- Email: [email protected]
Developing a care program to better know the chronically critically ill
Intensive and Critical Care Nursing (2006) 22, 355—361
ORIGINAL ARTICLE
Developing a care program to better know the chronically critically ill Marie-Jos´ e Roulin a,∗, Rebecca Spirig b,c a
Nursing Directorate, Medical Intensive Care Unit, University Hospital Geneva, 1211 Geneva 14, Switzerland b Institute of Nursing Science, University of Basel, Basel, Switzerland c Department of Clinical Nursing, University Hospital Basel, Basel, Switzerland Accepted 14 February 2006
KEYWORDS Critical care; Chronically critically ill; Practice development; Knowing the patient
Summary Patients requiring prolonged periods of intensive care and mechanical ventilation are termed chronically critically ill. These patients present a challenge to the healthcare team. In the fast-paced environment of the intensive care unit, their slow progress can be a source of frustration. At the University Hospital Geneva, a team, led by a clinical nurse specialist, addressed this problem by implementing a new care program with a goal to better know this patient population and improve their care. Values of emancipatory practice development guided the project, which utilized an action research methodology. Key assessment tools included a nursing focused patient history at admission and weekly nursing rounds, which allowed for periodic holistic assessment and care planning. New interventions focused on communication, physical care, and providing a context of understanding for the patient beyond hospitalisation, operationalised as a patient diary. The structure of the new program allowed the nurses to develop new skills and provided an environment for dynamic reflection. The care of this demanding patient population is beginning to be perceived by nurses as challenging and interesting. © 2006 Elsevier Ltd. All rights reserved.
Introduction Developments in intensive care medicine and critical care nursing have allowed an increased number of critically ill patients to survive the acute phase of their illness. Unfortunately, these patients ∗ Corresponding author. Tel.: +41 22 3729046; fax: +41 22 3729105. E-mail address: [email protected] (M.-J. Roulin).
do not always recover rapidly and may become dependent on life support and mechanical ventilation. In the literature, these patients have been identified as chronically critically ill (Carson and Bach, 2002; Daly et al., 1991). Depending on the setting, chronically critically ill patients account for 3—10% of Intensive Care Unit (ICU) admissions and approximately 25% of ICU days (Seneff et al., 1996; Weissman, 2000). Statistics for 2004 in our ICU centre in Geneva showed that 5.9% of patients
0964-3397/$ — see front matter © 2006 Elsevier Ltd. All rights reserved. doi:10.1016/j.iccn.2006.02.004
356 had a length of stay of more then 10 days, which represented 28% of the total care days. For these patients, the long ICU stay is a result of complications or an underlying chronic health condition (Daly et al., 1991; Nierman, 2002). They require skilled nursing care; continuity and consistency are also important (Briones and Carlino, 1998; Carasa and Nespoli, 2002). These patients typically experience sleep disturbances, inadequate nutrition, poor wound healing, failure to wean from the ventilator, lack of mobility, incontinence, and psychosocial disturbances—–all of which require specific knowledge. Several nursing authors (Swanson, 1993; Tanner et al., 1993) have stressed the importance of knowing how to optimise care delivery and patient outcomes. Furthermore, in a fast-paced, recovery-oriented ICU environment, healthcare providers often perceive these patients as a burden, as their recovery is slow without much observable progress day-to-day (Bussien and Moriaud, 1998). To address these special needs of the chronically critically ill, case management models have emerged. Daly et al. (1991) established a Special Care Unit (SCU), with the aim to provide an environment and a care delivery system designed to meet the needs of the chronically critically ill. The environment had less technology than the traditional ICU and patient care was managed by nurse case managers. All nurses acted as case managers, meaning they were accountable for patient’s clinical and financial outcomes. They would follow a patient from admission to discharge, taking a thorough patient history, and planning and coordinating care. In subsequent clinical trials (Douglas et al., 1996; Rudy et al., 1995), the findings demonstrated that the SCU had similar outcomes, including patient satisfaction, to those of the traditional ICU, but at lower cost. Furthermore, the nurses were more satisfied and absenteeism was lower (Song et al., 1997). Similar programs have been described with Master’s prepared Advanced Practice Nurses (APN) acting as nursing case managers by providing coordination and care oversight, and working in association with staff nurses (Briones and Carlino, 1998; Carasa and Nespoli, 2002). Results demonstrated a decreased length of stay (LOS) (Begonia et al., 1997), which was attributed to the following variables: interdisciplinary and coordinated care plan, clinical pathways and algorithms, and formal discharge planning meetings. These nurse managed care programs demonstrate the importance of a structured process to provide coordination of care and continuity to improve patient’s outcomes. Some aspects of the
M.-J. Roulin, R. Spirig SCU model could be applied to chronically critically ill patients in a traditional ICU. This article will present the development of a new program of care for chronically critically ill patients in a traditional ICU unit. It was led by an APN in collaboration with nursing management and staff nurses, physiotherapists and nursing assistants. The aims of this program were to improve the nursing care of the chronically critically ill, to increase the staff’s knowledge about problems in caring for these patients, and to develop specific interventions for this population with a goal to improve patient outcomes.
