Shared decision making with older people on treatment escalation planning for acute deterioration in the emergency medical setting: a UK-based qualitative study of patient perspectives (STREAMS-P)

Background

Shared decision making (SDM) in treatment escalation planning (TEP) involves patients and clinicians determining together a contingency for future health deterioration. Patients’ role in health-care decision making is subject to ongoing debate. This study aimed to understand the perspectives of older patients in the UK on SDM in TEP for the acute hospital setting.

Methods

In this qualitative study, we recruited older adults with varying levels of frailty and diverse ethnicity via primary care in an Inner London borough. We excluded individuals who did not have the capacity to make TEP decisions, could not be interviewed in English, or whose main chronic clinical problem was cancer or an established severe single organ failure. We used purposive stratified sampling to capture a variety of age, frailty, and ethnicity. We conducted semistructured interviews from March 31 to Dec 19, 2023, and audiorecorded them. We then performed a reflexive thematic analysis.

Findings

We conducted 27 interviews with 32 participants. Participants were aged 63–101 years, clinical frailty ranged from none to severe and was distributed across age groups, and 19 participants were female and 13 participants were male. We identified four themes from the interviews: (1) Focusing on a Natural Life Lived Well, which reflects participants’ ideas around expected life and death trajectory; (2) Making Sense of an Unfamiliar Medical Narrative, where detailed planning for medical intervention was not expected; (3) My Body, My Decision, in which there was emphasis on retaining control over health-care decisions; and (4) Expert, Imperfect Doctors in an Essential, Imperfect System, in which the context of decision making involving health-care professionals in a stretched UK health service was considered.

Interpretation

Patients did not immediately perceive the relevance of detailed planning for future treatment, but nonetheless showed determination to be final arbiters on health-care decisions. Viewed in the context of increasing emphasis on patient autonomy, future steps include public education on possibilities and limitations for intensive medical intervention, clinician reflection on approaches to TEP conversations and policy-level deliberation to define expectations for patient involvement in TEP decisions.

Funding

HCA International and NIHR Imperial Biomedical Research Centre.