Sunday, January 31, 2016

The 3 best things to say to someone grieving a death

"Death makes us very uncomfortable and often leaves us at a loss for words before, during or after a funeral or memorial service. Below, you will find three meaningful, uplifting expressions of sympathy to help you sincerely express your condolences and offer genuine comfort to someone grieving the death of a relative or friend."  Encourage them to talk about the person who died.  Tell them you love them.  And just listen.

The 3 best things to say to someone grieving a death

New Trends in Death Care

Death as a Spiritual Experience | Tricycle

"Yes, it’s not an oxymoron to talk about healthy dying. People who work with the dying, even the acutely dying—I work in an intensive care unit—can discover some quality of healing during the dying process. Not that people are ever happy that their loved one is dying, but you can see a greater connection between family members, a sense of real support and lovingkindness resolving some conflicts....All of us get so distracted by the many lists of things that we have to do and are so pressured by all the different forces of relationships and expectations in our life that we lose track of what really makes us happy, brings us joy, and is important. Reflecting on death can sometimes help us see more clearly what’s important and what’s not. It’s a practice that can help us be able to experience more directly—and remind ourselves—what our real priorities are. "

Death as a Spiritual Experience | Tricycle

The Dear Abby of Death - The New York Times

"As a paid blogger for, Ms. Isaacs writes Sincere Condolences, an advice column on death-related issues, and Widow in the World, which also offers advice.

“I don’t know why I’m drawn to the dark side,” said Ms. Isaacs, who herself is a widow and whose columns follow a question-and-answer format. “Most of what I write comes from my own life experience, because I’ve been through it.”

The Sincere Condolences column touches on subjects ranging from suicide to stationery. She writes about mourning, grief, memorial services and other topics. "

The Dear Abby of Death

Dying with dignity with dementia

: "Choosing when to go is a common conversation for baby boomers as we move into our final decades. I’m always quick to say that I never want to move to a nursing home, and will take steps to end my life at a time of my choosing should I ever find it not worth living. Such decisions seem relatively uncomplicated when I contemplate being given a terminal diagnosis late in life or being told that I have a disease like motor neurone disease [ALS].

But many of us will not be given such a diagnosis. Dad slipped into increasingly obvious dementia over ten or so years. It’s hard to know what he perceived about his decline. He never talked about ending his life. He had many long hours of joy in the years he lived with his deterioration. He certainly died with dignity, but it could have easily been different.

The gradual but very unpredictable realities of cognitive decline are one of the most challenging that anyone open to ending their own life will face."

Dying with dignity with dementia

Last Cab to Darwin 2015 Film Trailer

Hospice is not only for the patient but also the family

"One misconception about Hospice is that it's strictly for the patient. It is for the patient but it is also for the patient's family.

Hospice has a bereavement program, which also helps children, in the schools."

Hospice is not only for the patient but also the family

Friday, January 29, 2016

Brené Brown on Empathy

Empathy does not begin with "at least." Don't "silver lining" it.

At Their Request, There Will Be No Service | Eunice Friesen | TEDxGrande...

Unfathomable Life: A Writer Grieves for Her Father, Through Five Movies | MZS | Roger Ebert

In this moving essay, Jessica Ritchey writes on about mourning her father through a year of movies.

"It’s not quite a year yet. I’m not ready for it to be a whole year yet, because while “time heals all” is a filthy lie, distance fades the details. 
I don’t want to forget the smell of his aftershave, or the Tony Hillerman novels on his bookshelves. Or the fact that “Star Wars” was one of his favorite movies. "

Unfathomable Life: A Writer Grieves for Her Father, Through Five Movies | MZS | Roger Ebert

Thursday, January 28, 2016

Knowing the Right Prayer | Tricycle

A beautiful meditation on loss and grief.

"Twenty-three years later on those gray mornings after Julian’s death I listen to Stephen and Ondrea speak to me through recorded video clips. Each of them is sick and each of them is a patient and a caregiver. I hope for something. I hope for some kind of gazing, or weeping, or revolving. Some kind of falling in love. What I find is my loss, my parting. It’s a confirmation of sorts. 

I find that the dying are not to be pitied or envied. Stephen and Ondrea teach me this. They teach me their petition, their morning prayer: please, whoever is listening, protect my beloved from being alone. 

It is a petition for the gift of dying. Not for oneself but for the one I hold closest. 

They teach me in those mornings after Julian is gone that while everything feels so horribly wrong, everything has turned out perfectly. That the only prayer worth praying has already been answered for me."

Knowing the Right Prayer | Tricycle:

Kahlil Gibran on love and loss

"When you part from your friend, you grieve not; For that which you love most in him may be clearer in his absence, as the mountain to the climber is clearer from the plain."

Wednesday, January 27, 2016

Hey Funeral Directors, Get the Hell Out of the Way! | The Order of the Good Death

I love this description of different ways that this funeral director worked with families to make the funeral process individual and meaningful, like this one:

A family came to me recently after they lost their son in a tragic accident. All they wanted was to create some kind of meaning in the face of the total chaos of emotion that they were swimming through. They had gone to another low cost funeral home that had no interest in listening to the family’s questions or entertaining any kind of notion out of the standard operating procedure: pick-up, cremate, return ashes.

The family only had a couple of needs: They wanted to be sure they got their son back from the mysterious cremation process, and they wanted to make the container that he was going to be cremated in. It wasn’t a very tall order – they just needed us to walk them through the exact process of identification, transport and cremation, so they could have the assurance that at every point there was a procedure to identify him. The family did not want to use the cardboard container used for most cremations, as they strongly felt their son needed something more personal. After 45 minutes of brainstorming options the dad came up with a brilliant idea – he was going to handcraft a surfboard shaped cremation tray. The family could come together to decorate the surfboard and write messages on it. What they came back with was beyond my wildest expectations. It was a beautifully handcrafted surfboard that was perfect to be used as a cremation tray. It was decorated with as much precision, love and care as anyone could ever muster and it was covered in loving handwritten messages to send him off on his next journey. This wasn’t another numbered body being shuttled into the cremation chamber, this was a life cut way too short, and he was riding a stunning example of craftsmanship and dedication on a wave of love to the other side.

Hey Funeral Directors, Get the Hell Out of the Way! | The Order of the Good Death

David Kuhl Reflection | Talking to a Dying Parent

"[C]onnecting deeply with loved ones, particularly children, is one of the most important things to people at this stage of life. "It's the responsibility of the parent to make sure their child is heard and seen when they are young," Kuhl says. "And as parents grow old, they want to be heard and seen. People would say to me after we'd spend time together, 'I only wish I had told this story to my children, because they don't really know me and I don't know them. And I'd like to hear their stories, too.'"

Even children who spend a lot of time with dying parents often find it difficult to talk to them on an other than "mundane, day- to-day basis," says Kuhl. And terminal illness can exacerbate this because parents and children often try to hide the truth about the illness from each other, further hampering the possibility of an honest discussion. "We start taking care of each other through a conspiracy of silence," Kuhl says, "and that doesn't serve us well."

If it feels awkward to start a conversation, he says to begin by admitting that. "Say 'Mom (or Dad), I really want to know you better and I'm not even sure how to begin,'" Kuhl says. Then start at the beginning, talking about her early childhood and working through her life and up to broader questions such as: "What's been most meaningful in your life? What's been most challenging? What are you sorry about? What was the funniest stuff? When did you have the most fun in your life?""

