an exploratory study of patients' perceptions, memories and experiences of an intensive care...

An exploratory study of patients'perceptions, memories and experiencesof an intensive care unit

Sarah Russell RN Critical Care Certi®cate BA (Hons) PhD

La Trobe University, Australia

Accepted for publication 22 April 1998

RUSSEL S. (1999)RUSSEL S. (1999) Journal of Advanced Nursing 29(4), 783±791

An exploratory study of patients' perceptions, memories and experiences

of an intensive care unit

In the research reported, 298 patients were asked to describe their memories of

the Royal Melbourne Hospital's intensive care unit (ICU). The data were

collected by either self-reported questionnaires or structured interviews and

examined from a bio-psycho-social perspective using both qualitative and

quantitative methods. These recollections demonstrate that the close surveil-

lance by both technological support and health care practitioners provide many

patients and their families with a feeling of safety. Patients' memories of ICU

also highlighted the presence of power relations which are inherent in clinical

practice. This paper provides examples of actions and remarks within ICU that

were not only remembered by patients and their families but also continued to

effect patients 6 months after their discharge. The data in this research indicate

that some of the psychological problems experienced after discharge may have

been prevented by improved communication between staff and patients in ICU.

This study also demonstrated the importance of providing feedback to the

nurses working in ICU. This feedback raised awareness of patients' perceptions

of both ICU itself and the behaviour of the staff. It also reminded staff that some

patients remember everything about their admission of ICU. The data indicate

that while patients found the presence of good communication in ICU both

therapeutic and reassuring, they found the lack of good communication

distressing. Poor communication not only caused anxiety while the patient was

in ICU but also contributed to less than optimal recoveries after discharge.

Finally, it will be argued that the provision of information from nurses not only

diminished feelings of anxiety but also empowered patients to become involved

in decisions about their care.

Keywords: intensive care unit, patients' experiences, knowledge, nursing,

medical technology, communication

INTRODUCTION

Despite the importance of effective communication in an

intensive care unit (ICU) being well documented, studies

have shown that it is often dif®cult to achieve optimal

communication between staff, patients and relativesCorrespondence: Sarah Russell, 86 Clarke Street, Northcote,

Victoria. 3070, Australia.

Journal of Advanced Nursing, 1999, 29(4), 783±791 Issues and innovations in nursing practice

Ó 1999 Blackwell Science Ltd 783

(Ashworth 1984, Parker 1984, Salyer & Stuart 1985,

Nievaard 1987, Tosch 1988, Stanton 1991, Turnock

1991, Berbom-Engberg & Haljamae 1993, Leathart 1994,

Butler 1995, Hagland 1995). Hagland (1995, p. 114)

suggested that any attempts to address the problems of

communication in intensive care units (ICUs) must take

into account the `complex nature of this enigma', arguing

that it is only by listening to patients and relatives who

have experienced problems with communication in ICU

that nurses can improve their care.

It has been suggested that a good communication

climate can stimulate therapeutic behaviour, resulting in

positive outcomes for patients (Cassee 1975). McKinley

et al. (1997), for example, identi®ed speci®c actions by

nurses, including good communication, that can reduce

patients' anxieties in ICU. Although nurses are well aware

of the need to communicate with patients in ICU, there is

evidence to suggest that this often fails to occur (Baker &

Melby 1996, Hagland 1991, Ashworth 1984). The commu-

nication problems observed over a decade ago by Ash-

worth (1984) are also evident in the more recent studies

(Baker & Melby 1996, Butler 1995, Leathart 1994, Hagland

1991). Baker & Melby (1996), for example found that

nurses spent on average only 5% of their time engaged in

verbal communication with unconscious patients.

To attempt to explain the communication dif®culties in

ICU, Turncock (1991, p. 165) argued that it was dif®cult

for nurses to hold `lengthy conversations with unrespon-

sive patients' while Leathart (1994, p. 103) believed that

nurses learnt that `by minimising interaction with patients

they can minimise their own anxiety'. Yet Baker & Melby

(1996) argued that the small amount of time spent com-

municating with patients was not the only problem. They

also found that most communication with patients was

directed towards informing them of procedural matters

rather than providing them with explanations about their

condition and progress. Asbury (1985) found that many

patients would have preferred to receive more information

from nurses, arguing that such information reduced pa-

tients' anxieties. It has been shown in a number of studies

that information given to patients and families can not

only reduce anxiety but also empower them to become

involved in the decision-making process (Jones & O'Don-

nell 1994, Raleigh et al. 1990).

