Background
Methods
Search strategy
Selection criteria
Results
Study | Sample | Design | Measures | Findings |
---|---|---|---|---|
Feasibility studies
| ||||
Passik et al., 2004 [23] | US sample; 8 pts with cancer in hospice care | Single group pre-post trial of DT via telemedicine | • ZSDS | DT is feasible by telemedicine/ videoconference. |
• PUBs | ||||
• Single item scale for depression | ||||
Assessments: Baseline & immediate post DT | ||||
Evaluation | ||||
Satisfaction survey | ||||
Chochinov et al., 2005 [17] | Canada and Australia sample | Single group, pre-post trial of DT | Single item screening measures for: | Significant improvement in: suffering (p = .023), depressive symptoms (p = .05). |
• Depression | ||||
100 terminally ill pts in hospital, NH or home | Assessments: Baseline & immediate post DT | • Dignity | ||
• Anxiety | High proportions gave positive evaluation for benefits of DT: 91% reported feeling satisfied/ highly satisfied with DT. | |||
• Suffering | ||||
• Hopefulness | ||||
• Desire for death | ||||
86% reported DT was helpful or very helpful. | ||||
• Suicide | ||||
• Sense of well-being | 81% indicated DT had already helped, or would help, their family. | |||
QoL – 2 items | ||||
ESAS (revised) | 76% indicated DT heightened their sense of dignity. | |||
Evaluation
| ||||
DTPFQ | 47% indicated DT increased their will to live. | |||
Akechi et al., 2012 [24] | Japanese sample; | Two trials of DT feasibility, no control |
Evaluation
| Major problems with recruitment in Study 1 but not Study 2. The authors raise concern about acceptability of DT in Japanese culture. |
DTPFQ– 9 items | ||||
11 pts with advanced cancer in hospice and hospital pall care unit | Assessment: No schedule of assessment reported | |||
Overall positive evaluation of DT: 67% indicated DT heightened their sense of dignity, 56% indicated DT was beneficial, 78% indicated DT had already helped, or would help, their family. | ||||
Chochinov et al., 2012 [25] | Canadian sample; | Single group trial of DT |
Evaluation
| Cognitively intact: reports helpful and satisfactory, but no specification of benefits around meaning, purpose, dignity. |
DTPFQ– 9 items | ||||
Assessment: 2–3 days post DT | ||||
12 cognitively intact and 11 cognitively impaired frail elderly in long-term care | ||||
Cognitively impaired: proxy participants (family members) indicated DT is helpful to them and their families. | ||||
Johns 2013 [26] | US sample; 10 pts with metastatic cancer from community or outpatient oncology unit | Single group trial of DT | • 7-item cancer distress measure | 4 completers (3 declined to finish, 3 deaths); sample size too small for statistical analyses. |
• BDI | ||||
Assessment: Baseline & f/u 1 shortly post DT, f/u 2 within 1 month | • FACIT-PAL | |||
Evaluation
| Feasibility and acceptability reported from surviving participants. | |||
DTPFQ | ||||
Australian sample; | Single group pre-post trial of DT | • PDI | Feasibility and acceptability established. | |
• FACIT-SP | High rating of satisfaction (93%) and helpfulness (89%) for DT. | |||
29 pts diagnosed with motor neurone disease living in community | Assessment: |
Evaluation
| ||
Baseline, f/u | • DTPFQ | |||
1 wk post DT | ||||
• 3 additional single-item measures of hopefulness & family support. | No significant changes in hope, spirituality or dignity. | |||
Danish sample; 80 pts w incurable ca from hospice and hospital pall care unit | Single group pre-post trial of DT | • SISC - 6 items | No change on any measure at f/u 1 or f/u 2 except QoL decreased baseline to f/u 1. | |
• PDI | ||||
• Quality of life: EORTC QLQ-C15- | ||||
Assessment: | At f/u 1 and f/u 2 positive responses on DTPFQ. | |||
Baseline, f/u 1 immediately after receiving generativity document (median 36 days post DT), f/u 2 1 mo after DT (median 60 days) | • PAL | |||
• HADS | Issues w recruitment (~50%) | |||
• Palliative | Issues w retention f/u 1 69%, f/u 2 39%. | |||
• Performance scale ver2 (PPSv2) | ||||
Evaluation
| Issues with floor effects (30%-70% no sx on SISC/PDI). | |||
DTPFQ– 9 items | ||||
Subgroup analysis for each SISC/PDI item using those with some sx found some improvement for selected items. | ||||
Vergo et al., 2014 [19] | US sample; | Single group pre-post trial of DT | • TIA | DTPFQ indicates DT very acceptable; increase in death acceptance over time (11% at baseline vs. 57% at f/u 2). |
15 pts with stage-IV colorectal cancer receiving palliative chemotherapy | • Distress Thermometer | |||
Assessment: | ||||
• ESAS | ||||
Baseline, f/u 1 | • 2-item QOL | |||
2–3 weeks post-DT, f/u 2 1 month post-DT | • H-CAP-S | |||
Evaluation
| ||||
DTPFQ – 5 items | ||||
Efficacy studies
| ||||
Chochinov et al., 2011 [31] | Canada, Australian, & US sample | 3 arm RCT: DT vs client-centered care vs standard care | Outcomes | No significant differences on any of the outcomes. |
• Structured Interview for Symptoms and Concerns (SISC): 7 items | ||||
Pts in the DT group had higher scores than the other grps on 8 of 22 evaluation items. | ||||
441 pts receiving palliative care in hospital, hospice or home | ||||
Assessment: | ||||
• Edmonton Sx – 8 items | Issues with recruitment, retention, floor effects. | |||
• Quality of life: 2 items | ||||
Baseline & f/u immediately post receiving generativity document | • HADS | |||
• FACIT-Sp | ||||
PDI | ||||
Evaluation
| ||||
DTPFQ– 22 items | ||||
Intervention: psychiatrist, psychologist, palliative care nurses | ||||
UK sample | Design RCT (Phase II trial for acceptability, estimates of effect sizes): Tx = DT plus usual care; Control = usual care | Primary: | No differences on PDI. | |
