
and listened to the quiet that was like a sound,
and saw how the long sun of winter afternoon
fell slantwise on the floorboards, making bloom
the grain in the blond wood. (All that they owned
was once contained here.) At the window moaned
a splinter of wind. I would be going soon.
I would be going soon; but first I stood,
hearing the years turn in that emptied place
whose fullness echoed. Whose familiar smell,
of a tranquil life, lived simply, clung like a mood
or a long-loved melody there. A lingering grace.
Then I locked up, and rang the janitor’s bell.

Monday, July 31, 2017

Should We Stop Telling People to "Fight" Cancer? The Problem with Warrior Language

When Senator John McCain revealed that he has brain cancer, well-wishers including President Obama and Vice President Pence, with the best of intentions, tweeted encouraging thoughts about McCain's strength and fighting spirit.  Steven Petrow writes in the Washington Post that this inadvertently makes the patient feel responsible for the disease and the outcome.
Warrior or people-pleaser, these character-driven approaches suggest that you are responsible for your outcome. Both are just wrong. 
“There’s been pushback against the idea that this warrior mentality is necessary for a successful outcome,” Rohan Ramakrishna, a neurosurgeon at Weill Cornell Medicine in New York who specializes in brain tumors, told me in a phone interview. 
Putting it bluntly, Ramakrishna said, “Your response to treatment is a biological one, not a psychological one.”
People use warrior metaphors with good intentions, Ramakrishna explained, but the unfortunate flip side is the implication that it’s your own fault if the cancer comes back, or if you die. Those who triumph over more-curable diseases, such as cancers that have effective treatments, aren’t tougher than those facing glioblastoma — it’s just that the odds are more in their favor.

Sunday, July 16, 2017

Hospice chaplain tries to give patients purpose and peace | The Wichita Eagle

"We deserve to die in peace, Father Tom Welk says. He’s the chaplain at Harry Hynes Memorial Hospice in Wichita. You could say he counsels the dying. He says he counsels the living. We should talk about death more, he says. We should help each other die in peace....So hospice care is not only about giving comfort. It’s about giving purpose."

Hospice chaplain tries to give patients purpose and peace | The Wichita Eagle

The Death Goes Digital Podcast — Death Goes Digital

Listen to the Death Goes Digital podcast, with episodes about "digital legacies"and online obituaries.

The Death Goes Digital Podcast — Death Goes Digital:

Teens learning life lessons in palliative care | CTV Montreal News

A Canadian program for teens who want to go into medicine has them working in palliative care:
"It's not because people are at the end of life that they don't want to talk about everyday things. Everyone is still mad at the Habs or whatever. They're still people, they still know what's going on," she said. Among those lively patients is Flo. The 92-year-old spent Thursday chatting with the students about her life, raising her family, and her job working at the Lachute Watchman newspaper. "They've got a lot to learn but we can also learn from them. It can work both ways," said Flo. Amy Schecter said after just four days, she is learning quite a bit from the patients at the centre, especially "to really enjoy life. As cliché as it may sound life is super important. Live it, have fun with it, and do your best."

Teens learning life lessons in palliative care | CTV Montreal News

Widower's Grief: Cantus: the Silence of Grief

"There is a great deal of silence in our lives now. Silence at home when we are cooking. Silence in the places they used to sit. Silence where we are used to hearing their voices talking about the inconsequentials of the day. We hear echoes of their laughter in the silence. In Cantus, and in grief, we are waiting in the silence for something to happen. And we are not waiting, because something is happening. We are listening. In the space between what we’ve known and what is not yet here, we are listening for the unknown. We are listening to the silence of grief, and the tension is exquisite, like salt and lime on the lips before the tequila."

Widower's Grief: Cantus: the Silence of Grief

When a Child Dies

Saturday, July 15, 2017

Why I locked my father away -

I felt like a new parent of a very large adult toddler; I had to watch him constantly. I wanted nothing more than to keep him with me but I was rapidly realizing that I couldn’t handle him. I’d go shopping and come home to a house full of gas — Dad had tried to cook but was used to an electric stove. The week before he walked my dog, as he had for years, and turned an around the block spin into a multi-hour silver alert ordeal. Fire and police finally found them both dehydrated four miles away....Of the top 10 diseases afflicting Americans today, nine are declining. Only one is spiking: dementia. Dementia alone will break the backs of Medicare and Medicaid — it’s projected to account for more than 70 percent of all costs by 2028. Homes don’t have to be like the sadder places I visited, residents acting like drooling zombies parked in front of televisions. As the need for care spikes, America needs to find non-pharmacological ways to improve the lives of those living with Alzheimer’s and dementia, and the jobs of those caring for them. Currently, more than 95 percent of research goes into drugs. No attention is being paid to care.

