March 10, 2017

Bikers honor the dying and the dead

Bikers Heard This Marine's Remains Were Coming Home In A Box. They Couldn't Let That Happen

 Patriots Guard

The Patriot Guard Riders is an organization whose members attend the funerals of the military, firefighters, and police at the invitation of a decedent's family. The group forms an honor guard at military burials, helps protect mourners from harassment and fills out the ranks at burials of indigent and homeless veterans. In addition to attending funerals, the group also greets troops returning from overseas at homecoming celebrations and performs volunteer work for veteran's organizations such as Veterans Homes.

 Staff Sergeant Jonathan Turner

With a military career that included seven tours of duty in both Afghanistan and Iraq, USMC Staff Sgt. Jonathan Turner served the United States for 17 years as a Marine. But when Turner passed away in California due to combat-related issues, his mother — who still lives in the Turners' hometown of College Park, Georgia — couldn't afford the cost of traveling to the west coast to retrieve his ashes.Instead, Turner's ashes would be shipped home.

That didn't sit well with Patriot Guard riders, so they stepped up by creating a caravan and personally escorting Turner's remains all the way across the country. It was an operation that involved hundreds of volunteers and thousands of miles ridden...."We didn't want him to go home in a Fed Ex box."

A Man's Dying Wish: 'To hear the roar of a Harley, one last time'

Bill Conklin, a hospice patient in Boise  had one last wish of hearing the roar of a Harley Davidson, one last time.
Conklin told his nurse a while back about his wish, who helped get the ball rolling. "Guess what?" asked Teri Jordan, Conklin's nurse. "Your wish has come true."

Surrounding his home were about 50 Harleys and bikers ready to unleash the sound Conklin was waiting for. The sound filled the entire block while excitement filled Conklin's body and heart. "My feet are numb, my hands are numb, and my back is burning like fire," he said.  To us, it may just be a sound, but to him, it was the best medicine he could get. ...

Conklin says the bikes brought back many great memories. He was so appreciative of the display, Conklin made it an important duty of his to shake every hand he could get to, saying thanks before the bikers took off.
Posted by Jill Fallon at 12:10 PM | Permalink

September 12, 2016

Four Final Fish

U.S. Navy Veteran Catches Final Fish As Dying Wish

U.S. Navy Veteran Connie Willhite was taking a turn for the worst in his battle with cancer. A patient of the Carl Vinson VA Medical Center in Dublin, Georgia, he had two final wishes before the cancer took his life: To be baptized and to catch one more fish.

His family organized the baptism. Greg Senters, his hospice social worker, organized the last fishing trip Willhite would ever take.  Senters supplied the bait and the gear and they set off to the nearby pond located behind the VA Medical Center. Given Willhite's grave condition, the staff wasn't sure he'd be able to catch a fish, but they wanted to give him an opportunity to try.

He caught four fish from his hospital bed.

-Dying-Wish-One-Last-Fish

While he was catching those fish, Willhite's face lit up and he was truly at peace. "All of a sudden, the cancer and everything else went away," Senters said. "What you see is that precious few moments of someone really enjoying life."
Posted by Jill Fallon at 12:05 PM | Permalink

"The waves get higher and higher, and eventually, they carry the person out to sea.”

In the Atlantic, What It Feels Like to Die

“Do you want to know what will happen as your body starts shutting down?”

My mother and I sat across from the hospice nurse in my parents’ Colorado home. It was 2005, and my mother had reached the end of treatments for metastatic breast cancer. A month or two earlier, she’d been able to take the dog for daily walks in the mountains and travel to Australia with my father. Now, she was weak, exhausted from the disease and chemotherapy and pain medication.

My mother had been the one to decide, with her doctor’s blessing, to stop pursuing the dwindling chemo options, and she had been the one to ask her doctor to call hospice. Still,  we weren’t prepared for the nurse’s question. My mother and I exchanged glances, a little shocked. But what we felt most was a sense of relief.
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What does dying feel like? Despite a growing body of research about death, the actual, physical experience of dying—the last few days or moments—remains shrouded in mystery. Medicine is just beginning to peek beyond the horizon.
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For those who do die gradually, there’s often a final, rapid slide that happens in roughly the last few days of life—a phase known as “active dying.” During this time, Hallenbeck writes in Palliative Care Perspectives, his guide to palliative care for physicians, people tend to lose their senses and desires in a certain order. “First hunger and then thirst are lost. Speech is lost next, followed by vision. The last senses to go are usually hearing and touch.”
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“As the brain begins to change and start to die, different parts become excited, and one of the parts that becomes excited is the visual system,” Hovda explains. “And so that’s where people begin to see light.”
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This half-dreaming, half-waking state is common in dying people. In fact, researchers led by Christopher Kerr at a hospice center outside Buffalo, New York, conducted a study of dying people’s dreams. Most of the patients interviewed, 88 percent, had at least one dream or vision. And those dreams usually felt different to them from normal dreams. For one thing, the dreams seemed clearer, more real. The “patients’ pre-death dreams were frequently so intense that the dream carried into wakefulness and the dying often experienced them as waking reality,” the researchers write in the Journal of Palliative Medicine.

Seventy-two percent of the patients dreamed about reuniting with people who had already died. Fifty-nine percent said they dreamed about getting ready to travel somewhere. Twenty-eight percent dreamed about meaningful experiences in the past. (Patients were interviewed every day, so the same people often reported dreams about multiple subjects.)

For most of the patients, the dreams were comforting and positive. The researchers say the dreams often helped decrease the fear of death. “The predominant quality of pre-death dreams/visions was a sense of personal meaning, which frequently carried emotional significance for the patient,” they report.
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“It’s like a storm coming in,” Hallenbeck says. “The waves started coming up. But you can never say, well, when did the waves start coming up? … The waves get higher and higher, and eventually, they carry the person out to sea.”
Posted by Jill Fallon at 12:01 PM | Permalink

September 5, 2016

Meaning and purpose in hospice

91-Year-old Knits Hats For Homeless While in Hospice Care

Morrie Boogart isn’t letting anything stand in his way of helping those less fortunate – even the skin cancer that’s put him in hospice care.  The 91-year-old of Grandville, Michigan has knitted over 8,000 hats for the homeless during the last 15 years.  Even though he spends his days fighting the cancer and a growth on his kidney, Morrie never stops stitching.  “Why do I do it? It just makes me feel good.” Boogart told WXMI. “This has been the best thing that’s happened to me because I just stay in my room.”  The crates of caps are to be delivered to homeless shelters throughout Grand Rapids in October.

 Morrie-With-Loom-Fox
Still knitting on his deathbed

Posted by Jill Fallon at 7:33 PM | Permalink

July 17, 2016

The daily work of a hospice nurse

The daily work of a hospice nurse, who treats the physical, psychological, and spiritual needs of people at the most vulnerable point of their lives,  A Tender Hand in the Presence of Death by Larissa MacFarquhar in The New Yorker.

Heather Meyerend is a hospice nurse who works in several neighborhoods in South Brooklyn—Sheepshead Bay, Mill Basin, Marine Park, Bensonhurst, Bay Ridge. She usually has between sixteen and twenty patients, and visits each at home once a week, sometimes more. Some patients die within days of her meeting them, but others she gets to know well, over many months. She sees her work as preparing a patient for the voyage he is about to take, and accompanying him partway down the road. She, like most hospice workers, feels that it is a privilege to spend time with the dying, to be allowed into a person’s life and a family’s life when they are at their rawest and most vulnerable, and when they most need help. Some hospice workers believe that working with the dying is the closest you can get on earth to the presence of God.

 Heather Macfarquhar Hospice Nurse

PHOTOGRAPH BY EUGENE RICHARDS FOR THE NEW YORKER
Heather sits with Florence, who was 100 years old when this photograph was taken. Whenever Heather enters a patient’s home for the first time, she knows that she is walking into a long, long, complicated story that she understands nothing about, a story that is just then reaching its final crisis.
Posted by Jill Fallon at 5:51 PM | Permalink

April 23, 2015

What A Small-Town Obituary Writer Can Teach Us All About Living

What A Small-Town Obituary Writer Can Teach Us All About Living

Heather Lende has an intimate relationship with death.  She is the longtime obituary writer in her small Alaska hometown of Haines, having memorialized some 400 departed locals, neighbors, friends. She volunteers at the hospice center, and had her own close brush with oblivion. Ten years ago, Lende was hit by a truck while bicycling; the vehicle ran over her torso and crushed her pelvis. She was lucky to survive.
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Her latest book, out April 28, is "Find the Good: Unexpected Life Lessons from a Small-Town Obituary Writer." We spoke with Lende for Sophia, a HuffPost project to collect life lessons from accomplished people.

She shared 10 key insights she's learned from her years of observing people living well and dying well, too.  Among them  -

1. The under-appreciated joy of ordinary days.
I said to her, "You've got maybe three months, six months while you're still feeling good. What do you want to do with your life?"  And she said the thing she really wanted to do was just have another ordinary day. She wanted to go to school, and teach second grade, and come home and have dinner with her family…..

It's kind of like "Our Town" by Thornton Wilder; at the end of that play, the character Emily runs around and says, "Does anybody really appreciate life while they have it? Do they know?" And no, of course not. Of course not. But the more I bump up against that kind of stuff, I try [laughs]. I try to remember it.

I think you can purposefully step back from stuff and say that to yourself. "Oh yes, thank you. Thank you just that I'm awake this morning."
Posted by Jill Fallon at 10:03 PM | Permalink

March 13, 2015

Honoring their dying wishes no matter how unusual

In the NYT.  A Hospice volunteer writes about Their Dying Wishes

I’ve purchased lottery tickets and fetched bialys from Zabar’s, the specialty grocery store on Broadway. I’ve scored weed in the Village for an 80-year-old doctor with lung cancer and schlepped it by subway to the Upper West Side. I rolled its sticky green leaves into a thin joint and watched her relax for the first time since I met her. I’ve read all 150 chapters of Psalms in one sitting and written tactful letters to childhood friends. I’ve bought Champagne for last birthdays and white carnations, their smell harking back to some unstated but precious memory from years gone by. Once, when Hostess briefly discontinued Twinkies, I scoured a dozen delis in Brooklyn for the cream-filled, spongy yellow cakes. I finally found a carton on eBay.

Some of the final wishes brought true for terminally ill patients by Dutch hospice

This 77-year-old woman, from Heemskerk, enjoyed a last look at a self-portrait by Rembrandt in the Rijksmuseum, Amsterdam.

