Portfolio of Evidence - FINAL

Portfolio of evidence Nadine Puzicha (PZCNAD001)

These diary entries represent my journey of learning through the palliative care diploma. Some lessons have been easy, while others have been hard. The greatest teachers have been my patients and their families, and I am eternally grateful for the impact that they have made on my life and for the lessons that they have unknowingly taught me. I am sad about the times where I may have let these children down by not having the skills or knowledge that I have obtained over the past year. If I knew then what I know now, I may have been able to do better by them. Small steps forward...

Table of Contents 1. Defining palliative care .......................................................................................................1 2. Psychosocial care................................................................................................................3 3. Withholding and withdrawing treatment ..........................................................................6 4. Nausea, vomiting and diarrhoea ........................................................................................7 5. Pain and Morphine misconceptions...................................................................................9 6. Anticipatory grief..............................................................................................................11 7. Religious beliefs ................................................................................................................14 8. Dying at home...................................................................................................................15 9. Cultural beliefs..................................................................................................................17 10. Breaking difficult news..................................................................................................19 11. Feeding at the end of life ..............................................................................................21 12. Multidisciplinary teams.................................................................................................24 13. Transfusions at the end of life ......................................................................................25 14. Ethical issues .................................................................................................................27 15. Spiritual pain .................................................................................................................29 16. Sexuality in adolescence ...............................................................................................31 17. Holding space................................................................................................................33 18. Burnout .........................................................................................................................35 19. Spiritual care .................................................................................................................37 20. List of references...........................................................................................................41

1. DEFINING PALLIATIVE CARE 24 January 2022 I can’t seem to wrap my head around the fact that palliative care should start at diagnosis. I am still stuck in the mindset that palliative care is only initiated once active treatment has failed, and when there is no longer a hope for cure. Why we would need palliative care for a child with a low risk Nephroblastoma, who will get chemotherapy for four weeks, have their tumour removed and go on to live a long and happy life? What I have learnt: “Palliative care“ is not synonymous with “End-of-life care“ which is what I firmly believed it was for a solid 10 years. Palliative care is “the active total care of a child’s body, mind, and spirit.“1 It starts at diagnosis and, irrespective of whether a child is receiving active treatment aimed at their disease, continues until cure, or beyond death. Palliative care includes the support of the family and can be provided at any level between a tertiary care facility and the child’s home. An extensive multidisciplinary approach is required for palliative care to be effective – community resources (even if limited) can be utilised, and the family should always be involved. As a nurse providing palliative care, I should be able to assess and relieve any physical, psychological, or spiritual distress which a child may experience.



2. PSYCHOSOCIAL CARE 25 January 2022 My standard response to “Sista!!! I want to go home!“ for quite a long time now, has been “Even me! I also want to go home, but unfortunately, we’re both stuck here“. Today was my first day back at work after our contact week and I was trying to find an opportunity to practice my communication skills. When Mbali, our new 11-year-old patient told the doctors that she wanted to go home, they said that she would need to be in hospital for at least another three weeks. She then came to tell me the same thing (possibly hoping for a different response) and I managed to stop myself from giving my usual answer but did my best to acknowledge her feelings and her sadness. I tried many times, in different ways to explain why she couldn’t go home, that we only wanted to help her get better, that keeping her in hospital was not an attempt to punish her. Regardless of my patient explanations, the information doesn’t seem to sink in, and she continues to moan about wanting to go. It’s a bit disheartening – I really thought I’d done a decent job of listening and acknowledging her feelings, but it didn’t seem to help. I thought of an idea to help her count down the days. I created a colouring book for her, with as many pictures as the number of days she needed to stay in the ward and added a note explaining that if she colours in one picture a day, when her book is complete, it will be time to go home. I hope that it gives her a little bit of encouragement every time she finishes a picture, knowing that she has one less day to spend in hospital.

It often happens where a child will take my hand, squeeze my wrist, and start tapping on it, mimicking what we do when we are going to insert a drip on them. They then continue their play by pushing their finger along a vein, pretending that it is a needle and often accompany it with a fake scream on my behalf. Towards the end of last year, Penelope asked if she could put a drip up on me! I didn’t think she was serious, so I said she could. Oh boy, I was wrong. She jumped out of bed with new energy and rushed off to the procedure room. I realised it was too late to back out and so, with a few butterflies in my tummy, I went along with it. Nurses are in a unique position to Sometimes the roles need to reverse, assess patient’s psychosocial needs and we can give children a sense of and implement interventions to control. If that means being pricked address them.2 Psychosocial care can with a needle, it’s a small price to pay. be incorporated into the basic care provided by listening, encouraging, providing comforting touch, showing empathy, and just being in the company of your patient. Being emotionally present, requires the nurse to be able to see the patient’s world as they see it, necessitating commitment to truly understanding their views.3 Nurses need to maintain a “purposeless attitude“ – there should be no expectation from the patient (suchas feeling better, being more positive, becoming stronger, or stopping crying) – but “just be“ with the patient without a purpose.



