Dear Dr X
I suspect it might have been another routine appointment for you. For us, it was a day when our world fell apart. A day when we received news that no parent ever wants to hear. It is doubtful that you would even remember us amongst all the families you must see on a daily basis. I know I will always remember you though, and the way in which you told us that there was almost no hope that our daughter would be suitable for the heart surgery she would need in order to survive.
I remember being shown into the scan room, lying on the bed and the silence in the room as the sonographer scanned me. There were no reassuring words, no comments about what was being seen on the screen. You wandered over from your desk a couple of times to look at the screen, muttering inaudibly to your colleague before returning to your desk. I knew it would be explained afterwards. We’d been warned at a previous scan that the doctors would talk amongst themselves during the scan and explain their findings afterwards.
I assume you had decided we were familiar with this process as other than being asked to get up on the bed and expose my bump so the scan could take place, nothing had been said to me or my husband. From the moment the scan started, I think I had ceased to be a person. I was just a bump. At least that’s how I felt at the time.
The scan over, you calmly explained that our daughter’s heart defect was so severe at this stage that she was highly unlikely to be a candidate for surgery after she was born. You told us that if you were seeing her anatomy in a newborn you would be advising against surgery. Your next words shocked me to the core:
“I assume you’re intending to terminate.”
Vehemently I shook my head and told you no. I felt so strongly that it was not for me to decide when my daughter’s life would end. I had felt her moving, felt so much love for her already. Even if there was no hope that she would survive for long after birth, I could not choose to end her life myself. In amongst my devastation, I felt angry that you had made that assumption. To offer it as an option was one thing, to assume it was our intention was quite another.
You looked a bit taken aback by my response, but proceeded to tell us that our child would be offered compassionate care. She would probably only live for a few hours. You hesitated and then, in a dismissive tone, mentioned the fetal surgery that Boston Children’s Hospital carried out. You didn’t think it would be suitable and it was a bit radical. However, you felt you should mention it for completeness. I thank God fervently that you did feel prompted to mention it though. That throwaway comment led us to investigate the option further. We were later offered the fetal surgery that gave our baby a chance for life and gave us that tiny glimmer of hope.
You apologised for not giving us better news and showed us out into the corridor. You and your colleague wandered off cheerfully chatting away together. We were left in a bare hospital corridor, feeling utterly devastated and trying hard not to break down in amongst all the people passing by. The contrast between your cheery banter as you walked away and our desolation was so very stark.
I understand professional detachment, but there was so little compassion showed that day. We were given no space to take in the news. There wasn’t even a box of tissues on the table as you told us the news which broke our hearts and shattered our world. We were just another couple coming to a clinic appointment. We hadn’t been prepared for such bad news. Both of us had fought to hold ourselves together as you explained the prognosis.
Perhaps that explains the lack of compassion. Did you just see us as calm and stoic rather than being afraid to let such enormous depths of emotion out in front of a stranger? If you’d seen us a few moments later having managed to find the hospital chapel; the only place where we could think of where we could grieve with some degree of privacy, you would have seen just how utterly distraught we were at the news we had been given.
We’ve had many other appointments before and since that one. We’ve had bad news on many of them. Bad news which was always given sympathetically, always with space to absorb. We’ve been given time to ask questions and a few moments of privacy to allow us to cry together. The experience from your clinic appointment that day stands alone.
Several years have passed since that appointment but with reviews of children’s cardiac services and new standards being set, I find myself thinking of it more and more. We transferred our surgical care to a hospital that was prepared to give our daughter a chance. It’s a smaller hospital which currently doesn’t meet the target numbers being proposed and therefore is under threat. If it closes, our care will almost certainly transfer back to your hospital which does meet those numbers.
Your hospital is a good hospital, I know. It saves the lives of so many babies and children. I have a lot of respect for those wonderful doctors and nurses who work there. But, in all honesty, I’m not sure I’d ever want to set foot in it again. My memories of that day are still painful to recall and our experience does not seem to have been a unique one. Others have also told me that they felt their care was very impersonal. I wonder if being a bigger hospital increases the degree of detachment between doctor and patient?
I am sure that you are a good doctor, that you give great care to your patients. But please stop and remember that the person you are treating and their family are human beings with feelings. A little empathy and compassion when giving bad news would go a very long way.
Written in response to this week’s prompt: ‘a letter’
“But please stop and remember that the person you are treating and their family are human beings with feelings and that a little empathy and compassion when giving bad news would go a very long way.”
I completely agree with this.
I am sorry that you were treated in this manner. Hopefully, the right people will get to read this post and think about their ‘bedside manner’. In my own experiences, I have met with many detached doctors, nurses & consultants. Not good enough. Empathy and understanding should be part of the job, always.
Powerful post, well written. X
Thank you. It has been very cathartic to write about it – hopefully if any doctors read it, it might make them think about their approach to giving bad news. Empathy and compassion make a huge difference.
I can only hope that this is a piece of fiction and not based on real-life experience. Although, unfortunately, someone, somewhere would have faced this exact scenario. #theprompt
Sadly not a piece of fiction – this was our experience when I was 22 weeks’ pregnant with my eldest daughter.
