Family and Family Medicine
FAMILY AND FAMILY MEDICINE•••
Families have played a most important role in the history of medicine, tending the sick when doctors were unavailable or unavailing. Medicine and the family, the two ancient and in some respects rival systems of care for the very vulnerable, are each in part shaped by the other and rely upon the other for certain kinds of help. When illness or injury exhausts a family's capacity for care, the family looks to professional medicine for the necessary facilities and expertise; in turn, technological advances in medicine have driven the healthcare system to depend on families for what can be enormous sacrifices of time, money, caring labor, and even spare body parts on behalf of its patients. Recent developments in medicine have not only expanded the options for forming families—for example, through in vitro fertilization and contract pregnancy—but they have also had an impact on familial demographics: artificial means of birth control have helped reduce family size, while improvements in healthcare have extended longevity, though they have not eradicated the ills of old age.
Yet the most profound impact of contemporary medicine on the family may not be so much a function of new technologies as of new social practices. A characteristic of the social arrangement of healthcare in the twentieth century was the professionalization of care and the concomitant migration of care provision from home to hospital. If trends in the 1990s hold true, however, the twenty-first century may see a reversal of that process, with greater amounts of care—requiring greater skill, and more intensive investment of time, energy, and emotion—moving back into family contexts.
Bioethics has a rather checkered record of engagement with moral issues that arise where families and medicine meet. While new reproductive technologies have been the focus of bioethical attention from the start, the proper role of family interests in healthcare decision making has been addressed only by relatively few workers in the area, and bioethics has, as of yet, taken little notice of the moral questions involved in the "hospital to home" shift. The lack of attention to issues apart from those suggested by reproductive technologies is curious, both because of the practical exigencies involved (family members, for example, are and will continue to be much more influential than formal advance directives in making healthcare choices for the incompetent), and because the conceptual and moral questions involved in understanding the special character of these intimate associations are very challenging. What constitutes a family? How do various forms of family relationship translate into moral duties and prerogatives? What does "justice" mean in such contexts, and how should justice within families relate to broader concerns about justice in the allocation of healthcare resources in society?
With the turn of the twenty-first century, however, bioethicists have shown a greater willingness to take up these questions, and to consider in particular that the role of family members in the care of ill relatives may be morally more complex than simply that of serving as conduits of information about the treatment preferences of patients too ill to express them on their own. The pioneering work of scholars such as John Hardwig has helped to instigate broader bioethical reflection on how healthcare choices can affect the well being of other family members, and has pressed in particular the question whether the impact of patient care on families gives them a legitimate stake in the treatment decision-making process. While the notion that the interests of families should be considered along with patient interests in choosing among treatment options remains highly controversial among bioethicists, there is some evidence that healthcare providers are more receptive to this idea than are theorists. A 2003 study by Hardart and Truog reports that many physicians regard the interests of family members as pertinent to healthcare decision making, even in the absence of specific patient acknowledgement of those interests. A sizable minority went further, regarding family interests as of equal significance to those of patients. If these results are representative, then bioethicists will have a strong incentive to consider the role of families more carefully then they have yet done, and to address in particular the burdens on families that do not emerge primarily from clinical decision making, but rather from policies on the part of hospitals and insurers that send patients home "quicker and sicker."
There is other evidence that healthcare providers have been more sympathetic than bioethicists to the role that families play in the lives of so many patients. Family medicine or family practice is a distinct primary care specialty within medicine, but there is no comparably entrenched specialty within bioethics and little bioethical attention has been paid to family medicine's particular focus and problems. In addition to its treatment of the family from perspectives pertinent to bioethics, then, this entry also contains a brief discussion of the ethical dimensions of family medicine.
Families: Myth and History
The development of a mature "bioethics of the family" is significantly complicated by controversies concerning the nature and importance of this much-vaunted, much-maligned social institution. The dramatic shifts in the demographics of American families have rendered them suspect, as have public debates that underscore the family's role in sustaining practices hostile to women's interests and that identify families or family values as a particular focus of conservative political perspectives. Families have come to seem so fragile, their configurations so arbitrary compared with what they once were, and their value so contested, that offering them a special role in bioethical deliberation may seem a dubious enterprise.
Yet neither hostility nor sentimentality does justice to the moral character of these complex and puzzling entities. Nor is the notion that families are particularly unstable in today's world altogether accurate. American families have always been somewhat fragile and subject to rapid reconfigurations. African- and European-American families in the Chesapeake colonies of Virginia and Maryland, to take only one instance, were so vulnerable to malaria and other fatal illnesses that it was not at all unusual for an adult, whether slave or free, to bury three or even four spouses, or for half-orphaned children to be reared by relatives other than the surviving parent. In the matrilineal Iroquois societies of that same period, divorce was quite common. It is true that middle-class families gained a certain solidity when they underwent a shift around 1800 to a sentimental, child-centered model of domestic life, but this was achieved through an arguably unjust gendered division of labor, in which the middle-class father was increasingly absent from home and the mother's work was narrowed principally to unpaid domestic tasks. For many poor young nineteenth-century mothers—whether black, Latina, Irish, or east European—this arrangement was not an option, and the long hours spent working outside the home left the care of their children a somewhat haphazard business. Death in childbed and other premature deaths once threatened the family's integrity as much as the divorce rate, which has risen by a steady 3 percent in every decade since the Civil War, does now. In short, there is good reason to think that stress, turmoil, and identity crises have long been a feature of American families.
