Preceding short quantitative survey

Of the 31 patients, 29 had statutory health insurance and two of them had private health insurance. Table 1. shows the living situation of patients during treatment at the PDCC-AA.

Table 1. Living situation during treatment at the PDCC (multiple answers possible)

The main diagnosis was cancer (83.9%), followed by cardiovascular disease (9.7%) and other (6.5%). About 64.5% (20 out of 31) of patients stated that inpatient hospitalization could have been avoided.

Qualitative data

We have extracted the four following categories deductively : (1) alternatives to treatment at the PDCC, (2) symptom relief, (3) sense of security, (4) “everyday life framing” (normality of everyday life). The citations are cited with age of the interviewee and diagnosis of the referring patient and numbers and letters. A number indicates that the citation is from a patient (e.g., 1002); a number and a letter indicate that the citation is from a relative (e.g., 1003B).

Alternatives to treatment at the PDCC

As one objective of the evaluation, this category was deductively derived a priori. It was divided into the following three inductively built subcategories:

Referral

Patients and relatives described how their path to the PDCC began. A total of 32 statements in the interviews with relatives and eight in the interviews with patients were assigned to this subcategory.

Patients reported that effects of chemotherapy and related recommendations of the responsible oncologist or referral after an inpatient hospital stay were their ways to the PDCC.

Relatives reported other “access routes” to the PDCC. Some reported that contact with the PDCC came about through “snowballing” (e.g., contacts who had experience with the PDCC or had heard about it before).

“It came from my sister, who in turn was being treated by a physiotherapist for her cancer, (…). And then this lady said, so whether that wouldn’t be, yes, to consider, that he introduces himself to the PDCC”. (1028B, 52y, diag, of pat.: cancer, para. 2)

Also, family physicians were frequently mentioned.

“And then she discussed it with her family doctor. And this family doctor then recommended this PDCC to her”. (1037B, 54y, diag. of pat.: cancer, para. 5)

Furthermore, according to the statements of relatives, many patients were made aware of the possibility of the PDCC on various wards of the Aschaffenburg-Alzenau Clinic.

“So then we were made aware of the PDCC by the clinic, also for the reason that my father had strictly refused to be treated as an inpatient. He wanted to avoid by ‘hook or by crook’ being treated as an inpatient in a hospital”. (1047B, 41y, diag. of pat.: cancer, para. 5)

Expectations/Fears

All statements dealing with expectations and/or fears were assigned to this subcategory. In total, patients made 32 statements and relatives made 21 statements on this topic. Patients often stated that they had no expectations of the PDCC at first.

“Well, if I’m completely honest, I didn’t really have any expectations at first, because I first thought, hm, let’s see what happens there anyway (…)”. (1032, 61y, diag.: cancer, para. 55)

Most reported having hope for symptom relief or improvement in quality of life before visiting the PDCC.

“Expectations, yes, that it would get better with the water in the lungs. That was my hope”. (1009, 64y, diag.: cancer, para.105)

Many stated that they had hoped for support and contact persons.

“Insofar as expectations, (…) that is the expectation that I have a competent contact person on topics where one simply has no contact person in the other hospital business or health business due to lack of time”. (1005,63y, diag.: cancer, para. 54)

Many were also sceptical about the PDCC or imagined something different under the term “palliative” than they then experienced at the PDCC.

“And that’s when I got scared at first, said ‘Oh dear, the last stop (…)’. They said ‘No, that has nothing to do with it at all’ and told me about their services, and I was also pleasantly surprised after the first treatment”. (1008, 73y, diag.: cancer, para. 96)

It is also clear from the reports of the relatives that there was often a startled and frightened reaction to the word “palliative”.

“‘There is also the possibility to go to the palliative care clinic’, which was like a shock at first, yes, because it was- ‘palliative’ is such a thing, that one avoids (…)”. (1030B, 61y, diag. of pat.: cancer, para. 7)

Alternatives to treatment at the PDCC

As a third subcategory, alternatives to treatment at the PDCC were enumerated and assigned in further subcategories. Patients often saw no alternative.

“There weren’t so many options, especially from the, yes, from the type and process of how the treatment in the day clinic is. I hardly experienced that otherwise, or nowhere”. (1007, 72y, diag.: cancer, para. 15)

One patient feared being alone without support at home.

