People with terminal illness spend most of time in their last months of life at home, regardless of where they ultimately die (Gomes & Higginson, 2013). Although family caregivers and home health services are critical to care at home, home care nurses play a pivotal role (Ward-Griffin & McKeever, 2000). Deciding how often nurses should visit, however, is not straightforward; dying at home is a complex process where change is anticipated and transitions are the norm. Palliative patients' conditions can rapidly change; uncontrolled symptoms can cause severe distress (Downing et al., 2010). Family caregivers can become overburdened with providing care while dealing with their own impending loss (Stajduhar et al., 2008). The care situation can become unmanageable in the absence of appropriate and timely access to home care nursing, particularly for patients expected to die within weeks or months of time (Stajduhar, 2003). In this changing context, clinicians must determine the optimal timing of the next visit.
Clinicians use anticipatory thinking to extend their view of care beyond the present (Gillespie & Peterson, 2009). Planning the next visit involves many cues and interpretations, and capacity for this decision making varies. The predictive judgement required to schedule the next visit is a competency new home healthcare clinicians need to acquire.
In contrast to expert clinicians who draw upon intuitive knowledge, novice clinicians depend more heavily on rules to guide their decision making (Benner, 1984). When they do not have confidence in their decision making, novices rely on more experienced colleagues or may avoid these situations (Tanner, 2006). Revealing the processes of decision making by experts and the factors influencing their decisions can help the novice gain greater understanding of clinical decision making (Benner, 1984; Tanner, 2006). A decision guide is one strategy to make this knowing explicit; encouraging reflective practice, promoting consistency, and improving outcomes of care (Medves et al., 2010).
Practice Wisdom and Guide Development
Although the literature is replete with studies on nurse decision making, we found no references that provided specific guidance for decisions about when to time home care nursing visits for palliative patients. Recognizing that expert clinicians have this knowledge, we decided to create a decision guide based on “practice wisdom.” McLeod's (2000) earlier work about nursing decision making lent credibility to our process of bringing experienced nurses together to describe the factors they considered when planning the timing of the next home visit as a base for a decision-making guide. The guide developed outlined assessment factors to be considered in determining a level of risk. Each level of risk was associated with a corresponding visiting frequency.
Clinicians found the practice wisdom guide useful in decision making but highlighted a number of areas where the guide lacked sufficient clarity. Was there a ranking in importance and weighting of the assessment factors? If one factor was highly ranked, did that correspond to a higher level of risk or were more factors required to increase the risk? Clinicians' practice questions triggered the realization that evidence was needed to inform further development of the guide to answer these questions.
Nursing Research and Guide Development
We needed to better understand the cues nurses use to make a decision to next visit and their decision-making process. The palliative clinical nurse specialists partnered with university-based researchers to design a qualitative research study to better understand the factors clinicians take into account when making decisions about the need and amount of service for patients and families at the end of life. Twenty-nine home care nurses participated in think-aloud interviews recording their decision-making process about planning visits, and were then interviewed to clarify points that arose out of the think-aloud analysis. Study findings revealed a complex practice environment where clinicians considered a number of cues to inform predictive judgments about the need, amount and timing of home care nursing visits (Stajduhar et al., 2011b).
Decision Guide Refinement
Although findings of the research validated a number of the concepts of the original decision guide, key factors of symptoms, care-giving capacity, variability and relationships, as well as features of the process of decision making described by study participants, were missing. A team of palliative care clinicians and expert home care nurses applied the research findings and decision-making theory into the previous practice wisdom guide to create a refined evidence-informed decision guide. After piloting the new decision guide in one home healthcare office and making final modifications, the guide was implemented across all 13 Fraser Health Home Healthcare offices.
The Decision Guide
The “Palliative Care: Determining Next Home Care Nurse Visit” decision guide informs clinical assessments and judgments to assist in the planning of the next home care nursing visit, to effectively support the needs and goals of patients and families, and to prevent crises in the home. At the conclusion of each visit a decision is required about the timing of the next visit. The colors in the decision guide demonstrate the dynamic nature of decision making and aid the clinician to match the degree of risk with the urgency of the visit; from low risk to medium risk to high risk. The guide reflects the perspective that decision making is not a linear problem-solving process, but a complex process situated within a greater context (Gillespie & Peterson, 2009).
The assessment phase establishes a baseline of knowing by referencing the key factors considered in forming a predictive judgment about the timing of the next visit. The more foundational knowledge of the patient and family the nurse has, the better the nurse can create a balanced decision (Stajduhar, 2011a). These factors include features of the patient's clinical presentation and disease, as well as the illness experience, strengths, and coping resources of both the patient and the family (Tanner, 2006). Indicators for each assessment factor align with one of the three levels of risk.
The judgment phase guides a fluid process of further exploring the risk of crisis in the home before the next visit by filtering the level of risk, initially determined by the assessment phase, through consideration of three trigger questions. The relationship of the patient and the family with home care services influences the timing of the next visit. A stronger relationship often indicates that the patient will call home health if needs change between scheduled visits. Those with weaker relationships require a sooner visit time. As well, interprofessional team involvement and coordination are strong filter considerations in predicting the timing of the next nursing visit. The up and down arrow in the judgment column acknowledges this process of interpretation.
In the decision phase, the guiding questions are “When should we next visit?” and “When can we next visit?” These guiding questions highlight a step that is typically invisible but important in decision making, where the clinician chooses an appropriate action considering the role of sharing information and the possibility of collaboration (Gillespie & Peterson, 2009). The final question guides the nurse to consider these contextual variables in negotiation with the patient, family, and the resources of the home healthcare office.
Application of the Decision Guide to Al's Story
We return to AI's story and apply the decision guide to determine the next visit in Al's story, assuming that the reader is the clinician in the second half of the case study (Table 1). Although not a linear process, for teaching purposes we'll move through the case in a stepwise process as outlined in the guide instructions.
Clinicians find the decision guide very useful in practice. Through practice huddles, clinical rounds, and education sessions, they describe how the guide helps prioritizing patient visits, provides a common language for case discussion, and enables nurses to explain decision-making rationale. Nurses use the guide to describe clinical situations indicating a need for additional staff or overtime. As an education tool, use of the guide supports development of the next visit competency and communication between mentors and novice nurses regarding their decision making.
Although developed specifically for nurses working with patients expected to die within months of time, the tool has broader practice implications. The decision guide provides valuable guidance for next visit decisions for patients with chronic life-limiting illnesses where the timing of dying is less predictable, such as those with congestive heart failure or chronic obstructive lung disease, and has the potential to inform visit timing decisions for other clinicians such as rehabilitation therapists. The guide can inform decisions beyond when to next visit. Recently, the guide was modified to support decisions about who is the most appropriate nurse to visit palliative patients, a licensed practice nurse or a registered nurse. Finally, the format and processes representing the critical thinking process captured in the guide provides a template to articulate other complex decision processes in home health.
Formal evaluation of the effectiveness of the tool is underway. As the decision guide has generated great interest in the clinical practice community with many requests to share this work, we are publishing the tool while undertaking the quality-improvement process. A follow-up publication on the evaluation will be forthcoming.
The decision guide creates a clear process for determining the next visit, enabling nurses to better schedule timely visits to support patients and families at home during the final months of life. Novice clinicians in particular benefit from the explicit description of the decision-making process involved in this complex clinical decision. The decision guide for next visit is an example of how the application of nursing research into home healthcare practice can build evidence-informed knowledge and promote consistent clinician decision making for the next visit along the novice to expert continuum.
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