Understanding the cultural environment of the outpatient care setting for patients with dementia receiving cancer treatment: A qualitative study

Abstract

Introduction People with dementia have poorer cancer outcomes than those without dementia, and experience inequalities in access to, and quality of, care. Outpatient environments, where radiotherapy, chemotherapy and immunotherapy cancer treatments typically take place, have largely been excluded from research. This study was conducted to understand provision of treatment and support and experiences of care for people with dementia undergoing cancer treatment in the outpatient setting. Materials and Methods Using observation, interviews and document analysis, data were collected to scrutinize the cultural environment of ambulatory care, comprising the physical fabric of the care setting; interactions, behaviours and perceptions of those in the care setting; and the organizational, clinical and interactional processes involved in care delivery. The study was conducted in the outpatient oncology departments of two large teaching hospitals in England between January 2019 and July 2021. Results Data were gathered from a wide range of sources, including 15 h of observation, and interviews with patients ( n = 2), caregivers ( n = 7) and staff ( n = 20). Evidence from this study suggests that the cultural environment of the outpatient care setting reflects and supports the standardized processing of people for cancer treatment. Dementia introduces a wider set of care requirements not catered for by this standardized treatment model and associated processes. Data showed that the needs of patients with dementia could be addressed most effectively when individualized care, as opposed to standardized care, was offered. Conclusion There is work to be done in outpatient cancer services to ensure responsiveness to individual patient need. This could be achieved by having an established way (or ways) of eliciting needs, preferences and expectations, a belief that a person's needs and expectations are legitimate and that effort should be made to address them, with the ability to accommodate these needs and expectations. Patient or Public Contribution Patients and caregivers were involved in the study design and development of study materials including the interview topic guide. They also assisted with discussion and clarification of study findings.

Cancer care for people with dementia: Literature overview and recommendations for practice and research

“…Other explanatory factors are indicated by several recent qualitative studies examining cancer care for PLWD by undertaking interviews with cancer clinicians, PLWD, and/or family carers and, in some cases, also hospitalbased ethnographic observations. 5,11,13,14,18,[82][83][84][85] These qualitative studies delineate various ways in which dementia complicates cancer treatment decision making and delivery for clinicians, patients, and family carers, although the studies are geographically restricted to the United Kingdom in all but one case.…”

“…Qualitative studies consistently highlight several interrelated challenges for oncology teams around cancer treatment decision making and administration for PLWD. 5,11,13,14,18,[82][83][84][85] Respecting patient autonomy, oncologists must determine whether PLWD lack capacity to give informed consent for cancer treatments and gauge the extent to which they are able and wish to be informed about and involved in treatment decision making. For PLWD, treatment decision making often also involves one or more family caregivers, who may or may not have legally appointed roles (e.g., in the United Kingdom, lasting power of attorney health and welfare; in the United States, medical power of attorney), which means clinical decision making must address multiple, sometimes conflicting, perspectives.…”

“…Furthermore, even when known about, knowledge of a patient's dementia is not consistently shared by all staff involved in scheduling and administering cancer treatments because this comorbidity is not always documented in a readily visible and reliable way in oncology patient records. 5,85 Poor identification of dementia in oncology settings was also highlighted by a recent survey of 103 UK-based cancer surgeons, in which 44.7% reported that they do not routinely ask about memory problems, and 65% indicated that they do not perform cognitive testing, in elective settings. 19 (2) Oncology staff often have limited dementia knowledge and training, including in some cases limited understanding of family carers' legal proxy decision-making powers.…”

“…19 (2) Oncology staff often have limited dementia knowledge and training, including in some cases limited understanding of family carers' legal proxy decision-making powers. 5,7,[12][13][14]18,85 Limited dementia education may mean many cancer clinicians also have limited understanding of the different types of dementia, the diverse nature of dementia symptoms, and the progressive functional impact and care needs across different stages of disease. (3) The standard length of oncology appointments is often insufficient for PLWD and their families 7 (because of, for example, communication difficulties; more complex factors to delineate and consider in treatment decision making; more uncertainty to explain and discuss concerning treatment effects and outcomes due to a limited evidence base; more people's perspectives to hear and integrate).…”

“…In addition, cancer treatment provision becomes extremely difficult, and may be viewed as unfeasible and unsafe, when PLWD do not have a supportive family carer(s) who knows them well and can accompany them to hospital appointments and assist with related care at home. 5,8,9,11,12,84,85…”