Post-intensive care interviews: implications for future practice Valerie Sawdon, lan Woods and Michael Proctor

Valer ie Sawdon RN, RM< ACCN, Staff Nurse

lan Woods MB, ChB, FRCA, DCH, Director

Michael Proctor BSc(Hons), RN, ENB 100, Clinical Manager, Intensive Care Unit, York District Hospital, Wiggington Road, York YO3 7HE, UK

(Requests for offprints to VS) Manuscript accepted 9 September 1995

The measurement of outcome from intensive care, including the long-term physiological and psychological effects of disease and intensive therapy has tended to receive scanty attention. Little consideration has been given to the implications this may have for the patients, relatives and for future practice.

Patients were interviewed in their own homes after 6 months of recovery, to allow freedom of expression and comfort within their own environment (territory). This study demonstrates that data generated by face-to-face interviews can be of immense importance to intensivists in assessing the effectiveness of services and promoting changes in clinical practice. It also shows a need for a long- term follow-up service encompassing community and hospital.

I N T R O D U C T I O N

Until recently, mortality rates were the only indicators of success available to intensivists. The long-term physiological and psychological effects of both the disease and intensive therapy were not included in the measurement of effec- tiveness of services provided. However, within the last 10 years, measurements of outcome influenced by quality of life (QOL) have been considered important in evaluating economies, human costs and benefits (Patrick et al 1988). As patients are also influenced by their ability to fulfil their own expectations, their perceptions are crucial in determining both the use and

impact o f health and medical services (Hopkins 1992). The measurement of outcomes tends to be judged in medical terms, with little consid- eration of the implications for the patient and relatives and future practice. Most follow-up studies have utilised self-completed question- naires, which have been suggested as being no more than a system which forces patients to express themselves in the language and classifi- cations of the economist (Hopkins 1992). In this study the patients were interviewed in their own homes, thereby allowing them, and their relatives, freedom of expression within their own environment.

M E T H O D S

Approval from the hospital ethical committee was sought and agreed. 100 patients admitted consecutively to the Intensive Care Unit (ICU) at York District Hospital were included in the outcome study. All categories of patients were included. O f the original 100 patients, 20 died in the ICU. For the remaining patients who survived their I C U stay, a consent form and questionnaire on pre-morbid condition were completed, adapted from the Whiston Hospital Questionnaire (WHQ) (Jones et al 1993), using a semi-structured interview to assess quality of life for the 3 months prior to their admission to the ICU. The individual patients were approached in the wards during their pos t - ICU hospital stay, when their improving health enabled them to make an informed decision regarding participation in the study. Earlier studies have indicated that health status 6 and 12 months after discharge are very similar (Le Gall et al 1982, Cullen et al 1984). It was there- fore decided to follow-up the patients at approximately 6 months after discharge. To avoid unnecessary distress to relatives, the General Practitioners (GPs) of participants in the study were contacted and their health veri- fied. Any patients who had moved were fol- lowed up through the Family Health Committee 's GP registration. Patients living outside a 30 mile radius of the hospital were sent questionnaires by post and were inter- viewed by telephone. The remaining patients were contacted to ensure they still wished to participate in the study.

A Profile of Mood States (POMS) (McNair et al 1981) questionnaire was sent to the patient 1 week prior to interview, to be completed without the presence of the researcher. Semi- structured interviews were then conducted by the researcher in each patient's own home using a modified questionnaire, encompassing the following validated instruments:

Intensive and Critical Care Nursing (I 995) I I, 329-332 © 1995 Pearson Professional Ltd

330 Intensive and Critical Care Nursing

Nottingham Health Profile (NHP) (Hunt et al 1986), Functional Limitations Profile (FLP) (Bergner et al 1981) and Perceived Quality of Life Scale (PQOL) (Patrick et al 1988). Patients who did not respond were contacted again by letter. Qualitative data collected during the interviews were analysed using a system of the- matic content analysis as described by Taylor & Bogdan 1984).

Description of sample

The sample of 100 patients admitted consecu- tively included 20 who died in the ICU. 80 patients were discharged to the wards. From this group 8 died within 2 months and 1 within 6 months of discharge from the ICU. Of the remaining 71 patients, 14 declined to partici- pate in the study. Fifty-seven patients and rela- tives were interviewed: 26 female, 28 male and 3 children. The ages ranged from 4 months to 94 years, and the patients' disorders included all the specialities treated in the unit.

