Unfortunately you know many patients don’t return to the quality of life they previously enjoyed and so I think the families have to try to put themselves in the place of the patient. Were they enjoying life beforehand and will they enjoy life to the same or a lesser extent afterwards. Relatives are often selfish because they obviously often put their views first. It is important to say what the patient would want, not what they want. If he was awake to talk to me now, what do you think he would want? And especially life and death decisions are difficult as many families don’t want their loved one to die. Some accept that their time has come but the ones who don’t want to let go are often acting in their interests rather than the patients.

I have been through it. I know what it is like. And especially when you are talking about stopping treatment and withdrawing active life sustaining measures. You explain that there comes a point where it becomes clear that recovery isn’t going to happen but we have the technology to maintain life for weeks, if not months. If the final outcome is still the same, whether it is quality or quantity of life, we may need to shift strategy to keeping the patient comfortable rather than putting them through unnecessary pain just in the hope, the forlorn hope perhaps, of them getting better.

I think my mother came to the realisation when my father was deteriorating and dying. She always had hope so even though he was there for a long time, he was always improving, suddenly deteriorating, improving, suddenly deteriorating, improving. There was always the possibility that he was going to get out of the ICU and it was only in the last four or five days that it become very obvious to my mother that my father had had enough. And she came to that conclusion that he was suffering.

And was it something you discussed with each other, or had you discussed the situation as a family that if’?

No we didn’t. I left it to my mother. I explained what was going on but she could see that he was better or worse and intuitively worked it out. After five weeks the relatives, not just my mother but people in general, get to understand Intensive Care and they know when things are getting better or worse. Until the last few days where it was clear that my poor father had had enough.

And this is a decision you made together or was it one that you discussed with the doctors, or because you knew what was going on’?

I took the initiative. He was deteriorating and they offered the option of adding in further support treatments. I discussed this with my mother, and I let her take the lead. I explained what the situation was, and that the odds of him recovering were poor. I was sure they would put him on new drugs and machines if we pushed for it though, in my view, I thought he wasn’t going to make it. And she said no, he needs to be allowed to die. She could see it.

My father was 83 years old at the time. He had been losing weight and was becoming anaemic. He was being seen at the hospital by a gastroenterologist who eventually picked up a large mass in his abdomen. They initiallly thought it was an aneurysm but scans revealed it to be a large kidney tumour. He was booked for an elective operation to remove the kidney which went well and he was electively booked to come to Intensive Care postoperatively.

He did well over the first night but then he developed a pneumothorax, which is unusual for the type of operation he had. They put a chest drain in to re-inflate the lung but that set him back and he needed to go back onto the ventilator. He was doing well but the following night some bowel poked its way through a surgical drain site in his abdomen. This again is a very unusual complication which was discovered around midnight. So they had to take him back to theatre in the middle of the night for yet another operation.

Thus he had two weird complications, a collapsed lung from an abdominal operation and then the bowel poking through a drain site. And again that set him back. After that he got a chest infection, deteriorated, then started improving again. Over the next potentially five weeks, just as he was getting better from one complication then a new problem would beset him and he would spiral downwards again. For the last two or three weeks, he was in Intensive Care for five weeks in total, he was getting a lot of abdominal pain and distension. And eventually his abdomen became very distended and he was getting very weak indeed. His condition carried on deteriorating and he was in a lot of pain. You could see he was just losing strength and tiring. My mother had been doing a daily vigil from morning to night, and she realised he was fading away. My father then had a dignified withdrawal of life-prolonging care, where he was just kept comfortable, with my mother, myself and my brother alone in the room with him. He just passed away peacefully after fighting for five weeks.

It has mainly reinforced a lot of what I believed beforehand. Perhaps I delude myself but I like to think that I am good at communicating and, therefore, even before this happened I would spend a lot of time with relatives because I appreciated that they are the ones who are awake and worry whereas the patient is often asleep and not worrying. And often when the patient recovers there is a big black hole and you have to try and fill in the gaps. So I encourage some families to keep a diary so they can explain what went on in that big black hole period of the patient’s life.

