Is there a better way to die?

When I first saw Peter Hallgarten, he was lying in a hospital bed, an oxygen mask over his face. I took to him immediately. Afterwards, reviewing the series in which he had appeared – the BBC’s Hospital: Coronavirus Special – I singled him out for special attention, noting his wry, unsentimental manner and his hair, which stood up in pleasing spikes about his head. A chemist turned inventor of liqueurs, Hallgarten believed he had caught the virus at a dinner party and something about the way that he said this – he did not sound particularly regretful – made me think that he must be great fun; I had the feeling that he loved his life and was not ready to give it up quite yet.

Most of all, though, I was struck by his serenity. He could not breathe, there was every possibility that he might soon die – and alone, too – and yet there was a lightness about him; a peacefulness that made you worry less for him than for other patients in the film, even as you rooted for him. “One chews through life,” he said. “So many good things. We’ve had a good run.” Where did it come from, this composure? Did it have anything to do with the fact that, as he had explained, those taking care of him knew that should things deteriorate, he did not want to be resuscitated? With the knowledge that, in a worst-case scenario, he would be allowed to take his leave of this world quickly, quietly, and with dignity? For days afterwards, I wondered about this. I did not want to leave him at the doors of the Royal Free hospital in London, through which we saw him miraculously emerge after 12 long days, into the safekeeping of his daughter, Lisa. I wanted to examine his calm, as if under a microscope.

And so it is that, a month later, Hallgarten once again appears on screen before me, this time via Zoom. Is he feeling better? “I’m not as strong as I used to be,” he says. “But I’m getting there.” Is it unnerving to be one of those who made it? He laughs. “I feel pretty good about it, actually. I was lucky. I had doctors who, not withstanding my age [he is 88], decided to keep me on the recovery programme. They recognised early on that I wasn’t going to be a damn nuisance, because I had a DNR [do not resuscitate order] and the papers.” Did he, once he’d been admitted to hospital, feel certain about his DNR? “Absolutely. I don’t know if people realise what ventilation involves. It’s not just watching hospital dramas, people jumping up and down, the patient recovering. From the beginning, we saw how awful it was. And I would probably have had no quality of life afterwards, so what would have been the point? You have to think about your family and the fact they would be happier if you died calmly and comfortably.” Did he think he might die? “Yes, I did. The person who did my tests in A&E said something that made me realise I was in a bad way. I got the message. The only trouble was, I hadn’t said goodbye to anyone.”

Hallgarten and his wife, Elaine, celebrate 60 years of marriage this month. He and she drew up their end-of-life wishes together, 10 years ago. “I’m a member of the patient participation group at my GP surgery,” he tells me. “The paperwork came to me that way. It was explained that it would be registered at the surgery and that this would mean no mistakes could be made in the future. We thought about it. We agreed that prolonged life without quality of life, for us, has no purpose. It might be different for the young, but when you get to our stage, you know when enough is enough. We’ve watched friends have their lives prolonged. One had no paperwork. Every time she had an infection, they carted her off to hospital. She hated it. We could see that it made sense not to go through that agony.”

I can see this, too. But what I want to know is if he thinks that having his wishes there in black and white made a difference once he was in hospital. Did this account for his preternatural calm? “It was a decision I was pleased I’d made” is all he will say. But from behind his computer, I now hear another voice. “It sounds awful,” says Elaine, who has been listening in. “God forbid he was going to die. But it meant that I knew either he would be OK or he wouldn’t be.” What she means, I think, is that there would be no in-between state, the days and weeks of tubes and machines; a limbo that would come with no guarantee that the person she knew and loved would ever be returned to her.

Death used to be all around. As a teenager, I remember my granny, who was one of seven, telling me of her sister, Molly, who’d died as a child. What was amazing about this was that she’d never thought to mention it to us before; when I repeated the story to my mother (her daughter) later, she refused to believe me at first. But in my grandmother’s time, death was a more quotidian thing, if no less a painful one. It happened in most houses. On my dressing table are some silver-backed hair brushes, engraved with the letter N, for Nan, the sister my granny would later nurse as she lay dying from cancer as a young woman. In my childhood, people were still odd about cancer. They hated even to say the word, which must have been torture for those suffering from it. (In Tolstoy’s story, The Death of Ivan Ilyich, the lie that he is sick, rather than dying, is Ivan’s chief torment: a farce, played supposedly for his benefit, which makes the prospect of his death only the more lonely, for it leaves him without anyone he can talk to.) However, they were less squeamish about death itself. Dead bodies: surely everyone had seen one.

