A total of 14 patients met the inclusion criteria, including 5 women (36%) and 9 men (64%). The mean age was 60 years (range 45–89 years) with a mean Karnofsky index of 52% (range 20–70%), indicating that the individuals needed extensive support and frequent medical attention. The Karnofsky performance status scale (KPS) was used to rate patient functional status. The KPS ranges from 0 to 100, with 0 signifying death and 100 indicating perfect health [
7]. All respondents suffered from advanced cancer, most commonly breast cancer (
n = 3, 21%) and pancreatic cancer (
n = 3, 21%), followed by colon cancer (
n = 2, 14%). Other diseases included tonsillar cancer, leiomyosarcoma, lung cancer, ovarian cancer, and gastric neuroendocrine tumor at
n = 1 (7%) each. All respondents were interviewed on the day of admission or transfer to the PCU. For four patients, relatives were present during the interview, two patients had already been admitted one time prior to the current admission and all other patients were admitted to the PCU for the first time. An overview of all participants is provided in Table
2.
Table 2Profile of the study participants
P01 | Breast cancer | 45 | 4 | 20 | f |
P02 | Tonsillar cancer | 50 | 3 | 50 | m |
P03 | Leiomyosarcoma | 79 | 3 | 50 | f |
P04 | Lung cancer | 68 | 3 | 50 | m |
P05 | Colorectal cancer | 81 | 2 | 60 | m |
P06 | Ovarian cancer | 90 | 3 | 50 | f |
P07 | Pancreatic cancer | 89 | 2 | 60 | m |
P08 | Breast cancer | 53 | 2 | 50 | f |
P09 | Gastric neuroendocrine tumor | 74 | 2 | 60 | m |
P10 | Pancreatic cancer | 75 | 2 | 60 | m |
P11 | Meningioma | 49 | 1 | 70 | m |
P12 | Breast cancer | 81 | 4 | 50 | f |
P13 | Colorectal cancer | 47 | 2 | 60 | m |
P14 | Pancreatic cancer | 55 | 4 | 40 | m |
An analysis of the transcripts revealed the following four themes that are presented as a narrative using patient quotations to explore each theme in depth: characterization of the personality, important activities, social bonding, and present and future concerns regarding the patient’s illness. The interviews were marked with P x (patient number “x”) or P + x (caregiver of patient number “x”) and are presented in detail later.
Qualitative findings
Initial reaction
A significant portion of the patients appeared irritated when asked the question “what should I know about you as a person to help me take the best care of you that I can?” Approximately half of respondents answered right away but the other half hesitated. Of the patients two reacted nonverbally with physical gestures, a shrug of the shoulders and simultaneous shaking of the head, followed by a negative or non-answer (P02, P04), two other patients listened to the question until the end, then nodded without any further reaction. For example, patient 10 replied, “you can ask anything.” (P10) while patient 11 responded, “please” (P11). In these cases, the question was repeated. These patients did not seem to understand it as a question at first, but more as an introduction to personal questions that would subsequently be asked. In four cases other persons responded with a counterquestion. The husband of patient 1 asked, “from a medical point of view?” (P + 01) while patient 12 asked, “as a human being?” (P12). After the clarification, “generally speaking about you as a person”, both patients were able to answer. Patient 7 replied, “yes, what should I say?” (P07) but continued to speak afterwards. Patient 13 also replied, “yes, what should I say?” (P13), whereupon the roommate interrupted, saying he could talk about his hobbies or preferences. The patient then responded in kind. In two cases (P + 01, P + 04), the question was partly answered by relatives, as patients and their family members or loved ones were free to decide whether to be present during the conversation. The relatives responded with answers to the questions before the patients themselves, and as such, these relatives’ answers were also included in the analysis. During the conversation with two patients (P06, P14), the question led to a long break in the conversation. This silence was not interrupted, and respondents began to speak after a period of time.
Theme 1: characterization of one’s own personality
Respondents initially discussed personal information focused on their basic needs, such as food (“I eat everything”, P09) and sleeping (“I need silence for sleeping”, P05 and “I sleep poorly. I am active at night”, P13).
Patients also provided adjectives about themselves in an apparently honest manner; these included generally positive attributes as well as sensitive characteristics. Descriptions such as “happy, positive person” (P + 01), “a lot of compassion” (P06), “easy” (P09) and “good person” (P12) were mentioned. Patient 10 said that he had been “very active” and “travelled a lot” (P10) and patient 6 stated that she was “socially very involved” (P06); however, people also provided more sensitive information, such as “yes, I can really jangle everyone’s nerves” (P13). Patient 5 indicated a need for rest and calm. The wife of patient 4 added after his answer “his anxiety disorder is already known, that is not due to the disease now. He has always been scared” (P + 04).
