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Ok, good afternoon. Good evening, good morning. Wherever you are joining from, uh welcome to the Zoom Academic Meeting of the Department of Pediatric Surgery in East London, South Africa. And today we are really honored and fortunate that Doctor Mena Ali is going to talk to us about palliative care in pediatric surgery. Uh Doctor Ali um is a pediatric palliative care practitioner. I think this bio is bit old so may n can correct me wherever um it's not appropriate. So she is a pediatric palliative care practitioner in the Gauteng province in the heart of South Africa. She completed her undergraduate degree at Wits University and started her postgraduate time as a pediatric registrar. Thereafter, she fell into palliative care probably more than seven years ago and that's where she found her passion. She works currently at um two NGO S one is wit and the other is Lamba Sanctuary, a medical step down facility or hospice. She feels very strongly about improving the quality of life for both Children with life limiting and or life threating illnesses and their families alive as well as advocacy and training around what constitutes good palliative care. She has recently completed a postgraduate diploma in palliative care and plans to pursue her master's. I think she has already completed her master's in palliative care. And she also has interest in perinatal palliative care and presents workshops on the field for both colleagues and carers alike. So, Maras, thank you for joining us and, and giving your precious time. I know how you busy are, how busy you are. So I stop sharing. You can start sharing and then you can start uh giving you a lecture. Thank you. Mhm. Mhm. Hi, everyone. Can you see my presentation? Yeah. Hi, everyone. Thank you for joining us this evening. So as prof said, uh yeah, a lot has changed. I've been doing palliative care now for about 13 years. Um a little bit louder, please. So I teach both undergrads and post grads adverts. Um Yeah, I still do palliative care in the public service at all the teaching hospitals and in private and yeah, Lamba, I still do and I've added to my repertoire. I now also do teddy bear clinic for abused Children. And everyone asks if I'm crazy to do all of this. And I tell them, yeah, the hair gives it away. So we're gonna do a quick introduction to the general concepts of pediatric palliative care. We'll go through some surgery and palliative care together. We'll see a little, a few case studies. Um There's a takeaway home message and then we end. So according to the wh O the World Health Organization, the pediatric palliative care is defined as the act of total care of the child's mind, body and spirit. And it also involves giving support to the family. A big myth is that palliative care is reserved for only terminally ill Children. But it is appropriate from those in transition from curative to palliative care and those still receiving curative therapies. So a lot of the times I still get called for Children that are uh a lot of these Children have malignancies and it's early stage. And it's ideal to start when it's so early because then we can have a good repertoire. We build a good rapport with the family and we walk this journey with them. So it's very important that we start early on in curative therapy and palliative care for the Children and young people is, as I said, is an active and total approach to care from the point of diagnosis or recognition of the disease throughout the child's life until death and a period beyond. So it's important from the time of diagnosis or recognition. I don't like getting terminal uh referrals and we don't support, we don't stop supporting the family when the child dies, we support them until a period of time a afterwards until the family then tell us that they're ok with everything that's happened to them. So for me, palliative care is about making a difference. It's about improving quality of life not just for the child, but for the family as well by controlling pain and other distressing symptoms, especially at the end of life. It involves a lot of end of life planning. So we facilitate a lot of uh advanced care planning, talks around death and dying with the child and with the family. And we include the child and the family's wishes and we offer psychosocial support and bereavement support. So just briefly, the history of palliative care was founded by Dame Cecily Saunders. Um She initially initially studied sociology and uh she injured herself, then went on to study to become a social worker, was roped into the wars, World War One and World War, World War Two, sorry, and then decided to become a nurse and she saw a lot of suffering amongst the people the were injured. And then she became a doctor subsequently and she fell in love with a Polish soldier who left her a sum of money when he died. And she used that money to start building Saint Christopher's hospice, which is the first hospice of its kind in the UK. And that's how she started the hospice and palliative care model. And as you can see, it was quite a while ago, it was in the late 19 fifties. And she also developed the total pain concept which we still use to this day. And in that pain concept, we look at total pain. So we don't only just look at physical pain, which the patient is then presenting and tells us it hurts. Uh We look at spiritual pain, psychological pain, social pain, mental pain, financial pain, which a lot of us don't talk about once you've discharged a child from the ICU, you know, it goes to the ward and nobody looks at then the financial burden of caring for a child. Thereafter, Pete's palliative care. On the other hand, started in the late 19 eighties. It actually started about 1987 and it was undertaken by two families. Um The one family, the child was born premature or both Children were born premature. Both were born around 800 g. Around 2829 weeks, Jeffrey Lawson was the first kid and first child. Sorry. And he had a PDA back in 1980. They wouldn't close the PDA like how we'd close it today through a catheter. They actually opened him up like a bucket handle. So from sternum to the back and did surgery for him postoperatively. He was very unstable, metabolic, um vitals, urine output, et cetera. And he died. Um mom found her own team of doctors took them to court and they analyzed the pre op POSTOP and intra op charts and they realized he died because he was just, he was in pain. So initially, the belief was that neonates did not feel any pain. And Jeffrey wasn't given a sedative or a painkiller. He was just given a muscle um relaxant, a para a paraly uh paralytic agent, sorry, paralytic agent. And yeah, so he felt pain. And mom took these doctors to court to the hospital to court and the rule was first changed in 1987 the other child was Peter Harris and he also was born at 2928 weeks at 800 g. And he developed a listeriosis meningitis and they decided to ventilate him initially because they weren't sure what was going on with him when he came back as a meningitis. Uh the family were told they need to extubate and the child will die. He wouldn't be able to live long and he wouldn't have a good quality of life. They extubated him and he loved. He died recently at age 35 and mom then decided to challenge the doctors and she wrote her own guidebook and handbook for Children that live with disabilities and for Children that are born premature. And then that she talks a lot about the psychological stresses that she faced the financial burden that she faced and how doctors would have engaged with her and how she preferred to have a team around her. And this is also where the peace palliative care movement started. So the role of our team is to provide physical, emotional, spiritual and social support. We communicate with the child and the family and we offer a lot of guidance on end of life decision making and we offer belief and support. So we look at physical symptoms that are not just basically um worrisome to the child, they're often more worrisome to the family. We look at the emotional side, you know, prescribe antidepressants, anti anxieties if we need to, a lot of the talk is around spiritual care. Whether, you know, uh God is punishing the family. Do they do something to um make God angry at them with the child? Go to heaven? Do they need to bury? Do they want to cremate if they do at