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Beyond Favourable Attitudes
to End-of-Life Rights: The Experiences
of Israeli Health Care Social Workers
Ronit D. Leichtentritt*
Ronit D. Leichtentritt is a senior lecturer in the Bob Shapell School of Social Work, Tel Aviv
University, Israel. Her research interests include interpersonal and social justice issues in death
and 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, Tel
Aviv University, Tel Aviv 69978, Israel. E-mail: ronitl@post.tau.ac.il
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, 1459–1476
doi:10.1093/bjsw/bcr006
Advance Access publication January 26, 2011
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Introduction
Researchers and clinicians alike recognise that social workers can assist
health professionals to clarify roles and viewpoints in the many decisions
needed at the end of life (Snow et al., 2008;Werner et al., 2004). Social
work training interweaves physical, psychological and social elements
aimed at enabling health care providers to encourage and ‘promote inter-
disciplinary collaboration which is highly important at times of end-of-life
decisions’ (Werner et al., 2004, p. 28). However, these recommendations
overlook the fact that we know little about social workers’ experiences
with, or their involvement in, end-of-life decisions. The current study
addresses this lacuna and makes a preliminary attempt to reveal the experi-
ences of Israeli health care social workers in decision-making processes at
the end of life.
Two research contexts
Two contexts are relevant to this research: Israeli society, in which this
study took place, and professional guidelines for social workers concerning
end-of-life issues.
The uniqueness of Israeli society
DeSpelder and Strickland (2007) claim that, by understanding how people
in other cultures approach death and end-of-life decisions, we can shed light
on our own viewpoints. Israeli society regards end-of-life decisions in a
unique way, as indicated by group behaviours and policy decisions that
try to accommodate the value of personal autonomy within a paternalist
communitarian state that is influenced by Jewish tradition (Glick, 1997).
In a communitarian framework, values are embedded in a high degree of
collective consciousness, solidarity, belonging, mutual concern and interde-
pendence. The communitarian philosophy downplays individual interests
(which receive priority within an individualistic philosophy) in favour of
collectively defined ideas and values (Glick, 1997). Thus, in strong contrast
to the USA and Europe, which give substantial weight to individual auton-
omy at the expense of a communitarian perspective, Israel attempts to
reconcile 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 should
not 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 for
a clear distinction between the beginning of a new treatment and the end
of the previous one. In contrast, continuing treatment is given without
break (e.g. use of a respiratory machine). This distinction between discrete
and continuing treatments is, as far as I know, unique to Israeli society.
These contradictory forces are further reflected in the lack of appropriate
terminology in the Hebrew language referring to the individual’s end-of-life
rights (for a comprehensive overview, see Leichtentritt et al., 1999). Fur-
thermore, in Israel, one can find contradicting perspectives concerning
the appropriate care for dying people following the Jewish tradition and
the dying patients’ right law. Since there is no clear separation in Israel
between state and Judaism, the Jewish perspective influences all Jewish
people living in Israel, regardless of their level of religiosity (Neuman
et al., 2006).
Social workers’ perspectives on end-of-life decisions
Social work interventions in Israel are highly influenced by social work
practices 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 the
ethical dilemmas inherent in end-of-life care by issuing a formal policy
statement. Based on the principle of autonomy, the statement supports indi-
vidual choice in all aspects of life and death. According to this policy, client
self-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 change
their wishes about their treatment as their condition changes over time or
during 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 care
social workers in the UK, Canada and Israel, who largely report positive
attitudes towards dying patients’ rights to be involved in end-of-life
decisions (Csikai, 2004;Ogden and Young, 2003). Yet, examining the
social work literature, it becomes evident that we know little about the
experiences 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 Israeli
health care social workers, the method of hermeneutic phenomenology
was chosen, primarily because it focuses on the person and the context of
his/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 practices
surrounding the dying patient’s rights. The informants for the current study
were eighteen health care social workers, of which eleven worked in general
hospital settings and seven worked in geriatric hospitals. All were profes-
sionally involved in the care of dying patients. They had three to thirty-four
years of experience in the social work profession and a minimum of two years
in a hospital/geriatric setting. They were all Jewish women, with ages
ranging 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 interview
was about an hour and a half.
