In this powerful and deeply personal written narrative, Samantha Jiri, a medical doctor, gives excerpts from her journalling through her palliative care journey. She shares stories of two patients and their mothers- before and after learning about and applying palliative care principles. Samantha went on to graduate Cum Laude in the Post Graduate Paediatric Palliative Care Diploma (UCT).
A Candid Reflection: The Before
“Forgive them Lord, they know not what they do.” Luke 23:24
Let’s meet Angie and her mother Beulah…
‘If I were to count my entire interaction with you it probably lasted less than 4 hours. We met on three 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. Following this she developed abdominal distension and fever. Her mother, Beulah, brought her in two days later. At that time, she was ill looking in severe respiratory distress and in shock- both aspects were addressed and resolved. She then went on to have seizures with abnormal posturing. It was noted that she had dilated pupils that were sluggishly reactive to light, decerebrate posturing. In light of her history, investigations and in consultation a diagnosis of Hypoxic Ischaemic Encephalopathy was made. Prognosis was deemed poor and she was not a candidate for escalation. Thereafter she remained comatose, with 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 most likely 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 dietician, speech therapists, physio and occupational therapists and the social worker. Every day the entries began the same
‘Poor prognosis- severe encephalopathy.
Not for escalation of care.
Not for active resuscitation’.
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 explained that we would leave the tube in so this would not happen again. I moved on to the next patient in the high care. Although 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. 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. Covid crisis. I would be assisted by a sister from adult high care and TB Clinic. I had an adolescent clinic from mid-morning until the afternoon when I would 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. Beulah did not know this but she really should not have to. She and her daughter had been moved out of high care the night before as two critically ill babies had needed the space. By the time I reach them I have already been called to say, ‘6 patients waiting at HAST Dokotela.’
‘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 and I started up FDP- a blood product to help get her stable. 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 had gotten 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?). I did not take sharing this with you lightly, I hope you know. I gave you an opportunity to ask questions, but you remained silent. I did not probe further. You gave consent for blood to be given. And still I began the entry with
‘Poor prognosis- severe encephalopathy.
Not for escalation of care.
Not for active resuscitation’.
I moved on, telling myself I would come back to talk to you later on in the day. I did see you later that day and confirmed the blood was running, that her temperature and perfusion had improved.
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.
‘You continued to be very quiet during interactions with staff, always looking distant and as if you were not really hearing what was said, you only highlighted things like ‘she moved her fingers 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. Because the various cadres looking after your daughter did not initially discuss with each other beyond the notes in her file you at times received mixed messages. This was thankfully later addressed. However, your confusion and possible heartache could have been avoided by us following a multi-disciplinary TEAM approach with your input much earlier. 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.’
‘I look back on those encounters with you, as well as your entire hospital experience with deep regret and a good measure of shame. They were opportunities to sit with you and discuss the rest of your daughter’s life but also discuss her dying. The words ‘just because you can does not mean you should’ play in my head a lot.
In the moment when I found your daughter’s blood level so very low and her body so cold should I just have focused on warming her up and ensuring her comfort? I should have asked you what your wishes were and worked together with you instead of just informing you what my plan of action was.
If I had only paused and sat with you- mindfully held space with you– how different your experience may have been?
From the moment of diagnosis of the severe brain injury both a palliative care plan and an advanced care plan would have made a world of difference- had I known they existed. I know now that 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 I also
- Did not know many things 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. Family support was included later in your admission but would have been beneficial from the beginning.
- 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- feeding, changing nappies. I did not take the opportunities to affirm life.
- Did nothing to assure you that Angie was not in pain, and did not do enough to manage her pain, did nothing to look for her pain. An opportunity for relief of total suffering missed.
- Only managed the physical symptoms, and even then, not always very well, and paid no attention to her spirit, her soul, her emotions, and none to yours either. From the time Angie was determined to have a life-limiting condition an extra layer of HOLISTIC support should have been provided.
- 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 could have and should have done better. I know better now. 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 at that time, you suffered more than you should have, and I imagine, so did Angie. For that I will be forever sorry.”
Continuing in knowledge
I encountered this mother and child pair 3 months into my palliative care training.
