The need for kindness, and really listeningCath Davis
Dr Nosisa Matsiliza wants medical practitioners and patients to know that palliative care doesn’t mean giving up; palliative care is not just for the very last days of life.
Dr Nosisa Matsiliza was practising palliative care long before she officially trained as a palliative care doctor in 2017. The holistic approach to care – looking at physical, psycho-social and spiritual aspects, and in a team – came naturally to her.
Nosisa tells the story of her mother, who was diagnosed with ovarian cancer in 1993. She was working as a doctor at Groote Schuur, at the time. “There was no formal palliative care team – the team was me and my sisters. We removed her from the physicians who were looking after her in hospital – they were my colleagues – because they didn’t know what needed to be done for her. They wanted to over-investigate her. I know it came from a good place – they wanted to help – but once we knew what the diagnosis was, I said to them, thank you very much but we can stop now. And instead, we looked after her at home.”
Her mother, says Nosisa, was happy with that because “she didn’t have to schlep to hospital, and then be overloaded with treatments”. Nosisa knew that what they needed to do then was look after her mother, and make her comfortable. “I didn’t have palliative care training then, but that was my approach anyway – for me it was the only sensible approach.”
Nosisa, who now works in Johannesburg, sees the benefit of palliative care in her work every day. “We are the only clinicians who can spend an hour with a patient. We start with the science of the condition, and the understanding of disease. Then we go on to all the layers – including the psycho-social and spiritual. And having done just that, to have a patient extend her hand from the bed, wanting to touch your hand – already you know what an impact you’ve had.”
For this family, participation in the medical care of their loved one was part of their healing process, and coming to terms with death. Of course it was still painful
But palliative care is never just about the patient. It’s about the patient and the family. Nosisa had a 48-year-old patient with bowel cancer that had spread rapidly. “I was called in on the afternoon that the surgeon wanted to take her to theatre, but I don’t know what the surgeon was hoping to achieve from the surgery – the cancer was everywhere. I was called in just 10 minutes before surgery so I couldn’t stop the surgery. The surgeon opened her and closed her – there’s was nothing he could do.
“But the phenomenal thing was that we could talk through that. She went to theatre for a huge wound that would take a while to heal, and a scar. There was no other point to the surgery. But through talking about it with me, she accepted that, and that the end was near.”
Nosisa marvelled at what happened next with the family: the patient’s husband and two daughters – one of whom was in matric – pulled together to care for her from home, despite the doctors thinking she wouldn’t be able to leave the hospital. With Nosisa there, they were empowered to assist in caring for their loved one, from administering injections, to sharing tea time and other family rituals; there was a lot of laughter in that house.
“For this family, participation in the medical care of their loved one was part of their healing process, and coming to terms with death. Of course, it was still painful for them when she died but they had also made some beautiful memories. Palliative care allowed them that.”
“One of the things Alignd is trying to do is to bring value to looking after patients that require the care that we give. And value isn’t just money; value is also the quality of the work that we do. It’s the value we are adding to the patient.”
One of Nosisa’s frustrations is the issue of when the referrals from oncologists happen. “So often, oncologists only refer patients to palliative care when they don’t know what else to do, when they have run out of options.” Palliative care is not just for the very last days of life. Depending on their circumstances, a person may access palliative care for several years, months, weeks or days. “A patient I met later in her disease had been with a palliative care team for two and half years – from the time of her diagnosis. She sang praises for palliative care because it relieved the burden on her family, and helped them all through this difficult time.”
Palliative care is about giving human life value during a very difficult time of often life-threatening illness, says Nosisa, and it’s partly why she’s contracted with Alignd. “One of the things Alignd is trying to do is to bring value to looking after patients that require the care that we give. And value isn’t just money, value is also the quality of the work that we do. It’s the value we are adding to the patient, as perceived by the patient, not the doctor.
“And there is the financial gain. We have many funders who don’t know what we are talking about – they haven’t got teams that have the capacity to go into trying to understand what we do as palliative care practitioners. So Alignd is coming in to be the bridge between ourselves and those funders. I haven’t stopped sending letters of motivation for palliative care cover for my patients – even to the ones that never pay – because they need to be aware that people are doing this valuable work. I’m hoping one day those funders will wake up and have discussions with Alignd. They are always scared they are going to lose money, but Alignd can show them they are not – quite the opposite, in fact.”