 Final Wishes Dutch-Hospice

Cancer patient Mario, 54, says goodbye to the giraffes at Rotterdam Zoo, whose enclosure he used to clean

 Dying Man Giraffe

Posted by Jill Fallon at 11:52 PM | Permalink

March 2, 2015

The visions of family members at the time of death

Dr. Jared Bunch explores the spiritual visits at the time of death of his heart patients in Strengthening Experiences from Patients while Dying

Another rationale that I have heard is we develop hallucinations of family members near death because these come from stored memories that are pleasant to us.  For example, in a time of stress we may envision our mother who was a source of comfort to us when we were children.  This would account for similar experiences in diverse individuals when the brain is deprived of oxygen.  I have had a few experiences that have made me doubt this rationale.

The most interesting came from a man who was dying of chronic lung disease.  His lungs had become heavily scarred with fibrosis and could no longer exchange oxygen well.  I was leaving the hospital one afternoon and he asked if I would come in and talk.  We ended up talking for about 3 hours.  He was an extremely successful businessman and had grown to love developing and serving his employees more than growing his company.  He said he always wanted to be there for his employees.  He was like a father to many of his employees and had personally supported some of their children through school, paid for weddings, helped in times of crisis, etc. 

He told me he never had a father.  His biologic father was abusive and left his mother alone when he was a small child.  He said he hated his father for what he had done and as a consequence had spent his life becoming the opposite of his father.   During his hospital stay he decided to enroll in hospice and start the dying process.  As we made preparations for him to return to his home and die he shared on last experience with me.  The night before his father had come to him.  He told him he was sorry, that he loved him, and that he wanted to help him now.  My patient said that he felt an overwhelming love for his father immediately and that all his hatred and anger was gone.  He said he did not realize that he needed to forgive his father and that now he was completely ready to die.

He died within a week of returning to his home.  Our hospital put up the newspaper of his obituary that highlighted the life of a man who was defined by service and love.  I have thought back upon this experience.  If his brain was hallucinating and he needed comfort, then why bring up images of a person he did not know and professed to hate?  To me, his mother who was his true companion in this life would have been the person that his brain would have associated with comfort and peace.
Posted by Jill Fallon at 2:42 PM | Permalink

February 14, 2015

Glimpses of the Life Beyond Life. Over 8 million Americans with near death experiences

Glimpses of the Life Beyond Life The evidence is becoming overwhelming.

Author and journalist Judy Bachrach started volunteering in a hospice in the late 1980s, and her real motive was to try to overcome her fear of death. About two decades later, when her mother came down with Alzheimer’s, Bachrach decided to look into the subject of near-death experiences.

So she delved into the literature, and journeyed around the United States and the world to interview near-death experiencers (NDErs or, as she calls them, “death travelers”) and leading researchers in the field. The result is her book Glimpsing Heaven. Her conclusion from her inquiries: “there are simply, as some of the doctors and scientists I’ve interviewed point out, too many experiencers and too many experiences to discount.”

How many? Dutch cardiologist and NDE researcher Pim van Lommel says that in the last 50 years over 25 million people worldwide have reported NDEs. A 1982 Gallup poll found eight million Americans reporting them. As Bachrach comments: “Not every self-proclaimed death traveler could be an arrant liar or deeply unbalanced or both.” If you want to hear accounts by “travelers” who are evidently balanced, mature, and intelligent, you can easily find them on YouTube.
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Although there are accounts of NDE-type phenomena going back to Plato, over the past 50 years advanced resuscitation (CPR) techniques have enabled vastly larger numbers of people to return from death. The experience is usually blissful—and changes them dramatically. They lose all fear of death, care much less about material pursuits, and turn to spiritual and altruistic activities instead. They often have enhanced psychic, intuitive, or creative powers; and often—altered as they are—end up divorcing. Pretty powerful effects for hallucinations.

Bachrach tells the story of one of the most remarkable NDE cases, singer-songwriter Pam Reynolds Lowery (1956-2010). In 1991, doctors had to remove a large aneurysm from the base of her brain. She was put in the deepest possible state of sedation: blood drained, body cooled to 60°F, eyes taped shut, ears plugged. Yet, in the midst of the major, difficult operation, something happened that “shouldn’t have”: the patient felt herself rise out of her body, watch the medical staff working on her, then rise further to a transcendent realm where she encountered a “shower of light” and deceased relatives.

Subsequently, when Pam Reynolds Lowery described the operation to the doctors—in finely accurate detail—they were aghast. And in the aftermath of her death travel, her intuitive powers were so great that she had to stop going to public places; it can be unpleasant to read the thoughts and emotions of total strangers waiting in line at the supermarket.

Embedded in the post is a ten-minute excerpt of a BBC video that features Pam Reynolds Lowery and her story.  She had her near death experience in 1991 at age 35.  She  died from heart failure in 2010, age 53

Posted by Jill Fallon at 12:25 PM | Permalink

October 20, 2014

Glimpses of the afterlife?

Top brain surgeon who claims he saw heaven while in a coma reveals the stories of others who say they have had similar life-changing experiences

Neurosurgeon Dr Eben Alexander was convinced out-of-body experiences were hallucinations — until he went into a coma himself and had what he now believes was a glimpse of heaven.  In this second extract from his book The Map Of Heaven, Dr Alexander, who has taught at Harvard Medical School, reveals many others have also seen what he described.
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A man called David experienced exactly that, when his father died. With his three siblings, he was sitting in a private room at a hospice where his dad had been for 13 days. They had kept a constant bedside vigil, and it was plain that the end was near.  At 4am, with the room in darkness except for a single night-light in the wall, their father took his last breath — and as he did, a speck of glowing dust seemed to settle on his temple. It was like a pinprick of gold.

No light was shining on the old man’s face, yet this particle of dust was vivid and luminous. As David watched, it began to swell into a pea-sized orb. Now it was a translucent blue, like the light underneath a candle flame. White rays sparkled from it.

The orb lifted, hovered, and then drifted across the room, still effervescing with sparks, until it disappeared through the ceiling. David followed it with his eyes, not daring to speak, until it was gone — and then he turned to one of his sisters. ‘Did you see that?’ he asked.

His sister said: ‘You mean that light that just came out of the side of Dad’s head?’
Posted by Jill Fallon at 4:58 PM | Permalink

October 9, 2014

Two young women face death in different ways

Cancer patient Brittany Maynard, 29, has scheduled her death for Nov. 1 She is suffering from a malignant brain tumor, stage 4 and wants to die "on her own terms" in Portland where she and her family relocated because Oregon law allows terminally-ill patients to end their lives. She is using her last days to advocate for physician-assisted suicide and explains her choice in  My right to death with dignity at 29.

Kara Tippets, a woman of faith and a mother of four, writes a blog called Mundane Faithfulness and just published on October 1, The Hardest Peace: Expecting Grace in the Midst of Life's Hard.  Diagnosed with breast cancer at 36 which two years later has metastasized into her entire body and into her brain, Kara posted an open letter to Dear Brittany : Why We Don't Have to Be So Afraid of Dying & Suffering that We Choose Suicide.

………So hear these words from a heart full of love for you.

Brittany, your life matters, your story matters, and your suffering matters. Thank you for stepping out from the privacy of your story and sharing it openly.

We see you, we see your life, and there are countless lovers of your heart that are praying you would change your mind.

Brittany, I love you, and I’m sorry you are dying. I am sorry that we are both being asked to walk a road that feels simply impossible to walk.
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Dear heart, we simply disagree. Suffering is not the absence of goodness, it is not the absence of beauty, but perhaps it can be the place where true beauty can be known.

In your choosing your own death, you are robbing those that love you with the such tenderness, the opportunity of meeting you in your last moments and extending you love in your last breaths.
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Brittany, when we trust Jesus to be the carrier, protecter, redeemer of our hearts, death is no longer dying. My heart longs for you to know this truth, this love, this forever living.

You have been told a lie. A horrible lie, that your dying will not be beautiful. That the suffering will be too great.
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I pray they reach the multitudes that are looking at your story and believing the lie that suffering is a mistake, that dying isn’t to be braved, that choosing our death is the courageous story.

No – hastening death was never what God intended.

But in our dying, He does meet us with His beautiful grace. The hippocratic oath matters, and those that are choosing to walk away from it need to be challenged.

These two women illustrate two very different approaches to suffering and death.  Brittany doesn't want to put herself or her family through protracted suffering and fears she would become resistant to pain-killers and linger on in hospice.  By choosing physician-assisted suicide, she is seeking some control over her death.

Kara is a remarkable witness to how faith can transform suffering into 'Big Love'.  As she writes in Kept

Here is my hope, here is my heart. There are certainly people who vehemently disagree with my stance on this. Can we speak kindly to one another in our disagreement. We are talking about possibly the most tender moment in the life of another- let’s care for one another as we disagree with gentleness.

I’m bringing as much love to this topic as I am able.  And, of coarse my faith is intertwined. If I believe something- wouldn’t it be an unkindness for me not to want to share it with another. I believe each breath of Brittany matters, is important, is seen. I want her to know I love her, my faith asks me to share my love. My big love matters. And I pray it will meet her- not the endless unkindness that surround her. This is not a Kara vs. Brittany issue. This is one broken and sick woman looking upon another and saying she matters.
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This is not a simple journey. These steps towards my last breath are not simple, easy, fearless, but we are kept. We are carried. Our story matters. Our brokenness is seen.

Yes she evangelizes and if your heart is not hardened, you can hear what she says

I would say before cancer I was a shy evangelist. But now- now that I know there is a limit to my days- I’m giving what was never mine to keep. Why would I hold tightly to this Jesus that asks me to open my hands and pour out His big love. Why? No- I delight that I get this opportunity to share the love I know. If I were in this bed, and you knew unbelievable, overwhelming, overflowing, unbelievable love and you didn’t share it with me- Well friends- I simply can’t be quieted. I have love to share.

"The extreme greatness of Christianity lies in the fact that it does not seek a supernatural remedy for suffering
but a supernatural use for it,"
  Simone Weil.

Posted by Jill Fallon at 11:21 PM | Permalink

August 2, 2014

Wine bar in Gallic hospice

French hospital to open wine bar for terminally ill patients

A French hospital is to open a wine bar for terminally ill patients in an unprecedented but characteristically Gallic way to improve their quality of life.  Patients at the Clermont-Ferrand University Hospital in central France will be able to take part in "medically supervised wine-tasting" sessions.  They will be allowed to invite friends or family over for a drink.

Dr Virginie Guastella came up with the idea because she believes that patients "are entitled to enjoy" their last days.  Patients enthusiastically supported the plan, which has been approved by the authorities. "Why should we deprive people reaching the end of their lives of the traditional flavors of our land?" Dr Guastella said.

