Family interests and medical decisions for children

Abstract Medical decisions for children are usually justified by the claim that they are in a child's best interests. More recently, following criticisms of the best interests standard, some advocate that the family's interests should influence medical decisions for children, although what is meant by family interests is often not made clear. I argue that at least two senses of family interests may be discerned. There is a ‘weak’ sense (as the amalgamated interests of family members) of family interests and a ‘strong’ sense (that the family itself has interests over and above the interests of individuals). I contend that there are problems with both approaches in making medical decisions for children but that the weak sense is more plausible. Despite this, I argue that claims for family interests are not helpful in making medical decisions for children.


| I NTR OD U CTI ON
When medical decisions are made for children, the justification is usually that the choice is in the child's best interests. 1 However, the best interests 2 standard has been criticised 3 and has led to other suggestions, amongst these that a child's medical decisions should be based on family interests. 4  . and what about the child's best interest. Bioethics, 26(8), iii. 2 I will use "interests", "welfare" and "well-being" interchangeably as other have. 3 For example ". . .while the BIS [best interests standard] has potent rhetorical power, its invocation and application is actually quite inconsistent, and that ultimately, it should be rejected". Salter, E. K. (2012). Deciding for the child: A comprehensive analysis of the best interest standard. Theoretical Medicine and Bioethics, 33(3), 180. 4 Amongst examples: ". . .allows them [the parents] to act for the well-being of the family. . .When the self-regarding interests and goals of a child conflict with the group goals of the family, the parents may compromise the interests of the child. . ." Ross, L. F. (1998). Children, families and health care decisions (pp. 44). Oxford University Press: Oxford; "It has been suggested that physicians should take a greater role in encouraging and supporting family-centered decision-making. . ." Hardart, G. E., & Chung, W. K. (2014). Genetic testing of children for diseases that have onset in adulthood: The limits of family interests. Pediatrics, 134, S105; ". . .familial considerations must be taken into account in medical decision-making, and that sometimes these considerations have a greater claim on health care professionals than do the best interests of the pediatric patient" Lindeman, H. (2014). Why families matter. Pediatrics 134, S98. ". . .it is permissible to put the interests of the family above those of the infant. . ."; Strong, C. (1984). The neonatologist's duty to parents and patients. The Hastings Center Report 4(4), 13. "The aim of intensive care should be to treat the family, not just the patient."; Inwald, D., Jakobovits, I., & Petros, A. (2000). Brain stem death: Managing care when accepted medical guidelines and religious belief are in conflict. British Medical Journal, 320, 1266-1267. And there are empirical claims that this is what does happen in practice: "An approach that considers family welfare rather than purely best interests of an individual child is a model that is used by the majority of paediatricians; Larcher, V., Craig, F., Bhogal, K., Wilkinson, D., Brierley, J. (2015). On behalf of the royal college of paediatrics and child health. Making decisions to limit treatment in lifelimiting and life-threatening conditions in children: A framework for practice. Archives of disease in childhood, 100(Suppl 2), s11; ". . .there is broad recognition that families routinely make decisions that consider communal it is rare that a clear exposition of family interests is given. Sometimes the suggestion is that parents should be involved in making decisions. Sometimes the suggestion is that parents should choose the child's interests 5 and sometimes the suggestion for family interests is broader than this, extending even to discussion with 'religious authorities'. 6 If family interests are to be invoked, there would need to be a clear sense of what is meant.
Contemporary philosophers have turned their attention to groups: Group agency, group autonomy, group intention, group rights and so on, characteristics that are more usually ascribed to a person. 7 Although these concepts may be clear when applied to individuals, what they mean when applied to groups is not. There are many difficulties to be overcome, not least accounting for the very different sorts of groups that exist (extending from the mob of the French Revolution to the Board of Volkswagen). Claims are made for family autonomy, interests, rights and so on, but recent discussions of groups rarely consider the family. That the family does not appear in discussions of group rights, group agency and group autonomy is surprising, because of the ubiquity of families and their importance in society. This stands in contrast to the frequency with which those discussing families make references to these characteristics. In the absence of a clear characterisation of the terms and in particular what they mean when 'family' is attached to them, the claims could be treated as merely metaphorical.
However, those that use them do not seem to use them metaphorically. I will concentrate my criticisms on family interests.
In this article, I will demonstrate that different authors in the medical literature have had different conceptions of family interests. I distinguish a weak and strong sense of family interests, arguing that the weak sense of family interests is more defensible, but even so family interests are unhelpful when medical decisions must be made for children.

