Follow-up services and the development of a clinical nurse specialist in intensive care

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Follow-up services and the development of a clinical nurse

specialist in intensive care Jess Hall-Smith, Carol Ball and John Coakley

Jess Hall-Smith RGN, ENB 100, ENB 998, Foundation in Counselling Skills, Sister, ICU John Coakley MD, FRCP,Consultant Physician, ICU, Homerton Hospital, Homerton Row, Hackney, London E9 6SR, UK Carol Ball MSc, Dip NEd, Dip N, RGN, ENB 100, Lecturer in Intensive Care Nursing, St Bartholomew's School of Nursing and Midwifery, City University, 20 Bartholomew Close, London ECIA 7QN, UK (Requests for offprints to JH-S) Manuscript accepted 19July 1997

There is little information available regarding quality of life following critical illness. The consequences of a stay in an intensive care unit (ICU) can result in considerable psychological and physical morbidity. A t the Homerton Hospital, London, UK an intensive care follow-up outpatient clinic was established to ascertain patients' experiences after discharge from the ICU. This exploratory study examines narrative data collected from 26 patients by means of unstructured client-led interviews. Themes are derived that have implications for staff, patients and relatives. The findings suggest that patients experience a variety of psychological and physical symptoms. Patients experienced vivid dreams, flashbacks, relocation and convalescent stress as well as profound tiredness and weakness. These are consistent with previous research findings. New themes were identified which suggest that mood changes, inability to cope, the need to talk about their ICU experience and indistinct memories of the ICU made recovery at home difficult for both the patients and their families. As a result of these findings, the role of a clinical nurse specialist has developed in order to improve liaison between and within departments, the hospital and the community. Future research will aim to focus on the role of the critical care/community liaison clinical nurse specialist and in improving outcomes through the use of action research.

IntenslveandCrmcalCareNursmg(1997) 13243-248 © 1997HarcourtBrace& CompanyLtd

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INTRODUCTION The impact of critical illness upon quality ofhfe following admission to intensive care has, until recently, received little attention. Historically 'a stay in intensive care was deemed a success if the patient survived to go back to the ward, even if he or she did not survive to go home' (Waldmann & Gaine 1996 p 118). Today the aim has changed, and 'the success of intensive care is not only to keep people alive, but also to restore them as close as possible to their previous level o f health' (Jones et al 1993 p 164). However, the quality of survival remains difficult to measure or predict, despite the availability of tools and studies to help with outcome assessments. Predicting the quality o f survival can be confounded by difficulties in obtaining accurate information about indiwduals' premorbid states of health and social functioning. Furthermore, the reliability of this information remains questionable when using a relative as a reporter upon previous health status (Jones et al 1993). Quality of survival also varies between individuals and how they interpret and give meaning to their experiences o f intensive care (Compton 1991). To illustrate this further, 'patients who are in, or have been through, a life-threatening illness may view their pre-morbid health in a different light' (Jones et al 1993 p 160). Recognition that 'convalescence of patients at home is the most psychologically stressful phase of critical illness' (Lloyd 1993 p 458) presents enormous implications concerning spheres of responsibility when discharging a patient home following intensive care. In light o f recent government initiatives for provision o f 'seamless care', this would seem an ideal time for the development o f intensive care followup services and the creation o f an intensive care clinical nurse specialist position with responsibility for improving patient outcome. A follow-up clinic for intensive care patients was established to explore their perceived quality of life and to examine their experiences following critical illness. This article reports on the development of the service to date, discusses preliminary findings and outlines prospective ideas for future research and development.