David Kuhl Reflection | Talking to a Dying Parent:

How to Say Goodbye | Saying Goodbye to a Dying Loved One

Very good advice: just be present, follow their lead, say it now.

"Saying good-bye to a dying relative or friend -- what to talk about, when, and how -- doesn't come naturally to most adults. The irony: All such conversations ask of us, ultimately, is what people appreciate hearing at any time of life: words of candor, reassurance, and love.

Below, those who've been through the experience of saying good-bye share what felt right to them -- and what they wish they'd done differently."

How to Say Goodbye | Saying Goodbye to a Dying Loved One

Mother Jones Cover Story: My Right to Die

Diane Rehm’s next act: Using her famed voice to fight for the good death - The Washington Post

"Her new memoir, “On My Own,” recounts her husband’s decision to end his life in June 2014 after his physician was legally barred from helping. Diagnosed with Parkinson’s disease in 2005, and after two years in an assisted living facility, John Rehm refused food, liquids and medication.

It took 10 days to die, an eternity.

“I rage at a system that would not allow John to be helped toward his own death,” Rehm writes of watching her spouse of 54 years wither away.

[Review: In “On My Own,” Diane Rehm argues for the right to die.]

The experience sparked her advocacy in the right-to-die movement. “I feel the way that John had to die was just totally inexcusable,” she told The Washington Post last year. “It was not right.”

Her public stand, and a commitment to host three dinners for the organization Compassion & Choices, which advocates for legalizing physician-assisted suicide, resulted in an admonishment from a room full of station and NPR brass. Rehm is supposed to moderate news issues, not make them.

“I was annoyed,” Rehm recalls of the experience. “Political issue or not, it’s also an extraordinarily personal one to me because of John.”"

Diane Rehm’s next act: Using her famed voice to fight for the good death - The Washington Post:

A Matter of Death and Life - High School Students Take a Hospice Class

"After the experience of opening up and coming together, Kane begins the hands-on training needed for hospice care: positioning residents in bed to make them comfortable (as part of the hospice philosophy, they don’t call them patients); changing the bed while the resident is in it; sponge-bathing, showering, feeding, hydrating, and applying lotion to delicate skin.

At that point, the students begin to visit one of four hospice houses that have signed up for the program. Rochester has more two-bed hospice homes than any other city in the U.S. Under state law, hospice homes with only two beds are allowed to operate as homes, not hospitals. Add another bed and it becomes a legislated health-care facility, and the cost per bed jumps from $100,000 a year to $175,000 a year because of the need for full-time nursing staff. Two-bed hospice houses can run with one director, volunteers who come on two-person shifts from morning to night, a paid nursing assistant who stays overnight, and an on-call nurse who comes when needed, such as to confirm a death.

The students sign up for shifts—there’s no set number they need to fulfill, but some become so dedicated, they elect to put in hundreds of hours. At that point, the classes at school become a forum where the students can share and process their experiences.

As she prepares to graduate, Carolyn Rumrill, 18, says she has learned to see the big picture: “At this stage, we’re expected to figure out our lives— where we’ll go to school next year. You need to do well in extracurricular and academics, so it’s really self-centered right now. This course moves you away from that. It’s not all about you. There are many aspects to life, so don’t freak out about every little thing. I also feel like I’ve become more attuned to listening instead of speaking.”"

A Matter of Death and Life - Mindful:

10 Things You Can Do To Create The Life You Want After Any Loss

Be open to the unknown, to ambiguity, to gratitude.  Kristin Meekhof writes on about what you can do to establish a sense of control and purpose after a devastating loss.

"Observe your thoughts. Begin to monitor this. Don’t judge your thoughts, just observe. Our thoughts influence our actions. And many times, we are unaware of what we are thinking until we begin to observe our thoughts. You may be in the habit of negative self talk, and you don’t even realize that you engage in this behavior several times a day. You can’t change something that you are not aware of, so getting an accurate picture of your thoughts is important.

10 Things You Can Do To Create The Life You Want After Any Loss

Tuesday, January 26, 2016

David Bowie and the Rise of the Grief Police - The Atlantic

"Grief, in the popular imagination, is a sadness to be experienced and carried and borne as silently and as stoically as possible. And yet mourning, too, has a public face: condolences, wakes, the sharing of memories and sympathies. That juxtaposition leaves many confused about how to celebrate the dead, how to comfort the living—how, in short, to grieve together. “Rituals used to help the community by giving everyone a sense of what to do or say,” Meghan O’Rourke puts it in her magisterial memoir The Long Goodbye. “Now, we’re at sea.”

One recent consequence of that collective drifting, especially as the confusion expands to digital platforms, is the rise of grief policing. The notion that there is but one way to grieve, and that deviation from that way is wrong. The tendency to tell mourners that, essentially, they’re mourning too much, or not enough. The desire to restore order to a practice that has become, culturally, chaotic."

David Bowie and the Rise of the Grief Police - The Atlantic

Claire Fallon on Virginia Woolf's Guide To Grieving

"My mother's death unveiled and intensified," she wrote, "made me suddenly develop perceptions, as if a burning glass had been laid over what was shaded and dormant." How rawly one remembers those days, as if any membrane between the world and you has been ripped away, while the memories of the mother you loved begin immediately to slip through your fingers.

"There is the memory," she wrote," but there is nothing to check that memory by; nothing to bring it to ground with ... the elements of [her] character ... are formed in twilight."

She struggled to piece together her mother by tracing her biography, the men she loved, the people who loved her, the jumbled memories Woolf herself retained. When you lose your mother before you're able to see her clearly, as a person, finding out who she is becomes a treasure hunt, a research project, a detective expedition.


Virginia Woolf's Guide To Grieving

I adopt 'hospice babies' no one else wants; here's why -

 "We invest deeply, and we ache terribly when these kids die, but our hearts are like stained-glass windows. Those windows are made of broken glass which has been forged back together, and those windows are even stronger and more beautiful for having been broken."

I adopt 'hospice babies' no one else wants; here's why -

A Reflection on an Autumn's Day | | Poetic Expressions

"I took up a handful of grain and let it slip flowing through my fingers, and I said to myself

'This is what it is all about. There is no longer any room for pretence.  At harvest time the essence is revealed - the straw and chaff are set aside, they have done their job.  The grain alone matters - sacks of pure gold.

So it is when a person dies the essence of that person is revealed.  At the moment of death a person's character stands out happy for the person who has forged it well over the years. Then it will not be the great achievement that will  matter, nor, how much money or possessions a person has amassed.  These like the straw and the chaff, will be left behind.  It is what he has made of himself that will matter.  Death can take away from us what we have, but it cannot rob us of who we are.

A Reflection on an Autumn Day"

A Reflection on an Autumn's Day | | Poetic Expressions

Atul Gawande's Late Life: How to Have a Good Life to the End

Dr. Atul Gawande, author of “Being Mortal,” shares his vision of healthcare that helps people live well to the end in "Late Life."

