CONTEXT: Chinese medicine modalities, including acupuncture and Chinese herbal medicine (CHM), have been used as palliative interventions among cancer patients. More research should be conducted to confirm their effectiveness.
OBJECTIVES: To prioritize Chinese medicine clinical research questions for cancer palliative care.
METHODS: Twelve international experts, including physicians, Chinese medicine practitioners, nurses and clinical research methodologists (n=3 from each category) from Asia, North America, Australia and Europe participated in a two-round Delphi survey for prioritizing 29 research questions identified from existing systematic reviews. The experts were asked to i) rate clinical importance of answering the questions on a 9-point Likert scale; ii) provide qualitative comments on their ratings; and iii) suggest outcome measurement approaches.
RESULTS: Eight research priorities reached positive consensus after the two-round Delphi survey. Six of the priorities focused on acupuncture and related therapies; of which median ratings on importance ranged from 7.0 to 8.0 (interquartile range (IQR): 1.00 to 2.50), and the percentage agreement ranged from 75.0% to 91.7%. The remaining two priorities related to CHM; with median ratings ranged from 7.0 to 8.0 (IQR: 1.00 to 1.50), with percentage agreement ranged from 75.0% to 83.3%. Neither positive nor negative consensus was established among the remaining 21 questions.
CONCLUSION: The findings will inform rational allocation of scarce research funding for evaluating the effectiveness of Chinese medicine for cancer palliative care, especially on acupuncture and related therapies. Further research on herb safety and herb-drug interaction should be performed before conducting international trials on CHM.
OBJECTIVE: Care homes are a common place of death for older adults, especially those with complex health needs or dementia. Representative, internationally comparable data on care home facilities and their residents is needed to monitor health and wellbeing in this population. Identification and collection of data from care homes can be challenging and often underreported. This paper draws on the experiences of the PACE study, a cross sectional mortality follow back study conducted in six European countries.
RESULTS: Multiple challenges were encountered in creating a sampling framework and contacting, recruiting and retaining care homes in the PACE study. Recruiting a randomly identified, representative cohort from a stratified sampling framework was problematic, as was engaging with care homes to ensure high response rates. Variation in the funding of care homes across the six countries involved in the study may explain the additional challenges encountered in England. Awareness of the challenges encountered in England in implementing an international study in care homes can inform the design and implementation of future studies within care homes. Further discussion is needed to determine the barriers and facilitators to conducting research in care homes, and how this is shaped by the focus of the study.
Background: Spiritual distress among family members of patients in the intensive care unit (ICU) has not been well characterized. This limits clinicians' understanding of how to best offer support.
Objective: To explore how family members experience spiritual distress, and how it is recognized and support offered within the ICU context.
Design: A qualitative study involving interviews and focus groups between May 2016 and April 2017.
Setting/Subjects: Family members of ICU patients (n = 18), spiritual health practitioners (n = 10), and an interprofessional group of clinicians who work in the ICU (n = 32).
Measurements: Transcribed data were analyzed using interpretive description.
Results: The experience of spiritual distress was variably described by all three groups through concepts, modulators, expressions and manifestations, and ways in which spiritual distress was addressed. Concepts included loss of meaning, purpose and connection, tension in beliefs, and interconnected distress. Modulators were related to the patient and family context, the ICU context, and the relational context. Expressions and manifestations were unique and individual, involving verbal expressions of thoughts and emotions, as well as behavioral manifestations of coping. Clinical strategies for addressing spiritual distress were described through general principles, specific strategies for discussing spiritual distress, and ways in which spiritual support can be offered.
Conclusions: Our study provides a rich description of how spiritual distress is experienced by family members of ICU patients, and how spiritual health practitioners and clinicians recognize spiritual distress and offer support. These findings will help inform clinician education and initiatives to better support families of critically ill patients.
PURPOSE: It has been shown that integrating palliative care (PC) in intensive care unit (ICU) improves end-of-life care (EOLC), but very few Canadian hospitals have adopted this practice. Our study aims to evaluate the perceived quality of EOLC at participating institutions and explore barriers toward ICU-PC integration.
MATERIALS AND METHODS: A self-administered questionnaire was developed by a multidisciplinary team. Survey items were extracted from published quality indicators in EOLC and barriers to ICU-PC integration. The study took place at 2 academic institutions. Participants consisted of physicians and nurses, ICU administrators, and allied health workers.
