-
Supportive Care in Cancer : Official... Jun 2024While numerous studies underscore the benefits of early palliative care (EPC) for patients with solid tumors, its effects on patients with multiple myeloma (MM) are not...
PURPOSE
While numerous studies underscore the benefits of early palliative care (EPC) for patients with solid tumors, its effects on patients with multiple myeloma (MM) are not as widely known. This study aims to determine the effects of EPC integration on patients with newly diagnosed symptomatic MM and the feasibility of this approach.
METHODS
This prospective cohort study enrolled patients within eight weeks of diagnosis. Participants met with a palliative care team monthly for 12 months. Functional Assessment of Cancer Therapy-General (FACT-G) plus Multiple Myeloma Subscale (FACT-MM), and Hospital Anxiety and Depression Scale (HADS) were administered upon enrollment and every three months. Proportion of completed visits and assessments determined the feasibility of EPC.
RESULTS
Of the twenty participants enrolled from January 2020 to November 2022, median age was 65 (range 40, 77), 15 (75%) were female, 15 (75%) were white, 65% completed assessments at six months, and 60% at 12 months. The following measures significantly improved at 12 months versus baseline: FACT-G scores increased by 15.1 points (adjusted 95% CI: 2.2-28.1, adjusted p = 0.02); Functional Well-Being scores increased by 6.0 points (adjusted 95% CI: 1.1-10.9, adjusted p = 0.01); and Pain Subscale scores increased by 3.4 points (adjusted 95% CI: 0.5-6.4, adjusted p = 0.02). Depression and anxiety scores did not significantly change over time.
CONCLUSION
Functional well-being, pain experience and overall QOL improved in a cohort of patients with newly diagnosed MM after 12 months of EPC involvement. Although monthly visits seemed feasible, the findings suggest that further research is needed to explore the optimal timing of palliative care interventions in the MM trajectory.
TRIAL REGISTRATION
ClinicalTrials.gov ID NCT04248244 (Registration Date: January 30, 2020).
Topics: Humans; Multiple Myeloma; Female; Male; Palliative Care; Middle Aged; Aged; Prospective Studies; Adult; Quality of Life; Cohort Studies; Depression; Anxiety
PubMed: 38937310
DOI: 10.1007/s00520-024-08665-2 -
Medical Humanities Jun 2024Stories about personal experiences of assisted dying, a term comprising both instances when a lethal substance is administered by a physician or by the patient...
Stories about personal experiences of assisted dying, a term comprising both instances when a lethal substance is administered by a physician or by the patient themselves, are frequently cited in law-making processes. These experiences of healthcare systems and the laws governing end-of-life procedures thereby interactively influence the future of medicine at the deathbed. With more countries legalising some form of assisted dying or opening political debate about the issue, addressing how these personal stories shape public opinions and social institutions is timely. In this current controversy, we question how medical humanities researchers are to make sense of the role of these stories in law-making, and critically reflect on a digital archive that seeks to make these interconnections visible. At the methodological level, the reciprocal interactions in assisted dying between medicine, law and the arts urges us to reconsider the conceptual foundations of interdisciplinary research in the medical humanities.
PubMed: 38937089
DOI: 10.1136/medhum-2024-012947 -
BMJ Supportive & Palliative Care Jun 2024Regional hospice and palliative care networks (RHPCNs) are increasingly being established to improve integrative care for patients with life-limiting illnesses. This...
BACKGROUND
Regional hospice and palliative care networks (RHPCNs) are increasingly being established to improve integrative care for patients with life-limiting illnesses. This scoping review aimed at identifying and synthesising international literature on RHPCNs, focusing on structures, outcomes, benefits, success factors and good practices.
METHOD
Following Arksey and O'Malley's (2005) framework, a search of four electronic databases (CINAHL, Google Scholar, PubMed, Web of Science Core Collection) was conducted on 7 July 2023. Additionally, a manual search of reference lists of the identified articles was performed. Original research, qualification theses and descriptive reports on RHPCNs at a structural level were included.
FINDINGS
Two researchers analysed 777 article abstracts, screened 104 full texts and selected 24 articles. The included studies predominantly used qualitative designs. RHPCNs self-identify as local stakeholders, employ coordination offices and steering committees, and actively recruit network partners. Outcomes included improved professional practices, enhanced quality of care, increased patient utilisation of regional care offerings and improved patient transitions between care providers. Success factors included clear coordination, transparent communication, strategic planning and resource-securing strategies.
CONCLUSIONS
The analysis identified key RHPCN success factors such as effective communication and adaptive leadership. Despite the need for further research, the findings emphasise RHPCNs' potential to improve palliative care and encourage policymaker support.
