In this study, the decision-making process involved in treatment refusal amongst cancer patients was explored through the grounded theory methodology. A total of 530 initial codes were extracted, which revealed four categories and twenty subcategories in the process of data analysis.

Figure 1 illustrates how the four categories are related to each other. “Losing resilience against cancer” is the core variable at the center of this model, and the three other categories are related to this concept one by one. The process of abandoning treatment by cancer patients transpires in different ways, and before stopping the treatment, patients experience lack of resilience and endurance.

Fig. 1

Cancer patient refuse of treatment model

The category “Encounter with cancer” explains part of abandoning treatment, which is at the time of being diagnosed with cancer, and explores the contributing factors. Denial, fear, flawed physician patient relationship, shock of encounter can trigger a process that can lead to lack of resilience and endurance that ultimately leads to abandoning the treatment.

The “fighting cancer” category includes the description of the contributing factors leading to the refusal of treatment, in which the patient is utterly fighting the disease. Treatment complication-disease complication, suffering from the disease, shortcoming in sustainable support, can explain the conditions that patient’s experience, which leads to the patient’s lack of endurance and discontinuation of their treatment.

The category “coping with cancer” elucidates the patient’s resilience and endurance under the circumstance that the cancer has progressed. Disease progression, depletion of the patient can lead to lack of endurance by ultimately abandoning the treatment. These categories are summarized in Table 2.

Table 2 Cancer Patient Refuse of Treatment: Category and Sub CategoryEncounter with cancer

All cancer patients remember the time they became aware of their disease. The encounter with cancer affects all individual and social dimensions of a person’s life. Different dimensions of this category included the shock of the encounter, care provided by the treatment team, flaws in patient-physician interactions, denial of the disease, fear of the disease, incorrect and flawed understanding of the disease, familial support, and search for sympathetic care.

The results indicated that experiencing the shock of an encounter with cancer is a common and challenging event. Physicians and nurses often witness this stage of people’s encounter with their disease. In this stage, the sympathetic care and support provided by patients’ close ones and the treatment team are strong determinants.

For the majority of patients and their families, the stage of encounter with the disease is often passed with difficulty. When encountering the disease, a treatment team is often with the patient. Physicians make the patient aware of the situation ahead by expressing the conditions of the disease and treatment recommendations and try to prepare the patient for disease acceptance by gradually presenting the information. This is an unspoken agreement between all members of the treatment team, namely physicians and nurses, that they do not state all the facts related to the disease at the early stages and refer only to a part of the information in order to direct the patient toward the implementation of the treatment protocols. A concerted effort is also made to give hope to the patient and show the promising aspects of the disease in a coordinated manner.

“In reality, we push the patients, we deceive them so that they’ll come. First we tell them to attend three sessions of chemotherapy. Then we say two more; let’s see how it goes. Then we tell them that it is working well and ask them to come for two more sessions. Then, we tell them to come for one more session just to make sure. We do not tell the patients that they should come for eight sessions from the beginning. Even though the treatment protocol is eight sessions from the start, we deceive the patients, so that they can tolerate chemotherapy; otherwise, chemotherapy would be really difficult...” (P1- nurse).

Cancer is a serious, long-lasting disease with numerous complications. Under such circumstances, cooperation between the doctor and the patient is only possible through mutual trust, which is formed through proper interaction between the patient and the oncologist. In cases where this interaction is not well achieved, it will have negative impacts on the patient’s decision.

“Unfortunately, the doctor doesn’t provide proper explanation to patients. If the doctor had told me that this disease was dangerous and I had to undergo surgery, I would not have given up the surgery. If you are literate, the doctor will answer your questions. For me, however, he just told me to go and do this; he did not explain. So, I said to myself that I just had to let it go; I didn’t think how the situation would be...” (P3- patient).

Physician-patient interaction includes the way the news of cancer is delivered, explanations regarding diagnostic and therapeutic interventions, and patient prognosis. To express these matters compassionately and gradually, one must act with sensitivity.

“I went for biopsy. When I took the results to my surgeon, the doctor came to visit me with his assistants. Then, they told me very abruptly and clearly that my leg had to be amputated! At that moment, I felt so horrified. I wasn’t willing to do what he had said under any circumstances...” (P4- patient).

