Hello My Name Is...Campaign for More Compassionate and Personal Care Starting with an Introduction

"I'm a doctor, but also a terminally ill cancer patient. During a hospital stay last summer I made the stark observation that many staff looking after me did not introduce themselves before delivering care.
This felt very wrong so encouraged and supported by my husband we decided to start a campaign to encourage and remind healthcare staff about the importance of introductions in the delivery of care. I firmly believe it is not just about knowing someone's name, but it runs much deeper. It is about making a human connection, beginning a therapeutic relationship and building trust. In my mind it is the first rung on the ladder to providing compassionate care."





Hello My Name Is...

Connections After Death: Kelli Swazey's TEDx Talk

In Tana Toraja, weddings and births aren’t the social gatherings that knit society together. In this part of Indonesia, big, raucous funerals form the center of social life. Anthropologist Kelli Swazey takes a look at this culture, in which the bodies of dead relatives are cared for even years after they have passed. While it sounds strange to Western sensibilities, she says, this could actually be a truer reflection of the fact that relationships with loved ones don’t simply end when breathing does. (Filmed at TEDMED.)

Sheryl Sandberg on the Friends Who Helped Her Mourn

When my husband, Dave, passed away last spring, my whole notion of plans crumpled. I stopped trying to meditate, but my connection to this group of friends was one of the things that helped pull me through. They checked in daily. Even though they live across the country, they showed up early and often. They did not just hold me as I cried—they cried with me. One day when I was feeling particularly alone and down, a card from one of them arrived in the mail. It said, “One day she woke up and understood we’re all in this together.” It has hung above my desk ever since. These amazing women have supported me since I was ten years old—through ups and downs, laughter and tears, life and now death. Together, we have been through adolescence, college, starting careers and families. They’ve advised me on everything—from what dress to wear to the prom to what job to take. They were part of the inspiration for Lean In Circles and they are a big part of why I am able to smile again. I believe deeply that everyone needs this kind of help and connection. We all need people who encourage us, believe in us, and remind us that we are not alone. For women, this kind of support can be especially important in navigating our lives and pursuing our ambitions. Too often the world tells women why they can’t do something; our friends are the ones who tell us we can... and help us figure out how.

Massachusetts Blue Cross expands benefits for end-of-life care - The Boston Globe

"[Massachusetts'] largest health insurer this week will begin offering some of the newest and most comprehensive end-of-life benefits in the nation, aiming to prod patients and health care providers to discuss death openly and expand services to help people live out their last days.

The move by Blue Cross Blue Shield of Massachusetts comes as a growing number of health organizations put more emphasis on how patients are treated at the end of life by providing and paying for care that is more in line with patient wishes. Most Americans, for example, say they want to die at home, but most still die in hospitals and other institutions, according to several studies."



Blue Cross expands benefits for end-of-life care - The Boston Globe

Alanna Shaikh: How I'm preparing to get Alzheimer's (TED Talk)

My Turn : AJN The American Journal of Nursing

"In medical school they taught us everything about keeping someone alive, but no one ever told me what to do when a patient dies. I had never pronounced a patient dead before. No one had even explained to me how to tell if someone is dead.He could tell. He said take your time. Be respectful. Be methodical. Be confident. Appreciate the meaning of the moment for the family. Listen to the heart, look for respiratory effort. Talk straight. Stay for as long as the family needs you. And then he left me in charge of the floor for the night."



My Turn : AJN The American Journal of Nursing

Embracing the Call to Become a Death Midwife | Roberta Verdant

 "The movement of death doulas and death midwives takes myriad forms, bridging that gap to some degree. Death doulas can provide help of various kinds to both the dying and the grieving. This help can be practical. It can also be spiritual or emotional (or all of those things)"





Embracing the Call to Become a Death Midwife | Roberta Verdant

This App Will Help You Sort Through Your Views On Dying

"Cake, as in “a piece of cake,” is a website and soon-to-launch app that asks people a series of yes-or-no questions about the end of their lives in order to help them think about certain issues, plans and needs. The topics include funeral preferences and financial planning, as well as whether there are places people want to see before dying and how satisfied they would be with their relationships if they died tomorrow."



This App Will Help You Sort Through Your Views On Dying

The Conversation Project: Have You Had the Conversation?

Hillary Clinton Promises More Funding for Alzheimer's Research

Democratic Presidential candidate Hillary Clinton has made a cure for Alzheimer's a key policy of her campaign, with details of a plan announced this week. The Wall Street Journal reports:

The plan would set aside $2 billion a year for Alzheimer’s, tracking recommendations made by experts in the field, in an effort to find a cure in the next 10 years. The sum is about four times what the National Institutes of Health says it has spent annually on Alzheimer’s research in recent years. A new budget package signed into law by President Barack Obama last week boosted Alzheimer’s research spending to $936 million, an increase of $350 million, according to the National Institute on Aging.

Visualizations courtesy of Graphiq.

Wisconsin is learning how to die - Vox

One town is making a commitment to conversations about end of life, even if they are not paid for by insurance or Medicare.



"La Crosse is a small town in western Wisconsin, right on the Minnesota border. It has about 51,000 residents. And La Crosse has, over the past three decades, done something remarkable: nearly all its residents have a plan for how they want to die.

"One of our doctors recently told me that making a plan is just like taking blood pressure or doing allergy tests," says Bud Hammes, a medical ethicist at Gundersen Health System, one of La Crosse's two hospital networks. "It's just become part of good care here.""



Wisconsin is learning how to die - Vox

Jane Austen’s Guide to Alzheimer’s - The New York Times

This is a beautiful essay about an unexpected lesson from Jane Austen's Emma.  Carol J. Adams writes about understanding Emma as a caretaker for her anxious father.



"Early on in tending to my mother, who had Alzheimer’s, I was sustained by other Austen novels, but during the middle stages of her disease it was all “Emma,” all the time. What started as entertainment soon became an important guide.

It seemed that I was always one step behind her illness, so I stockpiled books on caregiving, including Kenneth P. Scileppi’s “Caring for the Parents Who Cared for You.” When I read his statement “In the life of a demented individual, there is one cardinal rule: All change is for the worse,” the person I thought of wasn’t my cognitively impaired 92-year-old mother; it was Emma’s father, Mr. Woodhouse. He is introduced to us as “a nervous man” who hated “change of every kind.”

The novel asserts that Emma had little to distress or vex her, yet describes many distressing and vexing events. Emma is parenting her parent and has been doing so for quite some time."



Jane Austen’s Guide to Alzheimer’s - The New York Times

For the record: Jonathan Freedland on his sister’s farewell Desert Island Discs | Life and style | The Guardian

A beloved sister's last request -- to be "interviewed" by her brother about the music she would want to take with her to a desert island, for a recording that her daughters could listen to after she was gone.



"I decided the only way I could begin to handle this encounter was professionally, to approach it as a radio interview. Fiona had told me what pieces she had chosen and I came with them lined up, ready to play. I worked out what areas to cover and when. I suppose I knew I was distancing myself from what was really happening.

We sat in her living room. Or, rather, I sat. She lay on a couch, legs outstretched, her head supported by cushions, a microphone clipped to her top. At intervals we would stop. She would sip a glass of water, I would go off to microwave the small thermal beanbags she would put by her neck to ease the pain. It was constant and severe by then, but she was not to be deterred. An accomplished lawyer, specialising, as it happened, in medical issues, she revealed herself that day as a natural broadcaster: she was fluent, funny and completely engaging. Nothing was written down, but she knew exactly what she wanted to say."



For the record: Jonathan Freedland on his sister’s farewell Desert Island Discs | Life and style | The Guardian:

How secular Americans are reshaping funeral rituals - Religion News Service

 "“A surge in the number of Americans that no longer identify with any religion has contributed to the decline of the historically traditional funeral in America — and the rise in cremation as the disposition of choice,” says the National Funeral Directors Association in its latest annual report.

