Decision-making and relationships with medical professionals during hospital stays
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”. 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 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). 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”. 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. 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”.