RESULTS: An overall response of 45% was achieved. Of total, 85% of the respondents were ICU nurses. The following main themes were identified: (1) There is a poor presence of PC in the ICU and 78% of respondents felt that increasing ICU-PC integration will improve quality of EOLC; (2) the main barrier to integration was unrealistic patient and/or family expectations; and (3) criteria-triggered consultation to PC was the most feasible way to achieve integration.
CONCLUSION: Our findings indicate that the majority of respondents perceive that the presence of PC in ICU will improve EOLC. Future quality improvement initiatives can focus on developing a set of criteria for triggering PC consults.
BACKGROUND: Although the effectiveness of early palliative care for patients with advanced cancer has been demonstrated in several trials, there has been no detailed published description of an early palliative care intervention.
METHOD: In this paper, we delineate the iterative conception and systematic evaluation of a complex intervention called team-based outpatient early palliative care (TO-EPC), and describe the components of the intervention. The intervention was developed based on palliative care theory, review of previous palliative care interventions and practice guidelines. We conducted feasibility testing and piloting of TO-EPC in a phase 2 trial, followed by evaluation in a large cluster randomised trial and qualitative research with patients and caregivers. The qualitative research informed the iterative refinement of the intervention.
RESULTS: Four principles and four domains of care constitute a conceptual framework for TO-EPC. The main domains of care are: coping and support, symptom control, decision-making and future planning. The main principles are that care is flexible, attentive, patient-led and family-centred. The most prominent domain for the initial consultation is coping and support; follow-up visits focus on symptom control, decision-making to maximise quality of life and future planning according to patient readiness. Key tasks are described in relation to each domain.
CONCLUSION: The description of our intervention may assist palliative care teams seeking to implement it, researchers wishing to replicate or build on it and oncologists hoping to adapt it for their patients.
Background: The term "palliative care" (PC) has often been found to have a negative connotation leading some to suggest rebranding and some services to change their name. Perceptions of the PC community about the term remain largely unexplored.
Objective: To explore how PC researchers/academics perceive the term is the objective of this study.
Design: This is a cross-sectional survey of attendees to the 10th World Research Congress of the EAPC. The questionnaire covered areas of academic activity, including the use of the term. We analyzed data through descriptive and nonparametric statistics and open responses through content analysis.
Participants: Academics and researchers in PC were the participants in this study.
Results: Of 318 respondents, the majority were women (65%), physicians (48%), and had a postgraduate degree (90%). For 40%, the term hindered the positioning of PC, 28% worried about using the term, and 55% did not discuss these difficulties. We found significant differences between responses and several demographics (e.g., younger age and higher likelihood of worrying about the term). Through open responses, we identified that the term is widely in use, and that its limitations are seen as a cultural by-product, and not as something that a name change would solve.
Conclusions: Senior PC academics, researchers, and clinicians have an onus to ensure that colleagues with limited PC experience have the opportunity to discuss and explore the impact of the term on the practice of research. Regarding the term itself, the community's views are conclusive: although using the term will remain a difficult task, the field's identity is in the name.
PURPOSE: Bereavement research has helped to improve end-of-life practices in the ICU. However, few studies have explored bereaved relatives experience of research participation in this context. We aimed to explore the experience of bereaved relatives' participation in the ARREVE study which included three telephone follow-up calls to complete several quantitative tools.
METHODS: Volunteer relatives who participated in the 12-month follow-up call completed a questionnaire about research participation that included ten open-ended questions so that respondents could use their own words and thoughts. These open-ended questions were analyzed using qualitative analysis that examines themes within the data.
RESULTS: 175/311 relatives completed the questionnaire. Three themes were derived from the thematic analysis: (1) struggling: reactivation of emotional distress associated with the ICU experience and the loss is frequent, specifically during the 1st follow-up call. (2) Resilience: as time goes by, research participation becomes increasingly positive. The calls are a help both in giving meaning to the relatives' experience and in accepting the loss. (3) Recognition: research calls can compensate for the absence of support during bereavement.
