When you strip down palliative and hospice care to the basics, it’s about providing physical, emotional and spiritual comfort for patients and support for families.
Suncoast Hospice, a member of Empath Health, is proud to continue our almost twenty-year partnership with our sister hospice in Soweto and Johannesburg, South Africa – HospiceWits. We host staff exchange trips and share stories, best practices and resources in support of care for our communities.
HospiceWits’ CEO Jacqui Kaye and sole social worker Penny Mathe recently returned to Empath Health for a two-week visit. Their host was Stacy Orloff, Empath Health’s Vice President of Innovation and Community Health and leader of the partnership committee. They spent time with our staff, volunteers and teams at luncheons, meetings, presentations and recreational activities.
Not provided any government funding, HospiceWits heavily relies on donations to keep their operations running. Due to little funding, they had to close their daycare center for children and their inpatient care unit (IPU), which they aim to reopen. Empath Health gives our support through payroll deductions, fundraisers and donations of much-needed medicine and medical supplies.
A Conversation about Care
Kaye and Mathe wrapped up their trip participating in a panel discussion with Empath Health’s Director of Spiritual Care Jim Andrews, Director of Social Work Practice Susan Bruno and Vice President of Excellence and Compliance Laura Mosby, who moderated. They focused on similarities and differences around our cultures, care, death, dying and grief.
Here are highlights from their conversation:
HospiceWits: Mainly HIV and multiple drug-resistant tuberculosis
Suncoast Hospice: Mainly cancer, Alzheimer’s and other dementia
Attitudes and Choices
Andrews: We highly value individual rights, freedoms and self-determination. We recognize and honor a patient’s right to choose whether or not to receive treatment.
We are people of faith. There is a strong sense that life is precious. Hospice care has been an uphill battle for people. We are a death-denying culture.
Kaye: I don’t think we have as complicated a decision. If a patient is ill and needs care and comfort, we give it to that person. They (patients) receive palliation (comfort measures), respite and pain management in their home or in our IPU. They can move from one to the other.
Kaye: In-home care is 85% of what we do. That’s what we do best. We have an IDT (interdisciplinary team) with a whole team effort.
Mathe: There are 23 of us on the team in Soweto. My work typically is to put out fires. I assist people with HIV/AIDS grant applications and getting their birth certificates and IDs. I get food to people who are hungry and link people to other services.
We are piloting the reopening of our IPU. As staff, we volunteer our time there starting at 7 a.m. We assist with the housekeeping, laundry, linen and kitchen. And we help patients with healthy living, exercise and dispensing of pre-packed medications.
Spirituality, Death and Grief
Bruno: Formalized religion and rituals have changed. Funerals and memorial services have a purpose of healing and community, coming together to support individuals in their bereavement and mourning. That has been going down. People don’t want loved ones to mourn so they won’t have a service. Loved ones struggle with the lack of closure. That’s a trend we see in our hospice care. We counsel on that and talk about opportunities to receive assistance.
Andrews: We expect people to grieve at light speed. We feel like we’ve got to get back to work and doing things, and we don’t always process the death.
Mathe: In Soweto there are 11 tribes who speak 11 different languages. When it comes to African people, most of us believe that our ancestors are the ones who are representing us and talking on our behalf to God. We tend to believe in witchcraft and we don’t accept that children should die. We believe that when elders die, they will move on to be with the ancestors.
When a person dies, the family will shut out the social workers. We have to stay away from their business. We see that as their sacred space.
Then the community takes over for one week from morning to night. They go in and out of the house. If a wife dies, the husband has to wear a tiny piece of black cloth on his sleeve. If a husband dies, everything should be moved from the house and a space should be made on the floor for the wife. A blanket is placed over her head so people see that there is a death in that family. She has to wear black clothes for one year and be home before sunset because if not, it’s believed it will bring bad luck for that family.
If someone dies in our IPU, a main family member will carry a branch, ask where the person died and talk to the spirit of that loved one saying to go home to his or her final resting place. And the branch is taken home. If not, we feel the place will be haunted with that person’s spirit.
Kaye: We don’t turn away anyone, regardless of their financial circumstances. Medical aid (similar to health insurance) is expensive. For funding, we have thrift shops and a palliative center to train private hospitals’ nurses about palliation. We are looking at partnerships with other hospices to open up our umbrella, look at resources and work together.
Andrews: We are very privileged funding-wise. Our regulations drive requirements for our care but not our standard of care. We do not want to lose sight of the human and compassion.
Andrews: Google increasingly informs our population about medical care and illnesses. In the near future, we will see an increase in the use of telehealth for diagnoses and treatment of ailments.
Kaye: We started a death café. It’s like a support group. We try to demystify death.
Bruno: We see grief counseling and groups run on the internet. The feedback is very positive because people like anonymity. They can still have conversations but not be visible.
Click here to learn more about our HospiceWits partnership and make a donation to support their care. Thanks for your support!