Evaluation of the Strengthening a Palliative Approach in Long Term Care (SPA-LTC) programme: a protocol of a cluster randomised control trial.

INTRODUCTION: Despite the high mortality rates in long-term care (LTC) homes, most do not have a formalised palliative programme. Hence, our research team has developed the Strengthening a Palliative Approach in Long Term Care (SPA-LTC) programme. The goal of the proposed study is to examine the implementation and effectiveness of the SPA-LTC programme. METHODS AND ANALYSIS: A cross-jurisdictional, effectiveness-implementation type II hybrid cluster randomised control trial design will be used to assess the SPA-LTC programme for 18 LTC homes (six homes within each of three provinces). Randomisation will occur at the level of the LTC home within each province, using a 1:1 ratio (three homes in the intervention and control groups). Baseline staff surveys will take place over a 3-month period at the beginning for both the intervention and control groups. The intervention group will then receive facilitated training and education for staff, and residents and their family members will participate in the SPA-LTC programme. Postintervention data collection will be conducted in a similar manner as in the baseline period for both groups. The overall target sample size will be 594 (297 per arm, 33 resident/family member participants per home, 18 homes). Data collection and analysis will involve organisational, staff, resident and family measures. The primary outcome will be a binary measure capturing any emergency department use in the last 6 months of life (resident); with secondary outcomes including location of death (resident), satisfaction and decisional conflict (family), knowledge and confidence implementing a palliative approach (staff), along with implementation outcomes (ie, feasibility, reach, fidelity and perceived sustainability of the SPA-LTC programme). The primary outcome will be analysed via multivariable logistic regression using generalised estimating equations. Intention-to-treat principles will be used in the analysis. ETHICS AND DISSEMINATION: The study has received ethical approval. Results will be disseminated at various presentations and feedback sessions; at provincial, national and international conferences, and in a series of manuscripts that will be submitted to peer-reviewed, open access journals. TRIAL REGISTRATION NUMBER: NCT039359.

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.

The impact of early palliative care on the quality of life of patients with advanced pancreatic cancer: The IMPERATIVE case-crossover study.

PURPOSE: Pancreatic cancer is a lethal disease. Many patients experience a heavy burden of cancer-associated symptoms and poor quality of life (QOL). Early palliative care alongside standard oncologic care results in improved QOL and survival in some cancer types. The benefit in advanced pancreatic cancer (APC) is not fully quantified. METHODS: In this prospective case-crossover study, patients ≥ 18 years old with APC were recruited from ambulatory clinics at a tertiary cancer center. Patients underwent a palliative care consultation within 2 weeks of registration, with follow up visits every 2 weeks for the first month, then every 4 weeks until week 16, then as needed. The primary outcome was change in QOL between baseline (BL) and week 16, measured by Functional Assessment of Cancer Therapy - hepatobiliary (FACT-Hep). Secondary outcomes included symptom control (ESAS-r), depression, and anxiety (HADS, PHQ-9) at week 16. RESULTS: Of 40 patients, 25 (63%) were male, 28 (70%) had metastatic disease, 31 (78%) had ECOG performance status 0-1, 31 (78%) received chemotherapy. Median age was 70. Mean FACT-hep score at BL was 118.8, compared to 125.7 at week 16 (mean change 6.89, [95%CI (-1.69-15.6); p = 0.11]). On multivariable analysis, metastatic disease (mean change 15.3 [95%CI (5.3-25.2); p = 0.004]) and age < 70 (mean change 12.9 [95%CI (0.5-25.4); p = 0.04]) were associated with improved QOL. Patients with metastatic disease had significant improvement in symptom burden (mean change -7.4 [95%CI (-13.4 to -1.4); p = 0.02]). There was no difference in depression or anxiety from BL to week 16. CONCLUSION: Palliative care should be integrated early in the journey for patients with APC, as it can improve QOL and symptom burden. TRIAL REGISTRATION: Clinicaltrials.gov identifier: NCT03837132.

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.

Dignity of the patient--family unit: further understanding in hospice palliative care.