CONCLUSION: Although some emotional difficulties must be acknowledged, bereavement research is overall associated with benefits, by facilitating emotional adjustments, meaning-making and resilience. Lack of support and social isolation during bereavement are frequent experiences, revealing that support strategies for bereaved relatives should be developed after the loss of a loved one in the ICU.
BACKGROUND AND OBJECTIVES: Deprescribing may be particularly relevant in older people with limited life expectancy. In order to effectively carry out deprescribing in this population, it is important to understand the perspectives of the full spectrum of health care professionals (HCPs) involved in the management of these patients' medication. Thus, we aimed to explore different HCPs' perspectives on deprescribing in older patients with limited life expectancy.
RESEARCH DESIGN AND METHODS: Six qualitative focus group interviews were conducted using a semistructured approach. The groups comprised HCPs from both primary and secondary care, including family physicians (FPs), geriatricians, clinical pharmacologists, clinical pharmacists, nurses, and health care assistants. Interviews were audio recorded and transcribed verbatim. Results were analyzed using systematic text condensation.
RESULTS: A total of 32 HCPs participated in the study (median age of 40.5 years; 22% male). The analysis elicited three main themes related to HCPs' perspectives on deprescribing in older patients with limited life expectancy: (a) Approaching deprescribing, (b) Taking responsibility, and (c) Collaboration across professions. Within themes, subthemes were identified and analyzed.
DISCUSSION AND IMPLICATIONS: Our results imply that different groups of HCPs consider deprescribing an essential aspect of providing good care for older people with limited life expectancy and find that all HCPs play a crucial role in the deprescribing process, with FPs having the primary responsibility. In order to facilitate deprescribing among this population, however, the collaboration between different HCPs should be improved.
BACKGROUND: The Veterans Health Administration (VHA) provides care to the one of the largest cohorts of patients with advanced liver disease (ALD) in the USA.
AIMS: We performed a national survey to assess system-wide strengths and barriers to care for Veterans with ALD in this national integrated healthcare setting.
METHODS: A 52-item survey was developed to assess access and barriers to care in Veterans with ALD. The survey was distributed to all VHA medical centers in 2015. Results were analyzed using descriptive statistics.
RESULTS: One hundred and fifty-three sites responded to this survey. Multidisciplinary services were available on-site at > 80% of sites. Ninety-five percent of sites had mental health and addictions treatment available, with 14% co-locating these services within the liver clinic. Few sites (< 25%) provided pharmacologic treatment for alcohol use disorder in primary care or hepatology settings. Seventy-two percent of sites reported at least one barrier to liver-related care. Of the sites reporting at least one barrier, 53% reported barriers to liver transplant referral, citing complex processes and lack of staff/resources to coordinate referrals. Palliative care was widely available, but 61% of sites reported referring < 25% of their patients with ALD for palliative services.
CONCLUSION: Multidisciplinary services for Veterans with ALD are widely available at VHA sites, though barriers to optimal care remain.
Opportunities for improvement include the expansion of providers with hepatology expertise, integrating pharmacotherapy for alcohol use disorder into hepatology and primary care, streamlining the transplant referral process, and expanding palliative care referrals for patients with ALD.
OBJECTIVE: The EORTC QOL Group has recently completed the cross-cultural development and validation of a standalone measure of spiritual well-being (SWB) for cancer patients receiving palliative care: the EORTC QLQ-SWB32. The measure includes four scales: Relationships with Others, Relationship with Self, Relationship with Someone or Something Greater, and Existential, plus a Global-SWB item. This paper reports on further research investigating relationships between sex, age and SWB for patients receiving palliative care for cancer-adjusting for other socio-demographic, clinical and function variables, including WHO performance status and EORTC QLQ-C15-PAL emotional and physical function scores.
METHODS: Cross-sectional data from the validation study were used, and chi-square, independent t tests, Mann-Whitney U tests and multiple regression analyses applied.
RESULTS: The study included 451 participants with advanced and incurable cancer, from 14 countries. Adjusted analyses found better scores for female participants than males on three of the four EORTC QLQ-SWB32 subscales; Relationship with others, Relationship with Someone or Something Greater and Existential plus Global-SWB. Older age was positively associated with better Relationship with Self.
CONCLUSION: The findings from our participants suggest that it might be beneficial if healthcare providers seeking to address patients' spiritual needs pay particular attention to male patients, younger patients and those with poor emotional functioning.
