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Settimio Monteverde
Key words: bone marrow transplant; ethical decision making; palliative care; time
Departing from a contemporary novel about a boy who is going to die from leukaemia,
this article shows how the dimension of time can be seen as a morally relevant category
that bridges both ‘dramatic’ issues, which constitute the dominant focus of bioethical
deci sion making, and ‘undramatic’ issues, which characterize the lived experience of
patients, relatives and health care workers. The moral task of comparing the various time
dimensions of a given situation is explained as an act of ‘synchronizing’ the clocks. Ethical
sensitivity and competence are presented as core skills that allow a continuity of care in
situations where dramatic issues seem to be resolved, but undramatic ones are still not
addressed. A nine-step model of shared decision making is proposed as an approach to
identifying critical junctures within an illness trajectory and synchronizing the clocks of
the involved actors.
The dramatics of ethics
Ethical decision making is often seen as a dramatic process in which crucial steps have
to be taken that always become a matter of life and death. This is obvious when decisions
have to be made about withdrawing a brain-dead patient from a ventilator or
with holding antibiotics from a bedridden patient who suffers from advanced stage
Alzheimer’s disease. Although they are not the only ones that shape the moral work of
contemporary health care delivery, such ‘dramatic’ issues arise as dominant themes in
bioethical casuistry and research.1 They look for a balance between ethical, legal and
societal claims and the goals of medicine as an enterprise that serves humankind. In
order to prevent having to make dramatic decisions, a huge amount of policies, clinical
guidelines for ethical decision making and institutional forms of ethics consultation
have been formulated. They are either an expression of an existing consensus or, where
such a consensus cannot be assumed, of procedural pathways that foster a balanced
moral reasoning. Policies and guidelines concern topics such as physician-assisted
suicide, access to right-to-die organizations in health care institutions (in countries
where this is legally permitted or condoned2), declaration of death, distributive justice
in the allocation of scarce health care resources, participation of patients and healthy
Address for correspondence: Settimio Monteverde, Seminar am Bethesda, Fachstelle Ethik,
Gellertstrasse 144, Postfach 4020 Basel, Switzerland. Tel: +41 61 315 21 21;
E-mail: settimio.monteverde@bethesda.ch
Nursing Ethics 2009 16 (5) © The Author(s), 2009. 10.1177/0969733009106653
Reprints and permissions: http://www.sagepub.co.uk/journalsPermissions.nav
614 S Monteverde
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people in biomedical research, genetic counselling, etc.3–5 They are addressed to patients
by protecting their rights in various situations, but also to health care workers, acknowledging
the moral responsibility inherent in their daily work.
From a narrow point of view, ethics is seen as a way of thinking and acting exclusively
in dramatic settings. Testimonies from early nurse members of ethics committees
described that they felt excluded. They reported their first experiences on such committees
more as ‘survival’ than active participation in decisional processes.6 Findings
from qualitative and quantitative research show that nurses find themselves acting
not only in dramatic scenarios as described by classic bioethics, but also in silent or
apparently ‘undramatic’ scenarios that are only seldom the subject of explicit ethical
discourse.7 These are issues that are present in daily practice, shaping the moral work
of nurses and contributing to the ‘relational construction of identity’.8 If addressed,
they lead to significant patient and professional satisfaction; if not, there is growing
evidence that they lead to professional resignation and distress.9,10
Dramatic and undramatic issues: the double focus of nursing ethics
Nursing ethics had to focus on dramatic issues as a part of daily nursing practice
shared with other health care professionals. Yet, nursing highlighted particularly the
undramatic issues, such as the role of relationships and gender in decision-making
processes,11–13 the distribution of decisional power, and the mechanisms of empowerment
and disempowerment of patients, relatives and health care workers14 because
nursing is highly influenced by the caring approach as a normative theory of ethics.