The interviewer began by asking participants to recall a case of a dying
patient in their care whose end-of-life requests were discussed with the
patient, 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 multidisciplinary
team? What was your role in the process? The interview continued with a
more general discussion of the participant’s perspective on the role of
social 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 through
three methodological phases. In the first phase, the interviews were read
with an open mind in order to gain a naive understanding of social
workers’ experiences at times of end-of-life decisions. Next, a structural
analysis 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 the
meaning units were then abstracted into themes. Lastly, a comprehensive
understanding was formulated. This step emanated from and was supported
by a critical dialectic between the first two phases (Ricoeur, 1976). The com-
prehensive understanding was based on the dialectical movement between
understanding and explanation, between the whole and the parts of the
text, and was the final interpretation out of several possible interpretations
of the text, upon which participants agreed (Lindseth and Norberg, 2004).
Evaluation criteria
Techniques suggested to enhance validity in hermeneutic phenomenology
study include prolonged engagement with respondents, maintaining an
audit trail of analytical decisions and thick description of the data (Creswell,
1998). All of these recommended procedures were implemented in this
study. In addition, results were shared with the informants, who provided
feedback supporting the interpretation of the narratives.
Results
I started this research with the aim of revealing the experiences of social
workers during end-of-life decisions and soon discovered that they rarely
have such experiences. According to participants, the law that enables
end-of-life decisions is seldom implemented within hospital settings in
Israel. Nonetheless, the original research question was maintained, as all
participants did recall at least one occasion on which they were somewhat
involved in the ethical dilemma concerning end-of-life decisions.
Naive understanding
Almost all participants support patients’ rights to withhold and withdraw
treatment. Yet, their favourable attitude does not capture the complexity
of Israeli social workers’ experience with end-of-life decisions. Informants
reported 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, while
avoiding active participation in the decision-making process.
Structural analysis
Two themes were revealed. The first addressed the undesirable effects
social workers attributed to their involvement in end-of-life decisions and
was named ‘the many branches of fear’. The second theme captured their
‘impossible position and location’ (Dorit) at times of end-of-life decisions
and 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 in
Hebrew) was commonly used by informants, and was often one of their first
words: ‘What is my experience? I am fearful of those moments, fearful of
the 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 the
dying patient’s rights, means of empowerment or a sense of control over
one’s own dying process—all of which were found relevant in previous
research addressing this issue (Leichtentritt, 2002)—but rather reacted in
a personal– emotional way.
The social workers referred to fears from various perspectives, including
(i) fear that professional health care providers would lose hope; (ii) fear
that 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 difficult
ethical 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 responsibilities
and concerns, yet are not exclusively associated with the social work
profession: ‘...I feel responsible for the well-being of the patient and his
family, but also for the well-being of the nurses and physicians I work
with’ (Tamar).
The fear of professionals losing hope. One scary thought mentioned by
informants involved fear of their colleagues losing hope. Discussing with
patients their right to withhold or withdraw from life-sustaining treatment
was 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 in
the sense of ‘not giving up’ (Sara), ‘something can still be done in the
effort to assist the dying patient’ (Tamar). The participants’ rationale was
grounded in the illusive assumption that medical science always has some-
thing to offer and that the physician is never helpless in the ongoing battle
against 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 often
referred 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 you
have 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 the
patients ...this is what allows us to feel worthwhile, meaningful, useful,
helpful .... It is also important for the patients; they know that their care
providers are doing something to assist them (Nora).
Informants rarely referred to providing patients with the hope of dying
peacefully, in dignity or painlessly—in contradistinction to the hope
voiced by dying patients in the terminal stage of their life (Leichtentritt
and Rettig, 2000;Eliott and Olver, 2009).
Fear of the patient’s losing hope. The importance of maintaining hope, in
the specific sense of continued use of advanced technology, was further
evident when participants referred to the consequences of discussing the
dying patients’ rights from the perspective of the patient’s well-being—
the patient’s losing hope. Social workers viewed their role in caring for a
dying patient to include encouraging his/her to maintain hope, and they
perceived the discussion of end-of-life options and the provision of hope
as conflicting obligations (Eliott and Olver, 2009). The notion of offering
patients the opportunity to contemplate the possibility of halting medical
treatment was seen as taking away their hope:
We must do everything to maintain the patient’s wishes to improve .... This
keeps him going; this gives him hope (Michal).
You do not take away a dying person’s hope .... That’s what gives
meaning to his life! (Orna).
Hope is constituted as a valuable possession of the patient and as affected
by interpersonal interactions. In keeping with recent literature, participants
discussed 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 main
goals in social work interventions, such as empowerment and protection
of rights (Karoll, 2010).
