Background
Methods
Terminology
Research methods
Ethical aspects
Recruitment and research population
Case number | Background | Illness | Patient Interviewed | Family interviewed | Professional Interviewed |
---|---|---|---|---|---|
1 | Tu* | mesothelioma | ------ | daughter | GP |
2 | Mo** | bladder cancer | ------ | ------ | GP |
3 | Tu | stomach cancer | ------ | ------ | GP |
4 | Mo | bronchial cancer | patient | wife brother-in-law | pain specialist nurse home care nurse GP |
5 | Tu | breast cancer | patient | social worker. | |
6 | Mo | lung cancer | ------ | dife | GP |
7 | Tu | lung cancer | ------ | ------- | pastoral worker |
8 | Mo | stomach cancer | ------ | wife | GP social worker |
9 | Tu | brain tumor | ------ | ------- | nurse GP |
10 | Tu | lung cancer | ------ | ------- | oncology nurse |
11 | Mo | breast cancer | ------- | oncology nurse | |
12 | Tu | stomach cancer | ------ | ------- | hospital nurse |
13 | Tu | breast cancer | patient | social worker | |
14 | Mo | brain tumor | patient | mother 2 sisters brother | GP oncologist pastoral worker |
15 | Mo | lung cancer | ------ | daughter | GP |
16 | Mo | breast cancer | ------ | daughter | GP |
17 | Tu | bowel cancer | ------ | wife son | oncology nurse |
18 | Mo | stomach cancer | ------ | sister | home care nurse |
19 | Mo | bowel cancer | ------ | daughter | |
20 | Tu | stomach cancer | patient | daughter | hospital nurse |
21 | Mo | lung cancer | ------ | daughter | social worker oncologist pain specialist transfer nurse |
22 | Tu | bone cancer | ------ | GP home care nurse | |
23 | Tu | lung cancer | ------ | home care nurse | |
24 | Tu | lung cancer | ------ | wife son daughter | GP |
25 | Mo | bowel cancer | ------ | wife | GP |
26 | Tu | lung cancer | ------ | wife daughter | GP |
27 | Mo | stomach cancer | ------ | daughter | GP home care nurse |
28 | Mo | brain tumor | ------ | daughter | GP |
29 | Mo | bowel cancer | ------ | husband sister-in-law | medical specialist |
30 | Tu | bowel cancer | ------ | oncology nurse specialist | |
31 | Mo | ovarian cancer | patient | daughter | oncology nurse home care nurse GP wound nurse |
32 | Mo | breast cancer | ------ | sister | |
33 | Mo | breast cancer | ------ | daughter | nurse home care nurse |
Interviews
Analyses
Results
Views of patients and their families on 'good care'
Curative care up to the end
He was really too weak for a third and fourth time, but we said, we'll just go on, we believe in it; he'll get better, we won't stop, we'll go on (daughter of a Turkish male patient).
He went to a big professor in Istanbul. And then they said, why did you let them take away a piece of your lung? That makes it worse. If you hadn't done that, we could have tried different treatment (son of a Turkish male patient).
Maximum care
We asked for a second opinion and we wanted the chemo cure, just to see whether it would work. Until we said, yes, it's no good. Of course, you have to accept that. He couldn't say it, we did that for him. It was a battle, over and over again, we are still going on. We won't accept 'no'. Hoping that it might work, that some other treatment might be possible (sister of a Moroccan male patient).
Keeping hope alive
You can say it, but then tell us (relatives), as, if you tell him, he'll give up (wife of Turkish male patient).
When I heard that the tumour was malignant, I couldn't tell him and I asked my doctor not to discuss this with my father, he needs morale, hope (daughter of Turkish male patient).
I didn't tell my mother either. I had all the information, I knew what was happening. I did tell my father what the possibilities were. But I don't believe my father ever told her (daughter of Moroccan female patient).
Personal attention and being treated with respect
He was a very good doctor, one of the old school, more experience, you could see that straight away, more patience. A doctor should give you the feeling 'We are here for you'. Other doctors were more like butchers, they were in a hurry (daughter-in-law of Moroccan male patient).There were two nurses, they had no feel for social skill, they were, how can I put it, they were a bit clumsy, it was a conveyor belt, as the saying goes, but with them you could feel emotions, warmth and love and she's still got those nurses' (daughter of Moroccan female patient).
My question is why they take such care in Germany (a country where many Turkish people also live, FMdG) and not in the Netherlands. Yes, maybe it's just us, maybe it's different for the Dutch and only like this for Surinamese, Moroccans and Turks (son of a Turkish male patient).
