Introduction
Dignity therapy (DT) is a brief psychotherapeutic intervention that aims to help seriously ill patients maintain their sense of integrity, establish continuity of self through a legacy story, find meaning in their life-threatening illness, and provide a legacy document to their family while also providing spiritual comfort to the patient (Chochinov Reference Chochinov2012). Despite the need for more research on the effect of DT on physical and emotional symptoms, there is ample evidence supporting its clinical use for patients approaching death to enhance their end-of-life experience and promote an increased sense of meaning and purpose (Chochinov et al. Reference Chochinov, Kristjanson and Breitbart2011; Fitchett et al. Reference Fitchett, Emanuel and Handzo2015). Cancer patients who express unmet spiritual needs struggle with meaning and purpose and have increased end-of-life costs, particularly those who rely on religious coping methods (Balboni et al. Reference Balboni, Balboni and Paulk2011). Spiritual concerns are present in as many as 86% of patients with advanced cancer (Winkelman et al. Reference Winkelman, Lauderdale and Balboni2011), indicating a large population that could benefit from DT. However, little is known about the costs of delivering DT in practice settings. This article examines the cost of DT within a multisite, randomized clinical trial (RCT).
Literature review reveals 2 studies with DT costs (Kelly et al. Reference Kelly, Kynoch and Ramis2023; Montross et al. Reference Montross, Winters and Irwin2011) and 3 other studies with time data as a proxy for cost estimates (Bentley et al. Reference Bentley, O’Connor and Williams2020; Bentley et al. Reference Bentley, Aoun and O’Connor2012; Hall et al. Reference Hall, Goddard and Opio2012). There was substantial variation in how costs were estimated and reported in mostly small studies, with reported costs ranging from an average of $55 (n = 27) (Montross et al. Reference Montross, Winters and Irwin2011) for transcription to $600 (n = 7) (Kelly et al. Reference Kelly, Kynoch and Ramis2023) for all DT processes that required about 6 to 15 hours (Bentley et al. Reference Bentley, O’Connor and Williams2020; Bentley et al. Reference Bentley, Aoun and O’Connor2012; Hall et al. Reference Hall, Goddard and Opio2012; Kelly et al. Reference Kelly, Kynoch and Ramis2023; Montross et al. Reference Montross, Winters and Irwin2011). To add clarity about the costs of DT, we examined costs of an implementation model, including costs of interviewing patients, transcribing the interview, editing the legacy document, and validating the final legacy document with the patient. This information will be valuable to translate DT within clinical practice settings and for future research.
Methods
With institutional review board’s approval at all sites, we utilized a pre-/post-test randomized controlled trial with a 4-step stepped-wedge design over approximately 12 months per step as previously reported (Kittelson et al. Reference Kittelson, Scarton and Barker2019). Eligible cancer patients aged 55 years and older were referred by the palliative care team during their routine clinic visit (Fig. 1). A DT trained chaplain or nurse implemented the DT (Fig. 2) (Chochinov Reference Chochinov2012). The DT interview was audio recorded and transcribed with accuracy verification by a single professional, Health Insurance Portability and Accountability Act (HIPAA)-certified transcription service. Trained editors edited the transcripts to produce the legacy document but did not track their time since they were paid a flat fee per document to organize the flow of information, remove extraneous information, and identify information deemed potentially emotionally harmful to the recipient or their loved ones. The therapist reviewed the edited document with the patient before providing the final document, which was emailed or mailed to the patient in a binder (Fig. 2). All study procedures were conducted in person for steps 1–3 and virtually via telephone or Zoom for step 4 to ensure safety during the COVID-19 pandemic.
Overall flow of the patient through the study visits and procedures.
Summary of the dignity therapy protocol.
Cost data were obtained from the transcription service invoice for each patient that included the time required and the cost per minute, which was higher for the occasional expedited service required given the patient’s condition. Analysis focused on cost and transcription time by site and by therapist discipline. Independent t-test and analysis of variance were used for comparisons of time since the actual cost included extra services such as rapid processing requests or more than 2 speakers, which occurred for only 6 participants.
