See all Science Weekly transcripts on Applepodcasts

This is The Guardian.

Death. It's a topic most of us prefer to keep away from, except that is if you work in palliative care. For the doctors and nurses who look after us when we're dying, death is an everyday occurrence. They comfort their patients navigating sorrow, fear and pain, but also help them to find love, beauty and joy in the time they have left. 1 NHS palliative care doctor who's written about some of these heartbreaking and profound experiences is Rachel Clark.

Her books have shone a light on what dying can teach us about living. More recently, just what it was like to work inside the NHS during the Covid pandemic.

There are more people being treated for Covid in hospitals throughout the UK than at any point in the pandemic.

Now she's once again facing up to tragedy, supporting those trying to provide palliative care in Ukraine.

This hospital unit in Kiev used to treat stroke victims. Its purpose expanded when war broke out.

So today I'm speaking to Rachel about what dying can teach the living, what we can learn from the Covid pandemic and the anguish and defiance of providing a dignified death in the midst of war. I'm the Guardian Science editor Ian Sample and this is Science Weekly. Rachel Clark, you're a palliative care doctor and author and your job, I guess in some sense, is to ensure people die in the best way possible, if I can put it that way. I mean, what does that mean to you? What does a good death look like?

Well, I think in a way, Ian, it's a controversial concept, a good death. It sounds as though somehow with the cloak of palliative care and the word palliare is the Latin meaning to cloak, you can kind of disguise the dying process to such an extent that it's good in inverted commas. And I believe very strongly that there is an inevitability of suffering around the fact that we are all 1 day going to die. That entails an enormous amount of loss. But Aside from that, there's an unnecessary aspect by which I mean symptoms, pain, breathlessness, and so on.

And they can all, in theory, be alleviated to an incredibly successful extent. So, palliative care is about minimizing the suffering of every kind that goes hand in hand with us dying. And crucially, It's about enabling a patient to live as fully and richly as they possibly can on their own terms until the end of their life. And it may be as simple as stopping my pain, doctor, or it may be helping me live until the 1st of June so that I can stand there next to my daughter and walk her down the aisle before I die. Or it may be, you know what, I want to go to Ibiza with my mates and I want to lie by the pool and smile while I watch them all getting paralytically drunk and falling in and splashing around.

That's all I want to do and these are real examples I've just given you. It's what matters to you. My job is to help them live the life that remains to them as beautifully as is humanly possible.

Do patients ever want to know what dying will be like?

I think that's very often 1 of the least voiced concerns that patients have. And to try and walk that elephant into the center of the room, I will often, when meeting a patient for the first time, ask a very simple but powerful question, which is, can you tell me the thing that you are most afraid of as you confront this, for example, terminal diagnosis? And almost without fail, a patient will tell me, I'm not afraid of being dead, but I'm terrified of what it's going to feel like. I'm terrified of pain, of suffering, of loss of dignity. And that's an opportunity to start to explore openly that fear with a patient.

And I will often say, would you like me to talk to you about what that process is likely to be for you, what it might feel like? And almost always a patient will say yes. And typically that process is not unbearably racked with suffering. We are really good at pain relief, at helping patients with breathlessness, delirium, and usually towards the end of life, a very gentle process of the various body organs shutting down begins to take place. So the kidneys, the liver, the heart all begin to function less effectively.

The common end point of that shutting down process is very often a dulling of awareness, a dulling of the senses and so the patient will gradually become sleepier and sleepier. They may be snoozing in the afternoon, then they're snoozing most of the time. And at some stage, as the body shuts down, they slip into unconsciousness and that becomes deeper and deeper until finally the end point is the heart is the last organ to stop and it simply stops beating. And when patients know that it can be very very reassuring for them.

Has working with people who are soon to die taught you anything about life, do you think? MS.

BELLAMY I want to say it's taught me everything about living. And I don't think that's an exaggeration. First and foremost, it's given me this intensely colorful, vivid sense of the gorgeous, precious ephemerality of our lives. We are so incredibly lucky to have every second that we live in this beautiful, spectacular world around us. When I work with a patient who is 18, 19 years old, you know, they're on the cusp of adulthood and they're not even getting the chance to cross that threshold.

I think about the things that sometimes bother me, you know, my wrinkles, the grey roots of my hair, the fact that I'll never fit into a size 8 pair of jeans again. And I kind of laugh in the face of all of that and think all of that is evidence of how spectacularly lucky you are. You have had the bliss of living in this world for 50 years. When I look at people in my job who are often confronting the worst fears that we might all have, being told you have disease X and we cannot cure it, it is going to claim your life. I am lucky enough to see the absolute best of human nature.

They confront what they face with this astonishing array of human emotions, generosity of spirit and kind of grace and dignity and it just makes me feel our species infuriating though it may be is also miraculous. Miraculous.

