Table 5 Examples (indicated as E1 to E8) illustrating the characteristics of palliative care provision

Difficulty in recognizing need

E1

Jane’s social worker described their search: “Jane complained about her stomach and intestines… we thought that was part of her psychiatric illness. In retrospect I think these were the first signs of cancer….We arranged admission to a psychiatric hospital… a forced admission because she refused to go voluntarily. If you work in psychiatry, you sometimes focus too much on mental issues, you forget that it may just be something somatic.”

In the psychiatric hospital no further medical examinations were done. After discharge from the psychiatric hospital, the social workers noticed that Jane was rapidly losing weight. Because Jane had not visited a GP for years and occasionally made remarks about hospital experiences, the social workers contacted all the hospitals in the region to search for more medical information, but no file on Jane was found. Gradually they realized that Jane was probably very ill. Her social worker: “If there had been a medical file, we might have spotted signs of digestive problems earlier”.

Ambivalence towards accepting care

E2

A nurse talking about Mitch: “I persist in motivating him to come to our yearly somatic screening, for instance, but some will never come… Every time, we try to make contact with a person again. We can be very persistent. Even when I see someone on the street or in a shop I talk to him, both during working hours and during my free time.”

No palliative care facilities

E3

A nurse at Anthony’s shelter: “I work in this shelter two days a week, mainly to arrange all kinds of things. … We can do a lot, that’s not the problem. Anthony wants to stay here and, however fragile, some of us sometimes have a little talk with Anthony. But there are different points of views in the team as to how far we can go in offering care for the dying… In this shelter there are no nurses or nurse assistants. But Anthony didn’t want to leave and, besides, what nursing home will tolerate his behaviour?”

Challenging behaviour

E4

The nurse involved with John explained why John had not yet transferred to a nursing home, despite his care needs which they could not meet properly: “John can’t go to the nursing home yet. He won’t stick to the rules. He will persist in smoking in his room. In the past someone was refused care in the nursing home because he persisted in smoking, despite warnings. Some nurses didn’t dare enter the room because they were afraid of him. Therefor John will only be transferred to the nursing home when this behaviour has faded…so, for the final days of his life.”

Unpredictable disease progression

E5

John’s nurse: “..we thought…this will not last long. But one way or another, he recovered again. He was admitted to hospital and we thought this is the end. But then...suddenly…after two days he returned and was on the streets to take his heroin. As if he rose from the dead … I’ll never forget his will to live.”

Pain and symptom control

E6

A social worker: “Anthony persisted in smoking. The pain medication made him muzzy. Even when he couldn’t leave his bed anymore he still wanted to smoke. Because we were afraid he might fall asleep, some member of staff had to go to his room to let him smoke. But often we don’t have enough time to sit there several times a day. Then it is either medication, or smoking…”

Psychosocial and spiritual care

E7

William, who had to stay in his room because of a lack of mobile oxygen: “I would like to arrange some things, the funeral, that I have a bit of certainty… It’s just a surprise to me now. It is in the surprise package. [Laughing] [I: Did you ask for this?] I don’t know. No, well, I’ve mentioned it here a few times… but yes ... that would be nice. They know I’m very ill ... No one has come to me yet, what do you want when you’re dead, what should happen? [I: What do you want] Well, for now I want a mobility scooter ...Now it’s still possible, so I can meet some people.”

Social network

E8

Mitch’s GP: “Of course they clearly missed something [tumour] on the CT. If there had been relatives with him, I’m sure the urologist would have said ‘Well, gosh, what’s up there…?’ I‘ll ask... but yes up to a certain point, of course. It’s because you’re not so emotionally connected to someone. But I often get this kind of thing, that somebody takes less of a serious look at someone. Right, it shouldn’t be that way, but it is.”