Friday , April 16 2021

"It could be any day now": Why how to die things

CNN / Gabriel Smith
In a poll earlier this year, more than 8 out of 10 adult UK officials said the role of hospice would become more important in the next decade.

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(CNN) – It is approaching 1 am in Bilboro, a suburb of the British city of Nottingham. Peter Neilor, 70, was shot in his bed, only the yards from the front door of his small bungalow.

He can not go, so we unlocked the door and we immediately got to it. The low zoom of the oxygen concentrator welcomes us.

The pipes run around Nailor's ears and through his face and bend in his nostrils. Familiar family photos are placed on the shelf side, each capturing the intimate moments of his life.

And we are facing an intimate moment with him – but for quite another reason.

He's dying.

A The Nottinghamshire Hospice team that takes care of the terminal ill is three hours in a night shift. Naylor is the third patient to visit.

He is struggling with diabetes and has more heart attacks. His breathing is difficult and pronounced. He exhaled before opening his mouth to slowly say: "I'm stuck on this bed, I have more than a year, I can not go, I can not go to the bathroom, I can not do anything I'm just lying here.

"I'm close to the end of my life. It can be now every day."

External access to hospice night services, such as this, is unusual, as patients are at a very vulnerable stage of their lives.

But the Hospice team approved CNN access because they want to show how palliative care is provided in the UK and make us think more about the kind of death we love for ourselves and our loved ones. The topic is close to my heart, because the team looked at my dad before he died this year.

"We all think we are immortal, so we want to make more money in saving lives, there is no money to be put into palliative care because we do not accept that we will die," said Thrace Blakey, chief executive of Hospice UK, an umbrella hospice organization.

"That means everything"

Hospice offer specialized care and support for people with terminal and limiting animal diseases. They coordinate with the National Health Service of the United Kingdom to provide care for people who are often in the final stages of life, often those who no longer want to be in hospital and want to take care of their home.

It costs 1.4 billion pounds a year to run for hospice, according to the charity Hospice United Kingdom. They are partly funded by the National Health Service, but rely on fundraising and donations.

During our time with the hospice team at night, we met with more people who take care of the end of life. Given the sensitivity of their personal circumstances, some patients did not want to be interviewed or photographed.

Neilor wanted to talk to us. After leaving the foster care home, the 70-year-old decided to get a lifelong treatment in the comfort of his own bungalow.

But his condition is gradually deteriorating. On one occasion she fell as she tried to go to the bathroom. He was alone and could not move. It was three hours before someone came to help him.

As a result, the care he receives is increased, and he not only receives visits from the nostalgic hospice, but now has a regular carer who lives with him during the day. Additional support allows him to relax and sleep better.

"That means everything," he said. "It's the night I'll be scared when I'm alone. But, I know roughly when they come and they can call them if they really need it."

The modern hospitality movement began in the UK in the 1960s, says Alan Kelheyer, a professor of end-of-life care at the University of Bradford. It spread to the United States in the 1970s.

The expected lifespan has increased and the way people die is fundamentally exchangeable, he said. More people die from long-term, chronic diseases such as cardiovascular disease and cancer, not infectious diseases.

Hospitals have taken the caregiver people with these long-term terminal illnesses. Now, there are more than 200 hospices in the UK. The number of hospice programs in the United States is on the rise, since the first program began there in 1974; there were 5,800 from 2013.

However, in many low-income and middle-income countries, end-of-life care is poor, according to the Lancet Global Health magazine. Tens of millions of people in need of palliative care have seriously restricted access, even to oral morphine to relieve pain.

Neilor is adamant that he wants to die in his home – something that happens to less than a quarter of the people in England, according to the UK's National Statistics Office.

He is not alone. Before meeting him in a hospice shift overnight, we visit the home of Harry and Serena Perkins at Nutal, Nottingham, just before midnight.

It is obvious that this visit is routine for the hospice team and for the patient.

We are greeted by a warm look at Harry in the corridor. The 96-year-old was an engineer during the Second World War. After he quickly welcomes us, he moves into the living room with his wife.

He is married to Serena since 1973. They met when Harry was checked at a hospital with pneumonia; Serena was his nurse.

"I would say that this is the most beautiful girl I could ever marry," he says, sitting on the sofa next to her.

Harry, who has colon cancer and heart problems, uses the daily support provided by the hospita once a week when he sees friends and approaches to day-to-day therapy. He also visits the night support team around 11:30 am. every night.

"I thought it was a nuclear bomb that would take me, but it's over. So it will be my heart or the cancer that takes me."

Despite his health, Harry looks more concerned about Serena's well-being than his own.

"We look forward to coming every night, they are wonderful people, they take me to bed, they change me," he says. "But they also talk to my wife. Keep her company, which is very important."

Serena is also grateful. "I did not realize how much weight I had only my shoulders until they came in. It really restores my freedom in some way," she says.

This care helps Harry continue to live with Serena at their home. It allows him to enjoy the quality of life he loves.

As we prepare to leave, Harry stands to prepare for the bed. He firmly handles my hand and murmurs an objection from former British Prime Minister Winston Churchill: "Never give up, never, never, never, ever".

Who provides care?

Nottingham hospice CNN spent time with charity.