which you know, a lot of the time? It's cultural issues. Where do they need to go to the family's to the dad's family's house, to the mom's family. We do a lot of social support. So we grant food parcels, um granting aid for the caregiver who's looking after the child and we often communicate with the child. I know sometimes it's difficult to communicate with Children that are very young, but we use a lot of toys and a lot of play therapy with them. So, an integrated approach is applicable and necessary from the time of diagnosis and we work together and I'd like to say that we're not an MG team, we're not a multidisciplinary team because it's very integral to know that in that multidisciplinary team, you crossrefer to each other. So the physio will come and write notes and move on. The occupational therapist will come and write notes and move on and you've got to walk through loads of notes and loads of reports in order to find what's going on with the child and what your role is in an IDT, which is an interdisciplinary team. We all work together. So we often will sit down in our IDT meetings and I will hear from the physiotherapist, occupational therapist, the speech therapist, the social worker, the counselor, the nurse who's looking after the child and we sit around each other. We bounce ideas of each other and we share our knowledge too. Aim for what is best for the child. So when I say palliative care is essential from the diagnosis, what we're actually talking about is a palliative care approach before actually calling the palliative care team and anyone can adopt a palliative care approach for any illness. Um And this basically just to support the family to understand, make them understand what they're going through to ease symptom burden and uh optimize quality of life. And we tell them it's not just quality of life for the patient, it's very often quality of life for the child as well. Um We facilitate family information and exchange education. We offer them a lot of support groups, we put them in touch with other organizations like Rare Diseases, reach for a dream. Um Patch, we community support. We start the topic of advanced care planning and serious illness conversations. And once a person is ready for palliative care then we can call the palliative care team. And it's a more holistic approach to management of the symptoms and end of life care. And then we finally move on to end of life care, which is um sometimes hospice, a lot of the time it's home based care. And then we offer a lot of bereavement support to the family afterwards. So when we talk about palliative care, referring to palliative care, the old model of care was that once nothing can be done more for the person or the child, when they say there's nothing more that can be done, then they used to refer to the palliative care team. But we always say there's n there's more that can be done and we may not offer it in terms of medical or surgical cure. We offer a lot of alternative treatments. We are a lot of uh we have managed pain and symptom control, which is a big problem for any child and parent watching them. And even just the support and counseling goes a long way. And then the next model, which is what we're practicing. Now, is that as the curative treatment, whether it's medical or surgical is raining the palliative care team, the involvement seems to get a lot more. And when the child is preterminal, it's mostly the palliative care team that is still involved. So I tell doctors, nurses, medics alike, we shouldn't wait for the curative door to close before the palliative door opens, we should open both doors together and work alongside each other. Just a few stats for you. I mean to show you how much palliative care is actually needed. So, palliative care is not available in 42% of the world's country. So a lot of these Children go unhealth in pain and suffering. Um Funding for palliative care is only available in 68% of countries and only 40% of countries actually reach the services. Well, half the patients reach the services in our country. Currently, we have only two doctors that are funded for palliative care. Michelle, Doctor Michelle down in Cape Town and Doctor Julia down in Durban. Doctor Julia is only funded for 40 hours a month. The rest of the funding, the rest of us are not funded. My funding got stopped um last year this time and you either have to find a fighter or you just keep doing your job without getting paid because ultimately, it's the patients that's cell phone, the global estimate of the need for palliative care. As you can see South Africa, somewhere falls between 15 million, um 15 million, 900,000 the population. And according to this calculation, only 59.6% of the world population receives palliative care and less than 5% of the population in South Africa accesses palliative care. And as you can see worldwide, only about 14% of the people who currently need palliative care, receive it. So this some of these stats are old. But you can imagine with the world as it is now with war, famine, um natural disasters, an influx of foreign nationals into our country, our need and our estimate is much, much higher. And uh yeah, we don't have enough staff and we don't have any funding at all. The South African government, the national um the Department of Health was meant to fund us as of 2020 2021. That's when the project was tabled for initiation of palliative care in all tertiary hospitals and primary healthcare centers. And still to date nothing has happened. So we always talk about Children as small adults, but they're not small adults. The causes of death in Children are very different to those in adults. Um adults will die from a heart attack or a stroke and we hardly see those. We never see those in Children because most of our conditions are congenital or um neonatal and adults don't see this. Um They don't follow up Children like this when they do receive uh when they do turn to adult Children, we continue to see our Children until they're 18 years old, sometimes even they're 21 and we still keep them in ps variety of childhood conditions are very rare and the length of illness varies. And this is true for all these rare conditions. Um I've had two siblings last year with the same condition which is very rare. There were only eight of them reported worldwide and two of them were in South Africa. One child lived until she was five. The other one died early in, um, just past, yeah, early in childhood, early childhood. So she was about a year old when she died. Children continue to develop emotionally cognitively and physically. So not to, Children are the same. Um, chil a child that could be six years old, could be emotionally stable. Another one could be stunted emotionally cognitively as well. Um, they continue to develop until they're 18 years old. Entire families are affected and what we're seeing now is that not, it's not your usual family of a mom and a dad and Children. We're either seeing grandparents as um the primary caregiver. Sometimes it's older siblings that are the primary caregiver. Sometimes it's even neighbors um, that are stepping in to help. We recently had a young girl who was preterminal with, um, leukemia. Her mom had died. They didn't know where her dad's whereabouts were and a neighbor of theirs actually took her in and he was, he was a man, he was a man and we found it odd that he would care for her in her time of need. You know, he would bath her, he would change her, he would take her to hospital and he wasn't even related to her, but he was deeply bonded through this child more in some instances, more than one child in the family can be affected with the same disease. So we often have Children like three or four Children in the same family that's affected. We've currently got one family. The oldest child is bedbound. The second child I think is wheelchair bound and the third one is, um, immobile, but still trying to crawl. And the mom is struggling with the social burden, the physical burden and the financial burden. The treatment and doses are very complex in Children. As you know, we use, we work on milligrams per kilogram and it's very hard sometimes to titrate downwards and the emotional impact on families and healthcare workers is quite severe. This year alone, we've seen a lot of our colleagues either dropping out from burnout or just going through severe depression and anxiety