36. Death & Dignity | Love, Loss & the Conversations That Matter

In this episode of Mohivate, Dr Mohi Sarawgee explores one of the most important conversations we rarely have. Death, dying, and what it means to live well until the very end.

The episode begins with a simple observation. Despite being the one certainty every human being shares, death remains one of the least discussed subjects in modern life. Through personal stories, medical insight, and reflections from years in healthcare, she explores why so many families avoid these conversations and why having them may be one of the greatest gifts we leave the people we love.

Along the way, the episode unpacks what palliative care actually is and what it is not. From symptom management and quality of life to the pioneering work of Dame Cicely Saunders and the origin of the modern hospice movement. This episode is a conversation about dignity, compassion, and caring for the whole person.

The episode explores advance care planning, the evidence behind palliative care, and why conversations about our wishes matter long before they become urgent. You will discover how these discussions support families and help people make decisions that reflect what matters most to them.

Woven throughout are stories from clinical practice. Moments of humour, humanity, and wisdom that no textbook can teach. Because dying patients often leave behind some of life’s most important lessons for the living.

At its heart, this episode is not about death. It is about love, legacy, and the conversations that matter. The words we say while we still can. The things we leave behind. And the reminder that a life is not measured by how long it lasts, but by how deeply it touches others.

This episode is shared in fond remembrance of my uncle. 

29.03.1955 - 02.06 2025. Forever missed.

REFERENCES

1.WHO — Palliative Care as a Human Right, World Health Assembly Resolution 2014

https://www.who.int/news-room/fact-sheets/detail/palliative-care

2.Temel et al. 2010 — Early Palliative Care for Patients with Metastatic Non-Small-Cell Lung Cancer, New England Journal of Medicine

https://www.nejm.org/doi/abs/10.1056/NEJMoa1000678

3.Temel et al. 2024 — Stepped Palliative Care for Patients with Advanced Lung Cancer, JAMA

https://jamanetwork.com/journals/jama/fullarticle/2819643

4.Tsubaki et al. 2025 — Effects of Advance Care Planning on the Mental Health of Bereaved Families: A Systematic Review, Cureus

https://pmc.ncbi.nlm.nih.gov/articles/PMC12084671/

5.St Christopher’s Hospice — History of Dame Cicely Saunders

https://www.stchristophers.org.uk/about/history

6.Bronnie Ware — The Top Five Regrets of the Dying

https://bronnieware.com/regrets-of-the-dying/

7.Cicely Saunders and the concept of total pain — PMC

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11700540/

Just a gentle reminder: this episode is for information, education, and inspiration only. It’s not a substitute for your doctor’s advice. For any personal health concerns, always seek guidance from your doctor.