3. WITHHOLDING AND WITHDRAWING TREATMENT 5 June 2017 We got a message on the ward’s Whatsapp group yesterday to say that Lethabo’s tumour isn’t responding to chemotherapy and that she is now for “palliative care“. When I got to work today, I saw that she had been started on Meronem and Vancomycin during the night after a temperature spike, and that they’ve requested routine bloods to be taken on her tomorrow. I don’t understand! Her tumour is growing really quickly. Her little face gets more and more distorted as the days go by and her tracheostomy keeps getting partially blocked. I think an infection, which eventually leads to sepsis wouldn’t be the worst way for her to die. And yet, despite not being able to offer her anymore curative treatment, the doctors have taken away that chance of a “good death“ for this little girl by starting her on antibiotics. I so badly don’t want her to suffocate to death, and I fear that this will be the way she’s going to go one day. I can’t think of a worse way to die – not being able to get enough air into your lungs and the feeling of panic that goes along with it. She isn’t even 2 years old yet, but I know she’s scared. I’ve seen the fear in her eyes when the trachy starts getting obstructed and she’s struggling to breathe. I don’t think it is fair that we’re prolonging her suffering. Healthcare professionals have the obligation to protect life although, where it is in the best interest of the child, treatment may be withheld or withdrawn, even if the outcome thereof is death.4 Management of Lethabo should have been redirected from life-sustaining treatment (LST) to palliative care, which does not constitute withdrawal of care but rather a change in aims and objectives (from cure to care).

4. NAUSEA, VOMITING AND DIARRHOEA 18 September 2022 Francois has been vomiting non-stop for 10 days now. He was started on intravenous Zofran before we gave him chemo last week and Dexamethasone was started shortly after that. After two days of nausea and vomiting, his mom said that she wonders if he doesn’t have a stomach bug and I told her that it’s just chemo nausea and will pass soon enough. I was wrong! We added Metoclopramide about six days ago, but it has honestly had no effect. About three days ago, Francois said that he thinks the anti-emetics are making it worse. He would literally vomit within 10 minutes of the Zofran and Maxalon being administered, so we started stopping them, one at a time – again, with no effect. One sip of water – comes back up. One Panado tablet – comes back up. He is literally not keeping anything down. My heart breaks for this child. Two days ago, he started having diarrhoea as well. He has green fluid coming out both sides. In pure desperation, we inserted a nasogastric tube today, to see if free drainage would stop the vomiting. I hate inserting NG tubes, but I volunteered. I thought I may be gentler than some of the other nurses – I really care about this boy. He gagged and vomited through the process, and I must have scratched the back of his nose because his nostril bled a bit. I felt so guilty, and I apologised afterwards, he just gently put his hand on my arm and looked me in the eye as if to say, “I forgive you“. I cried. We are starting TPN as well – he has lost about 6kg in the last 10 days. His spirit is broken, he doesn’t speak, responds only with nods or shakes of his head or with the use of hand signals, and I haven’t seen his beautiful smile in ages.

Physical, psychosocial, and cognitive distress is faced by patients who experience uncontrolled nausea and vomiting,5 and their quality of life is negatively impacted. These symptoms are also distressing for the family as they worry about dehydration and starvation of the person they love and care about. I believe that adolescents also experience negative psychological effects when having to endure a nasogastric tube. I have seen it time and time again how teenagers withdraw into themselves when they have a tube coming out of their nose. I often wonder if the benefit of supplemental feeds really does outweigh the psychological harm we inflict by inserting nasogastric tubes, more especially if the child is eating. Could we not achieve the same goal (even if it takes longer to get there) with the use of milkshakes such as Frebini?

5. PAIN AND MORPHINE MISCONCEPTIONS 3 February 2022 Danie is suffering. I see the daily updates that his mother posts on Facebook about how much pain he is in, and yet, they refuse to come to the hospital for help. On his last admission, I accompanied them to the MRI department for him to get a scan done. While we were walking, his mom asked me if we will be sending him home with the drops for pain (Valoron – Tilidine) and I told her that the hospital doesn’t issue Valoron as medication to take home, but that we would be able to give him Morphine syrup. She immediately said that “he can’t have morphine – it’s addictive“. I didn’t have a lot of time, but I said that it isn’t addictive in children who have pain and that it works really well. I left it at that. This child is suffering. Our doctors have been doing home visits to check on him and see what else they can do to help him. His mother hasn’t been giving him his morphine but insists on managing his pain with hot water bottles. Yesterday the real problem was revealed. Danie’s late father was a drug addict. I can only imagine the mother’s fear of her son sliding down that same slippery path. I wish she had told us this sooner so that we could counsel her through it and adequately manage Danie’s pain. He doesn’t deserve to suffer because of a misconception which hasn’t been properly explained and dealt with. Addiction is defined as “a chronic neurobiological disease, influenced by environmental, genetic and psychosocial factors“.6 Addiction is a psychological dependence and is characterised by deviant opioid-seeking behaviour7 which is not seen/experienced in patients with true pain, who are receiving therapeutic doses. Addiction to opioids as a result of pain treatment is very rare in people who don’t have a history of addictive disorders.8