For the past few years, the association has conducted surveys asking Americans 40 and older to rank the importance of including a religious component in the funeral for a loved one. The percentage of people responding that it is “not at all important” has more than doubled in the last three years, from 10 percent to 21 percent."



How secular Americans are reshaping funeral rituals - Religion News Service

When your spouse dies - The Washington Post

Memories that are no longer shared when half of a couple is gone.  The Washington Post has exceprts from the forthcoming book The Angel on My Chest, by Laura Pietrzyk, the essay 10 Things Only You Know Now.





When your spouse dies - The Washington Post

Grace Paley's Poem About Mortality: I had thought the tumors...

I had thought the tumors...  by Grace Paley  I had thought the tumors on my spine would kill me but the tumors on my head seem to be extraordinary competitive this week. For the past twenty or thirty years I have eaten the freshest most organic and colorful fruits and vegetables I did not drink I did drink one small glass of red wine with dinner nearly every day as suggested by The New York Times I should have taken longer walks but obviously I have done something wrong I don’t mean morally or ethically or geographically I did not live near a nuclear graveyard or under a coal stack nor did I allow my children to do so I lived in a city no worse than any other great and famous city I lived one story above a street that led cabs and ambulances to the local hospital that didn’t seem so bad and was often convenient                        In any event I am already old and therefore a little ashamed to have written this poem full of complaints against mortality which biological fact I have been constructed for to hand on to my children and grand— children as I received it from my dear mother and father and beloved grandmother who all ah if I remember it were in great pain at leaving and were furiously saying goodbye

Gabriel Roth on the First Holiday after the Death of a Family Member

"As early as possible, get all the adults in one place. Seize one of those unscheduled sitting-around moments that are the best parts of family gatherings. Clear your throat and get everyone’s attention, and then raise the issue directly. Acknowledge that you all miss the dead person and that everyone feels anxious about facing the holidays without him or her. And then say how much you’re looking forward just to spending time with everyone and that we can all do this in our own way—the point is that we’re all going to be together, which when you think about it is what’s really important about whichever holiday this is anyway. (This may or may not reflect your true feelings, but go with it.)

Some people might cry at this point, and other people won’t, and it’s good to get that out on the table, the fact that everyone’s going to be doing this their own way. Work on being OK with whatever your way turns out to be, and then work on being OK with everyone else’s ways. If anyone has a problem with your way, try to remember that that’s part of their way. Start forgiving everyone already, if you can."



Advice on coping with death over the holidays.

A parting lesson from my parents - The Boston Globe

 "A 2014 REPORT by the Institute of Medicine called “Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life” found that, despite some progress over the past 20 years, a wide gap still exists between the kind of end-of-life care we want and what we usually receive. Many of the report’s recommendations for improvement focus on two broad areas — communication among patients, loved ones, and clinicians, and the care patients get during advanced illness and at the end of life.

Research finds cascading benefits from talking early about our end-of-life care wishes. Conversations about goals and preferences are the first step to formal advance care planning — the process of thinking about and documenting priorities and wishes for end-of-life care. These conversations, in turn, allow patients and families to begin to prepare emotionally for serious illness and can alleviate patient concerns about whether they will be involved in decisions about their care. What’s more, people who have created advance care plans are more likely to choose palliative and hospice care focused on relieving pain and discomfort near the end of life."



A parting lesson from my parents - The Boston Globe

2015 is the year America started having a sane conversation about death - Vox

Sarah Kliff writes in VOX: "The United States has — quietly and with little fanfare — begun to do something quite remarkable. We've started to have a more sane conversation about death, something that just this spring, as I wrote in a lengthy essay, seemed near impossible. That has allowed for significant policy changes that will, starting in 2016, begin to revamp the way Americans plan for the inevitable."





2015 is the year America started having a sane conversation about death - Vox

No One Dies Alone: End-of-Life Vigils and Doulas

"In Western countries, thousands of elderly will die alone this year—some within the institutions that care for them, but many in their own homes. In Japan, where one in four of its 127 million inhabitants are over the age of 65, it has become such a common occurrence—where the dead are not found for many weeks—it even has a name: kodokushi, lonely death.

In some part, the increase of the “lonely death” is the result of an aging global population where people are outliving relatives and friends—12.5 million Americans over the age of 65 live alone. And with more than 50 percent of the world now living in urban areas, the anonymous and transient culture that cities foster adds to our collective unawareness of who might be dying next door.

But we must also take personal responsibility. Our society has become increasingly fearful and intolerant of aging and dying. It is as if we would rather be immortal machines than face the rite of passage that comes with being part of nature.



The introduction of hospice care in the last century has sought to ease the final days of the living, but it serves just a tiny fraction of the population. Now end-of-life volunteer programs are stepping in. The volunteer-led No One Dies Alone (NODA) program was introduced by a nurse in Oregon in 2001. It involves volunteers holding “vigil shifts” for the dying in hospitals, and has been adopted in hundreds of institutions across the U.S., Singapore, and Japan. In the last 10 years, the efforts of NODA have been taken one step further with the introduction of tailored end-of-life volunteer training programs held beyond hospital wards."



Serving the Dying: End-of-Life Doulas

A daughter to father heart-to-heart on EOL Tom & Jennifer Brokaw at TEDxStanford

She Kept Her Child at Home to Prepare Him for Burial and Say Goodbye

Virginia Prifti describes why and how she kept her son at home after his death to prepare him for burial and say goodbye.

A new book by Reverend Thomas V. Parrish, Stepping Into Eternity, describes "the truth of what believers in Jesus Christ can expect at the doorway to eternity." Reverend Parrish, a Lutheran clergyman, begins by describing the experience of his mother's passing, where "she was visited by Jesus Christ who spoke directly to her and then proceeded to take her by the hand and walk her into the Kingdom of God." He writes about the "peace, hope, and joy" he witnessed at the passing of more than 30 believers. This book is intended to guide those who have made a commitment to Jesus through their final moments on earth, quoting his mother-in-law "The church does a fairly good job at teaching us how to live as Christians, but I did not receive any teaching or practical preparation for dying."

The section on being a witness for a dying person is especially valuable, regardless of your faith status. "Listening to the dying means disciplining yourself to really hear what they are saying without being pressured to fill the void or satisfy your inner need to be comforting." He writes with insight about the importance of reflecting back the experience of the person who is dying, which brings more comfort than attempts at reassurance. He urges friends and family members to "let them lead the discussion and stay focused on their needs, not your needs." He speaks with great feeling about the importance of touch. And he writes with great compassion about comforting those who are ready to die and struggle to find God's purpose in letting them suffer.

For more information, visit Reverend Parrish's To Eternity website.

A Children's Book About Grief

The Heart and the Bottle, written and illustrated by Oliver Jeffers, is a very wise book for children about loss and grief.  A little girl is so sad when her father dies that she "puts her heart in a bottle" so she will not feel the pain any more.  But if she cannot feel pain she cannot really feel happiness, either.  It isn't until she grows up and gets some help from another little girl that she finds the courage to feel again.  

What working in a nursing home taught me about life, death, and America’s cultural values - Vox

 "For the past eight months I have been working as a psychotherapist with dying patients in nursing homes in New York City. It's an unusual job for a psychotherapist — and the first one I took after graduating with a PhD in clinical psychology. My colleagues were surprised. "Why not a hospital? Or an outpatient clinic? Do the patients even have a psychiatric diagnosis?"

The short answer is that I wanted to see what death looks and feels like — to learn from it. I hope that I can also help someone feel a little less lonely, a little more (is there a measure to it?) reconciled."


