The progress of awareness and acceptance of dying assessed in cancer patients and their caring relatives

Abstract

Awareness and acceptance of dying were assessed weekly by semistructured interviews in a randomized sample of 76 hospice cancer patients and caring relatives. During the final eight weeks of the study, patients' awareness showed only slight increase (about 42% fully certain) while relatives' certainty clearly progressed (from 53% to 81% certain). Depression was linked with greater awareness in relatives but not patients. Patients were more anxious if death seemed probable rather than certain or no more than possible. Acceptance usually increased, with 51% of patients and 69% of relatives becoming nearly/fully accepting. Many individuals diverged from the average progress of awareness and acceptance; 18% of patients and 24% of relatives showed fluctuating or falling acceptance. Patients' and relatives' levels of awareness were positively correlated (r = 0.46), as was acceptance (r = 0.47). Relatives accepted more if patients were over 70 years, weak, unable to concentrate or had a quality of life index (QLI) below five, but patients were more accepting if female and if the QLI was above five. Pain did not increase acceptance. Acceptance was described in terms of death's inevitability, faith and spiritual values, life's diminishing rewards, completing life, final benefits, humour, sharing, etc. Individuals often used more than one concept. Generalizing exact figures from this sample needs caution, but some patterns of progress, possible influential factors and ways of acceptance may apply widely.

Evaluating the Quality of Dying and Death

“…In a followup study to the early surveys in the United Kingdom, reports of pain were found incongruent between caregivers and actual patients. 20 In contrast, other studies found congruence between relatives and hospice patients' acceptance of death 21 and between professional caregivers and patients ratings of outcomes of palliative care. 22,23 A ground-breaking study comparing relatives' retrospective reports of terminal illness with patients and relative reports prior to death indicated only moderate reproducibility on symptoms of vomiting, dyspnea, and immobility and poor congruence on pain, anorexia, and depression.…”

“…21,51,57 These studies suggest that proxy reports of observable behaviors and characteristics are more consistent with patient reports than reports of unobservable feelings or preferences. This finding is similar to other fields in which proxy reports of functioning and activities have been compared to patient reports, observations, or performance measures.…”

Patient perspectives regarding communication about prognosis and end-of-life issues: How can it be optimised?

“…While the relationship between age and acceptance of or anxiety about death is less than robust [28,29], older participants suggested that they would be better able to accept and discuss the reality of dying than their younger counterparts as they had had a full life.…”

Detecting Attitudinal Changes about Death and Dying as a Result of End-of-Life Care Curricula for Medical Undergraduates

“…The individual items were gleaned from discussions with clinicians as well as the published lay and professional literature. [36][37][38][39][40][41] The item pool was reduced in further discussions with our own research team to eliminate redundant items. The measure assesses three domains (closure, personal control, clinical criteria).…”