There are many settings in today’s health care practice where dramatic issues seem
to be dominant, such as in bone marrow transplants, emergency rooms or intensive
care units. Nurses work in a context of prima facie settled priorities in order to preserve
patients’ lives or to recognize circumstances when death can be allowed. Distinguishing
dramatic from undramatic issues may be useful in moments when priorities have
to be set in the course of an illness trajectory in order to discuss treatment goals. This
distinction should not imply hidden presumptions about their relevance or irrelevance
from a moral point of view. Owing to proximity to the patient, the moral challenge
of nurses consists in special attention to undramatic issues concerning patients’ lived
experiences. Nurses recognize patients’ strategies of coping with life-threatening illnesses
and attempts to reconstruct and preserve personal identity, connecting past,
present and future in a perspective of continuity and growth.15 In such a perspective,
undramatic issues are deemed of equal moral relevance; that is, they are able to shape
the nurse–patient relationship and to guarantee a continuum of care that is independent
of therapeutic goals. I will consider a narrative approach to this question. Departing
from a novel about a boy who is going to die from leukaemia, I want to show how time
can be seen as a morally relevant category that bridges both dramatic and undramatic
or silent moral aspects of the work of nurses as well as doctors. This claim is based
on Storch and Kenny, who point out that: ‘Medicine and nursing share a common
history of bringing knowledge and skill to the care of sick people, but with distinct
cultures of professionalism’ (p. 483).16 A broader notion of knowledge and skills is
here presupposed, including a holistic view of medical, psychosocial and spiritual
topics. These are seldom objects of bioethical decision making and are therefore
deemed undramatic, but they shape patients’ experience and ability to cope with lifethreatening
illnesses. For health care workers, undramatic issues are highly relevant
because they open a hermeneutical window to patients’ experiences.
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Nursing Ethics 2009 16 (5)
Oscar and the importance of time
The French philosopher and novelist Eric-Emmanuel Schmitt depicts in his novel, Oscar
and the lady in pink, the journey of a 10-year-old boy who suffers from leukaemia.17 All
curative attempts have failed, including bone marrow transplants. He spends his last
days in the children’s hospital. He knows that he has to die, and so do the nurses,
doctor and his parents. Nevertheless, there is a conspiracy of silence hiding from Oscar
how things really are. Granny Rose, an old lady and a member of the volunteers known
as the ‘pink ladies’, visits him every day of his remaining 10 days of life. Two destinies
now intertwine, and they become friends, but they become also teacher and student
to each other. ‘Granny Rose, I feel like no one’s telling me I’m going to die.’ ‘Why
would you want people to tell you, Oscar, if you already know?’ (p. 9). Granny Rose
advises Oscar to keep a diary and to write to God about every day of his remaining life.
‘Starting today, you’ll treat each day as if it counted for 10 years.’ ’So, in 12 days’ time,
I’ll be 130!’ ‘Yes, can you imagine it?’ ‘Granny Rose kissed me ... then she left’ (p. 27).
Oscar follows the advice, and so, in his brief and restricted existence, he lives the peaks
and troughs of life. He falls in love with Peggy Blue, a little girl who is scheduled for
cardiac surgery. He initiates one relationship after another and tears down the walls
of silence between doctors, nurses, parents and other children. The last chapter of his
diary is the shortest: ‘Dear God, a hundred and ten. That’s old. I think I’m starting to
die’ (p. 86). It is Granny Rose who completes the last pages of the booklet: ‘Dear God,
the little boy has died. I will always be a lady in pink but I won’t be Granny Rose any
more. I was only that to him (p. 87).’ Time is relative; the intensity of what we live
has nothing to do with the measurable chronological extension, for example, minutes,
days and years. Physics and philosophy share the same findings, as well as theology,
which focus from temporality to eternity. We live at the same time, but we also live
in different times. When there are no more stem cell transplants to offer to Oscar, the
language of treatment grows silent, the finitude of life becomes dramatically obvious
and the ambivalence of always being busy when entering the sickroom disappears. At
first, from the perspective of nurses and doctors, everything important has been said,
there are no more dramatic decisions to be made, only to wait and let nature take its
course. Just then, Oscar begins to live: he expresses in poetic terms the elements that are
considered essential to recognize meaning in life, which becomes daily more important.
As fears rose and hopes disappeared, Oscar experienced the gifts of friendship and
love, the preoccupations of daily life, even caring for an adopted old teddy bear.
The times we live and the clocks we carry
When no more dramatic decisions had to be taken and everything important seemed to
have been said, communication stopped, but Oscar’s growth continued. Although he
struggled with the decay of his body, in his last 10 days he is experiencing life, and not
just waiting for death. The dichotomy between the two perspectives of ‘experiencing
life’ and ‘waiting for death’ is the dominant theme in which the relationships of Oscar
with his parents, the ward nurses and the doctors are depicted. From a moral point
of view, one consequence of this dichotomy is that his needs are neither understood
nor met by health care workers or relatives, with the exception of Granny Rose. If the
metaphor that we live at different times is continued, it is possible to say that we also
carry with us different clocks. These clocks tell us what time it is: they orientate us
and tell us what we have to do in specific circumstances. These clocks are made up
616 S Monteverde
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of our values, created by education, scientific knowledge, professional virtues, and
cultural and religious beliefs. For Oscar’s doctors and nurses, his hourglass has nearly
run through, but he himself had just begun to experience life; he even spent one night
in Peggy Blue’s room and was not impressed when the ward nurse shouted and pulled
him out the next morning.