as a result of burnout. I hope this comes out clearly. But you can see that the conditions we deal with. Um, the big blue component is a lot of congenital malformations, deformations and chromosomal abnormalities. And they are often quite rare. In the past year, I've had to deal with somebody that had a Trisomy nine and a Trisomy 10. So it's often these very complicated and rare diseases. Um, the pink component is your neoplasma, um diseases of the nervous system. So your central nervous system, we're seeing a lot of spina bifida and phal encephaloceles. And then second to that third or to that will be your neoplasms and then conditions or originating from the perinatal period, endocrine nutritional disorders and then others, which I'm assuming could be your diarrheas, your vomits, accidents, um near drownings. When we talk about Children needing palliative care, we either talk to them about, we talk about them either being life limiting or life-threatening with a life limiting child. There's no reasonable hope of cure progressive deterioration that renders a child completely dependent on caregivers. So a lot of this time will be a hydrocephalus or a cerebral palsy or somebody that has a traumatic brain injury from a pedestrian vehicle accident. Somebody who has a lifethreatening illness is the curative treatment is feasible, but it can fail. And often these are your solid organ diseases like somebody needs, is going into kidney failure and they need the only way to help them is dialysis and a kidney transplant. Somebody has uh heart problems and the only way to treat them would be a heart transplant as well. And then we further subdivide them according to the act classes, but I'm not gonna go into that. So now we're gonna start talking about surgical palliative care and surgery in palliative care. Unfortunately, when I started researching this topic, there's not a lot of information around pediatric palliative care and surgery or palliative care and pediatric surgery. So a lot of this information is actually extrapolated from adult care. So we know that the practice of palliative care has grown substantially over the last 20 years. And a lot of the data then shows us that seriously ill and injured surgical patients as well as their families could benefit from integrating palliative care into surgical pa uh practice. And this comes from the annals of palliative medicine. Therefore, the need for primary primary palliative care skills. There's a need, a big need for primary palliative care care skills to be acquired by the surgeon. And by we talk about primary palliative care and a specialist services. So p primary palliative care is where anyone can do it. Be a nurse, a social worker, uh even a surgeon and specialized services is where somebody has trained in palliative care. So we need to identify all aspects of suffering which are critical to care needs of the patients as well as their families. And earlier, we talked about total pain. So when we talk about all aspects of suffering, again, we've got to bring in the psycho psychosocial side, the spiritual side, financial side as well as the physical. So identifying all these needs of suffering has, has not traditionally been taught in medical school and there's no undergrad training in it or even post grad training in it, but it needs to be reinforced and it very much includes communication skills, effective communication skills. I've often been with surgeons or other doctors and when you ask them to break bad news to a family, they're either mumbling or pretending to tie their shoes or pretending they've got somewhere else to go, but we need to learn how to communicate effectively with our patients and to each other. It should be incorporated in training and in practice in so that everyone could identify acknowledge and treat pain as well as suffering. And the aim is to overall improve quality of life. And again, it's just not for the patient, it's for the family as well. Mm Sorry about that. So three key components identified, three key components identified. So we often need an empathetic surgeon patient partnership. So you guys know that old joke about the quickest way to kill a surgeon, make him jump from his ego to his IQ. So everyone feels that surgeons are not empathetic, but we need this relationship so that we can embrace patient autonomy and we need to include patients in this discussion. Remember, the legal age of consent for all medical and surgical procedures is 12 years old. So when you are seeing a child and they at that age, you can actually engage with them and ask them one for consent to touch them and examine them and two for consent for anything else that you're doing, ask them what their wishes are, what do they want? What do they hope for? And all of this again is to optimize quality of life. We need to anticipate, prevent and treat suffering and it's not just physical suffering. Again, we're not just taking out the cancer and everything will be better. It's all aspects of suffering and we need to address all forms of care. Again, it's a spiritual, physical, social and emotional side. There's this ethos of never give up, give up with surgeons. And this is what we need to address. It's not just surgeons, it's all healthcare workers. You know, we all aim um to treat the patient to the best of our abilities. But I also call it the God complex. We think we got and we can just keep going and just keep going and we're actually doing it for ourselves. And often it's more textbook. It's what you've learned in medical school. It is what you've learned in surgical training. They tell you step one, step two, step three, if this happens and it goes wrong, do this or if that doesn't work, do this and we just keep on going to the detriment of our patients. So we often have to ask ourselves, who are we doing this for? Is it for us because we will be a failure if we stop or we give up or are we doing it in the best interest of our patient? I'm sorry, I don't know why this was plastic. We, but it was engaging with the idea of palliative care. The concept is that engaging with palliative care might lead to actually early death. And that's because it's that ideology again of giving up of being a failure. And this perception is actually a barrier to palliative care, whether you are referring or whether you need to access that palliative care. And a lot of these uh apart from this, the other barriers are, there's not a lot of, a lot of palliative care education. I mean, when I was in undergrad, we never received it in postgraduate, I never received it. My background is impedes and only after PS being AEDs registrar, did I go into palliative care? And that was only because a colleague that was currently doing EDS, palliative care at bar A was going on maternity leave and she needed somebody to fill in for her. Otherwise I would never have been told about palliative care. We're doing currently a lot of undergrad and postgraduate training. So we're starting at a G MP3 level and going all the way I do post grads with interns M OS either face on or as I'm going through the wards, I'll educate them a little bit about, about pain and symptom control. We teach a lot of registrars and we do case scenarios with them. There's a shortage of service providers. Um very much a shortage. There's a handful of us doctors, we have nurses, social workers, um and counselors that are trained in pediatric palliative care as well as adult palliative care. And I must say I've never come across a surgeon that wanted to do palliative care. We've come across a lot of uh emergency doctors and uh physicians that will do it. And the biggest barrier for me is the late referrals and I know something that is better to refer late than not to refer at all. But it's very challenging to come on when the child is preterminal and going to die in a few days. And you've now got to engage with that family, that family is distraught because they've just been told there's nothing more that can be done. Number one, they feel like the home team or the unit team is abandoning them and passing them on to somebody else. And at this point, the family is very angry and it's very difficult to engage with them. Other areas that I thought would be of concern would be the preoperative operative period. And a lot of end of life scenarios, there is a universal opinion that by accepting surgery, especially in a