Courtesy of TheNewYorkTimes.com | By Caroline M. Grant | Image by Yvetta Fedorova | Originally Published 10.12.2018 | Posted 11.20.2018
Go funeral dress shopping. When the saleswoman asks about the event, say: “Dressier than office, but not as fun as cocktail.”.
Before: Text your friends to tell them that your mother has entered hospice. Tell them that it’s just to get the equipment she needs (a hospital bed, a better wheelchair) and not a sign of her impending death. Pretend you believe it.
Brace yourself for the SWAT team of hospice services and providers that descends on you: the social worker, the nurse, the chaplain, the volunteer bearing a soft blanket, a stuffed bear and lavender-scented hand lotion. Give the bear away.
Answer every phone call from “Unknown Number” because usually it is some kindly person from hospice. Apologize to the Unknown Number who is not hospice when you tell her no, you can’t subscribe to the symphony because your mother is dying. Start to tell her that your mother used to subscribe to the symphony and you would like to someday, when she is … Trail off, hang up and feel guilty about the little bomb you dropped into her day.
A month before your mother’s death, read the draft of her obituary that your father has written, and start to offer edits like it’s any other piece of writing. Don’t cry until you come to the names of your children and nieces. Continue reading “A Handbook for Grieving”→
Courtesy of TheNewYorkTimes.com | By Daniela J. Lamas, M.D. | Photo by Ryan McVay | Originally Published 10.17.2018 | Posted 11.17.2018
Let me start with an apology.
When I saw that your 90-year-old father was in our emergency department, after being resuscitated while on home hospice, I assumed that I understood what had happened. As a critical care doctor, I have cared for patients whose families have changed their minds at the last minute, grasping on to impossible hopes rather than face the reality of death.
On the phone with the E.D. physician, I sighed. “Family?” I asked.
“Must have reversed the D.N.R.” — the do-not-resuscitate order that is standard for a patient on hospice care. “They’re on the way,” she said.
I told her I’d head down. I was fairly sure that nothing was going to change. But before we took this patient to the intensive care unit, tethered to machines he had never wanted, I wanted to begin to talk with you.
There your father was. He was so pale. A ventilator breathed for him. His body, wasted by cancer, flopped like a rag doll. I touched his fingers and they were cool, vessels clamped down by the medicines keeping his blood pressure from plummeting. I imagined caring for him in the I.C.U., trying not to hurt him even more. Continue reading “When the Hospice Care System Fails”→
Courtesy of TheNewYorkTimes.com | By Monona Yin | Photo by Loris Guzzetta | Orignally Published 10.23.2018 | Posted 11.11.2018
We had started down the path of honoring our mother’s wish to have a good death until a hospice nurse figured out that she wasn’t really dying.
Three years ago, my family and I had the experience of going through a full “dress rehearsal” for my mother’s demise. At 83, she had become alarmingly weak from stage IV lymphoma and atrial fibrillation, and asked me and my brother to come home to Delaware for her next oncologist visit.
Mom had already undergone chemotherapy and cardioversion, so we knew there were few treatment options left. Still, we were utterly unprepared when the doctor said, “She probably has less than six months,” and recommended that she begin hospice care.
Widowed at just 37 with two small children, Mom has trained herself to face challenges without flinching. She is that rare Chinese elder who isn’t superstitious about mentioning or planning for her own death.
True to form, when we got home from the oncologist’s office, Mom sat us both down at the kitchen table to discuss her end-of-life wishes. She had witnessed two horrible lingering deaths up close — her mother’s and a longtime friend’s. What she feared most was pointless suffering and the loss of control over her own life. She wanted us to understand that, if she had little hope of recovery, she’d rather go quickly than fall apart slowly and painfully.
Courtesy of CNN.com | By JoNel Aleccia, Kaiser Health News | Originally Posted 09.12.2018 | Posted 10.15.2018
In the end, it wasn’t easy for Aaron McQ to decide when to die.
The 50-year-old Seattle man — a former world traveler, triathlete and cyclist — learned he had leukemia five years ago, followed by an even grimmer diagnosis in 2016: a rare form of amyotrophic lateral sclerosis, or ALS.
An interior and urban designer who legally changed his given name, McQ had been in pain and physical decline for years. Then the disease threatened to shut down his ability to swallow and breathe.
“It’s like waking up every morning in quicksand,” McQ said. “It’s terrifying.”
Last fall, McQ decided to use Washington state’s 2009 Death With Dignity law to end his suffering. The practice, approved in seven states and the District of Columbia, allows people with a projected six months or less to live to obtain lethal drugs to end their lives.
Although the option was legal, actually carrying it out was difficult for McQ, who agreed to discuss his deliberations with Kaiser Health News. He said he hoped to shed light on an often secretive and misunderstood practice.