The "Culture of Divorce"
The long history of family fragility notwithstanding, however, sophisticated scholarship now identifies divorce as a source of instability particularly threatening to children's well being. Sociological and ethnographic studies appearing since the mid-1990s suggest that the fate of the "family of origin" is of systematic and enduring importance to many central features of children's lives, and that the damage ensuing from divorce has a strong tendency to reach well into adulthood, at least in contemporary American culture. Judith S. Wallerstein, Julia M. Lewis, and Sandra Blakeslee argue in The Unexpected Legacy of Divorce (2000) that divorce impairs children's ability to consolidate their identities as mature adults and to form their own enduring intimate relations, in a way that is apparently different and seemingly graver than other forms of familial disruption and reconfiguration. Some of this damage would seem to be a function of features that often attend divorce: the subsequent inability of parents to provide reliable, timely, and well-directed care, the tendency of noncustodial parents—particularly fathers—to attenuate or even abandon their connections to their children, economic losses leading to a reduced ability of custodial parents to spend time with children, and so forth. Some damage, however, apparently is attributable to divorce itself. Even when parents divorce relatively amicably, maintain continual and substantial engagement in their children's lives, do not require their children to "take care of them" emotionally in inappropriate ways, and are able to support their children's fiscal and emotional needs without interruption, children undergo losses in their expectations and abilities concerning the maintenance of their own long-term intimate relationships, and seem to suffer a measurable delay in their movement into adulthood. These decrements seem to be of a different and more severe character than the harms that affect children who have grown up in families where the parents were continually unhappy but did not divorce.
While many questions remain to be answered—for example, why these harms seem to be more pernicious in the United States than in, say, Scandinavia; and whether divorces in which care is taken to protect the children are worse on the whole than other ways in which families have come unglued throughout history—recent social scientific studies make it difficult to regard divorce as a feature of contemporary life that children can simply get over.
These results may have implications for bioethics as well as for healthcare practice and policy. Is the process of transferring ever more intensive forms of care from hospital to home made more morally suspect by the possibility that children with divorce in their pasts will be less willing to provide such attention with the consistency and quality required for good health outcomes? Is the role of family members as presumptive proxy decision makers cast under a cloud? Is the apparent willingness of many physicians and at least some bioethicists to recognize family interests as relevant to medical choices rendered more problematic by these data? And, given the emotionally complex, internally contested, and structurally protean character of people's affiliative and kinship patterns, what counts as a family anymore, anyway?
A measure both of the importance of families to our lives and of our ambivalence about them is that any discussion of the topic quickly elicits a demand for an explicit statement of what is meant by family. The most useful such account is perhaps a normative one, which identifies features of special moral significance in the clear paradigm cases. Those features can then be used to determine what counts as a family in the less clear cases. Ludwig Wittgenstein's notion of family resemblances may be pressed into service here: any social configuration that incorporates at least most of the morally significant features of, say, marital and parent-child relationships can be thought of as a family for purposes pertinent to healthcare. These features include longstanding, committed relationships; blood ties; emotional intimacy; shared histories; and shared projects that produce solidarity among family members. Other crucial features identify functions: families forge the selves of their youngest members and help maintain the selves of adults. Further, familial relationships go beyond the contractual and the voluntary; in them people incur responsibilities not of their own choosing.
Relationships within families will take on greater or lesser bioethical significance, depending on the familial question under consideration. If treatment decisions for a badly damaged neonate are at issue, family means the mother and father; if the issue at hand is pedigree testing for a genetic disorder, family means blood kinship; if the issue is determining the appropriate caregiver for a person with progressive dementia, family may mean spouse or child.
Family and the Law
Discussions in family law echo the question of how we are to define families. While there was for many years no basis in common law for family members to make treatment decisions for incompetent adults, for example, a number of court decisions in the 1980s as well as various legislative actions gave families explicit decisional authority in twenty states. By the turn of the century, thirty-five states plus the District of Columbia recognized the authority of family members to make many significant healthcare decisions, should their relatives become incompetent, without having an explicit advance directive. This legal trend makes it all the more necessary to know just who is entitled to count as family. A strictly biological definition does not capture what seems socially significant about single parenting, adoptive parenting, step-parenting, or contract pregnancy. The legal notion of marriage skips over kith—long-standing, committed relationships resembling kinship that might give, say, a neighbor or housemate moral authority to speak on behalf of a patient who is too ill to make treatment decisions. The law also fails to recognize gay and lesbian relationships, though these are often more significant than blood ties to the people within them. On the other hand, functionalist definitions of families require courts to determine whether a particular relationship closely enough approximates an accepted norm of family to count as one. This involves inquiry into such areas as sexual activity, management of finances, and degree of exclusivity and commitment—a profound intrusion into personal privacy.
