Sadly however, only about 14% of the 40-million people worldwide in need of palliative care currently receive it, claims the World Health Organisation (WHO). And when it comes to children, 98% of those needing palliative care live in low- and middle-income countries, with almost half of them living in Africa.
With 21 March being Human Rights Day, we asked Stepping Stone Hospice’s CEO, Tersia Burger and Clinical Services Manager, Sister Sheryl Newman, why palliative care should be an absolute and fundamental human right…
“Stepping Stone Hospice exists today because it was the dying wish of my late daughter Vicky that no one should have to suffer like she did,” says Tersia. Vicky Bruce passed away at the age of 38 after years of suffering from Osteogenesis Imperfecta (OI), also known as brittle bone disease. In her last years of life, she experienced extreme discomfort and pain and the family battled to get her into a hospice programme. “I felt that this totally violated her right as a human being to die with dignity. So much of her suffering could have been alleviated had she been able to enter a hospice programme earlier,” says Tersia. “The change in Vicky once we finally managed to secure the services of a specialist palliative nurse was dramatic. My daughter went from not being able to get out of bed, to being able to spend true quality time with her sons before she died. That is what palliative care does – it goes so much further than managing pain and physical symptoms; it is a holistic approach that truly improves the quality of life for patients and their families.”
Since opening its doors in 2013, Stepping Stone Hospice has assisted over 1 000 patients pass with dignity. “Palliative care offers a support system to help patients live as actively as possible until they die,” says Sister Sheryl. “The reality, unfortunately, is that there are still many misconceptions about palliative care – the biggest one being that it is only applicable for the last weeks of life. We also sit with hurdles such as lack of training and awareness of palliative care among health professionals, as well as health policies and systems that often don’t include palliative care at all.”
For Sister Sheryl, there is no doubt that palliative care is a human right. “‘You are not alone’ is very much a part of our ethos at Stepping Stone Hospice and I believe that the world would be a much better place if we treated everyone with respect and dignity – from the time they are born, until the time that they die. I am an advocate for palliative care and this is the path that I will continue to walk for as long as I am able, so that patients and families can access the care they not only need, but deserve.”