Patient card games in palliative care: integrative review

2021 ◽  
pp. bmjspcare-2021-003300
Author(s):  
Carla Silvia Fernandes ◽  
Marisa Lourenço ◽  
Belem Vale
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Assessment Tools ◽  
Integrative Review ◽  
Inclusion Criteria ◽  
Sensitive Topics ◽  
Card Games ◽  
Degree Of Satisfaction ◽  
Methodological Aspects ◽  
High Degree

BackgroundIn the context of palliative care, a new approach has been documented that allows for sensitive end-of-life conversations to be established through a game of cards.ObjectiveThis study aimed to identify the use of card games with patients in palliative care, assess self-reported satisfaction and synthesise findings on the effectiveness of its application.DesignWe performed an integrative review study. The studies were collected from five databases, with no time limit until February 2021: Medical Literature Analysis and Retrieval System Online, Cumulative Index to Nursing and Allied Health Literature, Psychology and Behavioral Sciences Collection, SCOPUS and Scientific Electronic Library Online. The inclusion criteria were studies describing the use of card games in adult patients undergoing palliative care, in which the authors performed some type of evaluation. The methodological evaluation of the studies was carried out using the different standardised assessment tools from the Joanna Brigg’s Institute.ResultsOf the 685 articles identified, 9 met the inclusion criteria. Regarding methodological aspects, 4 studies were quantitative, 4 mixed-method methodologies, and 1 was qualitative. Card games have been in use for the last decade. The use of card games not only allows for participation in the game without any inhibitions and with a high degree of satisfaction, but also allows for the discussion of sensitive topics related to the end of life, motivating participants to engage in advanced care planning behaviours.ConclusionOur findings suggest that using a card game to facilitate conversations with patients in palliative care is a useful and effective approach to discussing uncomfortable topics of death, dying and end-of-life care.

Rural community-based nurses’ self-reported knowledge and skills in the provision of psychosocial care to palliative and end-of-life clients and carers

2021 ◽  
pp. 1-9
Author(s):  
Eli Ristevski ◽  
Michael Leach ◽  
Ellen Bolton ◽  
Melissa Spargo ◽  
Anny Byrne ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Rural Community ◽  
Psychosocial Care ◽  
Assessment Tools ◽  
Formal Training ◽  
Educational Strategies ◽  
Community Based ◽  
Knowledge And Skills ◽  
Practice Gaps

Abstract Objective This study examined rural community-based nurses' self-reported knowledge and skills in the provision of psychosocial care to rural residing palliative and end-of-life clients and carers. We further sought to determine correlates of knowledge gaps to inform workforce education and planning. Method Nurses from a rural area of Victoria, Australia, were invited to complete an electronic questionnaire rating their knowledge against 6 national palliative care standards and 10 screening and assessment tools. A 5-point scale of (1) No experience to (5) Can teach others was used to rate knowledge. Results were classified into three categories: practice gaps, areas of consolidation, and strengths. Descriptive and logistical regression was used to analyze data. Results A total of 122 of 165 nurses (response rate = 74%) completed the survey. Of these nurses, 87% were Registered Nurses, 43% had ≥10 years' experience in palliative care, and 40% had palliative care training. The majority of practices across the standards and screening and assessment tools were rated as knowledge strengths (N = 55/67, 82%). Gaps and areas of consolidation were in the use of client and carer assessment tools, the care of specific populations such as children, supporting carers with appropriate referrals, resources, and grief, and facilitating the processes of reporting a death to the coroner. Lack of formal training and lower years of experience were found to be associated with practice gaps. Significance of results Our study found rural nurses were confident in their knowledge and skills in the majority of psychosocial care. As generalist nurses make up the majority of the rural nursing workforce, further research should be undertaken on what educational strategies are needed to support and upskill rural community-based nurses to undertake formal training in palliative care.

scholarly journals Barriers and facilitators to optimal supportive end-of-life palliative care in long-term care facilities: a qualitative descriptive study of community-based and specialist palliative care physicians’ experiences, perceptions and perspectives

BMJ Open ◽  
2020 ◽  
Vol 10 (8) ◽  
pp. e037466
Author(s):  
Patricia Harasym ◽  
Sarah Brisbin ◽  
Misha Afzaal ◽  
Aynharan Sinnarajah ◽  
Lorraine Venturato ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Long Term Care ◽  
Symptom Assessment ◽  
Assessment Tools ◽  
Life Care ◽  
Community Based ◽  
Term Care

