In December we said goodbye to Professor Christina Faull, a LOROS legend who came to the hospice in 2003 as a consultant in palliative medicine. Her enquiring mind led her to write the handbook of palliative care, considered a bible for doctors caring for people at end of life, and to research as a way to improve patient care. Her achievements are numerous. Before she left for new adventures we spoke to her.
Reflecting on your 21 years at LOROS what do you consider to be your most significant achievements?
“Well, there’s so many different ways of looking at that. There are individual patients that you carry with you or family members that you feel you made a difference to that resonate. I think also that when we developed a Masters in Palliative Care, that was significant. It was such a marker of us being able to share high level knowledge and encourage people who want to study and to take the subject further. I think that was a really exciting and valuable achievement. Sadly, it doesn’t exist anymore.”
Tell us more about patients that stayed with you.
“Most of the patients that are really, really memorable are the ones that taught me something, or those whose situation I found very challenging. For example, my research on withdrawal of ventilation in Motor Neurone Disease comes from doing it badly and I found it the most challenging thing I’ve ever done in a number of ways and needed to know how to handle it better. It has proved quite a useful thing to be able to say ‘I’ve found this really difficult and therefore I needed to do something to improve it’. To do something of that sort of importance that comes from a challenge, is a huge motivator for me, but it’s not easy.
But other patients stayed with me because I suppose they challenged my way of seeing what a good end of life might be and what they might need from me as a clinician. There’s a patient that always stays in my mind, he didn’t want to give up, he wanted all of the trials and he travelled up to Leeds, despite us saying ‘really this isn’t going to help you’. He came back and he said, ‘you told me and I didn’t listen to you’. At Marie Curie, they use a poem about footsteps in the sand, and when it turns to one set of footprints and that’s when I carried you – it’s like that. It’s about finding out what is the right way that this person needs to be….’carried’ is a bit patronising, but to be alongside people to be the greatest help. People need to feel safe. Feeling safe is so important in palliative care I think.”
So it’s about understanding each patient’s needs?
“Yes, that sound a bit easy just to say ‘understanding’ because they may not be able to express it. You may not be able to spot it. You’ve got to learn it together almost, as you go along. You’ve got to be willing to see it from their perspective and have the skills and openness to question it.
“You need to have that authentic curiosity to say ‘can you explain why that’s important to you?’ They may take those things for granted, they may not be able to tell you. For example the last days for people from Muslim communities and the spiritual aspect, which if you’re a Muslim you’ll know about but if you are not a Muslim, how do you find that out? How do you bridge that gap to understand it? There’s so much work and skill, and you need a willingness to be wrong. It’s a very difficult thing to teach to junior doctors. So understanding? Yes. But to get to that point you’ve got to do so much hard work and thinking.”
In terms of your writing, what’s the inspiration behind writing the handbook of palliative care?
“Apart from proving my English teacher wrong? Who said I was no good at English?! There was a gap certainly when I started the first text book. There was a massive reference book that had just come out but there was a gap between that and what most people might read. And particularly for people outside of palliative care – what does a GP need to know? And a very practical solution. So you don’t just tell them to control the pain with morphine, you explain how you actually do that in as much detail but as concisely as possible. I think the book recognised that gap. I was given the opportunity to write it and then really enjoyed it.”
What do you feel you’ve learned about life by working so closely with patients at the end of theirs?
“It’s hard to know when you’ve been immersed in it for so long. That life never seems long enough. That relationships are pivotal to meaning. That closure is quite important. Health priorities aren’t necessarily the same as people’s priorities.
“Most people don’t want to face their own reality, they might talk about it hypothetically but it’s too painful to actually face for long. That’s usually the point where you can come in and give that reassurance. The end of life is very tough. No matter how good you make it. It’s very tough.”
Why did you specialise in palliative care?
“All sorts of reasons. I think when I discovered it, it felt like coming home. I think it was the relationship between the patient and their family but also it was quite holistic, and integrated the mind and body.
“Also, obviously palliative patients need action swiftly. You’ve only got today, so you’ve got to get on with it, and you’re allowed to break the rules. People allow you to as well so you get your x rays early or tests done quickly. You don’t have the frustrations of waiting four years on a waiting list, so I like speed, I like that rule breaking. Rules are there to be broken!
“It’s also a huge privilege isn’t it? To work in an organisation like a hospice where everybody is trying to do the same thing really. To make it better for this person. Whatever we can do we will do it. And that’s the reason people work here at LOROS isn’t it? Even non-clinical people. Everybody.”
