The death trap

Why we hardly ever die how we want

29th January 2018

You look up and see your family. They’ve filled the room, these people who love you more than anything. You’re weak but you don’t feel pain, maybe there’s a morphine drip, hidden tastefully out of sight. Someone reaches over to squeeze your hand. You smile, you close your eyes, and the lights go dim.

You’re dead.

For a select few of us maybe that’s how it will happen, an easy death surrounded by friends and family. But the reality of dying is likely to be far messier and more complex. As advances in medical care have prolonged our lives, they’ve also prolonged the act of dying. Diseases that would once have been immediately fatal, can be staved off, their symptoms ameliorated, if not banished.

In the UK, most of us die of circulatory and respiratory diseases, of slow and fast-growing cancers. As the population ages, more of us are dying of complications from dementia and Alzheimer’s. These are the diseases of wear and tear, of long lives propped up by rich diets and good medicine. Even if you’re one of the lucky few who will spend their final moments cocooned by family, you’re likely to have spent months, if not years, staring down your own death.

Mortality

Over the past decade, there has been growing public interest in mortality. In the US, there’s the so-called death positive movement whose aim is to open up the conversation around dying. Here in the UK, there’s been an upsurge of DIY funerals, online will writing services, and Death Cafes where members of the public can meet to speak about dying. The Guardian recently ran an article explaining “how death got cool”.

What’s much less clear is whether this conversation is actually translating into better end of life care. There remains an enormous discrepancy between how we want to die and how most of us are dying. In the UK, roughly two-thirds of people report wanting to die at home and only 8% in hospital. However, in reality, those figures are reversed, with 20.8% of people dying at home and 54.8% in hospital. Even more troubling, in 2008 the National Audit Office found that 40% of people who died hospital did so without a clinical need.   

It’s obvious that death is having its moment in the spotlight. The question now is whether the emergence of mortality as a popular theme is having any practical effect: do we really know more about death and is that changing how we die?

People have a lot of questions about the process of dying because they’re just not familiar with it

“People have a lot of questions about the process of dying because they’re just not familiar with it,” palliative care doctor Angela Halley tells me. “They haven’t seen their granny or grandpa die, they haven’t had a dead body in the house. Hundreds of years ago, there were a lot of infants who died, people knew people who had died during their life, where we now reserve that for our older years.”

Death

The first way that many of us look at death is through the medium of popular culture. But representations of dying in TV and movies are often what Dr. Halley calls a ‘cute death.’

“It’s a kind of cardiac arrest or people dying in bed with their loved ones around them with no symptoms, slipping away,” she explains. “There isn’t this kind of middle ground. The kind of more prolonged, difficult, symptomatic, problematic deaths that occur.”

Four years left to live

The reality of a prolonged period of active dying is something that Mark Hughes knows all too well. Now 55, he was just 37 when he started getting short of breath at work. His doctor sent him to hospital where he was diagnosed with pneumonia.  

“They couldn’t find out why my lung wouldn’t reinflate,” he tells me. “I was in hospital just short of a month and they found in the third week that I had a tumour the size of a golf ball in my lung. It took 12 hours to remove and I’ve got a scar from the front of my chest right round to my back. In 2010 there were problems again and then they found terminal bone cancer.”

Mark Hughes
Mark is trying to manage his pain 📸 Mark Hughes

In 2012, his doctor at UCLH told him there was a patient at a similar stage who had survived for a decade. By Hughes’s own reckoning that means he has four years left to live. Still, he knows that the progress of the disease is unpredictable.

“I’ve come to terms with my illness,” Hughes says. “I’ve been dealing with cancer now for 18 years. I knew the day would come that something like this would happen, so I’d already dealt with it. I live for each day and I don’t live for what will happen. If you start worrying about that now you’re not enjoying what time you’ve got left.”

Situations like Hughes’s are where palliative care doctors come in. One of the biggest misconceptions about palliative care, Dr. Halley tells me, is that it only takes place in the hours before death. The reality is that these doctors can spend years looking after terminally ill patients, intervening to provide symptom advice when necessary. Talking to Hughes, it’s clear that pain management is a delicate balancing act.

“I’m on 100mg of morphine in the morning and 100 mg in the evening,” he tells me. “I’ve got so used to the tablets now they’re not really doing what they should. But I’m loathe to up them because then you start getting the swimmy head and the zonked out feeling.”

Stretched too thin

According to the charity Marie Curie, which helps terminally ill patients, palliative care is an area where medical services are stretched too thin. The charity sites a lack of palliative care services available in the community as a contributing factor to why so many of us die in hospital. There’s also a limited amount of funding in place for other kinds end of life care, like personal assistance.

“There is funding for care for people to die at home but there’s a limit to that,” Dr. Halley explains. “The physical practical care, in terms of toileting, washing, dressing, those kinds of things can be provided for but are limited by number of hours that can be given to someone at home. So often the rest of the care falls on the family and loved ones to meet that shortfall. If you don’t have a supportive family or there’s just some other reason why they can’t provide that care, there is a gap.”

