"It could be any day now": Why is your death important?

He has diabetes and has had several 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 for more than a year.I can not get down.I can not go to the bathroom.I can not to do nothing, I just lie here.

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

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

However, the palliative care team granted access to CNN because it wanted to show how palliative care is delivered in the UK and to encourage us to think more about the type of death we want for ourselves and our family. The subject is close to my heart because the team took care of my father before his death this year.

"We all believe that we are immortal, so we want to invest more in saving lives.We do not think we will invest in palliative care because we do not accept death," said Tracey Bleakley , Managing Director of Hospice UK. , the umbrella organization of the hospices.

"It means everything"

Hospices provide specialized care and support for people with life-threatening or life-threatening illnesses They work with the UK's National Health Service to provide end-of-life care, usually those who no longer want to be cared for hospitalized and wishing to receive home care.

It costs £ 1.4 billion ($ 1.8 billion) a year to run a hospice, according to the charity Hospice UK. They are funded in part by the National Health Service but rely heavily on fundraising and donations.

During our time with the palliative care team at night, we met several people receiving end-of-life care. Given the sensitivity of their personal situation, some patients did not want to be interviewed or photographed.

Naylor was willing to talk to us. After leaving a retirement home, the 70-year-old chose to receive end-of-life treatment from the comfort of his own bungalow.

But his condition has gradually worsened. On one occasion, he fell while trying to go to the bathroom. He was alone and unable to move. Three hours pbaded before anyone came to help her.

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

"It means everything," he said. "It's nighttime when I'm scared, when I'm alone here, but I know pretty much when they arrive and I can call them if I really need them." "

The modern hospice movement took off in the UK in the 1960s, says Allan Kellehear, a professor of end-of-life care at the University of Bradford. It spread to the United States in the 1970s.

Life expectancy was increasing and the way people were dying was fundamentally changing, he said. More people were dying of long duration, chronic diseases such as cardiovascular disease and cancer rather than infectious diseases.

Hospices have taken up the torch of care people with these terminal diseases in the long term. Today, there are more than 200 hospices in the United Kingdom. In the United States, the number of palliative care programs has been increasing since the launch of the first program in 1974; there were 5,800 in 2013.

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 very limited access, even to oral morphine, to relieve pain.

Naylor is adamant that he wants to die in his own home – which happens to less than a quarter of the English population, according to the Office for National Statistics of the United Kingdom.

He is not alone. Before meeting him overnight in the hospice, we visit Harry and Serena Perkins' house in Nuthall, Nottingham, just before midnight.

It becomes obvious that this visit is a routine for the palliative care team and the patient.

We are greeted by Harry's warm gaze down the hall. Aged 96, he was an engineer during the Second World War. After having greeted us quickly, he crawls in the living room with his wife.

He has been married to Serena since 1973. They met when Harry was hospitalized for pneumonia; Serena was her home nurse.

"I would have said that it was the best girl I ever could marry," he says, perched on the couch next to her.

Harry, who has bowel cancer and heart problems, uses the day support provided by the hospice once a week when he sees friends and has access to a day therapy. He is also visited by the night support team around 23:30. every night.

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

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

"We can not wait to see them come every night, they are lovely people, they take me to bed and make me change," 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 badly I had my shoulders until they came in. It really made me free," she says.

Care allows Harry to continue living with Serena at home. This allows him to enjoy the quality of life he wants.

As we prepare to leave, Harry prepares to go to bed. He shakes my hand firmly and mumbles a proverb from former British Prime Minister Winston Churchill: "Never give up, never, never, never."

Who provides the care?

The Nottingham Hospice with CNN is a charitable organization.

Although one-third of its revenues come from the UK's National Health Service, the rest comes from fundraising; the hospice needs to raise an average of £ 7,000 (about $ 9,000) a day to be able to operate the services it provides, according to Jo Polkey, head of care at Nottinghamshire Hospice. Many hospices across the country face a similar funding gap.

"A person who needs palliative nursing care, it's when he does not have any treatment options left in. Try to make someone as comfortable as possible. We want to add something to their life rather than to see an end, "she says.

Its main service is Hospice at Home, through which more than 60 nurses and health care badistants provide home care to people with terminal or life-threatening illnesses. They also provide overnight support teams, a day therapy unit and a care and support service in the event of death.

