Shared decision making
Decisions involving values and difficult personal choices
Shared decision making is particularly important when the decision to be made involves personal values or moral choices. The health professional may no longer be considered the expert because the decisions are based not just on what is medically best ( though it is important to remember that the health professional would still have to feel that the decision was medically reasonable ), but are entangled with values and difficult personal choices which are specific to individuals. This may mean that health professionals feel less able to give directive advice and the decision making is weighted more towards the patient, as the best choice is personal to them. (See ‘Different types of doctor patient relationships’ and ‘Why do people want to be involved in shared decision making?’.)
People’s values are always likely to have some effect, however small, on any decisions made. However, there are certain decisions, which people commonly find difficult to make. Such decisions span a wide range of health issues, but in the interviews we collected, they feature most strongly in decisions such as ending pregnancy; end of life care and decisions made on behalf of others. Health professionals may feel as a matter of principle that these are choices they should leave to the individual; patients may agree they are the best person to make such decisions, but sometimes they want someone to help them.
Own value-based preferences
When making decisions which involve morals and values there are certain factors which shape the choices made. People often want to be more involved if they, or the person they are deciding for, have a preferred outcome based on values or beliefs, for example religious convictions. Sometimes people instantly know which choice is right for them, but in other cases people’s idea of what they would like to happen may change during the decision making process.
One factor that affects decision making is how certain the likely outcome is. When people are able to be given a clear and definite idea about prognosis, it can be easier to make decisions about choices for the future. When it is not possible to be given that certainty, then people may find it more difficult to make decisions. The way in which this is explained to people is very important, the family below describe their experience of receiving differing opinions about their available options.
External influences
Outside influences often shape how people make their decisions. People may choose to ask friends and family to help advise and support them in making difficult decisions.
Alternatively, people may choose not to involve family members in their decisions, either because they want to maintain the responsibility or to protect them from sensitive and sometimes political issues.
If the choices made will also affect other family members, this may also guide and shape the decision.
Another external influence which affects such decisions is how people believe others will perceive them.
Making choices for others
There are times when people have to make decisions for another who is unable to decide for themselves, such as a young child, a relative who is unconscious in intensive care, or a family member with dementia. People talked about how it was important to establish what the person themselves would want or value.
In dementia it can be difficult to determine when patients are unable to still be in control of their decisions. The loss of this ability can cause distress and can be very difficult, and it impacts on whether and how decisions can be shared. While the situation was often deeply regretted, people rarely wanted decisions to be entirely taken out of their hands, and were grateful for advice.
Carefully considered motives
Sometimes people making difficult decisions involving values immediately knew what their ‘right’ choice was.
Other people felt less certain and some felt that all the options available were undesirable. People described considering their own motives carefully, and it was often clear that people took great care when making tough choices. Sometimes people also felt they were under scrutiny and had to justify their choices. The amount of time that people felt they had often influenced how they felt about the decision' those who felt rushed were often dissatisfied.
Heightened emotions
Dealing with difficult value-based issues meant that people were in a heightened emotional state and could sometimes feel offended or upset during or after consultations. Feeling confused and unsure of the best course of action is common when coming to terms with a difficult diagnosis. People described how they looked for hope in what the doctor said to them and sought ways to share the decision or seek emotional support from health workers or friends and family.
She consented to giving her mother a tracheotomy when the doctor explained that without one her mother would die. But she still felt devastated about this choosing this risky procedure.
Health professionals may feel that value-based decisions should involve the individual and may therefore offer less directive advice than they might in other circumstances. However, if they offer an opinion, it can be welcomed and appreciated.
I met a consultant last week who had a little bit of a, an examination of my tummy, and sent me for an extra scan, because they thought perhaps the baby might be slightly small.
But I met with a, a female, a registrar about two months ago and I think she was' she really went over the birth plan with me, which I found most helpful. She was expecting a baby herself so I think she kind of understood.
Right. And can you tell me a little bit more about the discussion that you had with her?
Yeah. She had a good look at the notes and said, 'You know, really, I think if I was in your shoes then I would go for a section, too'. She said just perhaps failure to progress was maybe slightly small or maybe it was a big baby, or, you know, whatever, but just for health reasons, on this occasion she said, 'I really think that, you know, that would be best for you'. So that helped tremendously.
Others were offended by the direction, especially when their values seemed to conflict with the health professionals’. Conflict in values sometimes caused people to be proactive to get the action they required.
People’s values are always likely to have some effect, however small, on any decisions made. However, there are certain decisions, which people commonly find difficult to make. Such decisions span a wide range of health issues, but in the interviews we collected, they feature most strongly in decisions such as ending pregnancy; end of life care and decisions made on behalf of others. Health professionals may feel as a matter of principle that these are choices they should leave to the individual; patients may agree they are the best person to make such decisions, but sometimes they want someone to help them.
She describes the day she discussed whether to continue or end the pregnancy as traumatic' and...
She describes the day she discussed whether to continue or end the pregnancy as traumatic' and...
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I missed out, I mean I should have mentioned to you that one of the things we talked about on the Friday, the day of the diagnosis, was, I made myself ask a sort of, you know, “Okay, if I decide to go ahead with the termination, how does it happen? Because I need to know, you know, if I'm going to consider it. I don't think I want to do it but, you know, please tell me how it happens.” And I still can't talk about it now without getting really emotional about it.
