Over time, many concerns have been raised with regards to various legal aspects with regards to palliative care for patients and their families. In our engagement across the country with people living with serious health conditions, their families and caregivers, we’ve seen that very few have legal knowledge on their rights when it comes to their health and specifically palliative care rights.
When a person is riddled with a life threatening illness, it is at this point in their life that the reality of their state hits them. This is when it becomes imperative to identify the ideal people and institutions to take care of them, and they begin to reflect on their lives. It is also the time people start to put their houses in order, write wills, and generally prepare and plan for their families when that time reaches when they may no longer be alive. It is a hard yet necessary reality to face.
Palliative care as a health concern derives meaning from the World Health Organization (WHO) 1946 Constitution which defines health as “a state of complete physical, mental and social well-being and not merely the absence of disease and infirmity”.
Palliative care thus focuses on: quality of life, control of pain and other distressing symptoms, attention to the psychosocial, emotional and spiritual needs of the patient. Among the psychosocial needs of the patient are legal concerns which include delegation of decision making and powers of attorney, property inheritance and how to make a will, patient rights and responsibilities, and palliative care as a human rights issue obtaining from the right to health.
It is based on this knowledge that we saw it healthy to begin meaningful engagement with persons with palliative care needs in the counties. Thus, last month (October), our team in partnership with the Nyeri Hospice facilitated legal aid clinics in the Olkalou and Nyahururu clinics. These were eye opening and insightful sessions that helped us connect directly with the patients, hear them out, and offer advice and guidance on various legal aspects directly related to palliative care. We work with many volunteers from the medical and legal fields who are trained in various aspects of palliative care. In this case, we conducted the clinic with a pro-bono lawyer who greatly aided our engagement with the attendees.
The facilities are housed within the Nyandarua and Nyahururu County Hospitals, and this is a positive step that sees our advocacy efforts with the government bearing fruit, in that the government has embraced the need for special facilities in government hospitals. In these counties, KEHPCA has been actively supporting to integrate and scale up palliative care services and we are actively beefing up efforts to spread this support across all the counties in Kenya.
For these clinics, we invited all patients and caregivers that frequent the two hospitals, and we were pleased to host over 60 participants in Olkalou and over 40 in Nyahururu. This is encouraging because it shows that people want to acquire knowledge and have the necessary legal information. The interactive sessions were a great eye opener to the majority of those present, most of whom asked so many questions and sought clarification concerning issues around the writing of valid wills, disposition of property, and ways of advocating for county support for various cancer treatment modalities.
Some of the questions asked included:
“How do I write a will if the property we own is jointly owned?”
“What is the process of filing a will like?”
“Are girls supposed to be included in a will.”
“I am already sick and my husband is not, doesn’t that give him an upper hand in what happens to our estate?”
“I am a second wife and but was married while with two children. Do they claim property from their real father and from the current father?”
The above are just a few of the questions that were asked at the forum and many of these questions revolved around the do’s and don’ts of patients living with serious health conditions, how far they can legally go in treating the illnesses, the patient’s rights, and the role of caregivers especially legally.
Based on our engagements, we acknowledge the important need for the integration of legal support in palliative care programs. The Kenya Hospices and Palliative Care Association (KEHPCA), which is a national association, was formed to represent all palliative care service providers in Kenya. Its mission is to scale up palliative care services to bridge the very significant gap between those who receive services and those in need. This encompasses addressing issues of accessibility, affordability and quality of palliative care services. We have established the issues affecting patients in need of palliative care and found that there is limited skilled resource in terms of numbers of service providers and the level of skill. There is also limited availability of legal knowledge and there is a need to conduct legal education for patients and their caregivers.
Author: Kelai Wanjiru