“There I would have remained alone with my fear and would also be here in this house and would probably have more medication consumption (…)”. (1054, 74y, diag.: cancer, para. 7)

Receiving care by established specialists was mentioned as a further alternative.

“I believe, then my dad would have nothing else, just the doctors, the “normal” doctors, where one comes and goes, to the urologist and to the lung doctor. And yes, then he would have just run on from doctor to doctor, I say”. (1052B, 34y, diag. of pat.: cancer, para. 13)

The patient’s own GP was also named as an alternative.

“(…) or it should have been done by the family doctor, but I don’t know whether he knows so much about metastases, about bone pain, because in the PDCC there are real experts (…)”. (1018, 58y, diag.: cancer, para. 5)

Also, the emergency room of the hospital would have been the alternative to the PDCC for some.

“And I then, I think, two or three times he even referred me to the emergency room, where I felt very out of place, because I think an emergency room is a completely different thing when people are taken from the highway by helicopter or something else than like a woman sitting there who has a big belly and can hardly move. So I always felt very out of place there, (…), the first time I was there, I waited nine hours to be seen by the doctor”. (1017, 69y, diag.: liver cirrhosis, para. 4)

Symptom Relief

All statements dealing with symptoms and their changes over the treatment period were assigned here. The a priori built category of symptom relief was further subdivided into three inductively built subcategories:

decisive symptoms,

perceived helpfulness of treatment,

changes in symptoms and problems.

Decisive symptoms

In this subcategory, all statements about symptoms prior to admission to the PDCC were recorded. Patients themselves and relatives predominantly stated that severe pain was the decisive factor.

“Insane pain all over the body. Nerve pain at night, my legs, everything hurt me, really everything. And it actually forced me to, let’s say, do something. And that’s when I went to the day clinic, yes, for that reason”. (1033, 68y, diag.: fibromyalgia, para. 5)

One relative also saw the pain symptomatology from the patient as decisive, which is in connection with the early integration in what she sees as a suitable form of care.

“Mainly pain management, and also knowing that the treatment options are reducing more and more. He can’t do chemo indefinitely anymore, and there will be little therapy still available afterwards”. (1055B, 45y, diag. of pat.: cancer, para. 5)

Psychological problems were also named as a decisive reasons to come to the PDCC.

“So it was like, yes, we just couldn’t cope at home anymore, I must say. So the pain was getting worse and worse. The psyche became more and more unstable”. (1033B, 41y, diag. of pat.: fibromyalgia, para. 8)

It was further stated that the need for invasive measures was decisive.

“Well, as I just told you, it was just that, this ascites, this accumulation of water in the abdomen, which becomes more with each day and I can then also walk worse, get less air, it was just decisive to present me in the palliative day clinic to have the ascites sucked out, yes”. (1017, 69y, diag.: liver cirrhosis, para. 2)

Perceived helpfulness of treatment

There were frequent statements about whether treatment in the PDCC was considered helpful. It was reported that stays in the PDCC allowed the patients to deal with their illness in a protected space.

“(…) when he comes home, (sighs), he is a bit more (…) calmer, because it is again a different - a different way of dealing with the topic of illness, with the topic of death, with the - than it is handled in the family and he can also simply come to rest there probably (…) and at the same time is cared for”. (1055B, 45y, diag. of pat.: cancer, para. 9)

Psychosocial care and therapy were also frequently described as supportive.

“Well, because, yes, I say so, I just feel comfortable. I don’t go there on Friday with any uneasiness, but I go there with a joyful feeling, because I know I’m in good hands there and I can discuss everything with anyone at any time (…). That alone is a good feeling for me”. (1003, 64y, diag.: cancer, para. 53)

Invasive measures were also seen as relieving and helpful.

“They pulled water out of me (…). I was a bit afraid of that. And I almost didn’t notice it at all. It worked for me too - I was quite surprised. And the water they let run out was three and a half litres the first time”. (1013, 69y, diag.: cancer, para. 68)

“The doctor can see if she has water in her lungs again, always does an ultrasound right away and that it doesn’t get as bad as it was last time. It’s just good for her, every 3 weeks to visit the day clinic”. (1004B, 69y, diag. of pat.: cardiovascular disease, para. 25)

Some statements were also made regarding pain therapy and medication adjustment.