For Dr. Halley, the answer is careful allocation of funding rather than more money. There will always be limited resources, she tells me, so it’s best to use them wisely. However, it’s hard not to see how a stretched system won’t result in unequal care. This extends beyond medicine to the rest of Britain’s welfare state. After his diagnosis, Hughes tells me, the biggest frustration in practical terms was trying to work with the Department of Work and Pensions (DWP) to obtain his benefits.

[The Department for Work and Pensions has] made our life a total misery

“Wankers, total wankers,” Hughes says of the DWP. “They’ve made our life a total misery. The hardest part about it was the endless form filling. You’ve got 20 pages and 19 pages are all the same. They don’t save the information, so Jane had to sit for hours, filling in these forms, send them all away, and three days later they’d say: ‘sorry you’re not entitled to that, we shouldn’t have sent you that form’. That’s soul destroying.”

Open conversation

The addition of financial stress makes it even more difficult for patients to advocate for better care. It takes time and energy for the dying to understand the variety of options available. Someone who knows this first hand is Hannah Merriman.

Merriman is a death doula and one of the founders of the Pushing Up Daisies festival in Todmorden, West Yorkshire. The festival, which has included a variety of talks, workshops, performances, and a death café, was designed to encourage a more open conversation around death.

“Doula is a Greek word for companion, and that’s all we do,” Merriman explains. “So the range is quite big, from what we might call smells and bells, the spiritual element, through to, let’s sit down together and go through this 25-page document on writing your power of attorney.”

It’s very confusing. One person, he was dying of cancer and there’s 14 different types of nurse that you have to know

Part of a doula’s role, she explains, can be to guide terminally people through the complexities of end of life care.

“It might be a two-month process of taking people to their appointments, translating, advocacy, being on the site,” Merriman says.

“It’s very confusing. One person, he was dying of cancer and there’s 14 different types of nurse that you have to know. The system is creaking, so a lot of the work could be just translating for a person what the hell’s going on.”

Hughes agrees.

“If I hadn’t had such a great GP I would’ve been lost,” he tells me. “There are thousands of people out there who are being left to navigate the system on their own. And they have enough on their plate to deal with.”

Cultural and systemic shortcomings

In part of its report on patient choice and the NHS, Marie Curie notes that hospitals often don’t work well with community services to arrange home care. It’s difficult to see how profoundly ill people can fight to overcome those gaps in care. Merriman shakes her head when I ask if the medical system helps people have the death they want.

“I don’t think it does really,” she says. “I think it tries to. But I think until people have the confidence to really ask for what they want and the confidence that they can do it themselves, it won’t change. The evidence would suggest that if doctors and nurses and district nurses are not having those conversations. And if the culture at large isn’t, then the status quo is, you go in, you take up a bed, and you die where you don’t want to.”

rose

For her, we fail the dying through a combination of cultural and systemic shortcomings. In the end, there’s no single reason why so few of us have the death we want.

Instead, there is an ugly symbiosis where not talking about death means that systemic weaknesses are allowed endure. In turn, the stress of trying to understand a complex system means that patients have less time and energy to speak about their experiences.

Hannah’s solution is to encourage people to see death just another part of life.

I really think that for people to die better they need to know what they want

“I honestly think that [death] needs to come in out from the cold,” she says.

“It needs to be something that people talk about from the beginning of life so it’s not a huge dark scary corner of the house, it’s not the attic that we never go into. I really think that for people to die better they need to know what they want. And for them to know what they want, they need to have thought about it. And for people to think about it they need to feel free to talk about it.”

Merriman is optimistic that our society’s conversation around death is changing for the better. The success of events like Pushing Up Daisies, she says, shows how hungry people are to encounter mortality in a constructive way.

Mark Hughes
Mark wants his ashes scattered on his garden 📸 Mark Hughes

Dr. Halley, however, is more circumspect.

“I think there are some sectors of society who are very mobilised and thoughtful about death and dying,” she tells me, “but the vast majority probably still don’t really want to discuss it unless they have to. I work in a speciality so I know when I bring it up in any kind of social situation, people kind of move away and feel uncomfortable.”

What they both agree on is that and there is no single representative death.

“Even if you’re holding somebody’s hand, it is your death,” Merriman says.

The lesson that seems to come from working so closely with death is that dying is unique, a consequence of who a person is and they life they’ve lived. And while the system can make space for more people to choose the right death, the process of dying comfortably is always individual

What’s your idea of a good death? I ask Hughes.

“High as a kite,” he laughs.

A good death, Hughes tells me, is a death without pain. He’d love to have his dog Daisy there, and no vicars afterwards because they’re creepy.

For the present, he’s devoting his time to volunteering with Marie Curie and spreading the word about life with cancer. There’s no need to worry, he tells me, about what will come next.

“When I’m cremated, I’m going to have my ashes spread in the garden because I love my garden. And bone meal,” he smiles, “it’s what goes on your roses.”

Listening to him talk about his garden, his dog Daisy, and his wife Jane, it’s easy to believe that Hughes will have his good death.

For the rest of us though, the end is still much less certain.

29th January 2018