Hospice Staff Perspectives on Dignity Therapy

Abstract

Background

Dignity Therapy is a brief psychotherapy performed with patients at the end of life. Previous research has examined the effects of Dignity Therapy with patients and family, but none has examined hospice staff perceptions of the treatment.

Objective

The study objective was to investigate hospice staff perspectives regarding the impact and value of Dignity Therapy when provided as a clinical service.

Methods

Eighteen hospice staff members who referred patients for Dignity Therapy were asked to rate the value of the treatment. The staff also completed qualitative interviews to gather more detailed information about their most common reasons for referral; their perspectives regarding the therapy's impact on patients; and their beliefs about the costs, benefits, and barriers to treatment. The staff interview responses were qualitatively analyzed to measure the most common emergent themes.

Results

Hospice staff members rated Dignity Therapy as worthwhile, and somewhat able to reduce patients' pain and suffering. The vast majority (92%) of hospice staff members believed the treatment would help patients' families in the future, and 100% reported a desire to recommend the treatment to others. Qualitative analyses revealed that staff commonly viewed Dignity Therapy as a positive, affirming experience for patients and felt the emotional or time requirements of the treatment were justified. As a result of offering the service, the staff noted an increased connection with patients and related increases in job satisfaction.

Conclusions

Hospice staff believe Dignity Therapy is a worthwhile service that offers a positive, quality-enhancing experience for patients at the end of life. The addition of this clinical service may further enhance staff members' job satisfaction and connection with patients. These findings provide useful information for clinicians or organizational leaders who consider offering Dignity Therapy in their setting.

Introduction

Several psychotherapies have been designed for use with patients at the end of life. Many aim to decrease suffering, while others focus on enhancing patients' experiences individually and with their families.^1–3 Dignity Therapy is one brief, individualized psychotherapy designed to address the emotional and existential needs of adults at the end of life. In Dignity Therapy, patients complete a life reflection interview that captures their fondest memories, their most important accomplishments, the lessons they have learned in life, and any hopes and dreams they have for their loved ones in the future. This life reflection interview is recorded, transcribed, and edited to create a formalized “legacy document,” which is given to the patient as a gift, and can be bequeathed to family and friends as a keepsake.

Previous studies have examined the effects of Dignity Therapy among patients and family members.^4–6 Patients report being highly satisfied with Dignity Therapy, noting its value and ability to enhance dignity.^4–6 In addition, family members report it may help patients prepare for death, decrease their suffering, and substantiate the value of their lives.⁵

Although previous research has examined the effects of Dignity Therapy with patients and families, none have investigated hospice staff perspectives. This study is derived from the first site in the United States to offer Dignity Therapy as a formal clinical service, therefore being able to sample hospice staff perspectives regarding its practice. Specifically, this study asks, according to staff, How does Dignity Therapy impact patients and families? Does it meet staff expectations? Does the therapy deliver the desired patient outcome? In sum, the aim of the current study is to examine hospice staff perspectives regarding the impact and value of Dignity Therapy as a clinical service.

Methods

The study was completed at the San Diego Hospice and The Institute for Palliative Medicine where Dignity Therapy was initiated as a clinical service in 2009. San Diego Hospice and the Institute for Palliative Medicine is a nonprofit hospice founded in 1977, providing care to more than 700 terminally ill patients per day, employing over 650 staff and 600 volunteers. Between the inception of Dignity Therapy at San Diego Hospice to the time of the current study's data collection, 63 patients completed Dignity Therapy. Further details of this clinical service implementation have been reported previously.⁷ For this study, 18 interdisciplinary hospice staff members who had referred at least one patient for Dignity Therapy completed an individual interview. These staff included seven social workers, four chaplains, four registered nurses, two integrative medicine practitioners, and one psychiatrist. The staff had seven years of hospice experience on average (range 1–25 years).

During the interview staff members were asked to provide ratings on the following questions: (1) to what extent they felt the treatment was worthwhile, (2) helpful, (3) able to reduce patients' pain and suffering; (4) whether the treatment would help family members in the future; and (5) whether the staff would recommend the treatment to others. These are the questions previously asked in other Dignity Therapy research samples with patients and families.^4–6 The five-question ratings took approximately five minutes to complete. In the remaining interview time, each staff member qualitatively responded to semistructured questions in the following areas: (1) reasons for the Dignity Therapy referral, (2) perceived costs and benefits to patients when completing Dignity Therapy, (3) how they would describe the therapy to others, (4) how they felt about Dignity Therapy being offered as a service, and (5) any other information about the topic they wished to provide.

