Terminology and Talking

[Fruli]

I do hope you don't mind me barging in here. I'm a healthcare professional, working mostly in neonates and also in paediatrics.

I'm posting to ask about the words and phrases doctors (in particular) have used when describing death and dying. I've always been struck by how useless my words seem and wonder if/how I can phrase things better. Now, I'm aware it could be that it is simply the news I am breaking, and that I cannot say anything better, though I'm more than aware it can be done badly.

Would any of you be willing to describe how the news was broken to you, and what was said in the immediate aftermath that was helpful, unhelpful, comforting... I mostly work on the neonatal unit, so deal with stillbirth, unsuccessful resuscitation and neonatal deaths, both sudden and (to some degree) expected. Thank you so much.

[Greyhound]

I've had miscarriages, but that doesn't really apply to your question. However, what I would say is:

1. Be clear. Tell them exactly what has happened, using non medical language as far as possible. For example, with my last miscarriage, the doctor (who didn't speak very good English, which added to the confusion) used words like 'blighted ovum' and 'abortion' which was not accurate or helpful terminology and was, in fact, somewhat offensive.
   

1. Don't give false hope. The parents will be looking for any sign of hope, say, with a very premature baby and it might be the case that they will have to let go of that hope.
   

I had to be told, very clearly, that my pregnancy was not viable. Once I heard that, I could accept the news without hoping that the baby might be ok.

1. Don't be afraid to show that you are upset too, it is natural to feel sad when a baby/child dies.
   

1. Be prepared to repeat the information to the parents as it is a lot to take in.
   

1. Try and break the news somewhere private. I believe hospitals have rooms set aside for this kind of event.
   

1. What I find helpful - a nurse told me and dh to keep talking about the loss. That helped a lot.

[Spacefrog35]

Our little boy was in NICU for ten days from when he was born until he died. We were 'gently' prepared that he was very, very poorly by having a quiet sit down with his doctors who explained to us that we were running out of options. It wasn't said at this meeting that he would (or actually that he could) die but they were quite frank about the very limited options that were available to us. I didn't realise at the time but in hindsight it was very helpful for me to have the scene set in this way.

When it came to the day where my husband & I were told there was nothing left that could be done I already knew. I had known that something had changed drastically between 3am when I went to bed & 8am when I went back into the ward. The consultant asked us to join him for a chat outside the ward. We sat down in a room with his nurse, his doctor and the consultant and basically they told us, very gently but with no room for misunderstanding that there was nothing else that could be done. We then spoke quite frankly about how we could proceed, what we would like to do and what the timescales were. Because we understood from very early on how limited the options were this wasn't such a huge shock. I'm a very practical person so we focused on how the life support would be turned off, we discussed a post mortem and we also discussed organ donation. This wouldn't work for every parent but it was what I needed to do to process things and the staff allowed my husband and I to lead the conversations.

I don't think the words used could have made it any better or worse to be honest. I don't even remember the words. What I really appreciated & what I do remember was the sincerity, the compassion and the honesty of the staff who dealt with us. The nurse and doctor both cried, that was fine, it helped to know they cared. The consultant didn't sugar coat his words, he said he didn't know when I asked questions he didn't have the answers to. All the staff were supportive in allowing us to do what we needed to do and we were put under no pressure to make any decisions.

I got to carry my little boy from his incubator to a quiet room. I had to carry him down the main corridor with all the staff & parents about. It sounds like a horrendous thing to have to do but everyone stood, moved to one side & watched us quietly as we passed. I have never, ever felt such pride. It felt like my little boy, and my role as his mum was being acknowledged & I will hold that feeling of pride in my heart for ever.

I know this doesn't quite answer your question per se, but I feel my husband & I were treated incredibly well. It was for me about feeling supported, knowing people cared and being given information promptly, clearly and honestly. It was less about the words and more about the attitude. I felt cared for and supported. It meant the world to me.

You do an incredibly difficult job and have to deal with some unbearable situations but I'm sure you will have made a massive difference to people, just as the staff who cared for my little one did. Thank you x

[BettySwollocksandaCrustyRack]

Spacefrog your post made me cry.