The efforts that were put into maintaining hope did not allow participants
to 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 them
feel better, not worse ... we mainly try to find spots in their life that provide
them with hope, something to hold onto, to look forward to (Michal).
Fear of discussing end-of-life preferences. Informants recognised the
impact of their own fears and concerns on their willingness to openly
discuss end-of-life issues. In Israel, the subjects of death (Cohen, 2010)
and dying (Leichtentritt et al., 1999) are still perceived as taboo and are
rarely addressed or discussed openly among family members:
It is scary to think about death in such a concrete way, talk about it in an
open and honest conversation with a dying person .... I do that only if
the patient initiates the discussion .... I can’t think of any conversations I
have had with dying patients on the issue ...maybe just a word here or
there .... I admit I don’t bring the issue into the room .... When the issue
is already there [in the room], I tend to open the window [laugh] and let
it out (Rebecca).
Participants refrained from discussing end-of-life issues because of their
need for self-protection and the protection of others. Their preference not
to 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 patients
or family members, I provide them with relevant information, I describe
to them what the law is about and how they can implement it (Tamar).
Several of the participants distinguish between the patient and his/her
family. They recognise their own fears as paralysing them from talking
about dying with patients, but perceive themselves as strong enough to
address the issue with family members:
If family members want to think out loud about the various options and the
best way to care for the patient ...obviously I will assist them and be here
for them .... I know it is paradoxical, but I’m sorry, I can’t see myself being
involved in such a discussion with the dying patient ... . It’s too risky ... at
least I know my limits (Sara).
This form of action diminishes the dying patient’s ability to reach
end-of-life decisions, as s/he lacks accurate information.
Fear of the patients’ reaching uninformed decisions. Involving patients in
end-of-life decisions requires health care providers to offer them accurate
and relevant information concerning their illness, its symptoms and likely
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prognosis. These requirements often do not apply in cases of dying patients
in Israel:
I do not lie to patients, but it is not like telling them the whole truth and its
full meaning to their face .... You give bits and pieces based on the patient’s
questions and desire for knowledge (Nora).
Although this could be interpreted as suggesting that Israeli health care
social 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 with
their patients suggests that what guides their communication with them is
not the ‘patient’s subjective experience, preferences and variations’ (Zilber-
fein and Hurwitz, 2004, p. 305), but rather the health care professional’s
personal belief system, emotional reactions and clinical opinion. Such
partial communication, suggesting a paternalistic approach, raises the fear
of patients reaching uninformed end-of-life decisions:
In order to allow people to truly decide, they must know exactly what is
going on and what the future holds ... . Unfortunately they are too often
unaware .... [There are] many reasons we all ‘play this game’ ...because
it is very difficult to tell ...because it is easier this way, it is often easier
for the family .... I know it is ethically questionable, but reality is much
more complicated than ethical guidelines (Vered).
The provision of no information or partial information to patients has
received heavy criticism from various social forces, such as civil rights
movements, feminists and the autonomy movement in medicine, all of
which strongly oppose the idea of medical paternalism (Parker-Oliver,
2002).
Fears for the family. Social workers were concerned with the well-being
of the dying patient’s family members. This concern corresponds with the
role description of social workers in a health setting (Taylor-Brown et al.,
2004). One of the social worker’s goals when intervening with families
who experience anticipatory mourning is to minimise guilt feelings and
reduce the sense of blame (Rando, 2000). In the social workers’ view,
both are likely to be increased if treatments are withdrawn or withheld
from the dying patient:
The basic stance of the family is one of guilt ... . There is always a sense they
could have done more, that they have not done enough ...they could have
done better. This initial position does not allow them to reach any decision
other than the one that life ought to be prolonged .... If this is the case, why
raise the issue? Why cause more difficulties when we already know they
cannot act contrary to the basic family standpoint? .... They are limited
by social expectations and norms (Michal).
The concern for family members was especially evident in scenarios
involving a conflict of interest between them and the dying patient. In
such 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 family
members: ‘They are the ones who will have to continue living with the
decision’ (Noa). Thus, participants assumed the role of protecting family
members from reaching difficult decisions.
The current theme has delineated the various fears health care social
workers raised while discussing their experiences at times of end-of-life
decisions. Overall, they acknowledged and supported the patient’s right
to 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 and
empowerment. Even though social work is a value-based profession
(Reamer, 1990), at times of end-of-life decisions, individuals’ emotional
reactions seem to dominate the professional representatives’ actions
more so than values and ethical duties.