Monday, January 25, 2016

'Today We Are His Family': Teen Volunteers Mourn Those Who Died Alone : NPR

 "The students, dressed in jackets and ties, carry the plain wooden coffin, and take part in a short memorial. They read together, as a group:

"Dear Lord, thank you for opening our hearts and minds to this corporal work of mercy. We are here to bear witness to the life and passing of Nicholas Miller.
"He died alone with no family to comfort him.
"But today we are his family, we are here as his sons
"We are honored to stand together before him now, to commemorate his life, and to remember him in death, as we commend his soul to his eternal rest."
Each of the young men in turn read a poem, verse of scripture, or passage about death. Emmett Dalton, 18, reads "A Reflection On An Autumn Day," which ends "death can take away what we have, but it cannot rob us of who we are."


'Today We Are His Family': Teen Volunteers Mourn Those Who Died Alone : NPR

5 things you should know about Medicare's new end-of-life discussions | PBS NewsHour

The suggested topics in this article, provided by The Conversation Project, cover everything from concerns about comfort, being able to be there for milestone events, and making sure your affairs are in order.

"End-of-life discussions with your physician or other licensed caregiver are now being paid for by Medicare — one of the program’s major consumer changes taking effect this year. Thinking and talking about your wishes and the kind of health care you want to receive at the end of your life are probably not at the top of your bucket list, or anywhere close, but such discussions could be very important."

5 things you should know about Medicare's new end-of-life discussions | PBS NewsHour

Sunday, January 24, 2016

The Final Hours Before Death | Barbara Karnes Books, Inc.

How to help at the end of life.

"I have noticed concern by medical workers as to what to do during the
hours to minutes before death. Here are some ideas to consider.
When the patient is hours to minutes before death they may be
experiencing some or all of the following things. Not responding to the
environment, mottled, breathing irregular, maybe breathing like a fish, slight
agitation, murmuring words but not making sense. Family and significant
others are gathered in anticipation of death occurring soon.
What do we as professionals do to assist the family in having a positive

I especially like these ideas:

* If labor (those hours before death) becomes long I would encourage the
family to share stories, look at scrapbooks, and reminisce while in the
room. Have a normal, natural family gathering.
* Explain that we have some control over the time that we die. If you are
with someone when they die you are there because they want you there.
If you are not, even while you tried to be, then know you were given a gift
of love and protection.

The Final Hours Before Death | Barbara Karnes Books, Inc.

Unequal Lives, Unequal Deaths - The New York Times

 "Death may be humanity’s great equalizer, but the inequalities suffered in life – leading to a shorter life expectancy – become inequalities in the experience of dying as well.

When I began my career, I had naïvely assumed that, if time were short, who wouldn’t prefer the familiarity of home and palliative medicine’s focus on quality of life to the chaotic mess of the hospital? But I’ve learned that even when my patients accept hospice services, the proverbial “good death at home” is often out of their reach. Fully experiencing the benefits of home hospice requires resources: involved, dedicated family members. Money to afford caregivers, particularly in the absence of involved family members. A neighborhood whose local pharmacy actually stocks opiate medications for severe pain. Insurance that covers stays in nursing homes so that family members can simply be family members instead of caretakers.

Without these luxuries, which so many others take for granted, dying at home could actually be less comfortable than dying in the hospital. Over this past year, I have stepped across the wide gap between my idealistic conception of hospice care and the reality of providing it amid life circumstances that shape the circumstances of dying."

Unequal Lives, Unequal Deaths - The New York Times:

The Difference Between Care & Caring

How the digital age has changed our approach to death and grief

"In the 20th century, many people actually valued the privacy that removed their dying or grieving from the sight of others. Visibility, offline or online, creates the possibility of support, but it also requires the sufferer to put on a public face which may not mirror their internal torment.

Visibility also increases the chances of unhelpful comments and even censure. This is apparent in grieving, where mourners may be criticised for grieving too much or too little, too long or not long enough, for being too stoical or too expressive. Facebook, with its upbeat ethos, may not be where young people dying of cancer want to share their worst fears and deepest anxieties.

In the US, split between religious conservatism and liberal humanism, people’s very different ways of dealing with suffering and finding hope in mortality might once have stayed within their communities. But in the borderless online world they bang up against each other, often adding to the suffering. Fundamentalist sites discussing euthanasia or post-abortion grief can be profoundly unhelpful to those seeking advice and counsel. Liberal humanist sites may not be welcomed by some who are religious and after pastoral help.

This is why online groups restricted to particular age groups with particular conditions or particular religious beliefs, can be valuable. But online sites run by people living with certain life-threatening conditions – notably depression and anorexia – can disturb friends and family. Such sites may even embrace suicide pacts or a pro-anorexia ethos, and may get shut down, adding to their members' feeling not being understood.


How the digital age has changed our approach to death and grief

Saturday, January 23, 2016

Rumi on Sadness

“The wound is the place where the Light enters you.” 
― Rumi

Friday, January 22, 2016

Atul Gawande | JAMA | Quantity and Quality of Life:  Duties of Care in Life-Limiting Illness

Atul Gawande's article is one of the best I have read:

"Although the experience is woefully understudied, a significant body of evidence is emerging to guide clinicians, health systems, and society toward better practices for people facing serious, life-threatening conditions.

That evidence has shown, importantly, that the amount of suffering that people endure in their last year of life is considerable. Singer et al1 recently reported on the experience of 7204 adults older than 50 years who died while being followed up as part of a longitudinal study of US health and retirement. The researchers found that, during their last year, 51% of study participants were often troubled by moderate to severe pain, and 46% to 53% also experienced at least a month of depression, periodic confusion, dyspnea, and incontinence during that time. Furthermore, among those who died between 1998 and 2010, none of these symptoms decreased in occurrence during their last year of life, but rather occurrence of pain, depression, and periodic confusion actually increased. Medical care for the symptoms people experience at the end of life does not seem to have gotten better; it may have gotten worse.

It could be argued that the findings simply reflect people following their wishes to trade the quality of their lives for therapies that extend their lives. But this is not the case. In 2014, the Institute of Medicine (IOM) published Dying in America, which included an extensive review of the medical literature on the end of life, including the efficacy of expert palliative care. Palliative care is a field dedicated to assisting seriously ill people with setting and achieving goals aside from just survival, which may include control of symptoms, attending to life projects, connecting with loved ones, or other vital objectives. The literature has established that when care is provided with a narrow focus on disease control, without palliative care expertise directed at eliciting these broader goals and tailoring care to include them, patients experience more pain, more anxiety, and more family exhaustion; they receive more nonbeneficial care and more hospitalization; and they do not live longer. Indeed, studies suggest that earlier involvement of palliative care specialists, either through consultation or enrollment in hospice, can produce increased survival." [footnotes omitted -- see original for citations]

JAMA Network | JAMA | Quantity and Quality of Life:  Duties of Care in Life-Limiting Illness

Movie of the Day: After Life (1998) | armchaircinema

 "It is probably safe to say that very few films these days know very much about real life. Safer to say that most films these days know even less about the nature of death. A lot of movies about death are more interested in the celestial wallpaper. The afterlife on film is usually a perspective on what Heaven and Hell might look like and those who die are usually more interested in tying up romantic loose ends or returning to unfinished business. Very few films have ever matter-of-factly considered the afterlife from the point of view of the traveler who has crossed the threshold to the undiscovered country.