DISCUSSION

Disturbances

Intensivists have been aware of the phe- nomenon of ICU psychosis within the ICU setting for many years (McKegney 1966). However, it has been suggested that the conva- lescence of patients at home is the most psy- chologically stressful phase of critical illness (Lloyd 1993). Little consideration has been given to how patients cope psychologically after intensive care treatment, or to whether their experience in ICU has had any long-term effect on their state of mind (Bertrand 1987). Of the patients studied, 16 patients had no recall of their ICU stay. However, further probing appeared to stimulate the sub-con- scious memories of a few and produced vague recollections, which the researcher could relate to the ICU. Diagnostic criteria for Post Traumatic Stress Syndrome (PTSD) include the effort to avoid thoughts or feelings associ- ated with the trauma (Bertrand 1987). Of the patients who had recollections, 27 referred to discomfort or psychological disturbance while in the ICU. Memories of discomfort centred around equipment, particularly endotracheal tubes, nasogastric tubes, pain and medical pro- cedures. The degree of psychological distur- bances varied in magnitude from one patient's perceived view of alterations in his circadian rhythms, to distressing recurrent dreams of a persecutory nature. Five patients were still able to remember vividly their own nightmare or

dream at 6 months after discharge from the ICU. The level of the persecutory nature of phenomena fluctuated; but all were terrifying to the patients at the time.

POMS, which was used to assess the patients' psychological profile, correlated well with the patients' reactions and description of themselves conveyed at interview. Vigour/activity and fatigue/inertia were the factors which scored the highest, followed by anger/tension. Environmental factors are known to play an important role in acute functional psychosis which occurs in an ICU (Lloyd 1991). This particular study did not address this problem specifically, but high- lighted an area whereby follow-up could prompt alterations in practice. One family stated the need to improve the environment for children, producing a familiar setting for comfort and normal stimuli, as found by Coles (1987).

Education and support network

Health education opportunities within the ICU location are limited by the patients' level of consciousness, receptiveness and ability to retain information. In addition, the convales- cent phase and discharge to the community from the referring specialities excludes ICU nursing and medical intervention, unless con- tinuing information is supplied (Jones & O'Donnell 1994).

Once discharged, the patient is reliant on long-term follow-up from the community sup- port network and speciality out-patient clinics. In the study there were found to be good levels of support initially, particularly with home assessments; however, long-term support and advice networks were sadly lacking for this group of specialist clients.

It was noted that five patients required fur- ther equipment, financial and social services intervention, and had negligible knowledge of the services available to them, or how to secure these services. Of the 19 who had seen their GP or practice nurse within the 6 months since dis- charge, 17 had failed to mention problems which might have been easily rectified with health education or the aid of a support group facility.

The knowledge gained from the patients and their families gave the researcher the ability to advise other patients with similar experi- ences and to reassure patients on their medi- cally unrealistic expectations of returning to 'normal' health within a short period of time Clones et al 1994). The early detection of inten- sive care related complications and explanation and treatment of them may contribute signifi- cantly to the patients' rehabilitation.

Post-intensive care interviews: implications for future practice 331

Family dynamics

As PTSD, and the level of support required by patients following intensive care, is now becoming a more accepted factor in the recov- ery phase, emphasis also needs to be placed on the family unit as a whole. The initial trauma to the relatives, due to the patients' risk of death and the ICU environment, may be worsened by alterations in financial security and daily routine. At discharge these areas of stress con- tinue to exist with the additional strain of changes in lifestyle and role alteration.

During the first 6 months following dis- charge of a family member from ICU, some degree o f role reversal occurred with nine of the family units, increasing the burden on other family members. Not surprisingly a need was identified for partners to receive support of some nature, either professionally from medi- cal, paramedical staff or informally from a sup- port group.

The Adaptation-Level Theory suggests that patients evaluate their lives more positively when confronted by distressing or life-threat- ening experiences (Brickman & Campbell 1971). Patients frequently adjust to lower levels of health sustaining their satisfaction with life; but adaptation by families and friends to this may prove harder to achieve.

Monitoring tool

Unless ICUs have follow-up facilities their only indication of outcome is re-admission or visits by ex-patients and relatives to ICU, which is at best unreliable. Follow-up and feedback from the patients and family can pro- vide data on mortality and health status after discharge from the hospital and ICU; they can also act as a monitoring tool. The long-term sequelae of treatment and invasive techniques may highlight areas where further study and research are indicated.