Only the important things remain.  Routines help keep you happy. Old people have the same emotions and fears as young people. Cultivate a connection to something outside yourself.  Plan your death.



What working in a nursing home taught me about life, death, and America’s cultural values - Vox

Helping People With Learning Disabilities Deal with End of Life Issues

"Clearly people with a learning disability may challenge health services for a variety of different reasons, but until the questions raised by our recent report are addressed, such challenges will ultimately never be resolved."



This report is an excellent resource.

Doctor wants patients to reclaim dying as part of living - Spokesman Mobile - Oct. 25, 2015

Americans are dying all wrong – spending too much time and money in hospitals and intensive care units receiving invasive treatments instead of enjoying those last, valuable days at home, argues Ira Byock, one of the nation’s experts in palliative care and the chief medical officer for the Providence Institute for Human Caring in Torrance, California.

Byock is calling for a revolution, where health consumers – especially patients and their families – demand a better death on their terms. That means accepting that death is a natural part of life and that at some point medicine can’t save people. It means keeping people out of pain and at home so they can be present in this poignant time that is often sacred for families.

“It means that at some point in time we have to care for their comfort, dignity and support their interpersonal, social and spiritual well being,” Byock said in a recent telephone interview. “We know how to do this. The best hospice, best palliative care and the best nursing homes give us this model and show us the way.”

Doctor wants patients to reclaim dying as part of living - Spokesman Mobile - Oct. 25, 2015

The Wisdom Daily » Grieving Loss Before a Death

"Yet, here I am again. I tricked myself into believing that this time it would be different. My father, opposed to my mother, had lived a long life. More, his past years were filled with progressive dementia. He always knew who I was, but our conversations were painfully circular and he no longer had any access to his brilliant ability to critically dissect layers of ideas. He was once a brilliant English professor who could seamlessly dissect any complex book he read, or play he had seen; and then put the art back together with new light and innovative insight. But over the past few years, he lost his filter and would say anything he felt to anybody. There was less and less of my "real" father present.

And so, as he continued to become a shell of who he once was, I began the process of mourning him while he was still physically alive. I grieved the part of him that was no longer here. I cried for the father I wanted so badly to embrace my children, his grandchildren. I mourned for the father I wanted to ask about my career and relationships. I yearned for the Papa who would challenge my ideas about the world and would lend his wisdom about the current state of politics, society, theater and film. Our relationship had boiled down to my siblings and me comforting him as much as we were able; to help him enjoy whatever life he was still able to embrace.

Grieving the part of him that was gone while he was still alive was spiritually and emotionally healthy. I felt guilty at first because I thought it was disrespectful or blasphemous. But, I realized I was just struggling with the old cobwebs of superstition. My mourning of the parts of him that were no longer here was actually good and cathartic... I would recommend it most highly to anyone in a similar position.

The shock came however, in dealing with the finality of it all, despite the fact that I had already began the process of mourning. It is not the same as my mother's death. It is different because he was almost 91 and she was only 68. I know there are only a certain amount of years we finite beings are allowed on earth. Yet, the unique pain and emptiness that only death can bring is the same. Each morning I awake and remember like it never happened that my parent is indeed gone."



The Wisdom Daily » Grieving Loss Before a Death

Should Parents Be Allowed to Make End-of-Life Choices for Their Children?

"The Doctors speak with one mom who is fighting for parents’ rights to make end-of-life decisions, such as “do-not-resuscitate” directives, for their terminally ill children. Hear from attorney and child advocate Areva Martin and advanced directives expert Dr. Monica Williams Murphy as they discuss whether parents alone should have that power."



Should Parents Be Allowed to Make End-of-Life Choices for Their Children?

What to Say to Someone Who is Gravely Ill or Grieving

What not to say: Everything happens for a reason.  Amorette Kitsa, @funnerthanhell explains what you should not say and then tells us what you should say:

If you feel the need to say something, say, “I am so sorry that you are going through this.” Be simple, be honest, be genuine. Don't make big, flowery speeches about a divine purpose or how transitory life is. They don't need that. They need to know that you're there for them and that you care. That's all.
Look for ways to help constructively. It might not necessarily come in the form of a casserole and a psalm. Do they need a companion and distraction during chemo treatments? Are they having trouble with transportation? Do they need help with child care? Do they need help researching financial assistance? Act intuitively, keep your eyes and ears open, and help directly, where it does the most good.
Respect their boundaries. Let them decide how much help and input they want to receive from you. It is exhausting to be sick and to be expected to gratefully receive a parade of people. The parade actually feels predatory because you get people who want to snap “last photos” with you, see you for the “last time,” and hold you hostage with religious speeches that make them feel better while you feel worse. If they don't want the hassle of dealing with anyone but immediate family, respect that. If they will see you but are running low on energy, meet with them briefly. If you were never touchy-feely with them before, don't start now unless they initiate physical contact. Follow their lead.
Don't try for the “big discussion” thing. Don't force a heart-to-heart discussion for your own benefit. A gravely ill person isn't an idiot, and he or she can sense the tone of your visit. It's better to enter conversations casually and gently. Instead of “I remember you were always ... ,” which sounds stilted and final, try pointing out something that triggers an easy conversation: “There was a little boy outside who reminded me of so-and-so. Remember when we ... ”
I guess the best way that I can put it is that they're already going through hell, and they don't need for it to be any worse than it already is.

Imagine a Medicare ‘Part Q’ for Quality at the End of Life

Katy Butler writes in the New York Times:

My father, and others like him, suffered because, at the tail end of life, Medicare continues to pay well for fix-it treatments focused unrealistically on cure and underpays for care and desperately needed home support. In his last six years, it paid more than $80,000, all told, for treatments that included a hernia repair, a pacemaker, and $24,000 for the injectable drug Lucentis which, sadly, failed to arrest the macular degeneration that was robbing him of sight. It covered a series of ambulance rides, emergency room visits and a hospital stay after he fell repeatedly on throw rugs and down the stairs, once breaking his wrist, falling on my mother, and leaving her black and blue from toe to hip. 

But it paid very little for home health aides to give my mother respite and cut off, far too soon, the speech and physical therapies that helped maintain his ability to function and take pleasure in life. Under fee-for-service medicine, Medicare paid to patch him up after he fell but not to keep him from falling.               

...
That’s why I think we need an optional new Medicare benefit. It would be called Part Q, for Quality of Life. Only those who seek it out could sign up. Democrats should love it for expanding services. Republicans should love it for expanding freedom of choice without raising costs. Those who don’t like it can leave it alone. But I’d join as soon as I turned 80 — and earlier if I developed chronic health problems.
Once I signed up, a coordinated Part Q primary care team — a concierge medical service for the 99 percent — would take responsibility for all my medical care until my death. Over time, it would help me 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. 

I See Dead People: Dreams and Visions of the Dying | Dr. Christopher Ker...

Asking agonizing questions at the end of life - The Washington Post

"The passage of an aid-in-dying law in California should be a wake-up call, said R. Sean Morrison, a professor of geriatrics and palliative-care medicine at Mt. Sinai’s Icahn School of Medicine in New York. Support for the law is a sign of “how terrified patients are of what they will experience at the end of life,” Morrison said.

Morrison said that once patients who ask to hasten their death get their symptoms controlled and their spiritual needs addressed, the overwhelming majority want to keep living.

“Their choice shouldn’t be an assisted death or living with intractable suffering,” Morrison said."



Asking agonizing questions at the end of life - The Washington Post

One of Us -- Wendell Berry

One of Us  by Wendell Berry  Must another poor body, brought to its rest at last, be made the occasion of yet another sermon? Have we nothing to say of the dead that is not a dull mortal lesson to the living, our praise of Heaven blunted by this craven blaming of the earth? We must go with the body to the dark grave, and there at the edge turn back together—it is all that we can do—remembering her as she is now in our minds forever: how she gathered the chicks into her apron before the storm, and tossed the turkey hen over the fence, so that the little ones followed, peeping, out of the tall grass, safe from the lurking snake; how she was one of us, here with us, who is now gone.

