Based on an interview with Averil by Gillian Nineham, adapted by her daughter Elizabeth Rolph. The interview took place in January 2019 when she was 86 and at Albion Lodge care home, Hanley Swan, Worcestershire.
I decided I wanted to be a doctor when I was still at school so I trained at University College Hospital and then to be a GP. I also did a Diploma in Child Health and a Diploma in Obstetrics before I started in general practice. After a short time, it became clear that I was gifted in the psychiatric side of general practice. In Oxford at that time there was an opportunity for married women who’d stopped to have children to go back and retrain, so I started taking MRCPsych in Oxford under that scheme. Halfway through it, I was in my garden one day and something said ‘I want you to work with the dying’.
I’d never been called quite like that before and I’d no idea how I was to set about it so I carried on with my MRCPsych training. But Brian, my husband, was working in the Churchill Hospital in the radiotherapy department. He was a radiation physicist and he learned from Dr Alastair Laing, who was then one of the oncologists, that he planned to start a hospice in the grounds of the Churchill. So Brian told him that his wife was interested in being involved in a hospice and Alastair said ‘Well I hadn’t thought of using a psychiatrist, but if she’s interested, I might be’. So I talked to him. So then he went to see the professor of psychiatry - Professor Michael Gelder - who said ‘Well, if you like I’ll second her from my department to you for six months and we’ll see how it works out. And I stayed twelve years. So that was a very clear and interesting beginning.
This meant I was there from the very beginning at Sobell, before it started taking patients even, while we formed ourselves into a team. Robert Twycross was appointed as the consultant after this and I don’t think he had any choice but to be landed with a psychiatrist in his team when he’d never even met her. My sense was that he was uncomfortable with that and I appreciate his graciousness because it must be very disconcerting being appointed with someone underneath you who is quite different from you.
I was one of the first psychiatrists to work in a hospice. The very first one was Colin Murray Parkes at St Christopher’s and I got to know him a little bit. But Cicely Saunders (at St Christopher’s) didn’t like psychiatrists and she wouldn’t let him see anyone on the ward. She would only let him do bereavement work. And I asked him once, just out of interest, ‘What does a psychiatrist do about confused patients?’ He said ‘Psychiatrists have no role to play in the management of them.’ So I remembered that very much when I’d been working a few years and I wrote a paper on the management of confusion and it got into Hospital Medicine. So there was no precedent for me. I found my own way and I enjoyed doing that very much.
One thing I had to deal with was there was much less respect for psychiatrists then, and some suspicion, and I sensed that they were not very sure about having a psychiatrist in the team. I picked up that I wasn’t considered to be a proper doctor. Then one day when we were doing a ward round, there were three or four of us doctors, and we were discussing a very difficult case. No-one knew what it was, and I said, ‘I think it could be so-and-so’ and the others said ‘That’s a good idea. That’s right.’ And one of them said, ‘You’re not a psychiatrist. You’re a proper doctor!’
This is one of three little stories where something I did convinced people of the value of a psychiatrist. It’s quite fun doing that. Another was when I’d only been working at Sobell a short time and a phone call came from the oncology ward saying ‘We’ve got a woman here with a brain tumour and she has thrown a flowerpot at the sister. Please come and help.’
Well, I didn’t know the ward, or anyone there. I felt quite scared going into this situation. But anyway I found my way to the ward, and got to talk to the woman. The staff had managed to quieten her and I suggested a medication, and I went away. But that evening at home the phone rang. ‘Will you come into the ward please? Mrs So-and-so’s husband is furious that we allowed her to be seen by a psychiatrist. He’s absolutely indignant. He will not go home tonight until he has seen you to tell you so’. So I went in at night to see this gentleman. He said ‘She’s not mad, she’s got a brain tumour. She’s nothing to do with you. Psychiatrists are for mad people. They should have asked my permission.’ He went on until he began quieten down and said, ‘You see they’ve given her some new tablets and she’s already a bit better.’ So I left a long silence and then I said ‘I told them to give her those tablets’. And he flopped like a sandcastle hit by the sea. He was really taken aback by that. When he settled down a bit we had a sensible conversation about what psychiatrists are for, and he told me about his plans to care for her by buying a seaside cottage and caring for her himself. He was really quite a nice man, but he wasn’t nice when he was angry with me. So that’s a good story of the sort of feeling that I had to deal with sometimes, and I had to be more resilient than I knew I could be.
