Negotiated dying – how nurses shape withdrawal of treatment in hospital Critical Care Units

Negotiated dying – how nurses shape withdrawal of treatment in

hospital Critical Care Units

Tracy Long-Sutehall PhD

Faculty of Health Sciences, Building 67, University of Southampton,

Southampton SO17 1BJ, United Kingdom

Helen Willis

Wessex Renal and Transplant Service, Queen Alexandra Hospital, Southwick

Hill Road, Portsmouth PO6 3LY, United Kingdom

Rachel Palmer

Faculty of Health Sciences, Building 67, University of Southampton,

Southampton SO17 1BJ, United Kingdom

Debra Ugboma

Faculty of Health Sciences, Building 67, University of Southampton,

Southampton SO17 1BJ, United Kingdom

Julia Addington-Hall

Faculty of Health Sciences, University of Southampton, United Kingdom

Maureen Coombs

Cardiac Intensive Care Unit, Southampton University Hospitals Trust, Faculty

of Health Sciences, University of Southampton, United Kingdom

Please cite this paper as: Long-Sutehall T. Willis H. Ugboma D.

Palmer R. Addington-Hall J. Coombs M. (2011) Negotiated dying –

how nurses shape withdrawal of treatment in hospital Critical Care

units. International Journal of Nursing Studies, 48: 12, 2011, 1466-

1474. DOI:10.1016/j.ijnurstu.2011.06.003.

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Negotiated dying – how nurses shape withdrawal of treatment in hospital Critical Care Units

Abstract

Background - The process of withdrawal of treatment in Critical Care

environments has created ethical and moral dilemmas in relation to end of

life care in the UK and elsewhere. Common within this discourse is the

differing demands made on health professionals as they strive to provide

care for the dying patient and family members. Despite reports that

withdrawal of treatment is a source of tension between those nurses and

doctors involved in the process, the role of the nurse in facilitating

withdrawal of treatment has received relatively little attention.

Objectives – To illustrate how differing dying trajectories impact on

decision-making underpinning withdrawal of treatment processes, and

what nurses do to shape withdrawal of treatment.

Design - Qualitative methods of enquiry using clinical vignettes and applying

Charmaz’s grounded theory method.

Methods and settings - Single audio-recorded qualitative interviews with

thirteen critical care nurses from four Intensive Care specialities: Cardiac;

General; Neurological and Renal were carried out. Interviews were

facilitated by an end-of-life vignette developed with clinical collaborators.

Findings – Across critical care areas four key dying trajectories were

identified. These trajectories were shaped by contested boundaries

associated with delayed or stalled decision-making around how withdrawal

of treatment should proceed. Nurses provided end of life care (including

collaborative and action-oriented skills) to shape the dying trajectory of

patients so as to satisfy the wishes of the patient and family, and their own

professional aims.

Conclusions - Differing views as to when withdrawal of treatment should

commence and how it should be operationalised appeared to be

underpinned by the requirements of the role that health professionals fulfil,

with doctors focusing on making withdrawal of treatment decisions, and

nurse’s being tasked with operationalising the processes that constitute it.

Multidisciplinary teams need a ‘shared’ understanding of each other’s roles,

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Negotiated dying – how nurses shape withdrawal of treatment in hospital Critical Care Units responsibilities, aims, and motivations when planning and implementing

the dying trajectory of withdrawal of treatment.

Key words: Critical Care; Renal Care; dying trajectories; end of life care;

withdrawal of treatment; nursing role; grounded theory; qualitative

research.

What is already known about this topic?

• Improving end of life care is a key focus for health providers.

• Withdrawal of intensive care treatments, once there is no hope of

patient recovery, is now common in the UK, Europe and USA.

• Critical care nurses play a pivotal role in facilitating withdrawal of

treatment and yet they are often excluded from decision making.

What this paper adds?

• Delayed or stalled decision-making led to contested boundaries

around how withdrawal of treatment was operationalised

• Illustrates concepts that underpin nurses’ behaviours when they are

involved in the withdrawal of treatment as part of end of life care.

• Explains how nurses reshape withdrawal of treatment, which they

perceive as lacking the concept of care, into end of life care, which

articulates it.

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Negotiated dying – how nurses shape withdrawal of treatment in hospital Critical Care Units Introduction

Improving choice and quality in end of life care has been a focus of

United Kingdom health policy [Department of Health, 2006; 2008] with

the aim of improving the care of dying patients across all care settings.