What Older Patients Need From Doctors

A panel of elderly advisors tells medical students that they need doctors who can listen.

"Efforts to introduce relatively healthy older adults to medical students can 'reduce the sense of futility and show [the students] that there are real people with real lives who can benefit from quality health care,' said Chris Langston, program director at the John A. Hartford Foundation, which focuses on aging and health, who has been analyzing the trend for the past several years."



What Older Patients Need From Doctors

Talking to Family Members about Cognitive Decline

Cognitive decline can quickly become a serious issue in any family. Identifying concerns, preferences and goals may help a family prepare for the decisions that come along with cognitive health issues.

By 2050, the number of Americans with Alzheimer’s disease is expected to nearly triple to 13.8 million.1And, in a recent survey conducted by Merrill Lynch, 54% of respondents said Alzheimer’s is the scariest disabling condition that one can encounter later in life. Against that backdrop, preparing is essential for our aging population, especially older wealthy individuals, who can be prime targets for fraud and other types of abuse.

Talking about cognitive decline is crucial. Yet discussing what to do if one becomes mentally incapacitated can be one of the hardest steps in a process. It requires both sensitivity and practicality. The resources on this page will help you consider some of the best ways to start these difficult conversations."



The full report on memory loss and your family.

What do You Want for EOL?

WHAT WOULD BE MOST IMPORTANT TO YOU
IF YOU BECAME CRITICALLY ILL?



• 66% say being comfortable and living without pain.

• 60% say ensuring that family isn’t burdened by tough decisions.

• Just 7% say receiving all the care possible to prolong life.



For more information.

Mothering My Dying Friend - The New York Times

 "In a Venn diagram of tending helpless people at the extremes of life, the circle of caring for a dying person overlaps almost completely with the one for caring for a baby. Both are repetitive, intimate, often gross, sometimes funny, weirdly frantic even as they’re crushingly tedious, and a total act of devotion. In the nonoverlapping part of the end-of-life circle, there’s pain, grief, despair and a dreadful fading. There is movement not forward, toward consciousness, but backward, away from it. And for all of your endless patience there is nothing at the end. Just death, and your only job is a kind of mothering right up to the lip of the abyss.

"



Mothering My Dying Friend - The New York Times:

Book Q&As with Deborah Kalb: Q&A with Kelley Clink

Deborah Kalb interviews author Kelley Clink about her book, A Different Kind of Same, a memoir of her brother's suicide and the grief that followed.



"My brother’s death shattered that armor. Grief stripped me down to my rawest self, and I had no idea how to handle everything I was feeling. Actually, I didn’t know how to handle anything I was feeling.

And I didn’t know how to talk about it. I was terrified to talk about it. I’d conditioned myself to hide messy and complicated emotions for so long, I was sure that anyone who knew the depth of my grief would turn and run from me, screaming.

Writing broke those big, messy, complicated emotions into manageable pieces. It helped me get some of the chaos out of my head. But most important, when I found the right words for those feelings, when the words came from my fingers instead of my mouth, they were much easier to share."



Book Q&As with Deborah Kalb: Q&A with Kelley Clink

3 Ways For Dealing With Grief, From Someone Who Lost A Parent As A Teenager - MTV

"Grief is all around us. It’s not something tangible, not something you can necessarily see or pinpoint. The tentacles of grief have no expiry point; no magic moment where it stops. It can subside, sure, but leave? Never.

One in every 1,500 secondary school pupils dies each year. One in seven Americans will lose a parent or sibling before the age of 20. So why aren’t we, as a society, talking about grief?"



Don't be afraid to talk about it.  Sometimes that means letting people know it is all right to talk to you.



3 Ways For Dealing With Grief, From Someone Who Lost A Parent As A Teenager - MTV

Dealing With Grief During the Holidays | Cheryl Scott

 Cheryl Scott has some good advice at the Huffington Post for coping with the holidays when you are grieving.



"I've come across many suggestions for coping with grief and loss, especially during the holidays. Here are four that have helped me the most."



Be kind to yourself.

Rethink your traditions.

Talk about it.

Give yourself permission to smile and even feel a moment of joy.



Dealing With Grief During the Holidays | Cheryl Scott

World Health Organization seeks Medical Officer in Palliative Care

 "The World Health Organization (WHO) is recruiting for the post of Medical Officer in the Service Delivery and Safety (SDS) Department of the Health Systems and Innovation (HIS) cluster.

The post is for one year and the successful applicant will be based in Geneva, Switzerland, under the direct supervision of the SDS adviser responsible for palliative care."



World Health Organization seeks Medical Officer in Palliative Care

Third of dying hospital patients in Canada marked to receive CPR against their wishes, Canadian study says | National Post

"More than a third of elderly, gravely ill hospital patients are tagged to receive cardiopulmonary resuscitation even though they don’t want the painful and usually futile measure, concludes a new Canadian study.

The authors call the unwanted orders for CPR on the sickest patients a type of medical error, and say it’s the result of a communications breakdown hospitals need to confront."



Third of dying hospital patients marked to receive CPR against their wishes, Canadian study says | National Post

Why I Became An End of Life Doula | Once I've Gone

"I decided then, – an exact moment that I can recall with perfect clarity – that I would stop someone from dying alone, like he did. I understand now, that I wanted revenge against death, or redemption for myself and my inability to be there for him. What it amounted to, was for this optimistic, arrogant, ambitious and grieving seventeen year old girl, to change the way we die, to design a new and better ending.

I was naïve. But today, in my role as an end of life doula, I can sometimes come close. If I’m able to make a difference to the end of someone’s life, I feel grateful and thoroughly privileged.

Getting to this position has been to follow long and wandering path, with the obstacles and diversions that life presents slowing me down. But it was a path that led from his death and my decision. That experience, that loss, is the reason I am an end of life doula.

Neil Gaiman wrote: I’ve been making a list of the things they don’t teach you at school. They don’t teach you how to love somebody. They don’t teach you how to be famous. They don’t teach you how to be rich or how to be poor. They don’t teach you how to walk away from someone you don’t love any longer. They don’t teach you how to know what’s going on in someone else’s mind. They don’t teach you what to say to someone who’s dying. They don’t teach you anything worth knowing.

There is nothing on Earth – nothing inevitable, anyway – that we are prepared for less than death, and I just don’t understand why that is. Where is our guidance for this? This thing that every single one us will have to face?"



Why I Became An End of Life Doula | Once I've Gone

Doctors are waiting too long to tell patients death is near

"It’s a surprisingly common theme in American emergency rooms. Family members arrive with patients who are verging on death but can’t articulate whether they want potentially life-saving medical procedures that might also carry the risk of debilitating consequences. They have never had the talk.Obermeyer, it turns out, is developing a novel approach so that patients — and their clinicians — avoid that kind of scenario. The idea is to help doctors know when patients have begun a decline toward death and should have a conversation about end-of-life choices — preferably before they reach the ER...Three years ago, Obermeyer received a National Institutes of Health grant designed to assist “exceptionally creative scientists who propose highly innovative approaches to major challenges in biomedical research.” He said his research has already yielded promising results, with published data coming soon. The next step is to establish a system to alert doctors that a patient’s condition might warrant an end-of-life conversation."

Doctors are waiting too long to tell patients death is near

Air Dates | AIDS Radio Documentary: Dying Words

Between November 15th, 2015 and January 10th, 2016 the “Dying Words” radio documentary will air on NPR affiliate stations across the country. Here’s a list of locations and air dates.