When one compares the body of family law against the body of law dealing with, for example, commercial transactions, family law seems distinctly underdeveloped and lacking in detail. The reason for this, Lee Teitelbaum argues in "Intergenerational Responsibility and Family Obligation: On Sharing," is that families, incorporating "diffuse, particularistic, and collective values and relations," tend to reflect a wide-ranging set of circumstances and goals, while law is better suited to consider individuals as abstracted from these particulars in public settings that can be assimilated into a formal, rational scheme (Teitelbaum, p. 789). There is a further problem. In "Bioethics and the Family," Carl Schneider points out that in the last few decades family law has increasingly eschewed moral discourse. The temptation is understandable: the problems within families are complex and often "reduce to unresolvable disputes over unverifiable beliefs" (Schneider, p. 822). But by avoiding the language of morality, family law has stripped itself of conceptual notions that might help resolve such bioethical perplexities as contract pregnancy and the family's role in decision making for incapacitated patients.
Challenges to an Ethics of Strangers
Bioethics, however, need not lie down with the law. Because it can achieve a high degree of particularity, it is better suited than the law to use a working definition of families that identifies morally relevant features and notes family resemblances (so to speak) among various small-scale human groups that include some such features. Roughly speaking, two approaches have been used to incorporate what is morally valuable about families into bioethics.
The first approach assumes the moral framework characteristic of the Enlightenment, with its stress on the impartial and the universalizable. Within this tradition, Nancy Rhoden has criticized the suspicion of the motives and interests of family members that has opened family decisions concerning nontreatment of incapacitated relatives to court review. Arguing in "Litigating Life and Death" (1988) that because family members "are in the best position to reproduce the preferences of an incompetent patient," Rhoden concludes that the burden of proof should be on the physician rather than the family to convince a court of law that an unwise decision has been made. Using the same moral framework but setting it in service of a more radical departure from current practice, Hardwig (1990) has attacked the exclusionary bias of the doctor-patient relationship, insisting that the interests of all those with a stake in a medical decision, not just the patient's, be honored impartially.
At the same time, the so-called personal turn in ethics explored by Bernard Williams, Lawrence Blum, Jeffrey Blustein, Margaret Urban Walker, and others has challenged the orthodox assumption that ethics has primarily to do with right conduct among strangers—an ethics that favors no one and whose dictates are universalizable. The personal turn might be said to have begun with Williams's germinal observation in "Persons, Character, and Morality"(1981) that impartialist dictates, if followed scrupulously, leave insufficient room for moral agents to pursue their own individual interests, desires, and projects—all the substance, in fact, that gives life its meaning, yet such meaning is what motivates one to go on. The task of Williams and others has been to construct moral accounts that honor the particular and the personal, but do so in a nonarbitrary way. Feminist ethical theory has devoted much attention to this task (see Hanen and Nielsen; Kittay and Meyers; Mahowald; Nussbaum; Walker).
In bioethics, one can see the direct impact of the personal turn in the writings of Ferdinand Schoeman. He has argued that a Kantian ethics for strangers, which insists that medical decisions for an incompetent person can be made only in accordance with what is in that person's best interests, provides an inadequate basis for understanding the parent-child relationship. That relationship, because it is intimate, permits parents to compromise the child's interests so as to promote the family's goals and purposes. Parents could, for example, permit a child to donate bone marrow to save a sibling's life, even though donating the marrow is not in the child's medical interests. In Schoeman's view, then, the family is seen as an entity with an integrity of its own that is greater than the sum total of the interests of its members (Schoeman, 1980, 1985).
Rhoden's attempt to vindicate the decisional authority of families and Hardwig's challenge to the patient-centered focus of conventional bioethics use the relatively straightforward strategy of applying impartialist standards to a context—the doctor-patient relationship—where they have not been applied before. Both writers are concerned with decision making, and more particularly with the locus of the decision. By contrast, the personal turn in bioethics, which is concerned with a more fine-grained understanding of the structures of interpersonal relationships and their importance for human action, is less well developed. But attention to the personal suggests certain moral features of family life that might be used to construct an ethics of the family.
Some Elements of an Ethics of the Family
Social critics from Plato through Shulamith Firestone have argued that the distinctive features of the family constitute moral liabilities, and that families ought to be altered or abolished. In A Theory of Justice (1971), John Rawls notes quite explicitly that the family is always a problem for egalitarian social theory. A more sympathetic approach would portray those features as morally valuable, but whatever one's basic stance toward families, they do possess features that require moral attention and analysis.