But then, quite quickly, things changed. It wasn’t only that such diseases were no longer necessarily a death sentence - death began to take place away from home, in hospitals. “Even many doctors don’t know what dying looks like and they haven’t for two generations,” says Dr Kathryn Mannix, a palliative care specialist whose best-selling book, With the End in Mind, magnificently corrects some of the common misconceptions around death and dying. “Death is not part of the plan for anybody in medicine. You go to medical school to learn how to stop people dying. What I mean is that doctors know what being on the edge of death when you shouldn’t be looks like, but not what a normal death looks like.” With this change – born of advances in medicine, but encouraged, too, by the TV dramas of which Peter Hallgarten spoke, in which crash teams perform miracles (most of us remain blissfully unaware that even when performed in a hospital, cardiopulmonary resuscitation, or CPR, is only successful in 20% of cases) – has, she believes, come a certain loss of acceptance. Some of us are perhaps in danger of believing that we can defer grief forever.

Or at least we were until the advent of Covid-19. Suddenly, death is all around once again. Everyone knows someone who has been touched. As a result, people are not only having intimations of their own mortality; more of them are thinking about how they want to die; of what they want to avoid in the way of intervention and what they would hope for, too, given the choice. Interest in advance directives, the documents often referred to as living wills, has grown dramatically during the pandemic. Compassion in Dying, one of the organisations that campaigns in this area, reports a 160% rise in the number of living wills completed via its website between 20 March and 20 April compared with the same period last year (such documents allow people to refuse life-prolonging treatment should they become unable to make or communicate their wishes), and a 226% increase in completed advance statements (which allow people to record anything else that’s important to them regarding their future care, including where they would ideally like to be). Calls to its nurse-led helpline are up 48%.

But this is starting from a low base. In the Netherlands, it is fairly unusual for a person not to have an end-of-life plan registered with their doctor. In the UK, on the other hand, only 4% of us do. Perhaps people don’t know how to go about writing one and perhaps, too, they imagine you need to involve a solicitor (you don’t: an advance directive, signed by a witness, is legally binding under the Mental Capacity Act 2005). A few may worry that such a document is giving doctors licence to write off a person (it is not: those procedures you rule out, up to and including resuscitation, do not preclude other forms of treatment). And the young, and even the middle aged, may believe this is something for later (it isn’t – in 2016, Lindsey Briggs won a court battle that allowed her finally to move her 43-year-old husband, Paul, from a hospital, where he was in a minimally conscious state and on a life support machine, into a hospice; he had previously made his feelings about patients in prolonged comas plain to his wife, but when he fell into one himself, he had no paperwork in place). Those who work in this area, however, believe that most of us simply find it too difficult to have the necessary conversations involved: to face up to the fact of our own death or of that of someone we love. We prefer to stick our fingers in our ears and get on with living.

Could this, though, be the time for change? In 2014, a YouGov poll found that 82% of people would want to be in control of any life-prolonging treatments should they lose their mental capacity. Research shows, moreover, that advance care planning results both in people receiving care that is more aligned with their wishes and in better communication between doctors and their patients and families; it has also been found to reduce, even to prevent, hospitalisation in the last year of a person’s life. The majority of doctors would certainly like it to be a turning point. “None of the patients that I saw had made their wishes apparent,” says Dr Anushka Aubeelack, an obstetric anaesthetist at Barking, Havering and Redbridge University Hospitals NHS Trust, who has spent the last three months helping to treat Covid patients in intensive care. Would it have made a difference if they had? “Oh, yes. We needed to let them know they had a high chance of dying in ICU. Having to be the first person to have the conversation [about what they want in terms of treatment] makes things, I imagine, so much more unpleasant for the patient, particularly when they are under the stress of being so unwell and perhaps experiencing a sense of panic.”

Some are optimistic that this could be a pivotal moment. “The public focus on dying is one of the good things to have come out of this awfulness,” says Mannix. “Even when the pandemic is over, people will still be talking about this because it really did happen.” But others are less certain. “With Covid, people are full of ideas about how the discourse around dying will change,” says Professor Sam Ahmedzai, a retired professor of palliative medicine with 30 years of specialist experience. “And I think at a macro, population level, it will. But at a more personal level, I still think we’ll see people struggling to face serious illnesses.” Lisa Hallgarten is also sceptical. The producer of the series in which her father appeared seemed to struggle to understand that she was happy with Peter’s decision; the assumption is that families always want doctors to intervene. “It would have been terrible for me to lose my dad,” she says. “But would the quality of my grief have been any different this year, than in five years? The last thing he would have wanted would be to spend the last years of his life debilitated. It’s unbelievable to me that so many people have never even had this conversation.”

Headlines about unlawful blanket DNR orders in care homes have also, she believes, “detracted from, not added to, the public understanding of DNR”. Such orders are signed by doctors, not patients, and though patients and their families must be consulted about them by law, there is concern that they may have been used inappropriately during the pandemic. In April, the government instructed the Care Quality Commission “urgently” to contact homes, telling them to tear up any agreements that would stop residents getting access to certain treatments, should they choose them. Many families had received letters from their GPs asking for consent to DNR orders for their relatives. There were also reports of residents being asked to sign agreements ahead of any infection. Important conversations, it was felt, were not being had.