“And there they have then also begun (…) this cannabis-therapy- and then additionally cortisone prescribed. And I have to say, that just stabilized his general condition a little bit. That did him good. And I don’t know if he hadn’t been in palliative care, whether another doctor would have done it that way”. (1022B, 67y, diag. of pat.: cancer, para. 21)

Changes in symptoms and problems

In this subcategory, all statements were taken into account that referred to the change in all types of symptoms and problems after admission to the PDCC. Patients made 39 statements and relatives made 64 statements. Improvement in (pain) symptomatology was mentioned the most.

“(…) Last year, in spring, she had so much pain, she was actually occupied with her pain the whole time, and assisted dying became a topic, you know. So, how long do you have to go through something like that? (…) And that has completely disappeared again as a topic, simply because she HAS less pain”. (1046B, 52y, diag. of pat.: cancer, para. 35–39)

In addition to medication, additional co-therapies were also described as helpful.

“They were super great therapists all around. So my wife has had a lot of problems with her back and she got really great massages right at the beginning, which really made it easier for her to move”. (1030B, 61y, diag. of pat.: cancer, para. 7)

Improvements in psychosocial issues were also reported very often.

“Yes, well, the complaints don’t go away until the liver somehow resumes its ‘duty’ or at least partially resumes. But it, yes, from the mental condition is just much much better, because I know, if something comes up, I can go there”. (1017, 69y, diag.: liver cirrhosis, para. 40)

Sense of security

This category was derived deductively from the results of the evaluation by Schneider et al. (2015) [12]. All statements dealing with the aspect of security were included. Furthermore, we derived the following three subcategories inductively:

time,

comprehensive competence and responsibility,

confidence in dealing with one's own illness.

Time

The aspect of time was also found in the analysis of Schneider et al. (2015) [12]. Patients particularly emphasized the time that medical staff took for detailed discussions.

“(…) and was then just pleasantly surprised that the doctors have time there, right, that it is not just a 5-minute consultation then, of ‘How are you?’. Aha, well, we’ll write this and that down, and then you’ll be fine and goodbye, ‘No, as I said, they have time or take their time (…)’”. (1044, 57y, diag.: cancer, para. 9)

The “time-factor” was especially seen as a source of security.

“(…) because I know there’s someone looking over all the things every month. I always take all my medical files with me and the blood work. And someone takes time and just looks over it, that everything fits, exactly, yes”. (1024, 48y, diag.: cancer, para. 21)

Comprehensive competence and responsibility

This subcategory was further subdivided into therapeutic services, social services support, and medical consultation. In total, 134 statements were made by relatives and 164 statements were made by patients in this subcategory. Regarding therapeutic services, it was frequently reported that creative therapies were rather helpful.

“The physio is a special story for me anyway, because I have metastases in almost all bones. So that helps me. The music therapy or art therapy, that are also- so there I was really very sceptical, because I’m not a musical person, (…) but I must say now, I would miss it very much, (…) that is totally relaxing, so I can totally switch off (…)”. (1055, 47y, diag.: cancer, para. 48)

Similarly, psychological support was described as supportive.

“The- yes of course, the psycho-oncology, there I can talk about all problems (…). I mean, you have problems already, first of all to process that you are suddenly incurably ill, the whole family situation, and it also affects the whole family at once. (…)”. (1018, 58y, diag.: cancer, para. 15).

Social services support was also mentioned.

“These whole, these whole things, where you normally have to fight, have to run, you know certainly, where you have to go everywhere, make applications, and then they check, and there will be this and there will be that. It’s much easier there. As I said, I would only have to say that I would like to have information about this and that, and then someone would come and advise me. So I think that’s also very very good, especially for someone who is seriously ill and now can’t go everywhere to Pontius and Pilate and introduce himself and-so it’s good”. (1003, 64y, diag.: cancer, para. 39)

The medical consultations and visits as a security-giving aspect in the sense of comprehensive responsibility were frequently mentioned by both patients and relatives.

