Background
Methods
Study design
Study participants and recruitment
Data collection
Analysis
Results
Respondent | Gender | Age | Department | Hospital (centre) | Years of work experience | (work) Experience/training in palliative care |
---|---|---|---|---|---|---|
N1 | F | 30–39 | Nurse (internal medicine) | University hospital (1) | 7 | |
N2 | F | 40–49 | Nurse (internal medicine/oncology) | University hospital (1) | 19 | |
N3 | F | 20–29 | Nurse (pulmonology) | University hospital (1) | 4 | |
N4 | F | 20–29 | Nurse (cardiology) | University hospital (1) | 5 | Extracurricular courses |
N5 | M | 50–59 | Nurse practitioner (cardiology) | University hospital (1) | 37 | Course on end of life communication |
N6 | F | 30–39 | Nurse (palliative care team) | General hospital (5) | 22 | Palliative care team member, specialist training |
N7 | F | 40–49 | Nurse (pulmonology) | General hospital (5) | 17 | Extracurricular course |
N8 | F | 30–39 | Nurse (internal medicine) | University hospital (1) | 2 | |
N9 | F | 20–29 | Nurse (internal medicine) | University hospital (1) | 3 | |
N10 | F | 20–29 | Nurse (internal medicine) | University hospital (1) | 1.5 | |
R1 | M | 30–39 | Resident (internal medicine) | University hospital (1) | 2.5 | |
R2 | F | 30–39 | Resident (internal medicine) | General hospital (2) | 0.5 | |
R3 | M | 30–39 | Resident (cardiology) | University hospital (1) | 6 | Extracurricular training |
R4 | F | 30–39 | Resident (nephrology) | University hospital (1) | 6 | |
R5 | M | 20–29 | Resident (cardiology) | General hospital (4) | 0.5 | |
R6 | F | 20–29 | Resident (geriatrician) | General hospital (6) | 2 | |
P1 | F | 40–49 | Oncologist | General hospital (2) | 12 | Palliative care team member |
P2 | M | 50–59 | Oncologist | General hospital (6) | 14 | Extracurricular courses |
P3 | M | 40–49 | Geriatrician | General hospital (6) | 19 | Worked in palliative care unit |
P4 | F | 50–59 | Nephrologist | University hospital (1) | 30 | |
P5 | M | 40–49 | Geriatrician | General hospital (5) | 17 | Palliative care team member, extracurricular courses |
P6 | M | 60–70 | Pulmonologist | General hospital (5) | 31 | Palliative care team member, specialist training |
P7 | M | 60–70 | Internist | General hospital (3) | 31 | |
P8 | F | 40–49 | Pulmonologist | General hospital (7) | 11 | Palliative care team member, specialist training |
P9 | F | 40–49 | Cardiologist | University hospital (1) | 12 | |
P10 | M | 50–59 | Nephrologist | General hospital (4) | 25 | |
P11 | F | 40–49 | Cardiologist | University hospital (1) | 9 | |
P12 | M | 50–59 | Internist/Geriatrician | General hospital (3) | 25 | Educator in palliative care |
Defining the palliative phase
“You have of course the terminal phase, where you expect the patient to die within the foreseeable future. That is, then you are very active with providing palliative care. But palliation, in my opinion, can also mean you are not providing terminal care, but you are active with the end of life.”(P3 geriatrician)
“How long the foreseeable future is, that is complicated. When you know that death because of the underlying disease is certain, but yes that is difficult. Some patients will die somewhere between now and 30 years. That of course of is not really the palliative phase. Let’s say the last months. Yeah maybe shorter. I don’t know.” (R5, resident cardiology)
Prognostication
“Look, the difference between, for example, the palliative phase in an oncological patient and the palliative phase in a heart failure patient . . . if you have an untreatable metastasized lung carcinoma, then you’ll die. That is, that is certain. And with heart failure, you know you’ll die earlier, but you don’t know when.” (N5, nurse practitioner cardiology).
“It is often nurses who already experience a sort of feeling in their stomach, a sort of feeling like ‘what are we actually doing?’ If you have the feeling like ‘what are we actually doing’ it is a sign that something is up.” (N8, nurse internal medicine department).
“There are no good prediction models. It’s more a like an individual clinical glance. What have you seen before? And you should always be careful with going with your own gut feeling and your own experience, because your own experience does not have to match with the patient that is sitting in front of you, or laying, or panting.” (R3, resident cardiology).
