Unmet Needs of Palliative Cancer Patients: A Grounded Theory Study

Setting

The research was conducted at the Istituto Nazionale dei Tumori of Milan’s Palliative Care - Hospice, Pain Therapy, and Rehabilitation Complex Unit, which offers a range of services, including home palliative care, inpatient Hospice, and outpatient palliative care service. Home care provides personalized support in the patient’s familiar environment, while inpatient Hospice offers more intensive care. Outpatient palliative care services allow patients to receive daytime care and return home in the evenings. This diverse setting enabled an in-depth exploration of unmet needs among terminal cancer patients across various palliative care contexts.

Sample

Participants were recruited using purposive sampling, to ensure variability in perspectives and experiences, with the sample size determined by theoretical saturation. ³⁸

Patients included in this study were over 18 years old, receiving home palliative care services or admitted to the Hospice or Outpatient palliative care service at the Istituto Nazionale dei Tumori of Milan’s Palliative Care – Hospice, Pain Therapy, and Rehabilitation Complex Unit. They had a diagnosis of advanced-stage cancer (stage III/IV) and/or were in the end-of-life phase. Participants were recruited through referrals from health care providers within their respective settings to the research team, which identified eligible individuals according to the study’s inclusion criteriaAs the analysis progressed, theoretical sampling was used to seek additional data that could refine and elaborate the emerging categories, enrolling new participants who could provide deeper insights into specific aspects of the developing theory. Theoretical saturation was determined when gathering new data did not provide any new insights into the emerging categories. ³⁸

Data Collection

Data were collected through in-depth, semi-structured face-to-face interviews. Charmaz emphasizes using intensive interviewing to closely attend to participants’ stories and construct theories. ³⁹ All interviews were audio recorded and conducted by IB with the support of psychologist, SZ. Each patient was interviewed once in the environment they were in so either at home, hospice or outpatient palliative care service. For outpatients, an appointment was scheduled with the researcher to conduct the interview, to coincide with their next clinical visit. For hospice and home care patients, the researcher contacted them by telephone to arrange a suitable date and time for the interview. Both IB and SZ obtained written informed consent from all participants. They both have a clinical background in palliative care and qualitative research and professional relationships within research site. The interview guide was developed based on literature and research group discussions. After the initial interviews, it became apparent that there were important lines of inquiry; therefore, additional questions related to these topics were included. The initial interview guide is provided in the Supplement Material.

Demographic and clinical data for each patient, including age, gender, diagnosis, Karnofsky Performance Status (KPS), and level of awareness regarding their prognosis and diagnosis, were collected from medical records. The Karnofsky Performance Status (KPS) scale is a widely utilized tool for assessing the functional status of cancer patients, providing a standardized measure of their ability to perform daily activities. ⁴⁰

Data analysis

Data collection and analysis were conducted concurrently, in line with grounded theory methodology. Interviews were audio recorded, transcribed verbatim by AB. The transcriptions were checked for accuracy ⁴¹ by LC, a PhD with a background in palliative care research. The data were analyzed by IL and LC using NVIVO 14 software through Charmaz’s method four steps: (1) initial line‐by‐line coding, (2) focused coding, (3) categorization of focused codes and (4) theoretical coding. Codes and emerging categories were discussed and agreed on by the research team. Preliminary categories were constructed from the coding process and were constantly compared with codes, and emerging categories to reveal new insights. This iterative process ensured that the emerging theory was firmly grounded in the data.^36,42

Memo-writing during data collection and analysis, that documented emerging thoughts and insights, was used to develop ideas and explore relationships between codes and categories.

Rigor

The rigor was ensured by following Charmaz’s criteria for grounded theory^33,36: credibility, originality, resonance, and usefulness. ³⁶

Credibility was ensured through the accurate transcription of interviews, detailed field notes, constant comparisons, and collaborative review of the analyzed data by researchers to achieve consensus and mitigate potential bias.

Originality and resonance of the findings were achieved through ongoing interviews until data saturation and the use of the constant comparative method to validate emerging information.

Usefulness refers to the study’s contribution to knowledge that may be used by researchers.

Ethical Considerations

Ethical approval for this study was obtained from Comitato Etico Territoriale Lombardia 4 with the protocol number INT 127/23. Participants’ data were securely stored and encrypted to prevent unauthorized access. All electronic files were password-protected, and hard copies kept in a locked, secure location.

