The story of Linda*, presented below speaks to some of the complications and challenges faced by our care team in delivering quality Hospice palliative care to our patients.
Very often our patients will have a number of small successes in their journey with their illness and these small successes add up to contribute to the overall experience of their illness. I would like to share the story of one our patients, Linda, and her family.
Linda has been with Msunduzi Hospice since July 2018 when she was referred to us. She was diagnosed with HIV in 2002 but has been defaulting her ARVs for the last 6 years and was not well and very weak when we first visited her. With encouragement from our Hospice staff she is now back on her ARV’s and her condition is improving.
Linda was very emotional about her condition and was referred to our social worker for counselling and support. During these sessions it became apparent that she had lost contact with her siblings and her children also missed their immediate family. The social worker made contact with one of her sisters and asked her to visit Linda. In September 2018 Linda received visits from her sister and her brother also phoned her. Thereafter her emotional state improved and her daughters commented on her being able to do much more in the house and care for herself. It was a huge burden for her after she lost contact with her siblings and she had felt very lonely.
After this intervention with Linda’s siblings it became apparent that there were underlying issues between Linda and her daughters, with one in particular, that was causing a lot of tension in their family relationship. Our social worker has been working on improving these relationships and was having some success when Linda started showing signs of being confused and hallucinating. This started around mid November 2018. Linda saw a traditional Healer (a common practice among many of our patients) who told her she was bewitched. By December 2018 Linda’s behaviour had become more aggressive and she often screamed at her family and threatened them. In mid January 2019 her behaviour had become even worse and her daughters were afraid of her. She was put on some medication by the clinic doctors but it was not helping.
Msunduzi Hospice has monthly meetings with the doctor in charge of the clinics and we discussed Linda’s condition with him at our February meeting. He advised us to increase her medication and suggested that the family take her back to the clinic. He wrote a referral letter to take with them when seeing the clinic doctor. Our nurse gave the family the advice from the doctor and the letter. The family managed to get their mother to the clinic, from there she was admitted to hospital and treated. On her discharge from hospital Linda has improved and is on treatment which appears to be effective.
We will continue our journey with Linda and hope to have many more successes going forward. With her condition being more stable we are hopeful that the relationship with her daughters will be one of those successes.
The above story explains clearly the complicated factors that impact on a patient’s adherence to medication. It is seldom a simple matter of taking said ARV’s as prescribed, but often the emotional state of the patient plays a role in their willingness or ability to adhere to a treatment schedule. The value of the care provided by Msunduzi Hospice to our HIV+ patients is that this care is holistic and, where possible, addresses the psychosocial needs of the patient/household, thus building resilience within the patient and strengthening the ability of the patient to adhere to treatment protocols. The care is also supportive of the family/household and in this way strengthens their ability to help care for the patient.
This story demonstrates the complexity of the work of Msunduzi Hospice. These services described above are provided entirely free of charge to our patients and cost Msunduzi Hospice a considerable amount of money. In our last financial year (to the end of December 2018) the cost of care for a patient was in the region of R1,280.00 per month. The care is provided by a team of nurses, social worker, care givers and memory workers, all of whom are passionate about Palliative Hospice care and are deeply committed to their patients.
The funds to pay for this care are generated by our team here at Msunduzi Hospice and we rely heavily on our corporate donors, our retail activities and you, the members of the public, who make such generous donations to keep the services we provide free.
We care because you matter.
* The name has been changed to preserve confidentiality.
To learn more about the Msunduzi Hospice Association and the work they do, click here