Editorial: Surviving critical illness: Intensive care and beyond
It is hard to convey just how debilitated one is after an insult of ICU magnitude. (Misak 2011, p 845). A healthcare policymaker once pointed out that an intensive care unit (ICU) patient is only an intensive care patient as long as this patient is in ICU – after that, this person becomes a patient wherever he or she is in the healthcare system. In essence, the special circumstances of ICU patients (if we accept that these patients do differ from the main hospital population) fade into the background. Why, however, should we pay special attention to ICU survivors? What is so special about this patient population? The first hint is entailed in the quotation at the beginning of this editorial of this special edition. Misak, a physician, experienced an episode of critical illness and draws attention to the magnitude of the debilitation she experienced postcritical illness. She describes the ‘persistent and overwhelming generalized weakness and fatigue’ (Misak 2011, p. 845) she experienced even eight months after hospital discharge. Naturally, being a healthcare professional, her explanations differ from most of our patients in that she has an understanding of the systematic muscle injury and loss that occurs as a consequence of critical illness. In my experience, most ICU survivors are surprised to learn that they lose muscle mass whilst in ICU and once explained immediately understand why they can’t do the same things they could before becoming critically ill or why it takes so long to recover. Importantly, Misak’s personal account of recovering from critical illness portrays some of the challenges ICU survivors face well beyond their discharge home. Understanding these challenges therefore has consequences
in how clinical nurses care for ICU survivors across the recovery continuum. There is no doubt that past advances in pharmacology, medical technology and management of critical illness have resulted in increasing numbers of patients surviving critical illness. In fact, as Hillman (2007) pointed out, societal expectations are based on continuing rapid advances in all aspects of medicine including intensive care. However, no ICU patient survives if there is not skilled and professional nursing care that goes with those medical advances. For in reality, surviving a critical illness does come at a cost for patients and their families and nurses care for both at different times during this journey. In the past, costs and benefits of ICU treatment have been evaluated using ‘survival’ as an outcome measure (Young & Ridley 2002). Mortality rates were the guiding principle of success. Today, however, ‘we are in the middle of a real paradigm shift in our thinking about the scope and practices of critical care, and the continuum of a critical illness’ (Elliott 2011, p. 152). The research focus has shifted from simply surviving to the complexity of life postcritical illness. This shift is based on cumulating evidence that for some ICU survivors, critical illness leaves a legacy which is apparent in an array of physiological, psychological and emotional sequelae (Herridge 2007, Desai et al. 2011, Harvey & Davidson 2011). The challenges ICU survivors (and their families) face are many and wide ranging and include, to name a few, a lower health-related quality of life (Myhren et al. 2010), ICU-acquired weaknesses (neuromuscular dysfunction) (Herridge 2009, Griffiths 2010) and the very real impact
© 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 603–604, doi: 10.1111/jocn.12555
this has on normal everyday activities such as walking, brushing hair or teeth and so on to the emotional and cognitive consequences of ICU (Rattray et al. 2010, Jackson et al. 2012), making sense out of delirium experiences in ICU (Samuelsona 2011) to the need of rebuilding one’s life after critical illness (Deacon 2012). What are noticeably absent at present are insights into the social aspects of life after critical illness. There is little research around this aspect, yet social factors such as being able to re-engage with a previous social life play an important part in enabling or impeding overall recovery. After all, we do not exist in a vacuum and our emotional and psychological well-being is also influenced by opportunities of participating in life and human interaction. As many ICU survivors who are affected by an ICU-acquired weakness will attest, going out of the house is a serious challenge because they simply lack the muscle mass and stamina to do so for quite some time postcritical illness. Consequently, this cohort experiences isolation at a time where (social) support is needed. In this context, families (understood here as a self-defined unit and therefore include close friends) are important in many ICU survivors recovery journey. Various Western countries around the world have seen or are seeing a shift in which health care is being shifted from the acute care into the community care sector at an ever earlier stage of the recovery process. This policy-driven change in healthcare delivery leaves many family members caring for what are essentially still very debilitated recovering ICU survivors. Whilst, in general terms, families constitute an under-researched group in ICU