MemoryWell uses the power of storytelling and media to improve dementia and Alzheimer's care. Now we want to bring that to everyone.

Why I locked my father away -

Tuesday, July 11, 2017

The Gentler Symptoms of Dying -

The human body’s most compassionate gift is the interdependence of its parts. As organs in the torso fail, the brain likewise shuts down. With the exception of the minority of people who suffer sudden death, the vast majority of us experience a slumberous slippage from life. We may be able to sense people at the bedside on a spiritual level, but we are not fully awake in the moments, and often hours, before we die.  
Every major organ in the body — heart, lungs, liver, kidneys — has the capacity to shut off the brain. It’s a biological veto system. When the heart stops pumping, blood pressure drops throughout the body. Like electricity on a city block, service goes out everywhere, including the brain. When the liver or kidneys fail, toxic electrolytes and metabolites build up in the body and cloud awareness. Failing lungs decrease oxygen and increase carbon dioxide in the blood, both of which slow cognitive function.  
The mysterious exception is “terminal lucidity,” a term coined by the biologist Michael Nahm in 2009 to describe the brief state of clarity and energy that sometimes precedes death. Alexander Batthy√°ny, another contemporary expert on dying, calls it “the light before the end of the tunnel.”

The Gentler Symptoms of Dying -

Sunday, July 9, 2017

Healthy retired nurse ends her life because old age 'is awful' - Telegraph

"A leading palliative care nurse with no serious health problems has ended her life at a Swiss suicide clinic because she did not want to end up as a “hobbling old lady”. Gill Pharaoh, 75, who wrote two books giving advice on how to care for the elderly, was not suffering from a terminal disease. She said she had seen enough of old age to know that she was “going over the hill” and wanted to take action to end her life while she was able to do so."

Healthy retired nurse ends her life because old age 'is awful' - Telegraph

A Widow Responds to Those Who Say it is "Too Soon" to Marry Again

Patton Oswalt, who has been very frank about his devastating grief since the death of his wife, has announced that he is remarrying.  In case anyone has a question, the only correct response to this news is: "How wonderful!  I wish them the best."  But, this being the internet, some idiots believe they have the right to express the opinion that it is "too soon."

I love this response from a widow whose husband died suddenly the same week Oswalt's wife died and who, like him, has shared her experience online:

You don’t get to comment on the choices of a widower while you sit happily next to your own living spouse. You didn’t have to stand and watch your mundane morning turn into your absolute worst nightmare. You didn’t have to face the agony of despair and the only person who could possibly bring you comfort had been ripped from your life forever. You didn’t have to stand in the ashes of what was once your life, when the sun itself darkened and the very air you breathed felt toxic in your lungs. Go back to scrolling Facebook and keep your ignorance to yourself. 
Who gave you the position to judge when it’s “too soon” for a person who has suffered the worst to be able to find happiness and companionship again? It's been 15 months! How long should a widow sit in isolation before YOU are comfortable enough to release them from their solitary confinement? Because it’s really about you isn’t it? You aren’t actually concerned about the heart of the person who has found the strength and courage to love once more. You’re worried about your own offended sensibilities rooted in old Victorian traditions. Stop pretending you are actually concerned about their “healing.” 
...The person who comes after cannot and will not replace the one we lost. To imply that is insulting to the widow, it’s insulting to the new love and it’s insulting to the love who was lost. Earlier I said that I was happy to see Patton Oswalt’s heart had expanded. I used that word intentionally. I say expanded because that's what widowed hearts do. They expand. One love isn’t moved out to make room for someone new. An addition is built. Just like my love for my daughter was not diminished by the birth of my son, so too, the love widows can have for someone new does not diminish the love of the one lost. The expansion of the heart is part of the grieving process.

Thursday, July 6, 2017

CONFESSIONS OF A FUNERAL DIRECTOR » Let’s Stop Throwing the Dead Out with the Trash

Civilians can learn a lot from the military about saying goodbye with dignity and meaning.

"Finding ways to embrace our dead, instead of hiding them, is all a part of death positivity.  We don’t need to fear our dead.  We don’t need to hide them.  We don’t need to be ashamed of them.  Instead, we need to welcome the dead into our lives and allow them spaces among the living.  However that looks at a hospital, I don’t know.  But I do know that sending the dead out the same door as the trash isn’t it."

