In contrast to the publications describing and evaluating DT in Canada and Australia [
5], this feasibility study tested DT in a considerably different culture. Overall, the relevance, comprehensibility, acceptability, and feasibility of DT with Danish patients were demonstrated. However, the study revealed the need for minor adjustments of DT, before larger studies or clinical applications in Denmark could be considered. While some of the changes may be relevant only for Danish patients, others may be of general relevance for clinicians and investigators considering cultural adaptation of Dignity Therapy within their particular locale.
Recommendations and adjustments to the DTQP
Each of the six areas of concern raised by the professionals and/or patients is important to discuss when considering culturally directed protocol adjustments. Our recommendations are based on the data from this study, and are synchronous with the overall intentions of Dignity Therapy. These recommendations have been developed and vetted by our research group, in close cooperation with all participating therapists.
(1) 'Too existentially confronting issues'
It is remarkable that the concerns of DT being too existentially confronting were not confirmed by the patients. This may indicate that the therapists have been successful in adapting the interview to each patient, and confrontation has thus been avoided. Maximal attention must be paid to ensure that the patients are not distressed by the intervention. Therapist must learn how to gently introduce topics that might be emotionally evocative, while always being respectful of the patient's healthy defenses. While a skilled therapist will guide the patient to consider each aspect of the DTPQ, he or she will do so in a fashion that gives the patient complete latitude to shape the interview in ways that are personally meaningful, fulfilling and comfortable.
Recommendation: Good DT, like good communication, is always sensitive to individual patient needs. The DTQP is meant as framework and special attention must be paid to adjust the language and content to the patients' level of acceptance. Questions 3 and 7-12 all refer to a future beyond the death of the patient; however, this is by implication, as the words death, dying, terminal or palliative are never used. Therefore, if the patient does not talk openly about death, these questions can instead be worded in terms of a 'here and now' vocabulary (e.g. tell me about some of the important things in your life [rather than focusing on 'remembering']; can we talk about some of the things life has taught you [rather than focusing on lessons to be passed along]). In this way the interview is framed as an opportunity to have things written down.
Adjustments: Because the meaning of the Danish translation of the word 'alive' in question 2 was ambiguous and overly confronting, the tense of the verb was adjusted to mean 'vigorous'(as intended in the English version) instead of 'alive as opposed to dead'. 'Still' was removed in question 7 to reduce the implication of impending death. 'Permanent' was removed from question 12.
(2) 'Cognitively challenging issues'
The patient data confirmed that specific questions may be challenging, although in most instances, not overwhelming. However, this may equally well be a reflection of the perceived importance of the task, the goals which the process may evoke with patients, and, more generally, the difficulty of conveying important memories and messages. These issues highlight the therapists' important role as a facilitator and their ability to be responsive to the patient's energy, concentration abilities and pacing of the interview.
Recommendation: It is important to reassure the patient that the DT questions are only a framework, that the creation of a DT document is a task with many solutions, and that the interview is a first step that will be followed by a process of editing. Patients who feel they are being asked to reach too high may be reminded that any reach whatsoever is a success. Superlatives such as 'most important memories' should be de-emphasized and it may be explained that even ordinary memories can be extraordinary, if they are authentic, heartfelt and unique to that individual. If patients worry about omitting important memories, messages, or people, they may be reminded that they can always add this content during the editing process. In case of these worries, the interview can focus on clarifying names, dates and places, before returning to larger content issues.
Finally, patients may be reminded that we can help give the material shape through the process of editing and that they will have a chance to participate in this process by noting things that they would want changed.
Adjustments: The term 'feel', which in Danish may imply a deeply felt need for disclosure, was changed to 'think' (question 7). In consideration of those who feared hurting others, the focus on life lessons was highlighted, with less emphasis being given to what they "would want to pass along to others" (question 9).
(3) Unacceptable self-praise
The findings here strongly suggest that Danish patients are reticent to talk about things that they feel may be perceived as boastful or simply self-praise. Many patients refused using terms such as accomplishments, importance and pride about themselves or their roles in life. This appears to be a clear cross-cultural difference from the Canadian/Australian setting where DT was developed. These Danish experiences may be influenced by the 10 commandments also referred to as the "Jante Law" [
22]: 'a pattern of group behaviour towards individuals within Scandinavian communities, which negatively portrays and criticizes success and achievement as unworthy and inappropriate' [
23].
