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Alternative Therapies in Health and... Nov 2023This study investigated the attitudes of the community surrounding palliative care practitioners towards palliative care and the factors influencing these attitudes. It...
OBJECTIVE
This study investigated the attitudes of the community surrounding palliative care practitioners towards palliative care and the factors influencing these attitudes. It provides valuable insights for the advancement of palliative care.
METHODS
We conducted a survey using anonymous online questionnaires distributed through various social media platforms. Members of the surrounding community were invited to participate voluntarily. We analyzed their attitudes towards palliative care and the relevant influencing factors.
RESULTS
Most participants expressed strong support for palliative care. Significant factors affecting their attitudes included awareness of palliative care, decision-making rights regarding treatment, and age (P < .05).
CONCLUSIONS
The attitudes of the surrounding community towards palliative care practitioners were predominantly positive. To further enhance the development of palliative care, focusing on public awareness and education efforts is essential.
Topics: Humans; Palliative Care; Surveys and Questionnaires; Health Knowledge, Attitudes, Practice; Attitude of Health Personnel
PubMed: 37773660
DOI: No ID Found -
What is an "early palliative care" intervention? A scoping review of controlled studies in oncology.Cancer Medicine Dec 2023Early palliative care (EPC) has been advocated to improve cancer patients' health. However, EPC differs with regard to its elements and target groups. It is not known... (Review)
Review
INTRODUCTION
Early palliative care (EPC) has been advocated to improve cancer patients' health. However, EPC differs with regard to its elements and target groups. It is not known which parts of EPC contribute to effectiveness for which patient group. This scoping review provides a structured analysis of EPC interventions and outcome measures.
DESIGN
We searched EMBASE, MEDLINE, CINAHL, and CENTRAL up to February 2022. We included randomized controlled trials (RCT), nonrandomized trials, cohort studies (CS), and controlled before-after studies of EPC in adult patients in English, Dutch, and German language. Interventions had to be self-labeled as EPC. Screening and data extraction were performed by two raters. A structured analysis incorporating the TIDieR checklist was performed to describe the elements of the interventions.
RESULTS
We screened 2651 articles, resulting in 40 articles being included: 34 studies were RCT and six studies were CS with a mean sample size of 208 patients. Patients with pancreatic (n = 10) and lung cancer (n = 9) were most often included. Studies reported different reference points for the onset of EPC such as time after diagnosis of incurable cancer (n = 18) or prognosis (n = 9). Thirteen studies provided information about elements of EPC and eight studies about the control intervention. Most frequent elements of EPC were symptom management (n = 28), case management (n = 16), and advance care planning (ACP; n = 15). Most frequently reported outcome measures were health-related quality of life (n = 26), symptom intensity (n = 6), resource use, and the patient's mood (n = 4 each).
CONCLUSION
The elicited heterogeneity of ECP in combination with deficits of reporting are considerable barriers that should be addressed to further develop effective EPC interventions for different groups of cancer patients.
Topics: Adult; Humans; Affect; Lung Neoplasms; Palliative Care; Quality of Life; Randomized Controlled Trials as Topic
PubMed: 37902232
DOI: 10.1002/cam4.6490 -
Breast Cancer Research and Treatment Aug 2023The potential disparities in palliative care delivery for underrepresented minorities with breast cancer are not well known. We sought to determine whether race and... (Comparative Study)
Comparative Study
PURPOSE
The potential disparities in palliative care delivery for underrepresented minorities with breast cancer are not well known. We sought to determine whether race and ethnicity impact the receipt of palliative care for patients with metastatic breast cancer (MBC).
METHODS
We retrospectively reviewed the National Cancer Database for female patients diagnosed with stage IV breast cancer between 2010 and 2017 who received palliative care following diagnosis of MBC to assess the proportion of patients who received palliative care, including non-curative-intent local-regional or systemic therapy. Multivariable logistic regression analysis was performed to identify variables associated with receiving palliative care.