government facility that the patient and family consent to any POSTOP intervention that will be necessary for survival. And often these are not discussed with the family, it's just taken for granted. So preoperatively, we should learn to communicate with the patient with the family, even with other family members that will offer them a lot of support. So preoperatively, a lot of the time we just go to the patient just to get informed consent and we just explain the procedure to them in medical terms and then we move on. But preoperatively, you should be able to sit down with your patient and discuss these things. Does surgery align with goals, is it they wanting the surgery or somebody forcing the surgery onto them? And a lot of the time, that's what we find is that the parents will actually demand the surgery and it's not in the child's best interest because everyone is doctor Google these days and everyone does Google and this is where the risk will outweigh the benefit for the child. We've got to go back and think what is in the best interest of the child so that the benefit will outweigh the risk. Ask them about the desired outcome of surgery. What are they hoping for? What are they wanting if you've got to, um, do a spinal fusion, for example, you know, are they hoping just for pain relief or they are hoping for to be able to walk again? Because again, the surgery is not gonna line with the, with the outcome of what they want or with their ideas or perceptions about what the surgery will equal. Um, I've had patients and parents that will tell me the doctor took out the cancer and my child is supposed to be ok. My child is going to get better. My child is going to be 100%. Why are you telling me that the cancer is still in my child's body and my child has to go under more treatment? Mm A lot of the time they'll tell me the surgeon put in a pig, for example, and that's only supposed to be temporary. Nobody told me that the peg is going to be there for long term use or that I have to do everything with the peg. They told me my child will get better once the peg is inserted. So we don't discuss any of these treatment outcomes. We don't discuss anything with the patient. We also need to discuss postop outcomes that they are willing to endure. And a lot of the time again, this is not discussed prolonged ventilation in ICU setting, even in the ward, even um the child getting a tracheostomy, it's because of the prolonged ventilation and we don't discuss this with the parents. We're just talking a child's be with a tube in their mouth for so long. And the next step would be to get them on a tracking. Again. We don't explain the tracking might come with a home vent or it might not come with a home vent. And then we need to discuss these problems and these are the adverse outcomes that could potentially arise postoperatively. We struggle to talk to patients about poor prognosis and what that actually means. We struggle even more. We're talking about death, death and dying. I use the words death and dying. I don't like to beat around the bush. And for me, there's no gray, there's always, it's black or white, there's no gray. So if somebody is dying I will tell you the mother or the father or the family, your child is dying. You can expect the child to die in the next two days or, and they get very upset because culturally, you're not allowed to use the word death and dying. I think it's polite not to use it in today's society. But we need to move away from the stigma of talking about death and dying. I always tell the people that I teach you talk about a mother giving birth and about having a baby. And the converse of that is death and dying. It's a natural life cycle. Why should we be scared of it? But the belief is also that talking about death so early on will make the family or the child afraid and they might not go ahead with the surgery itself. And all this comes back to effective communication. We need to effectively communicate with our Children and with our families, we need to understand that these families are undergoing immense stress. They have a lot of difficult decisions to make. And there's a big need for open-ended seamless communication. And if you can't do it on your own, this is where the interdisciplinary team will come in. And part of this team should be, the sergeant should also include the anesthetist and you sit down together with the family. Sometimes they do get overwhelmed by a big crowd of people surrounding them. But I think it's important for everyone to be on the same page with the family. And we need to discuss long term whether multiple surgical interventions or procedures will actually prolong suffering prolong hospitalization or just help the surgeon with their clinical skill. A lot of the time I come across families and patients who I mean, yeah, just undergo multiple surgeries and no one has actually spoken about the diagnosis, initial diagnosis and the poor prognosis with the family. I recently had a child diagnosed with holo visceral myopathy and they only came across that diagnosis is a child presented with massive bowel obstruction, um, and stool and fecal impaction and underwent a laparotomy and um bowel resection and then a stoma and she was not doing well like two or three days afterwards. And she went in for a re Relook and she went in for multiple Relook. She ended up with about five or six Rooks and the family didn't understand. They obviously thought the child was getting better because the surgeon kept taking her into the hospital and in the theater and they didn't understand why when she came out of this. She had a trucky because of prolonged ventilation. She had a bag and she had a venting stoma. So nobody spoke to the family about these possible outcomes. They just thought that the family thought that doing these multiple surgeries would actually get the child better, but it actually prolonged this child's suffering. We need to communicate about end of life. But that again comes back down to the family, actually losing hope. You don't want the family to lose hope. You don't want the family to lose trust in the treating doctors. But who is the best person to initiate this discussion? Often I find it's best for the treating doctor to actually start it in uh the discussion. But when it actually comes time to proceeding with further discussions and especially advanced care planning, it, it is better to pass it on to the palliative care team, seeing another doctor that comes in and says the same thing as the first doctor often supports the diagnosis that is support prognosis and we are leading to end of life planning. And it also creates still trust with the treating doctor that the family could under or believe that the doctor didn't let them down, they showed them um had good support with them and they can still trust that doctor to do, you know, to see other Children or to help other Children with the same disease. Mhm. Again, it comes down to trust and whether feel withdrawal by the actual surgical team by the treating doctors. And that's again, you don't want the family to lose hope. Again, you've got to bring in your IDT team, your interdisciplinary team. And I think the surgeons do need to be a part of this. We very seldom have these discussions of uh with um with a consultant or even with the registrar, often I'm having these discussions with an medical officer who then tells me I've got to speak to the reg and then I've got to speak to the consultant and then your whole plan or your whole idea about supporting this family and pain management gets distorted along the way you need to remember to tailor your communication around a child's development. So no medical jargon often find drawing pictures helps. It's we are very visual beings. Even with families. Um Parents, you need to be very visual. So if you are trying to tell them that, you know, there's um there's fecal impaction causing bowel obstruction. For example, you've got to show them an X ray that is normal versus their child's x-ray. If there's a large tumor pressing on the spinal cord, you've got to show them an MRI that's normal versus their child's MRI. And the same thing with a child, no medical jargon, you've got to get down to the level eye level and talk to them in a way that they understand and use dolls, use props that will help you get your point across. We have uh a new specialty coming out which