Do you want to stop for a bit?
Ooh, gosh, it takes you by surprise sometimes. No I don't mind, it's all right. It takes me by surprise because of the strength of feeling remembering that day, it was such a traumatic day. Oh God, yeah, sorry.
I asked one of the, I don't what, I don't know exactly what she was, I'm not quite sure what her position was, quite a senior person anyway, in the fetal medicine unit. And she was the one who was talking to me, very, very nice.
They were all, they were all very nice people. I mean very, they all had very good manners, I mean, when they were giving these, this bad news. But she said, “Okay, well, what would happen would be, you know, we would inject, put, you know, inject something into the baby's heart and it would stop. I said, “Well, would that happen quite quickly, you know?” And she said, “Yes, yes, it'd be very quick.”
I said, well, that was actually a horrific idea to me, that's why I find it very upsetting still to talk about it. And she said “The alternative would be palliative care; that you would give birth to the baby but then we wouldn't operate and he would naturally die.”
So I said, “Okay, well, how would that happen exactly?” And she said, “Well, you know, the labour would be induced or you'd go into natural labour. You'd give birth on the labour ward with all the other mothers, you know, were perhaps having healthy babies and keeping their baby and then, you know, then we wouldn't intervene, and he would probably die and we'd try and keep him as comfortable as possible until he died.”
And all these things were such awful prospects, you know. When you're pregnant you just want to nurture this child you're carrying and all your instincts are so, you know, protective, and all these things they're telling you, like “Right, you can offer your child up like a lamb to the slaughter, I'm going to stick a needle in his heart and stop it, you know, or you can give birth and then watch him die or, you know.” All of them were just so horrendous, you know.
And I made myself, that weekend, think about them, think, “Yeah, but how do you weigh that up, how do you weigh up that horrible experience, you know, for the child against longer term suffering or, you know, quality of life or the fear the child might have of knowing that they've got a serious condition that might kill them?”
And I really was trying to weigh that all up at the time, and that's what we didn't really have support with, to be honest. The actual medical side of things was great, I couldn't fault it. But how, as a, you know, as a human being you make those sorts of decisions, you know, “Do I stick a needle in my baby's heart and kill him now? Do I give birth to him and then sort of hope that he doesn't die, have a heart attack and drop dead at the age of 5, you know? Or, if he survives it all, which is the best you hope for, how will he live with the burden of this knowledge of this terrible uncurable thing?
Is it going to scare the life out of him, you know? And is the trauma that
When making decisions which involve morals and values there are certain factors which shape the choices made. People often want to be more involved if they, or the person they are deciding for, have a preferred outcome based on values or beliefs, for example religious convictions. Sometimes people instantly know which choice is right for them, but in other cases people’s idea of what they would like to happen may change during the decision making process.
She did not have diagnostic antenatal screening because she knew she would not end the pregnancy,...
She did not have diagnostic antenatal screening because she knew she would not end the pregnancy,...
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(English translation, audio clip in Mirpuri).
We said that we would not have termination. We thought that we will get checked, and we'll know, but we will not have a termination. Even if we get checked, we would not terminate.
At least it will come into the world. Okay, it will see whatever life it has with its mother and father.
So then you had your daughter with thalassaemia?
Yes.
After that, why didn't you have tests for your other children?
I didn't have the test because there wasn't any point in getting checked, because neither did we want to have a termination and neither did we think there was any point. Now there was no point in me getting my daughter tests.
And did you clearly say no each time?
Yes, each time.
And then when your children were born, when you were pregnant, what feelings did you have, during pregnancy, about thalassaemia? 'What will happen if the child has it?'
I left it to Allah. I was dependent on the beautiful Allah, that Allah will do whatever. The individual cannot do anything.
When she realised that her baby would not have survived long after birth she changed her views on...
When she realised that her baby would not have survived long after birth she changed her views on...
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I mean, at first, when we first discovered that, you know, there's a problem with our baby, my instant reaction was 'Well I'll be going to term, because there's no way I could sign a consent form for a termination'. That was my instant reaction, but then as time goes on, and we agreed we'd talk about it every day, that we must sit down and have a conversation about it every day, and you know, agreed that we weren't, you know, we would just talk if we needed to say something.
And I think as time went on, and you are just, you know, looking into it more, your initial emotional reaction changes, and you start actually thinking about what the implications are for the baby, for our daughter, for us.
And I mean, our main - I mean obviously this is over several days, you know - we'd got to this decision and within this the amnio results came back. I think we had to wait 10 days, and the consultant who'd initially scanned us rang me with the results, which confirmed that, yes it was a T13 baby, which was actually quite reassuring because it gave us an answer. You know, your baby has got these abnormalities because they've got a chromosomal abnormality.
Plus it meant I felt that we could make a decision without sort of having to look into likelihoods and statistics, and whether they'd be fit for surgery at birth and all those kind of, this was, it was almost like saying, you know, your baby, unfortunately, is going to die. They'll die when they're born, and so we were, if you like, the decision was taken out of our hands. I felt it made it easy to make that decision.
They were shocked when a nurse asked them, in a roundabout way, to consider turning off their son...
They were shocked when a nurse asked them, in a roundabout way, to consider turning off their son...
