October 13, 2008

Children with Life-Threatening Illnesses Happy with Hospice Care

HIV Positive Orphaned Muppet Cheers Soweto Hospice Pediatric Patients

Ironically, many children experience some of the happiest moments of their lives just before they die, because they’ve received appropriate nutrition, pain control, medical care and a lot of counseling and loving attention, explains a Soweto Hospice pediatric doctor commemorating World Hospice and Palliative Care Day.

Supported by USAID with funding from the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR) and other groups, Soweto Hospice has engineered one of South Africa’s first children’s units to provide specialty care and reduce suffering endured by youngsters with life-threatening illnesses, including AIDS and cancer. 

Hospitals address huge populations of children and treat diseases.  Hospices focus on patients and see their mission as treating people, individually—often with chronic illnesses—with compassionate care and medication.   

Without access to the care they need, people suffer horrific and unacceptable levels of distress that amount to a violation of their human rights.  Hospice fills the gap by relieving suffering physically, emotionally and spiritually, performing vital work on the front line of caring for people who face the end of life.

Many chronically ill children fall through the cracks after being sick for a long time and reaching the end of their road.  General hospitals have little, if any, support to offer such children.  Professional Hospice personnel can and do look after these desolate little ones. One doctor recalls a stern lecture from the 10-year-old son of a domestic worker who said, “Treat me as a person, not a patient.”  The youngster chronicled his life at the Hospice.  The staff value the journal as a reminder of their commitment to each and every child entrusted to their care.  They also treasure the memory of 12-year Lebo (not his real name) who lost his battle with AIDS a few months ago.  His most precious hand-drawn pictures are self-portraits showing a happy, healthy, smiling boy. 

Soweto Hospice offers a wide range of life-saving and love-giving services from a multidisciplinary team of doctors, psychologists, social workers, nurses, and case workers, along with a palliative care unit, pediatric unit, home-based care, a palliative care driver, volunteers and many more resources available to children and their families. 

Palliative care aims to improve the quality of life for people living with and dying from a terminal illness by preventing and relieving suffering through expert pain and symptom relief, as well as practical help for mental stress and support for family members.  The Hospice has revolutionized reaching community residents by training staff to administer care at patients’ homes, also teaching family members effective ways of supporting the efforts and preventing further vulnerabilities.  Mothers or guardians, for instance, learn proper nutrition and hygiene to improve health and the living environment and reduce the risks of spreading or contracting infections.

The home-based care approach has proven tremendously successful for Soweto Hospice who now devotes
70 percent of their resources for care in the patients’ homes and 30 percent at their Diepkloof in-patient ward.  A number of patients who arrived at the Hospice to die walk away alive after gaining expert care and medicine.

Adult patients can also participate with Soweto Hospice’s skills training program.  Children of patients are thriving at a unique early child day care and development center established by the Hospice in the nearby Mapetla suburb. 
                                                                                               
Since Hospice and palliative type care is about comforting those with life-threatening diseases, South Africa’s popular Takalani Sesame television and radio character named Kami—created as a five-year-old orphan who also happens to be the world’s first HIV positive Muppet—visited Soweto Hospice and the Mapetla Daycare Centre for World Hospice and Palliative Care Day (observed officially on October 11).  Sick children and well children were delighted to spend time with the positive role model who inspires them in practical ways to live happily ever after.

USAID was also instrumental in supporting the development of Takalani Sesame and Kami in South Africa.   

END

Further information is available from Reverie Zurba at USAID:  (012) 452-2000
Or Samantha Atrash, Hospice Association of the Witwatersrand:  (011) 483-9100