RESULTS
60,685 patients were diagnosed with de novo MBC. Of these, only 21.4% (n = 12,963) received a palliative care service. Overall, there was a positive trend in palliative care receipt from 18.2% in 2010 to 23.0% in 2017 (P < 0.001), which persisted when stratified by race and ethnicity. Relative to non-Hispanic White women, Asian/Pacific Islander women (aOR 0.80, 95% CI 0.71-0.90, P < 0.001), Hispanic women (adjusted odds ratio [aOR] 0.69, 95% CI 0.63-0.76, P < 0.001), and non-Hispanic Black women (aOR 0.94, 95% CI 0.88-0.99, P = 0.03) were less likely to receive palliative care.
CONCLUSIONS
Fewer than 25% of women with MBC received palliative care between 2010 and 2017. While palliative care has significantly increased for all racial/ethnic groups, Hispanic White, Black, and Asian/Pacific Islander women with MBC still receive significantly less palliative care than non-Hispanic White women. Further research is needed to identify the socioeconomic and cultural barriers to palliative care utilization.
Topics: Female; Humans; Breast Neoplasms; Ethnicity; Healthcare Disparities; Hispanic or Latino; Palliative Care; Retrospective Studies; United States; White; Asian American Native Hawaiian and Pacific Islander; Black or African American
PubMed: 37269438
DOI: 10.1007/s10549-023-06963-7 -
Annals of Palliative Medicine Sep 2023
Topics: Humans; Palliative Care
PubMed: 37303215
DOI: 10.21037/apm-23-281 -
Palliative Medicine Dec 2023Patients in receipt of palliative care services are often viewed primarily as recipients of support from their family caregiver. There is a dearth of evidence in...
BACKGROUND
Patients in receipt of palliative care services are often viewed primarily as recipients of support from their family caregiver. There is a dearth of evidence in palliative care on what comprises mutual support between patients and their family caregivers in palliative care.
AIM
To identify processes of mutual support between patients and family caregivers in palliative care.
DESIGN
Qualitative study comprising semi-structured interviews. Data were analysed using grounded theory procedures.
SETTING/PARTICIPANTS
Fifteen patients with advanced illness (cancer = 14, neurodegenerative = 1) and 21 family caregivers recruited from a large regional-based hospice.
RESULTS
Mutual support between patients and family caregivers comprised two primary modes in which support was provided and received. Mutual support involved both patients and family caregivers providing similar types of support to each other, and which typically manifested as emotional support. However, mutual support also occurred when patients reciprocated by providing emotional support to their family caregivers to compensate for other forms of support which they felt no longer able to provide. Patients supported family caregivers by involving them in decision-making for care and both patient and family caregiver preferences were influenced by obligation to their respective other. Mutual support comprised both disclosure and concealment. Involving family caregivers in patient care decision-making was intended by patients to help family caregivers adjust to a caregiving role.
CONCLUSIONS
The findings inform the development and delivery of psychosocial interventions for patients and family caregivers in palliative care aimed at facilitating supportive relations between them.
Topics: Humans; Palliative Care; Caregivers; Hospice Care; Hospice and Palliative Care Nursing; Qualitative Research; Family
PubMed: 37830745
DOI: 10.1177/02692163231205130 -
Palliative Medicine Jan 2024People with Parkinson's disease has significant and increasing physical, psychosocial and spiritual needs, as well as problems with coordination and continuity of care.... (Review)
Review
BACKGROUND
People with Parkinson's disease has significant and increasing physical, psychosocial and spiritual needs, as well as problems with coordination and continuity of care. Despite the benefits that palliative care could offer, there is no consensus on how it should be delivered.
AIM
The aim of this study is to provide a pragmatic overview of the evidence to make clinical recommendations to improve palliative care for people with Parkinson's disease and their caregivers.
DESIGN
A systematic review method was adopted to determine the strength of evidence, supported by feedback from an expert panel, to generate the 'do', 'do not do' and 'do not know' recommendations for palliative care.
