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Journal of Pain and Symptom Management Apr 2024The provision of person-centered dignity-conserving care is central to palliative care. It is important to reevaluate current methods of assessing dignity as the concept... (Review)
Review
CONTEXT
The provision of person-centered dignity-conserving care is central to palliative care. It is important to reevaluate current methods of assessing dignity as the concept of dignity is multifaceted.
OBJECTIVES
The aim of this study is to understand the tools which are used to assess a patient's dignity and the elements of dignity evaluated in these tools.
METHODS
Two independent and concurrent Systematic Evidence-Based Approach guided systematic scoping reviews (SSR in SEBA) on existing dignity assessment tools and on accounts of assessments of dignity were carried out. The SSR in SEBA on dignity assessment tools involving PubMed, Embase, PsycINFO, Cochrane Database of Systematic Reviews, Scopus, and CINAHL databases saw 22 full-text articles included from the 645 articles reviewed. The SSR in SEBA on accounts of assessments of dignity featured in the PubMed database identified 102 full-text articles which saw 46 articles included.
RESULTS
The domains identified were factors affecting patients' definition of dignity; elements of dignity-conserving care; and components of effective tools.
CONCLUSION
Current accounts to assess dignity and assessment tools fail to capture shifting self-concepts of dignity holistically. A portfolio-like appraisal of dignity is proposed to achieve assessments that are timely, longitudinal, and patient-specific. Portfolio-based assessments by members of the multidisciplinary team will better direct timely evaluations of relevant aspects of changing concepts of dignity, without losing the patient's holistic perception of dignity.
Topics: Humans; Palliative Care; Personhood; Respect; Systematic Reviews as Topic; Terminal Care
PubMed: 38092260
DOI: 10.1016/j.jpainsymman.2023.12.008 -
Seminars in Hematology Sep 2023Patients with hematologic malignancies often experience fatigue, lack of vitality, and energy, and high psychological distress. High levels of unmet care needs of... (Review)
Review
Patients with hematologic malignancies often experience fatigue, lack of vitality, and energy, and high psychological distress. High levels of unmet care needs of patients with hematologic malignancies in Asia were identified. This review provides an overview of current evidence on the experiences and palliative care needs of patients with hematologic malignancies and their families and the barriers and challenges of integrating palliative care into hematology care in Asia. Patients with hematologic malignancies who received palliative care could benefit from less aggressive end-of-life treatments. However, the uncertain and variable nature of the prognosis and illness trajectories of hematologic malignancies increase the difficulties of integrating palliative care into hematologic care. Patients and their families are often referred to palliative care services late, which leaves a short window for palliative care teams to provide holistic needs assessment and person-centered care for those who need it. In addition, cultural differences in medical decision-making patterns and complex social norms and interactions among patients, families, and healthcare staff make it even more challenging to initiate palliative care conversations in Asia. Future research should focus on the development and evaluation of culturally appropriate palliative care for patients with hematologic malignancies and their family caregivers in Asia, given that the low rate of service intake and poor public awareness of the important role of palliative care in disease trajectories were reported. The socio-cultural context surrounding individuals should be taken into consideration to ensure the provision of person-centered care for this group of patients. Digital health could be one of the possible solutions forward to address local needs and challenges.
Topics: Humans; Palliative Care; Caregivers; Hematologic Neoplasms; Prognosis; Asia
PubMed: 37517948
DOI: 10.1053/j.seminhematol.2023.07.002 -
BMC Palliative Care Jul 2023Palliative care involves an approach aimed at improving the quality of life of patients and their families, who are forced to cope with the problems associated with...