is a child life specialist. We've got currently three of them here in South Africa and they are amazing with talking to Children about pain and anxiety around surgery, about blood draws. Um They use a whole lot of tools, they'll use a pool noodle with like a straw to show you the child the vein and how blood is going to come out doing blood draws. Um, there's a book that they make, uh, about surgery, for example. And look, they've got, it's a flip file. So that actually have pictures of what the surgeon should look like. What, um, moving down the corridor to the operating theater looks like. What does the anesthetist look like and what equipment she's using. And it's actually pictures that are taken in that particular hospital. Um They'll show some of the equipment like the scalpel and the blades that the surgeons would use and how they need to drape the patients. So this creates uh decreases the patient's anxiety, decreases the patient's fear. And it's simple things that we can do effectively. Remember, I'm not being able to deliver bad news at all and not being able to deliver bad news even badly will add to patients anxiety can add to their depression. And in research, it has shown that a lot of patients commit suicide because of the bad news. And this can lead to because we're not able to deliver bad news. It can then lead to recommending interventions with sorry um recommending interventions with limited value with limited value. The other thing we don't really discuss with them is do not resuscitate orders or advance care plans. What happens if they are placed on a life support machine who takes that decision? Um If they stop breathing and they need to be resuscitated. Do they want to be resuscitated again? So we don't discuss these things and we often don't discuss, we don't discuss at all organ donation, especially with Children and families that is very heartbreaking for the mom or the dad to go through. And, but we understand there's such a need for pediatric organs in our country. So we should also start including the transplant team in our discussions and talking a lot about organ dimension. Just to help you understand how we can communicate effectively. There's two different methods that we can use. The first one is the Spikes protocol and the next one is the best case, worst case scenario. So the spikes protocol, you need to ensure your setting is perfect. So sit somewhere comfortably. You don't just sit in the corridor on the floor around the hospital theater passage. So make sure you're sitting comfortably chairs, you know, it's a quiet environment. Your cell phone is turned off. You're not sitting closed with your arms closed, your legs crossed, you're sitting open, inviting the family to have a discussion with you. First thing you do is you ask them about their perception. So what do they understand about the disease? What do they understand about prognosis? What does it mean? And always try to get back to simple language, not just medical jargon. Ask them if they want to know, how much would they like to know? So invite them to invite them. How much would you like to know? How much should I tell you? How much are you willing to hear? Are you willing to hear all of it or just a little bit? And the next time we have a discussion, we'll go further into this. So when you're sharing your knowledge, remember again, no medical jargon. Break it into simple terms and you've got to keep going back and asking them. Did you understand what I said? And then please repeat back to me in your own terms in your own language. What I told you what you understand what you know and then look at the emotions you need. Yeah, it's people cues, you need to be familiar with their emotions. Are they sad? Are they angry? Are they becoming hostile? Do you need to call in a senior? Do you need to call in the legal team? Um and then discuss a strategy with them, formulate a summary, but remember to take very good notes, you've got to document everything and keep going back and asking the family. Is this OK? Is this what you wanted? Is this what you understand and make them sign? It is very important to document and to make them sign. The second idea is to use the best case, worst case scenario. So the best case would be you give them positive outcome and positive outlook on whatever they had. And the worst case is obviously going to be the negative scenario. With the worst case can actually lead to death when we talk about palliative surgeries, often for advanced diseases. And these are normally your malignancies. And after the surgery is done, mostly for symptom control to augment the disease control. So to stop the disease from spreading and its overall survival. Despite a poor, poor quality of life, a lot of families will take a child being a vegetable rather than a child being dead. And a lot of these surgeries will incl uh include debulking or cytoreductive surgeries, especially for brain tumors. Um venting stomas BP shunts in Children that are have hydrocephalus or um raised intracranial pressure from a tumor, tracheostomy and feeding tubes in those that we know are not able to get off a ventilator and are becoming ventilator dependent. And a lot of the times also just for not even for quality of care, but just to try and get the child home to spend some time with the family. And this is where palliative surgery will come in. I mean, when we have a discussion, if there's anything I missed you about palliative surgery, please feel free to um chin and the other surgical conditions that need appropriate palliative care referrals. And I don't mean a late referral, I mean a tiniest referral. Often the surgeons will want to do surgery on a hypoplastic left heart or congenital heart disease. Um This is very big, but unfortunately, we only have one cardiothoracic surgeon currently here in Gauteng. So, surgeries are very limited. Um We're seeing a lot of bilary atresia, um, post coside preco posttransplant still. And these are easily diagnosed from birth necrotizing enterocolitis. Um, especially when it's uh n totalis. It's very difficult to come in and tell the mom that the f the baby is dying at that point. It's important to refer, we can do so much with that family at this point. Um malignancies, bypass and obstructions intestinal atresias. And I'm talking about the type fours where it's duodenal or vaginal atresia. And this often leads to short bowel syndrome cases where there's total parenteral nutrition dependency. And I've had these before in Children that ha have intestinal failure and they actually have to go home on TPN. And it's only been, it's being done at our hospital here in Gauteng Admin Stream Hospital. And there's a specialized team that does this, but it's very challenging to do this knowing that the child can still die, corpus colostomies in terms of uh refractory seizures, transplants. And a big one. A big one that means referral from the surgical side for me is pain management. We often don't know doses, the doses are inadequate. Um The route is inadequate. I could never understand why a child is getting, getting IV profalon when he's able to tolerate orally and can take paracetamol. So just remember pain management and it's not just pain management postoperatively. It's also procedural pain management. We do things very badly as doctors. I always say that we will keep poking somebody for blood or trying to get a drip in. And when I, you know, if I asked you that was your child in that position or if that was you in that position, how would you handle it? And the answer is always, they will take offense, they will be upset or they will be angry. So, if you feel that way about yourself or about your child, why can't you think that this is somebody else's child as well? And you should offer the same service as you would want for yourself or for your child to them. If there's anything else here, surgical conditions. Uh, another re registrar told me something which I never knew about is vanishing, um, gastroschisis syndrome. I've never seen one of those, but a lot of these things are very common in my situation. I'm not sure in your situation. Um, yeah, but we can chat about a lot of these surgical conditions. Burns is also a very big one, I think with winter coming up and a lot of people not having access to electricity, there's a lot of, um, fire burns. Uh, yeah, wood fire burns that we're seeing at the