"ICU extubation and end of life"

A couple of months ago my parent in law was admitted to intensive care suddenly after a stroke. Their outcomes were extremely serious and sadly the very difficult decision was made to extubate them 6 days after their incident.

During this week, we all spent a lot of time with them in intensive care. Most of the nurses that we had were wonderful and very respectful of our privacy and what we were going through. In particular Courtney was wonderful, and I think Julie(?). It was also really nice to be able to use the private family room for us to all be together.

There were a few bits of feedback I wanted to provide:

- We had a different doctor and a different nurse every day. I believe this was due to covid but it made the experience very difficult, as there was no ‘throughline’ or person who seemed familiar with changes in my in-law's condition. Each day we found we were explaining what had happened the previous day and we didn’t feel confident that there was an accurate picture of their condition over time.

- The preparation we (the family) were given for the extubation was next to none. I think this was the biggest flaw. I understand that medical professionals are used to ‘fixing’ people not preparing them for death, and that an extubation can be really unpredictable, but that process was a huge shock and very confronting for all of us. It felt like what we were told (if they start struggling we will make them peaceful until they pass) was not what happened. For some family members the moments of their death were extremely traumatic and hard to come to terms with. We witnessed my in-law fighting and struggling for a really long time and I believe we should have been warned about this being a possible reality. 

- I understand the need for covid precautions, but every single day we made a 'list' of people who were allowed in to see them, and every single day we ran into issues going in and out of the hospital and ICU. It was not sorted the entire time we were there and caused undue stress on family members who were denied entry to their loved one who was passing.

- We were sent a card by intensive care which was lovely, but when I emailed the bereavement service they listed I got no response twice. I still don’t know whether RPH provides any bereavement services and we weren’t given any other information, they were all out of bereavement packs on the day my in-law passed.

- I believe tissues and a working water fountain would be great in the new ICU!

Overall I am very grateful that we could spend time with my in-law in the ICU and especially to the nurses who took care of them in their most vulnerable moments. I believe more education on death and facing the taboos around it is very much needed and would make all the difference for families experiencing possibly the worst time of their lives.