OTHER
This scoping review is part of the research project HOPAN, which aims at assessing and analysing RHPCNs in Germany. The project is funded by the German Innovation Fund of the Federal Joint Committee (G-BA) (Grant N° 01VSF22042; funding period: 01/2023-12/2024).
PubMed: 38936971
DOI: 10.1136/spcare-2024-004974 -
BMJ Supportive & Palliative Care Jun 2024Lower rates of goals of care (GOC) conversations have been observed in non-white hospitalised patients, which may contribute to racial disparities in end-of-life care....
OBJECTIVES
Lower rates of goals of care (GOC) conversations have been observed in non-white hospitalised patients, which may contribute to racial disparities in end-of-life care. We aimed to assess how a targeted initiative to increase GOC documentation rates is associated with GOC documentation by race.
METHODS
We retrospectively assessed GOC documentation during a targeted GOC initiative for adult patients with an artificial intelligence predicted elevated risk of mortality. Patients were admitted to an urban academic medical centre in Pittsburgh, Pennsylvania between July 2021 and 31 December 2022.
RESULTS
The 3643 studied patients had a median age of 72 (SD 13.0) and were predominantly white (87%) with 42% admitted to an intensive care unit and 15% dying during admission. GOC documentation was completed for 28% (n=1019/3643). By race, GOC was documented for 30% black (n=105/351), 28% white (n=883/3161) and 24% other (n=31/131) patients (p=0.3933). There was no statistical difference in the rate of documented GOC among races over time (p=0.5142).
CONCLUSIONS
A targeted initiative to increase documented GOC conversations for hospitalised patients with an elevated risk of mortality is associated with similar documentation rates across racial groups. Further research is needed to assess whether this initiative may promote racial equity in GOC documentation in other settings.
PubMed: 38936969
DOI: 10.1136/spcare-2023-004657 -
The British Journal of General Practice... Jul 2024
Topics: Humans; Accidental Falls; Aged; Primary Health Care; Risk Factors; Female; Male; Risk Assessment
PubMed: 38936874
DOI: 10.3399/bjgp24X738765 -
Journal of Nursing Care Quality Jun 2024Frailty is independently associated with adverse patient outcomes after surgery. The current standards of postoperative care rarely consider frailty status.
BACKGROUND
Frailty is independently associated with adverse patient outcomes after surgery. The current standards of postoperative care rarely consider frailty status.
LOCAL PROBLEM
There was no standardized protocol to optimize specialized postoperative care for frail patients at an academic medical center.
METHODS
A quasi-experimental pre-/postimplementation study design, using the Reach, Effectiveness, Adoption, Implementation, Maintenance implementation framework, was utilized.
INTERVENTIONS
A frailty-specific postoperative order set (FPOS) was developed, including tailored nursing care, activity levels, and nutritional goals.
RESULTS
There were significant improvements in nurse's self-reported familiarity with frailty (P = .003) and FPOS awareness (P < .001). The number of orders for delirium prevention, elimination, nutrition, sleep promotion, and sensory support increased (P < .001).
CONCLUSIONS
Implementing an FPOS showed improvements in nurse frailty knowledge, awareness, and order set utilization.
PubMed: 38936412
DOI: 10.1097/NCQ.0000000000000784 -
PloS One 2024The role of non-kin caregivers, such as friends, neighbours, and acquaintances, in providing end-of-life care is significant but often overlooked in research and policy...
BACKGROUND
The role of non-kin caregivers, such as friends, neighbours, and acquaintances, in providing end-of-life care is significant but often overlooked in research and policy discussions. These caregivers provide extensive support for individuals in end-of-life care, in addition to or instead of family members. However, there is limited evidence in the literature regarding the experiences, burdens, and benefits of non-kin caregivers.
AIMS
The aim of this research is to examine the role and contributions of non-kin caregivers in end-of-life care. The study intends to uncover their experiences, associated challenges, benefits, and requirements for support.
METHODS
In order to achieve this objective, a mixed-methods approach will be employed, gathering data through structured questionnaires from approximately 150 non-kin caregivers and in-depth interviews with up to 25 participants. The questionnaires will measure the impact, burden, and benefits of caregiving. The Burden Scale for Family Caregivers, the Benefits of Being a Caregiver Scale, the Family Inventory of Needs, the Positive Mental Health Scale, a Graphic Closeness Scale, and selected items of the Eurofamcare Common Assessment Tool for socio-demographic and caregiving-related data will be used. Quantitative data will be analysed using IBM SPSS Statistics 28 for descriptive analysis and group comparison. The objective of the qualitative in-depth interviews is to obtain a comprehensive picture of the personal experiences, motivations and support needs of members of the non-kin caregivers cohort, who are as heterogeneous as possible in terms of gender, socio-economic status, and facility with the German language. The qualitative data from the interviews will be examined using MAXQDA software, adopting a grounded theory approach for analysis.
