Michelle: can't do this job without feeling some emotion. It is really, really tough at times. But my role is to make an awful time less awful. So even if things are really bad for a family, I've got to say, how can we make this a little bit better? I want you to do everything. And then they will also say to me, I want my son to die at home. And the difficulty is we can't actually do both. We can't do resuscitation and a blue light to an ambulance and also have someone dying at home. So we need to talk to people honestly. paint a realistic picture of all the options, work out what is sensible and what isn't. I don't want death and dying to be something that we only talk about when we're very ill, because that's when we're very stressed.
David Birchmore: Yeah.
Michelle: I want it to be something we do chat about over the dinner table in a very normal way.
David Birchmore: Hello and welcome to Get a Shift On, a podcast all about career change and sharing amazing stories from people within healthcare. Today I'm absolutely delighted to welcome Dr. Michelle Hills, who is a paediatric palliative care consultant.
Michelle: thank you for having me David.
David Birchmore: just for everybody listening and or watching, can you just give a brief introduction as to who you are?
Michelle: Yes, so I've been a doctor for nearly 25 years now and I started off as a paediatrician and then realised I had a particular interest in palliative care and I've been working as a paediatric palliative care consultant and I work both in hospitals, hospices, well actually also in the community, wherever the children are and I also have had quite a role in medical education but the book is a new part of my career.
David Birchmore: where did it all start for you? When did you decide to become a doctor and what was that journey that you went on?
Michelle: knew I wanted to be a doctor when I was quite young actually and it was strange because I was so committed from that young age, know, choosing my GCSEs and my A levels so that I could do the course I wanted to do. But what was particularly interesting is I didn't go to university to be a pediatrician. I went to be a general practitioner and I have a huge amount of respect for GPs but I soon realised that actually that wasn't for me and I preferred having longer... with my patients and really getting to know them. And I just fell into paediatrics because I enjoyed working with children. Children just want to be children, they just want to play, they just want to feel better. And as I started doing more more paediatric jobs, again, I just realised that there was so much more we could do for children with really complex medical problems and a really uncertain future. And I just felt we weren't really... serving these families as well as we could and I just became really dedicated to helping those children and those families.
David Birchmore: You said to me off camera and in the information about yourself that you ended up speaking in Parliament and that's when there was something that triggered in you around palliative
Michelle: Thank
David Birchmore: care and looking out more for these families. What was that?
Michelle: Well, I gave a speech at the Houses of Parliament at one of the sort all-party parliamentary group evenings and I told a story. Now, I always make the stories confidential, so change a few details, but I told a story and it really connected with people. And I realised that if I want to educate people about what palliative care is and the challenges we have, I need to connect with everybody and to do that. I need to do storytelling, I need to tell narratives. If you just tell somebody about something, it feels distant, it doesn't feel relevant. Whereas when you suddenly give that child a name and a family and a situation, all of a sudden people realise, goodness, this could actually be something in my life or my friend's life or I know somebody where something like this has happened. I just suddenly thought, I need to share what I'm doing with the public. because I can only serve so many children and families that I see in my clinical practice. And I've already got into medical education to try to teach other professionals about palliative care. But really we need the whole society to understand what it is. We need society to talk more openly about death and dying. It's still a big taboo in this country. And I felt people didn't really understand the wonderful stuff that palliative care offers, all the support all the music therapy and play therapy and art therapy and things that are aside from what the medics are doing but really improving people's quality of life. It's about living and I wanted to get that across in a way people could understand. So yes that talk at the Houses of Parliament did sort of lead me to want to write a book and that's where the wrong order of things came from.
David Birchmore: Can you define palliative care for us, so we all know where and what we're actually talking about?
Michelle: Absolutely, I mean there are lots of different definitions of palliative care but the thing that comes across really strongly in all of them is it is a holistic supportive care. So it addresses the physical but also the psychological and emotional and spiritual aspects of care and it is for people who have a condition where they are likely to die early. So people with short lives and the thing that is so interesting about the definition is it really goes from the point of diagnosis, and actually sometimes that's just recognition of a disease because we don't always have a diagnosis, but it goes from that point of diagnosis all the way through to death and bereavement. So the end of life is a small part of it, but it is only one part. So I always like to think of it as this holistic care for people with shortened lives, but really throughout the whole of that illness and afterwards.
David Birchmore: When it comes to children and I presume adults as well, really to a point, but are you talking about the families and how they manage and work through the diagnosis themselves as well?
Michelle: Absolutely, I mean the child will always be at the centre of what I'm doing and actually for any parent they will want that because the child is the most important person in their world, but we absolutely help look after the whole family and often that involves just really good communication. So listening to people and understanding what are their worries, what are their fears and what are their goals? Because actually there are always so many different treatments we could offer. And some of them may be helpful, some of them may just be too difficult for that child to endure and parents need to have a voice. Parents need to be able to say what they do think their child can cope with and what they don't think their child would manage with. And I feel really, really strongly that everybody just has to have that open communication, that working together collaboratively with the child, the parents and all the different professionals involved. So you have that team. If I'm looking after a little boy called Daniel, I will say, Team Daniel, we are here together, one team, to try and work out what we need to do. And the parents, obviously, are key to that.
David Birchmore: Incredible. You mentioned fears and worries. What are the usually the biggest fears and worries, either of the child or of the parents?
Michelle: biggest fear for any parent is that they will lose their child. Nobody expects their child to die before themselves. People expect to bury their parents but not their children and that is a huge fear and I often hear people being reticent to have referrals to palliative care and I always try to sit back and listen. What do they understand by palliative care? Because usually when you get down to it what they're scared of is their child dying. If you explain to people, we're not going to take over the care, you'll still have your cardiologist or your oncologist or whichever other professionals are involved. We're just there to add this extra layer of support. We're here to try and manage those symptoms, try and make sure that she's not in pain, that he's not vomiting, that his seizures are better controlled. All of a sudden parents think, well, why would I turn down something which is an extra level of support and care? But it's that fear of loss. There's many other fears as well. And sadly, I sometimes hear families say to me they're worried what will happen to their child if they themselves die before their child does, because their child requires so much support and care and advocacy from their parents. And actually, fears can be so varied. That's why we have to ask, because
David Birchmore: Thanks.
Michelle: it's different for different people.
David Birchmore: Yeah. And hard to share that as well. I think like you said really getting down to what people really mean. And I think that comes back to the communication bit that you mentioned as well. What is it when they're saying no to something or pushing back against something that they're really saying and trying to communicate with you? It's obviously very difficult subject to talk about for lots of people. And you said that, you know, we have a strange relationship with death in this country. Do you think that is UK specific or do you think it is wider across the world? I know it depends on culture.
Michelle: you depend on culture. I mean I can't claim to be an expert on cultures all across the world because I've spent my whole career working in the United Kingdom. But I think many cultures struggle talking about death and dying and I think it's interesting even hearing you introduce this podcast because I recognize people will have experiences that make this difficult but rather than avoiding listening and avoiding talking I would encourage people to go gently, but to engage because people often have stories they can share and lived experiences that can help other people. And the way this book is written, it's not a textbook, it's not all sentimental, but it's not all melancholy either. It has a whole number of stories that in many ways are quite uplifting. I will look at a lot of beautiful lives. and funny things that happened and things that we did that truly made their lives better. And then I will also look at how can we make a death peaceful and how can we make that death occur wherever somebody wants it to be. And in the book, I talk about a child who died at a football match and actually what that meant to that family. I talk about so many different scenarios. I also talk about my own family and my own grief and bereavement and my own pets and my own children. The reason I've done that is because I want to make this human. I want to make it real. I want to make it so people don't feel uncomfortable. People just talk about these things normally. I don't want death and dying to be something that we only talk about when we're very ill, because that's when we're very stressed.
David Birchmore: Yeah.
Michelle: I want it to be something we do chat about over the dinner table in a very normal way. And it always blows my mind a little bit that people don't know. whether their loved ones would want a burial or a cremation or what they would want at their funeral or whatever. They just don't have these conversations. And if we can't have these conversations with very elderly people, how are we ever going to have them with younger ones?
David Birchmore: Agreed. I think it's such a emotive subject. I think we are my family, we're quite open. maybe with the background, you know, coming from oncology. My father was also a vicar. So from a very young age I knew that he was doing funerals. he also died very suddenly with a very short illness in two thousand and nine. but everything, just going to your point there, was planned out. He had an envelope on his desk with everything. And I know my mum has the same. And actually, my wife and I talked about it the other day and said, actually, we need to get housed together. Because then it's there. And we talked about with the kids. And actually, we talked about cremational burial with the children the other day. My eldest is 16, my youngest is 10. And my eldest said, I want to go to Tanzania. I want to have my ashes put under a tree in Tanzania where she spent a month last year. Yeah. Interesting.
