How Important is Policy to Palliative Care, Really?

Published on: Author: Sandy Whitelaw Leave a comment

In a new article published in July 2022 in Health Policy, Professor David Clark, Anthony Bell and myself have taken a critical look at the commonly held presumption that future developments in palliative care are heavily dependent on the precondition of ‘policy’.

This belief has become fixed in the field over the past 20 years in relation to a range of publications:

Two things roused our curiosity. First, academic policy analysts have been circumspect about the potential for policy to foster change in any straight-forward way – pointing to various policy ‘failures’ and even ‘fiascos’. Second, some researchers in the Glasgow End of Life Studies Group had already begun to examine the legitimacy of this ‘policy turn’. In a review of the initial impact of the 2014 WHA Resolution, Jose Miguel Carrasco and colleagues identified “significant structural barriers to progressing the Resolution”; David Clark and colleagues noted a “fragile and moderate palliative care assets and service infrastructure”; and in their review of the policy element of the 2017 global survey of palliative care, David Clelland and colleagues suggested that there was no observable link between policy and service development. 

So we set the question, “in what ways has policy been articulated in palliative care literature?” and undertook a systematic literature review – identifying 81 papers. The majority (60) focussed on policy in Europe and North America, based mainly on orthodox global North WHO principles. In contrast, building on a previous post-colonial critique from the group, there was little coverage of the global South – both as a geography and potentially alternative ethics that shapes palliative care in these areas. We used two resources for our analysis: 1) Bacchi’s What’s the Problem Represented to Be? framework with a premise that, “what one proposes to do about something reveals what one thinks is problematic (needs to change)” and 2) Talib and Fitzgerald’s view that policy positions tend to exist at macro, meso and micro levels. We structured our work around those three levels:

Universal Level

At a ‘universal’ level, the papers tended to create a ‘catastrophic’ policy picture – ‘crises’ centring on rapidly ageing populations, increases in chronic health conditions and a growing proportion of deaths amongst older people. We see this as an attempt to increase legitimacy for the ‘need’ for palliative care, but also critically highlight three problems – first, the data used is at times invalid (for example, population growth is slowing, rates of dementia, ischemic heart, stroke and cancers are declining and age based, healthy life expectancy indictors are rising); second, the future forecasting that accompany these claims tends to incorrectly amplify the scale of the problem; and third, there is little evidence that frightening decision-makers into policy action is effective.

Intermediate Level

We then identify an ‘intermediate’ level, where the papers included in our review portray the healthcare system in which palliative care exists. As above, this tended to be couched in rather gloomy terms – in relation to ‘burdens’ and their detrimental impacts on healthcare as it is currently configured. These included ‘financial’, ‘economic’ and ‘service demand’ burdens and again were couched in amplified terms – ‘greatly increasing’ demand for care, ‘enormous’ service pressures and ‘exponential growth’ of service costs at death. Moreover, the existing health system was also framed rather pessimistically – as ‘fragmented’ and ‘patchy’ with operational ‘gaps’ and ‘deficits’, as well as deeper antagonism towards palliative care values. Again, we develop a critical discussion of this ground, centring on a view that this ‘deficit framing’ in policy development (essentially, highlighting then fixing problems in existing systems) is far from optimal in bringing about change. 

Grounded Level   

Finally, we see a ‘grounded’ domain concerned with articulating the nature of palliative care itself. A number of features were apparent – the sheer breadth and variety of activity contained within palliative care; the idealistic and exhortatory nature of the narrative (lots of ‘should’ and ‘must’); and relatively little attention being paid to how ideals could be implemented. Critically, we point to the difficulties associated with policy pronouncements that are devoid of thought as to how they might be implemented.       


We conclude by suggesting that palliative care policy could be progressed better with attention to the following areas:

  • Do not expect significant change from policy proclamations on their own
  • See policy as one element in a complex change mix
  • Tone-down negatively oriented catastrophising
  • Base change on positive assets and constructive collaboration with healthcare and wider civic groups
  • Build in implementation and monitoring plans as intrinsic parts of policy-making
  • Utilise perspectives on policy content and processes from the global South.

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