Durban - A mom calls. She says she feels as though she is suffocating. The doctor says her child only has a few months to live. Her hope is barely a glimmer. But she is praying. She needs to talk.
For Dr Julia Ambler, the co-founder of non-profit organisation Umduduzi Hospice Care for Children, these calls are part of her daily work, where counselling the caregiver of a patient is just as important as treating the patient.
And it’s the reason why she is one of the country’s leading advocates for palliative care, a term the World Health Organisation (WHO) describes as “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness”.
Her organisation is one of the partners in the International Children’s Palliative Care Network conference in Durban this week, where new innovative ideas and research in the field of children’s hospices and palliative care will be discussed.
More and more doctors are being encouraged to study further in the field of palliative care, to ensure a comprehensive and holistic approach to treatment.
Internationally, WHO estimates that only about 14% of people who need palliative care receive it, and for children, 98% of those live in low- and middle-income countries, with almost half living in Africa.
Ambler teaches a module in palliative care at the UKZN school of medicine.
“We are trained to deal with the very difficult situations families are placed in when their child is faced with a life-limiting or life-threatening medical situation. For the family, this is usually a situation they’ve never been in before, and the child also needs emotional support while in hospital, away from their homes and families,” said
Ambler.
Ambler is also a board member of the national Hospice Palliative Care Association.
Palliative care is focused on easing pain, symptom control, assessing the emotional state of the patient and their families, and access to play, education and spiritual care while in hospital.
In one of Umduduzi’s initiatives, a play area for children was created at King Dinizulu Hospital because children needed a recreation space while staying in hospital for months having treatment.
“When a person is in hospital, they are treated for the condition they have been admitted for. However, we look at the person as a whole, and what their additional needs may be, and what their families need,” she said.
The reality that the patient may die, however, always lingers at the back of the mind.
“We have to also deal with some difficult issues that the family has to think about.
“An example would be having a funeral policy in place. It’s something the family or the patient may not have thought of, but we have to prepare them for this - and be better prepared to manage the situation. It has to be spoken about, and we help the family through this,” she said.
Other benefits of palliative care include preparing the family to manage the patient’s condition and future symptoms that could arise.
“If there is a condition where the patient needs to have emergency medication on hand, we inform the families or the caregiver to ensure a medical kit is ready and waiting close by.
“Or, if the patient is going to be in bed for most of the time, we show them how to care for the patient by turning them so the patient does not develop pressure sores,” she said.
KZN Health MEC Sibongiseni Dhlomo, who chairs the national steering committee on palliative care, said it was “not good enough” to not have space and time for palliative care.
“I was disturbed when I heard that a patient with advanced cancer had been discharged and sent home without any medication.
“It is unethical. Even if patients know they are incurable or inoperable, when the day comes, they must not be in pain, and this is why palliative care is so important,” Dhlomo said.
John Olds, the head of fundraising and marketing at Highway Hospice, said palliative care was important in addressing the physical, psychological, and spiritual comforts of the person.
“A whole team of disciplines can be involved, such as doctors, nurses, caregivers, social workers and alternative therapy practitioners.
“The aim is to help manage the patient and promote quality and comfort of life,” he said.
Olds said palliative care should be made a priority
on the health agenda because non-profit organisations were limited by finances when it came to the number of patients they could extend their services to.