In a nation of 56 million, South Africa possesses the world’s fourth highest HIV/AIDS prevalence rate, with 18.9 percent of adults living with HIV/AIDS. It is consistently a leading cause of death in South Africa; in 2016, there were 110,00 deaths due to HIV/AIDS.
Managing terminal illnesses such as AIDS can often necessitate hospice or palliative care. The World Health Organization estimates that 40 million people each year need palliative care and only 14 percent actually receive it. From March 2006 to April 2007, 78 percent of South African hospice patients were HIV/AIDS patients.
Hospice care in South Africa remains “severely neglected,” as it is usually not state-sponsored, nor is there adequate higher education, training or personnel devoted to it. Hospice care in South Africa tends to rely on private funds.
In South Africa’s Western Cape Province, Knysna Sedgefield Hospice has provided palliative care to patients and emotional support for family members of patients since 1986. Providing palliative care and daycare for patients and bereavement care for their families rests on the shoulders of volunteers and is supported by donations.
Where children of patients may receive play therapy sessions, Knysna Sedgefield Hospice benefits from a rather noteworthy type of foreign aid: music and cultural appreciation from 14,000 km away.
In Chicago, Northwestern Medicine Hospice DeKalb’s music therapy program convenes percussion ensembles in its annual Transformation Through Rhythm concert, in which half of the proceeds are donated to Knysna Sedgefield Hospice. The other half is allocated to Northwestern Medicine Hospice’s music therapy program.
The event also hosts the sale of handmade African beaded jewelry, and 100 percent of that revenue goes to Knysna Sedgefield Hospice. In past years, Transformation Through Rhythm has delivered 67 boxes of food and raised R11,417 ($949) for hospice care in South Africa.
Northwestern Medicine Hospice DeKalb is the sister hospice of Knysna Sedgefield Hospice. Since spring 2004, Northwestern Medicine Hospice DeKalb has participated in the Twinning Initiative, part of the Foundation for Hospices in Sub-Saharan Africa (FHSSA). FHSSA is an organization founded in 1999 to furnish resources and technical support for hospice organizations in sub-Saharan Africa.
Though Knysna Sedgefield Hospice does not explicitly endorse music therapy as a service, it is a common practice in general hospice care. Music therapy in hospice care tends to come in the form of singing, the playing of an instrument such as a guitar or piano, or playing a favorite song of two loved ones to promote relaxation and non-verbal connections.
The Borgen Project caught up with Jen Conley, licensed music therapist at Northwestern Medicine Hospice DeKalb, to learn more about her work in hospice care. “Hospice care is a particularly vulnerable time,” she says. As she “plays quiet, gentle harp music” she can “elicit emotion from the most stoic person. I can have someone completely nonverbal squeeze a hand or tear up. There may be some settings I do one song. The next 40 minutes are spent talking, grieving and sharing memories.”
On the transactional benefits of music therapy, Conley says, “If someone can say ‘thank you,’ ‘I remember,’ or ‘I love you,’ that can help with the bereavement process.”
Board certified neurological music therapist Angela Stephenson says, “Being a part of someone’s end of life process is a remarkable experience in that it becomes your job to be the presence that the patient needs. Sometimes, that looks like validating their anger and sadness, other times it looks like providing them with encouragement and spiritual support.”
Regarding the effectiveness of Transformation Through Rhythm, Conley says, “I believe this concert has resulted in other people volunteering.”
This year’s event, the seventh annual Transformation Through Rhythm concert, featured ensembles from the DeKalb High School Percussion Ensemble, the Harambee African Percussion Ensemble and the Northern Illinois Percussion Studio. Be it through a fundraising vehicle or direct cathartic care, the sound of music supports hospice care in South Africa.
– Thomas Benjamin