You mentioned you had already discussed that at some other point before he was ill?

Yes.

Had you made decisions like that or it was just a topic of conversation? Or had you had a serious discussion about it?

We had in the past had sort of fairly serious discussions about what our wishes would be in various situations. And if there was brain damage, if it was just physical. If one died. If the other, or if one was disabled. Different sorts of things. And I think at one particular point I think it was actually triggered by a family bereavement, you know, I think sometimes these things bring issues to a head don’t they? But yes we have had a serious discussion over intended wishes.

Had you written anything down?

No. Although we do have wills and have had for a long time. Ever since we had a mortgage [laughs].

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 wouldve wanted my son back in any state, after all what hed done, whatever medically, but Im then selfish, would my son wanted to come back not being able to speak, not being able to walk, not being able to see? And all this was told to us under the medical team, that this could happen to him. Hes been unconscious for ten days and the brain is a complex piece of equipment, and at the time I said, Anything, just I want him. But you look at life so differently and that wouldve been very selfish because I dont think, in just me and our son, that my son would want to have lived that type of life. So you must not be selfish.

Youve gotta make the distinctiveness between that person has gone and yes you are very sad but to have them back on a condition that could leave them not the person that they actually were originally i.e. my son was completely normal other than having this dreadful, you know, his body functions everything was, you know, working. But after this happened, we were told that parts of the body werent working, would he have wanted that? No. Not at all, not to be in a wheelchair for the rest of his life, not to be able to see, not to be, when hes done all those things before. Thats not to say that I would, somebody having a child like that from birth, thats a totally different aspect, totally different.

So again its the selfishness of what I want and what my son wouldve wanted.

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.

So he [husband] was in the ward and he developed pneumonia and went into Intensive Care?

Yes.

How long was he in Intensive Care when he went to the hospital?

The first time?

Yes.

He was in Intensive Care for a week exactly. Yes.

Then in High Dependency for…?

Six days and then he was back in Intensive Care three days. Two days actually. Yes.

So when he went into the general ward the first time, he went into the general ward after having tests?

Yes.

So you knew he was going in?

Yes.

Did you know at that stage what would be happening next?

No. We knew from the results of the scan that he was very, very, very poorly and after our first day there, at the hospital, the doctor there did explain to us exactly what was going on. And he was very, very, very honest with us. You see that is one of the good things about this particular hospital is that they have got a – they believe that honesty is the best policy and that it is better to be very, very open about everything then it is to sort of hide things and so I knew.

You appreciated that?

Exactly. What was going on.

And on the day that he passed away. Were you there at the time. Or did you receive a phone call?

I was there. Well he had been deteriorating all day. His oxygen levels were dropping and they had given him everything, everything really and the doctor explained that they reach a point of what they call futility when there isn’t anything else they can do really.

The doctors explained that to you or the nurses?

Yes, they did. Both actually, doctors and the nurses. And then it was about 3 oclock in the morning. I did actually stay over that night and the nurse came in and said, ‘he has reached that stage and asked whether I liked for them to carry on sort of trying anything. But really by then I had seen him being prodded about, you know, needles being stuck in every bit of him, and I just thought it is better to let him go really. So they stopped the drugs that were keeping his blood pressure up and he died at 5.15 that morning.