Thursday, March 31, 2016

“An Arundel Tomb” by Philip Larkin

An Arundel Tomb
Side by side, their faces blurred,
The earl and countess lie in stone,
Their proper habits vaguely shown
As jointed armour, stiffened pleat,
And that faint hint of the absurd–
The little dogs under their feet.
Such plainess of the pre-baroque
Hardly involves the eye, until
It meets his left hand gauntlet, still
Clasped empty in the other; and
One sees, with sharp tender shock,
His hand withdrawn, holding her hand.
They would not think to lie so long.
Such faithfulness in effigy
Was just a detail friends could see:
A sculptor’s sweet comissioned grace
Thrown off in helping to prolong
The Latin names around the base.
They would not guess how early in
Their supine stationary voyage
Their air would change to soundless damage,
Turn the old tenantry away;
How soon succeeding eyes begin
To look, not read. Rigidly they
Persisted, linked, through lengths and breadths
Of time. Snow fell, undated. Light
Each summer thronged the grass. A bright
Litter of birdcalls strewed the same
Bone-riddled ground. And up the paths
The endless altered people came,
Washing at their identity.
Now, helpless in the hollow of
An unarmorial age, a trough
Of smoke in slow suspended skeins
Above their scrap of history,
Only an attitude remains:
Time has transfigured them into
Untruth. The stone finality
They hardly meant has come to be
Their final blazon, and to prove
Our almost-instinct almost true:
What will survive of us is love.
— Philip Larkin

Wednesday, March 30, 2016

5 Things Grief Taught Me

A very wise piece by Monique Minahan: "Grief taught me that releasing is not the same as relinquishing. My grief is mine forever. When I release her into the world through words or conversation or tears, she is free to leave for a while or return right away, the same or changed but always welcome in this heart. "

5 Things Grief Taught Me

On What to Do When the Going Gets Rough | Tricycle

"Caregiving from a Buddhist perspective is a recognition that this person’s suffering is also my suffering. When I see this, whether I’m the person in the bed or the person making the bed, I have to confront this precariousness. Buddhist practice can help us enormously in continuing to give our attention to what’s actually appearing, as opposed to being swept away by the drama of the process. What are the basic attitudes that might be helpful in being with someone who is dying? One of those that comes to mind is to be completely ourselves. That means to bring our strength and vulnerability to the bedside. And to recognize that people who are dying continue to need very intimate and natural and honest relationships. We can’t serve from a distance, this is intimate work and we have to be part of the equation so it is absolutely essential that we bring our entire selves to the experience. It’s important that we bring to the bedside the quality of empathy. This is maybe the greatest gift we can give another human being—our undivided attention. To listen without judgment or agendas. The great psychologist Carl Rogers once described empathy as “looking with fresh and unfrightened eyes.” I think that’s a wonderful way of thinking about how to be with someone. Also, simple human kindness. When people are sick, details matter. The manner in which we care for someone, the way in which we come forward to offer service, is incredibly important. How can we assist with the simple details? Holding the hand of a frightened patient, doing the laundry, helping someone fill out the insurance forms. Simple everyday activities offered with loving attention that convey acceptance, build trust, and enhance self-esteem. I would add “non-doing” to this list of helpful attitudes. To really have the confidence in our human presence. To slow down, and leave a lot of room for silence, to reduce distractions. Don’t miss this moment waiting for some future event, even the moment of dying."

On What to Do When the Going Gets Rough

Friday, March 25, 2016

Diary of an intensive-care nurse | New York Post

A nurse explains the painful, ugly process of dying when the hospital and the family insist on ICU care.

"It’s been said that dying is easy, and it’s living that’s painful. Not so in the world of intensive care. Patients who have a hope of recovering from their injury, genuinely surviving it, may be fighting to live. For them the torturous days as an ICU patient are required in order to surmount their injury. And there are always cases where nobody knows what the outcome may be, where the right thing to do is maintain physical function and give the body time to heal.

Many patients will survive with deficits, will not return to their former selves but will be able to leave the hospital, go to rehab, begin the hard work of adjusting to another kind of life. But time and again we care for patients who are fighting to die, and having a very hard time of it, because in the ICU there are only two ways to die: with permission, too often not granted or granted too late, or in the last-ditch fury of a full code blue.

