Example 5: Integrating Legal Services into Palliative Care
Project Type: Legal Services
Kenya Hospices & Palliative Care Association (KEHPCA)
Founded in 2005, the Kenya Hospices & Palliative Care Association (KHPCA) is a national advocacy organization that works to represent palliative care providers in Kenya. The mission of KHPCA is to make palliative care available to those who are in need by making palliative care in Kenya more affordable, accessible and of higher quality.
The provision of legal services can play a critical role in improving the quality of life for patients and families dealing with life-threatening illnesses. Legal services can address human rights violations that negatively affect a patient’s health and contribute to his/her and families’ peace of mind and well-being by providing answers to urgent and often difficult questions. Integrated health and legal services allow for both holistic care and increased access to justice, taking the law out of the courtroom and private offices and into the community. Common legal needs include: “[a]ccess to health services and other social benefits, empowerment to make medical decisions, writing wills, planning for children and other dependents, [and] protecting/disposing of property.” Approximately 1.5 million Kenyans live with HIV/AIDS, and approximately 45,000 Kenyans live with some form of cancer. Since many patients with HIV/AIDS and cancer suffer from moderate to severe pain, there is a clear need to provide quality palliative care in Kenya.
KHPCA recently surveyed three hospices in Kenya to assess the medical and legal rights involved in palliative care. The study focused on patients, medical practitioners, legal practitioners, volunteers and caregivers. After learning the results of the survey, KHPCA developed and administered a project to create a more holistic approach to health care—providing health and legal services for patients in need.
Results and Lessons Learned
The survey revealed that there is limited access to palliative care; inadequate information regarding patient suffering; a general lack of awareness on patients’ rights; discrimination against those with life-threatening illnesses; and a need to review laws and policies to incorporate palliative care into the public health system of Kenya. From the study, KHPCA concluded that:
There is need to train all those involved in the care of these patients on the palliative care approaches. In such settings, there is need to have standard protocol in dealing with such patients, striking a critical balance between the ethical-legal concerns with humane approach to care. Early diagnosis & referral, the presence of family will help in modifying the disease trajectory, hence improving patients’ quality of life.
To address these gaps between legal rights and the provision of palliative care in Kenya, KHPCA has worked with several hospices to empower hospice workers, patients and their families on their palliative care rights. Additionally, KHPCA is now a key partner with the Kenyan Government in enhancing pain relief and palliative care throughout Kenya. Specifically, KHPCA works with the Kenyan Government to develop and implement national palliative care guidelines; develop curricular and training materials for palliative care; train health care providers and care givers on palliative care; conduct awareness campaigns on palliative care targeting policy makers public, media, health care personnel and regulators; advocate for legislation and policies that support palliative care; and integrate palliative care services into the national health services.
National Cancer Control Strategy: Republic of Kenya, Ministry of Public Health and Sanitation and Ministry of Medical Services, National Cancer Control Strategy 2011-2016. http://kehpca.org/wp-content/uploads/Kenya-National-Cancer-Control-strategy.pdf.
- Kenya Hospices and Palliative Care Association: http://kehpca.org/wp-content/uploads/kehpca_brochure.pdf
- Patient Information Sheet: http://kehpca.org/wp-content/uploads/pain_brochure.pdf
- Palliative Care Patients’ Rights: http://kehpca.org/wp-content/uploads/pc_rights.pdf
- What is Power of Attorney: http://kehpca.org/wp-content/uploads/attorney.pdf
- Guidelines to Making a Will: http://kehpca.org/wp-content/uploads/a%20will.pdf
African Palliative Care Association, Palliative Care: An Essential Part of Medical and Nursing Training (March 24-25, 2011, Nairobi, Kenya). http://kehpca.org/wp-content/uploads/education%20conference.pdf