Neuroticism as a moderator of symptom-related distress and depression in 4 noncancer end-of-life populations.

OBJECTIVES: Neuroticism is a significant predictor of adverse psychological outcomes in patients with cancer. Less is known about how this relationship manifests in those with noncancer illness at the end-of-life (EOL). The objective of this study was to examine the impact of neuroticism as a moderator of physical symptoms and development of depression in patients with amyotrophic lateral sclerosis (ALS), chronic obstructive pulmonary disease (COPD), end-stage renal disease (ESRD), and frailty in the last 6 months of life. METHODS: We met this objective using secondary data collected in the Dignity and Distress across End-of-Life Populations study. The data included N = 404 patients with ALS (N = 101), COPD (N = 100), ESRD (N = 101), and frailty (N = 102) in the estimated last 6 months of life, with a range of illness-related symptoms, assessed longitudinally at 2 time points. We examined neuroticism as a moderator of illness-related symptoms at Time 1 (∼6 months before death) and depression at Time 2 (∼3 months before death) using ordinary least squares regression. RESULTS: Results revealed that neuroticism significantly moderated the relationship between the following symptoms and depression measured 3 months later: drowsiness, fatigue, shortness of breath, wellbeing (ALS); drowsiness, trouble sleeping, will to live, activity (COPD); constipation (ESRD); and weakness and will to live (frailty). SIGNIFICANCE OF RESULTS: These findings suggest that neuroticism represents a vulnerability factor that either attenuates or amplifies the relationship of specific illness and depressive symptoms in these noncancer illness groups at the EOL. Identifying those high in neuroticism may provide insight into patient populations that require special care at the EOL.

Critical nursing and health care aide behaviors in care of the nursing home resident dying with dementia.

BACKGROUND: With the aging of the population, dying with dementia will become one of the most common ways in which older adults will end their final years of life, particularly for those living in a nursing home. Though individuals living with dementia have complex care needs and would benefit from a palliative approach to care, they have traditionally not been recipients of such care. An important aspect of determining quality in end-of-life care is the identification of expert practices, processes or behaviors that may help achieve this care. However, for those living with dementia in nursing homes, we have a limited understanding of how to best support expert end of life care. To redress this gap in knowledge, the purpose of this study was to examine and describe expert care of the individual with dementia approaching death from the perspective of nurses and health care aides (HCAs) identified by their peers as having special expertise in caring for this population. METHODS: A qualitative research design known as Interpretative Description was used to conduct the study. Expert nurses and HCAs were identified through a two-phase nomination process. Individual semi-structured interviews were conducted with consenting participants. Data were analyzed using constant comparative analysis to determine the key critical behaviors. RESULTS: Analysis of data collected from expert nurses (n = 8) and HCAs (n = 7) revealed six critical behaviors when caring for residents dying with dementia. All nurses and HCAs unanimously endorsed that the overarching goal of care is similar for all residents who are actively dying; to achieve comfort. The six critical behaviors in caring for residents dying with dementia included: 1) recognizing and responding to changes in a resident's pattern of behavior; 2) attending to the person; 3) working with the family; 4) engaging with others; 5) responding after the death has occurred; and 6) having a positive attitude toward care of the dying. CONCLUSIONS: The critical behaviors described by nurses and HCAs in this study provides emerging evidence of best practices in care of those with dementia and their families, particularly near the end of life within the nursing home setting.

Developing and testing a nursing home end -of -life care chart audit tool.

BACKGROUND: Nursing home (NH) administrators need tools to measure the effectiveness of care delivered at the end of life so that they have objective data on which to evaluate current practices, and identify areas of resident care in need of improvement. METHODS: A three-phase mixed methods study was used to develop and test an empirically derived chart audit tool aimed at assessing the care delivered along the entire dying trajectory. RESULTS: The Auditing Care at the End of Life (ACE) instrument contains 27 questions captured across 6 domains, which are indicative of quality end-of-life care for nursing home residents. CONCLUSIONS: By developing a brief chart audit tool that captures best practices derived from expert consensus and the research literature, NH facilities will be equipped with one means for monitoring and assessing the care delivered to dying residents.