Method Context and setting The project took place in two 18 bed adult ICU units at the Geneva University Hospital. Approximately 200 healthcare workers are employed in the ICU on a full- and part-time basis. The nurses work in three 8-h shifts. At the beginning of each shift, a caseload of patients is assigned to each nurse so as to balance the workload and skill-mix across the units. The nurse is responsible for the total nursing care of the assigned patients and is helped by nursing assistants. The care goals are interdisciplinary and discussed during medical rounds, which take place twice daily. The patient allocation system is the same for all patients, whatever their length of stay in the ICU. It is adapted to short-stay patients but not to the chronically critically ill, as it makes it difficult to ensure consistent and continuous care throughout the ICU stay. Local studies found that the staff were unsatisfied with the care of this population and that families suffered from the lack of continuity among health care professionals (Bussien and Moriaud, 1998; Roulin, 1999).
Emancipatory practice development Emancipatory practice development (EPD) provided the characteristics and values that guided this project. EPD has been defined as an ongoing and patient centred process of care improvement (Garbett and McCormack, 2002). Patient centred means that care delivery is customised to patient and family characteristics. EPD focuses on empowering practitioners to change the culture of care and to explore best practice that is contextually defined (Manley and McCormack, 2003). Practitioners are encouraged to reflect on their practice, improve their work situation and produce
Developing a care program to better know the chronically critically ill knowledge from practice. Facilitators, using a structured process, support change that reflects the patient’s perspective. Another essential characteristic of EPD is the activity at the organisational level in order to have a benefit at the patient/nurse level (Manley and McCormack, 2003). In this project, EPD was operationalised essentially through action research, which is defined as an ongoing process that involves all participants in a spiral of steps, each of which is composed of a circle of analysing, planning, action, and evaluation (Lewin, 1946). It allows participants to develop knowledge that is then applied back to the practice setting from which it was generated. Action research is a research approach, because knowledge and theory are inductively generated from the field (Garbett and McCormack, 2002). Action research and EPD have the potential to address the gap between theory, research, and practice (Garbett and McCormack, 2002). Furthermore, the collaborative nature of these methods allows sustainable changes to take place. They have already been used successfully to enable nursing teams to develop new state of the art services in different settings, including an outpatient HIV/AIDS clinic and acute care (Spirig et al., 2004; Walsgrove and Fulbrook, 2005). In the context of developing this program, an in-depth reflection was needed to change the local culture of care and institute a dynamic process. It was therefore important to use a collaborative and structured process to guide the change and allow evidence-based practice to develop. Thus, action research was the method of choice.
Working method A team of health professionals interested in working on the care process of the chronically critically ill was created. It consisted of 19 members of staff including physiotherapists (n = 2), nursing assistants (n = 3), nurses (n = 14) and was led by an APN. The program began with a brainstorming session, where an analysis of care was undertaken, with a goal to define more clearly practice problems related to caring for the chronically critically ill. Following this brainstorming session, the team met several times in small working groups. From the groups, an initial concept emerged which was refined as it evolved over the next three years and several projects, each addressing a specific issue, were initiated. The idea of developing the program by dividing it into several smaller entities was a strategy to involve all interested nurses and allow each participant to develop a subject that was of particular
357
Figure 1 An action research circular process was used in each project to develop a care program for the chronically critically ill.
interest. In this way, each nurse was able to ‘‘own’’ one small part of the larger work that was being undertaken. The initial project team was divided in small working groups of three to eight members. All groups used an action research methodology with a circular process of data collection, analysis, action, and evaluation. They gathered evidence about their problem as a starting point. Evidence was identified as a combination of knowledge deriving from research, clinical experience, patient preference, and the local context (Rycroft-Malone et al., 2004). With this evidence collected and analysed, new services were created and tested in practice. If necessary, another circle of practice development was undertaken in the light of the evaluation (see Fig. 1). There were differences in the projects as to how the data were collected and evaluated. The entire project team met every six months to review and discuss the progress of all of the subprojects. A monthly newsletter was produced by the APN to maintain a link between all project participants. Face-to-face meetings were difficult to schedule, as most of the 19 team members work on rotating shifts. However, the newsletter and conversations among the participants were effective in maintaining ongoing communication about the project. The entire unit staff was involved through oral presentations and articles in the journals of the units. All participants and staff members were invited to comment on the work being done and provide feedback.
Results of the analysis During the initial analysis, difficulties perceived by the staff were categorised into two groups: difficulties that arise as a result of patient characteristics versus difficulties that were organisational
358 Table 1
M.-J. Roulin, R. Spirig Factors leading nurses to a feeling of frustration with chronically critically ill patients
Patient characteristics
Nursing and organisational characteristics
Slow progress Specific problems such as Muscle wasting Immobility Communication impairment Slow ventilator weaning Sleep disturbances Poor wound healing Swallowing difficulties Diarrhoea Mental problems such as Memory loss Difficulty concentrating Confusion Depression Frustrated families
Loss of information over time Poor care continuity and coordination Lack of competency in specific techniques such as Tilt tables Swallowing rehabilitation Poor knowledge about specific needs and adapted nursing interventions ICU culture values fast-paced care and recovery
in nature (see Table 1). The combination of these two factors led to a feeling of frustration and burnout among caregivers. The nursing team identified two main themes that they believed were critical to develop in order to improve outcomes for the chronically critically ill and diminish their frustration: 1. To know better their chronically critically ill patients as individuals: their history, expectations, worries, and fears. 2. To increase their knowledge about the specific problems and care interventions adapted to patients who are chronically critically ill. In a qualitative study about the development of expertise in critical care (Tanner et al., 1993), nurses defined ‘‘knowing the patient’’ as knowing the patient’s typical pattern of responses and knowing the patient as a person. For Swanson (1993), knowing is a major component of caring; it involves understanding of the clinical situation in general and the particularistic situation of the patient. It is essential to the provision of patient centred care
and to the detection of impending changes in the patient clinical situation. It contributes to care quality by enhancing the selection of nursing interventions and outcomes. To know the patient, nurses must engage in purposeful activities to assess and understand the patient’s situation, and also have the technical knowledge of the range of human responses to health problems. The need to know is reciprocal. Patients have expressed their need to know throughout and after their ICU stay (Hupcey and Zimmerman, 2000). In this project, several different approaches have been or are being studied to increase knowledge (see Fig. 2). To know the patient as a person, a specific process of care was developed encompassing a patient history and periodic holistic assessments. Smaller projects are focused on developing technical knowledge about new interventions suited to the chronically critically ill such as communications tools for intubated patients, interventions to improve the sleep of the patient, and techniques for positioning and mobility. These smaller projects are on different timetables: some have
Figure 2 Knowing to improve care.
