Hilal al Sayer, you have done something quite special, you and your colleagues in Kuwait have done something quite special. You’ve been involved with this new hospice called the Bayt Abdullah Hospice but you come from a background of being a general surgeon and working for the Red Crescent in Kuwait. Can you tell me how you came up, first of all, with the idea, and I gather this is twenty years or more ago, to create hospices for children and improve palliative and terminal care for children?
It was actually my wife and myself, not other people. It was my wife’s experience with my youngest child who went into hospital and she started a play group in the hospital. Then during this time there was a little child that came over who had treatment in London for two years who was terminally ill and came back to Kuwait for palliative care. She promised him to not ever admit him to hospital again and she asked our help, our association which was an NGO at that time. We created a fantastic team and we treated this child at home for nearly six months before he died. He died peacefully in his mother’s arms and this experience gave us the incentive to build a hospice and to never let any child who is dying to suffer in Kuwait.
So what I’m reading from this is that this needs, in your opinion, to be made a priority because in Kuwait originally there might not have been good facilities and a good ambience, environment, for children but now these are there?
There was no palliative care treatment in Kuwait at all. Palliative care is a relatively new specialty, all over the world even, and this palliative care makes a lot of difference when you give it to the child and the family, it’s a holistic care. You have to also involve the family because their bereavement - you have to prepare them for the end of life, and therefore it is an important specialty. In fact, I also spoke to the Dean of the Medical School to create a Chair for Palliative Care in Kuwait.
Palliative care, as you said holistic, it involves not only treatments and day to day looking after the illness of the children but also the environment, making everywhere look pretty and having toys and things like this to play with.
Correct, that’s why the playing is a medium where a child can express his feelings and this is very important. Through media you can communicate with the child. And, of course, the most important palliative care means symptom management. They have a lot of pain, they have vomiting, convulsions, all these are managed properly. Once that is managed, this child who is sick, terminally sick, will start behaving like a normal child and want to play and go to school and do all the other things that other children do.
Could you describe the Bayt Abdullah project to me? It has only just started, the hospital is now fully functioning, it started this year, 2012.
It is the largest in-patient hospice, one of the largest in-patient hospices in the world; it’s on 22,500 square meters. It was designed by a final year architectural Kuwaiti student, her name is Alia Al Ghunaim. She had a project to do in her final year, she came to my wife, sat down, explained the concept of a hospice and designed this beautiful building on 22,500 square meters. It has different facilities and services; one of them is home care, which we are going to their homes, after what we did to the young child, Abdullah, and we have now treated 96 families at home, the whole family and the child. So this is a home care facility, then we have a day care facility where they come in for the day and we take the child and the mother comes back and picks them up later on in the day. We have an in-patient facility and the in-patient facility, if the child at home starts getting convulsions or cannot be dealt with by the mum and dad, we bring them into the in-patient facilities and we have ten rooms for that facility. The last, but not least, is we have respite which is a chalet with three bedrooms for the whole family to come and live in so that they have a rest, respite comes rest, and we take the child and treat him for his symptoms.
Having excellent facilities, of course, are very important but what’s the secret of success of making things better for these children so that they live their lives to the full?
The first secret of success is to alleviate all their symptoms and that’s why it’s called palliative care. When you alleviate their symptoms then you have facilities for play. We used to ask our children, what would you like to do? They always said, ‘We’d like to go to Disneyland.’ We in Kuwait have provided a small mini-Disneyland in our hospice, it’s got a Ferris wheel, it has a magic carpet and a walkway and all sorts of play facilities. So the secret is really it’s holistic care, not just for the child. The mother has to be prepared for the death of the child and her bereavement. The siblings have to be also taken care of because they feel neglected. So the secret is a holistic care for the family.
Clearly, when you have good funding and a beautiful building and a commitment this is all going to happen. In less perfect settings, perhaps, than Kuwait, what kind of suggestions would you make for giving this holistic care a higher priority? Is it possible in less resource-rich settings?
Absolutely. I think the hospice care relies on volunteers, you don’t need people to pay them to work they rely on volunteers. If you have a dream team like what we had, and we were all volunteers at that time, to go to their homes because that’s the main area of hospice care is home care, outreach care. They can go to their homes and they can give them medicines for pain, there are special medicines for pain, and their symptoms, explain to the mum and dad what is going to happen, how the child is going to die. All this helps because you don’t need funds for it. Home care, they can go to their homes and they can deliver this care to the children.
How do you advise people to talk about this very difficult subject of a child dying?
Well, you have to let them talk first and what they feel. They will start telling you what’s going to happen then they ask questions and you slowly, slowly feed back the information and you make sure that you tell them that the child is not going to suffer and that’s the main thing. Because there is nothing worse than a child crying, crying, crying and then suddenly dies. Therefore you explain to them in certain ways. There are special experts in this field, then they can form a little group and they can get support and the nurses can support the child and teach the mothers how to take care of certain symptoms and this is the way it’s done.
How do you know how far to go with giving information? Do people want to know about the impending death of their child?
They will ask.
They will ask?
Usually people ask about it. Slowly, slowly, of course. When symptoms come up you explain the symptoms to the mother and the father and also the siblings. Then slowly they will understand what is happening. We know the complications of the next step and we prepare the mum and the family for the symptoms that are going to arise before the child dies.
So if you were to distil one or two comments to describe the advice you would give in trying to set up hospices all over the world, I know they do exist and many excellent ones in many countries, but what would your advice be from your experience in Kuwait?
My advice is, of course, if you have the money you need a place for a hospice. You have to look for a nice place. Fortunately we have a nice piece of land in Kuwait on Kuwait Bay in front of the sea. Anyway, most hospices in the world they take over a house or a villa and they have the separate areas of service in these houses whereas our house was purpose built for each service that we give. Also you have a team of volunteers, if they don’t know anything about hospices then they should come and visit us and learn from us. They should be also creating awareness for the people because it’s a difficult subject to accept that your child is going to go into a place where he is going to die. Therefore they should create awareness of the hospice movements.
But if you make it something that can be talked about, can be looked into and dealt with in a professional and loving way, then that takes the sting out of the tail?
Well, Hilal, thank you very much for coming in, that’s very, very interesting and hopeful.
A pleasure. Thank you.