Translating Psychosocial Insight

into Ethical Discussions

Supportive of Families

in End-of-Life Decision-Making

Larry W. Foster, PhD

Linda J. McLellan, MSW

ABSTRACT. A large number of Americans would rather rely on family

and friends more than their physicians about end-of-life care and deci-

sions. Moving beyond traditional clinical ethics and its dyadic focus on

the physician-patient relationship, this article presents an approach to ethi-

cal decision-making at the end of life that is more inclusive of the patient’s

family and has the potential to advance social work practice in end-of-life

care. Initial attention is given to how psychosocial and bioethical perspec-

tives and practices interact to shape understanding of moral issues in

end-of-life decisions. Morally relevant principles are then adapted from

contextual therapy as being useful for including more of a family focus

and viewing ethical decision-making at the end of life as a family process.

Specifically, focus is on exploring the ethical dynamics of family systems

Larry W. Foster is Associate Professor, Department of Social Work, ClevelandState University. Linda J. McLellan is Bone Marrow Transplant Social Worker, Cleve-land Clinic Foundation, 9500 Euclid Avenue, Cleveland, OH 44195.

Address correspondence to: Dr. Larry W. Foster, Department of Social Work,Cleveland State University, Euclid Avenue at East 24th Street, Cleveland, OH, 44115(E-mail: l.w.foster@csuohio.edu).

The authors wish to thank Patricia Sinclair, LISW, Community Coordinator, Com-munity-Based Field Project, Cleveland State University, for helpful comments andsuggestions.

An earlier version of this paper was presented as a workshop at NASW Social Work2000: Strategies to Succeed in the New market Economy, Baltimore Convention Cen-ter, Baltimore, MD, November, 2000.

Social Work in Health Care, Vol. 35(3) 2002http://www.haworthpressinc.com/store/product.asp?sku=J010

2002 by The Haworth Press, Inc. All rights reserved. 37

that impact the decision-making process and translating psychosocial in-

sight into ethical discussions that are supportive of families. The case of

a patient with sudden and unexpected brain death and without advance

directives demonstrates one family’s unresolved grief and illustrates

how its members were helped to reason morally about end-of-life

choices. Contributions of a social worker and bioethicist are illustrated.[Article copies available for a fee from The Haworth Document Delivery Ser-vice: 1-800-HAWORTH. E-mail address: <getinfo@haworthpressinc.com>Website: <http://www.HaworthPress.com> © 2002 by The Haworth Press, Inc. Allrights reserved.]

KEYWORDS. Ethical discussions, end-of-life decisions, contextual

therapy, family

Advances in biomedical technology, an aging population, and a dualemphasis on fiscal and ethical accountability in the current managedhealthcare environment have led to unforeseen consequences and moral di-lemmas in end-of-life care. The need and opportunity for interdisciplinarycollaboration (Abramson & Mizrahi, 1996; Netting & Williams, 1996),collective moral decision-making (Karlawish, 1996), and a blending ofmoral perspectives (Pike, 1991), especially with respect to end-of-life deci-sions (Davidson & Foster, 1995), has never been greater. Such decisionsnot only involve cost containment and access issues but are embedded infamily dynamics and culturally related values associated with death anddying (Koenig, 1997), requiring a broader ethical perspective with a familyfocus in end-of-life decision-making. While all members of the health careteam, patients and family members included, have a claim for a role in suchdecision-making, traditional clinical ethics and its dyadic focus on the phy-sician-patient relationship is a bit narrow and insufficient (Doherty &Heinrich, 1996). Although there is more of an interdisciplinary approachwith bioethics consultants and ethics committees playing a relevant role, atendency still exists toward a paternalistic approach in ethical deci-sion-making with an emphasis on the biological rather than psychosocialaspects of ethical issues and dilemmas. An ethical perspective with more ofa psychosocial and family focus in end-of-life decision-making is compel-ling as most seriously ill patients do not have advance directives (Good-man, Tarnoff, & Slotman, 1998; Johnson, Baranowski-Birkmeir &O’Donnell, 1995; Teno et al. 1994; Terry & Zweig, 1994), have not dis-cussed and/or have resisted discussing end-of-life care with their physician(Blackhall, Cobb, & Moskowitz, 1989; Hass et al. 1993; Hoffman et al.1997), and want to include their families more than their physicians in ad-

