Wednesday, October 28, 2015

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

 "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 -

Dalai Lama’s American doctor wants more compassion in medicine

Tuesday, October 27, 2015

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.

Friday, October 23, 2015

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

Thursday, October 22, 2015

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

Wednesday, October 21, 2015

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

Tuesday, October 20, 2015

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

Monday, October 19, 2015

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?

Anticipatory Grief | Kansas City Hospice & Palliative Care

 "When a loved one is seriously ill or dying, you may feel the pain and sorrow of anticipatory grief.  It’s normal to feel shocked or devastated. A diagnosis of terminal illness may set off complex emotions in the family, ranging from fear to depression.  Make the most of the time you have left with your loved ones by learning to deal with these feelings.

Anticipatory grief is how you feel and react when your loved one is seriously ill, and it can be just as intense as the grief felt after a death. It’s a normal process, although not every person experiences it.  Grieving now does not mean that you will feel more or less grief after death. Every person reacts differently.

You may experience fear, guilt or anxiety. You may fear being alone, fear losing your independence or your social life. These fears are not limited to family and caregivers and even the dying person may feel a sense of fear and isolation.

Anticipatory grief is often combined with the exhaustion that comes with being a caregiver. You are aware of the coming death and accepting it will come, bringing a sometimes overwhelming anxiety and dread.

It’s not just death for which you grieve. During sickness you grieve any loss of abilities and independence, loss of cognition, loss of hope, loss of future dreams, loss of stability and security, loss of identity and more.  This grief is not just about accepting the future death, but of the many losses already occurring as an illness progresses.

There can be a positive side to anticipatory grief. It can help family members prepare for what will happen after death, giving you the opportunity to spend time with your loved ones, express love and even forgiveness, and to figure out how to let go."

Anticipatory Grief | Kansas City Hospice & Palliative Care

Sunday, October 18, 2015

Barbara, the whole story

Created by nurses at Guy's and St Thomas' to raise awareness of dementia among staff, Barbara's Story is a series of 6 films which has changed attitudes to dementia in hospitals across the world.

This film tells the story of how and why we made Barbara's Story and includes a condensed version of all 6 episodes.

Every one of us will be affected by dementia in some way during our lives. Wherever we live, whatever we do, dementia is a universal issue.

The Lonely Death of George Bell - The New York Times

"Each year around 50,000 people die in New York, some alone and unseen. Yet death even in such forlorn form can cause a surprising amount of activity. Sometimes, along the way, a life’s secrets are revealed."

One of the most important (and viral) news stories of the year is N.R. Kleinfield's story of George Bell, a solitary man who died alone in his NewYork apartment and was not discovered for several days.  Kleinfield writes about the many, many city services called into action.  The diligence and grace of all involved, including Kleinfield, is very touching.

The Lonely Death of George Bell - The New York Times

Friday, October 16, 2015

Stephanie Rainey - Please Don't Go

A Dying Neurosurgeon's Exquisite Message To His Daughter

A doctor speaks about his terminal illness and the joy he gets from his new baby.

"Our daughter was born days after I was released from the hospital. Week to week, she blossoms: a first grasp, a first smile, a first laugh. Her pediatrician regularly records her growth on charts, tick marks of her progress over time. A brightening newness surrounds her. As she sits in my lap smiling, enthralled by my tuneless singing, an incandescence lights the room.

Time for me is double-edged: Every day brings me further from the low of my last cancer relapse, but every day also brings me closer to the next cancer recurrence -- and eventually, death. Perhaps later than I think, but certainly sooner than I desire. There are, I imagine, two responses to that realization. The most obvious might be an impulse to frantic activity: to "live life to its fullest," to travel, to dine, to achieve a host of neglected ambitions. Part of the cruelty of cancer, though, is not only that it limits your time, it also limits your energy, vastly reducing the amount you can squeeze into a day. It is a tired hare who now races. But even if I had the energy, I prefer a more tortoiselike approach. I plod, I ponder, some days I simply persist.