In June 2015, the Supreme Court of Canada struck down the Criminal Code's prohibition on assisted death. Just over a year later, the federal government crafted legislation to entrench medical assistance in dying (MAiD), the term used in Canada in place of physician-assisted death. Notably, Canada became the first country to allow nurse practitioners to act as assessors and providers, a result of a strong lobby by the Canadian Nurses Association. However, a legislated approach to assisted death has proven challenging in a number of areas. Although it facilitates a degree of accountability, precision and accessibility, it has also resulted in particular challenges negotiating the diverse perspectives of such a morally contentious act. One of these challenges is the tendency to conflate what is legal and what is moral in a modern liberal constitutionalism that places supreme value on autonomy and choice. Such a conflation tends to render invisible the legal and moral/ethical considerations necessary for nurses and nurse practitioners to remain ethical actors. In this paper, we introduce this conflation and then discuss the process of lawmaking in Canada, including the legalization of MAiD and the contributions of nursing to that legalization. We then engage in a hypothetical dialogue about the legal and moral/ethical implications of MAiD for nursing in Canada. We conclude with an appeal for morally sustainable workspaces that, when implementing MAiD, appropriately balance patient choices and nurses' moral well-being.
Though the dying process may offer an opportunity for truth telling and atonement, reconciliation and expressions of love, it may also allow a space for life to go on just as it was. If we’re lucky, we’ll continue to live as we always did until the very end.
We present three datasets from a project about the relationship between death anxiety and religiosity. These include data from 1,838 individuals in the United States (n = 813), Brazil (n = 800), Russia (n = 800), the Philippines (n = 200), South Korea (n = 200), and Japan (n = 219). Measures were largely consistent across samples: they include measures of death anxiety, experience of and exposure to death, religious belief, religious behaviour, religious experience, and demographic information. Responses have also been back-translated into English where necessary, though original untranslated data are also included.
Discussions about assisted suicide have hitherto been based on accounts of dignity conceived only as an inherent value or as a status; accounts of dignity in which it appears as a (contingent) attitude, by contrast, have been neglected. Yet there are two good reasons to consider dignity to be an attitude. First, this concept of dignity best allows us to grasp a crucial aspect of everyday language: people often express fears of losing their dignity-and it is not possible to explain this with an account in which dignity is inherent. Second, such a concept allows us to adduce new argumentation where the argument based on status ends. Dignity considered as a status provides grounds to argue for the moral permissibility of assisted suicide, in the sense that in such an account individuals possess the normative power to waive their right to life. But the question then remains of how to decide what counts as a good reason for assisted suicide-and this is where an argument based on dignity as an attitude can provide illumination.
BACKGROUND: Caring for someone with dementia can be physically and emotionally difficult. Acting as a caregiver can make it difficult to access sources of support, particularly in the later stages of dementia. This paper reports the development and presents the targets (subject areas) and components of a prototype website to support family caregivers of a person with dementia towards the end of life.
METHODS: Adopting an iterative approach and co-production methods the development process consisted of four stages: Stage1-Synthesis of data: three sources of data (interviews, systematic review and theory) were synthesised using tabulation, to identify the targets of the prototype; Stage2-Identifying intervention targets and components: a research development group (health practitioners, a family caregiver and academic experts) met to discuss the development, using a modified nominal group process, refining the synthesis from stage 1; Stage3-Developing the intervention prototype: an outline of the prototype was developed based on stage 1 and 2; and Stage4-User testing: interviews with caregivers testing the prototype website.
RESULTS: Qualitative interviews with caregivers identified four targets for the intervention: 1) feeling prepared and equipped; 2) feeling connected and supported; 3) valuing themselves as a caregiver and as an individual; 4) maintaining control of the caring situation and being the coordinator of care. The systematic review provided evidence on how and what components could address these targets, including providing information, peer support, contact with professionals, and psychological support. Theory helped to narrow the focus within each of these targets. Active discussion with the research development group and end users provided an outline of the prototype website. The prototype website presented addresses these targets with written information, videos from other caregivers, and peer and professional support sections. The subject areas covered included expectations at the end of life, support with day-to-day caring, care planning, and communication.
CONCLUSIONS: This paper provides a detailed account of the development process of a prototype website for caregiver support. The transparent methodology and key lessons learnt from developing the prototype should help those who are developing similar interventions, across complex, progressive conditions and not just limited to dementia.
