End-of-life care: ‘Shortfall in NHS services’

By Nick Triggle

There is a shortage of specialist end-of-life care in England, causing unnecessary suffering, experts say.

ENDOFLIFEPeople dying with the most complex conditions, such as cancer, dementia and heart and liver failure often need support from a range of professionals.

But a report – produced by end-of-life doctors and nurses – said many were going without the help they needed.

As well as being an inefficient use of NHS money, this could be causing greater distress at death, they said.

Specialist end-of-life care requires teams of professionals, including doctors, nurses, social workers, psychologists and pharmacists to work together to help manage pain and disability in the final year of life and ensure patients are treated with dignity and compassion.

As well as helping to achieve as comfortable a death as possible, the support can also reduce costs to the NHS by keeping people out of hospital, said the report, produced by a host of specialist bodies including the Association of Palliative Medicine and Marie Curie Cancer Care.

‘Paralysis’
Not everyone who dies needs such help as some deaths are sudden or unexpected.

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Palliative care has the ability to save the NHS money and improve the care of patients”

Dr David Brooks
Association of Palliative Medicine
But the ageing population means there is a growing number of people with complex, long-term problems that need carefully managing at the end of life.

The report said it was estimated that between 160,000 to 170,000 people a year were currently receiving specialist end-of-life care.

The groups said this was a “significant” shortfall on the numbers who needed help. It said more than 350,000 people required some form of end-of-life care, the majority of whom would benefit from specialist care.

Dr David Brooks, vice-president of the Association of Palliative Medicine, said: “There is a shortfall in services that needs to be addressed. Palliative care has the ability to save the NHS money and improve the care of patients.”

It comes after there has been mounting concern about one part of end-of-life care, the Liverpool Care Pathway.

Complaints
At the end of last year there were suggestions the regime, which allows doctors to withdraw treatment in the last days of life, was being misused in places.

Relatives of dying patients had complained that their loved ones had been put on the pathway without consent.

Professionals working in the field had agreed to launch a review into how the system was working, but that was then put on hold when ministers said it should be done independently.

That review has yet to start, although the government is expected to announce details of it in the coming weeks.

Dr Brooks said the profession was keen to find out what had gone wrong, but he said the controversy and wait for the review had created a “bit of paralysis”.

“It is important we get this right and tackle what was happening, but there is a little frustration it is taking some time.”

Complete Article HERE!

On The Radio with Chris MacLellan — Tuesday, 01/08/13

I’m delighted to announce that I will be sharing the airwaves with my friend and colleague, Chris MacLellan, from Be A Healthy Caregiver fame.  We’ll be on blogtalkradio Tuesday, 01/08/13 at 1:00pm eastern time and 10:00am west coast time.

Find all the information HERE!

Come and join the conversation; you’ll be so glad you did!

And be sure to visit Chris on his site, The Purple Jacket and follow him on Twitter @TheBowTieGuy.

See Ya Tuesday!

healthy caregiver

How we can change end-of-life medicine

A gift Americans owe to themselves and their country in 2013 is lessons on how to die.

our-livesDoctors know this. They don’t spend their final hours like the other 2.4 million Americans who die every year. They’ve seen patients hooked up to tubes in hospital beds, suffering unnecessary pain and indignity, while tens of thousands of dollars are spent on every medical option to extend lives that are clearly near the end. According to a Johns Hopkins study, most doctors have advance care directives, reject CPR and live their final days with dignity, at home and in hospice, surrounded by loved ones.

The Mercury News’ Lisa M. Krieger has spent the past year grappling with our approach to death in America. Her insightful, heartfelt series, “Cost of Dying,” concludes Sunday with a practical analysis of how to change end-of-life medicine. She encourages us to take charge of our own deaths, tell doctors what we want, reject treatments that we really know can’t help and — this is most important — consider suffering, not death, the enemy. Expanding access to hospice care is a key to all this.

Pain can be managed very well today. Most Americans could die in peace at home. But nearly 80 percent die in hospitals or nursing homes, even though surveys show these are the last places the vast majority wants to be. About 20 percent die connected to tubes in intensive care units, the least humane and most expensive end of life care.

We need a culture change in our approach to death. We need to focus more on dying with dignity and less on extending life to the last possible minute. This will be better for individuals, and it will be better for America: Our health care costs are killing our economy, and pointless end-of-life care is a big part of the reason.

This country spends nearly twice as much per capita on health care as any of its competitors in world markets, but by most measures, it achieves poorer results than European counterparts. A major reason is that the 5 percent of Medicare patients who die every year consume almost one-third of all Medicare expenditures. And one-third of those costs are incurred in the final month of life, when there is no chance of a real recovery.

The number of Americans 65 and older will double in the next 20 years, putting more pressure on our medical system. People understandably worry that treatments that could benefit them may be less accessible, but the enormous amount of money paid to extend suffering at the end of life benefits no one.

Today 75 percent of Americans could die comfortably at home with hospice care. But we have to make that choice personally, talk frankly with doctors and family — and work to change family and community attitudes.

All we need is the will.

Complete Article HERE!

Let’s talk about dying

Lillian Rubin lives and works in San Francisco. She is an internationally known writer and lecturer, who has published twelve books over the last three decades. Last evening her latest essay appeared in Salon. It’s brilliant and a must read.  This courageous woman breaks open a discussion we are all literally dying to have. But so much in popular culture avoids and even prohibits this essential death talk. I commend Lillian for breaking this cultural taboo. Perhaps now others in the media will do likewise.

Lillian Rubin

Complete Article HERE!