Sudden, unexpected loss
Dr Meiring often tells the story of how her palliative care story began- of how she, after a long night of trying to keep a baby alive, said to herself ‘there must be a better way’, her ‘aha moment’. I recalled this story as it became clear that a baby in front of me was dying. In less than 24 hours of interaction with this child’s mother I travelled through panic, calm, hope, to hopelessness. It was in that feeling of hopelessness that I thought ‘there is always something to be done- I just need to refocus.’ Could I provide a soft landing for what was an imminent death?
In all levels of care an acute death is something we will all likely encounter. I think I believed paediatric palliative care to be focused on children who had long-term, chronic illnesses where family meetings could be conducted over time, plans could be made at a good and steady pace. However, the principles of care can apply both acutely and in long term illnesses.
Let’s meet Simthandile and Khethiwe, her mother…
Simthandile was only 4 days old. She had been admitted the night before I came onto the ward. She had been diagnosed as having neonatal sepsis with a severe omphalitis. Her mother and grandmother had brought her in as she was dyspnoeic, refusing to feed, and lethargic. She was admitted in the neonatal section of the paediatric ward, ironically in the same bed as Angie (previous case). She had been handed over to me but the full picture of how unwell she was really caught me off guard and for a second panic crept in to be immediately replaced by the calm needed to fully assess her. Because of the bad state I found her in I promptly introduced myself to Khethiwe and explained to her calmly that her daughter was quite unwell and I was going to work on getting her better now but would sit down and talk to her as soon as Simthandile was stable.
Simthandile was hypoxic despite oxygen therapy and in severe respiratory distress, she was also markedly pale and poorly perfused but responded to a fluid bolus. I worked with the nurse to move her to the high care unit. As I was preparing to take blood, I asked the nurse to show me results from the admission so I could pull any other bloods at the same time, to avoid pricking the baby again. In my haste I neglected to be mindful of Simthandile’s pain. Swaddling, giving buccal sucrose, applying topical lidocaine may have been options.
I immediately discussed her with our referral centre as it was apparent she was going to need respiratory support. Our paediatric unit does not have facilities for neonatal ventilation, but our nursery has a CPAP machine, reserved for inborn neonates. The referral hospital had no ICU or high care beds available either in the paeds unit or their nursery. A baby was expected to be transferred from their hospital to the tertiary one, but it was unclear how soon that would happen (some hope). We made a decision to use our nursery CPAP for this baby.
Whilst awaiting it to come I gave mom a brief update on what was going on. The flurry of activity had clearly shaken her. Once we had baby all set up and stable, I asked Khethiwe and the nurse I was working with to sit down with me in the matron’s office so we could talk. The nurse and I position the chairs so the three of us could sit in a small circle without the desk between us. I introduced myself to her again and asked the nurse to do the same. I asked her name, what she preferred to be called and age (21) and confirmed she was Simthandile’s mother. Before addressing anything else I assured her that her daughter was now stable and out of immediate danger which is why we could sit and now talk. She notably relaxed. I then asked her to tell me about her pregnancy, delivery and what had brought her to the hospital. Being given the opportunity to share her story without judgement seemed to put her more at ease.
Her pregnancy had been uneventful but she had been unable to get to the hospital at the time of delivery and had delivered at home, assisted by her mother, Lungile. The cord had been cut with a razor blade- she was not sure if it was an unused one, Simthandile had cried and suckled well on the first day. She eventually got transport to go to the local clinic later that day where baby was examined, no issues detected, the cord was aseptically cut and she received a stat dose of anti-tetanus toxoid and was allowed home. A day later Simthandile’s condition took a bad turn, with her cord changing color. Khethiwe explained that they did not come to the hospital straight away as she and her mother thought it was not too much to worry about. They did not seek traditional help as they are both Christians. She had left a 3-year-old son at home who was in the care of her mother.
It was at this point I asked if she knew anything about what was wrong with Simthandile, to which she responded that she did not, except what I told her a few minutes earlier. I asked if she would want to know a fuller picture, following her agreement I explained that Simthandile appeared to have an infection which may have started from her cord but now seemed to have spread to her blood, she was weak and not breathing well and for that reason had to be placed on a machine to help her breathe. Pause.
