Table 5 Personal descriptions of unbearable suffering by patients with high scores (score 4 or 5) on the SOS-V in the ultimate interview

General discomfort:

You just feel miserable, it feels like a sort of flue, you don’t fancy doing anything, you only want to lie in bed

Tired:

I hardly can do anything, it is nearly impossible to explain it in words, I never imagined a person could be so tired

Weakness:

My right leg is to weakened, it is not safe to stand and so for weeks I lie in my bed all the time and only come out for the latrine chair

Not sleeping well:

There is the noise at night on the streets, ambulances passing by, and this screaming neighbor woman, who keeps the whole neighborhood awake

Pain:

I have pain all day, it occupies my mind, there is little distraction

Loss of appetite:

I can hardly any more enjoy the taste of food, I long for the flavor of a fine stew

Thirst:

My mouth is dry, I need to drink, but this makes me nauseous

Smelling unpleasant:

I hate this urine smell

Changed appearance:

I used to be vain, now I have become so thin, I find it ugly looking at my neck

Impaired mental clarity:

I think about something, and then it’s gone, I find that stupid, for instance when I am one my way to fetch something

Concentration loss:

My mind loses its way, I find this unpleasant

Memory loss:

I used to remember all by mind, because I am illiterate

Feel tense:

I try to control it, for the children

Feel depressed:

This depressed mood in itself is unpleasant; at the same time it grows, because my daughter is doing less well

Feel anxious:

I feel afraid for what will come and worry about how things will go on for my wife

Shortness of breath:

Even with only slight activity I have a sort of hyperventilation, which makes me anxious

Coughing:

When in public, than this phlegm comes out in my handkerchief, it’s very annoying

Obstruction to swallow food:

I need to feed myself to prevent becoming even more weakened, but the passage of food is deranged

Obstruction to swallow fluid:

I swallow, but it doesn’t pass, it makes me retch

Nausea

I am nauseous continuously, I feel completely fed up with it

Vomiting:

When I sit at the table, it suddenly comes up and I need to run for the bathroom

Constipation:

It hurts and is strenuous

Diarrhea:

You are dining out in a hotel and then you continuously need to go to the toilet

Intestinal cramps:

These cramps are painful, it is very unpleasant

Incontinence of urine:

X (no high scores in ultimate interview)

Incontinence of feces:

It is filthy

Hiccups:

It comes sudden and unexpected, it makes me feel uncivilized and ashamed

Pressure ulcers:

It is annoying

Itch:

You keep on scratching

Skin metastasis:

In my neck, after radiotherapy it turned yellow, with an unpleasant look, it smells

Paralyzed limbs:

I can’t do anything, my left leg is paralyzed and my arm is forceless

Impaired coordination:

These unpredictable cramps and shaking of an arm or a leg, I cannot stop it

Incomprehensible speech:

I cannot communicate by telephone, people don’t understand what I am saying

Impaired comprehension of speech:

It makes me feel stupid

Dizziness:

Sometimes it is frightening, one time it happened when my alarm-button was out of reach and it took a whole long time before anybody entered and took notice

Impaired sight:

It annoys me so much, it is caused by the medication

Impaired hearing:

If some people talk at the same time I cannot differentiate what is being said

Impaired working capacity:

I am already counted out in society

Impaired in routine daily activities:

I am not the crying type, but this week I suddenly started crying

Impaired leisure activities:

I used to go out, make bus trips, I miss it, but absolutely can’t do it anymore. And I can’t any more receive people at my home, I am to exhausted

Need help with housekeeping:

Being young and not capable to function independently, it feels so unnatural

Need help with self-care:

I don’t want these young maidens of the home care service, it makes me feel ashamed

Pedridden:

More and more you are drawn to that bed, it makes you realize you are deteriorating

Restricted sexual functioning:

Widower: I feel rejected by my present partner, there is no intimacy, it is so cold

Not satisfied with own self:

I just left my wife, she had done nothing wrong, life than takes a course, leaving impossible to restore the situation

Lived a life with little purpose:

With my first wife everything was fine, the last years I miss love and tenderness

Experienced little success in life:

I would have liked to be at a somewhat higher level in society, for instance I would have liked to study, I would do it differently if I could do it again

Little happiness with family/close ones:

I would have preferred things to be different, I haven’t seen my children for 18 years

Trouble accepting situation:

I can no longer play Chopin, or make a drawing

Negative thoughts or worrying:

I would have liked to do things differently, at night it appears in my dreams

Feelings of guilt:

I feel guilt I wanted to divorce from my wife the other year, she is the one who makes I am still living now, she does everything for me

Feel worthless:

There is no more appreciation, people talk about you and not with you

Feel lonely:

One has cancer, it is not contagious, but people pass by less frequently

Feel hopeless:

This is not what I want

No longer feel the same person:

Is this the same body? Yet I have to manage with it, which causes me trouble

Feel tired of life:

I prefer it to be over as soon as possible, I used to be very active and independent and now I am totally passive and dependant

Feel dependant of others:

Ones individuality is lost, one has no more privacy

Feeling loss of control of life:

Tears in the eyes, gives no answer

Feeling a nuisance to others:

In relation to being so dependant I now easily tend to think “Oh, just leave it”

Feel unimportant to others:

My daughter, she is very sick and I can’t do anything for her

Impossible to do important things:

I used to daily visit my wife in a nursing-home, I can’t do it any longer

Not supported sufficiently by close ones:

The physical support is O.K., but there is emotional shortage

Lonely (important people absent):

I have one son, he does not visit me

Feelings of shame:

I have these outburst directed at my own person, which I find alarming, than this tic of my jaw appears and I wonder whether I can appear this way in church

Relatives consider your suffering severe:

It makes it difficult to start a conversation

Unsatisfactory contact with close ones:

They don’t keep stand up to their promises, for instance my daughter promises to visit me next week, I look forward to see her and then she shows up 1,5 years later

Insufficient availability of care:

I find the home care miserable

Fear of future suffering:

I feel short of breath, I am afraid to suffocate

Fear losing strength to bear the suffering:

To die, would it be painful?

Personal additions of missing aspects:

The hospice refused me last week, they considered me too good and advised a nursing home