Inpatient palliative care use by patients with sickle cell disease: a retrospective cross-sectional study

Objective
Sickle cell disease (SCD) is a highly morbid condition notable for recurrent hospitalisations due to vaso-occlusive crises and complications of end organ damage. Little is known about the use of inpatient palliative care services in adult patients with SCD. This study aims to evaluate inpatient palliative care use during SCD-related hospitalisations overall and during terminal hospitalisations. We hypothesise that use of palliative care is low in SCD hospitalisations.

Design
A retrospective cross-sectional study using data from the National Inpatient Sample from 2008 to 2017 was conducted.

Setting
US hospitals from 47 states and the District of Columbia.

Participants
Patients >18 years old hospitalised with a primary or secondary International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM) or ICD-10-CM diagnosis of SCD were included.

Primary and secondary outcome measures
Palliative care service use (documented by ICD-9-CM and ICD-10-CM diagnosis codes V66.7 and Z51.5).

Results
987 555 SCD-related hospitalisations were identified, of which 4442 (0.45%) received palliative care service. Palliative care service use increased at a rate of 9.2% per year (95% CI 5.6 to 12.9). NH-black and Hispanic patients were 33% and 53% less likely to have palliative care services compared with NH-white patients (OR 0.67; 95% CI 0.45 to 0.99 and OR 0.47; 95% CI 0.26 to 0.84). Female patients (OR 0.40; 95% CI 0.21 to 0.76), Medicaid use (OR 0.40; 95% CI 0.21 to 0.78), rural (OR 0.47; 95% CI 0.28 to 0.79) and urban non-teaching hospitals (OR 0.61; 95% CI 0.47 to 0.80) each had a lower likelihood of palliative care services use.

Conclusion
Use of palliative care during SCD-related hospitalisations is increasing but remains low. Disparities associated with race and gender exist for use of palliative care services during SCD-related hospitalisation. Further studies are needed to guide evidence-based palliative care interventions for more comprehensive and equitable care of adult patients with SCD.

Leggi
Agosto 2022

Proxy-reported experiences of palliative, non-operative management of geriatric patients after a hip fracture: a qualitative study

Objective
The objective of this study was to explore the experiences from the period after the choice was made for palliative, non-operative management for geriatric patients with a hip fracture, to the most important factors in the process, as reported by a proxy.

Design
Semistructured interviews were conducted between 1 August 2020 and 1 April 2021 to investigate by-proxy reported patient experiences of non-operative management after hip fracture. Interviews followed a topic guide, recorded and transcribed per word. Thematic analysis was used to identify themes in the data.

Setting and participants
Patients were retrospectively identified from the electronic patient record. Relatives (proxies) of the patients who underwent palliative, non-operative management were contacted and were asked to participate in a semistructured interview and were named participants. The participants were proxies of the patients since patients were expected to be deceased during the timing of the interview.

Results
A total of 26 patients were considered eligible for inclusion in this study. The median age of the patients was 88 years (IQR 83–94). The 90-day mortality rate was 92.3%, with a median palliative care period of 11 days (IQR 4–26). A total of 19 participants were subjected to the interview. After thematic analysis, four recurring themes were identified: (1) the decision-making process, (2) pain experience, (3) patient–relative interaction and (4) the active dying.

Conclusions
With the introduction of shared decision-making in an acute setting for geriatric patients with hip fracture, proxies reported palliative, non-operative management as an acceptable and adequate option for patients with high risk of adverse outcomes after surgery. The emerged themes in palliative care for patients with hip fracture show great similarity with severe end-stage disease palliative care, with pain identified as the most important factor influencing comfort of the patient and their environment after hip fracture. Future research should focus on further improving targeted analgesia for these patients focusing on acute pain caused by the fracture.

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Agosto 2022

Palliative care interventions for people who use substances during communicable disease outbreaks: a scoping review

Objectives
When resources are strained during communicable disease outbreaks, novel palliative care interventions may be required to optimally support people who use substances with life-limiting illnesses. Therefore, we asked the question, ‘what is known about communicable disease outbreaks, palliative care and people who use substances?’, such as palliative care interventions that can improve the quality of life of patients with life-limiting illnesses.

