Qualitative study of spousal emotional experiences of taking care of dying patients

Abstract

Background

Spouses caring for cancer patients in the terminal phase often grapple with significant physical distress when faced with the impending death of their partners. Regrettably, the personal emotions and mental health challenges of caregiving spouses are commonly overlooked. This study utilized qualitative research methodologies to delve into the emotional experiences of spouses as they provide care to dying patients.

Methods

Utilizing a phenomenological research approach, this study employed purposeful sampling to select 11 spouses of patients in the terminal phase of cancer who were hospitalized at Taizhou Hospital in Zhejiang Province from June 2024 to August 2024. Semi-structured in-depth interviews were conducted to understand the caregiving experiences of spouses during the end-of-life period. The interview data were organized and analyzed using Colaizzi’s seven-step method. We followed the Consolidated Criteria for Reporting Qualitative Research.

Results

The study collectively extracted 3 main themes and 12 subthemes: (1) positive and negative emotional experiences (including deep gratitude, valuing the time spent together, a shift in life’s priorities, contemplation of the essence of life and a transformation in life philosophy, a sense of helplessness and confusion about life and death, emotional exhaustion, feelings of loneliness and helplessness, and heart’s inability to endure); (2) caught off guard by the changes (leading to death anxiety and a state of high alert, panic-stricken and fearful); and (3) the pain of parting, piercing to the heart and soul (deep attachment to the spouse, the sorrow and pain of parting).

Conclusion

During the process of caring for patients at the end-of-life stage, spouses may experience a range of negative emotions, which can threaten their mental health. Medical staff should pay attention to the well-being of patients’ spouses while providing care to dying patients. They should offer psychological support and care tailored to their spouse’s actual situation, establish a supportive care system, enhance caregiving abilities, and alleviate grieving emotions.

Background

Cancer is the leading cause of mortality globally, and its escalating incidence presents a formidable public health challenge. In 2020, the global incidence of new cancer cases and related deaths increased to 19.293 and 9.958 million, respectively [1]. China, with the world’s largest cancer patient population, documented 4.569 million new cancer cases and 3.003 million deaths in the same year [2]. As the cancer diagnosis rate increases, the impact ripples, affecting an increasing number of spouses grappling with the profound implications of this disease.

The end-of-life stage, resulting from disease or injury, is characterized by the impending failure of major organ functions, with signs indicating that life activities are about to end, and death is inevitable. It represents the final stage of life activities and the beginning of the dying process, typically referring to the last days or hours of life [3]. Patients in advanced stages of cancer often experience a decline in their physical function, intensified pain, and increased anxiety and depression [4]. These factors significantly diminish the quality of life of patients and exacerbate the burden on caregivers.

In China, a family-centered society deeply rooted in Confucian values, family members maintain close-knit relationships [5]. These cultural norms emphasize ‘love and responsibility’ within the family structure [6]. Marriage plays a central role in family bonds [7] and the care of ill family members is perceived as an inescapable duty among Chinese individuals [8]. In particular, spouses are expected to share the burdens and joys of life under traditional values [9, 10]. During the cancer treatment journey, spouses, as primary caregivers, shoulder a substantial caregiving load; as life partners, they witness the patient’s suffering due to disease progression and experience heightened traumatic stress and anticipatory grief. Often considered an ‘invisible’ patient population [11, 12], spouses face greater caregiving burden, more negative coping mechanisms, and poorer health outcomes [13, 14]. Their health is significantly impacted [15, 16], especially as the patient’s symptoms worsen in advanced cancer stages [17].

When a cancer patient reaches an advanced stage, family caregivers are challenged by managing the patient’s deteriorating physical condition and escalating psychological distress. They also grapple with a sense of loss of control and anticipatory grief [18, 19].

As early as 1990, the World Health Organization proposed that patients and their caregivers be regarded as indivisible entities in need of protection [20]. However, the current medical practice often focuses solely on the patients themselves as recipients of care, especially during the end-of-life stage of cancer, and the attention of friends and family is also almost exclusively concentrated on the patient. The actions of the healthcare staff caring for dying patients often fail to consider the care of family members. During this period, spousal caregivers in particular bear tremendous psychological and physical pressure, and their emotional fluctuations can sometimes be even more intense than those of patients [21]. However, spouses are often seen as merely assistants to medical staff in caring for patients, with caregiving considered their responsibility and duty. The individual feelings and psychological and physical issues faced by this group are thus frequently overlooked, which to some extent affects the qualities of their caregiving and life [22].