Everyone succumbs to finitude. I suspect I am not the only one who reaches this pluperfect state. Most ambitions are either achieved or abandoned; either way, they belong to the past. The future, instead of the ladder toward the goals of life, flattens out into a perpetual present. Money, status, all the vanities the preacher of Ecclesiastes described, hold so little interest: a chasing after wind, indeed.

Yet one thing cannot be robbed of her futurity: my daughter, Cady. I hope I’ll live long enough that she has some memory of me. Words have a longevity I do not. I had thought I could leave her a series of letters -- but what would they really say? I don’t know what this girl will be like when she is 15; I don’t even know if she’ll take to the nickname we’ve given her. There is perhaps only one thing to say to this infant, who is all future, overlapping briefly with me, whose life, barring the improbable, is all but past.

That message is simple: When you come to one of the many moments in life when you must give an account of yourself, provide a ledger of what you have been, and done, and meant to the world, do not, I pray, discount that you filled a dying man’s days with a sated joy, a joy unknown to me in all my prior years, a joy that does not hunger for more and more, but rests, satisfied. In this time, right now, that is an enormous thing."

A Dying Neurosurgeon's Exquisite Message To His Daughter

Changing The Way We Mourn: Laura Prince at TEDxGoldenGatePark (2D)

Thursday, October 15, 2015

Saying Goodbye: A Jewish Ritual Made Personal and a Sense of Completion

Finding a Jewish Ritual to Say Goodbye

Susan Duhan Felix, Artist, talks about the Jewish rituals that took place when her beloved husband passed away.

Posted by G-dcast on Wednesday, August 5, 2015

Tuesday, October 13, 2015

Monday, October 12, 2015

The gift of near death: Lewis Brown Griggs at TEDxAmericanRiviera 2012

Catch and Release - Finding Life in Death: Michael Fratkin at TEDxEureka

Feel Your Grief

Whatever’s there to feel, feel it – the riddance, the relief, the fright and freedom, the fear of forgetting, the dull ache of your own mortality. Get with someone you can trust with tears, with anger, and wonderment and utter silence. Get that part done – the sooner the better. The only way around these things is through them. ~Thomas Lynch, The Undertaking: Life Studies from the Dismal Trade

Sunday, October 11, 2015

Compassion and Support, Not Pity and Correction, Please - Headspace Perspective

 "Some of the classic platitudes can close off a conversation. They can make me feel that my opinion and experiences are not valid, or that the person I am speaking to doesn’t want to hear me talk about them.

That can cause a sense of isolation, drive a wedge, and foster resentment. It’s not pleasant for anyone.

Sometimes all you can do is listen, or offer a hug. If you do feel the need to speak, ask an open question (“What does that mean?”, “Would you like to tell me more?”) or simply say you don’t know what to say.

There’s no escaping the fact that these conversations can be uncomfortable. But let’s remember your discomfort lasts only for a short while – and such compassion, understanding, and empathy will mean so much to the grieving person.

What I need most from people is compassion and support, not pity or correction please."

Compassion and Support, Not Pity and Correction, Please - Headspace Perspective

Inspired Goodbyes | What to say when someone dies

"It’s important to remember that people don’t feel grief for just a few weeks after bereavement. It goes way beyond the initial busy period of arranging family flowers and funeral cars. It doesn’t go away a month after the funeral, either. In fact, grief can sometimes only hit people properly 6 to 12 months after the actual death. When the family and friends have gone home, the flowers have wilted and the phone stops ringing that’s when many find it hardest.

If you don’t know what to say, you can simply say you don’t know what to say. Don’t cross the street, don’t avoid their calls and don’t make excuses. If you know someone who has lost a loved one call them today. Pop round for a cup of tea. Get in touch somehow and just say you’re sorry, sorry somebody they love has died. Remember it’s not about you, it’s about them. "

Inspired Goodbyes | What to say when someone dies

Oral history: The last days of Harold Nickelsberg

A touching oral history, with photos, of the last days of the life of the life of the photographer's father. The comments from the hospice workers are especially touching.

