“I used to think hospice care or palliative care was for cancer patients only.” Said Clare Akinyi.
There is a wide misconception about palliative care. Some people have not heard of it. For some who have heard about it, they believe it is meant for cancer patients only, more so for those who are terminally ill and need end-of-life care.
Public opinion on palliative care has been distorted because of a lack of understanding and awareness. Clare Akinyi used to believe that hospices are for cancer patients. She was diagnosed with chronic kidney disease.
“I was pregnant and I had high blood pressure in November 2015. I was shocked to find out I was pregnant. I went for tests in the hospital and I was referred to a kidney specialist. I was diagnosed with chronic kidney disease in 2016 and I was advised to find a kidney donor.” Said Clare.
She adds, “After talking to family and friends about my diagnosis, and what the doctor suggested, my sister offered to be my donor. This was to happen in 2017. We went for tests and the doctors were able to confirm that she was a suitable donor. One day she got cold feet. She was advised against going through with it by relatives and her friends. She was told I was bewitched, that is why I am in my current condition and if she goes through with it, something bad will befall her.”
Some people are unfortunate to go through a lot of trauma and psychological problems due to the diagnosis. Financial challenges are also common.
“I used to work as a receptionist in a hospital in Nairobi. I thought because he was a doctor he would understand my condition and perhaps offer some assistance. I would go for dialysis twice a week and I asked my boss for assistance especially on the day I go for dialysis. My boss was not empathetic and that is how I lost my job in April 2016.” Said Clare.
“It took me a while to accept my condition. I had to accept myself. I was referred to Nairobi Hospice by a friend and I got help. I come to the hospice on Thursdays for daycare and I interact with other patients. This gives me the reassurance that I am not alone. I will continue with dialysis because I don’t have a donor. I will not lose hope.” Clare.
Maria Wanjiku was a domestic worker and her job was affected by her condition. She suffers from an autoimmune skin condition.
“I had blisters and my skin was swollen. Blood and other fluids would ooze from my skin. I could not wash my body because of the pain from the sores on my skin.” Said Maria.
She adds, “I used to work but my skin condition led to job loss because I was unable to work and the families I worked for could not keep me in their home with my condition.”
“Right now, my condition has improved and all that is left are the black marks on my skin as a reminder of what my skin used to be. Right now I am well and I can do everything I used to do. I have faith that one day I will be healed completely. Kenyatta National Hospital Pain and Palliative Care Unit has been my support system. They talk to me and counsel me. They make me feel better. They give me psychological and emotional support when I need it.” Maria.
Palliative care is holistic support that deals with physical, psychosocial, and spiritual suffering faced by persons living with serious health suffering. It should be provided to the patient and family from the time of diagnosis hence improving their quality of life. This service is provided at home and within various palliative care units and hospices across the country.