The data in this study indicate that good communica-

tion can enhance recoveries while poor communication

may lead to less than optimal outcomes, as demonstrated

by the following vignette:

Ann is a 65-year-old woman who spent 2 months in the intensive

care unit (ICU), most of that time in a critical condition. Years

later she looked terri®c. I described her as an ÌCU success story'.

She started to cry, explaining that her experiences in ICU had

taken away her dignity. She remembered being washed in bed,

lying naked, while staff joked about their social lives. She told me

that without dignity she would rather be dead. Everyday for the

past 3 years she has wished that she was dead.

Background

The ®ndings presented in this paper are a small part of a

research project which followed up all admissions to ICU

at The Royal Melbourne Hospital between 1 July and 31

December 1993. This ICU is a general medical and surgical

adult unit in a large, metropolitan teaching hospital in

Australia. It admits approximately 1300 patients per year.

One of the aims of the research was to explore patients'

memories of ICU and the effect these experiences had on

their long-term recoveries. This included documenting

patient's attitudes to the care that they received in ICU.

The purpose of the study was to provide feedback to

nurses about patients' experiences in ICU and to identify

problems that may be alleviated through changes in

practice. Stanton (1991) argues that feedback can help

nurses to improve care given to patients and relatives. It

can also raise awareness of the importance of nursing and

psychological care in ICU. Hagland (1995) suggested that

the highly technical nature and medical domination of

ICUs often overshadow the nursing and psychological care

that is so important to patients' recoveries.

Richards (1991) suggests that the major consumers of

medical technology, the patients, are frequently excluded

from the formal evaluative process. In this research, the

subjective impressions of patients were documented and

analysed. Consistent with previous studies, many patients

had memories about their treatment in ICU (Asbury 1985,

Tosch 1988, Butler 1995). This is demonstrated by the

following vignette:

Colin is a 67-year-old man who spent 93 days dependent on a

ventilator. He is one of the few people to have ever travelled down

a busy city street in a bed while attached to a ventilator. He

remembers this outing, organized by the nursing staff, as the

highlight of his stay! In fact Colin remembers everything Ì even

know how many holes there are on the ceiling!', he said. Ì used to

keep myself sane by counting them each day'. He remembers

feeling very `safe' attached to the ventilator: Ì was cared for' he

said, `but who cared for my wife? At times I felt that I was the

lucky one'. He also remembers his loss of dignity: Ì did not like

being in the nude for 93 days. I found it embarrassing'.

THE STUDY

Methods

Six months after discharge from ICU, the researcher

contacted 370 patients and invited them to participate in

this research project. As there is considerable doubt about

how useful a questionnaire is for attitudinal information,

the preferred method for collecting data was to interview

all patients in their homes. Given the sample size, a

S. Russell

784 Ó 1999 Blackwell Science Ltd, Journal of Advanced Nursing, 29(4), 783±791

combination of interviews and self-reported question-

naires was used: 212 patients completed a mailed ques-

tionnaire and 86 were interviewed.

The researcher conducted both home and telephone

interviews. The criteria for home interviews were the most

critically ill patients (class 4) who had spent longer than 1

week in ICU. There were, however, no selection criteria

for the phone interviews. Telephone interviews occurred

spontaneously. In some cases, the method of a telephone

interview was chosen because the assistance of the

telephone interpreter service was required. In other cases,

the patient was very talkative and it was expedient to

direct the conversation towards speci®c questions on the

questionnaire. The longest telephone interview took over

1á5 hours. Although these telephone interviews were not

tape-recorded, extensive notes were taken and the mate-

rial was used in the qualitative analysis. In fact, all

material, whether transcribed from structured personal

interviews, documented during telephone conversations

or written by the patient in the questionnaire, was

included in the qualitative analysis. Although these

different modes of data collection affected the depth and

quality of the qualitative data, the data were not analysed

separately.

Ethical considerations

The 18 patients who were interviewed at home were

invited to read and make changes to the typed transcript of

the interview. Although none accepted the offer to read

their transcripts, they all gave permission for their stories

to be told with the explicit understanding that the

researcher would remain faithful to their personal stories.

The 68 patients who were interviewed on the telephone

also gave permission for their stories to be repeated. All

respondents of the questionnaire, both written and verbal,

gave consent with the understanding that their identities

would remain anonymous. It was agreed that they would

be identi®ed with a numerical code.

