Day 3: Applying Dignity Therapy

In dignity therapy, a completed generativity document is passed to the patients so that they can share it with their loved ones. This helps to create a conversation between patients and their family members before the patient’s death. As mentioned in the previous blog entries, dignity therapy provides a platform for individuals to explore their existential achievements and express heart-felt messages to family members or other significant individuals. What happens when the patient does not have a designated recipient for the generativity document?  As Katherine said, “Sometimes people engage in dignity therapy just because they wanted to experience the journey.” The gist of dignity therapy is to provide a platform for patients to review their lives and they do not have to dedicate the document to a specific person per se.

Dr. Lori brought up an extremely important point when it was nearing the end of the training workshop: when we are conducting dignity therapy, we may tend to focus on patients’ lives before they were diagnosed; that may potentially imply that patients are more “valuable” when they were well. Thus, it is crucial to be mindful of our personal biases and acknowledge who patients are and where they are at.

Though dignity therapy question protocol is generally used to promote therapeutic alliance where patients feel they are being treated as a person, it can be adapted in various settings with a tweak in how questions are being asked. For instance, the same protocol had been used in family setting to initiate heart-to-heart conversations between patients and family members without the presence of a dignity therapist; this process was identified as helpful and has been termed as “dignity talk”. Our FDI study has also adapted the question protocol into Asian context, with additional element on family connectedness in reflection of the culture. Stay tune to our website for more updates!

At the end of the training workshop, a treasure box was passed around and we were each invited to take one piece of paper from the box. It was a parting gift made of quotes from patients who have received dignity therapy in the past. Some of the quotes belong to patients who have gone home, and some belong to patients who are still living. Regardless of which, we (referring to the facilitators and workshop attendees) now carry them with us.

It was indeed a fruitful journey traveling to Winnipeg to attend the Dignity Therapy Training Workshop. Though dignity therapy is initially used in palliative end-of-life care setting, its effectiveness and empirical support have sparked great research interests to adopt this therapy across various settings and cultures. Our FDI study is first ever attempt to expand dignity therapy into the Asian context. Informed by a rigorous body of empirical research that examined the meaning and constructs of dignity in Asia palliative care, we are incorporating a number of family-focused and cultural-specific elements into the therapeutic process and question protocol. When one of the training workshop participants asked Dr. Harvey whether he has ever anticipated dignity therapy to draw on such great interest in healthcare and research settings, he humbly said no, yet, such interest should not come as a surprise given the potential benefits dignity therapy offers to patients and families.

It has been a week since I returned from Winnipeg, but I vividly remember Dr. Harvey’s and other dignity therapists’ facial expressions as they were sharing their experiences interacting with patients and family members; there were signs of tears in their eyes reflecting the light from ceiling lights overhead, their faces flushed pink and their gazes wandered into the distant past as they were recalling their memories. Those expressions reflected the mixed feelings they each had in remembrance of the patients and family members they have encountered in the past and present. In my eyes, taking up the role as a dignity therapist and engaging in the therapy process with patients and family members could be one of the significant memories in the facilitators’ lives; I find that beautiful and I wish to embark on similar journey with our FDI research. At the end of my life, I know being part of FDI study and building rapport with the patients and family members will definitely be one of the most significant memories I’ve had. This marks the end of my sharing on my dignity therapy training experience and learning outcomes, but it also signifies the beginning of our FDI journey. Stay tune!

Day 2: Practising Dignity Therapy

In dignity therapy, three types of stories are often shared by terminally-ill patients: (a) happy stories (contain elements of gratitude, experience of love and joy), (b) sad stories (contain elements of personal tragedies, perceived failure, and regrets), and (c) ugly stories (contain elements that may potentially harm the identified recipients). “Not all stories are pretty, and they don’t have to be,” said Dr. Lori Montross Thomas, an assistant professor in the Department of Psychiatry as well as Family and Preventive Medicine at the University of California, San Diego (UCSD).  Generativity documents should contain information uniquely present in a person’s life; the stories being shared could be a mixture of happy, sad, and ugly stories. Dignity therapy provides an opportunity for individuals to reflect upon their less-pleasant stories positively and find meaning in those stories. Ultimately, what we have experienced and how we interpret our experiences shape who we are today; validating those experiences allows us to see who we are in whole, instead of parts of who we are.

That being said, it is crucial to have a safety plan ready at the back of our minds to manage ugly stories. This ensures patients receive adequate care and support in the midst of creating their generativity documents. Dignity therapists are expected to exercise their clinical judgment throughout the therapy process in order to ensure that they do no harm to the patients and also the recipients of generativity documents. For example, when we assess some stories to be potentially harmful to the recipient, it is essential to reflect this to our patients and process with them the suitability and beneficence of adding such content into their document. This offers opportunity for patients to re-examine their documents and promotes patients’ sense of control by giving them the options of what stories can be included or excluded from their documents. In view of the principle to do no harm, dignity therapists are NOT obliged to deliver harmful messages to recipients.