OBJECTIVES: This study aimed to explore the construct of dignity of the patient-family dyad in hospice palliative care, as well as its influencing factors from the perspective of hospice palliative care staff. METHODS: A qualitative descriptive study was conducted with 34 staff members from a residential hospice in Amherst, USA, and an inpatient palliative care unit in Winnipeg, Canada, between September 2013 and December 2016. Data were collected through semistructured interviews and were analysed using the thematic analysis approach. RESULTS: Findings suggested that staff members viewed dignity as something that is reciprocally supported within the patient-family unit. Themes including respect, comfort, privacy, being informed and quality family time were common in the conceptualisation of dignity in patients and families; themes of being human and being self, autonomy and living with dignity were uniquely used to conceptualise patient dignity. Themes solely constituting family dignity included being included in care, being capable and being treated fairly. Cultural considerations, environmental factors, teamwork and patient/family-staff relationship were the factors identified by staff members that affected dignity in hospice palliative care. CONCLUSION: Findings of this study provide insights into the development of strategies to support the dignity of the patient-family unit in hospice palliative care.

Dignity at the end of life in traditional Chinese culture: Perspectives of advanced cancer patients and family members.

PURPOSE: This study aimed to explore the meaning of patient dignity at the end of life in traditional Chinese culture from perspectives of advanced cancer patients and their family members. METHOD: A descriptive qualitative study was conducted with 15 advanced cancer patients and 10 family members in a tertiary hospital in Beijing, China between March and July 2019. Data were collected through face-to-face semi-structured interviews and were analyzed using thematic analysis. RESULTS: Dignity at the end of life in traditional Chinese culture were classified into four categories: (1) cultural-specific dignity, including themes of stigma-free, moral traits and "face"; (2) self-related dignity, including themes of staying healthy and alive, living a normal life as a normal person, spiritual peace, personal value and privacy; (3) family-related dignity, including themes of concerns to the family, not being a burden to the family, and family support; and (4) care- and treatment-related dignity, including themes of being respected, high quality service and disclosure of information and consent-based decision making. CONCLUSIONS: Patient dignity at the end of life in traditional Chinese culture was relevant to the culture, the individuals, their family, and the care and treatment they received. Patient dignity is supposed to be supported by collaborative efforts from the family and healthcare professionals, and meanwhile taking patient's cultural background and personal wishes and values into account.

Adipose Tissue and Cancer Cachexia: What Nurses Need to Know.

The purpose of this article is to discuss the different types of adipose tissue involved in cachexia and describe their role in contributing to increased energy expenditure and negative energy balance. Armed with this knowledge, nurses will be better positioned to understand the clinical picture of cachexia, appreciate the rationale for proposed therapeutic interventions, and confidently dialogue with patients, families, and members of interdisciplinary health care teams about this prevalent condition.

An Exploration of the Challenges for Oncology Nurses in Providing Hospice Care in Mainland China: A Qualitative Study.

OBJECTIVE: Although there has been an increasing emphasis on assisting nurses with providing quality hospice care to patients and family members, few studies have explored the challenges that oncology nurses face when delivering hospice care in the Chinese cultural context. The objective of this study was to elucidate the challenges for oncology nurses in providing hospice care for terminally ill cancer patients in mainland China. METHODS: A descriptive qualitative study with purposive sampling using audio-recorded fact-to-face interviews. A total of 13 hospice nurses from four hospitals in Beijing, mainland China, participated in this study. Data collection was from April to June 2019, and thematic analysis method was used to analyze the data. RESULTS: Challenges identified by hospice nurses in providing hospice care for terminally ill cancer patients included: (1) public misperception on hospice care, (2) lack of financial support, (3) fear of medical disputes and legal action, (4) shortage of human resources, (5) insufficient specialization and lack of "hierarchy" training on hospice care, (6) inexperience in communication skills, and (7) lack of self-care and stress management skills. CONCLUSIONS: It is imperative and critical for the government, health-care institutions, and hospice care providers to clearly understand the challenges that currently exist in providing hospice nursing. Joint efforts are needed to overcome those challenges, which might result in qualified hospice nurses and provide evidence for further development of hospice care in mainland China.

Clarifying the information and support needs of family caregivers of nursing home residents with advancing dementia.

