You took away the pain.
And helped me deal with the anxiety.
And the fear.
Making my journey bearable.
Seeing me for the person that I truly am.
I have been through anxious and worrying times since the diagnosis.
The aches, sadness and uncertainty filled my mind.
For a moment, I had lost everything, including hope.
I was worried about many things;
- What does “advanced cancer” mean for me?
- What treatment choices do I have?
- What side effects will I experience?
- Will my symptoms get worse?
- How long can I live with my advanced cancer?
- How can I make my treatment plan to be comfortable and free from pain?
- Can I get help for my legal and spiritual issues?
However, my life took a turn for the better after a session on palliative care. It helped hold everything in perspective. I was in a better position to put my small world together. I enjoyed the serenity of my small space. Loved the closeness and concern by family and friends who took time to understand my needs as the treatment journey continued.
These are the words by 38-year-old Angela Mung’au who began palliative care two months ago. She was diagnosed with colon cancer stage 4 and as treatment continued, she felt empty. Every day, it was a race from one doctor’s appointment to the next. Nobody sat down with her to address her welfare.
Today we explore palliative care from the perspective of both the doctor and the patient. Dr Esther Muinga, the coordinator for Pain Relief and Palliative Care at Kenya Hospices and Palliative Care Association defines palliative care as a branch of medicine that focuses on reducing on the severity of symptoms of a disease. “It is about love, compassion and dignity,” Dr Muinga says.
Dr Esther Muinga, Palliative Care specialist
The World Health Organisation describes palliative care as an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.
Palliative care is given to patients with hard-to-cure illnesses like cancer, heart conditions, HIV/Aids, kidney failure and other life-threatening conditions. It is a multidisciplinary area of health that brings together doctors, nurses, registered dieticians, pharmacists, chaplains, psychologists, social workers among others.
Quite a mouthful!!
Dr Muinga further explains that palliative care is holistic, patient-centered and should involve every significant member of the family. “The goal of palliative care is to provide a support system to help the patient deal with pain and other distressing symptoms,” said Dr Muinga.
Palliative Care is holistic, patient centred.
Dr Muinga disputes a common myth that when palliative care is given, death can be hastened or postponed. “Our goal is to ensure that the patient remains as active as possible and we also provide an avenue where they can have spiritual connection according to their beliefs, she added.
Some of the pertinent issues addressed during palliative care include;
- Emotions like fear, worry, anxiety and depression that come with a diagnosis of a life-threatening illness.
- Taking care of a loved one at home
- Communication with immediate family, friends and colleagues
- Management of pain and physical symptoms
What is the difference between palliative and Hospice care?
The main principle is that both hospice and palliative care offer compassionate care to patients with serious health suffering. Dr Muinga adds that palliative care is also focused on relieving symptoms associated with the patient’s condition while receiving active treatment and also addresses the patient’s physical, emotional, and spiritual needs.
“Hospice can help with such daily activities as administering medications, bathing, and dressing, but hospice does not provide full time caregivers. Hospice requires that a willing, able and available caregiver be in the home, unless alternate arrangements are made. Hospice care also includes home visits for the patients and families,” Dr Muinga added. In Kenya, there is no clear-cut distinction between these two fields, they complement each other.
“The Kenyan hospices are stand-alone community owned/based organizations. Whereas the palliative Care Units (PCUs) are usually within a health facility -private, public, mission for example the one at the Kenyatta National Hospital,” Dr Muinga added.
When is it given?
“Palliative care can be given right from the beginning when a diagnosis is made. It can also complement other forms of treatment, “she said.
The WHO goes an extra mile to define palliative care for children. “This is the active total care of the child’s body, mind and spirit, and involves giving support to the family.
Where can one access these services?
According to Dr Muinga, palliative care is offered at Kenyatta National Hospital and the Moi Teaching and Referral Hospital, private health facilities, some government hospitals, mission hospitals. Here are more health facilities that offer palliative care in Kenya.
There are also free-standing hospices. These include;
- Busia Hospice
- Catherine Mc Auley Hospice – Muhoroni
- Coast Hospice
- Eldoret Hospice
- Embu-Mbeere Hospice
- Kakamega Hospice
- Kisumu Hospice
- Laikipia Palliative Care Centre
- Nairobi Hospice
- Nakuru Hospice
- Nyahururu Hospice
- Nyeri Hospice
- Siaya Roselyne Hospice and Palliative Care Centre
- Meru Hospice
Palliative care can be provided in a hospital, hospice, at home or in the community. Palliative care is everyone’s business. There is always something that can be done.
On the second part of palliative care, we will explore when and how palliative care is given. We will also have a look at some of the pertinent issues during treatment and care that can be addressed by all.