In this week’s blog I want to start sharing some insights about end-of-life care in Intensive Care.
First of all, I do want to point out that I personally believe that every end-of-life situation in Intensive Care is unique, depending on varying factors such as clinical picture, cultural/religious background and the Family dynamics. Furthermore, I also think that every end-of-life situation needs to be put in context of the culture within the Intensive Care Unit and how proactive an Intensive Care Unit is working towards Quality-of-end-of-Life. For example, Units who implemented End-of-Life pathways might have a higher satisfaction rate amongst their staff and Families, when it comes to end-of-Life situations.
I am sure we all have seen health professionals burning out, if the end-of-Life situation is not handled well and we have also seen Families that were either grateful of how the end-of-Life situation of their loved one has been handled- or on the other side of the spectrum- they have been absolutely devastated about circumstances or the communication process or the timing of the end-of Life situation.
I also want to point out that I believe we should start using the term “Quality of-end-of-Life”, as I believe there is Quality even at somebody’s end of Life. I take a holistic view there and I also look at the perceptions of the Family in an end-of-Life situation. From my perspective the Families perception and their views matter a lot in how to deal with end-of-Life and also how we can improve the Quality of end-of-Life in Intensive Care or outside of Intensive Care with additional and alternative services.
Overall, it is difficult to qualify what a “good death” in Intensive Care or outside of Intensive Care entails, however I also believe that we as health professionals in Intensive Care should feel tremendously privileged to be in a position to be part of a Patient’s end-of-Life. We should also feel privileged because we can help and support Families through one of their most stressful and most traumatic times in their lives. I personally get a lot of (job) satisfaction out of these situations, if the situation is handled well and if the multidisciplinary team is working together to achieve Quality of-end-of- Life. After all, not many people deal with end-of-Life situations in their day to day work.
Now, everybody who is familiar with Intensive Care and who has worked in Intensive Care for a considerable period of time has had their fair share of end- of- life experiences and situations.
In over 13 years of ICU nursing experience, I certainly have had my share of end-of-life experiences and situations and some of them were good and I felt privileged to be involved in those situations and some of those situations were outright bad. Overall, from my perspective it depends on a number of things that I mentioned before, whether the end-of-life situation is a good one or not so good one.
Having said that, one thing that I have seen over the years is the reoccurrence of some Patients approaching their end-of-Life over many weeks or many months in Intensive Care, whilst being ventilated with a Tracheostomy. From my perspective, in those situations the full force of exposure to suffering, pain and vulnerability hits home, when a Patient is slowly dying on a ventilator with Tracheostomy in Intensive Care. Everybody who has witnessed the slow death of a Patient dying in Intensive Care, will never forget the experience. I remember a number of cases vividly over the years, but the one that probably stood out most was a young lady in her mid-fifties. After a lung transplant had given her a few more years to live, she now was readmitted back to Intensive Care where she was confronted with the full force of respiratory failure and organ rejection. Over a good 12-16 week period the lady and her Family went through hell. Hardly ever sedated and fully conscious most of the time, she slowly but surely approached her end-of-Life and everybody knew it. The lady occupied a bedspace in the middle of the unit, glaring at people who passed by. In the midst of this busy 24/7 thoroughfare in Intensive Care was this lady, surrounded by her devastated Family. I vividly remember her husband, who at the beginning of her ICU journey was full of strength and always very friendly and ‘chatty’ with the staff. The longer he watched the suffering of his beloved wife he was barely able to walk with a sore back. I think he felt the full force of what him, his wife and the rest of their Family had been going through, despite of all the marvellous efforts of the ICU staff.
Quality of-end-of-Life is not a term Intensive Care Units, Health Services or even palliative services use and I believe that it is highly underrated. Shouldn’t ‘Palliative services’ be renamed to ‘Quality of-end-of-life services’? Shouldn’t we strive to provide Quality of-end-of-life, just as much as we strive to get Patients out of Intensive Care in a better condition than what they came in for? Isn’t it a privilege to provide Quality at the end of somebody’s life? I strongly believe it is. Death is part of life- and the sooner we accept and embrace it and make it part of our day to day living, the more creative and the more accepting we get of the fact that there is Quality, even at the end of our lives.
Another thing that I also observed over the years in Intensive Care is that whenever a Patient has been approaching their end of Life slowly, often on a ventilator with a Tracheostomy, circumstances are generally all but perfect. I have seen many Families asking of whether they could take their loved one home and let them approach their end of Life at home. Many surveys have shown that people would choose to die at home if the opportunity presented.
The scenario of dying at home would also create real opportunities for Hospitals and ICU’s in particular, to free up expensive resources and minimise costs. It’s a win-win situation.
What are your thoughts on this topic? What is your experience when providing end-of-Life care? Do you think that there is room for improvement inside Intensive Care or outside of Intensive Care?
Share your thoughts and leave your comments below! Have a great day!