We are not helping these people by providing intensive care. Instead, we are turning their bodies into grotesque containers, and reducing their lives to a set of numbers monitoring input and output, lab values and vital signs, which we tweak to keep within normal ranges by adjusting our treatments, during the weeks and days immediately preceding their death. This is the opposite of what should be prioritized when a person is known to be nearing the end of their life without the hope of getting well. I want this to change. People who choose to do the work of caring for the gravely ill must concentrate on monitoring and responding to changes in their vital signs, administering their medications, examining all of their physical systems, coordinating their various tests and procedures, bathing them and cleaning up their bodily messes, dressing their wounds, keeping them comfortable and communicating with their families."

Diary of an intensive-care nurse | New York Post

Thursday, March 24, 2016

How Zen Masters Die - Psychology Tomorrow Magazine

Jeff Warren writes:

"Towards the end of his long life, the English philosopher and mathematician Bertrand Russell, who died at 98, had this to say about overcoming the fear of death:

 The best way to overcome it … is to make your interests gradually wider and more impersonal, until bit by bit the walls of the ego recede, and your life becomes increasingly merged in the universal life. An individual human existence should be like a river: small at first, narrowly contained within its banks, and rushing passionately past rocks and over waterfalls. Gradually the river grows wider, the banks recede, the waters flow more quietly, and in the end, without any visible break, they become merged in the sea, and painlessly lose their individual being. The man who, in old age, can see his life in this way, will not suffer from the fear of death, since the things he cares for will continue. 

 I’ve had a lot of opportunity to think about Russell’s quote, and not just because I am now in my middle years, and thus aging more noticeably (and, it feels, more quickly). For several years I’ve been researching a book on the changes that happen to advanced meditators over a lifetime of practice. Again and again, the central dynamic described is the very one Russell articulates: greater openness and humility and equanimity, an expansion of identity, a paradoxical increase in both the impersonal and the personal, and a lived intimacy with an ever-larger world."

How Zen Masters Die - Psychology Tomorrow MagazinePsychology Tomorrow Magazine:

Do You Need a Funeral Home? DIY Funerals

"Of the nearly 2.5 million people who will die in the United States this year, 99 percent will travel through a funeral home. That’s a big problem, according to Joshua Slocum of the Funeral Consumers Alliance (FCA), a political lobbying group based in Burlington, Vermont. The $11 billion “death-care” industry, he says, is taking advantage of bereaved consumers at a time when they are most vulnerable—even going so far as to purposely mislead people into thinking embalming is mandated by law (it isn’t). The FCA’s goal is to change the way Americans deal with the dead, and it promotes do-it-yourself funerals that consist of a cardboard box, family, and little else. Vocativ spoke with several proponents of home funerals, and followed along with one family as it prepared to lay their mother to rest. "

via Connecting Directors

Sunday, March 20, 2016

A Conversation About Assisted Death with Author Miriam Toews

Anna Quindlen on Grief

“Here is one of the worst things about having someone you love die: It happens again every single morning.”
― Anna Quindlen

Dying, With Nothing to Say -

Do we expect too much from our goodbyes? "I realized that while nearly everyone has a fantasy of a “last conversation” with someone they love, very few people actually have it. It is the fantasy of resolving all conflicts, of emotional catharsis, that rarely ever comes to pass, because the habits of reticence or resentment that were there the whole time are still there, because the proximity of death does not transform personalities, or compel us to cut through to the heart of things, however much we want it to. Even in a drawn-out death, when there is technically plenty of time, the last conversation usually materializes only in parodic form. Take Susan Sontag’s mother, with whom she had a very knotty relationship, whose last words to her daughter were “What are you doing here? Why don’t you go back to the hotel?” Instead of an elegant ending, most of us are left with this unruly irresolution, this muddled cutting off....We have an idea that when someone is dying, a new, honest, generous space opens up; that in the harrowing awfulness of dying there is a directness, an expansiveness, a loosening of inhibitions, the potential for things to be said that could not be said before. But if one does actually manage to pull off a last conversation, what can it be but a few words in a lifetime of talk? How can it be enough?"