Data analysisThese 298 respondents described their memories of ICU,

including any upsetting experiences. As an indication of

their psychological response to their experiences in ICU,

they were then asked how often they thought and dreamt

about being critically ill. Finally, they were asked to

describe their reaction to the life-support equipment that

was used in their treatment and whether they would want

to be treated in ICU again. Qualitative information gath-

ered from both the written responses and the transcripts

from the interviews, was explored, coded and analysed

using NUD.IST, a computer software program designed for

qualitative data analysis.

The combination of qualitative and quantitative meth-

ods used in this research project enriched the analysis.

Individual stories were legitimated by the context in

which they were located. In this study, both the statistics

and the bio-psycho-social perspective provided the con-

text. The statistics not only strengthened but also politi-

cized the patients' narratives. The qualitative data were

interpreted by the researcher using a thematic analysis

informed by a bio-psycho-social perspective.

Findings

Patients' voices from within an ICUDuring an admission to ICU, patients were frequently

without a voice. There were many reasons for this voice-

lessness such as fear, lack of knowledge/information,

cultural and language barriers and feelings of disempow-

erment. The most common reason for this voicelessness,

however, was intubation:

There was a tube down my throat. I couldn't talk.

The questionnaire gave respondents the opportunity to

speak up and describe their experiences in ICU. Unfortu-

nately, factors such as medication and the nature of the

illness left 34% (101 patients) with no memory of being in

ICU. Nevertheless, 42% (126 patients) had some memory,

while 24% (71 patients) stated that they had a clear

memory of being in ICU. In describing their individual

memories of ICU, some respondents had a lot to say,

others kept their responses brief. From these responses, 10

thematic categories (nodes) were created and individual

responses were indexed to these nodes. The results are

summarized numerically in Table 1. This is followed by

patients painting a picture of their memories.

Patient 40 described ICU as `such a weird place'. She

was extremely conscious of machines going `beep':

Table 1 Patients' memories of the ICU

Category of response Number

Care by health practitioners in the ICU 137

Technological support in the ICU 29

Relatives visiting 13

Procedures and treatments 11

Noise in the ICU (including radio) 11

Other patients in the ICU 9

Feeling of safety 4

Fear 3

People everywhere 3

Lack of personal control 2

Issues and innovations in nursing practice Experiences of intensive care

Ó 1999 Blackwell Science Ltd, Journal of Advanced Nursing, 29(4), 783±791 785

There were so many machines. Like a sci-® movie Ð me with my

red-glowing ®nger.

While ICU reminded Patient 40 of outer space, it remind-

ed others of factories and war zones. Although Patient

588's wife felt comfortable in factories, she did not like

`watching the sick people' in ICU:

(It was) like being in a factory. Everyone busy looking after the

sick. Running here and there. Very busy¼ I'm used to factories

with the crashing and banging. It was watching the sick people

that bothered me.

Other `sick people' also bothered Patient 171. She remem-

bered ICU as a `war zone'.

The place was very upsetting. Like a war zone. I remember

hearing a man making animal noises.

Patients `screaming for hours' disturbed Patient 70 so

much that he was ùnable to sleep in ICU.

Several patients commented on the close surveillance.

Some remembered being monitored by `lots of machines

(Patient 12) while others remembered `24-hour surveil-

lance by personnel' (Patient 157). Patient 131 commented

on both:

Being hooked up to machines. Alarms. Always busy. Jabbed,

poked, prodded, pain, scary seeing others around you very sick.

All the IV bags, so many drip lines. Doctors all the time.

Distinctive smell.

Although the close surveillance by technologies provided

many patients and families with feelings of physical

safety, it was often the reassurance and explanations give

by health care practitioners that provided the emotional

safety. Patient 578 remembered very little about being

monitored postoperatively in ICU. She does, however,

remember having her hand patted by a health care

practitioner, con®rming the bene®ts of touch that were

noted by Estabrooks (1989) and Verity (1996):

I remember very little, except at one stage, momentarily, feeling

very ill and frightened. I recall a man patting my hand and

expressing sympathy. I immediately felt comforted and remember

this gesture with gratitude.

Although some respondents described the experience as

`frightening', and remembered being a `bit bamboozled' by

all the technology, it was the health care practitioners who

`made all the difference'. Patient 126, for example, trusted

the health care practitioners:

It was the attention of the staff that made me feel safe more than

the equipment. People were often reassuring me. I trusted what

people said.