Hirokazu Koreeda’s Afterlife is almost alone in it’s contemplation on the importance of the single moment or moments that shape our humanity. In 1999, Koreeda created this absolutely beautiful examination of the stopover between life and death where the choice of a lifetime must be made: What single memory would you carry with you to your eternal reward? The examination is vessled by 22 travelers who, for various reasons, have died and arrive from a white light to a place that is neither here nor there. They are in a way-station between the end of life and their eternal lodgings. The counselors who work here meet and interview several recently dead people each week. The travelers are tasked with choosing one memory from a lifetime that they will carry over into the eternity that awaits them. Once a memory is selected it will be turned into a film and screened before the patron vanishes with the memory, all other memories having been eliminated."

Movie of the Day: After Life (1998) | armchaircinema

How Doctors Die | HMS

"On three of five measures of the intensity of end-of-life care, physicians received significantly fewer intensive interventions than the general population.

Overall, physicians were less likely to die in a hospital compared with the general population (27.9 percent vs. 32 percent, respectively), and during the last six months of life they were less likely to have surgery (25.1 percent vs. 27.4 percent) and less likely to be admitted to the ICU (25.8 percent vs. 27.6 percent).

The study was led by Harvard Medical School researchers from the Center for Surgery and Public Health (CSPH) at Brigham and Women’s Hospital. The findings appear in the January 19 issue of JAMA, in a special themed issue focusing on end-of-life care.

“Our analysis confirms what we’ve long speculated, which is that physicians, who are more likely to have first-hand experience with the burdens and futility of end-of-life care, are less likely to have surgery or be admitted to the ICU during the last six months of life, or to die in the hospital,” said Joel Weissman, deputy director and chief scientific officer at CSPH and associate professor of health care policy at Harvard Medical School."

How Doctors Die | HMS

Man finds calling as hospice nurse after wife's death - Baltimore Sun

"Hospice care is about providing comfort at the end of life, and O'Malley knows that what he does helps ease the suffering of his patients and the burdens of their families. It wasn't that long ago that he was on the receiving end of that comfort and support when his wife was in the end stages of cancer. The nurses at Gilchrist Hospice Care's Towson inpatient center not only attended to her physical and emotional needs, they cared for him and helped him prepare for her dying.

He was so impressed and inspired by the experience that he began taking classes to become a nurse two months after his wife died in late 2010.

Five years later, O'Malley is dispensing the same compassionate care to dying patients and their families that he received; easing pains both literal and figurative, transforming death from a dark and frightening experience into a peaceful and sometimes even spiritual one."

Man finds calling as hospice nurse after wife's death - Baltimore Sun:

Thursday, January 21, 2016

Eva Saulitis Wrote About Dying

Charles Wohlforth described Eva Saulitis, who wrote about dying:
Writer Eva Saulitis composed her progress toward death as gracefully as one of her poems, right up to her last breath, which she breathed with her family at home in Homer [Alaska] on Saturday afternoon. 
Saulitis, 52, wrote in ADN’s We Alaskans about her approaching death from breast cancer in September and in a book she finished on the subject, titled “Becoming Earth,” to be published by Boreal Books. 
She even wrote about helping create her own coffin, a basket woven by family and friends from tree branches and other materials they contributed. 
“What at first felt strange became natural, to be doing this weaving together of a casket,” she wrote. “It's what's been asked of us, of my family, it's what I've asked of them, and they've said yes. They've said yes to living my dying with me, until I turn off the trail for the last part of the journey, which can only be taken alone." 
I met Saulitis in 2005 while I was working on a book about Prince William Sound. Her husband, Craig Matkin, an orca whale biologist, took me along on a research cruise to meet up with whales congregating there. The crew turned out to be just the three of us, and I ended up writing more about Saulitis than about the whales. 
Her openly expressed spiritual connection with the place demonstrated what I wanted to say. I was looking for a way to show how these places matter to us. Saulitis was brave enough to declare, in poetry, essays and her scientific work, that the mountains, the depths and the whales swimming among them had deep, mysterious meaning, importance beyond their physical value.

Monday, January 18, 2016

In India, Dispensers of Balm Travel to Death's Door - The New York Times

Volunteers like Upasarna are the linchpin in Kerala’s palliative care system — one that was singled out as “a beacon of hope” in The Economist’s “Quality of Death” study in 2010. Kerala’s achievement is especially significant at a time when richer Indian states and wealthy countries like the United States are struggling with the same challenge: How can health systems offer the possibility of a dignified death to everyone? Most people want to die the same way — pain-free and at home, surrounded by family. But in reality, most people in high-income countries die in a hospital, while in many lower-income countries they suffer in pain without medicine or facilities....In “Being Mortal,” a manifesto on how to take care of patients at the end of life, Dr. Atul Gawande, a physician and journalist, writes: 
“The only way death is not meaningless is to see yourself as part of something greater: a family, a community, a society. If you don’t, mortality is only a horror.”
For families like the Karathattyas, it is the ability to live together, sharing occasions like the Muslim festivals of Eid with their friends and serving snacks to their neighbors, that make the heavy shadow of illness and death more bearable. Rather than being a moving hospital, the little van that comes to their house every month is a reminder that they’re not suffering alone. 
“There’s always pain,” Karathattya said, leaning back on his bed. “But there’s always happiness.”

In India, Dispensers of Balm Travel to Death's Door - The New York Times

A thank you letter to David Bowie from a palliative care doctor

A palliative care doctor uses David Bowie's music -- and his death -- to talk to his patients.

"I am a palliative care doctor, and what you have done in the time surrounding your death has had a profound effect on me and many people I work with. "

BMJ Blogs: BMJ Supportive & Palliative Care » Blog Archive » A thank you letter to David Bowie from a palliative care doctor

8 simple words to say when when someone you love is grieving (and not "Everything happens for a reason"

Some things in life cannot be fixed. They can only be carried.

"Grief is brutally painful. Grief does not only occur when someone dies. When relationships fall apart, you grieve. When opportunities are shattered, you grieve. When illnesses wreck you, you grieve.

Losing a child cannot be fixed. Being diagnosed with a debilitating illness cannot be fixed. Facing the betrayal of your closest confidante cannot be fixed. These things can only be carried.

Let me be clear: If you've faced a tragedy and someone tells you in any way that your tragedy was meant to be, happened for a reason, will make you a better person, or that taking responsibility for it will fix it, you have every right to remove them from your life."

The eight words: I acknowledge your pain. I'm here with you.

8 simple words to say when when someone you love is grieving.

"Message From A Dying Friend" - a poem by Jeff Foster about finding Ligh...

Sunday, January 17, 2016

What doctors don’t learn about death and dying: Atul Gawande

"We had no difficulty explaining the specific dangers of various treatment options, but we never really touched on the reality of his disease. His oncologists, radiation therapists, surgeons and other doctors had all seen him through months of treatments for a problem that they knew could not be cured. We could never bring ourselves to discuss the larger truth about his condition or the ultimate limits of our capabilities, let alone what might matter most to him as he neared the end of his life. If he was pursuing a delusion, so were we. Here he was in the hospital, partially paralyzed from a cancer that had spread throughout his body. The chances that he could return to anything like the life he had even a few weeks earlier were zero. But admitting this and helping him cope with it seemed beyond us. We offered no acknowledgment or comfort or guidance. We just had another treatment he could undergo. Maybe something very good would result.

We did little better than Ivan Ilyich’s primitive nineteenth-century doctors — worse, actually, given the new forms of physical torture we’d inflicted on our patient. It is enough to make you wonder, who are the primitive ones?