DISCUSSION
This research will develop a comprehensive framework that captures the nuanced experiences of non-kin caregivers at the end of life. The framework will identify areas where support for non-kin caregivers is lacking and where further research is needed.
TRIAL REGISTRATION
The study was prospectively registered in the German Clinical Trials Register (Deutsches Register Klinischer Studien) (Registration N° DRKS00033889; date of registration: 05 April 2024). The study is searchable under the International Clinical Trials Registry Platform Search Portal of the World Health Organization, under the German Clinical Trials Register number.
Topics: Humans; Caregivers; Terminally Ill; Surveys and Questionnaires; Terminal Care; Family; Male; Female
PubMed: 38935665
DOI: 10.1371/journal.pone.0306282 -
Journal of Palliative Medicine Jun 2024When advance care plans are not communicated or goals are in conflict, significant family and clinician distress may result. The distress is especially high when...
When advance care plans are not communicated or goals are in conflict, significant family and clinician distress may result. The distress is especially high when potentially nongoal concordant care is expected by surrogates in the emergency department (ED). To demonstrate the effect of off-hour, phone consultations by palliative care clinicians in reducing the family and clinician distress when nongoal concordant care is expected in the ED. A partnership between palliative care and emergency medicine can decrease the burden of decision making and provide opportunities for modeling a goals-of-care discussion by experts in this important procedure.
Topics: Humans; Palliative Care; Emergency Service, Hospital; Advance Care Planning; Male; Female; Middle Aged; Aged; Decision Making; Adult; Aged, 80 and over
PubMed: 38935487
DOI: 10.1089/jpm.2023.0371 -
JMIR Formative Research Jun 2024Serious illness conversations may help patients avoid unwanted treatments. We previously piloted the telehealth Serious Illness Care Program (SICP) for older adults with...
BACKGROUND
Serious illness conversations may help patients avoid unwanted treatments. We previously piloted the telehealth Serious Illness Care Program (SICP) for older adults with acute myeloid leukemia and myelodysplastic syndrome.
OBJECTIVE
In this study, we aimed to understand the experience of the telehealth SICP from the clinician's perspective.
METHODS
We studied 10 clinicians who delivered the telehealth SICP to 20 older adults with acute myeloid leukemia or myelodysplastic syndrome. Quantitative outcomes included confidence and acceptability. Confidence was measured using a 22-item survey (range 1-7; a higher score is better). Acceptability was measured using an 11-item survey (5-point Likert scale). Hypothesis testing was performed at α=.10 (2-tailed) due to the pilot nature and small sample size. Clinicians participated in audio-recorded qualitative interviews at the end of the study to discuss their experience.
RESULTS
A total of 8 clinicians completed the confidence measure and 7 clinicians completed the acceptability measure. We found a statistically significant increase in overall confidence (mean increase of 0.5, SD 0.6; P=.03). The largest increase in confidence was in helping families with reconciliation and goodbye (mean 1.4, SD 1.5; P=.04). The majority of clinicians agreed that the format was simple (6/7, 86%) and easy to use (6/7, 86%). Clinicians felt that the telehealth SICP was effective in understanding their patients' values about end-of-life care (7/7, 100%). A total of three qualitative themes emerged: (1) the telehealth SICP deepened relationships and renewed trust; (2) each telehealth SICP visit felt unique and personal in a positive way; and (3) uninterrupted, unrushed time optimized the visit experience.
CONCLUSIONS
The telehealth SICP increased confidence in having serious illness conversations while deepening patient-clinician relationships.
TRIAL REGISTRATION
ClinicalTrials.gov NCT04745676; https://www.clinicaltrials.gov/study/NCT04745676.
PubMed: 38935428
DOI: 10.2196/58503 -
Death Studies Jun 2024This scoping review aimed to identify the theory-based studies related to grief and bereavement in palliative care. The investigation was carried out by searching seven...
This scoping review aimed to identify the theory-based studies related to grief and bereavement in palliative care. The investigation was carried out by searching seven databases and conducting manual searches. The search procedure yielded 51 scholarly papers, which revealed 33 theories or models and 37 instruments. The theories and models can be classified into distinct categories, namely grief patterns and coping mechanisms. This study can be a valuable reference for future research endeavors, particularly those employing deductive methodologies. It offers guidance in selecting appropriate theories or models that can be applied to further studies.
PubMed: 38935108
DOI: 10.1080/07481187.2024.2370460