| FA M I LY I N TER E S TS
When the problems with the best interests standard for children's medical decisions are recognised, some people appeal to the concept of the family's interests: ". . .what is best, all things considered, for the family." 8 Moving to family interests may solve three problems with the individual child's interests. Firstly, the child's best interests' standard has been criticised for being too demanding. This criticism can be sidestepped by appealing to the family's interests. Secondly, as it is unlikely that an action in the best interests of one child will be in the best interests of all family members, it is unjust to prioritise the interests of one child. If so, we should amalgamate the interests of family members. Thirdly, the concept of family interests recognises interests that parents (and other relatives) 9 have in their children (and older children have in the wellbeing of their relatives). This is all well and good, but family interests are often brought in as a solution to the problems posed by the child's best interests without a clear description 10 . In the absence of a clear conception of family interests, the claim that family interests will allow the resolution of contentious medical decisions is unfounded.
The claim that decisions for children should be based on family interests should be separated from the claim that parents should make a child's medical decisions (a claim for parental authority). Although (following on from the way that individuals are often taken to be the only ones capable of determining their own interests) there is a sense in which the family must select the content of the family interests (the family determines the family traditions, concerns and priorities), 11 there could also be an 'objective' sense of family interests so that those outside the family are at least as well placed as those inside the family to decide how best to maximize family interests (the disadvantages of those outside the family in having less information about the family may be balanced by their detachment). This is analogous to the way that an individual may be mistaken about their own interests. I do not intend to argue whether interests are subjective or objective, 12 just to argue that a claim that decisions should be based on family interests is separable from the claim that parents should make medical decisions for their child.
The first problem to overcome in arguing for family interests is to understand what is meant by 'family'.

| The lack of a clear definition of a family
The family, and conceptions of a family, are not static. Nussbaum notes ". . .Family is itself a political institution that is defined and shaped in fundamental ways by laws and social institutions." 13 This is  Until a few years ago, single unmarried mothers were stigmatised as 'fallen women', and coerced into allowing adoption for their children, having been persuaded that adoption was best for both mother and child. 14 Now, women commonly lead single parent families. Twenty per cent of NHS Trusts fund IVF treatment for single women. 15 Private IVF clinics target single women. 16 Single motherhood, once humiliating for the mother, is now a deliberate choice. Another example is that homo- That there is not a stable recognized family structure undermines the claim that there can be a conception of family interests.
Those who argue for family interests could overcome the problem by stipulating a clear definition, but they don't. Ross' conception is ". . .family is an intimate group in which the parent-child relationship and its attendant obligations are central. This conception includes some legal families and excludes others. It also includes many nontraditional, non-legally sanctioned families. The intimate family is a moral and not a biological or legally defined relationship." 20 In excluding legal definitions of the family, family interests become impracticable for use in applied ethics because contentious decisions regarding family interests will go to law for resolution. Schoeman is similarly nonspecific ". . .'family' an intense continuing and intimate organization of at least one adult and child, wherein the child is extensively and profoundly dependent on the adult, in which the adult supplies the child with its emotional and material needs, and in which the parent is dependent on the child for a certain kind of intimacy. This relationship is to be understood as moral, not biological." 21 Some characterizations are almost deliberately obscure. For example the Nelsons write ". . .letting go of the idea that families have a defining essence. . .families as people configurations that have at least some of a rather wide array of characteristics, no one of which is definitive, but most of which will be present to one degree or another". 22 And from another author ". . .what is the 'family'? As I will use it here, it will mean roughly 'those who are close to the patient'. . .'Family' so defined will often include close friends and companions. It may also exclude some with blood or marriage ties to the patient." 23 Here Hardwig conflates friends and family. Sometimes friends are more knowledgeable about a person's values than are distant family members, but this does not mean that friends and family members should be confused. Taylor-Sands recognizes the many different forms that families can take and settles on ". . .at the broadest level, a group of persons in a household who regard themselves as family." 24 This does not work for an infant, who cannot regard herself as a member of a family.
Through all of this there is no clear sense of "family", which is needed by those who argue that family interests should play a role in 14 An Australian Government report into adoptions between 1950 to 1992 reported "Attitudes towards the women. . .resulted in feelings of shame, guilt and an unworthiness to raise their child." Kenny, P., Higgins, P.D., Carol Soloff, C., & Sweid, R. (2012). National research study on the service response to past adoption practices. Research Report No. 21 -August, Chapter 5. Retrieved from http://www.aifs.gov.au/institute/pubs/resreport21/: 35. Other examples of mothers' experiences from the Australian national research study of past adoption practices include "I was only 17 and society did not accept unwed mothers. . .I was told, being unmarried, I wasn't fit to be a mother.  medical decisions. An inconsistent approach to defining a family will produce an inconsistent conception of family interests. A first requirement from those who advocate family interests then is to be clear what they mean by "family". Accepting that this is a problem to be overcome, as the concept of family is broadly accepted, the next question is whether a family is the sort of thing that can have interests.
2.2 | Is the family the sort of thing that can have interests?
In this section, I argue that families can have interests in at least one sense. I distinguish a weak 'collective' conception of family interests from a strong 'corporate' conception of family interests. There is a second, stronger, conception of family interests that families' interests go above and beyond the interests of individual members of the family. 28 As a school or sports club may have aims that are independent of the goals of the individuals who constitute the school or club, so too, some groups may thrive in a way that is not wholly dependent on the well-being of individual members of the group. In this sense, family interests describe a communal interest not reducible to the individuals' interests. 29 In Taking Families Seriously the Nelsons state "Families aren't simply more or less efficient means to some independently specifiable good ends; they are also (at least oftentimes) valuable in themselves." 30 Ross states this position clearly ". . .families can have interests that are not reducible to the interests and needs of particular members. . .". 31 Either way, it is clear that in at least one sense the notion of family interests holds water and that the question is how should family interests be understood?