RESEARCH AND METHODOLOGY The clinic began, in June 1994, to assess the long-term effects on survivors of intensive care in an exploratory study. Data were collected from 1 June 1994 to 1 October 1996. Due to

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the high number of intensive care admissions each year and the limited resources available, only patients who stayed longer than 5 days in the intensive care unit (ICU) were invited for follow-up, with the intent to follow up all patients if resources allowed at a future date. The clinic was held two or three times each month. Patients were invited by letter to attend alone or with relatives 3 months after hospital discharge. This time frame was chosen to allow patients time to re-establish a normal domestic routine following the episode of critical illness and to develop a realistic impression of life at home. During this period, 130 patients were admitted to the I C U for more than 5 days, o f w h o m 43 died subsequently (Table 1). O f the remaining 87 patients, 38 were not followed up for various reasons: 1. Extra-contractual referrals for I C U treatment. These were difficult to follow up because of long travelling distances and the consequent financial implications for patients. 2. Follow-up by other specialities, for example, patients with cancer, sickle-cell disease, chronic respiratory disease or HIV infection. For these patients, their time in intensive care represented only a small part of their hospital stay, and problems were thought to be due to disease progression rather than related to their critical illness. 3. I C U follow-up was deemed inappropriate or impossible, particularly for patients of no fixed abode and for patients who had sustained hypoxic cerebral injury or had preexisting organic cerebral changes. In the first instance it was not possible for the I C U chnic to follow up this group of patients in the initial data collection phase, due to resource constraints. However, it is acknowledged that this would be an important group to follow up, and in the future when certain criteria arise from data currently being collected, these patients will be included in further research. Appointments were sent to the remaining 49 patients, of w h o m eight cancelled because

Table I The I~otalnumber of patients with an ICU stay longer than 5 days from I June 1994 to I October 1996 and those invited for ICU follow-up

they felt they would not benefit and a further 15 failed to attend their appointments; 26 patients attended their first appointment. Narrative data were recorded from each interview and themes were derived. The small sample size represents only a percentage o f those who might have attended. At present there is no way of knowing whether those who did not receive I C U follow-up were more or less upset than those selected; however, reasons for not attending will be addressed in the second phase of this project and will be discussed in further publications. Each appointment was planned to last for an hour, with the consultant and I C U sister conducting an unstructured, client-led interview. This decision was based on the notion that patients' experiences were unique and that to enforce any structure on the interview would allow the professional agenda to dominate. It was felt that face-to-face interviews would be o f more value than questionnaires when assessing qualitative issues. Others have agreed that 'face-to-face interviews can be o f immense importance to intensivists in assessing effectiveness o f services, auditing and promoting changes in clinical practice' (Sawdon et al 1995 p 332). From the interviews, it was agreed by the interviewers that the data fell broadly into two major areas: (1) psychological issues; and (2) physical problems (Table 2). Validity of the thematic analysis was assured through the use o f an independent coder. This took the form o f a clinical auditor who supported the themes derived. The themes derived in this study were found to support previous research findings (Griffiths 1992, Cutler & Garner 1995, Waldmann & Gaine 1996).

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PRELIMINARY FINDINGS RECOMMENDATIONS

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At this stage in the I C U follow-up service development, the aim was to examine broadly the themes drawn from the interview data, and to consider the implications of these findings for clinical practice. P s y c h o l o g i c a l issues Dreams

Patient population

Total number of patients

Patientswith an ICU stay >5 days Died Not followed up

Did not attend appointment Cancelled appointment Attended appointment

130 43 38 15 8 26

In Table 2, it may be seen that 14 of the 26 patients who attended the chnic recalled dreams of an unpleasant or surreal nature, often remembering themes o f being trapped, feehng misplaced or involvement in a disaster. It has become evident from the clinic that most are reluctant to share these dreams with hospital

Development of clinical nurse specialist in ICU

Incidence from group of 26

Psychological problems No memory of time in ICU Dreams relatingto time in ICU Mood changes Carer stress and need for advice and support Need to talk about ICU events Unable to cope Stress related to adjusting to life at home following critical illness Unable to look forward Flashbacks Relocation stress on transfer from ICU to the ward

15 14 II 10 9 9 8 8 5 5

Physical problems Tired/weak/shaky Remaining physical problems Poor concentration/memory Poor sleep