You wrote a book, of course, breathtaking, about your experiences in the COVID pandemic. I'm wondering how you remember that time. I mean, I guess specifically, how did that crisis hit palliative care?

I realised, as many of us did, in those first awful weeks when the pandemic unfolded, and we could see in particular in Northern Italy what was coming for us a few weeks down the line, that the majority of people dying from COVID were likely to be elderly, frail and probably never patients who would be able to withstand ventilation in ITU. That's a very aggressive treatment. You have to be very physically robust to cope with it. But nothing prepared me for the first week of seeing those patients. I remember that morning seeing 4 or 5 patients, all of whom were in their 80s, they were all male, and they were all dying in exactly the same way, terribly frightened, terribly rapidly, desperately fighting for air.

We were able to give simple medications to cope with that fear. But 1 after the other, they died in the same way. And there was something so shocking about almost the conveyor belt nature of that experience, which then continued as the weeks and months went by of the pandemic. And on that first morning, I remember looking at these patients and realizing something really traumatic, which was that everybody who was coming into hospital dying from COVID, from the moment they arrived, they were destined never to see another human face again. Everybody was barricaded behind PPE and it made me determined to try and communicate humanity through other forms.

You can still hold a hand and squeeze it and the warmth of your flesh manages to go through your glove. It sometimes felt like death in a warehouse almost, and you had to fight tooth and nail to keep that environment humane.

You've described this situation in hospitals which pretty much all of us obviously saw from the outside and you're on the inside of a lot of people dying often quickly with doctors in full PPE and the patients not being able to be with their family and friends. And when you were experiencing that, did it change your view at all on palliative care? Did you learn anything sort of new about what palliative care should be in those years?

Strangely, for me, no. I already knew and was a fierce proponent of the idea that sometimes the most important thing at the bedside has nothing to do with huge doses of morphine or another drug, it is your simple human presence. So there are occasions when a patient can be almost demented with distress and anguish. For example, if they have young children and they know that they're dying, and actually no amount of a drug can alleviate that, but sometimes enfolding that person in your arms and holding them, not flinching away from their distress is the 1 thing more than anything, that can help them get through that. And I already knew that as a palliative care doctor, but I do believe that many non-palliative care teams in the hospital perhaps didn't understand the power of a human relationship in medicine.

And I think everybody realized that during COVID, we had to, and I think that has had an enduring effect. I think of my A&E department now, and we, the palliative care team, have an incredibly close relationship now with our A&E department and sometimes a patient will be rushed in by ambulance and immediately someone in resus may get on the phone to our team and say we're doing everything we can to save this patient but we're not certain we're going to, could you come and give us a hand and so from a very early stage the 2 teams will be working together and that's new, that didn't happen pre-Covid. Didn't happen pre-COVID.

I think you'd be forgiven for saying, Rachel, that, you know, look, 1 crisis like COVID is enough. But last year, you went to this other very different frontline. You went to Ukraine with the neurosurgeon and fellow author, Henry Marsh. How did that all come about?

Henry and I are friends and he has been going backwards and forwards to Ukraine to do neurosurgery for decades. When the war began, like everybody, we were desperate to help. But an opportunity arose at the end of last year because Lviv, which is the cultural capital of Ukraine, it's a city on the west border, they held a book festival almost in deliberate willful defiance of the war. They said, we are not going to let Putin stop us having a book festival. We're going to go right ahead with it.

Henry and I were invited to attend and we both realized that we had an opportunity to do some teaching and training in Ukraine. And so first of all, we visited a hospice just outside Lviv and then traveled to Kiev. As the night train we were on arrived into Kiev station, there was a massive missile attack on the city. As we stepped off the train, missiles were literally landing and we were all kind of herded into a bomb shelter beneath the station and the closest missile was so close, you didn't just hear it land, you sort of felt the reverberation in your chest and windows were blown out. But we had this incredible experience, despite that, of meeting local teams, seeing the work that local palliative care doctors and hospices were trying to achieve despite conditions of war.

And it was very, very humbling and it made me want to do more. So now we have set up a charity called Hospice Ukraine to raise money to try and support everybody attempting to deliver palliative care.

I just want to go back to when you were talking about the missile strikes in Kiev as you arrived there. I mean, you're essentially around death every day in your job. I'm wondering what it's like for you then to find yourself in a risky situation where potentially your own life is in danger.

The absolute worst moment of that experience for me was not...we spent most of the day underground in a bomb shelter, But there was 1 brief interlude where we traveled above ground to another. And that interlude coincided with the BBC Radio 4 Today program. Calling my mobile, I think because this was all suddenly across social media to say, could you do an interview? And I said, well, I can actually, because we're very quickly traveling above ground. So everybody else rushed in underground into the new bomb shelter.

