Desire for death: At the depths of pain and despair

In the small village of Oduo in Muhoroni, Kisumu County, a woman curses every time she wakes up. Suffering a cancer that medicine can’t treat, she can’t wait to exit the stage and rest. For good. She, like many other Kenyans, has been let down by a health system and community that does not provide small comforts to those whom medicine has failed. Most importantly, she is the poster girl for what happens when pain, poverty and despair meet

If this were a play, we would gladly describe the scene in Monica Onyuro’s house. The warmth. The laughter. The cheer. We would tell you of the cobwebs dangling from the ceiling, and the birds whispering little nothings across her bedroom window.

But this is not fiction. There are no villains and heroes in this story. No. This is the story of human despair in its most excruciating, inhuman form. We are telling it from Onyuro’s small home in Oduo village of Muhoroni, Kisumu County, where she says, she is waiting to die.

Nothing could have prepared us for this moment. At the story docket meeting in Nairobi, we had purposed to go around the country looking for patients with terminal illnesses who, for lack of good medical care, are languishing in misery and agony as they count down the clock.

The idea was to bring to the attention of Kenyans and the authorities the neglected needs of this growing community and suggest solutions to rescue them. We thought it would be an easy assignment. Oh, how wrong we were!

We arrived at Oduo to the jarring sight of a woman sleeping on torn clothes soaked in blood from a wound in her head. The haunt of her eyes, the ache of her limbs, the frailty of her voice, the nothingness around here, jumped at us with frightening fury.

And in that moment, a sense of helplessness, nay, shameful hopelessness, enveloped us.

“Please come help me out of the bed,” she pleaded. “I cannot step down on my own. My legs are swollen and they are very painful.” 

Bedridden and in great pain

As we did, she said she had not left her bed for two weeks and had only been surviving on water and food from well-wishers. Then she composed herself to speak her mind.

“I am not sure how much time God still wants me to continue suffering,” she started, the words too hard to voice, but too important for her to utter. Her chest heaved with a combination of emotion and sorrow as she strung the next sentence:

“I don’t know the number of days, months or even years I have to live, but I can’t wait to leave.” 

Onyuro has cancer of the ear. No amount of medical interventions and technology can save her now and her only hope is palliative care to save her the agony in the sunset of her life. 

For the 20 years she was married before her husband died, they were not lucky to get any children. And now, in her sickness, she is all alone. The 56-year-old says she has never known peace and happiness her entire life.

“I don’t know what I ever did to God. I asked for a child for 20 years until my husband died but I was never lucky. I stayed alone and after the death of my husband, the pain has left me in a prison of my own existence, unable to escape,” she said.

She does not have the money for treatment and depends on well-wishers for food, medicine and even transport to hospital every month. Here, in the small hamlet of Oduo, is the poster girl for what cancer can do to a poor, lonesome person.

It all started as a pimple in her left ear in 2013. For two years, she managed it using painkillers. When it worsened, a neighbour took her to Moi Teaching and Referral Hospital in Eldoret for scanning.

Cancer of the ear

The diagnosis turned out to be acute otitis media, or cancer of the ear. This is a painful infection that normally occurs when the area behind the eardrum, known as the middle ear, is inflamed and infected.

With no money to pay her hospital bills, Onyuro did not start treatment until 2018, when she was taken by her neighbour to St Catherine McAuley Hospice in Muhoroni.
Progressively, the pain in the ear got worse, and it turned into a horrific wound.

“At the Moi hospital in Eldoret, they needed close to Sh100,000 to start my treatment and I didn’t have a single cent. I decided to come home to plough my farm and sell produce to get money for treatment but it never worked. I have never started any treatment since I was diagnosed. I have been in pain, just depending on painkillers to push my days,” she told Nation.Africa.

She wants no pity, no encouraging words to keep moving. As she lays in her bed, she believes there is no miracle from heaven that will cure her. Death, she says, is her only healing.

“I have suffered enough. My neighbours have done enough. I have seen everything I would wish to see on earth and I don’t see the need of staying anymore,” she says.

When she talks for long, her throat, which has now been affected by the disease and deformed her facial structures, dries up. She cannot chew and cannot turn her head.

The lymph nodes have been utterly invaded by the cancer cells.

