Introduction
Dignity can be defined as the quality of being worthy of honor or respect. The concept of dignity is one of the central pillars of holistic medicine and is often described as an integral part of what it means to be human. The undermining of dignity has been associated with depression, desire for death, and a loss of hope among patients with life-threatening and life-limiting conditions. Over the last 20 years, there has been significant scientific investment in clarifying and implementing dignity-conserving care (Chochinov, Reference Chochinov2002). The qualitative work by Chochinov et al. (Reference Chochinov, Hack and McClement2002) regarding the concept of dignity led to the creation of the Model of Dignity of the terminally ill, which offered essential insights into how patients face terminal illness in terms of illness, social, and personal-related factors. This model was the basis for the creation of dignity therapy (DT), a brief, individualized intervention, which provides terminally ill patients with an opportunity to convey memories, essential disclosures, and prepare a generativity document, addressing psychosocial and existential issues, bolstering a sense of meaning and purpose.
DT has been successfully tested and developed in many countries such as Canada, Australia, Scotland, Portugal, England, Spain, Denmark, and USA (Chochinov et al., Reference Chochinov, Hack and McClement2002, Reference Chochinov, Hack and Hassard2005, Reference Chochinov, Hassard and McClement2008, Reference Chochinov, Kristjanson and Breitbart2011; Hall et al., Reference Hall, Goddard and Opio2012; Julião et al., Reference Julião, Barbosa and Oliveira2013, Reference Julião, Oliveira and Nunes2014, Reference Julião, Oliveira and Nunes2017; Houmann et al., Reference Houmann, Chochinov and Kristjanson2014; Johnston et al., Reference Johnston, Lawton and Pringle2015, Reference Johnston, Lawton and McCaw2016; Rudilla et al., Reference Rudilla, Galiana and Oliver2016). Robust quantitative research demonstrates DT's efficacy on several outcomes such as sense of dignity, quality of life, depression, anxiety, desire for death, and demoralization (Julião et al., Reference Julião, Barbosa and Oliveira2013, Reference Julião, Oliveira and Nunes2014, Reference Julião, Oliveira and Nunes2017); and a recent literature review reinforces DT's overwhelming acceptability among patients and loved ones, rare for psychosocial-spiritual interventions (Fitchett et al., Reference Fitchett, Emanuel and Handzo2015). DT is also one of the few evidence-based psychotherapies available to people in the last months of life.
Although there are a large number of papers using quantitative methods to assess DT's efficacy, across several psychosocial outcomes, qualitative descriptions of themes emerging within generativity documents are still lacking (Goddard et al., Reference Goddard, Speck and Martin2013; Dose and Rhudy, Reference Dose and Rhudy2018; Testoni et al., Reference Testoni, Bingaman and Dlapico2019). The latter provides opportunities to explore further and better understand the perspectives of people regarding their end-of-life experience (Johnston et al., Reference Johnston, Lawton and Pringle2015; Dose and Rhudy, Reference Dose and Rhudy2018). A study by Hack et al. (Reference Hack, McClement and Chochinov2010) reported qualitative analysis of 50 generativity documents, showing that DT serves to provide a safe, therapeutic environment for patients to review the most meaningful aspects of their lives in such a manner that their core values become apparent. Their findings show that dying patients commonly used DT as a mean to affirm significant others and to express wishes and gratitude toward others. The most common values expressed included “family,” “pleasure,” “caring,” “a sense of accomplishment,” “true friendship,” and “rich experience.” As part of a feasibility study of implementing DT for patients receiving hospice care, Montross et al. (Reference Montross, Winters and Irwin2011) performed the qualitative analysis of 27 generativity documents, and 11 themes emerged. Documents showed that all of the patients used the opportunity to discuss their pertinent autobiographical information, loved ones they had experienced in life, and the lessons they had learned along the way. The majority of patients also discussed their defining roles, accomplishments, character traits, unfinished business, hopes and dreams for others, and times that were important.
Another study by Johnston et al. (Reference Johnston, Lawton and Pringle2015) analyzed generativity documents from people with early-stage dementia using framework analysis. Main themes from the analysis were the “origin of values,” “essence and affirmation of self,” “forgiveness and resolution,” and “existentialism/meaning of life.” Each of these categories can contribute to the care and support of people with dementia, providing vital information to enable connections to be established or continued. Even when communication ability diminishes and cognition is compromised, healthcare providers should prioritize, promote, and safeguard human dignity.
