Introduction
Methods
Participants
Data collection
Content semi-structured interviews
Content of ACP program
Category | |
---|---|
Current situation | Current health issues, future perspective, resources (psychological support, etc.), relationship with family/friends |
Worries and fears | Anxiety and worries of patients and proxies, concerns with respect to performing household or work, etc. |
(Supportive) treatment | Treatment preference and goals of care form, substitute decision maker, anti-tumor treatment, supportive treatment, supportive treatment in the EOL phase, withdrawal and withholding of treatment, palliative sedation, and euthanasia |
Preferred place of care and death | (Im)possibilities for place of care and death |
Timing to introduce ACP
Barriers and facilitators to participate in an ACP program
Data analysis
Results
Participants
Focus group
Patients and proxies
Living patients N = 8 | Proxies of living patients N = 8 | Proxies of deceased patients N = 5 | |
---|---|---|---|
Age in years at time of interview, mean (SD) | 61 (8) | 57 (10) | 68 (7) |
Gender, no. | |||
Male | 6 | 1 | 1 |
Female | 2 | 6 | 4 |
Not participating | 1 | ||
Karnofsky performance status (KPS) | |||
Median (range) | 80 (80–90) | N/A | N/A |
KPS ≥ 70, no. | 8 | ||
Month since diagnosis | |||
Median (range) | 12 (3–69) | N/A | N/A |
Current anti-tumor treatment, no. | |||
No | 4 | N/A | N/A |
Yes | 4 | ||
Recurrent disease, no. | 3 | N/A | N/A |
Current and previous treatment | N/A | N/A | |
Previous initial | |||
Resection | 8 | ||
Chemotherapy | 6 | ||
Radiotherapy | 7 | ||
Other | 0 | ||
Previous recurrence | |||
Resection | 1 | ||
Chemotherapy | 2 | ||
Radiotherapy | 1 | ||
Other | 2 | ||
Current | |||
Chemotherapy | 2 | ||
Radiotherapy | 1 | ||
Other | 2 | ||
Highest level of education†, no. | |||
Lower education | 1 | 2 | 3 |
Medium education | 1 | 3 | 1 |
High education | 6 | 2 | 1 |
Missing | 0 | 1 | 0 |
Relation to the patient, no. | |||
Partner | N/A | 6 | 5 |
Child | 1 | 0 | |
Not participating | 1 | 0 | |
Duration of the relationship (in years), mean (SD) | 40 (9) | 40 (16) | |
Contact intensity, no | |||
Living together | N/A | 7 | 5 |
Daily | 1 | 0 | |
Weekly | 0 | 0 | |
Monthly | 0 | 0 | |
Religious, no | |||
No | 3 | 1 | 3 |
Yes | 5 | 6 | 2 |
Missing | 0 | 1 | 0 |
If yes, religion important, no. | |||
2 | 4 | 2 |
Reasons not to participate
Content of ACP program
Topic | Relevant quote of participant |
---|---|
Current sitiation | |
Current health issues | Interviewer: “Do you think it is important to ask about the current situation? How are you? Do you have complaints?” Proxy: “Yes, I just wanted to say, things like how are you? What are the problems? What do you think has changed?” |
Future perspective | Proxy: “Yes, you have to be honest and you need to know when the doctors think that you are entering the last phase of life. Because you must arrange practical things.” |
Resources (psychological support, etc.), | Proxy: “It may be that, yes, that one of us, well we are rather open to each other. I mean, I ask my questions to [patient] and do not think, oh I cannot really ask this. And vice versa too. But if the situation is not like that, that is also possible, you can as a patient or as a partner, you can remain with a lot of questions you cannot ask, and that may cause a lot of stress, I think.”Patient: “Yes”Proxy: “At that time I think it is very good that you know, I can still go to someone else, an objective person.” |
Relationship with family/friends | Patient: “Yes, I think that what you are constantly confronted with, is the environment, they often have, they have of course also have delved into your situation, so everyone finds information everywhere and says to you can also do this or whatever. Or there is another article in the newspaper or whatever. Another new therapy for, what is it cancer or whatever. And then I get that article printed out on my desk so to speak, so to speak. You know, that kind of thing.” |
Worries and fears | |
Anxiety | Proxy: “Yes, yes, fear of what is coming, yes. I think, yes, you have to open it for discussion, certainly for the patient, I feel that way.” |
Household, work, etc. | Patient: “Yes, I think, how do you say that? Ultimately it is just the future. What is the future going to bring and what is [..], your income and things like that. Because in the end you will be in a situation where you are no longer fully employable, at work or wherever. And that means a bit of a decrease in your income.” |