38 SOCIAL WORK IN HEALTH CARE

vance care planning (Hines et al. 1999; Singer, Martin, & Kelner, 1999;Singer, Martin, Lavery et al. 1998). According to a 1999 National HospiceFoundation Survey, “one out of two Americans overwhelmingly state thatthey will rely on family and friends to make decisions about care at the endof life” (p. 1). There is a call in the literature (Christ & Sormanti, 1999;Martin, Theil, & Singer, 1999; Romer, 1999; “The Quest to Die with Dig-nity,” 1997) and from funding sources (such as the Open Society Institute’sProject on Death in America and the Robert Wood Johnson Foundation’sLast Acts Initiative) for innovations in education, research, and practice inend-of-life care that are more collaborative and move toward a family-cen-tered ethic of care.

The purpose of this conceptual article is to present and illustrate anapproach to ethical decision-making at the end of life that includes moreof the patient’s family, its voice and interest, and has the potential to ad-vance social work practice in end-of-life care; emphasis is more on away of thinking and theoretical ideas that inform practice than on tech-nique. Initial attention is given to how psychosocial and bioethical per-spectives and practices interact to shape moral issues in end-of-lifedecisions. Given this backdrop, morally relevant principles are thenadapted from contextual therapy (Boszormenyi-Nagy & Krasner, 1986)as being useful for including more of a family focus and viewing ethicaldecision-making regarding end-of-life choices as a family process. Spe-cifically, focus is on exploring the ethical dynamics of family systemsthat tend to either impede or facilitate the decision-making process andtranslating psychosocial insight into ethical discussions that are sup-portive of families, their stories and decisions. The case of a 41-year-oldmale who did not have advance directives and was diagnosed braindead due to cerebral anoxia post-respiratory arrest demonstrates onefamily’s unresolved grief and how its members were helped to reasonmorally about withdrawing life support. Roles and contributions of asocial worker and bioethicist are illustrated.

BACKGROUND AND THEORETICAL CONSIDERATIONS

Interaction of Psychosocial and Bioethical Perspectivesand Practices

Social work’s psychosocial perspective, when applied to a case in-volving ethical issues and dilemmas in end-of-life care, contextualizesthe patient and the decision-making and expands perception of illness to

Larry W. Foster and Linda J. McLellan 39

include socioemotional suffering. Included are facts about the patient’senvironment, especially the family and its culturally related values, be-liefs, and rituals associated with death and dying; in the field of ethics,such an empirical investigation of moral facts is the enterprise of de-scriptive ethics (Johnson, 1998). In contrast, the bioethical perspectivein clinical ethics is prescriptive and provides opinions on the morality ofclinical actions and outcomes using the language of normative ethics;this involves ought thinking or the specification of ethical norms, prin-ciples, and moral rules (e.g., veracity, confidentiality, autonomy, benef-icence, nonmaleficence, and justice) applicable to a moral dilemma(Beauchamp & Childress, 1994). Based on descriptive (is) and norma-tive (ought) perspectives, psychosocial and moral insight combine toelucidate the morality of clinical actions and outcomes. That is, socialwork’s empirical description, or statements of case facts and circum-stances, joins with bioethics normative reflection, or evaluative assess-ments of obligations and duties, in order to facilitate conclusions aboutwhat action(s) should be taken in response to ethical issues and moraldilemmas in end-of-life care.