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Mother' They kept him [son] sedated for about five days and then decided to bring him round again and do another CT scan. He was still fairly agitated, and the CT scan showed multiple infarcts across the entire surface of his brain. Now this was about eight days in to the attack, to a point where I thought in my ignorance that he had survived and therefore he would survive. I thought he was desperately ill, but I thought he was safe. When they had the second CT scan, actually the third, because they took one in the first hospital, but the second one at that ITU, they sent it to the regional centre for an opinion. And the opinion was that he could not survive. But if by chance he did, he would be in a persistent vegetative state.
So a doctor and a nurse took us aside and told us to prepare ourselves, and in a roundabout way asked us if we wanted to turn off the life support. And this was a desperate shock. Because no way had we been prepared for the idea that he would not survive. And the longer he survived, the more likely it seemed that he would. And we came home kind of on autopilot.
Father' Yes, we had to drive about 12 miles from that hospital to our house. And it was in some kind of odd state. I can't tell you how I got home.
Mother' We were just driving slower and slower, just kind of…
Father' But they told us to go home and consider our options. But they didn't explain to us what our options were. And because my wife has worked in the medical area for quite some time, we could conclude what our options were.
Mother' Which was do not resuscitate and organ donation, those were the only things I could think of. So I called one of my colleagues, who's actually a bereavement counsellor. And she came immediately and was very supportive through…
Father' It's okay.
Mother' Sorry.
Father' It was a very black time.
Shall we take a break?
Father' I think, no, it might be better if we can carry on.
Mother' Yes. While she was here, the consultant rang and said, “No, forget all that. Don't worry about that for the moment. What we're going to do, we've got a plan. We're going to put him back to sleep for maybe a couple of weeks and then wake him again and see how he's doing”. And she immediately said, “You know, if they've got a plan, it's not as bad as you might have been led to believe. They wouldn't have a plan if it was that bad. They'd just let it go”.
Father' The key thing was that they didn't know. They didn't know what the outcome would be. They'd sent a photograph to a local centre of excellence, who'd gone, “Oh, it's desperate”. But they, this particular consultant obviously thought, “Well, we don't know that that's the case”.
Mother' Yes.
Father' “We're not going to give up on this lad yet” was his words when we saw him the next day.
Nobody could say, “This would happen.” What they should do is be sure if they say, “This will happen” that that is the case. If they don't know they should say, “These are the possibilities. And these are, you know, this is the possible outcomes.” Or, you know, they need to be more careful about saying, “Thi
When the doctor explained that her unborn child had a condition which was 'incompatible with life...
When the doctor explained that her unborn child had a condition which was 'incompatible with life...
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I think it was just too much to really remember. I was just devastated, but numb I think. I just didn't really know what to say or do. And your whole life falls apart in one sentence from somebody, and it was just awful. But I don't think the full extent of it had hit us by then.
We sat waiting for the consultant and she came in. And she was absolutely great. And she came in and she said, “Hi Mum, hi Dad,” to us. And she was a really nice woman - a bit eccentric but really nice - and she said, “Look, this baby is not very well, the abnormalities we've found with the heart and the limbs,” and she said, “At the moment it doesn't look like. The problems the baby's got are looking like they will be incompatible with life”. That's the words that she used.
And again that was a shock because a hole in the heart is something what you think can be operated on, and short limbs, well, maybe they would grow or they, we did, it wasn't something we were expecting, I don't think, that she just said. So from pretty much the word go we were told that the problems the baby had at 20 weeks were incompatible with life.
Which really, from that moment on I felt I didn't have a problem with making a decision. So that wasn't part of the problem for us. It was, the decision in a way was taken away from us because we were told, “Your baby will not live”. So we didn't have that choice of saying, “Well, we could have a disabled baby or we could have a baby with this problem or the baby would need x amount of operations”.
Pretty much from the word go we were told that the baby was 'incompatible with life', and it would be a case of between the 20 weeks and the full term that the baby wouldn't survive and really it just depended on the timing I think.
It was difficult to decide on the best course of action because no one could be sure of the...
It was difficult to decide on the best course of action because no one could be sure of the...
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We came back, and when you're actually faced with actually having to do it, and actually think about it, it's not as clear-cut as that.
So we discussed it for a week and I certainly wasn't sure to start with, certainly I wasn't certain about what I wanted to do because I was still very unclear about the final prognosis and, actually how likely we were to have a severely disabled child. Because they weren't able to actually say, 'We can categorically tell you that this will be the outcome of the pregnancy if you continue it - that the baby will be blind, the baby will be deaf, the baby will...'. They were unable to give any sort of idea as to the severity, which made it very difficult, actually.
We weren't making a decision based upon anything other than, “This is what we think will happen. This is what is likely happen.” So I found that quite difficult and kept thinking, 'Well maybe it will be okay - maybe things won't be so bad'.
We did look at a, on the internet at, for a lot of information, specifically the development of babies' lungs, and how they are affected with lack of amniotic fluid. And it did actually become quite apparent that there would be no further development of the baby's lungs, and if I went back to when I think the amniotic fluid may have leaked, the baby's lungs would have been between 19 and 20 weeks, and that's very immature lungs to expect to be able to sustain life.
Outside influences often shape how people make their decisions. People may choose to ask friends and family to help advise and support them in making difficult decisions.
While in intensive care, he had trouble making a decision about potentially risky medication for his wife.
While in intensive care, he had trouble making a decision about potentially risky medication for his wife.
