What hope means

Dr Rachel Clarke joined art.earth as our first Borrowed Time keynote back in June 2021. Rachel spoke with us about some of those she encountered whilst working in NHS hospitals throughout the worst phases of the pandemic, and how she arrived at a new understanding of hope during those terrible months. She also made an observation about how the ecological crisis affects us, which I won’t forget: that the only thing we can really do with ecological anxiety is to ‘feel more of it’. This edited transcript of Rachel’s talk is published in Borrowed Time: on death, dying and change, art.earth 2022, or you can watch the video recording with Q&A here.

MO: Welcome everyone. We’re delighted to be joined by Dr. Rachel Clarke, whose powerful, moving and critically important voice has become a crucial touchstone for many of us this past year as we try to make sense of a still unfolding crisis, one which – as Rachel has put it – is not about numbers but about human beings. Dr. Rachel Clark is an NHS palliative care doctor and writer who cares deeply about helping patients live the end of their lives as fully and richly as possible, and in the power of human stories to build empathy and inspire change. So welcome, Rachel, and thanks for joining us.

RC: Thanks so much, Mat, for that really generous introduction, and fascinating introduction as well, because for as long as I’ve worked in palliative medicine, in particular, I’ve been struck by a great many parallels between something of the anxiety and hopelessness it’s easy to feel on a kind of macro scale when we confront the climate crisis that we all are living through at the moment, and my specialty at work day-to-day when individuals, ordinary men and women, are facing the fact that they’re entering a palliative phase of their life, their time is limited – and all of the fear that goes hand-in-hand with that. I suppose one of the things which is absolutely integral to being a palliative care doctor is trying to find a way, a narrative almost, a sense of a way of making meaning of the time you have left, that makes you feel as though it’s precious and valuable, and that you can cherish living it, even though you know it’s limited. And that’s very hard to do. So too is the idea of hope –– real hope, not wishful thinking or blind optimism –– but proper hope, that’s grounded. 

In fact, accepting the way the world is, not the way we want it to be, is an incredibly important, valuable way of living through stressful times. And hope is, in a way, what I would like to reflect on with you. Today I’m going to speak for probably about half an hour, so that there’s plenty of time for questions and discussion afterwards.

I’ve been a palliative care doctor for nearly five years now. And for the last 18 months of that time, I’ve been obviously working through a pandemic. And I thought I’d share with you today some quite personal reflections on what the clinical experience of being a palliative care doctor through a pandemic has taught me. First of all, about what matters in medicine, but in a way, much more fundamentally, about what matters in life in general, because I feel as though I’ve come out of the last 18 months having learnt maybe, in pretty hard and brutal ways, some really important facts about the way we live. 

If you think back to the very early days of the pandemic, 18 months ago, when it was really starting to unfold here in the UK, journalists used, I think, understandably quite dramatic language to describe it. One of those words was ‘apocalyptic’. And to be honest, from my perspective on the frontline of the NHS, that seemed a very appropriate, apt way of describing what was unfolding. We were in this sort of incredibly chaotic and traumatic race against time to sort of reconfigure the entire health service so we could help people, patients who had COVID, and it felt very desperate and urgent. But I think it’s interesting that the original meaning, that the Greek etymology behind that word apocalypse, is that the meaning stems not around calamity, but revelation. So an apocalypse in biblical times is an event that reveals something profound and true, that would otherwise remain hidden. And when I was sitting up late last night, thinking about this talk, I realised that for me the most important lessons, the truths that I have discovered in the last 18 months, interestingly don’t centre on loss, death and dying, even though that’s been a large part of my experience. They’ve been about hope, and in particular, tenacity. So I have come out of the last 18 months more hopeful than I went in.

And that is never something I would have predicted. I thought it might be interesting to explain why. So to start, I’m just going to read you a couple of lines of poetry. Now this is a poem that my daughter wrote last summer. We’d come out of the first wave, and she was absolutely hating homeschooling, missing her friends terribly. And for her English homework Abby, who was nine then, was asked to write a poem about lockdown. I’ll just read you this little bit of it. She wrote:

We’re racing around squealing like pig’s feet, stamping the ground and snapping twigs. 

Now we laugh and have a lunch. We love our delicious school lunch. 

I’m tucked up cosy in my bed, dreaming of what I could do instead. 

And I stare at the silver moon above and cry for all the things I love. 