The practice of clinical bioethics is a consultative service that fo-cuses on value-laden problems and biomedical-ethical conflicts in theprimary physician-patient relationship. Clinical bioethicists providemoral justification for clinical actions and outcomes in, for example,end-of-life decision-making. In contrast, social work practice occurs asa part of direct patient care and clinical social workers focus on internaland interpersonal dynamics related to the experience of moral pain insuch decisions; their interventions include clarifying advance direc-tives, advocating for a patient’s right to choose, supportive counseling,acting as liaison to the team, and encouraging family involvement andthe exploration of end-of-life options and resources (NASW Press,1994). Although providing moral justification for and the promotion ofend-of-life choices are not part of social work’s role, social workersmust claim more of a role in the moral domain of end-of-life decisionsand can do so by explicitly exploring the ethical dynamics in family sys-tems that impact the decision-making process. Otherwise, interventionstend to focus on exploring the clinical rather than the moral aspects ofemotional pain families experience. Any inclination to defer focus onthe latter to bioethics (or even pastoral care) is not warranted in view ofa timely reminder from a clinician and a philosopher, Dean and Rhodes(1992), that social work “clinicians must at least consider the possibilitythat clients want an ethical, as well as clinical, exploration of their is-sues, . . . [including] fundamental questions about responsibility, guilt,

40 SOCIAL WORK IN HEALTH CARE

and commitment” (p. 132). Given such an exploration, neither can so-cial workers rely on the bioethicist’s language of normative ethics com-prised of disembodied moral theory, principles, rules, and rationalarguments. As also stressed by Dean and Rhodes, “it is important to findbetter ways, using better language, of discussing the ethical dimensionof clinical interactions” (p. 132). Presented below is a theory base,drawn primarily from contextual therapy (Boszormeny-Nagy &Krasner, 1986), that focuses on the ethical dimension of family systeminteractions and provides language for translating psychosocial insightinto ethical terms and discussions descriptive of the ways families live,experience, and actually reason morally about end-of-life choices.

Theory Base for Exploring the Ethical Dimensionof Family Systems

Typically, social workers are taught how to conduct psychosocial as-sessments utilizing a systemic epistemology, including systems or eco-logical and life-span development perspectives (Robbins, Chatterjee, &Canada, 1998). These perspectives, along with role and sociobehavioraltheories, are utilized to examine case facts and circumstances and iden-tify behavioral correlates of a moral dilemma, revealing the “dynamicsof social systems in which ethical dilemmas arise” (Kahn,1990, p. 325).Such an assessment of the family system, according to contextual theo-rists Boszormenyi-Nagy & Krasner (1986), includes the first three offour basic dimensions of relational reality: (1) objectfiable facts, (2) in-dividual psychology, (3) systems of transactional patterns, and (4) dueconsideration or merited trust. The fourth dimension is posited to be theethical dimension and the cornerstone of contextual therapy. The theo-rists further assert that in contrast to systems thinking, when “any be-havioral and structural description of relationship is not viewed asinherently good or bad for the family” (p. 10), context implies a realm ofrelationships marked by a “. . . dynamic and ethical interconnected-ness–past, present, and future–that exists among people whose very be-ing has significance for each other” (p. 8). This speaks to the concept offamily legacy, which, according to Boszormeny-Nagy and Krasner, in-cludes “ . . . the present generation’s ethical imperative to sort out whatin life is beneficial for posterity’s quality of survival” (p. 418). As such,family context is viewed as the locus of moral obligations, virtues andvalues. Thus, when applied to end-of-life cases, thinking contextuallyviews ethical decision-making as inclusive of family process, placingthe decision-making within a relational matrix characterized by not

Larry W. Foster and Linda J. McLellan 41

only a clinical but also an ethical dimension; focusing on the latter is tofocus on the moral realm of give and take between family members, re-vealing fundamental questions about guilt, responsibility, and commit-ment in end-of-life care and decisions.

