Background: Unbearable suffering is an important issue in end-of-life decisions. However, there has been no systematic, prospective, patient-oriented research which has focused on unbearable suffering, nor is there a suitable measurement instrument. This article describes the methodological development of a quantitative instrument to measure the nature and intensity of unbearable suffering, practical aspects of its use in end-stage cancer patients in general practice, and studies content validity and psychometric properties.

BackgroundPrimary care physicians provide palliative home care. In cancer patients dying at home in the Netherlands (45% of all cancer patients) euthanasia in about one out of every seven patients indicates unbearable suffering. Symptom prevalence, relationship between intensity of symptoms and unbearable suffering, evolvement of symptoms and unbearability over time and quality of unbearable suffering were studied in end-of-life cancer patients in primary care.Methods44 general practitioners during three years recruited cancer patients estimated to die within six months. Every two months patients quantified intensity as well as unbearability of 69 symptoms with the State-of-Suffering-V (SOS-V). Also overall unbearable suffering was quantified. The five-point rating scale ranged from 1 (not at all) to 5 (hardly can be worse). For symptoms assessed to be unbearable the nature of the suffering was additionally investigated with open-ended questions. The final interviews were analyzed; for longitudinal evolvement also the pre-final interviews were analyzed. Symptom intensity scores 4 and 5 were defined to indicate high intensity. Symptom unbearability scores 4 and 5 were defined to indicate unbearable suffering. Two raters categorized the qualitative descriptions of unbearable suffering.ResultsOut of 148 requested patients 51% participated; 64 patients were followed up until death. The SOS-V was administered at least once in 60 patients (on average 30 days before death) and at least twice in 33 patients. Weakness was the most frequent unbearable symptom (57%). Pain was unbearable in 25%. Pain, loss of control over one’s life and fear of future suffering frequently were unbearable (89-92%) when symptom intensity was high. Loss of control over one’s life, vomiting and not being able to do important things frequently were unbearable (52-80%) when symptom intensity was low. Unbearable weakness significantly increased between pre-final and final interview. Physical suffering, loss of meaning, loss of autonomy, experiencing to be a burden, fear of future suffering and worrying more frequently occurred in patients suffering unbearably overall.ConclusionsWeakness was the most prevalent unbearable symptom in an end-of-life primary care cancer population. Physical suffering, loss of meaning and loss of autonomy more frequently occurred in patients who suffered unbearably overall.

BackgroundUnbearable suffering most frequently is reported in end-of-life cancer patients in primary care. However, research seldom addresses unbearable suffering. The aim of this study was to comprehensively investigate the various aspects of unbearable suffering in end-of-life cancer patients cared for in primary care.MethodsForty four general practitioners recruited end-of-life cancer patients with an estimated life expectancy of half a year or shorter. The inclusion period was three years, follow-up lasted one additional year. Practices were monitored bimonthly to identify new cases. Unbearable aspects in five domains and overall unbearable suffering were quantitatively assessed (5-point scale) through patient interviews every two months with a comprehensive instrument. Scores of 4 (serious) or 5 (hardly can be worse) were defined unbearable. The last interviews before death were analyzed. Sources providing strength to bear suffering were identified through additional open-ended questions.ResultsSeventy six out of 148 patients (51%) requested to participate consented; the attrition rate was 8%, while 8% were alive at the end of follow-up. Sixty four patients were followed up until death; in 60 patients interviews were complete. Overall unbearable suffering occurred in 28%. A mean of 18 unbearable aspects was present in patients with serious (score 4) overall unbearable suffering. Overall, half of the unbearable aspects involved the domain of traditional medical symptoms. The most frequent unbearable aspects were weakness, general discomfort, tiredness, pain, loss of appetite and not sleeping well (25%-57%). The other half of the unbearable aspects involved the domains of function, personhood, environment, and nature and prognosis of disease. The most frequent unbearable aspects were impaired activities, feeling dependent, help needed with housekeeping, not being able to do important things, trouble accepting the situation, being bedridden and loss of control (27%-55%). The combination of love and support was the most frequent source (67%) providing strength to bear suffering.ConclusionsOverall unbearable suffering occurred in one in every four end-of-life cancer patients. Half of the unbearable aspects involved medical symptoms, the other half concerned psychological, social and existential dimensions. Physicians need to comprehensively assess suffering and provide psychosocial interventions alongside physical symptom management.

BackgroundAn international discussion about whether or not to legally permit euthanasia and (or) physician assisted suicide (EAS) is ongoing. Unbearable suffering in patients may result in a request for EAS. In the Netherlands EAS is legally permitted, and unbearable suffering is one of the central compulsory criteria. The majority of EAS is performed in cancer patients in the primary care practice. In around one in every seven end-of-life cancer patients dying in the primary care setting EAS is performed. The prevalence of unbearable symptoms and overall unbearable suffering in relationship to explicit requests for EAS was studied in a cohort of end-of-life cancer patients in primary care.MethodsA prospective study in primary care cancer patients estimated to die within six months was performed. Every two months suffering was assessed with the State-of-Suffering V (SOS-V). The SOS-V is a comprehensive instrument for quantitative and qualitative assessment of unbearable suffering related to 69 physical, psychological and social symptoms in five domains.ResultsOut of 148 patients who were asked to participate 76 (51%) entered the study. The studied population were 64 patients who were followed up until death; 27% explicitly requested EAS, which was performed in 8% of the patients. The final interview per patient was analyzed; in four patients the SOS-V was missing. Unbearable symptoms were present in 94% of patients with an explicit request for EAS and in 87% of patients without an explicit request. No differences were found in the prevalence of unbearable suffering for physical, psychological, social and existential symptoms, nor for overall unbearable suffering, between patients who did or who did not explicitly request EAS.ConclusionsIn a population of end-of-life cancer patients cared for in primary care no differences in unbearable suffering were found between patients with and without explicit requests for EAS. The study raises the question whether unbearable suffering is the dominant motive to request for EAS. Most patients suffered from unbearable symptoms, indicating that the compulsory criterion of unbearable suffering may be met a priori in most end-of-life cancer patients dying at home, whether they request EAS or not.

Major depression was not a major factor in explicit requests for euthanasia in end-of-life cancer patients in primary care. Further depressed mood was not associated with explicitly requesting euthanasia in this patient group, although statistical underpower cannot be ruled out in this small sample.