Palliative care involves an approach aimed at improving the quality of life of patients and their families, who are forced to cope with the problems associated with life-threatening diseases. This definition includes a growing group of patients around the world. It requires an extension of the definition of patients in need of palliative care in countries such as Russia and a significant improvement in the work of nursing personnel with these patients. This study aims to determine the level of preparedness of nursing personnel for specialized care (transcultural care) and the quality of care provided to palliative patients. The presented findings of the study demonstrate the relevance of developing transcultural competence, which enables significant improvement in the quality of life of palliative patients. The analysis of medical workers' assessment of the level of specific training and their intercultural preparedness was conducted based on hospices (Moscow). A survey was conducted among 113 medical workers of the middle level of education aged between 28 and 56 (average of 44.2 years) and experience in palliative care ranged from 3 to 18 years (average of 9.5 years). The Intercultural Readiness Check (IRC) test, widely used to assess nursing staff worldwide, was used for the survey to determine the level of readiness for transcultural care. A strong correlation was found between a number of the test scales and measures of participants' age and experience. The presented material demonstrates the realization of an interdisciplinary approach to the issues of specific training of nursing personnel in the field of "transcultural care" in providing palliative care to incurable patients.
Topics: Humans; Child, Preschool; Child; Adolescent; Quality of Life; Palliative Care; Hospices; Russia; Nurses
PubMed: 37407991
DOI: 10.1186/s12904-023-01198-1 -
Soins; La Revue de Reference Infirmiere Sep 2023Until now, the early approach of palliative care patients for corneal harvesting has been unheard of in France. At the Centre Hospitalier Intercommunal de...
Until now, the early approach of palliative care patients for corneal harvesting has been unheard of in France. At the Centre Hospitalier Intercommunal de Villeneuve-Saint-Georges Lucie-et-Raymond-Aubrac, in the Val-de-Marne region of France, we offer a rigorous and respectful procedure and organization for patients who have been carefully selected for an early approach to donation.
Topics: Humans; Palliative Care; France
PubMed: 37657872
DOI: 10.1016/j.soin.2023.07.012 -
BMC Palliative Care Jul 2023Within Germany, there is a heterogeneous range of training and continuing education in palliative care for different professional groups. The German Society for...
BACKGROUND
Within Germany, there is a heterogeneous range of training and continuing education in palliative care for different professional groups. The German Society for Palliative Medicine (DGP), together with the German Hospice and Palliative Care Association (DHPV), have defined quality requirements for postgraduate training in palliative care. These requirements include the evaluation of course structures and the assessment of outcomes.
AIM
To assess the 'learning gains' in palliative care nurses and physicians undertaking continuing education programmes, and evaluate the structures and processes. To identify if/how the continuing education programmes could be improved.
MATERIAL AND METHODS
The development of Nurses' and Physicians' learning was determined using a retrospective self-assessment procedure. The evaluation was based on learning objectives developed in the DGP Education Working Group, using a six-point Likert scale for each item, and space for 'free-text' comments. Assessments were conducted after training.
RESULTS
Five hundred twenty nine self-assessments were recorded (456 nurses / 73 physicians). An increase in learning is demonstrated in all areas (knowledge, skills, social and self-competence) for each profession. The greatest gain was in symptom control. However, there were significant differences in the extent of learning gains between nurses and physicians.
CONCLUSION
Analysis suggests current training results in improvements, but personal competences progress less than knowledge and skills. One way to improve this would be to introduce more interprofessional continuing education elements. Evaluation, as a basis for improving training concepts, is essential for continual development.
Topics: Humans; Palliative Care; Retrospective Studies; Physicians; Hospice Care; Nurses
PubMed: 37443089
DOI: 10.1186/s12904-023-01217-1 -
BMC Palliative Care Sep 2023CAPACITI is a virtual education program that teaches primary care teams how to provide an early palliative approach to care. After piloting its implementation, we...
BACKGROUND
CAPACITI is a virtual education program that teaches primary care teams how to provide an early palliative approach to care. After piloting its implementation, we conducted an in-depth qualitative study with CAPACITI participants to assess the effectiveness of the components and to understand the challenges and enablers to virtual palliative care education.
METHODS
We applied a qualitative case study approach to assess and synthesize three sources of data collected from the teams that participated in CAPACITI: reflection survey data, open text survey data, and focus group transcriptions. We completed a thematic analysis of these responses to gain an understanding of participant experiences with the intervention and its application in practice.