Michelle: how beautiful.
David Birchmore: Really, really interesting to kind of touch on those subjects. You know, with teenagers that grump around. And spend far too long heads down on their phones. But when we open up about it, I think we you know a and there is probably a bit of a black humour for us in our family as well. I think again, coming from the background, you have to have a bit of a laugh and a joke. And I think the language that we use is important around that. And I think your book is so important because when you share those stories, you said you make it human. And I think that's absolutely the key to it.
Michelle: . .
David Birchmore: When you were writing the book and the stories you use in it, were they stories that you had already written down somewhere, or was it just something that you'd remembered and kind of thought back on?
Michelle: I have looked after thousands of children over my career. So when I wrote the book, I sort of pulled on experiences for many, children. And actually, even though the children's stories read as Bella's story, Noah's story, Hamad's story, they're not really one child's story. I've pulled out themes and I've combined children together to make a story that doesn't kind of damage any confidentiality or trust or any professionalism there. But I wanted to write stories that cover different aspects of children's palliative care. So I did sort of make sure that I included some things about knowing when to stop treatments or knowing how to manage symptoms or dealing with fears. care after death. And then I wrote the child's story so that I could bring out all those themes. The only bits of the book that are 100 % true are the bits about me. So I talk in there about sitting with my father when he was dying and talking my husband through what death looked like because he had never seen it before. I talk about conversations I have with my children. And it's interesting to hear what your children said because my daughter has this idea that when she does die, which I hope is not for a very long time, she wants people to do three roses and a thorn. And this is something I used to do at bedtime with my children. We'd go to bed and we'd say three lovely things about our day. And one thing that was frustrating or annoying or upset us. And it might just have been that a child didn't sit next to them at school or whatever. And she said, when I have my funeral, I want people to do that because people always tell you the lovely stuff. They never tell you what annoyed them. And she said, I want everyone to say three things they loved about me and one thing that drove them mad. And I just thought, how lovely.
David Birchmore: Yeah. And also I think from a parenting point of view as well, hearing that, you know, you probably did that at bedtime thinking and hoping that, you know, it might stick at some point. So to hear that back, I think it's one of those moments you go, they do listen.
Michelle: You know, there's so much of the book, The Wrong Order of Things, where I talk about comments my children have made and I realise I have heard myself back. And it's actually beautiful because it shows that they have listened to the importance of kind, honest, but open communication. I mean, I give a little scenario of a friend in my book who honestly thought his hamster had lived for his entire childhood. and he got to university and he didn't realize hamsters didn't live that long, but Fluffy had been replaced periodically by his parents. And he felt really silly. And I thought, again, if people aren't talking about these things with an animal, how are we talking about it with our loved ones?
David Birchmore: Yeah, I s I think the conversations again, you were talking just now about having those conversations and people saying how tough it must be, etcetera. My background is in radiotherapy, so obviously I treated a lot of people and a lot of people under palliative care who are very close to end of life. And actually people would say it must be really depressing, it must be really sad, those people must be really ill and actually, as you'll be well aware, so many people are actually s far from it. You know, they are Living as best they can given the circumstances. And actually, quite happy, Josh. And I remember one particular old lady, she was incredible. She was very close to end of life. And she was just the most lively, bubbly person, so positive, so happy about everything. and and at the same time, by distinction, there was a chap who's having prostate cancer treated. Fine. In all fairness, he was, you know, absolutely fine, very curable. and he was such a miserable bugger. it was such hard work. E and they would come in kind of all together for a few weeks and it was just really hard to kind of see. And it always reminds me that actually, yes, it's sad, yes it's hard for us that are left behind, but actually there is a lot of positivity around it. And I think that's the bit that is so important.
Michelle: I mean many of the children that I care for I look after for years and years and years and we have some children we transition to adult services or discharge from our services because they do well and that's the thing I need people to see you know when children come to hospices they can go in the hydrotherapy pool they can go in and watch a film at the cinema they can go in the sensory rooms they can do wonderful trips out they there's so much positivity But we also have to recognise that there is sadness too and families are having to deal with the biggest worry of their lives and every family is different and every individual within that family will be different. So when you talk about a gentleman who's grumpy and cantankerous and you talk about a lady who's full of life and energy, I need to respect all of those ways of living and actually we are all so individual and have our own emotions and our own behaviours. My role is simply to hear what it is that families need and try and help them through that. But yes, you are right that there are so many beautiful moments too. And we need to get those right, but we also need to get the end of life right too.
David Birchmore: Is there a time frame on palliative care? Are you calf touched on it there? But I think maybe that is a misconception that people have. You know, is there a set time where someone is into palliative care? Because if you're moving people to adult services, maybe people are misunderstanding that actually it's not imminent. You know, death is not imminent within palliative care, but there is a span to it.
Michelle: The difficulty is that different services run things differently and I think adult palliative care probably does have people closer to the end of their lives because there are just so many more adults who are dying. But I think in children's palliative care services, people will often accept children much, much, much earlier. And you're right, that misconception that it's just about the end probably is a barrier to referrals. But we try so hard, rather than dwelling on the myths, just trying to show the positives, showing what we can add in support so people can see it for themselves.
David Birchmore: I think with the book from what I'm understanding that really shines through. And that
Michelle: Well, it's been lovely actually. The book has only been out for a week and I have already had so many lovely reviews from professionals, from parents, from complete lay people who've had nothing to do with children's palliative care. And people really are having their assumptions challenged. And I love that. There was somebody who'd written a review saying, I bought this book to go on holiday and then thought, no, I won't take it on holiday. I've read it already and I haven't even gone to hold it yet. It was so good I couldn't put it down and people saying they thought you know they wouldn't be able to read it and they've absolutely loved it and read it in two nights. It is a book that will make you cry, have some tissues at the ready and there will be times when it also evokes things that are deep in your own emotions because of things that have happened in your life but it is also full of joy and that's what I want people to understand. Life is for living and this is a book that helps us all understand what's important to us, helps us recognise what we are scared of losing, but also helps us plan. I just urge people to pick it up really and give it a try. Every chapter is a different story, so you really can just dip in and read a short piece and you become quite invested in these children's lives. And the thing you have to remember is even if they are a composite of different children, all the things that have happened in this book have happened to real.
David Birchmore: Yeah.
Michelle: people.
David Birchmore: Yeah. I think that's so amazing. I look forward to reading it. and I'll say it now and I'll say it again later. There will be a link in the episode description and on all of my posts that link back to the book, so I hope that people will come and buy that for you. You mentioned crying. Have there been children that you have cried about?
Michelle: Yes, they have. And actually I talk in the book about early on in my career feeling very emotional and very tearful and how you do have to learn that there are some boundaries we have to maintain and we have professionalism to maintain and it's okay to show emotion but you can't be there with parents supporting you. You need to have that balance. But the reality is some of what I see is hard. And sometimes I would come home from work and my children would be asleep and I would stand at the door and I would just look at them and watch their chest going up and down and just realise how fortunate I was. You can't do this job without feeling some emotion. It is really, really tough at times. But my role is to make an awful time less awful. So even if things are really bad for a family, I've got to say, how can we make this a little bit better? And whilst I always say loss and grief is horrific, mean, living without someone you love is a gaping hole, it's awful. But the process of dying itself is something that can be incredibly peaceful and incredibly gentle. And if I can explain to people what it will look like. If I can manage symptoms so that a child is completely calm, if we can make sure we're doing it where they want to be, whether that's at home or in the hospice or in a hospital, I can help people have a bereavement that is a little bit less awful than it would have been otherwise.
David Birchmore: And you touched on earlier because you said you sat with your father while he was dying and explained it to your husband who'd never seen anyone die. I was with my dad when he died. And I think I I remember it obviously very clearly. the whole he was sick over five days. So it was a very quick process. the end was actually very peaceful. Yeah, I have seen people die before. Do you think getting that message out there that death is not always a horrendous, dreadful experience for children, for adults, for anyone, is really a big part of the story that you're sharing?
