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"It could be everyday now": Why is it important how you die?



He can not go so we unlock the door and reach him immediately. The low hum of an oxygen concentrator greets us.

Tubes run around Naylor's ears, over his face and roll into his nostrils. At his side are embedded framed family photos, each capturing intimate moments of his life.

We also experience an intimate moment with him – but for a completely different reason.

He dies.

A Nottinghamshire hospice team taking care of the terminally ill is three hours on a night shift. Naylor is the third patient they visit.

He is struggling with diabetes and had multiple heart attacks. His breathing is heavy and pronounced. He exhales before slowly opening his mouth to say, "I'm stuck on this bed, I've been here for more than a year, I can not get out, I can not go to the bathroom, I can not do anything. " I'm just lying here.

"I'm almost at the end of my life, it could be every day now."

Access to Hospice Night Services like this is uncommon from outside, as patients are in a very vulnerable stage of life.

However, the hospice team granted CNN access because they wanted to. Showcase how palliative care is offered in the UK, and let us think more about the kind of death we want for ourselves and our loved ones. The topic is very important to me because the team looked after my father before he died this year

"We all think we are immortal, so we want to invest more money to save lives; No money in palliative care because we do not accept that we will die, "said Tracey Bleakley, chief executive of Hospice UK, the hospice umbrella.

  Peter Naylor in his bed in Bilborough, Nottingham

"It Means Everything"

Hospices provide specialized care to people with terminal and life-limiting illnesses and coordinate them with the UK's National Health Service to care for people who are often at the terminal stage of life, usually those who no longer want to be in the hospital and want to be cared for at home.

It costs £ 1.4 billion a year to run hospices. According to the charity Hospice UK, they are partially funded by the National Health Service but heavily dependent on donations and donations.

During our time in the overnight hospice team, we met several people who were treated at the end of their life's sensitivity. Some patients did not want to be interviewed or photographed by their personal circumstances.

Naylor was ready to talk to us. After leaving a nursing home, the 70-year-old decided to receive the treatment at the end of his life in his own bungalow.

His condition, however, gradually deteriorated. Once he fell while trying to go to the bathroom. He was alone and could not move. It took three hours for someone to come help him.

As a result, the care he receives has been increased, and he not only receives overnight visits from the hospice team, but now has a full-time caregiver who lives with him during the day . The extra support allows him to relax and sleep better.

"It means everything," he said. "It's the night when I get scared when I'm alone, but I know when they're coming and I can call them when I really need them."

The modern hospice movement began in Britain in the 1960s, says Allan Kellehear, professor of end-of-life care at the University of Bradford. In the 70's it spread in the United States.

Life expectancy increased and the way people died changed fundamentally, he said. More and more people died of long-term, chronic diseases such as cardiovascular disease and cancer, not infectious diseases.

The hospices took the mantle of caring for people with these long-term incurable diseases. There are now more than 200 hospices in the UK. The number of hospice programs in the United States has increased since the launch of the first program in 1974. At the end of 2013 it was 5,800.
However, in many low and middle income countries, end of life care is poor, according to The Lancet Global Health. Tens of millions of people in need of palliative care have severely limited access to oral morphine for pain relief.

Naylor is relentless that he wants to die in his own home – something that happens to less than a quarter of people in England, according to the UK National Statistics Bureau.

He is not alone. Before we meet him overnight during the hospice shift, we visit the home of Harry and Serena Perkins in Nuthall, Nottingham, just before midnight.

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

We are greeted by Harry's warm gaze in the hallway. The 96-year-old was an engineer in World War II. After greeting us quickly, he shuffles into the lounge with his wife.

Since 1973 he is married to Serena. They met when Harry was admitted to a hospital with pneumonia. Serena was his receiving nurse.

"I would have said that this is the best girl I've ever married," he says, sitting next to her on the sofa.

  Harry and Serena Perkins at their home in Nuthall, Nottingham.

The gut has cancer and heart problems, uses the hospice's daily support once a week when it sees friends and has access to a day treatment. At 11.30am he is also visited by the night support team. each night.

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

Despite his state of health, Harry seems more worried about Serena's well-being than his own.

"We look forward to seeing you every night, they are nice people, they bring me up to bed, kill me," he says. "But they also talk to my wife, keep their company, which is very important."

Serena is grateful, too. "I did not know how hard my shoulders were until they came, which really gave me back my freedom," she says.

The care helps Harry to live with Serena in her home. It allows him to enjoy the quality of life he wants.

When we leave, Harry gets up to get ready for bed. He shakes my hand firmly and murmurs a saying by former British Prime Minister Winston Churchill: "Never give up, never, never, never."

  Deborah Royston, a caregiver for the Community Care support for the night, with Harry Perkins.

Who cares for the care?

The Nottingham Hospice, with which CNN spent time, is a charity.

Although one third of the income comes from the British National Health Service, the rest comes from fundraising. According to Jo Polkey, director of Nottinghamshire Hospice, the hospice has to raise an average of GBP 7,000 per day to use the services it provides. Many hospices across the country have a similar funding deficit.

