Receiving a terminal prognosis for a loved one is like receiving a knife to the heart. A few people have gone through it, but nobody really wants to think about what it’s like. However, many people all throughout the world have to deal with it.
To support family and friends as they process and navigate their loved one’s terminal diagnosis, and prepare for their passing, a group of University of Cape Town (UCT) academics established a special palliative care programme at Victoria Hospital in Wynberg (a UCT teaching hospital). Aimed at families in need, the Abundant Life Palliative Care (ALPC) programme has been providing patients and their families with critical end-of-life care support for the past 15 years. Supported by a team of skilled nurses, led by sister Elizabeth Pitout, the programme was designed to integrate palliative care into the public health system and provide patients with life-limiting diseases, like cancer and organ failure, with this much-needed level of care.
According to Dr Clint Cupido, a senior lecturer in UCT’s Department of Medicine and the head of medicine at Victoria Hospital, the idea to get a programme of this kind off the ground started almost two decades ago. During that time, Victoria Hospital’s internal medicine division recorded many deaths due to HIV/AIDS, tuberculosis, organ failure and various cancers. The cancer patients were referred to St Luke’s Hospice for end-of-life care. But sadly, others got lost in the system.
Our goal was then to develop a palliative care service that was designed for the South African context, by a team of South African healthcare workers, to ensure that all patients receive equal access to palliative care. When we first started out, our objective was to pilot a palliative care service and, in time, redesign it to be a model of care that’s sustainable, reproduceable, culturally and spiritually acceptable, financially feasible and proudly South African. And through teamwork and hard work, we’ve reached our goal,” Dr Cupido said.
The programme adopts a family-centric approach because healthcare workers understand the importance of involving the patient’s loved ones in the palliative care process. And this, he said, needs to take place from the get-go following the patient’s diagnosis.
“The patient cannot possibly process everything on their own; it’s very difficult. So, we bring the family in from the beginning to hear what we have to say and so that we can answer any questions they may have around the diagnosis and what it means for their loved one. It’s important that everyone is on the same page,” he said.
Following the patient’s discharge from hospital, and with their consent, the ALPC team invites the patient and their families to their centre in Wynberg, just a stone’s throw from Victoria Hospital, for
bi-weekly meetings and information-sharing sessions. During these sessions, Cupido said, clinicians cover a range of relevant topics such as what heart and renal failure mean, and how to aptly care for patients in need of palliative care. Focusing on how to prevent pressure sores in patients who are bedridden and the need-to-knows about bed baths are just some of the topics regularly touched on. Sessions also cover caring for patients with dementia and the challenges around supporting patients with behavioural issues. Cupido said the APLC also places special focus on the carer and facilitates discussions on preventing burnout, carer fatigue, and listening to understand why patients behave badly.
How to join
Cupido considers the programme as “highly beneficial” for patients and their families and encourages new participants to accept their invitation to attend sessions, for valuable out-of-hospital support.
“We’ve created an environment where a group of people going through more or less the same struggle can come together to learn from each other and to support each other during a very difficult time. Again, it’s the spirt of ubuntu coming through and it’s beautiful to witness,” he said.
Since its inception, the ALPC programme has grown by leaps and bounds. From just 30 patients in 2009 and 100 in 2010, this number skyrocketed to 850 referrals in 2023. To adequately support patients and their families, the team of healthcare workers has grown too and today includes a social worker, physiotherapist and dietician on site.
“Over the years the ALPC programme has become so well known among community members in Cape Town’s southern suburbs. We are serving the community the best way we know how, and patients and their families are beyond grateful. We see the gratitude on their faces after each session, and that’s the most rewarding part of my job,” Cupido said.
Honouring life before death
While death is inevitable, Cupido said the programme also aims to conscientise patients and their loved ones on the importance of honouring life just before death. And one way of doing this, he added, is by showing support – taking time off work to spend with patients in palliative care and doing little things to make them feel loved and comforted.
“This level of care goes a long way. And not just for your own loved one or friend, but for a neighbour, a friend of a friend, who doesn’t have anyone and who would appreciate your time and compassion. Our communities are unbelievable and are really showing up for their neighbours in need. We have so many success stories like this to share and it is heartwarming,” he said.
Cupido said he is proud of the ALPC programme and the strides it has made over the years. Thanks to its success, other hospitals in the metropole have also latched onto the idea and are in the process of trialling it among their patients to gauge its effectiveness. These programmes, he added, are still in infancy stages.
Some people predicted our program would fail and that no one would show up to our meetings when we first started it. It’s never simple to change society conventions, but we succeeded. More than 10,000 families in Cape Town are better now as a result of this program’s experiences and benefits, he added.