“How does anyone get their head around dying?” he said, sitting in a wheelchair in his Seattle apartment in late January.
Aaron McQ battled leukemia and a rare form of amyotrophic lateral sclerosis, or ALS, for five years.
More than 3,000 people in the U.S. have chosen such deaths since Oregon’s law was enacted in 1997, according to state reports. Even as similar statutes have expanded to more venues — including, this year, Hawaii — it has remained controversial.
California’s End of Life Option Act, which took effect in 2016, was suspended for three weeks this spring after a court challenge, leaving hundreds of dying patients briefly in limbo.
Thin and wan, with silver hair and piercing blue eyes, McQ still could have passed for the photographer’s model he once was. But McQ’s legs shook involuntarily beneath his dark jeans and his voice was hoarse with pain during a three-hour effort to tell his story.
Last November, doctors told McQ he had six months or less to live. The choice, he said, became not death over a healthy life, but a “certain outcome” now over a prolonged, painful — and “unknowable” — end.
“I’m not wanting to die,” he said. “I’m very much alive, yet I’m suffering. And I would rather have it not be a surprise.”
In late December, a friend picked up a prescription for 100 tablets of the powerful sedative secobarbital. For weeks, the bottle holding the lethal dose sat on a shelf in his kitchen.
“I was not relaxed or confident until I had it in my cupboard,” McQ said.
At the time, he intended to take the drug in late February. Or maybe mid-March. He had wanted to get past Christmas, so he didn’t ruin anyone’s holiday. Then his sister and her family came for a visit. Then there was a friend’s birthday and another friend’s wedding.
“No one is ever really ready to die,” McQ said. “There will always be a reason not to.”
Aaron McQ’s prescription bottle of secobarbital sodium.
Many people who opt for medical aid-in-dying are so sick that they take the drugs as soon as they can, impatiently enduring state-mandated waiting periods to obtain the prescriptions.
Data from Oregon show that the median time from first request to death is 48 days, or about seven weeks. But it has ranged from two weeks to more than 2.7 years, records show.
Neurodegenerative diseases like ALS are particularly difficult, said Dr. Lonny Shavelson, a Berkeley, Calif., physician who has supervised nearly 90 aid-in-dying deaths in that state and advised more than 600 patients since 2016.
“It’s a very complicated decision week to week,” he said. “How do you decide? When do you decide? We don’t let them make that decision alone.”
Philosophically, McQ had been a supporter of aid-in-dying for years. He was the final caregiver for his grandmother, Milly, who he said begged for death to end pain at the end of her life.
By late spring, McQ’s own struggle was worse, said Karen Robinson, McQ’s health care proxy and friend of two decades. He was admitted to home hospice care, but continued to decline. When a nurse recommended that McQ transfer to a hospice facility to control his growing pain, he decided he’d rather die at home.
Aaron McQ and Karen Robinson go boating on Seattle’s Portage Bay in 2013, before he fell ill.
“There was part of him that was hoping there were some other alternative,” Robinson said.
McQ considered several dates — and then changed his mind, partly because of the pressure that such a choice imposed.
“I don’t want to talk about it because I don’t want to feel like, now you gotta,” he said.
Along with the pain, the risk of losing the physical ability to administer the medication himself, a legal requirement, was growing.
“I talked with him about losing his window of opportunity,” said Gretchen DeRoche, a volunteer with the group End of Life Washington, who said she has supervised hundreds of aid-in-dying deaths.
Finally, McQ chose the day: April 10. Robinson came over early in the afternoon, as she had often done, to drink coffee and talk — but not about his impending death.
“There was a part of him that didn’t want it to be like this is the day,” she said.
DeRoche arrived exactly at 5:30 p.m., per McQ’s instructions. At 6 p.m., McQ took anti-nausea medication. Because the lethal drugs are so bitter, there is some chance patients won’t keep them down.
Four close friends gathered, along with Robinson. They sorted through McQ’s CDs, trying to find appropriate music.
“He put on Marianne Faithfull. She’s amazing, but, it was too much,” Robinson said. “Then he put on James Taylor for, like, 15 seconds. It was ‘You’ve Got a Friend.’ I vetoed that. I said, ‘Aaron, you cannot do that if you want us to hold it together.'”
DeRoche went into a bedroom to open the 100 capsules of 100-milligram secobarbital, one at a time, a tedious process. Then she mixed the drug with coconut water and some vodka.
Just then, McQ started to cry, DeRoche said. “I think he was just kind of mourning the loss of the life he had expected to live.”
After that, he said he was ready. McQ asked everyone but DeRoche to leave the room. She told him he could still change his mind.
“I said, as I do to everyone: ‘If you take this medication, you’re going to go to sleep and you are not going to wake up,'” she recalled.
McQ drank half the drug mixture, paused and drank water. Then he swallowed the rest.