Ethical sensitivity and competence
A first ethical stance may lead us to realize that we live in various times. Not only do we
each carry different clocks, but our own clocks vary in different circumstances. Yet for
the quality of human relationships it is essential that we understand in which time the
people around us live. This is what is meant by ethical sensitivity.18 The professionals
around Oscar did not realize that, after the dramatic decision not to proceed to a further
bone marrow transplant, Oscar lived in just a few days the undramatic and silent highs
and lows of a whole lifetime, and experienced an abundance of impressions that prepared
him for his imminent death. Unfortunately, none among the doctors, nurses and
his parents was able to read the face of this clock; only Granny Rose did that.
A second stance, ethical competence, is the essence of ethical reflection because
it can lead to synchronizing the various clocks by recognizing the values that are at
stake and preparing any course of action.19 Sensitivity to what we hear and feel, but
also competence in facilitating good decisions, are the main ethical skills required for
daily medical and nursing practice. Both are necessary for understanding the ‘ethical
metastory’ that precedes any nursing action. Metastories can be shaped by dramatic
changes in a person’s life. They can also be shaped by silent changes or by convictions
and values that are not subject to change. They are ways of putting things together,
connecting experiences and constructing meaning. Nurses can be active parts in this
construction of meaning.
When someone, such as a patient, tells a nurse a story, however short, this nurse and
patient together create a bigger story, however limited. This metastory enables the listening,
reflection, challenge, and perhaps re-ordering of values and beliefs that are called for and
which will constitute the telos [goal]’ (pp. 65–66).20
Thus, both ethical sensitivity and ethical competence are rooted in the relationship
as the basis and vehicle for ethical action. Using the clock metaphor, ethical sensitivity
and competence are ways of recognizing what time patients’ and professionals’ clocks
show, and what steps can be taken to bring them closer together.
Reasons and values
Time is pivotal, not only for understanding which goals medicine should pursue following
an individual course of illness, but also for discovering how individuals cope
with illness and become able to develop new perspectives.21 The combination of both
dimensions is essential for understanding the context of such decision making, where
the dramatic issues are quickly solved, but the silent ones remain unanswered because
nobody feels able to speak for the persons who experience them. Oscar proved that
this applies also to a child. Through fiction, the author used his own experiences with
illness and the silence of an intimidated world faced with the life-threatening condition
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of a child. Patients, relatives, doctors, nurses and co-workers all lived in varying times
and argued in different ways.22
Reasons are never actor neutral; explanations and justifications are rooted in
personal, medical, scientific, professional and cultural values. They make evident why
we think and act as we do. There cannot be any ‘medical’ reasoning existing independently
from the reasoning of the patient or the nurse, because every ‘set’ of reasons
stands for a perspective on a certain situation. The task of ethics is to bring these perspectives
together, to initiate a dialogue by considering and comparing values and
ways of reasoning. In the case of Oscar, this did not happen. The clocks had not been
synchronized. It was the missing dialogue that caused him suffering, loneliness and
exclusion from the adult world, with the exception of Granny Rose, and not the fact
that he was dying from an incurable illness.
Synchronizing dramatic and undramatic issues
around life and death
For little Oscar, the dramatic situation in which different time notions collided is the
situation of relapse of the disease. The term ‘relapse’ indicates a falling back, stumbling,
not fighting any more against an enemy and even yielding to the enemy. This martial
metaphor is not free of a sense of guilt: the patient does not prove to be a good fighter
despite the efforts of professionals or of a stem cell donor. Generally, the challenge
of relapses in the haemato-oncological context is that it forces professionals to make
dramatic decisions, to look at the next step and to search for co-operation with patients.23
This decision has direct short-term consequences for the survival of patients. There is
no delay possible. In such situations, even the definition of palliative care formulated
by the Word Health Organization is not much help: ‘Palliative Care provides relief
from pain and other distressing symptoms, affirms life and regards dying as a normal
process, and intends neither to hasten nor to prolong death.’24
Is it possible that dying in the bone marrow transplant context can be seen as ‘normal’?
When are we hastening or prolonging dying? Does it not depend on the clock we work
by, which tells us whether it is ‘too early’ or ‘too late’, whether the patient is too well
to die or too sick to live? Objective data are based on clinical experience and research
and refined risk assessments exist. Yet, every answer to this question that is apparently
objective and scientifically sound is also a matter of values and therefore an expression
of silent issues that hide behind the dramatic ones. The underlying assumption of the
World Health Organization definition of palliative care is that there is a normal process
of dying that should not be hastened or prolonged. How does the notion of normality
of the process of dying fit into the bone marrow transplant context? Life and death are
mostly a matter of decisions to treat or not to treat. A large European study about endof-
life decisions in intensive care units showed that 70% of all intensive care unit deaths
were preceded by a decision either to discontinue life-sustaining therapy or to refrain
from commencing it at all.25 When the means for prolonging life are available, death
is primarily a matter of decisions and not of ‘natural processes’ that occur without
human interference. At first sight, this finding is neither good nor bad; it is simply the
consequence of the medicalization of life. It shows that behind every dramatic decision
about life and death are silent decisions about the value of life, the patient’s will, and
the search for meaning within suffering.
