Palliative Care Research Research Articles

The COMFORT Communication Model: A Nursing Resource to Advance Health Literacy in Organizations.

The COMFORT Model has recently been revised based on feedback from bedside nurses working in palliative care and oncology and includes the following components: Connect, Options, Making Meaning, Family Caregiver, Openings, Relating, and Team. Based on clinical and nonclinical research in hospital, hospice, palliative care, and interdisciplinary education settings, the authors present the updated COMFORT Model. Originally introduced in 2012 to support the work of the nurse, the model is not a linear guide, an algorithm, a protocol, or a rubric for sequential implementation by nurses, but rather a set of communication principles that are practiced concurrently and reflectively during patient/family care. In its restructuring, we focus on the role of health literacy throughout the COMFORT components in relationship to the health literacy attributes of a health care organization. A brief summary of COMFORT components is provided and includes strategies and competencies contributing to a health-literate care organization. Both health literacy and COMFORT are explored using specific communication challenges that underscore the role of the nurse in accomplishing person-centered and culturally responsive care, especially in chronic and terminal illness. The integration of the COMFORT Model into nursing education is proposed.

Challenges in Palliative Care Research on Family Caregivers: Who Volunteers for Interviews?

Background: Interviews are a common method of data collection in palliative care research because they facilitate the gathering of rich, experiential data that are important for theory and practice. What is less clear is the extent to which those interviewed are representative of the larger group. Objective: The aim of this study was to determine if family caregivers who volunteer to be interviewed were similar or different to those who do not. Design: This study used data from the Caregiving and Bereavement study, a prospective, longitudinal mixed-methods study of family caregivers' general health, quality of life, and grief. Setting/Subjects: The 16 caregivers who volunteered to be interviewed were compared to the 20 who did not. Measurements: Comparisons were made in terms of the caregivers' demographic characteristics as well as measures of their quality of life, general health, general grief, and caregiver prolonged grief (i.e., before death). Results: Compared to caregivers who did not volunteer for an interview, those who volunteered were significantly older and reported less caregiver prolonged grief. Logistic regression showed that for each 1-unit increase in the caregiver prolonged grief score, individuals were 13% less likely to agree to an interview. Conclusions: Research findings based upon family caregivers who volunteer for research interviews might not provide a full picture of their experiences and needs. Researchers are encouraged to consider strategies that sample broadly and promote the participation of the full range of family caregivers in research to address the neglected areas of pre- and postdeath bereavement care.

Depression, anxiety, delirium and desire to die in palliative care : Recommendations of the S3 guideline on palliative care for patients with incurable cancer

The aim of palliative care is to optimize the quality of life of patients with incurable advanced diseases. Adequate psychotherapeutic and psychiatric care is essential in this context. This article presents the recommendations of the S3 guideline on palliative care for patients with incurable cancer with regard to psychotherapeutic and psychiatric contents. The guideline was developed under the leadership of the German Society for Palliative Medicine (DGP) within the methodological framework of the German Guideline Program in Oncology. Systematic literature reviews were carried out to identify relevant publications in the databases Medline, Cochrane Library, PsycInfo and Embase. Based on the publications included and clinical experience, representatives of 61professional associations developed and agreed on evidence-based and consensus-based recommendations. Out of the total of 15chapters in the guidelines, four have a special reference to psychiatry or psychotherapy; they cover the topics depression, anxiety, delirium in the dying phase and dealing with the desire to die. These chapters contain atotal of 71recommendations, almost one third of which are evidence-based. In view of the regularly undetected psychological symptoms in patients with incurable cancer, an early assessment is recommended. Optimal control of physical symptoms and support in social and existential matters are general measures that should be provided in addition to non-pharmacological and pharmacological procedures. The guideline on palliative care deals with important mental issues that should be considered by all disciplines and professions. The need for research in palliative care remains high.

Use of Palliative Care Consultation Services for Infants With Life-Threatening Conditions in a Metropolitan Hospital.

