When we know better, we do better

A blog by Dr Samantha Jiri in which, in a beautifully penned and hauntingly honest letter to Angie’s mother, she describes a number of interactions she had with a dying baby and her mother before she truly understood the value of palliative care. 

Before the beginning

‘If I were to count my entire interaction with you it probably lasted less than 4 hours. We met on two consecutive days, days that each came with their own challenges or perhaps those are my excuses. You and your beautiful baby girl, Angie, just a few weeks old, were in a busy paediatrics ward. I was filling in for a doctor who was away and was partially familiar with your daughter’s story. She had been admitted 2 weeks prior at the tender age of 27 days. On Christmas day, no less.’

A brief history on Angie

She had diarrhoea, vomiting and seemed tired at home; she was given an enema of various herbal mutis. She was formula fed. Following this she developed abdominal distension and fever. Her mother brought her in two days later. At that time, she was ill looking in severe respiratory distress and in shock as well as having a distended abdomen. She responded to fluid boluses and oxygen support. A diagnosis of neonatal sepsis was made. With treatment the abdominal distension resolved but two days into her admission she began to have seizures. These initially responded to further medication but a day later the seizures progressed with Angie having abnormal posture. Her blood sugar was normal at the time, as were her electrolytes.  She responded to a phenytoin infusion. It was noted that she had dilated pupils that were sluggishly reactive to light, decerebrate posturing. Again, she was discussed with the referral hospital. A diagnosis of Hypoxic Ischaemic Encephalopathy was made, suggestive of raised intracranial pressure. Her prognosis was deemed poor and she was not a candidate for escalation for management or further investigation.  Thereafter she remained comatose, her pupils fixed and dilated.

‘This news was broken to you by a colleague of mine. That your daughter had suffered severe brain injury, may never fully recover and would very probably die. I do not know how this was broken to you but in later conversations you remembered these words hauntedly. Your baby lived on for several weeks thereafter. She received care from various cadres – including the dietitian, speech therapists, physio and occupational therapists and later the social worker. I cannot consider it a team as there were no coordinated or collaborative effects. Each man working independently of the other. And every day the entries began the same:

Poor prognosis- severe encephalopathy.

Not for escalation of care.

Not for active resuscitation’.

Our first meeting

I met you and your daughter Angie on her 12th day in hospital and I asked how baby was. You told me she hadn’t passed urine in a few days. ‘Nothing at all?’ I queried and you reported that her diapers had been consistently dry. I proceeded to examine your daughter and sure enough her bladder was alarmingly distended and I noticed her heart rate would go up when I touched her.

‘How could this have been missed?’ I wondered to myself. I proceeded to place a tube (catheter) to relieve her and filled a 200mls bags quite promptly. You were very grateful. I moved on to the next patient in the high care. I noted she was in pain and knew emptying her bladder would relieve her but did nothing more for her pain. I also never thought to explain to you why her bladder was so full and she could not pass urine. To pause and take that as an opportunity to discuss what you knew so far, how you felt about all that was happening. That this could be a sign of her approaching end of life. 

We met again the next day – it was a Thursday. None of the nurses who worked in the ward and were on duty had come in on that day. Crisis. I requested a nurse from either the nursery or our paeds outpatient department to come and assist – not possible Dr Jiri, those units are also understaffed. Instead, a nurse from the adult high care unit and another from the TB clinic joined me. This essentially meant I would have to do all the procedures and bloods myself. It was a Thursday – a day I have to interrupt my round once I am done with high care and new admissions because I have an adolescent clinic from mid-morning until the afternoon, when I come back to complete the rest of the round. I think about this and foresee it being a difficult and long day ahead but I can push through. Angie’s mother did not know this but she really should not have to. She and her daughter were moved out of high care the night before as two critically ill babies had needed the space. I saw them at about 1100 by then I had received the Thursday am call ‘Dokotela you have 6 patients in HAST’. ‘Please sister may you see the ones you can.’ The nurse from the adult high care unit had to leave to give iv drugs.

When I got to you, I found Angie markedly pale, her body perishingly cold and in shock- a rapid Hb told me her haemoglobin level had fallen to 5. Her drip had infiltrated and needed to be replaced. I quickly attended that whilst working to rewarm her. I ordered emergency blood for her, after an initial bolus of normal saline (a fast drip) I started up FDP- a blood product to help get her stable.

“I did not pause to think or explain to you what was happening.”

Again, I did not pause to think or explain to you what was happening. I did not pause to think whether this was an appropriate use of resources, in light of Angie’s condition was I doing the right thing for everyone transfusing blood and blood products?