14 12 8 3

staff and consequently struggle to cope at home with bizarre or frightening flashbacks, dreams or memories that they cannot make sense of alone. Historically, post-traumatic stress disorder (PTSD) has been recognized in survivors of accidents, disasters and warfare and characterized by a series o f reactions that arise after the person has experienced an event outside the range of usual human experience. In this case, dreams and nightmares represent real or symbolic reminders of their time in the ICU, and occur as survivors of critical illness rationalize what their own personal disaster meant to them. I C U follow-up services could provide an important forum for expression of experiences relating to intensive care, thus helping to clarify events and make sense o f each person's experience. Chandler wrote, W e may not be able to prevent stress or distress, but we can alter the intensity and duration o f stress-related trauma by naming our demons, daring to struggle with them, and by creating healing communities. (Chandler 1992 p 88) Six of our patients described their dreams as nightmarish hallucinations that were vividly remembered and deeply upsetting for the individual. These findings have prompted us to examine the choice o f sedation. Analysis o f patients' drug charts revealed an inconsistency in administration of sedative agents, resulting in the use o f a large mixture o f drugs. Propofol is now rarely used due to unpleasant psychological side-effects. Currently, morphine and midazolam are used to sedate the majority o f patients with the addition of enteral anxiolytics such as lorazepam and haloperidol to reduce potential stress. A sedation scoring system has been introduced to facilitate achieving the optimum sedative state and to promote consistency in the

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choice o f drugs. At this stage, the incidence of nightmares cannot be measured, and although not a definitive finding, patients who are administered enteral anxiolytics are observed to be more relaxed and tolerant o f l C U treatment. No memories

of critical illness

Fifteen patients from our survey reported no memories of their time in the ICU. Many patients expressed anxiety or frustration or were unrealistic in their expectations of their ability to return to normal life at home. One patient recalled, 'it's like a black hole, as far as I was concerned I was never sick'. Compton (1991) suggests that 'for periods of time the critically ill person does not interpret or give meaning to his or her world' and a visit into the I C U durxng the outpatient appointment has been perceived as helpful in piecing together events when prompted by faces, noises or the layout o f the unit and sometimes explaining a dream or memory they have experienced. Flashbacks

Five patients described flashbacks occurring later in convalescence, and the experience appeared traumatic. One patient recalled 'flashbacks continue one to two times each week, they are scary, like a video replaying, clear and distinct. Afterwards I feel dazed and disorientated, and always tired. Tired like I felt on ITU'. As Moore & Thompson (1989) write regarding the symptoms o f PTSD: If these are ignored by the patient or go undetected by others the distress continues untreated, leading to the development o f psychopathy which can disrupt or even destroy an individual's life. (Moore & Thompson 1989 p 12) These findings have created a heightened awareness and vigilance for PTSD following critical illness, and three psychiatric referrals have been arranged from the clinic to date. Mood

changes

Many patients (n = 11) or their families identified evidence of mood changes once at home. These varied from frustration, anger and depression due to physical and social changes, to feelings of guilt for the strain they had exposed their families to when critically ill. Other experiences related to the deep unhappiness and confusion regarding feeling different about life after such a major event, rendering them unable to cope (n = 9) or to look forward with any confidence (n = 8). The need to talk about the ICU stay

Nine patients appeared to need to talk about their I C U stay and piece together events that

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they could not remember, but had difficulty in getting their families to talk about this time. Partners expressed tension about having to relive, on a regular basis, this harrowing time. We now arrange an increasing number of patient appointments to explain in detail the I C U notes in an attempt to satisfy individuals' need for information and to reduce stress at home. Carer or f a m i l y stress Ten famihes talked about and were observed to experience stress relating to altered domestic routine following critical illness. This was assessed through their apparent inability to cope with psychological and physical needs, demonstrating unrealistic expectations about a person's convalescence from critical illness. Furthermore, long-term socioeconomic changes were becoming apparent, resulting in mcreased stress, highlighting the need for appropriate discharge planning and community support. As the I C U follow-up service develops, an increasing number of telephone calls from families have occurred seeking advice or support from I C U services, resulting in provision o f an answer-phone facility and an early opportunity for relatives to receive support. Stress relating to r e l o c a t i o n f r o m the I C U and adjusting to life at h o m e Reported studies vary regarding the psychological significance of transfer from the I C U to a ward or a high dependency unit (Cutler & Garner 1995, Compton 1991). Cutler & Garner (1995) investigated relocation effects in patients discharged from the I C U to the ward and found it to cause considerable stress. The authors recommended that the introduction of education programmes and preparation of those at risk would result in a reduction of relocation stress. However, this study did not address the experience of adjustment to life at home. Compton (1991) found that rdocation stress was not experienced, and that while in hospital patients generally felt safe and well cared for, but the recovery phase at home caused stress to these individuals when they learned how ill they had been. Five of our patients found relocation to the ward to be a traumatic experience, and eight found the recovery phase at home to be particularly stressful, highlighting patients' recent dependence and loss o f function from critical illness. It was noted that some patients experienced both types of stress while others only experienced one type, highlighting the fact that evidence of relocation stress is not predictive of experiencing stress at home. The outcome o f these findings is that su~cient time is needed to be spent by the critical care~community liaison clinical nurse specialist to tailor a programme to reduce stress associated with relocation and dis-