Few studies have investigated palliative and end-of-life care processes among young adults (YAs), aged 18-34 years, who died of cancer. This retrospective study used a natural language processing algorithm to identify documentation and timing of four process measures in YA cancer decedents' medical records: palliative care involvement, discussions of goals of care, code status, and hospice. Among 2878 YAs, 138 had a recorded date of death. In this group, 54.3% had at least one process measure documented early (31-180 days before death), 18.0% had only late documentation of process measures (0-30 days), and 27.5% had none documented.
In palliative care, opioids and other controlled drugs are among the most commonly used and important medications. Opioids are associated with significant risk of dependence and misuse. In many developed countries, there is an epidemic of prescription opioid misuse and overdose deaths. Palliative care has a critical role educating patients about the safe use of opioids, providing universal screening and close monitoring, and prescribing opioids appropriately balancing the risks and benefits. This is particularly important in the era of early palliative care, when patients have much longer survival and potentially greater risk of misuse while on chronic opioid therapy. Here, we provided a critical appraisal of opioid use in the context of opioid crisis and early palliative care. We also present a pragmatic 10-step approach for the judicious use of opioids.
This article elaborates on Robert Kastenbaum’s death system analysis by explaining social change efforts among Ecological Death Advocates (EDAs), a diverse group of designers, scientists, spiritualists, and entrepreneurs who seek to develop more environmentally sensitive and humanistic alternatives to contemporary death management practices. Drawing from online and documentary data, we highlight EDAs claims about problems with conventional death management and the solutions they propose. Specifically, EDAs challenge hyperrationalized and professionalized death management practices by advocating for more ecologically benign approaches that link past traditions with new technological innovations to better align death practices with personal and community needs. We theorize EDA reform efforts as an aspect of “death-system” politics to carve out cultural, economic, and political space for alternative end-of-life decisions that better reflect broad ecological sensibilities and changing attitudes toward death.
The objective of this mixed methods study was to evaluate the feasibility and acceptability of using a virtual world educational environment for interprofessional health professions students learning about palliative care. Graduate students (n = 35) from five different health professions programs (medicine, nursing, nutrition, physical therapy, and social work) across two educational institutions participated in a small-group immersive educational experience focused on palliative care in the virtual world of Second Life. Collected data included pre and post surveys of interprofessional attitudes using previously-published questionnaires as well as student reflective writing and photographs about their experience. We found it was feasible to create and deliver an interprofessional educational experience in palliative care in a virtual world environment. The educational experience was acceptable to participants, with an improvement in attitudes toward interprofessional education and interprofessional teamwork after a single virtual world educational session, based on both quantitative and qualitative results. Students found the virtual world environment acceptable for interprofessional education focused on palliative care, based on qualitative results. As health professions schools develop interprofessional education curricula, the use of virtual world technology may be an important modality to consider, to effectively and conveniently bring interprofessional learners together.
Aim: Millions of new cancer cases are diagnosed each year. Patients often become hopeless during the disease. This study aimed to develop a short-intervention instrument targeted to raise hope in cancer patients.
Methods: Using a panel of experts, an instrument was developed, which consisted of 11 counseling items. The instrument was applied to a sample of 153 palliative care cancer patients randomized into three groups (G1: instrument applied by Rater 1, G2: control, and G3: instrument applied by Rater 2). Application of the instrument required 20-30 minutes. Using the Herth Hope Index (HHI) scores as the main outcome, changes over time (baseline, 1-hour, and one-week) were evaluated.
Results: The mean baseline HHI scores were 41.38 ±4.46. The HHI scores were statistically similar at the baseline (p>0.05) but significantly different at one hour and one week in favor of the G1 and G3 groups (p<0.001). In G1, the HHI significantly increased from baseline to one-hour measurements (t=-12.413, p<0.001) and remained unchanged at one week (t=1.088, p=0.282). Similarly, there was a significant increase in the HHI scores from baseline to one-hour measurements in G3 (t=-9.144, p<0.001), which remained unchanged between one hour and one week (t=-0.099, p=0.921).
Conclusion: This study demonstrated the effectiveness of a structured, short counseling intervention in increasing hope among palliative care cancer patients.