This drive is similarly supported by professional bodies internationally,

including specific attention on end of life care in Critical Care

environments [Truog et al, 2008]. However, while health and

professional policy may stress the importance of improving end of life

care, there are specific and some may say unique challenges in

achieving this for those patients who die in Critical Care areas.

Critical Care describes hospital areas that support those who are

critically ill including general intensive care (GICU), cardiac (CICU),

neurological (NICU) and renal high care (RHC) units. Public perception is

that such care is delivered in a highly technical environment focussed on

curative interventions [Rubenfield et al, 2001]. However, according to

data from the Intensive Care National Audit Research Centre [ICNARC],

15,358 of the 89,682 [17.1%] admissions to 180 NHS adult, general

critical care units between 1 April 2008 and 31 March 2009, died

[ICNARC, 2010], and earlier work indicated that a sizable minority of

such patients [sic], 31.8% of 11,586, died due to the withdrawal of

treatment [Wunsch et al, 2005]. In fact withdrawal of intensive care

treatments, once there is no hope of patient recovery, is now a common

practice within ICUs in the UK [Bewley et al, 2000], Europe

[Benbenishty et al, 2006], and the USA [Coombs et al, 2010]. Despite

withdrawal of treatment being a common practice, studies report

tensions between nurses and medical colleagues regarding how

withdrawal of treatment should proceed.

Whilst there is general agreement that ICU nurses are more engaged in

direct contact with patients/families during end of life care than medical

colleagues [Puntillo and McAdam, 2006], nurses’ views regarding how

such care should proceed are often not elicited [Ho et al, 2005; Yaguchi

et al, 2005; Benbenishty et al, 2006]. Reluctance to involve nurses may

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Negotiated dying – how nurses shape withdrawal of treatment in hospital Critical Care Units be related to reports that nurses are less optimistic than medical staff

regarding patient outcomes [Kirchhoff et al, 2000; Festic et al, 2011] or

due to nurses being more likely to disagree on at least one of the daily

management decisions regarding end of life care [Frick et al, 2003].

Furthermore studies indicate that nurses feel ‘left out’ of the decision-

making process [Robichaux and Clark, 2006; Bach et al, 2009]. As

Pattison [2011] highlights, evidence is needed to “inform our

understanding of implementing withdrawal that minimises patients’

distress” [p: 114], especially as aspects of the decision-making process

remain poorly explored. This paper reports on a study that sought to

explore the experiences of nurses when facilitating withdrawal of

treatment and presents findings that: illustrate how differing dying

trajectories impact on team decision-making; explores the impact of

decision-making on the shape of the dying trajectory, and explains what

nurses do to shape the dying process during withdrawal of treatment.

Overview of study design

The 12 month study from which this paper is drawn [September 2008 –

September 2009] applied qualitative methods of enquiry, specifically a

modified grounded theory method [Charmaz, 2006] detailed later in the

data analysis section. This methodology was expected to elicit a broad

view of critical care nurses’ experiences of facilitating withdrawal of

treatment in their clinical area and to develop theory from the substantive

area.

Participants and recruitment process

Nurses from four clinical critical care units [ICU, CICU, NICU and RHC]

based on two sites in the south of England, and who were regularly

involved in withdrawal of treatment were invited to participate in the

study. Forty recruitment packs [10 each unit] containing a letter of

invitation, participant information sheet, reply slip and stamped

addressed envelope were addressed to the nurse by a clinical

collaborator and placed in the nurses’ work-based mail pigeon hole. A

second mail shot of 30 packs followed two weeks after the first [10

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Negotiated dying – how nurses shape withdrawal of treatment in hospital Critical Care Units packs each to CICU, ICU, NICU]. On receipt of a reply slip, the

researcher telephoned or emailed the participant [participant

preference] to arrange a mutually convenient time for the interview.

Those nurses who agreed to participate were invited to a face-to-face

interview.

Whilst the intended sample for this study was 16 nurses [rising to 20 if

needed for theoretical saturation]; 70 recruitment packs were sent out

with 18 nurses responding [26%]. Of these 18, four potential participants

were not recruited as changes in shift patterns meant that interviews had

to be cancelled and could not be rearranged in the study time line. One

potential participant withdrew from the study prior to interview due to

sickness. The final sample therefore comprised of 13 nurses [Table 1].