One rather marked characteristic of families is their tendency to favor their own over outsiders. A central question is whether this sort of bias can be adequately understood inside a universalizable, impersonal framework. For example, can the favoritism parents show their children be justified insofar, and only insofar, as it increases the overall utility? James Rachels has argued for a position he calls "partial bias," which allows the expression of particular regard for children (and presumably for one's intimates in general) in those cases where their needs are in conflict with similarly serious needs of others, but not otherwise. This approach, he suggests, allows the special goods of intimacy to flourish within the context of appropriate regard for the needs of all, impartially considered. It is, however, questionable whether a truly disinterested regard for the needs of others, in a world where resources are massively maldistributed, would leave any appreciable room for special regard for the needs of one's own, particularly for people living in affluence. But even if some measure of special attention to loved ones could be made consistent with general impartialist norms, unless family members favor their own to at least a slightly greater degree than impartialist considerations mandate, it would seem they express only an ersatz partiality, not true loyalty, love, or commitment. To feel the force of this point, consider the intuitive response to a father who, when his only daughter thanks him affectionately for taking her to a baseball game, tells her, "Oh, I would have had to do the same for any child of mine."
Rather than attempt, as Rachels does, to assimilate personal loyalty into an impartialist framework, a promising strategy might be to put less emphasis on individual integrity and the separateness of individuals, and attend a little more to the connections among individuals. A careful attention to these interconnections offers a basis for just dealings with others that takes account of the difference between strangers and intimates.
A second notable feature of families is that not all of its relationships fit comfortably under what has come to be modern ethics' most favored image of relationship: the contract. Children notoriously "didn't ask to be born," and no one chooses one's blood relations. This fact has important implications for any theory that bases duties solely on consent; indeed, families are perhaps the most plausible counterexample to such theories. It is sometimes claimed that parental duties toward children arise from the parents' having tacitly consented to the child's existence, first, by agreeing to have sexual intercourse and second, by choosing not to abort the fetus. But this analysis entails that where intercourse was forced or good-faith efforts at contraception failed, and where abortion is for ethical, logistical, or economic reasons not an option, the parents are off the moral hook. Many will be reluctant to pay this dearly to retain the contract as the model of obligation. Ordinarily, responsibilities can arise from causal as well as contractual relationships. A proximate causal role in putting another in danger, for example, obligates one to stand ready to provide aid. This thought leads Hilde Lindemann Nelson and James Lindemann Nelson to suggest, in their 1995 work The Patient in the Family, that parental responsibility may stem from the fact that parents caused the child's existence and not from their having contracted for the child. In fact it can be maintained that intimate living as such creates expectations and other vulnerabilities, which, as Robert E. Goodin has argued, carry with them certain prima facie noncontractual duties (Goodin). Such an analysis would embrace family members other than parents in a web of moral but nonconsensual relationship.
A third feature of the ethics that typifies families is a less individualistic image of persons than is customary in impersonal ethics. Actions are often assessed in terms of their impact on the family overall, and there is a certain amount of collective responsibility for family members' well-being. A family of immigrants might, for example, devote its resources to settling other relatives in the new country, an enterprise that requires individual family members to subsume their own projects and goals to the familial one. While the communitarian feature of family ethics has often lent itself to abuse as repeated sacrifices are demanded of certain family members (particularly women) in service of an agenda set by its dominant members, it is also true that a family cannot function if its members are altogether unwilling to pull in common. An ethics of the family, in contrast to standard ethical theories, will concern itself with interests that are essentially held in common, as well as with individual interests.
A fourth distinguishing feature of what might emerge as an ethics of the family is that it is particularistic. Leo Tolstoy notwithstanding, happy families are not all alike. There are myriad differences among and within them—as there are, for that matter, among unhappy ones. Because familial relationships are not only intimate but also of long standing, family members can come to know each other in rich, particular detail and from a highly specific standpoint. This means that the principles governing their behavior toward one another can be fine-tuned to a pitch of precision that is impossible in other contexts such as law, where individual differences are perforce flattened out. What Iris Murdoch has called loving attention and Martha Nussbaum calls fine awareness would likely play an important role in any ethics of intimacy, whether among friends or within families. Attention to the particulars is what allows people involved in intimate relationships to focus on who they are together. This self-awareness, guided by general moral ideas such as justice, permits intimates to arrive at ethical decisions that are highly sensitive to circumstances and persons; the ethical work can be done "close up." Further, as these ethical deliberations become a part of the history of the relationship, their results can be used to guide future decisions that will be just as sensitive to the particulars.
Implications for Medicine
The primary health specialty of family medicine, or family practice, distinguishes itself by focusing on the healthcare needs of people from cradle to grave, and by explicitly acknowledging the ways in which illness or traumas that individuals confront resonate through the families of which they are a part. More than any other medical specialty, family practitioners have espoused the view that "the patient is the family," and they are typically trained to understand various family systems theories to gain a systematic perspective on how families can both suffer from, and contribute to, the ailments with which patients present. These skills and this orientation naturally lend themselves to dealing with ethical issues that involve patients and their families. While family practice physicians do not as a group dissent from the orthodox medical ethics doctrine that the interests of the patient always trump any inconsistent interests that individual relatives or the family as a whole might have, their interest in the family as an integral part of understanding both illness and caring can contribute to more nuanced and thoughtful ways of appreciating and ameliorating tensions between patient and family interests, as well as ways of supporting family contributions to the care of their relatives.
