Feasibility, acceptability and adaption of dignity therapy: a mixed methods study achieving 360° feedback

Abstract

Background

Dignity Therapy (DT) is a short-term intervention to reduce psychological suffering in end-of-life care. Its strength lies in evidenced-based development and investigation. The aim of the present study is to investigate the feasibility of DT at German palliative care units (PCU), as well as the acceptability and adaption of a German version of the DT question protocol (DTQP).

Method

A clinical multicentre mixed methods study, whereby patients and relatives provided quantitative (feedback questionnaires) and qualitative (cognitive interviews) data on the DT intervention. Before using the DTQP on patients, healthcare professionals (HCP) were invited to participate in cognitive interviews to provide input on DT. Therefore 360° feedback was achieved. Finally, the conducted DT interviews were examined.

The study took place at two German PCUs (Mainz and Würzburg). Participating HCPs were physicians, psychologists, nurses and chaplains. Patients admitted to the PCUs were eligible to participate if they had a terminal illness and a life expectancy ranging from 2 weeks to 12 months.

Results: Out of 410 admitted patients, 72 were eligible and 30 (7.3% of all patients and 41.7% of eligible patients) participated. On average, 9 questions from the DTQP were used per DT interview. Subsequent cognitive interviews with patients produced four main categories of feedback (on the title, the question protocol, wording, and the questions actually asked). Finally, of the 30 participants, 19 completed the feedback questionnaire, as did 26 relatives. Of those, 18 patients and 24 relatives evaluated DT as helpful.

Conclusions

DT is feasible for German PCUs. Our research yielded a validated German translation of the DTQP following EORTC guidelines and findings were reported according to the COREQ checklist for qualitative design.

Trial registration.

The study was registered retrospectively on the 22nd of December 2017 at the German Clinical Trials Register (DRKS00013627).

Background

Depression, anxiety, hopelessness and loss of meaning and purpose are central symptoms of the demoralization and psychological distress faced by patients in palliative care [1]. These burdens are associated with loss of dignity [2, 3]. In a systematic review, Monforte-Royo concludes that the loss of dignity and its influence on hopelessness and loss of meaning may result in a wish for hastened death [4]. An updated systematic review added that “loss of self” and the “lived experience of a timeline towards dying and death” were common features of a patient’s wish to hasten death [5]. These findings indicate that patients need appropriate supportive care to address psychological symptoms and ensure quality of life in their final days. An evidence-based intervention to care for the terminally ill on a psychosocial and spiritual basis is Dignity Therapy (DT) [6]. DT was first described in 2005 by Harvey Max Chochinov, based on his findings on dignity in the terminally ill and the dignity model [3]. The dignity model provides three major dignity categories (illness-related concerns, dignity-conserving repertoire, social dignity inventory) and several themes (e.g., dignity-conserving perspectives and dignity-conserving practices) evoked from patients’ explanations of their understanding of dignity. The basis of DT is a semi-structured question protocol (Table 1).

Table 1 The Dignity Therapy Question Protocol

During an audio-recorded interview session the therapist guides the patient through these questions to enhance the dignity-conserving perspectives. Most importantly the framework of questions is intended to be flexible with a varying number of questions actually used in order to suit the individual patient ([7], p. 185). The transcript of the interview session is edited and read out to the patient; if necessary, further editing can be performed. The transcript is then finalized to create a permanent generativity document which can be shared with loved ones [7]. Research on the feasibility and efficacy of DT has been published for six countries [8]. Although findings regarding its efficacy have been contradictory in recent randomized controlled trials [8, 9], helpfulness and meaningfulness are proven benefits for patients and relatives, and DT is regarded as feasible in different clinical settings, healthcare systems and cultures. These findings were an encouraging starting point to evaluate the implementation of DT in palliative care units (PCU) in Germany.

Although DT has already been used in Germany to a limited extent, the Dignity Therapy Question Protocol (DTQP) to date lacks a scientifically verified translation into German. Various unproven translations of the question framework have been used up to this point. What is more, the feasibility and acceptability of DT in Germany have not been examined before. And yet these issues are fundamental to enable further comparable research and the implementation of DT in Germany. The purpose of this research was therefore to conduct a mixed methods study at two German PCUs, in Mainz (M) and Würzburg (W). Similar to the implementation of DT in Denmark [10], the aims of our study were (1) to translate the DTQP and if necessary adapt the question framework, and (2) to test the feasibility and acceptability of DT in an inpatient setting.

