Death is something most of us try to ignore. Yet for those working for hospices, dealing with dying people and their families is part of their daily lives.
‘Many people shy away from hospice work because they don’t want to face their own mortality,’ says Dr Liz Gwyther, who heads the Hospice Palliative Care Association (HPCA).
‘In this age of high-tech medicine, death is often seen as a failure. But we are all going to die, and if we can help a person to have a comfortable, dignified death, that’s a huge achievement,’ says Gwyther.
A medical doctor, Gwyther became interested in palliative care when she realised that her medical training had not prepared her to manage pain and deal with dying people. She has since successfully lobbied all medical schools to ensure that their undergraduates are taught end-of-life care.
‘Medicine focuses on cure, but palliative care is important when there is no cure for a person’s condition. I realised I didn’t know how make a person with severe physical symptoms comfortable or to counsel a person and their family in emotional distress,’ says Gwyther.
The HPCA has 73 member hospices and hundreds of dedicated nurses and carers all over the country, mostly looking after patients in their own homes.
Sister Sibongile Mafata, co-ordinator of the Mofolo Hospice in Soweto, says her hospice with its network of 33 community carers offers holistic care.
‘We look at the person in totality. It’s unlike a hospital. We look at the physical problems. We look at the social problems. At times the person becomes too ill because of the social problems. We look at the psychological problems. We look at the spiritual problems,’ says Mafata.
To outsiders, it appears to be a heart-breaking job. But Sister Stella Thackray, who has worked at Highway Hospice for the past 25 years, describes her work as ‘the kind of nursing you dream about’.
‘It’s all about the patient and making the patient happy. And it’s free and it was multiracial from the start, when all other health services were segregated,’ says Thackray, who came to South Africa from Scotland many years ago.
‘Every day is unbelievable. It’s been an absolute privilege to spend time with these brave, wonderful people,’ adds Thackray.
Her own father spent his last days in the Durban hospice – the country’s first hospice – after being diagnosed with cancer.
The Highway Hospice has eight beds for patients, but most hospices administer care in patients’ homes as it is extremely expensive to run an in-patient facility.
Gwyther says the ideal would be for hospitals to make beds available for patients at the end of their lives, and HPCA has trained a number of public health nurses countrywide in palliative care.
‘It’s an exciting time to be involved in hospice as we’re trying out all kinds of different approaches. For example, Stellenbosch Hospital has made beds available for palliative care but we pay the salary of the nurse,’ says Gwyther.
HPCA’s goal is to set up a hospice in all 53 districts of the country, and Gwyther is adamant that hospices need to be integrated into the health care system so that they can form part of the normal referral system for patients.
Hospice has played a pivotal role in the HIV/AIDS epidemic, particularly during the years of government’s reluctance to provide antiretroviral (ARV) medicine to people with AIDS.
‘Before ARVs, AIDS patients were discharged from hospital, and many were told bluntly to go home to die. The burden of care was transferred to their families, who were emotionally drained, economically challenged and had no nursing experience,’ says Gwyther.
Hospice workers were often the only support AIDS patients’ families had, and would supply pain relief, latex gloves to protect family members and emotional support to those forsaken by the health system.
The introduction of ARVs into the public health system has made a substantial difference to the work of hospice ‘ but the bulk of its patients are still those with HIV/AIDS.
The vast majority of Sister Theresa Hlongwa’s 230 patients in Umlazi, Durban, are living with AIDS, while Sister Vicky Sikhosana, who deals with a similar number of patients just south of the city, says over 90% of her patients have AIDS-related conditions.
In the three years that Hlongwa has worked on home-based care for Highway Hospice, about 300 of her patients have died ‘ mostly because they have sought help when it was too late.
‘It is very depressing when they die because you get used to the patients and they talk to me as if I am their own mother,’ says Hlongwa, who works with eight community carers.
She depends on a monthly support group meeting of all hospice workers to help her deal with the sadness.
‘ARVs have made a big difference. At first when they start on ARVs, patients complain but then they get well and continue being well for some time,’ says Hlongwa.
‘I have one patient, a woman of about 36 years old. When I found her about two months back, I thought she wouldn’t live for a week. She wasn’t eating, her hands were spastic and her feet were so painful the carer couldn’t wash them.
‘We tried medication to alleviate the pain and then her feet could be washed. She has started ARVs and she now gets out of bed and can walk to the sitting room. She has recovered so remarkably. That makes me feel so good.’
The introduction of ARVs has meant that a number of critically ill patients are well enough to be passed back into the care of their clinics.
But for those still sick, hospice workers represent their interests not only in health matters but also in trying to get social grants for them, giving out food parcels and helping their families with income generation.
‘The hospice workers act as a voice for patients when they are at their most vulnerable,’ says Gwyther.
Death is a great equaliser, and at the end of a person’s life ‘ no matter what their social circumstances ‘ what is important for everyone is ‘the relationships’, says Gwyther.
‘We are privileged to be able to help build these relationships and be included in loving families at the end of a person’s life.’
**Research for these articles was made possible by a grant from the Open Society Foundation of SA.