“You’ve got to decide whether that’s worth it” – How can healthcare services better support older people and their families deciding whether or not to start potentially life-extending treatments?

Research question: How can healthcare services better support older people and their families deciding whether or not to start potentially life-extending treatments? Background: Helping patients to make decisions about starting medical treatments is fundamental across medicine. People tend to prefer to be involved in, or make treatment decisions themselves, rather than leave them to a doctor. Informed consent and shared decision-making frameworks emphasise weighing-up of potential treatment benefits and burdens. This is critical for older adults, who may have different priorities from younger people, and for whom the balance can tilt due to comorbidities, frailty, and diminished treatment efficacy. Meanwhile, psychological and relational factors influence decision making. Patients can struggle to say 'no' to treatments like dialysis or chemotherapy, even if they are unlikely to experience acceptable benefits and burdens. Consequently, patients may undergo treatments misaligned with their values and preferences, at great personal and system cost. Aim: To enhance services supporting older people to decide whether to initiate potentially life-extending treatments, by: Examining how and explaining why preferences for treatments, outcomes and decisional control evolve with time, disease progression, and treatment Quantifying by how much treatments must be expected to enhance quality of life or survival to be considered acceptable in different groups Exploring the reasons why some individuals start treatments that are unlikely to deliver an acceptable balance of benefits and burdens Developing a novel model explaining how older people decide whether to start potentially life-extending treatments, including: how weighed-up and emotional decisions are amalgamated how patients and family members integrate their preferences how individuals' preferences relate to the treatments they start Timelines: Five-year study reporting in 2030. A three-year cohort will capture actual treatments initiated. Methods: Mixed methods, beginning with decisions surrounding dialysis, then exploring treatments for cancer and in healthy older age. I will work with a diverse group of patient/family-member advisors including a patient co-investigator to develop study materials, refine experimental design, interpret data, and support participants. Work package 1 develops the survey and experimental designs. Work package 2 is UNPACK2 - a cohort study recruiting people aged 75+ years with advanced chronic kidney disease or a failing kidney transplant, and their family members. Six-monthly choice-experiments and explanatory qualitative interviews will explore how changing preferences and circumstances influence treatment decisions. Work package 3 uses exploratory qualitative interviews to compare decision-making amongst people with kidney disease and others aged 75+ with cancer, or living healthily into older age. I will use meta-ethnography to synthesise study findings with what is already known about how healthcare decisions are made. Impact and dissemination: The findings from this proposal will inform development of decision-support tools and healthcare interventions that align treatment choices with patient values, reducing unnecessary burdens on patients and healthcare systems. Outputs will include at least eight peer-reviewed publications, presentations at international conferences, and public engagement initiatives, including an arts-based participatory project. I will share findings with patient charities, professional bodies, and policymakers responsible for designing and commissioning healthcare, including implementation of voluntary dying.