Knowing what support exists before a crisis hits

When a family is confronted with a serious illness or an end-of-life diagnosis, there is often a scramble to work out what help is available. A recent webinar organised by wellness network JEWELL aimed to change that by bringing together professionals working across palliative medicine, hospice care, aged care, bereavement counselling, and spiritual support. The message was that families shouldn’t wait for a crisis to start asking questions about care. 

JEWELL is the Jewish wellness space in Cape Town. Its work focuses not only on responding to people in crisis, but also on identifying community needs, connecting people with existing resources, and strengthening collaboration. 

“Serious illness, ageing, dying, grief, and loss are things that will touch every one of us in some way,” JEWELL founder Natalie Barnett said. “And yet very often, we begin thinking about the care and support available only when we suddenly need it.” 

The webinar sought to give the community a clearer picture of what support exists and how different forms of care can work together. A key starting point was dispelling the idea that palliative care means someone is about to die. 

Shelly Korn of Sunset Care said there was significant confusion about palliative care, even among clinicians. Palliative care can be provided alongside treatment for serious illnesses. It can help with symptoms such as pain, poor sleep, low energy, appetite loss, and anxiety. It also addresses emotional, social, and spiritual needs. Support extends to family members and others caring for the patient. “It can be seen as a team sport,” Korn said. 

This distinction matters because palliative care isn’t limited to the final stages of an illness. Dr Andrea Mendelsohn, a palliative care doctor at Groote Schuur Hospital, said most patients seen by her team return home. 

“Twenty percent of what we do is probably people who have end-of-life care in hospital,” she said. “But the 80%, so the majority of the patients we see, are going to go home and live with this condition, and our goal is to help them keep living.” 

For families, knowing this could change when they seek support. Palliative care doesn’t necessarily mean that curative treatment has ended. 

The webinar also highlighted the importance of knowing what services are available within the Jewish community. 

Highlands House social worker Samantha Klynsmith said the facility is increasingly caring for frailer members of the Jewish community, including people with dementia and multiple health conditions. Its multidisciplinary team considers residents’ medical, social, and spiritual needs. It also works with families to establish what matters to each person. 

This can become particularly important when relatives live elsewhere. Klynsmith said staff sometimes need to become closely acquainted with residents to understand their wishes and what provides them with comfort. 

That is why she urged people to discuss their wishes before they are unable to communicate them. “Death is still quite a taboo subject, even with the aged,” she said. “We don’t always want to speak to it, but we really owe it to ourselves to have those tough conversations.” 

An advance directive can help record a person’s wishes for future medical care. Having these discussions in advance can also reduce uncertainty for family members. The need for support extends beyond physical care. 

Sarit Swisa, a clinical psychologist who coordinates Nechama’s bereavement counselling services, said emotional loss can begin before someone dies. Someone with a serious illness may already be experiencing a sense of loss as their circumstances change. 

Nechama provides counselling within the Jewish community, although the service isn’t religious. Its counsellors make space for clients’ feelings, beliefs, and experiences. “It’s actually the hard work of just being present for people in some really challenging periods of life,” Swisa said. 

The panel also highlighted that serious illness affects not only older people. Rod Bloom became involved in paediatric palliative care after his 14-year-old son, Rowan, died from Ewing sarcoma. Bloom said he hadn’t understood what palliative care meant when his son had reached that stage of treatment. 

His family was eventually able to arrange a nurse and hospital bed so Rowan could spend his final days at home. His experience led him to establish the Rowan Bloom Foundation, which is working towards creating a centre for children requiring palliative care. 

Bloom said paediatric care presents particular challenges because the entire family is affected. “The whole family needs to be held,” he said. “Parents are involved, as are siblings. There’s a whole lot of dynamics involved when it comes to a dying child.” 

Rafaela Joffe Peerutin, chair of the Soul Carers Network, added another layer to the picture. Soul Carers provides support around the spiritual and existential aspects of dying. This can include questions about meaning, suffering, faith, fear, and what a person wants at the end of life. 

The aim isn’t to replace medical care, but to ensure that the person’s emotional and spiritual needs are recognised. “When we talk about total pain, we don’t just talk about the physical pain,” Joffe Peerutin said. “We also talk about spiritual pain.” 

The webinar’s central message was therefore less about defining palliative care than about encouraging people to become familiar with their options before they urgently need them. 

For the Cape Town Jewish community, a range of services already exists across medical, emotional, practical, and spiritual care. The challenge is knowing where to turn and having the conversations early enough. As Barnett said, the aim was to begin that conversation “before the crisis”.