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Pre-eclampsia and high blood pressure in pregnancy

Decision-making and relationships with medical professionals during hospital stays

While the women we interviewed were in hospital, decisions had to be made about their medical care. The clinical steps taken by doctors and nurses depended on how serious their condition was and whether mother or baby had any other health problems. Sometimes it was possible for women and their partners to be included in decisions about taking medicines or delivering the baby early. But in other situations the pregnant woman was too unwell and the risks were very serious, so doctors took more control over the situation.

Having a good relationship with doctors and midwives was important for many women, especially at times when they felt frightened and vulnerable. Julie fondly remembered a midwife who stayed with her overnight when she was very unwell: “even though things were going wrong, I felt safe and I trusted her”.
 

Paige didn’t get much of a say in decisions about her medical care, but also thought that she wouldn’t have had much to add when she was very poorly.

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Age at interview: 20
Sex: Female
Age at diagnosis: 19
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And when the doctors and midwives were discussing your care and what was happening next, did you feel included in the conversations?

Not really. I'm just trying to think; when I was in hospital not really; it was sort of they were talking to themselves. It was like, "Right, this needs to happen in order for this and if this doesn’t happen then we'll be doing this."  Although I wasn’t really included in the care they were friendly; they were talking to me; they were talking like… acknowledged me but I didn’t really get much say, apart from the catheter thing; I didn’t really get much say. It was like, "Right you… this needs to happen." But then, looking back on it I was so ill I probably would have just agreed with everything they said anyway.
 

Helen X was frustrated that clinicians often forgot to introduce themselves when they came to visit her.

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Age at interview: 31
Sex: Female
Age at diagnosis: 31
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I think it was fine in terms of the information that we were given. I think the thing that really struck me was that a lot of people didn’t tell you who they were, or what they did. Like I’ve always felt for myself, I always make sure I do that for patients, because I just know when you’ve got really, like I deal with people with chronic illnesses, but when you’re dealing with so many health professionals, they all meld into each other, and you’ve no idea who anyone is. And to be honest that’s what would have happened, even if these people had told me their names, I wouldn’t have remembered them. But it just would have been nice at the time if the information that you had been given you knew kind of where it was coming from, who, why this person was telling you this. So that was one thing that sort of frustrated me a bit. Well what’s your name? What do you do? Why are you standing in my bedroom? You know, so that would have been. That would have made me feel more comfortable. But as I say probably in the long run, it made no difference, because I wouldn’t have remembered who they were. 
Changing situations and revising expectations

Ongoing monitoring, checks and tests in hospital could give doctors and pregnant women more information about their condition which would then inform the next steps. This often boiled down to either continuing the pregnancy or delivering the baby early. Aileen had pre-eclampsia in both of her pregnancies, with her babies being born at 34 and 30 weeks respectively. She had been hoping her second pregnancy would continue longer but her expectations for the pregnancy shifted in hospital, from lasting at least 8 months to reaching the end of 30 weeks: “when things are not improving, […] my goal is getting lower and lower”.

Uncertainty had hung over the women we spoke to. Nicola explained, “every day you'd wake up [and think] ‘Am I having a baby today?’ for the first three or four days, and to start with I think I hoped I'd go home, that it would all disappear. I'd be fine and I could go home for three weeks and go into labour naturally. But it soon became apparent that wasn’t going to happen”. 

For many of the women we spoke to, there were times when medicines and rest were not enough to manage their pre-eclampsia or HELLP syndrome, so their health was at serious risk. Doctors were then faced with the decision about what to do.

A sudden change in the medical situation could be confusing and frightening. Paige was told her baby would need to be born in the next few hours when she was just 32 weeks pregnant. She asked her doctors why she couldn’t stay in hospital and continue taking medicines for another eight weeks until her pregnancy was at term. It was scary when she was told that it would be too dangerous for both her and her baby’s health to continue. Angela recalled how her midwife noticed she had sudden facial swelling when in labour and “just slowly the room started filling with people doing bits and pieces” – she said it was a calm change but there was a sense that the situation had become more serious.
 

