Language Matters: Health Communication and Baby Loss

Being in a healthcare environment – whether that be a GP’s surgery or a hospital – can be a hugely disempowering experience. You are likely to feel especially disempowered when you receive bad news – your head spinning, struggling to take in usually complex information. Then, more than ever healthcare professionals of all disciplines need to reflect that each patient is an individual, with their own experiences, values, hopes and fears.

Professionals need to be able to listen effectively, which includes reflecting back what a patient has said to check their understanding, and to make sure they understand a patient’s views.

My son Hugo was born 16 weeks prematurely because I had the life-threatening pregnancy conditions HELLP syndrome and pre-eclampsia. My beautiful boy fought so hard, but died in my arms at the age of 35 days.

Everything possible was done to save Hugo’s life. Sadly, he was too small, and too premature.

There were, however, areas of both mine and Hugo’s care that could have been better. These issues were around communication – there were occasions where stresses could have been avoided if there had been better interaction between staff, or if we had been provided with more suitable written information.

I’m proud to be the #MatExp language champion. Effective language and communication underpins so much, and even a few thoughtless words can cause enduring hurt.

A huge thank you is owed to everyone who shared this post asking parents to get in touch about their own communication experiences around baby loss. An even greater debt of gratitude is owed to those who got in touch to share their experiences – good and bad.

It was interesting that the bad experiences reflected what I suspected – they are focused around failing to reflect that each patient is an individual, with their own hopes and dreams. The incidences of good communication are heartening.

I will take the poor first, so we can end on a positive note with the good.

One mother had a medical termination because her baby was diagnosed with a condition that meant they sadly would not live. I was appalled at what the mum had to say:

We were ushered in to see a male consultant. He obviously did not have adequate time to spend with us. Everything he said felt like one more thing he had to tick off his to do list. His comment: “at this point, I have to say that I’m sorry for your loss” was the least genuine and sympathetic expression I have ever heard in my life. He then followed this by referring to our baby, OUR BABY, as the “retained product of conception” and the loss of our baby, THE LOSS, as “the event”. He sickened me!

Another mum said:

…we had decided to have an amnio. We explained this to the Community Midwife (whose first words as we walked in was ‘oh this will be an easy appointment’….how little she knew!) Her response? ‘But how would you feel if you lost it and nothing was wrong’ said in a very judgemental way. As if we had not consider the risks…..I left the appointment gobsmacked she could be so insensitive and was so upset, I sobbed all the way home.

A woman who had a miscarriage said:

He then flippantly answered my questions in a nonsensical fashion. “It would hurt no more than a period” (I found labour easier, was offered pethidine for the pain all whilst being physically sick). “I wouldn’t need to stay the night” (ummm…I did…. “I wouldn’t bleed much” (not true). And my personal favourite: “no, you don’t need any medication now. Go home and just turn up at any point on Friday and we’ll deal with you.” (15 minutes later and in a taxi on our way home I noticed numerous missed calls. As we thought, I had needed to take the first of my tablets and was asked to return to the hospital as soon as possible.)

The two examples around my own experience include when discussing Hugo’s end of life, in my distress I cried how guilty I felt. The consultant said:

All mothers feel guilty.

That may be so – no mother of a premature baby, or a baby that dies for whatever reason is at fault. Knowing that does not diminish our sense of guilt, and that comment felt very dismissive. I wanted to talk about why I felt guilty, and be listened to.

The other example relates to a midwife from my local hospital phoning me the day after Hugo died. In a cheerful voice, she asked how I was. I replied that Hugo had died the previous evening. It was evident she had not heard me, because continuing in that cheerful voice she said “Oh ok, I understand you are at home now, would you like a visit?” Even if Hugo had not died, the tone and content of the call was inappropriate. Hugo would have been 29 weeks at that stage and while the unit that cared for him is excellent, there is no way he would have been home by that stage. It seemed to be a failure of checking the notes properly.

These are all examples of health care staff using jargon, and impersonal medical terminology. I am sure (and hope) these staff did not intend to be impersonal or insensitive. I am sure (and hope) these staff simply failed to put themselves in these women’s shoes, to consider how they were feeling at such a sad and difficult time, and to offer empathy. In the example of the midwife who phoned me, she needed to have used a different tone to the one she would commonly use with the happy events of mums at home with their healthy babies.

Effective communication is something I am passionate about, for the benefit of patients – I have worked in the profession within the NHS for several years.

Thankfully, we do have positive examples of communication to talk about.

The woman who had a miscarriage gave this emotional account:

The ward matron ushered us into her office and apologised profusely. She gave me my tablet and then offered to answer honestly any questions we had. We went over everything again but this time we received compassionate and truthful answers. “Yes, it would hurt lots but you will be offered pain relief”. “You will need to stay the night”. “It will be hard but we will be here to help you get through it”.

In the digital age, most of us will take to Google to explore our diagnosis and prognosis to find out more. Of course, while the internet has many useful, trustworthy sites, there are many that are complete rubbish (this is true of every condition, not just baby loss).

As one mum said about her baby’s diagnosis

Probably the worst thing I did was google the condition when I got home.

I found the same about HELLP syndrome – it is so rare, there is little information about it, and much of what I read was terrifying – not helpful to my emotional recovery.

Patients need to be guided towards trustworthy sites. I was heartened to read that as the result of the involvement of a bereaved mum, one hospital’s website has “information specifically about fetal abnormalities as well as details of the team of people who will be looking after them. When they leave the hospital after diagnosis they are given the website address and the number of a counsellor so they can look at it when the shock has worn off”.  The website also has some links to recommended forums. 