| THE WE AK CON CEP TI ON
The weak, collective, conception is that family interests are no more than the combined interests of family members. All members of a fam-  29 Jones draws a similar distinction when considering group rights ". . .corporate will be used here to describe. . .a right-holding group as a unitary entity. The term collective will be used to describe the conception of a group right as a shared or joint right, since it conceives a right-holding group as a 'collection' of individuals." Jones, op. cit. note 7, Jones' italics. ancing of interests is unlikely to be straightforward. Bainham described primary and secondary interests, reflecting the fact that some of our interests are more important than others, but there are more than two grades of interests. And even the same sorts of interests deserve different weights. For example frequent meals are more important for an infant than for an adult and so regular access to food is a more important interest for a baby. Balancing interests between family members is still more troubled because the balancing runs through time. A decision to prefer the interests of one child to another on a particular occasion need not be unfair, but it would be unjust if one child was consistently preferred to another (without good reasons). Whatever form of aggregation of interests is used, it is unlikely to be simple addition. Veatch asks "Surely, all that is expected is that a reasonable balance of the conflicting interests be pursued". 41 This is true, but the devil lies in the detail.
The third difficulty comes from the power imbalances within fami- well as this, there is a power imbalance within families: Parents make decisions concerning children, and will usually make the decisions that concern the family as a whole. This is trivially true for just-born babies who can play no part in making decisions but it is also true for families with older children. In contentious decisions, the parents will usually make the final decision. A longstanding feminist criticism of the family is of the power imbalance within the family that leads to the interests of women being subordinated. Similarly in the absence of an objective notion of interests, and in the absence of oversight of decisions, a claim for family interests can become a claim that parents should make the decision, justified by whatever conception of interests (and whatever conception of a fair distribution of interests) the parents choose to use.
The advantage that the weak conception of family interests has is that, as it is derived from the combined individuals' interests, the individual's interests remain firmly in view in the reckoning of family interests.

| THE S TR ON G C ONCE P TI ON OF F AM I L Y IN TE RE S TS
The second conception of family interests is that the family itself is the sort of group that has interests: ". . .families can have interests that are not reducible to the interests and needs of particular members. . .". 43 This echoes Schoeman's earlier writing ". . .the family is to be thought 37 The extent to which partiality can be shown to those in the family over those outside the family is disputed "Family loyalties present two sources of potential conflict. . .and extra weight given to the promotion of the family either at the expense of those outside the family or even at the expense of those within". Schoeman, op. cit. note 28, p. 54.  There are several problems that need to be overcome to develop the strong conception of family interests. I will concentrate on three.
Firstly, one question is whether the family is the sort of group to which it is appropriate to ascribe group interests. 50 A concern is that the strong conception of family interests needs to recognise the tension between individual family member's interests and the family's interests.
A second concern is that the dispute over family membership becomes a greater concern for the strong sense of family interests than the weak sense. A final concern is that the strong conception does not account for dysfunctional families.