Modern scientific capability has profoundly altered the course of human life. People live longer and better than at any other time in history. But scientific advances have turned the processes of aging and dying into medical experiences, matters to be managed by health care professionals. And we in the medical world have proved alarmingly unprepared for it.

As recently as 1945, most deaths occurred in the home. By the 1980s, just 17 percent did.

This reality has been largely hidden, as the final phases of life become less familiar to people. As recently as 1945, most deaths occurred in the home. By the 1980s, just 17 percent did. Those who somehow did die at home likely died too suddenly to make it to the hospital — say, from a massive heart attack, stroke or violent injury — or were too isolated to get somewhere that could provide help. Across not just the United States but also the entire industrialized world, the experience of advanced aging and death has shifted to hospitals and nursing homes."

What doctors don’t learn about death and dying |:

I Know You Love Me — Now Let Me Die | Louis M. Profeta MD | LinkedIn

[W]e became blinded by the endless tones of monitors and whirrs of machines, buzzers, buttons and tubes that can add five years to a shell of a body that was entrusted to us and should have been allowed to pass quietly propped up in a corner room, under a window, scents of homemade soup in case she wanted a sip.

You see now we can breathe for her, eat for her and even pee for her. Once you have those three things covered she can, instead of being gently cradled under that corner window, be placed in a nursing home and penned in cage of bed rails and soft restraints meant to "keep her safe."
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 | Louis M. Profeta MD | LinkedIn

Saturday, January 16, 2016

We all have that impulse to help (and we should ignore it) - Refuge In Grief

"My job is to tolerate my own helplessness in the face of her pain, without trying to relieve that helplessness by offering platitudes or false comfort.

My job is to know that showing up, being present, acknowledging the truth that this hurts, this hurts, this hurts is the best way I can love my friend.

And this is what we most want, isn’t it? That our friends and family members, the ones who most want to love and support us – we want them to be willing to feel their own helplessness. To learn to tolerate it, not act out of it.

We want them to stand beside us, not trying to fix what cannot be fixed, not trying to rush us out of our grief. We want them to stand there, without flinching, and acknowledge what is true: this hurts. This hurts. I’m here.


'we all have that impulse to help (and we should ignore it) - Refuge In Grief

No, You Don’t Need ‘Closure’ - WSJ

 "The reality is that closure is a myth. My personal and professional experience with those who have lost friends and family, including children, has taught me that going on with life is not the same as gaining closure. The wound of loss is a part of each person’s life forever. We continue to think about those dear to us, though perhaps not every day or with the same intensity. Recollection is sometimes provoked by a date on the calendar or, less predictably, by a sight, sound, aroma, melody or place that evokes the missing person."

No, You Don’t Need ‘Closure’ - WSJ

One Washcloth: To Care for Loved Ones After Death

I was very moved to learn about One Washcloth, a group founded by registered nurses that provides a simple washcloth as a way to help loved ones care for someone who has died.  Here is one story:

My mother had been ill for months and, as she approached her last days, I was hoping for a way that would allow my five siblings who hadn’t been a part of her care, to connect with her and each other. Not many of them had visited regularly, perhaps believing that she would rebound, that there was more time, that maybe she would never die. I thought of One Washcloth and Lynn delivered one right away. Just holding it in my hands, I felt the weight of my mother’s impending death. I wasn’t sure how I would use it, or how it would be received, but the day before my mother died, somehow all of my siblings were able to find their way to her bedside to say good-bye. At first she was restless and we took turns helping her sit up; one supporting her back and two by her sides. Eventually, she lay down and each of us, and our spouses and her grandchildren, told her we were okay and that it was okay to let go. Her shoulders visibly relaxed. The next morning, she left us and everyone assembled once again at her bedside in stunned silence. I told everyone about the washcloth and, while they were absorbing its purpose, I asked a nurse if she could bring us some water so we could wash our mother’s face and hands. She brought us some water and rose petals. I dipped the washcloth into the water and held it out to the room. One by one, each of my siblings lovingly stroked her hands and face. Some were hesitant, but by the time we were done, everyone had taken part. We sprinkled her bed with rose petals. My mother didn’t like people to fuss over her, but on this day we did and even joked that there was nothing she could do about it. It was a simple cloth and a simple gesture, but it brought meaning and dignity to our last moments with her.

Friday, January 15, 2016

My Right to Die: Assisted Suicide, My Family, and Me | Mother Jones

A thoughtful story from the son of a man who chose to take his own life.

During a career that lasted more than three decades, he had watched all too many of his patients struggle with their final months, and this experience had persuaded him that he would take his own life if he found himself dying of an agonizing and clearly terminal illness. Now he was. Finally, on the evening of January 29, he stumbled and fell during the night, and decided his time had come: He was afraid if he delayed any longer he'd become physically unable to remain in control of his own destiny.

My Right to Die: Assisted Suicide, My Family, and Me | Mother Jones

How a Scientist Couple Chose to Die

"As you all know, I am not afraid of dying but I am dead scared of incompetence."

Julia Medew on The Big Sleep

My Marriage Didn't End When I Became a Widow - The New York Times

 "The transition from married to bereaved was disorienting. At first I could scarcely grasp what widowhood meant; I was too busy looking for ways to comfort Paul even after he died. When the funeral home asked me to bring a set of clothes for Paul to be buried in, I wore them first, thinking I will make these clothes warm and redolent of us. I put a pair of our daughter’s socks in his pants pocket. On the day of the burial, I stepped out from the procession and moved ahead of the pallbearers, compelled to lead his coffin down the hill. I can’t take your hand, but I will guide you; you will not go alone. For several months, I slept with my head on the pillow he had died on, left his medications in their drawer, wore his clothes to bed. Still today, months after his death, I go and sit at his grave, absent-mindedly stroking the grass as if it were his hair, talking to him using nicknames only he would understand."

My Marriage Didn't End When I Became a Widow - The New York Times
The recent changes in the Medicare reimbursement policy provide an opportunity for more clinicians and patients to engage in end-of-life conversations. However, many people are confused about where to start.
Whether you are uncertain about the new rules for CMS reimbursements, or about starting those conversations with patients, this call series will serve as your resource on understanding this new landscape for end of life conversations.
This call series will provide guidance from leaders in the field on how they are making sense of the new policies, engaging with patients around end-of-life care planning, and stewarding the information reliably across the continuum of care.​​​​​​


  • What has changed with CMS reimbursements and what it means
  • How to bill to CMS
  • Effective strategies for where to start
  • How to train and engage staff
  • Tools and principles for having the conversation with patients


  • Physicians
  • Nurses
  • Nurse Managers
  • Social Workers
  • Physician's Assistants
  • Geriatric Specialists
  • Office Managers

Disappearing Fathers by Faith Shearin

Sometime after I turned forty the fathers from my childhood
began disappearing; they had heart attacks
during business dinners or while digging their shovels
into a late April snow. Some fathers began forgetting things:
their phone numbers, which neighborhoods belonged
to them, which houses. They had a shortness of breath,
the world’s air suddenly too thin, as if it came
from some other altitude. They were gone:
the fathers I had seen dissecting cars
in garages, the fathers with suits
and briefcases, the fathers who slipped down
rivers on fishing boats and the ones
who drank television and beer. Most of my friends
still had mothers but the fathers
were endangered, then extinct.
I was surprised, though I had always known
the ladies lasted longer; the fathers fooled me
with their toughness; I had been duped
by their jogging and heavy lifting, misled
by their strength when they slapped
me on the back or shook my hand. I kept imagining
I would see them again: out walking their dogs
on the roads near my childhood house,
lighting cigars on their porches, waving to me
from their canoes while I waited on shore.