Dying, With Nothing to Say -

Friday, March 18, 2016

A Young Med Student Puts Her Studies on Hold to Care for Her Mother

Hannah Roberts was in her fourth year of medical school when her mother, Karla Johnson, was diagnosed with pancreatic cancer. Hannah took a year off to care for her mother. An AARP article about "millennial caregivers" said

Hannah Roberts, 28, has often logged in to CancerCare's support group since her mother, Karla Johnson, 62, was diagnosed with stage 4 pancreatic cancer last spring. "I don't think many people in my age group have experienced anything like this, so that can be isolating," she says. "It's hard to see them on Facebook going on with normal lives."

She has taken a year's leave after her third year at Columbia University Medical School, moving from New York into her parents' home in the Boston suburbs to care for Johnson. She drives her mother to medical appointments, organizes nursing visits and helps prepare meals, while her dad has taken on more tasks at the architectural firm the couple founded.

Another difficult part of her caregiving role, she says, "is not worrying about the professional and personal goals that I've put on hold." But because patients diagnosed with this particularly aggressive form of cancer typically have months, not years, to live, she adds, "I'm trying to be really in the moment with my mom."

Roberts is also working on a cancer research project at the Boston hospital where Johnson goes for chemotherapy treatments, and is aware of the coincidence of her specialty — radiation oncology — a field she chose two weeks before her mom's diagnosis. "It's been quite surreal," she says.

If there's any good to come out of this experience, Roberts says that as a physician she'll be more attuned to the needs of her patients' caregivers, and understand that the challenge "is definitely emotional, but it's also logistical — just everyday tasks that have to be done, and putting yourself second."

Thursday, March 17, 2016

How one of my closest friends taught me how to die

"People dying of a degenerative disease like cancer have things to teach us, if we choose to listen. The lessons are often hard to hear, and they are even harder to embrace. They are gifts that cost too much, horrible but not unspeakable. They are thrust on us, unwanted. But to ignore them is to squander something precious. Some of the gifts Mike left are tangible: his treasure box of songs; his binders worth of smart, dryly funny, improbably entertaining articles and essays; his family. I will draw comfort from those parts of Mike that remain accessible. But it's the other gifts that may guide me somewhere else, somewhere better. Here's the biggest, most ungainly gift Mike left me: a visceral reminder of death. Last year, in the warm Austin fall, when it wasn't clear if the chemotherapy was working, Mike would invite friends on walks, one at a time, presumably for company as well as exercise. I hope he got something more out of them; I know the rest of us did. On one of our walks, he told me he'd never imagined he would become "that guy," the person who makes everyone around him reconsider their priorities and, yes, appreciate their life in a new way. Mike didn't seem angry about it. He knew that it's important to live, and to do that you have to accept that you will die."

How one of my closest friends taught me how to die

Alzheimer's Patients May Be Able To Recover 'Lost' Memories

 "MIT neuroscientists reported in the journal Nature that mice in the early stages of Alzheimer’s can form new memories just as well as normal mice, but cannot recall them a few days later. But they were able to artificially stimulate those memories using a technique known as optogenetics, planting the idea that those memories could still be retrieved with a little help. While optogenetics cannot currently be used in humans, the findings raise the hope — and possibility — that future treatments might indeed reverse some of the memory loss in early-stage Alzheimer’s patients, the researchers say. “The important point is, this a proof of concept. That is, even if a memory seems to be gone, it is still there. It’s a matter of how to retrieve it,” says senior author Susumu Tonegawa from RIKEN-MIT Center for Neural Circuit Genetics, in a press release."

Alzheimer's Patients May Be Able To Recover 'Lost' Memories

Belgian lawmakers to vote on world's first death on demand euthanasia law | Daily Mail Online

The Daily Mail reports on the proposed Belgian right-to-die law.

