Hospices are not about the dying but quality care

When Jane Kuria was diagnosed with stage four colon cancer 15 years ago, she started looking for a photographer urgently.

She wanted to immortalise time – to freeze the special moments she thought she had left with her family.

The prognosis was gut-wrenching. She was told she would be lucky if she lived beyond one year.

“It is confusing when doctors tell you your life is ending. There were tears, hopelessness and the unspoken fear of death,” she says.

When she started treatment, the pain became intolerable. One evening, the doctor had a candid conversation with her aboutthe reality of extreme pain and death that defines late-stage cancer.

It is then that they opted for hospice, a holistic care service given to terminally or seriously ill patients that includes pain management and preparation for end of life.

“It reached a point where I was not afraid of death. I did not want to die in pain. I wanted someone to help me with the intense pain I was feeling,” she says.

People around her whispered that getting into hospice means doctors had given up on her.

Ironically, she believes that going to a hospice for palliative care saved her life. Palliative nurses encouraged her to keep taking medication as they managed her pain.

Ms Kuria beat the disease and now lives to tell of the emotions one is confronted with when they have to discuss a subject that most people would rather not talk about: the mortality.

“You realise that death is transition everyone goes through. You focus on living instead of obsessing about dying,” she says.

Kenya Hospices and Palliative Care Association Director Zipporah Ali says there is a misconception that only people who are dying go to the hospice. She says the belief comes from the past where hospice care was for patients with terminal illnesses to get end-of-life care.

Curative

“Hospices now provide care across the trajectory of the illness. Palliative care begins when a diagnosis of a chronic incurable illness is made and should be provided throughout even when a patient is receiving curative cure,” she says.

Brenda Ochieng, whose husband died of pancreatic cancer in 2017 says she is still tormented by the anxiety that engulfed her family when they were told he was no longer responding to curative medication.

Pain medication

“We knew he was dying. We did not know what to do with him. I still get pain in my stomach when I think of how he would cling to me and beg for pain medication,” she says amidst sobs.  

When a nurse suggested hospice, she was scared. She imagined people would say she had abandoned her husband in his last days.

He died a slow painful death. Images of his last days are engraved in Brenda’s mind; how he laboured to breathe, and constantly groaned even when a finger grazed his skin. 

Mercy Kamau, senior palliative care nurse in Nairobi says caregivers bear a big burden of the increased cancer cases in the country, but most of them are still skeptical aboutembracing hospice and palliative care.

She says a group that has not been brought into the conversation are those in professions that condition them to act strong.

“People like soldiers and doctors find it hard to be vulnerable. They need someone to tell them that pain knows no profession,” she says and discloses that some refuse to take pain medication because they want to appear strong.

Even though there are 65 hospices and palliative centres in Kenya, many people still shy away from using their services due to the stereotypes.

Flatly refused

Becky Wanjala, a social worker in Mathare North says there are many cases that she advises to reach out to the hospice, but they flatly refuse.

“People feel proud taking care of their family members to the end even if it weighs down on them,” she says.

Dr Ali says policy makers should ensure hospices and palliative care is part of Universal Health Care, and for the public to be sensitised about the services hospices .

“It is not about dying, it is about living with good quality of life and even achieving a good death where one is receiving careto alleviate their suffering,” she says.