Developing a care program to better know the chronically critically ill been finished, while others have yet to be implemented. Finally, diaries provide a context of understanding for the patient beyond his hospitalisation. Aspects of this new care program are presented in the following sections.
Patient history A specialised patient history was introduced to get to know the patient as person with a life beyond the ICU, and not just a clinical entity. A patient history guideline was developed after gathering and analysing data from the literature with the experience of the nurses in the ICU. Early evaluation revealed that the assessment was collecting information already available in the medical history and, further, much of the data were of little relevance to the care situation. Several circles of practice development were needed before a final three-page document was implemented. It summarised the pertinent physical, psychosocial, and behavioural information, patient and family expectations, and reactions to the current illness. Currently, the patient’s history is taken at the bedside with the family. Often the patient is unconscious and all the information is obtained from the family. Taking a patient history, and documenting it in the patient file, was a cultural change for the nurses involved in this project. For some, it was the first time they had to do it since nursing school, and they feared the reaction of the families and that of their colleagues. The project leader had to provide a great deal of support and take a few patient histories herself as a role model.
Nursing rounds In order to improve care continuity and coordination, the project team decided to introduce weekly nursing rounds for the chronically critically ill patients. The literature search had provided evidence that nursing rounds could be a method to improve care continuity, improve patient outcomes, and increase staff professionalism (Halm et al., 2003; Heering, 2004). Furthermore the rounds introduced a structured process to develop a coordinated care plan, which has shown to decrease length of stay (Carasa and Nespoli, 2002). The project team believed that these rounds could also enhance knowledge by sharing pertinent information about, and with the patient, and by brainstorming approaches for dealing with difficult issues. The rounds are an opportunity to identify care problems, set common goals, choose and plan interventions, and evaluate the efficacy and appropri-
359
ateness of the care. A moderator is designated in advance with responsibility to lead the weekly session and keep all participants focused on the task. The participants include the nurses and nursing assistants in charge of the patient that day, the respiratory care nurse, and the physiotherapist. Other consultants are invited based on an identified need, such as the wound specialist, a mental health clinical nurse specialist, or a social worker. The project team created a framework based on practice experience and literature to guide the nursing rounds. This process takes place at the patient bedside. The nurse in charge of the patient presents the patient, with a systematic nursing assessment, encompassing physical, mental health, behavioural, and social aspects. The patient is invited to take part in the discussion as much as possible. At the end of the round, the moderator summarises the problems and the planned interventions. The process is documented in the patient’s file for all to read. This allows all caregivers to access the knowledge shared during the nursing round and to give consistent care. The moderator’s role as a leader is essential to ensure the process of the rounds. Key to the role is to make sure a systematic assessment is undertaken, interventions are planned, practice issues are identified, discharge plans are reviewed, referrals are generated, and responsibilities related to the implementation of the care plan are clarified. At first, the moderator was the APN involved in this project, but gradually all project members have assumed the role. At present, the project group has implemented the process in practice and is working at improving their skills of being moderator. They continue to meet every two months to reflect on the work being carried out and to refine the process. A more formal evaluation of the benefits of this practice for patients is planned and will be carried out in the near future.
Patient diaries After their critical illness, patients expressed their need to know what happened and to piece together events of their hospitalisation (Hupcey and Zimmerman, 2000). Following an ICU stay, they often suffer from partial or complete amnesia. It has been suggested that the absence of recall creates a gap in the patient history that may be perceived as threatening and contribute to psychological morbidity following a critical illness (Griffiths and Jones, 2001). Diaries help patients to know what happened during their ICU stay and to gain insight about their illness (Bergbom et al., 1999). This project started incidentally. After read-
360 ing about diaries, a group of nurses started to write one spontaneously for a young patient. The patient’s feedback to this care intervention was enthusiastic and it led to the introduction of diaries for the chronically critically ill. To date, over 50 diaries have been completed. A patient diary is a notebook, left at the patient bedside during the ICU stay, in which the daily activities are described to the patient for him to read after his recovery. Health professionals describe in everyday language the events taking place in the ICU and the patient’s reactions. Families may narrate events taking place at home or write messages to the patient (Backm¨ an and Walther, 2001; Kerleroux and Roulin, 2004). It is a very personal care intervention where the health professionals are closely associated to families. Our experience shows that families are active participants in this project: they write as much as healthcare workers do (Kerleroux and Roulin, 2004). The patient’s presence as a person is strongly felt in the diaries, as the author writes for and to the patient. It is more than a description of daily activities. Messages of support are included, such as ‘‘hang in there,’’ and affection is conveyed with expressions of love and empathy. Feedback from patients is positive. They are comforted to read about all the attention and caring activities that took place around them, while they were unconscious. A formal content analysis is currently underway to understand the nature of diaries and how they may contribute to the patient’s recovery after a prolonged ICU stay.