What a moving and brave post. I can’t believe that your Doctor could say that, could just assume that! And I am in awe of you and your husband for remaining strong and determined; you have more than been given your reward with your lovely girl.
This is why bedside manner training (for want of a better phrase) should be a compulsory part of every doctor’s training! We can’t leave these things to chance.
Thank you – we have been very lucky and so blessed that Jessica has done so well. Have very mixed feelings about this appointment – there is still a lot of hurt about the lack of compassion but am also very thankful because it made us pursue the fetal surgery. A little more compassion would have made a huge difference and yes, more training would be a good idea.
I know this isn’t a piece of fiction and I’m so sorry you had to go through that. The trouble with careers like ‘doctor’ are that they require scientific minds which do not always come with empathetic personalities – I guess they think that can be left to the nurses. It’s not good enough – there should be some emphasis on people skills somewhere in the years of training surely. I know it’s very different but my manager at work is the same in a way – he knows the systems we use and the work inside out but he’s absolutely rubbish with people and brings morale low sometimes – and it’s such a cop out – if you manage people you need to have some people skills! So glad your little girl survived despite these stark and traumatic experiences you had to go through. Xx
Thank you Sam. I have heard a couple of other people say that this particular doctor’s approach was ‘blunt’ and that was certainly my view too. That said, am sure that he is good at giving medical care even if his people skills are less good and whilst there is still hurt over the lack of compassion (although writing about it has been cathartic), I am thankful that he did mention the fetal surgery that helped give Jessica the chance to survive x
I am sitting here utterly shocked that this doctor said that to you, made that assumption. As you say, offer options, but to assume something so personal is just awful. I am so sorry that you had that experience, at a time when you needed support. I’m glad that subsequent care was more thoughtful, and of course that ultimately Jessica received the intervention that saved her life. I hear such good things about Boston Children’s, in fact I have a friend who works there x Thanks so much for linking to #ThePrompt x
I think that assumption and then being ‘dumped’ in the corridor are still the two things that shocked me most about that appointment. I know that some couples in our shoes would have chosen termination and I would never judge anyone for making that choice – it is an awful thing to be told that your child won’t survive for very long after birth and I could completely understand someone not wanting to continue the pregnancy with that outcome hanging over them but it wasn’t the right choice for us and to have someone assume that that would be our choice stunned us. Boston Children’s Hospital is a wonderful place – am glad we didn’t need to go there but I know of other families who they have given hope to. I am truly thankful that the doctor we saw did mention their work because it gave Jessica a chance but I just wish he had been a little more compassionate.
No-one should ever be made to feel like this Louise, it’s just horrendous. Love that you’ve been kind with your words though – as hard as it must be you know not to take it personally. As you said this doctor tells people bad news every day so has clearly lost the human touch.
All I can say is how wonderful it is that little Jessica is here, living proof that miracles can happen xx #ThePrompt
Thank you Reneé. I am sure there are other families who think this particular doctor is wonderful because he has no doubt helped many children to survive and that is why I don’t want to name and shame – it is more a general point that a little compassion goes a long way when giving awful news. The lack of compassion was very hurtful but it is mixed with the gratitude for him mentioning the option of fetal surgery – we would never have thought to investigate this otherwise so in some ways we owe Jessica’s life to him too. It is such a huge blessing to be able to watch her grow and develop x
I’m so sorry you had to go through that – it must have been so horrendous. Sadly, I think experiences like this are all too common-place. I understand that doctors can’t allow themselves to get emotionally involved and have to maintain some kind of professional distance but there’s a massive difference between that and the cruel thoughtlessness you experienced. Thank you for writing about this so movingly and eloquently…and how wonderful that the doctor was wrong xx
Thanks Siobhan – I can understand professional detachment too but as you say, there is a difference between that and thoughtlessness. The other doctors that have been involved in our care have maintained professional detachment too but managed to be compassionate and caring at the same time. I am very thankful that the doctor we saw that day was proved wrong, but he is to be credited with being part of saving Jessica’s life too despite his lack of people skills – we would never have thought to investigate the option of fetal surgery had this not been mentioned to us that day x
Oh Louise, I just wanted to reach out to the you in that scan room and give you a hug! And also give that Doctor a stern talking to. It was an awful thing to say. I’ve also received bad news in a scan room by a doctor utterly lacking in empathy and it makes the blow so much harder. But you and your husband coped remarkably well and little Jessica is here today – she is testament to your strength and courage (and her own!) This is an amazingly compassionate letter. xxx
Oh bless you Maddy, thank you – virtual hug received! I am so sorry that you have also received bad news in a scan room given in an unsympathetic way – as you say, it does make that blow so much harder. It is amazing how a little compassion can make such a difference. Despite the pain that still lingers from that appointment, there is thankfulness too that that doctor’s words also gave Jessica the chance of life too through the mention of fetal surgery as an option x
My mouth opened wide when I read that sentence the doctor said to you. That would have been enough to make up most people’s minds. You are such a strong person for believing in your body, in your little heart baby’s kicks… I have nothing but admiration for you. Jessica is lucky to have such a good mummy, and that doctor has a thing or two to learn about talking to patients. xxx