“When my father awoke at 7 a.m., I happened to be in the room, in the middle of this crisis, with a camera,” Robert Nickelsberg wrote in an email. He was recounting the last days of his father, Harold Nickelsberg, who died at the age of 98 on Christmas Day 2014. Robert, a photojournalist, is best known for his work covering conflicts in Afghanistan, Kashmir and Iraq.

In October of 2014, his father fell at home and was taken to the hospital, where an MRI revealed that a hematoma from an earlier, more serious fall was putting pressure on Harold’s brain. In December he began having seizures and was taken to the hospital. After he was released, Robert, his youngest son, arrived at 2 a.m. in San Juan Capistrano, California, where Harold had retired.

“He was surprised to see me,” Robert’s email continued, “gave a genuine smile, asked about the flight and soon expressed an appetite for some food. I started to take pictures, partially out of my nervous reaction to a crisis I felt was going out of control and the need to document this and to stay useful in some way. To create something from this chaos. It’s what I do.”

During Harold’s brief stay at the hospital, it became clear to Robert that when his father returned home, it would have to be to in-home hospice care. Robert arranged for a hospital bed to be put in the den and for a team of nurses to provide round-the-clock care.

Like Harold, the vast majority — about three-quarters — of Americans say they want to die at home, but only 20 percent to 25 percent do. Over the past 10 years, hospice care has become an increasingly popular option for the terminally ill."

Oral history: The last days of Harold Nickelsberg | Al Jazeera America

Inmates help other prisoners face death in hospice program - Houston Chronicle

"As late-morning sun streams through narrow prison windows, convicted killer Scott Abram stands beside a fellow inmate, speaks quietly to him and starts singing "Amazing Grace." The prisoner appears to smile, but it's difficult to gauge his response. He is dying.
He passes away two days later in early September.
Abram is a counselor trained in a national ministry program who sees his volunteer work as part of his own growth. Behind bars since the early 1990s for murder, he has gotten used to spending time with male prison friends as they die in rooms 205 or 206 on the second floor of the state's prison for chronically ill inmates."

Inmates help other prisoners face death in hospice program - Houston Chronicle

Five Wishes: how does an advance directive help my family?

Saturday, October 10, 2015

Lessons from a hospice nurse: Alia Indrawan at TEDxUbud

Do You Remember Love - movie trailer

“Death doesn’t come like it does in the movies:” What my mother’s last days taught me about our right to die -

Rebecca Lanning writes about the "terminal agitation" her mother suffered in her last days.

"When my friends ask how I’m doing, I say, “I am full of grilief.” Grief for what my mom endured. Relief that it’s finally over. Grilief.....

Before Mom’s cancer took her down the “difficult road,” my sisters and I had never given assisted dying much thought. If I’d heard about a proposal to give doctors the right to prescribe lethal doses of painkillers to terminally ill patients with less than six months to live, I wouldn’t have opposed it, but I might not have considered it an essential and deeply humane piece of legislation, as I do now. I still recognize the medical and religious reasons many hold for opposing it, but having watched someone I love suffer at the end the way my mother did, I could not in good conscience feel anything but gratitude toward this measure. We don’t know if Mom would have wanted a physician-assisted death if it had been available in our state. But watching her die — knowing that there are so many others out there who suffered longer and without hospice support — made us wish that everyone at least had the option.

