Abstract
Background:
Individuals facing life-limiting illnesses undergo a profound transformation that encompasses significant physiological changes, in the level of medical care received, and a shift in overall goals of care. This transformation is irreversible and involuntary. However, individuals living with mental health conditions and life-limiting illnesses are not able to go through transformation due to diagnostic overshadowing. Previous research has examined the transformations experienced by caregivers in the context of spinal cord injuries, as well as by professional caregivers in palliative care, highlighting the complexities of their roles and the emotional adjustments they undergo. However, a notable gap in the literature exists regarding the transformation of individuals themselves who are confronting life-limiting illnesses.
Objectives:
This study explored the physical and psychological transformations of individuals living with a Life-Limiting Illness, focusing on how they interpret and understand these changes.
Design:
To explore this transformation, this study employed an interpretive hermeneutic phenomenological design, guided by an interpretivist-constructionist theoretical framework.
Methods:
Fourteen qualitative interviews were conducted both face-to-face and via Zoom.
Results:
This study reveals that the illness trajectory of individuals living with a life-limiting condition consists of three stages, which can be metaphorically described as follows: (1) Chrysalis formation: This stage represents the muted voice, where the experiences of individuals with life-limiting illnesses are expressed and supported through the medical interventions provided by healthcare professionals. (2) Breakdown of the chrysalis: This stage is characterised by unsuccessful medical interventions and subsequent physical deterioration of the individual’s health. (3) Emerging from the chrysalis: In this final stage, the individual forms a new identity and finds new meaning in life as a result of living with a life-limiting illness.
Conclusion:
The voice of persons with life-limiting illness is not stagnant; it undergoes various transformations at each stage of the illness trajectory. An understanding of this transformation process, along with the new identities that emerge at each stage, is crucial for designing and delivering palliative care services that effectively and timeously address the unique physical, emotional, and psychological challenges individuals encounter during each stage of their transformative journey.
Introduction
Metamorphosis is a biological and life history process characterised by significant physiological changes and transition, leading to a profound and often irreversible transformation in an organism’s physical appearance and change of habitat.1,2 The concept of metamorphosis is demonstrated in individuals facing life-limiting illnesses who often undergo significant transitions as their symptoms worsen. 3 The worsening of symptoms can lead to existential uncertainty due to physical deterioration and social isolation, 4 and changes in the level of medical care received. 5 In addition, existential uncertainty leads to an awareness of the finite nature of one’s existence, prompting individuals to confront profound questions regarding physical transformation of their bodies, the meaning of life, personal choice, and the inevitability of death Ullmann.6,7
To explore how individuals living with a life-limiting illness interpreted and understood these changes and the meaning of life, this study utilised Heideggerian phenomenological reasoning, also known as hermeneutics. Hermeneutic phenomenology suggests that individuals who are directly experiencing the phenomenon possess the language and nuance to articulate their feelings and insights, reinforcing the idea that phenomenology’s primary objective is to uncover the essence of what it truly means to live through such experiences.8,9 The phenomenon of physical transformation and meaning to life due to life-limiting illness is conceptualised in this study as metamorphosis.
Previous research has examined the voice metamorphosis of caregivers in spinal cord injuries 10 and professional caregivers in palliative care settings, 11 shedding light on the complexities of their roles and the emotional adjustments they undergo. However, to the best of our knowledge, a notable gap exists in the literature concerning the voice metamorphosis of individuals facing life-limiting illnesses, particularly through the lens of Heideggerian hermeneutic phenomenology. Therefore, to address this gap, this paper explores the voice metamorphosis of people living with a le-limiting illness, focusing on their lived experiences. Research demonstrates that genuine insight and understanding of the experience of living with a life-limiting illness belong solely to those who are deeply immersed in that reality. 12
Study design
Interpretive hermeneutic phenomenological reasoning was employed to explore the metamorphosis of individuals living with a le-limiting illness, focusing on the voice and lived experience of those immersed in that reality. Aligned with hermeneutics as an interpretive theory, this study adopted an interpretivist-constructionist epistemological and ontological perspective. Unlike positivist paradigms, which focus on quantifying and explaining human behaviour, interpretivism aims to grasp the nuances of behaviour from the perspectives of individuals who are actively experiencing the phenomenon. 13 In addition, interpretivism recognises research participants as owners of their experiences. 14 Similarly, constructivism recognises the interactive experience of people occupying the same social space and argues that knowledge is constructed and negotiated through social interactions. 15 Therefore, in the context of this study, metamorphosis is understood not only through the voice of persons experiencing the phenomenon but also through an understanding of the interaction of voices that occupy the same social space.