CONFESSIONS OF A FUNERAL DIRECTOR » Let’s Stop Throwing the Dead Out with the Trash

The Most Creative People Are Also the Least Afraid of Death -- Science of Us

If you feel your purpose in life is to make something that will outlive you, it doesn’t matter as much that your body’s only temporary; indirectly, some part of you will still be sticking around. “The current findings support the notion that creative achievement may be an avenue for symbolic immortality, particularly among individuals who value creativity,” the researchers wrote. We’re all going to die one day, a fact that’s easier to swallow if you plan on leaving something behind.

The Most Creative People Are Also the Least Afraid of Death -- Science of Us

Sunday, July 2, 2017

When your dearly departed loved one was a bit of a devil | The Fresno Bee

"Can everyone be called a “loved one” or “beloved?” When people die, wounds we never imagined can rend our hearts. Eventually, with time and tending to our grief, most will cherish their memories like family heirlooms. Indeed, those accumulated memories from a lifetime likely become far more valuable than any inherited object in a living room. Nonetheless, some recollections and relationships are tainted. How about the verbally abusive parent or the always-angry grandparent? Or the children who lied to siblings, deceived parents and wrecked everyone’s life as they ruined their own lives?

...I would always hope that this widow or widower can live the remainder of their lives creating the treasure of good memories about a flawed person, rather than hoarding a storehouse of repressed hurt. Most aren’t saints; most are just human. Please, please, allow all of the honest feelings to come out as you grieve."

When your dearly departed loved one was a bit of a devil | The Fresno Bee

Creating the New American Buddhist Funeral - Tricycle

Amy Cunningham is a spiritual hero.  This interview is filled with wisdom.

We’ve allowed death and the whole dying process to become a medical event. In our communal sadness, we’ve become very insecure in hospital settings and often forget to think of our own wishes and demands, letting ourselves be buffeted about by hospital policies or funeral home pronouncements. Before we’re even cognizant of it, we find ourselves moving mindlessly along the conveyer belt that is the $14 billion funeral and death care industry.

Funeral planning can be its own spiritual practice. There’s a worksheet I hand out during my workshops on new possibilities in end-of-life rituals that involves jotting down “kitchen sink” wisdom. What do you believe with all your heart? What has your life taught you thus far? What matters most? What is your credo? We cover everything from the practical (tips on running a household, finances, fixing stuff) to the personal (relationships, personal integrity, politics) and the spiritual (musings on what life’s all about, God, goodness, meaning-making).

Creating the New American Buddhist Funeral - Tricycle

Wednesday, June 28, 2017

Poem: Reflections on Life: Grief

I had my own notion of grief. I thought it was the sad time That followed the death of someone you love. And you had to push through it To get to the other side. But I'm learning there is no other side. There is no pushing through. But rather, There is absorption. Adjustment. Acceptance. And grief is not something you complete, But rather, you endure. Grief is not a task to finish And move on, But an element of yourself- An alteration of your being. A new way of seeing. A new definition of self. ~ Gwen Flowers ~"

Reflections on Life: Grief - A Poem that Resonates

Monday, June 26, 2017

Poem: Plentitude by Ann Iverson


Even near the very end
the frail cat of many years
came to sit with me
among the glitter of bulb and glow
tried to the very last to drink water
and love her small world
would not give up on her curious self.
And though she staggered — shriveled and weak
still she poked her nose through ribbon and wrap
and her peace and her sweetness were of such
that when I held my ear to her heart
I could hear the sea.

Saturday, June 24, 2017

24 Deeply Honest Confessions From A Hospice Worker

They want you to know: they love their jobs, they care for families as well as patients, and they will do everything they can to ease someone's passing.

"We feel like we've done our job well if our patient passes away in the place and manner they chose (many people want to die at home in their own bed). And, crucially, without pain. It make us feel better if we know we've achieved that."