Currently, research on spouses tends to focus on their care for terminally ill patients, while insufficient attention has been paid to the spouse’s emotional experiences of taking care of dying patients. The current study aimed to explore the emotional experiences of spouses of taking care of cancer patients during the end-of-life stage. In the context of Chinese culture, providing a basis and suggestions for alleviating the caregiving burden of spouses during the terminal phase and enhancing their positive experiences.

Methods

Study design

This study employs a phenomenological approach, utilizing face-to-face semi-structured interviews to gain an in-depth understanding of the caregiving experiences of spousal caregivers who are tending to their dying spouses at the end of their cancer journey in the Taizhou Hospital of Zhejiang Province. The phenomenological approach, as a qualitative research methodology, is tailored to comprehend and elucidate the experiences and emotions of individuals as they navigate the same phenomenon from a first-person perspective, offering a rich and nuanced account of their lived experiences [23]. This study employs qualitative research primarily because of the strong subjectivity, individuality, and complexity inherent in caregiving experiences, which cannot be fully expressed or reflected by quantitative scales. Furthermore, the study’s subject group was in a special period of losing or losing their loved ones. The use of semi-structured interviews in qualitative research allows for a more in-depth and comprehensive understanding of individuals’ nuanced and dynamic experiences and feelings in a specific cultural context. We applied the COREQ checklist as a guide for the project [24], collected data through face-to-face semi-structured interviews, and analyzed the data using Colaizzi’s phenomenological seven-step analysis method [25].

Participants

This study utilized a purposive sampling method to select 11 spouses of patients in the terminal phase of cancer who were hospitalized at the Taizhou Hospital of Zhejiang Province from June 2024 to August 2024 for interviews.

The inclusion criteria were as follows: (1) the caregiver was the patient’s spouse, who had taken on the primary caregiving and medical decision-making responsibilities during the patient’s treatment period for ≥ 1 week; (2) the care recipient was an end-of-life stage cancer patient diagnosed with Stage III or IV according to the international TNM cancer staging standard, with the possibility of the disease continuing to worsen [3]; (3) the caregiver had been providing more than 8 h of care daily, recent, continuous care for more than 4 weeks; (4) the patient’s disease status and expected survival time was clear; (5) there was clear language expression and no cognitive communication barriers; (6) informed consent and voluntary participation in this study had been given.

The exclusion criteria were as follows: (1) the fact that the patient was getting worse and dying was unacceptable, (2) the spouse caregiver had a history of mental illness or cognitive dysfunction, (3) participation in this study was refused.

Data collection

Data collection was facilitated through face-to-face interviews using a semi-structured interview guide specifically tailored for this study and informed by our unique contextual insights. The guide contained an outline of open-ended questions designed to promote in-depth research dialogue [26] (see Table 1). All interviews were conducted by the first author of this study, who holds a master’s degree, has received systematic study and training in qualitative research, masters qualitative research methods and interview skills, has extensive experience in qualitative research, has a long working experience with patients with cancer, and works as a nurse manager in the unit. The second author meticulously recorded notes during the interviews, which served to provide background information pertinent to discussions for future reference.

Table 1 Semi-structured interview guide

The first author approached eligible interviewees and invited them to participate after providing a clear explanation of the study’s purpose. After obtaining their written informed consent, the first author scheduled appointments for interviews. Given the unique constraints on the subjects and timing of data collection, it was essential to communicate extensively with the spouses of patients at the end-of-life stage, who have often dedicated most of their time to accompanying their partners. Scheduling interviews considered the specific medical conditions of each patient, aiming to select time slots when other family members could assume caregiving responsibilities. In cases where no substitute was available, advanced communication with the ward’s attending nurse was established to ensure that the patient received the necessary care and attention during the interview period. All interviews were held in a quiet, private room within the hospital, and typically lasted between 30 and 40 min. To ensure the accuracy of the data, the interviews were documented through a comprehensive process that included synchronous recording, note taking, and real-time reflection. After the interviews, the participants’ perspectives were clarified and confirmed. The interviews were conducted in the participants’ native language (Chinese). Upon completion, two physicians with a strong understanding of the subject matter and relevant professional terminology translated the content into English to ensure translation accuracy. They were involved in the design of the study from beginning to end and were familiar with the specific terminology used in nursing research. Data collection ceased when saturation was reached, a point at which new interviews no longer contributed novel information. The sample size was considered saturated when recurring information indicated that no new themes or topics had emerged. No repeated interviews were conducted as part of this study. In this study, saturation was attained after conducting interviews with 11 spouses of patients.