What a wonderful mum you were to your lovely boy, your words about him are so beautiful

[Fruli]

Thank you...you've reassured me I'm not doing anything wrong. There is no easy words to use to say these things, I suppose.

[CritterPants]

My little boy died 20 hours after he was born in January this year. He would have been three months old now. He was full-term and healthy but a couple of hours before he arrived I had either a placental abruption or a rupture in a velamentous and marginal cord insertion - they think probably the latter but aren't sure - and he was deprived of oxygen and lost a lot of blood. Despite an emergency c section, they couldn't save him and his organs started to shut down over the course of a day due to severe brain damage (HIE).

Spacefrog, whose son was due the same month as mine, has been amazingly kind and supportive and I would expect nothing less from her than the dignity and grace that she describes in her post.

What helped - knowing that we had the best care possible and knowing that people did everything they could for our baby and were moved by his very short life. The consultant who delivered him cried, the young midwife on call cried, the nurses cried. As space says, that showed that they cared about him and about us. The consultant came and visited us every day that we were in the hospital, the nurse went off on her break and got us a card and flowers.

Also - being able to say goodbye properly. The consultant also made sure that the hospital chaplain visited us and that a room was cleared that evening so that our parents and us could have a little dedication ceremony for him, where we sang a hymm and read some special psalms while holding him, right after he'd been taken off the ventilator. That was important to me. We were also given the chance to hold him throughout the day - despite me being very drugged up with painkillers, I treasure those hours that my husband and I held him. We both had the rush of love and hormones that any parents would have for their child, even though we were in total shock as I had been 39 weeks 3 pregnant and in the final days of a low risk normal pregnancy - the only thing unusual being that he was IVF as I have PCOS and it took me two years to conceive him.

I don't know if everyone would like the religious ceremony, but the ritual element was very important to me. We also were able to watch as a nurse quietly took off his onesie and nappy and gave him a little bath. I could see that his lips were chapped from the tubes, and it made me feel better to see his body being gently cared for and washed. She asked us if we had a special outfit for him and I was also able to see him and his face without all the tubes and gauze for the first time. I will never forget those moments.

One other thing - photos and videos - at the time, I was so out of it and our families were so flustered that I took photos but not as many as I would have liked. I do have one very wobbly video that I took on my phone. A nurse took one photo of me and my husband holding him and smiling, it's the only one I have of the three of us looking like a family, and it is unimaginably precious to me.

How the news was broken - I didn't realise until quite late on that my baby was going to die. I came round from anaesthetic and asked whether we had a boy or a girl, and started planning dinosaur parties and fire engine rides in my head. Everyone was asking me how I was and I told them I was fine, but worried about the baby and worried he'd be brain damaged. But it was only when I asked the midwife whether not having skin to skin was going to affect breastfeeding and she looked stricken that I realised how serious it was. You don't think it can happen to you - you hear about babies going to the NICU all the time but being fine, and 24 hours before I'd been at my 39 week midwife appointment cheerfully talking about names and doulas. I think they waited until they knew that he wasn't going to make it before telling us, which was fine. It was the head of the NICU who came in and said that our baby had severe perinatal asphyxia, and no reflexes. He never said 'and he's going to die' but it was pretty clear. Although at the time I felt like I literally could not understand the words that were coming out of his mouth, it was such an extreme shock. Your mind goes into lock-down mode to try to protect you from the massive onslaught of pain that is coming.

Things that were unhelpful - the chief midwife (whose patient I was) didn't come and see us for three days, then got our baby's name wrong when she was talking to us, and got the reason for his death wrong so clearly hadn't talked to the consultant, which I thought was unprofessional. She also talked about losing a baby but not under the same circumstances. It's funny - you can tell when people genuinely care and when they don't really empathise. It's less to do with what they say and more with how they say it.

Gosh sorry for the essay. I guess continuing support, knowing you can text or email the medical professionals to answer questions, and kindness. That's the main thing - kindness. And in general, the death of a child brings out the very best in human nature. We have been shown unbelievable kindness since losing our son, including by wonderful MNetters.