A Kenyan perspective on palliative care
As part of our wider conversation to inform the development of our new strategy we will be publishing a series of blogs reflecting on what great children’s palliative care should look like in 2028, what needs to happen to get there and what Together for Short Lives’ role could be in achieving that. Today we hear from Zipporah Ali, MD, from the Kenya Hospices and Palliative care Association
What does great children’s palliative care look like in 2028 and what could Together for Short Lives’ role be in achieving that? How about a world where Palliative care is accessible, affordable and available for children in need all over the world; support for the families of these children is available as well. Our 2028 global vision should be palliative care for every child in need (and their family) everywhere in the world.
Nazim was a 5 year old I took care of. She had a two year old brother, young parents and grandparents who lived with her family. Nazim was a lovely child, bright, full of life, with hopes and dreams for the future; her parents too, had dreams and hopes for her, so did her grandparents. One day those hopes and dreams were shattered with a diagnosis of Cancer of the Kidneys. Despite attempts at treatment, it was not possible to cure the cancer. The sun no longer shone in this home, eye contact was avoided, speeches were hushed, and disagreements were becoming more frequent, Nazim was quickly fading away. . . Hospice care helped address most of these issues, brought a smile back to Nazim’s family, facilitated family meetings, goals and care plans, and, most of all, fostered hope.
This is just one story of a special girl who was the world to her parents and grandparents; a little girl that should have lived her life to the fullest, to become an adult. Many lives are shuttered, many dreams stopped, many questions that go unanswered. Many children and their families have no access to palliative care.
This is the story of many little girls and boys, of shuttered families. This is why we need to work together to support these children and their families; to bring hope for an improved quality of life, hope that we will do our best to address their physical needs, emotional, psycho-social and spiritual needs. And in many poor countries, even hope of addressing their financial needs.
Children’s palliative care should not discriminate against: gender; race; religion; social economic status; culture; level of education or the age of the child. It should be universal, focusing on improving the quality of life of the sick child and their family. Infants, toddlers, adolescents, teenagers and young adults are precious; we need to treat them as our special gems. When they are sick, especially with a life threatening illness, their families are distressed. It is our duty to support these sick children and to extend our care to the divested family members. To cure (where possible); to relive often and to comfort always.
Palliative care is every child’s right; it should be fully integrated in children’s health services; it should be made affordable, accessible and available. It should be part of the Universal Health Coverage (UHC), ensuring that even the poorest of the poor children have access to it.
As advocates, we need to focus on this. Sometimes, the only option of treatment for children with diseases like cancer in poor counties is palliative care. If we do not make this available, we are truly failing our children. Together (PAMOJA) let us work on making palliative care for children universal by advocating for it, integrating it, educating our health care providers, our communities, families and policy makers.
What do you think?
Tell us what you think of this vision for Children’s Palliative Care by posting a comment below. You can share more detailed comments by completing this short survey. You can also submit your own blog to support this series by emailing email@example.com.
We are keen to hear from as many people as possible, so do share this blog with your stakeholders and networks. You can also engage with the conversation on Twitter, using the hashtag #forthe49000