For many patients, it was not only the attention but also

the health care practitioners' expertise that made them feel

safe. Patient 84, for example, felt she was in good hands.

I was taken care of very regularly ± this made me feel very safe

and secure, and that I was in good hands and amongst experts.

It is important to recognize, however, the diversity of

experiences in ICU. Although Patients 271 and 326, for

example, both attempted suicide, their impressions of the

care they received were quite different:

I remember that there was a nurse who was very caring and had

time to listen to me and she never judged me¼. I had to face up to

what I had done and try to explain why I did it.

One of the nurses was particularly rude and because I had tried to

end my life, she expressed her opinions that I should not be

complaining and wanting to leave because it was my fault for

being there in the ®rst place. This was true, however, she made,

me feel very uncomfortable with her intimidating views.

There were also instances when the expert health care

practitioner, the patient and the family saw a situation

quite differently. A patient's wife, for example, became

frustrated when her husband, paralysed and ventilated,

was frequently described as `clinically well':

If I heard them say `he's clinically well' one more time I would

have screamed. What is `clinically well?

`Clinically well', through a biomedical lens, indicated

sinus rhythm, suf®cient urine output and normotensive.

To Patient 486's wife, however, the unconscious patient

was `critically ill' not `clinically well'.

While many patients described recollections of ICU

using descriptive adjectives and phrases such as

`busy', `machines going beep', `very noisy', `cold', `bright

lights', àll wired up' `people everywhere', `patients

screaming', `relatives wailing', `too scared to sleep', ùnable

to move', àlarms ringing', Patient 509 stated quite simply:

I remember that it was boring.

Upsetting experiences in an ICURespondents were given the opportunity to speak out

about their upsetting experiences in ICU. These responses

were analysed thematically by creating seven nodes.

Although the results are summarized in Table 2, these

upsetting stories were frequently accompanied by tears

and anger:

(It was) said in front of me that Kathy was not going to be all right

and that we may as well pull the plug¼ (The nurse) was talking to

another nurse at the foot of the bed and I was sitting beside Kathy.

I could hear him clearly. (Patient's mother)

The long-term repercussions of this remark highlighted

the responsibilities nurses have to both the patients and

their families. In this case, the thoughtless and insensitive

remark was probably forgotten by the nurse soon after it

was spoken. Nevertheless, it angered a family for 6

months. Despite expressing gratitude for the technologies

S. Russell


and the treatments in ICU, the lack of communication

skills in ICU dominated the discussion:

The 2 years that Kathy had been sick, we were always told exactly

what was going on. We were used to being talked to as if we knew

what was being talked about¼ This was the approach we were

used to ± honest communication. We found this a great help.

Kathy especially needs to know what is going on. To have some

uppity shit-wik like that (in the ICU) ± it's pretty upsetting.

(Patient's father)

According to Green (1996), patients' ability to hear staff

discuss their care (or another patients' care) are not given

enough consideration by health care practitioners. Patient

378, for example, remembered hearing only bits and

pieces of conversation during the bedside ward rounds.

This led to misinformation and fear.

Remembering dreamsIn describing upsetting experiences in ICU, 22 patients

mentioned their dreams in ICU. Whether these were drug-

induced Ð Ì had the worst dreams. I think it is all the

drugs. I wish the manufacturers could take out the bits

that make you have such frightening dreams' (Patient 179);

the result of sleep deprivation Ð Ì was (too) scared to

sleep' (Patient 131); a near death experience Ð Ì had one

of those death experiences that people talk about' (Patient

486); or perhaps even an acute psychosis, requires further

research. From the ®ndings of this research project, the

memory of these dreams often lingered, sometimes pre-

venting a full psychological recovery. Six months after

discharge from ICU, the disturbing dreams left some

patients ashamed while others remained terri®ed. Ac-

cording to Green (1996), it is important to provide patients

with the opportunity to clarify what is a dream and what

is reality.

Patient 293 was embarrassed to think of what he had

done when he was in ICU. He remembers removing all his

tubes and hiding in the broom cupboard:

I went back to New Guinea jungle days 1942±45. Another time I

believed that I was in a brothel for purpose of compromise. Upset

me to the extent of bearing loose from drip and many tubes and

out of bed staggering to god knows where. Actually ®nished up in

broom cupboard. Then I was put in a new place with horrible tie

downs.