Methods
Fourteen qualitative interviews were conducted both face-to-face and via Zoom between September 2022 and December 2023. A consent form detailing the study, including confidentiality measures and the right to withdraw, was sent to participants 1 week before their interviews. Participants signed the forms and sent screenshots of signed forms to the chief investigator (CI). They were assured that their decision to participate or decline would not affect their care quality. All participants had the option to receive study results; three expressed a strong interest, while others left the decision to the researchers. For this study, a life-limiting illness is defined as a progressive medical condition without a cure and with a prognosis of less than 12 months during which treatment focuses on symptom management rather than curative intent.
Inclusion criteria
A purposive sampling was used to recruit participants who met the following criteria: (1) were living in what they considered their home or permanent place of dwelling; (2) living with a potentially life-limiting illness; (3) had been involved in conversations with healthcare professionals about medical interventions, prognosis, and treatment options; (4) were aged 18 years and above; (5) were able to communicate in English; and (6) were willing to talk their experiences.
Exclusion criteria
The study excluded the following participants: (1) hospitalised; (2) living in any type of healthcare institution; (3) with a prognosis of more than 12 months.
Recruitment
Participants were recruited from a retirement village in Perth, Australia, and Facebook. The recruitment was led by the CI, a PhD candidate and research assistant with experience in qualitative research. Seventeen participants joined, but three dropped out without providing reasons. The following approach was used:
Independent living organisation
The study objectives and inclusion-exclusion criteria were shared with healthcare professionals, such as nurses, social workers, and medical doctors at the independent living retirement village. They identified potential participants and distributed flyers and participant information sheets during their visits. The information sheet explained the roles of investigators, outlined the study’s purpose and procedures, provided sample interview prompts, addressed ethical considerations, and included contact details for the researchers.
Social media platform: Facebook
A participant information sheet and study flyer were posted on Facebook for public access. Interested individuals emailed the CI for more details. Interviews were scheduled for those who wished to proceed, and consent forms were sent to all participants prior to the interviews, reminding them of their right to withdraw at any time. Interview data was confidential, with no personally identifiable information, and stored in OneDrive, accessible only to project personnel. Non-identifiable data will be destroyed after 5 years. The 14 interviewed participants belonged to the following categories: young adults, 18–34 years 2 participants, middle-aged adults, 35–64 years 3 participants; and older adults 65 and above 9 participants. The remaining participant characteristics are presented in Table 1.
Participant characteristics.
Data collection
A structured interview guide containing sample questions was sent to participants 1 week before the interviews. The interviews were conducted in a semi-structured format in the participants’ home environments. All participants expressed satisfaction with being interviewed solo by the male CI and verbally consented to audio recordings for precise data collection. Demographic information was documented before and after the interviews.
In line with Heideggerian phenomenology, participants selected pseudonyms and the method of interview, conducted via Zoom by the CI. Each interview lasted about 30 min, and participants preferred not to be involved beyond the interview. Interview questionnaires were pilot tested for clarity, wording, and length of interview on 14% of study participants, and no changes were made.
