Understanding Palliative Care with Finella Craig

Dr Finella Craig, Paediatric Palliative Care Consultant at Great Ormond Street Hospital (GOSH) provides care for patient Romeo, who has a congenital heart defect. Dr Craig explains why she finds Romeo so endearing, why the unique role her and her team perform is so rewarding and why the choices her team provides are so important to the patient and family.

We look after children with complex medical conditions, some of whom may not live to adulthood. Our role encompasses supporting children and their families to live as well as possible with whatever time they have. And to make the most of the opportunities that come their way.

At the moment, Romeo’s health is relatively stable. Our main role initially was to try and get him home, something we try to offer to all children - some of whom may need a lot of medical intervention in order to return home and others who may be a little more stable. Romeo was very fortunate in that he was really quite stable at the time he left the hospital. And so far, Romeo has remained relatively stable. So, in effect we [the palliative care team] have been able to take a little more of a back seat at the moment and allow the family to get on with enjoying life with Romeo. We will keep in regular contact with his mother and visit Romeo as and when he needs a little more medical or nursing support. If we don’t need to do a home visit, we will catch up with him when he comes for his cardiology appointments at GOSH. The idea is that when Romeo’s medical needs change, we will be there to be able to adapt our care and step up to whatever Romeo requires. So over time should Romeo’s condition deteriorate we might be looking at seeing him at home to change his medication doses or introduce new medications. Perhaps having to have conversations with Romeo’s parents about where they want him to be cared for if he is very poorly and planning his medical and nursing care so it could be delivered at home if that’s where they want to be.

I think at the moment we’ve got that lovely opportunity to not have to address those things immediately. It’s really nice when you’ve got a family that can get home and have space just to enjoy being at home.

I hope with having palliative care involvement, Romeo’s family feel more confident about being at home. They know they have people they can phone daytime or night-time, who can help give advice if they have got any worries about Romeo. Also, if his mother contacts us because she is worried about him, we can often organise to go out and see him. I think that is a really nice service to be able to offer families.

The first thing I think about when I think about Romeo is the big smile. He is one of those children who has been through so much but actually his Mum has managed it in such a way that Romeo is not scared of people. He must have had to meet so many strangers, for example blood tests and people examining him when he has not been feeling well. And yet he feels so safe with his mother that when we come in we just receive a big smile… he really is such a lovely little boy who will smile through the hardest of things. Romeo has got such a nice nature.

I think it would be nice for people to understand that palliative care isn’t just about ‘end of life’ care. That palliative care is really about living and it’s living the life you can and living it for as long as you able to live it. It’s about good medical and nursing care, symptom management and support throughout an illness. And yes, when the situation changes and someone is coming to the end of their life, that palliative care is there to support them and their family and the people who are important to them. But if we [palliative care services] are only there at the end, we’ve missed out on all of that living. And actually, palliative care can really support families to perhaps do more and enjoy life more than they anticipated they could do. That would be my main message.

The film crew were all lovely and I really enjoyed filming with Romeo’s family. They were such good fun and I think really enjoyed being filmed – Romeo certainly seemed to. The team which were filming with Paul were really, really nice and fun to spend time with. They were incredibly sensitive. And they bought me coffee on a home visit!

What I like most about GOSH is that it’s all about patients and providing the best care we can. The downside is that there is a lot of self-sacrifice for staff. Everyone is very committed. I like that people spend an awful lot of time trying to make the right decisions for children, making sure we get it right. The tiniest detail which people might consider as the most insignificant related to a child is important to GOSH. And I think sometimes people don’t realise how much goes into that. Everyone really, really cares.

There are lots of different things which I find rewarding. When patients are referred to palliative care their parents are often in the place they never wanted to be, facing the worst possible thing they could ever imagine and probably never even dared think about. And actually, you can make this less bad. For someone like Romeo you can say ‘actually you have a lot of living to do’ and you don’t need to focus on ‘end of life’ at the moment. You can focus on living and the future. We know we might have to think about that at some point, but we don’t have to today. So that can be very rewarding. And sometimes sadly we meet children who are not going to have that time of being well. But you can always make a difference. Sometimes the most important thing is giving families choices in where their child is cared for. It’s also about good medication management and making sure you do the best you can with the medications so that they are comfortable and pain free. And also, that you use medications that can be given at home, if they want to be at home. And when a child dies comfortably in a place where the parents and the child wanted to be, just to be able to give that choice is rewarding… Being able to look after children well whatever stage of their illness is very rewarding.

What I love about palliative care as a career is that you need to know a lot about a broad range of diseases and medications but you also need to really know your patients so you can develop care plans that are very specific to them as individuals. You also need to be flexible so you can deliver care at home that is just as good as the care they might receive in a specialist hospital. I love that I can spend real time with my patients. Very few jobs in medicine allow you more than fifteen minutes at time with your patients. I get to see patients at hospital but also at home and I can also go to their schools if needed. Really knowing the children and their families can be such an important part of delivering good compassionate care as their health deteriorates.

The other thing I love about palliative care is the ‘every day’ victories. And when you work in paediatric palliative care, you may have had a role in helping them achieve that victory. When we have looked after someone since they were a baby and parents send a first day at school photo. That’s amazing! Or a first night at home after a long hospital admission, or a trip to the cinema. There are lots of small victories to be celebrated, and they should be. I am looking forward to celebrating some of Romeo’s – I’m sure there will be many!