What Palliative Patients and their Carers Need at Home and what a Primary Health Care Team can Offer - First Pilot Study in Slovenia.

Spending one's last days and dying at home is a common wish of people with a life-limiting illness. Home-based palliative care is essentially organised at the primary level to meet the needs of palliative patients and their carers. The aim of this study was to identify the characteristics of home-based palliative care, focusing on those who identify palliative patients, what their needs are and how this affects their length of life and site of death. This retrospective cohort study analysed routinely collected notes of patients enrolled in home-based palliative care between 2015 and 2021. Palliative care was provided by a primary health care team in a predominantly rural area. This study included 107 palliative patients, aged 71±11.4 years, 94% of whom had cancer. They were enrolled in palliative care by their primary care team or by hospital staff. The enrolment by hospital staff (3%) resulted in significantly shorter survival (p=0.008). Patients lived an average of 66 days, and 65% of patients died at home. Home-based palliative care was found to respond to both basic and complex palliative medical needs, but was weaker in addressing socio-economic, psychological or spiritual issues. This exemplary primary-level palliative team provided home-based palliative care that has improved over the years in terms of all the observed quality indicators: early enrolment, the proportion of patients dying at home and the ability to address needs. Specialised mobile palliative teams, hospitals and other palliative care settings complement home-based palliative care. Neozdravljivo bolni ljudje si pogosto želijo preživeti zadnje obdobje svojega življenja doma in doma tudi umreti. Paliativno oskrbo na domu pretežno pokriva osnovno zdravstvo, ki se odziva na potrebe paliativnih bolnikov in njihovih oskrbovalcev. Namen raziskave je bil ugotoviti značilnosti paliativne oskrbe na domu s poudarkom na tem, kdo prepozna paliativne bolnike, kakšne so njihove potrebe in kako to vpliva na njihovo dolžino življenja in kraj smrti. V retrospektivni kohortni študiji smo analizirali rutinsko zbrane zapise o oskrbi paliativnih pacientov, vključenih v paliativno oskrbo na domu v letih 2015–2021. Paliativno oskrbo je zagotavljal tim osnovnega zdravstva v pretežno ruralnem okolju. V raziskavo je bilo vključenih 107 paliativnih bolnikov, starih 71 ± 11,4 let, od katerih je imelo 94 % raka. V paliativno oskrbo jih je vključil primarni zdravstveni tim (tj. družinski zdravnik, patronažna medicinska sestra, dežurna/nujna služba) ali bolnišnično osebje. Pri bolnikih, ki jih je v paliativno oskrbo vključilo bolnišnično osebje, je bilo statistično značilno krajše preživetje (p = 0,008). Bolniki so v povprečju živeli 66 dni in 65 % bolnikov je umrlo doma. Paliativna oskrba na domu zagotavlja oskrbo večine osnovnih in kompleksih zdravstvenih potreb paliativnih bolnikov, a je šibkejša pri obravnavi socio-ekonomskih, psiholoških ali duhovnih potreb. V opazovanih letih se je kakovost paliativne oskrbe na domu v tem primeru dobre prakse izboljšala v vseh preučevanih kazalnikih: pri zgodnjem vključevanju, deležu pacientov, ki umirajo doma, ter odzivu na potrebe paliativnih bolnikov in oskrbovalcev. Specializirani mobilni paliativni timi, bolnišnična in druge oblike institucionalne paliativne oskrbe dopolnjujejo paliativno oskrbo na domu.

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© 2023 National Institute of Public Health, Slovenia, published by Sciendo.

Déclaration de conflit d'intérêts

Conflicts of interest The authors declare that no conflicts of interest exist.