By Roxanne Reid, December 2007

Palliative care helps the terminally ill – and their families – cope

Lerato Mkadimeng, 30, of Soweto watched helplessly as her cousin faded away. Cathrine, 43, slept a great deal. When she was awake, however, she often seemed angry and would shout and swear when Lerato tried to feed or wash her. Confused and suffering from memory loss, she'd say things that made no sense. Cathrine was dying of HIV/Aids. A mother of four, she was diagnosed in December 2004 and had been on a roller coaster of illness and recovery for two and a half years. By June this year, she was just skin and bone, had painfulsores on her body and no reserves of energy.

Her family barely recognised her. Gone was the active, house-proud woman. In her place was a befuddled, lethargic shadow of her former self. It wasn't easy to understand her withdrawal, her refusal to eat, her mood swings. "It was painful watching her die," says Lerato, "but she's family and she needed our help and love." Things changed for the better when nurses, social workers, counsellors and caregivers of the Wits Palliative Care team, which works within the public health service at Chris Hani Baragwanath Hospital, stepped in to assist. They visited Cathrine at home, helped to wash her, treat her putrid sores and administer medication to alleviate her pain. "Sometimes they just sat with her and talked," says Lerato. They talked to the rest of the family, too, about HIV/Aids and what to expect as the disease progressed, preparing them for the inevitable and helping in any practical way they could. Early in August, a very weak Cathrine, suffering from bouts of diarrhoea and vomiting, was admitted to a clinic to be treated for meningitis and tuberculosis, which so often goes hand in hand with HIV. She died almost three weeks later. "At last she was resting peacefully," says Lerato, who is grateful for the palliative care team's support and love. "Without them, we would have been on our own." Along the way, Lerato realised that caring for Cathrine had awakened a calling and she is now a nursing student.

A Special Kind of Care
Unlike ordinary medical care, which focuses on diagnosis and cure, palliative care gives comfort to the terminally ill and support for their loved ones. Treating dying as a normal process, it neither hastens nor postpones death. Good palliative care is multidisciplinary, calling on physiotherapists, pastors, dietitians, social workers – any resource the dying patient needs.

It can be offered in the home, at a hospital, a long-term care facility or a hospice, which offers up to 24-hour care for the dying in a homelike setting. "When treating a patient with an incurable illness, most health care professionals used to say, 'Sorry, there's nothing more we can do,' before discharging the patient," says Dr Natalya Dinat, director of Wits Palliative Care. "The palliative care movement says, 'There's everything we can do to alleviate your pain and suffering'."

Organisations that care for the terminally ill do much of the training. The Hospice Palliative Care Association (HPCA), for instance, has Centres of Palliative Care Learning in all provinces except Limpopo, North West and the Northern Cape. Its Palliative Home Based Care Level 3 course is accredited by the Health and Welfare SETA. Training is funded through the HPCA's development fund and donors. "Some palliative care and pain management training is now provided as part of undergraduate medical degrees at Wits, UCT and Nelson Mandela Metropolitan, though the quality of training varies," says HPCA Advocacy Coordinator Zodwa Sithole. To plug the gap, the HPCA has developed programmes for doctors who qualified without such training.

Among South Africa's first palliative care facilities back in 1980 were Durban's Highway Hospice and Cape Town's St Luke's. Today, the HPCA has 76 member hospices and 84 development sites throughout the country.

Palliative care coordinators in each province identify the need in the communities, develop capacity at new sites by mentoring emerging organisations, and work with the Department of Health (DoH) to integrate palliative care in the formal health sector. "Although some of our hospices have inpatient facilities, 96,5 percent of patients are cared for at home," says HPCA CEO Dr Elizabeth Gwyther.

But Dr Gwyther estimates that only about 15 percent of South Africans have access to palliative care, which means that many spend their final days in pain, without adequate support. In 2006, according to WHO estimates, 346000 South Africans died of HIV/Aids and 41000 of cancer, yet Dr Gwyther says HPCA member hospices cared for only 62000 patients. Statistics SA reports that 46 percent of people died in hospital or nursing homes in 2005, whereas 33 percent died at home. Clearly, there's room for more home-based palliative care services.

Obviously, HPCA members can't do it alone, so what is the government doing to shoulder its responsibility? DoH policy is to strengthen the primary health care delivery in communities and to partner with NGOs and others to provide home-based care.