The situation changed quickly for Samantha X – she went from expecting to stay in hospital for many weeks to being told she would need a caesarean section very soon.

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Age at interview: 32
Sex: Female
Age at diagnosis: 31
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And I just started to prepare myself for being in for a long, long time. But obviously as the hours went on and I kept having these really serious spikes of blood high blood pressure, and there started to become more talk of, you know, every day that you can go, before you have to deliver is, is good, and I started to kind of have the realisation that, you know, it was, we were going to have the baby sooner rather than later. I suppose I started to, I think I was in denial for a while, because they said to us on the Saturday, “Would you like to see a paediatrician to come and explain to you about what will happen if your baby’s born at 29 weeks and I said, “Oh, no, no, no.” Because I just, I think I just assumed that I would, my blood pressure would go down, they’d be quite happy for me to go up onto the ward and it would still be a few weeks until I had the baby. And then when I had the second major spike in blood pressure and they asked again and I thought, actually, yes, I suppose we’d better speak to someone to… because I’d rather know than be caught unawares. But again, you know, even when they, even at the point where my consultant decided it was time to deliver, even sort of fifteen minutes before then, and all the talk was that I was going to go up onto the ward and so when she sort of said to me, “You know, we’re going to have to deliver the baby.” It still felt like quite a shock. Because I thought, you know, I just had it in my head that everything would be fine. But actually when I saw, when I saw the monitor and it said 205/110, I thought, yes, this isn’t good. This is really bad. So yes, it was really kind of mixed, mixed emotions, because you know, I was trying to get myself mentally prepared for a long stay in hospital. And then I was sort of thinking well what will happen if the baby’s born early and what will that be like and I just never entertained the idea that I wouldn’t have just a normal pregnancy and that I wouldn’t, I didn’t even know anything about premature babies. 
 

Josie’s doctors decided she needed an emergency caesarean section. She had quite recently had an injection to prevent blood clots, which meant waiting longer until she could be operated on.

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Age at interview: 45
Sex: Female
Age at diagnosis: 39
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The CTG (Cardiotocography), for it seemed like hours and hours and hours, and there were some very drastic decelerations, and I'd have doctors come and go and come and go and come and go, and say you know, "We may have to deliver," and … ah I'm trying to think of the actual process because this was all going on from about eight or nine at night till, you know till the early hours of the next morning. So there was… some were saying it was OK and others were saying, "Well we're going to have to deliver." But and then was an issue of the fact that there was no…there were no operating theatres available you know, so I was kind… I felt that it really did feel that night that we were up against it. And I had a Doppler scan and there was a real clear sound of the dip in the heartbeat going much, much slower, and so I'd also only just, a few hours beforehand, had the injection for thinning my blood, so they said, "Well we can't do anything until, you know until you get over that anyway; until your blood starts to thicken up again." So, anyway this all went on for, you know most of the night until about four in the morning where they rushed me, or I rushed, I ran, to a… into an operating theatre and he was… yeah he was delivered in about four minutes.
The situation could change back again. Josie was told on several occasions by her doctors that they would need to deliver her baby very soon but then the situation calmed down. This “hour by hour situation” was very unsettling and left her feeling unsure about what might happen next. 

Balancing risks and benefits

Some women were aware of the balance in decision-making between keeping their pregnancy going for longer (to give their unborn babies more time to grow) and stopping the pregnancy if it became dangerous for them or their baby. Although the thought of their baby being born early was frightening, some women recognised that if they became seriously ill then it could put the baby at great risk. As Claire said, “'you need to be healthy to have a healthy baby”. 