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lllich criticized medicalization as an act of incapacitating citizens.26 However, this
assertion fails to recognize that society itself creates myths, hopes and fears about
longevity and a life devoid of suffering. From a constructivist point of view, medicine
can be seen as an enterprise that strives to get close to the vision society has about its
goals. We should therefore be considered victims of medicalization only as far as we are
considered victims of our own visions. There are not victims on one side and authors
on the other; we are victims and authors at the same time. This closeness of hopes
and fears becomes particularly evident in the haemato-oncological context, where
Oscar’s journey takes place. It is not the dramatic fact that our life is medicalized and
depending on decisions about technology, drugs, treatment, etc. that is ethically controversial.
Rather it is the fact that we have the moral obligation to continue to care once
dramatic decisions have been taken. In Fry and Johnstone’s words, ‘the nurse promotes
an environment in which the human rights, values, customs and spiritual beliefs of
the individual, family and community are respected’ (p. 212). 27 Thus the nursing profession
has a genuine moral calling to consider not only dramatic issues concerning life
and death, but also silent issues and ‘soft’ skills such as communication and patient
empowerment, and also the organization of work. Only by considering both at the
same time can nurses achieve a balanced moral reasoning and a synchronization of the
clocks whose dials they read.28
Dramatic decisions and the continuity of care
For the assessment of dramatic decisions, as in Oscar’s case, to refrain from further
stem cell transplantation, there are classic, well-described pathways. When there is a
therapeutic rationale the patient can give informed consent and the required means
and skills are available, and stem cell therapy may be performed, but also the treatment
of opportunistic infections or blood transfusions. In dramatic situations, the main
questions are:29,30
• What is the goal we want to achieve? What is the benefit to the patient of this treatment?
What are the risks and burdens being imposed?
• What are the information level and will to live of the patient? What are his or her
values? Which interventions are needed to make him or her able to decide? What are
the benefits, risks and burdens of reaching these goals?
If a dramatic decision has been taken (e.g. that there is no rationale for continuing a
particular therapy) there remains a moral duty to offer the patient adequate symptom
control and care. In the bone marrow transplant context, there is no moral distinction
between a relapse-related or a transplant-related death, as in situations of graft-versushost-
disease or aplastic pneumonia. In such situations the cause of death is always the
illness itself.31 The British Medical Association32 and the Swiss Academy of Medical
Sciences33 repeatedly state that there is no moral obligation to begin or continue lifesustaining
therapy when the course of illness shows that further treatment is not
appropriate. Why then do nurses experience difficulties in such situations? Why can
communication within the team be so difficult? I do not think that there are ‘sentimental’
nurses on one hand and ‘rational’ doctors on the other. Rather, there are different
‘rationalities’, that is to say, different ways of giving good reasons and explanations for
personal opinions and behaviour.
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Within the framework of nursing action, nurses waver between two fundamental
intuitions that arise spontaneously.34 At best, they lead to reflection and dialogue; at
worst, they lead to moral distress. The first intuition is that, when caring for severely
ill people, we have first to give time to enhance a ‘natural course’ of life or to permit a
natural course of death. The second intuition is that we first have to alleviate present
suffering and avoid future suffering. This implies that we will not impose the burdens
of a risky treatment without a possible benefit. We may intervene and in our wish to
alleviate suffering we may also shorten life. Should we wait, giving nature a further
chance, or act to relieve suffering? The contradiction of these two moral obligations
char acterizes situations of relapse and the setting of priorities in deciding about the
next step. They explain the moral challenge of dramatic contexts of decision making.
Withdrawing a life-sustaining treatment often seems to be morally less controversial
because it is the course of the illness that seems to determine the logic of treatment. We
gave time; we did our best; we offered further treatment in situations of relapse. Now,
the condition of the patient is worsening and there is evidence that the illness trajectory
cannot be influenced by treatment and ‘nature’ seems to intervene. The underlying
assumption is that any further treatment will be futile. Considering a course of action as
futile can be scientifically or statistically proved and we may also reach a consensus
about it. This always includes a value judgement of a given situation, that is, the remaining
quality of a given life.35
Withholding life-sustaining treatment is the opposite of giving time: we are not
willing to grant further time to achieve an unreachable goal. By limiting curative treatment,
we set a different goal: we want to give a human response to suffering because
the underlying assumption is that every further treatment will be futile.36 A value
judgement of a given situation or life is made. The price of following this intuition
is the feeling that we cause death and provoke an unnatural or perhaps premature
ending of an individual’s life.
