Title: A qualitative investigation of the roles and perspectives of older patients with advanced cancer and their caregivers in managing pain in the home

Background: Closs et al. states “Factors such as poorer knowledge about taking analgesia, reluctance to communicate with medical staff, poorer performance status, and being more likely to live alone suggest that older patients may require greater support in the management of their cancer pain than younger patients.” We also know that even when most effective pain treatment is known and available, older patients are more reticent than younger patients to use opioids due to misconceptions about tolerance, addiction, side effects and beliefs about inevitability of pain with (advancing) cancer.

Design and Participants: Qualitative descriptive design with semi-structured interview format of patient-caregiver dyads; 18 patients over 65yo with advanced cancer being cared for at home, and 15 caregivers were interviewed separately. Interview data was analyzed via an inductive thematic approach. Sample size was arrived at by thematic saturation.

Results: Two main themes resulted from patient and caregiver interviews: communicating the pain, finding a solution for the pain. There was a role evolution associated with both themes where patients and caregivers had to adjust to more active roles if patient functional status or cognition declined (which could cause relationship friction). Subthemes within communicating the pain were adopting roles in pain measurement, identifying, and describing the pain, revealing and concealing the pain, monitoring for pain. The subthemes within finding a solution for pain were navigating roles in pain control, implementing pain control strategies, dealing with side effects, believing in pain control. Within implementing pain control strategies, pharmacological and non-pharmacological strategies with listed. Patients often preferred to “wait and see” when breakthrough pain occurred, but caregivers were more likely to encourage action with pharmacologic approach.

Commentary: I selected this article to better understand some of the contradictory (and older) references¹ cited in our OTPM reading regarding older patients and pain management. I am working with providers in the clinical setting with differing emphasis on opioid education (tolerance, stigma, medication interaction); I have concerns about how this could detract from patients’ and caregiver overall comfort.

In this study patients often conceal pain and prefer independent management from caregivers for as long as possible (independence as a coping strategy). Since they (patients and caregivers) believe pain is inevitable and cannot be fully controlled, there becomes an “acceptance” of some pain. Thus the goal shifts to reducing pain to a tolerable level while minimizing side effects. The interaction with providers was not examined in this study (limitation). I have concerns as to whether providers were having iterative conversations to dispel misconceptions over time.

This article lends further descriptive support to the complex themes involved with managing older patients’ cancer pain. The thematic results discussed are only a sub-set of a larger study² about perspectives of older patients’ pain. I would have preferred to have the authors discuss the interaction of the themes between the two studies rather than just sub-sets because the topic is so multifaceted. See below theme figures from this study (figure 1) and from the larger study² (figure 2).

Bottom Line: Older patients and caregivers need tailored foundational education in pain management and iterative support for dispelling misconceptions as needs evolve. PC IDT can facilitate improved communication in patient-caregiver dyads when needed.

References:

1. Closs SJ, Chatwin J, Bennett MI. Cancer pain management at home (II): does age influence attitudes towards pain and analgesia?.Support Care Cancer. 2009;17(7):781-786. doi:10.1007/s00520-008-0548-4
2. McPherson CJ, Hadjistavropoulos T, Lobchuk MM, Kilgour KN. Cancer-related pain in older adults receiving palliative care: patient and family caregiver perspectives on the experience of pain.Pain Res Manag. 2013;18(6):293-300. doi:10.1155/2013/439594

Source:  McPherson CJ, Hadjistavropoulos T, Devereaux A, Lobchuk MM. A qualitative investigation of the roles and perspectives of older patients with advanced cancer and their family caregivers in managing pain in the home. BMC Palliat Care. 2014;13:39. Published 2014 Aug 8. doi:10.1186/1472-684X-13-39