The story behind ICUsteps' newest information sheet
We are pleased to announce the publication of this important information sheet, containing helpful information about what happens when someone might be at the end of life in an ICU, what to expect and how relatives, family and friends can support the patient and themselves.
Having a relative dying in ICU is so hard on so many different levels. For many patients, care in intensive care is due to an emergency and so it is not planned or expected. The experience can be a rollercoaster of uncertainty for relatives, who might not know if the patient will survive or die, whether to hope or to grieve. They can’t begin to prepare themselves for either - or rather, they have to comprehend the possibility of both, and inhabit that frightening and unpredictable place.
Knowing that death is going to happen is important and this is recognised in other healthcare settings as contributing to a good death - not only to action the right care and support for the patient, but also in preparing relatives for the death, which are all important to minimise trauma. But it can be so very difficult to predict a death when someone has a critical illness, and it can be a fast-moving situation, with many unknowns.
If we throw into this mix, significant public misunderstanding about what intensive care medicine is and what it can do… you can see what potential there is for upset and conflict for relatives. For example,
- Uncertainty in ICU medicine. Many people would know that doctors can’t save everyone but they might assume that they could confidently predict who will survive, who will die and when. Yet the reality is often trying treatment, living with uncertainty, seeing how the patient responds and trying to predict if survival will give a quality of life that the patient values….and this is such a rollercoaster for all involved.
- Lack of familiarity with death. We can be so protected from death now. We may not know what happens when someone dies in any circumstance, and so we may never have experienced what happens in a usual dying process. So, distress caused by normal things associated with dying can be heightened when it happens in an intensive care setting.
- Possible withdrawal of medicines, machine intervention, nutrition. These generally wouldn’t have to be faced in the same way outside an ICU. How easy it is when a dying patient naturally refuses food or drink, rather than those decisions needed to be made on their behalf in their best interests if the patient is not able to communicate what they want to happen.
- Decision making in ICU. Critically ill patients are often unable to understand their treatment options and communicate what care they want. They may not have undertaken any advance care planning. Relatives may not be familiar with how decisions are made in people’s best interests and who can make these decisions.
For many relatives, it is hard to take in information at a time of great distress and uncertainty. They can be on overload already and their potential to understand and retain information can be understandably limited. This can be even more so if people have cognitive impairment, or other additional needs as a relative, or English as an additional language. ICU staff have these difficult conversations often, even on a daily basis, and they are so skilled in it – but the potential for misunderstanding is huge.
With all these factors, you can see what a profound burden dying in ICU can be for patients and their relatives – and why information is so essential.
About this information
End of Life in Intensive Care is available on ICUsteps website and includes a PDF of the whole information sheet and a flyer to give to relatives to let them know that this information is available if they want to look at it.
We recognise this is a long information sheet, and that relatives might only want to look at some of it, or none of it, depending on what is helpful to them. We also recognise that at a time of such uncertainty, they may find it difficult to have information that encompasses dying in ICU. It is important that ICU staff assess if, and when, it is appropriate to mention this resource to them. The flyer could be put in relative waiting rooms to help raise awareness that this information is available.
This resource may be helpful for relatives after someone has died in ICU. Witnessing a death in ICU can be particularly traumatic, and it is very hard to process and make sense of what is happening in such a stressful situation – and so relatives can have many questions after the death. The information sheet also contains useful contacts so that relatives can seek support if they need it afterwards.
So many people have contributed to make this information a reality and my heartfelt thanks to them all for their expertise and time. A huge thank you to my co-authors – Dr Natalie Pattison, Dr Joe Cosgrove and Dr Kathryn Mannix. The idea for this information sheet began when Natalie, Joe and I contributed to the Faculty of Intensive Care Medicine’s Care at the End of Life guidance.
Thank you to Jeanette Foley, Dr Polly Fitch, Kirsti Meachem, Dr Victoria Metaxa and John Richardson who commented on the draft information sheet. And thank you for permission to include some text from Care and Support as the End of Life approaches in Critical Care written by Susan Armitage, Donna Barnett and the Critical Care End of Life Team from Sheffield Teaching Hospital NHS Trust.
Thank you to Peter Gibb, ICUsteps, and Rob Humphries for their care and attention in designing the information sheet and the webpage.
We hope that this information resource will help relatives at a very difficult and distressing time. And most of all, we hope that it reassures patients and relatives that moving from life sustaining treatment in ICU does not mean a withdrawal of care, and that patients will be supported and be given the right care to help them during this time.