Developing communication tools This project aimed to increase the nurses’ technical knowledge about the patients’ communication needs and formalised their practical experience with communication tools. The patient’s inability to speak is a major source of stress, frustration, and produces a feeling of powerlessness for the patient, family, and nurse (Hafsteindottir, 1996; Menzel, 1998). The data collection started with an extensive literature search to identify patient needs and desires. The results showed that patients preferred simple means of communication requiring no training, and often used a combination of methods. To complete this search, focus groups interviews were held to access the empirical knowledge of the nursing team. The results showed that the tools had to be available at the bedside and easy to sustain. There was a need to have several tools so that they could be adapted to each situation. Therefore, the project team created and introduced a ‘‘communication tool kit’’ consisting of several models of alphabet boards, a pic-
M.-J. Roulin, R. Spirig ture board, and a large felt pen with a writing board (Roulin et al., 2004). Several times, in the development phase, the nursing team was consulted and the process explained to all. Before finalising the tools, they were tested and evaluated with two patients and their families. The project has expanded and at present, the communication tools are also being used in other areas of the hospital besides the ICU, particularly in rehabilitation, with patients suffering from Parkinson’s disease and with long-term ventilated patients who are being cared for at home. Some nurses even use the picture board to communicate with foreign patients.
Conclusions The concept of knowing was central in the development of this process of care. It encompasses several elements: knowing technically about the needs of the chronically critically ill in general, knowing the patient as a person, and the patient knowing about the events that took place during the critical illness. All the new nursing interventions are aimed at developing an aspect of this knowing; and, hence promote patient centred care. The changes, in general, are modest, but the development of these new nursing interventions allows the nurses to better know their chronically critically ill patients. Furthermore, the introduction of nursing rounds for this population provided a structured process to assure consistency and continuity of care. Emancipatory practice development, facilitated by an APN, has enabled nurses to introduce a care program for the chronically critically ill, develop new skills, and offer new services. Nurses are now taking patient histories, moderating nursing rounds, becoming investigators, and testing novel interventions. They are proud of their achievements. As a result, they are willing to present their work to their colleagues at congresses, write articles, and present guest lectures in nursing programs. The entire nursing staff was actively involved in multiple small projects. Each nurse could find a niche with a theme and a working method that suited his or her personality. This program has initiated a dynamic reflection about the care of chronically critically ill and the care of this patient population is beginning to be perceived as challenging and interesting. Two nurses have even decided to follow a post-graduate course on chronic illness and rehabilitation. Emancipatory practice development has allowed nurses to feel that ‘‘something’’ could be done to change an unsatisfactory situation to a better one.
Developing a care program to better know the chronically critically ill The full impact of this program on nurses and patients still needs to be systematically evaluated, but daily care already shows progress. These changes are not only beneficial to long-term patients, but to all ICU patients. The institution has acknowledged the work being done at present; future plans call for the development of a special ICU unit dedicated to the care of the chronically critically ill.
Acknowledgements The authors thank the nurses who participated in the development of this process of care and especially Monique Takyi, RN, CCRN for her active involvement in the implementation of nursing rounds. Thanks are also extended to Leslie H. Nicoll, Ph.D., MBA, RN, BC for her careful review and editing of the manuscript.
