br j soc work 2011 leichtentritt 1459 76

Beyond Favourable Attitudesto End-of-Life Rights: The Experiencesof Israeli Health Care Social Workers

Ronit D. Leichtentritt*

Ronit D. Leichtentritt is a senior lecturer in the Bob Shapell School of Social Work, Tel AvivUniversity, Israel. Her research interests include interpersonal and social justice issues in deathand dying, as well as attitudes, meanings and values surrounding end-of-life decisions and

disenfranchised grief experiences.

*Correspondence to Ronit D. Leichtentritt, Ph.D., Bob Shapell School of Social Work, TelAviv University, Tel Aviv 69978, Israel. E-mail: [email protected]

Abstract

This is a qualitative study of eighteen Israeli health care social workers’ experiences at

times of end-of-life decisions in light of the 2007 law that legitimises patients’ rights

to withhold life-sustaining treatments under certain conditions. Results convey a trou-

blesome picture in which social workers tend to remove themselves from involvement

in these decisions due to an experience of inefficiency. The study reveals two main

obstacles to involvement in end-of-life decisions: (i) fears about the well-being of the

dying patient, his/her family members, their colleagues and themselves; and (ii) the

impossible position of social workers due to conflicting demands between (a) percep-

tion of their role and expectations of the multidisciplinary team, (b) personal views

and the patient’s wishes, (c) personal views and professional norms, (d) organisational

principles and the new law, and (iii) the patient’s rights and the procedures required

to implement them. Implications for social work education and socialisation, as well

as the practice of health care social workers, are discussed.

Keywords: End-of-life decisions, hermeneutic-phenomenology, inefficiency, Israeli social

workers

Accepted: January 2011

# The Author 2011. Published by Oxford University Press on behalf of

The British Association of Social Workers. All rights reserved.

British Journal of Social Work (2011) 41, 1459–1476doi:10.1093/bjsw/bcr006Advance Access publication January 26, 2011

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Introduction

Researchers and clinicians alike recognise that social workers can assisthealth professionals to clarify roles and viewpoints in the many decisionsneeded at the end of life (Snow et al., 2008; Werner et al., 2004). Socialwork training interweaves physical, psychological and social elementsaimed at enabling health care providers to encourage and ‘promote inter-disciplinary collaboration which is highly important at times of end-of-lifedecisions’ (Werner et al., 2004, p. 28). However, these recommendationsoverlook the fact that we know little about social workers’ experienceswith, or their involvement in, end-of-life decisions. The current studyaddresses this lacuna and makes a preliminary attempt to reveal the experi-ences of Israeli health care social workers in decision-making processes atthe end of life.

Two research contexts

Two contexts are relevant to this research: Israeli society, in which thisstudy took place, and professional guidelines for social workers concerningend-of-life issues.

The uniqueness of Israeli society

DeSpelder and Strickland (2007) claim that, by understanding how peoplein other cultures approach death and end-of-life decisions, we can shed lighton our own viewpoints. Israeli society regards end-of-life decisions in aunique way, as indicated by group behaviours and policy decisions thattry to accommodate the value of personal autonomy within a paternalistcommunitarian state that is influenced by Jewish tradition (Glick, 1997).In a communitarian framework, values are embedded in a high degree ofcollective consciousness, solidarity, belonging, mutual concern and interde-pendence. The communitarian philosophy downplays individual interests(which receive priority within an individualistic philosophy) in favour ofcollectively defined ideas and values (Glick, 1997). Thus, in strong contrastto the USA and Europe, which give substantial weight to individual auton-omy at the expense of a communitarian perspective, Israel attempts toreconcile these opposing moral philosophies. These coexisting contradic-tory forces in Israel society are reflected in the relatively new law(January, 2007) concerning the dying patient’s rights.

The law legitimises patients’ rights to withhold life-sustaining treatments,such as chemotherapy, radiation and dialysis, in cases of significant suffer-ing (section 13). It further allows for the ‘double effect’, namely situations in

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which reducing pain and suffering raises the risk of hastening death, pro-vided that death is not certain, but only possible. With respect to withdraw-ing existing treatment, the law specifies ‘that continuing treatment shouldnot be withdrawn . . . . [Only] a discrete treatment can be removed’(section 12). A discrete treatment is defined as one given in cycles (e.g.dialysis, chemotherapy), involving times of no treatment and allowing fora clear distinction between the beginning of a new treatment and the endof the previous one. In contrast, continuing treatment is given withoutbreak (e.g. use of a respiratory machine). This distinction between discreteand continuing treatments is, as far as I know, unique to Israeli society.

