I recently signed up for a clinical trial (www.intervalstudy.org.uk). The baseline questionnaire included the SF-36. Under normal circumstances I would be at full health for all questions but, on this occasion, I was not. If the researchers go on to estimate my SF-6D score, my ‘utility’ will be suboptimal. The reason for this is that I recently lost a loved one.
There are many problems with the way we value death; some have been discussed on this blog. One which has become clear to me recently is that we don’t seem to fully take into account the effect on others of a person’s death. Whether or not we should is another question, but it’s worth considering what we might be missing.
Bereavement has been shown to cause substantial mental distress. This should come as no surprise. Whether or not this distress is sufficiently ‘health-related’ for our current method of valuing health is debatable. However, as demonstrated above, our current tools are likely to reflect this distress. More concretely, bereavement has been identified as a trigger for depression in older people. Conjugal bereavement has also been shown to increase mortality (even when controlling for changes in health care utilisation).
Clearly, bereavement due to an individual’s death can affect a person’s health-related quality of life.
Sometimes, in an economic evaluation, we might collect data regarding time taken off work due to a partner’s or a child’s illness. Usually this will be in relation to the sick person needing some extra care. It is less common to collect information about time off work due to bereavement. In the UK there is no law granting people a right to compassionate leave, and its provision is at an employer’s discretion. Nevertheless, people do take compassionate leave. Within a family, productivity losses from absenteeism could extend to weeks or months.
Losses from presenteeism are also likely to be high. A link between well-being and productivity has been identified; bereavement is likely to lead to a drop in productivity.There is some evidence on the labour market effects of the loss of a child. Not only are people more likely to lose income and lose their jobs, but they are also more likely to leave the labour market altogether.
It seems important to collect data, at least from immediate family members, regarding the effects of bereavement. I know that work is currently underway to properly capture carers’ utility, and this is likely to raise similar ethical questions. Given the evidence highlighted above, it seems that services to address bereavement could be cost-effective. Their current provision in the English NHS is limited. NICE don’t have much to say on the matter.
Fully taking the above into account raises some equity issues that need considering. If the death is unexpected there is likely to be a greater loss in productivity and utility; should interventions to prevent these deaths be prioritised? Should we prioritise interventions for people with more friends? I don’t know, but it seems likely that we should be doing things that we currently are not.