24 Deeply Honest Confessions From A Hospice Worker

A Dying Woman on Deconstructing Death

To start the process of grasping my fears surrounding death, I first had to ask: Is it possible to create a good relationship with death? And in order to create a good relationship with it, well, perhaps we need to understand why we have such a bad relationship with it. 
I personally see four major reasons to feel uncomfortable about death. All of them associate with fear. Fear of the dying itself, fear of what lays beyond death, fear of the life we will never live, and fear for those we leave behind. 
At this point, I believe I’ve come to peace with three out of the four. But I had to ask (and continuously have to ask) myself the following questions:
1. What is dying? 
...The way that most of [the books] describe death is not as the opposite of life, but the opposite of birth. I think this shift in language—this shift in the juxtaposition of life and death—is important. 
It is an entirely different concept. It suggests that we walk into a room and we walk out of a room, not that the room disappears. 
2. What comes after death? 
Since this is the most uncertain part of the equation, this question can bring about the most fear. Do we fear an almighty man in the sky? Burning for all eternity? That, maybe, this is it? Religion, upbringing, what we’ve experienced, what we’ve watched, and what we’ve read all play into what we believe happens after death. But the reality is, no one knows for certain. Beliefs, faith, and religion aside, really no one can say without a shadow of a doubt what happens when we die. 
In this thought, some people hold fear, and some people hold peace.  For me, this is the most fun part. As a nonreligious, but spiritual person, this is a playground of opportunity. I personally don’t hold a fear for this. Rather, I see the space beyond death as a a beautiful existence where our beings no longer hold their human form. I acknowledge my brain doesn’t have the capacity to understand this fully, and therefore I don’t try too hard to create an image or definition to coincide, rather just a feeling. This is the part of death I feel to be the most reassuring, warm, and whole. It’s the presence that gives full peace.
3. Are we afraid of the things you will miss out on, the things we never did, or the things we’ll never do?
This fear is actually comprised of regret. These are the things in life we always thought we’d achieve or have the time for. The places we wanted to go. The people we wanted to meet. The food we wanted to eat. The adventures we wanted to take. This is bucket-list stuff, and is constantly shifting....At 21, my initial diagnosis left me thinking I’d never graduate from college. A year later, I graduated with my class. At 23, just two weeks after finding out my cancer had returned, I stood next to my beautiful sister-in-law as she married my brother. I cried a good amount, most tears were of joy, but some of the salty droplets fell from the thought that I may never live long enough to get married. A year passed, and I did.....I think part of that acceptance is the realization that it isn’t those big “achievements” that were my favorite parts of life thus far....Maybe if we break it down into the little things about it we can start to get on the same level as it. Maybe we can start to repair this broken relationship with death.
4. Do we hold a fear for those we’ll leave behind? 

Currently, this is my greatest fear associated with my own death. I fear for the pain inflicted on those who will heavily feel my void. I am trying to remedy this by reminding them that my purpose here may be just that: a reminder. A reminder and an inspiration....
I suppose a more complicated question then becomes: How do we better our relationship not only with our own death, but with the death of others? And I’m starting to think this is a full circle concept. If we better our relationship with our own death, we better our relationship with the death of others....

I think as we visit and revisit each of these four major parts of death, we continue to delve deeper and deeper into a peace with it. A peace with our own death, a peace with the death of others, and a life more fully lived.

Deconstructing Death as a Dying Woman 

Bowel cancer diagnosis: ‘Please stop telling me to keep fighting’

We all have a hard time finding the right words.  Here are some very helpful ideas.

"I know it’s hard to know the right thing to say, so what should you say to someone with cancer? Often a simple “I’m sorry, I don’t know what to say” is enough. We don’t need (or want) to hear that “everything will be OK” because you don’t really know that, do you? Continue to talk how you would normally talk, before cancer entered our lives, because I am still that same person you know and love. I crave non-cancer related conversation, and I still want to hear about your day, I still want to talk about normal everyday things. Try and put your words more into actions. Offer home cooked meals or freshly baked goods, drop old magazines or books on my doorstep, or offer to come to an appointment with me. Your shoulder to cry on, your listening ears, your mere presence is enough. Let me be angry with the world, agree with me when I say that life is cruel and unfair. The best thing that you can do, is to simply be present. Whether it’s phone calls, text messages or visits, knowing that you are still by my side is the best thing I could ever hope for."

Bowel cancer diagnosis: ‘Please stop telling me to keep fighting’

Thursday, June 22, 2017

The Jewish Perspective on Dying and Death with Rabbi Laurie Dinerstein-Kurs

"The traditional view is, while we are not to shorten life...we arenot to prolong death."

