Purpose. Lung cancer has a high impact on both patients and relatives. Previous studies looked into treatment goals patients have before starting a treatment. However, studies on relatives’ perceptions of treatment at the end of life are scarce. Therefore, we studied the perspectives of relatives in hindsight on the achievement of treatment goals and the choice to start treatment for metastatic lung cancer of their loved one.
Methods. We conducted a semi-structured telephone interview study in six hospitals across the Netherlands, one academic and five non-academic hospitals between February 2017 and November 2019. We included 118 relatives of deceased patients diagnosed with metastatic lung cancer who started a systemic treatment and who completed a questionnaire on their treatment goals before start of the treatment and when treatment was finished. We asked the relatives about the achievement of patients’ treatment goals and relatives’ satisfaction with the choice to start treatment.
Results. Relatives reported the goals ‘quality of life’, ‘decrease tumour size’ and ‘life prolongation’ as achieved in 21%, 37% and 41% respectively. Most of the relatives (78%) were satisfied with the choice to start a treatment. Also, when none of the goals were achieved, 70% of the relatives were satisfied. About one in two relatives who were satisfied with the patient’s choice did mention negative aspects of the treatment choice, such as that the treatment did not work, that there were side effects or that it would not have been the relatives choice. This was four in five for relatives who were not satisfied. Most mentioned positive aspects were that they tried everything and that it was the patient’s choice.
Conclusion. Relatives reported patients’ treatment goals as not achieved in a majority of cases. They were, however, in majority of the cases satisfied about the treatment choice. Being satisfied does not provide a full picture of their experience with the treatment decision as a majority mentions negative aspects of this decision. At the time of making the treatment decision it is important to manage expectations about chance of success and possible side effects of the treatment.