She is always fatigued and in pain. When not in pain, she can crawl and make herself a meal; but often she spends her days between her bed and the small seat next to it.

Losing bodyweight 

“My muscles have started to give in. I struggle even with simple activities like bringing a glass of water to my lips. I can’t make meals as I used to and at times it hurts to just breathe,” she says. 

Taking a bath is a luxury to her. At this stage, she should have someone taking care of her; bathing her, cooking for her and providing her with small comforts. But life has dealt her a blow she can’t fathom, and for days on end it is always her, her bed, and the pain in her ear.

The last time she took her morphine was two months ago. She does not have the money to buy the painkillers, and the rest of her body, she says, is giving up on her. 

Her hospital records indicate she should be going for her checkups every month, but since December last year she has not left her home. She is rapidly losing bodyweight too, from 56 kilogrammes in December to 42.

Onyuro, the sprightly young girl who in her youth coloured the plains on Muhoroni with elegance and charisma, and who madly fell in love with the man who would marry her, is underweight and malnourished. And she has excruciating pain in her ear.

Ms Rose Nekesa, the nurse in charge of the Kisumu Muhoroni Palliative Hospice, says they had lost track of her.

“She is alone and this is part of the reason we always want her to stay at the hospital for even a month as we monitor her,” she says 

Onyuro does not have a National Health Insurance Fund card and depends on people to take care of her.

Palliative care

“This is one of the reasons why she is tired with life,” says Ms Nekesa. “We have had several cases like hers and routinely waiver their bills because if we don’t do that, they will die at home.” 

The World Health Organisation defines palliative care as an approach that improves the quality of life of patients and their families facing problems associated with a life-threatening illness through the prevention and relief of suffering by means of early identification and assessment and treatment of pain.

In Muhoroni, where patients like Onyuro abound, the spirit to provide that care is alive, but the means to do so is often inadequate. Her anguish is exacerbated by a family dispute over the small piece of land she says is her only worldly possession.

Whenever she is in hospital, the thought that she might come back and find her house brought down overwhelms her, and so she opts to stay at home to, in her feeble state, guard her property.

“When she is unwell, she does not think of anything back at home, but when she gets a little relief she asks about her house,” says Ms Nekesa.

“I don’t see the need of living,” insists Onyuro. “I am the less fortunate that God forgot about. If I had a child maybe, I would not be suffering like this.”

But, even in her anguish, Onyuro is lucky to have the small hospice at Muhoroni checking on her. Lack of access to palliative care and pain relief is a public health crisis in Africa, and particularly in Kenya. 

According to the 2017 Lancet Commission Report that provided compelling evidence of the burden of palliative suffering, over 61.5 million people in Africa live in chronic pain that could be addressed by palliative care, but only 10 per cent of them receive it.

Unacceptable reality

These figures are likely to rise as the continent ages.

“A painful and distressing end of life is an unacceptable reality for too many people in Kenya,” says Dr Zipporah Ali, Executive Director, Kenya Hospices and Palliative Care Association (KEHPCA). “This is due to many challenges, including limited access to medication for pain and other symptoms, limited health professionals trained in palliative care, few national-level policies, weak government commitment, and a lack of funding for implementation.” 

Access to palliative care, adds Dr Ali, is “a real and neglected human right”. 

Data from KEHPCA shows that about a million Kenyans require palliative care, yet less than 10 per cent of adults and one per cent of pediatric patients have access to the same.

That is ominous, because Kenya is one of the countries in Africa facing an increasing burden of both communicable and non-communicable diseases. 

“To ensure the best care and comfort is available to all, palliative care must be mainstreamed into the country’s health care system, including through universal health coverage reforms,” offers Dr Ali.

Shortage and procurement issues of drugs to relieve pain have cost the country many patients and left many others, like Onyuro, desperate. For instance, in 2019 the country needed 150 kilogrammes of morphine but only 25 kilogrammes were procured.

Against this backdrop, the number of hospice and palliative care providers in Kenya has grown from seven in 2007 to seventy 70 in 2019, reaching over 30,000 patients and families annually. 

Cancer patients contribute to 40 per cent of the patients requiring such care, followed by HIV at 25 per cent, cardiovascular and diabetes patients at 10 per cent each, organ failures at eight per cent, and other diseases at six per cent.