Following the quantitative analysis of the Portuguese randomiszed controlled trial (RCT) on DT's efficacy in palliative care patients (Julião et al., Reference Julião, Barbosa and Oliveira2013, Reference Julião, Oliveira and Nunes2014, Reference Julião, Oliveira and Nunes2017), the authors decided to analyze the generativity documents resulting from DT. We aimed to use qualitative methodology to extract the main themes emerging from 17 generativity documents, in order to gain a deeper understanding of the value of using DT for people who have life-limiting disease. The question guiding the qualitative work of the study was: can the thematic features of generativity documents provide a deeper understanding of the value of using DT for people who have a life-threatening disease?
Methods
Study design
Generativity documents from a phase II nonblinded RCT were subjected to qualitative analysis (Julião et al., Reference Julião, Barbosa and Oliveira2013, Reference Julião, Oliveira and Nunes2014), applying inductive content analysis. Inductive content analysis is an ideal research method for approaching largely unknown phenomena (Kyngas, Reference Kyngas, Kyngas, Mikkonen and Kaariainen2020). This approach was deemed suitable, given that few studies have examined this particular issue (Kyngas, Reference Kyngas, Kyngas, Mikkonen and Kaariainen2020). This approach allowed us to discern what is most salient under the rubric of generativity for patients nearing death (Starks and Trinidad, Reference Starks and Trinidad2007). It also enabled us to understand and explore various dimensions of the shared narrative voiced by this cohort of dying patients. The theoretical underpinning for this study was based on Erikson's (Reference Erikson1963) theory of psychosocial development and, in particular, generativity. According to this theory, leaving a legacy is an important part of generativity for individuals nearing death. Our study contributes to individual generativity by way of facilitating the creation of legacy documents.
Our study received ethical approval from the Ethics Committee of the Instituto das Irmãs Hospitaleiras do Sagrado Coração de Jesus – Casa de Saúde da Idanha and from the Ethics Committee of the Faculty of Medicine of the University of Lisbon.
Participants and setting
Purposive sampling was undertaken with adults who had a life-threatening disease. Patients were recruited for the RCT from an inpatient palliative medicine unit in Lisbon, over 36 months. We used the following inclusion criteria for the RCT: 18 or more years of age; having a life-threatening disease with a prognosis of 6 months or less; no evidence of dementia or delirium, determined by chart review or clinical consensus of the palliative care team; Mini-Mental State score 20 or more; ability to read and speak Portuguese; ability to provide written informed consent; and able to take part in four to five research encounters over a period of 1 month.
Data collection
Patients enrolled in the DT group were guided through a conversation by a trained DT therapist, in which aspects of their lives that they would most want their loved ones to know about or remember were audio-recorded. These recorded sessions provided the basis of an edited transcript or generativity document, which was returned to patients for them to share with individuals of their choosing, within two to three days after the therapeutic session occurred. As is usual in DT, the participants were able to add information to the generativity documents they received from the researchers during the feedback phase. Therapeutic sessions, usually running between 30 and 60 min, were guided using the Dignity Therapy Question Framework (DT-QF) comprised of nine questions based on the fundamental tenets of the Dignity Model (Table 1),. The DT-QF is not intended to be rigid or prescriptive. Each question is meant to elicit some aspect of personhood, provide an opportunity for affirmation, or help patients reconnect with elements of self that were, or perhaps remain, meaningful or valued. The DT-QF provides a flexible structure, within which patients are able to share memories, guidance, and wisdom with those they are about to leave behind. Trained therapists have the latitude and responsibility to explore legacy-related issues, as dictated by the needs and goals of each individual patient. Before performing DT, patients were provided with the DT-QF, thus giving them time to reflect and shape their eventual responses. All DT sessions were conducted according to guidelines described and published by Chochinov (Reference Chochinov2011) and were completed by the principal investigator (M.J.), an experienced DT therapist and researcher. Field notes were not collected.
Table 1. DT question protocol
Data analysis
Generativity documents were iteratively analyzed by applying inductive content analysis. Inductive content analysis is an ideal research method for approaching largely unknown phenomena (Kyngas, Reference Kyngas, Kyngas, Mikkonen and Kaariainen2020). In this study, inductive content analysis was used, given that few studies have examined this particular issue (Kyngas, Reference Kyngas, Kyngas, Mikkonen and Kaariainen2020). Data saturation was reached after coding 15 transcripts, with two additional transcripts were analyzed to confirm identified themes and codes.
To ensure the trustworthiness of data analysis, we used a team of two independent coders (A.R.L., S.A.). None had a relationship with the principal investigator or with the patients during the trial period. A.R.L. and S.A. had expertise in qualitative methods and began their initial approach by reading the literature on the Model of Dignity of the terminally ill, DT, and the DT-QF that supports DT sessions, and also research reporting qualitative analysis of generativity documents derived from DT. After doing so, they developed a preliminary coding scheme based on the content and fundamental aspects of DT, including codes that captured key themes such as pride, core values and roles, hopes, dreams, and messages for others.