  • How a dying patient (goses) should be cared for in the last hours of life 
  • What are the duties of a Shomer The Jewish ritual of Tahara (washing of the dead) 
  • The role of a Chevra Kadisha  
  • Why a traditional Jewish funeral should be relatively inexpensive 
  • Jewish burial customs 
  • The mourning ritual (Shiva) for Jewish families 

  • The Jewish Perspective on Dying and Death with Rabbi Laurie Dinerstein-Kurs

    Wednesday, June 21, 2017

    When a Pet Dies, Helping Children Through the ‘Worst Day of Their Lives’ - The New York Times

    The loss of a pet is often a child’s first experience with death. Understanding the unique ways that children view pets and respond to their passing can help parents to ease the grieving process. 
    Joshua Russell, an assistant professor of environmental science at Canisius College in Buffalo, who has studied the effects of pet loss in children, explained that for many children, pets are more than just animals. “Many kids describe their pets as siblings or best friends with whom they have strong connections,” he said. 
    In a study of 12 children ages 6 to 13 who had lost a pet, published in the journal Environmental Education Research, Dr. Russell found that even years after the pet’s death, some children still described the loss as “the worst day of their lives.” He also discovered that children come up with unique ways to rationalize their pet’s passing and that the way a pet dies influences how children grieve. “Children, in particular, have a distinct sense of existential fairness around whether or not an animal lived until an appropriate age,” Dr. Russell said.

    When a Pet Dies, Helping Children Through the ‘Worst Day of Their Lives’ - The New York Times

    The Symptoms of Dying - The New York Times

    A famous poet once wrote that “dying is an art, like everything else.” For hospice doctors, the artists of death, terminal agitation is the subject’s revolt against the shaper. It’s uncommon, but it can be difficult to watch when it happens. Instead of peacefully floating off, the dying person may cry out and try to get out of bed. Their muscles might twitch or spasm. The body can appear tormented. 
    There are physical causes for terminal agitation like urine retention, shortness of breath, pain and metabolic abnormalities. There are medications that quell it. Yet it’s hard to discount the role of the psyche and the spiritual. People who witness terminal agitation often believe it is the dying person’s existential response to death’s approach. Intense agitation may be the most visceral way that the human body can react to the shattering of inertia. We squirm and cry out coming into the world, and sometimes we do the same leaving it.

    The Symptoms of Dying - The New York Times

    Tuesday, June 20, 2017

    The parenting lessons I learned from my dying child - The Washington Post

    Jennifer Golden writes about telling her young daughter that her little brother is is dying. <P><P>"Answering the question that is asked is the first step. The tougher part is fighting the urge to elaborate on that answer once delivered. I think of it as a “full-stop” approach, requiring disciplined conclusiveness: Listen to the question; answer that question and that question only; full stop; wait for the next question. The strategy has enabled me to break down complicated, weighty issues into “bite-sized” pieces that are more manageable for a kid’s developing brain to process. It gives the child time to digest the information she has heard and come back for more when she is ready. I have been surprised by the number of times Hannah has returned to a conversation out of the blue hours or even days later. I have benefited, too.  This technique enables me to give my kids answers without sharing my emotional baggage. Some of our conversations are fraught with emotional triggers, particularly when my girls have questions about their brother. But answering them directly and honestly and then waiting, sometimes with gritted teeth, for their next one forces me to follow my child’s lead instead of going down the rabbit hole of my own grief."

    The parenting lessons I learned from my dying child - The Washington Post

    This Nursing Professor Is On a Quest to Improve End-of-Life Care, Worldwide | The Amateur's Guide To Death & Dying

    University of Virginia nursing professor Cathy Campbell talks about how end of life care is improving:
    There was always this great tension between compassionate care and the cure, the cure, the cure,” said Campbell, recollecting her early years as a nurse in a Florida Veterans Administration hospital, “and at that point palliative care wasn’t very good, and the things we did to patients weren’t very good for them, either.” 
    While the memories still smart, Campbell’s relieved when she considers the expanse of modern palliative care, and the growing understanding that “there is such a thing as a good death.” 
    But drugs and technologies aside, palliative care remains rooted in compassionate presence. That might mean that light chit-chat, passing ice to the bedridden, or quietly holding a griever’s hand. It also might mean answering loved ones’ frank and probing questions – 
    What does death look like? How do you know if he’s in pain? Does she know we’re here at all? – or recommending medication adjustments for pain, based upon observed distress. Many times, though, Campbell’s just there, palms up, offering herself as a witness and a comfort.