I share that with you just because when she wrote this poem, apart from being very proud of her rhyming couplets, I was incredibly moved by what she wrote. I couldn’t believe that she was missing school meals, and I knew that what she meant really was she was missing everything about school, the camaraderie and her friends and teachers and the excitement of being at school. And I also realised, and it kind of drew me up short with a jolt, that I really had no idea what it was like for my family, my husband and two children to be locked down, and their world of homeschooling and boredom and limits and frustration was so alien to me because I wasn’t locked down, I was a million miles away inhabiting this world, behind the closed doors of the hospital that was completely immersive. 

And that realisation was a bit of a turning point for me, because it made me realise that the world I inhabited was every bit as foreign and alien to my family, and to anyone else who wasn’t there inside the hospital. And it reminded me of that famous quote by Susan Sontag, where she writes about there being two countries, the country of the well and the country of the ill, and how we all have a passport for each of those countries. And some time or another, whether we like it or not, we will enter that world of the ill. 

But actually no one [without Covid] was, last year, unless you were actually working, because hospitals were closed to almost everyone in the public. So I started to think at that time very seriously about writing. I have always written for myself, I was doing a lot of writing during the first wave last year, really, for not much more than therapy, in a sense, because it was so traumatic. And always if I’m stressed I don’t sleep, and so I would just spend night after night sitting in the kitchen, bashing away on my keyboard, so that I didn’t wake my husband up. And it was just a way of trying to deal with what we were seeing every day. But at this time, when Abby wrote her poem, it was probably May, June time. That was when I really seriously started thinking about trying to turn what I had written and what I was still writing into a book, because I really wanted to try to take people into this alien world and understand what it was like … If you think back to then, we were all starting to get pretty fractious and pretty frustrated: we were all obeying the rules very fastidiously, politicians were misbehaving and there was a lot of resentment building. 

And I just felt really strongly at the time that inside the NHS, there was a story that I wanted to tell. And I wanted to tell it because it was true, and it was real. And this was a story about what patients and their families and members of staff were going through, how much tenacity and strength and resilience they were finding to deal with these horrendous circumstances. And I felt as though my testimony might be very flawed, it might be subjective, and personal. And I could never pretend it was anything historical, but there was surely something of value in trying to document all of the wrongness of that time. It seemed to me to have a purpose, particularly when so much was being written and said about what was happening inside hospitals, perhaps by politicians or journalists who weren’t there inside. And I suppose I had a particular story I wanted to try and articulate, and it was this idea that despite everything, literally every day that I would go into work I was blown away by the sheer grit, strength and compassion of pretty much everybody around me. It was an extraordinary thing to witness. So if you go back now 18 months and think back to that first wave, it’s almost hard remembering how frightening it was because then we had no vaccines, no treatments at all. It was a completely new disease. 

COVID had already overwhelmed China and Italy, and here it was now overwhelming us –– London in particular – in the first wave. It was absolutely terrifying how quickly hospitals were being overwhelmed. I asked straightaway, if I could move from my hospice to the hospital. I wanted to be on the wards, working with COVID patients. I wanted to be using my skills where they were most helpful. And I wasn’t even slightly unusual, in that pretty much everyone I knew felt the same: we were trained, and we just wanted to do what we could to help. And so life became very different very, very quickly. We all had our PPE training, learned how to put on our protective equipment, and my routine became: leave the house early, sometimes even before the family were up, work in the hospital all day, come home. And literally, I would have already taken my dirty scrubs off at work and put on new clothes, but I would get home, I would wipe down and sanitise the front door, handle my car, keys, my phone, and strip off my clothes and straightaway put them in the washing machine. With my scrubs, I wouldn’t let the children come near me, they weren’t allowed to touch me. I’d go straight upstairs and shower, wash myself from top to toe to get rid of the COVID. And that was a big, big, big change in life. And inside the hospital, it was really tough. I wasn’t in intensive care. So I think in a way, a lot of the narrative last year was all about ventilators and saving people if we could put them in intensive care. But of course, the vast majority of people who succumbed to this horrible virus were never in intensive care, they were never fit or strong enough to even be considered for a ventilator. 

… So I was seeing many, many hundreds of patients with COVID, on the wards. And I thought I would share with you three very brief vignettes that, to my mind encapsulate a lot of what that experience was like. And the first of which, I think, I sort of imagine now as a painting, as a – I don’t know – as an Edward Hopper, or something. But it was this scene that I saw a few times as I arrived in the hospital, before I understood what it meant. And then suddenly, when I worked it out, I literally stopped in my tracks. And this was the scene of the empty car park – the carpark outside the hospital, that was always almost entirely empty.