Michelle: It's one part of the story I'm sharing. It's not necessarily the biggest part because there are so many messages I wanted to get across. But I think the difficulty is people get their perception of death and dying from the TV. And in movies, it's always very dramatic and there's always some final statement that someone says and then, you know, it's all very poetic and very loud and, you know, the music changes. The reality is that's not the death that I see. So I just felt it was an important part of the book to talk about, but it was just one small part. I wanted to explain so many different things. Like a lot of people don't realize palliative care teams can become involved very early on, even if a baby's not yet born. So you may have an antenatal scan at 20 weeks and they may pick up a medical problem that's very severe. And people don't realise that hospices, palliative care teams can meet with you, discuss your options, look at what the birth might look like, look at what might happen after birth. You know, so many messages like that that people just don't know about. You know, I talk in the book about care after death. So sometimes when a child has sadly died, families actually want to spend a bit of time with their child to say goodbye calmly and peacefully without monitors, without tubes, without all the equipment. They just want to be able to sit there and hold their hand and tell them they love them. And I wanted to explain to people that that's possible. And people don't know that that's an option. So there were so many parts of the book that hopefully will be new to people and will make them think and will make them learn, but learn through storytelling, learn through just reading about these children's lives.
David Birchmore: You're so right there. I think what we see, what we perceive it to be like, is so different to the reality.
Michelle: one of the challenges is that in society we do often think death is failing and as a human we are always looking for something else that we could try and I don't blame families for this at all. Of course we want to make sure we do everything we can to help our loved ones. But there is always something you could try. There is always another drug, another operation, another different feed type, another regime, whatever. There is always something we can try. And one of the things I do talk about in the book is knowing when we have tried all the things that are sensible to try. And the difficulty is it's very hard to have a peaceful, dignified, natural death if we are still desperately looking at all the options available to us. because if we always dial 999, if we always go to hospital, we will always have a death which involves resuscitation and people being pushed away. And that's really hard because sometimes that's the right thing to do. But I wanted to challenge that thinking and make people realize that sometimes we do have to accept that we can't save someone. And now we need to focus on making sure that death is peaceful. And I actually tried to do quite a few videos about this on social media just to kind of explain the things to people because people just don't, people don't know. They will often say to me, I want you to do everything. And then they will also say to me, I want my son to die at home. And the difficulty is we can't actually do both. We can't do resuscitation and a blue light to an ambulance and also have someone dying at home. So we need to talk to people honestly. paint a realistic picture of all the options, work out what is sensible and what isn't. And people often think palliative care teams will come in and just talk about death and dying. And I will often be advocating for treatments. I will say, well, this child's got a great quality of life. And actually, when I see them at the hospice, they're having a wonderful time playing. I think this is correctable. I think we need to go to hospital. We need to get this little blip sorted. And I include stories about that in the book. I talk about little boy Fred and how his mother was scared to go to hospital because she thought people wouldn't treat him. But actually, even if he's dying, he might not be dying quite yet, there may be things we can correct. So yes, there's so many different aspects to palliative care that I wanted to get across.
David Birchmore: I think yeah, it I'm I'm so inspired just talking to you and again I look forward to reading the book and seeing these stories. And maybe we'll have to have a catch-up afterwards when I have read the book and I'm sure I have a whole load more questions for you. This isn't where I was going, but since you've said that, I'm interested and and my son asked me the other day around something about this. Is there a point where end of life and is there a fine balance between giving enough medication to keep someone comfortable but not enough to send them over that edge to death? And it came up with my son 'cause we're talking about euthanasia.
Michelle: That's a really, really good question because actually it's something a lot of parents are really worried about. Good palliative care involves giving medications to make sure somebody is comfortable. And actually, contrary to what people think, giving drugs like morphine doesn't actually hasten death. There are really good papers out there that if you give people really, really good symptom management, they actually live longer. And this is something people... don't realise, they think that doctors are going to come and give high doses of drugs and make somebody go to sleep and make somebody die. That is not legal in the UK. And I know there's been a lot of discussion about the assisted dying bill and so on. I'm not going to get into political conversations. I'm just going to explain what palliative care is. And that's about giving the medications you need to keep somebody comfortable. And yes, some of the medications may make people sleepy, but... Interestingly, when people are in pain, they often sleep a lot. When you manage that pain, sometimes they're more awake and they will actually talk to you and they will actually be more alert. So it's not as straightforward as perhaps your son thinks.
David Birchmore: It was a it was a very interesting conversation and it came up because of the Wrights died bill. That's he'd heard something, I don't know if they're talking about school or he'd just heard something he's he's very switched on and he asked some very deep questions, and I have to kind of put my hands up sometimes and say, I don't know. But it was that was interesting, and I kind of gave him a s a similar sort of answer because I'd asked a palliative care consultant years ago when I started my master's in palliative care. I was very interested. and we had that conversation. I was just interested to hear you say and I think it's important for people to hear that because again I think it is something that people worry about and don't necessarily know.
Michelle: The other thing your son may well be interested to know is that there is also this thing that we do in medicine all the time which is stopping a treatment. And we may do that if somebody has cancer and the chemotherapy is no longer helping, we may say we're not going to give this chemotherapy anymore. But we also withdraw treatments like ventilation. And this is 100 % legal in this country if a treatment is not helping someone. If we are doing something which is futile and someone is having pain and suffering as a result of what we're doing, we do not have to continue that treatment. So people can have their ventilator taken away, maybe even in a hospice or at home, it doesn't even have to be in a hospital. And they can be allowed a peaceful, natural death in that situation. And I don't think the public really understand that that is allowed, that is legal, that is done. And that is done with love and compassion and support, with discussion with the families, agreement with all the people who are around that young person. So even though we don't have assisted dying, we do have good quality palliative care and we do sometimes withhold or withdraw life-sustaining treatments when we don't feel. that it is going to be helpful. The first duty of a doctor is to do no harm. And I hold that dear. Yes, I would also like to do some good, but the first thing is to do no harm.
David Birchmore: So important to remember. So important I think. And again, I think that's sometimes the bit that people forget and don't see. Especially look, the current climate of the NHS is not a good one across the board, you know. And I think people forget that the reason that medicine is there and that do no harm bit I think can be very and my son is interested in it. his a hundred and three year old great granny died back in May.
Michelle: All the best.
David Birchmore: And he saw her just before she died. And I think that was actually very impactful for him. He's thirteen. but I think, you know, it was an important there have been lots of discussions around it. So I'm not surprised that it kind of it came up again when we were talking about it.
Michelle: But it actually shows what a lovely open communication your family has that you can have these conversations and I really really like and respect that and encourage more and more people just to talk openly with their children.
David Birchmore: Yeah. Yeah. Thank you. And I think we we actually so we're a blended family anyway, so we have, you know, lots of different kind of bits and pieces going on. So I've got two children, my wife has two. We spend a lot of time together. That was very deliberate. yeah, we sit around the dinner table and we have conversations about things because I think it's so important. don't get me wrong though, usually not so educated or highbrow or exciting. but every now and then it comes out. And I think for me that's the important bit, is that, you know, like you said about your daughter saying about the three roses and the thorn, you j at some point it starts to come through and you know that what you're saying or what you're talking about starts to make sense. And I think that's, you know, really important. And I will leave you a copy of your book somewhere for them to see 'cause they will pick stuff up when they want to. So that's interesting.
Michelle: Do know, I had a 12 year old girl who came to my book launch. Everybody else was an adult, but there was one 12 year old who came and her mum bought the book and she got in touch with me and she said, I haven't had a chance to read your book yet because my daughter hasn't let me because she's been reading it. And she said, I overheard her talking to her friends and she said, it's a brilliant book. It's about how children can die happy. And I just thought how lovely. that a child was reading these stories and absorbing it and talking openly. And that's what it's all about.
David Birchmore: In incredible. Incredible. And that's that's so powerful. I think that's I well, brilliant. Yeah. She will learn so much from it. And if she's having conversations with her friends as well, that, you know, multiplies. It's yeah. Incredible.
Michelle: even more special because I will be honest when I first wrote the book I felt passionate about it but literary agents and publishers were a little more hesitant they said who's
David Birchmore: Yeah.
Michelle: going to read a book about children's palliative care and I had all these responses which were beautiful about my writing you know they said how lovely my writing was and it was saying how important the topic was but they all said we don't think anybody will buy this book and ultimately we're a business we need to make sure it's a book that will sell. many, many of these rejections. And when I did get my wonderful agent, he said to me, you only need one yes. And he was absolutely right, because as soon as you have a publisher who believes in your book and champions your book and signs that book deal, you you're there, but you have to have very thick skins to kind of cope with the rejections. And I think having had the sort of career where I've gone through medicine and I've, you know, made all the sort of leaps and hurdles I had to do along the way, the kind of exams and the qualifications and the various jobs and you sort of move around the country and you get more experienced and that all just sort of flowed but when it came to writing a book, goodness me, it's a challenge. So yeah, tricky but I'm glad I persevered.
