Table 5 Emergent themes and selected quotations of qualitative responses (n = 32)

What decisions have you made to treat cancer?

Decision-making method

1. Compliance with physician’s instructions

We tend to do what the doctors say… We don’t argue with them… We just follow the doctors’ orders. (#32)

2. Independently making the decision

My words carry weight for my family and friends. When I decided not to undergo traditional therapy, almost everyone thought I was being unreasonable. But because I’m quite bossy, I often have the final say. (#3)

3. Family engagement in treatment decision-making

My mom told me to take herbals, something like South African leaf, which is super bitter. She insisted that I eat the raw leaf. The taste was terrible. She said it was to prevent disease progressed…I thought, “Why do I need to eat something to prevent it?” I didn’t want to eat it, but she forced me. (#1).

The main reason was that my daughter insisted [that I receive percutaneous endoscopic gastrostomy (PEG)] because her colleague had the same problem as me. Her colleague hadn’t undergone PEG. The cancer was cured and he was discharged from the hospital, but he was sent to the emergency department the next day and was found to have a stomach ulcer. He had to get nutrient injections because he couldn’t eat anything. His stomach was empty, the stomach muscles kept contracting, and the stomach ulcer occurred. So, she [daughter] insisted that I undergo PEG. (#6)

What was the most difficult decision you made?

Decision-making predicaments

1. Insufficient knowledge of the disease

The doctor didn’t tell me about my illness in detail to help me understand, but I didn’t know how to ask. And then…I didn’t know how to prepare, how long would I live, what things should I leave to my family, what documents I had to prepare…The doctor didn’t tell me anything. (#28)

2. Concerns regarding cancer treatment costs

It [cancer treatment] would only place more burden on my family and children. I would rather die than suffer [from the illness]. Isn’t it better for everyone? (#6)

If your illness is so serious that it cannot be cured, medication can only make you die more slowly. Like… if you can live for 6 more months, let’s say, you need a one-on-one caregiver that costs [NT]$60,000 a month. Then, 6 × 6 = 36, you need $360,000 in total. And you need to eat, which may cost you an extra $200,000 or $500,000. Do you have enough money to cover all the expenses? (#5)

3. Impact on body image

The doctor only gave me two choices. First, remove it [the bladder] and then get chemotherapy. I thought, “Is my condition that bad?” The doctor said that lots of people who wear a urine bag have lived for a long time. But this would be very inconvenient to me. Wearing a urine bag when going abroad and then coming back is quite inconvenient. It would change my entire work pattern. (#11)

If possible, I don’t want to have chemotherapy. Having chemotherapy has weakened my immune system. I can’t hang out with friends, I keep losing my hair, and I have no energy at all. Leading such a life is meaningless. I’m not normal, and I can’t accept it. (#28)

If you can prepare for a critical treatment decision in advance, what would you do?

Willingness to engage in ACP in the future

1. Willingness to make an advance directive for hospice and palliative care

Actually, I wanted to have that marked on my NHI card. Yeah, the hospice care [making a note of hospice care order on the NHI card]. (#23)

2. Patients’ awareness of the Patient Right to Autonomy Act

In the first or second year when I got cancer, I started to pay attention to such news [drafting Patient Right to Autonomy Act]. When the bill was passed, I kept searching for available hospitals and visited them [to sign an advance directive], no matter which hospital, because this [ACP] is what I want. (#11)

3. Growing acceptance of euthanasia after long-term persistence of disease

I guess everyone has the right to bodily integrity and autonomy. I think euthanasia can actually be a good solution because at least I can die with integrity. It’s just saying goodbye to this world, not the end of life. From a religious perspective, it [death] represents the beginning of a new life journey. (#19)

4. Indecision because of non-urgency and misunderstanding of decision-making timeline

I don’t know if I can be that determined when I face it. To humans, fear and anxiety is inevitable when death is near. People and their families naturally panic when they sign the not-to-resuscitate order. In fact, I guess signing it would be a good choice…at least I can die in peace. If I talk about it [making an ACP decision] with my family now, they might think that there must be something wrong with me. (#27)

What is the most challenging part when making such a treatment decision?

Predicaments related to advanced directive decisions in the future

1. Family conflict

I remember clearly that once the doctor asked me, “No intubation? Then how about an NG (nasogastric) tube for feeding?” “Feeding is necessary, I can’t let my dad die from hunger,” I continued, “but we don’t want things like ventilator or first aid.” However, my younger brother and his wife came and stopped the doctor from practicing the DNR order to my dad for no reason. The doctor was furious, grumbling about why our family hadn’t reached an agreement beforehand. They [younger brother and his wife] strongly opposed our ACP decision. Later I learned that although our family had signed the DNR order, it might have made things difficult for the doctors if any of the family members were to oppose the decision. (#3)

2. Effectiveness of time-limited trials

If the cancer I have is…irreversible, I wouldn’t want intubation. If any accident were to happen and the doctor said that intubation could save my life, then intubation would be fine. However, if the doctor expected that I would be in a permanent vegetative state even after being saved, I wouldn’t want to be rescued. Being bedridden for a long time can only burden my family, which I don’t want. (#32)

3. Concerns of physician acting contrary to patients’ wishes

My grandma died painfully after being hospitalized for a long time. Every time when her heart weakened, the doctor would ask, “Do you want me to give her cardiotonic drugs?” We said “yes” after some discussion, but other indices dropped after she took the drug. Then the doctor would ask whether we want to continue this treatment because it seemed that none of the treatments worked. This process repeated several times. The doctors might not be consistent in the treatments they administer. (#24)

4. Fear of making a decision because of the high ACP consulting cost

When my wife told me about it [the Patient Right to Autonomy Act], I agreed with the ideas in the act. If you’re dying, you have to let go. Don’t let the disease destroy the entire family. My wife is no longer young, she doesn’t have enough energy to take care of me. That can cost [NT] $3,000 [ACP consulting costs $3,000 per session as specified in the Patient Right to Autonomy Act], which I don’t want to pay for. The government should cover such expenses…it makes no sense to make citizens pay for it. (#22)