Psychological adjustment to death anxiety: a qualitative study of Chinese patients with advanced cancer

Abstract

Objectives

Death anxiety (DA) refers to the negative emotions experienced when a person reflects on the inevitability of their own death, which is common among patients with cancer. It is crucial to understand the causes, coping styles and adjustment processes related to DA. The purpose of this qualitative study is to explore the adaptation process and outcome of patients with advanced cancer with DA and to provide evidence-based support for the development of targeted intervention measures to improve the mental health of such patients.

Design

This cross-sectional qualitative study sampled patients with advanced cancer (n=20). Grounded theory procedures were used to analyse transcripts and a theoretical model generated.

Setting

All interviewees in this study were from a tertiary oncology hospital in Hunan Province, China. The data analysis followed the constructive grounded theory method, involving constant comparison and memo writing.

Participants

A purposive and theoretical sampling approach was used to recruit 20 patients with advanced cancer with diverse characteristics.

Results

A total of 20 participants were included in the study. Four stages of DA in patients with advanced cancer were extracted from the interview data: (1) death reminder and prominence; (2) perception and association; (3) defence and control; (4) transformation and Acceptance.

Conclusions

This study highlights the psychological status and coping strategies of dynamic nature of patients with advanced cancer when confronted with negative emotions associated with death. It emphasises the importance of timely identification of DA in psychological nursing for patients with advanced cancer and the need for targeted psychological interventions based on their specific psychological processes.

Implications

Knowing interventions that aim to promote the integration of internal and external resources, enhance self-esteem and facilitate a calm and accepting attitude towards death could ultimately reduce the overall DA of patients with advanced cancer.

Strengths and limitations of this study.

• The results provide theoretical support for tailored psychotherapy interventions to reduce death anxiety.

• Understanding the psychological adjustment of death anxiety in patients with advanced cancer was helpful for hospice nurses to better take appropriate psychological care.

• Qualitative methods can provide insight into research findings and perceptions that are often missed in quantitative research.

• Views expressed largely represent individuals in a Chinese single comprehensive cancer centre, the findings may not be generalised to other countries.

Introduction

According to the study of the International Agency for Research on Cancer (IARC),¹ there were approximately 19.29 million new cases of malignant tumours worldwide in 2020, resulting in 9.96 million deaths. China accounted for 23.7% of the new cases and 30.2% of the deaths, highlighting the significant impact of cancer on public health in the country. Death anxiety (DA) refers to a conscious or unconscious psychological state that arises when individuals are confronted with the threat of death, triggering defence mechanisms such as anxiety, fear and restlessness.² Several studies have indicated that patients with cancer commonly experience DA, which persists throughout the various stages of the disease.^{3 4} The prevalence of anxiety and distressing thoughts related to death among patients with advanced cancer is estimated to be around 80%.^{5 6}

DA is influenced by the physical and psychological conditions of patients with cancer⁷ and, conversely, it also affects their physical and mental health as well as prognosis.⁸ It hinders the transformation of attitudes and concepts towards death, significantly impacting the quality of life in patients with advanced cancer,² and may even accelerate the progression of the disease.⁸ Dating 50 years ago, mental health professionals had been encouraged to provide psychological intervention for patients with advanced cancer whose DA was causing them much psychological turmoil.⁹ However, there are few empirical studies on their psychological coping strategies.¹⁰

At present, there is an increasing focus on DA in patients with cancer. Numerous quantitative studies have been conducted to investigate the current situation and influencing factors of DA. However, there is a lack of studies that specifically examine the subjective psychological course and coping style of Chinese patients with advanced cancer in relation to DA. Furthermore, individuals with terminal illnesses who report higher levels of DA tend to have fewer characteristics associated with a good death, such as being aware of their impending death, accepting death peacefully, being surrounded by loved ones and experiencing physical comfort.¹¹ Thus, psychologists needed to focus on treating DA and other mental disorders at the end of life in order to improve psychological health, especially among patients with advanced cancer.

Grounded theory is a qualitative method that emphasises the induction or emergence of information from data to establish a theory or model.¹² Given its emphasis on real-life contexts, grounded theory was considered the most appropriate research method for this study. The purpose of this study was (1) to observe and understand DA from the perspective of Chinese patients with advanced cancer and develop substantive theories rooted in real-life situations; (2) to explore the actual experiences of DA in Chinese patients with advanced cancer and construct a theoretical framework for their psychological coping and transformation. The insights gained from this research may be valuable in the development of targeted psychological interventions for Chinese patients with advanced cancer.