His friends returned, but remained silent.
“They just all gathered around him, each one touching him,” DeRoche said. Very quickly, just before 7:30 p.m., it was over.
“It was just like one fluid motion,” DeRoche said. “He drank the medication, he went to sleep and he died in six minutes. I think we were all a little surprised he was gone that fast.”
The friends stayed until a funeral home worker arrived.
“Once we got him into the vehicle, she asked, ‘What kind of music does he like?’ ” Robinson recalled. “It was just such a sweet, human thing for her to say. He was driving away, listening to jazz.”
McQ’s friends gathered June 30 in Seattle for a “happy memories celebration” of his life, Robinson said. She and a few others kayaked out into Lake Washington and left McQ’s ashes in the water, along with rose petals.
In the months since her friend’s death, Robinson has reflected on McQ’s decision to die. It was probably what he expected, she said, but not anything that he desired.
“It’s really tough to be alive and then not be alive because of your choice,” she said.
“If he had his wish, he would have died in his sleep.”
Courtesy of The New York Times.com | By Karen Brown | Illustration by Arianna Viaro | Originally Published 01.06.2018 | Posted 02.21.2018
When my father was dying of pancreatic cancer last summer, I often curled up with him in the adjustable hospital bed set up in his bedroom. As we watched episodes of “The Great British Baking Show,” I’d think about all the things I couldn’t promise him.
I couldn’t promise that the book he’d been working on would ever be published. I couldn’t promise he would get to see his childhood friends from England one more time. I couldn’t even promise he’d find out who won the baking show that season.
But what I could promise — or I thought I could — was that he would not be in pain at the end of his life.
That’s because after hearing for years about the unnecessary medicalization of most hospital deaths, I had called an in-home hospice agency to usher him “off this mortal coil,” as my literary father still liked to say at 83.
When a doctor said my father had about six months to live, I invited a hospice representative to my parents’ kitchen table. She went over their Medicare-funded services, including weekly check-ins from a nurse and 24/7 emergency oversight by a doctor. Most comfortingly, she told us if a final “crisis” came, such as severe pain or agitation, a registered nurse would stay in his room around the clock to treat him.
Courtesy of KALW.ORG | By Joann Mar | Photo by Joann Mar | Originally Published 09.20.2017 | Posted 01.20.2018
There’s an increased use of live music at Bay Area’s major hospitals and hospices to bring healing and comfort to people who are near death.
Music At The End Of Life
Hospitals are not the most relaxing places for people nearing the end of life. The intensive-care units, lobbies and hospital wards are full of glaring bright lights and institutional noises.
In this stressful environment, music can be the great equalizer. The soothing sounds can bring peace and calmness. Music can help defuse the tension felt by anxious patients and their families. Today, in many of the Bay Area’s major medical centers, musicians are playing in hospital lobbies and at the bedside.
“One of the hottest topics is music and the brain,” says Judith Kate Friedman, a professional songwriter who works with seniors. “Music lights up the brain more than almost any other human activity.”
It’s difficult to believe these days, when so many of us have had some experience of moving toward death with a loved one in hospice, or even a stranger on the CaringBridge website, how “badly” people died in this country until very recently. That’s the word Dr. Ira Byock uses. He began his life in emergency and family medicine and recalls that when people were deemed to be dying — when what was wrong with them was beyond “fixing” — they too often died in pain in the hospital or were simply sent home. Doctors practicing now still recall their training, implicit and explicit, that death was a failure of the body, and of medicine. We turned away from it, scientifically and culturally.
The palliative care and hospice movement arose first in England and then took hold in the U.S. in the 1970s and 80s to compassionately treat the pain of chronic illness and all the suffering — physical and otherwise — as the end of life approaches. Its spread has converged with the continued advance of medicine. In our lifetimes, many forms of cancer have transformed from fatal diagnoses to chronic illnesses.
Physicians are trained to cure, so conversations about a patient’s final days can be difficult. But they’re vital. Twenty-eight percent of Medicare dollars—about $170 billion annually—are spent during a patient’s last six months of life, often on futile treatments that lead to suffering.
That’s why many medical schools are including palliative and hospice care—which helps patients deal with the symptoms and anxieties of a chronic or serious illness—within their curriculum.
While the field has grown in recent years, most health care facilities lack access to specialists trained to navigate such illnesses. The patient, even in the last months of their life, is still his or her own best advocate.
Courtesy of NPR | By Emily Siner | Originally Posted 08.24.2014 | Published 11.22.2017
The Threshold Choir brings music to those on the threshold of life — people who are dying. The first group started about a decade and a half ago. Now there are choirs in 120 cities, and even a few countries.
One of the newer chapters is in Nashville. On a recent day, Tammy Heinsohn and two other choir members were going room to room at a hospice there, introducing themselves and offering to sing some lullabies.