Results
The intervention group included 317 patients who were randomized and completed baseline questionnaires; 249 completed a recorded DT interview. Of these, we have invoices for the transcription of 242 interviews. The demographic and clinical characteristics of these 242 patients are presented in Table 1. Participants were mostly identified as female and non-Hispanic/Latino White with a mean age of 66.0 (SD = 7.4) years. Most participants were married, had some college experience, reported a family annual income of $50,000 or more, had stage 4 cancer, and had a palliative performance score ≥70 (Weng et al. Reference Weng, Huang and Wilkie2009).
Demographic characteristics (N = 242)
Transcription costs
Table 2 displays the average costs and time necessary for transcribing the 242 DT interviews. The mean cost per transcript was $84.3 (SD = 23.8, minimum = 11.1, and maximum = 157.4). The cost of transcribing an interview was proportional to time, with the exception of 6 transcriptions that were expedited to meet a deadline. The mean time needed for transcription was 52.6 minutes (SD = 14.6, minimum = 7, and maximum = 99). The vast majority (89%) of the transcription times were between 31 and 79 minutes; 17 transcription times were shorter than 30 minutes and 10 longer than 80 minutes. Time varied by provider type, with chaplain interviews on average about 5.5 minutes longer (p = 0.004) than nurse interviews.
Average costs and time required to transcribe all dignity therapy interviews and by interview provider type and study site
* p value is for comparison of time since cost includes extra service such as rapid processing request or more than 2 speakers; *Independent t-test; **Analysis of variance; N = nurse site, C = chaplain site; transcription rate $1.59/minute regular rate; $1.89, $2.09, $2.59/minute for expedited (n = 6).
Additionally, we observed differences in cost and time based on study site. Site 4 had the highest mean cost per transcript ($105.1, SD = 22.1) and time required to transcribe a transcript (65.7 minutes, SD = 14.1), whereas Site 3 had the lowest mean cost per transcript ($60.3, SD = 19.9) and time required to transcribe a transcript (37.9 minutes, SD = 12.5). The time differences by site were statistically significant (p < 0.001).
Other fixed costs
The study involved paying contracted editors $87–$112 for each transcript, with the higher costs occurring when a two-phased editing process was implemented to complete the high volume of transcripts in the final step when all sites were delivering the DT intervention. Editors’ anecdotal reports indicated that the editing time was variable but typically 3 hours per transcript. DT therapists were paid $50 per hour for 3 hours of work per patient. This payment covered scheduling the patient for the framing interview, conducting the interview, validating the legacy document with the patient, and completing the documentation. Additionally, the cost of each binder was $8, and its mailing cost was $2. Summing transcription and fixed costs, the typical amount for each DT protocol was $331–$356.
Discussion and conclusion
We are the first to provide a comprehensive analysis of the costs associated with the DT intervention in a large sample. Included were costs for intervention delivery and transcription and editing of the legacy document. Transcription time was longer for chaplains than nurses. There was considerable variability by site in the transcription times despite the intervention being protocolized. Our DT protocol implementation model took around 7 hours per patient.
Differences in the reported DT cost-related data make it difficult to compare our findings with those of previous studies. Transcription costs from a decade ago averaged nearly $56 (Montross et al. Reference Montross, Winters and Irwin2011), which is lower than our average cost of $84. The time required to complete the entire protocol was also similar to one prior study (Bentley et al. Reference Bentley, O’Connor and Williams2020) and less than 3 others (Bentley et al. Reference Bentley, Aoun and O’Connor2012; Hall et al. Reference Hall, Goddard and Opio2012; Kelly et al. Reference Kelly, Kynoch and Ramis2023). A survey of staff who implemented DT previously concluded that DT’s time cost is worthwhile and has a positive impact on palliative care patients (Montross et al. Reference Montross, Meier and De Cervantes-Monteith2013). As reported elsewhere regarding our RCT, the DT intervention led by either chaplains or nurses significantly improved dignity impact compared to the usual care control (Wilkie et al. Submitted/unpublished 2023).