Methods

Design

This study used the qualitative research method of grounded theory based on deconstructionism and adopted purposive and theoretical sampling. We took Chinese patients with advanced cancer as the research objects to deeply explore their psychological adaptation process to DA under the characteristic cultural background, so as to form a more explanatory and reference strategy theory of coping with DA.

Sample and setting

The current exploratory study was undertaken at a tertiary teaching and referral cancer hospital in China. Eligible participants were recruited through outpatient follow-up consultations, telephone contact and in-patient screening. Inclusion criteria included: (1) aged ≥18 years old; (2) patients with pathologically confirmed malignant tumours; (3) the tumour stage of patients was III/IV; (4) patients who had DA (the Templer’s Death Anxiety Scale score ≥7⁴); (5) patients who knew the disease and condition; (6) patients with normal communication and expression ability; (7) patients who gave informed consent and voluntary participation. Exclusion criteria were as follows: (1) patients who were seriously ill and could not cooperate; (2) patients who had mental or cognitive impairment; (3) patients who had taken any psychological professional treatment or professional support after the diagnosis of cancer.

The purposive and theoretical sampling frame was addressed by the following steps: at the beginning of the interviews, sample selection aimed to maximise differentiation based on the study’s objectives, including factors such as gender, age and tumour type. During the coding process and the gradual development of conceptualisation, the focus of the investigation was adjusted based on the level of conceptualisation. The next interviewee was selected through theoretical sampling to gather more information and achieve theoretical saturation of data.¹³ The attainment of theoretical saturation was indicated by the development and refinement of concept categories in terms of dimensions and attributes, as well as the establishment and verification of relationships between these concept categories. Sampling was halted when no new topics emerged in three consecutive interviews in this study.

Patient and public involvement

Participants were not involved in setting the research question or the outcome measures, but they were central to obtaining the data as interviewees who shared their valuable perceptions.

Procedures

Participants signed informed consent forms and subsequently scheduled interviews with researchers to ensure that their treatment and rest periods remained unaffected. Semi-structured interviews were conducted and analysed by trained local researchers and staff members, who had a graduate’s degree or doctorate degree in nursing and were affiliated with the hospital where the study took place but had no prior interaction or relationship with the participants. All the interviews were conducted in a separate ward at the hospital to ensure the protection of patient privacy and a quiet, undisturbed environment. The interviews aimed to delve into the experiences and emotions of individuals with advanced cancer, with a particular focus on the challenges associated with DA and the coping strategies employed to manage them (refer to online supplemental file 1 for the final interview questions). On average, each interview lasted for approximately 40 min. Audio recordings were made and verbatim transcripts of the interviews constituted the raw data. Post-interview reflection notes were promptly documented within 24 hours after each interview.

Data analysis

Since different researchers might have different themes extracted from the participants’ same sentence, we finally reached a consensus through discussion to improve the reliability of the research results.¹⁴ In this study, qualitative interviews were analysed using Microsoft Word and NVivo V.12¹⁵ employing a frame analysis method, which consisted of six stages¹⁶: (1) CFR labelled and annotated the raw data line by paragraph to extract key concepts and information from it, reviewed and checked the original records to ensure the integrity and validity. (2) The interview contents were constantly compared, and different topics were coded. The coded data were classified according to common characteristics and themes to form corresponding categories.¹⁷ (3) The CFR assigned a concise and descriptive label to each category or concept for subsequent analysis and discussion. Through the organisation and reorganisation of the norm and label, an overall theoretical framework was gradually constructed to explain and interpret the qualitative data. (4) XXH developed a preliminary thematic framework and established reliability with additional expert researchers. (5) Memo writing was used throughout to help with this process, by focusing on any coding changes or modifications, any explanations, reflections, ideas for theoretical sampling or any links to the existing literature. An example memo can be found in online supplemental files 2. (6) All researchers made charts of the data, analysed the data according to the topic or participants and built a comprehensive theoretical framework together.

Ethics

Data were anonymised for privacy and confidentiality reasons. In the course of each interview, the interviewers closely observed the changes in the interviewees’ tone and facial expression, provided them with appropriate stability and support and provided them with corresponding psychological counselling by professional psychologists when necessary.

Results

A total of 20 patients with advanced cancer with various tumour types were finally recruited for the study. Ten interviewees were female and ten were male. Ages ranged from 25 to 68 years among patients. The interviewees were suffering from different types of cancer and were at various stages of the treatment procedure.

We enumerated the original quotes of two participants under each generic theme. Figure 1 illustrates the psychological development of patients with advanced cancer in the face of DA, and figure 2 summarises the subject words extracted from the interview data, which demonstrates how underlying factors influence the DA of patients with advanced cancer, as well as their perception of DA and coping strategies to deal with its impact.