Sun, Nov 15, 1pm Oklahoma City, OK KOSU
Mon, Nov 16, 11pm Seattle, WA KUOW
Wed, Nov 18, 3pm Fresno, CA KFCF
Sun, Nov 22, 8pm Boston, MA WGBH
Fri, Nov 27 at 10am & 8pm Park City/Salt Lake KCPW/KPCW
Sat, Nov 28, 6am New York WNYC on 93.9FM/NJPR stations
Sun, Nov 29, 4pm New York WNYC on AM 820
Sun, Nov 29, 7pm Houston KUHF
Sun, Nov 29, 7pm Hartford, CT WNPR
Sun, Nov 29, 8pm Chicago WBEZ
Sun, Nov 29, 9pm New York WNYC on AM 820
Sun, Nov 29, 9pm Mount Vernon, WA KSVR & KSVU & KSJU
Sun, Nov 29, 10pm Philadelphia WHYY
Sun, Nov 29 Phoenix, AZ KJZZ
Mon, Nov 30, 8pm Charleston, WV WVPN West Virginia Public Broadcasting
Mon, Nov 30, 9pm Austin KUT
Mon, Nov 30, 10pm New York WNYC on 93.9FM
Tues, Dec 1, 11am Miami, FL WLRN
Tues, Dec 1, 11am Albany, NY WAMC
Tues, Dec 1, noon & 9pm Minnesota MPR on "MPR Presents"
Tues, Dec 1st, 1pm Bangor/Portland/Lewiston, ME Maine Public Radio
Tues, Dec 1, 8pm Dallas KERA
Tues, Dec 1, 9pm Cleveland WCPN
Tues, Dec 1, 9pm Las Vegas KNPR
Tues, Dec 1st Atlanta, GA GPB/Atlanta
Sun, Dec 6, 10am Cape Girardeau, MO (Missouri) KRCU
Sun, Dec 6, 7pm Charlotte, NC WFAE
Sun, Jan 10th Fort Myers, FL WGCU



Air Dates | Dying Words

Caitlin Doughty, Artisanal Undertaker - The New Yorker

An excellent article about the movement to reclaim the way we deal with death -- to literally bring it home.

Caitlin Doughty, who was about to open her first funeral parlor, in Los Angeles, gazed at a skull that she had put on display above the desk in her office. Although it was plaster, the skull was a provocative presence in a room where Doughty planned to receive grieving families. It was mid-June, and that afternoon John Gettys, a field representative of the California Cemetery and Funeral Bureau, was coming to give the business a final inspection. Doughty, who is thirty, said, “I want the office to look like me, but I don’t want it to look too Arty Death Hipster.” 

Caitlin Doughty, Artisanal Undertaker - The New Yorker:

Humans of New York: Caring for a Mother With Alzheimer's

Humans of New York: "“I took care of my mother for seven years when she got Alzheimer’s. In a way, the experience boosted my self-esteem because now I know how much I can offer to someone I love. I’m a ‘ride or die’ chick.”"

Cultural Influences on End-Of-Life Care

"Dying is a profound and uniquely individual experience, although the need for comfort, peace, dignity, and the presence of loved ones at the end of life is universal. Still, unique aspects of culture—beliefs, mores, norms, standards, and guidelines—can play a significant role in how you handle the dying process.

The prospect of death brings up many sensations and many feelings, including fear, anxiety, nausea, dizziness, anger, guilt, a sense of helplessness, or worry—and all those feelings are normal.
Many factors influence a person’s culture and, therefore, choices about end-of-life care: worldview, ethnicity, geography, language, values, social circumstances, religion/spirituality, and gender.

For example, your culture probably influences your choices about types of support at the end of life, such as whether or not to use resuscitation measures, medications, medical interventions, or feeding tubes or whether or not to withhold nutrition and fluids.

Your culture can influence who is with you or your loved one as they are dying, and whether you or your loved one will choose to die at home, in the hospital, or in a hospice facility. Culture can also influence the foods eaten and the clothes worn during the rituals and ceremonies that accompany and come after the dying process. Some cultures treat death with the utmost reverence while others prefer to celebrate the life before it. Other cultures fear death.

Communicating your cultural beliefs will help care providers more fully support you as a whole person. Making your beliefs and values known to those who are providing your care (or your loved one’s care) helps ensure that these wishes are respected.

Since dying is a unique experience profoundly influenced by culture, you and each of your family members may cope with the dying process in a different way. Past losses, levels of education or experience, spiritual and religious beliefs, and personal philosophies may all affect feelings, reactions to, and expressions about dying. By embracing your cultural background, dying and death is more likely to be meaningful and peaceful."



Cultural Influences on End-Of-Life Care

In Grace's Honor | Trish Vradenburg Wrote a Play Inspired by Her Mother's Struggle with Memory Loss

 "My mother, Bea Lerner, was a powerhouse. Politics was her passion. Back in 1960, John F. Kennedy credited her with winning New Jersey -- a pivotal state -- for his election. As a result, she earned a spot on Nixon's infamous "Enemies List." She wore this badge proudly. In 1987 my mom was diagnosed with Alzheimer's. I was sure she could beat it. After all, she won every battle she ever fought...but she was no match for Alzheimer's. No one is. In 1992, this valiant lioness of a woman finally disappeared into the unforgiving chasm of Alzheimer's.

But I couldn't let this disease have the final word. So I wrote a play called "Surviving Grace" about a mother and her sitcom writer daughter's ordeal (a polite word) with Alzheimer's. Much like our personal battle, Grace is caught in Alzheimer's inescapable web. And much like our relationship, my play is laced with humor because that's how we got through life."



In Grace's Honor | Trish Vradenburg

Working: How does a funeral director work?

 "Slate’s L.V. Anderson interviews James Donofrio, a funeral director at Blair Mazzarella Funeral Home. Donofrio explains the effects of always being on the clock, how he prepares for an overseas funeral, and why a funeral director needs to know about every religion.

In a Slate Plus extra, Donofrio talks about a call he received to disinter 50 bodies, and where he gets the urns and stones used for his services. "



Working: How does a funeral director work?

Poem: What the Doctor Said

What the Doctor Said
by Raymond Carver


He said it doesn’t look good
he said it looks bad in fact real bad
he said I counted thirty-two of them on one lung before
I quit counting them
I said I’m glad I wouldn’t want to know
about any more being there than that
he said are you a religious man do you kneel down
in forest groves and let yourself ask for help
when you come to a waterfall
mist blowing against your face and arms
do you stop and ask for understanding at those moments
I said not yet but I intend to start today
he said I’m real sorry he said
I wish I had some other kind of news to give you
I said Amen and he said something else
I didn’t catch and not knowing what else to do
and not wanting him to have to repeat it
and me to have to fully digest it
I just looked at him
for a minute and he looked back it was then
I jumped up and shook hands with this man who’d just given me
something no one else on earth had ever given me
I may have even thanked him habit being so strong

"What the Doctor Said" by Raymond Carver from All of Us: Collected Poems

Understanding Grief

Signs of Death | 10 Signs of Death Approaching | Caring.com

"No one can predict the moment of death. But physicians and nurses involved in end-of-life care know that certain symptoms are usually associated with the body's shutting down. These signs of approaching death are specific to the natural dying process (apart from the effects of particular illnesses the person may have).

Not all dying symptoms show up in every person, but most people experience some combination of the following in the final days or hours:"



Loss of appetite, weakness, erratic breathing, withdrawal, and other signs are described in this very thoughtful article.



