Legal issues related to palliative care have been ignored in the past, leading to unnecessary distress and suffering of patients. Patients have not been made aware of their rights; that they can advocate for and demand better health care; that they can demand access to medications including pain relief; or that they have a right to write a will and to decide who will be their power of attorney should they be too ill to speak and make decisions for themselves. The Kenya Hospice and Palliative Care Association (KEHPCA), with many other partners in Kenya, is working to address these issues.
For many years, rights were not recognised nor respected in Kenya. However, over time and with changes in leadership, Kenyans are now becoming aware of their rights. The new Constitution contains an elaborate bill of rights which, among other things, guarantees the fundamental human right to health and other related rights such as the right to life. Its enactment marked the end of years of struggle and provided a useful opportunity to better articulate a legal and constitutional framework suited to advancing the right to health.
Article 43(1) of the Kenyan Constitution guarantees every individual the highest attainable standard of health and provides that no individual may at any moment be denied emergency medical care which is important to the realization of the right to life. Article 53(1)(c) specifically provides for the right of every child to receive adequate health care. It is important to note that in framing the right to health, the Kenyan Constitution adopted the right to the highest attainable standard of health recognized in regional and international human rights instruments such as Article 12 of the International Covenant on Economic, Social and Cultural Rights and Article 16 of the African Charter on Human and People’s Rights.
The first Kenya National Patients’ Rights Charter, which was launched late 2013, has included palliative care in the right to health. It states that every person has a right to promotive, preventive, curative, rehabilitative and palliative care as well as a right to reproductive health.
In order to be effective advocates for their clients, hospice and palliative care providers require information on a range of legal issues, such as inheritance law, the rights of children and how to make a will, among others. They also need the support of an effective referral network of lawyers and paralegals. In most cases, however, the task of handling all ‘nonmedical’ aspects of patients’ lives falls on a single social worker who is neither legally trained nor empowered to provide legal advice or referrals to the appropriate legal professionals. Similarly, lawyers and paralegals wishing to provide advice to people with life-limiting illnesses may not appreciate the full range of issues their clients face, nor may they be properly sensitized to working with people with HIV or other stigmatized diseases.
To address this, KEHPCA trains hospice and palliative care providers so that they are informed and empowered to give basic legal advice and referrals to patients and families. The organisation also trains lawyers and paralegals to work with hospices, as well as empowering patients by making them aware of their rights through printed resources and face to face counselling.
Sample documentation has been developed including: guidelines to making a will, guidelines to power of attorney, and a booklet entitled: Know Your Palliative Care Rights. The KEHPCA handbook of legal aspects of palliative care was drafted and reviewed by healthcare providers, lawyers and activists and launched on 17 October 2013. It is aimed at patients and their relatives, healthcare providers, lawyers and paralegals and will also make an interesting read for all concerned with patients’ and human rights.
Some hospices – including Nyeri Hospice, Kisumu Hospice and Coast Hospice – initiated legal aid clinics where lawyers and paralegal staff interested in palliative care offer free legal council to patients.
Elizabeth, a patient at Nyeri hospice, and participant at one of the legal aid clinics, said: “I have learned that I am not a victim. At the legal clinic I learned how to make a will. We realised a will is not just for terminally ill people; it is a right for everyone. I will be writing a will because I inherited my parents’ property and now I understand that I need to change the title deeds into my own name. Before the legal clinic I didn’t see why this was important, as obviously I have the right to occupy my parents’ land. Now I have started the succession process and I have almost finished this, and then I will make a will once the property is in my name and I am able to leave it to my children in my will. I have two boys and I will leave my property to them.”
KEHPCA is currently working with other stakeholders to scale up legal support to patients with palliative care needs and their family members.
Find out more about legal aspects of palliative care in Kenya by contacting the Kenya Hospice and Palliative Care Association. Further information can be found in the palliative care section of the Open Society Foundations report: Bringing justice to health: The impact of legal empowerment projects on public health.