6. ANTICIPATORY GRIEF 1 March 2020 Today I was sitting outside at the chapel eating lunch, when I heard the door to outside creak open. I looked up and Marnu’s mom, Annezell was standing there with panic in her eyes, frantically calling me with her hand and saying “Coooooooome!!!“ I jumped up and ran to her, asking what was wrong and she said “Marnu is dying!“ We ran into the ward, and I found him lying on his bed looking at me, with another sister doing his blood pressure. Marnu has been sick. He has Carbapenem-resistant Enterobacterales (CRE) which is life- threatening to a child with Acute Lymphoblastic Leukemia but so far, we have been managing it. Once Annezell had calmed down and was reassured that Marnu was stable, I asked her what happened. She had gone with him to the toilet, he suddenly vomited and then passed out. She told me that she genuinely thought that this was it. He was dead. Just like that. I struggled to understand the fear and panic she was experiencing –I’ve seen children close to death, and Marnu didn’t fit the picture… She insisted that we take him to ICU. I tried to explain that ICU isn’t always better, that unless he needed ventilatory support (which he didn’t at the time), we were able to offer him as much (if not more) care in the ward. I told her that during the Covid Pandemic, she wouldn’t be able to see him very much in ICU, whereas she could stay with him here, but she was adamant. The doctor tried to convince her too, but she really believed he would be ok if he went to ICU. I think the doctor wanted to show her that we were really doing everything possible, so off we went.

It is only recently that I have been able to identify Marnu’s mother’s reaction as anticipatory grief. She was grieving the unavoidable loss of her child, while he was still here. Anticipatory grief is defined as “grief expressed in advance, when a loss is perceived to be threatening or inevitable“.9 Parents experiencing anticipatory grief, go through long periods of uncertainty, with the possibility of their child’s death being ever- present.10 Us as healthcare professionals should encourage parents to talk about the negative thoughts and feelings that they are experiencing with regards to their child’s illness and the possible outcome. It is through talking, that we will be able to identify whether there is a need for additional support, which may help them accept and work through the reality of their potential loss.10 Support groups for parents, where they may share their fears and worries with others who truly understand what they are experiencing, can be invaluable.



7. RELIGIOUS BELIEFS 29 May 2013 Being a Jehovah’s Witness is possibly the most inconvenient “choice“ of religion when you have cancer or a haematological condition. Winnie has sickle cell anaemia and hasn’t been doing well for a couple of days now. Her parents have been counselled multiple times and despite knowing that their daughter is going to die without a blood transfusion, they are refusing point blank. I can’t wrap my head around it. Maybe my faith isn’t very strong. I don’t know if I would be able to put my religious beliefs above the life of my child. Winnie started gasping this morning and there seems to be nothing we can do but watch this 14-year-old girl die right in front of us. While we were doing doctors rounds, we heard hysterical screaming from the other side of the ward. I turned to the doctor, and he said, “Do you think Winnie has just died?“ when suddenly Winnie’s mother and sister came flying around the corner, threw themselves at the doctor’s feet and started begging him to “Please do something! Anything! Give her blood if you must, just save her!!“. That’s when the scramble started. One doctor ran to the blood bank to get blood, two other doctors and two nurses started looking for veins to put up drips so that we had intravenous access when the blood got here. Two units of blood arrived and were put up to run in at the same time, as quickly as they would go. Update 2022: Winnie survived. She is now in her early 20’s attending university, volunteering at a cancer organisation and comes regularly for blood when it’s required. Healthcare providers need to be culturally competent as well as culturally sensitive in order to provide the patient and family with quality care, and this is especially important during the end-of-life stage.11 I think it’s very different to hear that your child is going to die, compared to watching it happen in front of your eyes. We need to be accepting of our patient’s values and religious beliefs, as they are, even when they differ from our own, without trying to change them and without judgement.

8. DYING AT HOME 24 December 2021 Value died today; two days short of 6 weeks since we got her home. On 10 November she was a healthy happy 4-year-old, with one chemo cycle left before she finished her treatment for Pleuropulmonary blastoma. The following day she was struggling to swallow her food and her mother realised that she had hemiplegia on her left side. She went for an urgent CT scan, and they found metastasis in her brain. We were all devastated. On 12 November, I sat holding Value while the doctors broke the news to her mother. They explained that she didn’t have very much time left and asked her where she wanted to be when Value died. She was heartbroken but said that she desperately wanted to get Value home to Zimbabwe so that her grandmother could see her one last time before she died. At this point, Value was floppy and unable to hold her own head up, she cried often but didn’t attempt to communicate in any other way. Flying to Zimbabwe (the quickest way) was not a viable option as there were problems with their “papers“, so a group of loving and caring people jumped in to make their journey home a reality. Money was donated, medications were bought, drivers were arranged, police friends were contacted (on both sides of the border), letters were written, and advice was sought on what to do should Value die en route. Value was going to be part of the next bell-ringing ceremony as she was about to finish treatment. Her mother asked if Value could ring the bell before they left. On 13 November, Value rang the bell and at 13:22 we said our final goodbyes to Value and her mom, and their long journey home begun.

