Friday, 12 February 2021

Lack of education in palliative care deprives children from enjoying improved quality of life

Written by
Angie, Abigail, Anton and Benjamin Hawkes

Monday 15 February 2021 is International Childhood Cancer Day.

Benjamin Hawkes was just 10 years old when he was diagnosed with Osteosarcoma (bone cancer) and over the next ten months he underwent chemotherapy, limb salvage surgery and radiation therapy. A clear PET scan at the end of this arduous treatment was cause for celebration, but two months later it was found that the cancer had metastasised and was invading Ben’s lungs.More aggressive chemotherapy and many difficult weeks in hospital followed, leaving Benjamin weak and uncomfortable with an open-ended drain inserted into his lungs. At that time the oncologist took Ben’s parents, Anton and Angie, aside and told them that there really wasn’t anything more they could do for Benjamin other than sending him to a different hospital for radiation that could extend his life for a short time.

Anton and Angie, from Pennington in KwaZulu/Natal write, “It was and will always be one of the toughest and most difficult moments in our lives. We sat with Ben and told him the truth - something we had agreed on from the start - and his little face fell as he asked, ‘So I’m going to die?’ I replied : ‘Yes, my boy…’ We then told him that it was up to him what he wanted to do next. We could move him to a different hospital for more radiation or we could go home. Ben may have only been 11 years old but he answered, ‘I promised that I would beat this cancer and I did, but it came back and I’m just so tired. I just want to go home.’ ”Surprised at their choice and reminding them that Benjamin would likely die within a few days without further treatment, Anton and Angie honoured their son’s wishes and with very little assistance arranged to collect the medical supplies and equipment needed to take him home. Through a series of chance events, Anton received a phone call the next day recommending they contact Umduduzi Hospice Care for Children, a charity organisation that provides palliative care to children and families in hospitals and in homes in and around the greater eThekwini district. (The word ‘umduduzi’ is the isiZulu word for ‘the comforter’.)

When Ben’s health seemed to improve and he outlived the 3-day prognosis from the oncologist, a concerned Anton found Umduduzi’s details online and sent them an email at midnight.Anton and Angie describe what happened next.“At 8 a.m. we received a phone call from Dr Julia Ambler from Umduduzi and she was at our house at 1 p.m. that same day.Dr Ambler introduced herself to Ben. He instantly liked her because she spoke to him as an adult, never pinched his cheeks or rubbed his head, something Ben really hated. Over a cup of coffee, we had the first honest chat about palliative care, what we could expect and a conversation about death. The most notable thing to come out of this chat was that one should never give timelines about the passing of a loved one, as we found out with Ben living at home with us for almost another seven weeks. Dr Ambler advised us on what to expect in the dying stage, discussed extra pain medication to ensure Ben would be pain free as much as possible, and how we were all coping emotionally. Ben continued to surprise us and we went on to have outings to our local beach kiosk, Crocworld and we even managed to go to the movies to watch one of Ben’s favourite sequels, ‘Guardians of the Galaxy II’. But more importantly, he was at home in his own bed with his mom, dad, sister, dogs, his guinea-pigs, and his Lego.Ben finally died peacefully at 2 a.m. in his bed at home surrounded by all those who love him…. mom, dad, his sister Abigail and dogs Teddy and mNini.”

Having known very little about children’s palliative care before their son’s cancer diagnosis and the experience of his final weeks, Benjamin’s parents have since become passionate advocates for it.They write, “There is a definite need to reach out to and educate doctors, medical practitioners and families about the benefits of palliative care; how important the last bit of dignity and sense of peace it brings for patients and families alike. Having the support of someone who understands what you are going through and reassuring you that you are doing the best you can do for your child, is invaluable.Those last 7 weeks we had with our son was the most terrifying, heart wrenching, but most special time and having the support of Umduduzi, helped us immensely.  The grief of losing a loved one never goes away and I know, two years on, that we still shed a tear almost every day but sharing Ben’s final moments at home as a family was, and always will be, very special.

