Healthcare systems have been grappling with defining quality care for some time. Some aspects of quality care, such as equitable and timely access, are understood and broadly applicable regardless of the type of care provided. Others fit more awkwardly with palliative care provision.
For example the focus on prevention of deteriorating health or death in quality healthcare is challenging in palliative care. People receiving palliative care may get sicker or die as a natural part of the condition that they are facing. Quality care in that situation is not just about whether these outcomes occur, but what the journey is like for those who are involved.
Unambiguous metrics are sometime elusive in palliative care. This is in part because knowing whether an outcomes is definitely “good” or “bad” is often dependent on context. For example, if a person gets sicker and even dies while remaining in their home that could be “good” or “bad” depending on whether that was their wish to be there. Such wishes are often not discussed at all, and changes to existing wishes can be unrecognised making it more challenging to determine whether necessary outcomes have been achieved .
Palliative care is provided by a wide-range of people, and different metrics may apply. All clinicians (and at some point, everyone else) provide some sort of care to a person with a life-limiting illness. This makes it harder again to describe quality, as what may be quality care provided by one person, in one context may not be quality in another situation. As an example, existing quality strategies for specialist palliative care services such as the Palliative Care Outcomes Collaborative benchmarks and National Standards Assessment Program are more difficult to use when thinking about palliative care provide in other contexts. The recently updated National Palliative Care Standards with its alignment to the Australian Commission on Quality and Safety in Healthcare standards is another useful step forward in defining quality palliative care in broader contexts. However, providing this quality care, determining how this differs across clinical contexts, and assessing that it is maintained remains challenging.
How then do we start to improve the quality of the care that is provided, particularly if we consider palliative care as being broader than specialist practice? Jason Leitch (National Clinical Director of Healthcare Quality and Strategy in Scotland), suggests that the by-laws of the Delhi golf club in may be a useful place to start. This golf-club has a resident population of monkeys, and because monkeys, it turns out, are fascinated by golf and contribute to it by picking up the ball and running away with it, it has special rules to deal with this. It states that you should “play the ball where the monkey drops it.”
For Jason this means that improving quality, or your golf scores, requires you to work with the situation that you are given. For quality palliative care provision this may mean not being too overwhelmed with finding a single answer, or set of variables that defines palliative care in all contexts currently, but working with the relevant data that we have access to.
Useful here is a greater focus on patient and family feedback in defining quality. Resources such as PatientOpinion, where patients and community members can give feedback to services in an open format that systems can respond to and describe the change that has resulted, could be invaluable to this work. Quality palliative care should include recognition of the feedback that is received about care, and the care services responsiveness to that feedback. Resources which empower the community to engage services in this dialogue are a clear benefit.
Quality palliative care is a complicated and contingent idea. A single answer (or set of answers) that speaks to all contexts may be some time in coming. However, starting where we are with the metrics that we have may help us move forward.