Table 1 Potential predictors of the provision of spiritual end-of-life care through previous work, and definitions

(1) Quality of care

Long-term care facility type/physician presence

Dutch and US physicians who are more present are more certain of family preferences [18]. Further, better quality of end-of-life care was reported in Dutch nursing homes compared to residential homes [19].

Nursing vs. residential home

Definition: Dutch nursing homes have elderly care physicians on the staff, and outreach to units for dementia in residential homes of the same organization with no continuous physician presence.

Facility

Time frame: Unchanged throughout data collection; for residents who moved: refers to location after move.

Perspective: Coordinating physician and if missing, assessed through the facility’s website.

Missing data: No missing values.

Urbanization level

Better overall quality of care was provided in less urbanized areas according to some reports on nursing home care in the Netherlands (references in Dutch provided elsewhere [19]).

Located in town vs. large city

Definition: Facility located in small city, town, village, or rural area versus in one of the four largest cities, all in the western part of the Netherlands.

It should be noted that secularization may be prominent in urbanized areas, which suggests it might also relate to to spiritual caregiving in other ways.

Facility

Time frame: Unchanged throughout data collection; for residents who moved: refers to location after move.

Missing data: No missing values.

Staffing

Quality of care was lower with nursing staff shortage and higher turnover [20–23]

Enough nursing staff

Definition: Sufficiency of nursing staff as perceived by the coordinating physician

Facility

Time frame: Conclusion of data collection.

Perspective: The coordinating physician.

Response options: More than enough, just enough (combined), versus not enough.

Missing data: Loss to follow up- for those who moved to another facility (6 cases) was coded as missing.

Evaluation of quality of care - overall

An association of spiritual caregiving with family satisfaction with end-of-life care has been reported in a US study [9].

Satisfaction with care

Definition: Perception or satisfaction of care measured with the End-of-Life in Dementia-Satisfaction With Care (EOLD-SWC) scale [24]. It represents quality of care as perceived by families [25].

Resident

Time frame: We used the baseline assessment^† which referred to the first 8 weeks after admission. The EOLD-SWC has been used for timeframes other than the last period before death in other prospective work as well [26].

Perspective: Family.

Response options: 10 4-point items are summed and total scores range 10–40, with higher scores representing better quality of care.

Missing data: Missing values (40) include non-random missing for those who died before the baseline assessment.

Evaluation of quality of care – communication specifically

Communication with families may be specifically important for the physician to optimally coordinate care, including spiritual care. Further, communication is a major aspect of quality of end-of-life care and families’ evaluation – i.e., satisfaction with end-of-life care including “timeliness of information, counseling” and “interpersonal and communication style” is an important outcome on its own [27].

Satisfaction with communication

Definition: Item: “Are you satisfied with how the communication with the physician(s) is going (discussions on future care, goals of treatment, and current care)?”

Resident

Time frame: Baseline.^†

Perspective: Family.

Response options: We created a 0–3 satisfaction scale with the response options: “satisfied in every respect” (3), “satisfied about the main elements” (2), “neutral” (1), “not satisfied” (0), “did not talk to physician(s) yet, while I would have wanted to (0), did not talk to physician(s) yet and I do not think that is needed yet (1).

Missing data: Missing values (37) include non-random missing for those who died before the baseline assessment.

(2) A more individualised or more person-centered approach of care; religious backgrounds

Philosophy of care related to individualised approach

Individualised person-centered approach: home-like, small-scale living might involve a more individualised approach. The literature on studies performed in the Netherlands reports it possibly relates to better quality of life although unclear how it relates exactly to quality of care [28, 29].

Small-scale living

Definition: Small-scale living arrangement for dementia available.

Facility/resident

Response options: At the facility level (descriptive; patient-level data used for analyses): all of the residents the facility enrolled in the study; some of the residents; no small-scale living for dementia available.

Time frame: Assessed at the conclusion of the study for the period of data collection, and any changes during that period.

Missing data: 1 case.

Religious affiliation

In a US study, religiously-affiliated facilities were comparable to nonaffiliated facilities in providing on-site religious services, but more likely to provide individual counseling by clergy or chaplains [9]. Therefore, a more individualised approach to spiritual caregiving may be assumed. US nursing homes with a religious affiliation were more likely to provide spiritual end-of-life care to their residents [30]. Further, nursing homes with a strong religious affiliation also provided better end-of-life care in a previous Dutch study [31], and more religion-oriented homes might also adhere to a palliative care approach more strongly.