We were all incredibly relieved when they arrived Home safely 27 hours and over 1000km later. By a miracle alone, Value’s condition started to improve – she started talking again and was able to stand up on her own. Her family got nearly six weeks of time with her before she died. I think that was the biggest blessing of all for them. I am so grateful that we were able to grant her mother’s wish and get them home. A good death has been described as “a journey one embarks upon at the end of life, which occurs in comfort, amid a loving presence.“12 Many patients and families place a high value on being at home during the end-of-life stage and death, as they are in familiar surroundings and without the regular disruptions that go with hospital routines.13 Home is where parents are able to maintain control, have a greater sense of freedom14 and privacy, siblings can be included and the best place to try maintain somewhat of a normal family life.15 An expected home death has also shown to reduce long-term problems in bereaved parents and siblings and places less of a financial burden on the family.15 Not all families want their child to die at home. Sometimes, the comfort and loving presence may come from the doctors and nurses who have walked a path with the patient and their family. Some parents may not feel prepared to deal with such a life-changing event on their own, and that is ok. It is important that the parents are given the choice about where they want to be when their child dies, and this choice should be respected, and every effort made to make their wishes reality.

9. CULTURAL BELIEFS 3 April 2013 Andile was supposed to be admitted today for his tumour resection surgery tomorrow. They hadn’t arrived at the hospital by late afternoon, so the social worker called his mom to find out what was wrong and why they hadn’t gotten here. His mother took the call and informed the social worker that Andile didn’t have cancer and that they wouldn’t be coming for surgery and wouldn’t be returning to the hospital again at all - his abdomen was distended not because he had cancer but because he had snakes in his stomach, and they were going to see the traditional healer to kill the snakes. I am so upset with his mother! Rhabdomyosarcoma is not going to respond to traditional medicine and is likely only going to cause renal or liver failure. Andile is going to die!! Culture refers to “the sum total of human life“ and may be defined as those shared beliefs, values, customs, practices, and patterns of social behaviour, and understanding of important life issues that define a particular group or community. The goal of traditional African beliefs is to retore peace and wholeness between the child, God, the ancestors and the living.16 Andile’s mom loves her child and she strongly believes that she is doing the best she can for him. Respect and acceptance are the core concepts of cultural sensitivity and care. I need to be more aware of this and try harder to bring these aspects into my nursing practice when a patient’s culture differs from mine.



10. BREAKING DIFFICULT NEWS 7 September 2022 That was absolutely awful... I just told a mom that her child was going to die. I tried to follow the SPIKES model for breaking difficult news. S - Setting: We went into the duty room where we could close the door and not be interrupted. I got a few chairs and placed them in a circle. I tried to build rapport. I know this mom. We speak often. She is pregnant and her baby was due on 1 September. While we were waiting for Prof to come in to supervise, I pointed to her tummy and said, \"Wasn't this baby meant to be out already?\" She just burst into tears and said, \"But is Keitumetse going to be ok?\" Kat and I just looked at each other... I nearly answered her question with an honest \"no“, but I bit my tongue... I said, \"We're going to tell you everything we know\". P - Perception: Prof came in, I asked what she thought was happening in Keitu's tummy and she said it's getting worse. It got much bigger really quickly. I - Invitation: I didn't ask what or how much she wanted to know. She had already asked if her 3-year-old was going to be ok. I had my own agenda. I wanted her to know the truth and to know everything. K - Knowledge: I gave the warning shot. I told her that unfortunately the news I had to tell her wasn't good. The tumour in his liver is growing, despite him getting chemotherapy. I explained that the latest CT scan showed the tumour had grown around the aorta and that the surgery (which was scheduled for tomorrow) was no longer an option. I asked if she understood what I was saying so far, and she said yes. \"Mom, this cancer is going to kill him\". Instant regret. That was so harsh! I can't believe those words just came out of my mouth. I had practiced \"We don’t know how long it will be, but he will eventually die from this cancer.\"

E - Emotion: She cried for a long time, with Kat holding her while we all sat in silence, surrounded by her sadness and grief. We then spoke about getting Keitu's grandparents there so that we could speak to them too. I walked out of the meeting and immediately burst into tears. I feel so guilty. That was so awful. What a horrible job! S - Summarize: I didn't do it. My mind was racing with how I couldn't take back what I'd just said. I think the follow up was \"let me know when the grandparents arrive, and we'll come speak to them\". We asked if she wanted us to sit with her or if she’d prefer some time alone, and she said she wanted to be alone. I gave her a hug, said “I am so sorry“ and walked out. I hated it. I never want to have to do that again! Breaking difficult news is a complex communication task which takes time and practice. By using SPIKES, some of the distress of both the patient/family receiving the news and the healthcare worker breaking the news may be reduced.17 By showing empathy and love, exploring their understanding of what is happening, acknowledging their feelings, and validating their emotions, patients and their families can be guided through difficult times. I don’t know if it ever gets easier for the person breaking the news, perhaps in time, we just learn to sit in the sadness better.