Because of course, we had no visitors in the hospital, but there would always be a small number of cars, a handful. And they would always be pointing right at the front entrance of the hospital, and they always had someone inside, maybe three or four or five of these cars. And their inhabitants would just be sitting there staring at the hospital, and I suddenly realised what this meant: these were people who wanted to be inside, who desperately wanted to be with their loved ones, who were on the other side of those closed hospital doors, and they couldn’t be there. But their physical longing and yearning to be close and be with the people they loved was so profound that it propelled them to be right there sitting, just staring, as close as they could be. 

And I just found that, of all the images, one of the most poignant, because of what it seemed to say about how desperately we want to be close to each other when we’re frightened and sick. 

Now, if you come to hospital, and if you survive your admission, then from the moment you arrive you are destined never to see a human face again. Because everybody you encounter, every member of staff and even your relatives, your family, your loved ones, if they come to visit, they’re all wearing a mask. So you don’t see a human face, you don’t see someone smiling, you just see eyes above masks…We were all so traumatised by the barriers that COVID put up. Of course, they were necessary –– we had to have infection control measures to stop other people being infected, including ourselves. But they really did seem to attack something very, very profound about our humanity as healthcare providers, simply as human beings, which is that when someone is suffering, particularly if someone is dying, every molecule of your being is screaming to provide them with care and comfort and kindness. And the last thing you want at a patient’s bedside, particularly if it is a death bed, is those awful barriers. 

There was one occasion when a nurse colleague of mine, who I’ll call Nic, did something really extraordinary. We had a patient who was very distressed, and knew they were dying. And very, very often, it’s quite incredible how the most powerful thing at a patient’s bedside is not morphine, or any other strong, powerful drug. It really is a human presence. So sometimes the most frightening and painful and distressing thing about approaching the end of life is not physical symptoms. It’s just the psychology, the enormity of what’s happening to you. And the flip side of that is that if someone is there, supporting you, and making sure you don’t feel alone, it can be enormously powerful. So we were in a situation where a patient was very distressed, and we had given various medications, which were not really touching the distress. And there was a moment when Nic intuited that what she needed to do was not possible officially, according to the rules –– we were meant to have no physical contact with patients unless strictly necessary. But she intuited in that moment, that actually what was necessary, what this patient needed more than anything, was physical, tactile compassion. And the patient had COVID. 

Regardless of the risks to herself, she took this terribly distressed woman in her arms and cradled her as a mother might cradle a child. She held her close, and her face sort of fell on to Nic’s chest, and she cradled her, and the distress evaporated. It just melted away. Because what that patient, that human being, needed in that moment was something that only physical holding and cuddling and cherishing could provide. Afterwards Nic went away, stripped, showered, washed herself down, put on new PPE. But she had risked her life to do that, and I’m pleased to say did not catch COVID. But she did that because she had to, there was something in her that drove that. 

There is now among staff in the NHS, and in care homes as well – just a huge amount of anxiety, depression, PTSD, all of that is through the roof. I think I found in the first wave, I was already trained in a sense to know that you can’t suppress it. In palliative care we were much better than many branches of medicine, in recognising that actually we need to support each other, because there are often experiences that are very, very sad. And so we do support each other. And I think there’s a tendency, especially among doctors, to put on that sort of stiff upper lip and pretend you’re fine. I used to routinely. I would spend a day at work, and on the way home, I’d be driving home, and I would literally pull over by the side of the road and cry. And then sort of get myself together and come home, because I couldn’t bring what I’d seen into my husband’s life, there was nothing to be gained from that. So I had to sort of let it out somehow. And I think I found in December – the hardest bit for many people was that awful second wave – and December, January, when so many of the deaths happened. And that kind of anguish of knowing that it was going to happen again, seeing it unfolding again before our eyes, and being powerless to stop it.

I share this simply to try and give a flavour of what was hardest. I think for all of us inside the hospital, it was this. It was the sometimes seemingly insurmountable barriers between us and patients, the terrible distress around family members not being able to visit routinely, but also the ferocity, and our desire to somehow circumvent them and somehow keep on providing good compassionate care. There were a thousand ways in which people tried to do that. We would connect families through smartphones, tablets, screens. We would sit there and play favourite pieces of music that family members would send in, or tell us to play with their loved ones. We would sometimes read poems or letters at the bedside, that somebody had written for a patient in hospital. And in every conceivable way, we tried to make up this compassion gap. And I think what I learned from all of that, and by all of that, I suppose I would say, now, I’m a palliative care doctor who has experienced enough death and dying in one year to probably last an entire lifetime.