Recruitment initiatives achieved the desired sample for three out of the

four specialities. The median length of time spent in speciality was 4

years. Four participants were aged between 20 and 29 years, four

participants were aged between 30 and 39 years, four were between 40

and 49 years of age and one participant was aged between 59 and 65

years of age.

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Negotiated dying – how nurses shape withdrawal of treatment in hospital Critical Care Units Table 1. Participant demographic data.

Participant No.

Age/ Gender

Unit Time in ITU/HCU

Time in Nursing

Other ICU/HCU

experience 01 30-39/F GICU 12 years 15 years CICU

02 30-39/F GICU 12 years 16 years PICU, GICU

13 20-29/F GICU 4 years 4 years No

08 40-49/F GICU 2.5 years 5 years No

04 30-39/F RHC 14 years 14 years No

05 40-49/M RHC 11 years 19 years A & E, GICU

07 20-29/F RHC 3 years 7 years No

12 20-29/F RHC 2 years 5 years No

03 30-39/F CICU 7 years 7 years GICU

06 59-65/F CICU 5 years 40 years PICU, GICU

09 20-29/F CICU 4 years 8 years No

11 20-29/F CICU 2.5 years 5 years GICU

10 40-49/F NICU 4 years 4.5 years No

Data collection

Before the interview commenced, participants were offered the

opportunity to ask questions or clarify any concerns about the study.

Written consent for a face-to-face interview was gained before the

interview commenced. Ten interviews were carried out on the unit on

which the participant worked during the work shift of the participant. Two

interviews were carried out on the unit on which the participant worked

during the participant’s own time, and one interview was carried out at a

location convenient to the participant during the participant’s own time.

Interviews lasted for between 50 and 75 minutes

Interviews were facilitated by the use of clinical vignettes that were

developed in collaboration with professional colleagues [X,X,X,X] [Table

2]. This technique was chosen as it offered participants the opportunity to

discuss sensitive issues from a non-personal, and potentially less

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Negotiated dying – how nurses shape withdrawal of treatment in hospital Critical Care Units threatening perspective [Hughes, 1998]. The vignettes developed for this

study were about a specific clinical situation where treatment is to be

withdrawn. As is usual in grounded theory, two broad questions were

developed to commence interviews, with additional questions being added

to the sequence of interviewing as theoretical saturation was sought

[Table 2]. Interviews were ordered so that participants from the same

speciality were not interviewed back to back, thereby increasing the

opportunity to: i) carry out preliminary analysis of that interview, and ii)

incorporate ideas, and questions from that interview into the next.

Table 2. Clinical Vignettes

Intensive Care Area

Vignette Questions

General ICU A 36/76† year old patient was admitted to your unit after suffering a road traffic accident. *Following a significant period of treatment/interventions the patient has not responded as hoped, has suffered multiple setbacks, repeated infections, respiratory and cardiac instability. The clinical team view on-going treatment as futile. *After discussion with the patient’s family the decision has been made to withdraw treatment. *You are the nurse responsible for the care of the patient.

What are your clinical priorities when a decision has been made to withdraw treatment? How do you achieve these priorities? What are your personal priorities when a decision has been made to withdraw treatment? How do you achieve these priorities?

Cardiac ICU A 36/76 year old patient was admitted to your unit after suffering a cardiac arrest post cardiac surgery.

As above

Renal HC A 36/76 year old patient was admitted to your unit after suffering acute renal failure.

As above

Neuro ICU A 36/76 year old patient was admitted to your unit after suffering a sub-arachnoid haemorrhage.

As above

* All vignettes had this text to follow main diagnosis. † Participants received a vignette with a specific age indicated, this was to assess whether age was a factor in decision-making.

8

Negotiated dying – how nurses shape withdrawal of treatment in hospital Critical Care Units Data analysis

The analytical team comprised of one experienced researcher, a clinical

academic, two lecturer practitioners and an educationalist from one of the

clinical specialities.

Modification to the data analysis procedure usually applied in the

grounded theory method [GTM] was necessary to facilitate inclusion of all

team members in analysis. It is usual in GTM that data collection and

analysis are synchronous, but analysis was delayed until: i) co-analysts

had attended a refresher workshop in grounded theory analytic

techniques, and ii) transcripts were available from outside their speciality

[work area] as this was an agreed element of maintaining participant

confidentiality. The workshop on qualitative analytic techniques was

facilitated by an experienced grounded theory researcher (X), and the aim

of the workshop was to clarify the techniques to be used during analysis

so that a collaborative analysis of the data could be achieved. Data

analysis was carried out in three phases; the process of data analysis is

laid out in Table 3.