charge home. The development of the outpatient clinic has been dynamic and ongoing, and the changing role of sister to a clinical nurse specialist in intensive care will be discussed later.

Physical problems Data from the clinic showed that many patients continued to experience physical problems either from the primary disease process or relating to the period o f critical illness. Symptoms included tiredness, weakness (n = 14), sleep difficulties (n = 3), poor concentration or memory (n = 8) and ongoing physical problems (n = 12) related to the illness. These invariably prevent individuals from functioning as before and expose them to extra psychosocial stress. The clinic in this instance provided pertinent, specialist advice and support for symptoms directly relating to critical illness: advice that had not been provided by community services, general practice, or hospital medical and surgncal outpatient appointments, which could influence patients' confidence and quality o f survival. The following examples illustrate the role o f the I C U follow-up clinics in the provision of specialist advice and support: One patient needed information about a pneumonia that had led to severe adult respiratory distress syndrome. The information required related to his 1CU stay and involved questions about why he had succumbed to the illness, whether or not his lungs were permanently damaged and whether or not he could look forward, confident in the knowledge that it would not happen again. In another case, a young mother experienced a severe weakness flora a possible critical illness neuropathy or myopathy. She had been denied social services when finding it difficult to cope at home simply because she had made a supreme effort to attend all general practitioner (GP) appointments and appeared to be coping well. For this woman, the clinic was able to explain the cause of her weakness and encourage realistic expectations in her recovery and to advise her and social services about the support she needed. Another patient endured considerable trouble from an old tracheostomy scar, presuming that this was normal following critical illness. Following herfirst appointment at the I C U follow-up dinic, she was referred to a plastic surgeon and later underwent plastic reconstructive surgery, enabling her to continue her life more confidently.

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FUTURE RESEARCH A N D DEVELOPMENT Major areas for development R e l o c a t i o n stress All patients who stay in the I C U for longer than 5 days are now followed up in the wards

Development of clinical nurse specialist in ICU

by the clinical nurse specialist (CNS) to assess the patient's and family's adjustment to transfer from the I C U to the ward, to help clarify events and to promote realistic expectations about convalescing from critical illness. An educational booklet for patients and relatives is currently being designed to highlight these issues. As a result of this method of follow-up, it has become evident that nursing staff in wards found caring for recently discharged I C U patients and their families stressful. Patients often felt vulnerable and unobserved, with their basic needs not being met, as did family members. If these concerns were unresolved, some patients and families became angry and made complaints, thus turning what had been perceived as a positive step in being transferred out of the I C U into a negative experience. As Griffiths stated, 'vulnerability is the root of psycho-reactive disorders' (Grifflths 1992 p 136), thus the role and responsibility of the CNS has developed to act as a link between the I C U and the wards in an attempt to ensure a smooth and safe transition from the ICU, to address problem areas and to provide support and advice to ward staff, patients and their families. Furthermore, an education programme has been developed for the wards based on data from the clinic. This aims to highlight the basic issues of care required by this group of patients and the problems that they experience in the

wards (Box).