David Birchmore: Absolutely, absolutely. And I hope the the ones that said no, read your book with delight and slight annoyance that they were not the ones to take it forward. Were there moments when you were writing the book that you thought or when you were having those discussions, you know, you did you ever think to yourself, Golly, I've been a doctor, I've done all this hard training, I've done all of this. Why this is so much harder than being a doctor.
Michelle: I love words and I love writing. So for me, it was quite cathartic to kind of put these stories down on paper. It was hard having a lot of rejections and I'm someone with terrible imposter syndrome anyway, so I constantly feel that I'm not good enough. But my daughter just kept saying to me, this book's really good, mum, I think somebody will take it on. And she just kept encouraging me. And I kind of thought, well, if nobody ever reads it, at least I've enjoyed writing it. For me, the hardest bit is actually the social media side. I am not used to this world of TikTok and Instagram and I have recently started and I feel very self-conscious doing videos and posting various things, but it's a whole mystery to me. The algorithm, I know nothing about it and I don't understand how one video gets 20,000 views and one gets 500. I don't understand it, but I just feel if I'm going to teach the public... I need to make myself approachable and I think I just need to do it by being me. So we'll see where that goes, but that's probably the hardest bit.
David Birchmore: It's interesting, really, really interesting. And but you're a hundred percent right. I think the the writing the book, the that kind of cathartic feeling of doing it, I think is so important. And moving that over to the social media where actually you're gonna post these videos because you want to educate people is actually vital because it's you, it's your story, you're presenting it, and whether one person or a million people see it, it's for you and you're showing that story. And that's the bit that I think you have to concentrate on. is that people will see it and people will come to it when it's right for them.
Michelle: But I'm up against so many challenges. So I did a video about morphine and I got sent some alert from the social media company telling me I couldn't do things like this and they pulled out all my hashtags and I basically got sort of pushed down in the algorithm for all this. I thought, my goodness, I'm not here talking about taking drugs. I'm here talking about educating people. So it's been a challenge, but a fun one and I'm learning every step of the way.
David Birchmore: Yeah, well that's so interesting as well, because again you say that, you know, we said earlier that death is kind of a taboo subject, it's not spoken about, and then you get those kind of blockers on and I remember working in a hospital and I was trying to do some research on breast cancer, and the hospital system blocked the web browser because I typed the word breast.
Michelle: my goodness.
David Birchmore: And think it it's just a ridiculous state that that's where we end up. And I and I I worry about social media in terms of that because actually this is the place to learn. This is what people are looking at. You know, millions and millions of people are getting their education from TikTok, Instagram, YouTube. But if we can't have those open conversations, then there's real real problems around that.
Michelle: I must admit I was quite naive. I didn't realise that many, many people do use TikTok a bit like a search engine. But it was when I realised that I thought, well, OK, I need to go to where people want to learn. You know, there's no point talking if nobody is hearing what you're saying. So I will try my best and see how it goes.
David Birchmore: I'm sure and I'm I you are so easy to speak to, your passion is clear, and I feel as if I've learnt stuff from our conversation. So I have no doubt that that will come across in that social media, but then just maybe time and the more people that review your book, you know, people it will it will happen, and I have no doubt it will be
Michelle: Bye.
David Birchmore: success. And I think it's such an important subject. When you first got that copy of your book in your hand, how did that feel?
Michelle: goodness I was so emotional. In fact I did an unboxing video which my children told me I had to do for social media and
David Birchmore: I saw that.
Michelle: did you! I was so emotional. I tried to read the dedication and I just felt quite overwhelmed seeing it and holding it in my hand after all that work and yes it was was beautiful. I just hope that it gets into lots of other people's hands now but it's also an audiobook and actually I've had messages from people telling me they've been listening to me in the bath and listening to me in bed and listening to me on dog walks and in the car. And it's the strangest thing because I knew I'd recorded an audiobook. So logically, of course people were going to listen to it. But it's a very strange thought that
David Birchmore: Yes.
Michelle: people are listening to my voice for hours. But people have been so lovely. Somebody said to me that I was like David Attenborough. I said, really? I hate my own voice. She said, no, I could listen to you for hours. And I just thought, that's so lovely. because different people get their books in different ways. Some people want the e-book and it is an e-book, some people want a paper version to thumb through, and some people want audiobooks. So I've tried to take the book to people in whatever way they would like to listen to it. And what was lovely is I saw something on social media yesterday from the first deafblind doctor in the UK, and she was showing how she was listening to the book through some technology. And I just thought, brilliant, I want people to access it in what way they can access it.
David Birchmore: She's incredible.
Michelle: Yes.
David Birchmore: Yeah. I and you're right, and I think having that access, I think we're very fortunate to live in a world where you can access that type of material. However works for someone. And I think that's the beauty of the social media side. And the fact that we can have this conversation, the fact that lots of people will see the book, see the social media, wherever they are in the world, to learn and be educated around it. I just think it's so incredible. It's so different to you know, being
Michelle: Thank
David Birchmore: stuck in a library thumbing through pages of books, which I did when I did my degree. I think, you know, there are other ways, and it that was never the best way for me to learn. But at the time I knew no different and actually things were fairly limited. So here we are in this way. Is there gonna be a follow up book?
Michelle: my goodness, do you know everybody has asked me this question. They asked me at the book launch, I did a literary festival yesterday and people asked me there. I'm not going to say never, but right now I want to focus on the wrong order of things. I want to get that book out there. I want to get people reading it. I want to get people talking about it. I've had people ask me to write another anthology of stories. I've had people saying to me, could I write a book that was aimed actually at the children themselves? I am... thrilled people have enjoyed it and I'm thrilled people want me to write more but at the moment let's focus on book one, let's focus on the wrong order of things and then let's see where things lead.
David Birchmore: I did have to ask, I knew it'd be a p I knew it would be 'cause it's a bit like being asked when you're having children when you get married, isn't it? It's one of those things that I'm sure just comes up as a natural part of a conversation. What advice would you give to anyone who's looking to write a book?
Michelle: goodness. I've had quite a few people who've got in touch with me actually to ask about writing books. And I would say to anyone, you do need quite a lot of resilience. I would want people to have that passion. I want people to write. think writing is beautiful. I love words. I love the ability to get things down in a way that other people can connect. But you do have to accept that there are so many people trying to get books published. that you get so many no's. Some people ghost you completely, some people send you rejections that are beautiful but ultimately still a no. And it's really, really difficult. I completely understand why many people choose to self-publish because they can maintain that control. And that's absolutely fine. It wasn't something I wanted to pursue, but I think if you do have the time and energy to do all your own editing and, you know, cover design and marketing and so on. That's another way you can get your words out there. It's a challenge, but it's also a wonderful thing to share what's in your head with others.
David Birchmore: Amazing. And actually I think you touched on something there that's really important for people to understand who's you are still a full time doctor as well.
Michelle: time but almost full time so yes I do 80 % and I have continued doing 80 % throughout and I have no intention of stopping my clinical medicine. I love it, it is what I do, it's what I want to do but I realised that to help more people I had to educate more professionals and then I realised to help more people I had to teach the public so my job has grown rather than shifted.
David Birchmore: Amazing. I think that's fantastic. And I look, your passion, as I've said, and expertise shines through and I think it would be a real loss for you to not do it. So I'm so pleased here that you are going to continue. Just to finish up on, just tell us again, what's the book called?
Michelle: So the book is called The Wrong Order of Things and it was named because it is the wrong order of things for children to die before their parents. It was also after a discussion with a bereaved parent who talked through with me what we could call this book and I'm really grateful to Emily Tammam for her help with coming up with that title. So yes, The Wrong Order of Things. It's available from Amazon, from All Good Bookshops. You've got your e-books on... Kindle and so on. You've got audiobooks on Spotify and Audible and all the other kind of platforms. I've even had people buying it in Australia and Germany and America. I'm not quite sure how they've all managed to get it, and one in France told me she'd managed to get it. So I think people are being creative with the different platforms, but I'm just so thrilled people are reading it.