Palliative care is becoming an important component for infants with life-limiting or life-threatening conditions and their families. Yet palliative care practices appear to be inconsistent and sporadically used for infants. The purpose of this study was to describe the use of an established pediatric palliative care team for seriously ill infants in a metropolitan hospital. This was a retrospective medical record review. The population included 64 infants who were admitted to a level IV neonatal intensive care unit (NICU) and then died during hospitalization between January 2015 and December 2016. Most infants died in an ICU (n = 63, 95%), and only 20 infants (31%) received palliative care consultation. Most common reasons for consultation were care coordination, defining goals of care and end-of-life planning, and symptom management. Palliative care consultation at this institution did not change the course of end-of-life care. Interventions provided by the ICU team to infants surrounding end of life were similar to those in infants receiving palliative care services from the specialists. Our findings may be useful for developing guidelines regarding how to best utilize palliative care services for infants with life-threatening conditions who are admitted to an ICU. These finding support continued research in neonatal palliative care, more specifically the impact of palliative care guidelines and algorithms.

Clinical research in cancer palliative care: a metaresearch analysis

ObjectiveThis metaresearch of the clinicaltrials.gov database aims to evaluate how clinical research on palliative care is conducted within the setting of advanced cancer.MethodsClinicaltrials.gov was searched to identify registered studies recruiting...

국내외 호스피스완화의료 연구동향 분석: 2014년 1월부터 2019년 3월까지 한국 연구자들이 발표한 연구

국내외 호스피스완화의료 연구동향 분석: 2014년 1월부터 2019년 3월까지 한국 연구자들이 발표한 연구

International palliative care research priorities: A systematic review

BackgroundThere has been increasing evidence and debate on palliative care research priorities and the international research agenda. To date, however, there is a lack of synthesis of this evidence, examining commonalities, differences, and gaps. To identify and synthesize literature on international palliative care research priorities originating from Western countries mapped to a quality assessment framework.MethodsA systematic review of several academic and grey databases were searched from January 2008–June 2019 for studies eliciting research priorities in palliative care in English. Two researchers independently reviewed, critically appraised, and conducted data extraction and synthesis.ResultsThe search yielded 10,235 articles (academic databases, n = 4108; grey literature, n = 6127), of which ten were included for appraisal and review. Priority areas were identified: service models; continuity of care; training and education; inequality; communication; living well and independently; and recognising family/carer needs and the importance of families. Methodological approaches and process of reporting varied. There was little representation of patient and caregiver driven agendas. The priorities were mapped to the Donabedian framework for assessing quality reflecting structure, process and outcomes and key priority areas.ConclusionsLimited evidence exists pertaining to research priorities across palliative care. Whilst a broad range of topics were elicited, approaches and samples varied questioning the credibility of findings. The voice of the care provider dominated, calling for more inclusive means to capture the patient and family voice. The findings of this study may serve as a template to understand the commonalities of research, identify gaps, and extend the palliative care research agenda.

The Practice of Palliative Medicine in Developing Countries—Part Two (FR430)

•Learn how physicians in specific countries provide palliative care to their patient populations often with limited resources.•Recognize specific cultural and political challenges to developing palliative care clinical, educational and research programs.•Describe roles of different health care providers practicing palliative care and how they meet the needs of their local populations. Please join AAHPM's International Scholars for a panel discussion. Each scholar will present for 10-15 minutes on the state of the practice of palliative care in their home country, with an emphasis on the roles of physicians, nurses, and other healthcare providers; the status of education and research in the field; and the unique challenges facing patients and providers. There will be time allotted after each presentation to field questions and dialogue from the audience. Prepare to be educated and inspired by these accomplished individuals who are leading and advancing the field of hospice and palliative medicine in their countries of origin.

The Practice of Palliative Medicine in Developing Countries—Part One (TH330)

•Learn how physicians in specific countries provide palliative care to their patient populations often with limited resources.•Recognize specific cultural and political challenges to developing palliative care clinical, educational, and research programs.•Describe roles of different healthcare providers practicing palliative care and how they meet the needs of their local populations. Please join AAHPM's International Scholars for a panel discussion. Each scholar will present for 10–15 minutes on the state of the practice of palliative care in their home country, with an emphasis on the roles of physicians, nurses, and other healthcare providers; the status of education and research in the field; and the unique challenges facing patients and providers. There will be time allotted after each presentation to field questions and dialogue from the audience. Prepare to be educated and inspired by these accomplished individuals who are leading and advancing the field of hospice and palliative medicine in their countries of origin.

