Background
Methods
Design and population
Issues concerning the investigation of unbearable suffering
Measurement instrument: the State-of-Suffering V
Analysis
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 |
Results
Explicit request | No explicit request | p-value* | |
---|---|---|---|
n = 17 % (n) | n = 47 % (n) | ||
Age (mean(standard deviation) | 71.9(10.2) | 69.3(12.5) | 0.437 |
Male | 59(10) | 45(21) | 0.400 |
Partner status: single | 53(9) | 68(32) | 0.265 |
Education | 0.043 | ||
- Higher | 35(6) | 13(6) | |
- Middle or lower | 65(11) | 87(41) | |
Religious†
| 63(10) | 62(29) | 0.955 |
Advance euthanasia directive | 77(13) | 9(4) | <.001 |
Type of cancer | 0.738 | ||
- Lung | 35(6) | 30(14) | |
- Colorectal | 24(4) | 15(7) | |
- Hematologic | 6(1) | 11(5) | |
- Urologic | 12(2) | 9(4) | |
- Breast | 0(0) | 9(4) | |
- Other | 24(4) | 28(13) |
Symptom present %(n)* | Symptom unbearable | ||||
---|---|---|---|---|---|
EAS request (n = 17) %(n) | No EAS request (n = 43) %(n) | P-value | All patients (n = 60) % (n)* | ||
Domain I: Medical symptoms | |||||
Weakness | 93 (56) | 71 (12) | 51 (22) | 0.249 | 57 (34) |
General discomfort | 80 (48) | 35 (6) | 37 (16) | 0.995 | 37 (22) |
Tiredness | 87 (52) | 47 (8) | 30 (13) | 0.243 | 35 (21) |
Pain | 72 (43) | 29 (5) | 23 (10) | 0.743 | 25 (15) |
Loss of appetite | 62 (37) | 18 (3) | 28 (12) | 0.520 | 25 (15) |
Not sleeping well | 47 (28) | 29 (5) | 23 (10) | 0.743 | 25 (15) |
Changed appearance | 78 (47) | 18 (3) | 23 (10) | 0.740 | 22 (13) |
Vomiting | 27 (16) | 24 (4) | 19 (8) | 0.726 | 20 (12) |
Shortness of breath | 59 (35) | 24 (4) | 16 (7) | 0.712 | 19 (11) |
Impaired co-ordination | 57 (34) | 12 (2) | 21 (9) | 0.713 | 18 (11) |
Loss of concentration | 40 (24) | 12 (2) | 19 (8) | 0.711 | 17 (10) |
Memory loss | 43 (26) | 12 (2) | 16 (7) | 0.995 | 15 (9) |
Incomprehensible speech | 32 (19) | 18 (3) | 14 (6) | 0.704 | 15 (9) |
Nausea | 28 (17) | 12 (2) | 14 (6) | 0.725 | 13 (8) |
Smelling unpleasant | 35 (21) | 18 (3) | 12(5) | 0.676 | 13 (8) |
Impaired hearing | 33 (20) | 12 (2) | 14 (6) | 0.996 | 13 (8) |
Thirst | 45 (27) | 18 (3) | 9 (4) | 0.399 | 12 (7) |
Feeling tensed | 44 (26) | 24 (4) | 7 (3) | 0.090 | 12 (7) |
Impaired mental clarity | 42 (25) | 12 (2) | 12 (5) | 0.995 | 12 (7) |
Swallow food impaired | 35 (21) | 12 (2) | 12 (5) | 0.995 | 12 (7) |
Feeling depressed | 34 (20) | 6 (1) | 14 (6) | 0.661 | 12 (7) |
Constipation | 30 (18) | 18 (3) | 9 (4) | 0.393 | 12 (7) |
Dizziness | 27 (16) | 0 (0) | 16 (7) | 0.175 | 12 (7) |
Hiccups | 22 (13) | 18 (3) | 7 (3) | 0.338 | 10 (6) |
Intestinal cramps | 22 (13) | 18 (3) | 5 (2) | 0.132 | 8 (5) |
Impaired sight | 42 (25) | 12 (2) | 5 (2) | 0.317 | 7 (4) |
Itch | 32 (19) | 12 (2) | 5 (2) | 0.317 | 7 (4) |
Feeling anxious | 27 (16) | 6 (1) | 7 (3) | 0.997 | 7 (4) |
Swallowing fluid impaired | 23 (14) | 12 (2) | 5 (2) | 0.317 | 7 (4) |
Diarrhea | 20 (12) | 12 (2) | 5 (2) | 0.317 | 7 (4) |
Incontinence of feces | 8 (5) | 6 (1) | 7 (3) | 0.997 | 7 (4) |
Coughing | 38 (23) | 6 (1) | 5 (2) | 0.997 | 5 (3) |
Pressure ulcers | 8 (5) | 12 (2) | 0 (0) | 0.996 | 3 (2) |
Comprehension of speech impaired | 7 (4) | 0 (0) | 5 (2) | 0.998 | 3 (2) |
Paralyzed limbs | 5 (3) | 0 (0) | 2 (1) | 0.999 | 2 (1) |
Skin metastasis | 3 (2) | 0 (0) | 2 (1) | 0.999 | 2 (1) |
Incontinence of urine | 10 (6) | 0 (0) | 0 (0) | 1.00 | 0 (0) |
Symptom present | Symptom unbearable | ||||