Recommendation: Based on these experiences, the therapist should always ensure that the patient is made comfortable speaking about himself or herself. This must be done in ways that are culturally acceptable and in accord with the patient's outlook. This can be achieved with a down-to-earth approach, the therapist's reassurance of interest in the patient and a therapeutic stance of positive regard. Patients' attention can also be drawn to aspects of their life story, which deserve to be thought of as significant and worthy of knowing, from the vantage point of the therapist and the patient's family. If patients give negative responses to the word accomplish (question 5), it could be changed into 'what do you think you were able to do OR got done'.
Adjustments: To make question 6 appear less self promoting, 'accomplished' was changed into 'done' (yet left unchanged in question 5 due to insufficient data), and 'most proud of' was changed into 'most happy with'.
(4) 'Overlap'
Several professionals saw the overlap between the questions as problematic, but this did not appear to be problematic for patients. Several things may explain this discrepancy. First, whereas professionals reviewed all questions, patients were only asked selected questions as deemed appropriate from within the DT protocol framework. Second, due to repeated words or phrases, the questions may appear more similar than they actually are. Finally, patients might appreciate the chance to build on their responses, based on questions that are thematically linked.
Adjustments: None.
(5) 'Inappropriate words/phrases'
Professionals, and to a lesser extent patients, noted a number of instances of inappropriate wording in the Danish translation of the DTQP.
Recommendation: Despite the modifications listed below, some patients may still need rewording or explanation for comprehension of specific questions. Dignity Therapy should always be offered in a fashion that makes it accessible and comfortable, irrespective of the cultural context or language in which it is being conducted.
Adjustments: The terms 'specific', 'particular' and 'would want' (questions 3, 7, and 9) were removed from the Danish version to make these questions less formal and less complex. To deemphasize the term 'roles' (question 4) - which is an uncommon Danish term - and to create more awareness of the examples, the word 'roles' and the brackets were removed from the examples 'e.g. in the family, job wise or in the community etc'. To shorten question 7, the formulation 'take the time to' was removed. "Other things" in question 12 became "more" in the Danish version, which is considered to be more inclusive.
(6) Interference with the lives of others
Both professionals and patients reacted to particular words in question 10 and 11 that were considered to be too interfering or demanding on the relatives. This was not the original intent of the questions, which were designed to give patients an opportunity to provide their family members messages of comfort and support.
Adjustments: To make the issue of passing on comforting and helpful messages more clear, the first part of question 11 including the word 'instructions' was changed into "Is there anything you could say."
Questions 1, 5, 8, and 10 were not changed in the Danish version as there was no support of the professionals' concerns in the patient data and as we wanted to make adaptations to the DTQP only when necessary.
Adaptation of DT in general
Even though several Danish patients questioned the term 'dignity', it is important to note that the term 'dignity' is not referenced in the DTQP. While it was beyond the scope of this study to address this issue adequately, the patients response suggests that a future study of Dignity Therapy would demand that careful attention be paid to how DT is introduced, ensuring that the language used and the rationale provided not be overly existentially confrontative. In practice, the title would also have to be deemphasized when presenting the intervention, and more emphasis be placed on the content of the intervention.
The strategy implemented to safeguard against disappointed relatives when the patient is unable to complete DT because of deteriorating health, was to simply ask the patient after the interview: "If you are too ill or unable to complete this document, what would you prefer happened?" In this way, the patient can decide if the interview should be passed on to family members. This also provides permission for the therapist to edit possible hurtful material, so only appropriate and constructive passages are included. The experience with the patient who had no one to bequeath the document to, highlights the importance of clarifying the recipients of the document with the patient, before commencing the intervention. This avoids hurting those who do not have anyone to give the document to and offering patients alternatives that are personally viable and meaningful.
Quantitative analysis of the DT interviews
The therapists and patients' selection of questions enabled detection of certain interview patterns.
Therapists frequently asked the questions 1, 4 and 8, whereas there seemed to be a hesitation towards question 2, 5 and 11. Thus question 5 was asked using an alternative wording every time, never in its full length. The same holds for question 11 (asked 8 times, 5 times with alternative wording). While questions 2 and 5 were answered every time, question 11 was answered only 63% of the times asked and sometimes caused some patient discomfort. This again underscores the importance of adapting questions and the language used to pose questions in a fashion that is not overly jarring or existentially confronting. The rather infrequent use of question 2 (asked 4 times) may simply reflect that this is a follow-up question that is rendered superfluous if a full response has already been given.
Patients answered questions 1 and 8 very frequently when asked, whereas other questions were answered only about half of the times they were asked. Thus, the low rate of answering questions 4, 6 and 7 (each dealing with a facet of pride or accomplishments) corresponds with the qualitative analysis that illuminated some patients' objections to aspects of these questions. When asked question 12, patients typically said that they had no more to say. The interview had in most cases covered the most essential topics with the previous questions.