Design
We conducted a scoping review that involved comprehensive searches in six bibliographic databases from inception to April 2021 (Medline ALL (Medline and Epub Ahead of Print and In-Process and Other Non-Indexed Citations), Embase Classic+Embase, Cochrane Database of Systematic Reviews, Cochrane Central Register of Controlled Trial, PsycInfo all from the OvidSP platform, Scopus from Elsevier) and grey literature searches. We included English and French records about people ≥18 years old with life-limiting illnesses who use substances during communicable disease outbreaks. We identified, summarised and presented the findings about palliative care interventions in figures, tables and narrative descriptions.

Results
We identified 32 records about palliative care interventions for people who use substances during communicable disease outbreaks. The majority focused on palliative care for people who use substances with AIDS during HIV epidemics (n=27, 84.4%), and approximately half were published in the USA (n=15, 46.9%). Most common substances used were alcohol (n=18, 56.3%), opioids (n=14, 43.8%) and cocaine (n=10, 31.3%). Four groups of palliative care interventions were identified: (1) symptom management (n=20, 62.5%), (2) psychosocial support (n=15, 46.9%), (3) advance care planning (n=8, 25.0%) and (4) healthcare provider training (n=6, 18.8%).

Conclusions
Beyond studies on HIV epidemics, there is limited knowledge about palliative care interventions for people who use substances during communicable disease outbreaks. Research and guidance are needed about how best to provide palliative care to this population with complex needs including in resource-limited countries.

Protocol
Buchman DZ, Ding P, Lo S, et al. Palliative care for people who use substances during communicable disease epidemics and pandemics. BMJ Open 2021; 11: e053124

Leggi
Agosto 2022

Effectiveness of a specialist palliative home care nurse-patient consultation followed by an interprofessional telephone case conference compared with usual care among patients with non-oncological palliative care needs: protocol for the multicentre KOPAL cluster-randomised controlled trial

Introduction
Progressive chronic, non-malignant diseases (CNMD) like congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD) and dementia are of growing relevance in primary care. Most of these patients suffer from severe symptoms, reduced quality of life and increased numbers of hospitalisations. Outpatient palliative care can help to reduce hospitalisation rate by up to 50%. Due to the complex medical conditions and prognostic uncertainty of the course of CNMD, early interprofessional care planning among general practitioners who provide general palliative care and specialist palliative home care (SPHC) teams seems mandatory. The KOPAL study (a concept for strenghtening interprofessional collaboration for patients with palliative care needs) will test the effectiveness of a SPHC nurse–patient consultation followed by an interprofessional telephone case conference.

Methods and analysis
Multicentre two-arm cluster randomised controlled trial KOPAL with usual care as control arm. The study is located in Northern Germany and aims to recruit 616 patients in 56 GP practices (because of pandemic reasons reduced to 191 participants). Randomisation will take place on GP practice level immediately after inclusion (intervention group/control group). Allocation concealment is carried out on confirmation of participation. Patients diagnosed with CHF (New York Heart Association (NYHA) classification 3–4), COPD (Global Initiative for Chronic Obstructive Lung Disease (GOLD) stage classification 3–4, group D) or dementia GDS stage 4 or above). Primary outcome is a reduced hospital admission within 48 weeks after baseline, secondary outcomes include symptom burden, quality of life and health costs. The primary analysis will follow the intention-to-treat principle. Intervention will be evaluated after the observation period using qualitative methods.

Ethics and dissemination
The responsible ethics committees of the cooperating centres approved the study. All steps of data collection, quality assurance and data analysis will continuously be monitored. The concept of KOPAL could serve as a blueprint for other regions and meet the challenges of geographical equity in end-of-life care.

Trial registration number
DRKS00017795; German Clinical Trials Register.

Leggi
Luglio 2022