Feedback from those accompanying the patient to the PCU often led to the divulging of additional information either by relatives who supplemented patient answers or from the patients themselves. The partner of patient 1 added, “she was always there for us, encouraged us and […] she was a kindergarten teacher! All children loved her!” (P + 01). Patient 6 used the narration of an episode from her youth regarding feedback from her examiners in the context of her training as a nurse to add personal details, “after 6 weeks of school we always had to work for 2 months half a day on the wards. Afterwards, there was to be an assessment. But with my complexes, I feared an annihilating judgement, I had diarrhea, but there was no getting out and then the judgment was: ‘the sunshine of the department’!” [patient started to cry] (P06); however, patient 8 responded by saying, “you know much better what I need.” (P08).
Theme 2: important activities
The patients also talked about professions and leisure activities, providing additional perspectives. As mentioned, patient 1 was a kindergarten teacher. Patient 9 reported that he had worked as a truck driver, and patient 13 explained his night time activity by mentioning former jobs as a warehouse worker, deliveryman and supplier of a bakery, and night waiter at a bar. Patient 6, who provided a long, fluid, and coherent account of her origins, life path, and current situation, stated that her job as a nurse was central to her life. “I have been a widow for 40 years and have done my job with love—I would do it again if I was born again” (P06). She came back to this several times, as in a report on her youth: “I could only learn a profession that didn’t cost anything. I did not know then that it was the profession [for me]. But it was” (P06).
Hobbies were also reported, such as working in the garden (P07), crafts, fishing and reading fishing magazines (P09), traveling and walking (P10), and reading and going to the opera, theater, and concerts (P06). These personal aspects would have otherwise been unknown to the hospital team.
Theme 3: social bonding
Participants frequently mentioned their family and friends in describing their own characteristics. Patient 10 stated, “yes I am a family person. I have two grown children, four grandchildren.” (P10), while patient 6 reported having a “loving son, who cares enormously, almost too much for his life. Additionally, I have good friends who visit me” (P06) and went on to mention her seven siblings, and that she was a “daddy’s girl” but also appreciated her mother a great deal. She also added how she is currently cared for in the nursing home and mentioned an appreciation for her social network there. Patient 12 started to speak, “My daughter …” (P12), then started to cry and said nothing else. Of the patients two referred to existing social bonds with their treatment team. Patient 7 emphasized his daughter-in-law, who worked in the hospital and was well-known in the unit, while patient 3 responded, “during the last visit I did an advance directive with Prof. (senior physician on the ward)” (P03) and indicated that the patient was already known on the unit.
Theme 4: present and future concerns regarding the patient’s illness
Patients mentioned physical and psychosocial complaints several times, included as items relating to symptom burden. Common symptoms mentioned were pain (P07, P06, P10), fatigue and weight loss (P09), and constipation (P06). Patients also brought up issues that were not obvious at first glance. Patients 6 and 9 reported increasingly poor eyesight. Patients 6 and 14 spoke of reduced hearing and its consequences, “I often do not know if I express and say everything correctly. It is a dilemma. And then it may be that you talk at cross purposes” (P14). Patient 6 provided information on her inner experience, “so far, I come to terms with the disease well. Only a few weeks, maybe 2 months ago, the deterioration started. Maybe longer […] and so it slowly went downhill. […] It’s a fight” (P06). Patient 9 said, “being tired all the time bothers me […]. Aside from that I cannot believe that I am ill—I feel nothing.” (P09). Wishes concerning their future stay in the PCU as well as thoughts concerning the imminence of death were also expressed during several interviews. Patient 7 stated, “I have no special wishes. Yes, except the pain that should be under control. And otherwise—yes I have a garden and I think you have to use it and that’s why I do not want to stay here for too long” (P07). Patient 6 more specifically addressed approaching death, “It’s a nice feeling to be safe and I wish I could die fast and—as far as I can—(have the possibility to) say goodbye. I do not want life-prolonging measures, but, if possible, a relief” (P06). Patient 9 also mentioned the topic of dying, “sometimes I hope, hopefully I’ll be dead soon.” (P09), but in the next sentence turned to a discussion of his hobbies and physical complaints. Interviewees also shared ambivalence and occasionally provided in-depth answers. Some patients, however, did not answer or hardly answered the question (P02, P04) at all.