Thursday, January 14, 2016

Rudraksha (Prayer Beads) — Mindy Stricke

Mindy Strike is beginning a new series of photographs and interviews about grief.  The first is with Sharada Eswar, about her father's death 16 years ago.

"In Hinduism, there are many ceremonies that take place during the 13 days after a death. My mom's older sister, who was with us throughout that period, is very traditional, and had a beautiful way of explaining the rituals and the stories behind them. Death is such a strange thing that even if you consider all of these rituals as old grandmothers’ tales, you still want to do them when something happens to you personally.

It was all about my dad's soul reaching moksha—not exactly heaven, but a safe place—and you want to do everything to insure that happens. For instance, on the 13th day, one makes donations. Some of them are symbolic, like you're supposed to donate a cow. And you do that because it's a long journey from this world to that world, and the soul has to to be nourished, and the cow is a provider of food.

Another example, on the 9th and the 10th day is when people come and visit you, and they wail loudly, I mean it's almost like Greek keening. At first it sounds irritating, but then it becomes comforting. Just being together. Though I think some part of you wants to be alone, there's also a part of you that doesn’t."

Rudraksha (Prayer Beads) — Mindy Stricke

Wednesday, January 13, 2016

How to live with dementia: New book helps transform sufferers' lives | Health | Life & Style | Daily Express

About Words for a Journey: The Art of Being with Dementia:

"Civil engineer Dr Nick Tyler, a professor at University College London who also designs dementia-friendly products and environments, said the guide “views dementia from an entirely new angle”.

“We look at drugs, medicine, therapies and that should obviously continue, but what strikes me about this approach from Japan is that it is not coming out of the desire to find a cure but trying to understand the people.

“By using a ‘pattern language’, which is a piece of computer science used to look at systems and see if they can be improved, the researchers have tried to understand how people with dementia relate to the world so we can help them.”

Dr Sebastian Crutch, a professor at the Dementia Research Centre at University College London, agrees: “It is really helpful and beneficial to keep finding new ways of supporting people with dementia, ensuring they have more constructive conversations and interactions with family and friends.

“The guide outlines the links through friends and connections and meaningful objects that are important in being able to communicate. Although some of the links may seem obvious, people getting to grips with the illness may not have thought of them. "

How to live with dementia: New book helps transform sufferers' lives | Health | Life & Style | Daily Express:

Communication and Alzheimer's | Caregiver Center | Alzheimer's Association

"People with Alzheimer's and other dementias have more difficulty expressing thoughts and emotions; they also have more trouble understanding others. Here are some ways to help the person with Alzheimer's communicate...."

  • Identify yourself.
    Approach the person from the front and say who you are. Keep good eye contact; if the person is seated or reclined, go down to that level.
  • Call the person by name.
    It helps orient the person and gets his or her attention.
    Ongoing communication is important, no matter how difficult it may become or how confused the person with Alzheimer's or dementia may appear.
  • Use short, simple words and sentences.
    Lengthy requests or stories can be overwhelming. Ask one question at a time.
  • Speak slowly and distinctively.
    Be aware of speed and clarity. Use a gentle and relaxed tone — a lower pitch is more calming.
  • Patiently wait for a response. 
    The person may need extra time to process what you said. 
  • Repeat information or questions as needed.
    If the person doesn't respond, wait a moment. Then ask again. 
  • Turn questions into answers.
    Provide the solution rather than the question. For example, say "The bathroom is right here," instead of asking, "Do you need to use the bathroom?" 
  • Avoid confusing and vague statements.
    If you tell the person to "Hop in!" he or she may interpret your instructions literally. Instead, describe the action directly: "Please come here. Your shower is ready." Instead of using "it" or "that," name the object or place. For example rather than "Here it is" say "Here is your hat."
  • Turn negatives into positives.
    Instead of saying, "Don't go there," say, "Let's go here."
  • Give visual cues.
    To help demonstrate the task, point or touch the item you want the individual to use or begin the task for the person.
  • Avoid quizzing.
    Reminiscing may be healthy, but avoid asking, "Do you remember when ... ?"
  • Write things down.
    Try using written notes as reminders if the person is able to understand them. 
  • Treat the person with dignity and respect.
    Avoid talking down to the person or talking as if he or she isn't there. 
  • Convey an easygoing manner.
    Be aware of your feelings and attitude — you may be communicating through your tone of voice. Use positive, friendly facial expressions and nonverbal communication. 

Communication and Alzheimer's | Caregiver Center | Alzheimer's Association:

Death Doulas: Practical and Emotional Support for Dying People and Their Families

Most of us know about birth doulas, but many of us haven't even heard of an end of life doula. Sometimes we're called death doulas, death midwives, end of life companions or soul midwives. The profession is still very new, but the reason for this is very old. We fear death so we don't talk about it. The problem is we need to talk about it, and I've been doing this for long enough to know that people want to talk about it. They just don't know how.

"How can I mindfully meet this broken heart, longing, grief?" - Jeff Foster

Monday, January 11, 2016

Chicago Sun-Times › Evi & Walter: A love story in any key

This is a beautiful love story about a brilliant musician, now struggling with dementia, and his wife of 66 years.

Except for when he is with his caregiver, she is with him everywhere he goes.

“If that isn’t love, I don’t know what is,” says the son, a Princeton University professor who teaches media and cultural theory in the German department.

Chicago Sun-Times › Evi & Walter: A love story in any key:

Sunday, January 10, 2016

12 Loving Ways to a Beautiful Death

A very useful list.

"Since you don’t know when the summons might come, your first list is the early list: things you should get out of the way from just about the time you’re old enough to be pulled over for drunken driving. This includes creating your last will, your living will, and designating the ones to carry out your wishes. Just remember, you’re never too young to create a will.
The second list will include things that will change grow and evolve throughout your life — such as possessions, passwords, software serial numbers, investments and properties.
In the third list will be things that grow with the passing of years. The older you get, the longer will be the list of people you’ve hurt, offended, shouted at, helped or hammered; and people who’ve walked over you, stabbed you in the back, betrayed you or walked over you. Equally long might be the list of strangers who were kind to you, people who came into your life like angels to save you, or people who you reached out in their time of need. This is the list of gratitude, regrets, and forgiveness.

12 Loving Ways to a Beautiful Death — Life Tips. — Medium

Friday, January 8, 2016

What's your grief?

 "In their book, Continuing Bonds: New Understandings of Grief, authors Dennis Klass, Phyllis Silverman, and Steven Nickman observed that children who had lost a parent found ways to continue their relationship with the parent even after they were gone. The children maintained their connection by cherishing memories, talking to the parent, believing the parent was watching over them, and keeping their objects. Interestingly, they also observed that the child’s relationship with the deceased parent was not static. Instead, it evolved and matured as the child grew.

So if our relationships with our deceased loved ones evolve, then our grief must evolve as well. Not only do we grieve them at the time of the death, but we also grieve them in the future when we enter new life stages, hit milestones, and understand new realties. Although we may have made peace with certain pieces of our grief in the past, in time we discover sadness over losses we hadn’t even known existed."

