Is palliative care a utopia for older patients with organ failure, dementia or frailty? A qualitative study through the prism of emergency department admission.

BACKGROUND: Nearly three out of four older people will use the emergency department (ED) during their last year of life. However, most of them do not benefit from palliative care. Providing palliative care is a real challenge for ED clinicians who are trained in acute, life-saving medicine. Our aim is to understand the ED's role in providing palliative care for this population. METHODS: We designed a qualitative study based on 1) interviews - conducted with older patients (≥ 75 years) with a palliative profile and their informal caregivers - and 2) focus groups - conducted with ED and primary care nurses and physicians. Palliative profiles were defined by the Supportive and Palliative Indicators tool (SPICT). Qualitative data was collected in French-speaking Belgium between July 2021 and July 2022. We used a constant inductive and comparative analysis. RESULTS: Five older patients with a palliative profile, four informal caregivers, 55 primary and ED caregivers participated in this study. A priori, the participants did not perceive any role for the ED in palliative care. In fact, there is widespread discomfort with caring for older patients and providing palliative care. This is explained by multiple areas of tensions. Palliative care is an approach fraught with pitfalls, i.e.: knowledge and know-how gaps, their implementation depends on patients'(co)morbidity profile and professional values, experiences and type of practice. In ED, there are constant tensions between emergency and palliative care requirements, i.e.: performance, clockwork and needs for standardised procedures versus relational care, time and diversity of palliative care projects. However, even though the ED's role in palliative care is not recognised at first sight, we highlighted four roles assumed by ED caregivers: 1) Investigator, 2) Objectifier, 3) Palliative care provider, and 4) Decision-maker on the intensity of care. A common perception among participants was that ED caregivers can assist in the early identification of patients with a palliative profile. CONCLUSIONS: Currently, there is widespread discomfort regarding ED caregivers caring for older patients and providing palliative care. Nonetheless, ED caregivers play four roles in palliative care for older patients. In the future, ED caregivers might also perform the role of early identifier.

SPICT as a predictive tool for risk of 1-year health degradation and death in older patients admitted to the emergency department: a bicentric cohort study in Belgium.

BACKGROUND: Older patients are increasingly showing multi-comorbidities, including advanced chronic diseases. When admitted to the emergency department (ED), the decision to pursue life-prolonging treatments or to initiate a palliative care approach is a challenge for clinicians. We test for the first time the diagnostic accuracy of the Supportive and Palliative Care Indicators Tool (SPICT) in the ED to identify older patients at risk of deteriorating and dying, and timely address palliative care needs. METHODS: We conducted a prospective bicentric cohort study on 352 older patients (≥ 75 years) admitted to two EDs in Belgium between December 2019 and March 2020 and between August and November 2020. SPICT (French version, 2019) variables were collected during the patients' admission to the ED, along with socio-demographic, medical and functional data. The palliative profile was defined as a positive SPICT assessment. Survival, symptoms and health degradation (≥ 1 point in ADL Katz score or institutionalisation and death) were followed at 12 months by phone. Main accuracy measures were sensitivity, specificity and likelihood ratios (LR) as well as cox regression, survival analysis using the Kaplan Meier method, and ordinal regression. RESULTS: Out of 352 patients included in the study (mean age 83 ± 5.5 years, 43% male), 167 patients (47%) had a positive SPICT profile. At one year follow up, SPICT positive patients presented significantly more health degradation (72%) compared with SPICT negative patients (35%, p < 0.001). SPICT positivity was correlated with 1-year health degradation (OR 4.9; p < 0.001). The sensitivity and specificity of SPICT to predict health degradation were 0.65 (95%CI, 0.57-0.73) and 0.72 (95%CI, 0.64-0.80) respectively, with a negative LR of 0.48 (95%CI, 0.38-0.60) and a positive LR of 2.37 (1.78-3.16). The survival time was shorter in SPICT positive patients than in SPICT negative ones (p < 0.001), the former having a higher 1-year mortality rate (HR = 4.21; p < 0.001). CONCLUSIONS: SPICT successfully identifies older patients at high risk of health degradation and death. It can support emergency clinicians to identify older patients with a palliative profile and subsequently initiate a palliative care approach with a discussion on goals of care.

Crushed by the Belgian system: Lived experiences of forensic care trajectories by persons labelled as not criminally responsible.

BACKGROUND: Care trajectories of Persons labelled Not Criminally Responsible (PNCR) are often characterized by multiple transitions from one (forensic) mental health service to another and by long periods of admission. So far, little research has been conducted on forensic care trajectories, in particular on how PNCR perceive the trajectories they are subjected to. METHOD: Data were obtained via semi-structured interviews (N = 23) with PNCR in various (forensic) mental health services in Belgium. A maximum variation sampling strategy was applied to recruit a heterogeneous group of PNCR and inductive thematic analysis adopted to analyse the data. RESULTS: PNCR's experiences about care trajectories in Belgium are marked by an absent voice and passive position in the decision-making process in addition to a lack of support during transitions. Barriers for admission in (forensic) mental health services and the indeterminate duration of care trajectories contribute to overall negative lived experiences. CONCLUSION: Although some findings are interchangeable with general mental health care, PNCR's care trajectories differ by their undetermined nature, barriers for accessing care and power dynamics in compulsory forensic care. As concepts from prison sociology, such as tightness, power holders and pain of indeterminacy, seem to be equally relevant for the situation of PNCR, the balance between a criminal justice and mental health approach in forensic mental health care is questioned.

Personal continuity versus specialisation of care approaches in mental healthcare: experiences of patients and clinicians-results of the qualitative study in five European countries.

BACKGROUND: The current debate on organisation of the mental health care raises a question whether to prioritise specialisation of clinical teams or personal continuity of care. The article explores the experiences of patients and clinicians regarding specialisation (SC) and personal continuity (PCC) of care in five European countries. METHODS: Data were obtained via in-depth, semi-structured interviews with patients (N = 188) suffering from mental disorders (F20-49) and with clinicians (N = 63). A maximum variation sampling was applied to assume representation of patients and of clinicians with different characteristics. The qualitative data from each country were transcribed verbatim, coded and analysed through a thematic analysis method. RESULTS: Many positive experiences of patients and clinicians with the PCC approach relate to the high quality of therapeutic relationship and the smooth transition between hospital and community care. Many positive experiences of patients and clinicians with the SC approach relate to concepts of autonomy and choice and the higher adequacy of diagnosis and treatment. Clinicians stressed system aspects of providing mental health care: more effective management structure and higher professionalization of care within SC approach and the lower risk of disengagement from treatment and reduced need for coercion, restraint, forced medication or involuntary admission within PCC. CONCLUSIONS: Neither the PCC, nor the SC approach meets the needs and expectations of all patients (and clinicians). Therefore, future reforms of mental health services should offer a free choice of either approach, considering that there is no evidence of differences in patient outcomes between PCC and SC approaches.