/nh.siw and Ctilical Con Nursrng ( 1994) IO, 465-270 B Longman Group Ltd 1994

Learning from the experience of loss: people bereaved during intensive care

Brian Hall and Deborah A. Hall

In Hartlepool Intensive Therapy Unit (ITU) nurses have recently addressed the needs of relatives while they are visiting the department and afterwards during their bereavement. However in order to determine how best to improve nurses’ service we decided to ask those people bereaved their opinions about their experience in order to meet their requirements in the most appropriate way.

16 recently bereaved relatives were interviewed concerning a variety of areas, including information they received in the ITU, support they were given by nurses, how they coped after their loss, and suggestions for improvements.

Although this was a small study important areas for improvement were highlighted, and we have now been able to address these further in nursing service and make plans for future developments.

INTRODUCTION

The ITU at Hartlepool is a small 3-4 bedded area. Recently while auditing and updating standards of care within the ITU, we realised the need to review the service nurses provide for the relatives of dying patients and those bereaved.

Previous research has demonstrated that it is essential to provide emotional support for rela- tives, although it has mainly centred around loss in a hospice or Accident and Emergency depart- ment environment (Payne &James 1992, Yates et al 1990, Ellison 1990). Surveying the Hartlepool ITU staff and previous patients, we identified that

Brian Hdl RGN, ENB 100,931,998, Staff Nurse, Ddomh A. H&l BSc, RGN, ENB 100,931, Clinical Nurse Specialist, ITU, Hartlepool & Peterlee Hospitals NHS Trust, Hartlepool, UK.

(Requests for offprints to DH) Manuscript accepted 3 September 1994

a sitting room was needed which could ensure pri- vacy and minimal disturbance to visitors while being given (often distressing) information, to allow relaxation at a stressful time, and to facili- tate counselling and listening by staff. A side room was identified as suitably situated, and was recently refurbished with carpet, sofas, chairs and a coffee table, and provided with coffee/tea mak- ing facilities.

Additionally, ITU nurses have begun a bereave- ment follow-up programme, similar to that high- lighted by Anderson et al (1991)) and now send a card of condolence to bereaved relatives and assess whether to follow-up this initial contact. Assessment identifies relatives to be contacted at the Smonth period and later after 1 year (on the anniversary of their loved one’s death). Initial feedback from bereaved relatives has shown immense appreciation for such a simple act.

However, it appeared necessary to determine what the bereaved people themselves perceived

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266 INTENSIVE AND CRITICAL CARE NURSING

that they would have liked during their time in the unit and afterwards, during their bereave- ment. In this way, it was hoped to improve the ser- vice, and to provide (if possible) a follow-up ser- vice appropriate to their needs.

METHOD

It was decided to contact the next-of-kin of all patients who had died in the ITU following a stay of more than 12 hours, in the period between 1 and 3 years ago. In this way, it was hoped that the bereaved would still have memories of the ITU ‘experience’ and also would have had time to work through the painful period of their loss.

43 next-of-kin were contacted by letter, asking if they would be prepared to be interviewed by a member of the nursing staff. Along with this letter was a list of areas of discussion which would be covered (Table). The bereaved people were asked to complete a response form on which they could indicate their preference for the place of inter- view, either in the ITU or at their home, and when they would be available.

There were 27 responses, and of these 16 agreed to be interviewed. Of those who were unable to assist one expressed that ‘her deep sense of loss . . . (was) . . . still too fresh and painful’, two stated that their ill-health prevented their participation, and two initially had agreed but cancelled later on advice from siblings.

Of the 16 who were interviewed 4 came to the ITU, while 12 were interviewed at their own home.

14 of the bereaved were the spouse, one was a parent, and one was a child of the patient. Two of the interviews included either one or two adult children in attendance with the spouse.

INTERVIEWS

The areas of discussion at interview had been included with the initial contact letter so that the respondents would be able to consider these aspects prior to the interview. This, it was hoped, would enable individuals to decide whether they were willing and able to discuss their feelings.

Table Areas of discussion at interview

The information you received about your relative.

Time given by us for you to ask questions.

The amount of support given by us to you.

The amount of times you were asked to leave the bedside.

The opportunity to spend time with your relative.

How you coped after your loss.

