Background
Methods
Patient interviews
Delphi survey
Data analysis
Results
Patient interviews
N | 11 |
Age | |
M, SD | 71.7 (13.9) |
Min, Max | 51, 89 |
Gender | |
Male (n, %) | 7 (63.6) |
Female (n, %) | 4 (36.4) |
First language | |
German (n, %) | 11 (100.0) |
Educational level | |
Higher education entrance qualification (n, %) | 5 (45.5) |
Higher secondary school (n, %) | 5 (45.5) |
Lower secondary school (n, %) | 1 (9.1) |
Vocational training | |
Professional training (n, %) | 6 (54.5) |
University degree (n, %) | 2 (18.2) |
None (n, %) | 2 (18.2) |
Not specified (n, %) | 1 (9.1) |
Diagnosis | |
Cancer (colon, lung, liver, breast & abdominal, lower jaw, larynx, glioblastoma) (n, %) | 7 (63.6) |
Geriatric multimorbidity (n, %) | 2 (18.2) |
Chronic obstructive pulmonary disease (COPD) (n, %) | 2 (18.2) |
Care Setting | |
Home care (n, %) | 4 (36.4) |
Residential care (n, %) | 2 (18.2) |
Hospice care (n, %) | 3 (27.3) |
In-patient care (n, %) | 2 (18.2) |
Interview Setting | |
At home (n, %) | 4 (36.4) |
Hospice (n, %) | 3 (27.3) |
Residential care facility (n, %) | 2 (18.2) |
Hospital (n, %) | 2 (18.2) |
However, some sub-categories added valuable insight and contributed to the revision of the semi-structured clinical approach draft. Those sub-categories are reported below.Well, you can’t develop a very RIGID guideline, I think. It’ll need to cover a vast spectrum, starting from one point at the bottom and spreading VERY, VERY wide apart at the top. (patient 1)
Interviewer: Would it have been helpful to you, if [the health professional] had addressed [the desire to die]?
To initiate and discuss problems, establishing a trustful health-professional-patient-relationship is a prerequisite, which both sides have to allow for. Unobtrusively signaling an appreciative attitude best frames the setting: conscious eye contact and relational touch can help to establish intimacy, if appropriate:Patient: Yes. I think so. [ … ] I don’t know how other patients feel, but talking about it was very difficult for me. (patient 3)
When arranging for an appropriate environment to talk about desire to die, privacy and the patient’s mental state should be taken into account. Furthermore, taking enough time was unanimously appreciated and considered helpful in signaling special attention.Who among you [health professionals] even gives hugs anymore or takes someone’s arm? [ … ] You all have a hard time with that.Interviewer: This would be something important to you?Patient: Of COURSE. (patient 7)
[The health professional said:] “We can call a pastoral worker for you [ … ] to talk to.” [ … ] I didn’t KNOW what to talk about with a pastoral worker. But he was here for an hour and there WAS a lot to talk about, apparently. (patient 5)
Delphi survey
N | 149 | ||
Age | Mean (Minimum, Maximum) | 49.3 (19, 72) | |
n (%) | |||
Gender | Female | 107 (71.8) | |
Male | 42 (28.2) | ||
Residence | Germany | 132 (88.6) | |
Other countries | 17 (11.4) | ||
Spain | ➢ n = 5 | ||
Canada | ➢ n = 3 | ||
Switzerland, Norway | ➢ n = 2 each | ||
USA, Australia, El Salvador, Sweden, Portugal | ➢ n = 1 each | ||
Expertisea | Nursing | 91 (61.1) | |
Physician | 21 (14.1) | ||
Psychology and psychotherapy | 9 (6.0) | ||
Spiritual care | 11 (7.4) | ||
Ethics counseling | 10 (6.7) | ||
Social work | 1 (0.7) | ||
Relatives | 12 (8.1) | ||
Research and science | 20 (13.4) | ||
Non-practitioners, e.g. moral philosophers | 13 (8.7) | ||
Other | 17 (11.4) | ||
Self-assessment | |||
n (%) | |||
Experience in years | Dealing with desire to die (DD) in clinical practice | < 1 | 3 (2.0) |
1–9 | 58 (38.9) | ||
≥ 10 | 81 (54.4) | ||
missing | 7 (4.7) | ||
Dealing with suicidality in clinical practice | < 1 | 39 (26.2) | |
1–9 | 41 (27.5) | ||
≥ 10 | 63 (42.3) | ||
missing | 6 (4.0) | ||
Studying DD from a theoretical perspective | < 1 | 58 (38.9) | |
1–9 | 61 (40.9) | ||
≥ 10 | 21 (14.1) | ||
missing | 9 (6.0) | ||