Assessing the credibility and transferability of the patient compassion model in non-cancer palliative populations.

BACKGROUND: A lack of evidence and psychometrically sound measures of compassion necessitated the development of the first known, empirically derived, theoretical Patient Compassion Model (PCM) generated from qualitative interviews with advanced cancer inpatients. We aimed to assess the credibility and transferability of the PCM across diverse palliative populations and settings. METHODS: Semi-structured, audio-recorded qualitative interviews were conducted with 20 patients with life-limiting diagnoses, recruited from 4 settings (acute care, homecare, residential care, and hospice). Participants were first asked to share their understandings and experiences of compassion. They were then presented with an overview of the PCM and asked to determine whether: 1) the model resonated with their understanding and experiences of compassion; 2) the model required any modification(s); 3) they had further insights on the model's domains and/or themes. Members of the research team analyzed the qualitative data using constant comparative analysis. RESULTS: Both patients' personal perspectives of compassion prior to viewing the model and their specific feedback after being provided an overview of the model confirmed the credibility and transferability of the PCM. While new codes were incorporated into the original coding schema, no new domains or themes emerged from this study sample. These additional codes provided a more comprehensive understanding of the nuances within the domains and themes of the PCM that will aid in the generation of items for an ongoing study to develop a patient reported measure of compassion. CONCLUSIONS: A diverse palliative patient population confirmed the credibility and transferability of the PCM within palliative care, extending the rigour and applicability of the PCM that was originally developed within an advanced cancer population. The views of a diverse palliative patient population on compassion helped to validate previous codes and supplement the existing coding schema, informing the development of a guiding framework for the generation of a patient-reported measure of compassion.

Health care provider communication: an empirical model of therapeutic effectiveness.

BACKGROUND: Patients who are facing life-threatening and life-limiting cancer almost invariably experience psychological distress. Responding effectively requires therapeutic sensitivity and skill. In this study, we examined therapeutic effectiveness within the setting of cancer-related distress with the objective of understanding its constituent parts. METHODS: Seventy-eight experienced psychosocial oncology clinicians from 24 health care centers across Canada were invited to participate in 3 focus groups each. In total, 29 focus groups were held over 2 years, during which clinicians articulated the therapeutic factors deemed most helpful in mitigating patient psychosocial distress. The content of each focus group was summarized into major themes and was reviewed with participants to confirm their accuracy. Upon completion of the focus groups, workshops were held in various centers, eliciting participant feedback on an empirical model of therapeutic effectiveness based on the qualitative analysis of focus group data. RESULTS: Three primary, interrelated therapeutic domains emerged from the data, forming a model of optimal therapeutic effectiveness: 1) personal growth and self-care (domain A), 2) therapeutic approaches (domain B), and 3) creation of a safe space (domain C). Areas of domain overlap were identified and labeled accordingly: domain AB, therapeutic humility; domain BC, therapeutic pacing; and domain AC, therapeutic presence. CONCLUSIONS: This empirical model provides detailed insights regarding the elements and pedagogy of effective communication and psychosocial care for patients who are experiencing cancer-related distress.

Toward a holistic understanding of cancer cachexia: Application of the human response to illness model.

Cachexia is a commonly presenting multidimensional syndrome in individuals living with advanced cancer. Given its prevalence of between 50% and 80%, nurses are going to encounter individuals manifesting ongoing loss of skeletal muscle mass (with or without loss of fat mass) that can be partially but not entirely reversed by conventional nutritional support. Thus nurses require a comprehensive understanding of this complex clinical problem. Research suggests, however, that nurses receive minimal education about cachexia or its management. Limited understanding undermines the ability to confidently care for patients with cachexia and their families, thereby hampering effective practice. The human response to illness model provides nurses with an organizing framework to guide and make sense of their assessments in clinical practice when caring for patients with cancer cachexia and provides direction for appropriate intervention. This article illustrates the integration of the human response to illness model to clinical practice, thereby assisting nurses to develop a comprehensive understanding of the physiological, pathophysiological, behavioral, and experiential facets of cachexia in advanced cancer patients. Contemporary areas of further interest and research will be presented.