David Birchmore: Thank you so much for sharing. I will as I say I will put the link for people to get it below. I look forward to getting my coffee and read as well. Michelle, thank you so much for your time. It's such an inspiration to hear what you're doing, and I wish you all the greatest success with the book and the continuing care that you offer families until.
Michelle: Thank for having me, David.
David Birchmore: Absolute pleasure. Thank you.
David Birchmore: Yeah.
Michelle: I want it to be something we do chat about over the dinner table in a very normal way.
David Birchmore: Hello and welcome to Get a Shift On, a podcast all about career change and sharing amazing stories from people within healthcare. Today I'm absolutely delighted to welcome Dr. Michelle Hills, who is a paediatric palliative care consultant.
Michelle: thank you for having me David.
David Birchmore: just for everybody listening and or watching, can you just give a brief introduction as to who you are?
Michelle: Yes, so I've been a doctor for nearly 25 years now and I started off as a paediatrician and then realised I had a particular interest in palliative care and I've been working as a paediatric palliative care consultant and I work both in hospitals, hospices, well actually also in the community, wherever the children are and I also have had quite a role in medical education but the book is a new part of my career.
David Birchmore: where did it all start for you? When did you decide to become a doctor and what was that journey that you went on?
Michelle: knew I wanted to be a doctor when I was quite young actually and it was strange because I was so committed from that young age, know, choosing my GCSEs and my A levels so that I could do the course I wanted to do. But what was particularly interesting is I didn't go to university to be a pediatrician. I went to be a general practitioner and I have a huge amount of respect for GPs but I soon realised that actually that wasn't for me and I preferred having longer... with my patients and really getting to know them. And I just fell into paediatrics because I enjoyed working with children. Children just want to be children, they just want to play, they just want to feel better. And as I started doing more more paediatric jobs, again, I just realised that there was so much more we could do for children with really complex medical problems and a really uncertain future. And I just felt we weren't really... serving these families as well as we could and I just became really dedicated to helping those children and those families.
David Birchmore: You said to me off camera and in the information about yourself that you ended up speaking in Parliament and that's when there was something that triggered in you around palliative
Michelle: Thank
David Birchmore: care and looking out more for these families. What was that?
Michelle: Well, I gave a speech at the Houses of Parliament at one of the sort all-party parliamentary group evenings and I told a story. Now, I always make the stories confidential, so change a few details, but I told a story and it really connected with people. And I realised that if I want to educate people about what palliative care is and the challenges we have, I need to connect with everybody and to do that. I need to do storytelling, I need to tell narratives. If you just tell somebody about something, it feels distant, it doesn't feel relevant. Whereas when you suddenly give that child a name and a family and a situation, all of a sudden people realise, goodness, this could actually be something in my life or my friend's life or I know somebody where something like this has happened. I just suddenly thought, I need to share what I'm doing with the public. because I can only serve so many children and families that I see in my clinical practice. And I've already got into medical education to try to teach other professionals about palliative care. But really we need the whole society to understand what it is. We need society to talk more openly about death and dying. It's still a big taboo in this country. And I felt people didn't really understand the wonderful stuff that palliative care offers, all the support all the music therapy and play therapy and art therapy and things that are aside from what the medics are doing but really improving people's quality of life. It's about living and I wanted to get that across in a way people could understand. So yes that talk at the Houses of Parliament did sort of lead me to want to write a book and that's where the wrong order of things came from.
David Birchmore: Can you define palliative care for us, so we all know where and what we're actually talking about?
Michelle: Absolutely, I mean there are lots of different definitions of palliative care but the thing that comes across really strongly in all of them is it is a holistic supportive care. So it addresses the physical but also the psychological and emotional and spiritual aspects of care and it is for people who have a condition where they are likely to die early. So people with short lives and the thing that is so interesting about the definition is it really goes from the point of diagnosis, and actually sometimes that's just recognition of a disease because we don't always have a diagnosis, but it goes from that point of diagnosis all the way through to death and bereavement. So the end of life is a small part of it, but it is only one part. So I always like to think of it as this holistic care for people with shortened lives, but really throughout the whole of that illness and afterwards.
David Birchmore: When it comes to children and I presume adults as well, really to a point, but are you talking about the families and how they manage and work through the diagnosis themselves as well?
Michelle: Absolutely, I mean the child will always be at the centre of what I'm doing and actually for any parent they will want that because the child is the most important person in their world, but we absolutely help look after the whole family and often that involves just really good communication. So listening to people and understanding what are their worries, what are their fears and what are their goals? Because actually there are always so many different treatments we could offer. And some of them may be helpful, some of them may just be too difficult for that child to endure and parents need to have a voice. Parents need to be able to say what they do think their child can cope with and what they don't think their child would manage with. And I feel really, really strongly that everybody just has to have that open communication, that working together collaboratively with the child, the parents and all the different professionals involved. So you have that team. If I'm looking after a little boy called Daniel, I will say, Team Daniel, we are here together, one team, to try and work out what we need to do. And the parents, obviously, are key to that.
David Birchmore: Incredible. You mentioned fears and worries. What are the usually the biggest fears and worries, either of the child or of the parents?
Michelle: biggest fear for any parent is that they will lose their child. Nobody expects their child to die before themselves. People expect to bury their parents but not their children and that is a huge fear and I often hear people being reticent to have referrals to palliative care and I always try to sit back and listen. What do they understand by palliative care? Because usually when you get down to it what they're scared of is their child dying. If you explain to people, we're not going to take over the care, you'll still have your cardiologist or your oncologist or whichever other professionals are involved. We're just there to add this extra layer of support. We're here to try and manage those symptoms, try and make sure that she's not in pain, that he's not vomiting, that his seizures are better controlled. All of a sudden parents think, well, why would I turn down something which is an extra level of support and care? But it's that fear of loss. There's many other fears as well. And sadly, I sometimes hear families say to me they're worried what will happen to their child if they themselves die before their child does, because their child requires so much support and care and advocacy from their parents. And actually, fears can be so varied. That's why we have to ask, because
David Birchmore: Thanks.
Michelle: it's different for different people.
David Birchmore: Yeah. And hard to share that as well. I think like you said really getting down to what people really mean. And I think that comes back to the communication bit that you mentioned as well. What is it when they're saying no to something or pushing back against something that they're really saying and trying to communicate with you? It's obviously very difficult subject to talk about for lots of people. And you said that, you know, we have a strange relationship with death in this country. Do you think that is UK specific or do you think it is wider across the world? I know it depends on culture.
Michelle: you depend on culture. I mean I can't claim to be an expert on cultures all across the world because I've spent my whole career working in the United Kingdom. But I think many cultures struggle talking about death and dying and I think it's interesting even hearing you introduce this podcast because I recognize people will have experiences that make this difficult but rather than avoiding listening and avoiding talking I would encourage people to go gently, but to engage because people often have stories they can share and lived experiences that can help other people. And the way this book is written, it's not a textbook, it's not all sentimental, but it's not all melancholy either. It has a whole number of stories that in many ways are quite uplifting. I will look at a lot of beautiful lives. and funny things that happened and things that we did that truly made their lives better. And then I will also look at how can we make a death peaceful and how can we make that death occur wherever somebody wants it to be. And in the book, I talk about a child who died at a football match and actually what that meant to that family. I talk about so many different scenarios. I also talk about my own family and my own grief and bereavement and my own pets and my own children. The reason I've done that is because I want to make this human. I want to make it real. I want to make it so people don't feel uncomfortable. People just talk about these things normally. I don't want death and dying to be something that we only talk about when we're very ill, because that's when we're very stressed.
David Birchmore: Yeah.
Michelle: I want it to be something we do chat about over the dinner table in a very normal way. And it always blows my mind a little bit that people don't know. whether their loved ones would want a burial or a cremation or what they would want at their funeral or whatever. They just don't have these conversations. And if we can't have these conversations with very elderly people, how are we ever going to have them with younger ones?
David Birchmore: Agreed. I think it's such a emotive subject. I think we are my family, we're quite open. maybe with the background, you know, coming from oncology. My father was also a vicar. So from a very young age I knew that he was doing funerals. he also died very suddenly with a very short illness in two thousand and nine. but everything, just going to your point there, was planned out. He had an envelope on his desk with everything. And I know my mum has the same. And actually, my wife and I talked about it the other day and said, actually, we need to get housed together. Because then it's there. And we talked about with the kids. And actually, we talked about cremational burial with the children the other day. My eldest is 16, my youngest is 10. And my eldest said, I want to go to Tanzania. I want to have my ashes put under a tree in Tanzania where she spent a month last year. Yeah. Interesting.