Patient 293 had been troubled by his memories of ICU. He

became more at ease when I explained that many patients

become disorientated in ICU, removing tubes and trying to

escape over cot-sides. I explained that he did not, after all,

spend any time in the broom cupboard and that he was

certainly not the ®rst, nor would he be the last, who

required `tie downs' to ensure safety.

Table 2 Upsetting experiences in an ICU

Upsetting experience They said¼

15 patients described a `bad' nurse Staff can't be bothered to talk or listen to people¼ They seem to

forget it's not just a job. You are working with human beings.

Individuals with different values of life. It's not just a 8±5

factory job with metal. This is life (patient 231)

13 patients described the lack of privacy A patient next to me was distressed. I felt like an intruder hearing

all his screams of distress (patient 40)

10 patients described feelings of fear My husband felt a lot of fear. He remembers initially feeling safe

when I arrived in ICU Ð he felt con®dent once all the

technology was present. Then he was shocked to be told that I

may still die despite all that was being done for me. He was

shocked because he felt `how could she die with all this

technology Ð surely modern medicine can keep her alive'. Then

he became really fearful (patient 40's husband)

10 patients remembered the pain and discomfort

of treatments

Automatic blood pressure machine¼ I had to brace myself to stand

pain from this unit (patient 159)

8 patients were distressed by the noise The noise the staff make. When there was nothing to do Ð joking,

laughing, talking about social life, what pub they were going to

after shift. Where they were going for holidays Ð Bali, etc.

Girlfriend±Boyfriend relationships (patient 231)

3 patients felt alone without their loved ones (They) never rang my family to tell them I was in ICU on a life

support machine after the operation. My family didn't even

know I was there (patient 581)

2 patients described the lack of dignity in an ICU It's as though `well, you're alive. What more do you want?' I'm not a

statistic. I'm a person with a family, etc' (patient 581)



Patient 394 was also disturbed by his memories of ICU.

Six months later, he had a vivid, but distorted, memory of

being restrained and having a nasogastric tube inserted:

Throughout all that time I was a captive¼ I was con®ned to this

big cot. And I was chained to it ¼ This bloke was a villain. He

was always at me for doing something wrong. And a couple of

times I was almost naked. All I had on was a shirt. I was captured

in this cot ¼ Trying to hide, you know. Being uncovered¼ This

bloke asked me to do something. And I said I will not do it. In the

®nish, he got hold of a screwdriver and screwed it up my nose.

Now will you do it, he said. And I said, no way. I was very

determined.

The power relations of life in an ICU were evident in

stories of being held down, restrained and medicated ìnto

oblivion'. Patient 103 felt ÀSIO' was going to kill him,

Patient 181 thought the nurses were policemen òut to get'

him and Patient 378 thought a nurse was a `voodoo

woman'. For Patient 581, these `terrible nightmares of

nurses trying to kill' him contrasted with his memories of

being cared for by nurses.

Reacting to the technologyAlthough 76% of patients responded that they had either

no memory or only a vague recollection of the technology

in ICU, many relatives remember spending hours staring

at the monitors and machines that surrounded the bed.

Most, such as Patient 378's father, found the technology

reassuring:

From a technical view point, I found them reassuring. I could read

what was going on. I was watching it and seeing the improve-

ments. (Patient's father)

Some relatives, however, found their lack of knowledge

about the technology frightening. This fear was alleviated

somewhat by explanations from nurses:

It's very scary for parents who go in there. Your kid is hooked up.

The nurses are so busy that they haven't got time to sit and

explain it to you. All of a sudden an alarm goes off and you're so

helpless because you can't do anything. You can't touch anything.

Then you worry. (Patient's mother)

I think talking to the nurses made all the difference. Having

everything explained. (Patient's mother)

Although patients may or may not remember the tech-

nology, only 41 patients (14%) expressed ambivalence

when they were asked to describe their reaction to the

equipment that was used to treat them in ICU. In fact, 239

patients (81%) responded that they were extremely pleased

that it was used. The results are shown in Table 3. Patient 57

and Patient 444, for example, acknowledged the role that

the life-saving technologies played in saving their lives:

Guess I wouldn't be here if it wasn't for it.

Machinery there for a purpose. Wouldn't know what it was but

I'm sure glad it saved me.