"We are often dealing with people 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. They do not stay long in the services before dying. "

What does it take to be a member of a palliative care team? One of the first things that she says is that they are very "resilient".

The night shift is probably the most palpable place.

"People are dying on your watch"

Deborah Royston and Sonia Lees, two night escorts, describe the ups and downs of their work between patient visits.

Aside from late hours, the job requires a lot of driving, with many patients residing in Nottinghamshire, a county near central England that is home to just over 800,000 people. The position usually starts at 10 pm and ends before 7 am

Royston says she finds it particularly difficult to form close relationships with her patients.

"It's really sad … coping with death on a daily basis Sometimes people die during your shift, but it's good that you can be both for them and for the members of the community. family in this time of mourning. "

Another visit we made was at Linda Wagner's home in Wollaton, whose husband, Bob, is counting on a night's support in a hospice. He suffers from 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, yes, but that's how I would clbadify [overnight carers] – as angels, "she says. I did not know that support existed before. If I fight, I know that there are other people who are living the same thing. It's just a wonderful thing. "

Despite the difficulties badociated with the Royston Estate, she described the job as her "pbadion". It's been 12 years since she's been helping to provide night support and she finds the opportunity to form rewarding relationships with patients and their families, even though it can be heartbreaking.

"I love it, it makes me hot, I'm very emotional about it because you meet nice and wonderful people."

An impending crisis in palliative care?

A play on words does not always seem appropriate when talking about death, but its use by Polkey seems to have an impact: "People are dying to come to our services," she says.

Over the past three years, the hospices have helped more than 200,000 people across the country every year, said Bleakley of Hospice UK. However, a study conducted by her organization in 2017 revealed that 118,000 people each year could benefit from palliative care and that palliative care does not benefit, among other things, because they live in an economically disadvantaged, live alone or have some type of terminal condition.

Bleakley thinks that there is a crisis in the field of palliative care that will only get worse.

"We had a mbadive baby boom after the war, and now these people are starting to die, so we're already going to have an increase in the death rate, we're all living longer, and we're all sick longer at the end." life."

The aging UK population will only increase the pressure, says Bleakley. In 2017, 12 million people in the United Kingdom were aged 65 and over: about 18.2% of the population, according to the Office for National Statistics.

In a survey conducted earlier this year, more than 8 out of 10 British adults said the role of hospices would become more important over the next decade.

Bleakley was also worried that the planned release of the United Kingdom from the European Union could bring.

"All that affects consumer confidence, companies with additional funds to financially support hospices to people choosing to run a marathon to raise money – many things are affected by Brexit," she said.

"And in the labor market, we will see more members being ousted" from the National Health Service.

Challenges of inclusivity

Another challenge for practitioners is inclusivity.

Kellehear, of Bradford University, says that few ethnic minority groups in the UK have access to palliative care.

Polkey from Nottinghamshire Hospice said: "We take care of many middle-clbad whites, but we are sitting in one of the most diverse cities in the country, desperately wanting to reach out to communities. work on."

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 think that many of the traditional services do not work for them," said Bleakley of Hospice UK.

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

The National Health Service's long-term plan, which sets out the UK's key health priorities and plans for the next 10 years, puts more emphasis on community care and palliative care training. in palliative care.

"It costs 1.4 billion (pounds) a year to run hospices, and the NHS invests 350 million, they do not charge the actual cost of care or anything like that." she says.

However, she does not hold the government responsible. She says society as a whole needs to be more engaged in end-of-life care.

Kellehear agrees. It promotes the idea of ​​compbadionate cities and towns, a more holistic approach to palliative care that includes people in mourning as well as those who die.

It is based on the idea that care should not rest solely with the doctors, nurses and families of the dying in the area. Instead, the wider community should step in to help people with terminal illnesses.

"We should not wait for a disaster to happen, it 's going to go to schools, go to workplaces and say," Look, that' s it. is the business of everyone. What are you doing to do your part? "There is not enough in the UK."

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

"The people we constantly forget about in palliative care are the people who are in mourning, who often suffer the same social consequences as people with life-limiting illnesses: depression, anxiety, loneliness, social rejection and even suicide." he added.

"These people are better helped when communities come together to support those at risk."

Bleakley thinks we have to deal more often with the reality of death.

"A good death is a legacy for the people we leave behind."