… This was intensive care of the human kind. We were striving intensively to deliver humanity every day, as much as possible, at patients’ bedsides. We were not doing that because we were special in any way at all. We were not heroes, we were not angels. We were none of those things. We were just ordinary, flawed, frail, hopeless, scared, tired human beings, just like anyone else. 

And that is what gives me grounds for renewed hope. It was the fact that you could be knackered and weak and struggling, but would still put everything you had into providing humane and tender care, that just gave me such tenacious grounds for hope. 

… I remember in March last year [2020], when we went into lockdown, and suddenly every village, every street, every little local community was setting up instantaneous little grassroots collectives of people that were trying their hardest to help their most vulnerable neighbours. So, you know, streets had a Whatsapp group to organise shopping or collecting prescriptions and medicines for people who were shielding and isolating at home. I remember early on asking my sister if she had a pair of crocs I could borrow, because I needed some shoes like that. And Amy, she messaged her little COVID Street Whatsapp group, and pretty much within half an hour 10 pairs of crocs had been dropped off at her doorstep. And I was able to give them to lots of people who are now in A&E. And it was just one tiny example of this astonishing outpouring of generosity and desire to help each other that had been unleashed by circumstances that were unprecedented and dreadful, and required us all to step up. And that’s what the population did, they stepped up.

I think [one of the] unintended consequences of NHS England having a really very draconian media policy throughout the pandemic has been the creation of a real barrier between what patients and staff and families who have been inside the NHS have experienced, versus the vast majority of people outside. And of course, that barrier has also fuelled a lot of disinformation and toxicity on social media. So say, for instance, before Christmas, sort of November December time, there was a spate of individuals who would go inside hospitals late at night and film an empty outpatient department and then post this footage online on Facebook or Twitter, saying: Look, these hospitals are empty. It’s all a lie. It’s a scam. COVID isn’t real. And I used to be very vocal in response to this, along with many other NHS members of staff, and we would just receive the most incredible abuse for standing up, saying this isn’t true, this is disinformation … It’s real. It’s deadly. People are dying now. Please take this seriously. I would be called Satan, Hitler… you name it, I’ve been called far worse than those things on social media. Incredible. You’d get rape threats, death threats, amazing stuff. And I think it is easy to hate if you are frightened, and if you are frustrated, and if there is a gulf between you and what’s actually happening inside an institution. So I think that NHS England made a big mistake in trying to control the media narrative in a very draconian way. I imagine they came under considerable pressure from above – from Number 10 – to do that. But I think the consequence of it was they inadvertently fuelled people who had an agenda of disinformation, and wanted the public to become mistrustful and doubtful and sceptical of scientists and doctors. And the best way to break down those barriers is, of course, to hear from real human beings, to hear real human testimony. There’s nothing more powerful than a human story. 

And so [there was] some really wonderful documentary. The 23rd of March this year was the one-year anniversary of the first day of lockdown. I think it was a 90 minute documentary that was called something like The Day the World Stopped Still, The Day the Country Stops, or something like that. It’ll be very easy to find on catch up…and the BBC that week, as well, ran a series which was about the impact of COVID all over the world, including the UK, and it was outstandingly good. And again I can’t [remember], all their names all merge into one. But if you Google for that week, you’ll find it. And the other thing, if anybody is in London, that I would really recommend is paying a visit to the COVID Memorial Wall on the South Bank. I really believe it’s one of the most extraordinary public art installations that I’ve ever seen. And it was created by bereaved families, families who’ve been hurt by COVID. And each of them painted a red heart on the Albert Embankment to symbolise the person they had lost. One heart was painted for every single life that’s been lost –– over 150,000 people. It’s a very provocative piece of art, and it sits right opposite Downing Street. So it’s a statement, it’s a sort of howl of anguish, almost.

Nick Cave has said that there is a vastness to grief that overwhelms our miniscule selves. We are tiny trembling clusters of atoms subsumed within grief’s awesome presence. And I think that somehow encapsulates the pandemic, for me. I think we have all been collectively grieving the loss of something, and nevertheless, have demonstrated incredible spontaneous philanthropy, kindness to each other, to society’s most vulnerable members whenever we can. 

… I have been taught by this coronavirus what love really means, and how much of it there is in society. COVID showed me that we do love and care about our fellow citizens, that there is such a thing as society, and that most people most of the time try their hardest to be good. And it seems to me that that revelation not only is true, but it means more and lasts more than anything else. And that is a truth that cannot be stolen by COVID, by a government, by online hate or any of these dark and daunting forces that we sometimes might feel hopeless and impotent in the face of. I’ve seen something remarkable over the last 18 months. I think we all have. And that’s what I wanted to share with you today.

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