BACKGROUND: Research has identified inadequacies in the quality and quantity of dementia-related information, particularly end-of-life information provided to those living with dementia and their family caregivers. The purpose of this study was to identify what types of information family caregivers of persons living with dementia in nursing homes would deem useful in preparing them for their relative's end-of-life and assist them to make decisions about care along the dementia trajectory. METHODS: The qualitative methodology of interpretive description was used to guide the study in which semi-structured interviews were conducted with nursing home staff in clinical roles (e.g., nurses, health care aides, social workers, speech language pathologists; N = 26), palliative care clinicians (N = 7), and bereaved family caregivers of persons with dementia (N = 17). Data were analyzed using thematic analysis. FINDINGS: Eight substantive categories essential to meeting family members' needs for information and preparing them for the future were identified including: (i) dementia in general, (ii) dementia toward the end-of-life, (iii) care of persons dying with dementia, (iv) the role of family caregiver as decision maker, (v) sustaining connection, (vi) emotional impact of dementia on caregivers, (vii) relationships with staff, and (viii) general questions about life in a NH. CONCLUSION: Our findings suggest that family caregivers of nursing home residents with dementia have unique information and support needs, some disease specific, others more related to life in a nursing home in general. Health care providers need to support and encourage dementia literacy for family caregivers. A key strategy is to proactively broach these topic areas, as too often family caregivers may not recognize or value their need for information.

Healthcare providers perspectives on compassion training: a grounded theory study.

BACKGROUND: There is little concrete guidance on how to train current and future healthcare providers (HCPs) in the core competency of compassion. This study was undertaken using Straussian grounded theory to address the question: "What are healthcare providers' perspectives on training current and future HCPs in compassion?" METHODS: Fifty-seven HCPs working in palliative care participated in this study, beginning with focus groups with frontline HCPs (n = 35), followed by one-on-one interviews with HCPs who were considered by their peers to be skilled in providing compassion (n = 15, three of whom also participated in the initial focus groups), and end of study focus groups with study participants (n = 5) and knowledge users (n = 10). RESULTS: Study participants largely agreed that compassionate behaviours can be taught, and these behaviours are distinct from the emotional response of compassion. They noted that while learners can develop greater compassion through training, their ability to do so varies depending on the innate qualities they possess prior to training. Participants identified three facets of an effective compassion training program: self-awareness, experiential learning and effective and affective communication skills. Participants also noted that healthcare faculties, facilities and organizations play an important role in creating compassionate practice settings and sustaining HCPs in their delivery of compassion. CONCLUSIONS: Providing compassion has become a core expectation of healthcare and a hallmark of quality palliative care. This study provides guidance on the importance, core components and teaching methods of compassion training from the perspectives of those who aim to provide it-Healthcare Providers-serving as a foundation for future evidence based educational interventions.

"Who would want to die like that?" Perspectives on dying alone in a long-term care setting.

The discourse of dying alone is negatively weighted and models of a good death identify not dying alone as a key outcome. Understanding why dying alone is viewed negatively and its effects on care is a priority. In separate focus groups with long-term care residents, family caregivers, and staff, we identified evidence for four different perspectives on the importance of presence at the time of death. However, while each individual had their own unique perspective on dying alone, the predominant view expressed across respondent groups was that having human connection near the end of one's life was important.

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.

Healthcare providers' perspectives on perceived barriers and facilitators of compassion: Results from a grounded theory study.

