Courtesy of The Rocking Horse Project
Working in palliative care, we know that the life expectancy of patients is diminished due to the life threatening/limiting illness they have. We tell the story of one patient we assisted who sadly passed away this year after being referred to us in 2017. The doctors diagnosed her with end stage cardiac failure and they weren’t sure how long she had left with the advanced prognosis of the condition. With new medications (and quite a few tablets to take with dosages that suited her condition to remain stable), palliative care, regular reviews at the hospital and with a great team working together, the patient was cared for in the best possible way. The RHP came alongside the patient and her mom assisting with transport to reviews, medication not supplied by the public hospital, an oxygen concentrator which she had been using since last year, and benefiting from the times we distributed food and cleaning care packs as well as fun and clothes gifts when we had for our patients.
She grew extremely fond of our play coordinator, who is based at the National Referral Hospital of the country, calling her regularly to say hello as well as bringing give her cards and gifts (vegetables from her small garden at home) when she came for her monthly reviews. She called her Godmother. Our play coordinator will always cherish the early morning calls, since she was referred to RHP, on Christmas day excitedly wishing her a Merry Christmas. We know this year, she will miss that little voice early in the morning calling to wish her a blessed Christmas and telling her what sweets Santa gave her.
Palliative care is not only done in the hospital, but with this patient and others, the RHP play coordinator had gone as far as to call the school leadership when we heard that our patient was being bullied at school. This was the case with this patient with a boy who bullied her. After the call was made and the situation attended to, she came back saying she was so happy to be going to school without any trouble from that boy. She loved school and missing days while admitted made her sad, so she would tell her mom when coming for review to tell the doctor she can’t be admitted because she needs to go to school. Going to school and learning made her happy.
The RHP occasionally gave the patient small gifts when she came for her reviews, some being a doll with long hair (as per her request when we first met her) and soft teddies. Once during her many admissions to hospital, her mom mentioned that when she is at home, she lines up all her teddies and dolls and plays teacher while her students ‘listen’ eagerly to her. We saw her creativity, love of school and joy to teach others through this.
We always remember the beautiful bond that this child and the doctor had. The doctor shared many happy moments with her patient and shared a picture of the two of them in the consultation room during her last review at the beginning of the year. We didn’t imagine this would be the last time she would walk through the door of the consultation room. She would always look forward to being admitted by this particular doctor saying she was kind and didn’t press her tummy hard. The doctor once commented when we asked how her review went by saying “She is actually coping well, I am impressed. Honestly without regular reviews, it would be a different story. Thank you RHP”.
After the passing of this dear patient, we took some time to meet with the mother. The mother upon seeing us and spending some time with us, was very emotional and mentioned how much she missed her daughter. Our work and support to the family continues in this bereavement phase with the play coordinator continually checking up on her and assuring her of our care whenever she needs. Mom commented on how palliative care through the RHP assisted with prolonging the life of her child and her being able to spend more time with her daughter by providing medication and transport for all these years. When the RHP provided an oxygen concentrator for her to be able to go home last year, the mother was overwhelmed with thankfulness as she thought this was something beyond what she could ask us to help with. The mother has now asked the RHP play coordinator to assist with her 3 year old son who continually asks where his sister is. This reminded us that in palliative care, the concerns and questions of the siblings need to be attended to. This little one saw his mother leave in rush with his sister to the nearest hospital and two days later when she came back, she came alone. He has told his mother that he needs to see the doctors to ask her them to return his sister. The mother has tried to explain what happened, but he misses his sister and wants to go to the hospital to find her. The RHP will make a time where the he and mother can come and meet the doctor, nurses and RHP play coordinator to discuss this in an age appropriate manner. The needs of these little ones should not be overlooked or dismissed.
This patient had a cool five years in palliative care and it is a great example of the intervention of palliative care, teamwork and the dedication of a wonderful, hard working mother.
Palliative care is an essential part of universal health coverage and we need to make it known that all who need this intervention should be enrolled in it at the earliest possible time of diagnosis of a life threatening or life limiting illness.
This is a poignant story that really describes the role of play and the child health specialist in palliative care. I think we forget that palliative care is really about the quality of life and for children play, attending school, and fitting in with friends are key components to their quality of life.
I wonder if we could do something similar for adults.