Miracles still happen in palliative care as told by Josephine Ihuata Sagiri

Josephine Ihuata Sagiri believes palliative care can lead to miracles.  Because of the care she received, the 45-year-old says she can now cope with a head tumour she has been living with for 16 years. And six years ago, she gave birth to a son whom doctors now call a miracle child because he has brightened the lives of Josephine and her husband John Sagiri.

“Samuel has brought us immeasurable joy and keeps our minds away from Josephine’s illness,” says Sagiri.

The care that Josephine receives has improved the quality of her life; she is seldom in pain and is able to manage her household chores.

“I was on pain medication and only realised I was pregnant in the last trimester,” Josephine told The Standard on Sunday of the miraculous conception and birth of Samuel in the midst of treatment.

In ordinary circumstances,   a patient with a life-threatening disease can live a normal life through relief of suffering by means of early identification and treatment of physical, psycho-social and spiritual effects.

Nyeri Hospice nurse Esther Kahuthu adds: “The medication we give as part of palliative care eases pain, shortness of breath, fatigue, constipation, nausea, loss of appetite, difficulty sleeping and depression.”

Kahuthu says they are trained to care for and listen to a patient even when the disease is at an advanced stage.

“We strive to ensure that both the family and the patient are comfortable,” Esther says, adding that there are group therapy sessions where families share experiences and learn from each other.

Samuel, A Class One pupil at Kiriko Primary School in Karatina, aspires to be a doctor.

Persistent itch

“I would like to treat persons with headaches like my mother,” he told The Standard on Sunday at their home in Nyeri.

What is the story behind his mother’s headaches?

Her husband says it all started as an ear itch that later progressed to the production of discharge. At first, they dismissed it as an infection that would go away on its own, but when it did not, they sought assistance at a Karatina District Hospital.

The itch persisted and at times got so severe that Josephine used a stick to scratch inside the ear.

“I was prescribed pain medications but the discharge persisted for a week and a scan later showed that I had a growth in my head,” she says.

Surgery performed by doctors from Sweden only partially removed the growth and in later years it continued to grow, prompting further treatment.

Josephine then sought treatment at Kenyatta National Hospital.

The growth has affected her vision in one eye but the pain medication has made life easier. Josephine hopes will be treated one day when she is able to seek specialised treatment.

Kenya Hospices and Palliative Care Association executive director Zipporah Ali says palliative care has been integrated in all the former provincial Level Five hospitals and in 30 county hospitals countrywide.

Unique conditions

“Palliative care is about helping the patients to live a life that is as active, pain-free and comfortable as possible. It is not just for those imminently dying,” says Dr Ali, adding that it should begin at the onset of a life-threatening diagnosis.

She emphasises the importance of an anchored support system from colleagues, family and friends, adding that this care stems from the tagline, ‘reducing the pain and suffering of patients and their loved ones,’

This year, the focus is on the patients living in unique conditions who often struggle with access to palliative care such as children, people living with HIV, prisoners, soldiers and lesbian, gay, bisexual and transgender individuals.

Palliative care is provided to newborns, infants, teenagers and adolescents, adults and the elderly alike.

Dr Ali says some of the improvements the last seven years include better accessibility and affordability in palliative care through scaling up of services and integration into the public health care system.

Some of the hospices in Kenya that offer in-patient services include Kimbilio Hospice in Kipkaren with a 24-a bed capacity, and Thigio Hospice in Kiambu, which can accommodate nine.

And whereas services like counselling of patients and family, control of distressful symptoms like pain, bereavement services, spiritual, emotional and psychosocial care is offered by a team of trained health care professionals, Dr Ali notes that most of the health facilities with this department are overwhelmed and specialists are unable to visit the patients at home.

Dr Ali sets the record straight on a common misconception that some drugs such as morphine used in palliative care are addictive.

Effective medicine

“It is a safe and effective drug for controlling moderate to severe pain, hence denying the patients this is torture and against human rights,” she says.

For Dr Ali, some of the most fulfilling moments are when both family and friends understand the nature of illness, its progression and are well prepared to handle arising complications.

“The smile on a patient’s face. The peace and comfort you bring to both the patients and the family. These are moments palliative care staff treasure forever,” she says.

Dr Ali notes that the inclusion of palliative care in the training curriculum is a milestone in enhancing its role in the public healthcare system.

“In 2013, a higher diploma course for nurses was inaugurated at the Kenya Medical Training College, making it possible to have specialist nurses in palliative care who are expected to be trainers as well as mentors of other healthcare professionals,” she says.

Back to the Sagiris. They affirm that their love for each other remains steadfast despite the illness and look forward to growing old together. In fact two years ago, Josephine and John had their wedding officiated at the PCEA Rititi Church in Karatina.

“I loved her as a young girl, married her and will continue taking care of her until God says it’s time,” Joseph pledges.