In such a situation, patients experience a level of anxiety that is more than they can endure. This led to the discontinuation of treatment for more than a year among the patients participating in the present study. In fact, the physicians’ inappropriate interactions with the patients created a level of pain and suffering that was beyond their tolerance. Hence, they had abandoned the treatment for more than a year and refused to accept the treatment recommendations due to intolerance.

Denial is one of the most common reactions among the people facing unpleasant situations. The transience of denial puts it at the level of an adaptive reaction. According to the results of the current study, the long-term denial of disease is considered an influential factor in treatment abandonment. This is intensified by limited clinical symptoms, hiding the disease from others, and insisting on the pre-disease lifestyle.

“During my sister’s illness, we had travel plans, family gatherings, parties, shopping... It was good that we did not need to go to the hospital and see other patients. My sister and I were just satisfied that her schedule during the illness was the same as before...” (P5- caregiver).

The participants who had refused to start the conventional treatment due to denial or had abandoned it in the early stages insisted on maintaining a pre-disease lifestyle. Another dimension of disease denial was hiding the disease from others. In this scenario, cancer patients hide the disease from their family members, friends, and even family physicians and try to make everyone think of them as healthy, so that they can have the same routine life as a healthy person. These cases were seen among the current study participants in situations where the clinical signs of cancer were limited or after the first stage of chemotherapy when the symptoms disappeared.

“My illness started with coughs. They said I had lung cancer and I got chemotherapy for eight months. Then, the doctor referred me for surgery, but I did not go. The doctor said I had a tumor and I thought to myself he was just saying that; I was fine. After all, I had been receiving chemotherapy for months. I told my children that the doctor had said I was fine, and I was fine indeed. I was living a normal life; I had completely forgotten about the cancer. I exercised, walked, but after a year, I started coughing again and I felt what the doctor had said might be true...” (P3- patient).

The results of this study showed that some patients faced cancer with presumptions. As a result, the decisions about treatment were made before interacting with an oncologist and under the impact of those presumptions. In such cases, the patient resists diagnostic and therapeutic interventions without knowing the exact type of cancer, the degree of invasiveness, and the stage of the disease and refuses to cooperate. One of the oncologists described his interaction with a patient who did not accept the proposed treatment as follows:

“The patient had Hodgkin disease, but she said she did not want to be treated and that she would fight the disease herself... I talked to them patient and her wife for half an hour. I told him that she could be treated and the disease was curable at that time, but if she wasn’t treated, it would progress and destroy her. No matter how much I explained, she did not accept and refused to allow me to start the treatment for her...” (P2- oncologist).

Physicians try to portray an accurate and logical picture of the disease in patients’ minds, but the picture of cancer is influenced by patients’ life experiences. Therefore, despite physicians’ explanations, some patients may never accept the treatment recommendations.

Fighting cancer

Over time, the disease progresses and starts to reveal its serious nature. The signs and symptoms increase, and the patient actually experiences the pain and suffering of cancer that was the cause of fear in the previous stage. In this situation, the patient may not be able to endure this excruciating pain for various reasons and leave the treatment incomplete. Intolerance in this situation occurs for several reasons. One of the reasons patients abandon treatment is the complications of treatment. At this stage, patients sometimes refuse to accept the conventional treatment because of complementary treatments. Chemotherapy, radiotherapy, and surgery can cause numerous complications. Despite the transient nature of the majority of these complications, if the patient does not have the capacity to tolerate the situation, they will reject the treatment and refuse the treatment recommendations.

“I had a patient who had lymphoma. She had undergone chemotherapy twice and needed to go for a third session. However, she wouldn’t accept, saying how many times a woman can lose her hair!” (P2- oncologist).

“After biopsy, the doctor told me that I had to undergo chemotherapy and that my leg had to be amputated. I didn’t want to do it, I couldn’t. My hair was very long and I couldn’t bear to lose it. I could not imagine life without legs and I couldn’t go on. I wanted to go to college, so I abandoned treatment. I said let the chips fall where they may” (P4- patient).