An independent iterative coding was created, based on a subset of five randomly selected generativity documents. If necessary, new codes were added to reflect new emergent categories as well as looking for redundancies or overlaps. After finishing the initial coding, A.R.L. and S.A. completed coding independently.
Code labels were continuously compared and discussed in successive research meetings to determine the extent of coder agreement and coding framework update. Emerging disagreements were first discussed between the two coders until final consensus was reached. The percent agreement among the codes ranged from 50 to 100%, with an average agreement of 78.6%. If needed, a third researcher (M.J.) was available to resolve any discrepancies. No qualitative data analysis software was used in this study. The Consolidated Criteria for Reporting Qualitative Studies (COREQ) framework was used to report the design, analysis, and findings of our study (Tong et al., Reference Tong, Sainsbury and Craig2007).
Results
Participants’ characteristics
In total, 39 terminally ill patients received DT, 17 of whom gave written consent for their generativity document to be qualitatively analyzed. There were nine female and eight male participants, aged ranging from 49 to 79 years. The majority of participants were married and Catholic. All patients had cancer diagnosis, and the average time since diagnosis was 4.4 years. Participants’ characteristics are further presented in Table 2.
Table 2. Summary characteristics of participants (N = 17)
SD, standard deviation.
a Ovarian, n = 4; lung, n = 3; breast, n = 1; colon, n = 1; esophagus, n = 1; glioblastoma, n = 1; multiple myeloma, n = 1; prostate, n = 1; skin, n = 1; stomach, n = 1; tongue, n = 1. Metastatic tumors n = 10.
b Palliative Performance Scale scores: 100% = healthy, 0% = dead.
Generativity documents’ analysis
The final code-book contained 43 codes and seven main themes: “Significant people and things”; “Remarkable moments”; “Acknowledgments”; “Reflection on the course of life”; “Personal values”; “Messages left to others”; and “Requests and last wishes”.
Table 3 presents the seven themes and codes (with the respective percentage of patients describing each code). After 15 transcripts had been coded, no new codes emerged, i.e., thematic saturation was reached.
Table 3. Themes and codes developed from dignity therapy generativity documents (n = 17)
a Percentage of patients endorsing code.
Theme 1: Significant people and things
Six participants highlighted the role of their wives or husbands as life partners, identifying the moment they met marking the beginning of happiness, as two participants revealed:
“My wife gave me the guidance I needed. I became happy, very happy.” (#TD13)
“I became happier after meeting my wife.” (#TD28)
Participants identified that if they had to choose a picture that represented their lives, it would include their family. Two participants narrated the following:
“If a photo album represented my life,
I would choose a photo with my daughters.”(#TD23)
“It would begin [the photo album] with a beautiful and serene picture in which my husband and my children would represent the people I keep forever with me.” (#TD20)
Theme 2: Remarkable moments
Regarding the most remarkable moments in their lives, participants identified their childrens’ birth (n = 8) and their marriage (n = 5). Participants seemed to agree that these two moments fulfilled their lives and represented the starting or turning point for building happy families.
“One of the most important moments of my life was my marriage.” (#TD01)
“I became a happy, accomplished and complete man when I got married. […]
The birth of my sons completed me.” (#TD47)
Theme 3: Acknowledgement
Seven participants acknowledged the support and presence of their family, mostly their children and spouses within their generativity document. Their acknowledgment went beyond their current presence during their illnesses and extended across their lifetime.
“I owe him the constant presence, the permanent support.
Always here, always with me, always with us.” (#TD01)
“I miss my husband, and I thank him with all my heart for the true man he has always been to me since the first day we met.” (#TD01)
“I thank my sons for being with me, always with me” (#TD24)
Theme 4: Reflection on the course of life
Through the DT question framework, patients were asked to reflect on their personal biography. Seven participants identified they were proud of their professional roles, mentioning that they worked hard and honestly during their life. The parental role was also highlighted by seven interviewees, in which participants noted that they were proud of their children.
“I am proud that I have always worked without asking anything from anyone.” (#TD23)
“I am proud of my professional role because I have always performed it honestly.” (#TD02)
“I am proud of my daughters.” (#TD23)
“I feel proud of my role as a father.” (#TD30)
Six participants revealed that they were proud of their life, what they did, and what they achieved:
“I am proud of who I am.” (#TD26)
“Looking at what I am and what I have been,
I can say this about myself: I am a ‘great woman’.” (#TD01)
Theme 5: Personal values
Throughout the generativity documents, participants mentioned some personal values that accompanied them throughout their lives; six mentioned honesty (mostly associated with their profession); four, altruism and two, religious devotion.