Patient 193's grand-daughter, however, regretted that

the life-saving technology was used. She believed that

health care practitioners used it because they `could', not

because they `should'. Whenever she visited her grandfa-

ther in the nursing home, he cried:

All he wants to do is die. (Patient's grand-daughter)

Although the grand-daughter was extremely upset that the

life-saving technology was used, other respondents spoke

with admiration about `what they can do nowadays'.

Patient 568, for example, thought the machines were

`marvellous'. Patient 116 also thought ICU was `wonder-

ful'. She, however, was one of the few patients to

acknowledge the ®nancial cost of an ICU:

My word. I think it's wonderful. People with money should

help¼ all those machines must be expensive.

Unlike this patient, Patient 582 was critical of the amount

of public money being `wasted' on him. Although he was a

young man, he had accepted that he was `dying from

cancer':

Treating me in ICU was an utterly pointless waste of time and

public money. Why bother? The world is already overpopulated. I

could be buried for less that one thousand dollars, much less than

this has already cost Medicare and the Department of Social

Security.

Power to decideTable 4 summarizes the responses given when patients

were asked about becoming critically ill in the future.

Although 80% (236 patients) replied that they would want

Table 3 Patient's reaction to equipment used in the ICU

Reaction to equipment being used in ICU Number

Extremely pleased that it was used 239 (81%)

Moderately pleased that it was used 14 (4.7%)

Neither pleased nor upset that it was used 41 (14%)

Moderately upset that it was used 0

Extremely upset that it was used 1

Table 4 Patients' preference for further treatment in the ICU

Further treatment in ICU Number

Yes, under all circumstances 236 (80%)

Yes, under certain circumstances 28 (10%)

Unsure 22 (7%)

No, except under certain circumstances 5 (1á5%)

No, under no circumstance 5 (1á5%)

S. Russell


further treatment in ICU under all circumstances, 10% (28

patients) quali®ed their response. Patient 301, for exam-

ple, wanted to leave the decision up to the expertise of

`experienced' health care practitioners:

What machines I need, I leave to the experienced doctors to

decide.

Transferring the responsibility of life and death deci-

sions to doctors and nurses was common among some

older patients who believed that patients should not make

such decisions. Patient 486 believed that he had no say in

whether he was put back on a life-support machine:

It would depend on them, not me¼ I'd have no say in the

matter¼ It's up to them.

Patient 403 wanted no say in the matter. He did not want

to have to "worry about making such decisions. It's up to

doctors whether I want it or not."

Although Patient 411 did not want any further treat-

ment, she was prepared to go back on the life-support

machine if the health care practitioners felt it was appro-

priate:

Whatever doctor says, but I don't want to do anything more.

In doing `whatever doctor says', there was an implicit

understanding that the doctors and nurses would do what

was `best':

Whatever the doctors want to do. Whatever they think is best for

me.

Several patients found the question about their prefer-

ence for further treatment on life-support dif®cult to

answer by ticking a box. These patients used the margins

beside the box to express themselves more fully. Patient

138, for example, did not want any further treatment in

ICU, but wanted to stay alive for her family's sake. She

described doing `everything to stay alive' for the sake of

her children:

(I) only want it because my children would be very upset if I

didn't do everything to stay alive.

Moving on from ICUMany patients in this dataset moved on after experiencing

a critical illness. To get on with life, ICU was left behind.

Patient 167, for example, wanted to put the whole event,

even the tracheostomy scar, in the past:

(I) never think about it Ð I'd go mad if I though too much about

it¼ Even the scar from that thing in my throat has gone.

Six months after discharge from ICU, 109 (37%)

patients recorded on the questionnaire that they never

think about being critically ill. According to the ques-

tionnaire, the scars had all gone. Yet for some, even those

who made a full physical recovery, their experiences in

ICU were the most traumatic experiences of their lives

and, 6 months later, it remained very much in their

thoughts. Fifty four (19%) patients responded that they

often thought about being critically ill and 128 (44%)

patients acknowledged that they sometimes thought about

being critically ill.

For some, it was the knowledge that they nearly died

that lingered. For others, it was a particular event in ICU

that they remembered. In Patient 557's case, it was both:

I remember hearing a voice saying `His blood pressure's dropping,

it's 60,57,55.' Another voice saying `Tell me when it is 50 and we

can all knock off'. I still think of that sometimes.