Michelle: how beautiful.
David Birchmore: Really, really interesting to kind of touch on those subjects. You know, with teenagers that grump around. And spend far too long heads down on their phones. But when we open up about it, I think we you know a and there is probably a bit of a black humour for us in our family as well. I think again, coming from the background, you have to have a bit of a laugh and a joke. And I think the language that we use is important around that. And I think your book is so important because when you share those stories, you said you make it human. And I think that's absolutely the key to it.
Michelle: . .
David Birchmore: When you were writing the book and the stories you use in it, were they stories that you had already written down somewhere, or was it just something that you'd remembered and kind of thought back on?
Michelle: I have looked after thousands of children over my career. So when I wrote the book, I sort of pulled on experiences for many, children. And actually, even though the children's stories read as Bella's story, Noah's story, Hamad's story, they're not really one child's story. I've pulled out themes and I've combined children together to make a story that doesn't kind of damage any confidentiality or trust or any professionalism there. But I wanted to write stories that cover different aspects of children's palliative care. So I did sort of make sure that I included some things about knowing when to stop treatments or knowing how to manage symptoms or dealing with fears. care after death. And then I wrote the child's story so that I could bring out all those themes. The only bits of the book that are 100 % true are the bits about me. So I talk in there about sitting with my father when he was dying and talking my husband through what death looked like because he had never seen it before. I talk about conversations I have with my children. And it's interesting to hear what your children said because my daughter has this idea that when she does die, which I hope is not for a very long time, she wants people to do three roses and a thorn. And this is something I used to do at bedtime with my children. We'd go to bed and we'd say three lovely things about our day. And one thing that was frustrating or annoying or upset us. And it might just have been that a child didn't sit next to them at school or whatever. And she said, when I have my funeral, I want people to do that because people always tell you the lovely stuff. They never tell you what annoyed them. And she said, I want everyone to say three things they loved about me and one thing that drove them mad. And I just thought, how lovely.
David Birchmore: Yeah. And also I think from a parenting point of view as well, hearing that, you know, you probably did that at bedtime thinking and hoping that, you know, it might stick at some point. So to hear that back, I think it's one of those moments you go, they do listen.
Michelle: You know, there's so much of the book, The Wrong Order of Things, where I talk about comments my children have made and I realise I have heard myself back. And it's actually beautiful because it shows that they have listened to the importance of kind, honest, but open communication. I mean, I give a little scenario of a friend in my book who honestly thought his hamster had lived for his entire childhood. and he got to university and he didn't realize hamsters didn't live that long, but Fluffy had been replaced periodically by his parents. And he felt really silly. And I thought, again, if people aren't talking about these things with an animal, how are we talking about it with our loved ones?
David Birchmore: Yeah, I s I think the conversations again, you were talking just now about having those conversations and people saying how tough it must be, etcetera. My background is in radiotherapy, so obviously I treated a lot of people and a lot of people under palliative care who are very close to end of life. And actually people would say it must be really depressing, it must be really sad, those people must be really ill and actually, as you'll be well aware, so many people are actually s far from it. You know, they are Living as best they can given the circumstances. And actually, quite happy, Josh. And I remember one particular old lady, she was incredible. She was very close to end of life. And she was just the most lively, bubbly person, so positive, so happy about everything. and and at the same time, by distinction, there was a chap who's having prostate cancer treated. Fine. In all fairness, he was, you know, absolutely fine, very curable. and he was such a miserable bugger. it was such hard work. E and they would come in kind of all together for a few weeks and it was just really hard to kind of see. And it always reminds me that actually, yes, it's sad, yes it's hard for us that are left behind, but actually there is a lot of positivity around it. And I think that's the bit that is so important.
Michelle: I mean many of the children that I care for I look after for years and years and years and we have some children we transition to adult services or discharge from our services because they do well and that's the thing I need people to see you know when children come to hospices they can go in the hydrotherapy pool they can go in and watch a film at the cinema they can go in the sensory rooms they can do wonderful trips out they there's so much positivity But we also have to recognise that there is sadness too and families are having to deal with the biggest worry of their lives and every family is different and every individual within that family will be different. So when you talk about a gentleman who's grumpy and cantankerous and you talk about a lady who's full of life and energy, I need to respect all of those ways of living and actually we are all so individual and have our own emotions and our own behaviours. My role is simply to hear what it is that families need and try and help them through that. But yes, you are right that there are so many beautiful moments too. And we need to get those right, but we also need to get the end of life right too.
David Birchmore: Is there a time frame on palliative care? Are you calf touched on it there? But I think maybe that is a misconception that people have. You know, is there a set time where someone is into palliative care? Because if you're moving people to adult services, maybe people are misunderstanding that actually it's not imminent. You know, death is not imminent within palliative care, but there is a span to it.
Michelle: The difficulty is that different services run things differently and I think adult palliative care probably does have people closer to the end of their lives because there are just so many more adults who are dying. But I think in children's palliative care services, people will often accept children much, much, much earlier. And you're right, that misconception that it's just about the end probably is a barrier to referrals. But we try so hard, rather than dwelling on the myths, just trying to show the positives, showing what we can add in support so people can see it for themselves.
David Birchmore: I think with the book from what I'm understanding that really shines through. And that
Michelle: Well, it's been lovely actually. The book has only been out for a week and I have already had so many lovely reviews from professionals, from parents, from complete lay people who've had nothing to do with children's palliative care. And people really are having their assumptions challenged. And I love that. There was somebody who'd written a review saying, I bought this book to go on holiday and then thought, no, I won't take it on holiday. I've read it already and I haven't even gone to hold it yet. It was so good I couldn't put it down and people saying they thought you know they wouldn't be able to read it and they've absolutely loved it and read it in two nights. It is a book that will make you cry, have some tissues at the ready and there will be times when it also evokes things that are deep in your own emotions because of things that have happened in your life but it is also full of joy and that's what I want people to understand. Life is for living and this is a book that helps us all understand what's important to us, helps us recognise what we are scared of losing, but also helps us plan. I just urge people to pick it up really and give it a try. Every chapter is a different story, so you really can just dip in and read a short piece and you become quite invested in these children's lives. And the thing you have to remember is even if they are a composite of different children, all the things that have happened in this book have happened to real.
David Birchmore: Yeah.
Michelle: people.
David Birchmore: Yeah. I think that's so amazing. I look forward to reading it. and I'll say it now and I'll say it again later. There will be a link in the episode description and on all of my posts that link back to the book, so I hope that people will come and buy that for you. You mentioned crying. Have there been children that you have cried about?
Michelle: Yes, they have. And actually I talk in the book about early on in my career feeling very emotional and very tearful and how you do have to learn that there are some boundaries we have to maintain and we have professionalism to maintain and it's okay to show emotion but you can't be there with parents supporting you. You need to have that balance. But the reality is some of what I see is hard. And sometimes I would come home from work and my children would be asleep and I would stand at the door and I would just look at them and watch their chest going up and down and just realise how fortunate I was. You can't do this job without feeling some emotion. It is really, really tough at times. But my role is to make an awful time less awful. So even if things are really bad for a family, I've got to say, how can we make this a little bit better? And whilst I always say loss and grief is horrific, mean, living without someone you love is a gaping hole, it's awful. But the process of dying itself is something that can be incredibly peaceful and incredibly gentle. And if I can explain to people what it will look like. If I can manage symptoms so that a child is completely calm, if we can make sure we're doing it where they want to be, whether that's at home or in the hospice or in a hospital, I can help people have a bereavement that is a little bit less awful than it would have been otherwise.
David Birchmore: And you touched on earlier because you said you sat with your father while he was dying and explained it to your husband who'd never seen anyone die. I was with my dad when he died. And I think I I remember it obviously very clearly. the whole he was sick over five days. So it was a very quick process. the end was actually very peaceful. Yeah, I have seen people die before. Do you think getting that message out there that death is not always a horrendous, dreadful experience for children, for adults, for anyone, is really a big part of the story that you're sharing?