moment. Um, last year we had a lot of Children dying from these when you have load shedding. I can't remember are these in inverters or something? Just blow up these substations blow up. So we've had a few Children getting electrical burns from those. Yeah. I'm sorry, I can't think about anything else currently what we have. I'm happy to discuss. Um, this is just before we end. So I just wanna go through a few case studies and show you how the different scenarios with the surgical team ended up being handled. So this little girl was actually seven years old. This was actually a seven-year-old girl that actually presented to her doctor with pleural and cardiac effusions. And they unfortunately didn't send it off for histology. So nobody knew what was going on. She presented with shortness of breath, cough and chest pain. And this happened twice before they actually sent her, they put in pleural drains, they put in an um pericardial drain and then they sent her for an MRI scan, which actually showed a massive tumor pressing into her thoracic duct. And next to the S VC took a biopsy and diagnosed her with NHL T cell lymphoma and she started chemo and radiation. She actually got a lot worse um had neurological fallout and then they found massive tumors in her brain. But this is what she looked like prior to all of this happening. And then he decided to uh debulk the tumor and sorry, I'm just going back to sharing you, you, you're still sharing screen. You can just go to the next slide. I just can't see anything on my side. So I'm just gonna reload it. If you are battling with the slides, you can just talk. So I'm not sure where we were. Um Yeah. Is the slides? Uh Can you see the slides? Yeah. Are they moving? Uh Not after the last one, this is the girl with T cell lymphoma before she was diagnosed uh sitting in the front car seat so you can just continue talking if the slides are not moving. Oh, there we go. And yeah, unfortunately, they decided to, they decided to go ahead and debulk the tumor. Um, it wasn't discussed with the family about the poor prognosis and the long term outcomes. And she came out of theater. She was pretty much comatose. Um, she wasn't breathing on her own. So they ended up doing a trie and a pig and she had all these long track signs, neurological fallout. And again, none of this was discussed with the family and they were left with this child. And then the doctor told them there's nothing more we can do. Unfortunately, this is now your child. You've got to decide either to leave her in hospice. I mean, in hospital re extubate and she dies or you can decide to take her home. Sorry. And yeah, the family wanted at home, they managed to get a home vent. Uh we had a feeding pump for the pigs and um she died at home surrounded by her family, but this was very disconcerting and very upsetting for the family to watch her in the state. Um This was uh another case that I had come across. He was one of a set of twins and the other twin was completely normal. He had something called heterogeneous gray white matter interface and a very big seizure disorder. Um They decided to do a carpus colo uh colostomy on him. The family consented, they consented to the trachea, they consented to the pig. The doctors here were very good to them. They did their research together. They went through all the possible outcomes, all the possible um long term side effects, whatever it was the family discussed. So this was a family that is very well informed about the surgical, about the surgical decisions. Um He was actually sent home as well like this. So you can see him down there in the middle. He's with a track on a home vent. The family. I love him having him at home. He's about nine years old currently and he's doing very well at home. The family have this idea of quality of life down to a pat. If they need to go anywhere, they take him with his home vent with his oxygen backup. They've got a full time helper. Um They go on holidays, they've been down to the beach, they've gone overseas with him and he's actually living his best life and nobody expected this of him after everything but quality of life. Is what everyone wanted, not just for him, but also for the family. And I think they've got it at home just, I'm just gonna play this for you quickly. He gets his own uh ot and physio coming home to him and this is how he started. You can hear, see that he's actually, he's blind, but he's actually reaching out for the buttons and pressing and creating right and movement. So this was a family that was very well informed and had good quality of life, still have good quality of life based on their surgical outcomes. These are two little ones that we've had at our facility at a step down facility for a long time, both with congenital hydrocephalus. Um The one on the right hand side had dandy walker three malformation. The one on the left just had a congenital hydrocephalus and both were told that um PP shunts wouldn't be acceptable in this in these cases. And feeding tubes wouldn't be acceptable. But I always tell surgeons, a feeding tube or a pig is a palliative procedure. We still need to feed Children at some point. And with these hydrocephalus, we get a lot of pressure sores, a lot of issues with them. The head is so big that these Children can't sit and a shunt in this case will also be a palliative procedure. But alas it wasn't done. This was a little one that just turned a year old. He was diagnosed with a Meningomyelocele at pre antenatal. So mom was very aware of the diagnosis. She was not amenable to the diagnosis. She was very much in the child came out and she absolutely refused surgery. Um We counseled her extensively. She knew about the prognosis. Um We offered her, we spoke to her about the surgery, about removal of the men, uh about the removal of the meningocele and addition of a VP shunt. She absolutely refused. The doctors actually told her this child will die not long after either because of sepsis. This was an open MMC or from raised intracranial pressure. And here he is, he just celebrated his first birthday yesterday. She's actually doing very well. So take home message. We need to understand that palliative care is very distinct but very closely related to hospice care. So, palliative care is where we work in the hospital with a team and we talk about both uh bad prognosis and good prognosis. So tell patients, it's like we're walking down the road that's going to be split. So either we have a good outcome on the right hand side or we have a bad outcome on the left hand side. Either which way we are here to walk that journey with you. Hospice care is more in an institute and it's more determine ill Children. Yeah, with palliative care, we work with Children that have life limiting or life-threatening illnesses. Palliative care is very compatible with long term survival. Um, I've got a lot of Children that I saw at birth that weren't going to do very well. And yeah, they actually grown up. They're like 10 years old, 11 years old currently and doing very well at home with good quality of life. And that's what we always aim for is quality of life. Every patient is different. So you've always got to tailor your conversation and your approach. No, two patients are the same. Remember that we're not talking about palliative care, but palliative therapy, there's always a therapy that we can offer that will be of benefit to the family. 