Mary Ann Murray

Feeling like a burden to others: a systematic review focusing on the end of life.

Research into the burden of illness has focused predominantly on family caregivers, with little consideration of the other side of the caregiving relationship-care recipients’ perspectives on having become a ‘burden to others’. However, there is now a small but growing body of evidence to suggest that worry about creating burden to others is a common and troubling concern for people who are nearing the end of their lives. This concern is referred to as ‘self-perceived burden’. The present study provides a systematic review of the literature, addressing self-perceived burden at the end of life. Using standard methods, literature was searched for relevant studies in palliative care and related fields. The review revealed that self-perceived burden is reported as a significant problem by 19- 65% of terminally ill patients. It is correlated with loss of dignity, suffering, and a ‘bad death’. Self-perceived burden has also been identified as a relevant factor in death-hastening acts among patients with life-threatening illness, as well as in clinical decisions, such as the choice of place of care at the end of life, advance directives, and acceptance of treatment. Given the unique challenges faced by patients with advanced disease and their families, there is a need for further investigation into this under-researched area.

Decision Coaching to Prepare Patients for Making Health Decisions A Systematic Review of Decision Coaching in Trials of Patient Decision Aids

Background. Decision coaching is individualized, nondirective facilitation of patient preparation for shared decision making. Purpose. To explore characteristics and effectiveness of decision coaching evaluated within trials of patient decision aids (PtDAs) for health decisions. Data Sources. A subanalysis of trials included in the 2011 Cochrane Review of PtDAs. Study Selection. Eligible trials allowed the effectiveness of decision coaching to be compared with another intervention and/or usual care. Data Extraction. Two reviewers independently screened 86 trials, extracted data, and appraised quality. Data Synthesis. Ten trials were eligible. Decision coaching was provided by genetic counselors, nurses, pharmacists, physicians, psychologists, or health educators. Coaching compared with usual care (n = 1 trial) improved knowledge. Coaching plus PtDA compared with usual care (n = 4) improved knowledge and participation in decision making without reported dissatisfaction. Coaching compared with PtDA alone (n = 4) increased values-choice agreement and improved satisfaction with the decision-making process without any difference in knowledge or participation in decision making. Coaching plus PtDA compared with PtDA alone (n = 4) had no difference in knowledge, values-choice agreement, participation in decision making, or satisfaction with the process. Decision coaching plus PtDA was more cost-effective compared with PtDA alone or usual care (n = 1). Limitations. Methodological quality, number of trials, and description of decision coaching. Conclusions. Compared with usual care, decision coaching improved knowledge. However, the improvement in knowledge was similar when coaching was compared with PtDA alone. Outcomes for other comparisons are more variable, some trials showing positive effects and other trials reporting no difference. Given the small number of trials and variability in results, further research is required to determine the effectiveness of decision coaching.

Where the dying live: a systematic review of determinants of place of end-of-life cancer care.

PURPOSE/OBJECTIVES To describe the determinants of place of end-of-life (EOL) care for patients with cancer. DATA SOURCES A systematic literature review of primary research studies (1997-2007) was conducted. Studies that investigated place of EOL care or identified place of EOL care in relation to outcomes were examined, their critical quality was appraised, and references were mapped. DATA SYNTHESIS Of the 735 articles identified, 39 (representing 33 studies) met inclusion criteria. Two main research designs emerged: large-scale epidemiologic reports and smaller descriptive studies. Findings suggest that factors related to the disease, the individual, and the care and social environment influence place of EOL care for patients with cancer. Social support, healthcare inputs (from services and programs and healthcare provider contact), and patient preferences were the most important factors. CONCLUSIONS Most patients with terminal cancer prefer home palliation; however, most die in an institution. The reasons are complex, with various determinants influencing decisions regarding place of EOL care. IMPLICATIONS FOR NURSING Findings may highlight evidence-based interventions to assist patients and families facing decisions regarding place of EOL care. A clearer understanding of factors that influence place of EOL care for patients with cancer could enhance healthcare policy and guide needs-based modifications of the healthcare system.

A systematic review of factors influencing decision-making in adults living with chronic kidney disease

OBJECTIVE To identify factors influencing patient involvement in decision-making in the context of chronic kidney disease (CKD) and effective interventions to support their decision-making needs. METHODS A systematic review included studies and decision support tools that involved: (1) adults with CKD, (2) studies published from 1998-2008; and (3) a focus on patient decision-making needs, and/or barriers and facilitators to shared decision-making. Studies were quality appraised. RESULTS Forty studies were appraised. These studies mainly focused on the decisions patients with CKD faced around the choice of renal replacement therapy and withholding/withdrawing dialysis. Moreover, studies typically focused on health care professionals provision of information about the decision rather than identifying decisional conflict and supporting patients in decision-making. No studies were found that identified the patients point of view about factors that might influence or inhibit quality decision-making. Factors influencing CKD patients participation in decision included: (1) interpersonal relationships; (2) preservation of current well being, normality and quality of life; (3) need for control; and (4) personal importance on benefits and risks. Of the four patient decision aids identified, none had been evaluated for effectiveness. CONCLUSION Patients with CKD face decisions that are likely to cause decisional conflict. Most studies focused on information needs related to renal replacement therapy and withdrawing or withholding dialysis. There was less focus on other decision-making needs in the context of those choices and across the trajectory of CKD. Although patient decision aids and implementation of shared decision-making have been evaluated in patients with other medical conditions, little is known about interventions to support patients with CKD making quality decisions. PRACTICE IMPLICATIONS Patients with CKD have decision-making needs across the trajectory of their illness. Although little is known about supporting patients with CKD decision-making, support could be provided with protocols and tools that have been developed for other chronic illness situations. Development of CKD-specific clinical practice guidelines that include decision support best practices could benefit CKD patients. Research priorities include development and evaluation of CKD focused decision support tools and processes.