11. FEEDING AT THE END OF LIFE 9 November 2021 Teagan went home in March after the treatment for his relapsed Neuroblastoma failed to shrink the tumour. After him nearly dying from sepsis after his last round of chemo, and the parents being counselled that nothing stronger could be offered, they chose to take him home and spend quality time with him before he dies. Maggie is an incredibly loving and caring mom, when Teagan was admitted, she would always cook healthy food for him at the lodge and bring it to the ward. For some reason she doesn’t seem to be bothered about healthy food anymore and in my mind, this is probably the most important time for Teagan to be eating nutritious meals. She posts daily on his Facebook page, about what he ate that day. It has been weeks that he’s been living off 2-minute noodles and “chippies“ with the odd chicken curry every two or three weeks. The last few days though, it’s been a lot worse. He now literally only eats the tomato sauce that comes his chips and the noodle spice. Teagan is fading away; he is literally skin-and-bone and I don’t understand why Maggie isn’t offering healthier food, or at least supplements to try get some calories into him.

I was wrong. Maggie was not leaving Teagan to “waste away“ or “starve to death“. He had anorexia and cachexia which are common at the end-of-life in children with advanced cancer.18 Food is generally used by the body to provide energy and repair tissue, but in a dying child, the body is no longer restoring and repairing and therefore the amount of food required decreases dramatically. Teagan’s weight loss and loss of muscle was involuntary, and no amount of calorie-rich milkshakes or spinach and carrot juice being poured down his throat, was going to reverse that. If Teagan had been forced to eat, it may have caused him pain, abdominal distension, diarrhoea, constipation, nausea, vomiting, emotional distress, and as a result increased his suffering. Teagan may in fact have been comfortable and experienced analgesia and feelings of elation due to the state of ketosis, resulting from him not eating.19, 20 Maggie acted in Teagan’s best interests. I wish I hadn’t been so judgmental. When a dying child requests a specific type of food (day in and day out) which is all they are willing to eat, why not allow them to have it?



12. MULTIDISCIPLINARY TEAMS 26 March 2022 A week ago, we had our third palliative care meeting. We started having them this year and the aim is to meet up every second week to share information and discuss individual patients. There was a good attendance with a variety of representatives from the multidisciplinary team. Doctors, nurses, social workers, Bonni (a play therapist), a counsellor and our dietician were all present. We discussed Ricardo and managed to touch on all aspects of his care - his body (the Leukemia has relapsed into his testicles, his eye, and his brain), his mind (he went through a bit of a “depressed“ stage but seems to have come out of that now), his spirit (driving the Jeep down the hospital corridor gives his life meaning and purpose), and the support of his family (his mom is having a very difficult time accepting his relapse and Kat offered to reach out to her priest to provide extra support in her time of distress). Unfortunately, palliative care was not initiated for Ricardo at diagnosis, but only started once he had relapsed and his prognosis took a turn for the worse. We had a family meeting with his mom, aunt, and uncle, where all information about Ricardo’s condition, disease trajectory, prognosis and treatment options were discussed. The opportunity to take him home and make the most of the time he had left (while managing any distressing symptoms) was offered, but despite the poor chance of survival, his family has opted to “do everything we can“ and so treatment has been reinitiated. Palliative care requires a broad MDT approach and requires the involvement of the family. Support of the patient and family needs to be ongoing and once plans have been made, it is important to follow up on them in order to determine if other avenues of support need to be sought. Palliative care is not well understood amongst the team working in our ward and these meetings are bringing to light what palliative care entails and how we can make a difference in the lives of our patients and their families. We are all slowly learning.

13. TRANSFUSIONS AT THE END OF LIFE 11 April 2020 Tayron is back and the family are demanding that he gets a unit of platelets and blood. I can’t even begin to explain how frustrated I get when the doctors give in to these demands. After his initial diagnosis of Acute Lymphoblastic Leukemia at 10-months-old, he has relapsed three times. They couldn’t find a match for him on the bone marrow registry so in terms of curative treatment, there is nothing left to offer. Tayron is going to die. And his family refuse to accept it. I asked the consultants why we keep transfusing him. It isn’t fair to Tayron to keep dragging him on and prolonging his suffering. It also isn’t fair to the bleeding child, who has a good prognosis, but can’t get a unit of platelets because the blood bank has run out. The doctors explained that between the three of them, they have spent approximately six hours, counselling Tayron’s family, explaining that the blood is only going to prolong his life and thereby prolong his suffering, but they keep returning every 3-4 days demanding blood products. They said that when they did inform the family that they won’t be ordering more blood products for Tayron, the family went to the hospital’s Patient Care department to complain that we were refusing to treat Tayron, and so, the blood products were ordered.

When parents are informed that no more curative treatment options are available, an internal struggle happens between the parent’s wish for “preservation“ and their willingness to “let the child go“.21 Preservation means that parents want to preserve the life of their child, and they attempt to do so by searching for interventions (such as blood transfusions) which may sustain their child’s life and thereby postpone their loss. Although blood and platelets are a scarce resource and the principle of distributive justice needs to be considered, it will not be helpful to the family (and may cause hurt, and harm to the relationship) to discuss this, or the cost of blood products as a reason for stopping transfusions. Communication is vital and despite the six hours of counselling which the family received, they may have needed more time to understand that we had Tayron’s best interests at heart and that was the reason we had for wanting to stop transfusions.

