Day two (10thAugust 2018) of Cairdeas and the Makerere & Mulago Palliative Care Unit’s (MMPCU) 10thanniversary conference was opened by Professor Liz Grant, from the University of Edinburgh. She began the day by highlighting how partnership work in Kampala has influenced, contributed to, and shaped palliative care globally. Prof. Liz framed palliative care in the context of the Sustainable Development Goals(SDGs); that collection of 17 global goals established and agreed by the United Nations Development Programme. She argued that good models of palliative care – such as those being pioneered by Cairdeas and MMPCU - help achieve SDG number three: Good health and wellbeing for people. Dr Grant also suggested that good practice within palliative care is replicable acrosswider health systems, and that the palliative care model in Uganda is an excellent response to the call for universal health care.
Dr. Jackson Amone then described the journey of palliative care for those with a serious or life limiting illness. He made clear the importance of a palliative approach throughout the course of an illness, but did not skirt the issue of the significant gap, globally, between the need and the availability of palliative care services. Dr Amone commended Uganda’s Ministry of Health in its commitment to ensure a consistent and reliable supply of free patient morphine.
Ensuring that the right care is available in the right place and at the right time, were elements of a conundrum explored by Dr. Sam Guma. He stressed the importance of continuum of care and explored factors that affect the delivery of a quality service, including timely referrals and the availability of services.
A discussion on the importance of the spiritual component of palliative care was led by Ivan Odiit Onapito. Ivan described a study that was undertaken with patients in Mulago Hospital to identify their feelings from diagnosis to treatment. The study raised several key themes including the importance of listening to the patient and the value of being present. Ultimately, it made clear the enormous value to be had in listening to patients’ stories. He concluded that spiritual support is an essential part of palliative care and he made a strong recommendation for ongoing mentorship for spiritual providers in palliative care to help them become better versed and equipped in the palliative approach.
A number of speakers delivered papers on palliative care in relation to specific diseases: Palliative care in end stage renal disease (Dr Peace Bagasha); Integration of palliative care into standard oncology (Dr Henry Ddungu); and Experiences of patients living with heart failure (Dr Elizabeth Namukwaya). Each concluded that holistic care is essential, and presented evidence that integrating palliative care results in improved outcomes across the board.
The practice of integrating palliative care was described Dr Nahla Gafer in a set of cases she presented from her work in Sudan. She highlighted how her work is bolstered by an effective programme of training and the partnerships with CairdeasIPCT, MPCU and University of Edinburgh.
Palliative care and mental health, palliative care and refugees, and palliative care and the elderly were three thematic areas addressed respectively by Professor Chitra Ventkateswaran, Vicky Opia, and Dr. Harriet Nankabirwa. In each presentation, compelling arguments were made to: address the mental health burden evident in palliative care; integrate palliative care into humanitarian emergencies; provide comprehensive geriatric assessment for older patients needing palliative care.
MPCU senior advisor and PcERC chair, Dr. Mhoira Leng, lent her full support to Dr Marcia Glass’s call to continue to establish, strengthen and build on the opportunities emerging from the many partnerships that are in place and have been cemented as a result of the conference.
“What a privilege to share the work of MPCU and our partners. It is exciting to see all that has been achieved but particularly to hear from those affected by chronic illness such as Helen. We need to be a voice for the voiceless and ensure we offer care with compassion and quality. As we launch the Palliative care Education and Research Consortium (PcERC) we move forward with the vision of palliative care for all.”