Decision‐making in cancer care for people living with dementia

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.

Providing cancer treatment and care to people living with cancer and dementia: challenges and research-based recommendations

“…Making decisions about cancer treatments can be particularly challenging when someone also has dementia (Griffiths et al, 2020). Although cancer treatment decisions often require careful consideration (Schiphorst et al, 2016) and many patients experience difficulties understanding treatment options or prognosis (Courtier et al, 2016), dementia brings many additional complexities.…”

“…Comprehension and decision-making abilities may be affected (Zafar et al, 2009). Some people with dementia will be able to understand and make informed decisions, whereas others may require support to understand and retain information about treatment options and to make decisions, or may require other people, often family members, to do this on their behalf (Courtier et al, 2016;Witham et al, 2018;McWilliams et al, 2018a;McWilliams et al, 2018b;Griffiths et al, 2020). These difficulties are heightened if the volume and complexity of information that can be conveyed during oncology appointments is not delivered in ways that are appropriate to the communication needs and understanding of the person (McWilliams et al, 2018a;Griffiths et al, 2020;Hopkinson et al, 2020).…”

“…For example, there is little understanding of whether cancer treatments affect dementia symptoms or medication, or of why complications from some cancer treatments are more likely for people with dementia (Hopkinson et al, 2016). Amid this general absence of evidence, decisions are often made based around how well the person is likely to cope with the treatment and its side effects and consequences (Courtier et al, 2016) -for example, the likelihood of coping well with being an inpatient post-surgery, with failing to remember why a breast has been removed (Griffiths et al, 2020) or with monitoring for treatment side-effects (Courtier et al, 2016) -and the level of the person's cognitive impairment and its impact on their life expectancy (Courtier et al, 2016;McWilliams et al, 2018a). Quantity versus quality of life becomes a key consideration, with relatives or the person often particularly keen to maintain the person's current quality of life in the context of their dementia and concerned about the potential risks of cancer treatment on the person's cognitive health and well-being (Griffiths et al, 2020;McWilliams et al, 2018b).…”

“…Amid this general absence of evidence, decisions are often made based around how well the person is likely to cope with the treatment and its side effects and consequences (Courtier et al, 2016) -for example, the likelihood of coping well with being an inpatient post-surgery, with failing to remember why a breast has been removed (Griffiths et al, 2020) or with monitoring for treatment side-effects (Courtier et al, 2016) -and the level of the person's cognitive impairment and its impact on their life expectancy (Courtier et al, 2016;McWilliams et al, 2018a). Quantity versus quality of life becomes a key consideration, with relatives or the person often particularly keen to maintain the person's current quality of life in the context of their dementia and concerned about the potential risks of cancer treatment on the person's cognitive health and well-being (Griffiths et al, 2020;McWilliams et al, 2018b). Difficulties are commonly experienced in identifying the 'best' decision under amid an often complex and uncertain set of circumstances (Griffiths et al, 2020); with some relatives feeling this complex 'bigger picture' of dementia and other co-morbidities is not always sufficiently taken into account (Griffiths et al, 2020).…”

“…Quantity versus quality of life becomes a key consideration, with relatives or the person often particularly keen to maintain the person's current quality of life in the context of their dementia and concerned about the potential risks of cancer treatment on the person's cognitive health and well-being (Griffiths et al, 2020;McWilliams et al, 2018b). Difficulties are commonly experienced in identifying the 'best' decision under amid an often complex and uncertain set of circumstances (Griffiths et al, 2020); with some relatives feeling this complex 'bigger picture' of dementia and other co-morbidities is not always sufficiently taken into account (Griffiths et al, 2020).…”