One of the great accomplishments of 21st-century medicine is our ability to mitigate and abbreviate pain, to spare patients needless anguish. When we were caring for Mom at home, a hospice nurse brought us a “comfort pack” of medications, which we stored in the refrigerator and used to ease her pain, delirium and anxiety — common symptoms in terminally ill patients. Once she was taken to the hospice facility, the nurses administered these medications under a doctor’s supervision. But because her symptoms were constantly shifting and magnifying, the dosages changed too, and it soon became impossible for my family to distinguish which of Mom’s symptoms were due to the disease process and which were due to side effects of the meds. We agonized over her agony, and I wondered why, if there were medications available to “cure” Mom, to completely eliminate her suffering and transport her with love to her ultimate destination, should she not have the right to that medication if she wanted it? Having watched what she went through, I would certainly want it for myself.

Everyone knows that death is inevitable, but we don’t spend enough time talking about the reality of it. Death doesn’t come like it does in the movies. You don’t always say something profound, close your eyes, and drift away. Death can be protracted, ugly and painful, and we can’t remove grief from the process of dying and letting loved ones go. But surely we can pass laws to give people the option to die without suffering needlessly."

“Death doesn’t come like it does in the movies:” What my mother’s last days taught me about our right to die -

My Father's Shockingly Typical Death | Randi Hutter Epstein, MD, MPH

 "The logical part of me realizes the stupidity of it all, but I couldn't fight the feeling that my dad was too unique to end his life typically. I couldn't stop thinking that my dad, who saw life as one long competition, would find a way to die better than everyone else. Certainly not in an Alzheimer's ward, withering away and increasingly dependent, just like the other patients."

My Father's Shockingly Typical Death | Randi Hutter Epstein, MD, MPH

Friday, October 9, 2015

How hospices care for the dying - BBC News

"The UK has been named as the best country in the world at providing end-of-life care. Much of this work is done by hospices. How do they bring comfort to patients and their families?...It's currently Hospice Care Week and the Economist Intelligence Unit has named UK end-of-life care the best in the world. About 30% of people dying the UK receive help at some stage from hospices, with about one in 10 people dying in one of the beds they provide. Many of the remaining patients die at home.

As well as end-of-life care, hospices provide palliative care, controlling symptoms such as pain or breathlessness early on in an illness, and respite care - admitting the patient for a period so that relatives get a break from looking after them. They offer work-shadowing experience to NHS doctors and nurses."

How hospices care for the dying - BBC News

Her Long Illness by Donald Hall

Her Long Illness 
by Donald Hall 

          Daybreak until nightfall,
he sat by his wife at the hospital
          while chemotherapy dripped
through the catheter into her heart.
          He drank coffee and read
the Globe. He paced; he worked
          on poems; he rubbed her back
and read aloud. Overcome with dread,
          they wept and affirmed
their love for each other, witlessly,
          over and over again.
When it snowed one morning Jane gazed
          at the darkness blurred
with flakes. They pushed the IV pump
          which she called Igor
slowly past the nurses’ pods, as far
          as the outside door
so that she could smell the snowy air.

Thursday, October 8, 2015

As I lay dying - LA Times

 "Promise me, I told my friends and family, that you'll never say that I died after “fighting a courageous battle with breast cancer.” This tired, trite line dishonors the dead and the dying by suggesting that we, the victims, are responsible for our deaths or that the fight we were in was ever fair.

Promise me you'll never wear a pink ribbon in my name or drop a dollar into a bucket that goes to breast cancer “awareness” for “early detection for a cure,” the mantra of fund-raising juggernaut Susan G. Komen, which has propagated a distorted message about breast cancer and how to “cure” it."

Laurie Becklund also calls for less money for "awareness" and more for data-driven research.  And not telling patients that they have "failed" therapies or "lost the fight."

As I lay dying - LA Times

Dying Dad Fulfills Final Wish By Walking Children Down the Aisle

"Given just a few months to live by his doctors in August, Ken McHugh got busy, putting the wheels in motion for a plan he’d dreamed of fulfilling ever since he was diagnosed with stage-4 pancreatic cancer five years ago: walking his kids down the aisle, since he won’t be able to be present whenever their future weddings take place.