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So they were just like God no, and he [the consultant] said, "The only thing we could really do now is there's a drug called Xigris, now we hadn't got it in the hospital and we've never used it before, but we can order it in, but you've got to understand that it, it is new and one of the side-effects of it could cause an internal bleed, either in the brain or internally, in which case that's really all there is to it then."
So [my husband] was like really upset and he was saying to my sister, "I don't know what to do now because they're asking me to make a life choice for her, do I just like let her like try and fight now, she's not responding." They've given me three lots of antibiotics, they kept on saying, "She's not responding." And then he said, "Before they said about the Sepsis." They said, "She's not responded to three lots of antibiotics. We think the pneumonia might be secondary, there might be something else and we're going to give her a cat scan."
So my sister and [my husband] were like, "Do that." So they come back and said, "We can't find anything else, she's showing signs of Severe Sepsis". So [my husband] was like, I could say yes to this and she could be dead, 'cause it could cause a haemorrhage or something." So [my sister] said, "You've gotta give her a chance now because she's damned if you do and damned if you don't, so you've gotta give her that chance now." So [my husband] was like really upset and couldn't cope with it all and he signed the consent form, he said, "Yeah, give her the Xigris." So that went on for a few days, but I just didn't like really do much, I mean I didn't have an internal bleed or anything but it did stop it like spreading a bit.
When making the critical decision to allow her husband's leg to be amputated while he was in...
When making the critical decision to allow her husband's leg to be amputated while he was in...
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The chest infection unfortunately became really bad, and he was taken to Intensive Care. I think that was about the 10th February and in Intensive Care obviously he was monitored very closely and they kept an eye on the foot, but because he had had such a severe heart attack they were concerned about another operation and the doctors kept me informed as to progress, but the toxins in the gangrene started travelling and I was told that my husband would die if he didn't have the operation or he could die during the operation. They were no guarantees and obviously the choice was mine.
Both my sons do not live locally, one lives abroad and one lives north, and I made the decision but obviously phoned my sons at the same time and the hospital said they would leave it as long as possible in the hope that my sons would both get there in time. Which they did and obviously I told them the situation on the telephone and they said there was only the one decision. You've got to go for the operation to give him a chance to live, which we did. And on the 14th February he went down to theatre and they amputated his leg.
His wife would not let him sign the consent forms for her operation as there was a risk she could die.
His wife would not let him sign the consent forms for her operation as there was a risk she could die.
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Husband' And the wife wouldn't let me sign the consent form, would you? She wouldn't put it on my shoulders. She said, “I'll sign it myself.”
What were the consent forms for?
Husband' To have the operation.
Right, so you didn't sign them?
Husband' Wife wouldn't let me sign it. The wife wouldn't let me sign it. She wanted to sign it in case anything happened. Because he was honest, he was very, he said, “I don't want” he said, “I can't give you a percentage.” He said, “Your wife is very ill.”
Wife' He didn't tell me that, did he?
Husband' No, he told me. He said, “If we don't operate now” he said, “You won't have a wife by the morning.” And they operated. They took her up to Intensive Care. I stayed there. I don't know, I don't know what time, I can't remember much about it to be honest with you.
Parents considered the effect that having a sibling with microcephaly would have on their two...
Parents considered the effect that having a sibling with microcephaly would have on their two...
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Mother' For me it was when the neurologist said that this baby will have no quality of life, and it will not know that it exists.
Father' It was the last time we went for an appointment, wasn't it?
Mother' It won't know that it's existing, and I just thought then - and we talked about it.
Father' She used the phrase, "even if the baby survives".
Mother' And I wouldn't want to put a child of mine through the suffering of dying. And we have a daughter, and at the time, two and a half, could you cope with a dying baby, and a two and a half year old? Is it fair to her? Is it fair to us?
Father' Well, they said it might not survive the labour, or even as long as that, anyway.
Mother' I'd have hated to have seen any child of mine go through any pain.
When making the decision to end the pregnancy at 17 weeks, they wanted to do what was best for...
When making the decision to end the pregnancy at 17 weeks, they wanted to do what was best for...
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Mother' But yeah, once we knew it was the most severe case and once the consultant looked at me and said, “How pregnant are you?” And I told him, and he said, “I can't believe you're still pregnant. Most of these are gone by 11 weeks.” And that's when I kind of concluded that I was trying to miscarry for thirty days and my body just held on. And it was a bit cruel, really, that my body held on but...
Did you think about just letting nature take its course?
Mother' I don't think we ever did.
Father' No, I don't think so. I mean, we had, because of circumstances we had, you know, time to think about what we were doing. You know, it wasn't a 'see the consultant and then 24 hours later proceed with the, the termination'.
Mother' We actually waited.
Father' There was a fairly lengthy period. So we had time to reflect.
Mother' Because at that point I would have to give birth anyway. So we waited about a week and a half before we did that, which was...
Father' And there were moments when we, you know, you have doubts. You think to yourself, “Is this right? Are we playing God?” and so on, you know. “Should nature take its course?”
Mother' We still don't know that we did the right thing. We just, we made the best decision we could with the facts that we had at the time and we did what we thought would be the best for us as a family and for our child. You know, I can't say that we only did it for our child. We did consider us as a family and taking care of a child, and not knowing how bad it was going to be, if she was born alive.
