Muscle atrophy
Critical care polyneuropathy
Leg pains
Decreased immunocompetence
Effects of medication on levels of sleep, alertness and activity
Decreased sense of taste
Poor appetite
Altered swallowing mechanism and
sensation due to tracheostomy
Effects of stress hormones on cognitive abilities, pain perception, blood glucose levels, cortisol levels Reduced ability to communicate
Post-traumatic stress disorder
Sleep deprivation
Sensory deprivation, overload, monotony
Dreams/nightmares
Potential flashbacks Anxiety
Emotional imbalance and dependence
Reduced autonomy
Reduced privacy
Reduced social interaction and role
Reduced control over environment
Delirium

Holistic assessment

A multi-professional and multi-system approach to assessing Laura is crucial, including what Laura recognises as her main problems. This is endorsed by NICE (2009b) in an important publication, which focuses on the early assessment of patients in critical care with regard to their rehabilitation needs.

Assessing Laura’s progress in weaning from ventilation can be done using several different methods (see Chapter 2 for more information on weaning). Blood laboratory analysis should be performed twice weekly. Laura’s phosphate and haemoglobin levels may require supplementing to optimise her weaning ability. A speaking valve can be used to check voice strength and provide an intermittent means of familiar verbal communication for Laura. A test can be done to assess Laura’s ability to swallow oral fluids and food without aspiration risk. Weekly nutritional assessment, including a baseline weight and body mass index calculation can confirm whether Laura’s nutritional intake is sufficient for her current metabolism in view of her needs for weaning and muscle building, for protection from infection and for relaying fat stores (Plank et al. 1998). Further, the physiotherapy team can comprehensively assess general muscle strength and the extent of any critical illness polyneuropathy and develop an exercise plan (Ricks 2007). Weekly microbiological screening of sputum, urine and skin swabs can confirm absence of infection and justify limiting antibiotics which would also reduce her resistance to bacterial and fungal infections.

Several scoring tools are available to aid assessment of pain (Gélinas et al. 2006), anxiety and depression (Zigmond and Snaith 1983), levels of sedation (Sessler et al. 2002) and delirium (Ely et al. 2001; NICE 2009a) (see Chapters 10, 11 and 13). Specialist nurses and therapists can aid baseline expert assessment and provide advice on Laura’s needs, for example, a pain management nurse, clinical psychologist, specialist weaning nurse, speech and language specialist and occupational therapist. It is important, however, to select scoring or assessment methods which Laura finds useful and quick to use and to integrate them into evaluation so she can see her own progress. Too many visiting professionals may confuse and overwhelm Laura in her current emotional state and possibly reduce her trust in her primary team.

An environmental and social assessment, led as much as possible by Laura and her visitors, may lead to creative realistic adaptations which could promote her rehabilitation, sleep and social recovery (Hupcey 2000).

Scenario development

As Laura recovers, her family remain anxious and are viewed as ‘demanding’ by some of the nursing staff. For example, they frequently ask and repeat lots of questions about apparently minor, technical aspects of Laura’s condition, for example, ‘What’s her oxygen saturation today?’, and bring in information from the Internet to discuss and dispute some of her care, for example, ‘These sleeping tablets are making her lack energy in the day’, and ‘You shouldn’t be giving her Coke at all!’. They become angry and upset on days when they find that Laura had shared a nurse with another patient, even if Laura has received all the nursing care she requires and is, in her own words, ‘having a good day’.

Reader activities

• Consider why Laura’s family may have become ‘demanding’.

Discussion

Laura’s parents have witnessed her changing physical condition and experienced the stress of uncertainty regarding her survival/recovery, over a long period of time (Jones et al. 2004). Even though she is apparently not in danger of imminent death, they are probably still afraid that she may deteriorate and die. They have also experienced a loss of their natural parental role and opportunities to influence her survival/recovery, and have had to rely on the expertise of hospital staff to both help Laura and provide them with information (Leske 2000). This prolonged stress reduces physical and psychological coping mechanisms over time and may have affected their ability to think rationally and to build a trusting relationship with the clinical team (Johansson et al. 2005). Laura’s parents may have recognised that their lack of technical and clinical knowledge limits their ability to identify key indicators of her recovery and understand how her clinical management is co-ordinated. They will be understandably utilising knowledge they have acquired through observing and talking to hospital staff and through familiar resources such as Internet sites, in order to try to gain an accurate perspective of Laura’s current situation. It is possible that they now see an opportunity and view it as their responsibility to her to assert influence over her recovery by gaining knowledge and actively participating in decisions.

It is possible that the nurses have not recognised the complex emotional journey that Laura’s relatives will be experiencing and therefore view her parents’ questions and challenges negatively in terms of interfering with her care or as criticism of their efforts (Price 2004; Hughes et al. 2005; Latour 2005). Once their thought processes and emotions are understood through open conversation, Laura’s family’s mental focus and energy can be co-ordinated with the teams to help Laura’s rehabilitation (Benner et al. 1999; Endacott and Berry 2007).

