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