Suggestions from you that might have made your experience less traumatic.

Two of those who came to ITU for the interview found ‘returning traumatic’ but also therapeutic to their resolution of grief, while three of those interviewed in their own homes stated that they would have been unable to return to ITU (and in one case, to the hospital). Before each of the interviews, the nurse ‘contracted’ with the inter- viewee the areas for discussion, a time constraint of a maximum duration of 1 hour unless a wish to continue the interview was expressed by the bereaved person, who could also terminate the interview at any time.

None of the interviews were terminated prema- turely, and in four cases, the interview exceeded the preset hour at the request of the interviewee. All interviews were carried out by the same nurse.

RESULTS

Information concerning the patient

Respondents were asked about the amount of information they had received while visiting ITU. It is important to consider how, when, where, and by whom, news is given (Speck 1991). 12 (75%) respondents gave positive feedback to this ques- tion. Comments included ‘I was given all the information I needed and at a level I understood’, and ‘we were given plenty of information throughout the period’. Some indicated that a consideration of their privacy was appreciated, especially when given important or bad news.

INTENSIVE AND CRITICAL CARE NURSING 267

However, during a particularly busy period, one respondent disliked being given what he consid- ered private information (an update on his wife’s condition) in the presence of ‘relatives and friends’. This gentleman also felt that he had been given only brief initial information following his wife’s admission. James (1982) states that first impressions count and may set the pattern for a relationship with all unit staff that may last for some time. Of all respondents, this gentleman gave us the most negative feedback concerning his experience with us. Ellison (1990) states that some staff keep relatives at a distance and prefer not to give them too much detail in order to reduce their own levels of stress. However, in the case of our own interviews, we could find no evi- dence concerning nursing staff which concurred with this claim. It should be pointed out, though, that we had previously recognised this as a poten- tial problem and had therefore encouraged staff to develop communication and listening skills both through internal seminars and with relevant external courses.

In the majority of cases (14,87.5%) nurses had provided respondents with much of the informa- tion they had received. Despite evidence that ‘rel- atives always want to see the doctor. It’s a cultural thing’ (Laurent 1991), we found that negative feedback on the way in which information was provided occurred only in those instances (2, 12.5%) when the consultant had been unaccom- panied by a nurse when giving ‘grave news’ and appeared indifferent. Buckman (1992) states that a situation of apparent indifference can arise when doctors try to end an interview quickly in order to reduce their own discomfort and sense of clumsiness.

Other comments concentrated on the intensity of the information that they were given. One respondent indicated that she had ‘a lot to take in when you first arrive’, while another highlighted that they had been given ‘lots of information . . . (but) . . . didn’t really hear a lot of it’. It is there- fore important that nurses maintain accurate records of what has been discussed with relatives in order that information given is precise and consistent and is not repeated later, unless of course it is necessary to reiterate certain informa- tion.

Time given for relatives to ask questions

Respondents were asked if they had been give opportunities by nurses to ask questions. 11 (68.75%) gave very positive feedback; they expressed both that they had been given every opportunity to ask questions and also that answers had been provided in an open and honest way. One respondent, however, felt that answers were sometimes medically orientated and difficult to understand. Buckman (1992) states that staff (explicitly doctors) may overuse medical jargon in order to give an air of efficiency and profession- alism to the proceedings. Despite this appearing to have been an isolated incident, nurses must continue to be aware of their way of responding to relatives and patients in the critical care environ- ment.

One respondent stated that she ‘did not have a lot to ask . . . my eyes told me all I needed to know’. To this lady the severity of her husband’s condition was evident; Halm (1990) states that ITUs are identified with the fact that the life of the patient is in danger and there exists an increased possibility that the oucome is going to be a negative one.