Resident and Facility Factors Associated with Hospital Visits in Residential Care and Assisted Living Settings: Results from the National Survey of Residential Care Facilities (S728)

•Describe the rates of hospital visits and associated resident and facility factors in residential care and assisted living settings.•Explain the need for additional palliative care research and practice in residential care and assisted living settings. In residential care and assisted livings (RC/ALs), hospital visits are distressing for residents, families, and staff. RC/AL residents are at high risk for hospitalization, yet little research investigates factors related to hospitalization in representative samples. This study investigates RC/AL resident and facility factors that relate to general hospital visits for reasons other than stroke, heart attack, or fracture. This study included 8,055 residents (Mage = 79.20, SD = 8.02) from the 2010 National Survey of Residential Care Facilities. Most were white (92%) and female (68%), 24% used Medicaid. The primary outcome was general hospital visits (i.e., overnight stay or emergency department visit). Independent variables included resident demographics, health, change in mental status, social support, and facility characteristics (i.e., size, ownership, specialized care, and surrounding area). In the previous year, 2,777 (35%) residents had a general hospital visit and 457 (6%) were hospitalized on three or more occasions. A logistic regression revealed length of stay less than 6 months; greater ADL assistance; cardiac, pulmonary, and emotional co-morbidities; and living in a small facility (less than 10 total residents) significantly increased risk of general hospital visits at a significance level of .001. Facility size was the strongest predictor in the model (OR = 1.34). Regarding health, 73% of hospitalized residents had cardiac, 19% had pulmonary, 44% had mental health, and 55% had neurological comorbidities. Residents of RC/AL settings evidence high rates of general hospital visits, particularly residents of small facilities and those with cardiac conditions.

Better Together: The Palliative Care Research Cooperative Group as a Model for Increasing Equity in the Science of Hospice and Palliative Care.

Better Together: The Palliative Care Research Cooperative Group as a Model for Increasing Equity in the Science of Hospice and Palliative Care.

Do journals contribute to the international publication of research in their field? A bibliometric analysis of palliative care journal data

Background: Research is important internationally, impacting on health service provision and patient benefit. Journals play an important dissemination role, but there may be geographical bias, potentially affecting access to evidence. Aim: To understand if there is a relationship between the continent of journals and that of contributing authors. Design: Bibliometric analysis of journal citation report data (June 2018). Odds ratio of association of an author being from region, region of journal publication, publication model and the number of papers. Setting: Journals specialising in palliative care research, with an impact factor above the median impact factor for their most common indexing category. Results: Five journals: three published in Europe (Palliative Medicine, BMJ Supportive and Palliative Care, and BMC Palliative Care) and two in North America (Journal of Pain and Symptom Management and Journal of Palliative Medicine). Authors were from 30+ countries, but mostly North America (54.18%) or Europe (27.94%). Preliminary sensitivity tests show that the odds of an author being from a North American institution increase 16.4 times (p < 0.01; 95% confidence interval: 12.9, 20.8) if the region of journal publication is North America. The odds of an author being from a European institution is 14.0 times (p < 0.01; 95% confidence interval: 10.9, 17.9) higher if the region of journal publication is Europe. Conclusion: Publishers, editors and authors are concentrated in North America or Europe. North American authors are more present in North American journals and European authors in European journals. This polarised approach, if replicated across readerships, may lead to research waste, duplication, and be sub-optimal for healthcare development.

Mapping palliative and end of care research in Australia (2000-2018).

The objective of this study is to map the existent research undertaken in Australia into broad thematic areas and identify the characteristics of the studies and areas of future research in the literature. A scoping review methodology was employed to map the current areas of research undertaken in Australia since January 2000 until the end of December 2018 according to years of publications, types of studies, populations studied, research themes, and areas of focus. Our review identified 1,405 Australian palliative care research publications between January 2000 and December 2018. Nearly 40% of the studies were quantitative (39%) and a third were qualitative studies (31%). The remainder of the studies were reviews, mixed methods, quality improvement projects, and others. One-third (30%) of the research was done with carers' participants followed by nurses (22%) and doctors and physicians (18%). The most frequently reported diagnosis in the studies was cancer with 42% of the publication total. The most frequently explored theme was physical symptoms (such as pain, breathlessness, nausea, delirium, and dyspnea) with a total of 16% of all articles followed by communication (15%). There was a large gap to the next most frequently explored theme with service delivery (9%) and coordination of care (8%). Assessment of patients (7%), end-of-life decision-making (6%), and rural/regional (6%) all produced a similar number of publications. Very few studies addressed topics such as quality of life, E-Health, after-hours care, spirituality, and health economics. Moreover, there were only 15 (1%) studies focused on the last days of life. The current review presented a comprehensive search of the literature across almost two decades in Australia in the palliative care setting. It has covered a breadth of research topics and highlighted urgent areas for further research.