I had probably said too much all at once as I was still learning to WPC (warn, pause, check) my communication. Khethiwe looked down and when she looked up again, I confirmed if she would like me to continue, she said I could. I went back to explain about the breathing machine so she would not be very frightened by it when she saw her tiny baby on it, and that this would hopefully make breathing easier for Simthandile. I also explained that the senior doctor at the bigger hospital was helping me treat her daughter; if and when they could take her for higher care, they would notify us straight away. That was the hope. Pause.
This pause was not just for Khethiwe but also for me to pause and gather myself.
At this point I felt overwhelmed by what happened to this young mother- because of how far she lived she was not able to get to the hospital in time to have a safe delivery, because she was not aware of danger signs there had been a delay in seeking help. And now because there were no beds immediately available the care her daughter needed would be delayed or possibly denied her. Once I had gathered myself, I continued.
We asked if there was anyone, she would like us to contact, the answer was ‘no’ at this point because the person with the phone in her mother’s vicinity was travelling and would not be reachable until later. I reminded Khethiwe that she had mentioned they are Christian, I enquired if there were any ceremonies or any prayers she would want to pray over her child.
There were no ceremonies but wondered if it would be ok to pray at the bedside. The nurse I was with smiled softly and said ‘yes siyamukela khonokho.’ Translated: we gladly welcome that.
As the day progressed Simthandile condition which had initially stabilised began to deteriorate. Her perfusion remained poor despite receiving fluid boluses, FDP, a blood transfusion and being on an adrenaline infusion. And still we had no beds at other hospitals, and none was likely to be available until the mid-morning the next day. It became apparent that Simthandile would not make it that long. I thought about Beulah and how I had not communicated or worked to prepare her better for her daughter’s death and it caused me to pause. To consider how to approach the next few hours with this mother and her daughter.
The situation had been predicted by our regional consultant on call ‘but if it looks like she’s dying, saturations dropping no response to inotropes and we still don’t have space – palliate.’ Hopelessness set in. But was it really a hopeless situation?
Refocus, Samantha.
I was grateful to be on call that night, and that of all the cases I saw that night none required as intensive care as Simthandile. The timing for this support was not the most ideal but given the situation we were in there would be no better time to enrich Khethiwe’s last moments with her daughter.
Had we prepared Khethiwe for this? I wondered. Our communication throughout the day had been clear that the child was very sick and we were hopeful that she would be transferred for ventilation but there was a possibility that this would not happen. Looking at this from the palliative care perspective she was an ACT Class 1(life is threatened, not necessarily limited. There is potential for cure) but in less than 12 hours would then become an ACT Class 3 (relentless deterioration). This thought made me realise somewhere else where I have missed the mark. In cases where transfer does occur, conversations around possible outcomes should still begin.
Palliation should not be simply reserved for when there are obvious signs of dying. We tend to give mothers this hope that they are going to the big hospital, with smarter higher-level doctors than us, even carried away by helicopter and so the child will be fine. Almost as if now that their care has been escalated it automatically means their child will survive and I have failed to prepare caregivers appropriately.
However, communicating in a manner that does not provide secondary and ongoing trauma is also important. So, it becomes important to not make death the primary thing but make the provision of support the primary goal. Seeking out how the families would want that support and providing it.
Due to the deterioration, non-responsiveness, no benefit on CPAP and that escalation of care was not likely to happen, in consultation care was shifted to purely palliative. I discussed with the nurse who was now on night duty in light of the above and knowing that Khethiwe would not be able to hold her if she remained on CPAP, also having seen the discomfort of CPAP we decided to take her off for comfort care if her mother was also in agreement with it. The nurse silenced the machine alarms at this point. I then explained that we needed to have a very difficult conversation with Khethiwe but to try and support her as best we could. Further attempts to reach her mother had been fruitless.
Before asking Khethiwe to come join us I went to an empty cubicle and said a prayer and did breathing exercises I normally do after work to help me focus on being at home and leave work stress behind. In this case I did it to centre myself, acknowledge the weight of what we were about to say to this mother and focus fully on her and Simthandile.
We all entered the room. I began by asking her how she thought Simthandile was doing. ‘I’m not sure doctor but she does not look better.’ Pause. I told her she was right that her child was not improving, and that what I had to tell her now would not be good news. I could see her physically brace herself for the news, she looked me right in the eye, which surprised me, but I continued. ‘Not only is she not improving she is actually getting worse ‘I’m sorry to tell you this but at this point it looks like she will soon die.’ Pause. I looked down. She wept quietly. The nurse handed her some tissue and used one herself as she was also tearing.