For women whose babies were delivered prematurely, there had sometimes been opportunities to meet paediatricians or see where their baby would be looked after; for example, there are different types of neonatal unit: NICU (Neonatal Intensive Care Unit), LNU (Local Neonatal Unit) and SCBU (Special Care Baby Unit). Josie, Kay, Claire and Samantha X all had visits from a paediatrician. Kay remembered the paediatrician sitting with her in the ward and answering her questions. She liked that he took the time to explain things clearly: “he didn’t spit out garbled medical jargon, he actually spoke to me like a person so I would understand”. Samantha X saw a paediatrician when she knew her baby was going to be delivered at 29 weeks. He explained her baby was likely to need support with breathing using CPAP (Continuous Positive Airway Pressure which keeps air blowing into the airways so the baby can breathe more easily).
 

For Kay, seeing the neonatal unit helped her come to terms with the situation. It was still a huge shock but she also found it reassuring that there was an incubator and neonatal nurses ready to look after her baby.

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Age at interview: 42
Sex: Female
Age at diagnosis: 38
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And I was adamant she… well I didn’t know what I was having, but I was adamant she wasn’t coming out because I knew they weren't good risks. When I was taken back to the ward when I was still in the room of four, the hospital in [City], the paediatrician comes to see you and they take you into intensive care and they show you the room.

And Imogen’s little incubator was sitting – it was a giraffe, it was empty – and it was sitting, just waiting on her, and I think that’s when it really hit me, I'm really ill. This…I'm not going full term with this baby.

I'm kidding myself that I am because I was in denial you know, I feel fine. But then I was like, 'This baby's coming early and this baby's going to be tiny,' and I'd seen the size of the incubator and I thought, 'Oh, oh my goodness she's… she is going to be tiny,' you know and it was quite frightening.

But they show you, and there was no tiny babies in the ward at the time, but they have different stages – you know they’ve got an intensive care and then a high dependency and a family kind environment, the room that’s next down, and then they’ve got individual rooms and then they’ve got… they have got a family room where you can go and see where baby in preparation for coming home. And they went through it all with me and a lot of it I didn’t take in because I was… I was very much in shock. And I was under the impression that babies born at 24… over 24 weeks they can live can't they, and they're like, "Yeah, but there is a lot of complications and a lot of them don’t." And I think the media, because you see so many success stories, you think everyone's a success and actually, no they're not.

And I didn’t know that, I was kind of kidding myself that she was going to be just fine.
Being kept informed about and included in decisions

There were mixed experiences about being kept informed and/or included by doctors and midwives about decisions. Opportunities to ask questions about next steps also varied. For example, Emma and Hanna both said they had wanted more information about what being induced would be like.

Some people said the communication from their doctors and midwives was always good – things were clearly explained and, when suitable, efforts were made to include them in decisions about the next steps. Michael thought his wife’s doctors did “a wonderful job of trying to explain it [a caesarean section] in a way that a medical dummy like me could understand”.
 

Claire thought it was good that her doctors were open about the limits of their knowledge and that they put in the effort to find out more about the situation.

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Age at interview: 39
Sex: Female
Age at diagnosis: 39
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I know my case was unusual.  The fact that a doctor, or any medical professional – I'm saying doctor – but any medical professional can actually say, "Stop, we don’t know what's happening, but let me discuss it with one of my colleagues who might know something," because every doctor has their own experiences especially when they’ve been involved in numerous patient care, different hospitals.

Even just reading different journals there might have been something that just clicked and they said, "Oh, what about this," or a different treatment or, you know a different option. So, for me that was reassuring. I was in a huge teaching hospital, and it was nice to know that that still is the case that, you know even though they might have qualified 20 years ago, they are still able to say, "Stop, we're not sure, we need advice."
However, others said communication and involvement in decision-making about their care was sometimes lacking. Olivia felt there was not much structure or consistency to the medical care she received or the logic behind it: “with the pre-eclampsia, it was like there was no procedure in place”. Claire and her husband Stewart remembered having to ask to see a doctor multiple times and there was a long wait before someone arrived when she started to feel very unwell.
 

Hanna wished her doctors and midwives had been better at keeping her informed. She didn’t think information about her situation was shared between the doctors, which meant she had to keep repeating her story.

