Thursday, December 31, 2015
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...
Wednesday, December 30, 2015
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.
Monday, December 28, 2015
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
Sunday, December 27, 2015
Saturday, December 26, 2015
My Turn : AJN The American Journal of Nursing
Embracing the Call to Become a Death Midwife | Roberta Verdant
This App Will Help You Sort Through Your Views On Dying
Wednesday, December 23, 2015
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.
Tuesday, December 22, 2015
"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
"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
Monday, December 21, 2015
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:
Saturday, December 19, 2015
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
Friday, December 18, 2015
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.
Thursday, December 17, 2015
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
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
Sunday, December 13, 2015
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.
Friday, December 11, 2015
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
This report is an excellent resource.
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
Thursday, December 10, 2015
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?
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.
Wednesday, December 9, 2015
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.
Friday, December 4, 2015
Thursday, December 3, 2015
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
Monday, November 30, 2015
Sunday, November 29, 2015
"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
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.
IF YOU BECAME CRITICALLY ILL?
• 66% say being comfortable and living without pain.
• 60% say ensuring that family isn’t burdened by tough decisions.
• Just 7% say receiving all the care possible to prolong life.
For more information.
Wednesday, November 25, 2015
Mothering My Dying Friend - The New York Times:
"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
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
"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
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
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
I was naïve. But today, in my role as an end of life doula, I can sometimes come close. If I’m able to make a difference to the end of someone’s life, I feel grateful and thoroughly privileged.
Getting to this position has been to follow long and wandering path, with the obstacles and diversions that life presents slowing me down. But it was a path that led from his death and my decision. That experience, that loss, is the reason I am an end of life doula.
Neil Gaiman wrote: I’ve been making a list of the things they don’t teach you at school. They don’t teach you how to love somebody. They don’t teach you how to be famous. They don’t teach you how to be rich or how to be poor. They don’t teach you how to walk away from someone you don’t love any longer. They don’t teach you how to know what’s going on in someone else’s mind. They don’t teach you what to say to someone who’s dying. They don’t teach you anything worth knowing.
There is nothing on Earth – nothing inevitable, anyway – that we are prepared for less than death, and I just don’t understand why that is. Where is our guidance for this? This thing that every single one us will have to face?"
Why I Became An End of Life Doula | Once I've Gone
Monday, November 23, 2015
Doctors are waiting too long to tell patients death is near
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, 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:
Sunday, November 22, 2015
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
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
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
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
Not all dying symptoms show up in every person, but most people experience some combination of the following in the final days or hours:"
Loss of appetite, weakness, erratic breathing, withdrawal, and other signs are described in this very thoughtful article.
Signs of Death | 10 Signs of Death Approaching | Caring.com
Sunday, November 15, 2015
On Learning How To Die : 13.7: Cosmos And Culture : NPR
"Like it or not, we all die. But those who have made their peace with life and who have made clear plans in advance for death, find that the end of life may be transformed into a powerful time unlike any other. Preparation prevents suffering, but also creates opportunities for peace, closure and even healing. Here at OKtoDie.com, our goal is to educate and empower you with tools, checklists and resources. We want to hear your end-of-life stories and discuss your ideas or concerns. Whether you are visiting this site for yourself or another, we can prepare you. It can be OK to die."
Death preparation checklists
Prepare for Death and Dying Wisely | It's OK to Die™:
Saturday, November 14, 2015
“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
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
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
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
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
Love Is Always the Answer
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
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:
“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
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
Friday, November 6, 2015
Thursday, November 5, 2015
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
"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
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'
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
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
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:
Sunday, November 1, 2015
“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
Thursday, October 29, 2015
Wednesday, October 28, 2015
Agnostics and atheists understand why people have faith. We understand it brings them comfort. At times, I wish I could believe that my daughter is watching over me right now while enjoying a beautiful and eternal afterlife. But that’s just not what I believe. Instead, I imagine her in all sorts of places. Maybe her energy shot out into the stars. Perhaps some molecule of her is dancing around on Jupiter. Other times, I think about much of her remaining in my heart, as science tells us part of every child’s DNA remains forever with her mother, a fact that does bring me great peace.
Maggie’s physical remains are in a plastic, white box, swaddled in her hospital baby blanket, and placed inside my bedroom closet, still waiting for the day I am willing to part with them. I really don’t know what happened to her soul, if such things even exist. And while it may comfort you to say to me that my daughter is in heaven, it does absolutely nothing for me or for the countless others who don’t subscribe to your brand of faith — and that is okay."
My child is not in heaven: Your religion only makes my grief harder - Salon.com
Tuesday, October 27, 2015
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
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
Thursday, October 22, 2015
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
The Greening Of Death: The Argument For Resting In Peace With The Planet
Wednesday, October 21, 2015
"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
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
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
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 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