---|---|---|---|---|---|
EAS request | No EAS request | p-value** | All patients | ||
%(n) | (n = 17) %(n) | (n = 43) %(n) | (n = 60) %(n) | ||
Domain II: Loss of function
| |||||
Impaired routine daily activities | 83 (50) | 53 (9) | 56 (24) | 0.995 | 55 (33) |
Impaired leisure activities | 82 (49) | 65 (11) | 44 (19) | 0.252 | 50 (30) |
Help needed with housekeeping | 71 (42) | 65 (11) | 33 (14) | 0.040** | 42 (25) |
Bedridden | 56 (33) | 29 (5) | 33 (14) | 0.996 | 32 (19) |
Help needed with self-care | 60 (36) | 35 (6) | 16 (7) | 0,192 | 22 (13) |
Impaired working capacity | 17 (10) | 6 (1) | 14 (6) | 0.661 | 12 (7) |
Impaired sexuality | 14 (8) | 0 (0) | 7 (3) | 0.551 | 5 (3) |
Domain III: Personal aspects
| |||||
Feeling dependent on others | 80 (48) | 47 (8) | 44 (19) | 0.995 | 45 (27) |
Not able to do things you consider important | 63 (36) | 35 (6) | 42 (18) | 0.773 | 42 (24) |
Trouble accepting the present situation | 60 (36) | 41 (7) | 30 (13) | 0.545 | 33 (20) |
Loss of control over your own life | 30 (18) | 18 (3) | 30 (13) | 0.518 | 27 (16) |
Negative thoughts or worrying | 32 (19) | 6 (1) | 19 (8) | 0.423 | 15 (9) |
Feeling a nuisance to others | 38 (23) | 24 (4) | 9 (4) | 0.206 | 13 (8) |
Hopelessness | 28 (17) | 24 (4) | 9 (4) | 0.206 | 13 (8) |
Feeling not any longer being the same person | 28 (17) | 0 (0) | 14 (6) | 0.170 | 10 (6) |
Feelings of worthlessness | 22 (13) | 12 (2) | 9 (4) | 0.995 | 10 (6) |
Feeling lonely (intrapersonal) | 20 (12) | 6 (1) | 16 (7) | 0.420 | 10 (6) |
Experienced little happiness with family/friends | 22 (13) | 12 (2) | 7 (3) | 0.616 | 8 (5) |
Feeling of no longer being important to others | 18 (11) | 12 (2) | 7 (3) | 0.616 | 8 (5) |
Feeling tired of life | 17 (10) | 12 (2) | 7 (3) | 0.996 | 9 (5) |
Not satisfied with own self | 12 (7) | 6 (1) | 7 (3) | 0.995 | 7 (4) |
Feelings of guilt | 12 (7) | 6 (1) | 5 (2) | 0.490 | 5 (3) |
Lived a life with little purpose | 8 (5) | 6 (1) | 2 (1) | 0.997 | 3 (2) |
Experienced little success in life | 10 (6) | 0 (0) | 2 (1) | 0.236 | 2 (1) |
Domain IV: Environment
| |||||
Relatives consider your suffering too severe | 33 (19) | 24 (4) | 12 (5) | 0..995 | 16 (9) |
Practical loneliness (isolation, no one present for you) | 15 (9) | 12 (2) | 12 (5) | 0.995 | 12 (7) |
Insufficient availability of care | 12 (7) | 12 (2) | 7 (3) | 0.616 | 8 (5) |
Unsatisfactory social contacts | 8 (5) | 6 (1) | 2 (1) | 0.491 | 3 (2) |
Insufficient support (family, relatives) | 5 (3) | 0 (0) | 2 (1) | 0.490 | 2 (1) |
Shame | 2 (1) | 0 (0) | 2 (1) | 0.490 | 2 (1) |
Domain V: Nature and prognosis of disease
| |||||
Fear of future suffering | 40 (24) | 24 (4) | 14 (6) | 0.453 | 17 (10) |
Fear of future failing strength to bear suffering | 25 (15) | 6 (1) | 12 (5) | 0.662 | 10 (6) |
Explicit request (n = 17) | No explicit request (n = 43) | ||||
---|---|---|---|---|---|
Category of suffering | Patients in whom the category of suffering was present % (n) | Number in which the category of suffering occurred per patient* Mean (SD) | Patients in whom the category of suffering was present % (n) | Number in which the category of suffering occurred per patient* Mean (SD) | p-value of t-test for means |
Physical suffering | 76 (13) | 3.0 (2.3) | 72 (31) | 2.8 (2.7) | 0.752 |
Loss of meaning | 88 (15) | 2.6 (2.0) | 65 (28) | 2.4 (2.8) | 0.843 |
Loss of autonomy | 76 (13) | 1.9 (1.9) | 49 (21) | 1.6 (1.1) | 0.571 |