When a patient is incompetent to decide about his or her own medical treatment, or when competence is intermittent, physicians turn to the family for help, since families are presumed to know best what the patient would want and also to care about the patient's interests. Families are instructed to make their decision on the basis of what the patient would want—the "substituted judgment" standard established in the 1976 In re Quinlan case. If the patient was never competent, the family is expected to decide on the basis of what is best for her or him—the "best interests" standard. Tightly focused on the patient, either standard is open to challenge.
Linda L. Emanuel and Ezekiel J. Emanuel observe that the substituted judgment standard has been challenged on both theoretical and empirical grounds. An important theoretical objection is that reconstructing what a patient would want in highly specific circumstances from a general knowledge of the person's values requires a tremendous imaginative effort that may be beyond most people, while the empirical objections are that patients do not in fact discuss their preferences with family members, that family members are not good at assessing a patient's quality of life, and that proxies' selections are not much better than random chance in predicting patients' preferences for life-sustaining interventions. As Patricia White points out, people often do not know what they themselves would want if seriously ill.
The best interests standard is open to the objection that it cannot be seen as a patient's exercise, by proxy, of his or her right to refuse or consent to treatment, but instead gives the family power to exercise its own authority over the incompetent patient—something our society is reluctant to do because of the fear of abuse. While there are certainly instances of familial abuse of patients, one might question whether we ought to base social policy on the assumption that abuse is the possibility most to be feared. Yet if this objection to the best interests standard is unpersuasive, there is another that may be more convincing: the standard is not suitable to families because they are not, typically, a group of people each simply seeking to maximize his or her own self-interest. There is a collective character to family life that is not easily accommodated by the notion of individual best interests, and so the best interests standard is a code of conscience that from the family's point of view is distinctly second best. In fact, the standard is invoked primarily in adversarial situations where the family's solidarity has broken down, as in child custody disputes.
An ethics of the family might suggest that what family members owe each other is not the best, understood abstractly. If it were, parents would have a duty to find better parents for their children than they are themselves. Rather, what is owed is the good that inheres in this particular set of relationships. If this is right, then at the sickbed it is less important that a brother, lover, or daughter-in-law should correctly decide what is best for an incompetent patient than that the decision be made by this particular person, the one who stands as close to the patient as possible and so serves the patient as an extended self. Here, as well as where the patient is competent, decision making that recognizes morally salient features of family life might set the needs and desires of the patient into careful balance against the family's resources for care, bringing a nuanced understanding of all the relevant particulars to bear on the decision.
What, if anything, do adult children owe their frail elderly parents? Theories affirming a duty of reciprocity argue that parents gave their children life and cared for them when they needed care; in return, children owe their parents care when they are in need. The difficulty with such theories (held by Aristotle and Aquinas, and more recently by the Victorian jurist William Blackstone) is that they do not seem to recognize that parents have a duty to provide their children a decent minimum of goods and services. If parents are merely discharging their own obligations, it is hard to see why the child need respond with anything more than thanks. Following this line of reasoning, neither Jane English nor Norman Daniels can defend a duty of adult children to care for their parents. The child, not having contracted for the parental sacrifices made on his or her behalf, has no duty to reciprocate, since sacrifices that have not been requested require no return. A third view, shared by Blustein and Joel Feinberg, distinguishes between duties of indebtedness and duties of gratitude, and concludes that duties of gratitude are owed even for those actions that are included in the parents' own duties (Blustein, 1982; Feinberg). To discharge this duty of gratitude, children must help their parents when help is needed. And a fourth theory, developed by Nelson and Nelson (1992; 1995), bases a duty to parents in the parents' own moral duties, holding that the parental duty consists in part in encumbering the child with a loving relationship that in the child's maturity will be mutual. Once that mutuality is achieved, the mature relationship in turn generates the duty to care for parents in need.
Whatever the source of duties to frail elderly parents, the content of those duties is not easy to ascertain. If postindustrial societies do not set limits on the amount of increasingly costly medical care they offer the old as they leave this life, they may impoverish the young. Within a family, this dilemma might be played out in terms of nursing-home care for a grandparent versus a child's college fund. In "Moral Particularity" (1987), Walker has described such a decision as an opportunity for defining oneself morally, ratifying or breaking from a past course of action as one sets the course of one's future. Families, too, might be capable of strong moral self-definition of this kind.