Data analyses

The collected data were transcribed word-for-word into text by the principal investigator. This process ensured a meticulous record of the interviews, capturing every detail articulated by the participants. The principal investigator and co-author independently conducted the initial coding of the data, surfacing the preliminary themes and subthemes. Colaizzi’s phenomenological seven-step method [27] was used for the data analyses to extract themes and sub-themes regarding the perception of spousal emotional experiences of caring for dying patients (see Table 2). Any disagreement between the researchers was resolved by making decisions through discussion until a consensus was reached. The final transcribed data, as well as the extracted themes and subthemes, were sent to the participants simultaneously, and all participants were contacted again. This study met the consolidated criteria for qualitative studies (COREQ).

Table 2 Colaizzi’s seven-step process for qualitative data analyses

Ethical considerations

The study was thoroughly reviewed and subsequently approved by the Ethics Committee of Taizhou Hospital, Zhejiang Province, China (Approval Number: KL20240626). All research procedures were conducted in strict accordance with the ethical principles of the Declaration of Helsinki [28]. Prior to the commencement of the study, the participants were provided with a comprehensive explanation of their objectives. Furthermore, they were assured of the confidentiality of their data, which would be used solely for the purposes of the study. To safeguard the privacy of the interviewees, the interviews were conducted anonymously with personal identifiers replaced by numerical codes. Written informed consent was obtained from all participants. The interviews were scheduled based on participants’ availability and convenience.

Rigor

Rigor was maintained by adhering to the criteria for trustworthiness: credibility, confirmability, dependability, and transferability. During the interviews, the researcher followed a structured outline while actively listening to and posing relevant questions. The researcher also paraphrased and summarized participants’ responses in a timely manner, maintaining an objective stance without leading or evaluating their statements or interrupting them unnecessarily. This methodological approach significantly enhanced the overall credibility of the study. After transcribing the interview recordings, we returned them to the participants for verification to ensure data authenticity, thereby reinforcing the rigor and credibility of our research. In conducting data analyses, two researchers collaborated closely to analyze and code the interview transcripts. We wrote memos and reflections to clarify the coding schemes and thematic content. When differences in opinion arose during discussions with other researchers, they sought participant verification to ensure accuracy and enhance the credibility of the analytical results.

Results

The demographic composition of the 11 participants included 5 males and 6 females, 32.0–56.0 (average 42.9 ± 7.9) years old. A summary of the demographic data is presented in Table 3. The analysis identified 3 main themes and 12 subthemes. Themes and subthemes are detailed in the thematic matrix (see Table 4).

Table 3 Characteristics of participants interviewed

Table 4 Summary of themes and sub-themes

Theme 1: The positive and negative emotional experiences

The complex and profound emotional fluctuations and changes experienced by spouses in exploring the situation of accompanying and caring for the dying patient as the patient’s condition progressively deteriorated and a variety of other influencing factors are intertwined. These emotional changes were categorized into two levels: positive and negative.

Subtheme 1.1: Positive emotional experiences

Subtheme 1.1.1: Deep gratitude

As the patient’s life comes to an end, spouses find themselves grateful for the patient’s presence and companionship.

The majority of respondents said that the patient’s company also gave them great spiritual support during the near-death period of their spouse’s life, making this difficult time no longer lonely, or even feeling grateful. A9: “Every day when I open my eyes and see him by my side, I feel very at ease and content.”Some interviewees expressed their own deep gratitude for the patient’s survival during the dying period of their life, even though they were facing an irrevocable fate of parting. A11: “The two of us have been together for decades and have become very accustomed to it. As long as he is still alive, I am very grateful to God in my heart (smiling).”

