Table 2 Quotations about the theme “Dignity conserving repertoire”

Continuity of self

“Learn to know the person. To talk about, and have knowledge, of their life and history. That one relates to what they have been and sees them as that person. Show interest and curiousity” (Physician)

“That one does it in consultation with the ill person. That one initiates a conversation about how they want to plan their day…” (Nurse)

“Well, the whole time since he became ill, I have told him, ‘You have to tell everyone how it is, it does not need to be in detail, but tell them how it is so you can get much more support’. Otherwise people speculate, why do you look like this, why it is so…. If one can, and has the strength, I think one should be open” (SO)

“Simple support, that gives security even if not used when one does not need it… I have been a little doubtful regarding home care because one wants to be yourself at home, one want to be the same as before” (Patient)

Role preservation

“That they participate in daily issues like paying the bills or calling the plumber if the furnace breaks down. Maybe also include relatives – it is very important not to exclude the one that is ill” (Nurse)

“People that I know – they are not in palliative care but they are seriously ill – they have their interests. One of them likes to bake and others have other interests. One should, sort of, put them in that direction” (Patient)

“At home we have tried him cooking the daytime meal, that is his task, and he has done some smaller renovations around the house....Then he feels that he has something to do, to unburden… he has taken responsibilities for some things that are not usually his tasks, so we have had to shift some roles, actually” (SO)

“Well, when there are children, that one does not have to cope with shouldering the parental responsibilities. Maybe the children do not want to visit their parents as they find it hard. Then one can talk about it. What is possible, what is reasonable, how can you as a parent try to help, for example, a teenager. Perhaps they can visit an hour now, to keep up some kind of a relation, and then go outside, to play and jump. One can be supportive in such things, just by helping them frame their situation” (Physician)

Maintenance of pride

“Some reassurance, as they can be very glad to realise they can still manage things although they might not think so at the time” (Nurse)

“So that one sees the patient the whole way through, and this is what the patient needs help with” (SO)

“That the physician says, ‘I understand you are in pain’, instead of saying, ‘You are very alert for your age’, when I do not feel like that. I have pain here and there and distress, dizziness… ‘But there is not really anything wrong with you, you just make things up’… Well, yes, being acknowledged and listened to, it does not usually help saying, ‘Oh you are so alert today!’ I am actually in pain, I am over 90 years old and having pain and no one seems to care about me having that” (Patient)

Hopefulness

“As long as you can, you do things. For example when I go out cycling, I am so glad that if I can cycle down to Willys and shop. I think it is not too far and even if I will get tired, I get some company there... Then when I get home I can think, this was actually nice. But I have realised the situation. I do not go out shopping new clothes. I use what I have, and then…[it’s] like keeping death away” (Patient)

“One has to look back on what one has accomplished and dream back. Enjoy a long life lived that has been rich. Then that it is coming to its end and one does not have the strength to do things as before… it is good to be able to look at photos, on the phone, computer or Ipad” (SO)

“Focusing on the small goals and meanings in life. That one has a bearable situation in the time still left. It is about Carpe Diem. It might be meaningful and a goal to get out in the autumn sun for a while during this afternoon. It is the smaller world that becomes the goal and meaning. That I manage to meet my grandchildren for a short while. A kind of hope having a small goal. A small and feasible goal” (Nurse)

“And then you talk about the time to a wedding, or to midsummer eve. The man who participated in the midsummer festival in his town for many, many years, he asked me directly: ‘Will I make it to midsummer eve?’ I said yes and then he engaged in his usual chores. Well that is a way to find hope, not thinking too far ahead…” (Physician)

Autonomy/control

“It is difficult, it is tough, to see as a relative or staff, and one has to be very humble to the person och try to ask as much as possible about how they want to have things… so that one can, somewhat, keep them involved even if they really can’t and that one has to take help from relatives to make it as good as possible” (SO)

“Even if the doctors want the best for you, it is not always possible, so I brought that up with the physician. Now it is my quality of life not theirs, irrespective of how well they mean” (Patient).

