Hospices prove they are not centres where people just go to die

To many people the word ‘hospice’ is associated with death.

But to a 40-year-old Portia, who lives with neuromyelitis optica, also known as Devic's disease —  a rare condition where the immune system damages the spinal cord and the nerves of the eyes — this perception changed after she had her health turned around at a Johannesburg hospice.

When she was admitted to HospiceWits, shortly after being discharged from Chris Hani Baragwanath Hospital, she couldn’t walk, was bedridden and had a tremor. But thanks to a multidisciplinary team that cared for her and helped her to manage her symptoms, including pain management, massages, exercises, and psychological and spiritual support, Portia gradually recovered and was able to get out of bed each morning and slowly move around the house. Later she was able to bath herself.

Today she has not only regained the use of her limbs and is able to clean her house, but she can drive again — thanks to the support that she received at the Johannesburg hospice.

“She is attending her appointments at the hospital and taking her own treatment without any guidance. Palliative care intervention improved the quality of life for this patient. The patient feels more in control, she gained weight and is now living a normal productive and meaningful life,” said the hospice.

CEO of the Hospice Palliative Care Association (HPCA), Ewa Skowronska, says the story of Portia is just one of the multitude of success stories. While palliative care is often understood to be solely care for the terminally ill, Skowronska says this is not so.

During the Covid-19 pandemic hospices saw a spike in admissions as hospitals buckled under pressure due to rising numbers of patients. Skowronska said during the pandemic many medical professionals became more aware of the need for holistic healthcare for patients with life-threatening diagnosis. They started to work more with hospices and palliative care centres not just for the benefits afforded to patients, but for the support it provided to healthcare workers too as they saw unprecedented numbers of deaths.

Palliative care will be in the spotlight from May 1-7,  National Hospice Week —  a period that highlights the importance and nature of palliative care. Multidisciplinary teams at hospices such as medical doctors, professional nurses, social workers, spiritual carers and home-based carers not only deal with physical symptoms, but also with psychological and spiritual needs of patients to ensure holistic healing.

“The team works with the patient’s own specialist or oncologist to ensure quality of life for patients who have been diagnosed with life-limiting illnesses as well as to prevent and relieve unnecessary suffering.”

Hospices deliver palliative care in three main ways — home-based care for those who prefer or can be treated at home, hospice community centres or day care centres for those who are able to travel to central points, and inpatient units for around-the-clock care.

According to Leigh Meinert, the advocacy and operations manager of the HPCA: “Despite the holistic care that palliative care provides, and the flexible nature of the services, we unfortunately often hear of patients referred to (centres) very late in their disease progression. This essentially deprives individuals of the quality of life that might be possible when facing a life-threatening condition.”

A Somerset West GP, Dr Mark Hosking, who works closely with Helderberg Hospice in the Western Cape, considers himself one of the “exceptionally fortunate to confidently work with hospice for many years”.

“The hospice allows me to easily co-ordinate care in the patient’s home that is professionally supervised by skilled nurses with a strong knowledge of palliative algorithms. This care then migrates from patient care to family care. It is 24 hours a day, seven days a week, and my patients feel very supported by this broad-based, wraparound support.”

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