Educational Media Reviews Online

In the fall of 2010 I spent a small amount of quality time with a visiting South African physician, Thembi Xulu MD. Dr. Xulu is a clinical director of an organization called Right to Care, dedicated to improving access to safe, effective and affordable treatment for people living with Human Immunodeficiency Virus (HIV)/Acquired Immunodeficiency Deficiency Syndrome (AIDS) and Tuberculosis (TB), in particular antiretroviral (ARV) therapy. The focus of my time with Dr. Xulu was to enhance her research experience. Frankly, I did not spend much time thinking about the ongoing South African HIV/AIDS epidemic and the societal implications of the terminally ill living longer and millions of orphaned children.

It may sound like a cliché, but I am no longer the same person I was before my first viewing of Song of the Soul: Stories of Hospice in South Africa. This compact documentary on hospice activities in South Africa’s under-developed township communities spares no detail with appalling evidence of a crisis. Yet there is also stubborn optimism and hope in equal measure, and the resources of the production team bring viewers into intimate contact with community health workers, social service providers, and many tragic and dignified survivors of an epidemic that has decimated a generation of adults, leaving the oldest, their aged parents, to care for the youngest.

The film’s introduction briefly samples the opinions of several visiting American hospice experts who assert that they are the students in a land of battle-tested community health experts. The film launches into learning about South African palliative care, trust between care-givers and patients, and how to provide systematic intergenerational care with a minimum of financial resources. South Africa is a country where, according to a palliative care association spokesperson, there are 5.2 million HIV positive patients identified so far in a population of estimated at about 50 million, or more than 10% of the population.

The first section of the film, “Sister,” presents the frontline activities of the Soweto hospice movement and the substantial regard and impact the hospice team workers have in their distressed communities. The audience follows an accelerated day in the life of Sr. Cathy Thomas, the founding matron of the Good Shepherd Hospice, Middleburg. Viewers travel through scenic fields and descend into a dusty, impoverished Soweto township, so that Sr. Thomas can meet up with an energetic and upbeat nurse, Florina Dimakatso Xulu, providing care for an AIDS patient. A Soweto hospice coordinator, Sibongile Mafata, describes the holistic orientation of their palliative program and the multidisciplinary team approach that is taken. Viewers will see the team discussing cases and examples of the deeply committed human connections; in spite of more that dozens of tribes and languages. For those unfamiliar with the hospice concept, one of the American visitors adds, “You have to think of hospice as like a net. It can be pulled very tight underneath families and patients when they need it and then loosened when they don’t.” The hospice in many communities is the only regular health care system and functions like a clinic for patients to get tested or receive medications, while also serving as a base for home visits into the surrounding community.

The next section of the film, “Stigma”, initially presents a testimony of one young female patient rejecting the culture of secrecy, publicly acknowledging her HIV positive status in a support-group setting and on camera. Yet this is followed by several speakers from the care community testifying to the persistent AIDS stigma that still exists. Fear or embarrassment often motivates families to hide the sick members of their family, yet the aggressive community hospice workers act on their suspicions with tenacity and compassion for the ill, because, as a nurse states, “ you can’t just treat the physical. For us the emotional and spiritual is very, very important.”

Considerable public knowledge is demonstrated about measuring the effectiveness of ARV therapy with the CD-4 blood test, and several patients talk about the correlation between a greater CD-4 count and their re-entry into society and the hope they feel. But even this good news is couched in the context of poverty, in particular the absence of jobs for those with restored health. The most glaring and unhelpful paradox at the moment is an apparent South African government policy to let CD-4 counts dictate whether some households get social welfare grants. If health improves and the CD-4 count rises above 200, the grant is withdrawn. Some patients without employment fear losing the grant and deliberately reduce their medication to keep their only income to put food on the table, in spite of the decline of health.

The section “Scarcity” focuses on the township economic crisis and the absence of employment opportunities for recovered patients. The widespread poverty breeds the conditions for the spread of HIV. The hospice team is as concerned with basic nutrition as with palliative care. HIV care is accompanied by food packages for those without money for food. One patient and his nurse reenact how he had to summon up the courage to say he was hungry.

The film section “Grannies” presents the reality that most community deaths of all types are dominated by those between the ages of 16 and 49, with at least 1.2 orphans being cared for by aged grandparents. Both children and their grandparents speak on camera, and there are even teenage children that themselves have become AIDS patients. Because of the delay of HIV symptoms, as one caregiver states, “Before you know how to prevent yourself, it’s already too late to start.” The film briefly flashes a stark scene of traffic jams in cemeteries, the result of 12 simultaneous funerals on a single Saturday. Then the grandparents are left to stretch their old-age pension as the only income for their grandchildren.

The final section “Lerato,” meaning “song of my soul” or “love,” shows how the South African hospice movement has stretched the definitions of their program, such as daycare for the overwhelming number of orphans and children of patients who are not well enough to care for them. A small child named Lerato is embraced by the hospice to regain her voice and spirit, demonstrating the additional holistic goal of the hospice movement to prevent a lost generation and create responsible citizens. A remorseful adult reflects on the unfair world adults have created for the current generation of parentless children, in stark contrast to joyful singing by smiling teens in a formal choir. It is clear that there is no giving up among the modern South African hospice movement.

The superior camera work and audio capture of both public scenes and intimate personal reflections demonstrates how advances in light, portable high definition camera and field audio recording technology can yield dramatic results. In spite of the fact that most recorded speakers are speaking English, there is effective English captioning to assist the viewing audience. Many of the hospice care-givers speak softly, yet their words and emotion are easily amplified and heard. The spiritual aspect of the land is most often presented with singing, the isicathamiya or a capella choir of young voices, bursting with hope above the tumultuous nature of daily living with death and life.

Song of the Soul: Stories of Hospice in South Africa is highly recommended for all public, academic, and school audiences seeking to understand the power of a holistic hospice movement in South African townships to change a culture of secrecy and death into a culture of hope and life. Other cultures have much to learn from this story of persistent embrace of adversity and death with dignity.