Why we need to create awareness on palliative care

What you need to know:

  • A caregiver should consult a palliative care institution immediately their loved one is diagnosed with a life-threatening illness.

  • Palliative care assures the patient and caregivers that, as much as life is precious, there come a time when we will have to separate.

Seeing a loved one in pain can be heartbreaking for a caregiver or family member, especially when they have little or zero knowledge about the illness their kin is suffering from.

In addition, witnessing your loved one’s body begin to deteriorate to an extent where they can no longer do basic self-care activities such as feeding themselves, showering, cleaning their clothes or even sanitary hygiene can be quite frustrating.

HUMAN RIGHTS

The World Health Organization (WHO) defines palliative care as an approach that improves the quality of life of patients and their families facing the problem 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.

In this view, palliative care is a resource for patients living with very serious life-threatening or chronic diseases, including heart failure, cancer and dementia, as it enhances their knowledge on the illnesses symptoms, further enabling a better and more comfortable life.

Article 59 of the Constitution established the Kenya National Human Rights and Equality Commission.

Among the functions of the commission are to promote respect for human rights and develop a culture of human rights in the public.

A caregiver should consult a palliative care institution immediately their loved one is diagnosed with a life-threatening illness in order to be able to accord the best care to the patient as soon as possible. Unfortunately, a majority of Kenyans do not know this.

In my experience, when my mother was diagnosed with a terminal illness, we were very confused. We depended on the doctors, who, most of the time, were not available as they were attending to other patients.

EASE BURDEN

Thanks to the internet, one of the greatest inventions of all time, my sister was able to reach out to a palliative care institution through a Google search.

The institution then sent a representative to speak to my family members, enlightening us on what we needed to do, when and how — a move that eased our burden significantly.

Through palliative care we found hope, and although my mother did not pull through, she was given better healthcare.

How we leave this world is unknown to us, but something we all know is that everybody deserves the best care, hope that all will be well, and a good send-off, if they do not make it.

Palliative care assures the patient and caregivers that, as much as life is precious, there come a time when we will have to separate.

Use of products such as painkillers ensures that the patient fights the disease with minimal pain.

The Kenya Hospice and Palliative care Association (KEHPCA) gives key components of the right to health in the context of palliative care.

First, it involves availability of palliative care services and products used in pain management without discrimination.

Second is its accessibility and affordability.

FORM POLICIES

In regard to the goods and services provided by palliative care facilities, the organisation notes that they have to be of good quality. At the minimum, this requires skilled medical personnel, scientifically approved drugs — including opioids for the control of moderate to severe pain — hospital equipment, safe water and adequate nutrition.

KEHPCA also explains that palliative care should get the recognition it deserves — meaning that medical ethics must be respected and the services should be culturally appropriate.

There are various hospice and palliative care services centres in Kenya. They include Baraka Medical Centre, Nairobi Hospice, AIC Litein Mission Hospital, MP Shah Hospital - Cancer Care Centre, and Moi Teaching and Referral Hospital - Palliative Care Unit (housed in the Oncology Department - AMPATH).

It is commendable that all these institutions are in existence.

However, the government, among other stakeholders in the health industry, should ensure that hospice and palliative care institutions have enough funding, form policies, guidelines, pathways and protocols for proper access of palliative care and support for the provision of goods, especially painkillers, to take care of the terminally ill.

There should also be a push for advocacy and awareness at the public and institutional level for palliative care and support.

Ms Victoria, a communications consultant at P&L Consulting, is a youth advocate. [email protected]