Feasibility testing of DT in different groups of cancer patients
While the results of this study indicate that DT is feasible in palliative care institutions, the figure of 25 participants out of 74 truly eligible patients also shows that this is not an intervention that is applicable to all patients. Furthermore, a large proportion of the patients is too ill in this period of their illness, and never passes the entry criteria. However, in comparison to the results from the gynecologic oncology department, the discrepancy between how well DT was received by patients was large. This eventually made us cease recruitment at the oncological ward, concluding that this study was unable to establish the feasibility of DT in the non-palliative setting. It should be emphasized that we made an effort to adapt the intervention to this setting (i.e. not referring to incurable disease or death in the presentation, but rather motivating participation with reference to how patients in their situation often reflect about their lives and are occupied with wishes to write down memories). However, this did not have the effect we hoped for among staff, who seemed to become gradually more reluctant in including and informing patients. Thus, even though the prognosis of the referred patients was not much better than that of patients admitted to palliative care, DT did not appear as acceptable in its present research design in this particular oncological setting. These experiences further suggested that a future study of Dignity Therapy will demand that careful attention be paid to how DT is introduced, ensuring that the language used and the rational provided not be overly existentially confrontative.
Strengths and Limitations of the study
This study did not deal with the feasibility of Dignity Therapy overall, but rather, focused on the elements of the DT interview. Further evaluation of the intervention, including testing the feasibility of the editing process, is needed. However, a major strength of this study is that the feasibility of the DTQP was examined from several angles. The study included examining a professional 'hypothetical perspective' and an 'in-vivo patient perspective', and investigated how the rationale of the DT-interview was perceived in different clinical settings. Together, these data give diverse insights into the reception of DT in a Danish culture. Relatives' views on DT and the DTQP have not been explored in this study, but are important.
It must be kept in mind that professionals usually complimented the overall gestalt of the question, followed by various concerns or specific critique raised afterwards. In the analysis, we focused primarily on the latter, but it should be emphasized that their overall evaluation was highly positive. The answers provided by professionals should be viewed with caution, because they were not directly involved in or acquainted with DT. That said, the concerns raised by professionals helped us structure the analysis of patient data and could be tested, while at the same time, we remained open to issues raised by patients that had not been addressed by professionals.
It should be noted that the strategy of inviting patients to share their thoughts about relevance, comprehension and acceptability led to feedback that was mainly problem focused and often lacking positive comments. When patients found the questions appropriate, they simply proceeded to answer the questions (rather than offering an evaluation). Had we tested the questions independently of carrying out DT, the number of positive responses may have been higher. We decided not to proceed in that way, given that patients had extremely limited time and energy, and testing questions might have taken time away from DT.
In the analysis, it was difficult to determine whether some of the concerns - such as the risk of excessive existential confrontation - were based on a protective or paternalistic stance, rather than being attributed to linguistic or cultural translation issues. Among professionals and staff, there was a general fear of confronting the patients excessively. This suggests that people hold misperception that DT focuses prominently on issues pertaining to death and dying. In order to introduce DT across various settings, the protocol will need to be explained well, and the staff educated that in the hands of a sensitive clinician, death awareness need not be confronted by way of dignity therapy. Clearly, professional education and positive experiences with DT, illustrating its applicability and success with this particular patient population, is required. Without appropriate understanding and buy in on the part of healthcare providers, Dignity Therapy--like any novel therapeutic approach--will not be given its fair chance to mitigate suffering for patients facing life threatening and life limiting conditions. Although very few patients conveyed feeling overly confronted, these issues still need to be broached in future research.
The first author had a dual role as both a researcher and therapist. To mitigate any risk of bias, another researcher (SRH) took part in the qualitative analysis. All authors were involved in formulating the final conclusions and took part in the final write-up. To further minimize bias, the opinions of dignity therapists regarding the DTQP were not included in the professional data. Therapist-to-therapist variation can influence a feasibility study such as this. Four psychologists participated as dignity therapists in this study. Recognizing the important role of the therapists highlights the need to evaluate inter-therapist variation, whether launched in a new country, or when new therapists from different professional backgrounds and institutions within the same country are involved.
The experiences of testing DT with cancer patients in active treatment were limited, making it difficult to draw final conclusions about the feasibility of DT in non-palliative settings. Attention to the recruitment difficulties we encountered and future tailoring of DT to this particular population is warranted.