Given that the nature of dignity therapy revolves around reviewing one’s past experiences, it does not come off as a surprise that patients feel overwhelmed in the midst of recalling unpleasant memories, particularly the sad or ugly stories. In such situations, dignity therapists may put the session on hold and proceed with providing support via counselling or psychotherapy. Dignity therapy does not have to be completed within a session. If patients are feeling overwhelmed due to the stories being shared or feeling fatigue due to their medical conditions, dignity therapists are recommended to take a break or schedule a different session before resuming the process when patients are feeling better.

Like many other therapeutic relationships in counselling and healthcare settings, dignity therapists are seen as experts and may often be perceived as a figure of authority holding greater power in compared to patients themselves. Therefore, it is important to be mindful of our power in the relationships when conducting dignity therapy so that the process can be therapeutic for patients and even family caregivers. We can address our power in the relationships by being upfront about it from the beginning of the session, highlighting that patients and family caregivers are the experts of their respective life, not us; doing so empowers patients and family caregivers to share their stories and perspectives without the concerns of being judged or being in the wrong. Since the focus of dignity therapy is ultimately on constructing the content of generativity document which will be passed on to identified recipients, it is therefore crucial to be mindful of our personal agenda versus the patients’. For dignity therapists who come from counselling, psychology, or social work backgrounds in particular, it can be a delicate balance between completing the generativity documents as per patients’ identified goals versus engaging patients to address their emotional experiences in the midst of reviewing their lives. Time is limited. When dealing with patients who are receiving palliative end-of-life care, we ought to prioritize short-term dignity therapy goals in which they could benefit from instead of long-term psychotherapy goals.

In order to facilitate our understanding of the dignity therapy process, we were asked to pair up to engage in role play, where we took turns to play the role as a therapist and subsequently as a patient. I chose to pair up with Geraldine as we have a strong rapport and I was comfortable enough to share some of my stories with her (to make the role play more genuine), including the sad stories. That experience truly opened my eyes. As Geraldine gently took me on a journey in reviewing glimpses of my life thus far, I have surprisingly uncovered the significant events I held close to my heart. It was a mixture of happy and sad stories, weaving into the themes of resiliency, social support, and a pursuit of dreams.  The journey was relatively short, approximately 20 minutes; nevertheless, it was indeed thought provoking, and it strengthened my sense of purpose in life. When I took on the role as a therapist, I struggled to find that balance between focusing on the content of generativity document versus processing Geraldine’s disclosure from a psychotherapy perspective. Despite that struggle, I was able to connect with Geraldine as she was sharing her stories. That connection was beyond words, and I look forward to experiencing more therapeutic alliance as such during our upcoming FDI intervention phase.

When it comes to editing and producing the generativity document, it is important to retain the voice of dignity therapist (also known as interviewer in the document) in order to provide a context on the content. Clinical judgment needs to be made to what extent a dignity therapist would include their exchange with patients in the document. Dignity therapists need to keep the patients’ voices in their heads as they are doing the editing, and constantly reflect on how the recipients would receive the messages; doing so ensures the genuineness of said generativity documents. We were also given the opportunity to edit a generativity document as part of the experiential activities. In my perspective, it is easy to edit a normal document but it is challenging to edit a generativity document while making sure that it still “sounds” like the patient at the end. Nevertheless, the end results would be satisfying, existentially speaking.

Day 1: Understanding Dignity Therapy

Dignity therapy is essentially an empirical-based intervention adopted in palliative end-of-life care setting with the intention of decreasing patients’ suffering and bolstering their sense of meaning, purpose, dignity, and quality of life. “Psychology of illnesses is associated with psychology of losses,” said Dr. Harvey as he walked us through the key elements of dignity therapy. Through various research findings and clinical examples, we have come to understand that losing functional abilities often associates with sense of being out of the norm, which then evokes sense of social shame and subsequently diminished dignity. Us, human beings, constantly seek for affirmation through the eyes of our beholders as a reflection of our existence and purpose. We seek to be treated as a whole person even in our final days, and dignity therapy offers just that through understanding the person as who they are, who they were, and what they would like to share with us.

After going through the theoretical groundwork of dignity therapy, the subsequent training workshop sessions focused on the technical aspects. Dignity therapists would go through a series of baseline questions first during the initial interview (Note: this process is also known as “framing history”) such as how patients would like to be addressed, basic demographic information, their purpose of doing dignity therapy, who the identified recipients are etc. This information provides a metaphorical frame within which the dignity therapy interview paints the detailed picture. A copy of the question protocol is given to patients for review prior to the subsequent dignity therapy session. During the dignity therapy session, dignity therapists would explore items highlighted in the question protocol, or address items stood out to patients the most.

