Palliative care critical for the seriously ill

For many years, Millicent Kagonga endured the discomfort and shame of living with a foul smelling vaginal discharge whose cause she was unaware of.

The stigma and isolation caused by the condition drove her into depression, causing her so much pain.

When she eventually sought medical assistance in 2016, Millicent was surprised and shocked to learn that she had cervical cancer.

“I had heard that people with cancer die. So I was scared. And the news didn’t come in the right way. While giving me the diagnosis, the doctor just shouted at me and asked how I was capable of walking around with my uterus looking that bad.”

This made Millicent feel guilty. She blamed herself for the situation she was in, hence delving deeper and deeper into depression.

Before she could absorb what was happening to her, Millicent was required to begin treatment immediately by undergoing chemotherapy and radiotherapy.

“I didn’t know what those things were. The doctor just told me that my uterus was going to be burned for some days. This was scary. I imagined they would light a fire somewhere and burn me slowly with the heat. It was terrifying.”

Back home, Millicent struggled to put on a brave face and remain strong for her children who were deeply saddened and worried about her condition.

“As if that wasn’t enough, one of my children died. My husband also decided to abandon the marriage, as he no longer found me attractive. This was one of the lowest moments of my life and I wondered how I was going to survive,” she said during an interview with the Business Daily.

Luckily, Millicent was able to receive palliative care, which enabled her to embrace treatment and eventually get well.

It also equipped her with skills and knowledge that made her to effectively cope with, and tackle the emotional turmoil that had engulfed her while she was ailing.

Dr Esther Muinga, a palliative care co-ordinator from the Kenya Hospices and Palliative Care Association states that to effectively manage life-threatening conditions, it is important to combine medical treatment with palliative care so as to help patients address a myriad of challenges that usually arise due to the diseases.

“This is key. But most people neglect palliative care. They are unaware of its benefits because they think it is for people who are dying from diseases that can’t be treated.

She notes that palliative care is given to patients with life threatening conditions (like cancer, dementia, HIV/Aids, kidney failure and heart or lung disease) irrespective of whether they are expected to recover or not recover from the respective diseases.

This is different from hospice or End- of-Life (EOL) care that solely targets patients who are not expected to recover from their condition. Generally, these are people believed to have less than six months to live and are no longer receiving curative treatments for their illness.

With palliative care, patients learn how to deal with life disruptions, physical problems, psychological challenges and spiritual upheavals linked to the life threatening conditions.

“They are supported to understand the types of treatment they will undergo and what they entail,” says Mercy Kamau, a senior palliative care nurse at Nairobi Hospice.

Through palliative care, patients also get help on how to deal with physical side effects of treatment such as pain, nausea, vomiting, fatigue, stiffness and loss of appetite.

“They may also go through rehabilitation therapy to enable them cope and learn how to live with disabilities such as loss of sight or body parts — like limbs —caused by life threatening ailments.”

Ms Kamau notes that the psychological support offered through palliative care goes a long way in preventing stress, depression and other mental conditions that afflict patients.

Upon being diagnosed with life threatening ailments, people usually experience very many emotions such as grief, sadness, uncertainty and anxiety that can take a toll on them.

This challenge can be addressed through counselling, meditation, and possibly medication to help with anxiety, depression or sleep problems caused by stress or depression.

It is also recommended that patients partake in activities that can help reduce stress and anxiety such as exercising, doing yoga, creating art, volunteering for a cause they find meaningful or joining patient support groups comprising people that have gone through similar experiences.

According to Ms Kamau, the emotional and mental health support also targets family members and close relations of affected patients.

"We help them break the news to their loved ones and support the family to come to terms with the diagnosis made. During this process, they also learn how to support the sick person.”

She notes that focusing on the family is very important as people can get into depression, indulge in drugs and alcoholism, or commit suicide when they cannot cope with the illness of a loved one.

Millicent notes that after her cancer diagnosis, her two children suffered from immense stress as they watched her deal with the pain and side effects of treatment.

But through counselling offered by Ms Kamau, the children were able to effectively cope with the challenge and concentrate on their studies.

Drawing from her experience, Millicent established a community-based organisation known as Symbol of Hope Warriors in 2017, which offers support to cancer patients. The outfit has given her a new meaning and purpose to life post cancer.

"We are a group of women who do this work voluntarily. We visit homes or hospitals and reach out to affected people so they can know that they aren't alone."

"Right now we're looking for support from well wishers to enable us establish income generating activities that can offer financial assistance to cancer patients who may be unable to work and take care of their families as they undergo treatment."

In spite of the significance of palliative care, a majority of Kenyans are still unable to access it.

Major private facilities and many specialised palliative care clinics usually offer the services at a fee that is way out of reach of low-income families.

Those that offer the service at subsidised costs or no charge to needy patients - such as Nairobi Hospice and Kenyatta National Hospital (KNH) Hospices and Palliative Care Unit - rely heavily on donors to fundraise.