Strong religious affiliation

Definition: Strong, explicit religious affiliation in place versus no affiliation or only historically.

Facility

Timeframe: Unchanged throughout data collection; for residents who moved: refers to location after move.

Perspective: Assessed by coordinating physician in discussions with researcher.

Missing data: No missing values.

Religious backgrounds and concordance care provider - patient

Families and physicians with any specific background may be more attentive to an individual’s spiritual needs. An individualised person-centered approach is indicated by spiritual care more frequently being provided to residents with a specific religious background in particular when the physician does not have a specific background. That is, providing spiritual care when physician and patient have the same spiritual background does not need a special individualised approach, but it is indicative of such approach if spiritual care is being provided despite dissimilar spiritual backgrounds.

Religious background

Definition: Any specific religious background.

Physician, resident

Response options: We combined any specific religious background (“Protestant”, “Catholic”, “Muslim”, “Humanist”, “Jewish”, and “other”) versus “no specific religious background” for physicians (self-report), and families and residents (family report). We also created a variable that compared such background of the physician and the resident.

Time frame: Residents and families: baseline assessment.^† For families, we used the religion of the family who completed the baseline assessment. Physician’s religious background was assessed midway study.

Missing data: 21 physician responses, 12 for residents, and 13 for families. Resident-physician combined: 32 missing values.

Importance of faith or spirituality in life and concordance care provider - patient

An individualised person-centered approach is indicated by spiritual care more frequently being provided to residents for whom faith or spirituality was important in life, as found in a US study [30], and in particular when the physician does not find it important for him- or herself.

Importance of faith or spirituality

Definition: Item: “How important is (resident: was) faith or spirituality in your life (resident: to your family/loved one)?”

Physician, resident

Response options: We tested “very important” versus “somewhat important”, “not at all important”, and “don’t know” because there was not always a stepwise increase for the three hierarchical levels, and the distributions did not always allow for analyzing the full categorical variables with a reference category. We also created a variable that compared the physician’s and the resident’s faith or spirituality being very important.

Time frame: Same as religious background.

Perspective: Physicians (self-report), families and residents (family report).

Missing data: Same as religious background.

Religious activities involvement

An individualised person-centered approach is indicated by spiritual care more frequently being provided to residents who used to attend religious serves more frequently. It parallels the outcome which also refers to formal and visible spiritual care provision, including explicit reference to rituals.

Frequency of attending religious services

Definition: Item: “How often do you attend church or other religious services?”

Physician, resident

Response options: “More than once a week”, “every week”, “two or three times a month”, “once a month or so”, “once or twice a year”, “never”, and, for families only, regarding residents and themselves, “don’t know”. We transformed the responses into a 0–5 scale, recoding don’t know as missing and after confirming there was a stepwise increase in the association with the outcome.

Time frame: Same as religious background.

Perspective: Physicians (self-report), families and residents (family report).

Missing data: 21 physician responses, 13 for residents, and 14 for families.

Quality of family-physician relationship

Assuming that trust is built up when relationships develop favorably, it may indicate a more individualised approach.

Family trust

Definition: Item: “How much trust do you put in that the physician involved in care for your family/loved one tries hard to make the best of it for your family/loved one?

Resident

Response options: We created a 1–5 scale with the response options “a very large amount of trust (5)”, “a great deal (large amount) of trust (4)”, “somewhat trust (3)”, “little trust (2)”, and “very little trust (1)”.

Time frame: Baseline assessment.^†

Perspective: Families.

Missing data: Missing values (37) included non-random missing for those who died before the baseline assessment.

(3) Palliative care

Palliative care explicitly provided at location

A positive spill-over effect of US hospice services on hospitalization rates of nursing home residents who were not on hospice has been noted by Miller et al. [32] who suggested this was possibly through diffusion of palliative care philosophy and practices. Further, a US study found residents of nursing homes with a hospice unit or providing hospice services more likely to have received spiritual end-of-life care [30].

Palliative care unit

Definition: Palliative care unit (not commonly used for dementia patients) available in the facility vs. not available.