In 1969, Kübler-Ross formulated a vision of a patient-centred approach in palliative
care, with a network of different professional skills in which the words ‘death’ and
‘dying’ were not marginalized.37 The transition between cure and palliation was not
yet part of the self-understanding of modern medicine, although it was part of its daily
practice and experience. The presence of suffering, death and dying could never be
eliminated, and medicine never aimed to do so. It was only the concept of palliative
care that opened eyes to more research and development of knowledge and skills in
this field. A continuation was suggested between cure and care, which was a dramatic
change in the logic of treatment for patients who were like homeless people when
curative options stopped.38 In these classic situations (many of them oncological), the
underlying assumption is that there is a transition, and that there is time to go from
cure to palliation.39
Transitions in the goals of care
In the bone marrow transplant setting and situations of relapse, however, this linearity
does not exist. Life and death are matters of decisions from the beginning of the
first symptoms of leukaemia. We always give time or take time away. There is no
transition, as palliative care suggests; but there are many transitions from curative to
palliative. We often do not know under which banner we carry out a treatment. Some
of the transitions are invisible, small and silent. There may be curative islands in an
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apparently palliative context. An initial good response to stem cell therapy and the successful
treatment of stomatitis are important examples, as are the treatments of pain,
anxiety and psychological suffering. Disagreements between doctors and nurses about
the goals of the therapy they want to offer to the patient is often the first source of
conflict among team members. Such conflicts arise when the patient’s perspective is
not included.40
Continuous relationship awareness
As Oscar’s story shows, after the verdict that nothing more can be done for him,
clocks begin to run separately, communication stops, and the embarrassment of the
parents, doctors and nurses grows. They do not realize what Oscar is experiencing in
his remaining days and the intensity of what he is living with Granny Rose. What are
the reasons for this failure? From a medical point of view, there seems not to be an
indication for further treatment, but the silent issues behind these dramatic issues
are all ignored. Oscar’s capability to cope with this situation is neither strengthened
nor are his resources acknowledged. Therefore it is not surprising that not a single
positive professional relationship experience with doctors or nurses is mentioned.
Although the narrative context is fictional, it is clear that even when dramatic decisions
have to be taken, silent issues are still of moral relevance and part of professionals’
commitment in order to guarantee a continuum of care. ‘Data in the literature have
consistently highlighted major deficiencies, particularly the risk of ‘‘abandonment of
the patient’’, where DNR [do not resuscitate] orders are given in order to limit the use of
cardiopulmonary resuscitation’ (p. 351).41 A continuum of care is not only related to the
physical aspect of care, but to all aspects that shape the nurse–patient relationship.11
Gilligan coined the term ‘relationship awareness’ in the context of adolescent
girls.42,43 Translating this into a context of professional ethics, it is possible to describe
the therapeutic commitment of professionals to remain aware of the silent issues even
after dramatic issues have disappeared. Patients feel abandoned when there is no
relationship awareness.44 No matter how dramatic or silent decisional contexts are,
nurses have the moral obligation to guarantee and/or promote a continuum of care in
which the needs of patients are at least recognized, responded to and, if possible, met.
By synchronizing the clocks in this way, nursing ethics discovers its original endeavour
to point not only to ‘strong themes’ like illness, disease and care options, but also to
‘soft themes’ such as the effects of illness, disease and treatment decisions on the life
of individuals.
Illness trajectories, critical junctures and
reassessment
Every illness trajectory has critical junctures or newly occurring circumstances in
which a decision about treatment and care has to be made. Usually, critical junctures
are perceived and described in medical terms. Relapse is a typical critical juncture in
a bone marrow transplant setting, because it forces a reassessment of treatment; but
so also are opportunistic infections, severe bleeding, or depression. Critical junctures
are not only medical occurrences; they range from dramatic situations of relapse to undramatic
but burdensome social, psychological and spiritual issues. The first and most
far-reaching critical juncture is the disclosure of the diagnosis itself and the experience
of a life-threatening illness. The sensitivity to critical junctures considers every medical
assessment as part of an ethical assessment.
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Nursing Ethics 2009 16 (5)
Owing to their proximity to the patient, nurses experience at first hand the variety
of critical junctures when haematology patients are struggling with the implications
and complications of their illness. Discussing values, rights and duties that are at stake
is basic to their work. If this is not possible or not desired, moral distress will be the
consequence. This is also the case for physicians, social workers, psychologists and
chaplains.