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Negotiated dying – how nurses shape withdrawal of treatment in hospital Critical Care Units Table 3. Approach to data analysis

Steps in analysis Questions guiding analysis Data source Process Round 1 What is the data a study of?

What is in the data, and what is happening in the action scene?

Two transcripts from the same clinical context [GICU] as none of the analysts worked in this area.

Reading the transcripts; Identifying similarities and differences; initial coding, initial grouping of codes, initial memos.

Round 2 What processes may be going on?

Two further transcripts, this time: different from those being analysed by their colleagues, and not from their speciality.

Focussed coding; expansion of coding list; ideas re properties and dimensions of initial categories, initial thoughts re process; free writing exercises and memo sorting.

Round 3 What explanations are we considering?

No further data therefore co-analysts were exposed to at least three data collection contexts and four renderings of experiences and views of participants

Theoretical coding: making active decisions as to where to look for more data to help clarify properties, expand, or condense categories. In this case a search of the extant literature, and member checks. The theoretical frameworks of Conflict rationalisation [Long et al, 2008] and the Negotiated order perspective [Strauss et al, 1963; Svensson, 1996; Allen, 1997] informed theoretical coding and memoing.

Outcomes Initial ideas from co-analysts;

initial coding list with definitions; memos outlining similarities and differences in the data [negative case analysis]; initial grouping of codes; questions for further analysis.

Agreement of master code list with definitions; explication of dimensions and properties of initial categories; co-analysts thoughts on developing concepts.

Agreement of key category as a basic social psychological process of shaping dying through negotiation. Four subcategories to the key category were developed: assessing, coordinating, facilitating, and operationalising,

All data was uploaded to a qualitative software package, Atlas Ti 5.2 to facilitate data storage and coding.

Rigour and trustworthiness

All fieldwork and coding notes made during data collection, co-analysts’

analysis, analytical memos [from co-analysts], analytic meeting notes,

and outcomes from discussions at the Advisory Board, formed an audit

trail implemented to ensure rigour and inform further data analysis carried

out by X. Member validation of the findings was checked via a

presentation to a group of nurses from across the CICU and GICU units.

Ethical approval

The study was approved by the Southampton and South West Hampshire

Research Ethics Committee [B].

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Negotiated dying – how nurses shape withdrawal of treatment in hospital Critical Care Units Findings

The findings and discussion will run in parallel as is usual in grounded

theory. This section will commence with an outline of the four dying

trajectories articulated by participants. As a key finding was that decision-

making was perceived by participants to be the most significant influence

on how withdrawal of treatment preceded, we will then go on to discuss

how these differing trajectories impacted on decision making.

Dying trajectories within ICU shape decision-making related to withdrawal of treatment. Dying trajectories are defined as ‘perceived courses of dying rather than

the actual courses’ [of dying] [Glaser and Strauss, 1968p: 6]. Courses of

dying are shaped by multiple factors, including: how and when dying is

defined, whether dying is acknowledged, whether it is expected, where it

takes place, who and what is involved. These perceived courses of dying

have ‘critical junctures’ [Glaser and Strauss, 1968:6] that ‘cue’ impending

death, but which are fundamentally shaped by individual perceptions and

expectations.

The most usual dying trajectories in CICU and GICU were either, i) an

acute admission following critical injury [illness] or planned surgical

operation followed by insidious deterioration with little or no response to

interventions over a relatively short time line [hours], or ii) a protracted

process of one step forward and one step back, with pauses when the

patient is not moving in either direction [days or weeks].

Neurological Intensive Care reflected the trajectories indicated above, but

also articulated a third trajectory whereby the patient has sustained a

brain injury leading to the diagnosis of brain stem death. In this situation

the family members would be approached about potential organ donation

and if they agreed, no further discussions regarding withdrawal of

treatment would take place.

A further trajectory, most common in RHC, was that of a chronic illness

trajectory [months, or more usually years of treatment] during which time

11

Negotiated dying – how nurses shape withdrawal of treatment in hospital Critical Care Units the patient had received [or carried out their own] dialysis, or may have

undergone a renal transplant that had failed necessitating a return to

dialysis. Patients on this trajectory gradually deteriorated leading to

withdrawal of treatment and death.

Findings indicated that these trajectories were shaped by contested

boundaries associated with delayed or stalled decision-making around how

withdrawal of treatment should proceed.