“I worked honestly and I got two jobs.” (#TD01)
“I am proud to have been promoted professionally with great honesty.” (#TD24)
“I think helping others was always a very important part of my life.” (#TD47)
“Through suffering I feel more alive. I grow when I suffer, I approach God and draw a lesson from suffering: there is always a meaning […] on our journey towards the Light.” (#TD01)
“I want to tell you that I love you all very much […]
And if I left you anything of my inheritance, I would say the following words: Simplicity, leaving things behind, being at peace and tranquillity with God and Humanity.” (#TD05)
Theme 6: Messages left to others
Participants also expressed the need to leave a message to others, especially to loved ones. Most patients (n = 11) wished to leave a final message expressing love and affection to their family, mostly their sons and spouses. Some participants (n = 6) also left a broader message wishing peace and tranquillity to the whole world.
“I want you to know that I will always be with you and that I love you!
That I simply love you!” (#TD01)
“I have nothing else to say except I love her.” (#TD13)
“Honestly, I want, from the bottom of my heart, Peace and Happiness for all of us!” (#TD50)
Theme 7: Requests and last wishes
The main requests or wishes expressed by the participants were related to happiness (n = 5) and health (n = 4). In other words, what participants wanted most for their loved ones, especially their families, was happiness and good health.
“I wish you health and happiness. In fact … I wish it to everyone.” (#TD16)
“I wish happiness to my sons and family. I wish happiness to all my friends.
I wish happiness to the whole world.” (#TD20)
Discussion
The purpose of this paper was to explore the thematic features of generativity documents, providing a deeper understanding of the value of using DT for people who have a life-threatening disease. Seven main themes were identified from the inductive content analysis, including “significant people and things,” “remarkable moments,” “acknowledgments,” “reflection on the course of life,” “personal values,” “messages left to others,” and “requests and last wishes”. Our findings suggest that exploring thematic features of the generativity document can help us recognize and understand patients’ values, wishes, preferences, and needs, facilitating the delivery of dignity-conserving care and higher quality healthcare for patients nearing the end of life.
In this study, we found that “significant people and things” included family members and friends, or books, respectively; and, “remarkable moments” consisting of precious moments with loved ones, childhood memories, or recollections of living in a state of good health. Patients highlighted that the most precious memories in their life were their children's birth or their marriage. Knowing these pivotal moments provides healthcare providers a sense of who their patient is as a person, rather than being understood solely based on their life-limiting condition (Dönmez and Johnston, Reference Dönmez and Johnston2020). Previous research shows that people who have a life-threatening disease usually change their priorities and perspectives on life (Andersson et al., Reference Andersson, Hallberg and Edberg2008; O'Gara et al., Reference O'Gara, Tuddenham and Pattison2018; Dönmez and Johnston, Reference Dönmez and Johnston2020). When people are facing death, basic things such as spending time with family or friends often become more essential than extrinsic aspirations such as acquiring wealth or vocational pursuits. Therefore, inquiring about and exploring “remarkable moments” and “significant people and things” at the end of life allow patients to assert personhood, hence bolstering a sense of well-being (Cottingham et al., Reference Cottingham, Cripe and Rand2017). DT is one approach whereby health professionals can support people who have a life-threatening disease, helping them explore the most important things in their life. Furthermore, this approach may help them to live in the moment “in order to help facilitate a dignified quality of life and help people cope with the uncertainty of life by providing person-centred care for people nearing the end of life” (Dönmez and Johnston, Reference Dönmez and Johnston2020).
DT and the qualitative analysis of the generativity document also saw the emergence of additional themes, including “personal values” and “reflection on the course of life”. These are important in that they help patients express who they are; rather than being defined on the basis of whatever ailment has brought them to the brink of death. Being appreciated as such is the philosophical underpinning of “person-centered care” and a central concept in palliative care (Kitwood, Reference Kitwood1997). An individual's characteristics, including their past, roles, self-worth, values, and spirituality, are vital elements of personhood (Buron, Reference Buron2008).
In this study, despite advanced cancer, participants expressed a sense of pride in the parenteral roles, professional roles, other achievements; as well as their personal values included honesty, altruism, and religious devotion. Cumulatively, these results help increase healthcare providers’ insight into patient perspectives, values, and personal make-up, enabling the delivery of dignity-conserving palliative care. Furthermore, recognizing and understanding that all individuals have a unique and distinct personality, personal history, values, and needs are important to help them maintain their personhood when facing death (Dönmez and Johnston, Reference Dönmez and Johnston2020).
