Information gathering.

Patients with cancer tend to consult their families about whether to visit a university hospital before meeting a doctor, especially after receiving health check-up results or developing symptoms. Adult children often take the initiative in searching for information and scheduling appointments. Additionally, when patients exhibit suspicious symptoms, family members arrange the necessary examinations to demonstrate their involvement in the early stages of cancer detection.

Given the nature of university hospitals in which medical specialties are finely divided, patients must choose an appropriate department for their appointment in advance. Patients lacking medical knowledge or those who find it difficult to search for information often face challenges. Families intervene by collecting information at various levels before medical consultations. This information gathering by families includes self-diagnosis related to the types of cancer correlated with symptoms and the relevant medical departments to visit as well as integrated considerations that encompass post-diagnosis treatment processes, such as who the renowned professors are and what treatment options are available.

I also started looking things up ahead of time, using what I already knew, and searching for a lot of information online. I wanted to figure out how far we should go with the surgery and what the best options are to make sure the cancer doesn’t come back. Since I’m the caregiver, I know that caregivers usually look into things more, so I did my research, and then we asked the professor about any questions we had.

-029, Family (daughter)

I feel like the general public just doesn’t have enough medical knowledge. That really hit me when we were going through my dad’s diagnosis and treatment plan—I was honestly surprised. Like, I remember thinking, ‘Wow, my dad really didn’t know much about this?’ Maybe it’s because I’ve been around hospitals a lot and had more exposure, but still, I was shocked at how little he knew. And he’s actually pretty young! It made me realize just how little insight some people have about medical stuff.

-008, Family (daughter)

In the case of Participant 008, her father was unable to accurately understand the physicians’ statements during their consultation, resulting in failure to recognize his diagnosis of pancreatic cancer. Participant 008 was required to explain the details of the consultations. As a daughter and employee of a university hospital, Participant 008 was involved in every aspect of medical communication, including obtaining information, selecting the hospital, accompanying her father to appointments, interpreting the consultation content, and scheduling subsequent treatments. Without her involvement, her father would have struggled to understand his health condition. Participant 008 illustrates how families participated as communication mediators across all aspects of treatment.

Families not only provided information but also tended to accompany patients to medical appointments. When patients are first confronted with a diagnosis of a serious illness such as cancer, they may struggle emotionally and feel overwhelmed. In such instances, family members assist in scheduling appointments and accompanying the patient, offering emotional support while also helping them understand any details that they may not fully grasp due to mental shock.

I went with my husband every single time, from start to finish, and the reason is that I wasn’t really in the right state of mind. I couldn’t really take in what was being said in the consultation room. So, I asked my husband to pay close attention to what the professor was saying and even to record important conversations on days when we were getting results. I never went alone; he was always there with me.

-025, Patient

When there’s a caregiver, they usually come in together. Most of the time, the caregivers are always there with the patients. It feels like about two-thirds of the time, people come in with their spouses or children.

-037, Doctor

Communication mediator.

When patients struggle to comprehend medical information and effectively engage in discussions with healthcare providers and family members acting as caregivers, family members perceive themselves as crucial intermediaries in physician–patient communication.

Family members frequently bridge this communication gap by simplifying and explaining medical information to patients after consultation. Additionally, they may engage in discussions with physicians on behalf of patients during medical appointments to ensure that the necessary information is communicated and understood. Healthcare practitioners recognize that communication during medical appointments is often centered on family members, which is reflected in their interactions during consultations. This is especially true for elderly patients, as medical practitioners tend to prioritize communication with caregivers rather than with patients themselves.

Patients also reach out directly, but from what I’ve seen, usually around their mid-60s to 70s, I tend to contact the caregivers first. Then, the caregivers pass the information along to the patients. I always ask, ‘Who should I contact first?’ and most of the time, patients prefer that I reach out to their kids first.

-012, Nurse

Caregivers often help out and summarize things, especially for elderly patients. This is because many older individuals might not manage self-care very well. When the caregiver is there to summarize how the patient has been doing, it makes things a lot easier for us. For elderly patients, having a caregiver around is much more comfortable and helpful.

-037, Doctor

When miscommunication arises between patients and physicians, family members serve as intermediaries, helping to clarify misunderstandings and reinforce a shared understanding of the treatment plan. The case of Participant 015 demonstrates this:

My father-in-law suddenly asked me, ‘Do you think the doctor is lying to me?’ And I was like, ‘What possible reason would that young professor at a university hospital have to lie to an elderly patient like you? What would they even gain from that?’ I had no idea what exactly he thought he was being lied to about. I didn’t know what to say or how to explain things to him… (omitted)…Then, later, the doctor actually called me. They said my father-in-law wasn’t understanding the situation and asked me to help convince him. It was so exhausting, being stuck in the middle.