Therefore, utilizing an economic metaphor, central to such a contex-tual family focus is a moral accounting, which, as described by Johnson(1998), is concerned primarily with what family members owe to eachother to maintain or increase their well being. According to Johnson,such an accounting “gives rise to a pattern of reasoning about our du-ties, rights, and obligations [and,] on the basis of this metaphor, we rea-son about what is fair” (p. 55). Fairness, or the equity of give and take infamily member transactions, is evident in patterns of behavior, rolesand relationships. Assuming responsibility for the consequences of re-lating, Johnson posits that family members either incur moral debt orbuild up moral credit which, as adapted here, correlates with memberattitudes about who merits what voice, role and responsibility inend-of-life decision-making. Ultimately revealed is the family justicesystem and its ethical dynamics marked by such issues as fairness, reli-ability, accountability, loyalty, entitlement, and merited trust or dueconsideration, which, according to Boszormeny-Nagy and Krasner(1986), are morally relevant contextual principles. Such principles en-able the social worker to not only comprehend the potency of ethical dy-namics in the family system regarding end-of-life decisions but totranslate psychosocial insight into ethical discussions that are morefamily-centered and facilitate the decision-making process.

Translating Psychosocial Insight into Ethical Discussions

Translating psychosocial insight into ethical discussions that aremore family-centered involves reconceptualizing family system dy-namics from clinical into (corollary not equivalent) ethical terms. Uti-lized are the aforementioned morally relevant contextual principles aslanguage that is understood and shared by families because it is descrip-tive of how they live, experience, and reason morally. In end-of-life de-cision-making, for example, boundaries dividing the family systemssuch as power coalitions that triangulate and scapegoat family or (even)healthcare team members may be associated with a perceived imbal-ance or lack of fairness in the burdens and benefits among caregivers.Suffice it to say, the adult child perceived by her or his siblings to nothave helped or been attentive to their critically ill parent may be blamedand scapegoated for the parent’s rapid deterioration. Alternatively, such

42 SOCIAL WORK IN HEALTH CARE

boundary conditions may be associated with an attitude of destructiveentitlement which, according to Boszormenyi-Nagy and Krasner(1986), does not coincide with the ethical nature of being entitled; thatis, a family member may not have earned the trust and loyalty of othersin the family yet feels entitled or due consideration from others. Illustra-tive is Ms. Z, an estranged spouse who takes leadership in representingher critically ill spouse’s wishes and interests with the medical team. Asa spouse, Ms. Z may feel entitled to be the spokesperson but, because ofunkept duties and obligations, is not accepted in this role by other fam-ily members.

Another example of reconceptualizing family system dynamics intoethical terms includes viewing family denial of medical facts and/ornoncompliance with medical recommendations as being associatedwith an unreadiness to respond due to moral uncertainty; such uncer-tainty often surrounds patient decisional capacity, medical futility, anddefinitions of life and death or when personhood ends, and is com-pounded by the painful emotional nature of end-of-life choices and un-resolved grief within the family system. Medical staff may becomefrustrated when family members do not agree to withhold or withdrawlife support after physicians have repeatedly explained that medicaltreatment is futile and all hope of recovery is gone; not acknowledgingtheir moral uncertainty, the staff may label the family members as beingin denial or as resistant. Illustrative is a case in which Mr. A was thepartner and medical power of attorney of a man for whom physicianshad repeatedly recommended deceleration of treatment and the even-tual withdrawal of ventilator support. Being labeled as resistant and indenial, unacknowledged was Mr. A’s moral uncertainty related to hisfear that by agreeing to withdraw the ventilator he would be “killing”his partner and further discrediting himself in the eyes of his partner’smother.

Role of Story and Narrative in Ethical Discussions: Reconceptualizingthe dynamics of family systems into ethical terms that are family-fo-cused, or descriptive of how its members live and experience end-of-lifesituations, softens any diagnostic stance and enables the patient careteam to join the family in a less judgmental manner. Moreover, using afamiliar language, such a practice stance both facilitates and solicits thefamily story and enables its members to clarify and express intense, of-ten conflicting, feelings of moral accountability in difficult end-of-lifedecisions. Created is an opportunity for family members to reconnect,balance their emotional ledgers, make sense out of their experiences,and to say what they have to say in order to let go of the loved one. This