And on Oct. 3, in their hometown of Chester Springs, Penn., the former international businessman, 47, fulfilled his dream. Celebrating what the McHughs called a “family wedding,” Ken walked his four teenagers — daughters Samantha, 19; Julia, 15; and Kathryn, 14; and son, Dylan, 17 — to the altar, where he then renewed his own vows with his wife of 20 years, Tammy. It was a touching and painful tribute to the family’s love, for better and for worse. "

Dying Dad Fulfills Final Wish By Walking Children Down the Aisle

Wednesday, October 7, 2015

Jerry Brown’s amazingly humble, humane right-to-die decision.

The Governor of California explains why he signed the right-to-die legislation: "I do not know what I would do if I were dying in prolonged and excruciating pain. I am certain, however, that it would be a comfort to consider the options afforded by this bill. And I wouldn’t deny that right to others."

Jerry Brown’s amazingly humble, humane right-to-die decision

‘Double Tap for Caleb’: Mourning a 13-Year-Old YouTube Star on Instagram

"We all deal with tragedy in different ways, and Instagram hashtags represent something that’s not as much new as it is newly visible. Mourning hashtags make it possible not only to easily share grief, but to view collective grief all at once, in a backlit tapestry of public despair. #RIPCaleb is a sad place to scroll through, and one made sadder by the lack of information about Caleb’s sudden death. Commenters—who must be confused about the concept of death to begin with—are using some of the most popular posts as forums in which to share their own theories, such as:

“He had a panick attack, his heart stopped beating [emojis] everyone sub to them”
“Did he have hart problems?”
“people are saying it’s because he had an anxiety attack and went to sleep then he never woke up beaus of heart failure or something. but that’s just what everyone is saying.”

After spending the morning viewing post after post about this tragic death, there’s one I just can’t shake: a short video uploaded by a girl who appears to be a good friend of Caleb’s sister Annie. It’s a heartbreaking video, and one of the strangest things I’ve ever seen on the internet. In it, she confirms the rumors of Caleb’s death to her 10.6 thousand followers, offers emotional support, and shares an optimistic sentiment about Caleb’s legacy.

It’s captioned, simply, “@presshandstands”—the username of Annie Bratayley."

‘Double Tap for Caleb’: Mourning a 13-Year-Old YouTube Star on Instagram

To Live Until You Die - Dr Elisabeth Kubler-Ross

How Mongolia Pulled Ahead in The Economist's Quality-of-Death Index - The Atlantic

"Britain may not be the best place to live, but it is the best place to die.

The Economist Intelligence Unit (EIU) ranked the country first in its latest quality-of-death index, which uses 20 quantitative and qualitative indicators to measure the effectiveness of end-of-life care in 80 countries. The measures include the the quality of palliative care, affordability, the health care environment, and community engagement.

How we die is becoming a critical topic as populations live longer, often with multiple diseases requiring complex (and costly) management. Developing countries in particular grapple with how to deliver basic pain relief to the dying. Some have seen notable improvements in recent years: Uganda has dramatically increased the availability of morphine through a public-private partnership between the health ministry and Hospice Africa, a British charity.

Not surprisingly, rich countries generally did better than poor ones in the rankings. But there are noteworthy variations: the U.S. came in ninth place with a score of 80.8 (out of 100), far below the 93.9 score achieved by Britain, where complaining about health care is as popular as grumbling about the weather."

How Mongolia Pulled Ahead in The Economist's Quality-of-Death Index - The Atlantic

Canada needs to develop standards for Goals of Care conversations - Healthy Debate

"The process of determining my Grandma’s preferences for specific medical treatments in the face of illness is known as Advanced Care Planning, which is discussed as part of a larger Goals of Care conversation. These discussions attempt to focus on a shared understanding of the patient’s values and treatment preferences to develop advanced directives aligned with the patient’s goals and wishes. When patients engage in advance care planning they are more likely to receive palliative care and appropriate end-of-life care in the community. As a result, they are more likely to die at home or in their LTC facility rather than in hospital, and have improved quality of life and satisfaction with their end-of-life care. They also have a reduced likelihood of receiving hospital care and a reduced number of days spent in the hospital. Conversely, poor communication leads to increased incidence of hospital admissions, medical errors, and poor health outcomes.

