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Keywords:

  • quality of life;
  • attitude to death;
  • terminal care;
  • patient-centered care;
  • qualitative research

Objectives: To characterize the experience of quality of life while dying from the perspective of terminally ill men.

Design: Descriptive study involving semistructured interviews.

Setting: Patients attending clinics at two university-affiliated medical centers were interviewed in a private conference room or in their homes.

Participants: Twenty-six men identified by their physicians as having terminal heart disease or cancer. Eligible participants acknowledged that they had serious illness.

Measurements: The interview contained open-ended questions such as: “What are the most important things in your life right now?” The interview also contained closed-ended questions about symptom intensity, presence of depressed mood, and other items related to overall quality of life. The open-ended questions were tape-recorded, transcribed, and analyzed using grounded theory methods. The closed-ended questions were analyzed using descriptive statistics.

Results: Participants believed that death was near. Participants saw engaging in hobbies and other enjoyable activities as an alternative to moving into the final stage of illness, in which they saw themselves as actively dying. They admitted to occasionally ignoring prescribed diets; these actions improved their overall quality of life but worsened symptoms. New symptoms brought concerns about progression to active dying. They anticipated what their dying would be like and how it would affect others. Participants believed that their actions in the present could improve the quality of their dying and lessen the burden of their deaths on others. Many participants therefore were preparing for death by engaging in such tasks as putting their finances in order and planning their funerals, to relieve anticipated burden on loved ones.

Conclusion: To help terminally ill patients plan for the end of life, clinicians are encouraged to become familiar with their patients' experiences of living with terminal illness, to identify each patient's unique priorities, and to incorporate that information into care plans aimed at maximizing quality of life at the end of life.