50% of Children that undergo surgery mostly during terminal hospitalization. And there's a, that's where we see the most palliative care consults on a good day. I have, I think like three or four consults on one of these days. The way we see a lot of these terminal visits I could have up to 15 and a lot of them are just for family support and counseling, family support and counseling. Um I tell everyone I'm not a social worker. So you have a palliative care service, just use it efficiently. But we get a lot of Children that are terminal a post-surgery. It's very good to refer to palliative care, but it's also so late. We, as I said, time and time again. It's not good to refer so late to refer from the beginning. There's often a strange, strange, very strange love, hate relationship between us and the surgeons go to palliative care is not an ability, but it consists of strategies and techniques that even any surgeon can use. And it's all about comfort, comfort for the patient, comfort for the family. Um I've said this before. We do things very badly in an ICU setting. We have limited vi visiting hours. We don't allow parents to hold their child for risk of disrupting sutures, for risk of disrupting colostomies. Things like that just allow the families to hold their Children, allow them to take pictures because these are the only pictures they might have, um, symptom relief. So if you don't have any, um, what you call it Emla, you should be, every hospital should have Emla. It's on the Edl oncology units, have it. So we should be able to have it at all. Wards just remember to use Emla, preoperatively, postoperatively, pain control in neonate, use sucrose. So if the mom is there, put the child on the boo, oh, allow them some bonding. So I've often had cases where the Children have a seat and the doctors have told the mom the child can't feed and she's not allowed to feed. And we've had, it's a first time mom that hasn't held her baby before. That hasn't had a picture with her baby that just wants to breastfeed for the bonding and for the experience that milk is not gonna go anywhere, it's probably going to come out again, but just allow the mom to have that moment with her child, allow her to hold the child. It's all about that bonding experience. Human contact, human touch is a wonderful thing. So take that into note, please. Um Here's another one American. I found this quite interesting. The American College of Surgeons came up with this little, I think it's an online um guideline for surgeons. It's called a surgical Palliative care book, a resident guide. And this was done in 2009. I haven't found anything newer, but it provides interactive guidelines about palliative care. So it's a lot of pain and symptom management, artificial nutrition and hydration when to feed, when not to feed um discomfort, feeding, like breast milk in an N EC totalis. What is palliative surgery or what are surgical conditions that are related to palliative care, cross cultural encounters? Um We allow some go to come in, we allow priests to come in. So how do we get across all of that uh communication skills, which is a big thing, family meeting, CPR and DNR status, a lot on spiritual care. And the big thing currently is selfcare and burnout when to recognize what you're going through and when to ask for help. And if anyone needs any other information, any other resources, there's a patch academy which stands for the palliative treatment of Children in South Africa. The academy is where we have little case scenarios where we have books that are online that you can access, read, there's journal articles, there's information there for either caregivers for doctors, for nurses or institutes. Um and you can access on there. But what I want you to bring up was the, the formulary. So we have a very good formulary if you don't know doses of basic things like Pardo or Nurofen, even cloNIDine using a lot of cloNIDine and methadone. Now for pain, go onto the website. Look at the formulary. There's all the drugs, there's all the doses indications and contraindications and that's where we are going to end. Thank you, everyone. Thank you. Thank you, Vena. Um It was really an inspiring talk and, and you're really doing a very good work. Uh We can really sense that you, it's not your job, but it's your passion and all it's your mission. And uh the talk is extremely appropriate because uh last week itself, we had a very difficult situation. A young uh 42 year old mother. Uh she died uh during uh a difficult cesarean delivery, she needed uh emergency hysterectomy and she died soon after. And the baby developed a totalis. The surgeon didn't get or didn't need to operate on the child. But uh there were two families, one was father's family, father and his family. They were completely understanding and the mother's family, obviously, they were traumatized grieving and there were uh blames et cetera. So we ourselves went through a lot of uh can I call it distress uh with that situation? So, so again, um there are, there are nice comments and some questions which I will go through. Uh But just one thing I think uh you spoke a lot about spirituality and I think we doctors need to understand that we are supposed to be healers and a doctor in whom you can have trust and faith like the good old family doctor, I think the healing is better if you are being treated by that doctor. So I think that is very important and and uh I'll ask comments from the senior colleagues who are are um in the audience and just one book which I would recommend to those who have not read it. It's by Dr Atul go. It's called being more and he speaks clearly about death because as they say that there are only two certainties in life. One is death and second is tax. So we should not be afraid of talking about death at any stage in the life. So I think your talk was really very good. Um There are, there are few, there is a uh there are, there are comments from Doctor F Man Ali who is a pediatric surgeon from Pakistan working in Oman. But there is a very pertinent question from our medical officer, Doctor Kirsty Pedersen, who really was in the cold phase of this case last week. So she's active. We are telling we are busy people, surgery department and do not have access to palliative care teams or professionals. What ways can we look to provide palliative care when we as surgeons have very little team or time, she probably means available to counsel families and continue support for them, et cetera. So, uh you tell me a good question. Um Kirsty, what we do as a it comes back to the patch website. So there's uh online books that doctors can access to get a bit more help with palliative care. Number one, you get to learn about palliative care. There's a self questionnaire afterwards that you work through to see if you're right or wrong, but that it gives you the basic knowledge of palliative care. The other thing is obviously go back to the patch website and there is always somebody that responds to the messages and what we generally do with people that need support and counseling in other areas where there's no palliative care provider is that we look at outreach whether if there's a close provider near, near you or somebody else is willing to help and we do it remotely. But um yeah, that's how we generally do it. And we ask even there's a social worker, even if it's a lay social worker or a counselor in the area to support the family. Uh Yeah. So reach out on the patch website. I mean, doctor uh Chit has my cell number. I'm willing to help however way I can if you want a whatsapp or call them, that's the way we also do it. I hope that answered. Yes. I think it does answer her question me. One thing I wanted to ask you is, um, is palliative care under any of the colleges of Medicine? Is it not yet? Pro so, so, you know, I think if you become part of the CMS A, then there is, uh a lot of advocacy going on through CMS A because I'm the member of the Council of the College of pediatric Surgeons, but I'm also a member of the health policy subcommittee. And that subcommittee is now advising the National Department of Health about the policy matters and that has good reach to the highest authorities in the National Department of Health. So I think the sooner you come under the umbrella of CM, it will assist you uh about, about the policy matters. Uh There is a nice comment um um off, I just want to add to that. Yeah. So when they were looking at adding palliative care to the CMS A, they wanted it to fall under the family uh physicians under the family medicine group. I see. Uh and that entailed the Peds guys going and doing the medical course. I mean for adults. Oh, I understand. So we were trying to move it across to p and I'm not sure how far they've gotten. I'm actually having a meeting with Proia tomorrow and maybe we'll find out. Yes, I think so. I think obviously pediatric palliative care needs to be under the hospice of College of pediatricians of South Africa. And there you are likely to get better support. I think it's Doctor Mira Men who is a pediatric surgeon in the United States. And she says it's a great talk on a sensitive and very pertinent issue, but she disagrees completely with the observation that surgeons are not empathetic. And one of the reasons why there are no surgeons in palliative care is because often the surgeon are stretched thin between trauma