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J Pain Symptom Manage. 2013 Oct;46(4):536-45. doi: 10.1016/j.jpainsymman.2012.10.280. Epub 2013 Mar 15.

A prospective study of family conferences: effects of patient presence on emotional expression and end-of-life discussions.

Author information

1
Department of Palliative Care and Rehabilitation Medicine, The University of Texas M. D. Anderson Cancer Center, Houston, Texas, USA. Electronic address: rdev@mdanderson.org.

Abstract

CONTEXT:

Limited research has taken place examining family conferences (FCs) with patients with advanced cancer and their caregivers in the palliative care setting.

OBJECTIVES:

To characterize the FCs involving cancer patients in a palliative care unit at a comprehensive cancer center and examine the effects of patient participation on emotional expression by the participants and end-of-life discussions.

METHODS:

A data collection sheet was completed immediately after 140 consecutive FCs that documented the number of participants, caregiver demographics, expressions of emotional distress, dissatisfaction with care, and the topics discussed. Patient demographics and discharge disposition also were collected.

RESULTS:

Seventy (50%) patients were female, 64 (46%) were white, and 127 (91%) had solid tumors. Median age of patients was 59 years. Patients participated in 68 of 140 FCs (49%). Primary caregivers (n = 140) were female (66%), white (49%), and the spouse/partner (59%). Patients verbalized distress frequently (73%). Primary caregivers' verbal expression of emotional distress was high (82%) but not significantly affected by patient presence (82% vs. 82%, P = 0.936). Verbal expressions of emotional distress by other family members were more common when patients were absent (87%) than when present (73%), P = 0.037. Questions concerning advance directives (21%), symptoms anticipated at death (31%), and caregiver well-being (29%) were infrequent. Patient presence was significantly associated with increased discussions regarding goals of care (P = 0.009) and decreased communication concerning prognosis (P = 0.004) and what symptoms dying patients may experience (P < 0.001).

CONCLUSION:

There was a high frequency of expression of emotional distress by patients and family members in FCs. Patient participation was significantly associated with decreased verbal emotional expression by family members but not the primary caregiver and was associated with fewer discussions regarding prognosis and what dying patients may experience.

KEYWORDS:

Palliative care; caregiver support; communication; end-of-life discussions; family conference

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