Devoted care by the family
And my brothers? They weren't really in the picture, they've got their own stuff, it was more my sisters and I who were involved in the caring (sister of Moroccan female patient).
My mother had a lot of visitors. The doctors were frustrated with us. They said. 'There are such a lot of relatives dropping in, your father needs rest'. Yes, well, the younger ones understand that. They came by, just to pay their respects and left again. But the older ones, for example, my uncles and aunts, they came and sat by the bed. And my mother enjoyed that too (daughter of Moroccan male patient).
Avoiding shameful situations
They didn't want a district nurse because they were afraid of gossip, gossip, gossip. When it was made very clear to them that these were people who didn't come from our town, the problem suddenly became a lot less threatening. The local home care service hired a Moroccan woman from elsewhere, who spoke Berber and Arabic (GP of Moroccan male patient).
If it is an older woman, then they want a woman to come. Because, however sick you are, you are not allowed to have a man at your bedside. And vice versa (sister of a young female Moroccan patient).
Dying with a clear mind at the time appointed by God
From the moment that her brain was affected, they discussed with us whether we would not rather keep her asleep. I had the feeling that we were being put under pressure, that we couldn't really make our own choices. I didn't want that. It is not permitted to let someone meet death like that (daughter of Moroccan female patient).
I can imagine that if I were in a stage where I just didn't want to go on, then I could just stop taking the medicine. But for my parents, that's not an option. This is very different from Dutch culture and it was new to me, too. It is not allowed, you are not allowed to commit suicide in Islam, you have to do everything to, as long as you're still alive, it's good, you are not allowed to end a life (daughter of a Moroccan female patient).
Care in the country of origin
My father's oldest brother came up with the idea. He said, I know hospitals, because he studied in Turkey, he's got friends who are doctors in Turkey. And those doctors have friends who are special for those diseases. They come from America and so on. My uncle says to my father, get up, go there, you've still got a chance (son of a Turkish male patient).
Burial in the country of origin
We had an insurance. You just call their number when you need them and everything is organised. Then I said goodbye to him and he was taken to another room. The man came the next morning, he was ritually washed and laid out in the mosque and the next day I was able to go with him to Morocco (wife of a male Moroccan patient).
In our culture and according to our faith, once someone dies, they must immediately be undressed and wrapped in cloths and buried as soon as possible (daughter of a male Turkish patient).
Reactions from care providers to these specific views
Curative care until death
That was what the children wanted to know, too. Could they be sure that father would receive the best possible care? People don't want to go to the hospital, but they don't want to miss out on any possible chances. It's no good saying that there is nothing more that can be done, you must do everything possible and, then, if father does die, everybody is satisfied (GP of Turkish male patient).
I am dissatisfied as I had hoped that I could arrange for discharge from hospital to everyone's satisfaction. Then it's not nice to see that it hasn't worked. That people were so upset at home. I think that's sad. But what else could I have done? I don't know. There were moments when I thought, 'Am I being used... umm... or are we working together?' And I never did get it under control (transfer nurse of a Moroccan male patient).
Maximum treatment
I know that it was very difficult for me to convince them of the fact that radiotherapy was really not an option, that it was no longer possible. They took the attitude, more or less, 'it worked in the past, so it should work again' and 'can't we go to another hospital, then?' (GP of a Moroccan male patient).
Keeping hope alive
There was at that moment no possible opening for a real discussion of what the prognosis was. They were all deep in denial, really old-fashioned, like we had with Dutch patients too, thirty years ago (GP of Moroccan female patient).
I think that a patient must know what the matter with him is. And nobody should talk about a patient without the patient being aware; this leads to what in your terms is a conspiracy of silence (oncology specialist of Turkish male patient).
I know that many Turkish and Moroccan patients, people, do not want to talk about the subject of 'dying'. But look, I talk with them about everyday things, things to do with care, yes, general things (nurse of Turkish patient).Some of them, however, find that it is difficult to maintain silence if their relationship with the patient becomes confidential and he then asks for information.
Attention and respect
I don't know what made them mistrustful, but I think that they thought, 'We are being treated as though we're inferior (nurse of Turkish male patient).
A patient is for me the central point. And I often start by saying, I will only talk to you. If other people call and say, explain what's going on, then I will refer them to you. If you find it difficult to explain things to your family and friends, then I will be happy to help you, but I am not going to explain it to them myself. Because I want the patient to keep control of his part of the treatment, I want him to have the same information as his family (oncologist of Turkish male patient).
As I came in, I was lectured by her in the hall on what I could or couldn't discuss with him; it was as if she were giving me instructions (GP of Moroccan male patient).