The world’s first ‘death on demand’ law is set to go before legislators in Belgium who have already ushered through an ultra-liberal euthanasia regime. The new rules would mean no doctor would be allowed to block the wishes of a patient who asked to die. The law – put forward by the country’s opposition socialist party – is thought to have a high chance of commanding support from a majority of parliamentarians.  They come at a time when numbers dying each year under the euthanasia laws have doubled in five years to reach more than 2,000. Doctors approached by someone wanting help to die would under the proposed new law have to approve within seven days, or pass the patient on to another doctor prepared to give approval. The principle is similar to that operated by British doctors under abortion guidelines supervised by the General Medical Council.  They mean that British doctors cannot prevent a patient from getting an abortion, and under them the number of abortions performed each year in the UK has risen close to 200,000, close to one in four of all conceptions. The Belgian euthanasia proposals would also compel doctors to treat requests for assisted suicide as urgent cases – so that no doctor could persuade a patient to wait to see if they change their mind about dying.

Belgian lawmakers to vote on world's first death on demand euthanasia law

Note that Belgium is the first country to legalize assisted death for children, with the approval of a psychiatrist and the parents.

Making Memories and Strengthening Connections in the Last Months of a Sister's Life

From today's Carolyn Hax columns, a sister talks about what she did to make good memories and strengthen connections in the last months of her sister's life, and how that helped her when she was grieving.

My sister’s diagnosis gave her six months to a year, with treatment. She lived 1,200 miles from me, but I decided to give her whatever I could, to make her comfortable and happy. I took unpaid leave to spend a couple weeks at her home. I made her a window-seat cushion that she hadn’t gotten around to making. My husband and I painted her kitchen and hung the five-year-old wallpaper border she had been waiting for her husband to do. I used vacation time to visit again and take her to a Cirque du Soleil performance. She had always wanted to see a Broadway show. My brothers, mother and friends arranged for a flight to NYC, tickets and a hotel. I included her daughter, my daughter and our mother. We had a Mothers/Daughters weekend that brought so much joy to her life.

I miss our daily conversations, her laughter and everything about her. I still cry and feel her loss. But every moment we had together during those last months helps to soften the pain. My sister knew I loved her, and I enjoyed every second of life we shared.

Wednesday, March 16, 2016

Friends Will Say the Wrong Things When You're Grieving

Quoting a grief counselor: “There will be at least one friend you never hear from again because they don’t know what to say. At least one person will tell you not to worry because you can have another baby. And there will be one shining star—someone who you didn’t consider to be that close a friend—who will be there for you more forcefully and consistently than anyone else.”

How to Help a Friend Through Grief

Saturday, March 12, 2016

5 Things I Learned From Helping My Dad Die

From a very moving essay by Noah Michelson about the last six months of his father's life.

"Make it -- all of it -- matter now, because you never know what the future has in store for you."

5 Things I Learned From Helping My Dad Die

Green burial options – 8 eco-friendly ways to die

"From grief to reef" -- becoming a coral reef and seven other ways to replenish the earth with your remains.

Green burial options – 8 eco-friendly ways to die:

Wednesday, March 9, 2016

Poem: A Ship Sails and I Stand Watching Till She Fades, Bishop Brent

"I am standing on the sea shore. A ship sails and spreads her
white sails to the morning breeze and starts for the ocean.
She is an object of beauty and I stand watching her till at
last she fades on the horizon, and someone at my side says:
‘She is gone.’ Gone where? Gone from my sight, that is all;
she is just as large in the masts, hull a spars as she was
when I saw her, and just as able to bear her load of living
freight to its destination.
The diminished size and total loss of sight is in me, not her;
and just at the moment when someone at my side says;
‘She’s gone’ there are others who are watching her coming
and other voices take up a glad shout,
‘There she comes,’ and that is dying."

I Helped Eight People Die

"I created an underground assisted death service that offered innovative non-medical ­methods of dying to Society members. My partner was Evelyn Martens, a retired office worker who’d watched her brother die in agony from bone cancer (she died in 2011). Following Jack Kevorkian’s example, we didn’t require clients to pay for our services. We operated on the Robin Hood principle: members who could afford to cover the costs of our illegal ­operations helped compensate for those who couldn’t. All of this took place in secret. Between 1999 and 2001, we provided eight members of the Society with assisted deaths. The celebrated Canadian poet Al Purdy was one of them, and he authorized me to publish this posthumous account."