Critical junctures: steps for shared decision making
Only models of shared decision making can integrate the particular views described.45
Such models centre around the patient’s perspective and regard respect for patient
autonomy as central. When the degree of patient autonomy cannot be assessed or is not
sufficient to meet the prerequisites of liberty and agency, ways of surrogate decision
making have to be sought. Shared decision making contextualizes medical facts with
legal, social, biographical and spiritual values by involving all the relevant actors. In this
holistic approach all the different clocks by which professionals, patients and relatives
orientate themselves can be recognized and synchronized. Models of shared decision
making include round-table or bedside meetings with all the actors involved, but also
ethics committees or case discussions among experts. The role of nurses is essential in
such contexts. Owing to their proximity to patients, relatives and doctors, they contribute
to the visibility of the different clocks of all the involved actors, expressing their values
in dialogue. When values become visible, a consensus or synchronization of different
times may succeed. In an acute setting such as haematology, this synchronization may
consist of the following steps:
1) Identify critical junctures with all the involved actors and assess their importance
for them. Are they of the same importance for the patient? If so, have we set the
right priorities? If not, what consensus can we reach and where do values differ? In
Oscar’s situation, this first step would have broken the dichotomy of views between
health care workers and parents (‘He is dying’) and Oscar (‘I am living’).
2) Evaluate current treatments with all involved actors. What burden does the current
treatment impose on the patient and what benefits can be expected? For Oscar,
an evaluation of the current treatment would have implied a break in the wall of
silence, a discussion about adequate methods of palliation and a sensitivity to his
unmet needs.
3) Discuss possible alternatives with the patient and/or surrogates. Is he or she able to
give consent? Are advance directives available? What were his or her former wishes?
Are they specific enough and applicable to the current situation? What do we know
about the presumed will? Thinking about Oscar, this step would have signified that
Granny Rose and how she approaches Oscar is not part of a kind of conspiracy
against the established way of approaching patients, but an integrative and essential
part of it.
4) Make out the values that are at stake from the perspective of the patient, relatives, surrogates,
physicians, nurses and co-workers; what is the individual time dimen sion
for each of them? Where values underlying human behaviour are not expressed,
human needs cannot be met and the times of these clocks cannot be read. As a
consequence, in Oscar’s situation, fears, a sense of guilt and betrayed hopes are not
addressed by the parents or the health care workers, only by Oscar.
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5) Search for priorities that meet the needs and wishes of the patient and the values of
the involved actors, including morally relevant medical, legal and cultural facts;
look for a consensual decision and decide the next step. Reading the different hourglasses
and recognizing in which time the involved actors live would have permitted
a continuum of care from the start, planning meaningful interventions for Oscar,
including Granny Rose, and avoiding a sense of therapeutic abandonment.
6) Plan possible further critical junctures in the illness trajectory with the patient or the
surrogate. Describe first in a positive way all the levels of the continuum of care that
are applicable (measures that may be taken), and then measures that may be withdrawn
or withheld in case of futility. For Oscar, this step would have given him the
opportunity to discuss the process of dying and the possibilities of palliative care
and searching for meaning with the professionals.
7) Implement the chosen measures within a personalized plan of action.
8) Evaluate the measures taken with all the actors involved in order to prevent complications
and enable other patients in similar situations to have similar benefits. In such a
perspective, Oscar’s situation would not have been considered an isolated incident,
but a possible trajectory of illness that deserves an adequate human response, also
from a professional point of view.
9) Reassess the situation and return to step 1. Although part of professional competence
and standardized good practice, such a response always has to be related to an individual
person, following the course of the illness and the needs to cope with it.
When critical junctures remain unexpressed, ignored or hidden, nothing else can
be offered to patients but the logic of treatment or an embarrassing silence. In Oscar’s
words:
With Peggy Blue I read a lot of the Medical Dictionary. It’s her favourite book. She’s
fascinated by illnesses and she likes working out which ones she could have later. I looked
for the words that mattered to me: ‘Life’, ‘Death’, ‘Faith’ and ‘God’. You’re not going to
believe this but they weren’t in it! Mind you, at least that proves they’re not illnesses – life,
death, faith and you. Which is good news, really. Still, in a serious book like that there
should be answers to the most serious questions of all, shouldn’t there? (p. 76).17
If we do not have answers to the most serious questions, we should at least search
for them together. This attitude is a small virtue, but it has a large preventive effect on
professional satisfaction, quality of care, perseverance and professional attrition.46 As
well as that, this is the core of ethics.