The bar will open in September in the hospital's Palliative Care Centre…and stock a range of wines donated by local people. It will also serve whisky and champagne.  If the bar proves successful, doctors at Clermont-Ferrand hope the idea will be taken up by other hospitals in France.
Posted by Jill Fallon at 12:02 PM | Permalink

June 14, 2014

His last time in his beloved woods

One Last Look

Snohomish County Firefighters recently responded on a mission of mercy to an elderly hospice patient, and former forest ranger who wished once more to see his beloved great outdoors.

Working with hospice, firefighters granted that wish, wheeling the man up and down forest paths, much to his delight as he took in the sights, sounds, and smells of the Pacific Northwest.

 Hospice-In-Woods

Posted by Jill Fallon at 12:56 AM | Permalink

May 7, 2014

Spiritual Caregivers for the Dying

To the dying, spiritual caregivers can be godsend

They do not prescribe medication, plump up pillows, or serve soothing broths, but for hospice patients €” and their families spiritual caregivers often ease the pain that hurts the most.  The emotional comfort comes first from the companionship, accepting people exactly where they are, acknowledging as they certainly know themselves that they are coming to the end of life and being able to reassure them that it is OK to die, said Rabbi Herman Blumberg, rabbinic director of Hebrew SeniorLife Hospice Care.

Spiritual care has always been a part of hospice programs, but chaplains interviewed for this article report that patients and their families increasingly recognize the need to heal the mind and soul, even as the body is failing. Behind this trend, they say, is that people are less likely now than in the past to view spirituality as the exclusive realm of religion.
Posted by Jill Fallon at 10:51 AM | Permalink

November 25, 2013

"Dying without hospice would be like having surgery without anesthesia."

Why Is Hospice Often Delayed?

The stays in hospice remain far too short despite their amazing benefit to patients and families.  One surgeon said, "Dying without hospice would be like having surgery without anesthesia."  One cause of delay in hospice referral is the Medicare requirement that all curative attempts be stopped on entry into hospice.  Medicare has been delayed in initiating a trial to allow continuation of curative attempts while in Hospice.  It remains understandably hard to make the mental and emotional switch from the curative mode to the comfort measures only mode.

Many are unaware that their insurance plan may offer hospice benefits under the age of 65, and also pre-hospice benefits may be available for those wishing to continue curative efforts.  One of the newest specialties in medicine is Palliative Care - those who take a holistic view of the patient, focus on symptoms and comfort measures while taking into account all the variables like spiritual beliefs, other specialties involved, family dynamics, etc
Posted by Jill Fallon at 9:03 PM | Permalink

October 7, 2013

What people talk about when they are dying

My Faith: What people talk about before they die

Today, 13 years later, I am a hospice chaplain.  I visit people who are dying – in their homes, in hospitals, in nursing homes.  And if you were to ask me the same question - What do people who are sick and dying talk about with the chaplain?  – I, without hesitation or uncertainty, would give you the same answer. Mostly, they talk about their families: about their mothers and fathers, their sons and daughters.

They talk about the love they felt, and the love they gave.  Often they talk about love they did not receive, or the love they did not know how to offer, the love they withheld, or maybe never felt for the ones they should have loved unconditionally.  They talk about how they learned what love is, and what it is not.    And sometimes, when they are actively dying, fluid gurgling in their throats, they reach their hands out to things I cannot see and they call out to their parents:  Mama, Daddy, Mother.
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This crucible of love is where we start to ask those big spiritual questions, and ultimately where they end....We don't learn the meaning of our lives by discussing it.  It's not to be found in books or lecture halls or even churches or synagogues or mosques.  It's discovered through these actions of love.

If God is love, and we believe that to be true, then we learn about God when we learn about love. The first, and usually the last, classroom of love is the family.
Posted by Jill Fallon at 12:15 PM | Permalink

June 27, 2013

Catholic Hospice provides Jewish end-of-life care

Rabbis from Catholic Hospice have been serving patients in the L'chaim Jewish Hospice program for 10 years.

"We recognized a need because of the large Jewish population in South Florida," said Gael Silverman, director of professional services for L'chaim Jewish Hospice. Catholic Hospice plans to open two facilities that will care for Jewish patients. One facility will be in western Broward County and the other will be in southern Miami-Dade County. The program also plans to add several rabbis who will serve assigned areas.

A young Jewish woman was Catholic Hospice's first patient when the Sisters of Mercy started the hospice under the auspices of the Catholic Archdiocese of Miami in 1988. The L'chaim Jewish Hospice program was born in 2003. The Archdiocese's Catholic Health Services took over Catholic Hospice in 2010.

"A Jewish tradition of care, of always putting the patient first," makes the missions of Catholic Hospice and its L'chaim program very similar, said Bonnie Alkema, Catholic Hospice executive director.

Alkema said Catholic Hospice began training its patient care staff in Judaism's "underlying foundation" and traditions in 2008. "End of life is so important. Those traditions and knowledge affect how you end your life, how you die and what you need at the time of death," she said.

Rabbi Ira Eisenman, who joined L'chaim Jewish Hospice 18 months ago, provides pastoral care and offers "counsel, comfort and advice" to patients. "I am there to answer questions and help them get through a very difficult situation and ease their [emotional] pain, if I can," he said.

Commenting on the Catholic-Jewish relationship, Eisenman said, "Our relations couldn't be better. Catholic Hospice itself is a family. We're all working together toward one goal — the best possible treatment of our patients and their families.
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"It's a two-way street," Eisenman added.

"The religious question has always been what happens after death," he said. "It has never been [about] what's hanging on the wall."

L'chaim Jewish Hospice removes crosses and crucifixes from the patient's room, if requested.
Posted by Jill Fallon at 9:28 AM | Permalink

June 13, 2013

Recovering the Art of Dying

Recovering the Ars Moriendi

Throughout the history of the world, most people—like the women at the tomb—encountered death on a near daily basis. Death’s brutality over the greater part of the last two millennia cast a long shadow over everyday life as disease, famine, and infant mortality claimed victim after victim. For Christians of yesteryear, this familiarity with the pungent reality of death brought the hope of resurrection into sharp relief, not just in old age, but at every stage of life.

By contrast, Americans have largely outsourced death and dying over the last 150 years, gradually banishing it from sight and thought. Coincidentally, over the same period, many American evangelical groups have adopted a near myopic emphasis on expiation in their discussions (and presentations) of the gospel message. In a culture that sanitizes death and dying while simultaneously and self-reflectively obsessing about guilt, the need for forgiveness trumps the need for resurrection.
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Artistically, John Donne’s famous poem “Death Be Not Proud” paints a picture of death’s emasculation in the face of resurrection.  For centuries, familiarity with death gave Christian writers, pastors, theologians, and artists cause to address death and dying from a Christian perspective—not as an intellectual abstraction, but as tangible reality. Although an omnipresent human experience, the resurrection meant death held no power for Christians and therefore, they lived and died differently than other people. Rob Moll thinks they still should.

In his book, The Art of Dying: Living Fully into the Life to Come (IVP, 2010), Moll urges American Christians to re-familiarize themselves with death that we may revive the ars moriendi—the art of dying

From the book's description.

Rob Moll recovers the deeply Christian practice of dying well. For centuries Christians have prepared for the "good death" with particular rituals and spiritual disciplines that have directed the actions of both the living and the dying. In this well-researched and pastorally sensitive book, Moll provides insight into death and dying issues with in-person reporting and interviews with hospice workers, doctors, nurses, bioethicists, family members and spiritual caregivers. He weighs in on bioethical and medical issues and gives guidance for those who care for the dying as well as for those who grieve.

This book is a gentle companion for all who face death, whether one's own or that of a loved one. Christians can have confidence that because death is not the end, preparing to die helps us truly live.
Posted by Jill Fallon at 6:32 PM | Permalink

May 20, 2013

Relearning the art of dying

We need to relearn the art of dying

The taboo has simply shifted, however. As the door to the bedroom has been thrown open, access to the deathbed has been barred. No one seems to linger long there, conversationally or otherwise: too often, a death is treated like an embarrassing fact, a regrettable failure of life that is best hushed up.

As Dr Granger carried on talking, with admirable courage and lucidity, I began to feel that whatever tweets she felt able to send from her deathbed would be well worth reading, and might do the rest of us a great deal of good. She already has a blog, on which she discusses matters such as planning her own funeral, the vagaries of end-of-life care, and the irritations of the faintly bullying, upbeat language that people use when describing cancer patients. There, she writes with passion, humour and honesty, but without self-pity or mawkishness: none the less, when I got to the point at which she made comforting plans for her final hours – “I want Mum to read to me like she used to when we were kids” – it was impossible not to cry.

We are built to cling to life, unless that instinct is withered in us through long suffering, extreme altruism or despair, and so when we read about the deaths of other people, we are moved partly because we start imagining our own: the pain of leaving the people we love, and their confusion at our departure. Or we think of the helplessness of watching someone we love slipping beyond our reach. The notion of death is so mysterious and enormous that, in many cases, it seems easier just to lock it away, although it has a way of escaping and sneaking up on our peripheral vision.
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Still, the option of pretending to ignore death (for a period of our lives, at least) has not been available to the bulk of humanity throughout history. In the 15th century, when the Ars moriendi, or “Art of Dying”, was written, the book desperately sought to popularise the concept of a “good death”, partly because – in the aftermath of the Black Death – an early demise was so frequent and lurid that some kind of etiquette guide was required. Both real-life accounts and novels were later preoccupied with the deathbed scene, which was, in many ways, the dramatic high point of a person’s life. It was their moment in which to forgive, regret, recant or curse, the final deal, the instant at which they revealed their essential self, and onlookers were unashamedly interested in it.

I can never think of the deaths of those I knew and loved, even those who were very old, without some small recurrent aftershock, some fresh sense of the overwhelming strangeness of their disappearance. The ritual of mourning and the ceremony of the funeral or memorial provides shapes for grief to stumble into, yet even those are designed primarily to comfort the living. What our society presently lacks – save for a few enlightened homes and hospices – is much structured means of comforting the dying, who are too often abandoned in hospital wards surprised by fear and pain.
Posted by Jill Fallon at 2:29 PM | Permalink

March 18, 2013

When dealing with hospice and the end of life cuts close

Two people, knowledgeable and experienced in end-of-life issues for other people, deal with those terrible questions personally.

For a Hospice Pioneer, Still a Tough Call

Mr. Brenner’s voice had already weakened when I spoke with him briefly a couple of weeks ago. He was only 73, but 18 months of declining health and months spent in hospitals and nursing homes had sapped his strength. Still, when I asked how many people he thought he had helped to die, I could hear a quiet pride in his response. “Oh, thousands,” he said.

For more than 25 years, starting in the late 1970s when the word “hospice” still drew blank looks (and years before hospice became a Medicare benefit), Mr. Brenner led nonprofit hospice organizations. Yet when his health faltered, choosing to become a hospice patient himself proved unexpectedly difficult. That’s what I wanted to talk about.