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Editorial
research, there is a tentative move towards patient- and family-centred care approaches that see the inclusion of families in care activities in ICU (Garrouste-Orgeas et al. 2010, Mitchell & Chaboyer 2010). The idea behind these approaches is the acknowledgement that patients are embedded in family systems but also the (research) insight that some families enact ‘being family’ by participating in care activities which in turn is a legitimisation of families presence in ICUs. Despite research evidence to the contrary, ICUs around the world have open visiting policies which are not implemented (Hunter et al. 2010). Time (and research) will tell whether this approach of integrating families into some care activities has a positive impact on patients’ and families’ ability to cope with what is essentially a distressing time for all concerned. In this special edition, we have included papers that will address some of the challenges ICU survivors face. The papers presented cover a diverse range of topics from an overview of life after critical illness to a discursive paper about the body, as well as the more traditional research papers covering a range of research methods. Most importantly, this special edition is published within a journal that is accessed by nurses across healthcare settings, and thus, one mission of this edition is to raise awareness of the challenges ICU survivors face after discharge from ICUs. Susanne Kean University of Edinburgh Scotland UK
604
Graeme D Smith Edinburgh Napier University Edinburgh, Scotland UK E-mail: [email protected]
References Deacon K (2012) Re-building life after ICU: a qualitative study of the patients’ perspective. Intensive and Critical Care Nursing 28, 114–122. Desai S, Law T & Needham D (2011) Longterm complications of critical care. Critical Care Medicine 39, 371–379. Elliott D (2011) Surviving critical illness. Australian Critical Care 24, 152–154. Garrouste-Orgeas M, Willems V, Timsit J-F, Diaw F, Brochon S, Vesin A, Philippart F, Tabah A, Coquet I, Bruel C, Moulard M-L, Carlet J & Misset B (2010) Opinions of families, staff, and patients about family participation in care in intensive care units. Journal of Critical Care 25, 634–640. Griffiths R (2010) Intensive care unitacquired weakness. Critical Care Medicine 38, 779–787. Harvey M & Davidson J (2011) Long-term consequences of critical illness: a new opportunity for high-impact critical care nurses. Critical Care Nurse 31, 12–15. Herridge M (2007) Long-term outcomes after critical illness: past, present, future. Current Opinion in Critical Care 13, 473–475. Herridge M (2009) Legacy of intensive care unit-acquired weakness. Critical Care Medicine 37, S457–S461. Hillman K (2007) Expectations around intensive care – 10 years on. In Intensive Care Medicine in 10 Years (Fink M, Suter P & Sibbald W eds). Springer Verlag, Berlin, pp. 55–60.
Hunter J, Goddard C, Rothwell M, Ketharaju S & Cooper H (2010) A survey of intensive care unit visiting policies in the United Kingdom. Anaesthesia 65, 1101–1105. Jackson J, Ely W, Morey M, Anderson V, Denne L, Clune J, Siebert C, Archer K, Torres R, Janz D, Schiro E, Jones J, Shintani A, Levine B, Pun B, Thompson J, Brummel N & Hoenig H (2012) Cognitive and physical rehabilitation of intensive care unit survivors: results of the RETURN randomized controlled pilot investigation. Critical Care Medicine 40, 1088–1097. Misak C (2011) ICU-acquired weakness. American Journal of Respiratory and Critical Care Medicine 183, 845–846. Mitchell M & Chaboyer W (2010) Family centred care: a way to connect patients, families and nurses in critical care. Intensive and Critical Care Nursing 26, 154–160. Myhren H, Ekeberg Ø & Stokland O (2010) Health-related quality of life and return to work after critical illness in general intensive care unit patients: a 1-year follow-up study. Critical Care Medicine 38, 1554–1561. Rattray J, Crocker C, Jones M & Connaghan J (2010) Patients’ perceptions of and emotional outcome after intensive care: results from a multicentre study. Nursing in Critical Care 15, 86–93. Samuelsona K (2011) Unpleasant and pleasant memories of intensive care in adult mechanically ventilated patients – findings from 250 interviews. Intensive and Critical Care Nursing 27, 76–84. Young C & Ridley S (2002) Mortality as an outcome measure for intensive care. In Outcomes in Intensive Care (Ridley S ed.). Butterworth Heinemann, Oxford, pp. 25–46.