Dr Gwyther says that this partnership translates, among other things, into government funding about ten percent of hospice running costs.

"The Departments of Health and Social Development allocate enormous financial resources to supporting NGOs," says Collen Bonnecwe, NGO Funding Director in the national DoH. Various mechanisms exist through which NGOs can apply to the government for funding. "But in reality, though government is subsidising programmes in many provinces, much funding still comes from donors and charitable organisations," says Dr Dinat. "Health care services should be delivered within the public health care sector to ensure sustainability, efficiency and equity in access, rather than outside in parallel systems."

National government is responsible for palliative care policy, which is scant. Delivery, however, is in the hands of the provincial Departments and is very uneven. In Gauteng, the Chris Hani Baragwanath project, started by Wits Palliative Care with donor funding, is now largely government funded. The Western Cape DoH has chosen to partner with hospices, identifying 11 inpatient palliative care facilities and funding 80 to 90 percent of their costs. Elsewhere, the DoH has funded replication of the Integrated Community-Based Home Care project – started by South Coast Hospice in KwaZulu-Natal – in seven other hospices and adapted it for pilot projects in Limpopo and the Northern Cape.

In Good Hands
Melanie Bastiaan was lucky to live in an area with palliative care services when her husband was dying last year. Cape Town's St Luke's Hospice is renowned for its palliative care unit, which cares for about 900 patients every day, 60 percent of them with cancer and 40 percent with Aids. "Having their care and support was like heaven," says Melanie.

Errol Bastiaan, 43, was diagnosed with colon cancer in January 2006. Months of chemotherapy followed, but by July doctors told him it had spread and referred the family to St Luke's for palliative care. Errol blamed everyone, was grumpy and rude, jumping down Melanie's throat for no reason. He refused to be practical about his disease. "I like to be positive and thought he needed to be realistic," says Melanie. "I wanted him to be prepared."

The St Luke's team reached out to Errol until he was ready to talk. "It took a lot of courage for them to break through to him, but they did it with care and patience," she says. They explained pain management and counselled Melanie and the children, providing an ongoing source of comfort and support. "We're a spiritual family, so they helped us with prayer. They were there for us 24/7, making our lives easier, giving me a shoulder to cry on."

At times when the pain subsided, Errol felt helpless and useless. The palliative care team would arrange transport for him so he could join the activities at Lentegeur Hospital, where St Luke's runs an inpatient hospice.

In December 2006, when things got really bad, he was admitted for a week of inpatient care. In January 2007, he returned to hospital, where he died the following day. Melanie gratefully took advantage of the grief counselling offered. "With their support, I didn't feel alone," she says.

The Way Forward
Lerato Mkadimeng and Melanie Bastiaan went through a very common experience, but the support they received is far from common. At least 85 percent of South Africans looking after someone with a long-term illness have no access to palliative care.

The HPCA is working to improve access by increasing the number of sites delivering palliative care and by training more health care professionals in palliative care. "We plan to have a hospice in every health subdistrict in the country by 2009 – at least 174 hospices," says Dr Gwyther. "This will provide hospice-based home care for the majority of patients." The association is also campaigning for professional nurses trained in palliative care to be allowed to prescribe morphine.

On its side, the government plans to revive a 2004 DoH working group on palliative care, but progress is slow and frustrating. Though an exploratory meeting was held in May, there is still no timeframe and no clarity on the group's aims. Former Deputy Minister of Health Nozizwe Madlala-Routledge was an informed supporter of an integrated approach to palliative care, but her departure in August left the cause without a government champion. A lot of work needs to be done at national policy level, not to mention training staff in pain relief.

The Gauteng provincial government, meanwhile, is forging ahead with its own plans. The project that was run by Wits Palliative Care at Chris Hani Baragwanath Hospital is now the Gauteng Centre for Excellence in Palliative Care and there's a five-year plan to roll it out to all Gauteng facilities. "The Mpumulanga DoH is also working with us and by May next year the model should be operational in at least one Mpumulanga district," says Dr Dinat.

Palliative care isn't something people think about until they need to – then they see its significance. "The hospice knew the right things to do and how to do them," says Melanie Bastiaan. "Everyone deserves the kind of dedicated care, support and strength they gave us."