“Isn’t your work a bit morbid and terribly sad? Dying children? Just can’t bear to think about it.”
This sentiment is frequently heard by those of us working in children’s palliative care. It brings two thoughts to mind.
First, while none of us likes the idea of children facing serious illness, refusing to think about it doesn’t make the problem disappear. In fact, a conservative estimate suggests that more than a million children in South Africa are eligible for palliative care, but very few have access — fewer than 5% of this number.
On the other hand, our tiny clinical team consisting of a social worker, doctor and part-time nurse has already seen 250 new referrals this year and we know it is only a drop in the ocean of need.
Second, it is discouraging to acknowledge, despite our best efforts at advocacy over many years, how poorly the general public and even health professionals who should know better, understand palliative care and its benefits. There is still the pervasive perception that palliative care is only appropriate for those who are nearing the end of life, which in turn evokes stigma and means that many doctors feel awkward discussing the palliative option with patients and their families.
For example, Nobuhle, the cutest two-year-old, was born with a condition called biliary atresia which requires surgical intervention within the first few months of life to prevent irreversible damage to the liver. Sadly, her diagnosis was made too late and now her only hope is a liver transplant.
Her liver specialist suggested referral to our team soon after the diagnosis was made, but her parents were very reluctant to see us because they understood palliative care to be the same thing as “end-of-life care” and thought the referral was “giving up hope.”
When Nobuhle’s parents finally agreed to meet the team, their relief was palpable. They wished we had met them sooner. Both had been struggling with anxiety and fear. Nobuhle had been irritable, with pain and itchy skin affecting her sleep. Her mother in particular was questioning if God was punishing her.
One by one, each concern, each symptom was openly discussed and mutually acceptable solutions found. And even though there is enormous uncertainty on whether Nobuhle will live long enough and be well enough to receive a donor liver, she is a comfortable, happy child and her parents are well supported and coping.
Our team uses a combination of counselling, empathy, spiritual care, medications and other techniques to find the best quality of life for the child and caregivers. Regardless of Nobuhle’s future, we will be there, holding their hands on this painful and complex journey.
This is palliative care.
Adults and children diagnosed with life-threatening or life-limiting illnesses face significant health-related suffering. This may be physical pain, other uncomfortable symptoms or emotional and spiritual distress.
Traditional western medicine focuses mainly on the disease — diagnosing and treating. The palliative care approach is different in that it is completely patient and family centred. We ask questions not only to discern a diagnosis, but to understand what matters to the patient and family. Through highly skilled communication we are able to help patients and parents establish their goals of treatment realistically and to possess an understanding of the condition deep enough to ensure that they are capable of making good decisions for themselves or their child.
Palliative care is an extra layer of support when you need it the most.
When I teach the principles and application of palliative medicine to medical students they are consistently and genuinely shocked that palliative care is so poorly understood and unavailable when it is clearly such an essential part of healthcare.
So then why is access to this care such an issue?
Top of my list is funding, or more accurately, the lack thereof.
Almost all palliative care happens in the NGO sector. While there are more than 20, but still far too few, government posts for adult palliative care doctors, there is only one doctor in the entire country paid to provide children’s palliative care, and that is only for 10 hours a week.
This means that at the end of a long day travelling in and around the greater Durban area visiting children in their homes and hospitals, relieving their suffering and improving their quality of life, we drag ourselves home and have to somehow find the energy to work on fundraising for our own salaries.
It is utterly exhausting and simply neither reasonable nor sustainable. One could not imagine a cardiothoracic surgeon having to delay an important operation because she had to attend a funding meeting or create a social media campaign to secure her income through charitable donations. Nor a pulmonologist pleading for his years of study and clinical expertise to be recognised and paid for. And yet, with 18 years’ experience in the field of palliative medicine, this is my life.
Even in the private sector, the medical aids have been slow and even reluctant to acknowledge the need to fund palliative care services for their members.
With palliative care being a financially non-viable career path, it is hardly surprising that very few health professionals choose it. The unacceptable consequence is that patients suffer needlessly. It is not uncommon that a friend or acquaintance will phone apologetically for help after hours because their loved one is struggling with advanced illness and symptoms and they have nowhere else to turn. Their own treating doctors have sent them home without a plan, without warning them of what may come nor prescribing for evolving symptoms, and without preparing them for how to live with their illness.
Leave no one behind
Friday, 8 October 2021 was #Hatson4CPC (children’s palliative care) and Saturday 9 October was World Hospice and Palliative Care Day. The theme of these awareness days this year is “Leave no one behind”.
Sadly, we are being left behind.
The time has come, in fact, the time has long passed, for government, healthcare funders and each one of us to recognise that health is precarious and that palliative care is essential in the package of patient care. How much longer can we rely solely on the goodwill and passion of a handful of committed healthcare workers willing to work for a minimum wage that we have to fundraise for ourselves? My fervent hope is that palliative care becomes properly funded before this handful of good people just can’t give of themselves any more. DM/MC
While in the UK Dr Ambler trained and worked as a general practitioner and a children’s hospice doctor at Helen and Douglas Houses in Oxford.
In her role at Umduduzi — Hospice Care for Children, she consults in children’s palliative care and trains health professionals and medical students. She is a sessional lecturer in the Department of Paediatrics, Nelson Mandela Medical School, University of KwaZulu-Natal. She serves as treasurer on the board of The Association of Palliative Care Practitioners of South Africa (Palprac). As a communication skills expert, she is also a workshop facilitator for the Medical Protection Society.
She has contributed chapters on paediatric and neonatal palliative care in five different textbooks and was instrumental in writing local clinical guidelines, the most recent for care during Covid-19.