What needs to happen next? Those who work in this area agree that an education campaign would be helpful, something with the same visibility that, say, the issue of organ donation once had. It would explain some of the confusing acronyms involved and send people to places where advice is available. A more standardised form would also be useful (at the moment, there are many different templates for advance directives in circulation, the most popular of which is ReSPECT, the process drawn up by the Resuscitation Council, now used by 150 hospital trusts). Some kind of national database, instantly accessible by all healthcare practitioners, from paramedics to A&E doctors, is also vital; at present, the system relies largely on GPs to pass on information (in London, Coordinate My Care, a website that helps patients draw up a care plan, can be accessed by healthcare professionals in an emergency, though I find its language confusing). But however important, these are all practical, technical things, and while they may give people a much-needed sense of agency, and perhaps make them feel less afraid of what lies ahead, in and of themselves they won’t necessarily change the way we talk about death and dying – or even induce us to talk about it at all. That’s the really hard part, the bit no one really knows how to tackle.

“We have medicalised dying,” says Mannix. “But we can’t just put this on medicine. I want a societal change. I want people to be able to think about what it is like to be a person who is sick enough to die. If society, in 20 years’ time, can think about these things, then we will have doctors and nurses going to train who come from that society, too.” In her book, Mannix describes the moment, early in her training, when she heard the consultant she was shadowing in a hospice explain to a cancer patient called Sabine, a woman who had admitted to being terrified of dying, precisely what would happen at the end. Slowly, carefully and without recourse to euphemism, the consultant spoke of tiredness; of the need of the dying to sleep more; of how she would finally slip into unconsciousness; of what would happen to her breathing; of the fact that she would feel no pain. His words were clear and detailed, but they had to do with natural physiological processes, not the brutalities – the drama – that those who have never seen someone die might imagine. The young Mannix was at first horrified by this speech. It seemed so harsh. But then she saw the effect on the patient. After he had fallen silent, Sabine raised her doctor’s hand to her mouth and kissed it. “Thank you,” she said. Mannix has never forgotten this and it has informed her practice ever since.

She believes that death needs to be “better narrated”, both for the dying and the future bereaved. People would be so much less distressed if they knew, for instance, that the sounds a dying person makes – the death rattle – do not mean they’re suffering (I wish I’d known this as I sat with my dying father). A particular cruelty of the pandemic has been that many people were not able to be with their loved ones at the end. But as a result, those same relatives may now have a new understanding, one that will perhaps help to change the culture around death. “We have a whole slew of bereaved families who weren’t at the deathbed,” she says. “These people don’t know what the real story was and they realise that this not knowing is terrible, that being at a deathbed isn’t a duty, but a gift.”

A gift. What does she mean by this? She smiles. “I don’t know. Doctors are scientists and there’s no evidence for this, no graphs. But perhaps I’m not really a proper doctor. Still, my sample is between 10,000 and 15,000 deathbeds; that’s how many I’ve supported. Doctors like me see families gathering. You’ve got the people around the bed, and the people who can’t be there, and everyone is in constant communication. People hand over to one another, in shifts, and as they do, they describe what they saw: when the person was last awake, what they did and said. The story is picked up again and again and this is the narrative that will be retold later. By telling others, we’re telling ourselves. Psychologically, we’re putting this momentous thing into our memory, where it’s safe; where it doesn’t generate the same level of emotional response that it does while it is new and raw. You are more likely to have a difficult bereavement if you weren’t there, because you haven’t got the story. What you end up imagining might be worse than the reality.” Like almost everything to do with death and dying, information helps.

What drew Mannix to palliative medicine? Around the end of life there is, she says, an “absolute genuineness” to people. “There’s no point in being anything other than who we are,” she tells me. “I was drawn to it because it felt like precious time and I was interested in helping people make the most of that. I am obliged to say that palliative care isn’t about dying. It just happens that our patients are at that stage in their lives. What I love about it is the satisfaction of enabling people who thought they would never feel OK again to recover a joy in living even though the time that’s left is short.”

This isn’t a piece about palliative medicine - it’s a piece about end-of-life wishes and the importance of making them. But the point is that all that she says applies to living wills, too. Perhaps the best way of facing up to the decisions involved in writing them is to think of them as directives for living rather than dying. How do you want things to be in those days or weeks? It isn’t only about pain or discomfort or debilitation, though these are all considerations. She hopes that in their notes people will consider other things, too: things to do with who they still are. “Do you prefer tea or coffee?” she says. “Do you want Radio 4 or music? Do you want to be beside a window, out of which you can see a tree?” Again, she smiles. This sounds utopian. But it is her conviction that, save for in the most dramatic of circumstances, even the smallest things are not only important, they should be possible, too. We can be given what we want. We just need to muster the courage to ask.