Facility

Time frame: At start of data collection, and confirmed unchanged midway and at conclusion of data collection.

Perspective: Coordinating physician.

Missing data: 6 cases due to move to non-participating facilities.

Palliation as the care goal that takes priority

Different care goals may coexist, but palliative care may be compatible with prioritizing comfort and maintaining function [5].

Comfort goal of care

Definition: The care goal that takes priority. A comfort goal combines “palliative” and “symptomatic” with explanation that both are aimed at wellbeing and quality of life with only for a symptomatic additional prolonging of life being undesirable [33], versus “life prolongation”, “maintaining or improving of functioning”, “other”, or “no global care goal assessed yet”. We did not include functioning for a better distribution.

Resident

Time frame: Baseline,^† after the care planning meeting which Dutch law requires within 6 weeks from admission [34, 35].

Perspective: Physician.

Missing data: Missing values (37) included non-random missing for those who died before the baseline assessment.

Anticipating death

Palliative care explicitly refers to dying as a normal process, and the prevention of suffering by means of early identification [15].

Death expected

Definition: Item: “If you think back to one month before your family/loved one died, do you feel like at that time you expected that he/she was going to die?”

Time frame: After-death assessment.^†

Further, quality of end-of-life care may be better when death is expected, with more opportunities to arrange the care the resident needs, and ensure a comfortable death [36].

Resident

Perspective: Family.

Response options: “Yes”, “no”, “don’t know”. For analyses, we combined the last two options.

Missing data: Missing values (31) included non-random missing values for those who died before the baseline assessment.

Recognizing terminality

Recognizing dementia as a terminal disease may be a basis for the provision of palliative care. In the DEOLD study, when families believed dementia was a disease you can die from, the resident had a more comfortable death [34]. It may therefore also indicate better quality of care.

Perception of dementia as a disease you can die from

Definition: Item: “In your opinion, dementia is a disease you can die from”.

Resident

Time frame: Baseline assessment^†

Perspective: Family.

Response options: “Completely disagree”, “partly disagree”, “neither agree, nor disagree”, “partly agree”, “completely agree” and “do not know”. We used a 1–5 agreement scale combining “don’t know” and “neither agree, nor disagree”. [34].

Missing data: Missing values (38) included non-random missing values for those who died before the baseline assessment.

(4) Other factors or unclear expectation with regard to the direction of a possible association

Facility size and type

The literature reports associations with quality of care in opposite directions; references are provided elsewhere (online Annex [17]).

Number of beds

Definition: Number of psychogeriatric (dementia) care beds in the facility.

Residents of small US residential homes/assisted living facilities (< 16 beds) were less likely to receive spiritual end-of-life care [30].

Facility

Timeframe: If changed during data collection, we calculated the mean number of beds over assessments at the start, mid-way and conclusion of the data collection period.

Missing data: No.

Demo-graphics

A US study found no significant association with resident gender or age in unadjusted (univariable) analyses [9]. However, demographics may relate to religiousness.

Gender and age

Definition and perspective: Gender and age of physician (physician report) and of family and resident (family report). We report on the physician involved in end-of-life care, and the family involved at baseline.

Physician, resident

Timeframe: All refer to the age when the resident died.

Missing data: 12 for physicians, 0 for residents, and for families, 2 missing gender and 12 missing age.

Dementia severity

Less severe dementia may be associated with more frequent spiritual care in parallel with less frequent care compared to patients without dementia [8, 9].

Dementia severity

Definition: Bedford Alzheimer Nursing Severity-Scale (BANS-S) score, range 7–28 [37]. Scores of 17 and higher represent severe dementia [38].

Resident

Timeframe: Baseline.^†

Perspective: Physician (this item was completed by the nurse supervised by the physician in 68.9% of cases).

Missing data: 4 missing values.

Closeness of relationship

Individualised approach yet not attributable to professional caregivers. Spouses and children may be more cognizant regarding the resident’s spiritual needs and background compared with other informal caregivers.

Relationship

Definition and response options: Relationship with resident of family involved at baseline: “spouse” combined with “partner;” “child;” and “other” which combined “grandchild”, “sibling”, “niece/nephew”, “legal guardian, and “other”.

Resident

Timeframe: Baseline.^†

Perspective: Family.

Missing data: 12 missing values.