A Mother's Death Tested Reporter's Thinking About End-Of-Life Care

My father and sister looked to me for my thoughts. In our family, after all, I'm the go-to guy for all things medical. I've been a health care reporter for 15 years: at the The Dallas Morning News, Los Angeles Times and now ProPublica. And since I have a relatively good grasp on America's complex health care system, I was the one to help my parents sign up for their Medicare drug plans, research new diagnoses and question doctors about their recommended treatments.

In this situation, like so many before, I was expected to have some answers. Yet none of my years of reporting had prepared me for this moment, this decision. In fact, I began to question some of my assumptions about the health care system.....

We knew her end-of-life wishes: She had told my dad that she didn't want to be artificially kept alive if she had no real chance of a meaningful recovery. But what was a real chance? What was a meaningful recovery? How did we know if the doctors and nurses were right? In all my reporting, I'd never realized how little the costs to the broader health care system matter to the family of a patient. When that patient was my mother, what mattered was that we had to live with whatever decision we made. And we wouldn't get a chance to make it twice.
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I asked Fisher: Did he consider what my family did a waste of money?  No, he said. And he wouldn't have found fault with us if we decided to keep my mom on a ventilator for another week or two, although he said my description of her neurological exams and test results sounded pessimistic.

"You never need to rush the decision-making," he told me. "It should always be about making the right decision for the patient and the family. … We have plenty of money in the U.S. health care system to make sure that we're supporting families in coming to a decision that they can all feel good about. I feel very strongly about that."
Posted by Jill Fallon at 1:18 PM | Permalink

September 22, 2012

The rookie mistake of a new hospice nurse

From Codeblog, tales of a nurse.  She made a Rookie Mistake at her new hospice job.

In ICU, if you are actively dying, you look terrible.  In most cases, people dying in the ICU are there because we were or are trying to save their life.  This requires some treatments that cause other problems.  The fluids and medications we give cause pretty severe swelling.  Add in mechanical ventilation and the patient may even end up with scleral edema – where the whites of the eyes fill with fluid from pressure and swell to the point of not allowing the eyelids to fully close…..That is what dying looked like to me for 14 years. Turns out it’s a pretty exaggerated version of how it is when people naturally die without life-saving interventions.

On my second night out sans preceptor, I was called to a house early in the evening to help with symptom management.  I was told that the patient was minimally conscious and was starting to have labored breathing.  The family had started giving oral morphine liquid to help with this and were panicking about the whole thing a little.  I went and assessed the patient.  She was mostly unconscious, her breathing a little labored.

The family’s greatest concern was that she was going to die that night.
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They asked me if I thought it would be that night.  Honestly, despite being unconscious and breathing a little differently… ok, maybe her color wasn’t great, but it wasn’t awful – her feet felt only the tiniest bit cool and weren’t discolored at all (there was no mottling, which is when the skin becomes discolored and blotchy).  Compared to what I was used to seeing in patients who were dying, she didn’t look too bad.
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A dying person’s condition can change very rapidly.  This is different from what I’m used to for sure.  The ICU course follows a fairly predictable pattern most of the time.  Not so predictable outside of the hospital!
Posted by Jill Fallon at 12:23 AM | Permalink

July 24, 2012

"Less than one in seven CPR recipients live to leave the hospital"

What is the goal of palliative care?

Most of us do not want to die in the ICU tethered to tubes — not the quality of life we expect. Yet only 30 percent of us have made arrangements to prevent this from happening. Death and dying is a tough subject for us to broach. Be aware that very few of us will die in our sleep — most have a slow sometimes excruciating decline to death.

As we get older it  becomes important to have a family discussion about what to do if you’re incapacitated in the hospital with not much hope of recovery. Advanced directives such as Do Not Resuscitate (DNR), a Living Will, or Durable Power of Attorney are important decisions to make. Providers are trained to go to heroic efforts to keep patients alive even when all hope is gone.  This often results in severe pain and suffering. There have been many horror stories of the pain and suffering from brittle ribs broken during CPR.

I bet you didn’t know that less than one in seven CPR recipients live to leave the hospital (don’t feel bad, many doctors don’t know this). Other studies show that few elderly patients or patients with cancer live to leave the hospital after CPR. Despite the fact that CPR was developed to resuscitate patients in cardiac arrest, CPR is mandatory to rescue the terminally and critically ill, unless there is an advanced DNR directive. One in five people die in intensive care with the last few months of life being expensive, painful, and futile exercises in medical care.

Thanks to palliative care medicine, doctors as well as medical students are being taught the importance of saying the ”D”-word.  Palliative (or comfort) care differs from hospice care in that it can happen along with aggressive life-sustaining treatments. Palliative care teams of doctors,  nurses, and social workers provide patients and families with the information they need to make painful choices, including decisions to avoid overly invasive care.  What patients and their families want is for doctors to be clearer and more realistic about what’s going on.

The aim of palliative care is for patients to live as well as long as possible while preparing them and their families for death.
Posted by Jill Fallon at 11:39 AM | Permalink

June 18, 2012

Create peace and dignity at the end of life

Dr. Monica Williams-Murphy Create peace and dignity at the end of life

A huge gap exists between what Americans want for end-of-life care and what they actually receive. 90% of people wish to die at home, yet nearly 80% of us actually die in institutions (hospitals and nursing homes.)

So, how did we end up here? How have we tolerated such an extreme disconnect between our desires and our reality? Such a profound disconnect is fundamentally un-American....This crisis was unintentionally created by our modern beliefs and practices regarding death and dying.
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1, Death has become a “medical event” that must be treated in a medical facility.
2, We have become hopeful that high technology can “cure” us of death or at least delay it for a later or more appropriate time.
3. We don’t talk about death socially, so therefore, no one plans for it (ex: living wills, powers of attorney, etc).
4. We have lost deep connectedness and intimacy with others in the modern world. This translates into a scramble to keep the actively dying alive at all costs in efforts to gain time for creating closure and saying the things which need to be said.

These four issues have created this very real social crisis and they contribute to the strain that exists within the Medicare and Medicaid systems.  So, now I ask you: How do we solve the 90-80 dilemma? How do we find a way to allow those who desire it, to pass away in the peace and comfort of their own homes, surrounded by those who love them most; instead of dying alone, in an ICU, in the middle of the night, or in a nursing home.

Here are my 4 recommendations to solve the 90-80 dilemma:

1. Take a natural view of death. Understand that death is a natural event that can usually be comfortably and peacefully managed at home or in a pleasant hospice setting.
2. Understand that the most appropriate use of medical technology at the end of life is the aggressive treatment of pain or any uncomfortable symptoms, and not the selection of medical technology that artificially prolongs the dying process such as ventilators, ICU admissions, and CPR.
3. We must effectively move from “high tech” to “high touch” medicine at the end of life....
4. We must discover the power and gifts inherent in the end-of-life period. In the face of the sure knowledge of coming death, an emotional window of opportunity opens—love may be freely expressed, old grudges may fall away in insignificance, and closure may be obtained that remained elusive at other times of life. We must focus on creating quality of time at the end of life so that these gifts may be enjoyed.

In another post, she tells a story about decision-regret, "I should have taken him home".

She was shaking her side to side, staring into the distance down the hall. “He just wanted to die at home.”

“We all do,” I said. Quoting medical literature, I explained, “90 percent of us want to die in our own homes, but nearly 80 percent us die in hospitals or nursing homes. Whenever I talk to families in this room like you guys, the majority of them wish they had made different choices a few weeks or even months before. The problem is that we doctors don’t speak the truth. We don’t tell people where they really are in curve of life, so you don’t have the knowledge and resources to make the decisions to get your loved one home for the dying process. The medical system has failed you and it has failed Mr. Barnes tonight. I am keeping him alive with my machines, in a state and in a place that neither of you wanted; but you were never asked the right questions so that you could make the right plans. I am very sorry.”
Posted by Jill Fallon at 11:05 PM | Permalink

May 21, 2012

Losing sight of the fact that living a good life includes a good death

Let's not be afraid to talk about death writes the Archbishop of York.

In a society where people are living longer and medical science is enabling us to add more years to our span of life, we should not have to live in fear – we should celebrate and live life to the full. But in evading one of the most important discussions of our lives, we lose sight of the fact that a good death is also part of a good life.

Until this Monday morning you were probably not thinking about the meaning of life and the inevitability of death. Why would you? Even when there is time to sit back and consider the important things in life, we very rarely talk about death, even though sooner or later it catches up with all of us, regardless of our ethnic background or status. Death is the most democratic of all happenings.
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I speak to you now not as an archbishop, but as a grieving son who nursed and watched his mother die a long and painful death from throat cancer. The surgeon did a marvelous operation. She was with us for two more years.  But then, after a week in Trinity Hospice, with me at her bedside, my mother gently passed from this life, through death, to be with Christ. This time, though difficult, was actually very important to us. Our two children, aged 15 and 10, said: “Grandma is so peaceful. We haven’t lost her: she has simply departed from us. We will see her.” The look on their faces was awe-inspiring.

Hospice care is about providing a good listening friend for the journey. It is help for our fears and feelings of uncertainty. It’s also about addressing our wholeness; we need spiritual, social and medical care. For the army of volunteers, the doctors, the nurses and for all those who share the benefit of their expertise to help alleviate pain and suffering of patients and their families, I give thanks today.

We all have to die, but we can go some way towards dying with dignity if we first articulate our choices, such as the place where we want to die, the kind of spiritual support we may want, how we wish to be cared for and what our funeral plans may be. The Book of Common Prayer includes the exhortation to make a will – we should take this seriously. This may include whether to be an organ donor. Even choosing hymns for the funeral, songs or readings can help family members already trying to come to terms with their loss.
Posted by Jill Fallon at 11:28 AM | Permalink

May 6, 2012

The fear of suffering prior to death

"Death with Dignity" or physician-assisted suicide will be on the Massachusetts ballot this fall.  The Massachusetts Medical Society has come out against, saying that it corrupts medicine and the doctor-patient relationship.  I'm against it and one of the reasons is my  strong intuition that such a death robs the patient of what is most valuable in dying.  That is the opportunity for forgiveness and the mental, emotional and spiritual growth that comes with the dying process.  That said, all medical efforts should be directed to alleviating physical suffering.