The process of decision-making

In the first trajectory despite, as participants commented 'everything

being thrown at the patient', and an agreement to withdraw being in place,

decision-making stalled due to the person who was empowered to make

the necessary decisions being unavailable.

“So I came on the night shift and was told that this chap

was probably going to pass away that night, but they were

almost kind of waiting for the patient to declare himself

rather than actually us ‘turn things off’. It got to the point

where, the consultant obviously is not around at night, the

registrars only following the consultant’s orders, and the

family must have been sat there for a few hours just

looking at this chap and you kind of go back to the doctor

and say, this is ridiculous the relatives have expressed that

they want us do what we need to do so that he can go

peacefully, and the doctor was kind of like well my hands

are tied. So in the end we had to phone the consultant at

home and then for them to remake the decision that we

could go ahead and turn things off and I just thought that

was utterly ridiculous for a patient who we knew was going

to die, he was clearly not going to make it, his family had

come in they had said their goodbyes and now they are

made to sit because they don’t want to go until he died. I

felt quite ashamed really of how it was being handled”

[10:10 (36:36)].

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Negotiated dying – how nurses shape withdrawal of treatment in hospital Critical Care Units

In situations such as this, where the family had been informed of the

futility of on-going treatment, were in agreement, and prepared for death

to occur, participants expressed their frustration at a lack of a plan.

“Thinking of somebody [patient] in particular, one

consultant would say, ‘we will give this another 48 hours

and then if there is no improvement we are going to have

to speak to the family about withdrawing’, and the next

consultant would come on and be, ‘right, now let’s start

these antibiotics, we give these 4/5 days to work’…and the

family just got so frustrated, understandably. So that

would be my biggest thing, that the consultants whether it

be alone or together, made a plan and stuck to it. I find

that hard because they [the family] are like, the doctor we

spoke to last week said this, and now this one is saying this,

which one is right” [8 1:19 (103:103)].

Delayed decision-making was a feature of the trajectory where the

patient remains in a relatively static position for days or weeks.

Participants perceived delays in agreeing a plan to withdraw to be

associated with the medical team leaving the patient ‘to declare

themselves’, and an unwillingness of doctor’s to acknowledge

approaching death.

“I know some of the doctors do have an issue with death

and it is almost like they are rolling it, for it to be rolled over

to the next consultant’s shift and for that doctor to make the

decision to take the tube out. I don’t know if that’s actually

what they think, but that is how it is perceived” [2:69

(219:219)].

A further delay to decision-making was when surgical and ICU teams

could not agree on moving forward to a plan for withdrawal. Surgical

teams working in all specialities were perceived by participants to be

13

Negotiated dying – how nurses shape withdrawal of treatment in hospital Critical Care Units much more reluctant to make decisions around withdrawal, as they were

‘seeking one more option’.

“I think there is quite often a difference of opinion when it

comes to withdrawal and particularly with the surgical

patients because obviously they are under the care of two

different people. It is usually broached by anaesthetists or

the nursing staff at the bedside kind of in discussion. It’s

very rare for the surgical team to admit there is absolutely

nothing more that can be done” [5:5 (26:26)].

In the dying trajectory, specific to RHC, the timing of decision-making was

delayed as medical colleagues were perceived to be unsure as to the next

step in withdrawal, not a reluctance to move forward to withdrawal.

“Sometimes we find that if that decision has been made,

and the patient has expressed that wish [of ceasing active

treatment], or clinically it has been decided that treatment

will [be withdrawn], it tends to kind of stagnate a little.

People tend to hang around and seem to be a bit unsure

what the next process should be. There can be a three or

four day period of well, are we doing anything for the

patient? The doctors don’t go to see them anymore and we

are still a bit like, but the DNR [do not resuscitate]

paperwork hasn’t been signed, so theoretically we would

still be having to resuscitate if the need arose. There is

confusion because the drug charts haven’t been crossed off,

and the nurses don’t know whether to give the medication

or do the observations it’s that bit that’s really fuzzy. From

the initial decision, the patient either deciding or the

doctors deciding the patient is no longer to have treatment,

there is always like a period of disclarity. People get a bit

confused as to what their roles are until something like the

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Negotiated dying – how nurses shape withdrawal of treatment in hospital Critical Care Units

Liverpool Care Pathway1 is implemented then that gives us

a bit of a clearer structure as to what to happen” [9:16

(60:60)].