After some time, I continued and said as the machine was no longer helping Simthandile and more likely only causing discomfort we thought it best to take her off of it so she would have an opportunity to hold her daughter. I assured her that taking her off the machine would not cause her to die faster only more comfortably. At this point I asked her to tell me what I had said so far as I was not sure she was still understanding or attending. She was able to say back in her own words all that I had shared with her. And she closed off by saying she would very much love to hold her baby again and she agreed for us to proceed with the removal.
It was altogether too sudden. Too much for anyone to bear alone and one so young.
She asked if she could feed the baby once she was off the machine, I said she could lay her on her breast and hold her close but it was unlikely that she would be able to feed or that she was hungry at this point.
Me: Would you like to be present when we take her off the machine?
Khethiwe: Yes doctor. Will it be painful?
Internally cringing that I had not thought to provide pharmacologic relief of pain or the discomfort I had noted.
Me: That’s good that you bring that up. We will give her something to make her comfortable and be with you when you’re holding her so we can give more medication if it’s necessary. Even though she probably won’t breastfeed, she will feel the goodness of you next to her. So don’t be afraid when holding her.
Khethiwe: Thank you (to me). Ngyabonga (to the nurse)
Me: Khethiwe, I am so sorry this has happened.
Pause
I then told her we would move the baby back to the cubicle she had been in earlier today which was now empty thankfully. So Khethiwe would have time alone with her if she wished to. Sadly, we had still been unable to reach her mother or an alternative relative. After moving Simthandile the nurse gave a low dose of morphine as she seemed agitated. I then asked Khethiwe to come in about 5 minutes later and gently disconnected Simthandile from the CPAP.
Two things I wish I had done at this point
- A more thorough pain assessment using NIPS in this case. Not just in this moment but throughout the day and actually discussed with the consultant what pain control measures I could employ if I was not certain
- Discussed memory work – this still makes me sad. I wish I had asked if she had pictures of her daughter. If she wanted to take some, if she would have liked for us to make footprints at some point in time during the day.
Khethiwe came in and held onto Simthandile very tenderly and placed her in a skin-to-skin position. You could see Simthandile’s body relax into her mother’s, and her breathing get slower. We gave them some privacy. I could hear Khethiwe praying softly in her daughter’s ear and crying. Over the next few hours Simthandile gradually became bradycardic until her heart eventually stopped. Simthandile died in the early hours of her fifth day of life in her mother’s arms. Khethiwe may have sensed her daughter’s body become completely limp and began to wail inconsolably. The nurse I was with handed her tissues and allowed her to grieve as she needed to. We then left her alone with Simthandile for a time with someone close by at the door. I certified her when Khethiwe had laid her body back under the warmer. One of our staff nurses stayed with her through the night.
Her mother was only reached at 5am that day. She notified the baby’s father who was away at work in Johannesburg and would arrive later that day. I unfortunately did not see her or the father but when they returned two days later Lungile (Khethiwe’s mother) held my arm firmly and said, ‘Thank you.’ Khethiwe then said (translated)
‘I am very grateful for you and the nurses for doing everything you could to save Simthandile. And thank you for talking to me and sitting with me when my baby was dying.’
Following this we linked her and Lungile with our social worker who assisted where needed with funeral arrangements and provision of food parcels at the burial. A follow-up phone call at 6 weeks to Khethiwe revealed although she was still struggling, she had good support from her mother and was still walking in her belief in God. The nurse I was with offered that she could come in and have a talk with us, and debrief, but she declined. I gave her a way to reach us if she changed her mind later.
In going through this and later journalling about it, it really hit home that communication in palliative care, in medicine really, is essential to get right. How we communicate in moments from a life-threatening/limiting diagnosis to death will forever be etched in the hearts of families. The way we communicate to parents and support them can have profound impact. The saying that ‘a mother knows best’ is not far from truth in that value can be brought about when collaborating with families rather than treating them as intruders on our job and alienating them in their experience. The soft landing can be provided when parents (and children) realise they are partners even in the acute, short-term encounters.
I hope this helps us to do better.