Here is another rather nice story. One of the GPs who was part of the staff had an elderly patient he was caring for at home. She was a wise old lady, she realised she was dying, and she talked it over with her family and she was very much at peace. But then, all of a sudden, there were people in her wardrobe and they were coming out to threaten her. She got admitted so I could see her. I got to talking with her - she was a very wise, lovely lady - and I noticed that she looked Jewish and I asked if she was, and she said yes. I asked her what sort of things happened to her. She told me how she was sort of shut away to protect her from arrest - just like Anne Frank. All through the war she was waiting, listening for people to come and take her. And this was terrible for her. I said to her ‘When the mind is trying to make sense of a nasty experience, it asks itself "When did I last think about that before?" Your mind is saying "I’m dying now. When did I last feel as if I was dying?" And she told me about her experience in a concentration camp. And I said, ‘Yes, that’s how it was before, but it’s not going to be like this now. This time you’re going to die in a comfortable bed with your family with you. It won’t be frightening at all.’ And she looked so pleased and the good thing was that the creatures in the wardrobe went away. So Donald, who referred that family to me, was very pleased.
As I said, there were problems early on being accepted. It was difficult for the nurses having a psychiatrist in the team. Some of them had never come across one before, and I remember that one of them came to the boss and said ‘We can’t have Averil here in this hospice. When she sees them she makes them cry. So she must be banned’. So I thought about it, and I talked to the nurses about it and how if you’ve got a lot of frightening ideas in your mind and they all come to the surface, they will make you cry. Sometimes not straight away - maybe later. What is inside them is making them cry. So after that whenever I’d seen a patient and she was likely to be disturbed, I would ask them if I could tell their nurse a little bit about their story. That worked and taught me that the right thing to do when I’d done an interview that might be upsetting was to get the backing of the nurses so they could care for that patient as they dealt with what I’d bought to the surface.
Teaching was a very big role in the end. I’m very proud that Sobell was the first place to set up proper medical school teaching. Other medical schools had nothing other than an introductory half an hour or an afternoon seeing a hospice building, which wasn’t any use at all. Robert Twycross managed to persuade the medical school that we could have all the medical students for a week, 25 at a time. Robert and I worked out a timetable for them. He did all the pain control, but I did quite a lot of psychological teaching.
The first day I gave them a sheet to fill in about their experience of death. Who in their family had died? When had they touched a dead body? So I got to know what ethos of death was in these 25 people. I gave everybody got a chance to talk to a dying patient, something that had been missing from the training. I would talk to the patients - the ones who were likely to be able to cope with this and say ‘Now these medical students, they don’t know very much about what it’s like to be dying. They need to know. They’d be better doctors if they knew. Would you let this student come and talk to you about how you’ve been? And when you’ve seen them will you tell me whether you think they’ll be a good doctor or not and tell me how you found them?’ And that put the student and patient in a very different position. They were much more free and able to talk about what happened. When say five people had seen their patients, everybody gave a detailed account of their own experience and then listened to the other four, so we got real experience in that session. That was how I taught. In all of my teaching I wanted to make sure that they met people who were dying and that they felt they could talk and listen to them.
Once during a week we had a poetry session which they could bring their own poems, anything they liked to do with death. Somebody brought a hymn sung at her father’s funeral. And we shared these together and they were quite delighted with this new way of being taught. I was in a lunch queue in front of some and they said ‘Amazing course! I’ve never got my poetry books out since school and here they are.’ Another thing that I think did them good was that they were taught by nurses and I don’t think that often happened. Ann Couldrick, the senior nurse, was a very good teacher. She and some of the other carers took people out into the district and they learned a lot from that.
I didn’t get involved with teaching nurses much. I gave some senior Macmillan nurses one lecture and they took it on board and it got into their handbook.
The other major big bit of teaching was GP trainees. They were trained in regional groups, and I taught several including Reading and Southampton, about 30 at a time. It was a real privilege teaching young GPs. I used poetry for teaching them too which they liked very much, and it made a big difference. One of them said to me, ‘Every time I see a patient like… I think of that poem.’ I think because I had the background of general practice, I knew what they wanted to know.