Figure 1.

Schematic diagram of psychological adjustment to death anxiety in Chinese patients with advanced cancer.

Figure 2.

Qualitative themes extraction of death anxiety in patients with advanced cancer.

Death reminder and prominence

All patients with advanced cancer indicated the sources of their DA, which could be broadly categorised as cancer diagnosis, treatment, recurrence and situations related to death. This suggests that a nurse-led multidisciplinary team could provide targeted psychological counselling to address the specific causes of DA and improve the patients' quality of life during palliative care provision.

Cancer diagnosis

Now 18/20 participants perceive cancer as incurable. In their minds, cancer and death have long been synonymous, and even more terrifying than death itself. Nearly all participants expressed concerns about their future survival following a cancer diagnosis and could not help but imagine a bleak outlook.

Everyone knows that terminal tumors signify death. From the day I received my diagnosis, I wondered how many days I had left to live. It plunged me into deep anxiety. (Participant 4)

Cancer is going to kill you, and I'm in the final stage, so I'm dying anyway. The day I was diagnosed felt like receiving a death sentence. (Participant 9)

Cancer treatment

In our study, 15/20 participants often talked about their cancer treatment, fearing that the side effects of chemoradiotherapy and surgery would worsen their condition and reduce their treatment options.

The treatment is so painful. The doctors have tried everything, and I don't know any other way to treat this disease. You know, it means I'm going to die. (Participant 8)

I mainly feel that every cancer treatment is torturous for me, and every time the nurse informs me about the treatment, I am afraid of dying on the operating table. (Participant 12).

Cancer recurrence

A total of 11 participants showed higher levels of anxiety about the possibility of their cancer returning, which could significantly impact their daily life and work. They believed that a relapse meant imminent death, especially for those who had not experienced a relapse before.

I am very afraid of cancer recurrence. I often think about it when I am at work because a relapse means that the disease has worsened, and I am likely to die soon. (Participant 7)

Every time I have a cancer recurrence, I think about death, and I don't know if the next recurrence will be my last. (Participant 13)

Death situation

Although death-related experiences are a natural part of life, eight participants indicated that these experiences can be traumatic to them and often trigger extreme emotions such as fear, sadness, anger, and grief.

My father had lung cancer and died less than half a year after being diagnosed. He was really uncomfortable during that time, and since then, I have been very afraid of cancer and death. (Participant 3)

I fought cancer for a few months, and when a patient in one of my wards died, I wondered if I was going to die too. It scared me, you know, extremely scared. (Participant 16)

Perception and association

At this stage, all patients with advanced cancer subconsciously perceive a series of associations related to DA, such as loss, pain, disappearance and separation.

Loss

17 participants believed that death meant losing not only external things such as wealth and status but also the good experiences and feelings they may never have again.

A terminal tumor means death, which implies that everything I have achieved and possessed will become meaningless. (Participant 1)

The thought of losing all the good things after death fills me with endless anxiety and sadness. It’s as if I had never had anything. (Participant 11)

Pain

Facing the unknown and the near-death experience makes 13 participants feel extremely miserable, causing them to lose hope in life and severely affecting their quality of life.

Death is the unknown, unknown pain, unknown torture. It’s terrifying to even think about it…The unknown nature of death fills me with pain. No one truly knows what death entails, and this uncertainty causes me great distress. (Participant 2)

I fear the pain before dying. It fills me with anxiety. Even the thought of the pain I might experience before death prevents me from living a normal life. The process leading to death is painful and makes me extremely anxious (Participant 5)

Disappear

16/20 participants endorsed that the feeling of ‘I will disappear’ involved first the pain of gradually diffusing and melting one’s sense of self, then the loss of control, anxiety and panic of not being able to hold on to anything after feeling that one no longer exists.

All my life I have been “me,” and 1 day I will not even be myself. I'll be gone forever, longer than I've been alive; I am not me anymore, and I didn't know what it felt like to be alive. The thought of “nothing” really scares me. (Participant 15)

I'm afraid the world will still exist, but I will never, ever wake up. The thought of it gives me a creepy feeling. (Participant 19)

Alone

12 participants expressed sadness for their family members and friends after their death. As parents, children and spouses, they could not accept that their death would cause great grief to their loved ones. They believed that being a patient with advanced cancer meant being destined to be alone and that loneliness would also be transferred to their loved ones on their death.

A person’s death, for the world, is just a grave, but for the people I love and who love me, it feels like the whole world is buried in that grave. (Participant 9)

After all, I am alone. There is no other person, no other god who can help me bear or avoid death. I can only face death alone. (Participant 17)

Defence and control

In general, all participants had expressed that when faced with uncontrollable cancer progression, unknown death, uncertain future and resulting DA, they would first gradually alleviate their DA in order to maintain their treatment confidence and hope for survival by adopting internal defence mechanisms or seeking external assistance in a short time.