And I asked the local fixer we were with, do you think it's okay if I just do this interview for 2 minutes and then join everybody? And he said, yeah, sure. So I did this interview and described what was happening and then turned around to get into the foyer of the hotel whose bunker everybody was staying in underground to discover that the doors were sealed. There was no way of getting inside it. There was no 1 to ask.

And I was standing by myself on a pavement in a city that was being bombed with sort of metaphorical tumbleweed rolling down the street. There wasn't a soul to be seen. And I stood there thinking, I have no idea what to do. I am really worried I'm going to now die and no 1 will even know where I am in Kiev. And I remember thinking how on earth have I got myself into such a dangerous, ridiculous situation?

I'm an idiot. I'm a fool. What am I doing here? I'm going to die because I'm a fool." All I thought in that moment, apart from a bit of self-flagellation, was, my children, I cannot never see them again. I wasn't frightened of dying myself, but the idea that I would never, ever see my children again was crippling.

I remember feeling almost sick with that fear. And I suppose that is exactly what I see as a palliative care doctor. Patients don't care about themselves. And I had a little bit of that too. I just cared about my kids and my husband.

You managed to make contact with the people in the shelter who came up and got you in safely, but it's quite an experience and shows what people there have been up against for a long time now. So tell me about how the war has affected hospices in Ukraine.

Well even before the war began, palliative care was pretty basic in Ukraine. So the World Health Organization has worked out roughly how many hospice beds ideally a country should have per head of population and Ukraine has about a quarter of the recommended number. And then of course with war we have seen huge internal displacement of millions of civilians from the East where the conflict is taking place to the West. Cancer care and other forms of medical care have been completely disrupted and so the numbers of patients in desperate need of palliative care has gone through the roof. The other pressure is that the number of both civilian and military patients from the east where the war is taking place is huge and many of these casualties are being shipped westwards.

The hospice that we visited, Sambir Hospice just outside Lviv, just to give you 1 example of how tough it is to provide care, they have a kind of makeshift ambulance. And in that little ambulance, a team drives out into the Carpathian Mountains on sort of impossibly muddy or snowbound tracks and sometimes they'll get out on foot with a medical bag on their shoulder and they will literally slog through the snow to get to someone's house. And in that house you may find somebody, an 80 year old, who has a broken hip, who is going to die at home from a broken hip in pain. And there is no way to operate, there is no way to get her to a place of safety, so the palliative care team will be going out to give her pain relief and whatever support they can. So our charity is providing 2 groups of resources, so first and foremost simple kit and medicines that local teams are telling us they need.

The other is educational training so we have world-leading expertise in in palliative medicine in the UK and we are organizing online teaching and in fact I've already been teaching Ukrainian medical students online. There's now a worldwide diaspora of medical students who all left when the conflict began. I could be talking to students in London, Brazil, Canada, across the whole world so they can carry on with their medical studies.

Rachel, just finally, I mean, the people of Ukraine face this question every day of how to live when their lives are in danger. When you were there, what did you see of how they're answering that?

The thing that affected me most profoundly, Ian, was the realization that the war is a total event for the total population. I was told, oh, when you arrive in Lviv, it will feel like any European capital. And that couldn't have been further from the truth. Almost within a minute of speaking to anybody, any civilian and asking them about their life, they would start to cry. They would tell me about the trauma of living, yes, a thousand kilometers away from the front lines, but living knowing that Putin wants you and every single 1 of you, your entire country's population, culture, history erased from the face of the earth.

And the only way, it seemed to me, that people are managing to cope with this is through a sort of concerted defiance. So the doctor in charge of the hospice that we visited, Sambir Hospice, as soon as we walked up to her, she said, come here, I want to show you my garden. And she pointed to a sort of what looked to me like a little scrubby field that didn't have much in it, a few old bushes. And she said, this is our hospice garden. And when the war began, Zelensky said to us all, you have to grow fruit, you have to grow vegetables, you have to be self-sufficient because Putin is going to try and stop you eating.

And she said with this absolute pride, this is what we did. Every fruit that grows in Ukraine is in this garden and we call this our victory garden. And then she burst into tears, she started to cry. And I could see this combination of defiance, absolute determination, coupled with a desperate distress because life as she once knew it, life that's just like my life in Oxford or your life in London had been overturned and eradicated in the most profound sense.

Rachael, it's extraordinary stuff. Thank you so much and good luck.

Absolute pleasure. Thank you, Ian.

Thanks again to Rachael Clark. Her charity, set up with Henry Marsh, is Hospice Ukraine. We hope you enjoyed this episode. If you have any comments or want to send us your suggestions of what you'd like to hear us cover, get in touch at scienceweekly at theguardian.com. And that's it for today.

The producer was Madeline Finlay, the sound design was by Joel Cox and the executive producer was Ellie Bury. We'll be back on Thursday. See you then. This is The Guardian.