Informed consent was obtained from all participants before interviews, covering both consent for participation and access to their medical records. Participants were fully informed about the study’s purpose, procedures, data use, anonymity, and their right to withdraw without consequences.

Additionally, data management practices complied with the General Data Protection Regulation (GDPR) and institutional guidelines on data protection and ethical research.

Seeking Empowerment Through Daily Support

Patients in palliative care often feel that the health care system is unresponsive to their vulnerabilities. They experience long waiting times, travel difficulties, postponed appointments, and conflicting opinions from professionals, resulting in feelings of disorientation and mistrust due to a lack of understanding and support.

One participant described the frustration of facing these challenges:

“I was there for four hours waiting for them to call me. In fact, I said, 'I'm leaving because I'm just wasting my time here.”

Interview 1

To strengthen their empowerment, patients believe it would be helpful to bring closure to unfinished matters in their lives, particularly those related to their family, to prevent future difficulties for those who remain after they are gone.

Ensuring the well-being of loved ones becomes a key concern, as illustrated by one participant:

“My thoughts are always about my son, about his family, the thought of not leaving him in situations, in a situation that then makes him, have to tribulate too much later when I'm not there.”

Interview 2

However, not everyone has the strength to navigate daily life independently, sometimes, external assistance is necessary for even the simplest tasks. Economic and social challenges can become overwhelming, intensifying existing stress and making it increasingly difficult to prioritize personal well-being. This is perceptible in the participants’ own words:

“I pay a person to help me around the house because I can't, even if maybe I'm at home however I see that I don't have the energy even the mental energy to say this thing I'll put it here, this I'll put it there... instead sometimes I accumulate because mental fatigue creates all this confusion for me, so I accumulate things.”

Interview 25

Need to Contain the Risk of Losing Dignity

The central concern for patients is their identity in the eyes of others; they seek to be recognized beyond their illness and to maintain the image of who they were before becoming sick, preserving the roles they have built throughout their lives and to which they have always aspired.

As one participant pointed out, self-acceptance is a gradual and challenging process, requiring adaptation to new limits and changing needs:

“In my opinion, a very significant need is that of self-acceptance, because it is not something taken for granted. When you find yourself having lived your life one way and then everything changes, you have to readjust to a new version of yourself. You must gradually accept all these things; it is not easy to come to terms with the new limits and the new needs you have.”

Interview 5

A sense of loss of control over their lives emerges in the words of the participants, thinking back to the life they had before, while simultaneously expressing a strong desire to regain that control. Even among those who claim to still maintain a certain level of control, there is a fear of losing that ability and the necessity of having to delegate.

This aspect is strongly evident in the interviews; notably, one participant characterizes the fear of losing control as a profound threat to their autonomy and self-determination.

“It makes me feel vulnerable to know that I don't have control; I have always had control over everything in my life.”

Interview 26

Patients feel profound sadness and nostalgia for their former lives, emphasizing the gap between their expectations and current reality. Each new limitation diminishes their sense of identity and independence; activities like going to the movies or outings with friends shift from being ordinary to extraordinary desires. The focus changes from normalizing their condition to learning to live with it, finding a new balance, and reassessing priorities.

This change is reflected in the words of one participant, who highlighted the desire for normalcy rather than extraordinary experiences:

“In everyday life, the nonsense, the hogwash – these are the reasons why I need to... have... I don’t want anything extraordinary, just what is normal.”

Interview 27

This journey extends beyond the individual, as the loss of normalcy can evoke feelings of being a burden to others rather than a contributor. Such sentiments can significantly alter the dynamics of relationships with friends and family, impacting the quality of interactions.

As one participant painfully acknowledged, the perception of being a burden weighs heavily on their well-being:

“I got it into my head that I am a burden towards some people, some family members, because I create a bad life for them as well basically, because this is a terrible life”

Interview 21

Support in Managing the Progression of the Disease

The uncertainty regarding the course of the illness and the manner of the end of life leads patients to hope for a gentle passing, characterized by minimal physical and emotional suffering, wishing to face this moment with serenity.

The desire to avoid suffering is further underscored by one participant, who expressed a profound fear of confronting the moment of death:

“The fears…the fears are there, the fears are there, I mean I would like, I would like if it happens that I don't understand, because if I understand I go crazy”

Interview 21

The most frightening thing, beyond the pain itself, is facing everything without human closeness. When alone, the mind wanders, inevitably returning to the thought that the end is near. The presence of someone else can offer not only moments of distraction and lightheartedness but also a sense of security, shared experience and relief.