These contradictory forces are further reflected in the lack of appropriateterminology in the Hebrew language referring to the individual’s end-of-liferights (for a comprehensive overview, see Leichtentritt et al., 1999). Fur-thermore, in Israel, one can find contradicting perspectives concerningthe appropriate care for dying people following the Jewish tradition andthe dying patients’ right law. Since there is no clear separation in Israelbetween state and Judaism, the Jewish perspective influences all Jewishpeople living in Israel, regardless of their level of religiosity (Neumanet al., 2006).

Social workers’ perspectives on end-of-life decisions

Social work interventions in Israel are highly influenced by social workpractices and regulations developed in Western cultures (Spiro et al.,2002). In 1993, the National Association of Social Workers (NASW)became one of the first professional organisations to respond to theethical dilemmas inherent in end-of-life care by issuing a formal policystatement. Based on the principle of autonomy, the statement supports indi-vidual choice in all aspects of life and death. According to this policy, clientself-determination is defined as ‘the right of clients to determine the appro-priate level, if any, of medical intervention and the right of clients to changetheir wishes about their treatment as their condition changes over time orduring the course of their illness’ (NASW, 2003, p. 41). The policy also out-lines the appropriate roles for social workers in end-of-life decision making.These include providing information necessary for an informed choice,exploring alternatives, helping individuals express their thoughts and feel-ings, and helping individuals and families to deal with grief and loss(Csikai, 2004).

The NASW statement has been found to be acceptable to health caresocial workers in the UK, Canada and Israel, who largely report positiveattitudes towards dying patients’ rights to be involved in end-of-lifedecisions (Csikai, 2004; Ogden and Young, 2003). Yet, examining thesocial work literature, it becomes evident that we know little about theexperiences and practices of social workers at times of end-of-life decisions.

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Method

To gain insight into the experience of end-of-life decisions among Israelihealth care social workers, the method of hermeneutic phenomenologywas chosen, primarily because it focuses on the person and the context ofhis/her existence (Ikkink and van Tilburg, 1998). Hermeneutic phenomen-ology is essentially the study of lived experiences through which the individ-ual’s beliefs, values and commitments can become known and clarified(van Manen, 1990).

Participants

Social workers in medical and geriatric settings are closer to end-of-life situ-ations and thus more likely to experience the ethical dilemmas and practicessurrounding the dying patient’s rights. The informants for the current studywere eighteen health care social workers, of which eleven worked in generalhospital settings and seven worked in geriatric hospitals. All were profes-sionally involved in the care of dying patients. They had three to thirty-fouryears of experience in the social work profession and a minimum of two yearsin a hospital/geriatric setting. They were all Jewish women, with agesranging from twenty-six to sixty-one. All held a bachelor’s degree (BSW)and nine held a masters’ degree in social work (MSW).

Data collection

Data were collected via semi-structured interviews (Patton, 1990). Inter-views were conducted in Hebrew and the average duration of an interviewwas about an hour and a half.

The interviewer began by asking participants to recall a case of a dyingpatient in their care whose end-of-life requests were discussed with thepatient, family members and/or the multidisciplinary staff. While discuss-ing this case description, the probing questions included, for example:Who initiated the discussion? Who was involved in the decision process,and why? Can you tell me about the dynamics within the multidisciplinaryteam? What was your role in the process? The interview continued with amore general discussion of the participant’s perspective on the role ofsocial workers in these sensitive situations, referring to their actual experi-ences as well as their ideal perceptions.