Signs of Death | 10 Signs of Death Approaching | Caring.com

On Learning How To Die: NPR

 "Longtime hospice nurse Barbara Karnes, for instance, advises those approaching their deaths to not put things off until a day or hour when they are feeling better. Assume, she suggests, that today is the best you're ever going to feel and attend to those activities and people who are priorities for you. We think that this is great advice, too, for those of us who have no reason to think our ends are near — because they actually could be, and also because we believe a good life means living your priorities and values as fully as possible at all times. To live them, you have to know them, and to know them, you have to spend time thinking about them."



On Learning How To Die : 13.7: Cosmos And Culture : NPR

Prepare for Death and Dying Wisely | It's OK to Die™

"Like it or not, we all die. But those who have made their peace with life and who have made clear plans in advance for death, find that the end of life may be transformed into a powerful time unlike any other. Preparation prevents suffering, but also creates opportunities for peace, closure and even healing. Here at OKtoDie.com, our goal is to educate and empower you with tools, checklists and resources. We want to hear your end-of-life stories and discuss your ideas or concerns. Whether you are visiting this site for yourself or another, we can prepare you. It can be OK to die."



Death preparation checklists



Prepare for Death and Dying Wisely | It's OK to Die™:

Complicated Grief: Q & A with Dr. M. Katherine Shear

For Jewish Students, Field Trip Is Window on Death and Dying - The New York Times

"“I thought I was cool about death,” one girl whispered to a classmate. “But this ——”

“This” meant more than the contents of the room, which is used at the Jewish funeral home for the body-washing ritual called tahara. It connoted the entire mini-course that she, along with the rest of Yeshiva High School’s graduating class, is taking about the Judaic practices and traditions surrounding death, dying and grief....Not content with her own years as a volunteer or with her book, Ms. Berman resolved to reach young people as a way of imbuing the next generation with those Judaic values. “It’s a gift to give them, a part of the Jewish life cycle they didn’t know about,” she said. “And once they know it, they’ll be the ambassadors in sharing it.”



For Jewish Students, Field Trip Is Window on Death and Dying - The New York Times

The Taxonomy of the Jewish Casket

I read a lot about the history of Jewish burial traditions but that desktop research felt rather abstract. Stepping next to the casket assembly line made my exploration immediately more tangible, more matter of fact. I wondered how many future casket owners were unaware at this very moment that their caskets were being built right then, in front of my eyes. I was immediately carried away by the details. And when it comes to Jewish caskets, the devil is indeed in the details: According to Jewish law, a casket must be made of wood — it must be completely free of metal. This really complicates the production process, and that’s where metal detectors come in handy. What’s more, every Jewish casket has holes in the bottom so that the earth can come through the wood. With the wood comes the earth, and with the earth comes the ultimate decay of the body. A lot of Jewish burial traditions, I learned, are designed to help us come to terms with mortality in ways that purposefully avoid consumerism. So why does New England Caskets produce so many beautiful caskets that often cost several thousand dollars? Apparently, there is a market for that.

The Assimilation of Jewish Caskets

How Not to Say the Wrong Thing -- by Susan Silk and Barry Goldman

Comfort in, kvetch out.

Draw a circle. This is the center ring. In it, put the name of the person at the center of the current trauma. For Katie's aneurysm, that's Katie. Now draw a larger circle around the first one. In that ring put the name of the person next closest to the trauma. In the case of Katie's aneurysm, that was Katie's husband, Pat. Repeat the process as many times as you need to. In each larger ring put the next closest people. Parents and children before more distant relatives. Intimate friends in smaller rings, less intimate friends in larger ones. When you are done you have a Kvetching Order. One of Susan's patients found it useful to tape it to her refrigerator. Here are the rules. The person in the center ring can say anything she wants to anyone, anywhere. She can kvetch and complain and whine and moan and curse the heavens and say, "Life is unfair" and "Why me?" That's the one payoff for being in the center ring. Everyone else can say those things too, but only to people in larger rings. When you are talking to a person in a ring smaller than yours, someone closer to the center of the crisis, the goal is to help. Listening is often more helpful than talking. But if you're going to open your mouth, ask yourself if what you are about to say is likely to provide comfort and support. If it isn't, don't say it.

From How Not to Say the Wrong Thing

How to Handle Family Dynamics Around a Dying Loved One | Judith Johnson

"While there are times when the motivations of family members for asserting their particular point of view regarding the "well being" of a critically ill loved one are self-serving at best, more often the motivation is love. Yet, terrible things are done in the name of love and the dynamics of power and influence that can develop among family and loved ones can be shocking. All too often, tensions escalate as judgments and discord fester, while no one knows how to step forward and lance the family wound by talking honestly and respectfully about differences of opinion and differing styles of response to the situation. Frequently, childhood politics surface and you suddenly find yourself the seven-year-old kid who used to be bullied by her older sister.

While everyone might sincerely believe that they all have the patient's best interest in mind, they may have diametrically opposed views about what that would look like and how it is to be accomplished. Unfortunately, all too often family members polarize against each other behind the scenes rather than uniting in support of the patient."



This article has many excellent guidelines: Having an opinion does not make you an expert (good advice in all situations).  Let the patient make as many decisions as possible.  Talk to family members about your concerns, not about other family members.



How to Handle Family Dynamics Around a Dying Loved One | Judith Johnson:

All-out care at end of life takes toll in agony, expense — and it’s worse in Dallas | Dallas Morning News

"Most medical practitioners argue that surgically inserted feeding tubes for such patients are uncomfortable, alienating and fruitless, requiring restraints and prolonging the course of dying rather than giving the patient more days of a life they would want to live.

But when indecision reigns, U.S. health care has a fallback position: Do everything.

"



All-out care at end of life takes toll in agony, expense — and it’s worse in Dallas | Dallas Morning News:

Holding the "Quiet Space" as a Loved One Dies

"My grandmother was dying. This much I knew and was at peace with. She had lived a beautiful 86 years and was ready to go to heaven and see loved ones that had already passed on. 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."



Love Is Always the Answer

Amy Dickinson — How to offer condolences? Readers answer.

"What would have been helpful (and what I do) is to tell the grieving person that their loved one mattered in your life. Even if you did not know the deceased that well you can share a good memory or story. People mistakenly think they shouldn’t remind grieving people of their loved ones, so they never talk about them again. In my experience grieving people like to know their loved ones are remembered."



Amy Dickinson asked readers to tell her what helped them when they were grieving.  All said the same -- be present for them.  Do not try to be philosophical or tell them how to grieve or when to stop.  Let them know that the person they lost mattered to you and if possible share a memory.  Just be there for them.

Toward Evidence-Based End-of-Life Care — NEJM

"The disquieting patterns of end-of-life care in the United States have been well documented. In the last month of life, one in two Medicare beneficiaries visits an emergency department, one in three is admitted to an intensive care unit, and one in five has inpatient surgery. But one of the most sobering facts is that no current policy or practice designed to improve care for millions of dying Americans is backed by a fraction of the evidence that the Food and Drug Administration would require to approve even a relatively innocuous drug.
For example, more than two thirds of U.S. states have implemented Physician (or Medical) Orders for Life-Sustaining Treatment (POLST/MOLST) programs despite the absence of compelling evidence that they improve patient outcomes.1 Even less evidence is available to support such well-intentioned private initiatives as the Institute for Healthcare Improvement Conversation Project, the efforts of the Coalition to Transform Advanced Care, the Gundersen Health System's Respecting Choices program, the widely used Five Wishes advance directive of the Aging with Dignity organization, and the services provided by for-profit companies such as Vital Decisions and Common Practice." Today, the central challenge is to avoid complacency regarding plausibly useful but non–evidence-based initiatives. Researchers, research sponsors, and large insurers, employers, and health systems can collaborate to advance knowledge about what works best for whom. And the sooner they do so, the better — before the lack of demonstrable return on investment or the need to focus on other matters dampens policymakers' current enthusiasm."



