Monday, November 30, 2015

One of Us -- Wendell Berry

One of Us 

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.

Sunday, November 29, 2015

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

Friday, November 27, 2015

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?


• 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.

Wednesday, November 25, 2015

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 na├»ve. 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

Monday, November 23, 2015

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.”"

Sunday, November 22, 2015

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

Saturday, November 21, 2015

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

Thursday, November 19, 2015

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?

Wednesday, November 18, 2015

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

Monday, November 16, 2015

Understanding Grief

Signs of Death | 10 Signs of Death Approaching |

"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 |

Sunday, November 15, 2015

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, 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™:

Saturday, November 14, 2015

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

Friday, November 13, 2015

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

Thursday, November 12, 2015

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:

Monday, November 9, 2015

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.

Saturday, November 7, 2015

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

Thursday, November 5, 2015

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

Wednesday, November 4, 2015

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

Tuesday, November 3, 2015

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

Monday, November 2, 2015

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:

Sunday, November 1, 2015

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