Are the MORECare guidelines on reporting of attrition in palliative care research populations appropriate? A systematic review and meta-analysis of randomised controlled trials

BackgroundPalliative care trials have higher rates of attrition. The MORECare guidance recommends applying classifications of attrition to report attrition to help interpret trial results. The guidance separates attrition into three categories: attrition due to death, illness or at random. The aim of our study is to apply the MORECare classifications on reported attrition rates in trials.MethodsA systematic review was conducted and attrition classifications retrospectively applied. Four databases, EMBASE; Medline, CINHAL and PsychINFO, were searched for randomised controlled trials of palliative care populations from 01.01.2010 to 08.10.2016. This systematic review is part of a larger review looking at recruitment to randomised controlled trials in palliative care, from January 1990 to early October 2016. We ran random-effect models with and without moderators and descriptive statistics to calculate rates of missing data.ResultsOne hundred nineteen trials showed a total attrition of 29% (95% CI 28 to 30%). We applied the MORECare classifications of attrition to the 91 papers that contained sufficient information. The main reason for attrition was attrition due to death with a weighted mean of 31.6% (SD 27.4) of attrition cases. Attrition due to illness was cited as the reason for 17.6% (SD 24.5) of participants. In 50.8% (SD 26.5) of cases, the attrition was at random. We did not observe significant differences in missing data between total attrition in non-cancer patients (26%; 95% CI 18–34%) and cancer patients (24%; 95% CI 20–29%). There was significantly more missing data in outpatients (29%; 95% CI 22–36%) than inpatients (16%; 95% CI 10–23%). We noted increased attrition in trials with longer durations.ConclusionReporting the cause of attrition is useful in helping to understand trial results. Prospective reporting using the MORECare classifications should improve our understanding of future trials.

Engaging Fathers in Pediatric Palliative Care Research

Fathers are under-represented in pediatric palliative care research despite frequently playing a key role in the lives of their children. The purpose of this study was to identify factors that affected paternal study invitation and participation. A secondary mixed-methods evaluation design guided examination of interview and focus group data as well as field notes from a qualitative study that examined the experiences and support needs of fathers of children with a life-limiting illness. Facilitators of paternal participation in the study consisted of: fathers’ desire to gain from study participation either for themselves or others, perception of the study’s importance, sense of appreciation for the study’s focus on fathers and an established relationship with recruiting health care providers. Barriers to study participation included: recruiting health care providers’ appraisal of fathers’ lack of well-being, bereaved fathers’ self-reported poor coping and the inability to locate and contact fathers, particularly after a child’s death. Strategies for improving the engagement of fathers into research entailed: educating recruitment personnel, designing “father-focused” studies, communicating the value of the research to recruitment personnel and potential participants, and ensuring that child health records are accurate and include fathers’ contact information.

Impressions of Interfaith Chaplain's Activities among Patients in a Palliative Care Unit: A Semi-Structured Interview-Based Qualitative Study.

Providing spiritual care in light of a patient's religious and/or spiritual background can help improve the quality of end-of-life care. Rinsho-shukyo-shi is a Japanese interfaith chaplain who provides religious and spiritual care to patients. In this study, we qualitatively explore the impressions of patients in a palliative care unit of the activities of an interfaith chaplain in a hospital in Japan. The authors used semi-structured interviews carried out by a male nurse experienced in qualitative and quantitative research in palliative care. The male nurse asked only a few predetermined questions in the interviews, which were conducted from January 19 to December 26, 2018. The interviewees were 15 patients diagnosed with advanced cancer (five men and 10 women; aged 53-81 years), and they were admitted to the palliative care unit of Tohoku University Hospital (the hospital has no religious affiliation). Patients who had spoken to the interfaith chaplain at the hospital at least twice were included in the study. The interviews were digitally audio-recorded, transcribed verbatim, and analyzed. Three main themes were identified through thematic analysis. Resistance varied across patients; no patient felt resistance to the intervention by, or to the presence of, the interfaith chaplain once he/she had spoken with him. Opinions about the interfaith chaplain also varied, with 10 patients claiming that his role was necessary for end-of-life care and beneficial for the chaplain himself. Finally, the patients' religious beliefs varied widely. In conclusion, the interfaith chaplain is deemed helpful by the interviewed patients in relieving their anxieties.

