Palliative care phenotypes among critically ill patients and family members: intensive care unit prospective cohort study

Abstract

ObjectiveBecause the heterogeneity of patients in intensive care units (ICUs) and family members represents a challenge to palliative care delivery, we aimed to determine if distinct phenotypes of palliative care needs exist.MethodsProspective cohort study conducted among family members of adult patients undergoing mechanical ventilation in six medical and surgical ICUs. The primary outcome was palliative care need measured by the Needs at the End-of-Life Screening Tool (NEST, range from 0 (no need) to 130 (highest need)) completed 3 days after ICU admission. We also assessed quality of communication, clinician–family relationship and patient centredness of care. Latent class analysis of the NEST’s 13 items was used to identify groups with similar patterns of serious palliative care needs.ResultsAmong 257 family members, latent class analysis yielded a four-class model including complex communication needs (n=26, 10%; median NEST score 68.0), family spiritual and cultural needs (n=21, 8%; 40.0) and patient and family stress needs (n=43, 31%; 31.0), as well as a fourth group with fewer serious needs (n=167, 65%; 14.0). Interclass differences existed in quality of communication (median range 4.0–10.0, p<0.001), favourable clinician–family relationship (range 34.6%–98.2%, p<0.001) and both the patient centredness of care Eliciting Concerns (median range 4.0–5.0, p<0.001) and Decision-Making (median range 2.3–4.5, p<0.001) scales.ConclusionsFour novel phenotypes of palliative care need were identified among ICU family members with distinct differences in the severity of needs and perceived quality of the clinician–family interaction. Knowledge of need class may help to inform the development of more person-centred models of ICU-based palliative care.

Mobile Application–Based Communication Facilitation Platform for Family Members of Critically Ill Patients

“…Although the NEST minimal clinically important difference is unclear, such a targeted difference is significantly associated with clinically important changes in depression and anxiety symptoms, goal concordance, and quality of communication as well as an item threshold value in our recent latent class analyses of serious need. [29][30][31][32] Hierarchical linear models were used to estimate the treatment effect on changes in NEST scores, as well as to account for the association of both family members' repeated measurements over time and between family members with the same clinician (ie, clustering). Models were fit in SAS PROC MIXED software version 9.4 (SAS Institute), assuming a compound symmetry covariance structure for the repeated measures and a random variance component for the clustering (eAppendix 7 in Supplement 2).…”

“…In contrast, outcomes such as palliative care needs that are more temporally proximate to intervention and assess several domains of palliative care may better reflect intervention mechanisms and the time frame of greatest clinical importance to the patient, family member, and clinician . In addition to its responsiveness to change, the NEST can also serve as a screening tool given the poor predictive value of clinical characteristics, as well as a means by which to identify patients and family members with complex communication needs who may potentially be best served by specialists or to direct nonphysician multidisciplinary practitioners to those with specific needs aligned with their expertise …”

“…To detect differences of 5.4 points to 6.1 points overall and 7.7 points to 8.0 points for Black or White patients separately, we needed to randomize 40 physicians (20 per group) with a cluster size of 4 (2 Black patients and 2 White patients) for a total sample size of 160 families. Although the NEST minimal clinically important difference is unclear, such a targeted difference is significantly associated with clinically important changes in depression and anxiety symptoms, goal concordance, and quality of communication as well as an item threshold value in our recent latent class analyses of serious need …”

“…19,28 We previously adapted the NEST for the ICU setting and conducted a series of evaluations supporting its validity and responsiveness among family member proxies. [29][30][31][32] The adapted NEST (13 items; total score range: 0 [no need] to 130 [highest need]) was administered on study days 1, 3, and 7 to assess needs across the 8 core domains of palliative care quality, including physical symptoms, structure and processes of care, perceived social support, psychological and emotional symptoms, spiritual and cultural aspects of care, end-of-life care, and ethical aspects of care (see eAppendix 6 in Supplement 2). 33…”

Learning needs and perceived barriers and facilitators to end-of-life care: a survey of front-line nurses on acute medical wards

“…Additional barriers we identified also align with other studies, including perceptions that the treating teams are self-sufficient and can provide satisfactory palliative care independently, and that patients and families may resist involvement of the palliative care team. 25 Despite palliative care improving outcomes for Open access individuals at the end of life, many patients who could benefit from palliative services (eg, those with complex communication needs, spiritual and cultural needs, and high stress needs 26 ), do not receive timely consultations. [27][28][29] A survey of 133 healthcare professionals from a private hospital in Australia reported that nearly 40% of dying patients received palliative care 'sometimes, rarely or never'.…”