Michelle: It's one part of the story I'm sharing. It's not necessarily the biggest part because there are so many messages I wanted to get across. But I think the difficulty is people get their perception of death and dying from the TV. And in movies, it's always very dramatic and there's always some final statement that someone says and then, you know, it's all very poetic and very loud and, you know, the music changes. The reality is that's not the death that I see. So I just felt it was an important part of the book to talk about, but it was just one small part. I wanted to explain so many different things. Like a lot of people don't realize palliative care teams can become involved very early on, even if a baby's not yet born. So you may have an antenatal scan at 20 weeks and they may pick up a medical problem that's very severe. And people don't realise that hospices, palliative care teams can meet with you, discuss your options, look at what the birth might look like, look at what might happen after birth. You know, so many messages like that that people just don't know about. You know, I talk in the book about care after death. So sometimes when a child has sadly died, families actually want to spend a bit of time with their child to say goodbye calmly and peacefully without monitors, without tubes, without all the equipment. They just want to be able to sit there and hold their hand and tell them they love them. And I wanted to explain to people that that's possible. And people don't know that that's an option. So there were so many parts of the book that hopefully will be new to people and will make them think and will make them learn, but learn through storytelling, learn through just reading about these children's lives.
David Birchmore: You're so right there. I think what we see, what we perceive it to be like, is so different to the reality.
Michelle: one of the challenges is that in society we do often think death is failing and as a human we are always looking for something else that we could try and I don't blame families for this at all. Of course we want to make sure we do everything we can to help our loved ones. But there is always something you could try. There is always another drug, another operation, another different feed type, another regime, whatever. There is always something we can try. And one of the things I do talk about in the book is knowing when we have tried all the things that are sensible to try. And the difficulty is it's very hard to have a peaceful, dignified, natural death if we are still desperately looking at all the options available to us. because if we always dial 999, if we always go to hospital, we will always have a death which involves resuscitation and people being pushed away. And that's really hard because sometimes that's the right thing to do. But I wanted to challenge that thinking and make people realize that sometimes we do have to accept that we can't save someone. And now we need to focus on making sure that death is peaceful. And I actually tried to do quite a few videos about this on social media just to kind of explain the things to people because people just don't, people don't know. They will often say to me, I want you to do everything. And then they will also say to me, I want my son to die at home. And the difficulty is we can't actually do both. We can't do resuscitation and a blue light to an ambulance and also have someone dying at home. So we need to talk to people honestly. paint a realistic picture of all the options, work out what is sensible and what isn't. And people often think palliative care teams will come in and just talk about death and dying. And I will often be advocating for treatments. I will say, well, this child's got a great quality of life. And actually, when I see them at the hospice, they're having a wonderful time playing. I think this is correctable. I think we need to go to hospital. We need to get this little blip sorted. And I include stories about that in the book. I talk about little boy Fred and how his mother was scared to go to hospital because she thought people wouldn't treat him. But actually, even if he's dying, he might not be dying quite yet, there may be things we can correct. So yes, there's so many different aspects to palliative care that I wanted to get across.
David Birchmore: I think yeah, it I'm I'm so inspired just talking to you and again I look forward to reading the book and seeing these stories. And maybe we'll have to have a catch-up afterwards when I have read the book and I'm sure I have a whole load more questions for you. This isn't where I was going, but since you've said that, I'm interested and and my son asked me the other day around something about this. Is there a point where end of life and is there a fine balance between giving enough medication to keep someone comfortable but not enough to send them over that edge to death? And it came up with my son 'cause we're talking about euthanasia.
Michelle: That's a really, really good question because actually it's something a lot of parents are really worried about. Good palliative care involves giving medications to make sure somebody is comfortable. And actually, contrary to what people think, giving drugs like morphine doesn't actually hasten death. There are really good papers out there that if you give people really, really good symptom management, they actually live longer. And this is something people... don't realise, they think that doctors are going to come and give high doses of drugs and make somebody go to sleep and make somebody die. That is not legal in the UK. And I know there's been a lot of discussion about the assisted dying bill and so on. I'm not going to get into political conversations. I'm just going to explain what palliative care is. And that's about giving the medications you need to keep somebody comfortable. And yes, some of the medications may make people sleepy, but... Interestingly, when people are in pain, they often sleep a lot. When you manage that pain, sometimes they're more awake and they will actually talk to you and they will actually be more alert. So it's not as straightforward as perhaps your son thinks.
David Birchmore: It was a it was a very interesting conversation and it came up because of the Wrights died bill. That's he'd heard something, I don't know if they're talking about school or he'd just heard something he's he's very switched on and he asked some very deep questions, and I have to kind of put my hands up sometimes and say, I don't know. But it was that was interesting, and I kind of gave him a s a similar sort of answer because I'd asked a palliative care consultant years ago when I started my master's in palliative care. I was very interested. and we had that conversation. I was just interested to hear you say and I think it's important for people to hear that because again I think it is something that people worry about and don't necessarily know.
Michelle: The other thing your son may well be interested to know is that there is also this thing that we do in medicine all the time which is stopping a treatment. And we may do that if somebody has cancer and the chemotherapy is no longer helping, we may say we're not going to give this chemotherapy anymore. But we also withdraw treatments like ventilation. And this is 100 % legal in this country if a treatment is not helping someone. If we are doing something which is futile and someone is having pain and suffering as a result of what we're doing, we do not have to continue that treatment. So people can have their ventilator taken away, maybe even in a hospice or at home, it doesn't even have to be in a hospital. And they can be allowed a peaceful, natural death in that situation. And I don't think the public really understand that that is allowed, that is legal, that is done. And that is done with love and compassion and support, with discussion with the families, agreement with all the people who are around that young person. So even though we don't have assisted dying, we do have good quality palliative care and we do sometimes withhold or withdraw life-sustaining treatments when we don't feel. that it is going to be helpful. The first duty of a doctor is to do no harm. And I hold that dear. Yes, I would also like to do some good, but the first thing is to do no harm.
David Birchmore: So important to remember. So important I think. And again, I think that's sometimes the bit that people forget and don't see. Especially look, the current climate of the NHS is not a good one across the board, you know. And I think people forget that the reason that medicine is there and that do no harm bit I think can be very and my son is interested in it. his a hundred and three year old great granny died back in May.
Michelle: All the best.
David Birchmore: And he saw her just before she died. And I think that was actually very impactful for him. He's thirteen. but I think, you know, it was an important there have been lots of discussions around it. So I'm not surprised that it kind of it came up again when we were talking about it.
Michelle: But it actually shows what a lovely open communication your family has that you can have these conversations and I really really like and respect that and encourage more and more people just to talk openly with their children.
David Birchmore: Yeah. Yeah. Thank you. And I think we we actually so we're a blended family anyway, so we have, you know, lots of different kind of bits and pieces going on. So I've got two children, my wife has two. We spend a lot of time together. That was very deliberate. yeah, we sit around the dinner table and we have conversations about things because I think it's so important. don't get me wrong though, usually not so educated or highbrow or exciting. but every now and then it comes out. And I think for me that's the important bit, is that, you know, like you said about your daughter saying about the three roses and the thorn, you j at some point it starts to come through and you know that what you're saying or what you're talking about starts to make sense. And I think that's, you know, really important. And I will leave you a copy of your book somewhere for them to see 'cause they will pick stuff up when they want to. So that's interesting.
Michelle: Do know, I had a 12 year old girl who came to my book launch. Everybody else was an adult, but there was one 12 year old who came and her mum bought the book and she got in touch with me and she said, I haven't had a chance to read your book yet because my daughter hasn't let me because she's been reading it. And she said, I overheard her talking to her friends and she said, it's a brilliant book. It's about how children can die happy. And I just thought how lovely. that a child was reading these stories and absorbing it and talking openly. And that's what it's all about.
David Birchmore: In incredible. Incredible. And that's that's so powerful. I think that's I well, brilliant. Yeah. She will learn so much from it. And if she's having conversations with her friends as well, that, you know, multiplies. It's yeah. Incredible.
Michelle: even more special because I will be honest when I first wrote the book I felt passionate about it but literary agents and publishers were a little more hesitant they said who's
David Birchmore: Yeah.
Michelle: going to read a book about children's palliative care and I had all these responses which were beautiful about my writing you know they said how lovely my writing was and it was saying how important the topic was but they all said we don't think anybody will buy this book and ultimately we're a business we need to make sure it's a book that will sell. many, many of these rejections. And when I did get my wonderful agent, he said to me, you only need one yes. And he was absolutely right, because as soon as you have a publisher who believes in your book and champions your book and signs that book deal, you you're there, but you have to have very thick skins to kind of cope with the rejections. And I think having had the sort of career where I've gone through medicine and I've, you know, made all the sort of leaps and hurdles I had to do along the way, the kind of exams and the qualifications and the various jobs and you sort of move around the country and you get more experienced and that all just sort of flowed but when it came to writing a book, goodness me, it's a challenge. So yeah, tricky but I'm glad I persevered.