Subtheme 1.1.2: Valuing the time spent together

In the final stage of life, the spouse accompanies the patient and cherishes every moment in their interaction, cherishing this supportive companionship. The spouse knows that such moments will become fewer over time, making each spent together particularly precious. During this special period of near-death life, spouses are often grateful for every moment of the patient’s companionship. One participant (A5) stated, “I don’t think about anything else at home right now. I only keep his affairs in my heart and focus on accompanying him. I do not want to be distracted by anything else.”At the end of the patient’s life, spouses preferred to enjoy the present with the patient. Some respondents said that they would treasure every moment they spent with each other, instead focusing their attention entirely on each other’s presence. Another participant (A7) stated, “When we were in the ward, we often didn’t have much conversation, but I would gently hold her hand, adjust the angle of the hospital bed so that she could lie down in the most comfortable position, and stay quietly by her side, which made her feel very happy.”

Subtheme 1.1.3: A shift in life’s priorities

In the context of the traditional Chinese end-of-life companionship culture, spouses are obliged to take care of patients. Spouses believed that they needed to be by the patient’s side at all times to spend the final stage of the patient’s life together. Therefore, during the patient’s dying period, spouses almost wholeheartedly devoted themselves to the patient, giving up their social and personal time. One participant (A4) stated, “There were other patients’ and family members’ noisy voices in the ward, but at that time I almost completely blocked out external interference. If he frowned or moaned lightly, I would immediately notice it and adjust the position of the pillow according to his needs, or massage the muscles that had become stiff due to prolonged bed rest, to make him feel more comfortable (sighing).“A number of interviewees indicated that during this particular period, they put the patient at the center of all their actions and were fully committed to caring for the patient. Another (A3) stated, “I do not care about anything else while taking care of him. For a while, I put aside everything else.”

Subtheme 1.1.4: Contemplation of the essence of life and a transformation in life philosophy

In the course of caring for a patient over a long period, the spouse’s existing perceptions of life and death are constantly impacted as they are confronted with the patient’s suffering and the fact that they are about to pass away. Caring for and accompanying the patient also forces the spouse to slow down the pace of work and life, reweigh the gains and losses in their personal career, and rethink the meaning and essence of life. One participant (A10) stated, “I used to think that career and money were the most important things, but now I feel that compared to life, these things are really nothing, and good health is the most important.” Another participant (A4) noted that, “Life is very fragile. Work, career pursuits, and money have become meaningless. “Some spouses have made positive improvements in their habits during the caregiving process. Another participant (A7) stated, “In the past, I basically didn’t go to the hospital for checkups when I had any physical discomfort, but now, whenever I feel some physical discomfort, I go to the hospital for a physical checkup.”

Subtheme 1.1.5: A sense of helplessness and confusion about life and death

Faced with the deteriorating condition of their dying spouses, most interviewees were occupied with a sense of helplessness and deep confusion about life and death. They were filled with helplessness regarding the force majeure of fate. In addition, they were full of unforeseeable confusion and fear about the future, they did not know how their spouse’s condition would develop, and they did not know how they would cope with the loss of their spouse. This sense of uncertainty about the future, intertwined with a sense of powerlessness about the current situation, constitutes an indescribable heavy burden in the heart. One participant (A4) stated, “Although the outcome is difficult to accept, reality cannot be changed. Having this disease is truly beyond anyone’s control.”Another stated (A8), “He sat on bed at night panting and could not sleep at all. The doctor gave him medicine, but it did not seem to be effective. I sat beside him, watching him and patting his back. I could not help him with anything else; I felt so helpless (sobbing).”

Subtheme 1.2: The negative emotional experiences

Subtheme 1.2.1: Emotional exhaustion

From the moment the patient is diagnosed with cancer, the spouse, as their closest loved one and caregiver, witnesses the entire process of the patient’s illness and treatment and is prone to negative emotions, such as anxiety, helplessness, and depression. As the condition of the dying patient worsens, the patient’s various organs fail, and their self-care ability becomes almost zero. As the main caregiver, the mental pressure borne by the spouse peaks [29]. One participant (A10) stated, “I’m really feeling mentally exhausted right now. Sometimes I even think it would be nice to have a place to hide. However, the reality is that I have to continue to take care of him, and I cannot just leave him. I cannot tell anyone about the pain in my heart (rubbing my forehead).“Another participant (A8) stated, “Every time he groans in pain or experiences new changes in his condition, my heart feels as if it is tightly gripped, and the pain is unbearable. I often cannot sleep at night, tossing and turning, and my mind is filled with the uncertainty of his condition and future.“Due to the long-term caregiving burden and pressure of impending loss, most spouses feel physically exhausted. Another participant (A3) noted, “Since he became seriously ill, I have almost become a full-time nurse. I am busy from morning to night, with almost no rest time, always ready to turn him over, scrub him, and feed him. I often have back pain and cannot stand up to walk. I am also constantly worried about his condition and afraid that he will suddenly pass away. I often secretly wipe my tears at night.”

