Commentary: Reach beyond metaphor to assess valueBMJ 1996; 313 doi: https://doi.org/10.1136/bmj.313.7050.154 (Published 20 July 1996) Cite this as: BMJ 1996;313:154
- Ian Harvey, consultant senior lecturera
The case of this child could, like that of child B, have easily developed into a contested issue. The prognoses were equally dismal and the projected cost of child B's transplant was actually less (£75 000)1 than that of one year's home ventilation. Yet the purchaser's agreement to fund the child's care should not be taken to mean that there are no thorny issues.
Firstly, let me deal with matters of fact. The cost of home ventilation for this child is estimated at £160 000. Was this greater or less than the cost had she remained in hospital? Published reports on this subject, mainly from the USA, generally assert that costs to health care purchasers are lower at home,2 but this is critically dependent on who delivers home care. Substantial input from qualified nurses can raise home ventilation costs to hospital levels.3 Furthermore, even if we assume that home care costs no more than hospital care, for the purchasing authority the home care expenditure still adds to the (presumably) unchanged expenditure on the local provider's intensive care unit.
Matters of resource use bring us to some of the key phrases used in this case study. Is it true, for example, that misery cannot be measured, even approximately? Was home ventilation the right course of action to follow “whatever the cost”? Despite Dr Davies's evident distrust of attempts to “measure misery” or use a quality adjusted life year approach to allocating resources, related ideas actually seem to inform his own judgments. How else, for example, could he conclude that this child was happier at home than in hospital other than by judging (or measuring) on an ordinal scale her level of misery? He intuitively generated his own informal “QALY” by trading improved quality of life at home against probable longer survival in hospital and found in favour of home care. And is there really no cost which would dwarf the reduction in misery obtained by home transfer? Would the health authority's total annual budget have been an acceptable price to pay? If the answer is no, then clearly the phrase “whatever the cost” is not to be taken literally and there must exist a “point of indifference” at which cost and benefit are in balance. This is not pedantry—it is important to reach beyond the language of metaphor to identify underlying, and sometimes paradoxical, ideas.
There is a growing international acceptance that health care resources—however generated—will be inadequate, forcing choices to be made between competing therapies.4 Public health physicians working in purchasing authorities daily face dilemmas in essence no less difficult than those described in this case—with the key difference that they must choose between groups of individuals, rather than individuals themselves. There is much current debate on whether rationing should be carried out explicitly,5 either under the auspices of a national forum or under local control (such as the committee on costly cases mentioned here) or implicitly.6
Public consultation exercises suggest that there is strongest support among the general population for expenditure on treatments for children (such as this child) with life threatening illnesses, with lowest priority attached to expenditure on those over 75 years.7 If such public consultation becomes more common—and if notice is taken of its findings—the clinical action followed here may actually receive explicit popular encouragement. Conceivably British paediatricians could even find themselves having to defend their more conservative decisions not to ventilate children. An example is children with Duchenne muscular dystrophy, who have not traditionally been considered candidates for ventilation in the UK but who are in the USA.8 What, it might reasonably be asked, is the material difference between a child with polyneuropathy in respiratory failure and one with muscular degeneration in respiratory failure? They might well be judged equally worthy of this “costly but beautiful deed.” If they are not so judged then the reasons may need to be made explicit.