"Still have never heard an explanation"

My father was admitted to hospital due to non-eating, sleeping, difficulty with breathing which he'd already been in for. He was treated again as they discovered fluid in the lungs. They drained this for few days, removed previous medication from him, re-issued new medication.

After a few days, the consultant came to us saying my father was fit to return home. Prior to leaving, I spoke with a nurse to say he still had diarrhoea, they said this would be checked. He was still discharged as he was able to walk around the ward, he was weak but determined. I made a comment he was fit enough to go home.

He was given a box of new meds to take daily, and returned home. We called the paramedics as he became weak, breathing still causing issues. 3 paramedics came out, did tests, gave him the option to stay home or go to hospital, we had been advised by paramedics there was 3-day-trial at the NHS, and advised to stay home.

Prior to this the doctor had visited and allowed him to remain at home. We were told the medication wasn’t correct for him that he had been given the previous week and told he was given too much medication to be dealing with, and it had caused a lactic acid buildup, which had affected his liver and kidneys.

He was given dialysis to try help with the kidney failure. His stomach was very swollen and breathing erratically. More tests were done on him and given fluids for the dehydration. We were told the next 72 hours would be crucial, as they are removing his old blood and filtering it to put it back in, he responded to dialysis. Due to his age it would be done slower so no shock to his body.

We were told his blood levels were still very low, but responding to dialysis. We had been told that he was very agitated, which was to be expected, and he would be on dialysis for a little longer. They told us his kidney was like a prune and advised he would be in intensive care to see if the kidney could work on their own.

He was taken off dialysis to see if the kidney worked without dialysis.  I was also having to feed my father, as his hand to mouth coordination wasn’t good . We were advised that physio would be round to help him try sit up in his chair (this I never witnessed). He seemed calmer but still delirious, and was told that he will be moving to ward 5, the diabetic ward.

He moved ward and was able to sit in the chair for 2 hours, speaking with family. He was hallucinating, was told it was a step in the right direction. He was not eating, but board in room said nutrition and fluids normal when they weren’t, I had been there lunch/dinner time to witness. We were advised that he would be in for 10-14 days if he kept improving.

He fell out of bed (his bed was not in view of nurse station/no bars up/no alarm. I noticed that he had been passing a lot of blood since the fall, I was told this had come from the kidney maybe. I was so angry at a man that was delirious, did not have a bed alarm, bars up etc or have 1-2-1 care. I was then told I probably won’t be able to speak to the doctor until the next day.

I was very concerned as I didn’t feel he was getting the attention required. I was there for 7 hours this day, he pulled off his oxygen, glucose line, socks, and constantly trying to get out of bed, not eating, unless getting help from family. He was still delirious which I understand him doing these things. I just felt if I wasn’t there to report, what would happen?

We were taken in to a family room, told the worst news, and asked to make the decision as he is no longer able to make decisions due to his delirium. We were told his body is frail and should his heart stop, resuscitating him would put him in too much pain. My mum and I discussed and made the decision not to put him through this, and confirmed we believe it would be inhuman to revive him, should his body fail. My father at this point was still not eating and we were told that he may need a feeding tube inserted as the weight was beginning to fall off. I also bought a fan up due to the heat in his room.

A needle was inserted in his stomach to remove fluids as it was very swollen and results would be back within 24/48 hours to determine if the gut was infected, if so this would be treated and may help with what was going on. At this point I felt that it really became a guessing game. We were advised that my dad had acute kidney injury, we were also advised that the fluid came back clear and was put on antibiotics to clear the infection. We were also told the kidney was failing again but no need for dialysis. He was moved to ward 8, this was one of the first days he ate, but they moved him anyway.

He then had to endure the pain/suffering, with his family around him for 37 hours, which was unbearable to watch him struggle taking his last breath.

I spoke with numerous doctors, palliative care team, to find out why they went against our wish, still have never heard an explanation as to the above. Hope one day I will!