Developing a question prompt list for family caregivers concerning the progression and palliative care needs of nursing home residents living with dementia.

Objective: Communication around a palliative approach to dementia care often is problematic or occurs infrequently in nursing homes (NH). Question prompt lists (QPLs), are evidence-based lists designed to improve communication by facilitating discussions within a specific population. This study aimed to develop a QPL concerning the progression and palliative care needs of residents living with dementia. Methods: A mixed-methods design in 2 phases. In phase 1, potential questions for inclusion in the QPL were identified using interviews with NH care providers, palliative care clinicians and family caregivers. An international group of experts reviewed the QPL. In phase 2, NH care providers and family caregivers reviewed the QPL assessing the clarity, sensitivity, importance, and relevance of each item. Results: From 127 initial questions, 30 questions were included in the first draft of the QPL. After review by experts, including family caregivers, the QPL was finalized with 38 questions covering eight content areas. Conclusion: Our study has developed a QPL for persons living with dementia in NHs and their caregivers to initiate conversations to clarify questions they may have regarding the progression of dementia, end of life care, and the NH environment. Further work is needed to evaluate its effectiveness and determine optimal use in clinical practice. Innovation: This unique QPL is anticipated to facilitate discussions around dementia care, including self-care for family caregivers.

A comparison of patient and family caregiver prospective control over lung cancer.

AIM: This paper is a report of our secondary analysis of patient and family caregiver prospective control in lung cancer. BACKGROUND: Control beliefs underlie self-care in sickness and health. Self-care often involves 'shared' activities between the afflicted individual and caregiving family and friends. However, depending on how control is perceived, conflicts can occur in decision-making thus jeopardizing optimal self-care. We need to comprehend how control beliefs compare between patients and caregivers and how their control beliefs are linked with dealing with serious illness. METHODS: Based on questionnaire data collected in our larger study between September 2005 and February 2009, we conducted exploratory comparative analyses of 304 patients' and caregivers' control beliefs in managing lung cancer. Eight 5-point response items captured prospective control. Exploratory factor analysis with promax rotation was conducted to compare dyadic perceptions on the dimensionality of prospective control. We also conducted exploratory correlations between control beliefs and smoking cessation, attributional reactions, caregiver helping and symptom reports. RESULTS: Principal component analysis identified the same factors for patients and caregivers: factor 1, Fate control and factor 2, Team control. Patient and caregiver 'Fate' and 'Team' control sub-scales were respectively associated with hope, caregiver helping and patient smoking cessation. CONCLUSION: Clinicians need to support, adapt or develop a philosophy of cancer care that is inclusive of partnerships, drawing on beliefs of patients and caregivers that controlling lung cancer is a team effort which in turn is tentatively linked to patient smoking cessation, positive emotions and caregiver helping.

Understanding bereaved family members' dissatisfaction with end-of-life care in nursing homes.

With increasing numbers of older adults identifying a nursing home (NH) as their final place of care, it is important to assess the quality of dying in this setting and understand factors that impact family members' dissatisfaction with end-of-life care. A retrospective bereaved family member survey (N = 208) was conducted in 21 NHs located in urban areas of central Canada. Bereaved family members who were dissatisfied with care identified significantly more concerns in all domains assessed and were more likely to have problems with: (a) receiving confusing information from nursing staff about the resident's care, including medical treatments; (b) receiving inadequate information from nursing staff; and (c) feeling that end-of-life care was different than they had expected. Since the quality of communication between nurses, residents, and family members is the main factor that determines families' dissatisfaction with care, strategies and interventions aimed at reducing unmet information needs will be vital to improving end-of-life care in NHs.