Dr. Ty Meyer, a  palliative care physician, makes this argument in  Palliative Care vs. Physician Assisted Suicide

As the reality of approaching death sinks in, it brings with it many uncertainties and certainly fears. Many of my patients are naturally scared, but when investigated further this fear is of suffering prior to death and not death itself. This may lead to requests for hastening of death or physician assisted suicide. Dr. Ira Byock in his book The Best Care Possible notes that “any serious request from a patient for help in ending his or her life must be seen as a red flag that signals either that a patient is suffering or fears uncontrollable suffering in the future.” Requests for physician suicide can be seen as a plea to provide reassurance of relief of pain and suffering and reassurance that they as patients will not be abandoned as they are dying.

Too many patients have heard, “I’m sorry. There is nothing more that can be done,” as they approach the end of their lives. The reality may be that the medical options for cure or extending life are exhausted, but there remains much that is available medically to afford patients comfort and to improve the quality of their lives. By receiving high quality palliative care, either while undergoing curative/life-prolonging treatments with significant side effects or through a hospice program at the end of life, patients and their families are able to both deal with the current circumstances of their medical condition and begin to prepare for the future.

As a Catholic physician, I am often struck by casual comments indicating the justifiability of physician assisted suicide in situations of patient suffering and prolonged dying. It strikes me because I believe the final stage of life is vitally important to the dying person as well as to their family and is the natural consequence of living. The days and weeks leading to death can be very fruitful and in many instances are a healing time. In finding relief from physical suffering, patients are able to address the emotional, psychological, and at times spiritual areas of their lives that go unnoticed when physical symptoms are poorly managed. Imagine the difficulty of healing a broken relationship with a family member or God if every breath causes a stabbing pain in your chest or if your nausea is so bad that the thought of food induces vomiting.

Our goal in Hospice and Palliative Medicine is to provide the best experience for patients and families prior to death, to diminish suffering and allow a peaceful passage into the next world, but never to expedite death as a means of relieving suffering. By helping patients and families understand their illness and what to expect as it progresses and by managing physical suffering, they regain some sense of control and are able to focus on what is most important to them at the end of their lives.

In reassuring patients that they will not be abandoned at the end of life, their symptoms will be properly managed and their fears of suffering are addressed, hospices utilizing quality palliative medicine skills can help negate the desire by some to pursue physician assisted suicide. It helps turn a scary and unknown time in a person’s life into an opportunity for emotion and spiritual growth and allows for healing of the fractured relationships that are a part of life.
Posted by Jill Fallon at 9:54 PM | Permalink

May 3, 2012

'He’s going to get a drive-by, see mom two hours, and that’s how you end a 46-year marriage.'

You have to wonder how some health care workers can be so inhuman that it takes a desperate battle to reunite dying husband and wife who had not been apart for 46 years.

Husband, 71, dies next to wife of 46 years after desperate battle for the pair to be reunited in hospital for his final days

A 71-year-old man who had battled to die next to his wife of 46 years has passed away in their shared hospital room.
Matt Monschein died from pancreatic cancer at 1am on Tuesday - six days after he was reunited with his wife Pat, who was in hospital after having both legs amputated due to diabetes.

In March, doctors told Mr Monschein that nothing else could be done for him in the final stages of his cancer and added that he might be restricted in the time he spent with Pat due to her operation. The couple, from Lorain, were left devastated that they might not be able to spend their last moments together at Grace Fairview Hospital in Cleveland, Ohio - as it did not offer the hospice care that Mr Monschein needed. Yet Mrs Monschein could not be looked after at a hospice as she required round-the-clock care including dialysis.
One of the couple's two sons, Mike Monschein, told Fox 8: 'He’s going to get a drive-by, see mom two hours, and that’s how you end a 46-year marriage.'  Mike had appealed to local politicians, authorities and media outlets in the hope of bringing his parents back together.  After being helped by a local TV station to navigate the bureaucracy, the elderly couple were  allowed to spend Mr Monschein's final few days lying in beds side by side at the hospital.
 Dyingwish Monscheins
Both remained in the same room and according to cleveland.com, the hospital chaplain renewed their wedding vows. But on Tuesday, Mr Monschein lost his fight with pancreatic cancer. His son Mike told The Chronicle Telegram: 'Seeing my mom again has meant the world to my dad and has put smiles on both of their faces.  'Dad will be missed greatly. Mom will go on with the support of family and friends.'_
Posted by Jill Fallon at 1:58 PM | Permalink

March 23, 2012

Dying by Degrees

In  Dying by Degrees, Paula Span in The New Old Age reviews Dr. Ira Byock's new book, The Best Care Possible: A Physician's Quest to Transform Care Through the End of Life.

Ira Byock has been writing books about the way Americans die since 1998, when he published “Dying Well.” For most of that time, he has been appalled.

He still is. Dr. Byock, director of palliative medicine at the Dartmouth-Hitchcock Medical Center in Lebanon, N.H., pulls no punches in his new book, “The Best Care Possible: A Physician’s Quest to Transform Care Through the End of Life.”  The American way of dying, he points out, involves too much suffering for both patients and families, and routinized medical response with not enough individualized care. It means not enough listening, not enough support for families, way too much expense. “A national disgrace,” the author calls it in his introduction.
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What makes Dr. Byock’s book particularly valuable is the chance to eavesdrop on the doctors we’re often quick to blame. He tells what it’s like on the other end of the stethoscope.

Physicians who comment here sometimes argue that they’re more than willing to stop futile treatments, to refer patients with advanced disease to hospice care so that they can die gently at home. It’s often families, they report, who angrily demand that patients remain in intensive care units, that doctors try one more procedure and then another, as though yielding to death were a moral failing.
Posted by Jill Fallon at 8:51 PM | Permalink

February 14, 2012

When to throw in the towel

If you have really talked to any nurses or doctors, you know this is true.

Why MOST doctors like me would rather DIE than endure the pain of treatment we inflict on others for terminal diseases: Insider smashes medicine's big taboo.

 Doctor Mask Or

Should I discover tomorrow that I have advanced, life-threatening cancer, I won’t go rushing to the doctors for a heavily invasive course of medical treatment. No, I will shut up my London surgery, head to my home in Norfolk, stock up on gin and tonic and have a jolly good time until I meet my end.

Like most doctors, I understand that much of the care we offer patients who have serious, life-threatening illnesses is ultimately futile. Worse, it can involve many months of gruelling treatments that might possibly extend the length of one’s life, but do nothing for its quality.

But while we give that care to patients, the vast majority of doctors I know would not want this for themselves. Yet this fact has long been taboo in the medical world. The silence has been shattered by Ken Murray, professor of family medicine at the University of Southern California.

He hit the headlines worldwide last month after publishing an essay in the online magazine Zocalo Public Square, which argues that most practising doctors would not put themselves through ‘life-saving’ interventions that are big on promises, but small on success, and involve great pain and distress.
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The vast majority of doctors would know it was time to throw in the towel if they were told by a specialist that they had advanced, aggressive cancer, and that their treatment could, at best, improve their chances of surviving for five years by five per cent.

I can think of only one doctor among all my medical acquaintances who has had cancer and fought it with medicine all the way to their death.
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Read the whole article. Remember this when your time comes.  It's the quality, not the quantity of life that counts especially at the end of life.  Don't spend it undergoing chemotherapy that may at most just months to your life.  You're far better off in hospice or surrounded by those you love, enjoying what life you have to live.

Posted by Jill Fallon at 3:07 PM | Permalink

January 22, 2012

"The death of a spouse rewrites the rules of a family in ways I never could have imagined"

Watching Them Watching Me

You see, as hard as it has been for my three sons to lose their mother — she died rather suddenly two months shy of our 25th — I learned that anniversary night that it has also been hard for them to watch me lose the love of my life.

As alone as I feel, I am not actually alone. I have three sons who can pinpoint with laserlike precision the gaping hole in my heart. It is an odd feeling as a father to be so transparent, so naked, in front of the children you still provide for. But the death of a spouse rewrites the rules of a family in ways I never could have imagined. Some decisions in life, it turns out, are made for you, leaving you an unwitting accomplice and spectator at once.
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When I look back to the morning my wife died, it is now clear to me that my sons were well down this road even then — that they recognized our family’s changed order and its consequences. As we were driving home from the hospice in exhausted silence, my oldest son, in the passenger seat where his mom had always sat, turned to me and then to his brothers.

“It is just the four of us now,” he said. “We’ll need to be here for each other.
Posted by Jill Fallon at 10:33 AM | Permalink

December 9, 2011

Prenatal hospice

A Hospice in the Womb

Perinatal (meaning, around the time of birth) hospice brings the principles of hospice care to those families who, as a result of prenatal testing, receive the heartbreaking news that their baby has a terminal condition. For those wishing to continue their pregnancy, embracing whatever life their baby may have, it provides a “hospice in the womb”. This includes planning the baby’s birth and looking into the question of whether medical treatment might be warranted, as well as more traditional hospice and palliative care at home after birth if the baby lives beyond the first few minutes or hours.

Palliative care teams can involve obstetricians, perinatalogists, nurses, neonatologists, social workers, clergy, genetic counsellors, midwives and therapists. So far, there are around 90 programmes based more or less on this approach in the United States and a handful in other countries. Not all are in hospitals.
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The voices of more than 100 mothers and fathers interviewed for a recent book that Kuebelbeck co-authored with psychologist Deborah Davis, concur. In, A Gift of Time: Continuing Your Pregnancy When Your Baby’s Life Is Expected to Be Brief, they talk about their suffering, yes, but also about the consolation of becoming a real parent to their baby during the months or weeks of pregnancy, the joy of actually meeting their child and holding him or her, however briefly, and the peace of knowing that they did the right thing.
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And the choice she believes most mothers and fathers in this situation will want to make is the one that honours their baby’s life and their capacity to love their child. “They just want to be parents.”
Posted by Jill Fallon at 6:16 AM | Permalink

October 20, 2011

"A good life deserves a good death"

A Catholic priest on the counter-cultural role hospice can play,  Hospice in a Death-Denying Society.

"A good life deserves a good death"
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Death in times past was not necessarily less tragic to those who lost loved ones, but death was more prevalent, more public, more visible, and more a natural part of life than it is today. Our society is truly death-denying. Fitness centers, alternative medicines, an endless supply of diets are the order of the day. Consumers want the fountain of youth. You may object, of course, that death is all around us. The news and the movies are filled with death. But I suggest that this phenomenon itself is a further sign of a death-denying society. Death has become so commonplace as to be unreal. We can ignore death because it happens to others and not to us, or it is simply pretend. We can gloss over real fear with pretend fear. This is why people ride roller-coasters and go to horror shows.
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Both of my grandmothers died at home. .... How touching these deaths seem now when death in one’s own home is increasingly rare. What has changed over the span of the past half-century?