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Halm MA, Gagner S, Goering M, Sabo J, Smith M, Zaccagnini M. Interdisciplinary rounds: impact patients, families and staff. Clin Nurse Spec: J Adv Nurs Pract 2003;17:133— 42. Heering C. Formen der Pflegevisite in der station¨ aren Pflege [Forms of nursing rounds in hospital settings]. In: Heering C, editor. Das Pflegevisiten-Buch. Bern: Verlag Hans Huber; 2004. p. 45—57. Hupcey J, Zimmerman H. The need to know: experiences of critically ill patients. Am J Crit Care 2000;9:192—8. Kerleroux A, Roulin MJ. Le journal de bord des patients: r´ ecit d’une exp´ erience [Patients’ diaries: narration of an experience]. Les cahiers du REIPR 2004;20:61—3. Lewin K. Action research and minority issues. J Soc Issues 1946;2:34—46. Manley K, McCormack B. Practice development: purpose, methodology, facilitation and evaluation. Nurs Crit Care 2003;8:22—9. Menzel LK. Factors related to the emotional responses of intubated patients to being unable to speak. Heart Lung 1998;27:245—52. Nierman DM. A structure of care for the chronically critically ill. Crit Care Clin 2002;18:477—91. Roulin MJ. Quand un sourire vaut de l’or: R´ epondre aux besoins des familles aux soins intensifs [When a smile is worth gold: Answering families’ needs in ICU]. Krankenpflege Soins Infirmiers 1999;2:62—6. Roulin MJ, Mouron F, Simon L. Communiquer avec les patients intub´ es [Communicating with intubated patients]. Krankenpflege Soins Infirmiers 2004;11:54—6. Rudy EB, Daly BJ, Douglas S, Montenegro D, Song R, Dyer MA. Patient outcomes for the chronically critically ill: special versus intensive care unit. Nurs Res 1995;44:324—31. Rycroft-Malone J, Titchen A, Harvey G, Kitson A, McCormack B. What counts as evidence in evidence-based practice? J Adv Nurs 2004;47:81—90. Seneff MG, Zimmerman JE, Knaus WA. Predicting the duration of mechanical ventilation: the importance of disease and patient characteristics. Chest 1996;110:469— 79. Song R, Daly BJ, Rudy EB, Douglas S, Dyer MA. Nurses’ job satisfaction, absenteeism, and turnover after implementing a special care unit practice model. Res Nurs Health 1997;20:443—52. Spirig R, Nicca D, Voggensperger J, Unger M, Werder V, Niepmann S. The Advanced Nursing Practice Team as a Model for HIV/AIDS Caregiving in Switzerland. J Assoc Nurses Aids Care 2004;15:47—55. Swanson KM. Nursing as informed caring for the well-being of others. Image: J Nurs Scholarsh 1993;25:352—7. Tanner CA, Benner P, Chelsa C, Gordon D. The phenomenology of knowing the patient. Image: J Nurs Scholarsh 1993;25:273—80. Walsgrove H, Fulbrook P. Advancing the clinical perspective: a practice development project to develop the nurse practitioner role in an acute hospital trust. J Clin Nurs 2005;14:444—55. Weissman C. Analyzing the impact of long-term patients on ICU bed utilization. Intensive Care Med 2000;26:1319—25.
ORIGINAL ARTICLE
Developing a care program to better know the chronically critically ill Marie-Jos´ e Roulin a,∗, Rebecca Spirig b,c a
Nursing Directorate, Medical Intensive Care Unit, University Hospital Geneva, 1211 Geneva 14, Switzerland b Institute of Nursing Science, University of Basel, Basel, Switzerland c Department of Clinical Nursing, University Hospital Basel, Basel, Switzerland Accepted 14 February 2006
KEYWORDS Critical care; Chronically critically ill; Practice development; Knowing the patient
Summary Patients requiring prolonged periods of intensive care and mechanical ventilation are termed chronically critically ill. These patients present a challenge to the healthcare team. In the fast-paced environment of the intensive care unit, their slow progress can be a source of frustration. At the University Hospital Geneva, a team, led by a clinical nurse specialist, addressed this problem by implementing a new care program with a goal to better know this patient population and improve their care. Values of emancipatory practice development guided the project, which utilized an action research methodology. Key assessment tools included a nursing focused patient history at admission and weekly nursing rounds, which allowed for periodic holistic assessment and care planning. New interventions focused on communication, physical care, and providing a context of understanding for the patient beyond hospitalisation, operationalised as a patient diary. The structure of the new program allowed the nurses to develop new skills and provided an environment for dynamic reflection. The care of this demanding patient population is beginning to be perceived by nurses as challenging and interesting. © 2006 Elsevier Ltd. All rights reserved.
Introduction Developments in intensive care medicine and critical care nursing have allowed an increased number of critically ill patients to survive the acute phase of their illness. Unfortunately, these patients ∗ Corresponding author. Tel.: +41 22 3729046; fax: +41 22 3729105. E-mail address: [email protected] (M.-J. Roulin).
do not always recover rapidly and may become dependent on life support and mechanical ventilation. In the literature, these patients have been identified as chronically critically ill (Carson and Bach, 2002; Daly et al., 1991). Depending on the setting, chronically critically ill patients account for 3—10% of Intensive Care Unit (ICU) admissions and approximately 25% of ICU days (Seneff et al., 1996; Weissman, 2000). Statistics for 2004 in our ICU centre in Geneva showed that 5.9% of patients
0964-3397/$ — see front matter © 2006 Elsevier Ltd. All rights reserved. doi:10.1016/j.iccn.2006.02.004
356 had a length of stay of more then 10 days, which represented 28% of the total care days. For these patients, the long ICU stay is a result of complications or an underlying chronic health condition (Daly et al., 1991; Nierman, 2002). They require skilled nursing care; continuity and consistency are also important (Briones and Carlino, 1998; Carasa and Nespoli, 2002). These patients typically experience sleep disturbances, inadequate nutrition, poor wound healing, failure to wean from the ventilator, lack of mobility, incontinence, and psychosocial disturbances—–all of which require specific knowledge. Several nursing authors (Swanson, 1993; Tanner et al., 1993) have stressed the importance of knowing how to optimise care delivery and patient outcomes. Furthermore, in a fast-paced, recovery-oriented ICU environment, healthcare providers often perceive these patients as a burden, as their recovery is slow without much observable progress day-to-day (Bussien and Moriaud, 1998). To address these special needs of the chronically critically ill, case management models have emerged. Daly et al. (1991) established a Special Care Unit (SCU), with the aim to provide an environment and a care delivery system designed to meet the needs of the chronically critically ill. The environment had less technology than the traditional ICU and patient care was managed by nurse case managers. All nurses acted as case managers, meaning they were accountable for patient’s clinical and financial outcomes. They would follow a patient from admission to discharge, taking a thorough patient history, and planning and coordinating care. In subsequent clinical trials (Douglas et al., 1996; Rudy et al., 1995), the findings demonstrated that the SCU had similar outcomes, including patient satisfaction, to those of the traditional ICU, but at lower cost. Furthermore, the nurses were more satisfied and absenteeism was lower (Song et al., 1997). Similar programs have been described with Master’s prepared Advanced Practice Nurses (APN) acting as nursing case managers by providing coordination and care oversight, and working in association with staff nurses (Briones and Carlino, 1998; Carasa and Nespoli, 2002). Results demonstrated a decreased length of stay (LOS) (Begonia et al., 1997), which was attributed to the following variables: interdisciplinary and coordinated care plan, clinical pathways and algorithms, and formal discharge planning meetings. These nurse managed care programs demonstrate the importance of a structured process to provide coordination of care and continuity to improve patient’s outcomes. Some aspects of the
M.-J. Roulin, R. Spirig SCU model could be applied to chronically critically ill patients in a traditional ICU. This article will present the development of a new program of care for chronically critically ill patients in a traditional ICU unit. It was led by an APN in collaboration with nursing management and staff nurses, physiotherapists and nursing assistants. The aims of this program were to improve the nursing care of the chronically critically ill, to increase the staff’s knowledge about problems in caring for these patients, and to develop specific interventions for this population with a goal to improve patient outcomes.