But this critically important discussion, and the seemingly simple definition of what constitutes a Goals of Care conversation is as infinitely complex as the patients who we have them with. Like many things in medicine, it requires a specialized skill set requiring training and experience. And herein lies the inherent conflict – determining a patient’s preferences for treatment is something all physicians do, yet our degree of training and perspectives on who should determine them can vary widely.

The result is that there is huge variability in how these conversations are conducted, and no established guidelines from experts in the field on how to conduct them."

Canada needs to develop standards for Goals of Care conversations - Healthy Debate

Tuesday, October 6, 2015

More to dying than meets the eye: Martha Atkins at TEDxSanAntonio 2013

From Mourning to Memory: Chasing Balloons, Wearing a Ring | Southern

 "I went to the jewelry store and purchased this ring with a meaningful engraving inside. At first it was awkward to wear, but day by day it became more normal. Part of me. Now the ring does exactly what I hoped it would do for me: it keeps my father in my life. When I’m scared, angry, frustrated, worried, elated, in any kind of emotional moment, I find myself reaching for my ring. It’s almost as if I had my father there with me, helping me through."

From Mourning to Memory: Chasing Balloons, Wearing a Ring | Southern

The people who make last wishes come true - BBC News

 "Earlier this year a photograph was released showing a woman on a stretcher in Amsterdam's Rijksmuseum. She was there to take a final look at her favourite Rembrandt painting. Her visit had been made possible by a Dutch charity that helps terminally ill patients fulfil their last wish.
"I've learned that people who are going to die have little wishes," says Kees Veldboer, the ambulance driver who founded the Stichting Ambulance Wens - or Ambulance Wish Foundation - after an impulse to help a patient."

... "Our youngest patient was 10 months old, a twin. She was in a children's hospice and had never been home - her parents wanted to sit on the couch with her just one time. "And our oldest patient was 101 - she wanted to ride a horse one last time. We lifted her on to the horse with the help of a truck, and later we moved her to a horse-drawn carriage - she was waving at everyone like royalty. That was a good wish," says Veldboer.

The people who make last wishes come true - BBC News

Monday, October 5, 2015

California to Allow Assisted Death

California Governor Jerry Brown signed legislation that makes California the fifth state to allow terminally ill patients to legally end their lives using prescription drugs. The bill passed September 11th after a previous version failed.

The visualization above shows physician-assisted suicide by state.

Data Curated by and sourced from ProCon Euthanasia.

Sunday, October 4, 2015

Grief--The Price We Pay for Love

Grief is the price we pay for being close to one another. If we want to avoid our grief, we simply avoid each other. ~Thomas Lynch

Friday, October 2, 2015

Living with Death, Dying with Life: The Story of an Incredible Journey: Joyce Burlingame: 9781490898964: Books

"Diagnosis: Terminal cancer. That was the shot that launched their journey. Joyce Burlingame, former teacher, pastor's wife, and mother, spent the next nine months caring for her husband and watching the many ways God proved Himself as they faced the inevitable. From Columbia, South Carolina, to heaven's gates, God's unfailing love was unmistakable."

Living with Death, Dying with Life: The Story of an Incredible Journey

Thursday, October 1, 2015

For Breast Cancer Awareness Month: The CDC estimates that more than 200,000 women are diagnosed with breast cancer each year in the U.S. Below see the incidence rate of breast cancer by state, the incidence and mortality rate of breast cancer, and the amount of research funding allocated toward breast cancer research in the country.

The data is curated by and sourced from, the National Cancer Institute and NIH.