Data analysis

Interviews were analyzed using the principles of hermeneutic phenomenol-ogy, as influenced by Ricoeur (1976) and described by Lindseth and Norberg


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(2004). The analysis and interpretation of the text involved a dialectic move-ment between understanding of the whole and of parts of the text throughthree methodological phases. In the first phase, the interviews were readwith an open mind in order to gain a naive understanding of socialworkers’ experiences at times of end-of-life decisions. Next, a structuralanalysis was performed, in which parts and structures of the text were ana-lyzed. The text was divided into meaning units that were condensed, com-pared across interviews, grouped and labelled. The labelled groups of themeaning units were then abstracted into themes. Lastly, a comprehensiveunderstanding was formulated. This step emanated from and was supportedby a critical dialectic between the first two phases (Ricoeur, 1976). The com-prehensive understanding was based on the dialectical movement betweenunderstanding and explanation, between the whole and the parts of thetext, and was the final interpretation out of several possible interpretationsof the text, upon which participants agreed (Lindseth and Norberg, 2004).

Evaluation criteria

Techniques suggested to enhance validity in hermeneutic phenomenologystudy include prolonged engagement with respondents, maintaining anaudit trail of analytical decisions and thick description of the data (Creswell,1998). All of these recommended procedures were implemented in thisstudy. In addition, results were shared with the informants, who providedfeedback supporting the interpretation of the narratives.

Results

I started this research with the aim of revealing the experiences of socialworkers during end-of-life decisions and soon discovered that they rarelyhave such experiences. According to participants, the law that enablesend-of-life decisions is seldom implemented within hospital settings inIsrael. Nonetheless, the original research question was maintained, as allparticipants did recall at least one occasion on which they were somewhatinvolved in the ethical dilemma concerning end-of-life decisions.

Naive understanding

Almost all participants support patients’ rights to withhold and withdrawtreatment. Yet, their favourable attitude does not capture the complexityof Israeli social workers’ experience with end-of-life decisions. Informantsreported their preference to refrain from involvement in such decisions.The main role social workers accept for themselves is one of negotiating


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between senior physicians and the dying patient’s family members, whileavoiding active participation in the decision-making process.

Structural analysis

Two themes were revealed. The first addressed the undesirable effectssocial workers attributed to their involvement in end-of-life decisions andwas named ‘the many branches of fear’. The second theme captured their‘impossible position and location’ (Dorit) at times of end-of-life decisionsand was named ‘between a rock and a hard place’.

The many branches of fear

The main experience social workers recalled while discussing their involve-ment in end-of-life decisions was a sense of fear. The term ‘fear’ (pahad inHebrew) was commonly used by informants, and was often one of their firstwords: ‘What is my experience? I am fearful of those moments, fearful ofthe need to communicate these [end-of-life] ideas’ (Noa). Fears are essen-tially the result of ‘facing an uncertain existential threat’ (Lazarus, 1993,p. 26). It is therefore not surprising, from a non-professional perspective,that there were a core set of feelings associated with end-of-life decisions.

The initial reaction evident in the narratives is an emotional one. Partici-pants chose not to discuss the importance of the new law in terms of thedying patient’s rights, means of empowerment or a sense of control overone’s own dying process—all of which were found relevant in previousresearch addressing this issue (Leichtentritt, 2002)—but rather reacted ina personal–emotional way.

The social workers referred to fears from various perspectives, including(i) fear that professional health care providers would lose hope; (ii) fearthat the patient would lose hope; (iii) fear of the patient reaching an unin-formed decision; (iv) fear for the family members who have to make difficultethical decisions; (v) fear of being involved in life-and-death decisions; and(vi) fear about the autonomy and power of the dying patient. In the infor-mants’ perceptions, all of the discussed fears fall within their responsibilitiesand concerns, yet are not exclusively associated with the social workprofession: ‘. . . I feel responsible for the well-being of the patient and hisfamily, but also for the well-being of the nurses and physicians I workwith’ (Tamar).

The fear of professionals losing hope. One scary thought mentioned byinformants involved fear of their colleagues losing hope. Discussing withpatients their right to withhold or withdraw from life-sustaining treatmentwas perceived as a statement reflecting loss of hope among professionals.Hope was a central concept addressed throughout the interviews. Social


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workers referred to hope not in the naive sense of recovery, but rather inthe sense of ‘not giving up’ (Sara), ‘something can still be done in theeffort to assist the dying patient’ (Tamar). The participants’ rationale wasgrounded in the illusive assumption that medical science always has some-thing to offer and that the physician is never helpless in the ongoing battleagainst disease.