Trustworthiness
Critical reflexive practice, which is an awareness and ability to notice how one’s cultural, personal, and social context and that of others influence their interpretation of the world around them 16 was maintained by all researchers throughout this study. There were fortnightly briefing and debriefing sessions among researchers. These sessions ensured member checking, trustworthiness, and a clear audit trail. 17
Statistical analysis
Data analysis was undertaken after each interview. After anonymising them, the CI transcribed all interviews verbatim and entered data into QSR NVivo 14 18 for systematic data management. The CI coded all the data, which was then independently reviewed by the other two authors involved in the study. The CI had received training in using NVivo software. NVivo 14, a qualitative software, facilitated the organisation, management, and presentation of the data. Data analyses followed van Kaam’s psychophenomenological method (PPM), 19 a comprehensive four-stage, 12-step approach that facilitates the identification of essential concepts within the shared experiences of individuals (Figure 1). This method entailed a detailed process of analysis, translation, transposition, and phenomenological reflection, aimed at uncovering the profound meanings inherent in participants’ experiences. Themes were identified and refined by isolating and eliminating repeated statements to ensure clarity. Participant language was preserved for authenticity, with excerpts categorised under each theme. These were then described using professional terminology relevant to individuals facing life-limiting illnesses.

van Kamm’s psychophenomenological method (Anderson and Eppard 19 ).
All three researchers rigorously examined and critiqued the themes, enhancing the analysis and understanding of the data utilising the constant comparative method. This iterative process ensured the findings captured the participants’ lived experiences. First, categories of data derived from the first interview transcript were analysed before interviewing the second participant, leading to the drawing up of preliminary themes. Second, new data from the second interview were analysed and compared with data from the first interview. This process was repeated in all subsequent interviews. The constant cycle of comparing data led to either the formation of new themes or assigning excerpts from new data to already existing themes. During the 13th interview, thorough analysis revealed that no new themes emerged from the data collected thus far. To rigorously confirm data saturation, a crucial aspect ensuring comprehensive understanding and validity, a 14th interview was conducted 2 months later. The additional interview provided further confirmation of the findings, as it did not introduce any new themes or insights. Every theme derived from the data was based on the precise language and phrases articulated by the participants, thereby ensuring that the analysis was firmly anchored in their lived experiences. This approach not only enriched the findings but also enhanced the authenticity of the research. The qualitative study adhered to the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist. 20 Among the 14 participants interviewed, 2 were young adults 18–34 years, 3 were middle-aged adults, 35–64 years. Hence, the physical and psychological transformation of young adults were not analysed to prevent exposure and maintain confidentiality.
Results
The narratives of 14 participants in varying stages of their illness reveal that the voice of persons living with a life-limiting illness undergoes three stages of metamorphosis as they contemplate their mortality. This study has metaphorically classified these three stages of metamorphosis as follows:
1. Chrysalis formation: This stage represents the muted voice, where the experiences of individuals with life-limiting illnesses are expressed and supported through the medical interventions provided by healthcare professionals.
2. Breakdown of the chrysalis: This stage is characterised by unsuccessful medical interventions and subsequent physical deterioration of the individual’s health.
3. Emerging from the chrysalis: In this final stage, the individual forms a new identity and finds new meaning in life as a result of living with a life-limiting illness.
However, not all voices undergo complete metamorphosis; for individuals with a life-limiting illness and an underlying mental health condition, their voices often remain unheard and ultimately fade away, trapped within the chrysalis.
Stage 1: Chrysalis formation – The voice is of persons with life-limiting illness carried and reflected through medical interventions employed by healthcare professionals
Participants expressed that they felt a sense of surrender and safety in the hands of healthcare professionals when they were newly diagnosed with a life-limiting illness. They wanted guidance from someone knowledgeable and experienced; as a result, they to refrained from questioning their treatment plans.
I didn’t want to question things too much in this area. What do I know, and I thought if I kept on throwing my views it could delay treatment. Remember this is a serious condition and at that time I needed things to be done quickly, no room for delay. (Jade)
In addition, participants who expressed a sense of safety and security while in the care of healthcare professionals not only refrained from voicing their concerns but also muted their voices and allowed healthcare professionals to do anything they deemed necessary.
