lntemivt and Oilid CanNursing (1994) 10,89-92 Q Longman Croup Ltd 1994

After intensive care - what then?

Christina Jones and Claire O’Donnell

1 The total dependence that, from necessity, must be the lot of an intensive care patient can lead to a state of learned helplessness as they recover. In addition, the physical frailty of these patients further confounds their first attempts at independence. It is at this stage that patients need clear information about the road ahead and in a form that they can refer back to as needed when they are discharged to the general wards and then home. As many intensive care patients have little or no memory of the intensive care unit (ICU) afterwards and only gradually come to understand how ill they have been, the provision of an information booklet on discharge to the general wards seemed likely to be the most sensible approach. The booklet addresses topics such as transfer to the wards and possible problems patient might face during their convalescence. In addition commonsense advice is offered to help patients regain their independence and control of their own health. The information is presented in a clear concise way and the booklet is liberally illustrated with cartoons. Relatives are encouraged to read the booklet as well and provisional results have shown it to be well received by both patients and relatives.

THE INTENSIVE CARE ENVIRONMENT AND ITS EFFECTS

The abilities to control and predict a stressful situ- ation are important factors in determining an individual’s ability to cope successfully (Krantz 1980). In order to feel in control, one must be able to exert some measure of influence over events, whilst the ability to predict requires fore- sight to anticipate the situation and to prepare accordingly. The severity of disease which prompts admission to critical care units means

Chrbtina Jorm RGN, MPhil, Research Nurse, Claire O’Donnell RGN, PhD, Sister, Intensive Care Unit, Whiston Hospital, St. Helens and Knowsley Hospitals, Prescot, Merseyside L35 5DR, UK

(Requests for offprints to CJ) Manuscript accepted 6 September 1994

that in these patients, both facilities are signifi- cantly diminished or absent. Control is perforce handed over to medical and nursing staff once decisions are required in areas in which the patient has no experience or information. Prediction becomes impossible as situations progress inexorably further from anything that can be recognised as the norm. In order to make sense of the environment in which they suddenly find themselves, i.e. an intensive care unit (ICU), patients must use all of their senses at a time when their abilities to communicate and interpret events may be almost totally disrupted. Immobilisation by equipment and the inescapable discomfort of cannulae and tubing (Turner et al 1990, Ashworth 1980) mean that for ICU patients, the usual routes by which we orientate ourselves - sight, touch and hearing - are all impaired, whilst drugs and pathology may reduce or distort any

89

90 INTENSIVE AND CRITICAL CARE NURSING

information that is received (Riely 1973, Wallace et al 1988).

It has been argued (Seligman 1975, Krantz 1980, Walding 1991) that when exposed to a series of uncontrollable events in which response appears futile, a learned state of helplessness develops and a cycle of anxiety and depression is begun in which uncontrollability becomes the rule and personal autonomy is abolished.

Patients’ response

This situation will be recognised by those working in critical care areas. Most will be able to recall patients who are recovering from life-threatening illness, only to become seemingly obsessed by minutiae in their attempts to regain some small degree of control in an uncontrollable world. At the same time, they become aware that they are in the company of other patients who may be more acutely ill and require a greater degree of physical care from staff, and may feel themselves to be in competition with them. The physical frailty which is manifest in these patients (Grifftths 1992) fur- ther confounds their attempts to regain indepen- dence. Most are unable to get out of bed unaided, the few steps from bed to chair are exhausting and profound muscle weakness means that they require assistance with almost all activities. Many have no recollection of the severity of their illness and consequently cannot find a cause for their weakness, with the result that the situation quickly becomes inexplicable and worrying to them.

The final straw

The cocktail of psychological helplessness, physi- cal debility due to severe illness, anxiety and depression requires two more ingredients to make it explosive, namely the removal of both the environment that has become familiar and the staff on whom the patient has come to rely and trust. It is hardly surprising then, that the prospect of transfer to a general ward may be far from the milestone in recovery that the ICU staff perceive it to be, and is rather a moment of dread for most patients and their families (Bokinskie 1992).

HOW TO HELP?

It has been shown in a number of studies that information given to patients and their relatives can reduce anxiety (Thompson 8c Cordle 1988, Raleigh et al 1990, Thompson dc Meddis 1990). Thompson and Cordle (1988) found that wives of first time myocardial infarction patients benefited from a booklet that contained advice and infor- mation about the home care of the patient. In a study of first time myocardial infarction patients, structured counselling by coronary care nurses was found to reduce the anxiety experienced by the patients compared to routine care, both while the patients were in hospital and after their dis- charge from hospital (Thompson & Meddis 1990). In addition the patients’ wives also benefit- ed from the provision of information with the patient and the spouse being counselled together where possible (Thompson & Cordle 1988). Similarly, in a study involving the spouses of patients having coronary artery bypass surgery one of the major sources of stress reported by the patients’ spouses was the lack of information given to them about the patients’ experience in hospital and the course of their recovery (Gillis 1984). In a similar vein, stroke patients and their carers felt that there was a need for more informa- tion about the care problems associated with strokes (McLean et al 1991), and women under- going surgery for gynaecological cancer reported that they would have liked more information about the physical, sexual and emotional after- effects of their surgery (Corney et al 1992).