Israeli health care social workers referred to hope in the sense of continu-ing the fight against the disease (and not in the sense of a cure). For them,hope exists as long as life can be prolonged. This form of hope is oftenreferred to as ‘false hope’ (Yates, 1993) and is well grounded in the domi-nant depiction of the relationship between medical science and life-threatening diseases (Beste, 2005):

Stopping treatments means losing hope and you cannot function here if youhave no hope (Dina).

When you decide to stop treatment, it means that you’ve lost hope . . . .You can’t have that happen to you too often . . . the emphasis here is on‘doing.’ By doing we are maintaining hope for ourselves and for thepatients . . . this is what allows us to feel worthwhile, meaningful, useful,helpful . . . . It is also important for the patients; they know that their careproviders are doing something to assist them (Nora).

Informants rarely referred to providing patients with the hope of dyingpeacefully, in dignity or painlessly—in contradistinction to the hopevoiced by dying patients in the terminal stage of their life (Leichtentrittand Rettig, 2000; Eliott and Olver, 2009).

Fear of the patient’s losing hope. The importance of maintaining hope, inthe specific sense of continued use of advanced technology, was furtherevident when participants referred to the consequences of discussing thedying patients’ rights from the perspective of the patient’s well-being—the patient’s losing hope. Social workers viewed their role in caring for adying patient to include encouraging his/her to maintain hope, and theyperceived the discussion of end-of-life options and the provision of hopeas conflicting obligations (Eliott and Olver, 2009). The notion of offeringpatients the opportunity to contemplate the possibility of halting medicaltreatment was seen as taking away their hope:

We must do everything to maintain the patient’s wishes to improve . . . . Thiskeeps him going; this gives him hope (Michal).

You do not take away a dying person’s hope . . . . That’s what givesmeaning to his life! (Orna).

Hope is constituted as a valuable possession of the patient and as affectedby interpersonal interactions. In keeping with recent literature, participantsdiscussed their goal of intervening in terms of encouraging, maintaining,fostering and even instilling hope in patients (Eliott and Olver, 2009). Par-ticipants did not associate discussing the patient’s right to withhold or with-draw life-sustaining treatment with valuable concepts in social work ethics,


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such as ‘autonomy’ and ‘self-determination’ (Reamer, 1990), or to maingoals in social work interventions, such as empowerment and protectionof rights (Karoll, 2010).

The efforts that were put into maintaining hope did not allow participantsto address or discuss dying—the unavoidable end—with the patient:

I do not discuss the issue of death or dying with them . . . . I try to make themfeel better, not worse . . . we mainly try to find spots in their life that providethem with hope, something to hold onto, to look forward to (Michal).

Fear of discussing end-of-life preferences. Informants recognised theimpact of their own fears and concerns on their willingness to openlydiscuss end-of-life issues. In Israel, the subjects of death (Cohen, 2010)and dying (Leichtentritt et al., 1999) are still perceived as taboo and arerarely addressed or discussed openly among family members:

It is scary to think about death in such a concrete way, talk about it in anopen and honest conversation with a dying person . . . . I do that only ifthe patient initiates the discussion . . . . I can’t think of any conversations Ihave had with dying patients on the issue . . . maybe just a word here orthere . . . . I admit I don’t bring the issue into the room . . . . When the issueis already there [in the room], I tend to open the window [laugh] and letit out (Rebecca).

Participants refrained from discussing end-of-life issues because of theirneed for self-protection and the protection of others. Their preference notto initiate a discussion on patient rights resulted in ‘technical dialogues’when the issue was raised by others:

I don’t talk with patients about the new law . . . I’m not sure anyone does.I’m not the one to bring up the subject . . . . When I am asked by patientsor family members, I provide them with relevant information, I describeto them what the law is about and how they can implement it (Tamar).

Several of the participants distinguish between the patient and his/herfamily. They recognise their own fears as paralysing them from talkingabout dying with patients, but perceive themselves as strong enough toaddress the issue with family members:

If family members want to think out loud about the various options and thebest way to care for the patient . . . obviously I will assist them and be herefor them . . . . I know it is paradoxical, but I’m sorry, I can’t see myself beinginvolved in such a discussion with the dying patient . . . . It’s too risky . . . atleast I know my limits (Sara).