Larry W. Foster and Linda J. McLellan 43

speaks to the importance of family stories and the subjective and narra-tive voice (instead of the concerns of psychopathology, White &Epston, 1990), in the decision-making process. Attention to this voiceenables team members to detect different story lines, organize their ob-servations and interactions, and engage in ethical discussions that ex-plore family member issues and concerns in a collaborative andnon-intrusive manner. Such discussions also help family members stayfocused, put their own words to the moral dilemma(s), and justify theiremotional struggles at a cognitive and collective level. Because of suchdialogues, not only are clinical decisions, actions, and anticipated out-comes reconciled with the family’s moral climate but, as noted bySeaburn, Lorenz, Campbell, & Winfield (1996), created are . . . “storiesthat form the fabric of meaning . . . that influence the [end-of-life]choices we make” (p. 207). The following case presentation and discus-sion illustrates the utility of contextual thinking, story, and narrative inethical discussions with families facing end-of-life decisions. Comple-mentary roles and contributions of a social worker and bioethicist arealso illustrated.

CASE PRESENTATION

Mr. E, a 41-year-old father of two minor children, was admitted to atertiary care hospital where for the past thirty years he had receivedtreatment for juvenile rheumatoid arthritis. On admission he was febrilewith a temperature of 104 degrees. A tentative diagnosis of pneumoniawas made. The next morning Mr. E was found in acute respiratory dis-tress. Attempts to intubate orally were unsuccessful, and an emergencytracheotomy was successfully performed. However, he had experi-enced cerebral anoxia for 8-10 minutes. Although within a week he sta-bilized, was able to breathe without ventilator support, and hispneumonia was effectively treated, he showed no signs of cortical func-tions. Cortical brain death was suspected and a tentative diagnosis ofpersistent vegetative state was made; further consultation confirmed thediagnosis. Questions about Mr. E’s ongoing need for acute level of carebegan to be raised, and the social worker, who had been providing hisfamily emotional support, was requested to initiate discharge plans.Lacking clarity around quality and end-of-life decisions, planning fordischarge was put on hold, and a bioethics consult was requested by theprimary physician. Because Mr. E was lacking advance directives, fam-ily members were faced with the decision of continuation or withdrawal

44 SOCIAL WORK IN HEALTH CARE

of the gastrostomy tube that provided him with nutrition and hydration.Shocked by these events and uncertain of their rights and moral obliga-tions, they requested to meet with the patient care team.

Family Meetings

During the ensuing weeks, four meetings were held with the patient’sfamily. The first three included members of the medical team, the pa-tient’s spouse, sister, and friend of the family; the patient’s sister-in-lawserved as family spokesperson. The first meeting focused on the pa-tient’s medical condition, including attempts to answer questions aboutwhat had happened and why. Family members’ expression of shockcontributed to ethical moments marked by uncertainty, anxiety, andtension (Kanoti, 1986). Expanding these moments, the social workeracknowledged the disbelief and confusion and validated the sense ofunfairness, helplessness, and loss. Focus of the second meeting was onwhat could be done medically, including treatment options and the risksand benefits of each. The question was posed whether continuation oftreatment would be medically futile. Addressing this and other ques-tions required sharing clinical knowledge of relevant medical dataabout juvenile rheumatoid arthritis, a persistent vegetative state, and theeffects of withdrawing life support. Increased awareness of these clini-cal facts and the pending loss also required validation of the raw pain,anxiety, and prolonged stress in the family. The third meeting shifted infocus from what could be done clinically to uncertainty about whatshould be done ethically, as illustrated by the patient’s sister who asked,with tears in her eyes, “Are we doing the right thing?” Responding tothe question, the emotions, and the moral uncertainty required bothpsychosocial and moral insight. The social worker acknowledged thefamily’s grief and emotional pain, including feelings of despair andhelplessness surrounding the untimely death, and the moral sense thatthe patient had suffered enough. Also acknowledged was the family’srespect for sanctity of life and the burdensome reality of minimal qual-ity of life. Biomedical-ethical questions included whether the DNR or-der and the removal of nutrition and hydration lines were justified.Using the language of normative ethics, the clinical bioethicist assessedthe removal of life support to be the “right thing” to do, that is morallyacceptable, and supported by the value of patient autonomy, as ex-pressed through the family’s interpretation of Mr. E’s wishes and theirfelt obligation to honor the removal of treatment that did not hold prom-ise for a quality of life consistent with his values.