RESULTS
The CAPACITI program was completed by 22 primary care teams consisting of 159 participants across Ontario, Canada. Qualitative data was obtained from all teams, including 15 teams that participated in focus groups and 21 teams that provided reflection survey data on CAPACITI content and how it translated into practice. Three major themes arose from cross-analysis of the data: changes in practice derived from involvement in CAPACITI, utility of specific elements of the program, and barriers and challenges to enacting CAPACITI in practice. Importantly, participants reported that the multifaceted approach of CAPACITI was helpful to them building their confidence and competence in applying a palliative approach to care.
CONCLUSIONS
Primary care teams perceived the CAPACITI facilitated program as effective towards incorporating palliative care into their practices. CAPACITI warrants further study on a national scale using a randomized trial methodology. Future iterations of CAPACITI need to help mitigate barriers identified by respondents, including team fragmentation and system-based challenges to encourage interprofessional collaboration and knowledge translation.
Topics: Humans; Palliative Care; Pilot Projects; Qualitative Research; Ontario; Primary Health Care
PubMed: 37759200
DOI: 10.1186/s12904-023-01265-7 -
BMJ Supportive & Palliative Care Dec 2023Decision-making in palliative care usually involves both patients and family caregivers. However, how concordance and discordance in decision-making manifest and...
BACKGROUND
Decision-making in palliative care usually involves both patients and family caregivers. However, how concordance and discordance in decision-making manifest and function between patients and family caregivers in palliative care is not well understood.
OBJECTIVES
To identify key factors and/or processes which underpin concordance and/or discordance between patients and family caregivers with respect to their preferences for and decisions about palliative care; and ascertain how patients and family caregivers manage discordance in decision-making in palliative care.
METHODS
A systematic review and narrative synthesis of original studies published in full between January 2000 and June 2021 was conducted using the following databases: Embase; Medline; CINAHL; AMED; Web of Science; PsycINFO; PsycARTICLES; and Social Sciences Full Text.
RESULTS
After full-text review, 39 studies were included in the synthesis. Studies focused primarily on end-of-life care and on patient and family caregiver preferences for patient care. We found that discordance between patients and family caregivers in palliative care can manifest in relational conflict and can result from a lack of awareness of and communication about each other's preferences for care. Patients' advancing illness and impending death together with open dialogue about future care including advance care planning can foster consensus between patients and family caregivers.
CONCLUSIONS
Patients and family caregivers in palliative care can accommodate each other's preferences for care. Further research is needed to fully understand how patients and family caregivers move towards consensus in the context of advancing illness.
Topics: Humans; Palliative Care; Caregivers; Decision Making; Terminal Care; Hospice Care
PubMed: 35318213
DOI: 10.1136/bmjspcare-2022-003525 -
BMC Palliative Care Oct 2023The palliative care period not only affects patients but also family caregivers in many ways. Palliative care units are places where the spiritual needs of family...
BACKGROUND
The palliative care period not only affects patients but also family caregivers in many ways. Palliative care units are places where the spiritual needs of family caregivers become important. According to a holistic care approach, palliative care nurses should determine the spiritual needs of family caregivers and help meet these needs.
OBJECTIVE
This study aims at exploring nurses' and family caregivers' experiences of spiritual care.
METHODS
A phenomenological study was designed in this qualitative research. A total of 10 nurses working in palliative care and 11 family caregivers participated in the study. Nurses' experiences of delivering spiritual care and family caregivers' experiences of receiving spiritual care were examined through the in-depth interviewing method on a one-to-one basis. The data were examined using thematic analysis.
RESULTS
Four main themes were obtained by the data analysis: (I) Impacts of being in a palliative care unit; (II) Coping methods; (III) Importance of spirituality and spiritual care; (IV) Spiritual care. The results were presented according to the COREQ criteria.
CONCLUSION
Although spiritual care is very necessary for family caregivers, it is not offered sufficiently due to nurse-and institution-related reasons. Palliative care nurses should determine the spiritual needs of family caregivers in line with the holistic care approach. Nurse managers should determine factors preventing nurses from offering spiritual care and create solutions for these factors. The lack of nurses' knowledge about spiritual care should be resolved by providing continuous training and therefore, nurses' competencies in spiritual care should be improved.