First, of course, the vastly increased mobility of society allows for fewer and fewer extended families. Second, people are living longer and often have multiple complex ailments in their final years. Elderly spouses are not strong enough to care for their dying mates, often needing extensive care themselves And the cost of end-of-life care is growing faster than the rate of medical care generally. The expense of round-the-clock nursing at home is one that only the wealthiest can now afford.
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One of my most unsettling hospital visits, even after some 20 years as a priest, was one of the first I made after becoming rector of St. Paul’s Episcopal Church in Freeport, Texas. Ed was the husband of one of my parishioners. He had suffered a massive heart attack and was in the coronary intensive care unit. Ed was splayed on a table with more tubes than I could count protruding from his almost naked body. When he turned to look at me, though he could not speak, his face shouted volumes of anger. He died several days later. Were his last days truly ‘better’ than those of my elderly family members because of the immense medical firepower brought to bear to keep his heart beating? Had Ed had become a problem to be solved; a chance to display all the exotic sorcery of modern science? Had he, in some sense, been diminished as a human being at the end of his life?
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Life unquestionably needs positive affirmation. But in a death-denying society, someone must also be speaking out. Someone must declare the truth that no one can avoid death. We will all die, and it is harmful to all of us to try to hide death as if it is a loathsome disease or an unnatural act. If hospice will not make this statement, then who will?
Posted by Jill Fallon at 9:46 PM | Permalink

September 20, 2011

“It is an honor for me to be allowed in these rooms’’

Helping patients in their final moments

 Hospice Worker

As a hospice worker, Joe Ackerman is in the room when patients take their last breath. These moments, he said, are often filled with dignity and grace.

“It is an honor for me to be allowed in these rooms,’’ said Ackerman, 40, an administrator at the Merrimack Valley Hospice House in Haverhill. “You see the best in people at that time, and I leave with a sense of love and spirit that reaffirms life.’’

Patients come to a hospice when a cure is no longer possible for their illness, whether HIV, congestive heart failure, or neurological diseases. For cancer patients, hospice can be a peaceful end to depleting rounds of chemotherapy, and the pain and nausea that follows.
Posted by Jill Fallon at 1:28 PM | Permalink

May 3, 2011

What should medicine do when it can't save your life

Atul Gawande on Letting Go or Why hospice care for dying patients.


People have concerns besides simply prolonging their lives. Surveys of patients with terminal illness find that their top priorities include, in addition to avoiding suffering, being with family, having the touch of others, being mentally aware, and not becoming a burden to others. Our system of technological medical care has utterly failed to meet these needs, and the cost of this failure is measured in far more than dollars. The hard question we face, then, is not how we can afford this system’s expense. It is how we can build a health-care system that will actually help dying patients achieve what’s most important to them at the end of their lives.
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“Is she dying?” one of the sisters asked me. I didn’t know how to answer the question. I wasn’t even sure what the word “dying” meant anymore. In the past few decades, medical science has rendered obsolete centuries of experience, tradition, and language about our mortality, and created a new difficulty for mankind: how to die.
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Hospice has tried to offer a new ideal for how we die. Although not everyone has embraced its rituals, those who have are helping to negotiate an ars moriendi for our age. But doing so represents a struggle—not only against suffering but also against the seemingly unstoppable momentum of medical treatment.
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This is a modern tragedy, replayed millions of times over. When there is no way of knowing exactly how long our skeins will run—and when we imagine ourselves to have much more time than we do—our every impulse is to fight, to die with chemo in our veins or a tube in our throats or fresh sutures in our flesh. The fact that we may be shortening or worsening the time we have left hardly seems to register.

We imagine that we can wait until the doctors tell us that there is nothing more they can do. But rarely is there nothing more that doctors can do. They can give toxic drugs of unknown efficacy, operate to try to remove part of the tumor, put in a feeding tube if a person can’t eat: there’s always something. We want these choices. We don’t want anyone—certainly not bureaucrats or the marketplace—to limit them. But that doesn’t mean we are eager to make the choices ourselves. Instead, most often, we make no choice at all. We fall back on the default, and the default is: Do Something. Is there any way out of this?
Posted by Jill Fallon at 4:25 PM | Permalink

August 27, 2010

Mother Teresa on dying

August 26, 2010, was the centennial of the birth of young girl in Albania who grew up to take vows as a missionary nun, taking the name of Teresa, in the Irish order the Sisters of Loretto . She taught school for some 17 years in India before she received “the call within the call” to leave the convent and to help the poor while living among them.

With permission from the Vatican to pursue her call, she began a school but soon turned to care for people dying on the streets of Calcutta. The Missionaries of Charity was formally recognized by the Vatican in 1950 with the mission to care for, "the hungry, the naked, the homeless, the crippled, the blind, the lepers, all those people who feel unwanted, unloved, uncared for throughout society, people that have become a burden to the society and are shunned by everyone."

Mother-Teresa-Stamp.jpg

From the Wikipedia entry

In 1952 Mother Teresa opened the first Home for the Dying in space made available by the city of Calcutta. With the help of Indian officials she converted an abandoned Hindu temple into the Kalighat Home for the Dying, a free hospice for the poor. She renamed it Kalighat, the Home of the Pure Heart. Those brought to the home received medical attention and were afforded the opportunity to die with dignity, according to the rituals of their faith; Muslims were read the Quran, Hindus received water from the Ganges, and Catholics received the Last Rites.

"A beautiful death," she said, "is for people who lived like animals to die like angels—loved and wanted."

Recently, an Italian journalist, Renzo Allegri published a new book of his memories of Mother Teresa. Here is an excerpt that touches on what she thought and felt about dying. Love until it hurts.

One day I asked her spontaneously: “Are you afraid of dying?”.  I had been in Rome for some days. I met her a couple of times and had gone to greet her because I was returning to Milan. She looked at me almost as wishing to understand the reason for my question. I felt I had done wrong in speaking of death and tried to correct my mistake....She remained again for some seconds in silence; then, going back to the question that I asked her, she continued:
“I would be as happy as you if I could say that I will die this evening. Dying I too would go home. I would go to paradise. I would go to meet Jesus. I have consecrated my life to Jesus. Becoming a sister, I became the spouse of Jesus. See, I have a ring on my finger like married women. And I am married to Jesus. All that I do here, on this earth, I do it out of love for him. Therefore, by dying I return home to my spouse. Moreover, up there, in paradise, I will also find all my loved ones. Thousands of persons have died in my arms. It is now more than forty years that I have dedicated my life to the sick and the dying. I and my sisters have picked up from the streets, above all in India, thousands and thousands of persons at the end of life. We have taken them to our houses and helped them to die peacefully. Many of those persons expired in my arms, while I smiled at them and patted their trembling faces. Well, when I die, I am going to meet all these persons. It is there that they await me. We loved one another well in those difficult moments. We continued to love one another in memory. Who knows what celebration they will make for me when they see me. How can I be afraid of death? I desire it; I await it because it allows me finally to return home.”
Posted by Jill Fallon at 2:55 PM | Permalink

August 10, 2010

Quality of Death Index

The Economist calls it Grim Reapings, an attempt to rank end-of-life care in different countries.

Good-Death-Guide, Economist

Britain tops the table. For all the health-care system’s faults, British doctors tend to be honest about prognoses. The mortally ill get plentiful pain killers. A well-established hospice movement cares for people near death, although only 4% of deaths occur in them.
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The report combines hard statistics such as life expectancy and health-care spending as a share of GDP with weighted assessments of other indicators. One is the public awareness of the availability of hospices. Another is whether a country has a formal policy or legislation on treating the terminally ill (only seven of the 40 do).
Posted by Jill Fallon at 9:56 PM | Permalink

July 27, 2010

What should medicine do when it can't save your life?

Atul Gawande on Letting Go.  A must read especially for those who have a loved one with a terminal illness.

Almost all these patients had known, for some time, that they had a terminal condition. Yet they—along with their families and doctors—were unprepared for the final stage. “We are having more conversation now about what patients want for the end of their life, by far, than they have had in all their lives to this point,” my friend said. “The problem is that’s way too late.” In 2008, the national Coping with Cancer project published a study showing that terminally ill cancer patients who were put on a mechanical ventilator, given electrical defibrillation or chest compressions, or admitted, near death, to intensive care had a substantially worse quality of life in their last week than those who received no such interventions. And, six months after their death, their caregivers were three times as likely to suffer major depression. Spending one’s final days in an I.C.U. because of terminal illness is for most people a kind of failure. You lie on a ventilator, your every organ shutting down, your mind teetering on delirium and permanently beyond realizing that you will never leave this borrowed, fluorescent place. The end comes with no chance for you to have said goodbye or “It’s O.K.” or “I’m sorry” or “I love you.”

The difference between hospice and standard medical care.

The difference between standard medical care and hospice is not the difference between treating and doing nothing, she explained. The difference was in your priorities. In ordinary medicine, the goal is to extend life. We’ll sacrifice the quality of your existence now—by performing surgery, providing chemotherapy, putting you in intensive care—for the chance of gaining time later. Hospice deploys nurses, doctors, and social workers to help people with a fatal illness have the fullest possible lives right now. That means focussing on objectives like freedom from pain and discomfort, or maintaining mental awareness for as long as possible, or getting out with family once in a while. Hospice and palliative-care specialists aren’t much concerned about whether that makes people’s lives longer or shorter.

Like many people, I had believed that hospice care hastens death, because patients forgo hospital treatments and are allowed high-dose narcotics to combat pain. But studies suggest otherwise. In one, researchers followed 4,493 Medicare patients with either terminal cancer or congestive heart failure. They found no difference in survival time between hospice and non-hospice patients with breast cancer, prostate cancer, and colon cancer. Curiously, hospice care seemed to extend survival for some patients; those with pancreatic cancer gained an average of three weeks, those with lung cancer gained six weeks, and those with congestive heart failure gained three months. The lesson seems almost Zen: you live longer only when you stop trying to live longer.
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This is not just a Zen, Christians hold the same.  Life is not and can never be a possession.  Attempting to grasp life and hold on it in fact diminishes your life.  "For whosoever will save his life shall lose it; but whosoever shall lose his life for my sake and the gospel’s, the same shall save it.” (Mark 8:34-5).

