Structural data of participating NHs; cross-sectional and retrospective survey; source: NH records | ||||||
 |  | Parameter | No. | item example(s) | ||
 |  | residents | 55 | no. of residents in past 12 months /on day of data collection, respite vs longterm care) | ||
 |  | nursing staff | no. of registered/assistent/hired nurses; no. of full equivalents; no. of palliative care experts; total sick leave days per year | |||
 |  | palliative care | palliative care concept in place; active collaboration with palliative care services | |||
 |  | hospice care | collaboration with hospice care services | |||
 |  | ethics consultations | established; number in past 12 months | |||
 |  | general practioner | no. of general practioners | |||
 |  | co-payment | defined private co-payment for residents | |||
Data Collection 1 (DC-1): Anonymous data of all residents, aggregated on nursing home level; collected at baseline (t0), end of intervention run-in period (t1) and at the end of observation period (t2) | ||||||
DC-1a: Clinical and ACP data of participating NHs instrument; cross-sectional and retrospective survey; sources: NH records | ||||||
Domain | Subdomain(s) | Outcome | R (D) | R (O) | No. | item example(s) |
Health Care Outcomes | care utilisation constructs | hospitalisation | 1 | 17 | 2 | rates; total hospital days |
cardiopulmonary resucitation | 11 | 38 | 2 | attempted; discharged alive | ||
feeding tube | 11 | 38 | 2 | in place; in use | ||
deaths | 5 | 21 | 2 | number; place of death | ||
Action Outcomes | communication and documentation/ patient and surrogate | surrogate decision maker: decision and documentation | 1;2 | 2;3 | 2 | documented; type (guardian vs. DPOA) |
advance directive (by proxy) | 6;7 | 9;10 | 4 | documented; last update; state-ment regarding hospitalisation; signature of resident | ||
advance order for emergency treatment | 4 | 7 | 3 | documented; last update; signature of resident | ||
Communication and documentation/ values and preferen-ces constructs | surrogate agrees to take on role | 3 | 12 | 1 | surrogate's signature documented | |
medical records contain ad-vance care plan | 7 | 10 | 2 | Adance directive (AD) or AD by proxy in medical record | ||
medical record contains physician treatment orders | 4 | 7 | 1 | Any POLST equivalent according to given definition | ||
Data Collection 2 (DC-2): Individual data of residents who have given informed consent; collected at baseline and during observation period (t1-t2). | ||||||
DC-2a: Cross-sectional and retrospective survey; sources: NH records, GP records, hospital records, EMS records | ||||||
Domain | Subdomain(s) | Outcome | R (D) | R (O) | No. | item example(s) |
n.a. | sociodemographic data; after death data | 14; 8Â | Gender, Y/COB, migration, professional degree, move-in date, days since moving in at start of survey; deceased, date of death, insurance, marital status, religion, care level | |||
Health Care Outcomes | care utilisation constructs | hospitalisation | 1 | 17 | 3 | number; total hospital days |
visits of hospital outpatient services | Â | Â | 1 | number | ||
cardiopulmomary resucitation | Â | Â | 2 | attempted | ||
intensive care unit | 4 | 21 | 1 | days | ||
artificial ventilation | Â | Â | 1 | hours | ||
feeding tube (PEG) | Â | Â | 2 | insertion; in place | ||
deaths | 5 | 21 | 2 | number; place of death | ||
EMS transports | Â | Â | 1 | number; kind of transport; emergency physician | ||
general practioner visits (NH) | Â | Â | 1 | number | ||
referrals to specialists | Â | Â | 1 | number (by specialty) | ||
medication | Â | Â | 5 | antibiotics/opioids | ||
palliative care services delivered | 9 | 29 | 2 | no. (general/specialised) | ||
health status and mental health | quality of life (resident capable of self-rating) | 4 | 53 | 24 | WHO-QoL-old German Version (Winkler et al. 2016) | |
quality of life (resident uncapable of self-rating) | n.a. | n.a. | 37 | Qualidem (Hüsken et al. 2016) | ||
Domain | Subdomain(s) | Outcome | R (D) | R (O) | No. | item example(s) |
Action Outcomes | communication & documentation/ surrogate | surrogate decision maker | 1;2 | 2;3 | 2 | documented; type (guardian vs. DPOA) |
communication & documentation/ values&preferences | advance directive | 6;7 | 9;10 | 15 | date; form; publisher; content/preferences if stated for specific given scenarios | |
advance order for emergency treatment | 4 | 7 | 15 | date; form; publisher; content/preferences if stated for specific given scenarios | ||
advance directive by proxy | 6;7 | 9;10 | 9 | documented; formal details; content/preferences if stated for specific given scenarios | ||
surrogate agrees to take on role | 3 | 12 | 1 | surrogate's signature documented | ||
discuss values and care preferences with clinicians | 5 | 8 | 1 | elicited in chart review/ in interviews after potentially life-threatening events | ||
discuss values and care preferences with surrogate and/or family&friends | 9 | 35 | 1 | surrogate's and/or family's /friends' signature documented | ||
medical records contain ad-vance care plan | 7 | 10 | 2 | Adance directive (AD) or AD by proxy in medical record | ||
medical record contains physician treatment orders | 4 | 7 | 1 | Any POLST equivalent according to given definition | ||
DC-2b: 3CP; retrospective evaluation of available sources, max. 3 months after potentially life-threatening events identified from NH charts; sources: NH records, interviews with resident/surrogate, family and reference nurse. | ||||||
Domain | Subdomain(s) | Outcome | R (D) | R (O) | No. | item example(s) |
Quality of Care Outcomes | care consistent with goal constructs/ Care received is consistent w. goals | care consistency with care preferences re. treatment decisions in the face of potentially life-threatening events in the last 3mths | 1 | 1 | 9 | 1. Preference known? IF YES:2. Preferene well-informed (i.e., 4 SDM criteria fulfilled)? 3. Preference honored? |
DC-2c: In case of deceased residents, interviews with bereaved family members and reference nurses | ||||||
Domain | Subdomain(s) | Outcome | R (D) | R (O) | No. | item example(s) |
Quality of Care Outcomes | care consistent with goal constructs/Care received is consistent with goals | Care consistency with care preferences | 1 | 1 | > 100Â | Selected domains of ADBI (Teno et al. 2001): Inform and promote shared decision making (problem score #2), Encourage advance care planning (problem score #3) and Overall Rating Scale for patient focused, family centered care |
satisfaction with care and communication | Surrogate's/family's ratings of quality of death and dying | 1 | 15 | |||
Health Care Outcomes | depression | depression on the side of bereaved family member | 1 | 31 | 22 | IES-R (Maercker et al. 1998) |
(psychological) trauma on the side of bereaved family members | (1) | (31) | 14 | HADS-d (Herrmann-Lingen et al. 2018) | ||
Data Collection 3: Health care expenditures | ||||||
Domain | Subdomain(s) | Outcome | R (D) | R (O) | No. | item example(s) |
Health Care Outcomes | overall health care expenditures | 6 | 25 | Â | complex calculation employing parameters from above, and separate assessments of time resources by skilled staff spent to promote the intervention |