Analyses

The five-question ratings of Dignity Therapy among the 18 staff were compiled and the frequencies analyzed to produce mean scores with standard deviations. The semistructured qualitative interviews from the staff were audiorecorded and transcribed verbatim. Using the method of Coding Consensus, Co-occurrence, and Comparison,⁸ two study investigators independently reviewed all of the qualitative responses. The investigators subsequently used a consensus process to identify the general themes, and a coding matrix was developed based on the identified themes. This matrix was used to analyze all responses independently at a paragraph level, with multiple codes being utilized if numerous themes were present. After independently coding all responses, two investigators discussed each code, with disagreements in code assignment being resolved by consensus. Each code was then entered into QSR International's NVivo9 qualitative data analysis software to compile the frequencies of each coding theme. Responses were categorized thematically, and salient quotations were selected to exemplify emergent themes.

Results

Quantitatively, staff members rated the treatment as worthwhile, helpful, and somewhat able to reduce patients' pain and suffering. The vast majority believed the treatment would help patients' in the future, and all would recommend the treatment to others (see Table 1).

Table 1.

Ratings of 18 Hospice Staff Involved with Dignity Therapy at the San Diego Hospice

Treatment was worthwhilea	Treatment was helpfula	Treatment reduced pain and sufferinga	Treatment will help the family in the futureb	Would recommend the treatment to othersb
X=3.83 (SD=0.39)	X=3.85 (SD=0.39)	X=3.42 (SD=0.67)	92%	100%

^aReports made on a 0–4 scale; 0=not at all, 4=very much.

^bPercentage of combined “quite a bit” or “very much” responses.

During qualitative interviews, 83% of the staff reported referring for Dignity Therapy because it allowed patients the chance to reflect on their lives, providing an existential opportunity to share their stories and lessons.

“Dignity Therapy is a process of going inside and looking at life. Seeing what the patient has done—the beauty, the accomplishments, the challenges and the mistakes.”

“Dignity Therapy helps round out patients' ideas about the meaning and purpose in life.”

Staff then spoke of how Dignity Therapy affirmed the values and beliefs of patients (50%), how it gave purpose to patients' lives by providing a new mission (50%), and how the therapy provided a positive, healing experience for patients (83%).

“The main benefit is that Dignity Therapy gives the patient a chance to look back at their life and really see the positive. I think that's what it is…it pulls out the positive aspects and lets them see what's truly important.”

“It's easy to overwhelm hospice patients when we focus on symptoms or final arrangements, but Dignity Therapy isn't like that. It's a very peaceful place that is not about any of that stuff. It's just about the patient and what they want to say about their life. It lets them refocus on what gifts they can give back…how they can still contribute and be useful.”

“The benefits were having the actual legacy document afterward, and having the time to reflect. The reflection tended to be, even under the weird circumstances, a really positive thing. People were happy to see what they had actually done in their lives.”

Fourteen staff members had patients who consented to share their finished Dignity Therapy documents with the team. This allowed for a unique perspective from staff who had not only referred patients for treatment, but who were able to read patients' completed legacy documents. These staff spoke of the increased job satisfaction and enjoyment they experienced when reading finished Dignity Therapy documents, and how that opportunity furthered their connection with patients.

“I got more than a little misty eyed when reading Lucy's story. It was beautiful…such a gift.”

“After reading the patient's story, I realized this man was even more colorful than I thought!”

When asked about the “costs” of Dignity Therapy, 78% of staff believed the amount of time required to complete the process was a cost. However, 94% of staff believed this time was well spent, and felt the emotional expenditure was worthwhile.

“The benefits far outweigh any little bit of draining that might result from the work.”

“I always feel so proud to introduce Dignity Therapy to our patients.”

“It's always such a delight to share a bit about Dignity Therapy, as I've seen how very life-giving it is for our dear patients.”

Finally, staff members were asked about any barriers they experienced when attempting to initiate Dignity Therapy with patients. The majority of staff (83%) noted the need to reassure patients that the service was voluntary, and to convey respect if the patient chose not to engage in treatment. A fluctuating interest in Dignity Therapy due to patients' mood changes, health instability, increasing pain, or altered family dynamics was also reported (39%). Thus, a strong rapport between staff and patients was noted in order to facilitate the referral process (28%). Regardless of any difficulties, staff frequently endorsed the desire to expand Dignity Therapy further so as to benefit more patients on service (72%).

“I would definitely promote it. I would definitely offer it, suggest it, even if the patients are not on my team, I would talk to other nurses about it.”

“I wish we could have more patients get into this.”

“The value is immeasurable. Many personal values are returned to patients with Dignity Therapy like: self-respect, integrity, family, affection, security, recognition, accomplishments, etc. I love it!”

Summary

Staff members believed Dignity Therapy was a worthwhile service, with all staff reporting they would recommend it to others. Staff members focused on how the service offered a positive, quality-enhancing experience for patients at the end of life. The staff also reported the service increased their connection with patients. Future studies can investigate Dignity Therapy's potential to increase positive indicators for patients, such as life closure, contentment, gratitude, and connectedness with family, as well as the ability to enhance staff members' overall job satisfaction.

Acknowledgments

Part of this study was made possible by an NIH grant to the University of California, San Diego: UL1 RR031980, Clinical and Translational Research Institute.

Author Disclosure Statement

No competing financial interests exist.