But what have I learnt? It has reinforced the importance of communication, it has reinforced the need to be totally consistent so that people are saying the same things. It has reinforced the message to reinforce the message, to keep repeating the explanations and also to be totally honest. I have always been honest, so the patient’s relatives are under no illusions.

Is there any message or advice from all of this that you would give to health professionals, having been a relative?

The importance of communication. Honesty, repetition of the same message, reinforcing it, consistency. I think they want an honest consistent opinion and regular updates. That is probably the main message.

The golden rule from my perspective of Intensive Care is never to be too upbeat with families. If you promise the world and the world isn’t delivered, then they are much more likely to be bitter, angry and resentful. I think it is much better to err on the side of pessimism so that a positive outcome is a bonus rather than an expectation.

And was that how you felt when you gave information to your mother?

I reassured her when he was doing well but warned that things can go wrong, there is a long way to go etc. It was never playing it down as just a little blip but everything will be fine. If you build up hope, there is nothing worse than that rug suddenly being pulled away. I do some medico-legal work, giving independent expert opinions and two major issues are poor communication and giving the impression that the patient is a lot better than they really are. The relatives feel aggrieved, angry and are looking for somebody to blame and so they use poor communication as a channel to focus their anger on.

Perhaps with my insight into Intensive Care it is to ensure that the wrong things weren’t being done. For example one physio didn’t like me asking politely if she would take her watch off because it is an infection risk. By definition, if you are wearing a watch you cannot be washing your hands properly as the bugs grow under the watch.

On another occasion, a nurse had rolled and turned one patient and went straight to my father without washing her hands. Again, she didn’t particularly like being asked to wash her hands first. There is a big emphasis on infection control and I think they both knew they were wrong. I tried to do it diplomatically but, at the end of the day, I don’t care about their sensitivity if my father gets an infection as a result. So I think I was being more vigilant from a medical perspective. These are relatively isolated incidents. By and large what they did was very good. My mother also picked up on the vast difference in the quality of the nurses looking after my father. She noted at the beginning of the shift that one or two would really clean everything, surface tops, equipment, etc whereas others wouldn’t clean at all. She was saying why are some people ultra-clean and others not? Again she is absolutely right.

What were your thoughts and feelings at different stages, at this point?

I think frustration. It was partly because I knew what was going on. He kept developing these complications, which to be fair, were mainly out of the blue problems that were very unusual. Knowing what was going on helped. My mother always teases me of being heartless. She knows I am compassionate but, at the same time, because I do this job day in, day out, I have to develop a certain degree of thick skinned-ness, purely to be able to cope. If you got emotionally over-involved and break up over every patient who doesn’t do well, then you would be a psychological mess. You have to develop a certain degree of resilience to cope with the job. And so because I knew what was going on I had that resilience. I remember a few times shedding a few tears privately on a few occasions but it was more out of frustration for my father. He wanted to get better and every time he was almost there, almost getting to a ward, then some new problem would set him back. My priority I suppose was to make sure that nothing that should have been done wasn’t done. So, in other words I suppose I didn’t want guilt on my mind that something went wrong that could have been avoided had I not picked it up or not said something. I think that was probably one of my main foci.

So at this point were you talking to quite a lot of relatives in the relatives’ room?

Yes. All the families are often waiting around there while the patients are being turned, rolled, washed, whatever. Or they would tell my mother they didn’t understand what was going on so, when I turned up, usually in the evening after work, she would point them in my direction and say ‘can you explain what this means?’ I suppose they were taking advantage of someone who was in the relatives’ room who had some background knowledge. But I think it just reinforced how doctors assumed they were communicating well but, from a relatives perspective, perhaps it could or should have been better.

My father was 83-year-old at the time and basically he had been losing weight and becoming anaemic. He was being seen at the hospital by a gastroenterologist who eventually picked up a large mass in his abdomen. They initially thought it was an aneurysm but scans revealed it to be a large kidney tumour. He was booked for an elective operation to remove the kidney, which went well and he was electively booked to come to Intensive Care postoperatively.