Subtheme 1.2.2: Feelings of loneliness and helplessness

The respondents generally had complex emotional experiences when caring for spouses with advanced cancer. They experienced psychological distress due to the ongoing deterioration of their spouses’ condition and the limited efficacy of treatment, which induced a profound sense of helplessness and uncertainty in providing effective care. In addition, they harbored concerns about whether or not they were adequately meeting their spouses’ needs and providing sufficient emotional support, further intensifying their psychological burden. Furthermore, respondents faced an overwhelming sense of loneliness, as they anticipated the impending death of their spouses. This loneliness was rooted in not only grief and sorrow over the loss but also apprehension and anxiety about the uncertainties of the future, such as coping with life’s challenges independently and overcoming the psychological and emotional shadows cast by the loss. This profound sense of isolation exacerbates feelings of desperation and helplessness. One participant (A1) stated, “Every time he moaned in pain or there was a new change in his condition, my heart felt like it was being clutched tightly, and I got so caught up in it that I often could not sleep at night, tossing and turning, my mind filled with his condition and the uncertainty of his future (sobbing).”Another participant (A9) stated, “Since he fell ill, I have taken care of him. He often worries about what I will do in the future, and I often feel lonely and helpless. I just want him to live, because I need him.”

Subtheme 1.2.3: Heart’s inability to endure

Refers to the feelings of a spouse who is deeply grieved and powerless to change the status quo when faced with the pain and suffering of a loved one during the period of imminent death. This emotional state reflects the kindness, sympathy, and helplessness of human nature, as well as the fragility and helplessness of human emotions in the face of the ultimate stage of life. One participant (A11) stated, “Watching him suffer like this, I also feel very uncomfortable, with indescribable pain.” The spouse witnessed the pain and suffering endured by the dying patient, and the anguish intertwined within was unspeakable. Another (A2) stated, “Watching her in pain, my heart feels like it has been pricked. I feel heartbroken, but I cannot change anything.”

Theme 2: Caught off guard by the changes

This refers to a series of reactions that occur in a spouse due to the deterioration of the terminally ill patient’s condition and their impending death under the multiple pressures of heavy caregiving burdens and long-term mental tension, including unexpectedness, panic, and confusion.

Subtheme 2.1: Leading to death anxiety and a state of high alert

Death anxiety refers to the state of fear, panic, and other distresses that an individual experiences by being aware of the significant and conscious threat of death [28].

While learning that a loved one is dying, spouses are often in a state of heightened alertness and vigilance. They are constantly checking for changes in the patient’s condition, fearing that they will miss any subtle clues or signals. They must always be ready for possible emergencies, such as the sudden deterioration or passing of the patient. One participant (A3) stated, “A few days ago, a patient in the same ward was able to talk to us in the morning and passed away by noon, and I fear the same for my husband.” Another participant (A6) noted, “Now he can talk and laugh with me, but I also know in my heart that his illness has a foregone outcome (death), so it’s just a matter of time, but I still don’t want to lose him in my heart.” Still another (A9) stated, “Ever since the doctor told me there’s no cure, it’s like being sentenced to death… (long silence) and I am afraid of that day every day and night.”

Subtheme 2.2: Panic-stricken and fearful

The spousal caregiver is in a state of panic due to deep concern about the patient’s deteriorating condition and diminishing signs of life. This emotional state cannot be summed up as simple fear or worry; it is more like a compounded emotion of deep, persistent panic, and fear intertwined. The spouse’s mind is filled with deep apprehension about the imminent possibility of losing the patient, and every change in the patient’s condition alarms them. One participant (A11) stated, “A few mornings ago, I suddenly noticed that my partner’s breathing had become abnormally rapid. His face was so pale that it was frightening, and his lips began to turn slightly purple. My heart tightened painfully, and I found myself gripping the bedsheets unconsciously. I felt blankness in my mind, unsure of what to do, and started fumbling for my mobile phone to call for a doctor (looking worried).”

Theme 3: The pain of parting, piercing to the heart and soul

This refers to the behavioral and emotional level of spousal coping as a result of reaching the end-of-life stage for the dying patient, being aware of the division between life and death, and acknowledging the impending separation of the couple.

Subtheme 3.1: Deep attachment to the spouse

When spouses witness their partners gradually approaching the end of life, facing an irreversible state of imminent death, their hearts are filled with an unbreakable attachment to their partners, and the spouses’ hearts are filled with endless thoughts and reluctance to part with their loved ones. Participants shared their experiences. One (A9) stated, “When he was so sick that he was about to leave this world, he felt emotional discomfort. I did not want him to just leave like this, and I hope to spend more time with him and take care of him (shrugging shoulders).” Deeply mixed feelings, the pain of witnessing the imminent death of a companion for many years, and extreme reluctance to face the reality of the impending loss of a loved one abound among these individuals. Another (A10) stated, “When it comes to this matter, I feel mixed emotions in my heart. Looking at him, the person who has accompanied me through so many years of ups and downs and shared joys and sorrows, now lying in bed due to illness, I feel uncomfortable. Watching him gradually lose weight, my heart is twisted like a knife, I really do not want him to leave me like this.”

Subtheme 3.2 The sorrow and pain of parting

The spouse usually undergoes an extremely difficult and complex psychological and physiological transition period, in which the spouse must not only face the harsh reality of the loss of a loved one but also endure the enormous emotional shock that follows, a process full of unspeakable physical and mental pain as well as profound suffering. One participant (A7) stated, “Talking about death is very heavy but also practical. No one wants to face it, and all want to stay away, but death cannot be avoided. However, for surviving family members, the pain of losing loved ones is really unbearable (crying).” Some interviewees said that the inexpressible sadness they felt when they thought of their spouse’s impending death and said goodbye to their partner for good made them realize the cruelty of life’s impermanence and the extreme pain they felt when faced with the loss of a loved one. One participant (A4) stated, “We’ve been through so much together, and now we’re going to never see each other again. When it’s late in the night, I can’t stop my tears from flowing.”

Discussion

Currently, much research focuses on the level of spousal care provided to patients with advanced cancer, while there is less emphasis on exploring the emotional experiences of spouses caring for dying patients during the terminal phase of cancer. This study conducted in-depth interviews with 11 spouses of hospitalized patients in the terminal phase of cancer to explore their emotional experiences during this special period. The key results showed that the emotional experiences of spouses caring for terminally ill cancer patients were diverse.

When a patient is in the advanced stages of cancer, family caregivers are tasked with managing worsening physical dysfunction and escalating psychological distress. They may also experience feelings of loss of control and anticipatory grief [30], which can further exacerbate caregiver burden. In China, the caregiving role of spouses is becoming increasingly prominent with the increasing proportion of empty-nest families [29]. They not only bear the heavy responsibility of taking care of family members’ daily lives but also provide emotional, informational, and economic support in disease diagnosis, assisting important decision-making, and other aspects [31, 32]. Especially during the palliative treatment phase, prioritizing the accompaniment of a patient through their final journey of life is essential within the family context. At this particular stage of life, patients and their families usually have special physical, psychological, social, and spiritual needs that require support from healthcare professionals [33]. While adhering to the concept of “whole person, whole family, whole process, whole team”, how to provide solid and effective support for the families of terminal cancer patients has become an important responsibility of nursing staff [34, 35].

The present study found that, as the primary caregiver for terminally ill cancer patients, spouses often experience a myriad of emotions, with negative feelings being particularly pronounced as they accompany and care for patients nearing the end of life. Confronted with a seriously ill partner, they are subjected to intense physical and emotional fatigue coupled with feelings of loneliness and helplessness. When faced with the patient’s fluctuating condition, spouses are often caught off guard, which can trigger death anxiety and heightened vigilance. In the face of the impending reality of their partner’s demise, spouses grapple with a profound sense of helplessness and existential confusion regarding life and death. They also experience deep attachment to their loved ones and are overwhelmed by sorrow and pain associated with impending loss. During the period when the patient is on the brink of death, as the condition worsens, the patient’s consciousness gradually becomes blurred, and various physiological functions of the body tend to decline, resulting in the patient being unable to take care of themselves. The spouse then needs to invest substantial time and energy in caring for the patient’s body.

