Leading international researchers call for quality, evidence-based, palliative care

Categories: Policy.

There are huge discrepancies in the provision of palliative care across the world. Reasons for this gap in the quality of care include differences in:

  • access to essential medications
  • training of the palliative care workforce
  • recognition and support from national governments.

In a recent lecture hosted by the King’s College London Student Palliative Care Society, held at the Cicely Saunders Institute, Dr Harding and Prof Downing asked: ‘Should there be different quality indicators for palliative care in low, middle and high income countries?’

“Reflection on what constitutes quality is challenging- as well as necessary,” said Dr Harding, “a few things we can agree on without too much contention: Firstly, process measures such as coverage (as a measure of potential access to care) and availability of pain relief are essential. Second, we cannot rely on process measures alone- patient outcomes are essential. We must determine the effectiveness of care at the patient level, otherwise we risk being satisfied with policy makers, funders, advocates and clinicians reporting ‘adequate’ process measures without knowing whether this care makes a difference to patients and their families.

“It simply does not make sense to focus on processes without outcomes- we risk assuming that care is meeting its goals of improving outcomes for patients, and stopping our efforts before demonstrating that improvement.”

Dr Harding presented a review of the evidence for effectiveness and patient-centredness, dimensions of quality palliative care, focussing mainly on sub-Saharan Africa. While recognising that the majority of evidence comes from high income countries, Dr Harding noted that: “The uptake and implementation of the APCA African POS in Africa suggests that African clinical settings and associations may be providing global leadership on patient-centredness.”

He went on to consider the high incidence of HIV and cancer, and the low resources available across sub-Saharan Africa to meet this need. However, he noted that: “A recent evaluation of a novel hospital-based service in South Africa has demonstrated that the economic efficiencies reported in high income countries can be achieved.”

Dr Harding also reminded the audience that measures of ‘optimal care’ must take into account cultural needs and preferences, and must adapt and vary in response to local context.

He concluded by calling for evidence to inform and support the development of quality palliative care services in sub-Saharan Africa, saying that: “without evidence to underpin measures (such as the WHO foundation measures for a quality public health palliative care service), these dimensions of quality are less likely to be achieved.”

Prof Downing argued that, although palliative care is provided in different ways in different settings – dependent on culture, needs and resources – whilst the model may vary, the philosophy of palliative care is consistent.

She recognised that there are a variety of resources that have sought to define both what a palliative care service is and to identify quality indicators and essentials of service provision, citing the APCA Standards and the IAHPC list of essential practices in palliative care.  

To illustrate this, Prof Downing used the example of Serbia, where a model of palliative care service delivery has been developed which identifies the core components of a palliative care service at the tertiary, secondary and primary healthcare levels, along with standards of care and quality indicators.

She said: “Indicators are also defined at different levels, such as: structure/ inputs, process and outcomes. A review of the utilisation of outcome measures around the world suggests that quality indicators at the outcome level can be applied across low, middle and high income countries.”

Prof Downing shared and discussed an example of the Serbian quality indicators for the primary, secondary and tertiary levels of care, identifying the different indicators at the different levels, and asking which, if any, would be specific to Serbia.  

“As the philosophy of palliative care is the same,” said Prof Downing, “we want the same outcomes to care and we want the same quality of services. What differs is the model of service provision.

“In this lecture, we have shared examples that would be appropriate in different settings such as Serbia, Uganda and the UK, and the indicator on per- capita morphine equivalent consumption of strong opioids was discussed. Thus I propose that there should not be different quality indicators for palliative care in low, middle and high income countries. Why? Because the quality of palliative care can be applied regardless of the setting/resource; the outcomes that we desire should be similar; palliative care is a human right, and not dependent on where you live, and importantly because we must not compromise on quality – everyone around the world deserves access to quality palliative care services- we may not be there yet, but this should not prevent us from aiming high.”

The lecture is available to watch on the Cicely Saunders Institute website.