Death is a vital topic yet enveloped in thick layers of superstition and myths. We discuss end of life in hushed tones and sombre whispers. Under the blanket of the night sky or in nameless street corners: like drug peddlers. You know they are there but you don’t even know any by name. In common Kenyan argot,”mtu hujua pedi wake .” Perhaps the same for end of life.
Death for the longest time in Africa and Kenya to be precise has been an arena of curiosity. Yet it is a part of us; separate from us but also a part of us. Waiting for us but also hiding from us. Our tribal and religious leaders have come up with (un)helpful cliches to sell to anyone dealing with bereavement, if they are willing to buy.
Whether the above works or does not is not a bone of contention. The elephant in the room is that every human being has a right to proper medical care until their end of life. Especially for patients who are terminally ill. Though we pray and fast for them to recover and cling onto hope that they will, it behooves us now more than ever to prepare for end of life.
The average hospital setup caters for acute medicine. Conditions like dementia associated with old age, Alzheimer’s disease or even end stage renal failure do not get space in the hospital setting. Granted, hemodialysis remains an option for kidney failure. That does not negate the fact that in itself, end stage renal disease is a terminal illness.
Oftentimes patients dealing with terminal illnesses land in the hands of family members who are busy with their own lives or simply do not know what to do. The duty of care is hence left to any charismatic person who genuinely do their best. This best is not always safe either for the patient or for the carer.
There exists a gap deeper than the roots of any corruption scandal in Kenya between acute and chronic medicine. That includes the knowledge base for our healthcare providers too.
It is seen as a taboo for a doctor to disclose to the patient that they have a terminal illness. Either that or the doctor simply plays it down and sells a mountain of hope to the patient and his or her loved one. The brave ones do not talk about it and pass it on to the nurses who have no legal power in Kenya for medical diagnoses. The patient is left in a wide limbo of misinformation or no information.
Hope is a necessary ingredient in our dish of healing. However, having medical facts in a humane manner does help one process the shock and start an important conversation regarding the kind of care they wish to receive when the inevitable happens. Whether that takes a month or a hundred years is for the Giver of life to determine.
In the absence of nursing homes, home-based Nursing services in Kenya is the unnoticed guest. The idea of a service to take care of both the aged and terminally(or chronically in some cases) ill initially interested me when I started working in care homes in the UK. Then inspired me, captured me and now it is imprisoned in my mind. I am overcome with a need to bridge the rift in care in my motherland.
Nurses, patient care attendants and by extension doctors, are part of the calming team of companionship to every family struggling with a loved one suffering a terminal illness or frailty associated with old age. Teaching hospitals have taken up the role of training patient care attendants who become equipped with basic caring concepts. These become handy even when family teaching is concerned.
As much as the future is female, it is also aged and in desperate need of a helping hand. Which reminds me, have you noted how the female life is all about patchwork and maintenance? Is it just me or other females out there undergo patchwork? My nails for instance, they need constant repair lest I look like I live in a rabbit hole (which I probably do).
Talking of which, I decided to be a beautiful nurse and applied some shellac paint on my nails. It was a light mix of pink and glittery things. I paid an arm, a leg and a pound of my flesh to Angel a Chinese (or Korean) nail artist down in West Pilton street.
I was certain they would serve me for a month. The nails not the artist. It came as a stab to my heart when my mentor at my new workplace broke the news that nurses shouldn’t have paint on their nails. I had to get rid of them. I’m yet to recover. I need a self help group or something. If I ever quit nursing, it will be because I want to paint my nails. Sob. Sob.
More maintenance is needed to my hair which is actually funny because half of it is left at the salon (silent sob). My hairline needs repair lest my forehead extends to my neck. And my toes! Please let us not discuss my toes.
Either I’m paying too much attention to myself or the female life involves needles and threads, screws, nuts and bolts, stick ons and different types of glue.
This alleged feminine future equally needs maintenance. However it has no permanent people staying in the village with our elderly parents and grandparents or even the sick. They all are chasing after tax money and better education in the big cities.
The traditional African village has been replaced by the hustle and bustle of the modern day life. Traditionally, the sick and aged would have been taken care of by the children or anyone else because the vulnerable were a collective community responsibility. That has morphed. We need to adapt to the vicissitudes of the seasons.
It is not just enough to visit the Accident and Emergency department. It is no longer sufficient to get discharged after acute care. Life moves on and on forever after these stages. We need to accept it. We need to realize this screaming need in the society with regards to management of terminal illnesses.
If we can’t have proper care homes, then let us fully embrace home-based nursing services. It is not only cheaper in the long run for the family, it is also less distressing to the patient. There is a certain peace in being taken care of in a familiar environment.
A conversation touching on end of life needs to permeate through our deeply anchored superstitions. Talking about death does not make it come sooner. In fact, it does not make it less a reality than it already is. It allows us to be on the same page with regards to management of symptoms that come with whatever underlying condition is in question.
It empowers the doctors to think about medications to relieve unwarranted pain, respiratory secretions and anxiety that accompany end of life. It allows family to be aware and take part in the management of the care of their loved one. It gives power to palliative care nurses and geriatric care nurses to expand their roles outside the hopls
In this dynamic world, it is reassuring to know you’ve entrusted your loved one to the hands of a trained professional. That they know what to do and how to do it. That they know what they are looking for and how to mitigate it. Now that is peace personified.