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The simple view is that medicine exists to fight death and disease, and that is, of course, its most basic task. Death is the enemy. But the enemy has superior forces. Eventually, it wins. And, in a war that you cannot win, you don’t want a general who fights to the point of total annihilation. You don’t want Custer. You want Robert E. Lee, someone who knew how to fight for territory when he could and how to surrender when he couldn’t, someone who understood that the damage is greatest if all you do is fight to the bitter end.
Posted by Jill Fallon at 5:33 PM | Permalink

July 21, 2010

Mostly waiting

Still in the World

I sat with the syringe in hand, watching her labored breathing. My mother was dying, and dying in pain. And I could make it stop....A wave of revulsion washed over me as I realized I had been tempted because I had forgotten a simple truth: The dying are still the living, and their inherent worth is not diminished simply because their remaining moments on earth are few.
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It was only after her death that I could fully appreciate the casual lesson she had taught me. She had once been a hospice nurse and had cared for dozens of people as they began to die, staying with them to the end. I once asked her what the job entailed. “Mostly waiting,” she said. “You just stay with them and make them comfortable. Let them know they are not alone.”
Posted by Jill Fallon at 9:00 PM | Permalink

April 30, 2010

"Dehydrating a patient to death is known as The Third Way"

Quiet euthanasia by Matt C. Abbott

"Hundreds of thousands of patients are killed in the world each year in this manner, and no police or district attorney will act to investigate or prosecute."  These are the alarming words of Ron Panzer, founder and executive director of Hospice Patients Alliance, an organization dedicated to preserving the original mission of hospice care and exposing the pervasive problem of "quiet euthanasia" in the hospice industry.
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"Dehydrating a patient to death is known as The Third Way, says Panzer. "It's a way of side-stepping the laws against medical killing but assuring just as sure a result: death. It's extremely common."
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Regarding sedation, Panzer warns that "a natural death includes total sedation only if the patient is 'terminally agitated' uncontrollably, dangerously psychotic or delusional, or in severe pain where strong pain medications alone do not adequately manage that pain. To sedate without real agitation is a choice to kill. To dehydrate before the patient cannot take fluids is a choice to kill."

Panzer says that death through The Third Way is "the most censored story in the United States and perhaps the entire world."
Posted by Jill Fallon at 2:32 PM | Permalink

May 26, 2009

Procrastinating until death

Suppose you went to the doctor and after a few tests, you learn that you have lung cancer that has metastasized. You go online and learn that the vast majority of people with your diagnosis do not survive two years.

Would you begin thinking of an aggressive fight to forestall death or would you begin to think of hospice? And who would you talk to about it?

Yesterday, a Harvard Medical School study found that terminally ill patients delay talk of hospice and many have an unrealistic outlook on the future.

Only about half of the 1,517 patients with metastasized lung cancer who were surveyed had discussed hospice care with their physician or healthcare provider within four to seven months of their diagnosis. The vast majority of such patients do not survive two years.

Hospice care - which can be delivered in a home, hospital, or other facility - focuses on managing a patient's pain and emotional and spiritual needs, rather than trying to cure the terminal illness.

For some ethnicities and races, the likelihood of a discussion about hospice was even lower. About 49 percent of African-Americans and 43 percent of Hispanics had a conversation with their physicians, the study found, compared with 53 percent of whites and 57 percent of Asians.

It may be that some do not understand their prognosis.

Huskamp theorizes that patients who said they had not discussed or considered hospice may not have fully understood their prognosis, or may be choosing to believe a rosier outcome. She also said that, in general, physicians are not well-trained to handle such delicate conversations....."You have a lot of doctors out there who weren't trained in these conversations about end of life or breaking any kind of bad news, whether it's a prognosis or difficult treatment," she said.

How many tests and treatments are you willing to undergo when you're 80 or so?

Billions of dollars are spent each year in the United States on intensive treatments for older patients in the last six months of their lives, according to the 2008 Dartmouth Atlas of Health Care.....Some studies have recently concluded that hospice care can substantially lower costs for many terminal illnesses, and may often be more in line with what patients want.

How do you want to spend your last months?  Undergoing chemotherapy or just being outside in the sun?

"As baby boomers get older and see how their parents are dying, they don't want that type of death," said Rigney Cunningham, executive director of the Hospice & Palliative Care Federation of Massachusetts, and a member of the state panel.  "I don't think anymore that death is a taboo conversation with these consumers," she said. "I think people are just struggling with how to start the conversation."
Posted by Jill Fallon at 10:58 AM | Permalink

April 4, 2009

The terrible costs of not discussing end-of-life care

If doctors and families don't talk about end-of-life care, the dying patient will endure more misery, physical distress and suffering as costs
mounts up.

At the end of life, denial comes at a price

A team of investigators, lead by researchers at the Dana-Farber Cancer Institute in Boston, interviewed 603 patients with advanced cancer. They asked the patients, who had about six months left to live, whether their doctors had discussed their wishes for end-of-life care. The majority — 69 percent — said those conversations had not taken place. And in their last weeks of life, those patients who had talked with their doctors wound up with medical bills that were on average 36 percent lower — $1,876 compared to $2,917 — than those of patients who did not have end-of-life conversations with their doctors.
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Why such a big difference? Dr. Holly Prigerson, a professor of psychiatry at Harvard Medical School and an author of the study, explained that the patients who never talked about their end-of-life wishes were more likely to be resuscitated, intubated or put in intensive care — or all of the above. Patients who had had those conversations generally opted for comfort, or palliative, care at home or in a hospice at much lower cost.
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Why should doctors be so reluctant to talk about dying when patients are terminally ill? Dr. Susan Dale Block, chair of the department of psychosocial oncology and palliative care at Brigham and Women’s Hospital in Boston, noted that oncologists don’t want to appear to be giving up on patients by discussing plans for dying. At the same time, family members and loved ones worry that such conversations might upset an already vulnerable patient. And patients themselves often feel their role is to be heroic and to soldier on, against the odds, with yet another treatment or intervention.
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As this blog has noted, Compassion & Choices offers free consultations to families and patients through its End-of-Life Consultation Program (800-247-7421). The program’s counselors help patients make decisions about continuing treatment and provide advice on asking health care providers some of the tough questions. The counselors also offer tips on how to speak to providers if the patient’s needs and wishes are not being met.
Posted by Jill Fallon at 10:54 AM | Permalink

March 20, 2009

Revenge from beyond the grave

Mother leaves  $40k to hospice and nothing to daughters who tried to evict her from her home.

They say revenge is a dish best served cold.  But few would go as far as Megan Swanston, who waited until after her death to get back at her three daughters for trying to throw her out of her home.

Instead of sharing her £20,000 estate between them, it emerged yesterday that she changed her will to give all the money to the hospice where she spent her last months.
Posted by Jill Fallon at 2:59 PM | Permalink

October 31, 2008

Making Dying Easier

Hospice Chaplains Take Up Bedside Counseling

The encounter with a chaplain can be profound and spiritual, and sometimes religious in a traditional way. More and more, though, ministering to the terminally ill in hospice care is likely to be nonsectarian, or even secular.

In the quarter-century since Medicare and some private insurers began picking up the bill for hospice care, it has become a common recourse for the terminally ill. With doctors, nurses, social workers and ample supplies of pain medication dispatched to their homes or nursing facilities in the final weeks and months, about 1.3 million Americans died last year in hospice care.

Spiritual counseling has always been an optional part of the service. But recently, the proportion of patients choosing to receive it, and the number of new chaplains entering the field to meet the need, have risen sharply.
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In the hospice idiom, the job of the chaplain is to make dying easier. In a way that perhaps only Americans would understand, some chaplains refer to what they do as fostering a more “successful” experience — by whatever definition of success can be negotiated in the final hours between a dying person and a compassionate stranger.

Health care and religion experts cite several reasons for the new pastoral model: a growing consensus in the medical world that spiritual care comforts terminal patients; the shortage of clergy, especially priests; a decline in traditional worship; and the apparently unchanged need most people have near the end of life to make sense of existence.
Posted by Jill Fallon at 12:04 PM | Permalink

October 27, 2008

The Harpist in the Hospice

As life ebbs, healing music flows.

As four generations of the family say their goodbyes, a woman they have just met sits in a corner, playing her harp. Over the past three years, Jennifer Hollis has been accompanist to hundreds of these intimate gatherings at Lahey Clinic. Hollis, 35, is trained as a music thanatologist and plays her harp and sings to dying patients and their loved ones.

Playing music for the dying is an ancient ritual that Hollis - the only practicing music thanatologist in a Massachusetts hospital, according to Lahey officials - and others are helping to revive. Music thanatologists point to studies suggesting that music can ease pain and breathing difficulties, as well as soothe agitated patients and help them sleep.

"Many times families will not expect to have the emotions that they have," said Collins, who encourages patients' relatives to stay in the room when Hollis plays. "They just start to weep. Or people will touch each other. Normally, in the hospital, with the bars up, it's not that easy to make that connection. There's something so healing about it."
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"I do see a lot of suffering," Hollis said. "I see people who have to say goodbye to each other, who are coming to terms with what it means to leave this world, or this life that they've known. But what I also get to see is people being incredibly beautiful and loving and tender with each other, patients saying wonderful things to their families, families saying wonderful things to them. For me, it's a real education in what it means to be human."
Posted by Jill Fallon at 2:16 AM | Permalink

October 2, 2008

A Sacred Level of Attention is Necessary

Dr. Diane Meier, 55, won a genius award from the  MacArthur Foundation for her work as a geriatrician improving treatment for critically-ill patients.

Her goal is to make palliative care "part of the genome of American medicine" writes Jane Gross in the New Old Age blog at the New York Times  A Time When Listening is 'Sacred"

Dr. Meier, 56, director of the Center to Advance Palliative Care and professor of geriatrics and medical ethics at Mount Sinai School of Medicine in New York, parted ways a decade ago with an outspoken group of physicians nationwide who sought the legalization of assisted suicide.
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Her argument then — and even more vociferously now — is that the American health care system reimburses doctors for doing procedures, not spending hours plumbing the souls of their patients. Thus no physician has time for the discussion, reflection and explanation necessary to conclude, knowledgeably and honorably, that helping a patient die is a reasonable and ethical choice
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Her research has shown that virtually nobody actually wants to die if given access to adequate pain control, emotional and spiritual support for themselves and their family, and what Dr. Meier calls the “sacred level” of attention necessary to “validate their suffering.” As with hospice care, but without the requirement of a terminal diagnosis, palliative care physicians spend most of their time talking to patients and caregivers.
Posted by Jill Fallon at 6:34 PM | Permalink

June 10, 2008

More young volunteer to be with the dying

Don Aucoin reports For hospices, an infusion of youth

Her first assignment was with an elderly man with Alzheimer's disease. "I began to realize how much difference you can make in the patient's life, and in the family's life," Peden says. "At the moment of death, I was able to comfort him. I held his hand and told him, 'I'm here with you.

At  Charlestown-based Beacon Hospice, the largest hospice organization in New England, the number of volunteers in their teens or 20s has increased by nearly 80 percent in the past year...Nationally, "The age and demographics for hospice volunteers is widening as hospices serve more and more families."
Posted by Jill Fallon at 7:45 AM | Permalink

January 2, 2008

The Hospice Dog

When Jon Katz and his fie-year-old Border collie Izzy became hospice volunteers, he didn't expect that he would be such a natural. My dog's amazing gift with hospice patients

He approaches people in pain, people in comas, with dementia and paralysis, disfigured and frightened, always softly, carefully, and lovingly. He threads his way around IVs and oxygen tanks. I've never had a dog that could do this kind of work, nor could I begin to imagine how to train a dog to do it.
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Izzy was watching carefully. When she put her right hand on her knee, he made his move, slithering toward her and placing his nose beneath her hand.