“But in the end, people themselves see that there is no more hope. . . . And then you eventually see somebody gives up. . . . You see that the light in their eyes dampens, and you see that because you know the person so well. . . . So the moment you see that, you know what the situation is, even though you don’t have any numbers.” (N5, nurse practitioner cardiology).
“I think, however, that that is a pitfall for especially experienced physicians . . . that you get attached to a patient and don’t want to acknowledge that it is going to end soon. And that is something I do think exists.” (P1 oncologist)
“But one of those checklists, I think you could use them in clinical practice, definitely. But I do think you need to keep in the back of your head that it is not black and white. So . . . a checklist might not be applicable for each patient.” (R2, resident internal medicine department)
Treatment trade-off
“Some people say that you can’t cure COPD, so everything you do is per definition palliative, but I think that’s nonsense. There is a group of people with COPD that are limited by their dyspnea or fear, and those are the people, if you ask me.” (P8, pulmonologist).
While patients’ opinions on treatment continuation are considered an important part of assessing treatment trade-off, some physicians wait for patients themselves to mention they want to quit or not start treatment. Furthermore, physicians describe they need to have tried all treatment options before ‘accepting’ somebody is in the palliative phase. They described not wanting to have failed in exploring all diagnostic and treatment options that are possible:“Yes, but then it shouldn’t be that . . . at a certain moment you agree that, well, there are no treatment options left, … she (a patient with heart failure) dies within 24 hours. Then you can’t do anything anymore. See, then you are a rather late.” (R6, resident geriatrics).
“And you don’t want to admit too quickly, so you want to first thoroughly have explored all different options you have before you say ‘there is indeed really nothing we can do anymore’. So I think you should really have a complete picture and have discussed it with everyone before you say ‘we really have considered it, but it’s a bridge to far’.” (R5, resident cardiology).
“Like, we are going to improve the nutritional status and we will do this and that and we are going to do everything optimally for two weeks. And if after two weeks it is still getting worse, then we quit.” (R4, resident nephrology).
Patients’ preferences and needs
“I think that the moment they become very limited in their functioning, and especially when they, because of it, are not having any fun in their lives, that conversations are needed, like ‘what is it you actually want, and how can I assist’. Yes, so how severe do they find their own suffering, and how much is it obstructing their quality of life.” (P12, geriatrician).
“And she marked that phase herself because she herself indicated that she did not want any medical interventions anymore.” (P8, pulmonologist).
“And we as nurses are apparently more accessible, I think, because you have the function of a nurse”. But more accessible to share it with us than with a physician, because when the physician comes by and says, “Well, we are going to this and that and tomorrow we will test that’, then they say”, “Yes, off course”. And we walk in half an hour later and then they say, “Yes, actually I don’t want that, I don’t want those tests anymore.” (N4, nurse cardiology department)
“It lies a little in recognition because it is being obscured, because you are not getting all the information and you often see that the functioning is described better . . . Yes, then you don’t hear how bad somebody is functioning on their own.” (P12, geriatrician).
Interprofessional collaboration and responsibilities
“And of course consultation with a colleague, like: ‘Well, this is what I see. Do you see that as well?” (P11, cardiologist).
Many nurses said they are better at identification because they work more closely with the patients. However, some nurses mentioned being hesitant to tell physicians they consider a patient to be in the palliative phase. They do not want to be seen as ‘giving up’ on the patient or that they doubt physicians’ expertise. Physicians, however, mentioned they consider nurses important in signalling and take their opinions seriously:“Well then I tried to assess how this woman functioned at home. Well, the last years everything had become more difficult (…) And , yes her life had become increasingly more restricted. And then I consulted with her GP.” (P7, internist)
“Having the guts to say that you think the treatment or options that we are offering to the patient, well if they are in fact useful? Are we . . . doing the right thing? Well then maybe you are not just undermining the physician’s medical policy. But also, in my own eyes, I also have the feeling that when you say that, I don’t want to help the patient anymore” (N3, nurse at pulmonology department).
“I think that’s a difficult issue. We see more and more that severely ill patients come to the ER, and then it’s not just their acute illness, but everything that was already happening before. Heart failure, the chronic leg ulcer, everything together. And that makes you think ‘yes, should I be the one that all of a sudden, I don’t know you, be the one to say, well actually we are more in the palliative phase.”(P5, geriatrician)