-015, Family (daughter-in-law)

So, my mom often didn’t know who to ask about things at first. She would just ask me. I would tell her, ‘I can handle the scheduling later.’ I would step in a bit and say things like, ‘You can ask about this later’ to help her out.

-027, Family (daughter)

The mother of Participant 027 lacked a clear understanding of how to communicate with physicians. As a result, Participant 027 assumed the role of a discerner, identifying which important questions needed to be asked within the limited time, and guiding the patient on which questions were appropriate to raise with the doctors.

For someone going through surgery for the first time, it’s impossible to understand everything perfectly right away. That’s just how it is. I believe it’s also important for caregivers to step in and help patients understand things better. Especially for elderly patients—it just makes sense that they’d need that extra support.

-020, Family (partner)

Participant 020 emphasized the essential role of family members in facilitating the patients’ understanding during medical communication.

Intervention in decision-making.

While some patients made treatment decisions independently, our findings indicate that in most cases, decisions were made in consultation with family members or, in some instances, by family members on behalf of the patient. The family’s role became particularly prominent when patients lacked motivation to pursue treatment, as family members often played an important role in persuading them to proceed with medical care.

I think I received a lot of help from my family and those around me who have had similar experiences. The doctor simply explains the options that I can choose. All I could do was ask about the advantages and disadvantages of robotic procedures compared to regular procedures. However, those who have experienced it tend to know more details.

-006, Patient

This influence was particularly evident when a family member had a medical background as patients tended to defer their judgment and decisions. Participant 006’s family member (daughter) worked at a hospital, so participant 006 sought her opinion before making decisions. As caregivers are deeply involved in the patients’ daily lives, their repeated encouragement and persuasion are more effective in promoting adherence to treatment than a physician’s recommendation alone.

I think it’s something that needs to be discussed together. In my case, I tend to rely a lot on my family. For instance, when it came to treatment options and transplants — like the three choices of allogeneic, unrelated donor, and cord blood transplant — I discussed them a lot with my family. Ultimately, we could only go with cord blood, but we had many discussions.

-046, Patient

My grandma was pretty negative about the whole treatment from the start. She kept saying, ‘I’m going to die anyway, so why waste money on this?’ She also didn’t really like taking her medication, so my aunt had to constantly check on her and remind her to take it. She also gave her a lot of emotional support, which I think was really important. I ended up convincing my grandma, and since I work at a hospital, she kind of saw my words as the final answer. She was like, ‘Okay, I’ll do whatever you say.’ So, I think that helped her make a decision in the end.

-024, Family (granddaughter)

When patients did not wish to pursue treatment or rejected a physician’s recommendations, their families played an important role in persuading them to undergo treatment. Participant 006 stated that she consulted her family members when deciding on the surgical method and occasionally sought information from relatives who had experienced cancer. She noted that, nowadays, quite a few people around us have had cancer, but this often remains unknown until they disclose it themselves. When she sought opinions about her condition, she discovered that some relatives had undergone similar experiences. She obtained information from them to aid her medical decision-making. As seen in the case of Participant 024, older patients often felt burdened by the continuation of challenging cancer treatments. However, all family members of the study participants reported that they successfully persuaded them to continue treatment. Through these direct and indirect interventions, family members facilitated patients’ acceptance of treatment, ensuring that financial concerns did not become a barrier to receiving the necessary medical care.

Financial support.

In cases where patients were reluctant to undergo treatment owing to financial concerns, family members might play an important role in influencing their decision-making. Some family members directly covered the medical expenses, whereas others reassured patients that the cost would not be an issue, thereby alleviating their financial concerns. The study found cases in which their children discussed and shared costs that were not covered by insurance (Participants 024 and 025). In such cases, the children would often gather or create group chats to discuss financial issues. Importantly, the costs incurred by families ranged from surgery to immediate treatment. Participant 015 stated, “We [family members] not only covered the surgery fees but also bought functional foods whenever the father-in-law [the patient] wanted them.” Families also took on expenses related to post-treatment care, such as nursing home fees for rehabilitation, professional caregiver costs, and even health supplements deemed beneficial for cancer patients, thus encompassing the financial responsibility for the entire life of the cancer patient beyond just the realm of treatment.

The costs you mentioned were really important. We discussed whether they were covered by insurance, and if not, who would bear the expenses. After the surgery and discharge, we also talked about who would go to the hospital for care and how to cover those costs. I heard that these discussions happened among the adults involved.