I allowed doctors and nurses to take care of me and perform what they deemed necessary. (Don)
Not only did participants find safety in the expertise of healthcare professionals, but they also felt safe and optimistic about the new drugs and clinical trials. Participants such as Indie thought they had a good chance of survival: I was asked if I wanted to participate in this trial and I didn’t think I was going to die too soon; with all this research and new drugs and trials I have participated in, I thought I had a good chance (Indie)
Stage 2: Breakdown of the chrysalis – Marked by failed medical interventions and physical deterioration
Due to physical deterioration, failed trials, and medical interventions, persons with life-limiting illnesses began to acknowledge the irreversible nature of their condition. They also began to see their physical body as an empty shell with nothing to work on.
Nothing was working. . . . I was very weak and couldn’t dress myself. I know for sure that I am nearing the end of my journey. . . (Zach) I have wasted away, do you think there is anything left I am just a skeleton. There is nothing to work on; I am just an empty shell. (Rocky)
In addition, participants began to realise that due to the rapid but steady decline of their physical bodies, they could not live longer.
In the last 2 months I have gone downhill, and nothing seems to work. I have come to a realisation hat I cannot live forever. (Les)
Stage 3: Emerging out of the chrysalis – Reshaped by the disease
Necessitated by the irreversible and metaphoric breaking down of the chrysalis, persons with life-limiting illness embraced their mortality, perceiving death as an inescapable element of the human experience.
I am not afraid to die; dying is an intrinsic part of life. The man upstairs is calling me, and I cannot refuse that call. . .No one and not even the doctors have the power to stop me from going. . . (Rocky)
Furthermore, the profound concept of death’s inevitability sparked an empowering realisation within participants: they had the voice to shape the conditions surrounding their illness. In this moment, they embodied a deep awareness that no one else possessed the voice necessary to dictate the nature of their death. The participants’ declaration to die on their own terms underscores their unwavering personal beliefs and desire to be heard as they confronted the reality of mortality.
I am to leave this world on my own terms. . . No one, no matter how well-intentioned, can truly understand what I have gone through to tell me how I should go. (Zach) I have stopped taking all medication, it makes me sick. This choice stands out to me as particularly significant because it is rooted in my personal beliefs. (Jade)
Stage 4: Trapped within the chrysalis – Diagnostic overshadowing
Participants living with an underlying mental health condition and a physical life-limiting illness had a different experience from those without a mental health illness. Their physical symptoms were often dismissed as psychosomatic. Healthcare professionals overlooked critical life-limiting conditions because their attention was predominantly directed towards addressing the participants’ mental health issues, even though their symptoms were not primarily mental health-related.
. . .when I finally went to the hospital, it took a very long time for the doctors there to team to shift their focus from mental health and focus on my physical health. (Brenda)
Lack of examining the participants’ physical health resulted in healthcare professionals labelling them as delusional.
My complaints of pain and genuine concerns about my health were reduced to delusions in their eyes. (John)
Additionally, diagnostic overshadowing silenced the voices of individuals living with mental health conditions, rendering their experiences and perspectives inaudible within the clinical space. This experience highlights the frustrating disconnect between physical sensations and the interpretations made by healthcare professionals, ultimately leading to a profound sense of alienation in the very spaces where he sought help.
Discussion
This study reveals that persons with life-limiting illness go through three distinct transformative stages in the trajectory of their illness. These stages entail: (1) The chrysalis formation, (2) The breakdown of the chrysalis, and (3) Emerging out of a broken chrysalis.
