Monitoring, evaluation and learning (MEL) in the palliative care sector challenges conventional ideas about what should be measured, who should measure it and to what end.
Palliative care is recognised for reducing cost burdens for health systems, patients and families. Nevertheless, end-of-life care occupies an uneasy position in a healthcare system that typically values metrics like lives saved, diseases cured, hospital bed occupancy and adherence to treatment protocols. These measures are of little use in a healthcare context where the goal is not about prolonging life at any cost, but about ensuring that the time individuals have left is as meaningful, pain-free and dignified as possible.
How to measure a ‘good death’
Palliative care MEL specialists face the challenge of measuring a ‘good death’ and capturing the dignity, comfort and emotional support that define quality end-of-life care. “The bottom line is that you can’t ask someone who has died whether they’ve had a good death,” comments Warren Oxford-Huggett, accreditation manager at the Association of Palliative Care Centres (APCC).
Nonetheless, palliative care MEL strives to get as close as possible by employing three primary approaches: assessing the quality of palliative care, collecting statistical data and surveying patient-reported outcomes.
Former head of the University of Cape Town Palliative Care Unit, Associate Professor Emeritus Liz Gwyther, explains how the Hospice Palliative Care Association, now the APCC, began to develop quality of care measures in the 1990s. These measures have evolved into a comprehensive set of standards for governance, management and care.
Alongside these measures is a data management system that details patient population statistics, ranging from demographics to average duration of care and service provision.
Finally, patient-reported outcomes surveys address a unique aspect of palliative care: the anticipated outcome of the service is the patient’s death. “We try to make sure that people are aware that palliative care is not actually about the dying process but about living as well and as actively as possible with a serious, life-threatening illness,” explains Gwyther.
This approach to wellness includes effective pain management, the ability to engage with social circles and the opportunity to address personal affairs.
The Palliative care Outcome Scale (POS), which is commonly used, assesses physical, emotional, spiritual and support needs.
The value of subjective measurement
Palliative care is about much more than just data and information. Qualitative assessment contributes to a deeper understanding of the systems, processes and development beyond mere numbers. Oxford-Huggett explains the subjective nature of feedback in this sector: “Anecdotal engagement provides the storytelling. If you ask a nurse to assess a good death, it would elicit a different response than from a social worker. And that would be very different from the response from a spouse, sibling, or child. This situated feedback provides the wide-angle lens perspective that defines the clinical, emotional, spiritual and quality of service demanded of quality palliative care.”
Since the grief process plays a significant role in reflecting on the quality of end-of-life care, there is value in maintaining extended feedback periods. “At a local level, we strongly encourage our members to conduct outcome surveys with the family, regardless of whether it takes place three, six or even 12 months after the patient has died,” notes Oxford-Huggett.
Opportunities for supportive palliative care tech innovation
One of the primary MEL challenges Oxford-Huggett unpacks is maintaining comprehensive data. The high cost and rapid redundancy of custom software limit meaningful local and national data collection that helps guide strategic direction and future service delivery.
The lack of readily available, specialised and inexpensive software that can withstand the rapid redundancies places pressure on palliative care centres to take on data collection responsibilities amid limited sector resources. The availability of software that captures the many facets of palliative care would provide invaluable data to the health sector.
Gwyther recommends that the sector build on existing technology to support palliative care. The public sector utilises the Vula mobile application for referrals and patient records. Existing applications, based on Department of Emergency protocols, assist doctors in connecting teams caring for specific patients. Additionally, the Association of Palliative Care Practitioners of South Africa employs WhatsApp referral groups in limited locations.
Gwyther also suggests the implementation of a “patient-held palliative care card” that would allow any healthcare provider attending to them to review treatments and patient directives.
Lessons from palliative care MEL
A key takeaway from palliative care is the value of metrics that prioritise beneficiary needs, asserts Gwyther. Shifting away from measuring what is easy to count and, instead, focusing on what matters to the person receiving care, requires a more flexible, participatory and empathetic approach to evaluation strategies.
Development work is increasingly addressing multidimensional problems. As palliative care MEL takes into account the broader clinical, social and emotional contexts, it reveals potential gaps in less holistic social development programmes.
“Palliative care is never just about the patient. It is about the household. There are as many recipients of care as the patients themselves,” asserts Oxford-Huggett.
The lessons from palliative care MEL extend far beyond end-of-life services. They provide a guide to achieving meaningful impact measurement across social development. Prioritising beneficiary needs over convenient metrics, embracing both qualitative and quantitative data, and recognising the interconnected nature of human experience, organisations can evolve their evaluation frameworks to measure what genuinely matters.
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