After I’d done some GP and medical student teaching Heinemann approached Dr Anthony Storr, who had been my supervisor, because they published his work. They wanted someone to write on terminal care, and he said ‘I know the person’. So Heinemann came to see me, and they came with an idea of what they wanted written and I had an idea of what I wanted to write. We made a contract and off it went.
I started writing. I’ve never thought about how it happened. I used to write at night because my husband couldn’t go to sleep if I wasn’t beside him. So I waited until he went to sleep and then I nipped out and worked for about three or four hours on it and then went back to bed. And the writing went very smoothly.
It didn’t take very long because it was in the top of my head. It was all virgin territory - there was no literature, nothing to look up and read and study and reference. It’s all me and I thoroughly enjoyed doing it. Every teaching session I did, I invited questions. So I knew what everybody wanted to know and that’s why it could go into the book all tidy and relevant.
The book was first published in 1984. A second edition was published in 1994 and I was delighted to be able to include poetry in it. This is one of the quotes on the back cover: “Abounds in the most uncommon thing, common sense. It is that rare thing – a text book filled with compassion, wisdom and sensitivity.” Derek Doyle, The Lancet
I published some academic articles as well. The one in Hospital Medicine was an interesting one because, as I said earlier, they thought that psychiatrists had nothing to offer for confusion. And I soon realised that when patients in Sobell were confused, there was something I could do. I began to sort out a differential diagnosis of confusion - very systematic - it hadn’t been done for confusion before. Then I sent it into Hospital Medicine and they took it straight away.
I wrote a paper about couples facing death for the British Medical Journal. It was a very long piece of work and I thought they would reject because of its length and I was unknown. But in fact they took it and split it into two pieces so I was delighted. I felt I’d become mainstream.
I also wrote a paper for the first journal there was for palliative care itself called ‘Hospice: safe place to suffer’. The idea partly was that before there was good pain relief people dying suffered so much they had no time to think. When you get them pain free, and knowing that they’re dying, they've got a gap when they can come to terms with it and think about it. This was a new situation we had created - the pain-free dying patient. And that’s very different from when you died always in pain or with lots of morphine. It touched chaplains particularly and four or five years later I had a long letter from a chaplain thanking me for it. He’d never read such a thing and found it so helpful.
One of my most memorable patients was a teenage chap with a bone tumour which was very difficult to control the pain. They tried and got good pain control for two or three days and then the pain would be back again. I was asked what I thought. I got to know him and found out that his girlfriend had stopped visiting him and his mates told him that she was going out with somebody else. And we talked about how very painful this was and that when he was needing painkillers, and the pain was overwhelming, he didn’t think about his girlfriend. We talked about this and he realised that if she really loved him she would hang around at least until he died before she went out with one of his mates. He talked it over with his mates, gave up on her and was much better.
This was an important part of my work. It was very common for instance when a woman was admitted she would say ‘I don’t think my husband’s guessed. I keep cheerful. I don’t want him to know.’ And I said ‘I generally meet people’s families when they come in.’ So I’d met him and he said ‘She doesn’t think I know. Don’t tell her.’ So I had to help the couple together.
I also worked with children. I’ll never forget a very close family, and daddy was going to die. The family were wondering what to do about the children. Well the children were brought into this discussion and a little boy suddenly said, ‘When daddy starts really dying I want to stay with granny.’ He knew he would be safe with her.
After twelve years at Sobell I got severely depressed. The first psychiatrist who saw me - he wasn’t very wise I think - said ‘You are so depressed. You must never see another patient in your life.’ He thought it was because of the subject matter I was working with and so he advised that I be given retirement on medical grounds. I think nowadays I would have been treated and given another chance. It was very sad. I’m bi-polar, although it wasn’t labelled that at the time.
The story doesn’t end there. After I left the hospice, my husband was found to have inoperable cancer. He died about a year later.
In 2014 I published a collection of poems reflecting my time with him during his illness and of my own journey through bereavement. It also includes poems based on my work at Sobell.
I have recently visited St Richard’s hospice in Worcester to present them with a donation using money raised from the sale of the book. I met the chaplain, and a quote from her seems a fitting way to finish this account of my life helping the dying:
"The Long Way Down is a testament to Averil’s professional expertise, movingly linked with her very personal experience of loss and skillfully communicated in poetry. I am delighted to have received a copy of this book as a resource for staff and a tool to use with patients and families."