"Someone who needs palliative care is when there is no treatment, trying to make someone as comfortable as possible, we want to contribute to his life instead of seeing it as the end," she says.

Its main service is Hospice at Home, which employs more than 60 nurses and caregivers to care for people with terminal and life-limiting diseases at home. They also provide the night support team, a daytime therapy unit, and a bereavement and care service.

"We often deal with humans at the end of life and in the last days, weeks and hours of life," Polkey said. "I think our average length of stay [of a patient] is about 26 days and they do not stay in the service for long before they die."

What does it take to be a member of a hospice team? She says first that they are very "resilient".

The night shift is probably where this applies most clearly.

  Deborah Royston and Sonia Lee during their nightly support shift.

"The People Are Dying in Their Shift"

The two supervisors overnight, Deborah Royston and Sonia Lee, describe the ups and downs of their jobs between patient visits.

Apart from the late hours, the work requires a lot of driving. Many of the patients live in Nottinghamshire, a district near central England, home to just over 800,000 people. The shift usually starts at 10:00 pm. and ends before 7 am

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

"It's really sad … dealing with death every day, sometimes people are dying in your shift, but it's good that you can be there for them and their loved ones at this time of mourning. "

Another visit we made was Wollaton's hometown of Linda Wagner, whose husband Bob relies on overnight support for hospices. He has a progressive supranuclear palsy, a rare condition that can cause problems with balance, movement, vision, speech, and swallowing.

"I know some people do not believe in angels, well, I do class [overnight carers] – as angels," she said. "I did not know the support was there before, when I wake up, I know there are other people going through it, it's just a wonderful thing."

  Linda Wagner, right, with Hospice at Home Nurse Karen.

Despite the difficulties associated with Royston's field, she described the job as "passion." She has been helping to support the night for twelve years, and has the opportunity to build relationships with patients and their families, though they can wear down their hearts.

"I just love it, it makes my heart feel good, I get pretty emotional about meeting nice, wonderful people."

A looming crisis in palliative care?

A pun does not always seem appropriate when it comes to death, but Polkey's use of one seems to strike a chord: "People really want to come to our service," she says.

For the past three years, hospices have helped more than 200,000 people across the country, says Bleakley of Hospice UK. However, research carried out by their organization in 2017 revealed that 118,000 people per year can not benefit from the hospice and palliative care because they live in an economically disadvantaged area, live alone or, among other things, have a certain terminal status.

Bleakley believes there is a crisis in palliative care that will only worsen.

"We had a massive baby boom after the war, and now these people are starting to die, so we will already have an increase in the mortality rate, all of us live longer and get sick longer at the end of life."

Die aging UK population will only increase pressure, says Bleakley. In 2017, 12 million people in the UK were 65 and over, according to the National Statistics Office, about 18.2% of the population.
In a survey earlier this year, more than eight out of ten adults in the UK said that the role of hospices would become more important over the next decade.

Bleakley was also concerned about what Britain's planned withdrawal from the European Union could bring.

"Anything that affects consumer confidence, from companies that have extra money to fund hospice, to people opting for a fundraising marathon – many things are affected by Brexit," said you.

"And on the labor side, we'll see more members of the National Health Service being sucked out."

Challenges of Inclusion

Another challenge for practitioners is inclusiveness.

Kellehear from the University of Bradford says that not many ethnic minority groups in Britain access palliative care.

The Nottinghamshire Hospice police chief noted, "We take care of many white middle-class citizens, but we are in one of the most diverse cities in the country … We really want to get into the communities." Diversity is something in which we're working. "

Hospice UK is running a campaign called Open Up Hospice Care to try to solve this problem.

"There are people in the LGBT community … minority groups, people in prison – many of these people believe that many of the traditional services do not work for them," said Bleakley of Hospice UK.

She also says that funding for hospices will be a fundamental issue.

The National Health Service's long-term plan, which includes the UK's key health plans and priorities for the next 10 years, has a greater focus on community care and palliative care education, but there are none, according to Bleakley Further funds would be put into palliative care.

"It costs 1.4 billion (pound) a year to run hospices and the NHS uses 350 million, they do not pay the true cost of care or anything like that." She said.

But it does not just make the government responsible. She says society as a whole needs to be more involved in care at the end of life.

Kellehear agrees. It promotes the idea of ​​compassionate communities and cities, a more holistic approach to palliative care that includes both the bereaved and the dying.

It is based on the idea that nursing is not simply due to doctors, nurses and nurses surrounding families of dying people. Instead, the wider community should intervene to help people with deadly diseases.

"We should not wait for disaster, it's about going to the schools, going to work and saying," There's something for everyone. What are you doing to make your contribution? "In Britain, there are not enough of them."

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

"The people we forget in palliative care are the survivors, who often suffer from similar social consequences People with life-limiting illnesses: depression, anxiety, loneliness, social rejection and even suicide," he added.

"These people are best helped when communities come together to help the people who are threatened by these things."

Bleakley believes that we must face the reality of death more often.

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


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