Honesty, empathy and morphineAlignd
Dr Julia Ambler is a paediatric palliative care doctor who, together with the team at Umduduzi Hospice in KZN, provide care and support for very sick children and their families. Her primary tools are honesty, empathy and expertly administered morphine.
There’s a story Dr Julia Ambler tells about a two-year-old girl who was diagnosed with a rare, slow-growing brain tumour. Because of the tumour she was undernourished, and once treatment and radiation started she wouldn’t eat at all. The doctors put a feeding tube directly into her stomach. As the little girl got older, it was becoming clear there was no treatment for her. But the oncologists were reluctant to stop. She continued to be force-fed through the PEG tube, and her parents had to drag her, kicking and screaming, to the hospital for weekly tests. Julia began the palliative care journey with this little girl and her parents.
Dr Julia Ambler is co-founder and deputy director of the NGO Umduduzi – Hospice Care for Children, in KZN. They provide care and support to children with life-limiting and life-threatening illnesses and to their families. It’s a difficult and emotional job walking the journey with parents facing the loss of their precious child.
Julia typically sees five different children in a day, all with dreadful conditions, at five different hospitals, and squeezes in a tutorial for medical students on how to break bad news in-between. She’s also a board member of The Association of Palliative Care Practitioners of South Africa (Palprac).
Julia qualified as a doctor from UCT in 1998, and did her internship at McCord Hospital in Durban. This was at the height of the HIV era, without ARVs, and explains the root of Julia’s passion for palliative care. The prevalence rate of HIV in Durban was high, and the medical staff had virtually nothing to offer these patients. They had very limited drugs to treat the opportunistic illnesses, and people were literally dying like flies. “We were certifying about five deaths a night. I just felt so helpless – I never had any exposure to palliative care in my undergrad degree. I had no experience in dying, which is crazy for a doctor,” says Julia.
What Julia brought that family, and has brought so many others on the painful journey of living with a seriously ill child, is a sense of relief
She really discovered palliative care while working in the UK and something clicked. She did a diploma in the subject and worked in the specialty for seven years before coming home, and working with absolute dedication and passion in this field in KZN.
Julia’s impact on the little girl with the brain tumour, and her family? She gave the parents a choice to stop it all. She let them know they had the option of not having to go back to hospital, of not getting their daughter’s bloods checked every week: “What difference was it going to make? How much more are you going to put her through?” she asked them.
What Julia brought that family, and has brought so many others on the painful journey of living with a seriously ill child, is a sense of relief. It was a relief that there was someone there for them who was honest, who was able to just listen and then address the needs that were important to them.
While oncology doctors are switching the chemo up and down; and the neurologists are checking and checking again; and everyone’s feeling confused and distressed, Julia brings a sense of calm and rational decision-making, through compassionate honesty. She helps families make decisions that are good for them and their child. It’s often about trade-offs. And a big part of this is having the conversation about when and where the child will die, and how to manage the pain.
The little girl with the brain tumour never went to hospital again. “We were able to say to them, she’s going to die anyway so let’s think about keeping her comfortable,” says Julia.
The parents decided to remove the PEG tube, and the young girl chose what and when she would eat. The family felt in control and it put an end to the fighting around hospital visits and endless, and often painful tests. She planned her own funeral: she chose the colour theme, her dress, she was part of the process… She was at home for 10 months before she died at age 9. By the time she did die, the family were relatively at peace and the journey had been almost healing.
Palliative care is an additional layer of support, focussed on providing relief from stress, in the form of symptom-controlling medication, rehabilitation, and counsel, which doesn’t necessarily cure illness, but does make it easier to cope or recover, explains Julia. But it’s not readily available.
Most of us are going to get frail with age and yes, we are all going to die. Being ill is a very vulnerable time and no one wants to suffer at the end. But there are few palliative care-trained doctors, and most medical schemes don’t cover treatment outside of hospitals.
It’s one of the reasons Julia has contracted with Alignd. It’s time, she says, we have funders that understand the real issues that patients face. “Alignd’s model is patient-centred which is hugely appealing. But we recognise that funders aren’t going to fund something that isn’t cost-effective for them. The way Alignd have designed their product on a value-based paradigm is so much more sensible than what is currently happening in the private sector.. Under a fee-for-service model, doctors aren’t incentivised to discharge patients or prescribe palliative care – it’s more cost-effective for the doctor if the patient is in hospital, she says. “Alignd are shifting the paradigm cleverly, with such care and compassion. Right now, palliative care is not a particularly sustainable career. If we can encourage more doctors to study palliative care because it is a good career path, with fair pay, that’s a good thing for everyone.”