Hello Dr Baines and thank-you for speaking to us today. I’m interviewing you for International Women’s Day as you have been a pioneer and an inspiration to many in your own right, as well as being a close personal friend of the lady who inspired the whole hospice and palliative care movement, Dame Cicely Saunders. So we’ll talk a bit about your friendship with Dame Cicely, before going on to talk about your own work in hospice and palliative care.
You were a close friend of Cicely Saunders. Can you tell me how the two of you met?
Cicely trained in medicine later in life. She read politics, philosophy and economics at Cambridge, but she left her studies, because it was war time and she felt that it was wrong to be studying when there was practical work to be done. She worked as a nurse at St Thomas’ Hospital in London where she met David Tasma, a young man dying of cancer. As a result of this meeting she decided to devote her life to the care of the dying, and she trained in medicine.
I met Cicely in 1954. We had both started our clinical medicine training at St Thomas’. We knew each other very well. We both very active members of the Christian union at St Thomas’.
Can I ask what you thought of her when you first met her?
Well she certainly stood out. Firstly because she was 6 foot tall, but also because of her age and her bearing, as well as her calling.
I have to say that I thought it was very odd, this idea of caring for the dying. If you asked me at the time whether I thought anything would come of it, I would have said no.
If you think of it, it really is incredible. Can you think of any woman, or any man for that matter, who founded not only a hospital but a branch of medicine right around the world? And now there are around 1,600 palliative care services all around the world.
Cicely felt very strongly that this was a call from God to do something for the care of the dying. At this time, doctors had no interest of people who were dying, they were only interested in people who could be cured.
In what ways do you see her influence throughout the hospice and palliative care movement?
I’ve often asked myself what would have happened to the care of the dying if not for Cicely Saunders. Something must have happened, but it would probably have been much more medically focussed, or even socially focussed. Cicely was a multidisciplinary team all in one person. She trained as a nurse, she was a social worker, and then she trained as a doctor, as well as being a committed Christian. If we hadn’t had a Cicely it might have been just a medically or socially based speciality. Her vision was to combine the two. Her influence is immeasurable.
How has she inspired you in your career as a woman in medicine and in palliative care?
When we qualified in 1957 we both had to do a compulsory hospital year. I did it at St Thomas’. Cicely got a research grant to do a study of the control of pain in patients with cancer. She went and did this at St Joseph’s Hospice in East London.
As for myself, I got married and had three children. I became a part-time general practitioner, and I moved around with my husband’s job.
I became a friend of St Christopher’s Hospice after hearing Cicely’s appeal on the BBC for money to build St Christopher’s. I sent her three pounds, which in those days was worth slightly more than it is now, but not that much more. So I sent my three pounds and I went to the opening of St Christopher’s. A little while later, Cicely asked me to join her on her staff. I said no, because I liked general practice. Also, my colleagues told me that it was professional suicide, to leave a career in general practice to go and care for the dying. But I thought about it and eventually joined her in April 1968.
Of course, since then I’ve seen the specialty grow. It has been an amazing experience. When I arrived there, Cicely gave me one A4 sheet of paper, printed on both sides and said: “That is symptom control.” Since then, that has grown into the Oxford Textbook of Palliative Medicine.
You were a pioneer of the home care movement. Can you tell me a bit more about that?
In 1969, we started a home care service at St Christopher’s. At the time, in common with all the hospices then, we didn’t have hospice at home, most people just came in and stayed until they died. So very few people went out and, basically, there was no follow up.
Then one day a woman in her 50s surprised us all by wanting to go home once her pain was controlled. We checked with her GP, supplied her with all the medications she needed, and sent her home.
A little while later, we got a call from her husband, saying that she was in agony. So we went to her house to investigate and as it turned out, her GP had visited and, horrified at the dose of morphine she was on, had tailed off her dosage until it had stopped completely. The obvious result of this was that the pain came back. We admitted her into the hospice, and her pain was easy to control, we just increased the morphine dosage, but the unfortunate result was that the patient never wanted to go home, and she died in the hospice.
After this, Cicely said that we needed a home care service.
We decided that we had no idea how it should be done. Barbara McNulty and I spent some time going to GPs and district nurses in our area, asking whether they wanted home care and how it should be done. GPs wanted to be in charge of hospice at home with support from St Christopher’s. So we started that service. Today there are 48 beds and 850 people at home, of which 50% or just under will die in their own homes.
I think the principle of not just starting something, but spending some time going around asking people what they want is very important, and that is what we did in this case.
The Cicely Saunders Institute, at Kings College London, recently held a seminar named in honour of Cicely Saunders around the theme of home care. I invited three of the GPs who had been there at the beginning, and one of them said something really profound about starting the home care service, he said: “It needed humility on both sides, we learned together.”
One of your passions is palliative care in resource-constrained countries. Can you talk a bit about the work being done by women in those countries?
For people like me who started at St Christopher’s at the beginning, Cicely gave us two aims – to look after the people on the wards and at home, but also to change the world’s view of dying. To be reaching out to the world, and what she did say is that we don’t want to have branches of St Christopher’s in this country or in the rest of the world. We want people to provide palliative care in their own context. We can tell people what good palliative care is, what we can’t tell them is how to do it.
As for women who are working in developing countries, one of the most inspirational is Dr Anne Merriman, who started Hospice Africa Uganda. She had previously worked in Singapore and in Nairobi and wanted to start a model African hospice. Hospice Africa Uganda has been a centre for teaching and training in Africa. It has persuaded the government of Uganda to make morphine available, to be prescribed by nurses and not only doctors. Now that is truly incredible.
Another great woman is Dr Cynthia Goh, who was influenced by Anne Merriman when she was working in Singapore. Cynthia has been a leader in developing palliative care not only in Singapore, but also much more widely, visiting in the Asia Pacific area.
In Eastern Europe there is Daniel Mosoiu, who is the medical director at Hospice Casa Sperantei in Romania. There is also a remarkable lady called Dr Natasa Milicevic who started hospice in Begrade.
What do you see as the challenges to providing hospice care outside of the UK?
At the beginning, one of the amazing things about hospice and palliative care is that it became a respected branch of medicine in this country. It didn’t just stay as ‘fluffy medicine’ or just hand-holding. At a very early stage, Cicely wrote the chapter in the Oxford textbook of medicine about palliative medicine, getting this recognised as a credible part of medicine. This is probably the challenge in all countries, getting palliative care recognised as a respectable branch of medicine.
Is there anything else that you would like to add that we haven’t spoken about already?
Yes, I recently took part in a very interesting project by the department of history at the University of London. They put on a Witness seminar, where they invited back a lot of senior people who were instrumental in certain social movements. I was asked to chair the session on doctors in hospices. The question posed by the university was “Why did doctors work in hospices at the very beginning of the movement.” Instead of answering by myself, I wrote to 33 of the doctors who were there at the beginning. They all replied and I got an extraordinary picture of why people came in. Mostly, people came in because of uncontrolled pain. Or being lied to, not told the truth. For example, one doctor responded by telling me about his mother who was in uncontrolled pain from breast cancer, saying: “My father told us not to tell us her the truth, not to tell her why she was in pain. The deception was the worst pain of all.” I think that has gone now. Not completely, but we don’t lie to people, we tell them the truth.
I find it enormously exiting to have been there at the beginning and to have watched palliative care grow to what it is today.