I mean, the consultant said, “I don't think she'll be born alive, and if she is born alive she's going to need instant surgery, and I don't give her long. Five years tops.” And I thought, “I don't want my child to suffer”. I would rather have to live with this the rest of my life than to see my child full of tubes and know that...
I felt that was selfish for me to do, just so that I wouldn't have to deal with what we now have to live with. But it was just heartbreaking to have that be our first decision as parents. So that's the hardest part.
It was very important to this woman with terminal cancer to die with dignity before becoming...
It was very important to this woman with terminal cancer to die with dignity before becoming...
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I want to take control now. I don't want to be resuscitated. I don't want intervention. If it's going to happen, I want it to happen. I don't want to be in a vegetative situation where my family have to sit round a machine that's breathing for me and thinking for me. I want them to remember the Mum that fought to the end and just went to sleep.
Have you written this out?
I've written it out myself as I want and instilled it in a letter but I've got to... I've evidently got to get a proper “living will” done. I have notified my hospital that I do not want to be resuscitated, something I did have to rescind recently but it's back in place again now.
Why did you have to rescind it?
Because I had to have surgery on my mouth and it was just in case anything went wrong during it, but it would be a bit pathetic going out having your teeth removed. So, I decided after great talking with the doctor that I would agree to it being removed while that was being done. If anything went wrong they would resuscitate me but I was still tongue in cheek, well tried to be, while it was happening because I did feel that if I had to go out then, actually I didn't really want to come back.
If I'd known, you know it was going to be so uncomfortable afterwards I probably would have changed my mind anyway. But apart from that, it's something I'm in the throes of sorting out. I will keep a copy with me at all times so wherever I am nobody tries to resuscitate me or if anything else comes along, that I will refuse treatment.
Have you talked about the kind of terms you've specified with anybody?
My consultant. We've talked. He's known me for a very long time, since I was a kid and it's hard for him. It's hard for me. He knows I will fight for as long as I can but he also knows that I will go with my dignity.
A woman with chronic pain was concerned that she may become addicted' to her medication, but...
A woman with chronic pain was concerned that she may become addicted' to her medication, but...
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How do you find talking to your GP about your pain?
He's terrific. He's absolutely terrific, you know like. He'll just listen and he always tries to do something, you know, because, I mean, I know if you're on long-term painkillers obviously you have to watch out for things like addiction or dependency. But my GP has explained that, for people who are in pain, if they're on narcotic drugs, normally you do become dependent on them, but it doesn't mean to say that you're addicted and that when the pain goes away, if they fix the pain somehow, that you can come off these drugs obviously in a tapered fashion, but it's not a huge problem and it's more important to treat the pain than to worry about, you know, that sort of situation.
In fact, he said to me that some patients who are labelled as drug seekers are actually people in pain who are under-medicated and of course they're going to be drug seekers, because they're in pain and they haven't been treated properly, you know. Obviously, you do get the people, you know, who do want to abuse drugs, but that's a different kettle of fish altogether really.
There are times when people have to make decisions for another who is unable to decide for themselves, such as a young child, a relative who is unconscious in intensive care, or a family member with dementia. People talked about how it was important to establish what the person themselves would want or value.
She carefully considered the outcome of her son surviving intensive care and made choices guided...
She carefully considered the outcome of her son surviving intensive care and made choices guided...
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I would've wanted my son back in any state, after all what he'd done, whatever medically, but I'm 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. He's 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 would've been very selfish because I don't 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.
You've 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 weren't 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 he's done all those things before. That's not to say that I would, somebody having a child like that from birth, that's a totally different aspect, totally different.
So again it's the selfishness of what I want and what my son would've wanted.
The husband and daughter of a woman in intensive care chose to not resuscitate her because they...
The husband and daughter of a woman in intensive care chose to not resuscitate her because they...
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Daughter' Basically the other guy [consultant] had told us that she was very ill and probably...
Husband' It wasn't looking good, yes.
Daughter' He said, “It wasn't looking good and to be honest I am not sure she will be coming home” is what he said.
Husband' Hm.
Daughter' But by the time we got to the relatives room, which is about two, about three days later, he sort of, I mean you know we made the agreement that if she had another heart attack they wouldn't resuscitate her.
Husband' That was the other thing he said in that interview, you know that was their feeling that they shouldn't attempt to resuscitate her.
Daughter' Yes which was fine.
Did they ask you should they attempt to resuscitate her. What did you say at that point?
Husband' Well basically we took his advice and said well…
Daughter' Well there was no point was there.
Husband' No. No. We wouldn't want her to be resuscitated just to be a vegetable. She wouldn't like that.
Daughter' We had also come to terms with it, I mean really by that point, because we were sort of aware that she was very poorly you know.
He knew his wife Teresa, who had MND, would not have wanted invasive ventilation to keep her alive.
He knew his wife Teresa, who had MND, would not have wanted invasive ventilation to keep her alive.
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Unfortunately by this time we're talking approaching Christmas of 2005 and Teresa's condition had deteriorated quite significantly. She was having difficulties, severe difficulties, with swallowing and the hospital were saying to her that she should be having a PEG tube fitted. She wasn't terribly keen on that idea but was allowing the family to persuade her to have it done because we wanted her round for as long as possible. And she said that she would like to get Christmas over and then, OK, she consented that she would have it done. During Christmas she appeared to develop a chest infection which is obviously the thing that we were all most concerned about, the thing which is most dangerous to people with MND particularly ALS or bulbar onset. Shortly after Christmas she was admitted to hospital as a result of the chest infection but with the use of antibiotics and intensive physiotherapy and oxygen she was able to be discharged.
