It is important that our report contains new evidence not just analysis of existing evidence.
We have limited resources for research, but we should try to identify questions that we might be able to answer in the time available by systematic review, surveys, or collection of new data.
Perhaps too we might develop new hypotheses that could be tested later, perhaps by others.
Here are some preliminary questions. There are many more to come.
Please suggest other research questions.
- How might the quality of dying be better measured? (At the moment Britain, for example, uses place of death as a surrogate–but this is widely identified as unsatisfactory. NHS England and the Academy of Medical Sciences are interested in metrics relating to the end of life: one measure is “proportion of patients having three or more emergency admissions in the last three months of life”–a measure perhaps more to do with the performance of health services than the experience of individuals.)
- Allan Kellehear says that “dying is easy” and that most suffering occurs between diagnosis and death and in the grief that follows. What evidence is there on this? (The Commission on Palliative Care is developing the idea of SALY–“suffering adjusted life years.”)
- How do resources devoted to palliative care relate to the suffering?
- Can we define and measure overtreatment? As Sam, says one person’s overtreatment might be another’s undertreatment.
- What is the willingness of individuals and their families to pay for expensive treatments at the end of life? Or, more relevant in tax or insurance funded systems, what are citizens willing to forego in order to make expensive end of life care available? (This is a question that might be addressed by surveys, more sophisticated measures of trade-offs, or a citizen’s jury.)
- Can we devise a score of “experience of end of life and grief” (perhaps including nursing home experience) that we might apply across the world (using perhaps the members of the global palliative care network) to compare with the Economist’s measure of the quality of palliative care? (I’ve attached a copy of the index.)
- Do doctors briefly reminded of their own deaths before making decisions on treatment for patients tend to be more aggressive? (The answer seems to be yes.) In contrast, do doctors who are involved in longer reflections on death and dying including their own deaths, make less aggressive treatment decisions? (The answer seems to be yes.) Sheldon is preparing a working paper on this, and there may be important implications for the training of doctors and all health workers.)