Table 3

Themes, categories and codes of suffering named by patients explicitly requesting assistance in dying

ThemesCategoriesCodes
MedicalPhysical symptomsGeneral symptoms: pain, fatigue, general malaise, feeling miserable, physical deterioration, changed appearance
Gastrointestinal symptoms: eating and drinking problems, anorexia, nausea, vomiting, loss of weight, defecation problems
Nervous and locomotor symptoms: deterioration of locomotor function, mobility and coordination; loss of balance; dizziness
Dyspnoea
Incontinence
Cognitive symptomsConfrontations with cognitive deterioration, deterioration of ready knowledge, inability to concentrate, inability to participate in conversations, slow-wittedness, loss of memory
Psychiatric symptomsLoss of emotional control, loss of emotions, insomnia, de-realisation, depersonalisation, suicidal ideation, depression, identity crisis, fear, addiction
Effects of medical treatmentSide effects of chemotherapy, radiotherapy, psycho-pharmaceuticals and morphine. Complications of operations
DeclinePhysical, cognitive and emotional
Psycho-emotionalLoss of selfLoss of the following:
  • Autonomy: independence and being in control

  • Expression of personal traits: social-mindedness, readiness to help others, being of significance, caring, pride in achievements

  • Communication style: considerate of the views of others, open

  • Specific personality descriptors: modest, honest, loyal, consistent, interested, rational, humorous, relativistic, optimistic, uncomplaining, not overly emotional

  • Favourite activities: active outdoor events and ‘enjoying life’—for example, going out for dinner, etc

Negative feelingsImpotence, bitterness, misery, emptiness, suffering, emotional pain, disappointment, sadness
Fears of future sufferingThe course of the illness and dying: getting worse, uncontrollable symptoms, a horrible death
Cognitive decline: deterioration, loss of control of the mind, loss of community, becoming insane with fear, being unable to recognise surroundings
Consequences of palliation: side effects of treatment, including morphine
Physical decline: deterioration, dullness, urinary incontinence, mechanical ventilation
Physical symptoms: nausea, pain, choking, dyspnoea
Loss of self-determination: being totally unable to do anything, loss of control, vegetative state, being bedridden.
Emotional aspects: suffering, anxiety
DependencyBeing dependent, loss of physical functions of everyday living, being bedridden
Loss of autonomyThe way others treat you: patient role, being treated as a hothouse plant, not being seen as a human being, being pressured to make decisions
Loss of self-determination: loss of direction, loss of making your own decisions, loss of independence, impaired daily functioning
Desire to control death: not wanting to experience the end stage of the disease, not wanting to suffer to the end, desire to have a say about your own dying, wanting your preferred way of dying, wanting to die with dignity, wanting no prolonged dying, desire to die at home, wishing to have some influence on the memories left behind
Being worn outNot being able to stand it anymore, demoralisation, being so tired, exhausted by the treatments, tired of fighting the illness
Socio-environmentalLoss of social significanceNot feeling significant for society or loved ones. Loss of social, occupational and family roles, status
Communicative problemsInability to participate in conversation, inability to communicate
Discontent about residential circumstances and quality of careResidential: being unable to go home, nursing home as a prospect, unsuitable living conditions
Quality of care: poor quality of professional care, disappointment in informal care
Being a burdenBeing a psychological or physical burden to the next of kin and the formal and informal caregivers
LonelinessLoss of loved ones, withdrawal, isolation, being left alone
Biographical aspectsFamily history, occupational history, autobiography, social background, bad marriage, sexual abuse, family trauma (eg, war)
ExistentialLoss of important and pleasurable activitiesBeing unable to participate
HopelessnessAbsence of any hope of improvement, absence or degrading future prospects, nature and progress of the disease, unsuccessful suicide attempts
PointlessnessLoss of joie de vivre, loss of purpose in life, loss of the will to live
Life is overBeing tired of life or weary of living, a feeling that your life is completed