Arbitrary vs discretionary decisions
Arbitrary vs discretionary decisions
Abstract and Keywords
This chapter presents a 1990 commentary on care for seriously compromised newborn infants. It considers questions about how decisions should be made about initiating costly, all-out modern treatment for such infants, given the lack of information about the relative impact of death (compared with survival) of these smallest infants on families with poor circumstances, single-parent families, after unwanted pregnancy, in families with drug-addicted parents, etc.
We must recognise that even when clinicians make decisions based on the best evidence available, their own ethical, moral and religious values influence their medical decision-making.1
The Nuer tribe of East Africa is said to be unable to cope with defective newborn infants.2 They classify strange neonates as hippopotamuses, mistakenly born to human parents. The ‘animals’ are put gently into a river, their ‘natural habitat.’ Nuer infants are not killed; the tribe says, in effect, we merely do what is proper for young hippos. The moral code of the Nuer, which prohibits the taking of a tribe member’s life, emerges unscathed in this solution to an ancient question about newly-born babies: What are the conditions for full membership in the family and community?
A Nuer-like end result was achieved in developed countries, when most babies were delivered at home. Midwives and doctors, when on the family’s territory, were acutely aware of the immediate and long-term social consequences of their acts. They rarely made attempts to rescue a very small or a malformed infant. Within the privacy of the home, the early deaths of flawed babies were often reported as ‘stillborn.’
Until fairly recently, neonatal deaths were seen as the ‘expected’ reproductive losses—similar in every way to the large initial mortality in all species. More specifically, it seemed inhumane to prolong the lives of seriously compromised babies. The metamorphosis of a newborn infant from biological creation to social being and family member took place only when nurturing care was provided by the family. Few parents, in the past were willing to place the interest of a newborn child with significant biological imperfections ahead of all others in the family.3 There was a fairly general, but silent, understanding that the newborn infant had only a tentative claim to full rights of family membership.
(p.42) It is a matter of some interest that a gradual shift in perspective and in action took place when decisions about the care of marginal infants were taken over by well-meaning doctors, and early nurturing care was provided in medical settings. For example, when the campaign to rescue prematurely-born infants was started by French obstetricians in the third quarter of the last century, the small ‘weaklings’ were transferred to special facilities for expert care.4 Here skilled nurses provided warmth (in newly-designed incubators), cleanliness, careful feeding, and attentive care to minimise exertion of the weak babies. If favourable conditions for survival are provided, the caretakers reasoned, those infants ‘meant’ to survive would do so. This focus on infant’s outcome, away from social impact on the family, was the beginning of a change in viewpoint that has persisted to the present day.
For many years there was resistance to the systematic approach for the care of ‘weaklings.’5 Many observers had serious doubts about the advisability of making extraordinary efforts to keep marginally-viable newborn infants alive. Although it might be praiseworthy to try to save these new lives, they argued, the efforts should be condemned as shortsighted. At the turn of the century, caretakers were urged to recognise that standing behind each of the feeble infants there was, very often, a family problem, ultimately a community problem, poverty, bad housing and associations, ignorance of the ways and means of making a clean and healthy life on scant means.
The explosive development of neonatal/perinatal medicine and escalation of intensive treatment of babies on the margins of intact viability, during the past few decades, have re-ignited earlier questions about child-centred measurements of outcome. There is renewed concern about the consequences of rescuing seriously compromised newborn infants without regard for the social circumstances of the family. The dilemma is now magnified several times over because the machinery of rescue has made it possible to keep ever more fragile infants alive who have an ever larger need for on-going medical and social support. For each increment of success in prolonging the lives of the smallest infants, the cost in resources has mounted dramatically.
How should decisions be made to initiate all-out modern treatment for the most costly infants (under 1 kg birthweight)?6 We are largely ignorant of the relative impact of death (as compared with survival) of these smallest infants on families in poor circumstances, in single-parent families, after unwanted pregnancy, in families with drug-addicted parents, etc. The area of uncertainty might be narrowed if we could marshall the courage needed to submit some of the hard questions about decision-making to formal evaluation.7 For a start, we might ask: Do arbitrary decisions at the time of impending birth of the smallest babies (presumption to initiate all-out treatment in most cases) result in improved long-term social outcomes in affected families, as compared with (p.43) discretionary decisions (after discussion with parents, and based on their wishes, initiate either all-out treatment or non-invasive supportive care)? In order to explore a question with family status as the primary outcome of interest, it is not enough to examine the condition of families of infants who survive. Long-term social outcome in families in which the infant did not survive now becomes relevant.
Families and communities need to be thoroughly convinced of the social effectiveness of unbridled medical salvage. A direct comparison of the social consequences of carrying out either parents’ wishes or doctors’ orders is very threatening to conventional wisdom. It draws attention away from the professional question (How many neonatologists are needed?8) and focuses on the question of public interest (How many neonatologists are wanted?).
Public concern about the level of investment of resources for neonatal rescue has increased as the costs of the activity have mounted. And loud questions are now asked about equality in the provision of overall medical care, taking into account the competing claims of individuals, families, and communities. Williams has made a timely plea1 for the development of evidence-based ethics to guide judgements about care: factored decisions that are weighted to reflect the marginal social value of health gains to different people. The quantitative approach, he proposes, ‘might help us develop a notion of “statistical compassion” (the ability to sympathise with the plight of the unfortunate but anonymous many) to help counteract the excesses of individual compassion (sympathy for the unfortunate but identifiable individual) which results in such severe inequity at present.’
The myopic never-say-die preoccupation of today’s rescue industry brings to mind the apocryphal story about the man who went to a psychiatrist and complained, ‘My brother is crazy; he thinks he’s a chicken.’ ‘Why doesn’t your family do something about it?’ the doctor asked. ‘We can’t,’ was the hapless reply, ‘we need the eggs.’