Transcript

SPEAKER_00 0:05

Hi everyone, welcome back to Mohivate. I'm Dr. Mohi Saraugi, a GP by profession, but here I'm swapping prescriptions for perspective. Before we begin today, a small note. This episode is a reflective conversation about death, dying, and palliative care. I'm going to try my best not to make it heavy. In fact, I truly hope it leaves you feeling something closer to the opposite. But if you're listening on a school run with very young children in the car, or if this topic feels particularly raw for you right now, you may wish to save it for a quieter moment, maybe with a cup of tea, during a walk, or in a space that is yours. Either way, I'm glad you're here. Think about this for a moment. The wellness industry will sell you every possible tool for living longer. Optimize your sleep, your gut, your longevity. And yet, there is one thing that unites every single person listening right now. One certainty that sits unchanged regardless of age, health, background, or how many supplements you take. We are all at some point going to die. And yet, this one certainty of human life still sits largely unspoken. A little like a relative nobody quite knows what to do with at the dinner table. Today, we are pulling up a chair for that relative. And I hope by the end of this, you're glad we did. In this episode, we talk about what palliative care actually is. We also talk about the conversation, the one most families never have, and what research and lived experience show happens to the people left behind. Wait for that one. You may find something in it that speaks to you. This episode is not about grief. We have a dedicated episode on Mohivate, episode 19, one of our most loved. It is there for you whenever you need it. This episode is about something else entirely. It is about living fully, honestly, with dignity, right until the very end. So let's begin. There is a word for the fear of death, thanatophobia. And while not everyone has a clinical phobia, most of us carry a low-grade cultural discomfort around the subject that shapes almost everything. How we talk to dying relatives, whether we make a will, whether we ever tell the people we love what we actually want at the end. We have medicalized death in a way that has paradoxically made it feel more frightening. A hundred years ago, before antibiotics, before intensive care units, most people died at home, surrounded by family, tended to by people who knew them. Death was visible, it was part of life. Now, most people in the developed world die in hospitals or care facilities, in the hands of strangers who are doing their absolute best. There is nothing wrong with that. But somewhere in that process, the conversation about what you actually wanted often gets lost. We outsource death, and in doing so, we outsource the conversation about it too. Because the systems we built were built to treat, not always to ask. Most of us arrive at this moment, our own or someone we love, completely unprepared. And that is simply because nobody ever showed us how to think about it. Things are changing slowly. COVID, in many ways, forced conversations that people had been avoiding for years. Many of you listening will already be ahead of this. You may have had these conversations, made these plans. If so, I hope today adds something to what you already know. For everyone else, I hope something today shifts, even a little. I say all of this as someone who many years ago was not always comfortable with this conversation either, but it changed. Let me tell you a story. In my fourth year of medical school, a friend and I decided we were too cool for standard blue scrubs. So we ordered black ones, had our names embroidered professionally, because if you're going to spend money you do not have as a medical student, you might as well come it. I should mention my friend and I had approximately a one-foot difference in height. We were not visually an identical pair. Our first shift in those scrubs was on a cardiology ward. We walked in together, very pleased with ourselves. A patient opened his eyes, looked at the two of us, standing there in matching black, and said, Oh God, has death arrived? We never wore those scrubs again. Mine became cleaning clothes. The embroidery remained. Somewhere in the cupboard, my name is still stitched onto a pair of black scrubs that one patient genuinely mistook for the arrival of the grim reaper. I recently told this story to my dentist who also wears black scrubs. Thanks to the NHS, the most wonderful system in the world, but after a dental appointment in the UK, the bank account does need resuscitation. And what I want you to know as we go further into this conversation is that even the people trained to be present for death are not always comfortable with it. Most of us would rather not think about it at all. We talk about our careers, our pensions, debate whether oat milk is superior to regular milk, and yet the conversation matters more than almost any other. For me, that understanding did not come from a textbook, it came from a rotation. I had always been drawn to palliative care, but I will be honest, for a long time death felt like something to be avoided in conversation, a taboo, which is still very much the case for many people today, and it was the same for me. Even in medicine, perhaps especially in medicine, where the culture is built around saving lives, not sitting with the end of them. During my GP training years, I specifically requested a rotation in palliative care, and I was lucky to be granted it. I walked into those six months covering both rehabilitation medicine and palliative care, thinking it was about managing the end. I walked out understanding something else entirely. It changed everything I had until then learned about medicine, about death, and honestly, about life. So, what is palliative care actually? Let