    This Nursing Professor Is On a Quest to Improve End-of-Life Care, Worldwide | The Amateur's Guide To Death & Dying:

    Sunday, June 18, 2017

    “How long have I got, Doc?” Why many cancer patients don’t have answers -

    Some patients approaching the end of life are in denial, assuming that they’ll live much longer than is realistic. Yet doctors often have a far more pessimistic estimate of their life expectancy, said Dr. Robert Gramling, the Holly & Bob Miller chair in palliative medicine at the University of Vermont College of Medicine. In a study published last year in the Journal of Clinical Oncology, only 5 percent of cancer patients with less than six months to live had an accurate understanding of their illness. Thirty-eight percent couldn’t remember ever talking to their doctor about their life expectancy. 
    And in a 2012 study in The New England Journal of Medicine, 69 percent of patients with metastatic lung cancer and 81 percent of people with advanced colorectal cancer thought they could still be cured, although both conditions are generally considered fatal, said study co-author Dr. Nancy Keating, a professor of health care policy and medicine at Harvard Medical School.  
    Such misunderstandings can have profound consequences for patients and their caregivers. Patients who don’t understand how long they have to live often choose overly aggressive therapy that can cause pointless pain and suffering. Nearly one-third of cancer patients end up in the intensive care unit, or ICU, in the last month of life, according to the Dartmouth Atlas of Health Care. Although intensive care can save the lives of younger, healthier people, it doesn’t improve or lengthen the lives of people with terminal cancer.  
    “It’s surprising how many people end up in an ICU, critically ill and dying, without realizing they’re dying,” said Dr. Mark Siegel, a professor of internal medicine and critical care specialist at the Yale School of Medicine. These last-ditch measures to extend life can leave families with extended grief and trauma, Siegel said.  
    Although almost half of Americans use hospice care — which focuses on comfort care at the end of life — studies show that many people enter hospice very late in their illness, often only a week before death. “The real question is, ‘How do these patients become overly optimistic about their prognosis and what part do physicians play in this?’” Siegel said. “What do physicians tell the patients? What are patients hearing?”"

    “How long have I got, Doc?” Why many cancer patients don’t have answers -

    Death Trips | Ann Neumann

    Some people prefer dying along.

    To ward off the specter of elder isolation, we are redoubling our faith in individualism, strangely enough—or more precisely, our conviction that what you choose will be your fate. Bad personal choices get you a lonely death. Good personal choices, on the other hand, get you something like “The Death of Socrates,” that painting by Jacques-Louis David in which attendants throng around the deathbed, contorting their bodies in energetic devotion. (The hemlock may have been bitter, but at least he felt the love.) 
    Feats of self-improvement are what will put you on the path to a worthy end—and these days, those feats include spending money on the very thing that our new service economy is keenest to offer you: customized experiences. A doula-assisted death is a bespoke affair. Through made-to-order rituals, your death can be propelled into the realm of the unique, just like everyone else’s.

    Death Trips | Ann Neumann

    Sunday, June 11, 2017

    My sister made her end-of-life wishes clear. Then dementia took hold

    Honoring the wishes of a woman -- what she wanted when she was well might not be what she wanted when her memory faded and her personality changed.
    I had learned that the light of my sister’s spirit was stronger than her illness. It would survive.  
    In inpatient hospice, we gave my sister liquid with a dropper, squirting it into the back of her mouth. Sometimes, she could take a bit of applesauce on a spoon. We’d wait to hear a gulping swallowing sound. And then, after giving her time to rest, we’d try again. She was fading.  
    Family surrounded her day and night. We never sat down and talked about my sister’s wishes. But they informed what was happening along with another set of wishes, which we all understood but had never been articulated: “Treat me with respect. Be there by my side. Love me. Remember me.”  
     In the end, the feeding tube was a side issue. My sister was dying, one way or another, and nothing could change that trajectory. Her husband and children decided against artificial nutrition or hydration. It was what she’d said she wanted.  
    They don’t regret it. Neither do I. And yet. We didn’t turn away from the feeding tube because of the wishes my sister had laid out earlier. We were honoring both the person she had been and the person she had become by making sure she didn’t suffer unnecessarily. Every step of the way, we let her know her life had value.  
    And when the hard times came, we didn’t duck. We were fully present. My sister passed peacefully last November, surrounded by people she loved. She was 58. When I think of her now, I think of a romantic girl, an exhilarated college student, a striving 20-something, a passionate wife and mother, and a person with dementia whose lust for life and inner light shone all the way to the very end. That light has become a beacon, deepening my sense of what it means to be human and what’s possible at the end of life. I carry it with me to this day.