ObjectiveThe COVID-19 pandemic has highlighted ongoing challenges to optimal supportive end-of-life care for adults living in long-term care (LTC) facilities. A supportive end-of-life care approach emphasises family involvement, optimal symptom control, multidisciplinary team collaboration and death and bereavement support services for residents and families. Community-based and palliative care specialist physicians who visit residents in LTC facilities play an important role in supportive end-of-life care. Yet, perspectives, experiences and perceptions of these physicians remain unknown. The objective of this study was to explore barriers and facilitators to optimal supportive end-of-life palliative care in LTC through the experiences and perceptions of community-based and palliative specialist physicians who visit LTC facilities.DesignQualitative study using semi-structured interviews, basic qualitative description and directed content analysis using the COM-B (capability, opportunity, motivation - behaviour) theoretical framework.SettingResidential long-term care.Participants23 physicians who visit LTC facilities from across Alberta, Canada, including both in urban and rural settings of whom 18 were community-based physicians and 5 were specialist palliative care physicians.ResultsMotivation barriers include families’ lack of frailty knowledge, unrealistic expectations and emotional reactions to grief and uncertainty. Capability barriers include lack of symptom assessment tools, as well as palliative care knowledge, training and mentorship. Physical and social design barriers include lack of dedicated spaces for death and bereavement, inadequate staff, and mental health and spiritual services of insufficient scope for the population.ConclusionFindings reveal that validating families’ concerns, having appropriate symptom assessment tools, providing mentorship in palliative care and adapting the physical and social environment to support dying and grieving with dignity facilitates supportive, end-of-life care within LTC.

Observational Pain Assessment Instruments for Use With Nonverbal Patients at the End-of-life: A Systematic Review

2019 ◽  
Vol 34 (4) ◽  
pp. 255-266 ◽  
Author(s):  
Diane Tapp ◽  
Sara Chenacher ◽  
Ngangue Patrice Alain Gérard ◽  
Philippe Bérubé-Mercier ◽  
Celine Gelinas ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Pain Assessment ◽  
Reliability And Validity ◽  
Assessment Tools ◽  
Cochrane Library ◽  
Severe Illness ◽  
Assessment Instruments ◽  
Measurement Instruments ◽  
Health Measurement

Purpose: To review studies pertaining to the reliability and validity of observational pain assessment tools for use with nonverbal patients at the end-of-life, a field of research not documented by previous systematic reviews. Methods: Databases (PubMed, Embase, Epistemonikos, the Cochrane Library, and CINAHL) were systematically searched for studies from study inception to February 21, 2016 (update in May 9, 2018). Two independent reviewers screened study titles, abstracts, and full texts according to inclusion and exclusion criteria. Disagreements were resolved through consensus. Reviewers also extracted the psychometrics properties of studies of observational pain assessment instruments dedicated to a noncommunicative population in palliative care or at the end-of-life. A comprehensive quality assessment was conducted using the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) to derive poor, fair, good or excellent ratings for the psychometric tests reported in each study. Results: Four studies linked to 4 different tools met the inclusion criteria. Study populations included dementia, palliative care and severe illness in the context of intensive care. All the studies included in this review obtained poor COSMIN ratings overall. Conclusions: At this point, it is impossible to recommend any of the tools evaluated given the low number and quality of the studies. Other analyses and studies need to be conducted to develop, adapt, or further validate observational pain instruments for the end-of-life population, regardless of the disease.

Building a Transdisciplinary Approach to Palliative Care in an Acute Care Setting

2013 ◽  
Vol 67 (1-2) ◽  
pp. 43-51 ◽  
Author(s):  
Donnelle Daly ◽  
Stephen Chavez Matzel
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Acute Care ◽  
Care Setting ◽  
Care Service ◽  
Palliative Care Service ◽  
Assessment Tools ◽  
Community Resources ◽  
Acute Care Setting ◽  
Transdisciplinary Approach

A transdisciplinary team is an essential component of palliative and end-of-life care. This article will demonstrate how to develop a transdisciplinary approach to palliative care, incorporating nursing, social work, spiritual care, and pharmacy in an acute care setting. Objectives included: identifying transdisciplinary roles contributing to care in the acute care setting; defining the palliative care model and mission; identifying patient/ family and institutional needs; and developing palliative care tools. Methods included a needs assessment and the development of assessment tools, an education program, community resources, and a patient satisfaction survey. After 1 year of implementation, the transdisciplinary palliative care team consisted of seven palliative care physicians, two social workers, two chaplains, a pharmacist, and End-of-Life Nursing Consortium (ELNEC) trained nurses. Palomar Health now has a palliative care service with a consistent process for transdisciplinary communication and intervention for adult critical care patients with advanced, chronic illness.

scholarly journals Exploring an integrated palliative care model for older people: an integrative review

