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Nephrology Nursing Journal : Journal of... 2023Palliative care is an effective way to alleviate suffering and improve quality of life in older adults with end stage kidney disease (ESKD). The purpose of this scoping... (Review)
Review
Palliative care is an effective way to alleviate suffering and improve quality of life in older adults with end stage kidney disease (ESKD). The purpose of this scoping review was to identify gaps in available evidence about current and future needs for palliative care in community-residing older adults living in Thailand with advanced chronic kidney disease. Four essential elements (community, education, research, and nursing practice) were found related to older adults with ESKD, their families, and limited graduate palliative care education. Results support the need for graduate nursing education to meet the needs of a growing ESKD population in Thailand and other countries, including the United States.
Topics: Humans; United States; Aged; Palliative Care; Quality of Life; Southeast Asian People; Thailand; Renal Insufficiency, Chronic; Kidney Failure, Chronic
PubMed: 37983552
DOI: No ID Found -
Practical Radiation Oncology 2024
Topics: Humans; Palliative Care; Patient Comfort
PubMed: 38702116
DOI: 10.1016/j.prro.2023.09.010 -
Zeitschrift Fur Gerontologie Und... Jul 2024Shared housing arrangements (SHA) are alternatives to long-term care facilities for care-dependent people. The collective perspective of nursing professionals working in... (Review)
Review
BACKGROUND
Shared housing arrangements (SHA) are alternatives to long-term care facilities for care-dependent people. The collective perspective of nursing professionals working in SHA in dealing with death and dying is missing in recent studies. This study aimed to investigate the perspective of professionals concerning a palliative (farewell) culture in SHA.
METHODS
In this study two group discussions were conducted with nurses and nursing assistants working in SHA. Data were analyzed using the documentary method, with the aim of working out the professional orientation framework concerning a collective palliative culture.
RESULTS
Nurses enable a palliative (farewell) culture. This leads to the fact that hospice services are not used in these SHA. The distance to relatives as well as a short dying process or incomplete dying support can make a successful palliative culture difficult. Depending on the conscious assumption of responsibility for a palliative culture in the nursing concept of SHA, death and dying are discussed at an early stage with the relatives and care-dependent people.
DISCUSSION
The constantly progressing palliative culture in SHA is based on nurses' experiences, general practitioners (GP) and relatives. The family carers' role is ambiguous. If they do what they are supposed to do from the professional nurses' point of view and are closely connected to the nurses, they are viewed positively and as enablers of a palliative culture. If family carers' responsibilities are not communicated and they are not in close contact with professional nurses, they are viewed as opponents of a palliative culture. The GPs are seen as enablers of a palliative culture in both discussions. A timely discussion on what might happen in the end of life phase, formalized or not, helps all involved groups to be prepared.
Topics: Humans; Germany; Female; Male; Palliative Care; Attitude of Health Personnel; Middle Aged; Adult; Organizational Culture; Aged; Attitude to Death; Nursing Homes; Homes for the Aged
PubMed: 38832984
DOI: 10.1007/s00391-024-02313-4 -
Current Problems in Cancer Oct 2023Pediatric palliative care, despite substantial overlap with its adult counterpart, is also distinct in some ways. Serious illness and comorbidities are less common in...
Pediatric palliative care, despite substantial overlap with its adult counterpart, is also distinct in some ways. Serious illness and comorbidities are less common in children, for whom there is a stronger presumption toward aggressive treatment. This, along with impressive cure rates for pediatric cancer, can help explain why children typically survive for a longer period of time following initial palliative care consultation. Though many of the studies demonstrating benefit of integration of palliative care early in the course of the disease for seriously ill patients rather than near or at end-of-life were conducted in adults, similar findings have been documented for children with serious illness. Several barriers to early integration exist, however, including misperceptions that palliative care constitutes "giving up" and concerns about potential role confusion with the primary team. By directly addressing these misperceptions and challenges, it is possible for palliative care and oncology to work in constructive partnerships that will benefit children with cancer and their families.
Topics: Adult; Humans; Child; Palliative Care; Neoplasms; Medical Oncology
PubMed: 37891032
DOI: 10.1016/j.currproblcancer.2023.101023 -
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 -
Palliative & Supportive Care Jun 2024Advancements in medicine and science have enabled more and more people to live longer with a chronic medical condition, namely cancer. Nevertheless, the palliative care...
OBJECTIVES
Advancements in medicine and science have enabled more and more people to live longer with a chronic medical condition, namely cancer. Nevertheless, the palliative care (PC) approach continues to be introduced and incorporated later in the lives of patients and families dealing with such conditions. Thus, the need for individuals to care for this population in our society is increasing, giving rise to the so-called "informal caregivers." The present study intends to examine the main obstacles faced by informal caregivers taking care of a cancer patient receiving PC based on what health professionals working in these settings perceive and write down. To achieve this goal, the written files of 2 Portuguese palliative care institutions were analyzed.
METHODS
An inductive thematic analysis was conducted, focusing on the contact between health professionals and family caregivers and based on the notes taken by health professionals.
RESULTS
Three main overarching themes were identified: (1) burden, (2) intra-family impact of the illness, and (3) network vulnerabilities. Included in this are the emphasis on the role of the family and social support, the high levels of psychological morbidity and caregiver burden present over this period, and a great need for information about the illness.