This form of action diminishes the dying patient’s ability to reachend-of-life decisions, as s/he lacks accurate information.

Fear of the patients’ reaching uninformed decisions. Involving patients inend-of-life decisions requires health care providers to offer them accurateand relevant information concerning their illness, its symptoms and likely


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prognosis. These requirements often do not apply in cases of dying patientsin Israel:

I do not lie to patients, but it is not like telling them the whole truth and itsfull meaning to their face . . . . You give bits and pieces based on the patient’squestions and desire for knowledge (Nora).

Although this could be interpreted as suggesting that Israeli health caresocial workers adopt the patient-centred approach in regulating the infor-mation they provide to the dying patient (Zilberfein and Hurwitz, 2004),the fact that participants rarely discussed end-of-life preferences withtheir patients suggests that what guides their communication with them isnot the ‘patient’s subjective experience, preferences and variations’ (Zilber-fein and Hurwitz, 2004, p. 305), but rather the health care professional’spersonal belief system, emotional reactions and clinical opinion. Suchpartial communication, suggesting a paternalistic approach, raises the fearof patients reaching uninformed end-of-life decisions:

In order to allow people to truly decide, they must know exactly what isgoing on and what the future holds . . . . Unfortunately they are too oftenunaware . . . . [There are] many reasons we all ‘play this game’ . . . becauseit is very difficult to tell . . . because it is easier this way, it is often easierfor the family . . . . I know it is ethically questionable, but reality is muchmore complicated than ethical guidelines (Vered).

The provision of no information or partial information to patients hasreceived heavy criticism from various social forces, such as civil rightsmovements, feminists and the autonomy movement in medicine, all ofwhich strongly oppose the idea of medical paternalism (Parker-Oliver,2002).

Fears for the family. Social workers were concerned with the well-beingof the dying patient’s family members. This concern corresponds with therole description of social workers in a health setting (Taylor-Brown et al.,2004). One of the social worker’s goals when intervening with familieswho experience anticipatory mourning is to minimise guilt feelings andreduce the sense of blame (Rando, 2000). In the social workers’ view,both are likely to be increased if treatments are withdrawn or withheldfrom the dying patient:

The basic stance of the family is one of guilt . . . . There is always a sense theycould have done more, that they have not done enough . . . they could havedone better. This initial position does not allow them to reach any decisionother than the one that life ought to be prolonged . . . . If this is the case, whyraise the issue? Why cause more difficulties when we already know theycannot act contrary to the basic family standpoint? . . . . They are limitedby social expectations and norms (Michal).

The concern for family members was especially evident in scenariosinvolving a conflict of interest between them and the dying patient. Insuch cases, the informants acknowledge that the client whose interests


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are of their highest concern is not the dying patient, but his/her familymembers: ‘They are the ones who will have to continue living with thedecision’ (Noa). Thus, participants assumed the role of protecting familymembers from reaching difficult decisions.

The current theme has delineated the various fears health care socialworkers raised while discussing their experiences at times of end-of-lifedecisions. Overall, they acknowledged and supported the patient’s rightto end life, yet at the same time were emotionally threatened, highly con-cerned and fearful of patients implementing these rights. These fears over-shadowed the social work principles of self-determination andempowerment. Even though social work is a value-based profession(Reamer, 1990), at times of end-of-life decisions, individuals’ emotionalreactions seem to dominate the professional representatives’ actionsmore so than values and ethical duties.

Between a rock and a hard place

Participants perceived themselves in a ‘catch 22 situation’ (Eti) whenend-of-life decisions are explicitly or implicitly discussed. They referredto themselves as ‘being torn’ (Noa), ‘being pulled in different directionsby two powerful and opposing forces’ (Hagit). ‘I feel as if I am between arock and a hard place . . . [and] have very little freedom of choice’ (Sara).This position of feeling torn is the result of a number of contradictorydemands. The first is the conflict between the participants’ perception oftheir role description and what they believe the multidisciplinary teamexpects of them (role expectation). The second involves a clash betweenthe participants’ personal views and the imperative to fulfil the patient’swishes. The third involves tension between the informants’ personalviews and how they evaluate the social work profession’s perspective onend-of-life issues. A fourth conflict entails differences between organis-ational perspectives and the requirements of the new law. Finally, there isthe tension between the patient’s individual rights and the required pro-cedures to implement these rights.