-024, Family (granddaughter)

One of the saddest aspects of providing care is that there are cases where patients end up giving up. This can happen for various reasons, including financial constraints or a lack of someone to provide care. Sometimes, caregivers also don’t make treatment decisions at all, which can be really disheartening.

-044, Doctor

Participant 044 highlighted the absence of a family member or a situation in which the caregiver could not pay the costs as a significant reason for cancer patients to forgo medical care. When families shoulder the financial and caregiving burdens of treatment, a lack of cooperation from family members might result in patients discontinuing treatment regardless of their personal wishes.

Integrated care.

In addition to directly participating in medical communications, family members provide emotional support to patients. When patients feel exhausted or consider abandoning the arduous treatment process, emotional encouragement from their families helps sustain their motivation to continue the treatment. Thus, caregivers indirectly influenced decision-making by fostering patient resilience.

After the treatment, since people were going to find out anyway, my acquaintances and family also came to know about it, and sharing those experiences provided great comfort. It made me realize that I’m not living in a world alone.

-003, Patient

At first, we went together—especially when they were getting admitted to the hospital and all that. In the beginning, he was really scared about the immunotherapy, like really scared, so I went with him. But then, after actually going through it, we realized it was over in a flash. It felt kind of anticlimactic. So, I told him, ‘Next time, you can come by yourself.’ In a way, that’s also a form of support—helping them feel comfortable enough to go on their own.

-035, Family (partner)

Patients with cancer often experience significant psychological distress upon diagnosis because cancer is commonly perceived as a life-threatening disease [23,24]. As demonstrated in Participant 035’s partner’s response, patients may develop a heightened sense of fear throughout the treatment process owing to the side effects of anticancer therapy, making them reluctant to visit the hospital alone. In such cases, caregivers accompany patients, provide emotional reassurance, and reinforce their commitment to the ongoing treatment. This highlights the indispensable role of family members in supporting patients not only in medical decision-making, but also in their overall psychological well-being throughout the cancer journey.

If the illness I have isn’t something that can be completely cured, then the real question is—can I still live a normal daily life while managing it? Of course, the ultimate goal should be a cure, but if this is something I have to live with for the rest of my life, then the focus shouldn’t just be on the cure itself. It should also be about how I can coexist with this illness and still maintain my everyday life. That’s what really matters.

-014, Patient

One of the most frequently mentioned areas in which patients perceived a critical need for communication with their physicians was detailed sharing and consultation regarding the overall treatment process beyond immediate medical interventions. Although patients underwent regular medical consultations, these interactions often focused primarily on necessary tests and diagnostic results. Consequently, there was a notable lack of guidance on the overall treatment trajectory and the specific roles and responsibilities of patients within that process, along with practical considerations for maintaining the patient’s daily life. Participant 014’s argument that cancer treatment is not just about a cure but about how to coexist with cancer in her daily life demonstrates a different perspective on the cancer treatment.

From the doctor’s perspective, he thinks the improvement is all because of the chemotherapy. But from the family’s point of view, sure, the chemo helps, but we also believe it’s because of all the other things we’re doing—like additional treatments, making lifestyle changes, exercising, and putting in the effort every day.

-009, Family (son)

Participant 009 noted that doctors tended to assess patient improvement based solely on the efficacy of anticancer therapy, whereas patients and their families perceived progress as a result of a combination of factors, including dietary habits, physical activity, and complementary therapies.

I think I unconsciously started to try to understand my husband as much as possible. I didn’t really nag him much. When he was discharged from the hospital, I thought right away that I needed to make sure he ate properly. I decided to switch his diet to natural foods, like really natural. So, I started making tomato soup. You know, like with about 7 or 8 different kinds of veggies in it.

-035, Family (partner)

In this process, integrated care provided by families might be important. Participant 035 demonstrated that families take responsibility for holistic care in areas of daily life that healthcare providers cannot address. They intervene when there is a mismatch between the treatment that the physicians aim to provide and the daily care that patients require. Dietary management is crucial for cancer patients, and families perform everyday management tasks that complement medical treatment. For instance, Participant 035 reported that following her husband’s cancer diagnosis, she completely revised his diet and deliberately reduced her habitual reminders to minimize his stress.

I don’t think shared decision-making is just something we talk about when someone is first diagnosed or just during initial treatments. We have to keep making ongoing decisions each time there’s follow-up. The family’s involvement in the treatment is just as significant as the patient’s, even though the patient’s opinion is the most important. I believe the family should be fully informed too. It’s all about moving forward together as a family.