Method Context and setting The project took place in two 18 bed adult ICU units at the Geneva University Hospital. Approximately 200 healthcare workers are employed in the ICU on a full- and part-time basis. The nurses work in three 8-h shifts. At the beginning of each shift, a caseload of patients is assigned to each nurse so as to balance the workload and skill-mix across the units. The nurse is responsible for the total nursing care of the assigned patients and is helped by nursing assistants. The care goals are interdisciplinary and discussed during medical rounds, which take place twice daily. The patient allocation system is the same for all patients, whatever their length of stay in the ICU. It is adapted to short-stay patients but not to the chronically critically ill, as it makes it difficult to ensure consistent and continuous care throughout the ICU stay. Local studies found that the staff were unsatisfied with the care of this population and that families suffered from the lack of continuity among health care professionals (Bussien and Moriaud, 1998; Roulin, 1999).
Emancipatory practice development Emancipatory practice development (EPD) provided the characteristics and values that guided this project. EPD has been defined as an ongoing and patient centred process of care improvement (Garbett and McCormack, 2002). Patient centred means that care delivery is customised to patient and family characteristics. EPD focuses on empowering practitioners to change the culture of care and to explore best practice that is contextually defined (Manley and McCormack, 2003). Practitioners are encouraged to reflect on their practice, improve their work situation and produce
Developing a care program to better know the chronically critically ill knowledge from practice. Facilitators, using a structured process, support change that reflects the patient’s perspective. Another essential characteristic of EPD is the activity at the organisational level in order to have a benefit at the patient/nurse level (Manley and McCormack, 2003). In this project, EPD was operationalised essentially through action research, which is defined as an ongoing process that involves all participants in a spiral of steps, each of which is composed of a circle of analysing, planning, action, and evaluation (Lewin, 1946). It allows participants to develop knowledge that is then applied back to the practice setting from which it was generated. Action research is a research approach, because knowledge and theory are inductively generated from the field (Garbett and McCormack, 2002). Action research and EPD have the potential to address the gap between theory, research, and practice (Garbett and McCormack, 2002). Furthermore, the collaborative nature of these methods allows sustainable changes to take place. They have already been used successfully to enable nursing teams to develop new state of the art services in different settings, including an outpatient HIV/AIDS clinic and acute care (Spirig et al., 2004; Walsgrove and Fulbrook, 2005). In the context of developing this program, an in-depth reflection was needed to change the local culture of care and institute a dynamic process. It was therefore important to use a collaborative and structured process to guide the change and allow evidence-based practice to develop. Thus, action research was the method of choice.
Working method A team of health professionals interested in working on the care process of the chronically critically ill was created. It consisted of 19 members of staff including physiotherapists (n = 2), nursing assistants (n = 3), nurses (n = 14) and was led by an APN. The program began with a brainstorming session, where an analysis of care was undertaken, with a goal to define more clearly practice problems related to caring for the chronically critically ill. Following this brainstorming session, the team met several times in small working groups. From the groups, an initial concept emerged which was refined as it evolved over the next three years and several projects, each addressing a specific issue, were initiated. The idea of developing the program by dividing it into several smaller entities was a strategy to involve all interested nurses and allow each participant to develop a subject that was of particular
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Figure 1 An action research circular process was used in each project to develop a care program for the chronically critically ill.
interest. In this way, each nurse was able to ‘‘own’’ one small part of the larger work that was being undertaken. The initial project team was divided in small working groups of three to eight members. All groups used an action research methodology with a circular process of data collection, analysis, action, and evaluation. They gathered evidence about their problem as a starting point. Evidence was identified as a combination of knowledge deriving from research, clinical experience, patient preference, and the local context (Rycroft-Malone et al., 2004). With this evidence collected and analysed, new services were created and tested in practice. If necessary, another circle of practice development was undertaken in the light of the evaluation (see Fig. 1). There were differences in the projects as to how the data were collected and evaluated. The entire project team met every six months to review and discuss the progress of all of the subprojects. A monthly newsletter was produced by the APN to maintain a link between all project participants. Face-to-face meetings were difficult to schedule, as most of the 19 team members work on rotating shifts. However, the newsletter and conversations among the participants were effective in maintaining ongoing communication about the project. The entire unit staff was involved through oral presentations and articles in the journals of the units. All participants and staff members were invited to comment on the work being done and provide feedback.