Although a third of their income comes from the United Kingdom National Health Service, the rest comes from fundraising; Hospice must raise an average of £ 7,000 (about $ 9,000) a day to use the services it provides, according to Joe Polkey, head of health care at Nottinghamshire Hospice. Many hospitals across the country face a similar lack of funding.

"One who is seeking palliative care is when there are no curative options, trying to make it as convenient as possible. We want to add our life instead of thinking about it as an end," she says.

Its main service is Hospice in the Home, through which more than 60 nurses and health workers help home for people with terminal and limiting animal diseases. They also provide nighttime support teams, day care unit and care and victim support services.

"We often face many people at the end of life and in the last few days, weeks and hours of life," Polke said. "I think our average length of stay [of a patient] is about 26 days. They do not stay in the services very long before they die. "

What is needed to be a member of the hospice? One of the first things she says is that they are very "resilient".

Night shift is probably where this is most obvious.

"People die in your shift"

The two carers at night, Deborah Royston and Sonia Lis, describe the high and low levels of their jobs between patient visits.

Except for late hours, work requires a lot of driving, with many patients living in Nottinghamshire, an area near central England, home to just over 800,000 people. Shifting usually begins at 10 am. and ends before 7 am.

Royston says it is particularly difficult when developing close relationships with patients.

"It's really a pity … to deal with death every day. Sometimes people die in your shift, but it's good that it can be there for both them and family members at that time of sorrow."

Another visit we made was Wallaton's home to Linda Wagner, whose husband, Bob, relies on supporting hospice at night. It has progressive supranuclear palsy, a rare condition that can cause problems with balance, movement, vision, speech and swallowing.

"I know that some people do not believe in angels. Well, I, but that's how I would class [overnight carers] – like angels, "she said." I did not know that the support was outside. If I fight, I know there are other people who go through it. It's just a wonderful thing. "

Despite the difficulties that came with the field of Royston, she described the work as her "passion". It helps to provide night support for 12 years and finds an opportunity to build relationships with patients and their families they meet, although it can be seriously ill.

"I just love it, it makes my heart feel good. I feel emotionally because you will meet some nice, beautiful people."

Are threats to palliative care a threat?

The plate does not always seem suitable when talking about death, but the use of Slow Down on one seems to get to the chord: "People are dying to come to our services," she says.

Over the past three years, hospices have helped over 200,000 people across the country annually, says Blekly Hospice in the UK. However, research by her organization in 2017 showed that 118,000 people can benefit from hospice every year and receive palliative care because they live in an economically disadvantaged area, live alone or have a certain kind of terminal condition, among other reasons.

Blakey thinks there is a crisis in palliative care that will only get worse.

"After the war, we had a massive boom, and now these people are starting to die, so we will already have an increase in the mortality rate. We all live longer, and we are all sick longer for life."

The old population in the UK will only increase pressure, Blakey says. In 2017, 12 million people in the UK were 65 and older: about 18.2% of the population, according to the Office of National Statistics.

In a poll earlier this year, more than 8 out of 10 adult adults in the UK say the role of hospice will become more important in the next decade.

Blakey also worried that Britain's planned exit from the European Union could bring it.

"Something that affects consumer confidence, companies that have extra money to support hospices financially for people who choose to run a marathon to raise money – Brexit affects a variety of things," she said.

"And on the side of the workforce, we will see more members exhausted" by the National Health Service.

Inclusion challenges

Another challenge for practitioners is inclusiveness.

Kellerrear, of the University of Bradford, says that not many groups of ethnic minorities in the UK have access to palliative care.

Nottinghamshire Hospice was noticed: "We care for many white people of the middle class, but we sat in one of the most diverse cities in the country … We desperately want to reach communities. Diversity is something we are working on."

Hospice UK leads a campaign called Open Up Hospice Care to try to answer this question.

"There are people in the LGBT community … minority groups, prisoners – many of these people think that most of the traditional services do not work for them," Blakeyli from Hospice, UK.

She also says funding will be a fundamental issue for hospice.

The long-term plan of the National Health Service, targeting key health plans and priorities for the United Kingdom for the next 10 years, includes a greater focus on community care and palliative care, but Blekuli says there are no indications that more funds will be placed in palliative care.

"It costs 1.4 billion (£) a year to run a hospice, and the NHS is putting 350 million euros, they do not put in the right price of care or something like that." she said.

However, it not only holds the responsible government. She says society as a whole needs to be fostered when it comes to caring for the end of life.

Kellear agrees. He promotes the idea of ​​compassionate communities and cities, a more holistic approach to palliative care, which includes the bereaved ones as well as those who die.

It is based on the idea that caring should not only affect physicians, nurses and nearby families of people who die. Instead, the wider community should support people with terminal illnesses.

"We do not have to wait for a catastrophe to happen, but to go to schools, to go to jobs and say" it looks like this is everyone's work. "What are you doing to do this? Not enough for what is happening in the UK. "

For example, he says, schools should prepare children for what to do if a colleague loses a loved one.

"The people we forget in palliative care are grieving, who often suffer from similar social consequences as people with restrictions on life, such as depression, anxiety, loneliness, social rejection and even suicide," he added.

"These people are best assisted when communities congregate to support people at risk of these things."

Blakey thinks that we should more often face the reality of death.

"Good death is an inheritance for the people we leave behind."

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