and operating room and acute care and all kids deserve equal attention. But a bleeding or a dehydrated kid may need immediate attention. I think what she says, uh maybe uh may not, I can say that pediatric surgeons are more empathetic than adult surgeons, actual surgeons. Yes. Yes. I said this came from, this was all the research. Yeah, that from all journal articles that I could find and it all came down to the same thing that yeah, they're not empathetic and we need good communication skills. I do apologize if I have no, no, no, no, no. I think that's a general observation. But we pediatric surgeons take pride in saying that we are children's doctors first and then surgeons. And uh I am really very proud of our small team. We have four consultants, four registrars and six medical offices. Most of them women, all of them want to become pediatric surgeons and we really do all our best to give proper communication, make sure that the patients understand what is being done to them. And we don't do it in a pattern way. We sit down uh on, on the same level and we get interpreters and we talk to them in, in uh or interpret them in the language which they understand. It's just that, as you correctly said, it actually reserves a lot of to in a lot of burnout in the young doctors. And I have gone through it myself in the early part of my career. These end of life decisions are extremely difficult, uh stressful and actually traumatic. So and and we are obviously we don't have professional counseling. We probably counsel each other. So, so I think that that's but, but we now know who to ask for advice when we are battling. I think I need to ask uh senior colleagues for their comments. So I see Professor Nevele Sipal is here. Uh Professor Sipal is in, in University of Limpopo. So Nevele you still around? No, probably he has dropped out. Then I will ask uh doctor Nicola Masha who is our junior consultant. You probably know her, she trained at Bara Knox. Any comments. Knox. Yes. Is she here? Uh No, probably Knox is also not here. Anyway, then I'll ask Doctor Selo Mataya who is on leave, but uh he's still attending the talk. I think, I think mainly because we had that discussion just last week. Sell your comments. All right, thanks. Thanks, Bob. Thanks for the talk. Very. Um enlightening. There was actually a national uh P plan that was trying to be initiated about two years ago. It was Mary Arnold and I think uh Michelle Hering. Um yes and not sure where it ended, but it was a good initiative where they were actually trying to formulate all all the amongst the surgical disciplines, particularly how to best palliate these patients from surgery to neurosurgery to ent. So it was quite all-inclusive if I can say and it was actually gonna change the game just that it lagged here and there most likely it will pick up later. Um What I wanted to ask though is palliative care and pain management team. Same thing. Different thing. Oh, in, in Red Cross down in Cape Town, they have a palliative care team and a pain team. But everywhere else, we just, we all just do it. It's the same thing. Oh OK. No, because that's the one thing that uh when whenever, if you were to mention palliation to anyone in the team or even to the family, it means it kind of gives the wrong impression that you're dying. Yes. And that's obviously the switch you need to kind of change where we like. No, it's not dying. It's optimizing or optimizing comfort. Maybe. Yes. And making things a bit more streamlined. But, yeah, I think it's, it's very challenging thing to deal with. Um, it requires a lot of manpower and sacrifice and lots of financial, um, incentives which unfortunately you're not getting and you're showing the dedication you have to what you're doing. Shame. Um, but yeah, shame. Good. My mom tells me I'm gonna be that poor doctor, but I'll get rewarded. Spiritually. It's, it's, it's ok. Karma. Karma will pay you back. Um, unfortunately, the government wont. That's all. Um, one of I had a, we've got a, we've got a VIP Malawian patient uh at one of our hospitals and they are very resistant to palliative care because they understood it that the child is going to die. They've turned away the psychologist, the counselor, everything and the approach to getting them to understand about palliative care. And why is it important? Uh, the doctor actually used the term comfort care or the comfort doctor is coming to talk to you. So make sure that you are comfortable with everything your child is not suffering. So getting you've got to, yeah, use the words appropriately. Comfort is a, yeah, I think you are very right on that saying. You've got to change the words and use the word comfort. I think, I think that's a very good word. Comfort, comfort, care. So that's comfort for the family, comfort, for the a child, comfort for the family and comfort for the treating doctors as well because if somebody else is, is uh dealing with it professionally, then we surgeons, our burden is a bit relieved. Um Me, I'm finally, I'm going to ask uh comment uh comments from our senior consultant. But before that, I want ask you one question, your photographs and the videos they show complete faces of the patients and the families. And so it was uh all given all consent from. That's fine. That's, that's I just wanted to confirm because then I uh upload these videos on youtube and then made all platform and it will also go on the College of Medicine uh e learning platform. So you are OK with that. Yes. OK. Thank you very much. So, the last comment I'll ask is our senior consultant, uh Yashoda man. Uh she is a very spiritual person herself. So Yashoda, any comment. Hi pro thank you. Uh Thanks mena for that talk. The only thing I'll correct you on is that peed surgeons in my experience have to climb up from their ego to the EQ and their IQ. Sorry, that is the, that is a joke here that we, we keep mentioning. Sure. Uh But I'm actually II echo sentiments that I'm actually quite proud of our team and how they handle these cases without a palliative care team, you know, and um I appreciate your effort to help us because we will take that up uh with any difficult cases we have, but we are trying to do uh interdisciplinary team meetings before we even decide on the palliative care for each patient, which involves the the surgeon and the pediatrician. And you know, sometimes nurses, whoever else is involved with the, with the care of that patient. So I think we are doing our best in the absence of a palliative care team. That's very great. That's good to hear. It builds resilience not having a palliative care team around. Yeah. Yeah, I know it's, it's difficult and then I just wanted to highlight again. Uh what uh I think you did highlight and profited is the impact on the healthcare workers. Uh because I know, you know, recently we lost a child who was with us for uh probably close to two months with major burns and it took all the members of our team took uh quite a hard knock from that and it's quite difficult to get up the next day and to come and do it all again. So I think we do need to support each other more through these cases and do whatever we can to come together and, uh you know, share the experience and um you know, get over that hump because there's more Children to treat, there's more to do and we need to take care of ourselves as well. Yes. Yes, that's very true. Thank you. Yes. Uh I think that was, that was really very good and, and I thank you. Uh but I also thank our Abo Nadia Frea who uh joined just about a year ago and she knew you, she had worked with you. So she uh advised me that we must invite you to, to give a talk. And luckily it has come to, to effect and, and we're really very happy and we will not bother you in the middle of the night, but we will take up and we will ask your advice at least uh in the cases where we are battling with such decisions and, and procedures. So thank you again. And uh and I hope to see you uh one day uh maybe in East London so that we can arrange something like a seminar or a workshop about palliative care in Children. And uh and thank you and have a good night. Thanks Bob. Keep well. Thank you, everyone. You and uh in a month's time, we will have another interesting talk by a cardiothoracic surgeon from Nelson Mandela Children's Hospital in Johannesburg. It will be about CMO its relevance to Africa. Thank you all. Bye-bye. Thank you.