Background. The aim of our study was to assess how relatives remember the dying of lung cancer patients several years after their death.
Methods. The family members of 45 non small-cell lung cancer patients who died up to 7 years after radical surgical treatment were telephoned and asked to meet the research team. Only 20 of them agreed to talk about the dying and death of their relatives; for the rest the issue was still too painful. During the meeting with 2 researchers, participants were asked to comment freely on the points of the Assessment of Dying in Lung Cancer Patients questionnaire and to score the Quality of Dying Apgar.
Results. Family members of 15 of the patients stated recognizing the dying of their loved one. They concluded this on the basis of exacerbation of symptoms, "typical" appearance, change in behaviour or particular words the patient said to them. The median score of the quality of dying was 6.5/10 (range 3-9). Lower scoring was observed for patients who died in hospital, without the family present at the moment of death and with uncontrolled symptoms. Only 5 of the relatives assessed pain and other symptom control as satisfactory. Other family members remembered pain (n = 9), dyspnoea (n = 8), delirium (n = 4) and other symptoms as disturbing the dying in a severe or moderate way. Three relatives assessed that their loved one's dying was not "dignified", mostly due to the severe physical suffering, the nursing being crucially remiss at the hospital and the patient's being alone at the moment of death. All family members were able to describe the healthcare professionals' attitudes and even repeat the statements they heard from them.
Conclusion. We have demonstrated that several years after death many of the words and the behaviour of the dying patients were still alive in their relatives' memories. The family members remember how the healthcare professionals behaved and what they said to them. While caring for dying people, we should bear in mind that the way in which we behave may either give strength to the family or destroy their peace of mind for many years.