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

TY - JOUR

T1 - Specialist palliative care until the very end of life - reports of family caregivers and the multiprofessional team

AU - Ullrich, Anneke

AU - Goldbach, Sven

AU - Hollburg, Wiebke

AU - Wagener, Bettina

AU - Rommel, Annette

AU - Müller, Marten

AU - Kirsch, Denise

AU - Kopplin-Foertsch, Katrin

AU - Schulz, Holger

AU - Bokemeyer, Carsten

AU - Oechsle, Karin

N1 - © 2023. BioMed Central Ltd., part of Springer Nature.

PY - 2023/10/10

Y1 - 2023/10/10

N2 - 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.

AB - 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.

U2 - 10.1186/s12904-023-01266-6

DO - 10.1186/s12904-023-01266-6

M3 - SCORING: Journal article

C2 - 37814271

VL - 22

JO - BMC PALLIAT CARE

JF - BMC PALLIAT CARE

SN - 1472-684X

IS - 1

M1 - 153

ER -