What's your grief?

Palliative care brings help for patients with serious conditions

 "Intermountain has recently chosen to adopt and implement palliative care throughout their system," said Dr. Gary Garner, Medical Director Palliative Care/Hospice at Intermountain Healthcare.

It works like this.

Traditionally when an individual receives a diagnosis of a serious illness a medical team steps in with advice and direction.

Palliative care fills that gap, offering a holistic approach in which a team listens to the patient and offers education, including information about available options.

In addition to the education, patients receive help with whatever decision they reach. If they decide to forego treatment, they can receive help with their pain. If they are treated, they may find help how to get through the treatment while maintaining a better quality of life.

Palliative care brings help for patients with serious conditions

Thursday, January 7, 2016

Suiting Dennis: A Family Story of a Green Funeral

Suiting Dennis: A family story of green funeral from Mike Ma on Vimeo.

Review: In ‘When Breath Becomes Air,’ Dr. Paul Kalanithi Confronts an Early Death - The New York Times

“I flipped through the CT scan images, the diagnosis obvious: the lungs were matted with innumerable tumors, the spine deformed, a full lobe of the liver obliterated. Cancer, widely disseminated. I was a neurological resident entering my final year of training. Over the last six years, I’d examined scores of such scans, on the off chance that some procedure might benefit the patient. But this scan was different: it was my own.

In a single moment of recognition, everything Dr. Kalanithi has imagined for himself and his wife evaporates, and a new future has to be imagined. Should they have a child, or would that make it harder for him to die? (They do. The book is dedicated to his daughter, Cady.) A job at Stanford for which he was the prime candidate? Not happening. Another good job that would require the Kalanithis to move to Wisconsin? Too far from his oncologist. Long-term plans of any kind? Well, what does long-term mean now? Does he have a day, a month, a year, six years, what? He’s heard the advice about living one day at a time, but what’s he supposed to do with that day when he doesn’t know how many others remain?

When Breath Becomes Air is gripping from the start. But it becomes even more so as Dr. Kalanithi tries to reinvent himself in various ways with no idea what will happen.

Review: In ‘When Breath Becomes Air,’ Dr. Paul Kalanithi Confronts an Early Death - The New York Times

Every Nurse's Nightmare: A Dying Patient With a Frantic Family and No DNR in the Emergency Room

Shared with permission: I think I would be accurate in saying this is every nurse's nightmare.

The 86 year old female comes to the ED via the ambulance ...from her nursing home. She is fragile and frail and non-responsive. Her eyes have a fixed glazed stare. She is in a fetal position, brittle bones, decubitus ulcers everywhere. Her few family members come bursting through the ED doors screaming: 'DO EVERYTHING. And against our morals, against our compassion, against the need to have dignity to this little ladies' last days on earth, we present her with rapid CPR compressions, we feel her tiny ribs crunch and break, her blood pressure is 60/30 and she barely has a thready pulse. And we give her epinephrine and atropine and we continue to compress her chest deep and fast, and her heart rate speeds up to a chaotic fibrillation ... And we scream 'All Clear' as we force an electrical current through her heart..... And we watch her have seizures and loss of oxygen to her brain and leave her with a faint thready pulse and too much time for no oxygen to her brain.... And she 'survives' these insults that we force upon her, leaving an anoxic brain in her contratured body.

And the family is pleased: 'Praise God', He brought her back... It is God's will. She'll live to be 100. And we the ED nurses, we the ICU nurses bow our heads, because we know we brought pain and torment and assault to this tiny malnourished lady who once had a vibrant life.... Who once had a full life... But slipped into the tunnel of dying... Almost peacefully until her family forced us nurses and us doctors to bring her back with intense pain and torment.... And instead of going to heaven... Instead of being in heaven and resting in peace... WE condemned her to a living hell.

Prepare your moms and dads, grandmoms and grandpas and allow them to drift peacefully into that other world. It is not heaven on earth... It is a hell. A hell that is hell-bent, filled with pain and misery.

Your turn.

Tuesday, January 5, 2016

Baby Boomer's Last Revolution: Changing the Way We Die

Baby boomers have spent more than half a century revolutionizing the way we live. Now it is time for us to revolutionize the way we die.

We came of age in the post-WWII era of complacency, consumerism, and conformity. We said the Pledge of Allegiance every morning in school (with "under God" added in 1954 to show the godless commies what was what) and we watched "Duck and Cover" films in school to show us how to respond to a nuclear attack. We were taught the story of unalloyed American exceptionalism in school. America beat the Nazis and polio. We believed in our heroes, from George Washington to Mickey Mantle. Our president was a war hero. Our corporations were benign, promising us better living through chemistry. We ate PB&J on Wonder Bread that was supposed to build strong bodies twelve ways and we had Twinkies for dessert.

Then we grew up seeing our leaders murdered: John Kennedy, Malcolm X, Medgar Evers, Martin Luther King Jr., Robert Kennedy. The U.S. sent troops to Vietnam and war turned out to be more complicated than we had been told. Politicians did not always tell the truth. Around the time we reached voting age, President Nixon was resigning in disgrace.

And so we became the generation that did not trust anyone over 30. We challenged everything the grown-ups gave us from the draft to healthcare to the toxic substances in air, water, and our homes and the products we produced and used. The "Our Bodies Ourselves" movement shifted the focus of medical treatment to give patients better information and wider choices. Was your father in the room when you were born? Did your mother get to decide how she wanted to manage medication for labor pains? You're welcome.

We saw injustice and so we protested and we challenged more. We changed the laws to protect the rights of women, minorities, the disabled, and the LGBT community. We made consumer goods safer, especially cars and toys. We created the modern environmental movement, stopped the damage to the ozone layer, took lead out of gas, and brought our lakes back from near-death.

We understand that there is much more to do, and we have seen some of our most important efforts rolled back or distorted beyond recognition. But we have never given up on our commitment to questioning what is and pushing for what is better.

We understand that some of you who came after us consider us spoiled and selfish. You're welcome for that, too. We did not invent the idea of complaining about the excesses and failures of the previous generation, but we pretty much perfected it.

Here's a secret -- we're delighted when you blame everything on us. First, it means you learned our most important lesson about your obligation to recognize and repair the failures of the past. And second, we know how cycles of history work, which means that your children will think we were just great, while they are carrying on our tradition of rebelling against you.
We can handle whatever you've got. We survived disco, yuppies, Iran-Contra, the Starr report, the bubble and the sub-prime meltdown. One word of advice, though: No complaining unless you have a constructive solution to propose along with it. Otherwise, it's just whining.

Before we turn it all over to you, though, we've got one last revolution: end of life care. We used to talk to our friends about caring for our children, about teething, homework, and college applications. Now we exchange stories about caring for our parents, about finding caregivers and assisted living facilities, about durable powers of attorney and navigating Medicare, about dementia and rehab after strokes. There is a growing body of literature by baby boomers writing about caring for their parents at the end of life including Roz Chast's brilliant Can't We Talk About Something More Pleasant?, George Hodgman's touching Bettyville, and Scott Simon's heartrending Unforgettable.

