From restless nights to quiet departures: Embracing love, loss, and dignity in dying

Saying goodbye is never easy, but the hope of reuniting with a loved one again can provide some comfort.

But how do you say goodbye to someone who was once a central part of your life, only to now see them as a mere shadow of their former self?

How do you say goodbye knowing that this time, there will be no return?

This is the heartbreaking reality faced by family members and caregivers tending to loved ones in their final stages.

As you walk through the sterile hallways of the Cancer Centre at Kenyatta National Hospital (KNH), the unmistakable scent of antiseptic fills the air, signalling a space where healing and hope intertwine with inevitable loss.

For many, the hospital becomes a second home, a place of refuge for those seeking treatment or palliative care.

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Among those walking these halls is Hannah Njeri, who spent her final days with her mother, lovingly caring for her until her very last breath.

In February 2023, Hannah’s world turned upside down as her mother’s health rapidly deteriorated. Blood clots were discovered, and further tests revealed the devastating diagnosis: Leukemia, a cancer of the blood.

“We spent all of January at KNH, and we were discharged on January 25. But just a week later, we were back,” Hannah recalls.

Despite the uncertainty, she appreciated the honesty of the doctors at the hospital.

“I am grateful that the doctors told us the truth. It’s crucial to be told the reality when a loved one’s health is at risk. They called a family meeting and explained that it was Stage Four cancer,” she says.

Hannah’s heart shattered at the news, but she had no choice, but to accept the inevitable.

“I was devastated. I cried in the doctor’s office, but I prayed, ‘God, you gave me my mother, and now I release her.’ She was in so much pain, and all she needed was love, something we couldn’t give her to relieve the suffering,” she says.

On January 25, after her mother was discharged, Hannah brought her home, determined to shower her with all the love and care she could give, right up until her final moments.

“Our house was transformed into a mini-hospital. One room was set up with a hospital bed and everything needed to ensure her comfort,” she recalls.

Hannah’s daughter, Mary Nashipai, postponed her nursing studies to care for her grandmother. Often, hired help would leave after witnessing the daunting nature of the care required.

“At the family meeting, the doctor told us that her condition had reached Stage Four, and there was no hope of healing, only palliative care. Her wounds stretched all the way to the soles of her feet. They were so painful that every time I cleaned them, she would scream out in agony,” Mary explains.

As her grandmother’s condition worsened, Mary began to notice the subtle signs that death was near, just as the doctors had warned them.

“The doctor told me to monitor her oxygen levels and blood pressure. Three hours before she passed away, I checked them, and they were dangerously low. I called the doctor, and he confirmed what we already feared: there was nothing more we could do. At around 4am, she quietly passed away.”

“She had persistent hiccups. We called the doctor, and after examining her, he told us she was nearing the end,” Mary says, her voice filled with sorrow.

At 4:34am, Mary called her mother to inform her that Mary Njeri Gicheru—mother, sister, grandmother—had taken her last breath.

“I entered the room, and as I did, she took a final, deep breath. She straightened her legs, then peacefully slipped away,” Mary says, her voice barely above a whisper, but filled with the weight of the moment.

Palliatuve care

Dr Esther Nafula, a palliative medicine physician, sheds light on the key differences between palliative care and end-of-life care, emphasising their crucial roles in supporting patients and families during serious, life-limiting illnesses.

“Palliative care focuses on enhancing the quality of life for patients and their families as they navigate the challenges of life-threatening illnesses,” she explains.

“It’s a collaborative effort that goes beyond the work of a single individual. It involves a diverse team of healthcare professionals, including doctors, nurses, chaplains, social workers, psychologists, and, of course, the patient and their family,” she adds.

Dr Nafula outlines the initial steps of palliative care, which begin with a thorough assessment of the patient’s condition, including their diagnosis, prognosis, and the impact the illness is having on both the patient and their family.

“When we see a patient, we begin by assessing their needs. What is the diagnosis? What is the expected progression of the disease? And how is it affecting the patient and their family?” she says.