Given that patients are in palliative end-of-life care setting, it does not come off as a surprise that patients experience exhaustion or feel unwell during the session. In such situations, dignity therapists may reschedule and resume the session when patients are in a better state and capable of engaging in insightful reflection. Dignity therapists would then proceed with the interview transcription and editing (Note: the edited transcript will be known as “generativity document”) prior to meeting up with patients subsequently to review the document. Patients are allowed to add more stories to or remove stories from the generativity document during the review session before finalizing it. The finalized generativity document will then be given to patients before sharing it with identified recipients. Due to the time sensitivity nature of palliative end-of-life care setting, this entire process should take approximately two weeks, though it may vary depending on patients’ health and the number of edition required prior to finalization. I will elaborate on the technical components in greater detail through the subsequent entries.

I particularly liked how Dr. Harvey used the term “existential readiness” to address individuals who are more likely to be willing to take on dignity therapy and benefit from it. In his words, existential readiness is when a person is ready to explore and review their (Note: gender neutral pronoun is adopted here) sense of existence and lifetime accomplishments. “Dignity therapy is not for everyone; not everyone is ready for and would benefit from it,” said Katherine Cullihall, a research nurse in the Research Institute of Oncology and Hematology (Patient Experience) at CancerCare Manitoba. In her elaboration, patients may not be ready to take up dignity therapy, especially during the first phase of diagnosis because they may need time to process and accept their diagnosis before they feel ready. However, it is acceptable to let them know that dignity therapy service is available for them should they feel ready to talk about it.

Our attention was then directed to this specific question as we were going through the question protocol. “Looking back at your life, when did you feel most alive?” It was a simple question, and yet it resonated in my heart with great intensity. As we live our lives, we often forget how time would pass us by regardless of where we are and what we do; it is unbelievably easy to take our roles and each passing moment for granted. This question, however, creates an opportunity for us to pause and think, “when do I feel most alive, really?” As it brings our attention to what matters the most, we are also given the opportunity to reflect upon the meaning and purpose of our existence, reminding us of who we are.

“Looking back at your life, when did you feel most alive?”

Before It All Begins

In Singapore, demand for palliative care has surged over the past decade and will continue to rise in the future under the context of population ageing. However, most palliative interventions still focus predominately on pain and symptom management without addressing psycho-socio-spiritual concerns. In addition, there is no available palliative care intervention for dignity enhancement in the Singapore to date, and little has been done with the Asian population. Building on our empirical foundations and expertise in dignity and dignity therapy, we have set off to develop and test a novel Family Dignity Intervention (FDI) for older Asian terminally-ill patients and their family caregivers. The FDI will emphasize on dyad work to strengthen family connectedness and cultivate filial compassion by providing a platform for expressions of appreciation, achieving reconciliation, and passing on transcendental wisdom and values across generations.

Though the FDI design and its intervention protocol are fundamentally based on the original dignity therapy, they are different in the sense that FDI focuses on the family as a collective unit (i.e., patients and family caregivers) in creating the legacy document while dignity therapy focuses on individuals (i.e., patients themselves). Nevertheless, it is crucial for us to gain in-depth understanding on dignity therapy prior to commencing our FDI study. In preparation for our FDI study, my fellow Research Associate, Geraldine, and I were sent by the Nanyang Technological University (NTU) of Singapore to attend the Dignity Therapy Workshop held in Winnipeg, Canada. The training workshop was led by Dr. Harvey Chochinov, our international collaborator, and a team of experienced dignity therapists. It was truly exciting to think about the potential learning outcomes, networking opportunities, and inspirations that would transpire from those interactions.

Prior to attending the training workshop, I found dignity therapy to be an empowering intervention as it offers a platform for patients to review their lives and reflect on their existential accomplishments (e.g., personal identities and social roles, personal achievements, life experiences and memories, interpersonal relationships). Coming from a counselling psychology background, I have received training in assisting individuals to (a) explore their past unfinished business and current struggles, (b) gain further understanding in regards to their thought processes and emotional experiences, and (c) elicit some form of change and achieve healing. Dignity therapy, however, steers the exploration in a different manner. The question protocol takes on a strength-based approach, where the questions were designed to empower patients by validating their existential accomplishments and allowing them to express heart-felt messages for their loved ones via a generativity document. Despite the different approaches, therapists practising dignity therapy and/or other psychotherapies aim to create a safe space where individuals are seen as a person and able to share their stories without the concerns of being judged.

After attending the training workshop, I have come to understand dignity therapy on a deeper level and also appreciate its flexibility in adaptation across settings and cultures. I have summarized the gist of my training experience and learning outcomes in the following entries, hoping to share my excitement of embarking on this journey with you.