| Group Interests
The first question is whether a family is the sort of thing that can have interests that are over and above the interests of the individual members of the family? This seems possible for some groups: A sports team has a history, a personality (the Harlem Globetrotters), and com-  I've argued that the British Royal Family may have group interests, but this may be a particular case. It may be that families in general do not have group interests, but the British Royal Family has group interests as a ruling monarchy, not as a family. 51 Jones, op. cit. note 7. 52 Tollefsen's groups are corporate groups ". . .paradigm case of a corporate group is a corporation, but governments, educational institutions will also count as corporate groups insofar as they have a structure and decisionmaking process." Tollefsen, op. cit. note 7, p. 3. For List and Pettit group agents have representational states, motivational states, and can process these so it can ". . .intervene suitably in the environment. . ." see, List & Pettit, op. cit. note 7, p. 20.
Ross rejects this particular criticism arguing that ". . .parents perceive themselves as representatives of the family's interests, and this can be separated from their role as representatives of their own interests. As such parents can serve as both moderator and disputant in intimate family decisions.". 53 Ross' claim that parents can stand above the family and take a more objective view of the decisions does not mean that parents will act in this way. In situations where a parent has to decide as both "moderator and disputant", it is difficult for the parent to be objective, to compensate,  Larkin expressed the concern that families are dysfunctional somewhat pessimistically "They fuck you up, your mum and dad./They may not mean to, but they do./They fill you with the faults they had/And add some extra, just for you." Larkin, P. (2001). This be the Verse. In A. Thwaite, (Ed.). Collected Poems. Farrar, Strauss and Giroux. 59 You Could be Normal? and the Goldfinch as examples) and many films (Mommie Dearest, the Sopranos and Shameless are amongst many others). A theory that accounts for family interests also needs to recognise and account for dysfunctional families. Families cannot be taken to be a source of unmitigated good. How does the strong conception of the family deal with these families?
The concern is that claims for a strong conception of family interests means that an individual's interests may not be apportioned proper weight. This is particularly problematic when dealing with young children, but can be true even for adults. And if the strong conception of family interests is preferred, it becomes more difficult for those outside the family to enquire into situations in which children (and adults) are mistreated or neglected. 60 I have argued that there are at least two sense of family interests, and that there are unresolved concerns with both of them. I will now argue that the weaker sense of family interests is more plausible, but even so family interests should not contribute to the analysis of contested medical decisions for children.

| SHOU L D FA M I L Y I N TER E STS CON TRI BU T E WH E N D E CI DI N G M E D IC A L IN TE RV E NT I O NS FO R CH I LD R EN ?
On some occasions, parents must make decisions that are not in a particular child's interests, but are for the good of others in the family. 61 These decisions cannot be justified by the individual's interests, and can only be justified by an appeal to the interests of others, or to family interests. The weak conception of family interests justifies actions that at first sight are against an individual person's interests, but when the benefitsto the childof being in a family are included, they are in the child's overall interests. As well as this, the weak conception of family interests allows the interests of others within the family to be considered to justify decisions that are not in a particular child's interests "To be part of a family is to be morally required to make decisions on the basis of thinking about what is best for all concerned, not simply what is best for yourself." 62 This is true, but as Munoz-Darde argues ". . .justice requires us not to be concerned with family welfare or autonomy, but with each family member's demands for respect and well-being." 63 The risk is that ". . .if we give moral standing to groups as such, we shall lose sight of individuals within the group" 64 . And this is a particular concern for children, because of their vulnerability and their difficulty in making their voices heard. 65 Adults are the voice for young children. Even older children may struggle to be heard. The concern is that claims for family interests can ". . .reinforce the power of conservative elites whose wishes and interests clash with those of others in the group. Typically an elite will want to use its power to maintain the traditions and integrity of the group and will be unwilling to tolerate dissent, deviance and demands for reform." 66  . MB's parents wanted aggressive treatment to continue but the clinical team argued for palliation. 67 The judge decided that it was in MB's objective best interests that treatment should continue.
Inwald recommends the "family-based welfare approach" which is In some abusive families, the child may be reluctant to disclose abuse for fear of consequences (including scrutiny from outside the family, the disruption of familial relationships and punishment of abusive members). And when the child is taken into care she may fear that these fears are fulfilled and she is scapegoated.