Devoted care by the family
And there were sons as well, but they didn't do that much. Well, sons in general tend to do less. Certainly Moroccan sons, I'm afraid (oncology specialist of Moroccan male patient)
It's more of a case of reacting when a problem occurs, unfortunately you can't really take preventive action, it's more dealing with the problems as you meet them (GP of Moroccan female patient).
I keep trying to see whether it's possible to talk about the possibility that things might be coming to an end. After all, it's typically Dutch to want to arrange things and, in some sense, to say goodbye ahead of time. The Dutch are quicker to do that, often they suggest something themselves, like shouldn't we put a bed downstairs. And then I order it. With this family you have to be much more careful with everything, they need time to think it over (nurse of a Moroccan male patient).
We appointed one person to be the main point of contact, her sister. She's a bright girl, I know her well as she suffers from stomach problems and so I've seen her a lot. She was going to help as her mother still hardly speaks any Dutch (GP of Moroccan young female patient).
Avoiding shameful situations
I noticed that I was carrying out fewer physical examinations than I would with someone with a Western background, say. Actually, I don't think that's right, so now I do what I normally would, I want to look at her stomach, I have to sense what she finds acceptable or not, and what I think is medically necessary and then find a happy medium (GP of Moroccan female patient).
So, at first, he looked after his own personal care. But then, after a few weeks, this got more difficult, and he managed to admit it. But we weren't allowed to do it for him yet, Then, after another few weeks went by before he admitted that he really couldn't do it any more, then we were allowed to do it, the three of us, with him keeping his underpants on under the shower (nurse of a young Moroccan male patient).
Dying with a clear mind without hastening death
I said, if I don't do this than I'm committing a criminal offence, as I am obliged to do my best as a doctor to alleviate his suffering. If you carry out euthanasia without permission, you are acting against the law, this isn't euthanasia and if I don't help him properly now with the drugs that will make him sleep, then I am not a good doctor and then I am committing a criminal offence. Then they accepted it (GP of a Moroccan male patient).
A needle was put under her skin with a pump containing a very high dosage of drugs to make her sleep. But that was adjusted during the day so that she could still interact with her daughters. The daughters did not want her to lose consciousness, so she wasn't completely in a coma. She died shortly afterwards (GP of Moroccan female patient).
Then I explained that we were not allowed to give anyone a lethal injection just like that, only that you are obliged to, if someone can't breath or is in a lot of pain and God or Allah says that too, because you are not allowed to let anyone suffer unnecessarily. It is my duty to see that no-one suffers unnecessarily. They accepted that (GP of Moroccan male patient).
Care in the country of origin
My experience is that many Turks want very much to go back to Turkey to get a second opinion there and I don't think that's a bad thing at all. I can imagine very well how they feel (GP of Turkish male patient).
Then the daughters said that he should go to Morocco, because he would be treated there and he could die there too. I said, 'You decide, but I don't know what the medical and palliative care is like there'. I gave a brief outline of what I as their GP could do, together with the hospital, with pain relief and in the case of mental confusion. And that I was worried about what it would be like in Morocco. Then, after a while, they decided to stay here after all (GP of Moroccan male patient).
I didn't get a 'fit-to-fly' recommendation, and then the ambulance won't take him to Schiphol (airport) because the airline probably won't take him. The family was very angry; they had already bought a ticket for him. Then we decided to take the man off our books. We removed the oxygen. That was OK. Then we started using morphine plasters instead of the morphine pump. I found out for them which ambulance taxi they could call. The sister had told met that he was taken into hospital in Turkey and put on a drip and that the doctors said he would get better, but he died anyway (cancer nurse of Turkish male patient).
Burial in the country of origin
My experience with patients is that have already arranged all this. Before you know it, the imam is there to take over (GP of Moroccan male patient).
With Dutch patients, I would go to offer my condolences, but they had left for Morocco pretty quickly. I put a note in their letterbox to ask if they would get in touch with me. They appreciated that, but I felt it took a long time. Then I thought, maybe I should call myself? I don't want to intrude. That was the final phase for me (GP of Moroccan male patient).
Discussion
Values of Dutch professionals | Values of families with a Turkish or Moroccan background |
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Improving quality of life | Striving for cure up to the end |
Fully informing the patient to reach shared decision making and to realize advanced care planning | Keeping patients' hope alive, therefore the family decides how much information can be given to a patient |
Giving sufficient pain and symptom relief | Ensuring that the patient dies with a clear mind |
Giving optimal care in the Netherlands | Using opportunities for care in the Netherlands as well as in the country of origin |