Results of the analysis During the initial analysis, difficulties perceived by the staff were categorised into two groups: difficulties that arise as a result of patient characteristics versus difficulties that were organisational
358 Table 1
M.-J. Roulin, R. Spirig Factors leading nurses to a feeling of frustration with chronically critically ill patients
Patient characteristics
Nursing and organisational characteristics
Slow progress Specific problems such as Muscle wasting Immobility Communication impairment Slow ventilator weaning Sleep disturbances Poor wound healing Swallowing difficulties Diarrhoea Mental problems such as Memory loss Difficulty concentrating Confusion Depression Frustrated families
Loss of information over time Poor care continuity and coordination Lack of competency in specific techniques such as Tilt tables Swallowing rehabilitation Poor knowledge about specific needs and adapted nursing interventions ICU culture values fast-paced care and recovery
in nature (see Table 1). The combination of these two factors led to a feeling of frustration and burnout among caregivers. The nursing team identified two main themes that they believed were critical to develop in order to improve outcomes for the chronically critically ill and diminish their frustration: 1. To know better their chronically critically ill patients as individuals: their history, expectations, worries, and fears. 2. To increase their knowledge about the specific problems and care interventions adapted to patients who are chronically critically ill. In a qualitative study about the development of expertise in critical care (Tanner et al., 1993), nurses defined ‘‘knowing the patient’’ as knowing the patient’s typical pattern of responses and knowing the patient as a person. For Swanson (1993), knowing is a major component of caring; it involves understanding of the clinical situation in general and the particularistic situation of the patient. It is essential to the provision of patient centred care
and to the detection of impending changes in the patient clinical situation. It contributes to care quality by enhancing the selection of nursing interventions and outcomes. To know the patient, nurses must engage in purposeful activities to assess and understand the patient’s situation, and also have the technical knowledge of the range of human responses to health problems. The need to know is reciprocal. Patients have expressed their need to know throughout and after their ICU stay (Hupcey and Zimmerman, 2000). In this project, several different approaches have been or are being studied to increase knowledge (see Fig. 2). To know the patient as a person, a specific process of care was developed encompassing a patient history and periodic holistic assessments. Smaller projects are focused on developing technical knowledge about new interventions suited to the chronically critically ill such as communications tools for intubated patients, interventions to improve the sleep of the patient, and techniques for positioning and mobility. These smaller projects are on different timetables: some have
Figure 2 Knowing to improve care.
Developing a care program to better know the chronically critically ill been finished, while others have yet to be implemented. Finally, diaries provide a context of understanding for the patient beyond his hospitalisation. Aspects of this new care program are presented in the following sections.
Patient history A specialised patient history was introduced to get to know the patient as person with a life beyond the ICU, and not just a clinical entity. A patient history guideline was developed after gathering and analysing data from the literature with the experience of the nurses in the ICU. Early evaluation revealed that the assessment was collecting information already available in the medical history and, further, much of the data were of little relevance to the care situation. Several circles of practice development were needed before a final three-page document was implemented. It summarised the pertinent physical, psychosocial, and behavioural information, patient and family expectations, and reactions to the current illness. Currently, the patient’s history is taken at the bedside with the family. Often the patient is unconscious and all the information is obtained from the family. Taking a patient history, and documenting it in the patient file, was a cultural change for the nurses involved in this project. For some, it was the first time they had to do it since nursing school, and they feared the reaction of the families and that of their colleagues. The project leader had to provide a great deal of support and take a few patient histories herself as a role model.
Nursing rounds In order to improve care continuity and coordination, the project team decided to introduce weekly nursing rounds for the chronically critically ill patients. The literature search had provided evidence that nursing rounds could be a method to improve care continuity, improve patient outcomes, and increase staff professionalism (Halm et al., 2003; Heering, 2004). Furthermore the rounds introduced a structured process to develop a coordinated care plan, which has shown to decrease length of stay (Carasa and Nespoli, 2002). The project team believed that these rounds could also enhance knowledge by sharing pertinent information about, and with the patient, and by brainstorming approaches for dealing with difficult issues. The rounds are an opportunity to identify care problems, set common goals, choose and plan interventions, and evaluate the efficacy and appropri-
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ateness of the care. A moderator is designated in advance with responsibility to lead the weekly session and keep all participants focused on the task. The participants include the nurses and nursing assistants in charge of the patient that day, the respiratory care nurse, and the physiotherapist. Other consultants are invited based on an identified need, such as the wound specialist, a mental health clinical nurse specialist, or a social worker. The project team created a framework based on practice experience and literature to guide the nursing rounds. This process takes place at the patient bedside. The nurse in charge of the patient presents the patient, with a systematic nursing assessment, encompassing physical, mental health, behavioural, and social aspects. The patient is invited to take part in the discussion as much as possible. At the end of the round, the moderator summarises the problems and the planned interventions. The process is documented in the patient’s file for all to read. This allows all caregivers to access the knowledge shared during the nursing round and to give consistent care. The moderator’s role as a leader is essential to ensure the process of the rounds. Key to the role is to make sure a systematic assessment is undertaken, interventions are planned, practice issues are identified, discharge plans are reviewed, referrals are generated, and responsibilities related to the implementation of the care plan are clarified. At first, the moderator was the APN involved in this project, but gradually all project members have assumed the role. At present, the project group has implemented the process in practice and is working at improving their skills of being moderator. They continue to meet every two months to reflect on the work being carried out and to refine the process. A more formal evaluation of the benefits of this practice for patients is planned and will be carried out in the near future.