Happily, I do have examples of better communication of my own to share: consultants (both obstetric and neonatal) listening to me, and patiently answering my questions without patronising being an important one. Vitally, I have found the majority willing to listen to and take on board my feedback, and seek to reflect on their practice and make changes were appropriate.

That is heartening progress, for the benefit of other women during the heartbreaking time of losing a precious baby.

Language matters, always.

8 thoughts on “Language Matters: Health Communication and Baby Loss

  1. staceytangerineowlproject says:

    You are so absolutely right. Usually not ill-intentioned, but STILL vitally important with resounding effects after leaving the hospital. The human mind cannot digest so much in such a short time span when it alters our world. Reflecting as we process on these comments made, and lingering on them (because we do) forces that perception of those we have been in communication with through the entire experience will then multiply so much the positive or negative of the overall experience.
    I hope that all health care providers are reading this and making an active effort to watch their words, on the busiest of days, the slowest of days, each and every day. Always. Its something that I need to also remind myself. Thanks for writing this Leigh so glad you are continuing to connect with other mothers and doing such important advocacy in your writing and your actions!

    Like

  2. Mrs H says:

    Leigh, thank you for writing this post. Communication and sensitivity is so important in these situations. The way I was spoken to by the consultant after I miscarried sickened me. I didn’t realise anyone could be so lacking in compassion. Thank you for sharing my story in a beautiful and honest way. I hope this campaign changes how medical professionals communicate to parents who face baby loss. Hugs Mrs H xxxx

    Like

  3. Tara says:

    Such an important post (and campaign), Leigh. I’m proud to have shared my experiences with you because hopefully it might actually mean positive change – plus it feels like yet another way my boy has left a mark on this world. Thanks for taking the time to do it, I know it can’t have been easy.

    Like

  4. frankieslegacy says:

    Leigh, I could NOT agree with you more, language matters a lot in healthcare, and especially so with bad news relating to babies and pregnancy. Here are my experiences, this might be a long post, so bear with me:

    I was asked to have a scan in addition to my 20 week one as apparently the female sonographer couldn’t get a good look at Frankie’s hands and face, so when I was 23 weeks pregnant I returned to the Worcestershire Royal Hospital for this extra scan. This time it was a male sonographer, and naturally Russ and I were really excited to see Frankie on the screen again. Everything started off fine, we were beaming away when we saw him on the screen and then the sonographer said out of the blue and very matter of factly, “I can see an abnormality”. We both froze, then the sonographer said, “Oh there it is, I see it. It’s a cleft. And it is a very severe cleft too.” He then went on to say, “Do you know what a cleft is?” but at this point we were dumbstruck and he continued, “It is like the pictures you see of children in the papers in third world countries who’s lips are deformed and their teeth grow in the wrong places.” Of course I had seen these pictures and I was hysterical, I knew what a cleft was but I didn’t know anything about it. I googled it when I got home, and I wish I hadn’t, although I did find the Cleft Lip And Palate Association who were brilliant.

    The following week at Birmingham Women’s Hospital after a scan to confirm the diagnosis of cleft lip and palate the female consultant we saw very matter of factly said, “I can arrange a termination for you as he has as cleft lip and palate” and went on to explain the most graphic detail the procedure for foeticide (as that’s what it would have been at that stage of my pregnancy), and I was absolutely gobsmacked to find out that you can have a termination at any stage of pregnancy for a cleft lip and palate! Of course, there was NO WAY ON EARTH that was going to happen, I was devastated that anyone would even consider that just because their baby wasn’t “perfect” by today’s standards.

    When I found out that Frankie would be born sleeping I have to say the communication there was brilliant. I was also well looked after during induction and his birth, with everything communicated to us in an easy to understand way. The only thing I would say is the timing of us being given a memory box – by its name and definition it is a box to make memories, but we were given it just as we were leaving the hospital the day after Frankie was born, so it was a bit beside the point by then – we had already made all the memories we could.

    The day after I left hospital I was visited by my community midwife who clearly had no clue and no idea how to handle the situation. She was ill at ease and very awkward with me, and I had my brown post natal notes in my hand. She literally grabbed them from me saying, “I’ll take those”, stuffed them in her briefcase and left. I would have loved to have had a copy of them, but it is too late now, and I was too upset and traumatised to speak back.

    Then when the test results from Frankie came in and we were called urgently to see a geneticist because they revealed that Frankie had Chromosome 15 Duplication Syndrome we were bamboozled with science and long, overly complicated words that we didn’t understand. We were also made to feel like we were at school again and treated as if we knew nothing and wouldn’t understand the significance of Frankie’s diagnosis. I did genetics as part of my human biology GCSE and I understood what it would have meant for him had he lived – he would have been incompatible with life and wouldn’t have lived very long.

    Feel free to use these examples in your campaigning for better communication between professionals and patients. I applaud the work you are doing to promote better communication, and I have been thinking about running a campaign for this in my area since Frankie was born sleeping. This blog post will hopefully give me the kick start I need to get it off the ground.

    Keep up the great work with your blog Leigh, you are such an inspiration 🙂 I wish I’d been more like you and dealt with my grief when it happened, rather than work myself into the ground on top of enduring so much else. You’re amazing xxx

    Like

    • Leigh Kendall says:

      This is so sad to read Lisa. What happened with Frankie is tragic, and to have it compounded by insensitivity such as you have described is unacceptable. You have to wonder whether they themselves would like to be given bad news in that way – I would doubt it. Thank you for sharing your experiences, and for your kind comment xxx

      Like

I'd love to know your thoughts...

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s