She was discharged less than a week and whether it was another infection or if it was the same infection returning we don't actually know but was then re-admitted again to hospital, not the same hospital as an emergency with breathing difficulties. We did while she was in the hospital this second time in January look at the feasibility of a transfer to the hospital that would do a PEG tube. The reason that we were looking at that was because obviously the primary concern was fighting the chest infection but while Teresa was fighting this chest infection she wasn't taking nutrition. And for somebody who was only seven or eight stone can't afford to lose much and she was clearly losing weight rapidly. With everything going on obviously she probably didn't have much of an appetite.
Eventually the hospital did start to feed her intravenously. Her breathing difficulties got worse and worse. And we went from oxygen to positive pressure ventilation and the use of a, I believe it's called a Nippy Unit, which initially I understood was usually used only at night. But within days she was virtually living in it and still having considerable difficulties in clearing her chest and needed almost constant physiotherapy in order to breathe.
We had at times, at the time when she could communicate effectively I had discussed with her where she herself wanted to draw the line. We did not want to do, embark on any procedure that she, herself, I knew did not wish to consent to. And reinforce that, to, with Teresa, with Teresa had actually given me her power of attorney, an enduring power of attorney so that I could obviously speak for her authoritatively with the healthcare professionals. Her dividing line, the PEG tube was close to it but she had indicated that quite definitely she did not want invasive ventilation. That was, that was her definite line in the sand.
It actually wasn't discussed as an option at the hospital. They were using the positive pressure ventilator and high levels of oxygen. And perhaps they felt that invasive ventilation wouldn't have given any improvement over what they were already doing anyway. I suspect that was the case. And that was the situation when Teresa finally passed away on the 31st of January 2006.
The GP told her it was no longer safe for her mother to drive. She found it difficult to take...
The GP told her it was no longer safe for her mother to drive. She found it difficult to take...
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Now I, certainly one of my sisters felt her driving was risky and I didn't. And I felt it was a bitter blow for her to lose that car but sure enough she did because the doctor wouldn't sign the thing saying she could keep it. So I went and saw the doctor and persuaded him, the local doctor, to sign a form for the police saying that she could drive, you know, etc, but he wouldn't 'cos he said 'You'll never forgive yourself if she's in an accident'.
My feelings were that it would have such a bad effect on her not having a car that, you know, if she had an accident, well obviously that would be terrible, but in a sense it was the quality of her life that I wanted to keep up.
So there were heated debates about that with my sisters and one of my sisters was more keen that she did lose the car and then I had the very painful job, and this caused a lot of friction between me and my three sisters, I volunteered to be the one to go and take the keys off her, the car keys.
And that I have to say [interviewers name] was the most horrible time I've had. I was crying before I had to do it because it felt like, just taking someone's freedom away. You know, someone who was always so independent and it was horrible, it's making me feel tearful now just thinking about it. And of course you know, then my other sister turned up with a whole weekend of circular questions 'cos her memory was going then, this was about two years ago, about why and how unfair and outrageous and she went to a solicitor and what an ageist society we live in and blah, blah, blah, blah, blah. And we had to hide the keys. So that was grim and I have to say for me that makes me feel a horrible thing, it was horrible to do that to an old lady and to your mother, yeah.
That was my worst point. And I don't think anything will be as bad again. And so much so that I felt so angry with my sisters afterwards I did write them a letter calling them cowards and everything else. 'Cos one of them was meant to come with me and she didn't and I was very annoyed.
Sometimes people making difficult decisions involving values immediately knew what their ‘right’ choice was.
This couple had no doubts about ending their pregnancy because they felt their baby would have no...
This couple had no doubts about ending their pregnancy because they felt their baby would have no...
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Mother' We went back Monday morning to see the specialist, and she said, yes, there was something wrong with the heart, and the head was not the right shape - strawberry-shaped - and she couldn't actually find a stomach on the baby. She couldn't say, she thought probably 80 per cent chance of Edwards'. She couldn't say without a, and our choices were then to have an amniocentesis, or she could arrange for a specialist to see us in [city] for the heart, which we opted for.
And just because there was an appointment free, we got one the next day, went up to the specialist in [city]. And, yes, the heart, there was at least 3 major heart defects, which would have meant an operation at about a few days old, an operation at a few months old, an operation at a few years old, and our baby would never have a healthy normal heart. She would always have problems. And I, there and then we didn't... well... we had the decision then to terminate.
Father' Yes.
Mother' We didn't actually discuss it I have to say. We didn't, we didn't discuss it, did we? I don't know how we...
Father' Well, we, they told us everything, showed us, he drew diagrams of what he thought was going on, and this... and he explained what would happen, you know. And so really the, it was so, he was very good, wasn't he?
Mother' Mmm.
Father' He explained it so well, that it was pretty obvious that the child wouldn't have a very good life.
Mother' Quality of life.
Father' Quality of life.
Mother' We didn't sit and discuss it. We were, we were sort of shown into a room with a midwife, and it was then said, sort of said, you know, “You should decide the future from now on, you could have an amniocentesis”. He again strongly suspected Edwards' syndrome. In which case Edwards' syndrome babies don't survive anyway.
Father' No.