Death with Dignity National Center:

Cry, Heart, But Never Break by Glenn Ringtved, with illustrations by Charlotte Pardi, translation by Robert Moulthrop, is a tender story about Death visiting a family with children as their grandmother is nearing the end of life upstairs. "Some people say Death’s heart is as dead and black as a piece of coal, but that is not true. Beneath his inky cloak, Death’s heart is as red as the most beautiful sunset and beats with a great love of life." Death tells the children that sorrow and joy are forever linked. And when their grandmother's soul has flown away, he says, "Cry, Heart, but never break. Let your tears of grief and sadness help begin new life.”"

Tuesday, March 8, 2016

The Good Death by Ann Neumann, reviewed.

 "Neumann, a journalist, begins her book lamenting her father’s death, as well as its location: in a hospice facility instead of at home, despite his wishes and her best efforts. Her grief and regret eventually prompt her to study how Americans deal with the end of life and how it could be better, exploring the religious, legal, and medical institutions that influence and restrict us. At the heart of her book is the difficult question of what makes for a “good” death. Neumann says this is particular to the individual, but at the very least, a good death is characterized by acceptance rather than denial, with a minimum of pain and suffering. To that end, she writes sympathetically about assisted suicide, suggesting that, as an antidote to the prevailing exhortation that the fatally ill “not go gentle into that good night,” we “calculate pain and suffering into the costs of futile care.” Over and over, Neumann hammers home the barriers that prevent dying people from getting what they want. "

Review of The Good Death by Ann Neumann in Slate

Focus on the Social as Well as the Medical Features in Assisted Living

"Nonmedical aspects of daily living determine overall satisfaction with life, which can translate into healthier elder years as evidenced by lower rates of depression and reduced risk of falls, Shippee says. Leedahl worked as a certified nursing aide in a nursing home before getting her PhD in social work. “I always wanted to know: Is there a better way?” she says. “I felt we could be doing better at care by paying attention to quality of life.” In her research, she has visited many facilities. “Some are so beautiful. Others are less elaborate, but they felt cozy and people were happy.” Quality of life is key Nan Sook Park, an associate professor of social work at the University of South Florida in Tampa, studies assisted-living facilities using in-depth interviews of residents. In a 2012 paper, 29 residents at four assisted-living facilities in Alabama were questioned about friendships, routines, mealtimes and activities. “What was striking was the difference in what administrators said and what residents said,” Park says. For instance, administrators say assigned seating at meals makes it easier to track dietary restrictions and gives consistency to people with memory impairment. But residents reported that sitting with the same people at every meal meant there was nothing to talk about. "

My loner father moved into assisted living. With whom should he eat? - The Washington Post

In the last months or days, these treatments can make things worse - The Washington Post

"A woman with ovarian cancer who came to see internist Leslie Blackhall was very upset. The woman’s oncologist had told her it was time to discontinue treatment — that it was doing more harm than good. Blackhall knew that the effects of more chemotherapy would be intense and would compromise this patient’s immune system while buying her only a bit more time. So she asked the woman, who was in her 60s, what she would do with more time. The response: Have more chemo, on the chance it might let her live longer. Medical advances bring the promise of extending life, but some of the treatments used in a person’s last months, weeks or days — such as CPR for failing hearts, dialysis for failing kidneys and feeding tubes for those unable to nourish themselves — often do not provide more time and can worsen quality of life. Yet saying no to more treatment is tremendously hard to do, whether that decision is made by patients or by relatives for patients who are too infirm to express themselves. "

In the last months or days, these treatments can make things worse - The Washington Post

16 Things I Would Want, If I Got Dementia – Purple Elephant

Memories may be gone, but people still need love.

If I get dementia, I want my friends and family to embrace my reality. If I think my spouse is still alive, or if I think we’re visiting my parents for dinner, let me believe those things. I’ll be much happier for it. If I get dementia, I don’t want to be treated like a child. Talk to me like the adult that I am. If I get dementia, I still want to enjoy the things that I’ve always enjoyed. Help me find a way to exercise, read, and visit with friends. If I get dementia, ask me to tell you a story from my past. If I get dementia, and I become agitated, take the time to figure out what is bothering me. If I get dementia, treat me the way that you would want to be treated. If I get dementia, make sure that there are plenty of snacks for me in the house. Even now if I don’t eat I get angry, and if I have dementia, I may have trouble explaining what I need. If I get dementia, don’t talk about me as if I’m not in the room. If I get dementia, don’t feel guilty if you cannot care for me 24 hours a day, 7 days a week. It’s not your fault, and you’ve done your best. Find someone who can help you, or choose a great new place for me to live. If I get dementia, and I live in a dementia care community, please visit me often. If I get dementia, don’t act frustrated if I mix up names, events, or places. Take a deep breath. It’s not my fault. If I get dementia, make sure I always have my favorite music playing within earshot. If I get dementia, and I like to pick up items and carry them around, help me return those items to their original places. If I get dementia, don't exclude me from parties and family gatherings. If I get dementia, know that I still like receiving hugs or handshakes. If I get dementia, remember that I am still the person you know and love. 