    My sister made her end-of-life wishes clear. Then dementia took hold

    Monday, June 5, 2017

    The Victorian Cult of Mourning

    No one knew how to grieve like the Victorians. The elaborate and often downright weird rituals of the era – inspired by Queen Victoria who publicly mourned her husband’s death for forty years – provide a fascinating look at a culture for whom death was ever present. In the United States, losses from the Civil War eclipsed 600,000 deaths, or two percent of the entire population. Death was everywhere. Mourning was an art form. Widows dressed in black from head to toe for an entire year. Household mirrors were covered and clocks were stopped when a death occurred. Women created and wore intricate jewelry made from the hair of the deceased. And rural cemeteries were established across America. 
    Green-Wood is one such example, which by the 1860’s drew over 500,000 visitors a year who came to see the cemetery’s collection of ornate monuments and mausoleums. Join us for an afternoon symposium devoted to exploring the arts and culture of Victorian mourning with illustrated talks and show-and-tell presentations of period artifacts. 
    Speakers will include Dr. Stanley Burns, M.D., founder of the Burns Archive of photographic history and professor of medicine and psychiatry at NYU Langone Medical Center, Green-Wood Historian Jeff Richman, Evan Michelson, co-owner of Obscura Antiques & Oddities and host of the Science Channel’s Oddities, funeral director Amy Cunningham, Jessica Glasscock, Research Associate for the Metropolitan Museum of Art’s “Death Becomes Her” Exhibition, and more! 
    This symposium is organized in partnership with Joanna Ebenstein, founder of the former Museum of Morbid Anatomy and Laetitia Barbier, former librarian of the Museum. 

     $20 for members of Green-Wood and BHS / $25 for nonmembers

    'via Blog this'

    Sunday, June 4, 2017

    A Daughter Chronicles Her Parents' Final Months With Cancer : Shots - Health News : NPR

    "I picked up my camera and documented my parents' dual cancer treatments for the next 24 months and our lives as they unfolded. From the seven-hour chemotherapy infusions to running errands with Mom according to her to-do lists, I was there with my camera slung across my shoulder."

    A Daughter Chronicles Her Parents' Final Months With Cancer : Shots - Health News : NPR

    Friday, June 2, 2017

    "The Bright Hour": This year's 'When Breath Becomes Air.' - The Washington Post

    The Washington Post calls The Bright Hour by Nina Riggs, a woman who died of breast cancer at age 39, "a stunning work, a heart-rending meditation on life — not just how to appreciate it while you’re living it, but how to embrace its end, too."

    "Two days before she died, Nina Riggs made a request: Don’t be afraid to read my book. There’s good reason for such a plea. Her book, “The Bright Hour,” is a memoir about the last two years of her life. She completed it in January; she died the next month, at age 39, of metastatic breast cancer....In an email interview from a hospice in Greensboro, N.C., Riggs, who had two young sons, remained remarkably upbeat: “I think a real gift that this experience gave me was forcing me to appreciate my life/death, not just my life. I had to embrace the experience of having cancer, because that experience was part and parcel to my experience of my husband, my kids, my dearest friends. So I would say I really hope the book I wrote will make you feel much more joy than anything else.”
    "The Bright Hour": This year's 'When Breath Becomes Air.' - The Washington Post

    Thursday, June 1, 2017

    Rituals to Express and Process Grielf

    Embracing Personal Rituals

    A while back we asked WYG reader to share their personal rituals on our Facebook. We got so many amazing responses, things that speak to the unique and individual nature of the rituals that mean something to us. I’ve got lots of little ones, like the fact that I never turn down a piece of coconut cake. Whether it’s at a restaurant or a coffee shop, if it’s on the menu I order it. Because coconut cake always reminds me of my dad and family and childhood (even though I didn’t really like coconut cake then) so it is my own little private ritual, that can happen almost anywhere.

    Rituals people mentioned included drinking coffee from a late spouse's mug, celebrating the birthday of a daughter who died at 16 every year by eating her favorite dessert, and wearing the bracelets of a mother who is no longer here to family events she would have loved.

    My Father, Dying by Joyce Sutphen

    My Father, Dying
    by Joyce Sutphen

    It was hard work, dying, harder
    than anything he’d ever done.

    Whatever brutal, bruising, back-
    breaking chore he’d forced himself

    to endure—it was nothing
    compared to this. And it took

    so long. When would the job
    be over? Who would call him

    home for supper? And it was
    hard for us (his children)—

    all of our lives we’d heard
    my mother telling us to go out,

    help your father, but this
    was work we could not do.

    He was way out beyond us,
    in a field we could not reach.