me ask you something. When you hear those two words, palliative care, what do you feel? For most people, the honest answer is something like dread, the sense that palliative care means the doctors have given up. I want to dismantle that completely because it is absolutely wrong. Palliative care is not the waiting room for death. It is a medical specialty dedicated to improving the quality of life for people with serious illness and for their families. Cancer, heart failure, motor neuron disease, ALS, dementia. It can begin at diagnosis, even when active treatment is ongoing and years of life remain. The World Health Organization declared palliative care to be a human right in 2014. A human right, not a last resort. In practice, palliative care manages pain, nausea, vomiting, breathlessness, and anxiety. It addresses food, appetite. It provides counseling and emotional support. It helps patients and families understand what is coming, not to frighten them, but to prepare them. And it supports the family alongside the patient as an equal part of the care. The WHO captures it in three words physical, psychosocial, and spiritual. Three words that most medical specialties barely have time for individually. Palliative care holds all three simultaneously. And here is the finding that stopped the medical world. A landmark study published in the New England Journal of Medicine in 2010 by Temil and colleagues took patients with advanced lung cancer and divided them into two groups. One received standard oncology care, the other received early palliative care alongside their treatment. The palliative care group had better quality of life, less depression, and they lived longer. Palliative care, introduced early, made the time that remained more fully lived. And 15 years later, in 2024, the same researcher published a follow-up trial in the Journal of the American Medical Association, confirming and expanding exactly that finding. This is not old science. This is current, replicated, robust evidence. Because when suffering is addressed, when pain is managed, when fear is hurt, when someone finally asks you what you want, the body responds, the mind responds. Palliative care is in many ways the most ambitious thing medicine does. And to understand where all of this came from, let me tell you one of the most beautiful stories in the history of medicine. Hospice is a word that carries enormous weight, and unlike palliative care, it carries it mostly in the wrong direction. The word comes from the Latin hospitium, meaning hospitality, shelter, a place of welcome for travelers. The original hospices were places of rest for pilgrims on long journeys. There's something in that etymology that I think we have lost. Modern hospice care was pioneered by one woman, Dame Cicely Saunders, born 1918, died 2005, a British nurse, social worker, and eventually physician, the single most important figure in the history of end-of-life medicine. Her story begins with a dying man. In 1947, while she was working as a social worker in a London hospital, she met a Polish Jewish refugee named David Tarzma. He was 40 years old and dying of cancer. They talked. He was alone. He had no family in England. And in those conversations about death and meaning and what he needed in his final weeks, he said something to her that she carried for the rest of her life. He said, I only want what is in your mind and in your heart. Not more treatment, not another procedure. What is in your mind, your knowledge, and what is in your heart, your presence. When he died, he left her a small sum of money and he said, I'll be a window in your home. That window was built literally into St. Christopher's Hospice in London, which Cicely Saunders founded in 1967. The world's first modern hospice, a place where dying people could receive more than medical care, dignity, compassion, and company. She also said something that I think about often. You matter because you are you, and you matter to the last moment of your life. Hospice is not a place you go to die. It is a place or increasingly a service that comes to your home where you're supported to live as fully as possible. Your symptoms managed, your wishes respected, your family cared for alongside you. Hospice is where hope changes shape. It is often where the most meaningful living happens at a time when it matters most. And the concept that made all of this possible, the concept Dame Cicely Saunders built it around was something she called total pain. The pain of dying, she argued, was multidimensional. Physical, yes, but also emotional, social, spiritual, existential, the pain of unfinished relationships, of fear, of feeling like a burden, the pain of not knowing what is happening to your body, the pain of wondering what comes next. Before Cicely Saunders, medicine treated only the body. She said, you have to treat the whole person. And if you do not address all the dimensions of suffering, you have not addressed suffering at all. That concept, radical, when she proposed it in the 1960s, is now the foundation of palliative care worldwide. Over 8,000 palliative care programs exist globally, and it all began with a dying man in a London hospital. And the words, I only want what is in your mind and in your heart. Here is a question for you. If you were seriously ill, if you were in an intensive care unit, unable to speak for yourself, would the people around you know what you wanted? Would they know whether you wanted aggressive intervention or comfort-focused care? Would they know your feelings about resuscitation, about where you would want to be, home, hospice, or hospital? Most people have never had this conversation, and it feels somehow like having it might make it more likely to happen. As if talking about death is an invitation. It isn't, and the cost of not having it is borne directly by the people who love you