-039, Doctor

Healthcare professionals also recognize the significance of families as central figures in integrated care. The medical practitioners who participated in this study acknowledged that while there are both positive and negative impacts on families involved in treatment, they recognize the importance of their role.

Adult children as decision-makers.

In the South Korean healthcare context, there are many instances in which family members of patients with cancer are deeply involved in communication, particularly when children are in the caregiver position [25]. Among the study participants, most older patients were accompanied by their children to medical appointments, and the children participated in medical communication. There were also cases in which the children communicated directly with physicians. Interestingly, even when patients with cancer did not disclose their diagnoses to their parents, they indicated that they would intervene more if their parents were diagnosed with cancer. This highlights that despite various family dynamics, communication within the family unit, especially in parent–child relationships, is prevalent in medical contexts.

Cancer patients tend to be older, you know, many are grandparents. A lot of times, their children just can’t accept them not getting treatment. I think there’s still a lot of that Confucian influence around. From what I see, not getting treatment is seen as being unfilial.

-011, Nurse

You know, given their age, elderly parents might not be familiar with the process or able to make rational, logical decisions as easily. So, I think we, as younger folks, would discuss and share the situation with my brother and the rest of the family to make decisions. We’d definitely discuss with our parents, like saying, ‘The situation is this and that, so it might be better to choose this option. What do you think?’ But we’d likely focus on providing them with information that helps them make a more rational decision.

-003, Patient

Within families, the relationships between parents and their children may differ from those between parents and their spouses. One reason why children become deeply involved in their parents’ medical issues, as noted by Participant 011, may be traditional cultural values, in which a child’s involvement in their parents’ treatment is seen as a moral expression of filial piety. However, for older patients, declining physical abilities often make communication with physicians physically challenging and necessitates the involvement of their children. Participant 003, a patient with cancer in their 50s, did not initially inform his parents of his cancer diagnosis. However, he mentioned that if his parents had been diagnosed with cancer he would actively involve himself. This illustrates that in Korean family dynamics, the direction and extent of involvement may vary depending on whether the position within the parent–child relationship is that of the parent or the child.

Discrepancies of opinion between family and patients.

Because family members often hold differing opinions, disagreements within the family can hinder effective communication with physicians. Participant 039 noted that when family members fail to reach a consensus or when a relative who has not previously served as the primary caregiver suddenly becomes involved in the parent’s treatment, such situations can disrupt the long-term treatment plan.

Sometimes, people need someone to blame for the situation, and the family can have all sorts of different opinions. Even when the main caregiver is doing a great job, another sibling might come along later and start complaining or blaming them. There are cases where, at the very last stage, someone decides to show up and suggests transferring to a higher-ranked hospital. Like, a son who’s never visited in three years might suddenly call and say he’s booked a spot at XX Hospital.

-039, Doctor

Communicating within the family can be really tough. Everyone has their own opinions and circumstances. Like, some might want to be involved in medical appointments but can’t actually be there. Yet they still have expectations. And then, when the family talks about their opinions, it’s like they just don’t get what I’m going through, and I ended up crying because of it. After that, they said they were sorry.

-015, Family (daughter)

In cases where families persuade patients to proceed with treatment, family members often experience regret and responsibility, leading them to advocate for treatment, even when the patient does not consent. In particular, when the patient is an elderly parent, they may continue treatment at the insistence of their children even if they do not wish to. In such instances, parents tended to follow their children’s opinions. The context of treatment persuasion varies depending on who advocates it (e.g., family members who provide caregiving or those working in the medical field tend to be more persuasive) and the narratives used in the persuasion process. This points to the peculiarities of parent–child relationships in South Korean society.

My grandma was saying she couldn’t stand the side effects of [cancer treatment] anymore. It was a treatment we recommended but seeing her do that made me wonder if it was the right decision. Watching her struggle with the side effects felt really uncomfortable at the time.

-021, Family (granddaughter)

Participant 021 described a case in which the family persuaded a reluctant elderly patient to undergo treatment. However, during chemotherapy, the patient experienced severe itching and skin peeling, necessitating the use of a strong ointment. Observing this, Participant 021 felt a sense of moral burden in proceeding with treatment that the patient did not desire.

Just being in the hospital for a long time doesn’t necessarily mean they’re going to get better. From what I’ve seen, the fatigue among family members just keeps increasing. But the caregivers often find it hard to let go. Even when the chances are super low, they continue with treatments for the patient. Seeing all that makes me think that knowing when to appropriately stop treatment is really important.

