If you were terminally ill, you would want to be relieved of pain, made as comfortable as possible and comforted in tranquil surroundings.
The need for hospice care for the terminally ill is huge, and ever-increasing. How do hospices operate in South Africa?
Many South Africans need hospice care or counselling when they are terminally ill. In the year from March 2006 to April 2007, 62 991 patients were cared for at the 73 member hospices in South Africa – both as in-patients and out-patients. Of these 49 566 (78%) were HIV/Aids patients.
The need for the service the hospice provides, is increasing drastically. The incidence of cancer is expected to rise by a staggering 400% in Africa during the next 45 years, according to the Cancer Association of South Africa (CANSA). The reasons for this increase are mainly due to an ever-ageing population and the widespread adoption of western lifestyles with urbanisation. In real terms, this would mean that within half a century, the number of annual cancer diagnoses in South Africa could soar from approximately 100 000 to half a million.
In the past, the main focus of the hospice was on the care of cancer patients and their families, but the enormity of the HIV/Aids epidemic has resulted in the adaptation of the traditional hospice model to conditions in South Africa. At least eight hundred people die daily of HIV/Aids in South Africa, according to statistics provided by the Hospice Association of South Africa (HASA). And this number is growing.
Who are those in need of hospice care?
Many patients who are terminally ill, with diseases such as cancer, Aids, motor neuron disease or multiple sclerosis, are cared for at home. They require constant physical care and emotional support.
”However, cancer and Aids are long, hard illnesses and take their toll on families who are taking care of patients," according to Priscilla Nelson, head of the counselling unit at St Luke's Hospice in Cape Town.
“Therefore many patients come to a hospice for a fixed two-week period in order to provide some family respite. Unless conditions at home are particularly far from ideal, for instance if patients have no privacy at all, or there is no one to take proper care of them, most patients prefer to return home after the two weeks."
A patient seldom stays at a hospice for a period longer than two weeks at a time, so the general public perception that people go to the hospice to die, is far from correct. Most of our patients choose to die at home and not in a hospice ward.
What type of care does a hospice provide?
A hospice provides palliative care. According to the World Health Organisation (WHO), "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, the early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual".
The goal of palliative care is the achievement of the best quality of life for patients and their families. It is positive, planned and purposeful and focuses on living actively while dealing with the effects of illness.
Hospice is not a place, but a philosophy of care and therefore can be taken to the patients wherever they are … at home, residential care, frail care and hospitals.
Hospices extend care and counselling to the families and loved ones of these patients, in order to help them through bereavement and to make plans for the future - but only if requested to do so.
What people often forget is that the patient is the chief mourner. He or she is about to lose everything, and yet the patient's concern is usually mostly for those who will be left behind.
How do the hospices provide these services?
At St Luke's Hospice, for example, palliative care is offered by a team comprising of doctors, professional nurses, therapists, social workers, spiritual counsellors and volunteers. Support is given to families by trained bereavement counsellors for up to 13 months or longer if necessary, after the death of a loved one. Services are provided to all people in need, regardless of their ability to pay, or of their class, colour or creed.
St Luke’s Hospice Community nurses visit patients in their own homes. These nurses liaise with the hospice doctor or the patient's own doctor in order to combat pain and distress. They also teach families basic skills needed to make the patient comfortable. Volunteers undergird what is done by the professional staff and form a crucial part of the team.
There are also 12 day hospices situated in the different communities. Patients meet at day hospices once a week to interact and learn new hobbies and interests. They will often also be seen by the nurse, the social worker or the doctor. Guidance is given in planning the future care of potential orphans and grandparents are empowered with knowledge and skills.
Hospices in South Africa
Hospices worldwide adhere to the same principles, but are run as separate organisations. For example, in the greater Cape Town area, St. Luke's hospice cares for 883 patients on a daily basis with the help of 99 full-time staff and over 330 volunteers. A few (maximum 40) are cared for as in-patients, but most of the patients are living at home and are cared for by community nurses.
Hospices are not government-funded and therefore have a very active fundraising department. In the case of St Luke’s hospice, the generosity of various organisations and individuals over the years in Cape Town has contributed much to keeping it going. The Provincial Administration of the Western Cape does contribute to the cost of home-based HIV/Aids care, but not to the other projects of the hospice.
"Many people want to make some contribution, but feel they are not cut out to deal with patients who are terminally ill. Many of our volunteers never see a patient – they are involved in many other activities, ranging from counselling, to fundraising, to admin work, to gardening and dealing with finances," according to Nelson.
For more information, contact St Luke’s Hospice 021 797 5335 www.stlukes.co.za or
Hospice Palliative Care Association of South Africa (HPCA) on (021) 531 2094 www.hospicepalliativecaresa.co.za