14. ETHICAL ISSUES 5 July 2013 We are “hiding“ Melokuhle in isolation so that her grandmother can sleep in with her and so that it won’t be as easy for her grandfather to come and take her away without permission. This has been a wild rollercoaster of a ride with a lot of emotion flying around. Melokuhle’s maternal grandfather has refused to allow her parents to sign consent for her leg to be amputated, and our doctors are fighting back because it would be life-saving surgery for her. The doctors and social workers have tried multiple times to set up a meeting with the father but each time, he fails to arrive. He has become verbally abusive, threatening the grandmother’s life if she doesn’t bring Melokuhle home, saying that he is coming with the police to remove the child from the hospital himself (that he doesn’t care if she dies), and threatening to kill the doctor, as well as himself. Melokuhle is only 1-year-old, so unfortunately, she’s too young to have a say in any of this. Prof DTR went to the Children’s Court yesterday to apply for a court order to proceed with clinical treatment and was granted consent for the necessary amputation. The decision was made under the Children’s Act 38 of 2005, Section 46 (1)(h)(ii) – “A children’s court may make the following orders: a child protection order, which includes an order- giving consent to medical treatment of, or to an operation to be performed on, a child“. Melokuhle’s amputation has been booked for next week. Update 2022: Melokuhle is a healthy 10-year-old girl who walks comfortably with her crutches, does well in school and follows up once a year in the paediatric oncology clinic. The attitude of the father changed substantially a few years back and he is now very grateful towards Prof DTR who he had previously threatened to kill. The father now hugs the doctor every time he sees him, and thanks him for saving his daughter’s life.

Clinicians perceive themselves as “professionals trained to treat“, and as ethical practitioners they should recommend what is in the best interest of their patient, within the field of their expertise.22 According to the Convention on the Rights ofthe Child23, 24, the following articles are applicable to Melokuhle’s care: Article 3 (best interest): the primary focus, of any decision or action affecting Melokuhle, should be in her best interests; Article 6 (right to life, survival, and development): Melokuhle’s right to life and the chance todevelop to her full potential should be upheld; and Article 24 (right to health): upholds the right of Melokuhle to the highest available standards of health and to services where illnesses are treated, and health is restored.

15. SPIRITUAL PAIN 18 July 2022 Haemophilia A is an awful disease. Arnold has been in excruciating pain for nearly three weeks now, despite being on Paracetamol, Amitriptyline, high doses of intravenous Morphine, with oral doses of Morphine for breakthrough pain. The trigger joint that he keeps bleeding into is his left knee. He has been to theatre four times since admission because the blood keeps accumulating in his knee, even though the surgeons place a drain each time. You literally can’t touch him without him screaming in pain. It’s been a real challenge to turn him, change his nappy, and bath him. Cognitively, I don’t think he quite at the same level as his 8-year-old peers and I suspect it may likely be due to previous brain bleeds. He is a foreigner and very few nurses understand him, or are able to speak his language. His mother has not been able to get off work, so he has been alone. Yesterday I needed to give him medicine and was surprised to find his bed empty. I thought he may have been taken for a sonar or scan. I asked the other children where Arnold was, and one piped up that he was in the toilet. “Are you sure? Arnie doesn’t go anywhere! How on earth did he get to the toilet?“ The next moment, the bathroom door opens, and Arnold comes WALKING out, hopping on his back-slabbed leg, pushing his drip stand, followed by his very proud looking mother. I nearly fell flat on my back. It took me a while to figure it out, but I think the ball dropped in our second contact week. Arnold may have been experiencing physical pain, but the analgesia should have taken care of that. I believe he was in spiritual pain “a pain deep in your soul (being) that is not physical“.25 He needed his mom, and his pain was significantly decreased once she arrived. I didn’t feel that I could offer him anything else – I was giving him the analgesia he needed but couldn’t speak to him because of the language barrier. I should remember that everything a nurse does affects the spirit of the patient, from making eye contact, to a gentle touch, to active listening, to approaching them with care, empathy, and an open mind.26



16. SEXUALITY IN ADOLESCENCE 28 July 2022 It’s been a little over a month since Penelope told me about her girlfriend. She has been admitted to hospital to have radiotherapy treatment for the relapsed osteosarcoma in her arm. She came to sit with me the other day while I was doing admin and told me that about a week ago, her mother demanded to see her phone, made her unlock it, read all the messages between her and Sa and then punished her and said that she may no longer spend time with her. I didn’t know what to say or how to respond to that. I think there are better ways of dealing with your child’s sexuality (even if you don’t agree with it.) There’s a boy in the ward who has been giving Penelope quite a bit of attention. They have been displaying typical innocent teenager flirting. He teases her and pulls on her new braids; she laughs and bats her eyelids at him. They are spending a lot of time together. Penelope came to offer some moral support when we changed the wound dressing on Sbonelo’s leg. I’m not sure if his wound was miraculously no longer painful or if he felt he needed to “man-up“ a little to make a good impression in front of the girl he likes but he handled it really well. I think we have a small “love interest“ going on here. Oh, the joys of young love... It’s actually really sweet to watch.