Larry W. Foster and Linda J. McLellan 45

Notwithstanding the bioethicist’s moral justification for withdrawalof life support, the respiratory arrest and resulting persistent vegetativestate were sudden and unexpected traumatic events. Such an acute andirreversible series of events left no time for anticipatory grief, nor tomove psychologically from a chronic to a terminal phase of illness.Laden with unresolved grief, the family struggled with the reality of re-moving life support and appeared unable to make a final decision untilthe last meeting arranged weeks later by the social worker. Unlike theprior three meetings, this meeting included the patient’s mother who,upon her arrival, assumed the role of family spokesperson and told herstory. The story was a passionate account of how she had carried her sonin her arms to and from school and the doctor’s office during his forma-tive years and, now, how difficult it was to let him go, literally, by pull-ing his life support. It was a moving and an intimate narrative of notonly a mother-son relationship but also of the impact of her son’s illnesson family member’s lives; its themes were suffering, courage, fairness,and quality of life. Also revealed were the family’s patterns of give andtake and associated feelings of guilt, responsibility, and obligationsaround issues of caregiving. The mother recalled, although her son hadsuffered greatly, he never complained and never wanted to be a burdento anyone. Commenting on his present condition, she said . . . “this isnot the son I know . . . he has suffered enough.” By meeting’s end, fam-ily members appeared resigned, to have reached closure, and supportedthe withdrawal of life support.

DISCUSSION

As in the case of Mr. E, a patient may be ready for discharge from amedical point of view but a lack of family readiness for either dischargeor a life terminating decision may be metaphoric for not only unre-solved grief but moral concerns as well. Moreover, inability of familymembers to resolve moral uncertainty about withdrawal of life supportuntil Mr. E’s mother told her story points to not only the centrality of herrole in the family but narrative in capturing the meanings of their lives.Revealed were issues of trust, loyalty, commitment, and responsibilityand the impact of these on end-of-life decision-making. The storycontextualized Mr. E as a person who had suffered and struggled yetearned the respect and loyalty of family. Voice was given to not only hisvalues, hopes, and wishes but also to family member concerns aboutpainful end-of-life choices they faced. Revealed were emotional and

46 SOCIAL WORK IN HEALTH CARE

metaphoric meanings of their decision; the mother’s comment, “this isnot the son I know . . . he has suffered enough,” may have meant hiscondition was taking away his personhood or that the family as well,had suffered enough. Consideration of what Mr. E would want, whatwas fair, and what he was entitled to, served to bring the decision-mak-ing into a more familiar context of the family, instead of the intensivecare unit. Being available to each other and offering moral credit whereit was due, family members reconnected and became a relational re-source to one another, engaging in an ethical discussion that created acontext for healing and, ultimately, consensus regarding the end-of-lifedecision.

The evolving reality of withdrawing life-support became especiallymetaphoric for Mr. E’s mother as she struggled to hold on to a son whoshe had literally carried in her arms for many years in his youth. Herstory revealed a family history and ethos in which she had merited thefamily’s trust to voice its consensus about life and death decisions; shehad honored her commitments and responsibilities, not the least ofwhich was the care of her son. Thus, as she told her story, she wasshown deference and consideration by family members. That the familyspokesperson was first the patient’s sister and then his mother, ratherthan his spouse, suggests the spouse may have been showing specialconsideration due her husband’s family, especially his mother for herloyalty and caregiving. Clinically speaking, such consideration is sug-gestive of the myth of a family matriarch that provided cohesivenessand stability in the family system over the years. Ms. E may have beentaking on the role of an adult child of her husband’s mother, a role withwhich she appeared comfortable; her family background was of lowersocioeconomic status, which may have also contributed to her beingdeferential. Morally, she may have had residual unfinished businesswith her husband or a sense that she was not able to accept full responsi-bility and thus deferred this choice to her mother-in-law. Yet, such anapparent ability to reverse and expand caregiving roles may be viewedas adaptive, if not compensatory, during a time of loss and crisis. Themoral equivalent of this apparent role flexibility was that the patient’smother merited the role of family spokesperson. The social worker wasable to increase family awareness of its own process as it related toend-of-life decision-making by engaging family members in an ethicaldialogue that incorporated their stories. Unlike the problem stories ofthe first meeting (what happened and why?), second meeting (what canwe do?), and third meeting (what should we do?), in the fourth and lastfamily meeting the story told by patient’s mother became the dominant

