Dr. Zipporah Ali is a member of the Board of Directors of the International Association for Hospice and Palliative Care and Executive Director of Kenya Hospices and Palliative Care Association (KEHPCA). Here, she explains how KEHPCA is empowering patients to understand their legal rights.
Mary (not her real name) is a patient at the Nyeri Hospice in Kenya. Mary has breast cancer. When she had her breast removed as part of her treatment, her husband of more than 20 years threw her out of their matrimonial home. As far as he was concerned, he had married her with two breasts, and did not want her in his life with only one breast. Mary was divested of everything: she had no home, she lost her job as a teacher because of her illness and her husband had taken everything from her. But Mary had children who needed her support.
Mary is just one of the many women in Kenya who face such situations because of their illness, and because they are women. Realizing the need to empower such victims of life-threatening illnesses, KEHPCA, with support from the Open Society Foundations (OSF) and the Open Society Initiative East Africa (OSIEA) embarked on a project to train hospice healthcare providers and paralegals to support patients to understand and demand their legal rights. KEHPCA has published a handbook entitled, ‘Legal Aspects in Palliative Care’, that can be used by healthcare workers, patients, paralegals and lawyers for this purpose. Since the onset of this project, many patients as well as their relatives have benefited, Mary being one of them. Mary was given advice by the trained hospice paralegal and referred to one of the lawyers, who provides pro bono services to patients at Nyeri Hospice, to take the matter to customary law. Mary is now back in her home and has been able to support her family, as every mother should.
Paralegal services at the Nyeri Hospice and other hospices are often offered by trained paralegals that are mostly either volunteers or hospice social workers. At the Nyeri Hospice, the hospice team/volunteer paralegals and a committed lawyer from Nyeri community conduct a Legal Aid Clinic once a month. Most matters are resolved at community level, but where this is not possible a volunteer lawyer takes up the case. This project has brought a smile to many patients (and relatives).
Legal advocacy for persons with life-limiting illnesses is a recognized element of a comprehensive and holistic approach to palliative care. Palliative care patients often face complicated legal challenges such as empowering others to make medical decisions, writing wills, protecting and disposing of property, planning for children and other dependents, and securing access to health and social benefits. People living with HIV and AIDS, in particular, may face discrimination in access to employment, housing and education owing to the widespread AIDS-related stigma. Before consenting to participate in clinical trials for therapeutic drugs and vaccines, people with life-limiting illness may require legal advice or information about their rights as trial participants. Socially marginalized groups such as prisoners, ethnic minorities, migrants and refugees, and persons with disabilities, may face unique legal issues related to the provision of palliative care and to access to health care in general.
In order to be effective advocates for their clients, hospice and palliative care providers require information on a range of legal issues as well as an effective referral network of lawyers and paralegals. In most cases, however, the task of handling all ‘non-medical’ aspects of patients’ lives falls on a single social worker, who is neither legally trained nor empowered to provide legal advice or referrals. Conversely, 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. Partnerships between legal advocates and hospice and palliative care providers are thus an effective way to enhance the effectiveness of both sets of professionals, and ultimately to improve the quality of life of their clients and patients.
More about the author
Dr. Zipporah Ali has worked with KEHPCA since it opened a secretariat in 2007. Working initially as the national coordinator she is now the executive director. KEHPCA is the umbrella organization for hospice and palliative care in Kenya, focusing mainly on advocacy, training, standards, advocating for the legal aspects of palliative care, national policies, and integrating palliative care into the healthcare system at all levels of care. Dr. Ali joined the IAHPC Board in 2010 – read her bio here.