Mother' They're non-compatible with life. Or we could, you know, carry on with the pregnancy, even if it did have Edwards' syndrome. Or if it was just the heart defects, carry on and have operations. But we didn't, I mean we just sort of, to us it was obvious to terminate I think. You know, we didn't need to discuss it with each other. We both felt...
Father' Yes.
Mother' The baby wouldn't have had a quality of life. At best it wouldn't have...
Father' My feeling was that it was cruel. It would have been more cruel to, for the baby to go full term and then die naturally, or suffer and die than it was to terminate. And that's how I looked at it, and still do.
A woman with terminal cancer has carefully considered the implications and how she feels about...
A woman with terminal cancer has carefully considered the implications and how she feels about...
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When I know I'm not going to be able to cope with life any more, the pain is bad now, I'm on morphine, I get a lot of break through pain. When I get to the pitch where I really can't cope with anything anymore, where my quality of life is totally gone, I will tell my husband I want a really good day out with the kids, which is when he'll know that when I go to bed that night I won't wake up the next morning.
Because you're going to take control?
Yes.
Have you talked to anyone else about that?
Yes I've talked to my GP about it. He wishes I lived in another country because that decision would be helped.
This is something I talked about to your friend this morning, and we talked about the Government's national policy on it.
Yes
On assisted suicide and euthanasia,
Yes
And how there's a lot of debate at the moment about this,
Yes
And I wondered like if you were in control of legislation what would you say should happen?
It has to be really carefully dealt with. I think that you have to really look into it seriously, whether this is the right thing for the right person because I think there is the risk it might be abused. But with myself if the legislation was there then it would be nicer for me so I'm not on my own which I know I will be because I don't want any of the family here when it happens.
Why don't you want anyone with you?
Because I don't want them involved, I don't want them to get in trouble.
You don't want them to get into trouble?
No. Which is a tough one.
But I shall concentrate on the day we've had out beforehand.
Will you explain it to them in a letter or...?
I've done it already yes. I've already written a poem to be read out at my funeral. I've written a letter to both my children. In the letter I've told them if they've ever been angry with me and they're feeling guilty please don't because it's no more angry than I felt at myself. I've given them permission to be cross at the end which I think is going to be important for them because they will be angry, they will be cross. They'll be hurt, they'll want to know, they'll be in denial that it's happened.
You've thought about it so deeply and so thoroughly haven't you?
Yes I've, I have because I wanted to stay in control.
Well thank you for telling me all that because it's such an important,
Yes
Aspect of everything isn't it?
Yes, yes
And anybody like me tries with difficulty to put myself in your shoes.
Mm
No one can but respect what you said.
Yes. I think if some of these ministers and politicians who are against euthanasia, I often wonder if it was their life or their wife or mother how they'd feel then. I don't like my children seeing me in pain because it upsets them. I don't like being in pain but I have to cope with it. The one part I hate about being in pain is I get short tempered sometimes and it worries me if I've snapped at
After making the decision to end the pregnancy she did not welcome the extra questioning she...
After making the decision to end the pregnancy she did not welcome the extra questioning she...
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And I then had the job as I say of convincing the consultant at the local hospital that I'd made an informed decision about terminating the pregnancy. And I don't know if they do this for everybody but he questioned and questioned and questioned whether I understood the diagnoses, the prognoses.
And he kept saying things like you know, “You do realise scanning machines aren't crystal balls they, people make mistakes looking into them.” And when you're in a situation like that you want to hang on to any grain of hope there is, and I thought now is he telling me everything's going to be alright and they've made a mistake?
Having got to the point of having made that decision sort of any grain of hope you hold on to it and you think well maybe he's telling me that they've made a mistake, maybe everything will be all right and - so I sort of stayed with my feet on the ground, and tried to explain that I understood what I'd been told at the, at the big hospital and from what they'd said there wasn't any hope and that I wanted to terminate now because I thought it would be much more distressing losing a baby at full-term.
I'm pretty sure they gave me a tablet after that appointment to start softening the cervix, once I'd convinced him and signed the pieces of paper that was it.
She felt rushed into the decision to end her pregnancy (due to a foetal abnormality), but took back some control by deciding to allow the baby to be born alive.
She felt rushed into the decision to end her pregnancy (due to a foetal abnormality), but took back some control by deciding to allow the baby to be born alive.
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And at this point, when we got the results we also had an appointment to go back to our first hospital to discuss with the obstetrician what we wanted to do. So we went to see him.
Unfortunately, I don't know whether he hadn't read our notes before he came in or what, but he was probably the most unhelpful professional that we met. He seemed very, he was like, 'Right, you've made the decision to terminate so let's just get on with it,' and, you know, 'Go home and forget about it.'
And in fact, we were wanting sort of more information from him and he said, you know, explained about taking the tablets 48 hours before you want to go in, and so he was saying, “So, if you want to take them now and come in, in 48 hours,” and I was saying, “No, you know, I need some time to think about this', and I was thinking more like, we'll be coming in, in 2 weeks' time.
He seemed, he explained to us that for some terminations you can have under scan, under ultrasound you can inject the baby's heart with potassium, if you like, to do the termination, and then you give birth afterwards, which for me was horrific and was just not an option.
I just can't imagine, you know, it was really, one for me, I didn't want to give birth to a baby that was already dead, to me that was even worse than the situation we were in. And to watch it on screen that happening to me just sounded absolutely horrendous, just cruel.