Larry W. Foster and Linda J. McLellan 47

story, one that, in contrast to the problem stories, was viable and liberat-ing, rather than constraining, in effect (Adams-Wescott & Isenbart,1996). It contextualized the moral dilemma and helped family membersto move forward in their grief process; from the initial phase of shockand disbelief, to an increased awareness of the pending loss, the anguishof making an end-of life decision, and a sense of resignation, themother’s story, which encapsulated the meaning of her son’s life,served as a turning point enabling family members to envision a futureas they contemplated their loss.

CONCLUSION

Just as terminally ill patients are often seen coming to closure withloved ones at the bedside, there is also a parallel process that occurswithin and among family members and friends. The case of Mr. Eserves as a reminder that, while “letting go represents the ultimate painof grief ” (Sanders, 1989, p. 1), the greatest loss is not of person but ofmeaning. The search for meaning and closure is especially difficult incases of sudden and unexpected death. Families may not only want butneed an ethical, as well as clinical, exploration and discussion of theirissues at life’s end. Intimate and descriptive facts about ethical dynam-ics of the family system are revealed as justification for its patterns ofroles and relationships that impact end-of-life decision-making. Such acontextual focus includes, but is not limited to, systemic thinking;opened up are new possibilities for social work to claim more of a rolein the moral domain of end-of-life decision-making. Although the con-textual nature of the decision-making may vary among cases, essentialto all cases is an ethical discussion and language that speaks to and facil-itates the subjective and narrative voice in families. It is this voice thatreveals the ethical dynamics within family systems and the moral impli-cations of member interdependence, or lack thereof, for the deci-sion-making process. When a patient’s family is not ready to make anend-of-life decision because of unresolved grief, the social worker canfacilitate the decision-making process by exploring ethical dynamics ofthe family system and addressing unresolved moral, as well as the clini-cal, aspects of grief and emotional pain through family-centered ethicaldiscussions. Such discussions help to not only capture the meanings of aloved ones life but to settle issues of moral accountability, enablingfamily members to move forward in the grief experience. As such, these

48 SOCIAL WORK IN HEALTH CARE

discussions create the context, the voice, and the choice in end-of-lifedecision-making.

Finally, as also portrayed in the case, end-of-life decision-makinghas both a biomedical-ethical and a psychosocial-ethical dimension.Although the roles of bioethical and psychosocial clinicians are com-plementary, they are not interchangeable. Therefore, assuming a readi-ness on the part of social workers to address ethical issues appearingmore biomedical in nature may not be reasonable. Neither is it reason-able to expect the same from bioethicists with respect to ethical issuesappearing more psychosocial in nature; thus the need for collaboration.Moreover, given the breadth of calls in the literature and the media toadvance practice in end-of-life care, social workers must be proactiveon the interdisciplinary team when working with families faced withcostly, complex, and difficult end-of-life choices. As presented herein,a contextual approach to ethical decision-making at the end of life is aunique way of thinking and doing, not just a synthesis of bioethical andpsychosocial perspectives and practices. Including more of a family fo-cus, especially by exploring ethical dynamics of the family system andtranslating psychosocial insight into ethical discussions supportive ofits members, their stories and decisions, enriches social work’s role inthe moral domain without confusing the descriptive is and the norma-tive ought in ethical decision-making regarding end-of-life choices. So-cial workers need not be philosophers to raise and respond to normativeissues in such decision-making.

Manuscript Received: 10/16/00Accepted for Publication: 01/16/01

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