Table 1 Definitions of subcomponent variables of end-of-life practice score and derivation of its weighted/rescaled form
EOL practice variable | Definition |
|---|---|
Routine family meetings | Regular (i.e., on admission and at least twice a week) scheduled conferences of at least one member of an ICU patient’s family and at least one member of the treating team aimed at (a) determining/clarifying the patient’s health status, and comorbidities, (b) patient values, preferences, and goals concerning treatment options; and (c) conveying honest, accurate, and evidence-based information about patient clinical status and current/updated prognosis |
Daily deliberation for appropriate level of care | Routine daily discussions among members of the ICU treating team aimed at confirming that medical/surgical interventions administered to a patient are not disproportionate and/or do not contradict his/her preferences |
EOL discussions during family meetings | Conferences (on admission, and followed up at least as appropriate/feasible) of at least one member of an ICU patient’s family and at least one member of the treating team aimed at determining and/or revising/adjusting EOL treatment goals according to the evolution of the patient’s clinical course and (particularly changes) of prognosis, and “previously clarified” EOL values/preferences. This variable focuses on a specific type of family meetings’ content aimed at achieving consistency between patient wishes and provided EOL care |
Written ICU triggers for limitations | A set of written, pre-specified medical and/or bioethical criteria for limiting LSTs in the ICU. Examples of such criteria may include: family request, presence of a pertinent living will that has to be respected, irreversible condition, un-survivable injury, severe brain injury with poor prognosis (e.g., minimally conscious state), high Sequential Organ Dysfunction Assessment Score plus]poor response to acute illness treatment, multiple organ failure (≥ 3 organs), non-beneficial therapy, and terminal illness |
Written ICU EOL guidelines | Written ICU recommendations (e.g., shared decision-making, or obligation to inform the family about poor patient response to treatment, and/or lack of expected benefit from available and/or ongoing LSTs), with a written expectation to be followed for EOL decision-making and application of EOL decisions |
Written ICU EOL (symptom management) protocols | A written set of ICU recommendations and standards aimed at preventing any kind of patient distress (e.g., pain, dyspnea, delirium) during the application of LST limitation decisions on withholding and/or withdrawing of LSTs); written ICU EOL protocols may be based on recent, pertinent recommendations on how to perform withdrawing of LSTs |
Palliative care consultations | Consultations and/or liaison with specialists from the hospital’s (specifically designated) palliative care service, focused on the treatment of symptoms (e.g., dyspnea, pain, or delirium), rather than the treatment of any underlying disease processes. Psychosocial and spiritual needs may also be attended to in patients who do not require sedation and are able to communicate. Such consultations may take place whenever LST limitation is considered, in the context of communication of available treatment options to the patient/family. An exception to the former requirement pertains to the presence of an intensivist with palliative care expertise in the ICU treating team |
Ethics consultations | Consultations and/or liaison with a specialist from the hospital’s (specifically designated) clinical ethics committee, focused on addressing of any ensuing ethical dilemmas and/or challenges, including disagreements (that cannot otherwise be resolved) between surrogate decision-makers, between the patient/family and the ICU treating team, health care professionals or others |
Communication courses | Lessons focused at developing or improving the capability of (1) expressing oneself clearly, honestly, and accurately (about available treatment options), and also in a way that is readily understood by the patient/family; and (2) providing psychological support, and showing empathy to the patient/family |
Bioethics courses | Lessons focused on improving the knowledge, understanding of the widely accepted four Principles of Bioethics, and/or the capability of effectively addressing ethical dilemmas and challenges of routine clinical practice |
Country EOL guidelines | Written recommendations by national medical societies, or statutory governing bodies, for EOL decision-making and EOL practices (e.g., symptom control and/or procedure for withdrawal of mechanical ventilation) in the ICU |
Country EOL legislation | A set of laws aimed at addressing commonly ensuing ethical issues as part of routine clinical practice (e.g., Should advance directives always be followed? Are withholding or withdrawing of LSTs, or active shortening of the dying process legally allowed?, etc.) |
EOL practice score | The sum of binary (i.e., 0 or 1) grading of the 12 EOL practice variables according to their absence (= 0) or presence (= 1); score range: 0–12 |
Weighted EOL practice score | Sum of products of EOL practice variable grades and GEE coefficients derived from the GEE analysis of the comparison study data (see also “Methods”); sum actual range: − 2.574 to 5.706 |
Weighted EOL practice score rescaled to a 0 to 12 rangea | Weighted/rescaled EOL practice score = [12/(5.706 + 2.574)]*(“actual” weighted EPS + 2.574) |