Medical solutions to infertility are genetic solutions; there is an attempt to establish a genetic tie between the child and at least one parent. In a genetic contract pregnancy (in which the birth mother's egg is used to produce a child for people who have paid her to have the baby on their behalf), the importance of the maternal genes is played down, but the paternal genes—those of the contracting father—are considered crucial. In the far less common arrangement whereby the birth mother is hired to carry to term an embryo formed in vitro by the contracting couple's egg and sperm (this is called gestational contract pregnancy), the maternal genes regain their standard social meaning; the woman who is genetically linked to the child is regarded as its mother. By contrast, in artificial insemination by donor, the paternal genes are seen to carry no social responsibility for the child.
The model for all this is one of consumer choice, in which the infertile parties are at liberty to decide for themselves what weight to give genetic ties.
This model raises important questions about the moral significance of being a parent. If those who contribute genetically to a child can be said to cause that particular child to exist, and if an ethics of the family adopts a causal rather than a contractual model of responsibility, then the child's genetic parents would seem to have a prima facie obligation to remain in the child's life in an ongoing way. Even if they delegate much of their responsibility for rearing the child, it does not follow that they may put themselves totally out of power to keep the child from harm. Thus lesbian or gay couples, for example, might have a duty to foster a loving bond between the child and the biological parent of the opposite gender.
Medicine invites a consumer-choice approach not only in the matter of genetic ties but also in the matter of genetic screening. While it is reasonable to protect one's family by trying to avoid giving birth to a child with a serious genetic defect, the choices made possible by genetic screening can be a burden as well as a benefit. An important mechanism for drawing new members into the family—the pregnant woman's continual process of making friends with her fetus—is distorted and interrupted by amniocentesis, endoscopy, chorionic villus sampling, ultrasound, alpha-fetoprotein assays. Such screening, along with the new possibility of fetal surgery, prompts the question, not when the fetus becomes a person, but how and when the fetus joins the family. As Stanley Hauerwas and William Ruddick ask, when is a fetus a child? (Hauerwas; W. Ruddick, 1989). At what point in the process of family creation ought the pregnant woman to make specific sacrifices on the fetus's behalf, and to what extent should these sacrifices be socially imposed?
A major function of the family is the care of its sick and vulnerable members. Because the United States has not acknowledged a basic responsibility to provide a minimum of healthcare for all its citizens, and because healthcare institutions are greatly concerned to minimize their own costs, the burden of providing that care has fallen disproportionately on families—and within families, on women. The difficulty in achieving gender justice with respect to healthcare is not conceptual but political: how can we reconfigure our society—and our families—to eliminate the bias that sees unpaid care as a natural task for women?
A further allocation issue concerns the range of the family's care. To whom is it owed, and when is it discretionary? What about adult siblings? Cousins? Grandparents? A child's partner? Need and the person's role in the family's history are both relevant considerations, as are the family's resources. If, after all, familial caregiving is exhausted, no further care will be forthcoming. What limits may the family set on the care it owes to its own? What limits may the family set on individual members' sacrifices? More particularly, in light of the fact that women assume a greatly disproportionate amount of the burden of care, what steps should be taken both within families and in the larger society to achieve gender justice? An ethics of the family might offer guidance through the concept of familial integrity, understood as the particular way in which a given family strives to sustain a fruitful tension between intimacy and autonomy, and the way it engages in its characteristic projects and activities. Family integrity cannot, perhaps, be preserved at any price, but it is important to recognize that families as well as individuals can be destroyed unless justice forbids it.
Implementing an Ethics of the Family
Just as medical care is ethically inadequate when the focus is on the organ to be treated rather than on the person in whom the organ resides, so it is likely to be inadequate when no notice is taken of the families in which patients reside. An ethics that treats people as if they were unconnected and self-centered is not up to the task of promoting either justice or human flourishing. Primary care physicians—not only practitioners of family medicine but also pediatricians and internists—are often adept at seeing beyond the patient to the nest of relationships within which that patient lives. They, like nurses and social workers, although hampered by institutional pressures that push families into the background, tend to be attuned to these relationships even when they cannot give a formal moral account of them. That account has been slow in coming; the values of families remain much more diffuse and implicit than the well-articulated values of medicine. But the relationship between the two systems of care is beginning to receive systematic exploration.
As discussions continue regarding what that relationship should be in the twenty-first century, it may be concluded that taking families seriously requires major institutional changes. Hospitals might need to be restructured so that patients are not so estranged from their families; hospital ethics committees might have to take on a mediator's role for disputes among family members concerning patient care; the moral significance of families might have to be better reflected in case law; the conditions under which care is delivered will certainly have to be more hospitable to an ongoing relationship between patients and those who care for them; there will have to be a greater acknowledgment that families—the original providers of primary care—are as essential a source of healthcare as medicine is. The practical difficulties in implementing an ethics of the family as it relates to healthcare, while daunting, are surely counterbalanced by the importance of the enterprise to the larger task of bioethics: thinking well and carefully about the concrete human realities—our differences, our similarities, our particularities, our intimacies—that have a direct bearing on health, whether within a medical or a familial setting.