DATA SOURCES
Searches were conducted via OVID to access CINAHL, MEDLINE, EMBASE and the Cochrane Library from 01/01/2006 to 31/05/2021. An additional search was conducted in December 2022. The search was limited to articles that included empirical studies of approaches to enabling palliative care.
RESULTS
A total of 62 studies met inclusion criteria. There is evidence that education about palliative care and movement disorders is essential. palliative care should be multi-disciplinary, individualised and coordinated. Proactive involvement and support of caregivers throughout the illness is recommended. Limited data provide referral indicators for palliative care integration. Discussions about advance care planning should be held early.
CONCLUSIONS
Consideration of palliative care integration based on symptom burden and personal preferences, coordination and continuity of care are needed to maintain the quality of life of people with Parkinson's disease and their caregivers.
Topics: Humans; Palliative Care; Parkinson Disease; Caregivers; Quality of Life; Advance Care Planning
PubMed: 38054428
DOI: 10.1177/02692163231214408 -
Palliative Medicine Apr 2024Shared decision-making is a key element of person-centred care and promoted as the favoured model in preference-sensitive decision-making. Limitations to implementation... (Review)
Review
BACKGROUND
Shared decision-making is a key element of person-centred care and promoted as the favoured model in preference-sensitive decision-making. Limitations to implementation have been observed, and barriers and limitations, both generally and in the palliative setting, have been highlighted. More knowledge about the process of shared decision-making in palliative cancer care would assist in addressing these limitations.
AIM
To identify and synthesise qualitative data on how people with cancer, informal carers and healthcare professionals experience and perceive shared decision-making in palliative cancer care.
DESIGN
A systematic review and metasynthesis of qualitative studies. We analysed data using inductive thematic analysis.
DATA SOURCES
We searched five electronic databases (MEDLINE, EMBASE, PsycINFO, CINAHL and Scopus) from inception until June 2023, supplemented by backward searches.
RESULTS
We identified and included 23 studies, reported in 26 papers. Our analysis produced four analytical themes; (1) Overwhelming situation of 'no choice', (2) Processes vary depending on the timings and nature of the decisions involved, (3) Patient-physician dyad is central to decision-making, with surrounding support and (4) Level of involvement depends on interactions between individuals and systems.
CONCLUSION
Shared decision-making in palliative cancer care is a complex process of many decisions in a challenging, multifaceted and evolving situation where equipoise and choice are limited. Implications for practice: Implementing shared decision-making in clinical practice requires (1) clarifying conceptual confusion, (2) including members of the interprofessional team in the shared decision-making process and (3) adapting the approach to the ambiguous, existential situations which arise in palliative cancer care.
Topics: Humans; Physician-Patient Relations; Health Personnel; Caregivers; Palliative Care; Decision Making; Neoplasms
PubMed: 38481012
DOI: 10.1177/02692163241238384 -
BMC Medical Ethics Aug 2023Thirst and dry mouth are common symptoms in terminally ill patients. In their day-to-day practice, palliative care physicians regularly encounter ethical dilemmas,...
BACKGROUND
Thirst and dry mouth are common symptoms in terminally ill patients. In their day-to-day practice, palliative care physicians regularly encounter ethical dilemmas, especially regarding artificial hydration. Few studies have focused on thirst and the ethical dilemmas palliative care physicians encounter in relation to this, leading to a knowledge gap in this area.
AIM
The aim of this study was to explore palliative care physicians' experiences of ethical challenges in relation to thirst in terminally ill patients.
METHODS
A qualitative interview study with an inductive approach was conducted. Sixteen physicians working in four different specialised palliative care units and one geriatric care unit in different hospitals in Sweden were interviewed. The interviews were transcribed verbatim and analysed with a reflexive thematic analysis.