An evidence-based discussion of management

A multi-professional case conference should be organised to form a holistic management plan. This plan must be committed to by everyone who is involved, and clearly documented (NICE 2009b). Documentation and equipment should be kept at Laura’s bed space at all times to ensure accessibility and consistency. Resources both within and outside of the hospital should be accessed for Laura. These might include a more comfortable and ergonomically suitable chair, occupational therapy and weaning advice.

An experienced nurse, physiotherapist and consultant should be the key co-ordinators, liaising with Laura and her family and ensuring that specific needs and care are met and that her progress is documented. The engagement and education of Laura’s family requires sophisticated communication and relationship-building skills and prolonged commitment (Williams 2005; Endacott and Berry 2007). It is crucial that the nurse co-ordinator has insight and experience in meeting the challenges of rehabilitating a long-stay patient, since it is intensive work which includes building Laura’s confidence and her family’s involvement. One could argue that although Laura’s acute medical needs are low, she is still highly nurse dependent and, therefore, would benefit from one-to-one nursing during her early rehabilitation. Conversely, it could be argued that Laura will gradually need to become more accustomed to less nursing attention as her independence increases, in readiness for her move towards ward care, and therefore sharing a nurse is appropriate. The role of the nurse co-ordinator and the reasons for either one-to-one or one-to-two nursing allocation must be explained diplomatically to Laura and her family.

Laura’s rehabilitation and socialisation has to start within an acute environment, where limited facilities for privacy and occupational therapy are often evident. A daily and weekly plan will give Laura structure to her day and help her to recognise achievement of short-term goals such as getting dressed in her own clothes. Laura’s plan should include general muscle building, short periods out of bed, rest periods and specific strengthening exercises with a mid-term aim of perhaps walking to the nearest window to see the view and a longer term aim of a hospital gym visit. Whilst Laura’s muscles build up, a weaning plan can also be devised for her (Goodman 2006) (see Chapter 2). A speaking valve can be used for speaking during the day, with her tracheostomy cuff down, to enable verbal communication, thereby giving her more control over her activities and enhancing communication with the nurse caring for her. Critical care patients have often described feeling extremely anxious during the weaning phase of their recovery and its success has been shown to be positively influenced by their perception of the skill of their nurse.

Several aids are available to assist communication. These include picture and/or letter/word boards, which may be useful initially and at times when Laura is too tired to talk. However, using a pen and paper requires good dexterity, something which can be difficult for weaker patients.

Psychosocial and physical approaches can be combined to resolve some of Laura’s problems. For example, her leg pain may be more tolerable with exercise, a more comfortable chair with leg rest and analgesia. She could be moved to a side room to promote sleep, privacy and independence. Laura could choose to use her head phones and iPOD for settling to sleep and her friends could provide evening ‘pamper sessions’ to reduce anxiety and aid relaxation (Urden et al. 2006). Laura should be encouraged to talk about her anxiety and nightmares and, if necessary, can take medication to aid sleep (Foa et al. 1999; NICE 2005). A call bell should always be close to Laura and answered promptly by the nearest nurse, to reassure her that she is safe.

Laura’s parents can be involved in practical ways such as bringing in her computer/DVD player, post, clothes and home-made food snacks and by helping her to get dressed and to exercise (Endacott and Berry 2007). Laura’s nasogastric feeding could be given only at night (via a new, fine-bore tube), and after passing a swallowing test, she can be encouraged to increase her oral diet gradually.

A patient diary may be useful to enable Laura to see her own progress over a period of days (Combe 2005; NICE 2009b). It could be completed by the nurses initially, then by Laura’s parents and then jointly by Laura dictating to her parents. Laura and her family should be introduced to the critical care outreach nursing team, who may visit Laura on the ward when she is transferred from critical care, check on her progress and spend time listening and talking with her about her longer term recovery and eventual hospital discharge (Beard 2005).

Discharge from critical care to a general ward has been identified as a particularly stressful time for patients and relatives, with concerns about safety prominent (Chaboyer et al. 2005; Field et al. 2008; Bench and Day 2009), and common difficulties identified with cognitive function, sleep disturbances, eating and mobility (Jones et al. 2003; Robson 2003; Roberts and Chaboyer 2004; Hopkins and Brett 2005). Effective support and information at this time is paramount to ensure optimal rehabilitation continues (Bench and Day 2009). The introduction of critical care outreach services and follow-up clinics has helped to highlight some of these problems and enabled provision of ongoing support for patients and their families (NICE 2009b) before and after discharge from hospital.

Conclusion

The percentage of longer stay patients surviving critical care and experiencing difficulties following discharge is increasing. Therefore, critical care nurses must recognise the importance of critical care rehabilitation and follow-up, and this should be reflected in their clinical practice and in the education they receive. It also needs to be taken into account in managerial and budgetary allocation of resources.

Key learning points

• Patients and their families experience a complex array of physical and psychological challenges during critical illness.
  
• Rehabilitation needs should be assessed early for all critically ill patients.
  
• A multi-professional approach is key to effective rehabilitation.
  
• Longer term patients require identification and management of their specific needs.

Critical appraisal of a research paper

Jones et al. (2003) Rehabilitation after critical illness: a randomized, controlled trial. Critical Care Medicine 31, 2456–2461.

This prospective, quantitative study evaluates the effects of adding a self-directed rehabilitation programme to routine follow-up care given to critical care patients.

Reader activities

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