Successful recovery after trauma-who says?

Abstract

‘Satisfied? Satisfied? Is someone expecting me to be satisfied with my scars, disabilities, and difficulties in concentrating? What do you consider successful recovery? I hope you don’t think satisfaction is a measure of my outcome' answered J. H. This conversation with one of our post-ICU trauma victims caught me off guard. While we measure APACHE and SOFA scores and many biomarkers like lactate and pH to identify severity of disease and organ dysfunction, we also use patient perspective to understand the disease process for this individual. The patient experience has played a part in clinical research and practice for decades and continues to increase when considering patient-centred approach: it is necessary for the comprehensive assessment of the impact of treatment and care. Patient-related outcomes (PROs) can be used as primary outcome measures, survival rates and biomarkers as they reflect components important to the patient and may include patient reports of symptoms and other indices, such as quality of life. A PRO is directly reported by the patient without interpretation of the patient's response by a clinician or anyone else and pertains to the patient's health, or functional status, associated with health care or treatment (Higgins and Greene, 2011). These values may be measured in absolute terms, such as a patient's rating of pain. While meeting patients in our post-ICU trauma clinic, most of the complaints we confront are not primarily physical symptoms. Most often, recovering individuals discuss other disabilities that they consider more distressing, such as deteriorating interpersonal relationships, sexual dysfunction, work-related issues and socioeconomic and financial issues. Repeatedly, we hear about emotional and mental anguish, depression, hopelessness and sleep disturbances. Our health system offers, free of charge, cognitive behaviour therapy for post-traumatic stress disorder (PTSD). However, the reported symptoms do not always fit the ‘criteria’ for PTSD treatment. Consequently, there is a mismatch between the post-ICU and trauma team's definition of successful outcomes and those expressed by the patients, and this leads to dissatisfaction. As a result, the team has decided to change from recording PROs to patient-reported experience measures (PREMS). PREMS are tools that report patient satisfaction scores with a health service and are generic tools that are used to capture the overall patient experience of health care. PREMs are often used in the wider population and in non-specific settings, such an outpatient department. Patient experience tools, e.g. may be used to monitor patient feedback and focus on the general experience rather than an experience related to a specific disease (Welding and Smith, 2013). We introduced a social worker to our group and started trying to deal with patient and family experiences. Naturally, many of the socio-economic challenges faced by patients could not be addressed during an outpatient clinic visit, and some fell outside our professional realm of responsibility. Despite these limitations, we found that PREM tools did help to capture the nursing impact on the patients and family we care for. When analysing the post-ICU trauma experience, it may be helpful to inquire if the recovering individual has experienced any positive change in their life as a result of their trauma. New positive outlooks include relating positive new directions in life, for example, ‘established a new path for my life’ and a greater ‘sense of closeness with others’. Some may relate a personal strength ‘I discovered I am stronger than I thought I was’ (Jayawickreme and Blackie, 2014). While struggling with J. H.'s response regarding dissatisfaction with the current state of recovery, the team was able to redirect the clinic visit discussion to new opportunities and areas of personal growth. Does post-traumatic growth make any difference to psychological adjustment? If individuals see themselves as better persons, or couples see themselves as closer, what connection, if any, does this perceived change have to overall mental health? In a study of recovering cancer patients, Park et al. (2010) identified that those who found positive meaning in their cancer experience related to better well-being. Their findings suggest that perceptions of growth may reflect realization of some positive features of the illness experience (Park et al., 2010). Changes in outlook on life include, for many post-trauma individuals, a change in life priorities, an increased experience of ‘meaning of life wisdom’ and a greater interest in and openness to spiritual and religious matters. Individuals may experience growth by changing schemas, altering personal narratives and developing a greater degree of what can be called wisdom. In the context of clinical work with persons who have experienced crises, it is important to remember that growth may best be viewed as multidimensional. The individual may experience positive changes in some domains and no change or negative change in others. The findings of Park et al. (2010) suggest that perceived thriving in the struggle with trauma may have some positive implications for the individual's current and future well-being. Recovering from ICU hospitalization and trauma is a multi-dimensional experience that cannot be evaluated using simple outcome measure tools. We need to be very circumspect when examining the relationship of individual variables to outcome. Using only a few variables, or examining one aspect of recovery, one may identify a relationship that would reflect the complex condition. For instance, the relationship between injury severity and outcome is likely to be stronger if no other variables that could contribute to outcome are considered, such as absence of family support, small children at home, elderly parents that need to be taken into consideration and the patients' desire to be released from the hospital sooner than advised. These misunderstandings might lead to inappropriate emphasis on some aspects of recovery while overlooking factors that are more suitable. Other factors, such as the influence of baseline coping with crisis capabilities, the availability of post-acute care rehabilitation and patient expectations of rehabilitation, need to be examined. To develop a full understanding of the role these factors play in outcome, many socio-demographic elements need to be included in the follow-up period. Our health care team–recovering patient relationship is a lifelong bond. We need to listen more intently to what our patients are volunteering to tell us. Fine-tuning our conversation with patients and their families to focus on positive changes in their lives might result in a more optimistic perspective of the trauma/ICU experience. During our last clinic visit, I reminded JH that the anniversary of her accident would be in a few weeks and could she relate to me how she feels about this: ‘…I’ve changed a lot since the accident, the way which I envisioned my future is gone, disappeared and I have grieved over this. Now when I wear dresses and people stare at my deformed, scarred legs, I feel proud and confident that this is my new body. I believe that in feeling this way I can show women that whatever they look like, they should hold their head high and walk with self assurance'.