SIGNIFICANCE OF RESULTS
This study provided a broader awareness regarding the daily struggle experienced by family caregivers, particularly those who juggle between "roles." It is vital to understand the scope of the obstacles experienced by caregivers during the terminal phase of their loved one's illness, given how important it is to address the family's needs. Future studies and practitioners should consider these observations and topics when considering new approaches for this population, as they ought to be quite focused and short in time in order to meet people's needs.
Topics: Humans; Caregivers; Male; Female; Health Personnel; Portugal; Palliative Care; Qualitative Research; Middle Aged; Adult; Aged; Social Support; Neoplasms; Attitude of Health Personnel
PubMed: 38178271
DOI: 10.1017/S1478951523001864 -
Frontiers in Public Health 2023The way in which end-of-life care was provided changed significantly during the first 2 years of the COVID-19 pandemic. The national lockdown restrictions reduced formal...
BACKGROUND
The way in which end-of-life care was provided changed significantly during the first 2 years of the COVID-19 pandemic. The national lockdown restrictions reduced formal care support services and increased the burden on many carers taking on the caring role for the first time. We aimed to explore decision-making about the place of care during the COVID-19 pandemic and the impact on experience from the perspectives of carers and hospice staff caring for people at the end-of-life.
METHODS
A qualitative study using virtual interviews was conducted between October 2020 and April 2021. Data were analyzed thematically using framework analysis, an analytical framework that enables qualitative research to be organized into defined themes derived from the research question. Findings were presented to stakeholders in policy roundtables between March 2022 and March 2023 and discussed collaboratively with staff, stakeholders, and the public to inform policy and practice change.
FINDINGS
A total of 37 participants (15 bereaved carers and 22 staff) were recruited via hospice services in England and Scotland. Four key themes were identified: (1) changing preferences relating to decision-making about the place of care and the impact at the time of death and into bereavement; (2) missed opportunities related to not being there, not having others around, and being robbed of memory-making; (3) the lone carer during a period of high intensity and reduced home support; (4) process vs. person-centered care resulting from changing rules and restrictions and prioritization of regulations over essential palliative care.
CONCLUSION
The study provides valuable global implications for all involved in end-of-life care. Despite great efforts to provide dignified, quality care, palliative care during the pandemic changed, focusing on essential 'physical care'. The psychological suffering experienced by staff and carers may need longer-term support mechanisms put in place, which will benefit from a public health approach. Policymakers should consider improving carer identification and resources for wider end-of-life care education to support the needs of carers, health and social care staff, and citizens.
Topics: Humans; Palliative Care; Caregivers; Hospices; Pandemics; COVID-19; Communicable Disease Control; Qualitative Research
PubMed: 38026434
DOI: 10.3389/fpubh.2023.1139313 -
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 Dec 2023Provision of paediatric palliative care for children with life-threatening or life-limiting conditions and their families is often complex. Guidelines can support... (Review)
Review
BACKGROUND
Provision of paediatric palliative care for children with life-threatening or life-limiting conditions and their families is often complex. Guidelines can support professionals to deliver high quality care. Stakeholders expressed the need to update the first Dutch paediatric palliative care guideline with new scientific literature and new topics. This paper provides an overview of the methodology that is used for the revision of the Dutch paediatric palliative care guideline and a brief presentation of the identified evidence.
METHODS
The revised paediatric palliative care guideline was developed with a multidisciplinary guideline panel of 72 experts in paediatric palliative care and nine (bereaved) parents of children with life-threatening or life-limiting conditions. The guideline covered multiple topics related to (refractory) symptom treatment, advance care planning and shared-decision making, organisation of care, psychosocial care, and loss and bereavement. We established six main working groups that formulated 38 clinical questions for which we identified evidence by updating two existing systematic literature searches. The GRADE (CERQual) methodology was used for appraisal of evidence. Furthermore, we searched for additional literature such as existing guidelines and textbooks to deal with lack of evidence.
RESULTS
The two systematic literature searches yielded a total of 29 RCTs or systematic reviews of RCTs on paediatric palliative care interventions and 22 qualitative studies on barriers and facilitators of advance care planning and shared decision-making. We identified evidence for 14 out of 38 clinical questions. Furthermore, we were able to select additional literature (29 guidelines, two textbooks, and 10 systematic reviews) to deal with lack of evidence.
CONCLUSIONS
The revised Dutch paediatric palliative care guideline addresses many topics. However, there is limited evidence to base recommendations upon. Our methodology will combine the existing evidence in scientific literature, additional literature, expert knowledge, and perspectives of patients and their families to provide recommendations.
Topics: Child; Humans; Advance Care Planning; Decision Making, Shared; Palliative Care; Parents; Practice Guidelines as Topic
PubMed: 38041060
DOI: 10.1186/s12904-023-01293-3 -
Pneumologie (Stuttgart, Germany) May 2024Palliative medicine is an essential part in the treatment of patients with advanced or metastatic NSCLC. A structured palliative approach beginning from diagnoses... (Review)
Review
Palliative medicine is an essential part in the treatment of patients with advanced or metastatic NSCLC. A structured palliative approach beginning from diagnoses improves quality of life and maybe even prolong survival. Besides symptom control, the disease trajectory and prognosis should regularly be re-evaluated and discussed with the patient and his loved ones.
Topics: Palliative Care; Humans; Lung Neoplasms; Carcinoma, Non-Small-Cell Lung; Quality of Life
PubMed: 38081220
DOI: 10.1055/a-2206-5602