I2-YEAR-OLD Nomsa (not real name) was often late arriving at school. She was also absent from school every week and when in the classroom appeared very sad and distracted.
Nomsa’s teacher was worried and called her aside to find out what had brought about the change in her behaviour. Nomsa explained that her mother was very sick, but also reluctant to go to hospital for treatment.
She was frightened as her mother’s condition was getting worse each day and she cried out in pain often. Nomsa told her teacher that she was struggling with the burden of caring for her mother.
The teacher, sought permission from the headmaster to visit Nomsa’s mother. When she arrived at their house, she was saddened to find Sihle, very sick and groaning in pain. Sihle said she had cancer. Having received palliative care training from Island Hospice & Healthcare (Island), the teacher recognised that Sihle had a life threatening condition – cancer – and needed help. The teacher explained the work of Island and Sihle was referred to Island for support.
When Island nurse Busi visited Sihle at home, she found her with extensive festering Kaposi Sarcoma lesions.
Her feet were very swollen. A cancer Kaposi Sarcoma is caused by a virus called Human Herpes Virus type 8 (HHV8) which is common among HIV+ patients.
Sihle was wasted and bedridden. She was covered with wounds that smelled like rotten fish. She was in severe pain which she rated as nine out of 10 (0 being no pain and 10 being the worst possible pain.) She was unable to lift up her feet and did not want anybody to touch her.
On checking Sihle’s medical records, they revealed that she had visited the Kaposi Sarcoma Clinic at one of the major referral hospitals in the country where she presented with scattered lesions on both legs.
At the clinic, she had had further investigations which revealed that she was HIV positive. Sihle told Busi that she was devastated by the information about her illness and she thought that it was no longer necessary to be treated. She had lost all hope of living as she felt that a diagnosis of two life threatening illnesses – cancer and HIV – meant death.
As the lesions grew and became visible Sihle withdrew from all her friends and relatives to the extent of moving from her rented accommodation to a place where people could not locate her. She also changed her phone number so that no one could reach her.
She was battling with questions about her existence, the purpose and meaning of her life and expressed anger and feelings of hopelessness as she related her story.
She shared with Busi that she was overburdened with multiple problems. Sihle was an orphan, a widow, and had no close relatives except her one and only sister who lived in South Africa. Sihle was also struggling financially as she had lost her job due to her illness.
The first immediate intervention provided by Island was to manage Sihle’s physical pain. Busi explained to Sihle about her condition and the need for hospitalisation. Sihle was admitted to hospital where she was treated. This included wound management, pain management, cancer treatment, HIV and Aids treatment, counselling and physiotherapy. The hospital chaplain (a spiritual leader) visited weekly to provide spiritual support.
During the counselling session in hospital, Sihle said her major concern was her daughter who had remained alone at home while she was in hospital.
Sihle was bottling up her worries and anxieties and whilst she tried to keep up appearances to please her daughter, she was very anxious on the inside. An Island social worker explained the need for her to express her fears and feelings and to just to let it out.
On exploring her support system she mentioned that she had friends and a sister who lived in South Africa. When Island contacted a friend to inform her that Sihle was in hospital, she came to visit her.
The friend showed concern, care and sensitivity to Sihle’s needs and offered to take care of Nomsa while she was in hospital. Her sister in South Africa assisted her financially following contact from Island social workers.
Sihle stayed in hospital for three months after which she was discharged. Her condition had improved as she was able to walk on crutches. The wound improved. Island community caregivers trained on how to provide basic palliative care support were assigned to dress the wound daily and her friends assisted with house chores. Sihle’s neighbour offered to monitor adherence to medication. Sihle visited the Kaposi Sarcoma Clinic once a month for treatment and review. Island facilitated this support for Sihle.
While at home Busi together with an Island social worker continued to visit Sihle at home to manage the pain and provide counselling for Sihle and her daughter. During the ongoing counselling sessions at home, there were discussions on how to deal with the unavoidable periods of stress and anxiety. Sihle was gently encouraged to confront these emotions and helped to find ways to cope with the challenging times she was facing.
Gradually, Sihle was taught how to slowly carry out home chores. Before her illness Sihle was a hairdresser and as she began to feel better she started taking on small jobs of plaiting people’s hair which she was paid for. Nomsa’s teacher continued to provide support to Nomsa at school. Sihle’s condition continued to improve and she was able to walk and care for herself.
After nine months Sihle was pain free and her wounds had healed. Spiritually she was stronger and she continued her counselling sessions with the social worker.
After a year of support from Island, Sihle relocated to South Africa together with her daughter to stay with her sister for the purpose of close monitoring and support. Every six months she travels for review at her local clinic. Now she is back at work at a salon in South Africa and Nomsa is doing well in school.
The staff from Island Hospice & Healthcare ensured quality holistic care was provided in line with Sihle and her family’s needs.
All team members involved worked diligently in their different roles to help Sihle recover and be able to fend for herself and her daughter again. The approach improved the quality of life of Sihle and her daughter.
What is Palliative Care & where can you get help?
Palliative care is an approach that improves the quality of life of patients and their families facing problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and assessment and treatment of pain and other problems, physical, psychosocial and spiritual.
Palliative care should begin at diagnosis of a life threatening illness. Palliative care is required for a wide range of diseases for adults and children. For adults this includes cardiovascular diseases, cancer, chronic respiratory diseases, AIDS and diabetes.
Many other conditions may require palliative care, including kidney failure, chronic liver disease, multiple sclerosis, Parkinson’s disease, rheumatoid arthritis, neurological disease, dementia, congenital anomalies and drug-resistant tuberculosis. Island Hospice and Healthcare provides quality palliative care services and support to those patients and clients with life threatening illnesses and the bereaved through comprehensive direct care.
For more information about Island Hospice & Healthcare visit: <http://www.islandhospice.care.
The writer is a Palliative Care Nurse, Island Hospice & Healthcare