David Birchmore: Absolutely, absolutely. And I hope the the ones that said no, read your book with delight and slight annoyance that they were not the ones to take it forward. Were there moments when you were writing the book that you thought or when you were having those discussions, you know, you did you ever think to yourself, Golly, I've been a doctor, I've done all this hard training, I've done all of this. Why this is so much harder than being a doctor.
Michelle: I love words and I love writing. So for me, it was quite cathartic to kind of put these stories down on paper. It was hard having a lot of rejections and I'm someone with terrible imposter syndrome anyway, so I constantly feel that I'm not good enough. But my daughter just kept saying to me, this book's really good, mum, I think somebody will take it on. And she just kept encouraging me. And I kind of thought, well, if nobody ever reads it, at least I've enjoyed writing it. For me, the hardest bit is actually the social media side. I am not used to this world of TikTok and Instagram and I have recently started and I feel very self-conscious doing videos and posting various things, but it's a whole mystery to me. The algorithm, I know nothing about it and I don't understand how one video gets 20,000 views and one gets 500. I don't understand it, but I just feel if I'm going to teach the public... I need to make myself approachable and I think I just need to do it by being me. So we'll see where that goes, but that's probably the hardest bit.
David Birchmore: It's interesting, really, really interesting. And but you're a hundred percent right. I think the the writing the book, the that kind of cathartic feeling of doing it, I think is so important. And moving that over to the social media where actually you're gonna post these videos because you want to educate people is actually vital because it's you, it's your story, you're presenting it, and whether one person or a million people see it, it's for you and you're showing that story. And that's the bit that I think you have to concentrate on. is that people will see it and people will come to it when it's right for them.
Michelle: But I'm up against so many challenges. So I did a video about morphine and I got sent some alert from the social media company telling me I couldn't do things like this and they pulled out all my hashtags and I basically got sort of pushed down in the algorithm for all this. I thought, my goodness, I'm not here talking about taking drugs. I'm here talking about educating people. So it's been a challenge, but a fun one and I'm learning every step of the way.
David Birchmore: Yeah, well that's so interesting as well, because again you say that, you know, we said earlier that death is kind of a taboo subject, it's not spoken about, and then you get those kind of blockers on and I remember working in a hospital and I was trying to do some research on breast cancer, and the hospital system blocked the web browser because I typed the word breast.
Michelle: my goodness.
David Birchmore: And think it it's just a ridiculous state that that's where we end up. And I and I I worry about social media in terms of that because actually this is the place to learn. This is what people are looking at. You know, millions and millions of people are getting their education from TikTok, Instagram, YouTube. But if we can't have those open conversations, then there's real real problems around that.
Michelle: I must admit I was quite naive. I didn't realise that many, many people do use TikTok a bit like a search engine. But it was when I realised that I thought, well, OK, I need to go to where people want to learn. You know, there's no point talking if nobody is hearing what you're saying. So I will try my best and see how it goes.
David Birchmore: I'm sure and I'm I you are so easy to speak to, your passion is clear, and I feel as if I've learnt stuff from our conversation. So I have no doubt that that will come across in that social media, but then just maybe time and the more people that review your book, you know, people it will it will happen, and I have no doubt it will be
Michelle: Bye.
David Birchmore: success. And I think it's such an important subject. When you first got that copy of your book in your hand, how did that feel?
Michelle: goodness I was so emotional. In fact I did an unboxing video which my children told me I had to do for social media and
David Birchmore: I saw that.
Michelle: did you! I was so emotional. I tried to read the dedication and I just felt quite overwhelmed seeing it and holding it in my hand after all that work and yes it was was beautiful. I just hope that it gets into lots of other people's hands now but it's also an audiobook and actually I've had messages from people telling me they've been listening to me in the bath and listening to me in bed and listening to me on dog walks and in the car. And it's the strangest thing because I knew I'd recorded an audiobook. So logically, of course people were going to listen to it. But it's a very strange thought that
David Birchmore: Yes.
Michelle: people are listening to my voice for hours. But people have been so lovely. Somebody said to me that I was like David Attenborough. I said, really? I hate my own voice. She said, no, I could listen to you for hours. And I just thought, that's so lovely. because different people get their books in different ways. Some people want the e-book and it is an e-book, some people want a paper version to thumb through, and some people want audiobooks. So I've tried to take the book to people in whatever way they would like to listen to it. And what was lovely is I saw something on social media yesterday from the first deafblind doctor in the UK, and she was showing how she was listening to the book through some technology. And I just thought, brilliant, I want people to access it in what way they can access it.
David Birchmore: She's incredible.
Michelle: Yes.
David Birchmore: Yeah. I and you're right, and I think having that access, I think we're very fortunate to live in a world where you can access that type of material. However works for someone. And I think that's the beauty of the social media side. And the fact that we can have this conversation, the fact that lots of people will see the book, see the social media, wherever they are in the world, to learn and be educated around it. I just think it's so incredible. It's so different to you know, being
Michelle: Thank
David Birchmore: stuck in a library thumbing through pages of books, which I did when I did my degree. I think, you know, there are other ways, and it that was never the best way for me to learn. But at the time I knew no different and actually things were fairly limited. So here we are in this way. Is there gonna be a follow up book?
Michelle: my goodness, do you know everybody has asked me this question. They asked me at the book launch, I did a literary festival yesterday and people asked me there. I'm not going to say never, but right now I want to focus on the wrong order of things. I want to get that book out there. I want to get people reading it. I want to get people talking about it. I've had people ask me to write another anthology of stories. I've had people saying to me, could I write a book that was aimed actually at the children themselves? I am... thrilled people have enjoyed it and I'm thrilled people want me to write more but at the moment let's focus on book one, let's focus on the wrong order of things and then let's see where things lead.
David Birchmore: I did have to ask, I knew it'd be a p I knew it would be 'cause it's a bit like being asked when you're having children when you get married, isn't it? It's one of those things that I'm sure just comes up as a natural part of a conversation. What advice would you give to anyone who's looking to write a book?
Michelle: goodness. I've had quite a few people who've got in touch with me actually to ask about writing books. And I would say to anyone, you do need quite a lot of resilience. I would want people to have that passion. I want people to write. think writing is beautiful. I love words. I love the ability to get things down in a way that other people can connect. But you do have to accept that there are so many people trying to get books published. that you get so many no's. Some people ghost you completely, some people send you rejections that are beautiful but ultimately still a no. And it's really, really difficult. I completely understand why many people choose to self-publish because they can maintain that control. And that's absolutely fine. It wasn't something I wanted to pursue, but I think if you do have the time and energy to do all your own editing and, you know, cover design and marketing and so on. That's another way you can get your words out there. It's a challenge, but it's also a wonderful thing to share what's in your head with others.
David Birchmore: Amazing. And actually I think you touched on something there that's really important for people to understand who's you are still a full time doctor as well.
Michelle: time but almost full time so yes I do 80 % and I have continued doing 80 % throughout and I have no intention of stopping my clinical medicine. I love it, it is what I do, it's what I want to do but I realised that to help more people I had to educate more professionals and then I realised to help more people I had to teach the public so my job has grown rather than shifted.
David Birchmore: Amazing. I think that's fantastic. And I look, your passion, as I've said, and expertise shines through and I think it would be a real loss for you to not do it. So I'm so pleased here that you are going to continue. Just to finish up on, just tell us again, what's the book called?
Michelle: So the book is called The Wrong Order of Things and it was named because it is the wrong order of things for children to die before their parents. It was also after a discussion with a bereaved parent who talked through with me what we could call this book and I'm really grateful to Emily Tammam for her help with coming up with that title. So yes, The Wrong Order of Things. It's available from Amazon, from All Good Bookshops. You've got your e-books on... Kindle and so on. You've got audiobooks on Spotify and Audible and all the other kind of platforms. I've even had people buying it in Australia and Germany and America. I'm not quite sure how they've all managed to get it, and one in France told me she'd managed to get it. So I think people are being creative with the different platforms, but I'm just so thrilled people are reading it.
David Birchmore: Thank you so much for sharing. I will as I say I will put the link for people to get it below. I look forward to getting my coffee and read as well. Michelle, thank you so much for your time. It's such an inspiration to hear what you're doing, and I wish you all the greatest success with the book and the continuing care that you offer families until.
Michelle: Thank for having me, David.
David Birchmore: Absolute pleasure. Thank you.