Believing that you nearly died, or that the staff contem-

plated `knocking off' during your resuscitation, may have

caused Patient 557 psychological trauma, perhaps even

post traumatic stress syndrome. He, however, was among

those who dismissed any suggestion of counselling. For

this group of patients, nearly `popping off' was not

something to be dwelt on:

I try not to think that I nearly popped off. I know that I beat the

odds. They all thought that I was going to die. Sometimes I talk

about it, but I don't dwell on it. I certainly don't need to see a

counsellor or a shrink to talk about it. I've put the past behind me.

Other patients, however, believed that counselling, or

even having someone to talk to at the time, would have

helped them and their relatives:

My family still have nightmares. I think they would have

bene®tted from having someone to talk to at the time. Especially

my daughters. I suggested counselling now but it would have

been better to have it at the time.''

To move on from ICU it was necessary for some patients

to return to ICU for a visit. Although revisiting ICU was

helpful for many patients, especially those patients who

returned with either a ward nurse or the hospital chaplain,

a revisit was not always possible. Patient 581, for example,

was unable to revisit ICU because the staff were too busy.

Her daughter felt that the revisit may have helped her to

put her ordeal in the past:

We thought it would be good for mum to go back to ICU to see

where she spent 2 weeks of her life, but the nursing staff in the

ward told us that they would be too busy. She is still having

nightmares about ICU. (Patient's daughter)

`Having nightmares' after discharge from ICU was not

common. In fact, 231 patients (79%) stated that they had

not experienced any dreams about being critically ill since

their discharge from ICU. According to Patient 179:

I'm sure if I was distressed, it would have come back to me in

dreams, etc. But it hasn't.

Although only 15 patients (5%) described frequently

dreaming about being critically ill, these patients were



often disturbed by their dreams. Patient 171, for example,

described `evil, disturbing and gruesome ¯ashes' that were

very upsetting:

My doctor says I look OK, but I don't feel OK.

There is a need for awareness of psychological problems

after discharge from an ICU. Patient 290, for example,

became `very depressed' when she was unable to do her

normal activities. She was also very upset because she

could not remember anything about ICU. She told her

general practitioner that she was unable to sleep. The

general practitioner prescribed sleeping tablets. Six

months later, she was admitted to a psychiatric hospital

suffering from her ®rst episode of depression. Her daugh-

ter wished there had been someone for her to talk with.

Patient 394's wife, on the other hand, believed it was all in

the head:

To me it's not only the treatment in ICU, a lot of it's up here Ð in

the head. Some people just can't help but worry about them-

selves. Others can put it out of their mind and just get on with

their life. (Patient's wife)

DISCUSSION

Improving patient outcomes from ICU:some recommendationsIn some cases, the upsetting experiences that occurred in

ICU hindered recoveries, especially psychological recov-

eries. This study identi®ed poor communication, lack of

privacy, fear, pain and noise as the main causes of

psychological problems faced by patients after ICU. These

factors were similar to those identi®ed by other studies

(Asbury 1995, Wallington-Smith 1986, Stanton 1991,

Baker & Melby 1986). To protect patients from these

harmful effects of ICU Wallington-Smith (1986) believed

that nurses should decrease noise levels, Baker & Melby

(1996) recommended education about the importance of

communication and Asbury (1985) stated that nurses

should maintain privacy of patients wherever possible.

While these recommendations are clearly important, it is

also important that nurses in ICU are aware of the power

relations inherent in clinical practice. An awareness of

this power imbalance may assist nurses to be more

conscious of patients' rights. These rights include a right

to privacy, dignity and a right to information.

The ®nal recommendation is to arrange follow-up

meetings in which patients and their families are invited

to return to ICU. The aim of these meetings would be to

provide a forum for groups of patients to discuss their

experiences. As observed by Friedman (1992), follow-up

clinics not only help patients but also assist staff morale

by providing invaluable feedback. Such feedback also

raises awareness of patients' perceptions of both ICU itself

and the behaviour of the staff.

CONCLUSION

By documenting patients' recollections of ICU 6 months

after their discharge, this paper has described an eclectic

array of voices. While some patients described vivid

memories including names of staff, others described

distorted memories. Memories, both `real' and imagined,

have the potential to cause psychological problems after

discharge from ICU. Lloyd (1993) suggested that there was

a need for a greater awareness of the potential for problems

after discharge from ICU. He suggested that problems such

as post-traumatic stress syndrome were often unrecog-

nized and untreated in the community.

Although the power relations in ICU are well recog-

nized, this paper has shown that some thoughtless

remarks by staff were not only remembered by patients

and their families but also continued to disturb them. By

alerting nurses to the possible need for counselling after

discharge from ICU, there is no suggestion that nurses

within ICU should disregard the effect of their practice.