Delayed or stalled decision-making significantly impact on nursing staff as

they attempt to protect the family and patient, from what Allan [1997]

has called ‘organisational turbulence’. Participants indicated that they

were seeking a plan from the medical team that was based on consensus

between and within teams, and adhered to by all. Nurses acknowledged

the need for flexibility, contingent upon the situation changing, but the

lack of a plan that indicated when family members would be approached

for a discussion regarding futility, and how the process of withdrawal

would proceed, contributed to the frustration of nurses identified during

analysis. Such frustration may be a product of working the ‘in-between’

spaces as Varacoe et al (2004) have reported that nurses experience

‘moral’ or ‘ethical’ distress as they strive to do what they see as ‘good’

[p:319], in the face of forces that constrain their actions and choices

(Varacoe et al, 2004). Participants in the study reported here did not

articulate their experiences in ethical terms, but did struggle both

professionally and personally when attempting to clarify decision-making

linked to the withdrawal of treatment.

So, in view of the impact of decision making, how do nurses shape

withdrawal of treatment? Figure 1 illustrates the process of negotiated

dying, which is the key category developed from analysis. The model

highlights what appears to be the ‘essential elements’ of how nurses work

to shape withdrawal of treatment. The subcategories of: assessing,

coordinating, facilitating, and operationalising integrate behaviours that

are aimed at overcoming disagreements, clarifying uncertainties and

challenging inaction in decision making. With the aim of reinforcing the

1 Liverpool Care pathway (LCP) for the dying patient. The LCP is a tool developed to incorporate best hospice practice into hospital and other care settings. It provides a framework for the care of patients in the last days or hours of life. Its main principles promote: good communication with the patient and family; anticipatory planning including meeting spiritual /psychosocial needs and symptom management; and care after death (www.mcpcil.org.uk/liverpool_care_patheway).

15

Negotiated dying – how nurses shape withdrawal of treatment in hospital Critical Care Units interconnectivity of these concepts, and for parsimony of text, examples

are presented in combination and are supported by exemplar quotes.

Figure 1. How nurses shape withdrawal of treatment.

Assessing patient need – facilitating and coordinating

communication with and between patients, family members and

medical colleagues

RHC participants indicated that meetings between doctors and family

members appeared to lay out the plan of action, not the detail of action.

Discussions about the ‘detail’ of what would happen were almost always

carried out by nurses. Findings indicate that participants’ actions were

guided by a desire to focus on the needs of the ‘person’ in the bed as

opposed to the ‘patient’ in the bed.

“So basically [I] ask the patient what they want to do now if

they are in a fit state to answer that. So whether they want

to stay in hospital, whether they want to try and get home,

or whatever is suitable for them. Obviously in discussion with

the patients’ relatives [we discuss if it] is a feasible option to

go home, and then depending on what is decided, if they are

16

Negotiated dying – how nurses shape withdrawal of treatment in hospital Critical Care Units

going to stay in hospital what's best for them; whether they

go on the Liverpool Care Pathway i or not at that point,

whether we need to contact palliative care to see if they

need to go to a hospice, and take the appropriate actions

towards what they want to do” [6:5 (27:27)].

These discussions with both the patient and the family set the aims for

withdrawal of treatment with the focus of achieving what Glaser and

Strauss [1968] refer to as ‘living whilst dying’ [p: 99].

In CICU, GICU and NICU nurses appeared to assess patients’ wishes by

talking to the patients’ family, and considering their own view of how

death ‘should’ proceed. Nurses had a pivotal role in assessing the families

understanding of what would happen during treatment withdrawal and

communicating the actual, as opposed to, the perceived dying trajectory

to them.

“We would sit down with the family as you then have them

updated and sort of see. It’s always broached from a medical

point of view although we may have almost sounded them out

to feel what their views are, trying to sort of ascertain what the

patient would have wanted, what quality of life they had

beforehand, and what their expectation was afterwards. The

actual kind of, you don’t feel there is anywhere else to go, would

be done ideally with the consultant anaesthetist on shift and

with the nurse at the bedside. We would be saying that for

whatever reason we are not able to support the patient, for

example, the level of drugs are not actually getting anywhere,

we are going up and up and up and nothing is making any

difference, that nothing further can be done from the surgical

perspective, and then we will see what the family’s reaction is to

that. I mean it would never have come as a shock to them

because we would have been kind of leading to that point, but I

don’t necessarily think that everybody takes it on board” [5:6

(26:26)].