Between a rock and a hard place
Participants perceived themselves in a ‘catch 22 situation’ (Eti) when
end-of-life decisions are explicitly or implicitly discussed. They referred
to themselves as ‘being torn’ (Noa), ‘being pulled in different directions
by two powerful and opposing forces’ (Hagit). ‘I feel as if I am between a
rock and a hard place ...[and] have very little freedom of choice’ (Sara).
This position of feeling torn is the result of a number of contradictory
demands. The first is the conflict between the participants’ perception of
their role description and what they believe the multidisciplinary team
expects of them (role expectation). The second involves a clash between
the participants’ personal views and the imperative to fulfil the patient’s
wishes. The third involves tension between the informants’ personal
views and how they evaluate the social work profession’s perspective on
end-of-life issues. A fourth conflict entails differences between organis-
ational perspectives and the requirements of the new law. Finally, there is
the tension between the patient’s individual rights and the required pro-
cedures to implement these rights.
Role description versus role expectations. Participants argued they should
not be involved in end-of-life decisions, claiming it is not within the scope of
their role description. Interestingly, social workers perceived themselves as
responsible for the well-being of the dying patient and his/her family
members, 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 it
on the social worker’s doorstep. We as a profession are willing to take
everything 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 to
deal with the dying patient’s rights (Orna).
I do not think I have either the training or the knowledge to be involved in
these decisions .... Physicians at least ave relevant information to give to
patients (Zohar).
Participants felt torn between what they perceived as their role and what
they felt is required and expected of them by other members of the multi-
disciplinary team. They expressed a sense of pressure from team members
to be involved in the decision-making process:
They [physicians] expect me to reach the same understanding with family
members that they themselves hold concerning the appropriate care for
the patient (Dana).
Undoubtedly, everything that involves talking with patients or their
family members ends up on my desk ...they [the team] expect me to be
the one to deliver the message to the patient (Michal).
This description of the multidisciplinary team’s expectations corresponds
with 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 assigns
these roles and tasks to social workers, participants did not perceive this
multi-task description to correspond with their understanding of their
role 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 and
die in hospital settings and where O’Donnell’s (2004) description of the
social 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) as
preventing them from meeting the team members’ expectations for their
involvement. According to informants, the overload of hospital social
workers, 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 is
very 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 difficult
situations were described by informants who held somewhat unfavourable
attitudes towards patients’ involvement in end-of-life decisions: ‘I do not
think people at that time in their life should make the decision ....Itis
somewhat unfair to ask them to make the call’ (Hagit). In these cases,
the experience of ‘being torn’ was an especially powerful one, resulting in
descriptions such as ‘feeling powerless’ and ‘meaningless’:
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I had one patient who released himself from the hospital in order to stop all
treatment .... I spent hours trying to convince him otherwise .... Several
weeks later I heard he died ... I felt as if it were my fault ... . There was a
strong sense of powerlessness (Shani).
If, for example, the patient decides he wishes to stop treatment, even if I
believe he’s making the wrong decision, there’s nothing I can do ... . It’s
very hard to watch, knowing I am powerless in the situation (Einat).
This internal conflict was very painful for these informants. This conflict
was not with the client, but rather within the social worker, who is expected
to help resolve end-of-life dilemmas within the client’s frame of reference
or worldview, even though that differs from his/her own viewpoint.
Personal versus professional view. Most of the participants described a
clash between their personal view of end-of-life decisions and the view
they 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 to
help him reach a different decision .... The profession has not changed ....
You can’t expect differently from a profession that is obligated to follow
society’s norms and values (Vered).
The Israeli social work profession—as an academic discipline, as well as a
working organisation—has not changed or adopted the new law and regu-
lations concerning the dying patient’s rights. The emphasis the profession
puts on life, in contradistinction to quality of life, leaves its representatives
in a difficult position with respect to end-of-life issues.
Organisational perspective versus the new law. A parallel situation was
described when participants compared the demands of the new law to hos-
pital norms. In the social workers’ perceptions, no change has occurred in
organisational norms since the new law was introduced. Although new
practices have been approved, no practical changes have occurred in the
participants’ working environment. This observation receives empirical
support 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 in
order for such a law to truly be implemented (Tamar).
When everyone around is making every effort to prolong life, raising
the issue of patients’ rights, which are basically about ending life, is an
oxymoron (Bilha).