AIMS AND OBJECTIVES: To explore healthcare provider perspectives and experiences of perceived barriers and facilitators of compassion. BACKGROUND: Compassion is considered a component of quality health care that healthcare providers are increasingly expected to provide. While there have been some studies exploring facets of healthcare providers' perspectives on the barriers and facilitators to providing compassion, a comprehensive understanding based on direct reports from healthcare providers is lacking. DESIGN: Data were collected via focus groups and semi-structured interviews. Data was analyzed in accordance with Straussian grounded theory. METHODS: Semistructured focus groups with frontline healthcare providers and individual interviews with peer-nominated exemplary compassionate care providers were audio-recorded, professionally transcribed and analysed. Fifty-seven participants were recruited from three healthcare settings within both rural and urban settings in Alberta, Canada, using convenience, snowball and theoretical sampling. RESULTS: Qualitative analysis of the data generated two categories and associated themes and subthemes delineating perceived barriers and facilitators to compassion. The first category, challenges to compassion, reflects participants' discomfort associating the notion of barriers to compassion and contained several themes participants conceptualised as challenges: personal challenges, relational challenges, systemic challenges and maladaptive responses. The second category, facilitators of compassion, included the themes of personal facilitators, relational facilitators, systemic facilitators and adaptive responses of intentional action. CONCLUSION: Although participants described certain factors such as system and time constraints along with interaction styles of patients and families that can challenge healthcare provider compassion, these challenges were not considered insurmountable. While acknowledging these as challenges, participants identified healthcare providers themselves, including their responses towards the identified challenges of compassion, as significant factors in this process-a novel finding from this study. This study provides insight into healthcare providers' perspectives on the notion of barriers and facilitators in the provision of compassion. RELEVANCE TO CLINICAL PRACTICE: This study provides a blueprint for optimising compassion on a personal, relational and system level.

Development and evaluation of the Dignity Talk question framework for palliative patients and their families: A mixed-methods study.

BACKGROUND: Effective patient-family communication can reduce patients' psychosocial distress and relieve family members' current suffering and their subsequent grief. However, terminally ill patients and their family members often experience great difficulty in communicating their true feelings, concerns, and needs to each other. AIM: To develop a novel means of facilitating meaningful conversations for palliative patients and family members, coined Dignity Talk, explore anticipated benefits and challenges of using Dignity Talk, and solicit suggestions for protocol improvement. DESIGN: A convergent parallel mixed-methods design. Dignity Talk, a self-administered question list, was designed to prompt end-of-life conversations, adapted from the Dignity Therapy question framework. Participants were surveyed to evaluate the Dignity Talk question framework. Data were analyzed using qualitative and quantitative methods. SETTING/PARTICIPANTS: A total of 20 palliative patients, 20 family members, and 34 healthcare providers were recruited from two inpatient palliative care units in Winnipeg, Canada. RESULTS: Most Dignity Talk questions were endorsed by the majority of patients and families (>70%). Dignity Talk was revised to be convenient and flexible to use, broadly accessible, clearly stated, and sensitively worded. Participants felt Dignity Talk would be valuable in promoting conversations, enhancing family connections and relationships, enhancing patient sense of value and dignity, promoting effective interaction, and attending to unfinished business. Participants suggested that patients and family members be given latitude to respond only to questions that are meaningful to them and within their emotional capacity to broach. CONCLUSION: Dignity Talk may provide a gentle means of facilitating important end-of-life conversations.

Correction: Dignity and Distress towards the End of Life across Four Non-Cancer Populations.

[This corrects the article DOI: 10.1371/journal.pone.0147607.].

Keep in Touch (KIT): feasibility of using internet-based communication and information technology in palliative care.

BACKGROUND: Confinement to an in-patient hospital ward impairs patients' sense of social support and connectedness. Providing the means, through communication technology, for patients to maintain contact with friends and family can potentially improve well-being at the end of life by minimizing social isolation and facilitating social connection. This study aimed to explore the feasibility of introducing internet-based communication and information technologies for in-patients and their families and to describe their experience in using this technology. METHODS: A cross-sectional survey design was used to describe patient and family member experiences in using internet-based communication technology and health care provider views of using such technology in palliative care. Participants included 13 palliative in-patients, 38 family members, and 14 health care providers. An iPad or a laptop computer with password-protected internet access was loaned to each patient and family member for about two weeks or they used their own electronic devices for the duration of the patient's stay. Quantitative and qualitative data were collected from patients, families, and health care providers to discern how patients and families used the technology, its ease of use and its impact. Descriptive statistics and paired sample t-tests were used to analyze quantitative data; qualitative data were analyzed using constant comparative techniques. RESULTS: Palliative patients and family members used the technology to keep in touch with family and friends, entertain themselves, look up information, or accomplish tasks. Most participants found the technology easy to use and reported that it helped them feel better overall, connected to others and calm. The availability of competent, respectful, and caring technical support personnel was highly valued by patients and families. Health care providers identified that computer technology helped patients and families keep others informed about the patient's condition, enabled sharing of important decisions and facilitated access to the outside world. CONCLUSIONS: This study confirmed the feasibility of offering internet-based communication and information technologies on palliative care in-patient units. Patients and families need to be provided appropriate technical support to ensure that the technology is used optimally to help them accomplish their goals.