2019 ◽  
Vol 27 (2) ◽  
pp. 111-122 ◽  
Author(s):  
Marina Raco ◽  
Teresa Burdett ◽  
Vanessa Heaslip
Keyword(s):  
Palliative Care ◽  
Global Health ◽  
Older People ◽  
End Of Life ◽  
Integrated Care ◽  
End Of Life Care ◽  
Integrative Review ◽  
Ageing Population ◽  
Life Care ◽  
Content Type

Purpose Due to an international ageing population, global health organisations have recognised the challenges arising from fragmented interaction between health and social sectors in the end of life care. The purpose of this paper is to explore the existing literature on integrative palliative care services for older people. Design/methodology/approach An integrative review was conducted using the Preferred Reporting Items for Systematic reviews and Meta-Analyses. Papers included in the review focused upon integrated care within palliative care systems (January 2007–2017). A certain number of papers were excluded when the review focused on individuals younger than 65, not written in English and not being focused on integrated palliative care. Findings Nine studies fitted the inclusion criteria and three themes were identified: person-centred care, co-ordination of care, and education and training. The review identifies that integrated palliative care requires co-ordinated techniques that focus upon the quality of life, individual needs and awareness of vulnerability rather than fixation on inevitable mortality. Research limitations/implications The emerging presence of the need for integrated palliative care requires further research in order to develop coherent models of integrated palliative care which can be incorporated into practice. Originality/value This review identified themes relevant to the emerging issues in the global health sector of end of life care. The literature suggests that the optimised use of an integrated care approach to a palliative model of care is required and in need of further investigation.

The Life Experiences Among Primary Family Caregivers of Home-Based Palliative Care

2020 ◽  
Vol 37 (10) ◽  
pp. 816-822 ◽  
Author(s):  
Meng-Ping Wu ◽  
Sheng-Jean Huang ◽  
Lee-Ing Tsao
Keyword(s):  
Palliative Care ◽  
Home Care ◽  
End Of Life ◽  
Family Caregivers ◽  
Family Members ◽  
Assessment Tools ◽  
Theory Approach ◽  
Home Based ◽  
Number Of Patients ◽  
Primary Family

Background: An increasing number of patients with terminal illnesses prefer to die in their own homes due to aging, high medical payments, a limited number of hospitalization days, and the ability to receive care from family members. However, few studies have been conducted on the subjective perception and value of caregivers for home-based palliative care (HBPC). Objective: To identify common themes and topics of primary family caregivers’ lived experiences with HBPC when taking care of terminally ill family members. Methods: We conducted audio-recorded transcripts of one-on-one in-depth interviews of primary family caregivers of HBPC. Through a purposive sampling method, the participants were all interviewed; these interviews were transcribed verbatim and analyzed using a grounded theory approach. Results: A total of 22 primary family caregivers participated in the study. “Wholeheartedly accompanying one’s family to the end of life at home” was the core category. Six main themes describing caregivers’ experiences emerged from the interviews: (1) learning the basic skills of end-of-life home care, (2) arranging the sharing and rotation of care, (3) preparing for upcoming deaths and funerals, (4) negotiating the cultural and ethical issues of end-of-life home care, (5) ensuring a comfortable life with basic life support, and (6) maintaining care characterized by concern, perseverance, and patience. Conclusions: Primary family caregivers of HBPC need support and must learn home care skills by means of the holistic approach. It is crucial to establish assessment tools for caregivers’ preparedness for HBPC, including biopsychosocial and cultural considerations.

Assessing the Unique Experiences and Needs of Muslim Oncology Patients Receiving Palliative and End-of-Life Care: An Integrative Review

2018 ◽  
Vol 34 (1) ◽  
pp. 52-61 ◽  
Author(s):  
Carolina Gustafson ◽  
Mark Lazenby
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Care Delivery ◽  
Data Extraction ◽  
Integrative Review ◽  
Life Care ◽  
Oncology Patients ◽  
Care Models ◽  
Patient Care Delivery

The objective of this review was to detail the experiences of Muslim oncology patients receiving palliative and end-of-life care and identify where gaps in the providing of culturally aware care occur. We also sought to examine ways in which providers could be better educated on the needs of Muslim patients at the end-of-life and identify barriers Muslims faced when being treated with hospice and palliative care models developed for non-Muslim populations. We conducted a search in April 2018 in the National Library of Medicine and CINAHL databases using the search terms “palliative care,” “Muslim,” and “cancer.” Included were articles with focuses on adult Muslims with palliative and end-of-life care experiences. We then followed the PRISMA guidelines for an integrative review and used a data extraction matrix to identify 20 papers that met the inclusion criteria of the review. We identified four major themes patient experiences, patient care delivery suggestions, Muslim provider experiences, and definitions of death, present in all 20 papers of the review. Each of the included papers was categorized based on the dominant theme in the paper. This review ultimately found that the care provided to Muslim patients is subpar for the standard of culturally competent care and that the needs of Muslim patients at the end-of-life, as well as the needs of their families, are not being met. Moving forward further research on this topic is needed with a particular focus on examining the experiences of terminally ill Muslim patients receiving treatment in non-Muslim majority settings.