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Negotiated dying – how nurses shape withdrawal of treatment in hospital Critical Care Units

Family ‘feedback’ influenced the ongoing process of withdrawal of

treatment as nurses were assessing the family dynamic, as well as

individual needs. Assessment often led to care being amended, the

amount and content of information that the nurse shared with the family

being modified, the accuracy of family members’ understanding of

information shared being reviewed, and further contact with medical

colleagues being arranged.

“but before that [commencing withdrawal processes] I would

discuss with the family about did they understand everything

were they ready for this, how they wanted to sort of go about

things, did they need more time was there any family members

that they needed to come down, did they want anything else,

did they want a Chaplain. Basically is there anything else that

we could do to make it kind of best a situation as possible really,

and then just ask them whether they want to be with the

patient. I would explain everything that was going to happen,

including what to expect, in a sense warning them that the

patient might begin coughing, to expect certain unpleasant side

of death really because I think they need to know if they want to

be there. They need to know what to expect as it is not always

nice, but I feel that if you are made aware of something then

you can cope with it better. Then I would ask them if they

wanted me there or whether they wanted to be on their own,

and just kind of be guided by them really, but obviously be on

hand all the time as I have had situations before where we have

withdrawn and it has taken quite a long time for the patient to

die” [11:1(10:10)].

Information gained from nursing assessment of the family dynamic was

communicated to medical colleagues with the aim of moving plans for

withdrawal forward.

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Negotiated dying – how nurses shape withdrawal of treatment in hospital Critical Care Units

“From my point of view I consider that you are the go-between

really. You are constantly reassessing the family and you’re

assessing your doctor as well really and if you have concerns

about where the treatment is going, and you know what the

family’s feelings are, then you do kind of say to the doctor, well

I don’t know what your thoughts are, or what your plans are,

but the family have said this, that, and the other” [10 3:4 (11:11)].

Operationalising withdrawal of treatment processes

To make death visible, Seymour suggests clinicians ‘negotiate’ a ‘natural

death’ by aligning divergent ‘technical’ and ‘bodily’ death trajectories

[Seymour, 2001: 95] so that death can take place at the right time. This

was supported in participants’ accounts via descriptions of doctors

requiring a gradual reduction in drugs and/or oxygen to mimic the

gradual decline that is often associated with death. If this construct of

dying in ICU was in conflict with the construct of the nurse, it led to

tension.

“So it depends on the patient and also the consultant as well

[as] they have all got their own ways of doing things and some

of them say start turning the oxygen down, some say start

turning the norad down and turn it down by 2mls every two

hours, I personally can't get my head around that I just think if

it is withdrawal why drag this out by chipping at the

Noradrenalin, turn it off. The family know what's going to

happen. I always try to put myself in their position and I think if

it was my mum/dad whatever, I wouldn’t want to be sat there

for hours and hours and hours and hours. Personally if I knew it

was going to happen turn it off and get it over with as quickly as

possible so that the grieving process can start, but some

consultants say you know just cut down a ml an hour or a ml

every half hour and I have challenged that before but that’s the

way certain consultants like to do it, but I just don’t understand

it” [1:11(54:54)].

19

Negotiated dying – how nurses shape withdrawal of treatment in hospital Critical Care Units In situations where there were contested boundaries about what could or

could not be done, nurses negotiated a way forward.

“I think I am fairly straightforward with the doctors,

particularly when it actually comes to the act of withdrawal,

so I think I would discuss with them what the plan is

because a lot of the time I have found that the doctors don’t

like to turn things off, they like to leave things where they

are while the patient deteriorates, and then when it comes

to the point of them deteriorating, there is the what do we

do about the ventilator etc. So normally I would sit down

with the doctors and say right, what we are going to do?

Are we actually going to physically turn things off?’ And

normally a plan will be laid. I feel it does vary from doctor to

doctor as to whether they take the lead or whether they shy

away from it and kind of let us say to them, you need to do

this now, you need to do that now, which I do sometimes

find quite difficult because I feel that’s not really, I shouldn’t

be telling them what needs to be done, they should be

proactive within their own role really” [10:9 (32:32)]

How dying proceeded encapsulated many elements including: reducing

support drugs [these differed by speciality], weaning ventilation and

extubation, increasing sedation and analgesic medications, addition of

comfort measures [anticonvulsant and antimuscarinic drugs], oxygen

therapy [RHC], reducing/fluids [RHC]. Nurses also identified the

importance of considering the place of death [moving to a single room],

whether the family was present and aware of what was going to happen,

whether the dying patient was pain free, and calm [no agitation or fitting].