Role description versus role expectations. Participants argued they shouldnot be involved in end-of-life decisions, claiming it is not within the scope oftheir role description. Interestingly, social workers perceived themselves asresponsible for the well-being of the dying patient and his/her familymembers, as indicated in the previous theme, but did not include involve-ment in end-of-life decisions within the bounds of their concerns:

If the medical profession does not want to deal with an issue, they throw iton the social worker’s doorstep. We as a profession are willing to takeeverything upon ourselves . . . . Every time there is a ‘hot potato’ [a contro-versial social issue] in the air that no other profession is willing to address . . .social workers are the ones who are left to do the job . . . this time we eed to


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take five steps backwards and let physicians and nurses figure out how todeal with the dying patient’s rights (Orna).

I do not think I have either the training or the knowledge to be involved inthese decisions . . . . Physicians at least ave relevant information to give topatients (Zohar).

Participants felt torn between what they perceived as their role and whatthey felt is required and expected of them by other members of the multi-disciplinary team. They expressed a sense of pressure from team membersto be involved in the decision-making process:

They [physicians] expect me to reach the same understanding with familymembers that they themselves hold concerning the appropriate care forthe patient (Dana).

Undoubtedly, everything that involves talking with patients or theirfamily members ends up on my desk . . . they [the team] expect me to bethe one to deliver the message to the patient (Michal).

This description of the multidisciplinary team’s expectations correspondswith the professional literature on the social worker’s role in palliative care:one that ‘support[s] patient, family and staff values and preferences . . .exploring all points of view . . . respecting the individuals involved and . . .

using professional relationships to promote the goals of all’ (O’Donnell,2004, pp. 172–3). However, although the professional literature assignsthese roles and tasks to social workers, participants did not perceive thismulti-task description to correspond with their understanding of theirrole description. The gap is partly due to the lack of palliative care organ-isations in Israel, where dying patients are most likely to be cared for anddie in hospital settings and where O’Donnell’s (2004) description of thesocial worker’s role seems inapplicable.

Participants referred to their working conditions (e.g. part-time jobs,heavy workload, little acquaintance with patients and family members) aspreventing them from meeting the team members’ expectations for theirinvolvement. According to informants, the overload of hospital socialworkers, which is documented in the literature (Renzenbrink, 2004), inhi-bits their involvement in end-of-life decisions:

Remember, this is a hospital setting; my acquaintance with the patients isvery limited . . . I need to know my limits! (Tamar).

There are nurses and physicians here 24/7, I work 20 hours a week . . . .You can’t expect social workers to facilitate these decisions (Noa).

Personal view versus implementing the patient’s wishes. The most difficultsituations were described by informants who held somewhat unfavourableattitudes towards patients’ involvement in end-of-life decisions: ‘I do notthink people at that time in their life should make the decision . . . . It issomewhat unfair to ask them to make the call’ (Hagit). In these cases,the experience of ‘being torn’ was an especially powerful one, resulting indescriptions such as ‘feeling powerless’ and ‘meaningless’:


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I had one patient who released himself from the hospital in order to stop alltreatment . . . . I spent hours trying to convince him otherwise . . . . Severalweeks later I heard he died . . . I felt as if it were my fault . . . . There was astrong sense of powerlessness (Shani).

If, for example, the patient decides he wishes to stop treatment, even if Ibelieve he’s making the wrong decision, there’s nothing I can do . . . . It’svery hard to watch, knowing I am powerless in the situation (Einat).

This internal conflict was very painful for these informants. This conflictwas not with the client, but rather within the social worker, who is expectedto help resolve end-of-life dilemmas within the client’s frame of referenceor worldview, even though that differs from his/her own viewpoint.

Personal versus professional view. Most of the participants described aclash between their personal view of end-of-life decisions and the viewthey believed the social work profession requires them to hold and present:

If I were in a similar position, I wouldn’t want to receive any medical treat-ment, but as a professional we are not tolerant of other alternatives. Here,I do not represent myself; I represent the profession (Dana).