I have chosen not to interfere or ask if she thinks that what she is doing is ok, seeing as Sa is still in the picture. Penelope is terminal. If “dating“ both boys and girls (at the same time) is what she would like to explore in her last few months, then who am I to judge? I just want her to be happy - To find joy in life, regardless of who it comes from. Adolescence is a paradox – is it a time of opportunity but also of risk27, it is scary but exciting, a time to search and explore but also a time during which personal and social identities are formed, roots are set, abstract concepts and formal reasoning is developed, moral purpose is discovered,28 self-confidence and an awareness of self and others is developed, and independence is gained.29 Sexuality includes the interactions of physical, social, psychological, and spiritual aspects, and adolescence is a time during which individual sexuality is developed.28 An awareness of physical changes and body image comes to light as physical attraction to others begins.30 The effects of illness and the possibility of impending death can impact the development of adolescents’ sexuality greatly.

17. HOLDING SPACE 9 September 2022 Yesterday was incredibly busy in the ward. Our team had a palliative care meeting, but I honestly felt that I didn’t have time to join them, so I spent the afternoon running around trying to get my work done and feeling particularly overwhelmed. Jaydon was admitted on Monday for radiotherapy. He has completed his chemotherapy for Retinoblastoma but had started showing signs of weakness on Saturday and wasn’t able to walk properly. They scanned him on Tuesday, and we were waiting for the results. I saw his mom Cynthia crying earlier in the day and some of the other mothers comforting her. Chemo arrived for him, and I needed to get it started. I thought that I would tell her that I don’t have time to talk right now but I’ll start his chemo and come back later to find out what’s going on and why she is sad. I then started worrying that I wouldn’t get time to go back later to talk, and I didn’t want to make empty promises, so I went up to them with the chemo, bent down and gave Cynthia a hug. The floodgates opened. She told me that the scan results came back and showed relapse into the brain and that although the chances of survival were slim, they are restarting chemo for Jaydon. She said “Nadine, where is God?“ with tears streaming down her face. She told me that maybe she was a bad mother and God knew it and that is why this was happening. She said she did everything right, she showed up - for every appointment, every scan, every EUA (Examination under anaesthetic), every chemo, his enucleation... She did everything right and she wouldn’t be able to go on living without Jaydon. I sat with her in her immense sadness, holding space, with my own tears running down my cheeks. Cynthia needed someone to listen, and I offered a presence, a comforting hand and made sure just to “be there“ in her time of despair. Bonni came to visit the ward yesterday and I persistently asked her to spend time with Cynthia. They had something in common and I really felt they could support each other. I later found them sitting together on Jaydon’s bed, talking, and crying.

Jaydon started fitting in the evening and we were rushing around getting Ativan, mixing a Phenytoin loading dose, trying to stop the seizures and reassuring Cynthia that we would to everything we could to get the seizures under control. I left work late. I spent a bit of extra time with Cynthia before I went home. I’m so glad I did. At 22:22, Cynthia sent me a message to say that Jaydon had died. Peacefully and in her arms. It was too soon. We were not expecting that. I got a message from Cynthia a few days later. It helped me realise just how much “being there“ can mean to someone. To listen actively, to be compassionate, authentic, sensitive, respectful, unselfish, sincere, encouraging, committed, and accessible.31

18. BURNOUT 19 October 2022 It has been 6 weeks since I told Keitumetse’s mom that he is going to die. It feels longer... Keitu was the third child to die in a row (within 3 days) and since then, I feel like everything has gone downhill. The ward is incredibly busy, we are literally admitting a newly diagnosed child every day. If we skip one day, we get two new kids the next day. There are too many children for the number of nurses we have. There is not enough time in the day to finish the work I’ve been delegated to (never mind do it completely and do it well). I am not coping. I am struggling to keep my head above water. I am drowning. In the past couple of years, I really felt as if my resilience had reached a whole new level. I stopped going home to cry myself to sleep when a child died. I was able to face fungating wounds without flinching. I could speak about the awful things these children go through without falling apart. But I have been sooooo emotional the last few weeks. I cried when my favourite little girl had mucositis so severe that she stopped talking. I cried when the big boys wrote their own song with the music therapists and sang it to us. I cried when a child rang the chemo bell. I cried uncontrollably at Jaydon’s funeral when the eulogy his mother wrote for him was read. I genuinely feel like I have had no life for the last 10 months. When I’m not working at the hospital, I am working at home - reading articles, writing forum posts, doing assignments. I stopped playing piano a few months ago because I honestly felt like I had no time. I haven’t seen friends, or gone for hikes, or done something fun as often as I had set out to do in my self-care plan in the beginning of the year. I started going back to church but then stopped going again. I haven’t painted rocks. I haven’t kept a mood journal. I haven’t exercised much in the last three weeks and only did in September because it was “Run for Reason“ and I’d made a commitment to others. The extent of my self-care has been to put cream on my body after I’ve showered (and even that gets skipped sometimes). I think there has just been too much on my plate for too long. I’ve been getting fever blisters, one after the other. I can’t keep this up for much longer.