Methods

The clinical multicentre study comprises quantitative and qualitative research at two PCUs in the university hospitals of M and W. After their actual DT interview, patients participated in semi-structured cognitive interviews to report their experience of the process through free narratives. Narratives are the most appropriate form of research to report experiences. Patients also completed a feedback questionnaire (quantitative and free text comments) to gather further information on their estimation of DT. Once the patient DT process was complete, relatives were also asked to evaluate DT by completing a feedback questionnaire similar to that of the patients. To achieve 360° feedback, healthcare professionals (HCP) from different disciplines within palliative care were interviewed in expert focus groups. This method allowed critical discussion of the different aspects arising from DT. The information detailed below follows this timeline and complies with the consolidated criteria for reporting qualitative research (COREQ) [11].

Translation of the dignity therapy question protocol (DTQP)

In accordance with the EORTC Translation Procedure [12], two English and two German native speakers conducted forward-backward translations of the DTQP. These translations were discussed at round tables by physicians and psychologists experienced in palliative care and, where necessary, checked back with H.M. Chochinov to obtain a pilot version.

HCP evaluation of the DTQP German translation

In June and July 2015, two experienced researchers (S.S.M., qualified psychologist, and PhD S.G., sociologist) conducted focus groups with HCPs in meeting rooms at the university hospitals of M and W; the meetings lasted 60 and 70 min respectively. Both researchers were clinical and scientific colleagues of the participants from M; however, prior to study commencement, they were not acquainted with the HCP participants from W. Participating HCPs were all highly experienced in palliative care and were purposively recruited by e-mail. The number of participants represents the multi-professionalism of palliative care teams, consisting of five HCPs in M (psychologist, chaplain, nurse and two physicians) and seven HCPs in W (two chaplains, two nurses and three physicians). All participants were informed of the aim to achieve a German translation of the DTQP and they all gave written informed consent to participate. Each participant was attributed an ID to anonymize the qualitative data. As none of the 12 HCPs had previously conducted DT, their statements can be regarded as unbiased. Following a comprehensive interview guideline (developed by S.G. according to Willis’ recommendations on cognitive interviewing [13], Additional file 1), the HCPs were requested to express spontaneous associations regarding the title of the intervention, the wording of the DT questions, and the adaption of DT to the German cultural context. As well as visually summarizing and recording the participants’ statements on flip charts during the sessions, audio recordings were also made. S.S.M. and S.G. then transcribed and analysed the qualitative data based on the principles of qualitative content analysis as described by Kuckartz [14]. This method enables the elaboration of core messages from the interview transcriptions, by using inductive and deductive approaches in a systematic manner. Only parts of the interviews pertaining to the research questions have been considered, numbered, and arranged within an Excel sheet. Analysis units from the first interview transcript were paraphrased and generalized, and redundancies were identified, and inductively subsumed into main categories and subcategories. This resulting code structure was used to analyse the second interview deductively, and new codes were added inductively to the code structure, as needed. Typical phrases were identified. In the first instance both researchers coded independently. To achieve interrater reliability, categories were discussed and any coding conflicts were resolved. This process was repeated until the final structure of categories was formed and all relevant parts of the text were coded appropriately. The research group reviewed the results to ensure inter-subjectivity and coherence within the code structure. The results constituted the first step in the linguistic and cultural adaption of the DTQP.

Patient evaluation of the DT intervention and the DTQP

Leaning on the experiences and data of the Danish DT feasibility study [10], we decided to include 30 patients from two PCUs in our study. Each patient admitted to the PCUs in M and W was attributed an ID and was screened for eligibility. Inclusion criteria were: having a terminal illness with a clinically estimated life expectancy of up to 12 months; age ≥ 18 years; ability to give informed consent; possibility to nominate a relative for the feedback questionnaire; and appropriate German language skills. Exclusion criteria were: having cognitive impairments or an estimated life expectancy below 2 weeks, especially where the dying process had begun. After giving written informed consent, patients participated in the audio-recorded DT interview led by DT therapists (M: psychologist and male nurse; W: psychologist) trained by H.M. Chochinov. All steps of the DT protocol were fulfilled (interview session, transcribing, editing, reading out to the patients, finalizing the document and taking it to the recipient). Detailed information about the duration of the DT interview and DT intervention was logged. Furthermore each question asked during the DT interview was counted, repetitions were listed, and rewording as well as patients’ noteworthy reactions were noted.

After the DT interview using the DTQP, the participants took part in semi-structured cognitive interviews with their therapists to report their experience of the implementation of the DT interview (the interview guideline was produced by S.S.M. and S.G. according to Willis’ recommendations on cognitive interviewing [13], Additional file 2). All sessions took place in the patients’ single rooms at the PCUs. The cognitive interviews were recorded, transcribed and analysed by S.S.M. and S.G. using qualitative content analysis [14] as described above. The basic coding tree results from the major themes of the cognitive interview. The resulting data constituted the second step in the adaption of the DTQP.

Patient and relative feedback questionnaires

After delivery of the finalized generativity document, patients and relatives (as nominated by the patients and after having given informed consent) were asked to complete the DT Patient Feedback Questionnaire [15] and the DT Family Feedback Questionnaire [16] respectively. Both questionnaires previously had been translated into German by forward-backward translation (Additional file 3 and Additional file 4). They combine quantitative items (5-point Likert scale; 1 = strongly disagree, 5 = strongly agree) and free text comments.