Sink into confusion

A total of six participants reported that DA could cause patients with advanced cancer to lose themselves in feelings of nothingness and helplessness. Sometimes they had a blurred sense of themselves and sometimes they lost their sense of worth.

Sometimes I don't know who I am. Lying alone in bed at night, thinking of cancer and death, I don't know what I was put on this earth for. What’s the point? (Participant 11)

Which came first, tomorrow or death? I didn't even have the energy to worry about it, I had no chance of healing and no future goals. (Participant 10)

Out of the moment

There were 6/20 participants who endorsed that they have a degree of psychological denial about death, and it was difficult for them to bear the emotion of death occupying their minds and hearts for a long time in the present moment. Instead, they chose to dwell on the good memories of the past or obsessed with future thoughts about death.

When I get into a funk, I think back to when I was healthy, and I wish I could go back to that. I really want to escape from the present, everything in the present is making me miserable. (Participant 14)

I would reduce my anxiety by imagining a future where I would be cured of my cancer, living and working again. (Participant 18)

Avoidance tendency

Avoidant tendencies often helped participants temporarily reduce the discomfort of DA, but in the long run, increased their fear of death and made them more unwilling to accept it. A total of eight participants reported taking avoidance measures to relieve the anxiety of death.

It’s been a long time since I was diagnosed, but I still can't believe I have this disease. Every time I go to the hospital for a cancer check-up, I'm afraid to look at the results. (Participant 1)

I and the people around me, will not talk about the death of this advanced cancer, once mentioned to my husband, he interrupted me. (Participant 3)

Transformation and acceptance

When the participants’ DA was aroused, they might have responded positively over time by embracing life more fully, retreating into a deeper posture of psychological transformation and adaptation.

Internal and external integration

Nine participants said positive self-coping and perceived support from the outside world were powerful tools to prevent participants from falling into an endless cycle of DA.

I know that nothing is happier than being alive at present, and even if my disease is terminal, I will actively treat it. (Participant 1)

The care of my family and the encouragement of my friends are the solid backings for me to stick to it. Of course, I do not want to part with them. Every time I feel sad, they come to enlighten me (Participant 13)

Active living

Six participants believed that living actively and completing some regrets at the end of life not only alleviated their fear and anxiety about death but also helped them understand the meaning of death and the purpose of life.

In short, how can I die when so many things on my life dream list have not come true? In order to better face death, I will face it with a positive attitude. (Participant 7)

I guess I will try my best to make up for some of my regrets, such as seeing the people I care about, such as eating the things I couldn't afford before. (Participant 15)

Living in the present

As a component of individual self-attitude and self-evaluation, five participants believe that self-esteem could reduce the body’s perception of pressure and encourage participants to enhance their sense of self-worth by accepting themselves and following self-worth standards, so as to reduce the level of DA.

Instead of obsessing over what might happen later, seize and live in the moment, I always told to myself, accept yourself as you are now, and live up to each day. (Participant 8)

I'm actually lucky in some ways to know how much time I have left because I'm going to live the rest of my life exactly the way I want to live it, doing the things that I find worthwhile. (Participant 20)

Discussion

This is the first study to determine the psychological adjustment to DA in Chinese patients with advanced cancer. Previous studies have highlighted that psychological problems in end-stage patients were not adequately dealt with in the healthcare system.^18–21 Focusing on the psychological aspects of advanced cancer might help patients with cancer and their relatives cope with death, thereby improving the quality of life during the palliative period.^{22 23} However, patient-centred somatic symptom interventions to improve end-of-life quality often have a limited impact.²⁴ In addition, a lack of knowledge about the issue of patient death could lead to uncertainty about how best to support their psychological needs. DA, as one of the most common psychological problems plaguing patients with advanced cancer, was often studied by quantitative methods. It is necessary to understand the adaptation process and coping strategies for DA in patients with advanced cancer and get rid of some communication barriers to better psychological nursing in their end of life by qualitative research, which is used to gain insight into the context, culture and palliative care practices experienced by patients.

In this study, the cancer diagnosis, treatment, recurrence and death situation made participants aware of their death and provoked DA that was shaped by individuals’ death attitudes. This stage may be the best time to screen and intervene for DA in patients with advanced cancer.^{18 19} After the participants experienced DA, they had a series of related perceptions and associations such as loss, pain, disappear and alone. This was consistent with what most studies had found.^{25 26} Many patients with cancer found that it was difficult to talk to family members about their fears and anxiety because their families were also suffering, and the patient did not want to upset them.²⁷ After being affected by DA, patients tended to shift their attention, defence and control DA to deny the fact that they were terminally ill first.²³ While these measures could be useful, they might also suggest that they inevitably brought death to the forefront of their thought processes, which in itself might increase DA levels.