• PDI | ||||
No differences for any secondary outcomes, except higher hope in DT grp at f/u 1 (p = .02). | ||||
45 pts with advanced cancer | Secondary: | |||
• Hope | ||||
• HADS | ||||
• EQ-5D | Patients in the DT group had higher scores on DTPFQ, some significant. | |||
Assessment: | • palliative-related outcomes (Hearn) | |||
DTPFQ | ||||
Baseline, f/u 1 1 week post DT, f/u 2 4 wks post-DT. | ||||
Intervention: oncologist | ||||
UK sample | Design RCT (Phase II trial for potential effectiveness, feasibility): Tx = DT plus usual care; Control = usual care | Primary: | No significant differences on effectiveness measures at any point; reduced dignity-related distress as measured by DTPFQ across both groups (p = 0.026). | |
64 pts in older care homes | • PDI | |||
Secondary: | ||||
• GDS | ||||
• HHI | ||||
• EQ-5D | ||||
Acceptability: | Patients in the DT group significantly more likely to feel DT had made life more meaningful at f/u 1 (p = 0.04). | |||
• DTPFQ | ||||
Assessment: | ||||
Baseline, f/u 1 7 days post-DT, f/u 2 8 wks post-DT | ||||
Intervention: palliative care nurse | ||||
Portuguese sample | Design RCT: Tx = DT+ usual care; Control = usual care | HADS | DT associated with lower depression at f/u 1 and 2 (p < 0.0001) and lower anxiety at f/u 1, 2 and 3 (p < 0.0001). | |
60 terminally ill pts | ||||
Assessment: | ||||
Baseline, f/u 1 4 days post-DT, f/u 2 15 days post-DT, f/u 3 30 days post-DT | ||||
Intervention: palliative care physician |
Study | Sample | Methods | Main study finding |
---|---|---|---|
Hack et al., 2010 [39] | 50 edited DT transcripts (17 Canadian and 33 Australian) from patients with terminal illness in inpatient palliative care programs, sample from Chochinov et al., 2005 [17] | Content analysis, constant comparative analysis of completed DT legacy document by three investigators | • Throughout DT interview patients reflect on two to three personally meaningful core values, such as ‘family’, ‘pleasure’, ‘caring’, and ‘sense of accomplishment’. |
• DT is used by patients to confirm personal identity. | |||
• Investigators suggest more theoretical analysis of “meaning-making” construct in end-of-life care needed. | |||
Tait et al., 2011 [40] | 12 Canadian patients with terminal illness in inpatient palliative care | Constant comparative analysis of DT interviews | • Three main ‘types of interviews’ emerge: ‘Evaluation narratives’, focusing on life prior to illness; ‘transition narratives’, focusing on change in health status and its meaning; ‘legacy narratives’, focusing on future without the patient. |
• Investigators suggest narrative themes share commonality with medical interview and eulogy genres. | |||
Montross et al., 2011 [41] | 27 US community-based hospice patients | Coding consensus, co-occurrence, and comparison analysis of DT legacy documents | • Similar findings to Hack et al., 2010 [39], core values consistently expressed in transcripts. |
• DT is feasible in a community-based setting. | |||
Hall et al., 2013 [34] | Framework analysis of qualitative interviews conducted at T1 and T2; interviews on resident views of DT and/or being a study participant (control group). | • Of 9 themes, 3 were unique to intervention group: ‘views of legacy document’; ‘generativity’; and ‘reminiscence’. | |
• DT not recommended by investigators, in current form, with participants with cognitive impairment: findings suggest DT document may reflect ‘distorted sense of self’ and prompt distress. | |||
Hall et al., 2013 [42] | Framework analysis of qualitative interviews conducted at T1 and T2; interviews on pt views of DT and/or being a study participant (control group). | • 5 of 7 themes in Dignity Model theory present in both interviews groups; ‘generativity’ found only in intervention group. | |
• No evidence of ‘role preservation’ as described in Dignity Model in this sample. | |||
• Qualitative interview reporting of higher levels of hopefulness in both groups from participating in study, despite no change in quantitative component of study. |
Study | Sample | Implementation | Discussion |
---|---|---|---|
Avery & Savitz, 2011 [44] | US patient with schizoaffective disorder in inpatient psychiatric unit | DT protocol questions used by patient to write life story, prompted by worries of not spending time with family because of illness. Investigator typed and edited narrative and discussed with patient. | • Patient reported that narrative had ‘restored hope’ to him. Patient shared copies of document with loved ones. |
• Investigators note DT could be beneficial for pts with chronic mental illness, “improving patient narratives”. | |||
Avery & Baez, 2012 [43] | US patient with major depressive disorder in inpatient setting | DT protocol used by investigator to aid patient in ‘gaining fresh perspective’ after severe depression following loss of job. | • Patient reported DT aided her in ‘finding hope’, and improved her mood. |
• Investigator notes use of DT to make sense of major life event and loss. | |||
• Investigator posits DT legacy document may be supportive to family members of patients with chronic mental illness. | |||
Hall et al., 2013 [34] | Focus on ‘dignity-related problems’ expressed by patients, qualitative review of DT legacy documents. | • Investigators note DT administered in a context of complex and quickly changing circumstances. | |
• Distressed patients may find focus on ‘overarching truths, feelings and insights’ as indicated in DT protocol very difficult. | |||
• DT therapeutic relationship is challenging with patients who are distressed given short time-frame of interaction. |