She froze, as if shocked, and her eyes widened. Her mouth opened, but no words came out. I saw her hand close over Izzy's slender nose as he sat stock-still. A slight smile came over her worried face, and she calmed, visibly. "Oh," she said, softly, with pleasure. "Oh. It's a dog."Izzy didn't move for at least 10 minutes. Neither did Etta. She moaned still, but more softly.

One of the aides came in on her rounds and looked shocked. "My God," she said, "that's the first time I've ever seen her smile."
Posted by Jill Fallon at 8:12 AM | Permalink

November 27, 2007

Living Too Long

In Hospice Care, Longer Lives Mean Money Lost.

Since 1983, Medicare has paid for hospice care for people in their last six months of life, about $135 a day. It worked quite well as long as most hospice patients were cancer patients who died pretty quickly once curative treatment stopped and only palliative care continued.

But now more patients are using hospice and those patients are living longer in hospice, often well past the 6 month limit.  Hospice payment has become one of the fastest growing components of Medicare with spending nearly tripled since 2000.

The federal government wants its money back,

Hundreds of hospice providers across the country are facing the catastrophic financial consequence of what would otherwise seem a positive development: their patients are living longer than expected.
Posted by Jill Fallon at 9:41 AM | Permalink

November 24, 2007

Remembrance Photography

Can there be anything sadder than parents who have anticipated heir baby's birth for months, to have the baby born so sick that it soon dies? When such sorrow replaces joy, who knows what it takes to heal?  Yes, parents have to go on, but they also have to remember.

Now I Lay Me Down to Sleep is a foundation and a network of professional photographers who will come to a hospital or hospice and take professional portraits of the tiny baby so their parents and family will remember them.  Once the baby dies and is unhooked from tubes and machines, it may be the first and only time the parents have to hold the little one that they loved so much.

               Remembrance Photography

Thanks so much to Hootsbuddy who alerted me of this site and wrote a wonderful post, Remarkable Photo Ministry.
That's just what these photographers do, minister like angels, at the saddest times parents can experience.

Remembrance photography began in the Victorian era when a photo of a deceased loved one was treasured, especially if no other photographs existed.  Said one woman,"What a comfort it is to possess the image of those who are removed from our sight. We may raise an image of them in our minds but that has not the tangibility of one we can see with our bodily eyes.”

Posted by Jill Fallon at 1:32 PM | Permalink | TrackBack

June 26, 2007

Eulogy for My Mother

I wrote at the beginning of June on Business of Life that My Mother was Dying and now I can report that it was A Beautiful Death.  The funeral  was lovely, all the women from the oldest to the youngest dressed in white.    White might seem strange for a funeral but when my father died, my mother asked all of us to wear white to represent the promise of the Resurrection and so we did it for her. (She hated black anyway and never wore it again after her mother's funeral in the 60s.)

     White At Funeral

Her grandchildren were pall bearers.  We sang the hymns she wanted, Tell Me Why, a lullaby she sang to us when we were little, Gentle Woman, and A Closer Walk with Thee.

After her Mass of Christian Burial,  we gathered outside on a beautiful June day in front of the  church in a little garden where Army Air Force Nurse Ruth Fallon received final military honors and the family was presented with an American flag "on behalf of grateful nation."  A bagpiper played Amazing Grace and Taps.

Ruth's Funeral

This is the eulogy I gave for my mother, Ruth E. Fallon,

Someone once wrote that  “The fundamental pattern for any community is a congregation at a funeral”  The pattern of all of us gathered here this morning is the pattern of the community of Ruth Fallon, everyone of us connected to her  in some way.    It’s a beautiful pattern.    Thank you all for coming today.  It means a lot to her family.

Cormac McCarthy said “The closest bonds we will ever know are the bonds of grief.  The deepest community is one of sorrow.”  We are sad, yes indeed.  But even in this time of sorrow, we sons and daughters of Ruth Fallon are grateful.  And gratitude is a higher tribute than grief.  We’re so proud of her being our mother. 

We ask ourselves -  How did we get so lucky?

Well, there were the roots in the heartland, the Mid West,  1921.  The Great War was over, the country was booming, and a sweet and nutty candy bar appeared, the Baby Ruth, the same year Baby Ruth Mundell was born in Detroit, Michigan to John Mundell, a Presbyterian minister and Ellen Paterson, a nurse.  Ruth grew up with her younger brother Jackie and her younger sister Marilyn in the small town of Blissfield, Michigan, where her father had his first church.  She didn’t much like all the church activities she had to attend on her ‘best behavior” or being called "P.K", the preacher’s kid.    Heaven then was summers on “The Farm” in Ontario with their Paterson cousins.  When she was nine or ten, the family moved back to Royal Oak, a leafy Detroit suburb with a zoo and an exemplary farmer’s market stocked with the best eggs, Canadian cheddar and spy apples, the best ones, she told us, for apple pies along with  “An apple pie without cheese is like a kiss without a squeeze.”

Her father discouraged from becoming a doctor, one of the few regrets of her life, so she went to Deaconess School of Nursing in Detroit.  Then came Pearl Harbor and Ruth heard the call to service.  On graduation Ruth applied for a commission in the Army Air Force Nurses Corps and soon she was a Second Lieutenant assigned to Buckley Air Force Base in Denver, Colorado.  A recovering patient, Flight Officer William James Fallon from Fitchburg, Mass caught her eye as he sat alone reading Time magazine at a dance.  Three months later they were married..  A first baby – that’s me – was born just as the war ended.  Ruth and Bill grew up fast and headed East where, with the GI Bill, they could begin college.  They ended up in Vermont at St. Michael’s, one of the few colleges that offered housing for married veterans with children.  Soon both were attending classes and Ruth took a fling at acting in a summer stock production at the Playhouse.  Soon after Kevin was born, Dad graduated and we moved to Arlington so he could start law school.  Then Debby came, soon Billy, Colleen, Robby and Julie Ann. 

So what do you do as the mother of seven, after you’ve made the school lunches, gone food shopping, sewed the clothes, broke up the fights, wiped away the tears, fixed the dinner, gave the baths and oversaw our nightly prayers.  If you were Ruth Fallon, you’d hightail it down to work at the Operating Room at Mt Auburn Hospital where you would finally relax among adults with ‘no kids’ around.

We thought she was beautiful with the most delicious smell of White Linen, glamorous when she dressed up, her jewels on for some special occasion with Dad.  Ruth was there for our First Communions, confirmations, high school and college graduations, our boyfriends and girlfriends and our marriages.  She was there for her friends.  We all remember her going off –in the early days in nurse’s cap and cape - to attend a neighbor in the hospital or a sick friend.. She knew what to do, what had to be done and she did it.  And we watched her.   

She  wanted us to be good.  She wanted us to be happy. And she wanted us to have a good education.  She said once that her proudest achievement along with our Dad was sending all seven children to college and graduate school.  When I left for college, Ruth went back to get her degree from Boston College in psychology.  Maybe that helped because I can only guess how she made it through the sixties and seventies with seven teen-agers.  Of course, there were some things she never knew about.  But not as much as we think...  As we grew beards and donned hippy clothes, she roamed Filene’s Basement to find Brooks Brothers suits and Ferragamo shoes.  We called her the world’s oldest Preppy. 

She traveled to Europe, visiting me in Paris and Geneva, Kevin in Pisa, Colly and Robby in Italy, and Billy in Thailand and Switzerland.  She loved Italy the best, especially since she could smoke in any bar or restaurant.  That and Italian leather.  She would buy scores of gloves for presents and a red leather jacket for herself that she wore as she tooled around in her blue sports car with Vinny, her Jack Russell terrier at her side.

She was completely herself all of her life, doing things the way she wanted.  Unless you knew Ruth, you wouldn’t know that under that quiet, mild exterior, she was a corker, a pistol, feisty, funny and independent as all get out.  Always original, a real character that Ruth. 

Most of all she was an original giver with a generosity that was striking.  Her brownies, oatmeal cookies and peanut brittle are renowned throughout the community of Ruth.  No one left Ruth’s house without passing the bags she set aside for the prison ministry, the food pantry and the Salvation Army and without something she had given them  - cookies, coupons, lipsticks, Christopher calendars, wallets, stickers, books, beef stew or a box of chocolates.  So much so that it became a family joke. “What ja get” 

But we watched her and knew that those little gifts were proofs of her love.  Self-giving -  Ruth’s concern for others  - was the predominant pattern of her life. Such self-giving would not have been possible had she not her faith, solid as a rock.  She converted to Catholicism as a young woman and in her faith found strength, solace and peace.  She went to daily Mass at the Grey Nuns, Sundays here at Sacred Heart, and many times in Rome and Assisi with fellow parishioners.

We’ll celebrate her life later  at a party at Ruth’s house to which you are all invited.  Right now, we give thanks.  Thanks to God for giving us Ruth who gave us life and lit up our lives.  She set the bar high, Ruth did. 

Never was it more evident than in the manner of her dying.  Only two months ago we learned her cancer had come back.  She choose not to have chemotherapy.  We sons and daughters of Ruth knew what to do.  After all, we had watched her all our lives.  We came back home to care for her and be with her and each other in our childhood home.  With the help of hospice who kept her pain-free and the skilled care of her daughter Colleen, a nurse, Ruth was completely herself to the end, much to our delight.  She enjoyed us, her grandchildren, especially the little ones– she always a weakness for babies - and many visitors in the past few weeks downstairs in her own home.

She was completely unafraid, often radiant with happiness, beaming at all the people she loved.  With her strong heart, she used every last bit of her substance so we could be together and with her just a bit longer.  On her last day, we gathered round her bed to toast her with her favorite wine  - Santa Margarita Pinot Grigio -  and put a tiny drop on her lips.

After she passed through the doors of death, her mouth relaxed into a smile that reached the corners of her eyes. 

Thank you God for that grace and privilege of being with Ruth in her last days.

She was a great being.  She is a great soul alive and well in the kingdom and the glory of our Lord, Jesus Christ.  We can be sure that all is well.  All will be well.

For we sons and daughters of Ruth, she will always be our light at the top of the stairs that now reach all the way to heaven.

May the memory of Ruth always be a blessing to those here gathered in body or in spirit.

And perpetual Light shine upon her.

Posted by Jill Fallon at 1:45 PM | Permalink