My personal perspectives are not truly relevant . . . . Think of the socializa-tion process I went through. If a patient says he wishes to die, I was taught tohelp him reach a different decision . . . . The profession has not changed . . . .You can’t expect differently from a profession that is obligated to followsociety’s norms and values (Vered).

The Israeli social work profession—as an academic discipline, as well as aworking organisation—has not changed or adopted the new law and regu-lations concerning the dying patient’s rights. The emphasis the professionputs on life, in contradistinction to quality of life, leaves its representativesin a difficult position with respect to end-of-life issues.

Organisational perspective versus the new law. A parallel situation wasdescribed when participants compared the demands of the new law to hos-pital norms. In the social workers’ perceptions, no change has occurred inorganisational norms since the new law was introduced. Although newpractices have been approved, no practical changes have occurred in theparticipants’ working environment. This observation receives empiricalsupport in a survey examining implementation of the new law in Israeli hos-pitals (Kranzler and Ayalon, 2009):

Major changes need to be made in the ways people around here think inorder for such a law to truly be implemented (Tamar).

When everyone around is making every effort to prolong life, raisingthe issue of patients’ rights, which are basically about ending life, is anoxymoron (Bilha).

Informants talked about the preparations they underwent after the lawwas approved by Parliament and prior to its implementation (a twelve-month period). They described lectures and courses they attended, yetrecognised that these procedures were insufficient, as they emphasised pro-viding health care practitioners with information, but did not promote


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ethical discussions or address the emotional aspects that end-of-lifedecisions involve:

So, there is a new law . . . . I can tell you everything that is written there. Wetook a preparation course, but nothing has changed here, in the atmosphere,in the way we work . . . in the way we talk to the patient and the family(Sharon).

The hospital made an effort to prepare health care teams for the change . . . .They did a reasonable job, although in my view much more attention shouldhave been given to the individual in this very difficult situation—his feelings,his values (Orna).

Previous studies have demonstrated the importance of organisationalvalues and norms in predicting the individual’s behaviour and workingpattern (Peleg, 2004). Because Israeli hospitals have not yet made theexpected changes in the organisational atmosphere, values and priorities,individuals’ rights at times of end of life are not being adequatelyimplemented (Kranzler and Aylon, 2009) and these new norms of behav-iour have not been adopted by the organisations’ employees.

Long implementation procedure versus scarcity of time. Participantsdescribed the long, confusing procedures and documentation required toimplement wishes to withhold or withdraw treatment. At the same time,they talked of the dying patient’s wish to implement the decision shortlyafter reaching it:

You feel like an idiot providing family members with a 20-page booklet thatthey have to read through in order to implement their request (Bilha).

It is an unrealistic procedure for a dying person to go through . . . . In orderfor this law to start being implemented, the procedure must be much, muchsimpler (Nora).

These long and confusing procedures were described as an additionalfactor reinforcing perceptions of being ‘stuck’. Participants felt caughtbetween the patient’s wishes and the protections built into the law withthe aim of reducing the risk that it will serve as a platform for abuse(Hardwig, 1997).

The current theme highlights the difficult position Israeli social workersfind themselves in today as new forms of practices are introduced. This pos-ition, alongside the various fears they associate with end-of-life decisions,result in non-implementation of the new patient’s rights law within hospitalsettings (Kranzler and Ayalon, 2009).

Comprehensive understanding

According to the narratives, inefficiency is the Israeli health care socialworker’s experience at times of end-of-life decisions. Inefficiency isdefined as lacking the ability or skill to perform effectively (incompetence),


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as well as not producing the intended result (ineffectiveness) (CambridgeDictionary of Psychology, 2009). Both of these aspects—incompetenceand ineffectiveness—are relevant in the informants’ experience. Whileinformants did not explicitly refer to the concept of ‘inefficiency’, theirstatements reflect a sense of being unproductive and incompetent attimes of death and dying. Recognising inefficiency as the social workers’experience is troublesome, as efficiency is one of the main criteria for eval-uating social work interventions and practices (Epstein, 2000).

Discussion

The discussion elaborates on the main issues raised in the results section:the participants’ fears, grounded in their refusal to give up hope, and the dif-ficulties they encountered while working within a multidisciplinary team.Both contributed to the experience of inefficiency at times of end-of-lifedecisions.

