End‐of‐life priorities of older adults with terminal illness and caregivers: A qualitative consultation

Abstract

Background As older adults approach the end‐of‐life (EOL), many are faced with complex decisions including whether to use medical advances to prolong life. Limited information exists on the priorities of older adults at the EOL. Objective This study aimed to explore patient and family experiences and identify factors deemed important to quality EOL care. Method A descriptive qualitative study involving three focus group discussions (n = 18) and six in‐depth interviews with older adults suffering from either a terminal condition and/or caregivers were conducted in NSW, Australia. Data were analysed thematically. Results Seven major themes were identified as follows: quality as a priority, sense of control, life on hold, need for health system support, being at home, talking about death and competent and caring health professionals. An underpinning priority throughout the seven themes was knowing and adhering to patient's wishes. Conclusion Our study highlights that to better adhere to EOL patient's wishes a reorganization of care needs is required. The readiness of the health system to cater for this expectation is questionable as real choices may not be available in acute hospital settings. With an ageing population, a reorganization of care which influences the way we manage terminal patients is required.

Outcomes of deprescribing interventions in older patients with life‐limiting illness and limited life expectancy: A systematic review

“…The measure that is as a high priority by older patients with terminal illness, their caregivers and health care professionals is QOL . In our study QOL was reported by 2 RCTs and the effect of deprescribing on QOL was found to be inconsistent.…”

Identifying End-of-Life Preferences Among Chinese Patients With Cancer Using the Heart to Heart Card Game

“…11 In recent years, Western researches have focused on patient's values and priorities at EOL and not just on the preferences for life-sustaining treatment. [12][13][14] Since talking about death is a taboo in China, most family members and health-care providers usually avoid discussing EOL preferences to protect the feelings of the patients. 15,16 Thus, patients rarely express their EOL preferences.…”

Concerns and potential improvements in end-of-life care from the perspectives of older patients and informal caregivers: a scoping review

“…In terms of study design, nine studies exclusively reported in-depth interviews [ 13 – 21 ], two combined focus groups with interviews [ 22 , 23 ], one combined interviews with medical records data [ 24 ], and five conducted surveys with open-ended questions analysed using qualitative methods [ 25 – 29 ]. Studies included patients and/or relatives from single or combined settings in family homes (n= 6) [ 14 – 17 , 23 , 25 ], residential aged care (n=4) [ 16 , 22 , 24 , 26 ], hospice (n=4) [ 13 , 18 , 19 , 26 ] and hospital settings (n=3) [ 16 , 24 , 26 ].…”

“…Patients and their family/caregivers frequently mentioned the need for clinicians to alert families about the patient’s final hours [ 28 ], and be open and honest about the patient’s prognosis, with a focus on ensuring the likelihood of death was communicated clearly, without using jargon, euphemisms like ‘not doing well’, or speaking in general terms like ‘needing hospice’ [ 13 , 15 – 17 , 19 , 22 , 23 , 25 , 26 ]. Family members felt that straightforward and realistic information from health professionals was more valuable than encouragement to keep up hope, which caused confusion [ 19 , 26 ].…”