Discharge planning The I C U clinical practice group addressed discharge planning, revising paperwork by means of an I C U summary sheet relevant to the staff in wards and an assessment sheet outlining the ability o f each patient and the care that he or she will require. This promotes continuity o f care by enabling staff subsequently caring for the patient to obtain concise and pertinent information. Preparation of each patient and family prior to I C U discharge is n o w stressed in an I C U teaching programme, and the process of transfer and follow-up has been considered. The essence o f clear communication and choice of

Box [-'xtracts from ICU clinic data highlighting relocation stressors due to patient dependence and loss of function I. Inability to eat, drink or care for themselves independently 2. Feeling upset after seeing their reflection in a mirror for the first time following

intensive care 3. Inability to move, change position or walk, leading to anxiety that they would be bed-bound thereafter 4. Feeling confused and vulnerable when realizing how dependent they have become, especially when they cannot remember or understand experiences in the ICU 5. Feeling unobserved and unsafe after being cared for on a one-to-one basis

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language has been highlighted to the I C U staff when transferring a patient, as several words and phrases have been identified as troublesome, one being the word 'stable', which is subjective and can be interpreted in many ways. Other statements such as 'this panent has done really well' and 'he's so much better', can lead to a false sense of security for ward stati] and perhaps phrases such as 'she's made really good progress, but she's still likely to be one o f the sickest patients on the ward' may be more appropriate.

Integration of service provision The clinic data highlighted the need for education and advice regarding recovery from critical illness. Through publicity and the development of a referral system, I C U follow-up services have become acknowledged as an integral part o f quality care from an acute and specialized area, extending into the community. Historically, our I C U has had close contact with GP services, involving telephone calls to alert GPs to any I C U admissions and subsequent weekly updates. Feedback has been enhanced because of the I C U follow-up clinic, with GPs indicating that they feel more informed and aware of the short- and long-term effects of critical illness on families. One GP recognized a patient experiencing severe psychological trauma relating to I C U experience. The patient had been admitted to a hospital that did not provide an I C U follow-up service, and by means of an extra-contractual referral to our clinic, he was able to receive the necessary support and followup. The patient has attended the clinic five times to date, making considerable progress in both understanding and rationalizing his time in the ICU. This has resulted in a reduction in physical and psychological symptoms, allowing him to regain nearly his previous quality of life. Another GP provided feedback that closer haison and provision of details concerning the death o f one of his patients in our I C U had enabled him to support a family appropriately at a time of crisis, and had generated credibility of hospital and community services. The clinic has evolved to provide a bereavement follow-up service for relatives. This was as a result of several self-referrals, GP referrals or referrals made through complaints procedures. The cllmc findings have shown that this group o f relatives requires information and support about events leading to the death of a family member. In most cases, unhappiness and concerns were due to poor understanding and memory o f events, and by provision o f relevant information and support, these families were helped to obtain a more realistic impression about the events that was vital to their grieving process.

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THE ROLE OF THE CRITICAL C A R E / C O M M U N I T Y LIAISON CLINICAL NURSE SPECIALIST (CNS) As a result o f the clinic data and the issues i d e n tified w i t h i n our hospital, the creation and d e v e l o p m e n t o f the role o f the C N S has b e e n v i e w e d as a major influence in achieving e d u cational and quality objectives regarding survival f r o m intensive care. T h e role has subsequently d e v e l o p e d f r o m a full-time I C U sister post, resulting in 50% o f time being spent as a C N S offering expert advice, support and e d u cation for staff, patients and relatives alike, regarding their experiences. T h e remaining 50% o f the role remains an I C U sister post. F o l l o w i n g the first stage o f this research, it is h o p e d that funding could be arranged to create a full-time post. T h e result o f this n e w innovative practice has b e e n to provide an important contact person responsible for addressing the quality o f survival o f patients following intensive care. T h e C N S has b e c o m e a vital link b e t w e e n the I C U and all outside agencies, extending into the c o m m u n i t y . O t h e r aspects o f the role include data collection, data analysis and audit as well as p r o v i d i n g feedback regarding findings, generating publicity about f o l l o w - u p services and liaising w i t h i n and b e t w e e n the hospital and o u r c o m m u n i t y , p r o m o t i n g seamless care.