Dignity therapy: a feasibility study of elders in long-term care.

OBJECTIVE: The purpose of this study was to assess the feasibility of dignity therapy for the frail elderly. METHOD: Participants were recruited from personal care units contained within a large rehabilitation and long-term care facility in Winnipeg, Manitoba. Two groups of participants were identified; residents who were cognitively able to directly take part in dignity therapy, and residents who, because of cognitive impairment, required that family member(s) take part in dignity therapy on their behalf. Qualitative and quantitative methods were applied in determining responses to dignity therapy from direct participants, proxy participants, and healthcare providers (HCPs). RESULTS: Twelve cognitively intact residents completed dignity therapy; 11 cognitively impaired residents were represented in the study by way of family member proxies. The majority of cognitively intact residents found dignity therapy to be helpful; the majority of proxy participants indicated that dignity therapy would be helpful to them and their families. In both groups, HCPs reported the benefits of dignity therapy in terms of changing the way they perceived the resident, teaching them things about the resident they did not previously know; the vast majority indicated that they would recommend it for other residents and their families. SIGNIFICANCE OF RESULTS: This study introduces evidence that dignity therapy has a role to play among the frail elderly. It also suggests that whether residents take part directly or by way of family proxies, the acquired benefits--and the effects on healthcare staff--make this area one meriting further study.

How respect and kindness are experienced at the end of life by nursing home residents.

Respect and kindness are core principles of nursing practice, yet little is known about how they are experienced by nursing home (NH) residents at the end of life. The aim of this study was to examine the factors associated with being treated with respect and kindness in the last month of life as an NH resident. A retrospective survey of 208 bereaved family members was conducted in 21 NHs located in a city in central Canada. The majority of participants indicated that the resident had always been treated with respect or kindness. However, significant differences emerged, with not all family members believing that their loved one had always been treated with respect or kindness. The apparent lapses in care practices are troubling and indicate that steps must be taken to address them.

More than just a task: intimate care delivery in the nursing home.

Purpose: Intimate care procedures, such as bathing and toileting, are often regarded as simple, humble tasks. However, the provision of such care transforms a very private, personal activity into a social process. Understanding this complex process and the psychological impact it has on those providing and receiving care is critical in order to mitigate potential distress. The purpose of this study to examine the experience of delivering and receiving intimate personal care in the NH.Methods: A focused ethnographic approach with participant observation, semi-structured interviews, focus groups and drop-in sessions, document review, and field notes. Data were analysed using constant comparative analysis.Results: Quality care in this context is predicated on the care provider recognition of the emotional impact of care delivery on the care recipient. Our analysis identified that the overarching theme, of providing quality person-centred intimate care, requires creating and maintaining a relational space that promotes integrity.Conclusions: The provision of intimate personal care consists of a complex interplay at the level of resident/care provider interaction (micro level); health care organization (meso level); and policy (macro level). Each of these levels interacts with and influences the other two. The components identified in our model may provide the basis from which to further examine resident experiences of quality intimate personal care.

Learning from dying patients during their final days: life reflections gleaned from dignity therapy.

Dignity therapy is a novel therapeutic approach designed to decrease suffering, enhance quality of life and bolster a sense of dignity for patients approaching death. The benefits of dignity therapy were previously documented in a sample of 100 terminally ill patients. One of the products of dignity therapy is a transcript of the edited therapy session(s). In this qualitative study, 50 of the 100 (17 from Winnipeg, Manitoba, Canada, and 33 from Perth, Australia) dignity therapy transcripts were randomly drawn, and independently coded and analysed by three investigators using a grounded theory approach. The transcripts revealed that dignity therapy serves to provide a safe, therapeutic environment for patients to review the most meaningful aspects of their lives in such a manner that their core values become apparent. The most common values expressed by the patients included 'Family', 'Pleasure', 'Caring', 'A Sense of Accomplishment', 'True Friendship', and 'Rich Experience'. Exemplars of each of these values illustrate the pervasive, defining role of values in our lives. The findings are discussed in terms of values theory, the role of dignity therapy, and consideration of values clarification in clinicians' efforts to enhance the dignity of terminally ill patients.

