RecruitingOBSERVATIONAL

Intensive Care Decision-making, Survival and Dying Well

This study aims to understand the experiences of people who have been in intensive care. Researchers want to know how these past experiences and people's end-of-life wishes affect their decisions about having intensive care again, especially when faced with different chances of survival. They are particularly interested in understanding what it might be like to die while receiving intensive care, and how the possibility of long-term health changes after critical illness affects these choices. The study involves filling out a questionnaire and taking part in an interview, and will help doctors understand how to make better decisions with patients about intensive care treatment.

At a glance

Status

Recruiting

Sponsor

University of Manchester

Enrolment target

Start

02 Oct 2023

Estimated completion

31 Dec 2025

Critical Illness

What is this study about?

This research is looking into how people who have been through intensive care feel about their experience and how this might shape their future healthcare decisions. With more and more older people needing intensive care, sometimes with serious health conditions that mean their chances of a full recovery are lower, it's becoming really important to understand what makes intensive care an acceptable choice for patients.

Even though someone in intensive care might look like they're asleep or unconscious, many patients who recover remember being very scared or distressed. They recall pain, frightening dreams, difficulties speaking, and a general feeling of helplessness. This study considers that if survivors remember such difficult things, then people who unfortunately don't recover might also have very distressing experiences right up to the end of their lives. Therefore, doctors need to weigh up the potential benefits of intensive care against the possibility of a difficult or distressing experience, especially if the chances of survival are low.

The study hopes to find out what level of survival chance would make someone who has already experienced intensive care willing to go through it again. It also considers how the possibility of lasting health problems or a reduced quality of life after a critical illness might influence these decisions. By gathering these personal stories and opinions, the research aims to help healthcare professionals understand what truly matters to patients when making difficult choices about intensive care, ensuring care is both effective and compassionate.

Key takeaways

This study explores intensive care survivors' experiences.
It aims to understand how past experiences influence future care decisions.
Researchers want to know what level of survival chance makes intensive care acceptable.
Participation involves a questionnaire and an interview.
Your input could help improve intensive care decisions for others.
You can withdraw from the study at any time.

Who may be eligible?

To take part in this study, you need to be at least 18 years old and have previously spent time in an intensive care or critical care unit.

You should also be willing to openly talk about your intensive care experience, what you'd want for your end-of-life care, and how different chances of survival or potential long-term health changes might influence your decision to accept intensive care again. You'll need to be able to meet in person or have access to a device (computer, tablet, or phone) with video and a steady internet connection for a Zoom conversation.

You won't be able to join if you're under 18, if your stay in intensive care was planned (for example, after a routine operation), if you can't give your consent to take part, or if there's a significant language barrier that can't be overcome.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

Are you 18 years old or older?
Have you previously been a patient in an intensive care unit (ICU)?
Are you willing to discuss your intensive care experience and end-of-life wishes?
Can you meet in person or connect via Zoom for an interview?
Was your intensive care admission unplanned (not after a routine operation)?
Can you provide consent to participate in the study?

Answer every question to see your result.

What does participation involve?

If you decide to take part in this study, you will first be asked to fill out a questionnaire. After that, you will have a one-on-one interview with a researcher. This interview can happen either in person at a location that suits you, or online via Zoom from the comfort of your own home. The study is planned to run for two years in total, but your individual involvement will be for a shorter period, covering the questionnaire and the interview.

Potential risks and benefits

Participating in this study gives you an opportunity to share your valuable experiences, which could help improve how future intensive care decisions are made for other patients. You might find discussing past intensive care experiences emotionally challenging, so support will be offered if needed. You have the right to withdraw from the study at any time, for any reason, without it affecting your current or future medical care.

Locations (1)

Some site locations are approximate. We're improving this — please verify with the trial team before travelling.

University of Manchester
Verified postcode
Manchester, United Kingdom· Recruiting

Common questions

What is 'critical illness'?

Critical illness refers to very serious health conditions that need urgent medical attention and often intensive care to help someone recover.

What is an 'ICU survivor'?

An ICU survivor is someone who has been treated in an Intensive Care Unit (ICU) for a serious illness and has since recovered and left the unit.

How will my personal information be kept private?

The researchers will protect your personal information carefully. Your identity will not be shared, and your responses will be kept confidential.

What if I feel uncomfortable during the interview?

You can take a break or stop the interview at any time if you feel uncomfortable. Your well-being is the top priority.

Will taking part affect my medical care?

No, taking part in this study is completely voluntary and will not affect any medical care you receive now or in the future.

How to find out more

Thomas M Donaldson, MB/BChir

thomas.donaldson-2@postgrad.manchester.ac.uk 07737298024 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.