Another theme in this study was “requests and last wishes” and “messages left to others”. These are consistent with the theme of “aftermath concerns” contained within the Model of Dignity in the terminally ill (Chochinov et al., Reference Chochinov, Hack and McClement2002), and speaks to the lingering burden that one's death will have on those left behind. Exploring these themes can be key in helping patients safeguard the well-being of their soon to be bereft loved ones and to resolve any unfinished business (Johnston, Reference Johnston2010; Johnston et al., Reference Johnston, Östlund and Brown2012). Previous research shows that “resolving unfinished business” is an essential core component of a good death (Yun et al., Reference Yun, Kim and Sim2018). Moreover, supporting people nearing the end of life to achieve their wishes and leave messages to loved ones, by listening with compassion and helping them set realistic goals, may contribute to well-being at the end of their life (Johnston, Reference Johnston2010; Johnston et al., Reference Johnston, Östlund and Brown2012).
Findings in this study are consistent with other qualitative studies, which have similar objectives with our study (Goddard et al., Reference Goddard, Speck and Martin2013; Johnston et al., Reference Johnston, Lawton and Pringle2015; Dose and Rhudy, Reference Dose and Rhudy2018; Testoni et al., Reference Testoni, Bingaman and Dlapico2019). In these studies, the researchers highlighted that the generativity documents are an important tool to recognize and understand individuals’ preferences, needs, and values and to deliver dignified high-quality care at the end of life. Each participant's narrative is essential in understanding their identity, values, and purpose. Eliciting this narrative can facilitate patients’ search for meaning, particularly when faced with a life-threatening disease (Vuksanovic et al., Reference Vuksanovic, Green and Morrissey2017). Some participants in this study highlighted that they acquired meaning by way of suffering and loneliness. Others approach the end of life and pursuit of meaning as part of attaining positive individual growth (Vuksanovic et al., Reference Vuksanovic, Green and Morrissey2017; O'Gara et al., Reference O'Gara, Tuddenham and Pattison2018; Dönmez and Johnston, Reference Dönmez and Johnston2020). Therefore, healthcare providers have an essential role in facilitating and supporting patients’ pursuit of meaning at the end of life (Breitbart et al., Reference Breitbart, Rosenfeld and Pessin2015; O'Gara et al., Reference O'Gara, Tuddenham and Pattison2018). Knowing and understanding patients’ narratives, their values, experiences, and pivotal moments opens a door for healthcare professionals, and for medicine itself which focuses on holistic and person-centered care researches and practices within the health sciences, to better understanding patients as whole persons and not simply the embodiment of their life-limiting condition. In addition, DT can be easily led and applied by palliative care providers including physicians or nurses who are appropriately trained. Through listening and recording narratives, palliative medicine and palliative care providers can seize a profound opportunity, wherein personhood is not overshadowed by suffering, disease, and vulnerability that is so often encountered by patients facing imminent death.
Limitations
This study was limited to 17 adult patients who had a cancer diagnosis recruited at a single inpatient palliative medicine institution. Although this study offers insights into the perspective of a limited range of patients nearing the end of life, the volume of data was sufficient to achieve data saturation.
Conclusion
DT allows patients to express their deepest hopes and wishes for those closest to them. Although some generativity documents may convey expressions of sorrow and guilt, the majority of themes emerging from the analyses conveys messages that are affirming, including messages of love, appreciation, and forgiveness. It appears that such life review and the construction of legacy supported by DT help dying patients make peace with themselves and those they care about most. In addition to the benefits to patients and families, DT appears to offer healthcare providers a new perspective on how to understand and bear witness to patients who are suffering. It also ensures that personhood is never overshadowed by patienthood, which, in the final analysis, is the essence of dignity-conserving care (Chochinov, Reference Chochinov2002).
Acknowledgments
We thank each terminally ill patient who participated in this study.
Author contributions
M.J., M.A.S., B.A., B.J., and C.F.D. were responsible for the conception, design, and writing the initial draft. M.J., A.R.L., and S.A. were responsible for the database managing and data analysis. All co-authors made the revision of the final report and had full access to all the data.
Funding
B.A. is funded by the National Institute for Health Research (NIHR) Applied Research Collaboration East of England (ARC EoE) programme. The views expressed are those of the author and not necessarily those of the NHS, the NIHR, or the Department of Health and Social Care.
Conflict of interest
None declared.