“(…) that reassures me very much, because I know that this is my point of contact, which then provides me with relief and also ensures me a better quality of life at that moment”. (1020, 37y, diag.: cancer, para. 15)

“And that’s a whole other level of security, and my wife has that too, because when you know you have a contact person, they know you personally (…). And that is a completely different security, a completely different feeling than if you had to go to the hospital every time (…). And there it is just, there you know, either you have (immediately) a doctor at hand or they call back”. (1006, 55y, diag.: cancer, para. 49)

Confidence in dealing with one’s own illness

This subcategory refers to all statements on the topic of confidence in dealing with the disease. A total of 46 statements from patients and 76 statements from relatives were assigned to this category. Patients emphasized that the PDCC offered them a lot of confidence in dealing with their disease.

“(…) And I have become more confident now, so I also notice, (laughs) yes, exactly. (…) Yes, I hear- so the oncologist has just always prescribed and prescribed. And I just took it. And now I can rather, yes, give contra. (laughs) Yes, or ask whether one can reduce some medication, which I perhaps don’t necessarily need, yes, exactly”. (1024, 48y, diag.: cancer, para. 25–27)

Having a contact person in the PDCC in emergency situations also reassures many interviewees.

“(…) I was standing here in my kitchen and I had to sneeze and, yes, my stomach burst. (…) And the first thing I grabbed was my phone and called the palliative care department, and actually, yes, I could have been admitted to the hospital via the emergency room. But I was told to just come by”. (1017, 69y, diag.: liver cirrhosis, para. 26–28)

It was also reported that knowing that they were receiving regular treatment and symptom control increased their confidence in dealing with their own illness.

“It gives confidence just in our daily routine and my pain. The water in my stomach always comes back. And I just know that it will be gone in a week. It is predictable. That just gives me confidence again”. (1020, 37y, diag.: cancer, para. 41)

“Everyday life framing” (normality of everyday life)

A priori this category was adopted from Schneider et al. (2015) [12]. Analysis resulted in the following two subcategories built inductively:

In total, patients reported this 68 times and relatives reported this 145 times.

Perceived changes in everyday life

Patients and relatives often reported that treatment at the PDCC brought changes in everyday life, which were mainly based on the improvement of pain or other symptoms.

“(…) And then he was really relaxed. And that gave him strength for the whole week”. (1040B, 69y, diag.: cancer, para 0.24)

For some, the improvement in disease-specific symptoms led to positive changes in everyday life.

“My daily life has returned to normal. I was lying down a lot before. And because of that, I also had bedsores. And then this stupid fistula, which can hardly be treated, developed. And there was also the recommendation from them to apply for this soft mattress. And that’s what happened, I got it, and through the consultations and painkiller settings that were optimized in the day clinic, my everyday life has returned to normal”. (1001, 69y, diag.: cancer, para. 55)

Relief for relatives was also mentioned.

“But as I said, during her visits at the PDCC, I could also just do something for myself, I just- I also just went for a walk or I could do my work in peace, without constantly having the pressure then also, oh, I have to hurry, I have to go back to mommy and I have to do this. Or when the phone rang, you were startled, ‘Oh, what is it now?’. And that was simply not the case during her visits at the PDCC”. (1029B, 58y, diag. of pat.: cancer, para. 15)

Effects on relatives

Patients and relatives reported that their everyday life changed for the better since being connected to the PDCC and that this also had an impact on relatives.

“The children always know that I will come home again and that I will feel better. And my husband also knows that I’m in good hands and that I can discuss everything there if something´s wrong with me, and that they’re also very flexible about the medication and work together with my doctors in a great way. So in everyday life that also gives US a lot of quality, yes”. (1020, 37y, diag.: cancer, para. 27)

Conversations with staff and/or being treated by therapists themselves also had an effect on relatives.

“For me, it was first of all a psychological support, because I had just no idea what this means, this cancer and what we have to expect. (…) I understood what condition my husband was in. And even though I was there the whole time, I still felt it was a relief, because I saw that, yes, my husband was receiving good care, which we couldn’t have received at home”. (1031B, 52y, diag. of pat.: cancer, para. 37)

Relatives noticed relief from the PDCC in their everyday life.

“And it also relieves ME, because so these miserable debates about what to do now and how and why and whether she should really still take her medication, these issues are then taken away from me”. (1046B, 52y, diag. of pat.: cancer, para. 43)