The moral dimension of time
An important discovery of nursing ethics in the context of biomedical progress was that
dramatic and undramatic issues are of equal importance because both shape human
relationships, the rights and duties of patients, health care workers, institutions and
society. In mapping the wider context of nursing ethics, Thompson et al. distinguish
between ‘micro, macho, meso and macro issues’ in the ethics of health care (p. 127).29
The micro level is the only one where the relationship with the patient is explicitly
mentioned. The levels do not exist independently of each other, but fit closely together,
like a Russian doll, with the nurse–patient relationship as the core dimension. As the
authors note, ‘observation and research in nursing has brought to light the fact that the
The importance of time in ethical decision making 623
Nursing Ethics 2009 16 (5)
issues perceived as important by practitioners and patients may be quite different from
those perceived as important by the public’ (p. 127).29 Following Oscar’s experience, in
a pluralistic, intercultural and fast-changing world there is seldom unanimity about
which questions are the most serious. In a health care context that is continuously
reflecting about its aims and goals, serious questions will hardly decrease. They may
be dramatic or undramatic, such as demographic changes and the growing need for
long-term care, the availability of benefits of biomedical progress in a globalized world,
justice in the distribution of the burdens of human research etc. Ethical sensitivity is the
core skill to answer this question, making nurses and other health care workers able
to synchronize the clocks and to recognize the moral dimension of time in their daily
encounter with patients.
Conflict of interest statement
The author declares that there is no conflict of interest
References
1 Schöne-Seifert B. Grundlagen der Medizinethik. (The basics of medical ethics.) Stuttgart: Kröner,
2007 (in German).
2 Hurst SA, Mauron A. Assisted suicide and euthanasia in Switzerland: allowing a role for nonphysicians.
BMJ 2003; 326: 271–73.
3 Gastmans C. Sorge für ein menschenwürdiges Lebensende in katholischen Pflegeeinrichtungen
in Flandern (Belgien). (Concern for dignity in end of life care in Catholic guidelines in Flanders
(Belgium).) Ethik Med 2005; 17: 284–97 (in German).
4 Neill SJ. Research with children: a critical review of the guidelines. J Child Health Care 2005; 9:
46–58.
5 Dubler NN. Conflict and consensus at the end of life. In: Jennings B, Kaebnick GE, Murray TH
eds. Improving end of life care: why has it been so difficult? Hastings Cent Rep 2005; (special
report): S19–S25.
6 Phillips B. Survival on the ethics committee: A nurse’s guide. Community Ethics 1997; 4: 9–11
7 Wysoker A. Psychiatric-mental health nurses and the aftermath of Hurricane Katrina: fulfilling
the ethical responsibilities. J Am Psychiatr Nurs Assoc 2006; 11: 364–65.
8 Hartrick Doane GA. Am I still ethical? The socially-mediated process of nurses’ moral identity.
Nurs Ethics 2002; 9: 623–35.
9 Zane RA, Rager Zuzelo P. ‘Never again’ stories of nurses: dilemmas in nursing practice. Qual
Health Res 2006; 16; 1191–206.
10 Milton CL, Mitchell GJ. Ethical issues. Nurs Sci Q 2001; 14: 109–14.
11 Armstrong AE. Nursing ethics: a virtue-based approach. Basingstoke: Palgrave Macmillan, 2007
12 Cedar SH. Stem cell and related therapies: nurses and midwives representing all parties. Nurs
Ethics 2006; 13: 292–303.
13 Liaschenko J, Peter E. Feminist ethics: a way of doing ethics. In: Davis AJ, Tschudin V, de Raeve L
eds. Essentials of teaching and learning in nursing ethics. Edinburgh: Churchill Livingstone, 2006:
181–90.
14 Martin GW. Communication breakdown or ideal speech situation: the problem of nurse
advocacy. Nurs Ethics 1998; 5: 147–57.
15 Erikson EH. Identity and the life cycle. New York: International Universities Press, 1959.
16 Storch JL, Kenny N. Shared moral work of nurses and physicians. Nurs Ethics 2007; 14: 478–91.
17 Schmitt EE. Oscar and the lady in pink. (Hunter A trans.). London: Atlantic Books, 2005. (First
published in French: Oscar et la dame en rose. Stuttgart: Philipp Reclam, 2004.)
18 Sayers KL, de Vries K. A concept development of ‘being sensitive’ in nursing. Nurs Ethics 2008;
15: 289–303.
19 Eriksson S, Helgesson G, Höglund AT. Being, doing, and knowing: developing ethical
competence in health care. J Acad Ethics 2007; 5: 207–16.
624 S Monteverde
Nursing Ethics 2009 16 (5)
20 Tschudin V. Narrative ethics. In: Tschudin V ed. Approaches to ethics: nursing beyond boundaries.
Edinburgh: Butterworth Heinemann, 2003: 61–72.