The chrysalis serves as an essential safe place, providing protection during an insect’s metamorphosis, and it symbolises quiet, secluded spaces that safeguard life as it undergoes change. 21 Likewise, the lived experience of participants in this study shows that they withdrew to what they considered the safe zone by muting their voices and trusting healthcare professionals to do what they consider “necessary work.” However, assuming that healthcare professionals possess all-encompassing knowledge can lead to a form of benevolent medical paternalism. 22 This paternalistic approach treats healthcare as a scientific domain where professionals are seen to hold superior knowledge compared to those living with the illness. 22 This dynamic is especially prevalent during the early stages of a life-limiting condition, where a focus on treatment and extending life tends to overshadow the voice of persons living with a life-limiting illness. 23
Interviews in this study reveal that the pressure to mute their voice was due to the perceived urgency of a life-limiting diagnosis, and the need to give healthcare professionals a chance to provide a clear vision and strong leadership in navigating the complexities of their illness. Allowing healthcare professionals to carry their voices is metaphorically represented by the metamorphosis of a caterpillar that forms a chrysalis to protect itself while its decomposed body transforms into a butterfly. Therefore, the voice of healthcare professionals became the chrysalis that temporarily shielded persons with life-limiting illness from their vulnerability due to a life-limiting illness.
However, the perceptions and feelings of protection and preservation dissipated with physical deterioration and loss of independence as persons with life-limiting illness transitioned to stage 2 of their illness trajectory. This transition can also be triggered by the failure of previously effective therapeutic options and life-extending treatments to yield positive results; as a result, patients often experience a significant decline in their ability to self-care.24,25 In addition, transitioning to the next stage of a life-limiting illness can be identified by increased symptom burden, such as uncontrolled pain, fatigue, breathlessness, nausea, and weakness.26–28 Research evidence reveal that at this stage, both the patient and healthcare professionals become aware of the futility of treatment and that the disease will lead to death. 29 Such an awareness may lead to challenges such as financial insecurity, depression, and anxiety, alongside experiences of anticipatory grief.30,31 This study refers to this stage as a transition to a liminal space of mortality. Liminality denotes the transformation from one state to another; it is a transitory border between two different states. 32
Much like the transformative effect of metamorphosis, interviews in this study revealed that the physical and physiological changes because of a life-limiting illness were irreversible and involuntary. Existing research literature shows that the functional status of persons with life-limiting illness can be temporarily restored and reversed as they oscillate between acute episodes and periods of improved health. 33 Nonetheless, a temporary improvement in symptoms does not mean reversal of a life-limiting illness. Interviews in this study show that the real and perceived physical deterioration because of a life-limiting illness was enough to make participants recognise the inherent limitation of their existence. Consequently, they engaged in a thoughtful reflection about the meaning of their existence and that marked the third transformative stage.
At this stage, while the physical form of persons with limiting illness did not transform to something different, their perceptions of self-changed. They considered death as part of life and saw themselves as spiritual beings. Echoing the insights of a similar study, death was seen not as a mere tragic ending or pitiful epitaph but rather as a liberating force. 34 Research evidence shows a significant correlation between spirituality, hope, finding meaning, and accepting a life-limiting diagnosis. 35 For instance, a philosophical worldview, particularly one rooted in religion, is not only intrinsic but also holds substantial functions both as a coping mechanism and as a framework through which they can interpret their illness. 36 The newfound consciousness of seeing oneself as a spirit not only sparked a sense of urgency to live as they pleased but also fostered a greater appreciation for the fleeting moments that defined their experiences. Aware that their time was limited, they felt compelled to express themselves fully and live in alignment with their values and personal beliefs.
However, our study reveals that not all individuals living with a life-limiting illness experienced complete metamorphosis; instead, their voices remain trapped in the chrysalis that was meant to protect them. For example, the voice of individuals with a dual diagnosis of an underlying mental health condition and a physical life-limiting illness was overpowered by diagnostic overshadowing. Diagnostic overshadowing is the misattribution of a physical health issue to a pre-existing mental health illness. 37 Despite the evident physical problems, participants in our study reported that their symptoms were predominantly linked to mental health concerns. Consequently, the urgency of their physical ailments went unrecognised and unaddressed.