One participant reflected on the comfort offered by companionship during such vulnerable moments:

“There are always maybe times when I'm maybe more alone, I have more time to think, that then maybe I have some weak moments”

Interview 12

The uncertain waiting these patients experience creates a deep sense of precariousness, both in their current situation and in how to fill their remaining time. This uncertainty leads them to question their future, often leaving them without the answers they seek.

One participant vividly described the intensity of these thoughts, especially during the night, when they are most overwhelming:

“When I can’t sleep, I start to think about how it will end, how it won’t end, how much time I have, how much time I still have... and then it’s... it’s at night that all these thoughts come to you, right before you sleep.”

Interview 1

Understanding and Openness to the Future

The emotional burden of a terminal diagnosis can be overwhelming, but sharing it with a confidant, often a family member or close friend, can lighten the load. Indeed, patients emphasized the importance of having someone to share their evolving experiences and emotions.

One participant described the comfort of receiving such support and the relief of the possibility share the burden of what they were experiencing:

“Help from others, even simply as a shoulder, helps me to vent, to declare what I have, to not be afraid to have what I have, to be open.”

Interview 13

Physical presence does not always guarantee deep understanding, and the strain of suffering can lead even close friends to distance themselves. This often results in a shift in interpersonal relationships, leaving patients feeling misunderstood, even by those who have previously been supportive.

As one participant explained, the societal tendency to deny or push away the realities of illness and death often contributes to this emotional distance:

“Because in my opinion many people are not able to accept the disease even if it is not, it is not their own. There is a society in my opinion for heaven's sake eh... where a little bit pain and illness, death (is moved) are a little bit denied, pushed away. […] ”

Interview 23

In order to look to the future, there remains a need to look back and reflect on one’s past. Some regrets may surface over missed opportunities or things left undone, yet there is also a strong desire to move forward and rise above them.

One participant critically reflected on this complex emotional experience, expressing a sense of regret while simultaneously acknowledging the inherent limitations of retrospective analysis:

“Especially in the beginning maybe checks done earlier eh maybe wouldn't have changed anything, no one has a crystal ball we can't know, eh however... neglecting symptoms here on that yes a little bit of regret I have.”

Interview 29

Seeking Existential Support

The mind often succumbs to persistent thoughts about death and the unknown, leading to feelings of overwhelm. In these moments, cultivating emotional resilience becomes essential, not by denying reality but by confronting it. Developing strategies to address these emotions allows individuals to find serenity and clarity, enabling them to better manage their fears and uncertainties.

One participant described how they sometimes found the strength to momentarily set aside their fears, using courage to manage the intensity of their emotions:

“It takes on a whole other, let's say another flavor, that is, another point of view and ... sometimes you manage to, to let's say you have courage and you put it in the corner for a moment this fixed thought that's there, other times you get overwhelmed.”

Interview 15

Between reality and hope, patients experience moments of overwhelm, followed by instances in which the hope for recovery and a return to well-being arises. This hope, although at times irrational, serves as an emotional refuge, allowing them to imagine a better future, even if only temporarily.

One participant emphasized the fluctuating nature of hope as a significant source of emotional comfort:

“The hope would be to get well, live four or five more years peacefully quietly, continue to ... to live.”

Interview 19

Therefore, patients develop personal strategies to navigate between these extremes, often finding comfort in transcendence. Through the connection to a higher dimension, patients gain the strength to accept the finiteness of earthly existence, leading to a profound sense of inner tranquility.

As one participant pointed out, this approach contributed to the emotional coping, stating:“In fact I from the very beginning told the doctors you continue with your therapy I go on my way, in the sense, I try to pray, I have people praying for me, this is very important.”

Interview 25

Strengths and Limitations of the Study

We developed a model of unmet needs in the context of oncological palliative care using a rigorous methodology that allowed us to elicit and focus on the patients’ perspectives, coming from different palliative care settings. However, this study has some limitations like the single-center nature of the study. The terminal stage of illness in the sample posed a significant challenge both in the participant recruitment phase and in the conduction of interviews. Further research could be conducted before clinical decline to overcome these limitations and enrich the range of unmet needs. Additionally, the use of heterogeneous data collection settings may have influenced the results, offering a broad view of experiences rather than addressing setting-specific needs. Finally, data were not returned to patients as their very short prognosis, limiting the ability to compare findings with them.