Please sign the Million for a Million Campaign
- we have 734 signatures today - we need 999 266 more !
http://patchsa.org/sign-the-petition-patchsa-2019-declaration-of-childrens-right-to-palliative-care/
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June 2019
It is nearly three months since the High Level Stakeholders meeting with government on 18 March 2019 and we ask Tersia Burger of Stepping Stones what has changed for them. We also share about the role of animals in the care of children with serious illness. Finally we highlight a few powerful
comments in support of the Petition calling for all children in need in South Africa - to have palliative care services. Visit the petition site to read further thoughtful comments and if you have not yet done so, please sign the peition.
Michelle
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Stepping Stones was started in 2013 by Tersia Burger in memory of her daughter Vicky Bruce who was born with a rare and degenerative connective tissue disorder, Osteogenesis Imperfecta. By her 3rd birthday Vicky had suffered 41 fractures. Despite a prognosis of “life limiting” Vicky survived her childhood. Botched back surgery resulted in doctors saying there was no further treatment available. The last 10 years of her life was filled with excruciating pain, total loss of dignity and helplessness. Sadly Vicky was not accepted for care by surrounding Hospices as she did not have a diagnosis of cancer or AIDS. Five months before Vicky’s death, Tersia secured help from Hospice Wits. Under hospice care, Vicky’s quality of life immediately improved. Through efficient pain and symptom management Vicky was able to spend a lot of time with her two sons and parents, and to enjoy a simple thing like milkshakes with her kids.
Sadly, though, in 2013 Vicky died at 38. Two months before her death Vicky asked her mother to start a Hospice in Alberton so “no-one will suffer the way she did”.
Tersia has run the hospice successfully ever since. On 18 March 2019 she attended the High Level Stakeholders Meeting in Gauteng and was thrilled to see the Rare Diseases Association present at the meeting. Tersia feels that many children with rare diseases are abandoned, with no treatment or support and as a mother, she recalls being in total isolation while her child was ill. Tersia’s dream is for all children to benefit from palliative care. Tersia feels that most hospices don’t do enough palliative care, they instead do more End of Life care.
Stepping Stones cares for approximately 140 patients monthly and also visits a few child patients at home either daily, weekly, or monthly, with a team of palliative trained nurses and now two oncologists (one trained in PC and the other trained in paediatrics). At present however they cannot bring children into the hospice with adult patients present and Tersia knows an In-Patient-Unit is needed so specialist care can be provided.
Stepping Stones has now received financial support from their community, and plans to build a four-room children’s unit extension to the hospice that will be completed by Dec 2020. With help from an architect on their board, they are in the design phase to build a facility that will allow moms and dads and siblings to move in with the ill child. Stepping Stones is expecting the donation of state-of-the art equipment by a German private hospice, Känguru and hopes to have guidance from Lambano and Sunflower Hospice to provide the specialist support that children at the IPU will require. Most of Stepping Stones staff have worked in children’s wards before, so expanding their service in this way is a natural step forward. Tersia believes that the four-roomed facility will be adequate to meet the need in their area, along with the home visits they already offer.
Tersia believes that children are resilient and specialised palliative nursing often results in the little patients living long lives. Lambano, Känguru and Sunflower Hospice have proved this over and over again. Most of the children admitted in the IPU are likely to come from indigent families, as Tersia knows children from more affluent families die in hospital, funded by medical aids – but still lacking much needed palliative care. The need for training in paediatric palliative care is huge. With support from HPCA Stepping Stones plans to open a Centre of Palliative Learning and in due course will offer SAQA accredited training courses.
Stepping Stones plans to name the Paediatric IPU after an 11-year-old girl who died at home under the care of the hospice.
Way forward since 18th March 2019 meeting
Tersia feels it is sad how poorly the petition calling for children’s palliative care has been supported, and would like to see the hospices drive it more. Tersia would also like to see more hospices treat children. She feels the biggest challenge is doctor-referrals as it seems doctors think it is mark of failure to refer their patients to hospice, and so the referrals happen far too late, when little palliative care can be given, and so mostly its End of Life care. Palliative Care should start at the time of diagnoses and not only at end-of-life. Tersia’s suggestion is that all the adult hospices who are members of HPCA receive training in how to care for children, perhaps under the auspices and guidance of PatchSA member hospices.
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Role of animals in children's palliative care
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Johnny was a little boy with an inoperable brain tumour and at a certain point, his parents heard the dreaded words, ‘there is nothing more we can do’. Johnny wanted to leave the hospital, seemingly to return home to die there. His mother resisted this, fearful of the trauma of him passing at home, making the home a place full of sad memories. Through palliative care psycho-social support Johnny shared the reason he wanted to go home was to be with his beloved dog Cupcake.
In the words of a hospice CEO, patients need their animals around them. She believes patients often resist being hospitalised because this means being away from their pets. There are hospices that allow animals to visit and work with pet therapy associations so that once-monthly, trained husky dogs visit patients, putting their heads on patients’ beds to be stroked.
The hospice CEO explains that dogs are also used to counsel children. This hospice CEO spoke about the case of a family with a 6, 12 and 16-year-old children who had to be told their mother was dying. The doctor had never been able to break this news… The hospice called for a visit by a dog ‘therapist’ and the dog was amazing. When the 12 year old cried the dog put his head on the child’s lap. He moved from one person to the next, where ever the emotions were at its highest. In the middle of a very traumatic moment, the dog brought its lead to the 6-year-old, and asked to be walked outside, the child took the dog out for a walk returning only when the trauma had subsided.
Often they find that the child is not prepared to open up to an adult but will talk to the dog.
The hospice CEO feels hospital superbugs are more dangerous to patients than pets and patients are used to the germs of their own pets. For Johnny the hospital agreed to allow Cupcake to enter the hospital to be by the little boy's side, providing unconditional love to the end.
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NEWS
Landi Bezuidenhout from Nelspruit Hospice shared this from the End Well Foundation
Palliative care pioneer, physician, and author Ira Byock, MD, reminds us that when we invite patients to consider care "at" the end of life, most will not feel ready. But changing our language to say "through" the end of life means care starts right now
https://www.linkedin.com/feed/update/urn:li:activity:6532846033096052736
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2019; Volume 20, No 5, May
International Association of Hospice & Palliative Care Book Reviews
HANDBOOK OF SUPPORTIVE ONCOLOGY AND PALLIATIVE CARE: Whole-Person Adult and Pediatric Care
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Powerful comments in support of the Petition calling for children's palliative care in SA:
- As a grandparent who Iooked after and watched my grandson slowly die Heartbreaking and support would have made world of difference to him.
- My son died of cancer, and I feel this is a big need.
- All children deserve and have the right to access the best palliative care that can be provided.
- It is imperative that palliative care is available for children
- This is such an important thing, not only for the patients but for the family as well...........
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