Patient diaries After their critical illness, patients expressed their need to know what happened and to piece together events of their hospitalisation (Hupcey and Zimmerman, 2000). Following an ICU stay, they often suffer from partial or complete amnesia. It has been suggested that the absence of recall creates a gap in the patient history that may be perceived as threatening and contribute to psychological morbidity following a critical illness (Griffiths and Jones, 2001). Diaries help patients to know what happened during their ICU stay and to gain insight about their illness (Bergbom et al., 1999). This project started incidentally. After read-
360 ing about diaries, a group of nurses started to write one spontaneously for a young patient. The patient’s feedback to this care intervention was enthusiastic and it led to the introduction of diaries for the chronically critically ill. To date, over 50 diaries have been completed. A patient diary is a notebook, left at the patient bedside during the ICU stay, in which the daily activities are described to the patient for him to read after his recovery. Health professionals describe in everyday language the events taking place in the ICU and the patient’s reactions. Families may narrate events taking place at home or write messages to the patient (Backm¨ an and Walther, 2001; Kerleroux and Roulin, 2004). It is a very personal care intervention where the health professionals are closely associated to families. Our experience shows that families are active participants in this project: they write as much as healthcare workers do (Kerleroux and Roulin, 2004). The patient’s presence as a person is strongly felt in the diaries, as the author writes for and to the patient. It is more than a description of daily activities. Messages of support are included, such as ‘‘hang in there,’’ and affection is conveyed with expressions of love and empathy. Feedback from patients is positive. They are comforted to read about all the attention and caring activities that took place around them, while they were unconscious. A formal content analysis is currently underway to understand the nature of diaries and how they may contribute to the patient’s recovery after a prolonged ICU stay.
Developing communication tools This project aimed to increase the nurses’ technical knowledge about the patients’ communication needs and formalised their practical experience with communication tools. The patient’s inability to speak is a major source of stress, frustration, and produces a feeling of powerlessness for the patient, family, and nurse (Hafsteindottir, 1996; Menzel, 1998). The data collection started with an extensive literature search to identify patient needs and desires. The results showed that patients preferred simple means of communication requiring no training, and often used a combination of methods. To complete this search, focus groups interviews were held to access the empirical knowledge of the nursing team. The results showed that the tools had to be available at the bedside and easy to sustain. There was a need to have several tools so that they could be adapted to each situation. Therefore, the project team created and introduced a ‘‘communication tool kit’’ consisting of several models of alphabet boards, a pic-
M.-J. Roulin, R. Spirig ture board, and a large felt pen with a writing board (Roulin et al., 2004). Several times, in the development phase, the nursing team was consulted and the process explained to all. Before finalising the tools, they were tested and evaluated with two patients and their families. The project has expanded and at present, the communication tools are also being used in other areas of the hospital besides the ICU, particularly in rehabilitation, with patients suffering from Parkinson’s disease and with long-term ventilated patients who are being cared for at home. Some nurses even use the picture board to communicate with foreign patients.
Conclusions The concept of knowing was central in the development of this process of care. It encompasses several elements: knowing technically about the needs of the chronically critically ill in general, knowing the patient as a person, and the patient knowing about the events that took place during the critical illness. All the new nursing interventions are aimed at developing an aspect of this knowing; and, hence promote patient centred care. The changes, in general, are modest, but the development of these new nursing interventions allows the nurses to better know their chronically critically ill patients. Furthermore, the introduction of nursing rounds for this population provided a structured process to assure consistency and continuity of care. Emancipatory practice development, facilitated by an APN, has enabled nurses to introduce a care program for the chronically critically ill, develop new skills, and offer new services. Nurses are now taking patient histories, moderating nursing rounds, becoming investigators, and testing novel interventions. They are proud of their achievements. As a result, they are willing to present their work to their colleagues at congresses, write articles, and present guest lectures in nursing programs. The entire nursing staff was actively involved in multiple small projects. Each nurse could find a niche with a theme and a working method that suited his or her personality. This program has initiated a dynamic reflection about the care of chronically critically ill and the care of this patient population is beginning to be perceived as challenging and interesting. Two nurses have even decided to follow a post-graduate course on chronic illness and rehabilitation. Emancipatory practice development has allowed nurses to feel that ‘‘something’’ could be done to change an unsatisfactory situation to a better one.
Developing a care program to better know the chronically critically ill The full impact of this program on nurses and patients still needs to be systematically evaluated, but daily care already shows progress. These changes are not only beneficial to long-term patients, but to all ICU patients. The institution has acknowledged the work being done at present; future plans call for the development of a special ICU unit dedicated to the care of the chronically critically ill.
Acknowledgements The authors thank the nurses who participated in the development of this process of care and especially Monique Takyi, RN, CCRN for her active involvement in the implementation of nursing rounds. Thanks are also extended to Leslie H. Nicoll, Ph.D., MBA, RN, BC for her careful review and editing of the manuscript.
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