Toward Evidence-Based End-of-Life Care — NEJM:

Colorado University launches first master's program in interdisciplinary palliative care

"The strong current and future demand for palliative care specialists inspired the Colorado University Anschutz Medical Campus to offer the nation’s first master’s degree in interdisciplinary palliative care.

“We don’t train enough people in palliative medicine and palliative care,” said Amos Bailey, MD, who spearheaded the new program to be housed in the CU Denver | Anschutz Graduate School. “Nationally, we need an additional 5,000 full-time providers.”

Bailey said that number could actually require up to 18,000 trained healthcare professionals, depending on the proportion of time they can devote to hospice and palliative medicine practice."



CU launches first master's program in interdisciplinary palliative care - CU Anschutz Today

A Greener Way to Die - WhoWhatWhy

 "[T]he millions of gallons of toxic embalming fluid used to pretty up and “preserve” corpses eventually find their way into the ground, contaminating soil and water resources. And the iron, lead, copper, zinc, and cobalt used in caskets and vaults also contaminate the soil. Even cremation isn’t nearly as clean as you might think. Crematories release by-products from embalming fluid, dental fillings, surgical devices, etc.

Enter the “Green Burial” movement that advocates burying a body, without embalming, in a biodegradable container that allows direct immersion into the earth — and the body returns to the land and to the cycle of life."



A Greener Way to Die - WhoWhatWhy

"Junk Mail" -- Touching Short Film About Living Alone at 98

Junk Mail from Voyager on Vimeo.

Hospice helps loved ones grieve - Appeal-Democrat: News

 "Wolf Deno lost his wife, Diana, over a year ago. It's been hard, but he's had help.
Deno, 65, of Marysville was one of about 30 people at the annual Celebration of Life on Thursday organized by Sutter North Medical Foundation's Home Health and Hospice.
The event at Restoration Center Church in Yuba City is a gathering of families the organization has worked with during the past 13 months who have recently lost a loved one.
"Without the meetings, I don't know where I'd be," said Deno, of the weekly group meetings. "They give suggestions on what to do and break down the grieving process and help you find out where you are in the process. It helped immensely."
Deno, whose easy smile is hidden underneath an ample beard, said the meetings are an important part of the grieving process."



Hospice helps loved ones grieve - Appeal-Democrat: News

Talking to Your Doctor About How You Want to Die - Bloomberg Business

 ""Clinicians are going to need training because unfortunately, they don't get this in medical school," said Harriet Warshaw, executive director of the Conversation Project, a nonprofit initiative to encourage discussion about end-of-life wishes. While every doctor knows how to ask about allergies or family medical history, the process of talking about patients' wishes for their final days is less familiar and less comfortable.
"The idea is to take the time to really try to understand what’s important to the patient, what matters to them," said Joe Rotella, chief medical officer for the American Academy of Hospice and Palliative Medicine. "What is the patient’s experience of health care? What have they seen other people go through, and how did they feel about that?"
"



Talking to Your Doctor About How You Want to Die - Bloomberg Business

It Was Hard to Ask Her Dying Mother What Outfit She Wanted to Be Buried In

 "When she and my father had drawn up their burial contracts, she’d requested to be buried in a simple white shroud, in the Orthodox Jewish tradition known as tahara. Her pronouncement came out of the blue, as she was in fine health (for her age), but she was quite definitive. She’d even scribbled down her wishes on a scrap of paper and attached it to her copy of the contract.

A few weeks later, she told me she’d chosen the outfit, something she’d worn the previous week; a nice linen suit with a black skirt and black-and-white print jacket. Her description didn’t ring a bell.

“It’s what I wore to Daddy’s funeral,” she said. My father had died six years before. I filed the information away in the back of my mind, with some of the other details we’d talked about: “do not resuscitate”; no exceptional measures; burial, not cremation.

For weeks after that, the thought of the suit haunted me. Every Sunday when we’d meet for lunch, I’d want to bring it up, ask her to identify it in some way in her closet, even describe the jewelry she wanted to accessorize with. But I always found a way to put it off. I didn’t want to think about — no less talk about — death, not while she seemed so very much alive."



She finally figured out what was most important for her dying mother - The Washington Post



'via Blog this'

Some Things in Life Cannot Be Fixed. They Can Only Be Carried — Tim Lawrence

 "Let me be crystal clear: if you've faced a tragedy and someone tells you in any way, shape or form that your tragedy was meant to be, that it happened for a reason, that it 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.

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 dreams die, you grieve. When illnesses wreck you, you grieve.

So I’m going to repeat a few words I’ve uttered countless times; words so powerful and honest they tear at the hubris of every jackass who participates in the debasing of the grieving:

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

"



Everything Doesn't Happen For A Reason — Tim Lawrence

How to get what we need at the end of life - The Boston Globe

 "MY PATIENT – I’ll call her Mrs. Stein — had been crystal clear for the 12 years I took care of her. “I never want to end up in a nursing home — make sure you help me stay in my own home. I want to die in my own bed!”

A few years later, she had a stroke and her only option was a nursing home. She didn’t have enough money to pay out of pocket for 24-hour personal care at home, and neither Medicare nor Medicaid would cover it. Angry and depressed, she left for a neighborhood nursing home, where she lived another five years. I knew her wishes, but our society provided no means of honoring them.

In order to know what our patients prize most, we need to ask them, and then we must be able to act on what we learn."



How to get what we need at the end of life - The Boston Globe

Half a million dollars couldn’t buy my husband his life. But that didn’t stop me from trying. - The Washington Post

"Perhaps we need to create a new narrative that honors the graceful retreat as much as it celebrates the fight. To change regulations, like hospice reimbursement rules that now require a sharp break between treatment and letting go. To train doctors, nurses, clergy and ourselves to recognize that the end is as much a part of life as the beginning so that we can see it, not as an abrupt break, but as a gentle glide."



Half a million dollars couldn’t buy my husband his life. But that didn’t stop me from trying. - The Washington Post

11 Fascinating Books to Help Us Talk About Death and Dying | Off the Shelf

Allison Tyler has put together an excellent list of books and the important part is that these are not just books to read -- they are books to help us begin those difficult conversations.



11 Fascinating Books to Help Us Talk About Death and Dying | Off the Shelf:

Talking About #EOL Makes It Easier for Those Who are Dying and Those Who Love Them

“None of the families had ever talked with the parent about the parent’s perspective on dialysis and when to stop,” Hammes said. “Families were going to have to live with the question of ‘did I do the right thing for my mom or father?’ and they would never know the answer.” These patients had not gotten sick suddenly. They had long, progressive illnesses and had been in care at Gundersen for years — and no one had thought to begin that conversation. The lack of communication is often catastrophic for patients who do not want heroic measures. When family members don’t know a relative’s wishes, they often feel they must show their love by asking that everything be done. Anything short of the maximum seems like abandonment or betrayal. And that makes the choice also terrible for families. “I witnessed frequent and repeated moral distress that health professionals and families had making decisions when there were no good decisions,” Hammes said. “It was almost exclusively based on the fact that we didn’t know what the patient wanted.” Research shows that families who are unaware of a patient’s wishes suffer much more stress, anxiety and depression than those who are aware. “It was a difference of night and day,” said Hammes. “The difference it makes in people’s lives is so clear and big that not to do it seems cruel.” Hammes started a program to begin end-of-life conversations with dialysis patients and their families. Within two years, he said, almost all the families of dialysis patients knew their loved one’s wishes. In 1991, Gundersen set up a task force to spread the program throughout La Crosse, which included the Franciscan Hospital and the Skemp Clinic, alongside the Gundersen Lutheran Medical Foundation’s hospital and clinic. All four collaborated, along with nursing homes, hospices and smaller hospitals. The goal was not simply to have people fill out an advance directive and put it in their medical records. A written directive alone, members of the task force reasoned, could do more harm than good if it came as a surprise to the family, said Hammes. “We don’t think mom understood what she signed,” was a common response. Just as important as the legal document was a conversation with the patient and her family. The patient would need to understand the options — for example, that “do everything necessary to keep me alive” can mean intubation and cardiopulmonary resuscitation, which on a frail elderly person can break her ribs and sternum; those who survive it often do so with abdominal bleeding and neurological damage. And the family had to agree to support the patient’s decisions.