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CONCLUSION This exploratory study has derived data that have led to the identification o f psychological and physical problems experienced by people w h o have u n d e r g o n e treatment in an I C U . W i t h o u t this service, these problems w o u l d remain undetected and untreated. It was an i n t e n d e d aim o f this study to explore the e x p e riences o f people following critical illness. A n u n e x p e c t e d discovery has b e e n the identification o f problems relating to discharge planning, relocation stress and the needs o f h i g h - d e p e n dency patients. This has required education o f nursing staff, patients, relatives, GPs and the public. This educational r e q u i r e m e n t has led to the d e v e l o p m e n t o f the role o f the critical care/ c o m m u n i t y liaison C N S in order to i m p r o v e liaison b e t w e e n and w i t h i n departments, the hospital and the c o m m u n i t y . Future research in this area will focus on the role o f the critical c a r e / c o m m u n i t y liaison C N S and i m p r o v e m e n t o f patient o u t c o m e s t h r o u g h the use o f

action research. T h e purpose o f utilizing action research w o u l d be to establish criteria using data derived f r o m this pilot study. Evaluation w o u l d consider the impact o f the i n n o v a t i o n by means o f analysing patient o u t c o m e s using psychological and physical assessment tools, together w i t h a financial appraisal o f associated costs and benefits.

REFERENCES Chandler E 1993 Can PTSD be prevented? A&E Nursing 1(2): 87-91 Compton P 1991 Critical illness and intenszve care: what it means to the chent. Critical Care Nurse 11 (1): 50-56 Cutler L, Garner M 1995 Reducing relocation stress after discharge from intensive therapy unit. Intensive and Critical Care Nursing 11 (6): 333-335 Grlffiths tK 1992 Development of normal indices of recovery from cnncal illness. Intensive Care Britain, Greycoat Pubhshing: 134--137 Jones C, Hussey R, Gnffiths tK 1993 A tool to measure the change in health status of selected adult patients before and after intensive care. Critical Intensive Care 4 (4): 160-165 Lloyd G 1993 Psychological problems and the intensive care unit. British Medical Journal 307 (6902)' 458-459 Moore K, Thompson D 1989 Post traumatic stress disorder in the orthopaedic patient Orthopaedic Nursing 8 (1): 11-19 Sawdon V, Woods I, Proctor M 1995 Post-intensive care interviews: implications for future practice. Intensive and Critical Care Nursing 11 (6): 329-332 Waldmann C, Gaine M 1996 The intensive care followup chmc. Care of the Critically Ill 12 (4): 118-121

BIBLIOGRAPHY Campbell A 1995 Recognising post-traumatic stress in Intensive Care patients. Intensive and Critical Care Nursing 11 (2): 60-65 Dyer I 1995 Preventing the ITU syndrome or how not to torture an ITU patient part 1. Intensive and Critical Care Nursing 11 (3): 130-139 Dyer I 1995 Preventing the ITU syndrome or how not to torture an ITU patient part 2. Intensive and Critical Care Nursing 11 (4): 223-232 Hickey H, Lewandowskl L 1988 Cntxcal care nurses role with families: a descriptive study part 1 Heart and Lung 17 (6): 670-676 Jackson I 1996 Critical care nurses perception of a bereavement follow-up service. Intensive and Critical Care Nursing 12 (1): 2-11 Jones C, Gnffiths IK 1995 Social support and anxiety levels in relatives of critically ill panents. British Journal of Intensive Care 5 (2): 44-47 Jones C, Hussey IK, Gnffths 1K1991 Social support in the ICU? British Journal of Intensive Care 1 (2): 66-69 Pochard F, IanoreJ, BellivzerF et al. 1995 Subjective psychological status of severely 111patients discharged from mechanical ventilation. Critical Intensive Care 6 (2): 57-61 Ruston 1K, Daly K 1993 Quality ofhfe after Intensive Care. British Journal of Nursing 2 (6): 316-320 Stover LeskeJ 1991 Internal psychometric properties of the critical care family needs inventory. Heart and Lung 20 (3): 236-244 Stover LeskeJ 1986 Needs of relatives of critically ill patients: a follow-up. Heart and Lung 15 (2): 189-193