Gender and palliative care: a call to arms.

There has been a systematic and largely unconscious neglect of gender in palliative care research, practice and policy. This is despite significant, although previously uncollated, evidence that gender influences almost all aspects of end-of-life preferences, experiences and care. The social situations of women, transgender people and men often differ from one another while also intersecting in complex ways with sex differences rooted in biology. If palliative care is to meet its aspiration of providing universal benefit, it urgently needs to address a range of gender inequalities currently (re)produced at the level of the laboratory all the way through to government departments. In this call to arms, we spotlight specific instances where gender inequalities have been documented, for example, regarding end-of-life caregiving, end-of-life intervention and palliative care access and benefit. We highlight how gender inequalities intersect with other social determinants of health including ethnicity and economic status to exacerbate situations of marginality. We conclude by offering some practical steps that can be taken to support the discipline to adopt a more critical gender lens to support more equitable research, policy and practice.

The Fami-life study: protocol of a prospective observational multicenter mixed study of psychological consequences of grieving relatives in French palliative care units on behalf of the family research in palliative care (F.R.I.P.C research network)

BackgroundGrieving relatives can suffer from numerous consequences like anxiety, depression, post-traumatic stress disorder (PTSD) symptoms, and prolonged grief. This study aims to assess the psychological consequences of grieving relatives after patients’ death in French palliative care units and their needs for support.MethodsThis is a prospective observational multicenter mixed study. Relatives of adult patients with a neoplasia expected to be hospitalized more than 72 h in a palliative care unit for end-of-life issues will be included within 48 h after patient admission. End-of-life issues are defined by the physician at patient admission. Relatives who are not able to have a phone call at 6-months are excluded. The primary outcome is the incidence of prolonged grief reaction defined by an ICG (Inventory Complicate Grief) > 25 (0 best-76 worst) at 6 months after patient’ death. Prespecified secondary outcomes are the risk factors of prolonged grief, anxiety and depression symptoms between day 3 and day 5 and at 6 months after patients’ death based on an Hospital Anxiety and Depression score (range 0–42) > 8 for each subscale (minimal clinically important difference: 2.5), post-traumatic stress disorder symptoms 6 months after patient’ death based on the Impact of Events Scale questionnaire (0 best-88 worst) score > 22, experience of relatives during palliative care based on the Fami-Life questionnaire, specifically built for the study. Between 6 and 12 months after the patient’s death, a phone interview with relatives with prolonged grief reactions will be planned by a psychologist to understand the complex system of grief. It will be analyzed with the Interpretative Phenomenological Analysis. We planned to enroll 500 patients and their close relatives assuming a 25% prolonged grief rate and a 6-month follow-up available in 60% of relatives.DiscussionThis study will be the first to report the psychological consequences of French relatives after a loss of a loved one in palliative care units. Evaluating relatives’ experiences can provide instrumental insights for means of improving support for relatives and evaluation of bereavement programs.Trial registrationNCT03748225 registered on 11/19/2018. Recruiting patients.

Editorial introductions

Editorial introductions

Qualitative study on perceived dignity of cancer patients undergoing chemotherapy in China.

Safeguarding the perceived dignity of cancer patients has been recently attracting attention, but its development is constrained by the ambiguous construct of dignity. This study aims to describe the perceived dignity of cancer patients undergoing chemotherapy on the basis of the dignity model and to provide insights into the promotion of dignity-conserving care in China. A qualitative descriptive design was conducted with face-to-face, semi-structured, and individual interviews. Consecutive sampling of cancer patients undergoing chemotherapy in a public hospital was conducted. Semi-structured interviews were performed by a registered nurse with experience in palliative care research. Data were analysed using the framework method with inductive and deductive approaches. Twenty patients aged 28-70 years old completed the interviews. Perceived dignity themes were classified into three categories, namely illness-related concerns, dignity-conserving repertoire, and social dignity inventory. In comparison with the dignity model, social dignity inventory had two added themes: communication openness and financial burden. These themes affect the perceived dignity of Chinese patients. The perceived dignity of patients can be affected by various issues, including illness, personal attitudes and practices and social environments. Culture and economics considerably affect the construct of dignity among the Chinese population. Family-oriented approaches are recommended to create an environment where patients feel valued, respected and supported. This method will help cancer patients adapt to the changes brought on by their illness and maintain dignity.