Worries of proxies | Proxy: “But yes, in that situation you have to continuously weigh things, and you also have to consider what the children can handle. [..] because at some point, you get a huge field of tension, while you have to keep functioning at work and your family.” |
Worries of patients | Patient: “Yes, that is very important. I am now, I am now with a psychologist. And that is just wonderful, even if people think, what do you do have to do there. But it’s just nice to be with such a person because when you are over, you can just let it go, everything.” |
(Supportive) treatment | |
Preference and goals form | Patient: “But very well. The more, the more clarity you have, the more you will be able to determine things yourself, officially documented.” |
Substitute decision maker | Proxy: “Yes I think that that is very personal.”Patient: “Yes”Proxy: “Because that person might do things that the partner does not, as a matter of speech.” Patient: “No, in that case it is good that you obviously have mentioned that beforehand, or that it is included in the program.” |
Palliative sedation | Proxy: “I mean, say about 30 years ago this did not really exist, it was not done. But nowadays there is simply more possible, yes, and then you should have the patient decide what he wants to do with it.” |
Euthanasia | Proxy of deceased patient: “Yes, it is, I cannot remember if someone had said anything to us about euthanasia. I do not know if I would have liked that. On the other hand, it is not about me. So that, it is difficult.” Proxy: “At the moment there is no longer good quality of life, and she says, well I just really do not want this anymore. I think euthanasia is very important.” |
Withdrawal and withholding of treatment | Interviewer: “Suppose that someone with epilepsy can no longer swallow, that we can reassure people in advance that they do not have to worry about this, but that we can tell them what to do when something like this occurs.”Proxy of deceased patient: “Yes, I asked [nurse] this over the phone at that moment. What did not work anymore. That’s what she said, there are still a few drops, but that lasted very briefly, because I believe a day or 3 later the doctor has canceled everything.” |
Supportive treatment in the end of life phase | Proxy: “In fact you are almost facing the choice, are you going to extend your life or do not you not want to extend life?Interviewer: “Yes what does someone want?” Proxy: “Yes, yes.” I think that something is just, I think, just an issue when it comes to that. And I think that there are not a lot of people who think that that can happen. Because there are of course all kinds of things that can be done.” |
Anti-tumor treatment | *Patient: “You just know, okay, with this type of medication, I might be able to continue for a bit longer, but side effects of these drugs may be that I can only lie in bed, so to speak. So yes, that is not what I want, just saying. That you can make a clear choice between them.” *Proxy of deceased patient: [..] And that is a very difficult conversation. How shall I say that? I mean, if you assume that you know how it will look like in the end, and you know she is dying, then the question is, how do you want to die? And of course, there are a lot of people who do not think about that.” I think one of the problems that exists is, of course, is that a lot of people have trouble thinking about the idea that they should stop treatment. And at the same time, of course, it also has to do with the risks, but also the side effects of a treatment, and if patients still have their dignity.” |
Preferred place of death | |
Possibilities for place of care and death | *Proxy: “But you can only make a decision if you have knowledge of course.”Interviewer: “That is what we want to accomplish with the program.”Proxy: “Exactly.”Interviewer: “Discuss, discuss.”Proxy: “So many possibilities and from there..”. *Interviewer: “Do you think that is important to include this in the program?”Proxy: “I think that it is important, but I think that it is, yes, something that you are not going to discuss in this phase of the disease.” |
Possibility that preferred place of care/death is not possible | Proxy of a deceased patient: “I think this is a very important topic. Because, actually you are a layman, and you do not know what to expect. So I think it is important to discuss this. For the relatives, what they are facing and what they can do.” |