“End-of-life care typically begins when a patient enters the final six months of life, marked by a gradual decline in their general health. At this stage, they may become bedridden, lose their ability to feed themselves, and be unable to perform activities of daily living,” she continues.

Dr Nafula stresses that preparation for end-of-life care often begins at the moment of diagnosis. In cases where a cure is no longer possible, physicians begin educating the patient and their family about the anticipated course of the illness and its complications.

“At the time of diagnosis, we often already know that the illness cannot be cured, and we foresee complications that will arise. It is crucial for us, as healthcare providers, to communicate this with the patient and their loved ones in a transparent and compassionate way,” she notes.

Communication, according to Dr Nafula, is key throughout the end-of-life journey. She emphasises the importance of helping patients and families set “goals of care,” which may focus on palliative rather than curative treatments. This is particularly important when patients are experiencing distressing symptoms, such as delirium, and it is essential to explain the causes, expected duration, and available interventions.

“We need to be honest with patients and families about the illness and its stage, while helping them set realistic goals of care. If curing the illness is no longer an option, the focus shifts to providing comfort and palliation,” she explains.

In addition to providing medical care, palliative care teams work to ensure families are prepared to care for patients at home, offering guidance on nursing care, medication management, and arrangements for necessary lab tests. Decisions about who will act as the patient’s decision-maker in the event they can no longer communicate are also vital.

End-of-Life Signs

Catherine Abuor, a palliative care nurse, highlights the unique nature of each patient’s end-of-life experience, noting that the timing of death is unpredictable. However, there are some common signs that indicate a patient is nearing the end.

“One of the key signs is refusal to eat and the desire to be left alone,” Nurse Catherine explains.

“Hiccups, especially in critically ill patients, can also indicate that death is imminent. It’s important to inform family members of these signs so they can understand and prepare themselves,” she adds.

Nurse Catherine adds that some patients may display moments of apparent recovery, such as waking up, eating, or making small movements, which can create confusion for families. However, her team’s primary goal is to ensure that patients pass away without pain.

“We know when our patients are approaching the end, but our main priority is to ensure they are pain-free. After 27 years at Kenyatta National Hospital, I’m looking forward to using my experience in the community to make sure no one has to die in pain,” she affirms.

Role of spiritual care

John Kanyi, a clinical chaplain at KNH, explains how spirituality plays a crucial role in coping with the challenges of end-of-life care. He acknowledges the difficulty of discussing death but stresses the importance of addressing patients’ beliefs and values to help them cope.

“Death is a difficult subject, but we approach it by connecting with the patient’s beliefs and values. We use life review as a tool to help patients address unresolved conflicts, often within family dynamics. By processing their lives and resolving these issues, patients can find peace,” he says.

Rev. Kanyi also highlights the importance of initiating a holistic approach early in the diagnosis. He recalls a personal experience where a physician called him only when the patient was no longer responsive, and he stressed that without engaging with the patient’s values and beliefs earlier, interventions risked addressing the needs of the caregiver rather than the patient.

“The essence of this conversation is to prioritise the patient’s needs and ensure they are addressed with compassion,” he notes.

Imam Mubarak Ali, chaplain and imam at KNH, emphasises the importance of spiritual care for both patients and their families during the final stages of life. He explains that, in Islam, life is viewed as a trust from Allah, and death is seen as a transition to the hereafter.

“Islam teaches that death is a transition from this world to the next. As Muslims, we prepare for death through religious teachings and supplication,” he explains.

“However, as human beings, we are still deeply affected by the process. That is why a holistic approach is essential during this time,” he adds.

Imam Mubarak further describes how chaplains provide spiritual support by offering prayers, reminding patients and their families of Allah’s presence, and helping them find comfort in their faith during this challenging time.

“We stand with patients and their families, providing spiritual support through du’a (supplication), ensuring they remain connected to their spiritual strength. This is crucial in helping them navigate the emotional and spiritual challenges they face,” he explains.

In these deeply reflective moments, healthcare providers, chaplains, and family members come together to offer compassionate care, dignity, and comfort, ensuring that the journey towards the end of life is as peaceful as possible.