Search

Background: The number of advanced heart failure patients with left ventricular assist devices (LVAD) is increasing. Despite guideline-recommendations, little is known about specialist palliative care involvement in LVAD-patients, especially in Europe. This study aims to investigate timing and setting of specialist palliative care in LVAD-patients., Methods: We conducted a retrospective multicenter study in 2022. Specialist palliative care services in German LVAD-centers were identified and invited to participate. Forty adult LVAD-patients (mean age 65 years (SD 7.9), 90% male) from seven centers that received a specialist palliative care consultation during hospitalization were included., Results: In 37 (67.3%) of the 55 LVAD-centers, specialist palliative care was available. The median duration between LVAD-implantation and first specialist palliative care contact was 17 months (IQR 6.3-50.3 months). Median duration between consultation and death was seven days (IQR 3-28 days). 65% of consults took place in an intensive/intermediate care unit with half of the patients having a Do-Not-Resuscitate order. Care planning significantly increased during involvement (advance directives before: n = 15, after: n = 19, p < 0.001; DNR before: n = 20, after: n = 28, p < 0.001). Symptom burden as assessed at first specialist palliative care contact was higher compared to the consultation requests (request: median 3 symptoms (IQR 3-6); first contact: median 9 (IQR 6-10); p < 0.001) with a focus on weakness, anxiety, overburdening of next-of-kin and dyspnea. More than 70% of patients died during index hospitalization, one third of these in a palliative care unit., Conclusions: This largest European multicenter investigation of LVAD-patients receiving specialist palliative care shows a late integration and high physical and psychosocial symptom burden. This study highlights the urgent need for earlier integration to identify and address poorly controlled symptoms. Further studies and educational efforts are needed to close the gap between guideline-recommendations and the current status quo., (© 2024. The Author(s).)

Background: Previous studies have demonstrated gender-specific impacts on symptoms and problems of patients receiving palliative care; however, there is limited knowledge about the impact of gender on the problems and needs of their family caregivers (FCs)., Methods: Using a qualitative design, semi-structured interviews with FCs and healthcare professionals (HCPs) of a specialist palliative care inpatient ward were conducted. Themes and categories were identified using qualitative content analysis, with data coded using MAXQDA., Results: Ten FCs (6 female, 4 male) and 16 HCPs (8 female, 8 male) were interviewed. Analysis revealed seven main categories of gendered problems and needs: role as FC, physical and emotional burden, self-care and coping strategies, adaptation to new life circumstances, interaction with the palliative care team, use of psychosocial or care-related support, as well as advance care planning and caregiving after inpatient palliative care. Stronger identification with the caregiver role, less consideration of own needs, and more active utilization of professional and informal support were ascribed to female FCs. With regard to male FCs, respondents had the impression of better self-caring strategies, less expressiveness of emotions, less involvement in care and more target-oriented interactions with the palliative care team., Conclusions: Gender has a relevant impact on roles, coping, communication and support as well as psychosocial needs of FCs of patients receiving palliative care. These gender-related aspects have to be taken into account during palliative care including care for FCs.

Background: Symptom assessment is essential in palliative care, but holds challenges concerning implementation and relevance. This study aims to evaluate patients' main symptoms and problems at admission to a specialist inpatient palliative care (SIPC) ward using physician proxy- and patient self-assessment, and aims to identify their prognostic impact as well as the agreement between both assessments., Methods: Within 12 h after admission, palliative care specialists completed the Symptom and Problem Checklist of the German Hospice and Palliative Care Evaluation (HOPE-SP-CL). Patients either used the new version of the minimal documentation system for patients in palliative care (MIDOS) or the Integrated Palliative Care Outcome Scale (IPOS) plus the Distress Thermometer (DT)., Results: Between 01.01.2016-30.09.2018, 1206 patients were included (HOPE-SP-CL 98%; MIDOS 21%, IPOS 34%, DT 27%) whereof 59% died on the ward. Proxy-assessment showed a mean HOPE-SP-CL Total Score of 24.6 ± 5.9 of 45. Most frequent symptoms/problems of at least moderate intensity were weakness (95%), needs of assistance with activities of daily living (88%), overburdening of family caregivers (83%), and tiredness (75%). Factor analysis identified four symptom clusters (SCs): (1) Deteriorated Physical Condition/Decompensation of Home Care, (2) Emotional Problems, (3) Gastrointestinal Symptoms and (4) Other Symptoms. Self-assessment showed a mean MIDOS Total Score of 11.3 ± 5.3 of 30, a mean IPOS Total Score of 32.0 ± 9.0 of 68, and a mean distress of 6.6 ± 2.5 of 10. Agreement of self- and proxy-assessment was moderate for pain (ƙ = 0.438) and dyspnea (ƙ = 0.503), fair for other physical (ƙ = 0.297 to 0.394) and poor for psychological symptoms (ƙ = 0.101 to 0.202). Multivariate regression analyses for single symptoms and SCs revealed that predictors for dying on the SIPC ward included impaired ECOG performance status, moderate/severe dyspnea, appetite loss, tiredness, disorientation/confusion, and the SC Deteriorated Physical Condition/Decompensation of Home Care., Conclusion: Admissions to a SIPC ward are mainly caused by problems impairing mobility and autonomy. Results demonstrate that implementation of self- and reliability of proxy- and self-assessment is challenging, especially concerning non-physical symptoms/problems. We identified, specific symptoms and problems that might provide information needed for treatment discussions regarding the medical prognosis.

Background: Inpatient palliative care consultation (IPCC) teams have been established to improve care for patients with specialist palliative care (PC) needs throughout all hospital departments. The objective is to explore physicians' perceptions on the impact of IPCC, its triggers, challenges and limits, and their suggestions for future service improvements., Methods: A Qualitative study drawing on semi-structured interviews with 10 PC specialists of an IPCC team and nine IPCC requesting physicians from oncology and non-oncological departments of a university hospital. Analysis was performed using qualitative content analysis., Results: PC specialists and IPCC requesting physicians likewise considered organization of further care and symptom-burden as main reasons for IPCC requests. The main impact however was identified from both as improvement of patients' (and their caregivers') coping strategies and relief of the treating team. Mostly, PC specialists emphasized a reduction of symptom burden, and improvement of further care. Challenges in implementing IPCC were lack of time for both. PC specialists addressed requesting physicians' skepticism towards PC. Barriers for realization of IPCC included structural aspects for both: limited time, staff capacities and setting. PC specialists saw problems in implementing recommendations like disagreement towards their suggestions. All interviewees considered education in PC a sensible approach for improvement., Conclusions: IPCC show various positive effects in supporting physicians and patients, but are also limited due to structural problems, lack of knowledge, insecurity, and skepticism by the requesting physicians. To overcome some of these challenges implementation of PC education programs for all physicians would be beneficial.