16 Things I Would Want, If I Got Dementia – Purple Elephant

Saturday, March 5, 2016

Our Stuff Is Filled With the Souls of Those Who Touched It: Mourning the Loss of People and Things | Maria Shriver

From Maria Shriver:

"When a person dies, it’s the stuff that’s left behind that’s so difficult for us to part with. Parents who have lost children keep rooms as shrines, never to be touched — never to be disturbed. Books line shelves, stuffed animals sit on beds, hair clips and brushes are left where they were last placed by the deceased. Strands of hair intertwined in the bristles, containing DNA from their loved one. A sign of life where life no longer exists. The stuff is our touchstone. Getting rid of it entails a separate and equally painful grieving process. A funeral for our stuff. On my last pass through my parents’ house, I was forced to discard most of my childhood memories. Shipping them from Michigan to California would be costly, and there simply wasn’t any room for them in my house. So there they went, into Hefty bags — my Crissy doll and Barbies, my pig collection and ads I wrote from my first job. And my childhood mattress. All were pulled out to the curb for the garbage men to take away the following day...Stuff is filled with the souls of the people who touched it. There’s no doubt about that. What we need to learn is that letting go of things doesn’t have to mean letting go of the memory of the person who possessed them."

Our Stuff Is Filled With the Souls of Those Who Touched It: Mourning the Loss of People and Things

Celebrating Life When Death Draws Near-Kiplinger

"So-called living funerals are "on the rise," says Denise Carson, author of Parting Ways (University of California Press, $35), which explores alternatives to traditional end-of-life mourning rituals. "Some look like a cross between a wedding and a funeral," she says.

These celebrations provide an opportunity for someone who is near death to gather close friends and relatives and share memories. No rules or customs govern these get-togethers. They can take place anywhere, from a community center to a church or synagogue to a funeral home. "I've seen the honoree dressed in everything from a hospital gown to a tuxedo," Carson says. "Others are more somber, with prayers, psalms, anointing and last rites by clergy.""

Celebrating Life When Death Draws Near-Kiplinger

Wednesday, March 2, 2016

Choir Sings to Dying Patients

Her friend was dying of AIDS, and Kate Munger didn’t quite know how to help. She volunteered for a shift at his Petaluma, California, home. “When it was time to sit by his bedside, I was terrified,” says Kate, 66. He was agitated, thrashing under the sheets. So Kate did what she always did when she felt afraid—she began to sing:

“There’s a moon / There’s a star in the sky / There’s a cloud / There’s a tear in my eye / There’s a light / There’s a night that is long / There’s a friend / There’s a pain that is gone.”

Kate repeated the lyrics over and over, singing for two and a half hours. “It calmed me down, which calmed him down,” she recalls. “I knew I had given him the very best gift that I could. And by the time I finished singing, I knew this was something that would be shared.” And the Threshold Choir was born—now a group of 1,300 volunteers in 120 chapters around the world who provide comfort through song to people on the threshold of life.

“We’re death– and tear-phobic in our culture,” says Kate, who lives outside San Francisco, where the first choirs were founded in 2000. “We tend to make ourselves busy when we should sit down or pray or hold someone’s hand.” Singing gives a patient’s family “permission to be authentic with their tears, their laughter, their sorrow, their grief,” says Kate.

When invited to a bedside, choir volunteers select from a repertoire of about 300 songs, many written by Kate and other choir members specifically to convey presence, peace, and comfort. “We sing very softly and quite close,” says Kate. “We’re trying to re-create the distance between a mother’s mouth and a baby’s ear."