Thank you Mel – I am very lucky to be blessed with being a mummy to Jessica. I am sure that this particular doctor is very good at providing medical care but his bedside manner definitely needed improvement! x
This letter made me feel so sad, Louise. Such awful news to have to hear, delivered with a lack of compassion. Did you feed back to the hospital? We had a few such issues with Hugo’s care. I fed back, and to give them their due the hospital said they had not realised it was a problem and are now reviewing how they talk to parents as a result. I’m glad writing the letter is cathartic and that your daughter is ok, but if you haven’t fed back it is worth considering, especially as there is a chance you will need to return to the other hospital. Happy to give advice if you would like/need xxx
Thank you Leigh – I never did feed back to the hospital; at the time we were just dealing with investigating fetal surgery and then getting through the rest of the pregnancy and those early days with Jessica. It is something that I will be mentioning in my feedback as part of the current cardiac review though and perhaps I will look into feeding it back to the hospital more directly as well – may well ask for your advice if I do, thank you for the offer. My feelings about that appointment are very mixed – on the one hand I am eternally grateful to this doctor for mentioning the fetal surgery but the lack of compassion made a very distressing day even harder. Thank you too for sharing my post – hopefully if there are any doctors reading it, it may make them think twice about how they give bad news to their patients x
Louise you are a true inspiration, and your posts always leave me crying. Professional detachment is one thing but people truly need to remember they are dealing with peoples lives! #sundaystars
I do understand the need to remain detached but the other doctors we encountered managed to balance professional detachment with compassion. So sorry to make you cry x
What a sad and terrible experience you had. You just expect all in the medical profession to have compassion – but obviously not. This is moving and touched me so much. You are strong and brave for writing this post. Jess x #sundaystars
Thank you – it was a horrible day but if we hadn’t had that appointment we wouldn’t have pursued the option of fetal surgery so we have much to be thankful for too. The vast majority of the medical staff we have encountered over the past three years have been very compassionate but this one experience stands alone – a little compassion would have made a huge difference x
I can’t believe how clinical the doctor was, that is just terrible and a moment you will never get over. I m so sorry you went through this x
Thank you Sarah – I don’t think I will ever forget that day although writing this has been cathartic. I am thankful that he mentioned the fetal surgery though but a little more compassion would have made such a difference that day.
I would like to say I really can’t believe this could happen to someone but I know from my prompt post how cold our doctors can be. It also reminded me how my own GP was when my numbers didn’t come back good for the downs test with Little E. She wanted to ‘talk’ to me! I knew what she was thinking, I didn’t make an appointment to see her. She did call and I promptly told her there was no way I would be going in THAT direction. I really hope a doctor reads this and it gives them food for thought #ThePrompt
Thanks Jane and I’m sorry that your doctor tried to steer you in that direction too and so glad that all was fine with Little E. Most of the doctors we have encountered have been wonderful but hopefully if there are any reading this it will make them think about how they give bad news.
That just brought tears to my eyes. What a horrible, horrible experience to have to go through. My husband is actually training to be a doctor at the moment as a (very) mature student. He is one of the most caring people I know, but I’m going to share this with him to remind him why that’s so important xx
I am sure your husband would be very compassionate but definitely important to get the message across about how much difference a little compassion can make. It was a very distressing experience and the way it was handled made it more so but the one good thing that came out of it was being able to pursue the fetal surgery which helped save Jessica’s life and prove that doctor wrong x
Reading your post makes me feel shame for my profession. It doesn’t matter that I know I was never like those doctors. It is bad enough knowing they exist. I worked as a paediatrician for 3 yrs before it became unbearable for me. During my time in a tertiary neonatal centre I attended a few births that will stay with me forever. One was a couple in a similar position to you except that the defects their baby had were too enormous for surgery and they had chosen to continue the pregnancy anyway. They baby only lived for a few hours but the couple felt such joy at having that time with the baby they feared would be still born. I felt humbled by their bravery and honoured to be present. I was in awe of the gentle and calm way my registrar explained things to the parents. I felt a bond between the four of us in that room that I will never forget. My reg and I both cried afterwards in the doctors room where nobody could see. I just want you to know that for many of us you are not just another appointment- there are babies and children I met during my three years who have made me the doctor I am today and who I will never forget.
Thank you for your lovely comment Morna – it sounds like you and your registrar explained things so beautifully and helped make that experience a better one for those parents. I have some lovely paediatrician friends who I know are often very affected by the children and families they look after and thankfully this particular experience was an isolated one. I will always be thankful to this particular doctor for his comment that led us to pursue in-utero surgery but wish his bedside manner had been more gentle that day.
Oh Louise. Thank you for reshaping this.
As someone whose children have spent time on SCBU I have seen something similar happen to a parent – that cold detachment, no thought for the bigger picture.
Well done for holding and continuing to believe…… you & your husband should be so proud of yourselves.
Jessica is beautiful and such an example of all your courage.
Thank you so much Donna. That cold detachment made a devastating day that little bit harder. I do try to focus on the one positive that came of it though – that throwaway comment that helped Jessica to survive. She really is my little miracle x