© 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 603–604
It is hard to convey just how debilitated one is after an insult of ICU magnitude. (Misak 2011, p 845). A healthcare policymaker once pointed out that an intensive care unit (ICU) patient is only an intensive care patient as long as this patient is in ICU – after that, this person becomes a patient wherever he or she is in the healthcare system. In essence, the special circumstances of ICU patients (if we accept that these patients do differ from the main hospital population) fade into the background. Why, however, should we pay special attention to ICU survivors? What is so special about this patient population? The first hint is entailed in the quotation at the beginning of this editorial of this special edition. Misak, a physician, experienced an episode of critical illness and draws attention to the magnitude of the debilitation she experienced postcritical illness. She describes the ‘persistent and overwhelming generalized weakness and fatigue’ (Misak 2011, p. 845) she experienced even eight months after hospital discharge. Naturally, being a healthcare professional, her explanations differ from most of our patients in that she has an understanding of the systematic muscle injury and loss that occurs as a consequence of critical illness. In my experience, most ICU survivors are surprised to learn that they lose muscle mass whilst in ICU and once explained immediately understand why they can’t do the same things they could before becoming critically ill or why it takes so long to recover. Importantly, Misak’s personal account of recovering from critical illness portrays some of the challenges ICU survivors face well beyond their discharge home. Understanding these challenges therefore has consequences
in how clinical nurses care for ICU survivors across the recovery continuum. There is no doubt that past advances in pharmacology, medical technology and management of critical illness have resulted in increasing numbers of patients surviving critical illness. In fact, as Hillman (2007) pointed out, societal expectations are based on continuing rapid advances in all aspects of medicine including intensive care. However, no ICU patient survives if there is not skilled and professional nursing care that goes with those medical advances. For in reality, surviving a critical illness does come at a cost for patients and their families and nurses care for both at different times during this journey. In the past, costs and benefits of ICU treatment have been evaluated using ‘survival’ as an outcome measure (Young & Ridley 2002). Mortality rates were the guiding principle of success. Today, however, ‘we are in the middle of a real paradigm shift in our thinking about the scope and practices of critical care, and the continuum of a critical illness’ (Elliott 2011, p. 152). The research focus has shifted from simply surviving to the complexity of life postcritical illness. This shift is based on cumulating evidence that for some ICU survivors, critical illness leaves a legacy which is apparent in an array of physiological, psychological and emotional sequelae (Herridge 2007, Desai et al. 2011, Harvey & Davidson 2011). The challenges ICU survivors (and their families) face are many and wide ranging and include, to name a few, a lower health-related quality of life (Myhren et al. 2010), ICU-acquired weaknesses (neuromuscular dysfunction) (Herridge 2009, Griffiths 2010) and the very real impact
© 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 603–604, doi: 10.1111/jocn.12555
this has on normal everyday activities such as walking, brushing hair or teeth and so on to the emotional and cognitive consequences of ICU (Rattray et al. 2010, Jackson et al. 2012), making sense out of delirium experiences in ICU (Samuelsona 2011) to the need of rebuilding one’s life after critical illness (Deacon 2012). What are noticeably absent at present are insights into the social aspects of life after critical illness. There is little research around this aspect, yet social factors such as being able to re-engage with a previous social life play an important part in enabling or impeding overall recovery. After all, we do not exist in a vacuum and our emotional and psychological well-being is also influenced by opportunities of participating in life and human interaction. As many ICU survivors who are affected by an ICU-acquired weakness will attest, going out of the house is a serious challenge because they simply lack the muscle mass and stamina to do so for quite some time postcritical illness. Consequently, this cohort experiences isolation at a time where (social) support is needed. In this context, families (understood here as a self-defined unit and therefore include close friends) are important in many ICU survivors recovery journey. Various Western countries around the world have seen or are seeing a shift in which health care is being shifted from the acute care into the community care sector at an ever earlier stage of the recovery process. This policy-driven change in healthcare delivery leaves many family members caring for what are essentially still very debilitated recovering ICU survivors. Whilst, in general terms, families constitute an under-researched group in ICU
