The publication of the cancer reform strategy is a sign of the government's commitment to developing world class cancer services, but questions remain over using place of death to inform management decisions.
The government's cancer reform strategy, published in December, provides a comprehensive agenda for tackling cancer.
However, one item in the strategy - using place of death as a variable when making management decisions - raises a number of issues around data collection and measurement.
Access to information is crucial to monitor performance and make decisions, and the strategy does equip us with numerous metrics. While many of these could inform managerial decisions, the place of death metric is meaningless if it is not coupled with data on the patient's choice.
It is relatively easy to gather information about the actual place of death (hospital, home, hospice, etc), but measuring whether this was the patient's choice is much more difficult.
A patient's choice can change over time, probably even more frequently (and more dramatically) towards the end of their lives.
In some cases, their ability to make an educated choice could be hindered by the difficult situation they are in. This leaves carers to agree on which of the many wishes expressed by the patient to follow.
Added to this is the difficult task of actually asking the question. All this makes it difficult to know for sure what the patient's final wishes were.
If a patient's choice cannot be ascertained, does the place of death metric have a meaning at all? If the metric is just a proxy for costs, as is often argued, how is it different from other traditional costing metrics? Decoupling the place of death from information about the patient's choice could lead to misguided managerial decisions.
For example, bed days are seen by most managers as a cost driver, and the NHS has explicit strategies and programmes in place to try to minimise unnecessary bed days. There is a risk that giving managers data on bed days used in the last year of a patient's life (when a considerable proportion of bed days are used) could encourage them to try to reduce these days, despite the lack of evidence that doing so would benefit patients.
There is very little evidence-based research on palliative care, as research studies tend to avoid outcome variables that are hard to measure. It is a difficult task to ask people who are are frail and ill to report on quality of death, quality of care, and best resolution of bereavement. Although this should not be used as an excuse to dismiss the problem, it imposes a real challenge for policy makers to back up palliative care policy with evidence-based research.
So, in the absence of robust evidence-based research, what can be done? One-size-fits-all policies would be wrong, morally and in terms of cost. More elaborated policies that discern the needs of patients will probably be weak on evidence and unable to address the fundamental issue of collecting data about patient choice.
There has been excellent work by several organisations, including the National Institute for Health and Clinical Excellence, to address this and other palliative care issues. The cancer reform strategy points out that place of death should be the patient's choice, but more should be done to emphasise the fact that these two metrics should always be read together and disregarded as standalone decision-making variables.
In an NHS that is moving towards a more decentralised decision-making model, and with empowered local commissioners dealing with relatively new challenges in their jobs, there is certainly a risk that the imbalance of information between (the readily available) place of death and (the virtually unknown) patient choice could prompt decision-makers to attribute a meaning to an isolated place of death metric.
Any commissioning guidance derived from the cancer reform strategy or the forthcoming end of life care strategy will have to be very clear on the meaning of place of death as a managerial metric and leave no room for ambiguity.