“That is a question one asks the patient, ‘what do you need to feel you are in control? What is important for you, and perhaps one cannot control everything’… But there might be small parts, such as physical things like coping with pain or wetting oneself, not wanting your wife to see you are in pain, or such things. But they are different things and they overlap. What is important for the person is key. But all parts that we have talked about are needed – the dialogues, symptom relief, aids, everything” (Physician)

“One tries to let them keep control over their lives, the staff cannot take over everything, I think that happens: ‘now you will receive lots of help from us’, and all of the sudden one feels that it is the staff that decides over everything. Sensitive listening… that it continues to be as before, when I want to have my evening tea, when I want to go to bed, the TV program I want to see... one has to adapt to that” (Nurse)

Generativity/legacy

“In their homes, when one sees things, perhaps an interest they have had, something they may have built, some handicraft – one sees this is a person that likes to embroider. Then one can talk about it and ask about that. I mean they feel seen as persons, not as a patient being in pain again” (Physician)

“Sometimes it is like, one is too much here and now. One forgets that there has been a history that is also important. It is important that the staff talk with patients and relatives, what have they done before and how their lives have been. Not just seeing the person in front of you who is ill, but a person that once was well, as well as I am” (SO)

“We once had a patient that had some unfinished business and when she got closer to the end, she felt terrible. She told this to someone, it was something about a son she really wanted to talk with, and then we helped, because she didn’t have any relatives living close by. We helped to get in contact with this son and he came and they met and then, it was just like she got peace., She had such anxiety before that it was almost impossible to relieve” (Nurse)

“When you have let someone down, [it is good] having someone that can help you to unravel it a little. Well we can always do this, instead of saying ‘do not think about that’. It is just that this is what is usually done” (Patient)

Acceptance

“It is the quality of life, and as a palliative patient one has to take that in, that it changes. It doesn’t go away, one is not just as good at things anymore” (Patient)

“People are very frightened, even those dying. It is very important, in that sense, to think it through” (Patient)

“Well it is easier when the communication is good, when it is somehow straight and honest from the beginning, that makes it so easy. That is something one has seen – that it is better telling” (Nurse)

Resilience/fighting spirit

“That they have accepted they are dying, and can say, ‘I know I am dying’. Then one supports them during this time until they are to die. To work for them feeling that there is still some meaning and quality of life… Well there are various patients and individuals, so one cannot generalise and do the same with everyone, but always take into account the individual… Lift them up and sometimes dare to laugh and make jokes” (Nurse)

“…first of all I think one must be genuinely honest and tell how it is even if it feels heavy, so that one knows. Then it is a question, when it comes to medication, what is it that one gets and the effects. If one will receive painkillers, what will it mean, is it so that one will be even more tired or drowsy? One has to be very clear, inform when one does things, what it means, and the effects” (SO)

“Well, one has to cycle with fewer groceries and such things, as I have a problem with my balance, but I can still experience dignity by shopping myself” (Patient)

Living in the moment

“That one should help them to replace and create new routines, give suggestions that maybe you can do like this instead, what do you think, could this work? This might also be a way to influence the situation. Okay, this is how it is and it may be just as good if I do it in another way” (Nurse)

“So one needs some long term planning, but perhaps not planning too much as we don’t know if it can be done next week as then he might not have the strength or something else happens… Well, however one tries in life, everything can be totally messed up” (SO)

“Well, one has to be glad that there are people that can help. That is how I feel about the home care, it feels safe, and I got it explained to me: ‘We will come, we will be there for you’. That felt so good” (Patient)

Maintaining normalcy

“From the moment we got there, we were very well looked after, both us the relatives and mum. Also dad could come and stay for mum’s last days. They took her up in a wheelchair, so she could participate in having breakfast even if she did not eat much, but she could still be up” (SO)

“To be able to have some fun today, one might need help with ADL to keep the strength for doing the fun stuff” (Nurse).

“My daily routines have been quite simple…[do you have support from your wife in accomplishing them?] Yes, it is thanks to her I am still alive…” (Patient)

Finding spiritual comfort

“To help them get in contact with for example, a deacon. First and foremost raise the question, and ask if they need help, volunteer help. We have a list of priests that we can contact…” (Physician)

“When a patient is assigned to a care team one must ask, in some sort of way, ‘Do you have a faith, do you belong to a church or how do you think of a life after this?’ That gives you a hint. ‘Are you member of another church or an atheist, have you left the church or do you have another creed?’ One should not be afraid asking. Just as you ask about pain, you can also ask about faith…” (SO)

“Yes this came up when the contact nurse was here. And if you are at a hospice, there is a hospital church. You can just ask to get to talk with the priest, it cannot be too difficult. And if you belong to another church of some kind, why not ask the nurse, ‘Can you call the pastor or the deacon?’ Deacons are good on talking, they say” (Patient)

“[Your mentioned before that one can get consolation from nature] Yes, definitely… One hopes that there are some relatives or friends that can take you out in a car and maybe stay at a rest area. Then one does not do much more than sit there if they are having difficulties walking or such things. Because, nature has always been important for me, especially if one’s thoughts are dark….” (Patient)