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Table 2 Dialogues in each process

From: Psychological process from hospitalization to death among uninformed terminal liver cancer patients in Japan

Stage 1

Process 1. Restriction in daily life

"It's disturbing that I'm not allowed to smoke..." (55)

"I'll become even more sick if I have to live without alcohol!" (56)

"It isn't surprising that I can't fall asleep easily because I am forced to sleep earlier than usual every day, don't you think?" (59)

"Oh, God! I can't stand this life! You can't understand it!" (63)

Process 2. Financial burden

   "I was hospitalized just for a medical checkup, so I'll be out of here soon. Even so, it will cost me a lot with all the medical equipment they're using to check me over... Why was I put into the hospital? I don't feel sick anywhere in my body... I know my body best. Doctors try to rob patients of money by hospitalizing us regardless of the real condition of our health!" (57)

Process 3. Restriction in physical conditions (Sensing deteriorated health)

"I can't eat a full meal." (63)

"I want to lie down on the bed." (54)

"I have a fever." (56)

"I become fatigued and feel like shouting." (58)

Process 4. Problems in health communication

"Something is wrong. I can't quite understand what my doctor says. He told me something difficult to understand. His explanation for my symptom is not clear to me." (61)

"His explanation was not clear!" (61)

Process 5. Anxiety about being abandoned

   "These days, my family doesn't visit me as often as before. Although they come to see me, they don't talk much. I feel uneasy. I feel they are avoiding me. I wish they were here when I'm in pain... You are the only one who listens to me all the time." (59)

Process 6. Anxiety about being a sick

"I've just launched an important project. I have to take responsibility if it doesn't work out properly. For now, I can communicate with those involved via e-mail, but once they know I am sick, it will cause a big commotion. After a while, I want to go back to my company to let them know I am OK." (57)

"I told my children I am in the hospital for a medical checkup. My eldest child is preparing for an entrance exam. I can't afford to be sick anyway. I have to go home as soon as possible." (54)

Process 7. Anxiety about being hospitalized

   "Every day, my wife comes to the hospital to take care of me. I have a daughter living at home, but she is not available because she has to go to school. So, I am worried about my wife's health, since she has to take care of both the household chores and me." (61)

Process 8. Anger (Not being advised of the condition of their health

   "Something is wrong with my body. Even so, my family doesn't tell me anything about it. Am I seriously ill? Doctors and nurses don't give satisfactory answers to my questions, either." (55)

Period of the stage counted from hospitalization: 0.2–1.7 months

Stage 2

Process 9. Death perspectives thinking about the unknown (Talking about death)

"Patients tend to think about what death would be like." (59)

"Death is not predictable." (63)

"We know the death is next to us all the time." (58)

Process 10. Shame

   "If I am found to suffer from such a disease, it would affect my daughter's marriage, and it would be shameful for my family to be thought of as physically weak." (52)

Process 11. Death Perspectives – Frustration/Separation

"If I die now, my family will have a difficult life." (58)

"It's unbearable if I can't do well enough for my family." (59)

"If I died now, I wonder what my life would have been. The plan for my life would crumble. My dreams and hopes would be dashed!" (60)

Process 12. Refusal (Rejection of family and medical staff)

   "My family and doctors alike seem to be hiding something from me. My physical condition isn't good, despite what the results of the medical checkup indicate. Ms. Maeda, do you know something about me? Did you hear something? I wonder if I have to go through surgery? If so, I want it earlier than later. I'm not going to ask my family and doctors because they only repeat the same answers... Ms. Maeda, if you have some information about me, please let me know in private. I won't question anyone else about it anymore, just you." (61)

Period of the stage counted from hospitalization: 1.0–6.0 months

Stage 3

Process 13. Loneliness-Anticipating death

"Death does not matter to me." (62)

How meaningful is it for me to live longer in such ill health?" (54)

"To die is very sad." (56)

"When you die, you are alone. Death is the last unfortunate event in life." (56)

"We are alone, alone, alone........when the death is coming to us." (57)

Process 14. Anxiety about medical test and treatments

   "They just say 'it's a checkup, it's a checkup' and get me to go through more check-ups, which are painful in many ways. I have never experienced checkups like this before and they are really unbearable. If this situation continues, I feel like my body will break down with all these check-ups and treatment!" (62)

Process 15. Fear of death

"I feel uneasy when I think of my death." (60)

"I am suffering from cancer. I am scared and worried about dying in agony." (61)

Process 16. Emptiness

"If I die, will I be forgotten?" (57)

"My death would be meaningless for society as a whole." (63)

"Even if I died, the world would not change at all..." (55)

Process 17. Perceived approaching death

"You remember, Mr. XX, who was hospitalized in the same room? That guy passed away last night. When I told my wife, I said, 'His family had difficulties when he was alive. From now on, his wife will lead an easier life.' My wife had a slightly angry expression on her face when she replied, 'How can you tell she would lead an easier life?'." (63)

"Humans have a really ephemeral existence. Before, I felt I would die whenever somebody around me passed away. However, now I feel it really close to me. Having said that, in reality, it isn't possible to feel our own death until the last minute, as long as we are in this life..." (61)

Period of the stage counted from hospitalization: 4.0–9.7 months

Stage 4

Process 18. Resigned to death

"Knowing how to die reflects a person's attitude/thinking towards life." (55)

"Only when I die will the value of my life be clear." (58)

"Death is the important and decisive moment for people." (62)

"I think people become perfect or complete at the moment they pass away." (60)

Process 19. Thinking about the next life

"After I die, I will return to this world by reincarnation." (62)

"When people die, they will be reborn in another world. I just wonder whether I could have a good life then." (63)

"I wonder if I could go to a place where I would be more satisfied when I die." (54)

Process 20. Grief

   "........."

Period of the stage counted from hospitalization: 7.5–15.1 months

Stage 5

Process 21. Reconfirmation of their own lives

"My family depends on me." (66)

"My friends depend on me." (54)

"I feel happy now." (58)

"I feel that I have been helping others so far." (59)

"I have tackled everything very aggressively up until now." (60)

"I have to be a reliable person. After my hospitalization, my families are united." (54)

Process 22. Good memories

"There were some events in my life that are too painful to remember." (55)

"When I look back on my life, I feel very satisfied." (65)

"When I remember the past, I'm encouraged and feel peaceful." (57)

"When I look back on my life, my heart is full." (61)

Process 23. Appreciation

"I am really grateful to my wife for everything. I am worried that my wife may fall ill because of me..." (57)

"I appreciate everybody for not telling me that I have cancer up until the last minute..." (62)

"Ms. Maeda, thank you for having heard my complaints. Without you, my hospitalization might have been much different. You might have had a very difficult time. Did you get learn something by interviewing me?" (59)

Process 24. Wishes

"If I could be out of the hospital, let's do this and that, shall we?" (56)

"I would like to see the first sunrise for the year on New Year's Day next year on the top of Mt. Fuji." (59)

"Let's go on a family trip!" (61)

Period of the stage counted from hospitalization: 12.6–21.1 months

  1. Numbers in the parenthesis are the ages of the person.