So when I said to him that I didn't want that, he seemed, he was almost like quite surprised because I was telling him what I wanted, rather than him telling me what was going to happen and me saying, “Okay.”
So I said to him I didn't want that. I said that I wanted to give, just to give birth and, you know. And the fact that I said to him that I wanted a couple of weeks to think about it. As well as the practicalities of sorting out baby-sitters. [husband's] parents were away on holiday so we had to wait for them to come home and things like that. And when I said to him, “I want to wait a couple of weeks,” his, his comment was, “But you do realise your baby might be alive when they're born?”
Which was like, 'Yes.' And that seemed to be a problem, “Well, that means you'll have to get a birth certificate,” and he didn't for one minute seem to think that I wanted, I wanted a birth certificate. I wanted my baby to be alive when they were born because I wanted them to die with me, and he didn't seem to have thought about that.
And, you know, I can understand that unless you've been in that situation you wouldn't think about things like that, but it seemed like he had a very narrow view of what happens. It's like, you've decided to terminate this pregnancy so 'let's just get on and do it and not think about it, go home and get pregnant again' sort of attitude.
And he didn't seem to grasp the fact that this was my baby, and I want this baby but I'd found myself in these circumstances, I want this baby to born alive.
Dealing with difficult value-based issues meant that people were in a heightened emotional state and could sometimes feel offended or upset during or after consultations. Feeling confused and unsure of the best course of action is common when coming to terms with a difficult diagnosis. People described how they looked for hope in what the doctor said to them and sought ways to share the decision or seek emotional support from health workers or friends and family.
She consented to giving her mother a tracheotomy when the doctor explained that without one her mother would die. But she still felt devastated about this choosing this risky procedure.
She felt uncomfortable that she had to have sole responsibility for signing the consent form to...
She felt uncomfortable that she had to have sole responsibility for signing the consent form to...
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The other thing that I found really difficult - and I still do - is that you have to sign a consent form to have, to end a pregnancy. And I had to sign my baby's consent form, and my husband didn't. And I feel like sometimes it's just me. I know it was a joint decision but I find, I found that quite difficult to handle. And since ending the pregnancy my son's had surgery, and I made sure it was my husband's signature that was on it, because I found with it felt like a tremendous responsibility. It felt like it was all mine, and yet I knew it was my husband's as well. It was a silly thing, but perhaps symbolic that I found quite difficult at the time.
Health professionals may feel that value-based decisions should involve the individual and may therefore offer less directive advice than they might in other circumstances. However, if they offer an opinion, it can be welcomed and appreciated.
They would have liked more direction from health professionals when making difficult decisions...
They would have liked more direction from health professionals when making difficult decisions...
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Father' And, and my recollection is when we, when we got the letter it was, it was a sort of terrible shock because we weren't warned. We knew, we knew that obviously the blood test was, was, that it had taken place and, and the samples were being tested.
But we got this letter. And things did move very quickly, didn't they? I mean that, you know, the next day the nurse was coming and I mean it was a, it was a very sort of confused night really, wasn't it? We were very nervous, because we knew the, you know, we knew what the odds were. And I think my recollection of going for, to the hospital to see the genetic specialist, it was very, it was very other-worldly. I remember sort of almost as she was talking to us about the testing and the results, it was almost as though she was talking to us and I was almost looking over my shoulder as to, “Who is she talking to?” Because it felt so, I felt so detached from it. And I think, I never felt pressured that we should have, we should do any particular course. We, I never felt that we should have a CVS, although we were aware that the sort of the time limit was, was on us almost. They wouldn't be happy to do a CVS after a certain time.
But the abiding feeling I had really, apart from feeling that it was almost, that we were, they weren't talking to us, was that you almost wish that somebody would help you and sort of say, “Well, I think you should do this.” But of course they, they wouldn't, they wouldn't say either way, “We think you should do this. We think you should do that.” And it was very, it was very difficult, wasn't it? I think it was just the two of us and we were agonising over things. And, just because of the timing of it all, we didn't - I mean it wasn't the hospital's fault - but we felt very pressured that we, we had to sort of make a decision, “Should we have the test? Should we, should we not have the test?”
And I think I was sort of quite firmly of the opinion that if a child had a condition such as Down's syndrome, as well as full-blown thalassaemia that it would be just too, it would be too much to inflict upon somebody. And we did have, and we did have terrible guilt about what we were doing. Even sort of continuing with the pregnancy, I think we felt that we'd made the decision almost for us that we wanted a child, but you know, the child didn't have any choice as to being born with such a condition.
The consultant told her that in her position she, too, would have opted for a caesarean. This helped to reassure her that she had made the right choice. Played by an actor.
The consultant told her that in her position she, too, would have opted for a caesarean. This helped to reassure her that she had made the right choice. Played by an actor.
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But I met with a, a female, a registrar about two months ago and I think she was' she really went over the birth plan with me, which I found most helpful. She was expecting a baby herself so I think she kind of understood.
Right. And can you tell me a little bit more about the discussion that you had with her?
Yeah. She had a good look at the notes and said, 'You know, really, I think if I was in your shoes then I would go for a section, too'. She said just perhaps failure to progress was maybe slightly small or maybe it was a big baby, or, you know, whatever, but just for health reasons, on this occasion she said, 'I really think that, you know, that would be best for you'. So that helped tremendously.
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