Nurses' perceptions of factors influencing patient decision support for place of care at the end of life.

Although patients have more choices about where to receive care as death approaches, they often need help with decision making. This study identified factors that influence nurses’ provision of decision support. A total of 22 nurses, from 3 health networks, participated in semistructured interviews. Overall, nurses held favorable attitudes toward providing decision support for place of care at end of life. Overlap between other professionals’ roles and nurses’ clinical experience affected nurses’ decision support behaviors. Although nurses considered decision support to be part of patient-centered care, they report a lack of skills, confidence, and tools to help them provide it. These findings confirm the need to develop practical postlicensure education strategies and ways to embed patient decision support tools into systems of care.

Whose choice is it? Shared decision making in nephrology care.

Patients living with end‐stage renal disease (ESRD) are faced with numerous decisions across the trajectory of their illness. Shared decision making (SDM) offers a patient‐centered approach to engage patients in decision making in meaningful ways. Using an SDM approach, patients and providers collaborate to make healthcare decisions by taking into account the best available empirical evidence, in conjunction with the patient’s values, preferences, and individual circumstances. In this article, we outline the principles of SDM; highlight the broad range and context of decisions faced by patients living with ESRD; review decision‐support interventions; and consider opportunities and challenges for implementing SDM into usual ESRD practice. A summary of current knowledge and areas for research and further investigation concludes the paper. Because nephrology team members spend a lot of time interacting with patients during treatments and follow‐up care, they are well positioned to engage in SDM. Healthcare systems need innovation in communication to ensure the ethical application of important technological improvements in renal treatments, and to ensure that patient decision‐support processes are available. SDM is a promising innovation to support the recalibration of care for patients living with end‐stage renal disease.

Interventions for Shared Decision‐Making About Life Support in the Intensive Care Unit: A Systematic Review

BACKGROUND Healthcare professionals and families make decisions about the use of life support for patients in the intensive care unit (ICU), including decisions to withhold or withdraw life support at the end-of-life. Best practice guidelines recommend using a shared decision-making (SDM) approach to improve the quality of end-of-life decision-making but do not describe how this should be done in practice. AIMS To know what elements of SDM had been tested to improve communication between healthcare professionals, patients, and their family about the decision. Trials relevant to our review assessed whether these interventions were more effective than usual care. METHODS A systematic review of randomized controlled trials of SDM interventions for the decision about using life support, limiting the use of life support, or withdrawing life support for hospitalized patients. We searched databases from inception to January 2011. RESULTS Of 3,162 publications, four unique trials were conducted between 1992 and 2005. Of four trials, three interventions were evaluated. Two studies of interventions including three of nine elements of SDM did not report improvements in communication. Two studies of the same ethics consultation, which included eight of nine elements of SDM, did not evaluate the benefit to communication. The interventions were not harmful; they decreased family member anxiety and distress, shortened intensive care unit stay, but did not affect patient mortality. IMPLICATIONS FOR RESEARCH AND PRACTICE Few studies have evaluated interventions to improve communication between healthcare professionals and patients/families when facing the decision about whether or not to use life support in the ICU. Interventions that include essential elements of SDM need to be more thoroughly evaluated in order to determine their effectiveness and health impact and to guide clinical practice.

Learning Needs of Nurses at a Residential Hospice

Nurses are essential care providers for patients and families living with terminal illness. Expert nursing care has the potential to diminish suffering, optimize comfort, and improve patient outcomes. Assisting nurses to strengthen their skills and capacity in the provision of end-of-life care is an important element of continuous quality improvement. A learning needs assessment was undertaken to help a group of hospice nurses to identify their learning needs. Data were collected using a cross-sectional multiple-method survey approach. Interviews, a focus group, a survey, and clinical observation were conducted. Findings identified assessment, information sharing, provision of decision support, and practical care delivery strategies as key learning needs. Pain assessment and management was found to be the primary knowledge and clinical skill development need. Use of multifaceted data collection approaches provided a practical and effective way to elucidate learning needs. Findings can be used to guide the development of responsive, learner-validated educational interventions.

End‐of‐life care decisions for haemodialysis patients – ‘We only tend to have that discussion with them when they start deteriorating’

Haemodialysis patients receive very little involvement in their end‐of‐life care decisions. Issues relating to death and dying are commonly avoided until late in their illness. This study aimed to explore the experiences and perceptions of doctors and nurses in nephrology for involving haemodialysis patients in end‐of‐life care decisions.

Practice Change in Long-Term Care Facilities in Ontario: Views of Managers and Staff

Little is known about how the use of data and feedback influences change in long-term care, and that was the focus of this study. Semistructured interviews were conducted with 126 frontline staff and managers from 19 randomly selected Ontario long-term care facilities. Content analysis revealed that staff members use data for problem identification and solution finding, justifying change, and monitoring change. Frontline providers primarily provided resident-based examples of data and feedback processes, whereas managers mainly described organization-based examples. Few participants discussed how information from mandated databases and related feedback processes could be used to inform change. Knowledge gained from this study will help organizations better understand the perspectives of different team members about data and feedback, thereby informing interventions that will enhance resident outcomes and quality service delivery in long-term care.