I had a breakdown on Saturday. I sent my cousin a message to say I won’t make it to her child’s birthday party and then I sat on my couch and sobbed. I cried and cried about everything that has been going on in the last couple of weeks. I cried about the workload in the ward. I cried about the pressure I feel to finish this diploma and pass my exams. I cried about having to walk my dogs. I cried about the immense overwhelming feeling I have ALL THE TIME. I just cried. And then I called Bonni and cried some more while she held space. I did the burnout and compassion satisfaction questionnaire again today which we did in January. My burnout score went up from 23 to 40 and my compassion satisfaction went down from 39 to 24. It’s quite disappointing. I really thought I’d be able to manage all the stress better? There are three more weeks to push through. I am so tired. Physically, mentally, emotionally, and spiritually. If I had pain, I would say that I am experiencing “Total pain“. I wonder if you can have “Total-tiredness“? If so, this is what I have. My fuse is short. I snapped at a child the other day for spitting on the floor. I have been impatient with the other nurses. I rolled my eyes at the intern (a couple of times). I was short with one of the fathers. This is not me. This is not who I am. This isn’t how I treat people. I am quite certain of the fact that... I am burnt out. Burnout is the “exhaustion of physical or emotional strength or motivation caused by excessive and prolonged stress or frustration on the job“32, 33 which results in feelings of hopelessness34 and the dwindling ability to cope with one’s work environment.35 Self-care includes self-compassion - if your compassion does not include yourself, it is incomplete (know your limits and what coping strategies can assist you)36, self-advocacy (the ability to speak up for yourself, ask questions and challenge injustice), and self-love (realising that you are just as important as everyone else). You must believe that you deserve the care you need and take responsibility for providing it.

19. SPIRITUAL CARE 8 October 2022 Before starting this diploma, I had never heard of spiritual care or considered the spiritual needs of children. I honestly think that “spiritual care“ has been the most difficult concept for me to grasp over the last 10 months. Some days I feel as if I finally get it and other days it feels like I’m trying to solve a really tricky algebra equation while trying to make sense of it. To be completely honest, I’m still not 100% sure that I understand it. I’m struggling to recognise when I am offering spiritual care to my patients. I know now that spirituality and religion is not the same (although the two can overlap to some degree) and that spirituality is not necessarily about God (although it could be for some children). Spirituality is unique to each person and may be experienced in a pursuit of meaning, belonging, hope, connection, and purpose.37 I tried asking Valencia (age 15) what gives her life meaning or purpose... She gave me a funny look and immediately said “I’m too young to answer that question. I don’t have a husband!“ Maybe she considers marriage to be what gives a person’s life meaning? I don’t blame her for not being able to answer the question. I’m not convinced I’d be able to either. Is carrying a baby on your back providing spiritual care? Or making a bed for a child under the basin of the duty room because they’re scared to sleep alone in their cot? What about playing with a toddler or just “hanging out“ with the school-aged kids? Would giving children tasks to do (like carrying your IVs, pushing the medication trolley, or filling syringes with saline), because you constantly hear “Sista, give me job!“ be considered giving them purpose and therefore providing spiritual care? What about taking the kids out on the Jeep over the weekends because it brings them immense joy? Or letting them come out of the ward with you when you run errands? What about taking an adolescent across the road to sit in your car because he so desperately wants to see it? Does any of this count as spiritual care? I honestly don’t know…

Spiritual care is different for children in different developmental stages: * Infants (love and trust) – holding, cuddling, playing with, and singing or talking to them as well as ensuring that the separation from their family is minimised. * Toddlers (safety and security) – allowing them to have their familiar toys, blankets, and clothes with them and playing music from their favourite shows and reading stories. * School-aged children and adolescents – encouraging them to express their feelings, fears, concerns, and hopes. Accepting their anger and frustration without judgment and giving them the time and space to grieve their losses. * Parents and caregivers – allowing them to express sorrow, anger, frustrations, feelings of guilt, anxiety, fear, and blame, by being present and actively listening to their concerns.

Closing remarks What a year this has been! I love reading, but I think I can honestly say that I have never read as much literature as I have in the past 10 months. I can say for certain that I have grown. Not only professionally, but personally as well. I am not the same person now as I was when I started this course a couple of months ago. The biggest change for me has been in the way that I communicate. I am incredibly conscious of what I am saying to someone, be it one of my patients or their moms, the lady behind the till at the grocery store, the security lady manning the turnstile, the granny pushing her trolley at snail-speed in front of me, my friend complaining about the workload, a colleague who wasn’t very kind to a child, the intern who has asked the same question three times already... Is this the kindest way to say this? Could this be hurtful for the person to hear? Am I using the calmest and kindest tone of voice that I can? Could something else be going on in this person’s life which made them speak to me the way they did? How can I respond in a way to diffuse the situation? I have not always gotten it right, but I suppose it’s a work in progress. There is so much more that I have learnt which I look forward to applying in the future. I love the idea of having real knowledge that I can use to support my arguments when I feel that a patient could possibly be managed differently. EVERYBODY should know about palliative care. It really has the potential to change lives (no matter how short) for the better. We just need to make every effort to implement it. I look forward to doing that. Small steps...



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