Table 1 Categorization of qualitative data
Category of suffering | Indications for assigning category | Example of categorization |
|---|---|---|
Physical | Medical morbidity, the physical symptom itself, physical symptoms which result in physical experienced suffering | Pain: I have pain all day, it occupies me continuously, there is little distraction |
Loss of meaning | Loss of: identity, capacity of self-fulfillment, communication, social role, social interaction, intimacy | Impaired working capacity: I miss the contact with people. The only one left is my wife |
Loss of autonomy | Suffering acknowledged to be caused by loss of autonomous functioning and occurrence of dependency (presence itself of loss of autonomy is not sufficient for assigning) | Trouble accepting present situation: The dependency on other people |
Loss of dignity | Socially embarrassing symptoms, shame, body image concerns, not taken seriously, worthlessness | Impaired comprehension of speech: I feel stupid, I can’t come along |
Burden to others | Experience to be a burden to others | Feeling to be a burden to others: I feel troubled to ask other people for help |
Loss of sexual role | Loss of capability of sexual functioning; loss of sexual role | Restricted sexuality: my sexual life is destroyed, it is gone, not only for me, but also for my wife |
Fear of future suffering | Fear caused by awareness of possible suffering related to progress of disease | Fear to lose the strength to bear the suffering: Pain, I have fear for pain |
Anxiety | Anxiety | Not sleeping well: I have these nightmares, it wakens me up and makes me frightened |
Death anxiety | Anxiety related to awareness of the process of dying and what may come along with that, and anxiety related to the actual dying process | Fear of future suffering: I am afraid to suffocate |
Depressiveness | Suffering caused by the presence of depressive thoughts | Feel depressed: It is an annoying feeling. It is also influenced by the situation of my daughters: they are not doing well |
Worrying | Negative thoughts which cannot be turned off | Impaired coordination of movements: I am afraid to fall, I hold on to everything |
Feeling tensed | Feeling tensed in mind or body | Feel tensed: Especially in bed; each time again I feel tense and keep saying “relax” |
Hopelessness | Loss of possibility of meaning | Hopelessness: To say farewell is what makes me feel hopeless |
Pointlessness | Total loss of meaning; nothing left | General discomfort: Not being able to do a thing, just waiting for death |