Whilst awaiting the blood it was at this point that I sat down with you a few paces away from your baby’s bed. I told you that your baby’s condition was worse, and it seemed like she was dying and I was not sure she would make it through the day. But we would try everything we could to get her through. Was this me treating myself and a bunch of numbers and not treating the whole person and her family? You did not respond. You asked no questions and I did not probe further. You remained silent. I did not check what you had understood and only asked if you had. And still I began the entry with:

‘Poor prognosis- severe encephalopathy.
Not for escalation of care.
Not for active resuscitation’.

I promptly moved on, telling myself I would come back to talk to you later on in the day. I saw you later that day to check the transfusion was running.

The following day Angie lived on. I asked how she was doing, you mentioned that she was warmer today and looked better than she had yesterday. Beyond that you did not say much else. I told you that that was good but her condition still remained poor. You retreated back to silence. I hoped to come back and talk to you further but never got the chance to. That was the last time I saw you and Angie.’

 Baby Angie lived on for a further 3 weeks. During this time daily the entry continued to read:

Severe Encephalopathy
Poor prognosis
Not for escalation or active resuscitation
Ongoing counselling for mother

However, Baby Angie was transfused further, continued on iv antibiotics, and NGT feeds despite vomiting persistently after feeds.

Mixed messages

You continued to be very quiet during interactions with doctors, always looking distant and as if you were not really hearing what was said, you only highlighted things like ‘she moved her hand today’ ‘I don’t think she is getting enough feeds’. You sat at her bedside – I am not sure if you ever had a chance to hold her tiny body from the time she was admitted until she died – to hold her fully. At some point you demanded to go home – as all the doctors had told you she was dying, what was the point of her being in hospital if not receiving any more help. Our social worker agreed with you that the child should be allowed home but on later discussion with the doctor managing you at the time it came out that Angie was still on oxygen  and attempts to wean her had not been successful. The physiotherapists also gave you hope that she was getting better, in contradiction to what the doctors had said. You were getting mixed messages all around.

I was told you initially refused to meet with the social worker but eventually your mother was called in once you had started requesting to be discharged. Your mother reasoned with you and became a voice that registered with you about your daughter’s condition.

Missed opportunities

I look back on those two encounters with you, as well as your entire hospital experience, with deep regret. They were opportunities to sit with you and discuss the rest of your daughter’s life but also discuss her dying. To have your mother come in, or other family members be a support to you. Instead, I acknowledged the signs that she was dying but actively worked to prolong death. The words ‘just because you can does not mean you should’ play in my head a lot about this and I wonder whether if I had taken the time to sit aside with you and your loved ones to explain why certain things were happening and what they meant, whether in the moment when I found your daughter’s blood level so very low and her body so cold whether I should have just focused on warming her up and ensuring her comfort?  I should have asked you what your wishes were instead of just informing you what my plan of action was. If I had only paused and sat with you- unrushed, empathetic, kind. How different your experience may have been?

“…but what weighs most heavily on me is how I communicated with you.
I told you probably the most significant news you will ever hear in your life.”

An advance care plan would have made a world of difference

From the moment of diagnosis of the severe brain injury both a palliative care plan and an advanced care plan (had I known such a thing existed) would have made a world of difference. These are plans that would have helped everyone caring for you and Angie to know how to approach these final days. These plans would have been made with your inputs as you were meant to be an integral part of the team caring for Angie. But I knew so little then and I did not try to know more about you. But what weighs most heavily on me is how I communicated with you. I told you probably the most significant news you will ever hear in your life. Although I knew the gravity of the news I was sharing and approached it gently (in my opinion) I also…

  • Did not know a thing about you. How many other children you had, how old you were, why you named your daughter what you named her, who your social support was, what your sources of strength would be in this incredibly hard time. As I said I was only ‘partially familiar’ with your daughter’s story.
  • Did not listen to your silences. I did not take them as signals to words you were unable to express. I did not pay attention to what you DID talk about, your desire to simply mother your child.
  • Did nothing to assure you that Angie was not in pain, and did nothing to manage her pain, did nothing to look for her pain
  • Only managed the physical symptoms, and even then, not very well, and paid no attention at all to her spirit, her soul, her emotions, and none to yours either.
  • Did not consider the timing, the setting of my sharing this bad news.
  • Did nothing to make sure the team around you was aware of this dire prognosis and could work together on a plan. I am reluctant to refer to us as a ‘multi-disciplinary team’ as there was not evidence of teamwork

I could have and should have done better. When considering the principles of palliative care, it seems so obvious that this is the way we should practice but for so long I have missed this. And because of my lack of empathy, knowledge and time – you suffered, and I imagine so did Angie. For that I will be forever sorry.’

About the author

Dr Samantha Jiri is……