RESULTS
When presented with an ethical challenge relating to thirst, physicians attempted to balance benefits and harms while emphasizing respect for the patient's autonomy. The ethical challenges in this study were: Starting, continuing or discontinuing drips; lack of evidence and traditions create doubt; and lack of interest and time may result in patient suffering.
CONCLUSIONS
All physicians in this study reported that "Starting, continuing or discontinuing drips" was the main ethical challenge they encountered, where some were so accustomed to the decision that they had a standard answer ready to offer patients and families. Physicians reported that drips were a symbol of thirst quenching, life and survival but were not necessary in end-of-life care. Others questioned the traditions regarding thirst and emphasised drips in particular.
Topics: Humans; Aged; Palliative Care; Thirst; Terminal Care; Physicians; Sweden; Qualitative Research
PubMed: 37559116
DOI: 10.1186/s12910-023-00943-8 -
European Journal of Heart Failure Sep 2023The delivery of effective healthcare entails the configuration and resourcing of health economies to address the burden of disease, including acute and chronic heart...
Culture, ethnicity, and socio-economic status as determinants of the management of patients with advanced heart failure who need palliative care: A clinical consensus statement from the Heart Failure Association (HFA) of the ESC, the ESC Patient Forum, and the European Association of Palliative...
The delivery of effective healthcare entails the configuration and resourcing of health economies to address the burden of disease, including acute and chronic heart failure, that affects local populations. Increasing migration is leading to more multicultural and ethnically diverse societies worldwide, with migration research suggesting that minority populations are often subject to discrimination, socio-economic disadvantage, and inequity of access to optimal clinical support. Within these contexts, the provision of person-centred care requires medical and nursing staff to be aware of and become adept in navigating the nuances of cultural diversity, and how that can impact some individuals and families entrusted to their care. This paper will examine current evidence, provide practical guidance, and signpost professionals on developing cultural competence within the setting of patients with advanced heart failure who may benefit from palliative care.
Topics: Humans; Palliative Care; Heart Failure; Ethnicity; Economic Status; Chronic Disease
PubMed: 37477052
DOI: 10.1002/ejhf.2973 -
Frontiers in Public Health 2023Approximately 60 million people require palliative care worldwide, and nearly 80% of them live in low- and middle-income countries (LMICs). Providing palliative care in...
Approximately 60 million people require palliative care worldwide, and nearly 80% of them live in low- and middle-income countries (LMICs). Providing palliative care in remote and rural areas of LMICs requires special consideration to ensure equitable access to healthcare. This perspective aims to deliver pragmatic, context-oriented policy recommendations designed to improve palliative care outcomes in Kazakhstan by capitalizing on existing resources and considering its unique geopolitical and sociocultural context. With approximately half of the population in Kazakhstan residing in remote and rural regions, the provision of healthcare services - specifically palliative care - mandates particular attention to ensure equal access to high-quality care. To understand challenges of implementing palliative care in remote and rural regions of Kazakhstan and to propose tailored solutions, 29 key stakeholders, including family caregivers, health professionals, and palliative care administrators, were identified in five regions of Kazakhstan. The main challenges encountered by family caregivers include lack of palliative care skills, the need for home-based care from mobile services, and high out-of-pocket expenditures. The challenges highlighted by healthcare providers and administrators were the lack of formal education in palliative care, shortage of opioids, and limited societal awareness and state support. Based on challenges elaborated from stakeholders and existing literature in palliative care and family caregiving, this perspective advocates against replicating the strategies implemented in high-income countries. Family caregivers play a critical role in implementing affordable and efficient palliative care in resource-limited settings. Enhancing their competencies through digital training and increasing access to palliative care services through mobile teams are tailored and localized solutions that address specific challenges in Kazakhstan. It is postulated that these recommendations may find utility in other LMICs, potentially benefiting nearly 48 million individuals who require these services.
Topics: Humans; Palliative Care; Caregivers; Developing Countries; Kazakhstan; Health Personnel
PubMed: 37601198
DOI: 10.3389/fpubh.2023.1186107