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As UK deaths continue to increase, I wanted to write about dying of respiratory failure. It won't be easy - either to write or read - but I think it is important, particularly for those who will tragically have their loved ones go through the process. #COVID19 #coronavirusuk
Last year, my 39-year-old husband, Sam, died of respiratory failure associated with rejection of his lung transplant, 8 years after his transplant. His increasing respiratory failure at home was terrifying for him and for me. We both felt helpless and afraid. #RespiratoryFailure
This was actually the worst part of the whole process, for Sam and for me. With COVID, for some people, this will be the last contact with your loved one that you have. I want to explain how from this point on, in a strange way it gets better, so perhaps you will be less afraid.
When I called an ambulance because Sam could no longer catch his breath to get out of bed, I was actually relieved, because I knew that we were going to get some help, someone to share the burden and fear. Don't feel guilty about this.
When Sam arrived in hospital, the number one priority of the doctors was making him comfortable - removing any distress. For him, a CPAP machine was very helpful and allowed him to sit up in bed, eat, talk and engage with those around him. #CPAP
Of course, I was lucky, I could sit at his bedside as much as I wanted and have all the conversations I wanted with him in that time., as could friends & family. In the case of COVID, try to have some of those conversations before the person is hospitalised - they are crucial.
As Sam's lungs continued to deteriorate, it became evident that although the CPAP machine was prolonging his life, he would never actually recover. After careful discussion, and with his consent, the doctors placed him onto a palliative care pathway. #PalliativeCare
Palliative care doctors are amazing - day in, day out, they deal with patients who are dying. There would be no-one better to talk you through things, comfort you & hold your hand if you were alone in hospital. I have no idea how they do it, they are unrecognised heroes.
Palliative care means that the doctors will do everything to make you comfortable, but are accepting that they probably cannot save your life. They will medicate you and provide breathing support where appropriate, so that you are in no distress. #PalliativeCare
The drugs, typically morphine and anti-anxiety drugs, help make you feel better, but also help physically calm and stabilise your breathing. You feel less panicked and you feel much more comfortable. They helped Sam enormously. #PalliativeCare
However, as Sam deteriorated further, he became uncomfortable just being conscious - breathing was again too much effort. With his consent, they medicated him further so he was unconscious. He began to look peaceful & sleepy. After this point he did not speak to me again.
What palliative care doctors try to do at this point is ease your body into shutting down as gently and peacefully as possible. If you have ever watched anyone die, at its 'best' it is like watching them 'go to sleep' - hence the saying. This is what the doctors try to achieve.
After some time to check Sam was stable, and that there were no further signs of improvement, the doctors discussed removing CPAP breathing support. Because I was at the bedside, I was able to give consent for this, but their decision-making was spot-on - I would trust them 100%.
As breathing support was removed, the doctors and nursing staff monitored him carefully to check he was in no additional distress. He was drifting peacefully on a cloud of medication, breathing calmly, just as if he was gently going to sleep.
Shortly afterwards, Sam's breathing slowed down, then stopped and he passed away. Someone was with him at all times. I was lucky that I could hold him. And then he was gone.
Those last days were not painful or horrible or frantic. They were mostly calm and peaceful. They were also deeply sad - nothing can take that away. But at all stages, Sam was treated with dignity, respect and made as comfortable as possible.
I wanted to share this because for COVID, many won't have the privilege of seeing it. I want people to know this is how it goes, and to trust the doctors. And I hope it gives some comfort to help people remember their loved one as they were in life - at their very best.
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