Dataset Information

Specialist palliative care until the very end of life - reports of family caregivers and the multiprofessional team.

ABSTRACT:

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.

SUBMITTER: Ullrich A

PROVIDER: S-EPMC10563273 | biostudies-literature | 2023 Oct

REPOSITORIES: biostudies-literature

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Publications

Specialist palliative care until the very end of life - reports of family caregivers and the multiprofessional team.

Ullrich Anneke A Goldbach Sven S Hollburg Wiebke W Wagener Bettina B Rommel Annette A Müller Marten M Kirsch Denise D Kopplin-Foertsch Katrin K Schulz Holger H Bokemeyer Carsten C Oechsle Karin K

BMC palliative care 20231010 1

<h4>Background</h4>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.<h4>Methods</h4>Using the Palliative Care Outcome Scale (POS; Score 0-40), proxy assessments of SPC outcomes in the patient's last 3 da ...[more]

PMID: 37814271

Similar Datasets

Project description:BackgroundDigital health technologies such as sensor systems are intended to support healthcare staff in providing adequate patient care. In the Department of Palliative Medicine (University Medical Center Freiburg), we developed and implemented a noninvasive, bed-based sensor system in a pilot study. The aim was to detect distress in patients who were no longer able to express themselves by monitoring heart and respiratory rates, vocalizations, and movement measurements. The sensor system was intended to supplement standard care, which generally cannot guarantee constant monitoring. As there is a lack of data on how healthcare professionals experience such a techno-digital innovation, the aim of this study was to explore how the multiprofessional palliative care team who piloted the sensor system perceived its potential benefits and limitations, and how they experienced the broader context of healthcare technology and research in palliative care.MethodsWe conducted a qualitative interview study with 20 members of the palliative care team and analyzed the recorded, verbatim transcribed interviews using qualitative content analysis.ResultsThe sensor system was described as easy to use and as helpful support for patients, care staff, and relatives, especially against the backdrop of demographic change. However, it could not replace human interpretation of stress and subsequent treatment decisions: this remained the expertise of the nursing staff. A potential reduction in personnel was expected to be a risk of a digital monitoring system. The special conditions of research and digital health technologies in an end-of-life context also became clear. Specifically, healthcare staff were open to health technologies if they benefited the patient and were compatible with professional nursing and/or palliative care attitudes. Additionally, a patient-protective attitude and possible interprofessional differences in priorities and the resulting challenges for the team became apparent.ConclusionsA potential digital solution for distress monitoring was considered useful by palliative care practitioners. However, interprofessional differences and compatibility with existing palliative care practices need to be considered before implementing such a system. To increase user acceptability, the perspectives of healthcare professionals should be included in the implementation of technological innovations in palliative care.

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Project description:IntroductionCaring for a family member with a palliative diagnosis at home is physically and mentally stressful. This prospective study explores the emotional and physical burdens experienced by family caregivers in end-of-life palliative care settings, particularly focusing on those caregivers with high levels of pre-existing trait anxiety. The following hypotheses were examined: 1.) Family caregivers with high levels of trait anxiety suffer from high levels of anxiety, stress, burnout symptoms, insomnia, daytime sleepiness, physical complaints, health-related anxiety and resentments. 2.) Caregivers with a high level of trait anxiety are less resilient and receive less social support. They are more likely to use inappropriate strategies in the context of emotional regulation and work-related behavior. 3.) The support provided by the mobile palliative care team reduces stress and improves the quality of sleep of the caregiving relatives.MethodsForty-seven caregivers participated, with assessments conducted at two time points: before the mobile palliative care team's intervention and six weeks later. Data collection included measures such as the State-Trait Anxiety Inventory (STAI), Whiteley Index (WI), Perceived Stress Scale (PSS-10), Maslach Burnout Inventory (MBI-HSS), Insomnia Severity Index (ISI), Epworth Sleepiness Scale (ESS), Giessen Complaints Questionnaire, Berner Bitterness Inventory (BVI), Brief Resilience Coping Scale, FEEL-E for emotional regulation, AVEM, and the MOS Social Support Survey.ResultsHigh levels of trait anxiety among caregivers were significantly associated with increased anxiety, stress, emotional exhaustion, depersonalization, insomnia, and feelings of resentment. Notably, maladaptive emotional regulation strategies were also prevalent. Intervention by the mobile palliative care team significantly reduced stress and insomnia, showing benefits across all levels of trait anxiety.ConclusionFamily caregivers with high trait anxiety face significant challenges in end-of-life palliative care settings, indicating a crucial need for early identification and comprehensive biopsychosocial support to mitigate adverse emotional and physical health outcomes.

Dataset Information

Specialist palliative care until the very end of life - reports of family caregivers and the multiprofessional team.

Background

Methods

Results

Conclusions

Publications

Specialist palliative care until the very end of life - reports of family caregivers and the multiprofessional team.

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