New policy to boost uptake of palliative care
For a long time, palliative care has been associated with cancer patients, but this is now changing. Patients with other long-term critical illnesses are taking up these services.
Palliative care is the support received by patients with active, progressive, far-advanced disease to improve the quality of their life.
It improves the overall wellness, including physical, emotional, spiritual, and social well-being of a patient and caregivers.
It also helps patients cope with the symptoms and stressors of disease, better anticipate and avoid crises, and reduce unnecessary or unwanted care.
Claire Akinyi Onyango, a renal patient is one of those who have been taking palliative care services. She started receiving this service in 2018 after a friend introduced her.
Back then, she was depressed after she was diagnosed with kidney failure, and on top of that, losing her job because of absenteeism. At this point, she felt her life had come to an end.
However, after she started receiving palliative care services at Nairobi Hospice and attending meetings with other beneficiaries’ things have changed. She is now one of the palliative care champions.
“At first I was also resistant because I knew palliative care is for cancer patients only.
But after learning that any person with any kind of life-threatening diseases or sufferings associated with a long-term critical illness can receive this care I changed my mind,” she says.
According to World Health Organisation, palliative care can help not only patients with cancer, but also patients with cardiovascular disease, cirrhosis of the liver, chronic obstructive pulmonary diseases, HIV, kidney failure, multiple sclerosis, drug-resistant TB and rheumatoid arthritis.
Other conditions include congenital anomalies, blood and immune disorders, meningitis, neurological disorders, and neonatal conditions. Accident survivors with serious physical illness along with mental agony also need this type of care.
Claire says apart from pain relief medication, she has also been getting other support from physical, emotional, spiritual, and social well-being.
She has also been receiving food donations when the need arises. When she is not able to visit the centre, they usually visit her at home to check on her.
And what has been preventing uptake of these services?
Claire says that lack of familiarity, discomfort with the topic, and stigma inhibit providers from offering palliative care and also prevent families and patients from asking for these services that can support their individual goals and quality of life.
“Many people think palliative care is just about pain management while a person is in the final months of their life, but this is not true.
Palliative care can be started at any time when a person has a serious illness and it addresses both the symptoms and the stress of living with a chronic illness. It also involves support for loved ones or caregivers,” Claire reveals.
Dr Zipporah Ali, former Executive Director of Kenya Hospices and Palliative Care Association (KEHPCA), says because of advocacy, palliative care has been one of the most rapidly growing fields of health care in Kenya in the past few years. However, people still have a lot of misconceptions about what it is.
“Through advocacy, we have achieved a lot. We have been advocating for the integration of palliative care into the public health care system and the universal healthcare coverage package and this has been done.
We have also created awareness about palliative and hospice care services and a good number of Kenyans now know about this care,” she says.
Worldwide, an estimated 56.8 million people need palliative care annually. Seventy eight per cent of them live in low and middle income countries, but only a small minority of those in need of such care have access to it resulting in great suffering.
In Kenya, about 800,000 Kenyans are in need of palliative care every year. Unfortunately, only about 14,552 Kenyans are accessing these services.
Recently, KEHPCA in partnership with the Ministry of Health launched the first-ever National Palliative Care Policy.
This policy will be a national guide and key reference point towards attaining the highest standard of palliative care in the country.
The policy provides a framework for implementation of palliative care as part of Universal Health Coverage and guiding tool for governments to finance the service for all people in need in the country.
Promotion and advocacy
The policy was created following a survey between August 2018 and January 2019 to identify gaps in palliative care services provision in the country.
Among the gaps include that services are not adequately offered in across all healthcare levels and there is inadequate capacity in personnel to offer this care as well as the lack of awareness in the community on the importance of palliative care and inadequate access to the services.
Some of the priorities in the policy include creating awareness of the services, creating a leadership and governance structure at national and county levels and promotion of accessibility to essential palliative care services, medicine and commodities.
Training and deployment of human resources and health care financing are also included.
Speaking during the policy launch, her Excellency First Lady Margaret Kenyatta revealed that it is even more discouraging to note that these services are severely limited among children.
Because of that she urged all stakeholders to find solutions that will accelerate the integration of palliative care across all levels
“Access to palliative care is even more limited among children with less than five per cent of paediatric patients having access.
These include patients affected by both communicable and Non-Communicable Diseases (NCDs), a burden that continues to weigh heavily on Kenya’s health system,” said Kenyatta.
According to her, with such low numbers, there is a need for advocacy, awareness creation, existing myths demysification, setting up of new centres, and strengthening of the healthcare system to ensure more patients have access to palliative care services.
According to Ali, though advocacy for palliative care can be done at both the international and national levels, the most influential space is the national level of every society.
This is because advocacy at the national level will help policymakers ensure there is universal palliative care training among healthcare professionals who provide care to patients with chronic progressive diseases.
Also, this will help modify structures, processes, and outcomes in the healthcare system to allow patients with more complex problems to access palliative care services easily.
“Because of advocacy, the government has now integrated palliative care into the country’s health care system.
Currently, 33 out of 47 counties have successfully integrated palliative care into their health system.
Also, this has seen the inclusion of palliative care in the core curricula for undergraduate medical and nursing curricula,” adds Ali.