Jim

Jim’s wife Amber was hospitalised with encephalitis at age 66 and despite treatment rapidly deteriorated and became unconscious. Having known two people who made good recoveries from brain injuries, Jim never gave up hope that Amber would recover, but was concerned that she might recover only to a quality of life that she would not consider worth living. He was relieved when she died some 5 to 6 months after being admitted to hospital, without apparently recovering consciousness.

When his wife Amber was hospitalised with encephalitis aged 66 and lost consciousness shortly afterwards, Jim was confident that he knew her views and had a good sense of what she would and would not have wanted. This is because following the death of his mother in 2002 at the age of 90, Jim had trained as a peer educator on end-of-life issues with Marie Curie Cancer Care. He said he’d done so because, “I didn’t really know mother’s wishes. I did know what funeral she wanted. But I didn’t know when it came to dealing with her health issues, I had no idea.” Jim believed that people should talk more about their end-of-life wishes, and he and Amber had discussed this extensively and had written down some of their decisions. He had a note in Amber’s handwriting saying that she did not ever want to be resuscitated, so he had no hesitation in agreeing to a Do Not Attempt Resuscitation decision.

After some weeks in hospital Amber was moved to a care home. She remained dependent on artificial nutrition and hydration and oxygen 24 hours a day but Jim believed he saw small signs of improvement: “Whether that’s false hope I don’t know. But when she started making grunts and squeals as opposed to being dead silent, that was our interpretation.” Jim never gave up hope that Amber would survive, although we didn’t know to what extent, and whether Amber would have been happy to make the most of her life in that diminished state. Having known two other people who were written off but who made acceptable recoveries, he was truly uncertain as to what would be best for Amber, and asked, “when do you say ‘enough is enough’?”

When she died it was a relief, “because I had doubts that even if Amber had survived, if she didn’t recover 90% plus ‚ she was such a vibrant character that I don’t think she would have been happy.”

As a peer educator in end-of-life issues Jim said he saw his purpose as going out there, talking to people, and letting them know what they could do to support people at the end of life. He emphasised the importance of addressing these issues long before we know death is imminent, “Because we don’t know when it’s going to happen.” He wanted to see a society in which there was open discussion of these issues.

The death of his wife, Amber, several months after her injury was a relief for Jim, even though he had never given up hope.

Gender Male

So when she died, was that I mean, in one sense you knew she didn’t want to be kept alive if she had to be resuscitated. On the other hand, you hadn’t given up hope that she might recover?

Yes.

So you must have felt conflicted?

I was. Until I was told shed passed away. I’ll be quite frank. It was a relief. Because I had I had doubts that even if Amber had survived, if she couldn’t recover or if she didn’t recover 90% plus, I don’t think she would have been a happy bunny. She was such a vibrant character that I don’t think she would have been happy. And as I say, when I got the phone call to say that shed passed away, it was a relief.

Right there and then?

Yes.

Despite the fact you hadn’t given up hope?

Yes. I hadn’t given up hope until that second. Although I had reservations as to what quality of life and it’s her life, not my life.

So you would never have you mentioned earlier the court cases that people have taken to get treatment withdrawn

Yes.

You wouldn’t have started that yourself, because you hadn’t given up hope?

No.

So you wouldn’t have tried to withdraw treatment?

No.

But a natural death, out of your hands, was a relief?

Yes. It’s a very delicate balance. Between okay, did if you like I mean, don’t get me wrong, I know we knew what we wanted as a quality of life, and it was safe to say that with Amber laid there like she was, that wasn’t the quality of life she expected. But by the same token, because Amber couldn’t communicate in any shape or form, I never gave up hope because of our past experience of Bernard and Janet. They were two people who were written off. Whether it be right or wrong, I thought they were in a worse state than Amber ever was, because Amber wasn’t on a life support machine. Now that the interpretation of that might be wrong in that fact that Amber was on permanent oxygen supply and the only method of feeding and administrating medication was through the PEG. But when you’ve seen or know of two people who were written off for several months and then you see them like they are today, you keep faith.

Yeah, I can see that.

So I never gave and my friends never gave up hope that Amber would survive. Although we didn’t know to what extent, and whether Amber would have been happy to make the most of her life in that diminished state, who knows?

So the decision was taken out of your hands, she died?

Yes.

And that was the relief?

And it was a relief.

Did you feel guilty about feeling a relief?

No. Because although there were signs of improvement I knew that it would be a very long process for Amber to recover any one of the things she lost to near normality. And there was always this question that Amber was such a vibrant person, would she be happy say living being alive and only having 75% of her faculties. From the discussions we had, I don’t think she would have been. But by the same token, as we know from these two people which as I say we know in detail, they are enjoying their quality of life. Although they have these disabilities and restrictions and come what have you, but they’re enjoying they’re living with it.

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Jim never gave up hope, but it was also a relief when his wife died after a few months. He was worried that she might not recover a quality of life acceptable to her.

Gender Male

We noticed I mean, whether that’s a wrong interpretation. I mean, when you’re in that state and you’ve seen her, that all she could do is that, and then you see daylight. Whether it’s false hopes, I don’t know. Same as when she started making grunts and squeals. The fact a noise was coming out of her mouth, as opposed to being dead silent, whether our interpretation of it as a sign of improvement, who’s to say? But that was our interpretation.

And it was clearly different.

Yes, it was different to what wed had weeks of Amber just laying there. You know, and as I say, I never gave up hope until the day I was told Amber had passed away.

So when she died, was that I mean, in one sense you knew she didn’t want to be kept alive if she had to be resuscitated. On the other hand, you hadn’t given up hope that she might recover.

Yes.

