Helena Rodi1, Karen Detering2,3, Marcus Sellars2,4, Ashley Macleod2, Julia Todd2, Sonia Fullerton5, Amy Waller6, Linda Nolte2. 1. Advance Care Planning Australia, Austin Health, PO Box 5555, Heidelberg, Melbourne, Victoria, 3084, Australia. helena.rodi@austin.org.au. 2. Advance Care Planning Australia, Austin Health, PO Box 5555, Heidelberg, Melbourne, Victoria, 3084, Australia. 3. Faculty of Health, Arts and Innovation, Swinburne University, Melbourne, Australia. 4. Australian Centre for Health Law Research, Queensland University of Technology, Brisbane, Queensland, Australia. 5. Department of Palliative Medicine, Peter MacCallum Cancer Centre, Melbourne, Victoria, Australia. 6. School of Medicine and Public Health, University of Newcastle, Newcastle, New South Wales, Australia.
Abstract
PURPOSE: To explore advance care planning (ACP) awareness, experiences, and preferences of people with cancer and support people of someone with cancer, in Australia. METHODS: Descriptive analysis and independent group t tests were used to examine data from a national, online cross-sectional survey. RESULTS: Of 705 respondents (440 people with cancer, 265 support people), 48.5% of participants had heard of ACP prior to the survey and 65% had discussed their values or preferences with someone. Significantly more people aged under 65 years had discussed their preferences than their older counterparts. Most (93%) discussions occurred with family or friends, but only 3.7% occurred with a health professional. A total of 33% had documented their preferences, with support people, women, and people aged under 65 years significantly more likely to have signed a legal document appointing someone to make medical decisions on their behalf. Views varied about the preferred timing of ACP and end-of-life care discussions (38.3% when cancer is incurable compared to 20% at diagnosis). Only 3.0% did not want to discuss ACP at all. Topics discussed were significantly different based on cohort, gender, age group, treatment status, and region. CONCLUSION: Despite increasing community awareness of ACP, understanding remains low amongst cancer patients and support people, who generally rely on discussions with family and friends rather than health professionals. ACP should be introduced early across multiple interactions with health professionals, discuss a broad range of ACP relevant topics, and involve the cancer patient and their support person.
PURPOSE: To explore advance care planning (ACP) awareness, experiences, and preferences of people with cancer and support people of someone with cancer, in Australia. METHODS: Descriptive analysis and independent group t tests were used to examine data from a national, online cross-sectional survey. RESULTS: Of 705 respondents (440 people with cancer, 265 support people), 48.5% of participants had heard of ACP prior to the survey and 65% had discussed their values or preferences with someone. Significantly more people aged under 65 years had discussed their preferences than their older counterparts. Most (93%) discussions occurred with family or friends, but only 3.7% occurred with a health professional. A total of 33% had documented their preferences, with support people, women, and people aged under 65 years significantly more likely to have signed a legal document appointing someone to make medical decisions on their behalf. Views varied about the preferred timing of ACP and end-of-life care discussions (38.3% when cancer is incurable compared to 20% at diagnosis). Only 3.0% did not want to discuss ACP at all. Topics discussed were significantly different based on cohort, gender, age group, treatment status, and region. CONCLUSION: Despite increasing community awareness of ACP, understanding remains low amongst cancerpatients and support people, who generally rely on discussions with family and friends rather than health professionals. ACP should be introduced early across multiple interactions with health professionals, discuss a broad range of ACP relevant topics, and involve the cancerpatient and their support person.
Entities:
Keywords:
Advance care directive; Advance care planning; Caregiver; End-of-life care; Oncology; Survey
Authors: Jamie Bryant; Marcus Sellars; Amy Waller; Karen Detering; Craig Sinclair; Rasa Ruseckaite; Ben White; Linda Nolte Journal: BMJ Support Palliat Care Date: 2021-03-03 Impact factor: 4.633