Unobvious wounds: the suffering of hospice patients

• Published in: Internal medicine journal 2004-11, Vol.34 (11), p.604-607
• Main Authors: Terry, W., Olson, L. G.
• Format: Article
• Language: English
• Subjects: Adult; Aged; Aged, 80 and over; Biological and medical sciences; Female; General aspects; hospice; Hospice Care - methods; Hospice Care - psychology; Hospice Care - statistics & numerical data; Hospices; Humans; Male; Medical sciences; Middle Aged; narrative medicine; Pain - etiology; Pain - psychology; Pain Management; Pain Measurement - methods; Pain Measurement - psychology; palliative care; Palliative Care - psychology; Quality of Life; Stress, Psychological - psychology; Stress, Psychological - therapy; suffering; Surveys and Questionnaires
• ISSN: 1444-0903; 1445-5994
• DOI: 10.1111/j.1445-5994.2004.00676.x

Background:  The suffering of palliative care patients is ordinarily thought of in terms of symptoms, and these are identified by medical terms (pain, nausea, depression). The problematic issue of relief of patients’ pain meaning the same thing as the ‘relief of the suffering and distress of terminally ill patients’ has been raised. Aim:  The aim of this study was to estimate the frequency with which medically defined suffering matched the reported suffering of our patients. Methods:  One hundred patients admitted to a hospice were asked ‘In what way are you suffering?’ The patients’ diagnoses, their pain scores and the reasons for admission as defined by the treating clinicians were recorded. The mean age of the patients was 68 years (range 28−93 years), 92 had advanced malignant disease and 51 were women. Results:  Twenty‐four patients were unable to state the reason for hospice admission, but none had any uncertainty in identifying the nature of their own suffering. There was a weak correlation between the patient's view of their suffering and the reason for admission. The identification of pain as the cause of suffering was weakly correlated with pain scores. Some patients with pain scores of 8−10/10 did not mention pain as a cause of suffering, and others with scores of 0/10 did identify pain as the cause of suffering. Conclusion:  Asking hospice patients about suffering in a simple open‐ended way can expose a different dimension of distress, and the views of the 100 patients of this study support the statement that relief of pain and relief of suffering are not the same. (Intern Med J 2004; 34: 604−607)