Talking Early About How Life Should End, NY Times

Thoughts on Turning Toward the Experience of Grief - Frank Ostaseski

SalonMake2 from Katrina Grigg-Saito on Vimeo.

My child is not in heaven: Your religion only makes my grief harder - Salon.com

 "October is Pregnancy and Infant Loss Awareness Month, and while there are countless parents grieving publicly via Facebook and Instagram, posting messages of how their babies have earned their place in heaven, those of us without organized religion are left on the sidelines. Some of us still refer to our babies as angels, though not the kind that float on clouds by pearly gates. We simply lack the language to describe our loss without resorting to theistic terms.

Agnostics and atheists understand why people have faith. We understand it brings them comfort. At times, I wish I could believe that my daughter is watching over me right now while enjoying a beautiful and eternal afterlife. But that’s just not what I believe. Instead, I imagine her in all sorts of places. Maybe her energy shot out into the stars. Perhaps some molecule of her is dancing around on Jupiter. Other times, I think about much of her remaining in my heart, as science tells us part of every child’s DNA remains forever with her mother, a fact that does bring me great peace.

Maggie’s physical remains are in a plastic, white box, swaddled in her hospital baby blanket, and placed inside my bedroom closet, still waiting for the day I am willing to part with them. I really don’t know what happened to her soul, if such things even exist. And while it may comfort you to say to me that my daughter is in heaven, it does absolutely nothing for me or for the countless others who don’t subscribe to your brand of faith — and that is okay."



My child is not in heaven: Your religion only makes my grief harder - Salon.com

Dalai Lama’s American doctor wants more compassion in medicine

A 5 Year Old Wants to Die At Home

The "slow motion horror story" of watching a child die is described by Michelle Moon, a neurologist, who blogs about Julianna, her five-year-old with a rare degenerative disease.

Last fall, we made the difficult decision to enroll in hospice. It didn’t feel right, but we were told that we could revoke it at any time. The plan was to try it out, get more support at home and go to the hospital again if she got sick. A few months after we started hospice, Julianna made it clear to us that she does not want to go to the hospital again. Like so many kids who have had to face life-threatening illness, she is wise beyond her years — but she is still only 4 years old. I do not think that she will survive another illness, especially without aggressive intervention.

Dr. Moon's "remarkable" conversations with her daughter about death and heaven are touching and inspiring. She makes sure that Julianna feels safe and loved. We thank Dr. Moon for sharing her story and keep the family in our thoughts.

Doulas: Doing Death Differently

"We are doulas of death. A birth doula provides support and guidance to the birthday mother and the brand new life. End of life doulas have forged an innovative approach to the care of the dying by putting emphasis on the importance of relationship and accompaniment. What we do is support. Practical and emotional support for those dying and their families.

We should all treat the dying with dignity, but also with deference. Our elderly and our ill should be allowed this as much during death as after birth. Our final moments should be treated with the same importance as those first few moments of life. Let us embrace the end as we embraced the beginning."



Doulas: Doing Death Differently | Death & the Maiden

A Better Way to Die and How Architecture Can Help -- Alison Killing

Explaining Withholding Treatment, Withdrawing Treatment, and Palliative Sedation

"Three terms that may arise in end-of-life care discussions are ‘withholding treatment’, ‘withdrawing treatment’ and ‘palliative sedation’. They are often misunderstood and sometimes confused with physician-assisted suicide or euthanasia.  Understanding these terms can assist in decision-making and ensuring quality of life.

Palliative care is about achieving the best quality of life until the end of life.  Each person’s situation, experience of illness, goals of care and approach to care are unique. Many factors influence the decision to withhold treatment, withdraw treatment or make use of palliative sedation. Each requires discussion and agreement between the patient and health care providers. If patients are not able to participate in these discussions, family members or substitute decision-makers are involved on their behalf.   "



Explaining Withholding Treatment, Withdrawing Treatment, and Palliative Sedation

With The Conversation Sabbath, Dozens Of Clergy Hope To Get People Talking About Death

 "For a 10-day period beginning Nov. 6, the Old South Church is one of more than 30 Christian, Jewish and Buddhist communities in Boston and a handful more across the country that will observe the Conversation Sabbath, an occasion for communities of faith to have honest discussions about mortality, grief and the end of life.

"



With The Conversation Sabbath, Dozens Of Clergy Hope To Get People Talking About Death

The Greening Of Death: The Argument For Resting In Peace With The Planet

"Greening Death: Reclaiming Burial Practices and Restoring Our Tie to the Earth," is a look at the history of the modern funeral industry and the growth of a small movement to change a "death denying culture" that separates bodies from natural decay in the earth."



The Greening Of Death: The Argument For Resting In Peace With The Planet

The deviousness of dementia | Dasha Kiper | Society | The Guardian

A beautiful essay by Dasha Kiper about living with a man who is losing his memory.



"Dementia not only affects the minds of its victims; it also creates a world so fragmented, so skewed and redundant – so indifferent to normal rules of behaviour – that caregivers unwittingly become part of the madness. And this, unfortunately, is what the doctors and the guidebooks offering counsel to caregivers often fail to notice. Because we automatically posit a clear distinction between caregiver and patient, between the normal and the abnormal, we don’t see that the true burden for caregivers is, in fact, the absence of such a divide. When a loved one loses cognitive purchase, it’s not only his or her world that begins to unravel, but the caregiver’s as well."



The deviousness of dementia | Dasha Kiper | Society | The Guardian

UK's first dementia friendly checkout opens in Chester | Granada - ITV News

"At the Chester branch of Tesco, the country's first dementia friendly checkout has opened.

The checkout is clutter-free and a big sign shows which coin is which.

Every member of staff who works on the till has attended a Dementia workshop."



UK's first dementia friendly checkout opens in Chester | Granada - ITV News

I’m a doctor. Preparing you for death is as much a part of my job as saving lives. - Vox

"I believe we owe it to our patients to have open, honest conversations about what the future holds. Patients and families need to be informed in order to make decisions that are in line with their values.

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.

"



I’m a doctor. Preparing you for death is as much a part of my job as saving lives. - Vox

A Message of Hope for the Bereaved from Ligia M. Houben

"Your loved one's memory does not live in the pain of your grief."

"In the beginning, grief is a fog; a thick, dense, and never ending barrier between you and the world as you once knew it. At one point you figured it would lift, as fog tends to do, but after days and then weeks spent under its heavy cloak, you begin to wonder if it’s become a part of your everyday life. In those moments, you might have thought, “All I want is to feel better,”  because you want to feel normal, whatever that may mean to you. Yet the simplicity of a ‘normal’ existence seems unfathomable.  Impossible even.

Then one day you look around and realize you can see a little  further in front of you, things are more colorful, and they’re coming into clarity.  The days start getting a little bit easier, the nights a little more restful.  The tears come a little less and things like laughter, joy, and gratitude are once again a part of your emotional repertoire.  The smallest sliver of light cuts into the dark and you realize that this must be what ‘healing from grief’ looks like.  You also realize, that progress doesn’t feel as sweet as you imagined.

“Something feels off,”  you say to yourself. “I should feel better about feeling better.”  

Grief is funny, you know? You desperately want it to go away, except for sometimes when you don’t want it to go away."



What's your grief?