Previous studies demonstrated that avoidance could be a maladaptive form of coping since it prevented any opportunity to develop tolerance of uncomfortable thoughts, feelings and experiences.^{28 29} While providing short-term relief from DA, avoidance might prove detrimental to overall well-being and quality of life.²⁹ Among the powerful theories related to DA, terror management theory includes avoidance strategies in proximal defence, and distal defence includes cultural worldviews and self-esteem,³⁰ which may underlie the eventual acceptance of DA in patients with cancer. In Kubler-Ross’s five-stage model³¹ and Buckman’s three-stage model,³² the ultimate psychological response to death and dying is usually acceptance, which is also consistent with the findings of this study. Thus, the proximal defences may eventually reinforce the anxiety and make death more threatening. The final coping strategies that are actively confronting and meaning-based might better facilitate death acceptance.^{33 34}

In terms of national history and cultural background, people often have different views on death.³⁵ In Western societies, death is usually considered taboo, leading to everyday conversations being suppressed or rejected, and isolating these topics in specific environments such as hospitals, to prevent causing distress to those who may be approaching the end of life.³⁶ In contrast, as mentioned by the participants in the memo of online supplemental file 2, cultivating death acceptance as ‘a natural part of life, and outside of one’s control’³⁰ was the idea preached in the background of traditional Chinese culture and was also the recommended approach to treating DA.³⁷ According to the cross-country comparison of expert assessments of the quality of death and dying,³⁸ the Chinese ranking rose from 71st in 2015 to 53rd in 2021. Exploring the DA of Chinese patients with advanced cancer would help increase their attention to the problem of death and further improve the effect of psychological nursing and the quality of death.

Even more to the point, how to accelerate the process of patients with advanced cancer to finally reach acceptance of the DA mindset deserves further exploration. Acceptance and commitment therapy (ACT) can help patients face their negative emotions, accept their situation and improve psychological flexibility by setting meaningful goal-based self-values.³⁹ ACT has been confirmed that it can improve negative emotions such as anxiety and depression in patients with cancer.³⁹ Thus, ACT may to some extent help patients with cancer cope with DA, enabling them to better face the uncertainty of life and regain confidence and positivism. To our knowledge, no study has yet confirmed the effectiveness of ACT in the treatment of DA in patients with cancer, which may be an area worth exploring in the future. However, it is necessary to determine its suitability based on the individual circumstances of patients with advanced cancer, and the ACT is generally recommended to be conducted under the guidance of a professional therapist.

Several limitations of this study warrant attention. This study was only conducted in a single comprehensive cancer centre in China. In countries with different cultural backgrounds, people might have different views about DA. Therefore, the findings may not be generalised to other countries. Moreover, although the interviewers were experienced and trained in conducting qualitative research, the cultural background and experience of the authors may have influenced the interpretation of the data. Next, there may have been both a sampling and a participation bias in that those with insight but a poor reaction to the information may not have consented to participate. In the future, multi-centre qualitative interviews on DA in patients with advanced cancer can be conducted to deeply understand their thinking about death in different countries and cultural backgrounds.Additionally, the implementation of potentially effective psychological interventions for patients with advanced cancer (such as ACT) can be further explored, and it is essential to consider the preferences of patients and their families, as well as address the ethical considerations associated.

Conclusion

Despite some of the above limitations, this study improved the methodological rigour of research in this area by providing a new theory-based actionable goal framework to improve psychological adaptation to DA in patients with advanced cancer. There had been many studies on DA in patients with advanced cancer, but when they came to talking about death, they often had a ‘don’t ask, don’t tell mentality’. The results of this study provide theoretical support for the best intervention time, targeted psychological intervention content and possible effective specific intervention measures for DA, so as to reduce the psychological distress of patients with advanced cancer, improve the level of psychological adjustment and enhance the quality of life in palliative care.

Data availability statement

Data sharing not applicable as no datasets generated and/or analysed for this study.

Ethics statements

Patient consent for publication

Consent obtained directly from patient(s).

Ethics approval

This study involves human participants and was approved by the Medical Ethics Committee of Hunan Cancer Hospital (Scientific Research Fast review 2022 [22]). The patients/participants provided their written informed consent to participate in this study before taking part. Written informed consent was obtained from the individual(s) for the publication of any potentially identifiable images or data included in this article.