603
Editorial
research, there is a tentative move towards patient- and family-centred care approaches that see the inclusion of families in care activities in ICU (Garrouste-Orgeas et al. 2010, Mitchell & Chaboyer 2010). The idea behind these approaches is the acknowledgement that patients are embedded in family systems but also the (research) insight that some families enact ‘being family’ by participating in care activities which in turn is a legitimisation of families presence in ICUs. Despite research evidence to the contrary, ICUs around the world have open visiting policies which are not implemented (Hunter et al. 2010). Time (and research) will tell whether this approach of integrating families into some care activities has a positive impact on patients’ and families’ ability to cope with what is essentially a distressing time for all concerned. In this special edition, we have included papers that will address some of the challenges ICU survivors face. The papers presented cover a diverse range of topics from an overview of life after critical illness to a discursive paper about the body, as well as the more traditional research papers covering a range of research methods. Most importantly, this special edition is published within a journal that is accessed by nurses across healthcare settings, and thus, one mission of this edition is to raise awareness of the challenges ICU survivors face after discharge from ICUs. Susanne Kean University of Edinburgh Scotland UK
604
Graeme D Smith Edinburgh Napier University Edinburgh, Scotland UK E-mail: [email protected]
References Deacon K (2012) Re-building life after ICU: a qualitative study of the patients’ perspective. Intensive and Critical Care Nursing 28, 114–122. Desai S, Law T & Needham D (2011) Longterm complications of critical care. Critical Care Medicine 39, 371–379. Elliott D (2011) Surviving critical illness. Australian Critical Care 24, 152–154. Garrouste-Orgeas M, Willems V, Timsit J-F, Diaw F, Brochon S, Vesin A, Philippart F, Tabah A, Coquet I, Bruel C, Moulard M-L, Carlet J & Misset B (2010) Opinions of families, staff, and patients about family participation in care in intensive care units. Journal of Critical Care 25, 634–640. Griffiths R (2010) Intensive care unitacquired weakness. Critical Care Medicine 38, 779–787. Harvey M & Davidson J (2011) Long-term consequences of critical illness: a new opportunity for high-impact critical care nurses. Critical Care Nurse 31, 12–15. Herridge M (2007) Long-term outcomes after critical illness: past, present, future. Current Opinion in Critical Care 13, 473–475. Herridge M (2009) Legacy of intensive care unit-acquired weakness. Critical Care Medicine 37, S457–S461. Hillman K (2007) Expectations around intensive care – 10 years on. In Intensive Care Medicine in 10 Years (Fink M, Suter P & Sibbald W eds). Springer Verlag, Berlin, pp. 55–60.
Hunter J, Goddard C, Rothwell M, Ketharaju S & Cooper H (2010) A survey of intensive care unit visiting policies in the United Kingdom. Anaesthesia 65, 1101–1105. Jackson J, Ely W, Morey M, Anderson V, Denne L, Clune J, Siebert C, Archer K, Torres R, Janz D, Schiro E, Jones J, Shintani A, Levine B, Pun B, Thompson J, Brummel N & Hoenig H (2012) Cognitive and physical rehabilitation of intensive care unit survivors: results of the RETURN randomized controlled pilot investigation. Critical Care Medicine 40, 1088–1097. Misak C (2011) ICU-acquired weakness. American Journal of Respiratory and Critical Care Medicine 183, 845–846. Mitchell M & Chaboyer W (2010) Family centred care: a way to connect patients, families and nurses in critical care. Intensive and Critical Care Nursing 26, 154–160. Myhren H, Ekeberg Ø & Stokland O (2010) Health-related quality of life and return to work after critical illness in general intensive care unit patients: a 1-year follow-up study. Critical Care Medicine 38, 1554–1561. Rattray J, Crocker C, Jones M & Connaghan J (2010) Patients’ perceptions of and emotional outcome after intensive care: results from a multicentre study. Nursing in Critical Care 15, 86–93. Samuelsona K (2011) Unpleasant and pleasant memories of intensive care in adult mechanically ventilated patients – findings from 250 interviews. Intensive and Critical Care Nursing 27, 76–84. Young C & Ridley S (2002) Mortality as an outcome measure for intensive care. In Outcomes in Intensive Care (Ridley S ed.). Butterworth Heinemann, Oxford, pp. 25–46.
© 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 603–604