    Thursday, May 25, 2017

    At His Own Wake, Celebrating Life and the Gift of Death - The New York Times

    Mr. Shields intended to die swiftly and peacefully by lethal injection, administered by his doctor. Last June, the Canadian government legalized what it termed “medical assistance in dying” for competent adult patients who are near death and suffering intolerably from irremediable illnesses. When his doctor, Stefanie Green, informed him that he qualified, Mr. Shields felt the first hope since a doctor told him more than a year before that he had a rare and incurable disease called amyloidosis, which caused proteins to build up in his heart and painfully damage the nerves in his arms and legs. 
    Having control over the terms of his death made him feel empowered over the disease rather than crippled by it, a common response among Dr. Green’s patients. Mr. Shields believed that dying openly and without fear could be his most meaningful legacy — which was saying something. The man had packed five lifetimes of service into one: He had been a civil rights activist, a social worker for children, the head of British Columbia’s biggest union and, most recently, the savior of a floundering land trust that included 7,191 acres of protected wilderness and historic properties.  
    His newly developed plan for how he would spend his last moments, though, worried his wife, Robin June Hood. Her husband had not left his bed once since he arrived at the hospice on a stretcher, 17 days earlier. His 78-year-old body had thinned; his voice dimmed. He lasted only 15 minutes in conversation before his eyes fluttered closed. Just leaving the room would exhaust him. She knew he could not make it to the restaurant, and there was no way she could tend to his needs at home, even for one night — especially his last. Happily, Dr. Green had become adept at brokering delicate family discussions over the past year.  She had presided over 35 deaths since the law passed, each intimately different from the next. One man got dressed in his amateur clown costume, complete with wig and red nose, and died telling her jokes. He had insisted on being alone in the room with her, but most of her patients died surrounded by loved ones. Many were too sick to devise elaborate rituals, but others had chosen the location, attendees, readings and music as if planning a wedding. Dr. Green called them something she picked up at a conference on euthanasia in the Netherlands: “choreographed deaths.”
    She arrived at Mr. Shields’s hospice room that day to finalize the plans. The couple held hands as she helped them stitch a compromise. On March 23, the last night of Mr. Shields’s life, they would host a party in the hospice solarium with Swiss Chalet takeout for all. The next morning, he would die in his hospice room. Then, his wife and stepdaughter would take his body home and lay it out in his beloved garden for two days. The plan, Mr. Shields said that afternoon, was “absolutely terrific.”

    At His Own Wake, Celebrating Life and the Gift of Death - The New York Times

    Wednesday, May 24, 2017

    Sheryl Sandberg and Elizabeth Alexander on Love, Loss and What Comes Next - The New York Times

    “When I meet a woman wearing a ring on a chain around her neck, I know immediately: member of the club,” Sheryl Sandberg said. “I never noticed before.” That club in question would be the unenviable one for people whose spouses have died. “What I loved about the chain was that I could put both our rings on it,” Elizabeth Alexander added. But these two club members, who met recently for breakfast, have more in common than jewelry.
    Both are young widows, and both found some comfort in writing about it.  Alexander says, "If you can stay at the bone of what’s true, then that’s your lifeboat."

    Sheryl Sandberg and Elizabeth Alexander on Love, Loss and What Comes Next - The New York Times

    Tuesday, May 23, 2017

    When my dad was dying, we forgot to ask him how he wanted to live | The Independent

     "When it comes to end of life care, we talk about dying. But in my experience, care at the end of life should not be not about death – it should be about life....Professionals arrived to do the job they were sent to do – take bloods, give drugs, request a hospital bed at home. They didn’t take the time to understand that what Dad wanted most was to be outside, to feel the sun, wind and rain on his face. They told us they’d visit sometime the next day. And so we waited. And Dad lost another precious opportunity to be out in the world he didn’t want to leave."

    When my dad was dying, we forgot to ask him how he wanted to live | The Independent

    Monday, May 22, 2017

    Coping With the Death of Old Friends and Siblings as We Age

    In her book, Lots of Candles, Plenty of Cake, author Anna Quindlen captures the significance of these relationships. “The thing about old friends is not that they love you but that they know you,” she writes.  On an intellectual level, I know that part of life is death, yet I struggle to reconcile this unfair, if inherent, consequence. “In the second half of our lives, we experience more losses,” says Alan Wolfelt, an author, grief counselor and founder of the Center for Loss and Life Transition. “With aging comes the inevitable deaths of those we love. It’s hard, yes,” he adds, “but it’s also a time of opportunity to live, love and mourn as fully as we can.” 

    Coping With the Death of Old Friends and Siblings as We Age: