Living With Hepatocellular Carcinoma Near the End of Life: Family Caregivers’ Perspectives

Lissi Hansen

Susan J. Rosenkranz

Kathleen Wherity

Anna Sasaki

hepatocellular carcinoma, liver cancer, family caregivers, caregiving, end-of-life care, terminally ill
ONF 2017, 44(5), 562-570. DOI: 10.1188/17.ONF.562-570

Purpose/Objectives: To explore family caregivers’ perspectives of caring for patients with terminal hepatocellular carcinoma (HCC) as patients approached the end of life.

Research Approach: Longitudinal, qualitative descriptive design.

Setting: Oregon Health and Science University in Portland and Veterans Affairs Portland Health Care System in Oregon.

Participants: 13 family caregivers with a mean age of 56 years (range = 22–68 years). The majority of family caregivers were female (n = 10) and identified as White (n = 11).

Methodologic Approach: Interview data were collected from family caregivers once a month for as many as six months, for a total of 39 interviews. Data were analyzed using conventional content analysis.

Findings: Five core categories and nine subcategories were identified. From the time of the terminal diagnosis to the end of life, family caregivers felt unprepared, uncertain, and in need of information. They struggled with whether symptoms were HCC- or cirrhosis-related.

Interpretation: Nurses can support family caregivers by eliciting their knowledge and concerns, and attending to symptom presentation and interpretation and to treatment challenges. Understanding challenges caregivers experience is crucial for developing interventions that address their desire for information, support, and help along the HCC disease trajectory.

Implications for Nursing: Nurses play a critical role in preparing caregivers to understand the importance of pain assessment and management and early referral to palliative care.

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    According to a National Alliance for Caregiving (2015) report, cancer was reported by 7% of caregivers as the main condition for which their recipient needed care. The experience of caregivers who provide care for patients with brain, breast, gynecologic, colorectal, and prostate cancer has been described in the literature (Fletcher, Miaskowski, Given, & Schumacher, 2012; Li, Mak, & Loke, 2013; Stamataki et al., 2014 ). Little is known about caregivers of patients with hepatocellular carcinoma (HCC). In the United States, HCC (about 75% of all primary liver cancers) can be defined as a rare cancer, with an estimated 30,000 new cases and 21,000 deaths each year (American Cancer Society [ACS], 2017; Cancer Treatment Centers of America, 2017; Centers for Disease Control and Prevention [CDC], 2016b; Houlihan, 2015). It is the fifth estimated cause of death in men and the eighth in women (ACS, 2017). The overall five-year survival is about 17.5% (National Cancer Institute, 2016). A major contributing factor to HCC is liver cirrhosis caused by hepatitis C virus infection (CDC, 2016a, 2016b). During the next two decades, HCC mortality is predicted to increase due to nonalcoholic fatty liver disease (Vernon, Baranova, & Younossi, 2011).

    Patients with HCC, unlike patients with other cancers, suffer from cancer and liver cirrhosis, making the illness trajectory more difficult to predict. Cirrhosis itself leads to many deaths each year. Because these two conditions usually coexist, patients suffer from numerous physical and psychological symptoms. Because of these symptoms, the number of locoregional therapies (e.g., transarterial chemoembolization [TACE]) patients receive, potential long-standing family conflict because of substance abuse, and the stigma associated with an HCC diagnosis, the experience of family members caring for patients with terminal HCC may be different from that of other caregivers.

    Although the care provided to patients with common terminal cancers by family caregivers and the high burden experienced by caregivers has been well documented (Goldstein et al., 2004; Janze & Henriksson, 2014; Mori et al., 2012), little focus has been given to family caregivers of patients with HCC and their perspectives of caring for patients as they approach the end of life. In studies of other cancers, caregivers’ psychological distress and perceived burden increased (Grunfeld et al., 2004) and their skill preparedness decreased over time (Grant et al., 2013). Unmet needs reported by caregivers relate to fearing spread of cancer, balancing one’s own and the patient’s needs, and making decisions in the context of uncertainty (Butow et al., 2014).

    Research funding opportunities are available from the U.S. Department of Health and Human Services (2016) to determine the breadth and depth of end-of-life and palliative care needs of patients with advanced rare cancers and their caregivers. Research on family caregivers of patients with HCC toward the end of life is essential to discover these caregivers’ unique needs and to appropriately and effectively support them throughout their caregiving experience.

    In this article, the authors will report on the qualitative findings from a longitudinal, prospective pilot study to explore family caregivers’ perspectives about caring for patients with terminal HCC as the patients approached the end of life.

    Research Approach

    A longitudinal, qualitative descriptive design was used following this study of patients with HCC and their family caregivers. The pilot study design, procedures, data collection, and analysis methods have been described in detail elsewhere (Hansen, Dieckmann, Kolbeck, Naugler, & Chang, in press; Hansen, Rosenkranz, Vaccaro, & Chang, 2015). The study included a quantitative and qualitative component. The quantitative component included survey data on symptoms in patients with terminal HCC (Hansen et al., in press). The qualitative data reported in this article is from semistructured interviews conducted with family caregivers once a month during a six-month period. Audio-recorded interviews were transcribed verbatim and verified before analysis.


    Family caregivers were recruited from Oregon Health and Science University in Portland and Veterans Affairs Portland Health Care System in Oregon. The study was conducted with approval from institutional review boards at both institutions.


    Convenience sampling was used to obtain a sample of 13 family caregivers (one per patient) of adult patients with a diagnosis of HCC who did not meet the Milan criteria for liver transplantation. These criteria are a staging system based on the number and size of liver lesions (Freeman, 2006). Patients were at the end of life, defined as a life expectancy of one to two years. A family caregiver was defined by the patient as any adult providing help (e.g., sibling). Inclusion criteria for family caregivers were the following: (a) aged 18 years or older, (b) able to read and speak English, (c) able and willing to give informed consent, (d) defined by the patients as closely involved in their care, and (e) accompanied the patients to the liver clinic.

    Methodologic Approach

    Data Collection

    Family caregivers were informed by healthcare professionals (HCPs) about the study during patients’ scheduled appointment in the liver clinic or during a telephone conversation with their nurse care coordinator. Individuals interested in learning more about the study agreed to be contacted by the principal investigator, who contacted interested family caregivers via telephone or in person in the liver clinic and explained the study. Prior to the first interview, family caregivers who agreed to participate signed an informed consent form. All interviews were conducted in person by the principal investigator at the participants’ home or at the liver clinic. Interviews lasted 40–60 minutes. Development of the semistructured interview guide (see Figure 1) was informed by the recommendations of grant application reviewers and HCPs who work with patients with HCC and their caregivers.

    Data Analysis

    Interview data were analyzed line by line using conventional content analysis (Hsieh & Shannon, 2005; Sandelowski, 2000, 2010). Transcribed interviews were read by two team members, and codes were generated through inductive analysis of the data. The researchers met weekly to discuss coding discrepancies, agree upon a coding scheme, and develop a codebook. Similar codes were identified and grouped into larger categories and subcategories, which were then compared within each interview and across and within family caregiver cases. A case comprised all interviews conducted with an individual family caregiver. The comparison facilitated an understanding of how family caregiver perspectives varied across cases and changed with time. To ensure data credibility, analysis of the data was shared among the study investigators and reviewed for biases and to clarify the rationale for category development. Data were managed with NVivo, version 8.0.


    Thirteen family caregivers with a mean age of 56 years (range = 22–68 years) participated in the study (see Table 1). Interviews were conducted with all 13 participants for a total of 39 interviews (see Table 2). The sample size was limited because of the scope of the pilot study and the amount of data collected. The authors checked in with participants at each data collection point; a few caregivers elected not to participate in a subsequent interview because of prior obligations. Three participants were lost to follow-up because of relocation. During data collection, six patients died and two were enrolled in hospice; none were referred to palliative care.

    Familial relationship to and living arrangement with the patient varied. The authors categorized family caregivers into two groups: spousal caregivers (n = 9) and nonspousal caregivers (n = 4); collectively, they were referred to as family caregivers. Eight of the spousal caregivers were married; one couple was divorced, but they lived in the same house. The four nonspousal caregivers identified as a parent, an adult sibling, an adult child, and a partner. The patients of all nonspousal caregivers were divorced and, in most cases, had been estranged from family. Nonspousal caregivers most often took on the role of caregiver because they felt no one else would. According to one participant, “He’s [the patient] got all his friends and everything, but I’d rather be there for him because I feel like he doesn’t really have anybody but me.” Among nonspousal caregivers, one resided in the patient’s home and three lived elsewhere but visited periodically—ranging from a daily or weekly basis to monthly visits—and maintained regular (e.g., daily) contact via telephone.

    The authors identified five core categories and nine subcategories that described family caregivers’ perspectives (see Figure 2). The core categories include (a) quality of relationship, (b) response to terminal HCC diagnosis, (c) HCC progression: symptom interpretation, (d) treatment challenges, and (e) unprepared for end-of-life care.

    Quality of Relationship

    During interviews, participants frequently referred to the quality of their relationship with the patient. Spousal caregivers most often described their relationship as emotionally close and supportive. In contrast, most nonspousal caregivers described having an emotionally distant, nonsupportive relationship with the patient. Underscoring some relationships—emotionally close and emotionally distant—was the patients’ history of substance abuse and family conflict. For those with an emotionally distant relationship, tension between the patient’s history and the caregiver’s struggle to provide care frequently surfaced. One nonspousal caregiver described caregiving challenges:

    I’d be changing his pants six and seven times a day, and [the patient] would just complain about it all the time, about how he [had another bowel movement in] his pants again. So, I don’t know. Maybe he’s getting his karma if you want to look at it that way.

    Response to Terminal Hepatocellular Carcinoma Diagnosis

    The authors identified three subcategories that describe the range of family caregiver responses to the terminal HCC diagnosis: desire for information, managing the stigma, and change in lifestyle.

    Desire for information: During interviews at the first time point, all family caregivers reported having little knowledge of HCC and little to no knowledge of providing care to people with terminal HCC. Many described receiving little information from HCPs and seeking out information from alternative sources (e.g., the Internet, books) to learn about HCC, symptoms, and treatments. A nonspousal caregiver explained:

    My concern at the beginning was—[the patient had] lived here for three months, slept on the couch [while] we knew nothing about [HCC]. I did do some research on the computer and learned how serious it was.

    Managing the stigma: A few family caregivers mentioned the stigma of an HCC diagnosis and substance abuse. One spousal caregiver of a patient with HCC unrelated to substance abuse felt compelled to inform friends and family that the patient’s diagnosis was not from alcohol abuse: “But we always had to make sure. We’d say that it wasn’t from drinking. It was because of fatty acids. You know, when you say cirrhosis of the liver, they think, ‘Oh, you drank yourself . . .’”

    Change in lifestyle: A terminal HCC diagnosis brought a change in lifestyle, particularly as patients underwent treatments or required full-time care. One participant said:

    The thing that has been taken away from us in terms of lifestyle is the ability to be free. The ability to go somewhere when you want to go. . . . You can’t just do that anymore because [the patient] has a treatment program. . . . There are other issues. And so that’s kind of sad. I probably am doing less of the things I had liked to do in the past as a result of that. It’s a conscious decision on my part, but I gave things up.

    Some spousal caregivers stopped working to provide full-time care and had a difficult time adjusting to the change. According to one participant:

    Coming off of working all the time and all of a sudden not working, it can also be very stressful because your whole lifestyle changes. I know I’ve had a really hard time adjusting to that because I still feel like I should be out there producing. . . . And it’s been difficult, but, at the same token, I know that I need to be home with him. And it’s been a rough time adjusting.

    Hepatocellular Carcinoma Progression: Symptom Interpretation

    Throughout the illness trajectory, family caregivers relied on visible physical changes as markers of how HCC was progressing but were frequently uncertain about how to identify and interpret symptoms. Four subcategories describe how family caregivers perceived symptoms throughout the trajectory: at the early stage, “I really do not see it”; at a later stage, uncertainty; fluctuating symptoms; and at the end of life, visibly getting worse.

    “I really do not see it”: Family caregivers identified few symptoms at the early stage of the disease. One nonspousal caregiver described the patient’s terminal HCC as invisible because the patient did not act sick or exhibit visible signs of illness: “I know it is liver cancer, it’s very deadly, and it’s hard to get through . . . but the way it affects my [relative], sometimes, I’m like, she doesn’t have cancer. I don’t really see it.”

    Uncertainty: As HCC progressed and patients’ symptoms worsened, family caregivers were uncertain about whether symptoms they could identify were related to the cancer. According to one participant:

    It gets difficult to distinguish between what is diabetic-related and what is liver cancer–related, and, because he’s off his diet, that definitely affects how he feels. If he does one of those binge things, and how exactly that interrelates with what’s happening due to the liver cancer, it is very difficult to ascertain.

    In other cases, as HCC progressed to liver failure, family caregivers were uncertain whether symptoms were related to liver failure or substance abuse. According to one participant:

    I think he may have a couple months, but he might just go fast. There are a lot of things that can go wrong. The ascites for one. He gets that 7 L built up sometimes in a week. . . . I don’t know if he’s getting encephalopathy or it’s just really the morphine. Because he said he takes the morphine, and then he has withdrawals and instantly he’s addicted, and he has the withdrawal symptoms for a few days.

    Fluctuating symptoms: Without an understanding of HCC and its potential progression to liver failure, family caregivers had difficulty identifying what was happening and how to respond to unexpected complications. Hepatic encephalopathy was particularly challenging for caregivers when patients were unable to communicate because of their worsening condition.

    [The patient] was in and out of . . . what do you call it . . . encephalopathy, and doing some very weird things, like wandering out in the hallway to pee. We would just have to get up in the middle of the night and kind of take charge, and we did not know, really, anything about it. They didn’t have any literature.

    Visibly getting worse: As the disease advanced and symptoms became more pronounced, family caregivers interpreted visible changes (e.g., sunken eyes, difficulty walking) as signs of worsening condition and markers of disease stage. As one spousal caregiver explained: “My child [was] doing research. He said one of the end things is the coma. . . . And then when [the hepatic coma] happened, I thought, ‘Well, geez, here we are to that stage now.’”

    Treatment Challenges

    Treatments presented challenges for family caregivers and were described by two subcategories: desire for treatment information and getting through treatment.

    Desire for treatment information: Family caregivers frequently spoke about a lack of information from HCPs regarding treatments and their side effects. One participant said:

    And the first time I brought him for the TACE shot, the second day when I came back to get him, he couldn’t even stand up, that’s how affected he was by that. And I don’t think that they really gave him very much information about how he might feel the next day, because he could just barely get out of his bed into the wheelchair.

    Getting through treatment: When patients’ condition worsened and TACEs were no longer effective, family caregivers contemplated the potential impact of chemotherapy and whether patients would be able to survive. According to one participant:

    I’m hoping that she is physically fit for the chemo [systemic treatment] because the way that I look at her right now, she knows she is not really losing too much weight, but I can see it in her arms, swelling, and her legs are swelling. She is dizzy, doesn’t comprehend very well. I just don’t want the chemo to turn her into a sponge, and that’s just kind of the only thing that’s been on my mind. I hope she gets through it fine.

    Unprepared for End-of-Life Care

    Although most family caregivers were aware that the patient in their care would eventually die, some felt unprepared to provide end-of-life care themselves and continued to lack information about what to expect: “It was that scary to the point where I, I felt so helpless, and I just finally, I just say, ‘Maybe I need to take you into the hospital.’ I didn’t know what was going on.”

    As patients with a history of substance abuse neared end of life, pain management continued to be challenging and difficult for family caregivers to understand:

    I couldn’t understand why, I mean, when [the patient] had his procedures, they would give him fentanyl and this and that. Of course, I don’t want him to hurt. I’m the last person in the world that wants him to hurt. You can’t give somebody that’s an addict a bottle of morphine and say, “Take as needed.” [The patient] doesn’t do it that way. He can’t do it that way, and it’s not his fault because he can’t do it that way.

    One nonspousal caregiver was surprised to learn that she would be responsible for providing such care after a nurse informed her that the patient was “probably going to die” and had a do-not-resuscitate order:

    I went, “You’re not supposed to call 911? What am I supposed to do? What if he just dies right here?” I mean, it seems they should have somebody say, “OK, if he’s with you, then here’s the procedure.” . . . [The nurse] gave me really no support about what to do.


    Findings from this study provide evidence of family caregivers’ perspectives on caring for patients with terminal HCC as the patients approached the end of life. Caregivers faced challenges related to the diagnosis, symptom interpretation, and disease and treatment complications. From the time of the terminal diagnosis until the end of life, caregivers felt unprepared, uncertain, and in need of information to face these challenges. These findings are similar in some ways (e.g., information needs) to findings about caregivers of patients with other cancers (e.g., esophageal cancer, brain tumor) (Andreassen, Randers, Näslund, Stockeld, & Mattiasson, 2005; Schmer, Ward-Smith, Latham, & Salacz, 2008; Schubart, Kinzie, & Farace, 2008; Sklenarova et al., 2015).

    Unlike caregivers of patients with other cancers, family caregivers in this study struggled to differentiate among symptoms related to HCC, liver failure, another diagnosis, or a comorbidity. HCC was the focus earlier in the illness trajectory, but, as the disease progressed, the liver became the focus, particularly hepatic encephalopathy and ascites. Caregivers often lacked information about and were not prepared for patients’ encephalopathy and perceived it as a sign of end of life. The level of cognitive impairment experienced by patients with cirrhosis has been shown to be significantly correlated with caregiver burden (Bajaj et al., 2011). Adequate information and awareness of previous episodes of encephalopathy and treatment compliance have been suggested to prevent episodes or decrease their severity in patients with cirrhosis (Montagnese et al., 2012). However, delaying or stopping progression of cirrhosis and preventing episodes of encephalopathy with proper management (e.g., proper nutrition) may be difficult in patients with tumor growth. Therefore, providing caregivers of patients with HCC information about encephalopathy and its challenges in the context of the illness trajectory is critical. HCPs should discuss and provide clear information on the changing disease trajectory to family caregivers because caregivers’ physical, social, psychological, and spiritual needs are likely to vary based on the trajectory (Murray, Kendall, Boyd, & Sheikh, 2005). Lee and Kang (2014) found that caregivers’ health needs should be considered when providing care to patients with HCC.

    As family members of patients with HCC take on the caregiving role, the type and quality of their previous patient–caregiver relationship may inform their ability to provide care. Patients with or without an HCC diagnosis related to substance abuse may feel stigmatized and socially isolated (Luoma et al., 2007), as may their caregivers. This highlights the importance of HCPs eliciting understanding of, emotions about, and reactions to the diagnosis and disease progression from patients and their caregivers. At the time of diagnosis, a discussion about goals and a plan of care based on the patient’s values and beliefs that includes the caregiver and takes into account their relationship should be initiated to decrease patient and caregiver uncertainty and optimize quality of life. Family caregivers may feel unprepared to comprehend the role and importance of pain management in the context of potential lifelong substance abuse.


    The number of interviews decreased with time and limited ability to achieve data saturation. Although this often was related to the death of patients, the prospectively collected data provide an in-depth description of family caregivers’ perspectives of living with HCC. The sample was primarily Caucasian and included mostly female caregivers.

    Implications for Nursing Practice and Research

    A comprehensive assessment of patients and their family caregivers, and the type and quality of their relationships, is essential for nurses to best support each of them individually and as a dyad to develop an appropriate plan of care. Because findings from this study provide evidence of interrelatedness between HCC and cirrhosis symptoms and caregiver experiences over time, this assessment should be detailed and ongoing. Nurses should focus on caregivers’ perspectives and unique caregiving experiences; provide desired information; and implement interventions based on elicited knowledge, concerns, and challenges.

    The findings revealed that family caregivers frequently experienced uncertainty and felt unprepared to provide appropriate care and understand pain management as the patient neared the end of life. Of note, no patients in this study were referred to palliative care. Nurses should advocate for early referral to palliative care for these patients and their caregivers. The goal of palliative care is to improve quality of life for patients and families at all stages of disease by focusing on assessment and treatment of pain; other distressing symptoms; and other physical, psychosocial, and spiritual problems (World Health Organization, 2017). Early referral to palliative care in advanced cancer has been shown to improve pain and symptom management (Greer, Jackson, Meier, & Temel, 2013), satisfaction with care (Zimmermann et al., 2014), quality of life (Greer et al., 2013), and possibly survival at reduced cost (Temel et al., 2010).

    Nurses need to be aware of perceived stigma and its potential impact on family caregivers of patients with HCC. Research is lacking on perceived stigma among patients with HCC and their caregivers. However, what is known is that informal caregivers of people living with HIV/AIDS experience stigma and that it is associated with depressive symptoms (Mitchell & Knowlton, 2009). Nurses also should educate others about the common misconception that all patients with liver cirrhosis must have a history of substance abuse. In addition, independent of the cause of patients’ liver cirrhosis, because of how late in the disease progression HCC is often diagnosed, nurses play critical roles in advocating for early screening and surveillance. Despite hepatitis C virus and hepatitis B virus infections being common, preventable, and treatable causes of HCC, the mortality rate from liver cancer is increasing faster than any other cancer (ACS, 2015; Dennis, 2016).

    Research is needed to expand evidence-based knowledge to better support family caregivers of patients with HCC. Future researchers should focus on how care provided by family caregivers may vary based on kinship, relationship dynamics, and living arrangement. They should include larger, racially and ethnically diverse sample sizes and more male caregivers, who may experience caregiving differently than female caregivers (Kim, Loscalzo, Wellisch, & Spillers, 2006).


    This study longitudinally describes the challenges family caregivers face related to the diagnosis, symptom interpretation, disease and treatment complications, and end-of-life care for patients with terminal HCC. It contributes new knowledge to begin developing interventions that address caregivers’ desire for information and support. Studies should include patients and HCPs to fully understand the HCC experience and to develop interventions to address challenges that caregivers and patients experience as patients approach the end of life.

    About the Author(s)

    Hansen is a professor and Rosenkranz is a research associate, both in the School of Nursing, and Wherity is an oncology patient care coordinator, all at the Oregon Health and Science University in Portland; and Sasaki is a hepatologist at Veterans Affairs (VA) Portland Health Care System in Oregon. This research was funded by a grant (119477-PEP-10-173-01-PCSM; principal investigator: Hansen) from the American Cancer Society. This research is the result of work supported by resources from the VA Portland Health Care System. The Department of VA did not have a role in the conduct of the study, in the collection, management, analysis, or interpretation of data, or in the preparation of the manuscript. The views expressed in this article are those of the authors and do not necessarily represent the views of the Department of VA or the U.S. government. During the writing of this article, Hansen was supported by funding from the National Institute of Nursing Research and National Institutes of Health. Hansen and Sasaki contributed to the conceptualization and design. Hansen, Rosenkranz, and Wherity completed the data collection and provided the analysis. All authors contributed to the manuscript preparation. Hansen can be reached at, with copy to editor at Submitted August 2016. Accepted for publication January 12, 2017.



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