Sympathy, empathy, and compassion: A grounded theory study of palliative care patients' understandings, experiences, and preferences.

BACKGROUND: Compassion is considered an essential element in quality patient care. One of the conceptual challenges in healthcare literature is that compassion is often confused with sympathy and empathy. Studies comparing and contrasting patients' perspectives of sympathy, empathy, and compassion are largely absent. AIM: The aim of this study was to investigate advanced cancer patients' understandings, experiences, and preferences of "sympathy," "empathy," and "compassion" in order to develop conceptual clarity for future research and to inform clinical practice. DESIGN: Data were collected via semi-structured interviews and then independently analyzed by the research team using the three stages and principles of Straussian grounded theory. SETTING/PARTICIPANTS: Data were collected from 53 advanced cancer inpatients in a large urban hospital. RESULTS: Constructs of sympathy, empathy, and compassion contain distinct themes and sub-themes. Sympathy was described as an unwanted, pity-based response to a distressing situation, characterized by a lack of understanding and self-preservation of the observer. Empathy was experienced as an affective response that acknowledges and attempts to understand individual's suffering through emotional resonance. Compassion enhanced the key facets of empathy while adding distinct features of being motivated by love, the altruistic role of the responder, action, and small, supererogatory acts of kindness. Patients reported that unlike sympathy, empathy and compassion were beneficial, with compassion being the most preferred and impactful. CONCLUSION: Although sympathy, empathy, and compassion are used interchangeably and frequently conflated in healthcare literature, patients distinguish and experience them uniquely. Understanding patients' perspectives is important and can guide practice, policy reform, and future research.

Cancer Cachexia and its Impact on Patient Dignity: What Nurses Need to Know.

Noted physician, Sr. William Osler, is credited with saying, "Care more particularly for the individual patient than for the special features of the disease". Osler understood that each patient for whom we care is first and foremost a person, who also happens to be living with a particular illness. In addition to understanding the nature of the patient's illness, therefore, it is also critically important that we come to understand the patient's unique story and set of circumstances. Doing so allows us to engage with patients in a way that affirms their sense of dignity and personhood. Drawing on the exemplar of cancer cachexia, this editorial reminds clinicians of the importance of Osler's sage advice to attend to patient dignity and personhood, and provides nurses with direction about how they can do that in practice.

Keep in touch (KIT): perspectives on introducing internet-based communication and information technologies in palliative care.

BACKGROUND: Hospitalized palliative patients need to keep in touch with their loved ones. Regular social contact may be especially difficult for individuals on palliative care in-patient units due to the isolating nature of hospital settings. Technology can help mitigate isolation by facilitating social connection. This study aimed to explore the acceptability of introducing internet-based communication and information technologies for patients on a palliative care in-patient unit. METHODS: In the first phase of the Keep in Touch (KIT) project, a diverse group of key informants were consulted regarding their perspectives on web-based communication on in-patient palliative care units. Participants included palliative patients, family members, direct care providers, communication and information technology experts, and institutional administrators. Data was collected through focus groups, interviews and drop-in consultations, and was analyzed for themes, consensus, and major differences across participant groups. RESULTS: Hospitalized palliative patients and their family members described the challenges of keeping in touch with family and friends. Participants identified numerous examples of ways that communication and information technologies could benefit patients' quality of life and care. Patients and family members saw few drawbacks associated with the use of such technology. While generally supportive, direct care providers were concerned that patient requests for assistance in using the technology would place increased demands on their time. Administrators and IT experts recognized issues such as privacy and costs related to offering these technologies throughout an organization and in the larger health care system. CONCLUSIONS: This study affirmed the acceptability of offering internet-based communication and information technologies on palliative care in-patient units. It provides the foundation for trialing these technologies on a palliative in-patient unit. Further study is needed to confirm the feasibility of offering these technologies at the bedside.