Topics: Humans; Spirituality; Palliative Care; Caregivers; Clinical Competence; Spiritual Therapies; Qualitative Research
PubMed: 37884938
DOI: 10.1186/s12904-023-01286-2 -
Journal of Pain and Symptom Management Feb 2024Advance care planning (ACP) improves care for patients with chronic illnesses and reduces family stress. However, the impact of ACP interventions on healthcare... (Review)
Review
CONTEXT
Advance care planning (ACP) improves care for patients with chronic illnesses and reduces family stress. However, the impact of ACP interventions on healthcare professionals' well-being remains unknown.
OBJECTIVE
To systematically review the literature evaluating the impact of ACP interventions on healthcare professionals' well-being.
METHODS
We followed the Joanna Briggs Institute methodology for systematic reviews and registered the protocol in PROSPERO (CRD42022346354). We included primary studies in all languages that assessed the well-being of healthcare professionals in ACP interventions. We excluded any studies on ACP in psychiatric care and in palliative care that did not address goals of care. Searches were conducted on April 4, 2022, and March 6, 2023 in Embase, CINAHL, Web of Science, and PubMed. We used the Mixed Methods Appraisal Tool for quality analysis. We present results as a narrative synthesis because of their heterogeneity.
RESULTS
We included 21 articles published in English between 1997 and 2021 with 17 published after 2019. All were conducted in high-income countries, and they involved a total of 1278 participants. Three reported an interprofessional intervention and two included patient partners. Studies had significant methodological flaws but most reported that ACP had a possible positive impact on healthcare professionals' well-being.
CONCLUSION
This review is the first to explore the impact of ACP interventions on healthcare professionals' well-being. ACP interventions appear to have a positive impact, but high-quality studies are scarce. Further research is needed, particularly using more rigorous and systematic methods to implement interventions and report results.
Topics: Humans; Advance Care Planning; Delivery of Health Care; Health Personnel; Palliative Care
PubMed: 37827454
DOI: 10.1016/j.jpainsymman.2023.09.026 -
BMC Palliative Care Oct 2023Specialist palliative care (SPC) includes care for incurably ill patients and their family caregivers at home or on a palliative care ward until the very end of life....
BACKGROUND
Specialist palliative care (SPC) includes care for incurably ill patients and their family caregivers at home or on a palliative care ward until the very end of life. However, in the last days of life, patients can rarely express their needs and little is known about SPC outcomes as reported by multiprofessional SPC teams and family caregivers.
METHODS
Using the Palliative Care Outcome Scale (POS; Score 0-40), proxy assessments of SPC outcomes in the patient's last 3 days of life were performed by SPC teams and primary family caregivers of three home care and three inpatient services. Additional questions were asked about problems solved 'particularly well' or 'inadequately' (last 7 days), which were content analyzed and quantified.
RESULTS
Proxy assessments by SPC teams were available in 142 patients (of whom 51% had died at home). Family caregiver assessments exist for a subgroup of 60 of these patients. SPC teams (POS total score: mean 13.8, SD 6.3) reported SPC outcomes slightly better than family caregivers (mean 16.7, SD 6.8). The POS items consistently rated as least affected (= 0) by both, SPC teams and family caregivers, were 'not wasted time' (team 99%/family caregivers 87%), 'information' (84%/47%) and 'support' (53%/31%). Items rated as most affected (= 4) were 'patient anxiety' (31%/51%), 'life not worthwhile' (26%/35%) and 'no self-worth' (19%/30%). Both groups indicated more problems solved 'particularly well' than 'inadequately'; the latter concerned mainly clinically well-known challenges during end-of-life care and family caregiver care.
CONCLUSIONS
This study shows the range and type of symptoms and other concerns reported in the patient's last days. Starting points for further improvements in family caregiver care and psychosocial and spiritual issues were identified.
Topics: Humans; Caregivers; Palliative Care; Quality of Life; Home Care Services; Death
PubMed: 37814271
DOI: 10.1186/s12904-023-01266-6