By Dr. Mhoira E. F. Leng (Uganda)
After several decades of development and huge progress in understanding the paradigms and philosophy of palliative care we are still left with important questions. Who needs palliative care and how do we define a palliative care patient?
Palliative care has moved from care of the dying or end of life care to being recognized as holistic care for patients and families that is relevant for those living with chronic, life limiting diseases. A recent review of the literature shows a lack of consensus at the research level as to the definition of palliative care [1]. Work to identify when palliative care should be introduced has made significant progress [2]. However, in a sub-Saharan African setting these issues are stark. How do we understand and attempt to define those who need palliative care? [3] How do we understand this in the context of the dual epidemic of communicable and non-communicable disease where disease interventions such as antiretroviral therapy can change the prognosis from inevitable and soon terminal care to the management of a chronic disease? This of course must be considered in the context of resource limited health systems, scare health care personnel capacity, poor primary care services and the late presentation of disease.
Adding to this challenge is the need to integrate palliative care into strengthened health systems to achieve sustainable coverage and to ensure that quality palliative care becomes an integral part of health care delivery. Identification of palliative care interventions that do not include specialist referrals is problematic and many mapping estimates simply record stand alone or specialist services.
The Makerere Palliative Care Unit (MPCU) seeks to support integrated palliative care within the national referral hospital site, Mulago, in Kampala. This 1600+ bedded hospital is also the only cancer treatment site in Uganda. An initial needs assessment (2009) [4] was undertaken by reviewing case notes on a sample of medical and surgical wards to identify those with life limiting disease. Interviews were then conducted using a standardized tool that included symptoms assessment, APCA Africa POS, demographics including social deprivation assessments and performance status. The results showed 45% of all the in-patients have life-limiting illness, 70% experience unrelieved pain and other symptoms and many more are faced with social challenges. Few had access to specialist palliative care support. Since then, a hospital census of every in-patient revealed palliative care needs of 37%. Therefore models of palliative care need to promote palliative care integration and ownership as well as clear clinical pathways within, and outside, of the hospital setting. To date the specialist team sees 550 patients per year but more significantly has integrated palliative care into the undergraduate and postgraduate curriculums [5]. Every postgraduate in internal medicine and family medicine has a comprehensive training in palliative care. A program of 27 “link nurses” throughout the wards including burn unit, sickle cell clinic, oncology, radiotherapy and medical and surgical wards now see more than 1684 patients per year. They recorded interventions that include referral rates of 20% for specialist support. Morphine consumption has increased by over 300% from a per capita average of 0.9 mg to 3 mg.
To quote our link nurses; ‘Excellence is not a skill it is an attitude. I had a negative attitude towards palliative care because I thought it was only care for dying patients. But after training I developed a positive attitude because palliative care improves the quality of life of patients and their families.’ ‘Previously when I saw the palliative care team come to our wards, I thought it was their work, but now I realize it is our work, not theirs’
It is great start and we look forward to sharing with you other models of integration particularly in government institutions and further developing our language of palliative care.
[1] Mechelen MV et al. Defining the palliative care patient; a systematic review. Pall med 2012
[2] Murray SA et al. Palliative care in chronic illnesses: we need to move from prognostic paralysis to active total care. BMJ 2005.
[3] Grant L et al. Palliative care in Africa since 2005: good progress, but much further to go. BMJ Support Palliat Care 2011.
[4] Lewington J et al. Provision of palliative care for life-limiting disease in a low income country national hospital setting: how much is needed? BMJ Support Palliat Care 2012
[5] Leng M. Networking and Training in Palliative Care: Challenging Values and Changing Practice Indian. Journal of Palliative Care 2011
Dr Mhoira Leng is the Head of Palliative Care Makerere University, Kampala, Uganda, and Medical Director Cairdeas International Palliative Care Trust
Email: [email protected]
Dr. Leng is a Member of the IAHPC Board. Her bio may be found here.
By Dr. Zipporah Ali (Kenya)
Palliative care has taken a big step in Kenya in the last seven years since Kenya Hospices and Palliative Care Association (KEHPCA) became operational. In 2007, there were only about 14 institutions providing hospice and palliative care to a population of over 40 million. Through strong advocacy at the national level, palliative care services are now more widespread with over 70 institutions providing palliative care making it possible for more patients and families to access these services.
KEHPCA has partnered with the Ministry of Health in Kenya to integrate palliative care into the public health system. Twelve government hospitals now have established palliative care services, while over 30 are in the process of integration. The advocacy work has also extended to medical and nurse training institutions where palliative care is integrated into their respective undergraduate training curricula thus ensuring that all doctors and nurses that graduate have some basic knowledge and skills in palliative care.
Paediatric palliative care is still a big challenge. Recently, Kenya Hospices and Palliative Care Association started focusing on advocacy and training for paediatric palliative care through the support of 4 major government hospitals in the country. Services are also being slowly integrated into the health care system. KEHPCA has worked tirelessly with health care professional/providers, lawyers and paralegals, patients and their families to address the legal aspects of palliative care and advocate for palliative care and pain relief as a basic human right. We also addressed the importance of patients’ legal needs and how patients can be supported to address these needs.
Integration
Palliative Care Training and Education integration
KEHPCA has advocated and worked tirelessly with medical, nursing, dental and pharmacy training institutions in the country to have palliative care integrated into their respectful undergraduate curricula and this has been successful. The core nursing curriculum for BScN has 45 hours devoted to palliative care, the Kenya Medical Training Institutions (KMTC) has 12 hours of palliative care training in their core curriculum, MoH Teaching and Referral Hospital has 3 weeks of palliative care and chronic diseases in their curriculum. Many other training institutions have included 12-24 hours of palliative care into their nursing curricula. KEHPCA is working closely with KMTC to integrate palliative care into all their paramedical courses.
Although Kenya does not have a free standing policy on palliative care, palliative care has been recognised as an important element of care that has to be integrated into all public health care systems so that many patients can access it. Below is a list of accomplishments through KEHPCA leadership:
KEHPCA’s advocacy work has used the human rights approach to address issues of stock outs of essential medicines like morphine; advocated for a task force on palliative care and pain relief which has key ministry of health officials on it, has changed the attitude of key officials at the MoH so they can understand and advocate for palliative care, thus making them champions of palliative care.
Dr. Zipporah Ali is Executive Director, Kenya Hospices and Palliative Care Association (KEHPCA)
Email: [email protected], [email protected], [email protected]
Website: www.kehpca.org
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