Alys Wyn Griffiths1, Laura Ashley2, Rachael Kelley1, Fiona Cowdell3, Michelle Collinson4, Ellen Mason4, Amanda Farrin4, Ann Henry5,6, Hayley Inman7, Claire Surr1. 1. Centre for Dementia Research, School of Health & Community Studies, Leeds Beckett University, Leeds, UK. 2. School of Social Sciences, Leeds Beckett University, Leeds, UK. 3. Faculty of Health, Education and Life Sciences, Birmingham City University, Birmingham, UK. 4. Clinical Trials Research Unit, Institute of Clinical Trials Research, University of Leeds, Leeds, UK. 5. Clinical Oncology, Leeds Teaching Hospitals NHS Trust, Leeds, UK. 6. School of Medicine, University of Leeds, Leeds, UK. 7. Oncology Services, Bradford Teaching Hospitals NHS Foundation Trust, Bradford, UK.
Abstract
OBJECTIVE: Increasing numbers of people are expected to live with comorbid cancer and dementia. Cancer treatment decision-making for these individuals is complex, particularly for those lacking capacity, requiring support across the cancer care pathway. There is little research to inform practice in this area. This ethnographic study reports on the cancer decision-making experiences of people with cancer and dementia, their families, and healthcare staff. METHODS: Participant observations, informal conversations, semi-structured interviews, and medical note review, in two NHS trusts. Seventeen people with dementia and cancer, 22 relatives and 19 staff members participated. RESULTS: Decision-making raised complex ethical dilemmas and challenges and raised concerns for families and staff around whether correct decisions had been made. Whose decision it was and to what extent a person with dementia and cancer was able to make decisions was complex, requiring careful and ongoing consultation and close involvement of relatives. The potential impact dementia might have on treatment understanding and toleration required additional consideration by clinicians when evaluating treatment options. CONCLUSIONS: Cancer treatment decision-making for people with dementia is challenging, should be an ongoing process and has emotional impacts for the individual, relatives, and staff. Longer, flexible, and additional appointments may be required to support decision-making by people with cancer and dementia. Evidence-based decision-making guidance on how dementia impacts cancer prognosis, treatment adherence and efficacy is required.
OBJECTIVE: Increasing numbers of people are expected to live with comorbid cancer and dementia. Cancer treatment decision-making for these individuals is complex, particularly for those lacking capacity, requiring support across the cancer care pathway. There is little research to inform practice in this area. This ethnographic study reports on the cancer decision-making experiences of people with cancer and dementia, their families, and healthcare staff. METHODS:Participant observations, informal conversations, semi-structured interviews, and medical note review, in two NHS trusts. Seventeen people with dementia and cancer, 22 relatives and 19 staff members participated. RESULTS: Decision-making raised complex ethical dilemmas and challenges and raised concerns for families and staff around whether correct decisions had been made. Whose decision it was and to what extent a person with dementia and cancer was able to make decisions was complex, requiring careful and ongoing consultation and close involvement of relatives. The potential impact dementia might have on treatment understanding and toleration required additional consideration by clinicians when evaluating treatment options. CONCLUSIONS:Cancer treatment decision-making for people with dementia is challenging, should be an ongoing process and has emotional impacts for the individual, relatives, and staff. Longer, flexible, and additional appointments may be required to support decision-making by people with cancer and dementia. Evidence-based decision-making guidance on how dementia impacts cancer prognosis, treatment adherence and efficacy is required.