A director of an assisted living facility says that she began her career helping people in their 50s care for parents in their 70s, but now works with people in their 70s caring for parents in their 90s. The advances in treatment for heart disease and cancer have given us more time than any generation in history with our parents, for which we are grateful beyond words. But it has also given us unprecedented health care challenges with the number of people around the world living with dementia predicted to rise from 44 million today to 135 million by 2050. Our health care system is still too focused on treatment rather than prevention, which means that near-endless expensive treatments are covered, whether they will improve the quality of life or not. But until 2016, there was no coverage for conversations about whether a patient wants those treatments.

The numbers in the studies vary, but all of them conclude that a huge percentage of our health care costs are spent treating people in the last six months of life. Anyone who wants that six months should have it. But because doctors and families are skittish about asking patients what they want, too often the result is needless suffering. Over and over, my friends have told me, "I thought I was doing the right thing by seeking out the best treatment options for my parents and insisting on every possible procedure and medication. But now I realize that it was for me, not for them." Dr. Craig Bowron wrote in the Washington Post about the way that family members, particularly those who have not been caretakers, rush in to insist that "we do everything we can," meaning as many medical procedures and treatments as possible. They often use the vocabulary of battle. "This person may think she is being driven by compassion," he says, but it is more likely to be a reflection of "the guilt and regret of living far away and having not done any of the heavy lifting in caring for her parent." It can reflect the adult child's own fear of death, loss, and lack of control as well. Bowron writes:
When their loved one does die, family members can tell themselves, "We did everything we could for Mom." In my experience, this is a stronger inclination than the equally valid (and perhaps more honest) admission that "we sure put Dad through the wringer those last few months."
One friend said no four times when doctors suggested he put his 96-year-old father, who had severe dementia and intractable pain, into hospice because, "I promised my mother I would not let him die." He thought he was doing what his parents wanted. So he insisted on hospitalization and treatment for his father, who could not understand or cooperate. Not many of us would choose that for ourselves, and we need to let the people we love know while we can.
Each person should have the chance to decide when it is time to shift from health care toward a cure to health care for comfort and pain management. That means giving us and our families the information and support they need. Death is not quick and simple, like in the movies. Just as they have learned to do with childbirth, health professionals need to learn to talk to patients and their families about what to expect. That knowledge is more important than any advanced directive or pain relief.
Some initial efforts are confusing, even intimidating. A long check-list of choices about end of life asks us to project ourselves into choices no one can predict accurately. But important changes are happening now and other promising initiatives are on the horizon.

  • The "slow medicine" movement pioneered by Dr. Michael Finkelstein encourages health care workers to talk to patients about their goals, to treat the person, not the disease. As Dr. Shoshana Ungerleider wrote in Vox:
    My patients have all taught me valuable lessons about what a "good death" might look like. Each one has reminded me that there is more to medicine than placing a line to monitor the heart, or performing an intubation. Just because more tests and procedures exist does not mean that we should perform them all each time. Sometimes the most powerful healing of all comes through the simple act of sitting and listening to our patients with compassion.
    We know that 75 percent of Americans would prefer to die at home. Only 20 percent actually do. We also know that 80 to 90 percent of physicians would not want CPR or mechanical ventilation at the end of life. Doctors actively choose to forgo the suffering that takes place in our ICUs, because we've seen it and we know better. My goal is to close this gap, to educate my patients about their options based on open, honest communication. I no longer see death as a failure but as a place we are all headed at some point -- and if I can help someone live the fullest to the very end, I have practiced the best medicine.

  • A small town in Wisconsin is pioneering end of life conversations. Sarah Kliff writes in Vox that "La Crosse has, over the past three decades, done something remarkable: nearly all its residents have a plan for how they want to die." Even though consultations about end of life wishes are not paid for by insurance or (until 2016) Medicare, the health care practitioners of LaCrosse made it as regular a part of treatment as flu shots and questions about allergies to medication.
    When patient preferences are known -- as they almost universally are in La Crosse -- people tend to select less aggressive courses of treatment. And this is what has earned the La Crosse model so much praise: it's shown a meaningful reduction in health spending as a side effect of respecting patient wishes.

  • California has followed Oregon, Washington, and Vermont in adopting "right to die" legislation. Patients who have been certified by two doctors as being within six months of death (at least one of those consultations in private to prevent coercion) and meet other criteria for autonomy and capacity will be able to choose to end their lives as they wish. As the Washington Post noted:
    [Oregon] collects data on each case, and there have been no reports of coerced or wrongly qualified assisted deaths. The typical patient is about 71, suffering from terminal cancer, well-educated, with health insurance and enrolled in hospice. About one-third of prescriptions were never used, suggesting some terminally ill people are comforted by knowing they have an alternative to extensive suffering should they need it.

  • As of January 1, 2016, Medicare now covers consultations with physicians about end of life wishes. Contrary to Sarah Palin, these are not "death panels." The choices are all with the patient, not the government. Possibly even more significant, Massachusetts Blue Cross has now extended coverage for these discussions as well and other insurance companies are expected to do so as well. These are opportunities for patients to hear what the options are, decide for themselves what they want, and give their directions to the doctors who will be treating them. Unsurprisingly, these consultations themselves are a key factor in increasing the comfort level of people at the end of life because gives them a sense of control and closure. It is similar to the transformation of childbirth in the 1960's and 70's, giving women and their partners better information and more opportunities to create the experience they wanted for themselves and their babies. I like Katy Butler's suggestion of a "Medicare Part Q." It would "make the transition smoothly from useful curative approaches to those focused on sustaining my quality of daily life, to 'comfort care only' and, I hope, a gentle death at home."

  • Hospice and palliative care specialties are becoming more widely available and better resources for people approaching the end of life and their families. The arbitrary "within six months of expected death" standard is increasingly being replaced, allowing a patient to decide when to shift from medical treatment for cure to medical treatment for comfort and pain management. The UK is setting the standard for the rest of the world with about 30 percent of dying people receiving hospice services, many of them dying at home, as they wished.

  • The eco-burial movement provides alternatives to the toxic materials that have traditionally been used in embalming and caskets.

  • There is a new specialty called "death doulas," people specially trained to help those at the end of life and their families. Like their counterparts, the birth doulas, "they understand how to provide support, counseling, and treatment. And friends and family members can serve as "death walkers" for those they love. This description of a granddaughter's last hours with her grandmother is beautiful:
    My sister and I sat on the bed with her for many hours the last week of her life. I would rub her hands, wash her face with a warm cloth, sing to her, tell her some of my favorite memories and sometimes simply hold the quiet space as she slept.

  • Former columnist Ellen Goodman has developed The Conversation Project to help families discuss end of life issues. She writes:
    The last thing my mom would have wanted was to force me into such bewildering, painful uncertainty about her life and death. I realized only after her death how much easier it would have all been if I heard her voice in my ear as these decisions had to be made. If only we had talked about it. And so I never want to leave the people I love that uneasy and bewildered about my own wishes. It's time for us to talk.
    Other resources include "Let's Have Dinner and Talk About Death," and even an app called Cake, which helps people consider the options for funeral preferences and financial planning, bucket list items like places people want to see before dying, and strengthening their connections.

Talking about the end of life is scary. Not talking about it is worse. We need changes and the baby boomers are our best shot for making them. I am trying to have that conversation with my parents and am determined to have it with my children. As Atul Gawande says, "the ultimate goal is not a good death but a good life - all the way to the very end."