All data were analysed descriptively with SPSS 22.0 and Microsoft Excel®.

Results

The following results are presented in order of the described methodology and timeline.

HCP views on the DTQP

Besides general remarks on the interpretation of the word ‘dignity’, which some HCPs viewed in a religious way and others in a more philosophical way, we observed five main categories of comments on DT and the DTQP: (1) negative aspects of DT; (2) positive aspects of DT; (3) Dignity Therapist; (4) conducting DT; and (5) the DTQP (Table 2). There were no comments on financing DT. Among the focus group conclusions was the opinion that the PCU is an appropriate setting for DT, as the patients have single rooms. HCPs also agreed that DT could be an essential part of the interdisciplinary care for patients if it is conducted with compassion: “If DT is conducted with heart, it could be an essential part of care and it becomes effective through this [compassion] and may be guided less by the questions that are asked but by the issue that lies on the patient’s heart” (M5). One HCP compared DT to the concept of ‘holding spaces’: “You give space for life issues, experiences and suffering, and this is dignifying and a valuable encounter” (W1).

Table 2 Themes, frequencies and example quotations of HCP views on the DTQP (M1/W1 = chaplain; M4 = psychologist; M3/M5/W0/W3/W6 = physician; M2/W5 = nurse)

Participant characteristics and DT intervention data

A total of 410 patients were admitted to the PCUs in M (215 patients between June 2015 and October 2015) and W (195 patients between June 2015 and April 2016). Of these, 72 patients (17%) (M: 54; W: 18) met the inclusion criteria, and 30 of them (M: 19; W: 11) participated (7.3% of all patients and 41.7% of eligible patients). Participants’ inpatient stay ranged from 5 days to 98 days (median = 16 days). The mean age was 63 years (range: 38–88); 20 participants were female; the median Eastern Cooperative Oncology Group performance status (ECOG) was 3 with a 40% Palliative Performance Scale (PPS) rating. Table 3 provides further information on the participants’ characteristics.

Table 3 Study participant (patients and relatives) characteristics

The main exclusion criteria were: a life expectancy below two weeks (196 patients; 58%), followed by cognitive impairments (74 patients; 22%). A further 10% of eligible patients could not be included due to organizational barriers.

The median time-span of the whole DT process – from introducing it to the patient to returning the generativity document – was 15 days (mean: 24; range: 6–131). During this time, there were four contact sessions between patient and therapist on average. The mean time expenditure for therapists was 7 h (SD: 1.6; range: 4.27–10.38), comprising time to interview, edit, read out to the patient, make final editorial changes and return the finalized document to the recipient (note that this excludes time taken to transcribe the audio recording; this task was conducted by student assistants). The mean time expenditure for the patients was 2.15 h (SD: 0.5; range: 1.25–3.5). The mean time required for the DT interview was 48 min (SD: 19; range: 20–81). Once finalized, 19 of the generativity documents were given to the patients solely (to be handed out to the relatives by themselves or after their death), 3 documents were given to patients and relatives together, and 8 were received directly by relatives.

On average, nine questions were used per interview. Q1 (“Tell me a little about your life history; particularly the parts that you either remember most or think are the most important”) was always asked; the least asked question was Q6 (“Why were [these roles] so important to you and what do you think you accomplished within those roles?”). Q2 (“When did you feel most alive?”) was asked in 24 out of 30 interviews. In one interview, to match the language used by the patient, the wording changed from “alive” to “bloody good” (M 129). In 17 out of 23 interviews, Q3 (“Are there specific things that you would want your family to know about you?”) was responded to with comments like, “I don’t have any secrets”, “I think they know everything”, or “I don’t hide anything”. Q7 (“What are your most important accomplishments, and what do you feel most proud of?”) was used 26 times. We found that Q8 (“Are there particular things that you feel still need to be said to your loved ones?”) was sometimes personalized, e.g. “to your son” (5/16). Q10 (“What are your hopes and dreams for your loved ones?”) was used 27 times and reworded 17 times (from “dreams” to “wishes”). Similarly, Q12 (“What advice or words of guidance would you wish to pass along to your …?”) was used in 11 interviews and reworded (skipping ‘words of guidance’) without prior agreement between the interviewers.