Loss of dignity | 35 (6) | 0.8 (1.9) | 42 (18) | 1.6 (2.0) | 0.847 |
Experience to be a burden to others | 41 (7) | 0.5 (0.7) | 21 (9) | 0.3 (0.5) | 0.168 |
Loss of sexual role | 0 (0) | 0.0 (0.0) | 5 (2) | 0.05 (0.2) | 0.374 |
Fear of future suffering | 18 (3) | 0.2 (0.4) | 14 (6) | 0.3 (0.7) | 0.644 |
Anxiety | 6 (1) | 0.1 (0.2) | 19 (8) | 0.3 (0.8) | 0.078 |
Death anxiety | 6 (1) | 0.1 (0.5) | 0 (0) | 0.0 (0.0 | 0.332 |
Depressive thoughts | 6 (1) | 0.1 (0.2) | 7 (3) | 0.1 (0.3) | 0.881 |
Worrying | 6 (1) | 0.1 (0.2) | 19 (8) | 0.2 (0.5) | 0.087 |
Feeling tensed | 6 (1) | 0.1 (0.2) | 7 (3) | 0.1 (0.3) | 0.881 |
Hopelessness | 6 (1) | 0.1 (0.2) | 7 (3) | 0.1 (0.3) | 0.881 |
Pointlessness | 6 (1) | 0.2 (1.0) | 5 (2) | 0.1 (0.5) | 0.548 |
Gender, age, tumor, euthanasia directive | End of life | Additional information provided by GP |
---|---|---|
Female, 76, colon, (+) | Euthanasia | Euthanasia in hospice by the GP; the patient did not want to continue living after witnessing death of 26 others. |
Female, 76, eye tumor, (+) | Euthanasia | Died in hospice; the GP performed euthanasia. |
Male, 76, M. Kahler, (+) | Euthanasia | The GP performed euthanasia at home when patient became exhausted after development of pneumonia. The GP stated: “the wish of the patient was provided”. |
Female, 55, colon, (+) | Euthanasia | Euthanasia performed in hospice in other town. |
Male, 85, colon , (+) | Physician assisted suicide | Died at home, ingestion of barbiturates. |
Female, 71, lung, (+) | Terminal sedation | The euthanasia procedure had been initiated, all compulsory criteria were confirmed present, the final step towards EAS as yet was not set. The patient was terminal, became drowsy, and changed her mind, expressing to a visiting physician in out of regular hours care (during holidays) the wish to continue living, and not to perform EAS. One day later, after deliberation, terminal sedation was initiated. Then the family demanded euthanasia. The GP of the patient considered to perform euthanasia. The consulting physician opposed euthanasia, considering absent noticeable suffering. The patient died without signs of suffering. The family remained dissatisfied. |
Male, 69, mesothelioma | Terminal sedation | Died at home. |
Male, 44, renal, (+) | Terminal sedation | Died at home. |
Male, 84, lung, (+) | Natural death | No mention of persisting request; died at home |
Female, 80, Grawitz, (+) | Natural death | A former nun who requested euthanasia when suffering increased. The euthanasia procedure was initiated and all compulsory criteria were assessed to be present. Ultimately the patient decided on religious grounds not to continue the path of euthanasia and died at home. |
Female, 79, esophagus, (+) | Natural death | No mention of persisting request; died at home. |
Male, 78, lung, (+) | Natural death | No mention of persisting request; died in hospice cared for by the GP. |
Female,78, colon | Natural death | No mention of persisting request; died in hospice cared for by the GP. |
Male, 74, adenocarcinoma | Natural death | No mention of persisting request; died at home. |
Male, 72, lung, (+) | Natural death | No mention of persisting request; died at home. |
Female, 68, lung, (+) | Natural death | No mention of persisting request; died in hospice cared for by the GP. |
Male, 66, lung | Natural death | No mention of persisting request; died at home. |