Providing end-of-life care for special dogs

By Kim Bromley

IN JANUARY 2011, an old female dog was found across the highway from the Marin Humane Society. It had the appearance of an African village dog, emaciated, sick and having very few usable teeth. It also was the sweetest, gentlest, most affectionate dog many of us had met in a long time. A microchip scan revealed the dog’s name: Princess.

sad-sick-dog-by-This-Years-LovePrincess’ guardians were no longer interested in caring for the animal. The dog’s blood panel was unremarkable, and urinary tract infection it had was treatable. But the dog needed to get out more frequently at night than staff could manage, so Princess went into an overnight foster program in which its foster guardian picked the dog up at the shelter around closing time and brought it back the next morning before opening. In late March, I became one of the dogs overnight foster guardians.

Despite a zest for life and a love of people and other dogs, Princess continued to have minor but annoying health issues that included vomiting and diarrhea. The animal’s adoptability was in question.

It was inevitable that my husband and I developed a deep affection for Princess. So when we were asked to take the dog home for end-of-life hospice care, we agreed. The dog’s lack of appetite and continuing digestive problems along with a wet cough suggested the animal might not live much longer. Two months was one specialist’s guess.

As people who believe in gentle and dignified death, we were honored to offer refuge and peace to a sweet old dog and to make its final days warm and comfortable. My first order of business was to find something delicious for the dog to eat. Our resident dog eats a raw diet, and so it was the easiest thing in the world to give a chicken patty to Princess. The dog loved it and ate it right up. And after a few days its cough cleared up along with the vomiting and diarrhea. Could it be that the animal had a grain allergy? Because of the dog’s age and foster status, we never had Princess tested but we were struck by the coincidence.

After a few weeks we tried longer walks with Princess, something more robust than just a stroll around the block. The dog soon became part of my Saturday morning hike — a one-hour, 2.5-mile trek up and down fire roads in Pacheco Valley. Princess was a champ. The dog loved to ride in the car, visit friends and meet other dogs. We took the dog to the beach and on a couple of our dog vacations. In short, the animal thrived for another year. Princess was the salt of the earth and sweet like a homemade dessert. We started calling the dog Betty — for apple brown Betty. Sometimes, Betty Jean.

Eventually, Princess Betty Jean did show real signs of decline. Her legs began to fail, and walks became fewer and shorter.

After conferring with the Humane Society veterinarian we concluded Princess’ time had come.

On a beautiful fall day 16 months after she’d come to our house for hospice care, Princess went to her final sleep surrounded by those who had loved and cared for the dog since the day it arrived at MHS.

Complete Article HERE!

Men and Women

JPM

Maybe you’ve noticed it. I have many times. In a room where someone is dying, and people are gathered around, notice where the women are and where the men are. There are exceptions, but most of the time women are in the room, tidying up, grooming or stroking the hair of the patient, and talking to him/her. The men are normally in the hallway or waiting room. They go get food, run errands, anything that takes them away from the suffering. Why? Men tend to be fixers, and they cannot fix this, so they nervously pace until the women give them something to do. Women are much more comfortable nurturing and sitting, without the need to fix or solve anything. It’s simply built into us to be that way. We each play our role in this end-of-life ritual. It’s not always smooth, but we muddle through until the job of waiting is done.

attending a dying person

Complete Article HERE!

Cost of Dying: One nurse’s end-of-life choice was surprisingly simple — and liberating

by Lisa M. Krieger

In her last two months, Gayla Caliva stargazed and savored Jamaican food. She enjoyed picnics and her book club, trips to the zoo, the aquarium and the beach.

Her bucket list overflowed with forbidden foods. “And why shouldn’t it?” she reasoned.

She canceled her mammogram. “Teeth cleaning? Let it go!” she said.

How will you respond, when death calls your name?

Caliva chose comfort care over combat, rejecting life-prolonging dialysis for a life-affirming ending.

As a retired nurse, the free-spirited San Jose woman had seen plenty of bad deaths, and knew her failing kidneys would assure a more gentle demise, providing her the gift of time to say goodbye. How much time? Nobody could say.

But at 70, with no prospect of a cure, and influenced by her mother’s six-year dependence on dialysis, she foresaw only exhaustion when doctors gave her a choice in July.

“I didn’t have to think about it, because I already knew,” she said. “I didn’t want dialysis. Now I think, well now, I’ve signed my death sentence or something. I thought it would be scary. I can’t believe how unperturbed I was, how easy that came.”

She vowed to enjoy the dwindling days, savoring moments with her best friend and fellow nurse, Ann Raynor, and daughter, Diane Caliva.

The clarity of her decision also gave her loved ones the ability to celebrate her final days, more than suffer her death.

“It made you almost shift into those same gears,” Diane Caliva said. “It was like, OK, I’m just going to go with her on this, because she’s embraced it.”

Her mother’s one call for help was to Pathways Hospice, based in Sunnyvale. Like Caliva, 1.1 million Americans a year choose hospice care, in which nurses monitor patients and provide pain medication to ease them through life’s final journey, often at home.

Others come to a different conclusion, seeking treatments to prolong life that can buy precious time: a family graduation or wedding, perhaps.

The hard part is getting the information to make the right choice. A recent national study, published in the Oct. 25 New England Journal of Medicine, found that patients often fail to understand the limitations of treatment. Chasing miracles can delay the transition to comfort care, the journal concluded.

Gayla’s end in September was not, as she once dreamed, a romantic scene of winter sun streaming through the window, listening to the love duet from Puccini’s “Madame Butterfly.”

She slept a lot. She had trouble breathing, and there was confusion, with some agitation and pain. But her discomfort was brief and controlled. She was home, not hospitalized.

She died, like she lived, on her own terms.

“Live like a washrag? Weak as a kitten? All your food tastes like crap? That’s not a quality life,” she said. “I didn’t want that. Nope, not for me.”

Complete Article HERE!