Arebaokeng hospice in Tembisa has been providing palliative care for the terminally ill and their families for almost 20 years after founder, executive director and registered nurse (RN) Florah Modiba saw the need in her community.
“Arebaokeng” – ironically, a Sotho word meaning “let us care for the sick” – is also the name of Tembisa’s only hospice care facility, which is now facing shutdown due to lack of funding.
“Prior to founding Arebaokeng hospice, Tembisa only had home-based care organisations run by people who were not nurses. I believed that to deal with terminally ill patients effectively, an institution run by a medical professional was required. A medical professional should always assess a patient fully in order to determine their needs and therefore the intervention required.”
Arebaokeng assists patients in dealing with various diseases that require specialised care.
“Hospice care is synonymous with palliative care. It deals with pain and symptom management; with terminal care and respite care, meaning giving the family a necessary break from nursing a very ill person,” Modiba says.
Until 2018, the hospice had a six-bed unit where certain patients were cared for, and also providing home-based care. Cancer patients and those with other terminal illnesses and conditions were housed at the facility during their end-of-life phase, where complications Could be monitored and treated immediately.
Says Modiba: “With little money coming in, we were forced to close this unit and focus only on home-based care. We currently have 76 patients that are being taken care of in their own homes.”
The sudden withdrawal of funds by a donor then resulted in the facility having to retrench 22 employees, leaving 14 currently employed. Modiba fears that without a new donor or increased funding from remaining donors, more staff may have to be retrenched.
Negative community perception
Another challenge that Modiba has had to deal with over the years is the negative perception that many people have about hospice facilities such as Arebaokeng.
“People have often rejected hospice care, which then subjected their ailing family members to discomfort and pain. Many a critically ill person has been heard to say they are in so much pain that they’d rather be dead. We don’t want people to die in pain or to die from conditions that can be treated.”
Palliative care from a hospice facility works to reduce pain and discomfort, Modiba says, adding that families must “accept that we are there to help alleviate as much suffering as possible until the person reaches the end of life stage due to the progression of the disease”.
For Hospice Week from 5 to 11 May 2019, Modiba’s dream is to reach as many people as possible in need of their services. Hospice Week highlights the role of providing care support to those with life-threatening illnesses while giving their families support at this emotional time. Activities during this week are designed to acknowledge and celebrate the achievements of hospice and palliative care programmes and educate the public about the invaluable service a hospice facility provides for entire families during life’s last stages.
A global movement, hospice believes that every person with a life-threatening condition has the right to quality of life and dignity in death. Modiba says: “With financial and human resources, Arebaokeng hospice is able to provide this important, quality care and see the positive impact we can have on communities. Only when we are able to reach everyone who is in distress, will I die a happy woman.”- Health-e News
An edited version of this story was published by Health24.