Supporting children’s palliative care in South Africa

Patch SA is the national charity supporting the development of hospice and palliative care services for children like Benjamin and for all children with any type of life-threatening or life-limiting illness or condition, and their families.Patch SA Chair, paediatrician and Paediatric Palliative Care Specialist, Dr Michelle Meiring, released the following statement for International Childhood Cancer Day and the launch of Patch Academy:“

Despite the National Policy Framework and Strategy on Palliative Care being ratified in 2017, it has yet to be implemented and there is an enormous gap in the provision of education on children’s palliative care for medical and allied health care providers. Education in the basic elements of paediatric palliative care would ensure that children like Benjamin and his family would receive good palliative care from the time of his diagnosis, and not just in the last weeks of life.This International Childhood Cancer Day we are proud to announce the launch of Patch Academy, on online learning platform providing CEU accredited certificate courses on elements of children’s palliative care. While internationally relevant, the courses have been created specifically with South African health care providers in mind and are suited to doctors, nurses, social workers, psychologist, pharmacists, therapists and in fact anyone who wishes to learn how to provide palliative care to babies, toddlers, children and adolescents.”Should you wish to learn more or undertake one of the CMSA accredited Patch Academy courses, please go to www.academy.patchsa.org

ENDS

Permission for the use of this story and image has been given by Anton and Angie Hawkes.

For further information please contact:

Sue Boucher  
Email:  This email address is being protected from spambots. You need JavaScript enabled to view it.   
Cell: 0823744632 

For radio or TV interview purposes, please contact:

Dr Michelle Meiring  
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
Cell:  082 408 7102 

Dr Julia Ambler
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.
Cell: 0764178977 

About children’s palliative care
Palliative care improves the quality of life of patients and families who face life-threatening illness, by providing pain and symptom relief, spiritual and psychosocial support from diagnosis to the end of life and bereavement.Palliative care for children is the active total care of the child's body, mind and spirit, and also involves giving support to the family. It begins when illness is diagnosed and continues regardless of whether or not a child receives treatment directed at the disease. Health providers must evaluate and alleviate a child's physical, psychological, and social distress. Effective palliative care requires a broad multidisciplinary approach that includes the family and makes use of available community resources; it can be successfully implemented even if resources are limited. It can be provided in tertiary care facilities, in community health centres and even in children's homes.World Health Organization 2002 

About Patch SA
Palliative Treatment for Children South Africa (Patch SA) is an inclusive and compassionate network that aims to share specialised knowledge, tools, resources and opportunities to ensure the best possible care for children with life-threatening and life-limiting illnesses, and to provide support to healthcare professionals, families and lay caregivers.Our vision is to ensure the right of every child to access quality palliative care in South Africa and our mission is to mobilise and support a sustainable network of individuals, organisations, professionals and caregivers to provide holistic and culturally appropriate palliative care for children and their families from diagnosis to bereavement.Find out more at www.patchsa.org 

About Patch Academy
Patch Academy is an online training platform created as an educational resource for all members of the multidisciplinary team providing care to babies, toddlers, children and young adults with life-threatening and life-limiting illnesses and conditions and to their families. Patch Academy provides online learning and Colleges of Medicine of South Africa (CMSA) Accredited Certificate Courses on the key elements of paediatric palliative care.Find out more at www.academy.patchsa.org

About Umduduzi Hospice Care for Children Umduduzi was founded in December 2012 by Dr Julia Ambler & Ms Tracey Brand together with a team of committed Board Members.The organisation brings compassion, dignity, relevant care and relief from discomfort and pain to children diagnosed with a life-threatening or life-limiting illness within KZN. This is done through direct patient care, mentorship, empowerment of caregivers, training and advocacy.Umduduzi provides direct services to all State Hospitals in eThekwini and telephonic support to every State Hospital in the province. We also provide direct services to several private hospitals in eThekwini.Find out more at www.umduduzi.co.za  

The National Policy Framework and Strategy on Palliative Care
This can be downloaded from: https://hpca.co.za/download/national-policy-framework-and-strategy-on-palliative-care-2017-2022/   

Published in Health and Medicine