Support from staff

Respondents were asked about the amount of support which had been given by staff. In all cases, it was assumed that the interviewer referred to emotional support provided by nursing staff. Again, answers were very positive and included ‘very supportive’, and ‘very caring and under- stood the pain I felt’ and ‘nurses were excellent and seemed to understand what we were going through’. One lady expressed that the nursing staff were ‘truly wonderful. It’s as if they were of another world’. She compared the staff ratio to that of a busy acute ward from which her husband had been transferred. It seems that the ITU envi- ronment, where patients are usually cared for by a small team of nurses, one of whom is in atten- dance at all times, provides an environment which facilitates the development of a trusting and close relationship with patients and their visitors. Field (1993) takes this further, stating that concepts of

268 INTENSIVEANDCRITICALCARENURSlNG

partnership, intimacy and reciprocity come

together in the therapeutic encounter between

the nurse and the family. She states ‘Intimacy is a

two way process and allows the relatives and the

nurse to express their feelings with security and openness. However, intimacy can only be used

safely and effectively when the nurse has self

awareness. Reciprocity reflects the belief and

value that the nurse/family may be mutually heal-

ing. The success of such a relationship depends

upon the nurse having developed as a person and

as a member of the nursing team’ (Field 1993).

Openness such as this may fuel a heightened

emotional stress for the nurse. Maher (1989)

highlights such a source of stress and recom-

mends that nurses accept and facilitate the result-

ing need to express feelings with professional col- leagues. Experience here indicates that it is

important to encourage debriefing and support

groups among staff, especially during and follow-

ing stressful situations in ITU. Through being

able to discuss problematic situations and express

grief staff may be better able to face similar sce-

narios in future.

Requests to leave the bedside

One question to respondents was whether they

had been asked to leave the bedside during their

visits. This question was posed because for some

people any time spent together in ITU could be

their last shared moment together. Hayes (1990) states that patients and their families cannot be

considered as separate entities during illness and

that in times of crisis their bond is even more

close and should therefore be facilitated. 10

(62.5%) respondents thought that they had been asked to leave once or twice, while one lady had been asked on ‘lots of occasions’ during her hus- band’s 8 day stay in ITU. However, for all of these events visitors had been given explanations varying

from resuscitation, to doctor’s examination, to physiotherapy. On only one occasion did the respondent object to being asked to leave; in this case the respondent’s young son was having brain stem function tests performed by two doctors and they had asked for her not to be present. In the area of brain-stem death some health care work- ers feel that family involvement only increases the

distress of the family who are already grief

stricken (Crosby & Waters 1972)) while others dis-

pute this claim and highlight the positive aspect

of possible organ retrieval which helps the family

to come to terms with their loss more easily

(Savaria et al 1990).

Opportunities given to spend time with the patient

Respondents were asked whether they had been

given the opportunity to spend any private time

with their relative. Answers to this question often

depend upon whether the nurse, usually present

in the area, was perceived as invading this ‘pri-

vacy’ or not. Six (37.5%) respondents felt that

they had been given no privacy during their visits.

However, all but one of these stated either that it

‘did not matter’ or that they ‘did not mind’, or felt

that it was not possible ‘due to close monitoring’

or ‘you had to be there’. Five (31.25%) respon-

dents specified that they had been given ‘the

courtesy of privacy’, ‘all day’, or ‘every opportu-

nity’. In most of the above cases though, nursing-

presence was similar and, therefore, we must

assume that it is relatives’ perceptions of ‘privacy’

in ITU which are highlighted here.

Two (12.5%) spouses responded that they were grateful for being involved in the care of their

partner, while one mother stated that she appreci-

ated the few hours she was given alone with her dead son (but would have liked to have held him

for longer while he was alive).

It was during this line of enquiry that many of

the respondents became tearful. It seems that

memories of the final moments with a loved one remain clear and can cause people to feel the pain of loss more readily rhan other aspects of the (often prolonged) dying process. Murray Parkes

(1986) so succinctly talks of the need of health care staff both to consider their own feelings and to facilitate the needs of others: ‘The pain of grief is just as much a part of life as the joy of love; it is, perhaps, the price we pay for love, the cost of commitment. To ignore this fact, or to pretend that it is not so, is to put on emotional blinkers which leave us unprepared for the losses which will inevitably occur in our own lives and unpre-

INTENSIVE AND CRITICAL CARE NURSING 269

pared to help others to cope with the losses in theirs’.

How the bereaved coped

Respondents were asked how they coped after their loss. One lady spoke of the network of friends who helped following her husband’s death, while half (8) talked of supportive family members who for example, ‘talk about him con- stantly’, ‘were an enormous help’, and were ‘very supportive’.

