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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 -
Pediatric Pulmonology Jun 2024A primary palliative care model for cystic fibrosis (CF) recommends using the Integrated Palliative Care Outcome Scale (IPOS) for screening. Validation of the IPOS is...
BACKGROUND
A primary palliative care model for cystic fibrosis (CF) recommends using the Integrated Palliative Care Outcome Scale (IPOS) for screening. Validation of the IPOS is needed.
METHODS
This secondary analysis utilized baseline data from a multisite trial of the palliative care model, Improving Life with CF. Adults with CF completed the IPOS, the Memorial Symptom Assessment Scale-CF (MSAS-CF), the CF Questionnaire-Revised (CFQ-R), the Patient Health Questionnaire (PHQ-8), the Generalized Anxiety Disorder (GAD-7), and the Perceived Stress Scale (PSS). IPOS structure was assessed using Cronbach α coefficients and a factor analysis. Construct validity was evaluated through bivariate relationships between IPOS scores and other questionnaire scores, and linear regressions assessing the extent to which the IPOS explains variance in quality-of-life domains.
RESULTS
The sample comprised 256 adults with complete IPOS data. α coefficients were .86 for the IPOS total score, .81 for the Physical Symptoms subscale, .79 for the Emotional Symptoms subscale, and .63 for the Communication/Practical Issues subscale. A two-component factor structure best aligned with the current subscales. IPOS scores were significantly associated with other measures; associations with MSAS-CF and CFQ-R subscales differentiated the IPOS Physical and Emotional subscales. The IPOS total score provided unique information about the variance in the CFQ-R Physical Functioning and Respiratory Symptoms domain scores.
CONCLUSIONS
In adults with CF, the IPOS has acceptable internal consistency and there is evidence of construct validity. These findings support adoption of the IPOS in the primary palliative care model for CF.
PubMed: 38934771
DOI: 10.1002/ppul.27143 -
Inflammatory Bowel Diseases Jun 2024Despite the growing proportion of older adults with inflammatory bowel disease (IBD), their lived experience is not well understood. IBD literature is generally focused...
BACKGROUND
Despite the growing proportion of older adults with inflammatory bowel disease (IBD), their lived experience is not well understood. IBD literature is generally focused on younger adults, and few studies are qualitative. Older adults may report well-being differently than younger adults, so it is important that we learn about their goals and priorities with a chronic disease.
OBJECTIVE
The study sought to understand the lived experience of older adults with IBD and explore their perceptions and priorities.
METHODS
We conducted in-depth interviews with patients ≥60 years of age with IBD to evaluate the impact and perception of IBD in the context their overall health and life. We used a hybrid inductive-deductive thematic analysis of our transcripts to identify underlying patterns.
RESULTS
We achieved thematic saturation after 22 interviews. We produced 4 major themes: (1) having IBD at an older age, (2) financial ramifications of IBD at an older age, (3) expectations for a meaningful life, and (4) unmet needs. Prominent subthemes included (1) ageism, loss of autonomy, and barriers to healthcare; (2) retirement and insurance issues; (3) redefining quality of life and gratitude; and (4) social isolation and navigating daily life with IBD.
CONCLUSIONS
Having IBD later in life presents unique challenges. Physicians treating older patients should consider age-sensitive communication, susceptibility to social isolation, and practices for healthy aging in the context of IBD. Patient priorities for further investigation include more representation in the media and educational material tailored for older adults with IBD.
PubMed: 38934627
DOI: 10.1093/ibd/izae139 -
Deutsches Arzteblatt International May 2024
Comparative Study
Topics: Germany; Humans; Palliative Care; Ambulatory Care; Male; Female; National Health Programs; Middle Aged; Aged; Adult; Aged, 80 and over; Medicine
PubMed: 38934069
DOI: 10.3238/arztebl.m2024.0017