So you must have felt conflicted?

I was. Until I was told shed passed away. I’ll be quite frank. It was a relief. Because I had I had doubts that even if Amber had survived, if she couldn’t recover or if she didn’t recover 90% plus, I don’t think she would have been a happy bunny. She was such a vibrant character that I don’t think she would have been happy. And as I say, when I got the phone call to say that shed passed away, it was a relief.

Right there and then?

Yes.

Despite the fact you hadn’t given up hope?

Yes. I hadn’t given up hope until that second. Although I had reservations as to what quality of life and it’s her life, not my life.

So you would never have you mentioned earlier the court cases that people have taken to get treatment withdrawn

Yes.

You wouldn’t have started that yourself, because you hadn’t given up hope?

No.

So you wouldn’t have tried to withdraw treatment?

No.

But a natural death, out of your hands, was a relief?

Yes. It’s a very delicate balance. Between okay, I mean, don’t get me wrong, I know we knew what we wanted as a quality of life, and it was safe to say that with Amber laid there like she was, that wasn’t the quality of life she expected. But by the same token, because Amber couldn’t communicate in any shape or form, I never gave up hope because of our past experience of [name] and [name]. They were two people who were written off. Whether it be right or wrong, I thought they were in a worse state than Amber ever was, because Amber wasn’t on a life support machine. Now that the interpretation of that might be wrong in that fact that Amber was on permanent oxygen supply and the only method of feeding and administrating medication was through the PEG. But when you’ve seen or know of two people who were written off for several months and then you see them like they are today, you keep faith.

Yeah, I can see that.

So I never gave and my friends never gave up hope that Amber would survive. Although we didn’t know to what extent, and whether Amber would have been happy to make the most of her life in that diminished state, who knows?

So the decision was taken out of your hands, she died.

Yes.

And that was the relief.

And it was a relief.

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Jim was relieved he did not need to make decisions because his wife died and then there was nothing I could doonly carry out her wishes as far as her funeral’

Gender Male

Some people who hope feel that when someone dies hope has been cruelly snatched away, but I’m not hearing that from you?

No, I didn’t I’ll be quite frank, when I was told Amber had passed away, it was a great relief. Although I had hope that Amber would survive, it was a great relief when I was told Amber had passed away. If you like, it had made a decision, Amber had passed away, there was nothing I could do, only carry out her wishes as far as her funeral and what she wanted to happen, etcetera. Whereas before, I would be making a lot of decisions in conjunction with the medical team or whoever.

It’s a big responsibility.

Yes. But that changed when Amber passed away. And it was I’ve got to admit, it was a relief. Although I had to sit down and think about it, I’ve got to admit, it was a relief off my shoulders. Probably because I didn’t have to make the decision.

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Jim’s wife, Amber, had always said she would not want to be resuscitated so he was happy to go along with the consultant’s decision to put DNAR on her records.

Gender Male

Even in the same practice. I mean, in hindsight, when I think about when the consultants turned round and said to me, with no discussion with me at all, we would not if the only course of action we could take was to resuscitate Amber, we won’t do it. And I thought, is this the difference between another doctor saying, well, we would resuscitate and keep her alive, irrespective, and another one having they might be swayed by this term quality of life, because as I turn round and say, at the end of the day, it is that person’s quality of life which must be the deciding factor. When do they say, as far as they’re concerned, enough is enough.

So you thought another doctor might not have made that decision?

Yes.

And did that mean you were unhappy with the decision or wanted to challenge it?

No, I didn’t challenge it, because I knew that’s what Amber wanted.

From our discussion, I knew that Amber, if the only course of action was to resuscitate her, Amber didn’t want it done. And it made I mean, when the consultant told me, as I turned round and said, that is Amber’s wishes. I didn’t have to make the decision. I knew Amber if that was the only course of Amber which could take place, Amber didn’t want to

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Jim’s wife had viral encephalitis and deteriorated rapidly over a few days in hospital.

Gender Male

The Tuesday morning I took her to a routine visit to the doctors, follow up to this Bell’s Palsy, he took one look at her, he did a couple of simple tests on her and immediately rang the hospital and said, I want Mrs [Surname] admitted to hospital. And she had got up that morning, we had breakfast together, she got in the car, I took her to the surgery. She came out of the surgery, I put her in the car, I took her to the hospital. She walked okay, she had a walking stick, only for safety more than anything, but she was fully compus mentis, she was talking.

Her speech was breaking up from time to time and she was having trouble swallowing. And she was eating the food but she wasn’t swallowing or taking it to such an extent that the next stage they were going to put her on pureed food. And she did the mobility problems got worse and again, typical, she was in a four-bedded unit and she was in the bed here, and diagonally across the room was the toilet. And one day she wanted to go to the toilet, and rang the bell, the nurses came, got the Zimmer frame. She had problems getting out of the chair. Because every day she was still getting out of bed, getting dressed in her day clothes. But this particular day, she wanted to go to the toilet while me and another friend were there. And she had trouble getting up out of the chair to hold the Zimmer frame. And she had trouble walking sort of diagonally. The Zimmer frame was going that way, but she was looking this way, as though lack of coordination, if I put it that way. I mean, the two nurses were with her and guiding her, Amber, you need so and so So and I say, so in a short space of time she went from being fit and well and having all her faculties, and then they started deteriorating. As I say, speech started breaking up, swallowing was a problem, then mobility got worse and then it just went on from there. And then as I say, she had ten days in [hospital] and then we got the phone call that she was being transferred to [other hospital]. When I went to see her in [other hospital], I found that she was in the intensive care unit. And she was in there for about ten days. And then she got transferred to the neurological ward.

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