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Table 2 Patient participants’ interview quotes

From: Living and dying with incurable cancer: a qualitative study on older patients’ life values and healthcare professionals’ responsivity

Main theme 1: Handling incurable cancer

Sub-themes

Related life values

Representative quotes

1.1 Anticipatory outlook on “a reduced life”

Being free of pain or pain being livable (autonomy)

Q1: “I think pain is terrible. You’re powerless when it comes to pain. […] It is awful to have such pain, and being unable to do something about it.” - i6 (male, 83 years old, widower, four children)

Having energy; maintaining mobility; preserving control over bodily functions (autonomy, dignity)

Q2a: “… if you have to lie in bed constantly. That you won’t come out of it anymore. I consider that to be undignified.” - i9 (male, 74 years old, widower, no children)

Q2b: “My world is shrinking as I am lying in my chair. Just watching, doing nothing.” - i8 (male, 83 years old, married, three children)

Preserving mental and cognitive capacities (autonomy)

Q3: “Well look, I am so happy that my mind is still in order. If that would decline, I would be sitting there like some sort of zombie. I would find that awful.” - i10 (female, 91 years old, widow, no children)

Proportionality; balance between treatment and quality of life (beneficence and non-maleficence)

Q4: “Well, after I quitted with chemo, apparently that is when you regain some energy. I could even do more with filming [hobby].” - i5 (male, 76 years old, widower, three children)

Becoming attentive to small things in life (being present, being attentive and connected with the small things)

Q5: “I have a different perspective now. I can really enjoy the small things in life that I usually took for granted.” - i12 (male, 73 years old, in a relationship, three stepchildren)

1.2 Hope

Preserving an open future; combining hope with realism

Q6: “I do hope I can live a little longer, but you never know. I have cancer and that’s a fact.” - i3 (male, 74 years old, married, two children)

To partake in “normal life” as long as possible (continuity)

Q7: “No, actually I don’t have any wishes left, only that I am allowed to live a few more years, that would be good. I don’t have to reach the age of ninety.” - i6

Preserving a positive outlook on life (positivity)

Q8: “I hope, and it is not in my nature, that I will not become downhearted. […] This is how it is and I have to accept that. Look, if I were thirty years younger, then it would be a different story maybe. But from the diagnosis I think: this is how it is.” - i2 (female, 79 years old, married, two children)

1.3 Coping with an unpredictable disease

Surrender to the disease as part of the acceptation process (acceptation)

Q9a: “I do not work in the garden anymore. I have a gardener now, he’s working the garden. But I mean, you have to let go of those activities.” - i10

Q9b: “With this disease that I have, it [death] can happen at any moment […] Right now, I’m living here. With the health I have left, because right now I’m feeling perfectly fine. […] We cannot determine the diseases’ endpoint.” - i8

A good death is a death after a long and rich life

Q10: “And I have a whole life behind me. At this moment, I think I can leave it like that. […] However, as long as I am still hale and hearty, I enjoy life.” i10

To finish your thoughts brings peace (closure, peace of mind)

Q11: “That was the most pressing thing back then. I was at a loss what to do: damn, if I had a breakdown nothing would have been arranged. And this is how I got with [organization]. The arrangements that we made gave me some room to breathe. Made me lead a more careful life. […] Everything is in order now.” - i11 (male, 83, divorced, lost contact with his children)

Main theme 2: Being supported by others

Sub-themes

Related life values

Representative quotes

2.1 “Being there”

Receiving love from one’s fellow human beings: family, friends, religious communities (charity, support)

Q12a:What does it mean to you that they are there for you? A lot. It means I have done well. I get a little pat on the back.” - i6

Q12b: “I visit the church every Sunday. If I can. […]. I do it because I’ve always done it, you get used to it. You know everybody [laughs]. That provides real support. Well, and I also do my evening prayer every night. These old habits.” - i6

Preserving the capacity to be open to your social environment (being connected with others)

Q13: “It was very hard to understand my new situation. To find my way back to my family. You have to be able to express your new situation; to find words that fit.” - i8

To have discussions about the meaning of life (meaningfulness)

Q14: “[I talk] about everything. I talk with my friends and family like I am talking with you now.” - i2

Maintaining independence

Q15: “I am trying to do it myself as much as I can. My daughters support me, if they are able to. Luckily, till now, all goes well. I hope this will last a while.” - i5

Not to become a burden to others

Q16: “Well, then you never get out [your home]. I do not like the sound of that. On a few square meters forever […] And from my children I can’t expect that they will be with me 24–7.” - i12

2.2 Leaving a legacy

Sharing ideas/objects of value with others/ still contributing to society

Q17a: “Sure. We already took care of it all. The kids all know what I have saved and what they will receive. I have got no secrets.” - i6

Q17b: “Currently I am restricted to the bedroom, dining room, and… Listen, if I still, for example, could help those young doctors with communication, I feel useful. I am useful within society […]. If I would have stayed within that tiny room at home, I would have been useless.” - i12

Peace of having arranged all matters important, e.g., finances

Q18: “I already have an executor who takes care of all that needs to be done. Funeral. I already made my death notice. Yeah. I am like “I take care of that, I will write it myself”. They don’t have to [bother] the neighbors…” - i10

Continue to support a vulnerable partner (responsibility)

Q19: “Right now, I’m thinking about what would happen to my demented wife when my health declines. I’m worried about these things.” - i2

2.3 Having reliable healthcare professionals

Being acknowledged as a person; the empathic professional (humanity)

Q20a: “Paying attention. That is, communication as well. And so, I told him [the physician]. I said you know much about medication and side-effects, but people have side effects too. When you hear something, everything inside explodes. However, you [physician] keep on talking. Instead, you could have waited a bit or asked me whether I understand what is told.” - i12

Q20b:And what about that nurse makes him so nice? Well, he is very kind, he receives you very kindly. And then, he says, “such cold hands you have!” [laughs] [..] I like that. […] They are interested. And if they visit me, they say “good morning, how are you?” - i10

Continuity in care and support

Q21: “I had a different doctor every time and so, we wrote a letter and stated that we did not appreciate this […]. Then, we got doctor [name] and he is there as much as possible.” - i2

Being provided with honest information (honesty)

Q22: “I find him very professional. Open, he tells and shows everything.” - i5

Main theme 3:Making end-of-life choices

Sub-themes

Related life values

Representative quotes

3.1 Acceleration and alleviation of death

Maintaining autonomy and dignity, controlling your own life

Q23a: “I am not against termination of life. I would rather end life consciously than slowly degenerating. I have to leave before it muddles along […] If I would let myself die [naturally], I would face a period with death-struggle and misery. Getting old and dying without misery, that is euthanasia […] If I would get really ill and need assistance… if I lose that independency, I want to get out. Then, my time has gone.” - i11

Q23b: “I don’t want to, I have it here, be reanimated. I’ve asked for a medallion, because when your brain doesn’t function for 6 min, your mind is gone. Then, it is only the nursing home where you can sit all the time. I don’t want that.” - i10

3.2 Place of death

Being at home; carrying a personal history; preserving authenticity

Q24:What is the value of being home at that moment [of dying]? Well, we built that [home] together. I value that. We worked hard on it, together.” - i5