Ann remembered being washed in bed while nurses joked

about their social lives while Colin remembered being

naked. In these cases, it was not psychological therapy

after ICU that was required but greater awareness and

sensitivity within ICU. Butler (1995) suggested that it has

become too easy to be preoccupied with technology and,

as a consequence, neglect to take into account how the

patient feels. Hudson (1993, p60), on the other hand,

acknowledged that both technical expertise and empathy

were needed in ICU, though the emphasis of importance

was `dictated by the ever changing needs of each individ-

ual patient'.

References

Asbury A. (1985) Patient memories and reactions to intensive

care. Care of the critically ill 1(2), 12±13.

Ashworth P. (1984) Communication in an intensive care unit. In

Communication (Faulkner A. Ed.) Churchill Livingstone,

Edinburgh.

Baker C. & Melby V. (1996) An investigation into the attitudes and

practices of intensive care nurses towards verbal communica-

tion with unconscious patients. Journal of Clinical Nursing

5(3), 185±192.

Bergbom-Engberg I. & Haljamae H. (1993) The communication

process with ventilator patients in the ICU as perceived by the

nursing staff. Intensive and Critical Care Nursing 9(1), 40±47.

Butler K. (1995) Psychological care of the ventilated patient.

Journal of Clinical Nursing 4(6), 398±400.

Cassee E. (1975) Therapeutic behaviour, hospital culture and

communication. In A Sociology of Medical Practice (Cox C. &

Head A. Eds) Macmillan, London.

Estabrooks C. (1989) Touch: a nursing strategy in the intensive

care unit. Heart and Lung 18(4), 392±401.

Friedman B. (1992) Long-term follow-up of ICU patients. Amer-

ican Journal of Critical Care, 2, 115±117.

S. Russell


Green A. (1996) An exploratory study of patients' memory recall

of their stay in an adult intensive care unit. Intensive and

Critical Care Nursing 12(3), 131±137.

Hagland M. (1995) Nurse-patient communication in intensive

care: a low priority? Intensive and Critical Care Nursing 11(2),

111±115.

Hudson G. (1993) Empathy and technology in the coronary care

unit. Intensive and Critical Care Nursing 9(1), 55±61.

Jones C. & O'Donnell C. (1994) After intensive care ± what then?

Intensive and Critical Care Nursing, 10, 89±92.

Leathart A. (1994) Communication and socialisation (1): an ex-

ploratory study and explanation for nurse±patient communica-

tion in an ITU. Intensive and Critical Care Nursing 10(2), 93±104.

Lloyd G. (1993) Psychological problems in the Intensive Care

Unit. British Medical Journal 307, 306±307.

McKinley S., Nagy S., Stein-Parbury J., Bramwell M. & Hudson J.

(1997) Vulnerability and security in intensive care patients

Paper presented at the 22nd Annual Conference of the Austra-

lian and New Zealand Scienti®c meeting on intensive care,

Hobart.

Nievaard A. (1987) Communication climate and patient care:

causes and effects of nurses' attitudes to patients. Social

Science and Medicine 24(9), 777±784.

Parker H. (1984) Communication breakdown. Nursing Mirror

158(13), 37±39.

Raleigh E., Lepczyk M. & Rowley C. (1990) Signi®cant others

bene®t from preoperative information. Journal of Advanced

Nursing 15, 941±945.

Richards E. (1991) Vitamin C and cancer: medicine or politics.

MacMillan, Hampshire.

Salyer J. & Stuart B. (1985) Nurse±patient interaction in the

intensive care unit. Heart and Lung 14(1), 20±24.

Stanton D. (1991) The psychological impact of intensive therapy:

the role of nurses. Intensive Care Nursing 7(4), 230±235.

Tosch P. (1988) Patient recollections of their post traumatic coma.

Journal of Neuroscience Nursing 20(4), 223±228.

Turnock C. (1991) Communicating with patients in ICU. Nursing

Standard 5(15), 38±40.

Verity S. (1996) Communicating with sedated ventilated patients

in intensive care: focussing on the use of touch. Intensive and

Critical Care Nursing 12(6), 354±358.

Wallington-Smith S. (1986) Care of the multi-ignored patient: a

nursing perspective. Care of the Critically Ill 2(1), 28±29.



an exploratory study of patients' perceptions, memories and experiences of an intensive care...

Documents