Studying suicidality from a theoretical perspective | < 1 | 82 (55.0) | |
1–9 | 39 (26.2) | ||
≥ 10 | 19 (12.8) | ||
missing | 9 (6.0) | ||
Mean (Standard Deviation) | |||
Confidenceb | Dealing with DD | 4.16 (1.00) | |
Dealing with suicidality | 2.92 (1.37) | ||
Knowledgeb | DD | 3.98 (1.07) | |
Suicidality | 2.97 (1.36) |
Suitability and usefulness
Importance of individual domains
Mean (Standard Deviation) | Consensusa | |||||
---|---|---|---|---|---|---|
Round 1b | Round 2c | p | Round 1 | Round 2 | Increase | |
A – Usage Notes | ||||||
1. Usage notesd | – | 4.32 (0.91) [5] | – | – | 92.6% | – |
B – Conversation Aspects | ||||||
2. Actively building the relationship | 4.64 (0.85) | – | – | 92.6% | – | – |
3. Proactively addressing desire to die | 4.01 (0.94) | 4.16 (0.92) | < 0.05 | 74.5% | 83.2% | 8.7% |
4. Closure of discussion | 4.62 (0.74) | – | – | 92.6% | – | – |
5. After discussion | 4.64 (0.65) | – | – | 94.0% | – | – |
C – Classification, Meaning and Functions | ||||||
6. Classification of desire to die | 4.26 (1.0) | 4.37 (0.80) | 0.10 | 85.2% | 90.6% | 5.4% |
7. Background and meanings of desire to die | 4.81 (0.50) | – | – | 97.3% | – | – |
8. Functions of desire to die | 4.31 (1.07) | 4.64 (0.73) | < 0.01 | 83.9% | 95.3% | 11.4% |
D – (Self-)Reflection | ||||||
9. Conscious engagement with own attitudes and emotions | 4.77 (0.53) | – | – | 97.3% | – | – |
10. Self-protection | 4.74 (0.53) | – | – | 96.0% | – | – |
E – Further Recommended Action | ||||||
11. Further recommended action | 4.53 (0.85) | 4.68 (0.56) | 0.07 | 87.9% | 95.3% | 7.4% |
Contents of comments | Implementationa |
---|---|
free text answers across all domains pointed to the need to provide general notes on proper usage of the clinical approach | added a new domain: ➪ ‘usage notes’ |
suggestion on asking whether patients think about terminating life prematurely criticized as being too direct | added a new suggestion: ➪ ‘Explore thoughts related to not wanting to live anymore’ |
clinical approach seen to be at danger of provoking checklist type of interrogation due to bullet point setup | changed interrogative clauses to instructions: ➪ ‘Exists or existedExplore fear of death and dying?’ ➪ ‘Exists or existedExplore thoughts related to terminating life prematurely?’ |
complexity and changeability of desire to die in palliative patients seen to run counter to unambiguous classification | added a new suggestion: ➪ ‘In general, keep in mind: desire to die is complex and prone to change’ |
“manipulate” in the respective function of desire to die seen to be poor choice of words | changed wording: ➪ ‘Attempting to manipulateinfluence family or health professionals’ |
“attracting attention” in the respective function of desire to die seen to be poor choice of words | changed wording: ➪ ‘AttractingDrawing attention to oneself and one’s trouble’ |
“treatment contracts” seen as bad practice, especially when involving handshakes for sealing the contract as it seemed to suggest “clean hands practice” | changed wording, rated old and new version during round 2: ➪ ‘Entering into a treatment contract with handshake in cases of latent suicidality’ (32.9% agreement, M = 3.00, SD = 1.19) ➪ ‘Entering into a treatment contract with handshakeagreement in cases of latent suicidality in order to win time for interventions’ (79.2% agreement, M = 4.17, SD = 0.96) |
suggestion on passive euthanasia seen as poorly worded | changed wording: ➪ Letting die (passive euthanasia) as a legal option (foregoing, restriction or cancellation of life sustaining and life prolonging measures)’ |
selection of therapeutic approaches listed as examples in respective suggestions seen as too narrow | added a new suggestion during round 2: ➪ ‘Offering other (psycho-)therapeutic interventions (e.g. family therapy, psychotherapy, art therapy)’ summed up all related suggestions into one for the finalized clinical approach: ➪ ‘Offering counseling or (psycho-)therapy for individuals or groups’ |