A Practical Guide for Item Generation in Measure Development: Insights From the Development of a Patient-Reported Experience Measure of Compassion.

BACKGROUND AND PURPOSE: Although various measure development guidelines exist, practical guidance on how to systematically generate items is nascent. This article provides practical guidance on item generation in measure development and the use of a Table of Specifications (TOS) in this process. METHODS: In addition to a review of the literature, the item generation process within an ongoing study to develop a valid and reliable patient-reported measure of compassion is provided. RESULTS: Consensus on an initial pool of 109 items and their response scale was achieved with the aid of a TOS. CONCLUSIONS: Dynamic, experiential, and relational care constructs such as compassion lie at the heart of nursing. Practical guidance on item generation is needed to allow nurses to identify, measure, and improve compassion in research and practice.

Initial Validation of a Patient-Reported Measure of Compassion: Determining the Content Validity and Clinical Sensibility among Patients Living with a Life-Limiting and Incurable Illness.

BACKGROUND: Although compassionate care is considered a cornerstone of quality palliative care, there is a paucity of valid and reliable measures to study, assess, and evaluate how patients experience compassion/compassionate care in their care. OBJECTIVE: The aim was to develop a patient-reported compassion measure for use in research and clinical practice with established content-related validity evidence for the items, question stems, and response scale. METHODS: Content validation for an initial 109 items was conducted through a two-round modified Delphi technique, followed by cognitive interviews with patients. A panel of international Subject Matter Experts (SMEs) and a Patient Advisory Group (PAG) assessed the items for their relevancy to their associated domain of compassion, yielding an Item-level Content Validity Index (I-CVI), which was used to determine content modifications. The SMEs and the PAG also provided narrative feedback on the clarity, flow, and wording of the instructions, questions, and response scale, with items being modified accordingly. Cognitive interviews were conducted with 16 patients to further assess the clarity, comprehensibility, and readability of each item within the revised item pool. RESULTS: The first round of the Delphi review produced an overall CVI of 72% among SMEs and 80% among the PAG for the 109 items. Delphi panelists then reviewed a revised measure containing 84 items, generating an overall CVI of 84% for SMEs and 86% for the PAG. Sixty-eight items underwent further testing via cognitive interviews with patients, resulting in an additional 14 items being removed. CONCLUSIONS: Having established this initial validity evidence, further testing to assess internal consistency, test-retest reliability, factor structure, and relationships to other variables is required to produce the first valid, reliable, and clinically informed patient-reported measure of compassion.

Family presence during resuscitation: Canadian critical care nurses' perspectives.

PURPOSE: As part of a larger online survey examining the practices and preferences of Canadian critical care nurses regarding family presence during resuscitation (FPDR) of adult family members, the purpose of the study was to explicate salient issues about the practice of FPDR identified by nurses who responded to the qualitative portion of the survey. DESIGN: Descriptive, qualitative. METHODS: As part of an online survey, participants were given the opportunity to provide qualitative comments about their personal or professional experiences with FPDR. Data analysis was completed using content analysis and constant comparison techniques. FINDINGS: Of the 944 nurses contacted electronically, 450 completed the survey, for a response rate of 48%. Of these, 242 opted to share qualitative comments regarding their experiences with FPDR. Four major themes emerged from the data: (a) perceived benefits for family members; (b) perceived risks for family members; (c) perceived benefits for healthcare providers; and (d) perceived risks for healthcare providers. CONCLUSIONS: The practice of FPDR impacts both family members and members of the resuscitation team. Nurses weigh these impacts when considering whether or not to bring family members to the bedside. CLINICAL RELEVANCE: The results of this study provide information for practicing clinicians, educators, and administrators regarding the decision-making processes nurses use when considerations of bringing family members to the bedside during resuscitative events are evoked.

