Enhancing Palliative Care in ICU

The primary endpoint is the number of days the patient spent in each Intensive Care Unit (ICU) of the index hospital during the first hospitalization.

For example, if the patient was transferred from the first ICU participating in the EPIC study to another, second ICU within the same hospital, or if the patient was transferred back from a ward to the first ICU, the duration of the secondary ICU is included in the calculation of the primary endpoint.

Hospital cost and billing data, data on medical resource consumption combined with data on costs per unit of consumption at hospital level and from external sources, data on intervention costs including staff time for palliative care and related activities, hospital data or national data on salaries of individual professional groups.

Hospital data on salaries per occupational group

The readmission rate of patients transferred out of the Intensive care unit

To evaluate the performance of total maximum sequential organ failure assessment (SOFA) score and a derived measure, delta SOFA (total maximum SOFA score minus admission total SOFA) as a descriptor of multiple organ dysfunction/failure in intensive care.

Presence of palliative care assessment performed during study period. The answer to the question: Has the palliative care assessment taken place? Yes/No

Presence of refractory symptoms I is measured by physical symptoms.

Presence of refractory symptoms II is measured by distress of the patient.

Presence of refractory symptoms III is measured by distress of the family.

Presence of refractory symptoms IV is measured by social problems of the patient.

Delirium is measured with validated delirium scores.

Treatment limitation includes limits on the frequency of treatment, number of visits, days of coverage, or other similar limits on the scope or duration of treatment.

Length of hospital stay is measured from ICU admission to discharge from hospital in days.

Where the patient is discharged to.

Where the patient is discharged to.

Presence of specialized palliative care expert consultation. Answer to the question: Was a specialized palliative care expert consulted? Yes/No Duration of measurement: Until hospital discharge

Intensive care unit, inhouse, until 30 days and until 3 months

The MacArthur Scale of Subjective Social Status (MacArthur SSS Scale) is a single-item measure that assesses a person's perceived rank relative to others in their group: To score this measure, researchers simply note the number of the rung (1-10) on which the respondent placed their "X."

Place of stay after hospitalization is measured in questionnaire.

Home care after hospitalization is measured in days.

To measure psychological distress the German version of the National Comprehensive Cancer Network Distress Thermometer is used. The scale ranges from 0 (no distress) to 10 (extreme distress) with a cutoff score of 5, indicating a clinically significant level of distress.

Facilitators and barriers to high quality palliative care from the perspective of patients.

Facilitators and barriers to high quality palliative care from the perspective of relatives.

Symptom management I by intensive care staff from the patient's perspective is measured with a questionnaire.

Symptom management II by intensive care staff from the relative's perspective is measured with a questionnaire.

Treatment evaluation I is measured from patients' perspective with a 5-point Likert scale (The choices range from Strongly Agree to Strongly Disagree).

Treatment evaluation II is measured from the relatives' (proxy's) perspective with a 5-point Likert scale (The choices range from Strongly Agree to Strongly Disagree).

Evaluation of the provider's question about goals for treatment I from the patients' perspective is measured with a 5-point Likert scale (The choices range from Strongly Agree to Strongly Disagree).

Evaluation of the provider's question about goals for treatment II from the relatives' perspective is measured with a 5-point Likert scale (The choices range from Strongly Agree to Strongly Disagree).

Satisfaction with regard to communication I from the patients' perspective is measured with a 5-point Likert scale (The choices range from Strongly Agree to Strongly Disagree).

Satisfaction with regard to communication II from the relatives' perspective is measured with a 5-point Likert scale (The choices range from Strongly Agree to Strongly Disagree).

Evaluation of the quality of information regarding the treatment from the patients' perspective is measured with a 5-point Likert scale (The choices range from Strongly Agree to Strongly Disagree).

Rating of the quality of information regarding the treatment II from the relatives' perspective is measured with a 5-point Likert scale (The choices range from Strongly Agree to Strongly Disagree).

Suitability of care from the patient's perspective is measured with a 5-point Likert scale (The choices range from Strongly Agree to Strongly Disagree).