-016, Nurse

Participant 016, as a nurse, criticized the reality in healthcare settings, where the wishes of terminally ill patients are often overridden by their families, resulting in prolongation of life against the patient’s will. They emphasized that when a patient is suffering and the likelihood of successful treatment is minimal, the preferences of the patient should take precedence over those of the caregiver.

Information concealment by the family.

In the interviews, some family members excluded the patients from communicating. Information was controlled by not sharing details or by asking the physician not to directly mention the treatment results to the patient during appointments. Typically, families withhold information because of concerns about emotional shock to the patient due to the severity of their condition, especially in cases involving terminal or serious illnesses.

Some people don’t even know that it’s a terminal situation from the start. Like, once a caregiver brought their mother in a wheelchair, and I was trying to ask about her condition. So, I asked, ‘What did the gastroenterology doctor say about your condition?’ and the patient didn’t really know. Then I asked, ‘You do know it’s pancreatic cancer, right?’ Just as I was about to mention that it’s terminal, the caregiver crossed their arms in an ‘X’ gesture, which meant the consultation ended up taking even longer.

-033, Doctor

Since I was there, I figured I might as well get checked. Suddenly, they came out and said that although not all the blood results were in yet, the white blood cells, red blood cells, and platelets were already not normal. I went to XX Hospital for a bone marrow test, but even though the family all knew, they didn’t tell me. The doctor didn’t tell me either. They just kept saying to wait, so I thought the results weren’t ready yet. When I found out that they had already told my family but not me, I was really angry at the time.

-046, Patient

Participant 046 expressed dissatisfaction upon discovering that despite being the patient, she was the last to learn about her diagnosis, while the entire family already knew. The discomfort experienced by Participant 046 stemmed from the lack of respect for her right to understand her own body. Cases in which families intentionally withhold medical results illustrate that communication inequity is not always mitigated by family involvement; it can be exacerbated, potentially hindering the patients’ ability to communicate effectively with their physician.

Excluding the patient’s opinion.

Instances in which families withheld certain information necessary for effective medical communication and made unilateral decisions without considering the patient’s opinion were identified. This contrasts with cases in which families persuaded the patient, which involved family intervention, but resulted in the patient’s agreeing to treatment, with ample interaction and communication between the family and patient in the process. However, in the identified cases, families either made decisions entirely on behalf of the patient who disagreed with or blocked all the information necessary for the patient to understand the issue, thereby excluding their participation.

It seems like when families struggle to find that balance, patients often end up feeling excluded. This happens a lot with elderly patients, and I’ve seen it with some families. For example, sometimes the son completely takes over the decision-making, leaving the patient out of it entirely. (Interviewer: Even if the patient has decision-making capacity?) Yeah, there are cases like that.

-032, Doctor

People in their 60s and 70s sometimes make their own decisions about surgery, but there are also cases where they come in influenced by their caregivers. So, when they arrive, even if the patient (the mother) wants to say something, the son tells her, ‘Mom, just be quiet.’ And then the son ends up saying to me, ‘Doctor, please schedule the surgery for me.’ I’m sure she had something she wanted to say.

-044, Doctor

Participant 032 described a situation in which a son with an elderly father did not consider his father’s opinion when making decisions regarding his cancer treatment. Similarly, Participant 044 highlighted a scenario in which a son accompanied his mother, a cancer patient, to a medical appointment and blocked her from attempting to communicate with the doctor about her treatment.

Considering the complex dynamics of Korean kinship relations, the authority of an adult middle-aged son within a family structure can significantly influence how decisions are entirely made by the family. The extent of a family’s influence on communication varies depending on the respective positions of the patient and family members within the family, as well as how these relationships have been shaped over time.

I think family involvement is too strong in our country. Patients suffer because they want to make their own choices, but they feel guilty and worried about what their family thinks. They often wish they could avoid treatment altogether. Regardless, if they have decided to pursue treatment, they should be discussing it with professionals and communicating their thoughts, but family often get in the way of that. I believe the weight of the patient’s choice should increase. There are even cases where some people tell their young patients not to speak up. Parents will say, ‘Don’t say anything,’ and send the patient out. There are those who want to talk to me without the patient present.

-011, Nurse

Participant 011 criticized the excessive involvement of families in medical communication in Korean society. Despite the formal recognition of the patient as the principal decision-maker in medical settings, patients’ choices are often overshadowed by familial influences. Instances in which families attempt to exclude patients from consultations and communicate directly with doctors underscore how excessive family involvement can undermine patient autonomy and serve as a direct barrier to effective communication.