This Choir Sings to People on the Verge of Dying | Reader's Digest

Companions for Dying Patients

"As a critical care nurse, Greg Carter saw pained and dying people throughout his career. Now as a clinical assistant professor in the IU School of Nursing, Carter said the idea of people dying alone keeps him up at night.

No One Dies Alone, a program potentially starting in Bloomington this summer or fall, would work to end this worry by providing people with a companion during the last 24 hours of their lives."

Program will provide companion for dying patients | Indiana Daily Student

Death Acceptance Reading List

Bess Lovejoy and Megan Rosenbloom have put together a list of books about death and dying.

At Last! Your Death Acceptance Reading List | The Order of the Good Death

DAVE BLACKHURST: My mum’s death showed how end of life care should be | Stoke Sentinel

 "The obvious fear with cancer is that the final days will by spent in agony and dehydration.

That couldn't have been further from the truth as, supported by end-of-life expertise, mum was allowed to face her last hours with dignity and without pain, surrounded by loved-ones and friends from her church.

When it came, the end was peaceful with her holding her children's hands.


DAVE BLACKHURST: My mum’s death showed how end of life care should be | Stoke Sentinel

How to Talk About Dying

"When my mother died from heart failure and dementia, I began to talk with others. It was extraordinary. Everyone seemed to have a piercing memory of a good death or a hard death. Some of these stories had been kept below the surface for decades, and yet were as deep and vivid as if they’d just happened.

Too many people we love had not died in the way they would choose. Too many survivors were left feeling depressed, guilty, uncertain whether they’d done the right thing.

The difference between a good death and a hard death often seemed to hinge essentially on whether someone’s wishes were expressed and respected. Whether they’d had a conversation about how they wanted to live toward the end."

How to Talk About Dying - The New York Times

Is it Better to Die in America or England?

From Ezekiel Emanuel:

Death in America is frequently compared unfavorably with death in other countries, where people may not be as focused on extending life with every possible intervention. As Ian Morrison, the former president of the Institute for the Future, once wrote: “The Scots see death as imminent. Canadians see death as inevitable. And Californians see death as optional.” He added, “Americans and the American health care system are uncomfortable with the inevitability of mortality.” 
But is it actually true that end-of-life care in America is more invasive and expensive than in other countries?

We just published in the Journal of the American Medical Association the first systematic international comparison of end-of-life care for patients dying with cancer. We focused on cancer because, in developed countries, it is the second leading cause of death and the most expensive per patient. The good news is that, despite perceptions, the United States is actually not the worst when it comes to caring for these patients. In fact, on some important measures, we provide the best in end-of-life care.


the focus should be less on reducing end-of-life spending and more on moving away from fee-for-service medicine, which incentivizes more care rather than better care....

Last, and most important, there is a reason for hope. While the process has been slow, the United States has improved care at the end of life. In the mid-1980s, more than 70 percent of American patients who died with cancer did so in the hospital. We have cut that number by over two-thirds. And the use of chemotherapy near the end of life, while still high, is also lower than in the past. Interestingly, the trends we observed suggest improvement in what the United States does well, but also some worsening in using the I.C.U. more.
But we can and should do better. We should start by providing universal access to the highest-quality palliative care as the default for all Americans near the end of life.

Is It Better to Die in America or in England? - The New York Times

What We Miss By Delaying Death With Expensive End-Of-Life Care - US News

 "End-of-life laborers are very clear about limiting the extraordinary measures some of their patients allow in their own lives. Their plans, shaped by their work with the dying, give clear direction about how they want to live: deliberately and without much medical intervention as they encounter illness and disease later in life. They sometimes mourn the life-extending measures that can prolong life at a very low quality and instead encourage loved ones to be present as often as possible, continue routines, tell stories, touch our dying loved ones and find ways to meaningfully connect, like looking at photos, being together in nature, listening to music or sharing a favorite food. Although our medical advances are partially responsible for our longer years, when we begin parting with life, many end-of-life laborers remind us to focus on the mundane, not the extraordinary. They encourage family members and patients themselves to pause before pursuing treatments, to be as deliberate and purposeful about planning as possible and to enjoy those things that have always delighted or engaged them for as long as possible."

What We Miss By Delaying Death With Expensive End-Of-Life Care - US News: