Measuring pain perceptions and medication taking behavior at the end of life: a pilot study

Understanding why some patients with terminal illness are reluctant to take sufficient medication to control pain is critical to effective pain management.

As a first step toward exploring the pain medication-taking behavior of palliative care patients, this pilot study tested a survey regarding pain medication adherence, medication beliefs, and quality of life (QoL).

Convenience sample; survey.

Six patients receiving inpatient Palliative Care consultations at an academic medical center answered questions about their outpatient pain medication-taking behavior.

Medication Adherence Report Scale (MARS), Beliefs about Medications Questionnaire (BMQ), Brief Pain Inventory (BPI), closed-response items from a pain medication adherence study in terminally ill patients, the McGill Quality of Life Questionnaire (McGill), and demographic items.

The battery of questionnaires took approximately 53 minutes; five of six participants were able to complete all items. Respondents reported moderate to severe pain (mean 4.3/10 for pain on average; 7/10 for worst pain in past 24 hours), and excellent medication adherence. When asked how much relief was provided by pain therapies, respondents reported a mean 73% (range 50-100%) relief. They expressed little concern about addiction, but more concern about medication-induced nausea and constipation. Overall QoL was good (mean 6.8/10, range 5-10, higher score better), with notably high scores in existential and support domains.

Inpatients receiving palliative care consultation were able to complete interviewer-administered questionnaires regarding their pain perceptions, medications, and QoL. Further studies using these instruments are feasible and could inform shared decision making about pain management.