Informants talked about the preparations they underwent after the law
was approved by Parliament and prior to its implementation (a twelve-
month period). They described lectures and courses they attended, yet
recognised 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-life
decisions involve:
So, there is a new law .. . . I can tell you everything that is written there. We
took 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 effortto prepare health care teams for the change ....
They did a reasonable job, although in my view much more attention should
have been given to the individual in this very difficult situation—his feelings,
his values (Orna).
Previous studies have demonstrated the importance of organisational
values and norms in predicting the individual’s behaviour and working
pattern (Peleg, 2004). Because Israeli hospitals have not yet made the
expected changes in the organisational atmosphere, values and priorities,
individuals’ rights at times of end of life are not being adequately
implemented (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. Participants
described the long, confusing procedures and documentation required to
implement wishes to withhold or withdraw treatment. At the same time,
they talked of the dying patient’s wish to implement the decision shortly
after reaching it:
You feel like an idiot providing family members with a 20-page booklet that
they have to read through in order to implement their request (Bilha).
It is an unrealistic procedure for a dying person to go through .... In order
for this law to start being implemented, the procedure must be much, much
simpler (Nora).
These long and confusing procedures were described as an additional
factor reinforcing perceptions of being ‘stuck’. Participants felt caught
between the patient’s wishes and the protections built into the law with
the 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 workers
find 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 hospital
settings (Kranzler and Ayalon, 2009).
Comprehensive understanding
According to the narratives, inefficiency is the Israeli health care social
worker’s experience at times of end-of-life decisions. Inefficiency is
defined as lacking the ability or skill to perform effectively (incompetence),
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as well as not producing the intended result (ineffectiveness) (Cambridge
Dictionary of Psychology, 2009). Both of these aspects—incompetence
and ineffectiveness—are relevant in the informants’ experience. While
informants did not explicitly refer to the concept of ‘inefficiency’, their
statements reflect a sense of being unproductive and incompetent at
times 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-life
decisions.
Refusal to give up hope
Caring for patients who are terminally ill often requires one to maintain a
difficult balance between (i) providing the best care, or most aggressive care
possible, knowing that the chance of recovery is extremely unlikely, and (ii)
accepting the inevitability of death. This description does not apply to the
research participants’ experience, as they continued to hold onto the
belief 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-layered
perspective, claiming that any attempt to understand private experiences,
including Israeli social workers’ experiences at times of end of life, must
take 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 most
profound one being the memory of the Holocaust. There is a common view
that, since the Nazis made decisions about whose life was worthwhile, it is
wrong for anyone to put a value on human life (Leichtentritt et al., 1999).
Moreover, the Holocaust led to the conception of Israel as a metaphor
for rebirth, for regenerating the Jewish people (Sturman, 2003). There is
thus a reluctance to give up on any patient, no matter how hopeless.
The narrow societal definition of hope as surviving and prolonging life is
mirrored 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 of
end-of-life decisions.
Working with a multidisciplinary team
Participants felt pressured from their team members at times of end-of-life
decisions. 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 many
reasons, including the idiosyncrasies of socialisation into the profession, dis-
tinctions in roles and differences in moral reasoning perspectives (Baumann
et al., 1998). Nonetheless, unlike the findings in the current research, indi-
viduals caring for dying people in hospice programmes reported work in
a multidisciplinary team as a collaborative and positive experience
(Corless and Nicholas, 2004). What might explain the difference in the
experience is the term each organisation (hospice versus hospital) uses to
describe the team (interdisciplinary versus multidisciplinary).
Multidisciplinary is ‘linked to parallel play, whereas interdisciplinary
connotes 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). The
team head is decided by the needs and wishes of the care recipient, and all
members work collaboratively to meet patient and family concerns and
needs. This is a far cry from the experience described in this study, where
team work was mainly multidisciplinary.
Implications
The current findings have far-reaching implications for both social work
education and health care social work practice. The worrisome comprehen-
sive understanding concerning participants’ experience of inefficiency at
times of end of life demonstrates a lack of knowledge and skills among
Israeli health care social workers. Examination of social work curriculums
in 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 to
the challenges of working in multidisciplinary teams. Attention needs to be
paid in the social work curriculum to the universal unavoidable experience
of death and dying, as well as to skills and strategies for effective practice in
a multidisciplinary team in order to address the multiplicity of problems
among dying people (Damron-Rodriguez and Saltz, 2002).
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Furthermore, social workers who are involved in end-of-life care must
examine their own values and fears concerning end-of-life issues. Such
insight is important to assure that the starting point for services is defined
by 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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