High levels of anxiety have been shown to inter- fere with the retention of information (Ley & Spelman 1967, Ley 1987) and a number of strate- gies are available to increase the amount of infor- mation remembered. Ley (1987) showed that the amount of medical advice forgotten by patients had a linear relationship to the amount presented, and that the amount forgotten could be decreased by using simpler language, explicit categorisation where the categories are announced, repetition and concrete advice statements. As KU patients frequently have poor or no memories of their stay in an ICU (Compton 1990), the provision of a booklet following Ley’s guidelines seemed the

most sensible way of providing information to the

patients. There are, already, many leaflets cover- ing illnesses such as asthma, hypertension or dia- betes. It is perhaps a reflection of the heteroge- neous population of ICU patients that the matter of a similar booklet, about the possible problems patients might face on transfer to the ward, seems

to have not been extensively addressed before.

Part of the solution

The design of the booklet produced for the

Whiston ICU reflects the findings of Ley (1987) and the conclusions drawn by Teasdale (1993). Commonsense advice is given in each section with the emphasis throughout the booklet on what the

patients can do to help themselves. This follows Teasdale’s (1993) suggestion that the most effec- tive technique in reducing anxiety, is to combine

factual information with advice which enables the patients to be proactive in, rather than reactive to,

their situation. This takes the form of encourag- ing the patients to take part in controlling events or to control how they view events, to some

degree, by concentrating on the positive aspects of a situation - the ‘reframing’ techniques described

by Ridgeway and Matthews (1982). Many of the problems these patients face are

likely to persist for some considerable time, even

after returning home (Jones et al 1993a), and because of this it was felt appropriate that the information booklet should deal not only with the immediate problem of transfer to the ward but also with the longer term problems that patients and their relatives are likely to meet during the convalescent period. The potential problem areas dealt with in the booklet are shown in the Table.

The booklet is small, light and liberally sprin-

kled with cartoon illustrations to enhance the ‘readability’. It is routinely given to all patients, ideally the day before their discharge to the ward. The response from patients and relatives to the booklet has been favourable although numbers are too small as yet to allow a more formal assess- ment. It should be recognised, however, that this booklet can only form part of the ‘follow up’ care that KU patients require.

INTENSIVE AND CRITICAL CARE NURSING 91

Table 1 Potential problem areas dealt with in the booklet

Section Contents

Going to the ward

Tiredness and exercise

Sleeping

Mobility

Eating normally again

Changes in mood

Family and relationships

Explains the differences between wards and ICU and stresses the positive aspects

Details of simple exercises to loosen stiff joints and build stamina together with a timetable and advice on when to stop

Stresses that sleep disturbance is common, advice on how to promote sleep

Emphasises the temporary nature of problems 1

Coping strategies to deal with alterations in taste and anorexia

Reassurance that this is normal and stresses the setting of realistic goals to boost morale. Deals with changes in appearance, coming to terms with what has happened and lists help agencies and self-help groups

Covers possible changes in family dynamics and sexuality

The more complete picture

Compton (1990) showed that 1 year after dis-

charge many patients remembered very little about intensive care, and that they had only learnt how ill they had been while they were recovering.

These patients felt the need to reconstruct the experience by asking their family and friends about what happened, and also reported feelings that the recovery phase was the most psychologi- cally stressful period of their illness. Some patients had reported spending a lot of time and energy trying to understand what had happened to them. Benzer et al (1983) found that relatives reported feeling that the patients behaved in a dependent manner, were more frequently depressed and seemed more obstinate than before their illness with sudden, unpredictable

92 INTENSIVE AND CRITICAL CARE NURSING

mood swinRs. The patients themselves felt that Corney R, Everett H, Howells A, Crowther M 1992 The

they avoided company and showed less affection

to their partner. It has become apparent from an

out-patient clinic run specifically for ex-intensive

care. of patients undergoing surgery for gynaecological cancer: the need for information, emotional support and counselling. Journal of Advanced Nursing 17(6): 667-671 . I

care patients that there is often a gap in the care Gillis C 1984 Reducing family stress during and after

of these patients (Griffiths 1992) which begins coronary artery bypass surgery. Nursing CIinics of North America 19(l): 103-112

once the natients are discharged from intensive

Work to date suggests that visits from ICU staff

care to the’ir referring speciality and care from the ”

and the attendance at ICU follow-up clinics can

ICU nurses or doctors ceases.

benefit both staff and patients. Valuable physio-

logical and psychological data (Jones et al 1993b)

can be gained about the process of convalescence

and an opportunity is provided for early referral

Jones C,GrifIiths R D, Macmillan RR, Palmer T E A 1993b

Griffrths R D 1992 Develoument of normal indices of recovery from critical iliness. In: Rennie M J (ed)

Psychological problems occurring after intensive care.

Intensive Care Britain. Greycote Publishing, London, pp

British Journal of Intensive Care 4(2): 46-53

134-137

J ones C, Hussey R, Griffnhs R D 1993a A tool to measure the change in health status of selected adult patients before and after intensive care. Clinical Intensive Care 4: 160-165

Riely W F 1973 Critical care psychiatric syndromes. Heart for snecialist treatment where necessary. Further and Lung 2 ( 1) : 54-57

1

benefits to patients accrue from the opportunity it Krantz D Sj980 Cognitive processes and recovery from

gives them to ‘fill in the gaps’ with the staff who heart attack: a review and theoretical analysis. Journal of Human Stress 6: 27-38

have the most intimate knowledge of their illness Ley P, Spelman M 1967 Communicating with the patient.

and to voice their concerns about convalescence.

The information booklet forms a vital first part of

this complete package of aftercare for patients

and their relatives, helping them to cross the first

bridge to home and recovery.

Acknowledgements

The authors are very grateful to their colleagues on the intensive care unit for their expert and invaluable conuibu- tions to the contents of the booklet, to the departments of physiotherapy and dietetics for their specialist advice and to Dr R. D. Griffths for his advice on the manuscript. CJ is supported by the Jules Thorn Charitable Trust.

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