Outpatient resource utilization is measured by the number of outpatient visits.

Utilization of medical resources I is measured in days of mechanical ventilation.

Utilization of medical resources II is measured by Extracorporeal membrane oxygenation Yes/No.

Utilization of medical resources III is measured by dialysis Yes/No.

Utilization of medical resources IV is measured by other organ replacement therapies. Yes/No.

Medical utilization after discharge from hospital I is measured by number and days of re-hospitalizations in days.

Medical utilization after discharge from hospital II is measured by days in care institutions in days.

Medical utilization after discharge from hospital III is measured by outpatient healthcare encounters in days.

Medical utilization after discharge from hospital IV is measured by use of outpatient nursing services in days.

Medical utilization after discharge from hospital V is measured by specialized outpatient palliative care (SAPV) in days.

The Patient Health Questionnaire-4 (PHQ-4) I measures anxiety and depression in patients. The PHQ-4 is a four questionnaire answered on a four point Likert-type scale. A score of 3 or more on the depression/anxiety subscale is positive.

The Patient Health Questionnaire-4 (PHQ-4) II measures anxiety and depression in relatives. The PHQ-4 is a four questionnaire answered on a four point Likert-type scale. A score of 3 or more on the depression/anxiety subscale is positive.

Health related quality of life I of the patient is measured with the 5-level EQ-5D version (EQ-5D-5L) from the EuroQol Group.

Question about the opinion of relatives on the unnecessary prolongation of life is measured by bipolar Likert scale.

Question about opinion of relatives on discomfort during the final hours before death is measured by bipolar Likert scale.

Question about opinion of relatives on loneliness during dying process is measured by bipolar Likert scale.

Patient and family friendliness of intensive care unit care I assessed by patients, measured with Likert scale/NRS 0-10).

Patient and family friendliness of intensive care unit care II assessed by relatives, measured by by Likert scale (too little, just right, too much)/NRS (0-10).

Informal care by relatives I is measured by time spent with the patient.

Informal care by relatives II is measured by impact on relative's income.

Informal care by relatives III is measured by giving up relative´s professional activity.

Informal care by relatives IV is measured by reducing relative's professional activity.

Twelve questions from the BAT-12 per employee based on 5 questions is measured with an electronic questionnaire once per intervention and once per control period.

Perception of inappropriate therapy per employee based on 5 questions to employees is measured with an electronic questionnaire once per intervention and once per control period.

Moral distress per employee is measured with numeric rating scale once per intervention and once per control period.

Questions on the current implementation of the end-of-life practice based on 12 questions that are still being developed is measured with an electronic questionnaire once per intervention and once per control period.

Ethical decision-making climate in the intensive care unit per employee is measured with an electronic questionnaire once per intervention and once per control period.

Existence of Standard Operating Procedures per employee is measured with 4 questions with an electronic questionnaire once per intervention and once per control period.

Questions about using the ABCDEF bundle is measured with 11 questions with an electronic questionnaire once per intervention and once per control period.

Questions about supporting measures is measured with 4 questions with an electronic questionnaire once per intervention and once per control period.

Perception of palliative care and law is measured with 4 questions with an electronic questionnaire once per intervention and once per control period.

Question about hurdles to palliative care in the intensive care medicine is measured with 1 question with an electronic questionnaire once per intervention and once per control period.

Question about supporting factors to palliative care in the intensive care medicine is measured with 1 question with an electronic questionnaire once per intervention and once per control period.

Comments can be made via free text in an electronic questionnaire once per intervention and once per control period.

Demographic data of the patient (age, gender, main diagnosis and reasons for intensive care, insurance status, religion yes/no, highest level of education, employment status, existence of living will, patient power of attorney, chronic conditions) are measured with a questionnaire.

Demographic data of the relative (age, gender, relationship to the patient, representative/guardian, religion yes/no) are measured with a questionnaire.

Employee demographics (age group, gender, profession, years of professional experience, years and experience in palliative care and/or ethical training, type of intensive care unit) are measured with an electronic questionnaire once per intervention and once per control period.