21 Erikson EH. Identity and the life cycle. New York: Norton, 1980.
22 van Kleffens T, van Leeuwen E. Physicians’ evaluations of patients’ decisions to refuse
oncological treatment. J Med Ethics 2005; 31: 131–36.
23 Robertson JA, Kahn JP, Wagner JE. Conception to obtain hematopoietic stem cells. In: Kuhse
H, Singer P eds. Bioethics. An anthology. Oxford: Blackwell, 2006: 150–57.
24 World Health Organization. WHO definition of palliative care. 2009. Retrieved 30 March, 2009,
from: http://www.who.int/cancer/palliative/definition/en/print.html
25 Sprung CL, Cohen SL, Sjökvist P, for the Ethicus Study Group et al. End of life practices in
European intensive care units. JAMA 2003; 290: 790–97.
26 Illich I. Limits to medicine: medical nemesis, the expropriation of health. London: Marion Boyars,
2000.
27 Fry S, Johnstone MJ. Ethics in nursing practice: a guide to ethical decision-making. Oxford: Blackwell,
2008.
28 MacRae SK, Fox E, Slowther A. Clinical ethics and systems thinking. In: Singer PA, Viens AM
eds. The Cambridge textbook of bioethics. Cambridge: Cambridge University Press, 2008: 313–21.
29 Thompson IE, Melia KM, Boyd KM, Horsburgh D. Nursing ethics. Edinburgh: Churchill
Livingstone, 2006.
30 Vollmann J. Patientenselbstbestimmung und Selbstbestimmungsfähigkeit. Beiträge zur Klinischen
Ethik. (Patient autonomy and decisional capacity.) Stuttgart: Kohlhammer, 2008 (in German).
31 Roy DL, MacDonald M. Ethical issues in palliative care. In: Doyle D, Hanks GW, MacDonald
N eds. Oxford textbook of palliative medicine. Oxford: Oxford University Press, 2001: 97–140.
32 British Medical Association. End-of-life decisions. Views of the BMA. London 2007. Retrieved 30
March, 2009, from: http://www.bma.org.uk/images/Endoflife_tcm41-146693.pdf
33 Schweizerische Akademie der Medizinischen Wissenschaften. (Swiss Academy of Medical
Sciences). Medizinisch-Ethische Richtlinien zu Grenzfragen der Intensivmedizin. (Medical ethical
guidelines concerning limits of intensive care.) Basel 1999. Retrieved 23 December, 2008, from:
www.samw.ch/content/d_Ethik_Richtlinien.php (in German).
34 Monteverde S. Ethik und Palliative Care: Das Gute als Handlungsorientierung. (Ethics and
palliative care; the good as guide for action.) In: Knipping C ed. Lehrbuch Palliative Care.
(Textbook on palliative care.) Bern: Huber, 2006: 520–35 (in German).
35 Draper H. Withdrawing and withholding life-sustaining therapy and euthanasia. In: Draper
H, Scott W, Allene N eds. Ethics in anaesthesia and intensive care. Edinburgh: Butterworth
Heinemann, 2003: 175–91.
36 Löfmark R, Nilstun T. Conditions and consequences of medical futility: from a literature
review to a clinical model. J Med Ethics 2002; 28: 115–19.
37 Kübler-Ross E. On death and dying. New York: Macmillan, 1969.
38 Kuczewski MG. Re-reading On death and dying: What Elisabeth Kübler-Ross can teach clinical
bioethics. Am J Bioethics 2004; 4: W18–W23
39 Saunders C. Into the valley of the shadow of death: a personal therapeutic journey. BMJ 1996;
313: 1599–601.
40 Willard C, Luker K. Challenges to end of life care in the acute hospital setting. Palliat Med 2006;
20: 611–15.
41 Vanpee D, Swine C. Scale of levels of care versus DNR orders. J Med Ethics 2004; 30: 351–52.
42 Gilligan C. In a different voice: psychological theory and women’s development. Cambridge, MA:
Harvard University Press, 1993.
43 Messer NG. Professional–patient relationships and informed consent. Postgrad Med J 2004; 80:
27–83.
44 Fallowfield LJ, Jenkins VA, Beveridge HA. Truth may hurt but deceit hurts more: communication
in palliative care. Palliat Med 2002; 16: 297–303.
45 McCaffery K, Irwig L, Bossuyt P. Patient decision aids to support clinical decision making:
evaluating the decision or the outcomes of the decision. Med Decis Making 2007; 27: 619–25.
46 Schluter J, Winch S, Holzhauser K, Henderson A. Nurses’ moral sensitivity and hospital ethical
climate: a literature review. Nurs Ethics 2008; 15: 304–21.
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