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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

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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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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

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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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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

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