Shared Decision-making on Treatment Escalation Planning (patients)
Research type
Research Study
Full title
Shared decision making on TReatment Escalation planning for Acute deterioration in the emergency Medical Setting – Patients (STREAMS-P)
IRAS ID
320271
Contact name
Stephen Brett
Contact email
Sponsor organisation
Imperial College London
Clinicaltrials.gov Identifier
https://osf.io/g369k , Open Science Framework
Duration of Study in the UK
2 years, 7 months, 3 days
Research summary
Research Summary:
Patients admitted to hospital have the potential to deteriorate and require progressively invasive intervention to prolong life. The adult UK population is aging and patients with multimorbidity are a challenging cohort to manage when attempting to predict outcomes and appropriate intervention. Expectations for decision-making around escalation of care for patients with potential to deteriorate have evolved over time. There is currently an active move to formalise documentation around contingency planning for a range of intensities of intervention in the event of deterioration and to increase the role of patient involvement in this decision making. This study will involve in-depth interviews with older patients to explore their perspectives on the role of shared decision making in treatment escalation planning in the acute medical inpatient setting. Qualitative analysis will be performed to identify themes. This research will increase our understanding of the extent to which patient involvement in decision making around treatment escalation in the UK acute medical setting is considered feasible or desirable and thereby has the potential to improve decision making in this context.
Summary of Results:
This is a study carried out in London in 2023 by Imperial College researchers. We did this study because we wanted to understand how older people think about making decisions with clinicians about planning for future ill health in hospital. A term used to describe this process is Treatment Escalation Planning (TEP), which includes decisions about Cardio Pulmonary Resuscitation (CPR). This research is important because there is uncertainty in official guidelines, the law and the popular press about how much authority patients or clinicians should have about TEP decisions. We worked with patients, carers and healthcare providers to design this research.
We interviewed 32 people. Most of the interviews took place in their homes. We worked with local GPs to recruit people with different ethnicities, ages (63-101 years) and levels of frailty so that we could try to understand a variety of perspectives. The interviews took about one hour and went into a lot of depth about people’s experiences and opinions.
Patients expected that life and death would follow a natural trajectory, rather than being determined by TEP. Life was precious and people tried to live a good life. Death was inevitable, and for some people influenced by higher religious powers, but this did not mean that people instinctively accepted limitations on treatment. Many feared some health states, such as pain, dementia or being very dependent, but people thought it was important to be stoic as they did not believe these outcomes could be altered.
People were keen to understand their health. However, most did not recognise the idea of planning for future treatments. Interventions such as breathing support on a ventilator or CPR to restart a heart were unfamiliar. Many patients did not realise that CPR happens after a person has died, or that physical functioning can be permanently reduced following attempts at life-saving treatment. Reasoning around views on TEP was complex, variable, and often inconclusive. Contemplating thresholds for intolerable outcomes or trade-offs between quality and quantity of life was unfamiliar. Instinctively, people preferred to live in the moment and felt that decisions could not be made until a health event happened.
People wished to have control over their medical treatments, arguing that they are the ones who live with the consequences. They felt a responsibility to seek good healthcare. Many expected that clinicians would supply information and advice, following which patients should make the final decision. Nonetheless, patients valued medical opinion and some accepted that clinicians might override their decision. Family input and support was important to many.
These ideas about TEP and who should have authority over healthcare decisions were described in a context of patients’ views about clinicians and the healthcare system. Most considered clinicians to be knowledgeable authority figures. However, many also described bad experiences with healthcare workers and recalled mistakes or poor communication. Patients viewed the health system as chaotic and under pressure. They appreciated universal care, recognised staff efforts, criticised patients who waste time, and were willing to forgive errors – but overall worried that the system cannot reliably meet needs. Some were afraid that TEP was a signal not to try to help older patients, in an effort to conserve NHS resources.
Overall, this research suggests that patients are keen to be the final arbiters on their healthcare decisions but are unfamiliar with the concept and detail of Treatment Escalation Planning. We propose:
- Wider public discourse about dying and planning for illness to increase knowledge, understanding and receptiveness to TEP
- Reflection by individual clinicians and healthcare leaders on older patients’ negative healthcare experiences
- Ongoing deliberation by policy makers and in law about patients’ expected role in TEPThis research was part of a programme of research exploring Shared Decision-Making between older patients and clinicians about Treatment Escalation Planning, comprising a systematic review of previous research on this topic, interviews with clinicians, interviews with patients and an ethnography.
REC name
South Central - Hampshire A Research Ethics Committee
REC reference
22/SC/0476
Date of REC Opinion
28 Dec 2022
REC opinion
Favourable Opinion