Refusal to give up hope

Caring for patients who are terminally ill often requires one to maintain adifficult balance between (i) providing the best care, or most aggressive carepossible, knowing that the chance of recovery is extremely unlikely, and (ii)accepting the inevitability of death. This description does not apply to theresearch participants’ experience, as they continued to hold onto thebelief that one should never give up hope, no matter how hopeless the situ-ation. The following discussion provides tentative explanations for the par-ticipants’ refusal to give up hope. In doing so, I adopt a multi-layeredperspective, claiming that any attempt to understand private experiences,including Israeli social workers’ experiences at times of end of life, musttake social, cultural, political and organisational contexts into consideration(Trevillion, 2000).

Hope is a valuable concept within Israeli society and the Jewish tradition.In the traditional Jewish view, ‘where there is life, there is hope’ (Jakobo-vits, 1986, p. 95). Historical facts reinforce the importance of hope, the mostprofound one being the memory of the Holocaust. There is a common viewthat, since the Nazis made decisions about whose life was worthwhile, it iswrong for anyone to put a value on human life (Leichtentritt et al., 1999).Moreover, the Holocaust led to the conception of Israel as a metaphorfor rebirth, for regenerating the Jewish people (Sturman, 2003). There isthus a reluctance to give up on any patient, no matter how hopeless.

The narrow societal definition of hope as surviving and prolonging life ismirrored in the organisational context in which participants work (Peleg,2004) as well as in their own perceptions. Defining hope as maintaining


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life serves as an obstacle to implementing the dying patient’s rights and con-tributes to the social workers’ experience of inefficiency at times ofend-of-life decisions.

Working with a multidisciplinary team

Participants felt pressured from their team members at times of end-of-lifedecisions. They used strong metaphorical phrases to describe their experi-ences while working with a multidisciplinary team. Reviewing the litera-ture, it is clear that multidisciplinary collaboration is difficult for manyreasons, including the idiosyncrasies of socialisation into the profession, dis-tinctions in roles and differences in moral reasoning perspectives (Baumannet al., 1998). Nonetheless, unlike the findings in the current research, indi-viduals caring for dying people in hospice programmes reported work ina multidisciplinary team as a collaborative and positive experience(Corless and Nicholas, 2004). What might explain the difference in theexperience is the term each organisation (hospice versus hospital) uses todescribe the team (interdisciplinary versus multidisciplinary).

Multidisciplinary is ‘linked to parallel play, whereas interdisciplinaryconnotes collaboration without hierarchy’ (Corless and Nicholas, 2004,p. 167). The focus of the interdisciplinary team is on the knowledge, exper-tise and personal talents possessed by each team member (Ryan, 1999). Theteam head is decided by the needs and wishes of the care recipient, and allmembers work collaboratively to meet patient and family concerns andneeds. This is a far cry from the experience described in this study, whereteam work was mainly multidisciplinary.

Implications

The current findings have far-reaching implications for both social workeducation and health care social work practice. The worrisome comprehen-sive understanding concerning participants’ experience of inefficiency attimes of end of life demonstrates a lack of knowledge and skills amongIsraeli health care social workers. Examination of social work curriculumsin various Israeli universities reveals that very little, if any, in their pro-fessional socialisation address issues concerning death, dying and bereave-ment or palliative care and end of life. Likewise, little attention is given tothe challenges of working in multidisciplinary teams. Attention needs to bepaid in the social work curriculum to the universal unavoidable experienceof death and dying, as well as to skills and strategies for effective practice ina multidisciplinary team in order to address the multiplicity of problemsamong dying people (Damron-Rodriguez and Saltz, 2002).


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Furthermore, social workers who are involved in end-of-life care mustexamine their own values and fears concerning end-of-life issues. Suchinsight is important to assure that the starting point for services is definedby the dying person and the family, and not by the professional role, organ-isational preferences or the individual social worker’s fears and concerns.These critical reflective discussions can minimise false hope, increase col-laboration with multidisciplinary team members and promote an open,honest dialogue between social workers and dying patients, thus contribut-ing to social workers’ efficiency at times of end-of-life decisions.

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