Hope in advanced cancer patients.

Individuals diagnosed with advanced cancer frequently experience physical and psychological distress. Hope has been identified as an essential resource in the lives of people with cancer, helping them to cope during times of suffering and uncertainty. Therefore, in order to help bolster hope, health care providers require an understanding of its meaning from the perspective of advanced cancer patients and an awareness of those interventions demonstrated empirically to foster hope in this patient population. This paper summarises salient evidence pertaining to hope in advanced cancer patients and their families or informal caregivers. We examine the challenging issue of how to define hope, discuss the issue of measuring hope and review the state of evidence addressing interventions that may enhance or bolster hope in the face of advanced disease.

When advanced cancer patients won't eat: family responses.

We conducted a grounded theory study examining nutritional care experiences in advanced cancer from the perspective of patients (n = 13), families (n = 23), and health care providers (n = 11) (McClement, 2001). That work generated an inductively derived model that captured important information about adult family members' perceptions and behaviour regarding the nutritional care their terminally ill adult relative received while hospitalized on an inpatient palliative care unit, and has been reported elsewhere (McClement et al, 2003). This article provides a more detailed description of one of the major sub-processes of the model regarding family member responses to declining oral intake and weight loss in a terminally ill relative-the sub-process of 'letting nature take its course: it's best not to eat.' The strategies family members use when letting nature take its course, and the consequences of these strategies for patients, family members and health care providers are reported. Implications for practice and research are provided.

Family satisfaction with care of a dying loved one in nursing homes: what makes the difference?

As part of a larger study examining end-of-life care in nursing homes, qualitative focus groups were conducted with bereaved family members to explicate those factors contributing to satisfaction and dissatisfaction with end-of-life care in the nursing home setting. Content analysis of focus group data revealed two overarching themes that influenced family members' satisfaction with care. These included: (a) ability of staff to recognize signs of imminent dying, and (b) communication and information sharing about the resident's status and plan of care. Family members dissatisfied with their relative's end-of-life care expressed feelings of guilt, anger, and frustration, both while the resident was alive and in the bereavement period. The findings of this study have implications for clinicians committed to delivering quality end-of-life care to residents and their families and provides the basis for educational interventions and quality care improvement initiatives in the long-term care setting.

Assessing Symptoms, Concerns, and Quality of Life in Noncancer Patients at End of Life: How Concordant Are Patients and Family Proxy Members?

CONTEXT: It has become commonplace to use family caregivers as proxy responders where patients are unable to provide information about their symptoms and concerns to health care providers. OBJECTIVES: The objective of this study was to determine the degree of concordance between patients' and family members' reports of patient symptoms and concerns at end of life. METHODS: Sample dyads included a mix of patients residing at home, in a nursing home, in a long-term care facility, or in hospice. Diagnoses included patients with amyotrophic lateral sclerosis (n = 75), chronic obstructive pulmonary disease (n = 52), end-stage renal disease (n = 42), and institutionalized, cognitively intact frail elderly (n = 49). Dyads completed the Patient Dignity Inventory (PDI), the modified Structured Interview Assessment of Symptoms and Concerns in Palliative Care, and Graham and Longman's two-item Quality of Life Scale. RESULTS: Concordance was less than 70% for seven of the 25 PDI items, with the lowest concordance (65.1%) for the item "not being able to continue with my usual routines." For all but one PDI item, discordance was in the direction of family members reporting that the patient was worse off than the patient had indicated. Where discordance was observed on the Structured Interview Assessment of Symptoms and Concerns in Palliative Care and Quality of Life Scales, the trend toward family members overreporting patient distress and poor quality of life continued. CONCLUSION: Understanding discordance between patients and family member reports of symptoms and concerns is a valuable step toward minimizing patient and family burden at end of life.