Three (18.75%) respondents mentioned that they still very much missed their spouse and did not like being alone or without tasks to keep them ‘busy’. One lady spoke of her previous happy life (52 years of marriage) which sustained her in the present, while another spoke of her faith for sup port.

those interviewed in the ITU mentioned that the ‘interview room’ would have been more suitable’, ‘excellent’, or ‘I wish you’d had it then’. The set- ting up of this room was part of the process for improving our service, as mentioned in the intro duction.

Two (12.5%) respondents would have appreci- ated a more detailed, perhaps written, account of how their wives had died, while another would have liked to send a photograph to a relative who was unable to attend the department.

One respondent would have appreciated access for the disabled (this was available but not requested at the time), better signposting to the ITU, and more visitors at any one time (presently only two are allowed if the ITU is busy).

DISCUSSION

Suggestions for improvements to the service

Respondents were asked whether they had any suggestions as to what might have made their experience less traumatic. 10 (62.5%) mentioned a ‘counsellor’, ‘someone to talk to’, or ‘someone to express thoughts and feelings to’. Additionally, 25% (4) of respondents would have liked some- one to have given them advice on ‘organizing things’ (the funeral) or a ‘warning of the painful emotions’ which would follow.

Three (18.75%) expressed that the interview itself would have been therapeutic and that an earlier opportunity to talk would have been appreciated, too. Four (25%) respondents men- tioned that other family members might have benefited from a similar interview.

At one interview, with wife and sons of the deceased person present, respondents mentioned that this had been the first time they had openly discussed their own loss, and appreciated being given this opportunity (the interview).

Three (25%) of the respondents interviewed in their home felt that a more private area in which the family members could either relax, be given information, or have an opportunity to talk would have been appreciated, while three (75%) of

Despite this being a small study, a number of remaining areas for improvement have been identified.

Information-giving to relatives has a number of aspects which are important to consider. Information should be given in a private area and in clear and concise language which the recipient understands. The nurse should be available and willing to answer questions later. Additionally, we find that a written record of all informative com- munication with relatives is indispensible for ensuring continuity of care for the relatives; and also try to ensure that a nurse is present whenever a doctor talks to them. In this way, nurses can doc- ument what has been said to the relatives in a lan- guage they understand. At this time too, emo tional support is of importance.

In order for staff to provide appropriate sup port with communication and listening skills, it is important that training and education are geared to meet service needs; as well as recognising that staff, too, should have support from peers in order to help them cope with the difficulties they encounter daily.

In ITUs nurses need to facilitate open visiting for relatives. Each patient is viewed as an individ- ual and it is time to reahse that relatives, too, do not act collectively. Few of the respondents said

270 INTENSIVE AND CRITICAL CARE NURSING

that they had not wanted to leave the bedside References while treatment was enacted; but one cannot

assume that the majority would have left the area had they been given a choice.

Privacy for relatives should also be given consid- eration; nurses cannot meet relatives’ needs unless their views are known.

Respondents identified that they would have

liked both practical advice and information con-

cerning the death and funeral of their loved one,

as well as a facility to talk with someone about

their feelings.

package for nursing staff concerning the dying

process and bereavement. Information includes

We have devised a structured and informative

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Buckman R 1992 How to break bad news. Papermac, Basingstoke, p6

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details on a variety of aspects, from last of&es, to

coroner involvement in a death, to outside sup

port services available for relatives. The aim is to

ensure, therefore, that relatives are given every

possible assistance in order for them to deal with

their initial bereavement, and thereby hopefully

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40-43

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and provide support networks not only for the rel-

Our own research indicates that follow-up sup-

port would be of benefit to the bereaved. Within

the Hartlepool ITU there is the potential

prospect of a bereavement counsellor post. It is

evident from previous studies (Duke 1990, Mason

1992)) however, that there are a variety of ways in

which bereaved people can be supported. If nurs-

es address the issues which have been highlighted

Laurent C 1991 Finding the right person for thejob. Nursing Times 87(12): 27-28

Maher M E et al 1989 Organ donation: a nursing g;;y6;tive. Journal of Neuroscience Nursing 21(6):

Mason P 1992 Allowing for loss. Nursing Times 88( 2) : 14-15

Speck P 1991 Breaking bad news. Nursing Times 87(12):

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Payne Set al 1992 Perceptions of bereavement support. Senior Nurse 12(3): 44-45

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