Patient views on the DTQP and the DT intervention

Out of 30 patients, 29 subsequently took part in cognitive interviews to share their views on the DTQP (mean duration: 10 min; SD: 6; range: 2–30). We identified four main categories of feedback: on the title; the DTQP; the wording of individual questions; and the set of questions actually asked during the DT interview (Table 4). In addition, patients gave the following positive remarks and ideas regarding DT: the questions could lead to more openness in talking about cancer; DT preserves pride; DT should be widely offered; DT should be conducted in the presence of relatives; DT is only successful if it is a helpful encounter. More sceptical comments related to the effectiveness or usefulness of DT or to the fear of psychological challenges arising. One patient suggested adding the following question: “What has been your mission in your life?” (M 43). Regarding Q5, she recommended changing “remits” into “roles” (M 43); this was the de facto wording in 8 out of 23 interviews. For comparative purposes, Q7 (“What are your most important accomplishments, and what do you feel most proud of?”) was of particular interest: Danish colleagues found that using the word “proud” was not feasible for the Danish culture [10 Pride was only discussed as negative respectively positive by 2 patients each. Case M 136 illustrates this issue. Within the cognitive interview the patient stated that “pride is too strong” and that “it should be replaced with contentment”. Yet, during the DT interview she had easily answered that question by recounting what she had achieved on her own after getting divorced. The interview atmosphere was clearly not negatively affected by the word “proud”; in contrast it seemed to offer her the opportunity to be proud of herself.

Table 4 Themes, frequencies and example quotations of patient views on the DTQP (N = 29)

Of the 30 patients who took part in the DT interview, 19 returned feedback questionnaires. In all, 18 patients evaluated DT as helpful (“It was helpful, because DT gave me a feeling of stability” [M 43]) or satisfactory (“It was far more than satisfactory. DT is a gift. It was more than I expected” [M 43]); 14 patients agreed that DT heightened their sense of dignity (“I feel accepted the way I am” [W 42]). All patients were satisfied with their psychosocial care. Statistics and selected comments for all items are presented in Table 5.

Table 5 Patient feedback questionnaires on DT

Family member feedback questionnaires on the DT intervention

Out of 30 nominated relatives, 26 provided feedback and 23 of these evaluated DT as helpful for their loved ones (“To reminisce has brought up many smiles and shown how beautiful his life was and how precious life is.” [M N99]); 20 relatives agreed that DT was as important as any other aspect of care (“To talk about former times reduced spiritual pain.” [W N23]). Further, 24 relatives would recommend DT to other patients and families (“All terminally ill should receive help in this wonderful way.” [M N128]). Statistics and selected comments for all items are presented in Table 6.

Table 6 Family member feedback questionnaires on DT

Establishment of the final consensus version

The collected data led to the establishment of a consensus version, discussed by a DT expert group (S.S.M., S.G., E.J., and Jan Gramm and Jochen Spang). Slight changes to the intermediate translated version of the DTQP were made for Q3, Q4, Q5, Q8, Q9, Q10 and Q12. As “proud” was not a sensitive issue for HCPs or patients, Q7 remained. The final German version of the DTQP is provided as Additional file 5.

Discussion

This is the first report evaluating DT in Germany. DT is a feasible intervention for PCUs in Germany and has demonstrated high levels of acceptability among patients, relatives and HCPs. The German DTQP has now been proved ready for the implementation of DT in Germany; it also provides a starting point for further research. Our methodological procedure included independent double forward-backward translation, discussions with HCPs, cognitive interviews with patients on their experience of the DT interview and the set of questions they were asked, and finally, general feedback on DT as an intervention from both patients and their family members. By providing the cognitive interview guidelines (Additional file 1 & Additional file 2), we want to contribute to further research projects on the implementation of DT in different international linguistic and cultural settings. The aspects of acceptability (for HCPs) and helpfulness and meaningfulness (for patients and relatives) were supported within this sample, although this result is limited by a small sample, mainly of patients suffering from cancer. Overall, 30 out of 72 (41.7%) eligible patients participated. For the aspect of feasibility, our results are encouraging compared to a two-year Danish study on DT that included 80 out of 389 eligible patients (23.5%) [17], as well as to a study by Hall [18], where 45 out of 188 (24%) patients responded. However, in a Portuguese study by Julião et al. only 4 of 92 patients declined to participate [9]. As we found within the cognitive interviews, DT is an intervention that is most successful through a respectful relationship between the therapist and the patient; it has to be taken into account that the effectiveness of the intervention might be influenced by the interviewing therapist. The need for further research into the efficacy of DT from the viewpoint of different HCPs and in diverse settings is described at length by Fitchett [8]. The mechanism of action of DT on psychological and spiritual needs is also largely unexplored. Wang et al. have identified a lack of randomized controlled trials on life review interventions in general and especially for DT [19]. So far, only a Portuguese study found significant reductions in psychological distress by DT [9].

Conclusions

In summary, DT appears as a feasible and promising intervention in Germany – as well as in numerous other countries – for patients approaching the end of life. Further research on the mechanism of action and suitable methods to elucidate its effects on patients and relatives is highly warranted. Finally, there is also a need to further evaluate sources of funding for DT, as well as the impact of an extensive implementation.