Nurses usually removed monitoring equipment from the close proximity of

the patient and family to ‘de-intensify’ the environment so that the

“patient is given back to the family as they came to us” [2-29(73-73)]. In

this way the nurse could construct the death that best represented what

he/she perceived a good death to be both professionally and personally.

20

Negotiated dying – how nurses shape withdrawal of treatment in hospital Critical Care Units

“It needs to be calm, ideally in a side room if it is feasible to

move them. Sometimes it is not, but at least having the clutter

out of there, out of the bed space. Then very much guided by

the family and the patient as to what is the best way or what is

sort of appropriate for them. If they [the patient] are not on

huge amounts of support, whether we can just perhaps extubate

them and make sure that they are comfortable, and just let

them go naturally as opposed to sort of just switching things off,

and then just being able to give the family time there at the

bedside would be my ideal” [5:14 (86:86)].

Nurses appear to be reshaping withdrawal of treatment, which lacks the

concept of care, into end of life care, which articulates it. Operationally,

treatment withdrawal and end of life care have temporal contingency,

they are dependent on each other, but can gradually reducing treatments

[drugs, respiratory support etc] and removing equipment be articulated as

care? It might be argued that withdrawing treatments is the way that a

diagnosis of dying is ‘treated’, in the same way that the diagnosis of heart

failure might be treated with drugs, or surgery. We argue that nurses are

tasked with caring, and despite working in a technologically intense

environment, critical care nurses seek to weave caring into treatment

withdrawal so that it reflects their view of good end of life care.

Conclusion

End of life care currently holds a key health focus in the UK and is well

explored in the literature. A key theme to emerge is the tension that end

of life care provokes between doctors and nurses in Critical Care [Breen et

al, 2001]. Tensions are linked to the differing team perspectives regarding

when withdrawal of treatment should commence, and the lack of

involvement of nurses in the ‘process’ of decision-making [Robichaux and

Clark, 2006; Bach et al, 2009]. Authors suggest that critical care nurses

associate a quality death with: establishment of a diagnosis, the

nurse/family being present at the time of death, withdrawal of life

support, and no resuscitation measures instituted 8 hours prior to death

[Hodde et al, 2004]. Others suggest that physicians focus on death taking

21

Negotiated dying – how nurses shape withdrawal of treatment in hospital Critical Care Units place at the right time [Harvey 1997], with surgeons operating from a

position of battling death on the patient’s behalf, and anaesthetists basing

practice decisions on allocation of limited resources (Cassell et al, 2003).

In view of such inter-disciplinary differences in aims, attitudes and

philosophies, it is not surprising that the process of withdrawal of

treatment in Critical Care environments, in both the UK and elsewhere,

has created ethical and moral dilemmas in relation to end of life care. It

may be that such differences can be explained by the differing

responsibilities of each discipline. Doctors are responsible for diagnosis

and prognosis and they are legally tasked with making withdrawal of

treatment decisions, therefore their clinical view may be focussed on

‘extending life’ while nurses, as they operationalise processes, may be

focussed on ‘allowing life to end’ [Cook, et al, 2006]. These differing views

may lead nurses and their medical colleagues to a situation where the

boundaries around what can and cannot be done, and the timing

associated with how processes are withdrawn are contested [Svensson,

1996].

The findings reported in this paper indicate that when planning and

implementing withdrawal of treatment clinical teams need a ‘shared’

understanding of each other’s roles, responsibilities, aims, and

motivations; both attributed by others and assumed by the individual. It is

hoped that this paper will contribute to professional discussions and add

to a developing body of international work that seeks to influence the

future direction of end of life care in critical care arenas.

Critique of the study

We are unable to offer an explanation as to why there was such a low

response rate from NICU, other than a comment made by the one

participant recruited who stated that the study could have been better

publicised within NICU.

22

Negotiated dying – how nurses shape withdrawal of treatment in hospital Critical Care Units Funding

This study was funded by the Burdett Trust for Nursing.

Acknowledgements

We would like to acknowledge and thank the participants who so

generously gave up their time over the duration of the project.

We would like to thank the project Advisory Team: Rev Bill O’Connell, Sue

Haig and Dr Lynda Rogers-Beel for their expert advice and support.

23

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