hilde lindemann nelson
james lindemann nelson (1995)
revised by authors
SEE ALSO: Abortion; Abuse, Interpersonal; Adoption; Aging and the Aged; Care; Children; Cloning: Reproductive; Confidentiality; Dementia; Environmental Ethics: Ecofeminism; Fertility Control; Future Generations, Reproductive Technologies and Obligations to; Genetic Counseling, Ethical Issues in; Genetic Counseling, Practice of; Grief and Bereavement; Infants; Long-Term Care; Maternal-Fetal Relationship; Natural Law; Organ and Tissue Procurement: Ethical and Legal Issues Regarding Living Donors; Population Ethics; Psychiatry, Abuses of; Reproductive Technologies; Sexual Ethics
Aneshensel, Carol; Zarit, Stephen; and Whitlach, Carol. 1995. Profiles in Caregiving: The Unexpected Career. San Diego, CA: Academic Press.
Areen, Judith. 1987. "The Legal Status of Consent Obtained from Families of Adult Patients to Withhold or Withdraw Treatment." Journal of the American Medical Association 258(2): 229–235.
Areen, Judith. 1991. "Advance Directives under State Law and Judicial Decisions." Law, Medicine and Health Care 19(1–2): 91–100.
Arras, John, ed. 1995. Bringing the Hospital Home: Ethical and Social Implications of High-Tech Home Care. Baltimore: Johns Hopkins University Press.
Blackstone, William. 1856. Commentaries on the Laws of England, Volume 1. Philadelphia: J. B. Lippincott.
Blum, Lawrence A. 1980. Friendship, Altruism, and Morality. New York: Routledge and Kegan Paul.
Blustein, Jeffrey. 1982. Parents and Children: The Ethics of the Family. New York: Oxford University Press.
Blustein, Jeffrey. 1993. "The Family in Medical Decisionmaking." Hastings Center Report 23(3): 6–13.
Brody, Elaine M. 1990. Women in the Middle: Their Parent-Care Years. New York: Springer.
Buchanan, Allen E., and Brock, Dan W. 1989. Deciding for Others: The Ethics of Surrogate Decisionmaking. Cambridge, Eng.: Cambridge University Press.
Card, Claudia, ed. 1991. Feminist Ethics. Lawrence: University Press of Kansas.
Charles, Casey. 2003. The Sharon Kowalski Case: Lesbian and Gay Rights on Trial. Lawrence: University Press of Kansas.
Daniels, Norman. 1988. Am I My Parents' Keeper? An Essay on Justice Between the Young and the Old. New York: Oxford University Press.
Emanuel, Ezekiel J., and Emanuel, Linda L. 1992. "Proxy Decision Making for Incompetent Patients: An Ethical and Empirical Analysis." Journal of the American Medical Association 267(15): 2067–2071.
English, Jane. 1979. "What Do Grown Children Owe Their Parents?" In Having Children: Philosophical and Legal Reflections on Parenthood, edited by Onora O'Neill and William Ruddick. New York: Oxford University Press.
Feinberg, Joel. 1966. "Duties, Rights, and Claims." American Philosophical Quarterly 3(2): 139–144.
Goodin, Robert E. 1985. Protecting the Vulnerable: A Reanalysis of Our Social Responsibilities. Chicago: University of Chicago Press.
Hanen, Marsha, and Nielsen, Kai, eds. 1987. Science, Morality and Feminist Theory. Calgary: University of Calgary Press.
Hardart, George, and Truog, Robert. 2003. "Attitudes and Preferences of Intensivists Regarding the Role of Family Interests in Medical Decision-Making for Incompetent Patients." Critical Care Medicine 31(7): 1895–1900.
Hardwig, John. 1990. "What About the Family?" Hastings Center Report 20(2): 5–10.
Hardwig, John. 2000. Is There a Duty to Die? and Other Essays in Bioethics. New York: Routledge.
Hastings Center. 1987. Guidelines on the Termination of Life-Sustaining Treatment and the Care of the Dying. Briarcliff Manor, NY: Author.
Hauerwas, Stanley. 1981. "Abortion: Why the Arguments Fail." In A Community of Character: Toward a Constructive Christian Social Ethic. Notre Dame, IN: University of Notre Dame Press.
Kittay, Eva Feder. 1999. Love's Labor: Essays on Women, Equality, and Dependency. New York: Routledge.
Kittay, Eva Feder, and Meyers, Diana T., eds. 1987. Women and Moral Theory. Totowa, NJ: Rowman and Littlefield.
Levine, Carol. 1999a. "The Loneliness of the Long-Term Caregiver." New England Journal of Medicine 340(20): 1587–1590.
Levine, Carol. 1999b. "Home Sweet Hospital: The Nature and Limits of Private Responsibilities for Home Health Care." Journal of Aging and Health Care 11(3): 341–359.
Levine, Carol, ed. 2000. Always on Call: When Illness Turns Families into Caregivers. New York: United Hospital Fund.