End-of-life palliative care resource utilization in cancer care: A focus on the urban-rural continuum.

2019 ◽  
Vol 37 (31_suppl) ◽  
pp. 52-52
Author(s):  
Jessica Cerni ◽  
Joel Rhee ◽  
Hassan Hosseinzadeh
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Cancer Care ◽  
Service Use ◽  
Inclusion Criteria ◽  
Care Services ◽  
Quantitative Studies ◽  
Palliative Care Services ◽  
Urban Rural ◽  
Ed Visits

52 Background: Despite the advances in end-of-life cancer care, disparities exist in the availability, accessibility and use of palliative care services across the urban-rural continuum. This review explores this disparity by synthesising retrospective quantitative studies on palliative care patterns of resource use for adults during end-of-life cancer care. Methods: Five databases were searched and data analysed using Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Inclusion criteria involved; a) original research; b) quantitative studies; c) English-language; d) study assessed palliative care related service use in adult (18yrs+) cancer patients with any malignancy excluding non-melanoma skin cancer; e) exclusive end of life focus and f) urban-rural focus. Narrative reviews and discussions were excluded. Results: After reviewing all titles and abstracts ( N= 816) and full text review ( N= 163) 44 studies met the inclusion criteria and were included in the analysis. End-of-life palliative care access and utilisation patterns varied across the geographical urban-rural continuum. Geographical region of residence had the strongest association with multiple ED visits and hospitalizations in rural or remote areas. Most common palliative care services used within the last 30 days of death were ED visits and hospital admissions. Two studies assessed palliative radiotherapy and one study assessed palliative care pharmacotherapy. The odds of palliative service use were lowest for males and individuals with a survival diagnosis (0-3months). The largest inequities were explained by individual level factors including gender as assessed in ( N= 44 studies), socioeconomic status ( N= 15), proximity to service ( N= 10) and survival time from cancer diagnosis ( N= 9). Conclusions: Rurality was an important predictor for poorer outcomes in the quality of end-of-life cancer care. Findings suggest that addressing the urban-rural continuum is critical for equitable, timely and efficient palliative cancer care. Further research is required to understand barriers to service usage to achieve optimal palliative care.

scholarly journals How to measure the effects and potential adverse events of palliative sedation? An integrative review

2020 ◽  
pp. 026921632097426
Author(s):  
Alazne Belar ◽  
María Arantzamendi ◽  
Sheila Payne ◽  
Nancy Preston ◽  
Maaike Lee-Rijpstra ◽  
...  
Keyword(s):  
Palliative Care ◽  
Adverse Events ◽  
Palliative Sedation ◽  
Integrative Review ◽  
Patient Comfort ◽  
Cochrane Library ◽  
Inclusion Criteria ◽  
Sedation Scale ◽  
Ramsay Sedation Scale ◽  
Care Assessment

Background: Palliative sedation is the monitored use of medications intended to relieve refractory suffering. The assessment of palliative sedation has been focused on the assess of the level of consciousness but a more comprehensive approach to assessment is needed. Aim: To understand how the potential effects and possible adverse events of palliative sedation in Palliative Care patients are measured. Design: Integrative review of most recent empirical research. Data sources: Cochrane Library, Embase, Medline, PubMed, and CINAHL were searched (2010–2020) using the terms sedation, palliative care, terminal care, assessment. Limits included studies in English and adults. Inclusion criteria were: scientific assessment papers, effects and complications of palliative sedation; patients with incurable illness. Results: Out of 588 titles, 26 fulfilled inclusion criteria. The Discomfort Scale-Dementia of Alzheimer Type and Patient Comfort Score were used to assess comfort. The Richmond Agitation-Sedation Scale and The Ramsay Sedation Scale are the most used to measure its effect. Refractory symptoms were assessed through multi-symptom or specific scales; except for psychological or existential distress. Delirium was assessed using the Memorial Delirium Assessment Scale and pain through the Critical Care Pain Observation Tool. The use of technical approaches to monitor effects is upcoming. There is lack of measurement of possible adverse events and variability in timing measurement. Conclusions: There are palliative care validated instruments to assess the sedation effect but this review shows the need for a more standardized approach when assessing it. Instruments should be used within an experienced and trained expert, providing a holistic assessment.

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