Influenced by Chinese Confucian culture, the spouse often puts the patient’s needs first, ignoring their own caregiving ability and psychological needs [36]. The survival time of patients with advanced cancer is very limited, death is an inescapable fact, and the ‘imminent departure’ of patients is something that they must face and accept. As the patient enters the dying period, the spouse also faces the major event of losing their loved one. For spouses, dying is a very harmful and consequential family situation. In addition to handling the patient’s aftermath, spouses also face significant changes in their roles and functions in terms of family, social, and other aspects owing to the death of patients [37]. While attending to the needs of dying cancer patients, healthcare professionals must also extend their focus to address the physiological, caregiving, and emotional needs of their spouses during the terminal phase of cancer. This holistic approach aims to assist spouses in coping with and accepting the imminent deaths of their loved ones. Whenever possible, patients should be provided quiet, comfortable, and private end-of-life wards to ensure a dignified and peaceful environment. In addition, efforts should be made to fulfill the psychological needs of spouses for companionship in the final stages, effectively channeling their negative emotions and offering support to mitigate their grief and distress.

The present study also found that spouses had positive psychological growth when accompanying and caring for dying patients. Previous studies [38] have indicated that the experience of caring for a cancer patient gives spouses a new perspective on life and the importance of good health and life. The results of this study indicate that, in the process of caring for terminally ill patients, the pace of their spouse’s life is forced to slow down, and they begin to feel more deeply the fragility of life and the preciousness of their family, prompting them to make positive changes in their lifestyle habits. Throughout the caregiving journey, spouses uphold their marital vows, embrace the role of companionship, accumulate caregiving expertise, and appreciate the significance and value of their supportive presence, which in turn fosters personal growth and development [39]. Healthcare professionals can leverage the principles of positive psychology to guide spouses in recognizing the positive aspects of caregiving, stimulating positive emotional responses, mitigating negative emotions, such as pain and burden, and enhancing their ability to manage the challenges of companionship and care.

This study highlights the fact that, as a patient’s condition worsens and they approach the end of their life, their spouse is forced to confront the harsh reality of imminent separation or permanent loss. Spouses are often overwhelmed by the grief of losing their cherished partner. Consistent with previous research [40, 41], spouses experience more intense grief, face a longer journey to emotional recovery, and confront more significant physiological and psychological challenges than other family members, which can lead to an increased risk of mortality. Medical professionals should be attentive to the bereavement of spouses, intervene proactively, and offer the necessary support to help spouses enhance the quality of companionship before the patient’s death. This support aims to fulfill the spouses’ desire to be present during the patient’s passing, minimize regrets, and achieve the goal of peaceful parting for both the patient and spouse.

Shifting the focus to the patient’s living phase and concentrating on the emotional experiences of spouses of end-of-life cancer patients can enable the provision of more comprehensive support. Future research should concentrate on the emotional experiences of spouses before a patient’s death to lay the theoretical groundwork for developing intervention programs designed to support these individuals.

Limitations

The present study has several inherent limitations. First, the variable durations of the near-death periods in cancer patients, compounded by the inaccuracies in the survival estimation tables, complicate the determination of the appropriate data collection time window, potentially introducing biases. It is crucial to explore more effective data collection methods that respect the sensitivity and wishes of patients’ families. Second, the study’s focus on the Chinese population may limit the generalizability of the results to individuals from different cultural backgrounds. Finally, although interviews were conducted in Chinese and subsequently analyzed and translated into English with the assistance of professional English editors to ensure fidelity, there remains a minimal risk that the translation process could have subtly influenced the study outcomes.

Conclusion

The mental health of spouses caring for terminally ill patients is threatened during the care process. While nursing terminally ill patients, medical staff deepen the concept of “family centeredness”by viewing patients and their families as closely connected and facing challenges together as a community of shared destiny. Healthcare personnel should pay attention to the mental state of spouses during the process of dying patients, actively alleviate negative emotions, and provide emotional counseling and support. At the same time, healthcare personnel should pay attention to the positive experiences of their spouse and enhance their sense of companionship and benefits for their spouse’s caregivers, strengthening grief support measures and enhancing spouses’ ability to adapt and cope with the pain of spousal loss.

Clinical implications

Spouses in the end-of-life period are susceptible to a range of emotional challenges including grief, helplessness, anxiety, and other negative effects. Healthcare professionals should tailor their approach to the specific circumstances of these caregivers and provide targeted mental health education to both spouses and patients. This includes pre-bereavement death education counseling and bolstering grief support measures to enhance the spouse’s capacity to adapt to and manage the pain associated with bereavement.