"Looking for a Family Resemblance: The Limits of the Functional Approach to the Legal Definition of Family." 1991. Harvard Law Review 104(7): 1640–1659.
Mahowald, Mary B. 1993. Women and Children in Health Care: An Unequal Majority. New York: Oxford University Press.
Mintz, Steven, and Kellogg, Susan. 1988. Domestic Revolutions: A Social History of American Family Life. New York: Free Press.
Murdoch, Iris. 1970. The Sovereignty of Good. London: Routledge and Kegan Paul.
Nelson, Hilde Lindemann, and Nelson, James Lindemann. 1989. "Cutting Motherhood in Two: Some Suspicions Concerning Surrogacy." Hypatia 4(3): 85–94.
Nelson, Hilde Lindemann, and Nelson, James Lindemann. 1992. "Frail Parents, Robust Duties." Utah Law Review 1992(3): 747–763.
Nelson, Hilde Lindemann, and Nelson, James Lindemann. 1995. The Patient in the Family. New York. Routledge.
Nelson, James Lindemann. 1990. "Partialism and Parenthood." Journal of Social Philosophy 21(1): 107–118.
Nelson, James Lindemann. 1992. "Taking Families Seriously." Hastings Center Report 22(4): 6–12.
Nelson, James Lindemann. 2003. "Just Expectations: Family Caregivers, Practical Identities, and Social Justice in the Provision of Health Care." In Hippocrates' Maze: Ethical Explorations of the Medical Labyrinth. Lanham, MD: Rowman and Littlefield.
Nussbaum, Martha C. 1990. Love's Knowledge: Essays on Philosophy and Literature. New York: Oxford University Press.
Okin, Susan Moller. 1989. Justice, Gender, and the Family. New York: Basic Books.
O' Neill, Onora, and Ruddick, William, eds. 1979. Having Children: Philosophical and Legal Reflections on Parenthood. New York: Oxford University Press.
Quinlan, In re. 70 N.J. 10–55, 355 A.2d 647–672, certiorari denied, 429 U.S. 922 (1976).
Rachels, James. 1989. "Morality, Parents and Children." In Person to Person, edited by George Graham and Hugh LaFollette. Philadelphia: Temple University Press.
Rawls, John. 1971. A Theory of Justice. Cambridge, MA: Harvard University Press.
Rhoden, Nancy K. 1988. "Litigating Life and Death." Harvard Law Review 102(2): 375–446.
Rothman, Barbara Katz. 1986. The Tentative Pregnancy: Prenatal Diagnosis and the Future of Motherhood. New York: Viking.
Ruddick, Sara. 1989. Maternal Thinking: Toward a Politics of Peace. Boston: Beacon Press.
Ruddick, William. 1988. "Are Fetuses Becoming Children?" In Biomedical Ethics and Fetal Therapy, ed. Carl Nimrod and Glenn Griener. Waterloo, ON: Wilfrid Laurier University Press.
Ruddick, William. 1989. "When Does Childhood Begin?" In Children, Parents, and Politics, ed. Geoffrey Scarre. Cambridge, Eng.: Cambridge University Press.
Sabatino, Charles. 2000. "What the States Are Doing." (Lecture, Conference on End of Life Decision-Making: What Have We Learned Since Cruzan? 2000 Annual Meeting). Boston, MA: American Society of Law, Medicine and Ethics.
Schneider, Carl E. 1992. "Bioethics and the Family: The Cautionary View from Family Law." Utah Law Review 1992(3): 819–847.
Schoeman, Ferdinand. 1980. "Rights of Children, Rights of Parents, and the Moral Basis of the Family." Ethics 91(1): 6–19.
Schoeman, Ferdinand. 1985. "Parental Discretion and Children's Rights: Background and Implications for Medical Decision-Making." Journal of Medicine and Philosophy 10(1): 45–61.
Teitelbaum, Lee. 1992. "Intergenerational Responsibility and Family Obligation: On Sharing." Utah Law Review 1992(3): 765–802.
U.S. President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. 1983. Deciding to Forego Life-Sustaining Treatment: A Report on the Ethical, Medical, and Legal Issues in Treatment Decisions. Washington, D.C.: U.S. Government Printing Office.
Walker, Margaret Urban. 1987. "Moral Particularity." Metaphilosophy 18(3–4): 171–185. Reprinted in Moral Contexts. 2002. Lanham, MD: Rowman and Littlefield.
Wallerstein, Judith S.; Lewis, Julia M.; and Blakeslee, Sandra. 2000. The Unexpected Legacy of Divorce. New York: Hyperion.
White, Patricia. 1992. "Appointing a Proxy Under the Best of Circumstances." Utah Law Review 1992(3): 849–860.
Williams, Bernard A. O. 1981. "Persons, Character, and Morality." In Moral Luck: Philosophical Papers, 1973–1980. Cambridge: Cambridge University Press.