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Age at interview: 39
Sex: Female
Age at diagnosis: 37
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I think they could have explained to me what was happening. The problem was, I felt they weren’t forthcoming with what was wrong and they weren’t, they didn’t, they might have diagnosed what was the problem, but they never told me. It was my body. It was happening to me. I should have known. They should have advised me of what was happening to me but they didn’t tell me and I felt the communication was lacking, with I felt they were a bit indifferent as well from their attitude. It was their attitude that troubled me the most. It was not the fact that they didn’t tell me, it was the attitude, very dismissive, very indifferent, “Oh we’ve seen it all before.” But I hadn’t seen it all before. Surely we are individuals. We are not, I felt like I was, it was like a conveyor belt.

What could they have done differently? 

A bit more, empathy is missing I think. That’s missing. There’s no empathy and there’s no frankness. I’d rather someone be frank with me as to what is happening and honest, that was missing. I felt like they weren’t being honest because if they were, they would tell you exactly what was happening. And you could decide. Other things they could have changed was allowing you to take part in the decisions. Answer the questions you ask and see the same doctor. You see a different doctor every morning, thinking, and who are you? And it got to the point where I had to repeat the same message that I told them yesterday, to the new one, to the new one, to the new one, you feel like you are repeating yourself, when they should have known how long, how many weeks that I was there. Is she, everybody should be singing from the same book and the same hymn sheet, you know. When you tell them, “Well, It should be surely in the notes.” “Oh, it’s not here but could you tell me anyway. I wasn’t here yesterday. So forget about that doctor, you tell me now.” “And who are you?” “I’m the new registrar.” Well, I don’t feel inclined to actually repeat myself again and someone who’s very, very I’m into detail. I was really disappointed I can see where the errors happen because a lot of the medical notes were missing, well nobody bothered to put the notes in or write it down and I found that really frustrating because I kept watch. 
 

Hanna wanted the expert advice of the consultant she saw when she was first admitted to hospital. It was also helpful to talk to her mum about the options available.

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Age at interview: 39
Sex: Female
Age at diagnosis: 37
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So that was on the 16th of February, when I went in to have my normal check. By the 26th, we’re talking about having, delivering the baby early because they didn’t like what was happening to my body. And then, the worst thing was, I was hearing from the young doctors and I didn’t see that female consultant ever again. That annoyed me a little bit because I felt I wasn’t I wasn’t important enough for her to come round again ever since that first visitation, that was it and I felt very annoyed. So on the 26th, I remember a young female doctor that came in to see me. I was not particularly nice to her. I said, “I want to see that consultant. Why is she not here, especially when she told me that we needed to deliver the baby early?” So I demanded to see the consultant and it wasn’t it wasn’t until the 27th, morning of the 27th, she came to see me and I said to her, “I want to hear it from you, what do you, is the best option?” And she said, “The way you are, yes, we need to have this baby delivered and options are either caesarean or we’ll induce you but we prefer the caesarean.” And I said, because of the hidden, I’ve heard about people having caesarean and always people that I know of, like relatives and they’ve never had a good experience with it.

So, when I told my mum, she advised me against it and she said, “Go for natural birth. They’re there, the medical experts to help you and you, they wouldn’t give you those two options if they weren’t safe for the baby to be delivered naturally.” So I said, “I’d rather to have a natural birth.” So they said, “Okay. We’ll wait until the 35th week.”
However, sometimes women could not or did not want to be involved in making decisions about the next steps. Claire said she didn’t have “the headspace to ask questions” at the time. Others were too unwell.

Julie X thought her doctors were good about explaining what was happening to her husband when she became very ill. Partners sometimes also took on a role advocating for the pregnant woman; Stephen was aware he might have to do this and found the acronym of BRAN (Benefits, Risks, Alternatives, Nothing) a useful framework for thinking about whether next steps were in the best interests of his wife and their baby.

Trust was really important when it came to doctors and midwives making decisions. Kay was very confident in her doctor and the advice he gave her: “this man knew his stuff and every time he said something, no matter how frightened I was, when he said he was going to be OK I had no reason to doubt that”. 
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