In addition, our study highlights that the presence of diagnostic overshadowing led to prejudiced attitudes, an environment lacking in compassion and respect, and communication misalignments. Research evidence show that diagnostic overshadowing is influenced by systemic healthcare shortcomings, a lack of mental health knowledge and skills among healthcare professionals, and stigmatising attitudes, 38 hence the voice of individuals with life-limiting illness may be silenced by the weight of labels and misinterpretations. While the distinction in voice metamorphosis between participants with a dual diagnosis and those with only a life-limiting illness is well-articulated, participants did not reveal identifiable trajectory variations between cancer and non-cancer conditions. Therefore, future studies should explore the potential differences across various disease groups.
Conclusion
This study illuminates the three transformative stages and identities that emerge as individuals with life-limiting illness go through their experiences and interpret their own situation. The voice metamorphosis model presents a novel contribution to the field of palliative care. This conceptual framing not only recognises the plurality of perspectives within care relationships but also the evolving identity of persons with life-limiting illness and highlights the ways in which voice, power, and understanding are negotiated between patients, families, and professionals. In addition, this study highlights the experiences of individuals with a life-limiting condition and an underlying mental health illness whose voices are suppressed by diagnostic overshadowing, characterised by systemic healthcare shortcomings, a lack of mental health knowledge and skills among healthcare professionals, and stigmatising attitudes. Longitudinal quantitative validation is required to augment the conclusions drawn from this study.
Strength of the study
A significant strength of this research lies in its examination of the voice of persons with life-limiting illness versus that of caregivers utilising a robust and transparent purposive sampling, piloted semi-structured interviews, van Kaam’s PPM analysis via NVivo with triangulation and constant comparison method to confirm data saturation. These techniques highlight the methodological rigour, originality, and contextual depth of this study, underscoring its significant contribution to understanding how individuals with life-limiting illnesses express their voices and experiences in interactions with healthcare professionals.
Limitations
While the study provides valuable insights into the experiences and voices of individuals living with life-limiting illnesses, some limitations should be acknowledged to contextualise the findings and guide future research. First, the study sample was drawn primarily from an urban population, which may limit the applicability of findings to individuals living in regional or rural settings. Participants also varied in their duration of illness experience, which may have influenced the depth and focus of their responses. Second, only English-speaking participants were included, excluding the perspectives of culturally and linguistically diverse populations who may experience additional communication barriers or different cultural understandings of illness and care. Third, recruitment through a single healthcare organisation and Facebook may have introduced sampling bias, as participants from these sources might not represent the broader population of individuals living with life-limiting illnesses.
Implications for practice, theory, or policy
A comprehensive understanding of the various stages of metamorphosis, along with the new identities that emerge at each phase, is crucial for designing and delivering palliative care services that effectively address the unique physical, emotional, and psychological challenges individuals encounter during their transformative journeys. For instance, recognising the profound impact of terminal illness on a person’s identity can inform tailored interventions that support not just pain management but also emotional well-being and social connections. In addition, illuminating the experiences of individuals with a life-limiting illness and an underlying mental health condition encourages healthcare professionals to critically evaluate their mental health knowledge and skills, as well as their attitudes and approaches toward these individuals.
Footnotes
Acknowledgements
The authors wish to acknowledge the Commonwealth Government of Australia for providing a PhD scholarship to Nqobile Sikhosana, who participated in this study in the capacity of a PhD in Nursing student.
Ethical considerations
The Human Research Ethics Committee (HREC) of The University of Wollongong approved this study (Approval No. 2022/360). All HREC guidelines were adhered to, and no adverse issues occurred.
Consent to participate
Participants signed consent to participate forms before the interview. They were assured that their decision to participate or decline would not affect their care quality.
Author contributions
Funding
The authors received no financial support for the research, authorship, and/or publication of this article.
Declaration of conflicting interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Data availability statement
Patient data are not available, as patient consent for data sharing was not obtained.
