Why we need to take action on quality palliative care by Anna Ray, Shams Syed and Marie-Charlotte Bouësseau

Efforts to strengthen palliative care have traditionally focused on expanding access to services. Access is indeed fundamental; however, we believe that it is not sufficient to focus only on access without attention to the quality of palliative care services.

Quality health services should be effective, safe and people-centred. In practise this means providing evidence-based healthcare services to those who need them, avoiding causing harm to the people for whom the care is intended and providing care that responds to individual preferences, needs and values. To realize the benefits of quality health care, health services must be timely, equitable, integrated and efficient.

In many countries around the world, palliative care services remain non-existent or in their infancy. This gap in access needs to be urgently addressed. However, there is little benefit to increasing access to care without also focussing on quality of care.

What value is there in expanding access to services where interventions are ineffective and of no overall benefit to the patient?

Worse still, what value is there in expanding access, where patients may receive unsafe or harmful care? Efforts to expand access provides a unique opportunity for palliative care services to encapsulate a culture of quality and safety at the heart of service provision right from their early stages of inception and development. The ultimate goal – high quality patient care.

 

Opportunities for the linkage of quality and palliative care  

Quality and palliative care are both embedded at the heart of the global ambition to achieve universal health coverage (UHC). The aim of UHC is for all people who need health services to receive high quality care without financial hardship. It includes the full spectrum of health services, from health promotion through to palliation. Primary health care (PHC) ensures people receive quality comprehensive care as close as feasible to people’s everyday environment.

Progress towards UHC is at risk unless urgent action is taken to increase the provision of quality palliative care. Linking action on quality palliative care into national decision making on PHC and UHC is critical in mainstreaming optimal palliative care services.

For too long palliative care services have been perceived by healthcare planners and policy makers as an optional extra; discourse and action on PHC and UHC provides an opportunity for palliative care advocates to emphasize quality palliative care as a core service within nationally defined packages of services, integrated into all levels of care.

There are several complex problems in palliative care that could benefit from a quality of care perspective.  A strong barrier to the development of palliative care has been related to fears about the use of controlled medicines. Quality of care interventions and expertise relating to medicines regulation, licensing, patient safety, supply chain management and training of healthcare workers are all essential to address the multifaceted issues controlled medicines can pose.

A quality of care lens may also be helpful to consider fundamental issues in palliative care relating to equity and timeliness. In many countries palliative care is only available to a very limited number of patients, often living in urban areas and limited to end of life care. Quality palliative care implies equitable access for all people who need it and from an early stage of the disease so it can have a real benefit in complement to other therapeutic interventions.

Linkages between quality and palliative care are bidirectional. There is significant experience and learning which can be extracted from palliative care practise to inform approaches to enhancing quality of care across health services.

Take the core quality domain of person-centred care which palliative care embodies. Palliative care services understand the value and importance of patients making informed choices about their care and patients taking a leading role in decisions about their care. In palliative care services it is routine to involve family members in care, providing information, support and trying to optimise the vast quantity of care provided at home. Palliative care services embody and embeds principles of compassion in care delivery.

If other services learnt from the approaches and attitudes exuded by palliative care providers, this has the potential to be transformative for patient care across the health system.

Learning from palliative care can perhaps also assist in providing answers to some sticky issues in quality of care. For example, palliative care is based on the integration of all levels of care with coordination between primary care and more specialised services, by nature it implies a close linkage with social services and a broad range of care givers to address the complex needs of the patients and their family.

In light of this palliative care services would be ideal services for further exploration on how quality assurance mechanisms could be applied and strengthened in community and home based settings. It is also an ideal service to consider integrated pathways of care, across all levels of the health system as well as across health and social sectors.

 

Where do we go from here?

There are significant opportunities for those working in palliative care to link with broader actions for quality at all levels of the system. Building connections between stakeholders working in both quality and palliative care is important to ensure we maximise the opportunities for synergistic learning.

Many countries are in the process of developing or refining national strategic directions on quality of care; palliative care services could benefit from engagement in quality activities that are driven by these national strategies. Alternatively, in countries with limited existing infrastructure for quality of care, palliative care may be used as a pathfinder for action on improving quality of care. Throughout, it is crucial to put systems in place to regularly assess the development of palliative care services and ensure we confident of the progress being made across the domains of quality of care.

These interlinkages between the two fields are explored in more depth in the recently released WHO resources on Quality health services and palliative care and on Assessing the development of palliative care worldwide: a set of actionable indicators.

This is an important starting point for those interested in progressing work in this area. These WHO resources describe a range of actions that can be taken by actors from the national level to the point of care to strengthen the quality and monitoring of palliative care services. We now know why we need to take action on quality palliative care and what we need to do. The task now is to move forward with concerted determination, ensuring that we learn at every step of taking action.