Our study suggests that the benefits of providing spiritual support at end of life with DT outweigh the expenses. As highlighted by Balboni et al., patients who do not receive adequate support for their religious and spiritual needs at end of life are more likely to die in an intensive care unit and less likely to spend the last week of life in hospice care, resulting in increased costs ($4947 vs. $2833). This effect is even more pronounced among racial minorities ($6533 vs. $2276) and those who highly prioritize their religious beliefs ($6344 vs. $2431) (Balboni et al. Reference Balboni, Balboni and Paulk2011). Therefore, our study underscores the importance of interventions like DT that address patients’ spiritual needs and have the potential to reduce end-of-life costs.
Aoun et al. suggested that smaller organizations may find DT implementation impractical due to resource and cost constraints, while larger services can consider offering DT, making it more feasible in terms of costs and resource allocation (Aoun et al. Reference Aoun, Chochinov and Kristjanson2015). A recent study explored new DT delivery methods, like therapist-supported web-based delivery, to reduce time and cost (Bentley et al. Reference Bentley, O’Connor and Williams2020). Therapist time, including interviews, editing, and support, ranged from 3.5 to 13 hours with a mean of 8.5 hours per participant (n = 6), saving time on travel and waiting (Bentley et al. Reference Bentley, O’Connor and Williams2020). Finally, future research may consider the use of a clinician who can bill for their clinical service as a form of therapy, such as psychology or licensed clinical social workers, to offset the expense.
A limitation of our study was the contracted costs for delivery of the DT and editing the transcripts into legacy documents and the resultant lack of precision in the amount of time required for these tasks. Also, the cost of training DT therapists and the research coordinators’ time to recruit, schedule, and facilitate the study were not included in this analysis.
In conclusion, our study sheds light on the practical aspects and expenses involved in implementing DT in palliative care older adults with cancer. The results of our research demonstrate that DT is a relatively low-cost intervention. Future work can explore different modes of DT delivery, dictation methods, student or volunteer involvement, artificial intelligence, and even consider using online international workers to enhance efficiency of DT delivery.
Acknowledgments
The authors thank the patients, clinicians, transcriptionists, editors, and the many research staff members for giving of their time to advance science.
Author contributions
The authors R.A.L.Y., A.P.R., A.S.-J., A.G., Y.Y., T.M.S., G.F., G.H., H.M.C., L.L.E., S.K., and D.J.W. have contributed sufficiently to the project and have met all criteria to be included as authors. R.A.L.Y., A.P.R., D.J.W., and Y.Y. conceptualized this study. Methodology was by D.J.W. and Y.Y. Investigation was done by D.J.W., T.M.S., S.K., G.H., and H.M.C. Visualization was done by D.J.W. and Y.Y. Funding acquisition was done by D.J.W., G.F., L.L.E., and Y.Y. Project administration was done by D.J.W. and Y.Y. Supervision was by A.G., S.K., and D.J.W. Writing – original draft was by R.A.L.Y., A.P.R., S.K., and D.J.W. Writing – review & editing was by T.M.S., L.L.E., G.F., G.H., and H.M.C.
Funding
This research was made possible by grant number 1R01CA200867 from the National Institutes of Health (NIH), National Cancer Institute (NCI), and the National Institute of Nursing Research (NINR). The information in this article is solely the responsibility of the authors and does not necessarily represent the views of the NIH, NCI, or NINR. The final peer-reviewed manuscript is subject to the National Institutes of Health Public Access Policy.
Competing interests
All authors have no relevant financial interest in this manuscript and no activities, affiliations, or relationships to disclose. All authors have not published or submitted any related papers focused on the costs of the intervention model used in this study.
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