In the process of cancer treatment, patients are resistant to all types of surgery, especially if they cause an apparent defect. Chemotherapy is also painful due to its many physical complications, toxicity, and hair loss. These therapeutic interventions cause great sufferings for patients and if they do not have sufficient capacity to endure, they may abandon the treatment at this stage.

According to the results of the present study, patients seek complementary medicine due to their concerns about the complications of chemotherapy and surgery and in order to avoid the complications of conventional treatment. In some patients, unsuccessful experiences with conventional treatment in their loved ones is a factor influencing the use of complementary medicine. Combining complementary medicine with spiritual beliefs by some providers of these therapies is another reason why patients pay attention to them.

Based on the results of this study, there are interventions in the treatment process that, without interference with the conventional treatment, reduce the damage and suffering of cancer while increasing tolerance against the suffering of treatment. This is how one of the participating patients described his experience in this area:

“I was scared and hated having a crooked line on my chest. So, I said that I would not have the surgery. My brother who was in Canada told me not to refuse the surgery. He told me that I was young and I could ask them to give me a prosthesis, so that my appearance would not change. He told me that I could even get implants for both of my breasts” (P11- patient).

Interventions of this kind would reduce the suffering of the disease and increase the probability of treatment acceptance and resilience in patients.

A person’s illness affects the entire lifestyle of their family members. The support of a family for a sick member means changing the family priorities, and family members spend their emotional and financial resources to meet the patient’s treatment needs and improve the patient’s quality of life. Given the importance of compassion in the Iranian culture, family members sometimes include a large group of people with even distant familial relationships, all of whom strive to improve the patient’s condition. Nonetheless, prolonged illnesses can deplete people’s emotional reserves and affect the process of disease management.

“In the first stages of treatment and hospitalization, the patient comes with one’s family. The family insists on the treatment process being carried out in the best way possible. As time goes by, however, the family’s reserves gradually run out. It gets to the point where the family wants to do something, but is no longer able to. “ (P1- nurse).

Inadequate emotional reserves of a family can cause the emotional ties to be challenged by the difficulty of a family member’s long-term illness. This crisis affects patients and targets their resilience, thereby affecting the decision to continue or abandon the treatment.

Coping with cancer

Leaving aside the fraction of cancer patients who are cured, other patients, after periods of relapse/recurrence, reach a point where the disease dominates their bodies and they are practically subdued by the disease. The patients who have abandoned conventional treatment during the stages of encountering and fighting cancer and whose disease has hence progressed faster experience regret due to their previous decisions. According to the results of this study, some patients refuse to receive any kind of treatment after being physically depleted due to the progression of the disease. At this stage, doctors recommend chemotherapy or radiotherapy to reduce the symptoms or prescribe medications that improve the patients’ physical conditions. However, due to the reduced physical capacity and dependence on others for their daily needs, patients may have no desire to receive any treatments even to improve their general health.

Many patients have transcendental experiences in this situation. According to current study results, some patients in these physical conditions have transcendental experiences in dreams or even experiences such as seeing their dead relatives in a state between wakefulness and sleep. The effect of such spiritual experiences on patients in these conditions is an easier acceptance of death and even attempts to hasten it by not taking the medications.

Losing resilience

This concept was identified as the core variable in this study, which was associated with the aforementioned three main categories and their subcategories. Traces of this concept could be observed in all the sentences the patients used to describe their suffering and despair in the course of the disease.

“I’ve had a headache for a week and I’ve not been able to see for a few days. I have double vision (cries slowly...). I won’t even go to the doctor anymore, I want to let go, I don’t want chemo anymore... I don’t want to wait and see where it will hit me. What would happen to me? This is harder, it’s very difficult...” (P16- patient).

There comes a time when the patient cannot tolerate the disease anymore. Numerous reasons such as disease symptoms, treatment complications, and fear lead the patient to this point. Each patient describes this condition in a different way. However, all patients who have abandoned treatment have experienced it.

Cancer has a great impact on the patient’s lifestyle from the beginning and the course of the disease is affected by various processes and actions. The treatment refusal process in cancer patients shows how a patient experiences the contexts of encountering cancer, fighting cancer, and coping with cancer during the illness and how the factors in each context cause the patient to lose resilience, which is equivalent to the refusal of physicians’ treatment recommendations.