Percutaneous tracheostomy, a less invasive alternative to conventional tracheostomy, can now be used as the technique of choice for elective tracheostomy in I C U patients. The only long-term clinical follow-up study of per- cutaneous tracheostomy has showed a low inci- dence o f complications (Ciaglia & Graniero 1992); but further study is required to investi- gate use of this technique as a substitute for conventional surgical tracheostomy in other settings and perhaps as an alternative to pro- longed translaryngeal intubation as well (Hazard et al 1991, Heffner 1991).

Scarring from invasive monitoring (arterial and central lines) was noted in varying degrees in 24 o f the patients, with one young female patient resorting to wearing a scarf for 5

months as an internal jugular puncture scar caused considerable distress. In accordance with the Patients' Charter, patient satisfaction with the level of service and care provided can usually only be audited following discharge from ICU, due to the nature of the clients treated. The researcher found a small number of patients who were dissatisfied with aspects o f care received. It is hoped these complaints can be dealt with to mutual satisfaction without recourse to formal channels.

Referral to the wards from an ICU is a diffi- cult time for patients and relatives (Jones & O'Donnell 1994) and continual monitoring o f this process will ensure a smooth transition. Within the unit studied there evolved a need for intermediate care, as some patients felt they had been transferred to a general ward when they still required high levels o f nursing care.

Evaluation

For evaluation to be effective, there needs to be a review of the severity of illness, treatment and care received, and communication skills. Evaluation for staff and patients can produce both positive and negative aspects, the aim being to gain enrichment from the positives and to view the negatives as a learning process for change. A positive statement from one patient was, 'I was pleased to be able to look at myself from a sort of outside view and realised how much I had improved in my mental atti- tude and physical condition during and after the six months since I was in the Intensive Care Unit'. Negative comments revealed that com- munication skills were found to be, on occa- sions, pitched at the wrong level for the patients and their families, as they had obvi- ously misunderstood reasons for admission to the ICU and the degree of severity o f the ill- ness.

Long-term friendships can be forged between staffand families from the knowledge of what they have been through and the sup- port received at a time when they are at a low point psychologically. Follow-up care has a dis- tinct advantage in continuing this friendship and promoting a sense o f identification; as one patient explained 'it's nice not just to be a num- ber'.

Staff morale and job satisfaction have many variants which determine overall job satisfac- tion. Numerous studies have found that achievement of the task or success in problem- solving is an important determinant o f task and work satisfaction (Turner et al 1962, Vroom 1964, Locke 1965, Herzberg 1966).

One of the enriching areas of nursing is the sense of achievement in returning a patient to the level of health they perceived as being

332 Intensive and Critical Care Nursing

good. This sense o f a c h i e v e m e n t can also be

e n h a n c e d i f the re is defini te feedback f rom

some source (another pe rson or the task itself)

regard ing the degree o f a c h i e v e m e n t a t ta ined

( H a c k m a n & Lawler 1971).

RECOMMENDATIONS FROM THE STUDY

T h e in fo rma t ion ga ined f rom the s tudy has

already p r o m p t e d change w i t h i n the I C U . A

s ide room used for paediatr ic pat ients has b e e n

al tered to p rov ide an e n v i r o n m e n t appropr ia te

for chi ldren; no t on ly for the pat ients bu t also

for parenta l and sibling comfor t . This change

will also p rov ide s t imula t ion for ch i ld ren w h o

are awake whi le n e e d i n g care. A H i g h

D e p e n d e n c y U n i t was o p e n e d at the b e g i n n i n g

o f 1995 and is used as an in te rmed ia te facility b e t w e e n I C U and the wards.

A majo r po ten t ia l l o n g - t e r m change is the

concep t o f the O u t p a t i e n t Cl in ic w h i c h is in

the p l ann ing stages. T o aid in the col lec t ion o f

the huge a m o u n t o f data requ i red to fo l low-up

patients , a clinical i n fo rma t ion system is cur -

rent ly b e i n g evaluated for purchase.

CONCLUSION

This s tudy demonst ra tes tha t the data genera ted

by face- to-face in terv iews can be o f i m m e n s e

i m p o r t a n c e to intensivists in assessing effective-

ness o f services, audi t ing and p r o m o t i n g

changes in clinical practice. O f equal i m p o r -

tance is the availablity o f a suppor t system for

the pat ients and relatives, to enable t h e m to try

to reach a desired level o f hea l th w i t h the op t i -

m u m suppor t required .

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