The patient reported transformation of identity and voice in life-limiting illness

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:

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.

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Table 1.

Participant characteristics.

Names of participants (pseudonyms)	Gender (as identified by participant)	Primary diagnosis	Living arrangement	Educational attainment	Prognosis	Mode of interview
Jade	Female	Multiple myeloma	Lives with family-own home	Tertiary	<3 months	Zoom
Sky	Male	End stage renal disease	Lives with family (own home)	Tertiary	<6 months	Zoom
Don	Male	Leukaemia	Lives with family (own home)	Tertiary	<1 year	Zoom
Milo	Female	Metastatic breast cancer	Alone-own home	Tertiary	<6 months	Face-to-face
May	Female	Metastatic breast cancer	Lives alone (supported living)	Tertiary	<6 months	Face-to-face
Les	Female	Chronic Obstructive Pumonary Disease (COPD)	Lives with husband (supported living)	Tertiary	<1 year	Zoom
Mary	Female	Pancreatic cancer	Lives with family (own home)	Secondary	<1 year	Zoom
Indie	Female	Metastatic Breast cancer	Lives with family (own home)	Tertiary	<3 months	Zoom
Rocky	Female	COPD	Lives alone (own home)	Secondary	<3 months	Face-to-face
Zee	Male	Liver cirrhosis	Lives alone	Tertiary	<6 months	Zoom
Zach	Male	Liver cirrhosis	Lives with family	Tertiary	<1 year	Zoom
Martha	Female	COPD	Lives alone (supported living)	Tertiary	<1 year	Zoom
John	Male	Prostate cancer	Lives with wife (supported living)	Tertiary	<6 months	zoom
Brenda	Female	Heart failure	Lives alone (supported living)	Tertiary	<3 months	Face-to-face

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.

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Figure 1.

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:

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.

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.