most, those who are left behind, asked to make impossible decisions under unbearable pressure without a compass. Advanced care planning is the compass. It does not have to be a legal document, though formalizing it is always better. In the UK, options include an advanced decision to refuse treatment, a respect form, or a living will. In the US, a POLST form. In other jurisdictions, similar documents exist. These have legal weight, they matter. But this planning can also begin as a conversation at the kitchen table, on a walk, in a quiet moment with someone you trust. Ask yourself, what do I value most? What would make life not worth living for me? What are my fears about dying? What do I want the people I love to know? These are not morbid questions. They are the most loving questions you can ask yourself and answer for others. A 2024 systematic review found that families who had advanced care planning conversations reported significantly lower anxiety, lower depression, and lower rates of complicated grief. The conversation is not just for the person who is dying. It is a profound and lasting gift to the people left behind. And yet, in UK general practice, data shows that 97% of patients with metastatic cancer had some form of advanced care planning conversation. But only 17% of people with dementia, a condition that almost always ends in death, and only 9% of people aged over 90 had any such conversation documented. Two-thirds of adults in the US have no advanced directive at all. This is where something called the mortality surprise question becomes important. It is a clinical tool used in GP surgeries and emergency departments. A doctor asks themselves, would I be surprised if this patient died in the next six months? If the answer is no, that is the signal. That is when the conversations need to start not at the very end. Now, while there's still time. Because medicine focuses on curing, palliative care focuses on caring. And the conversation we just talked about, the one most families never have, is where the two things finally meet. Tell someone this year one thing you would want if you were very unwell, just one. That is the beginning. I want to pause here for a moment. I had originally planned to talk about the science of dying in this episode, what the body does, and some of the most extraordinary things that happen at the very end of life that medicine is only beginning to understand. And I will, but not today. That deserves its own episode. And I promise you, when we get there, it will change how you think about dying entirely. Today, I want to stay in the conversation because that is what this episode is. Palliative care has a way of changing you, slowly, permanently. I had a senior GP colleague who kept a spiral notebook for decades. Every patient he lost, their name written down. Year after year, he told me, it reminded him, that behind every clinical decision was a person, and that person deserved to be remembered. I could never manage that audit. For me, it has always been stories, and today I want to share two of them with you. The first is about a patient I would visit regularly at home. She had a beautiful house, the kind where at the front, you had a garden with a view, tulips, rose bushes, and I would often compliment her and tell her that I wished I had a home like hers. I was looking for a house myself at the time. Still am, if anyone is asking. Towards the end, she mentioned this to her daughter. And one day when I visited and the daughter was there, she said, Mom told me you really love the house. And then my patient said something that stopped me completely. She said, I'm leaving this home to my daughter. She will probably sell it, and I would love for you to consider buying it when that happens. I told her the house was far too big for me, and that to afford it, I would need to work in a different country, not the UK. We laughed about it. And the next time I came, she said, perhaps one day when you have a family, you will need the bigger house. And I can tell my daughter to negotiate the price for you. I would have loved for someone I know to have this home. I cannot tell you how much that moment still stays with me. And in all honesty, I still drive past that house sometimes, and I still wonder who lives there. The second story is about a man I was caring for towards the end of his life. His son was devoted, visiting every day, doing everything. And I mentioned to my patient one day, your son really looks after you well. He looked at me and said, That is only because he wants my car. In a warm, laughing kind of conversation, I told him I was sure that was not the case. He said, The day I tell him the car is his, he will stop coming. So I said, why not tell him and see what happens? He gave me a look, said nothing, and I left it there. He passed away peacefully. And when his son came to collect the death certificate, he told me, my dad handed me the keys to his car the evening after he had a conversation with you. He told me all about it. I thought you should know. I think about that man often, about what it took for him to hand over those keys and what his son must have felt receiving them. Sometimes watching people die becomes a companion and it can get overwhelming, but in the end, helping them through the process is strangely not burdening. These are the moments palliative care gives you. Moments no textbook prepares you for, and that you carry quietly, gratefully for the rest of your career. Dying patients teach you what matters to people, and it is almost never what you expect. I never had a patient tell me they wish they had spent more time answering emails or attending that last meeting. Dying people rarely talk about the things healthy people spend most of their lives worrying about promotions, possessions, status. Instead, conversations, return to people, family, friendships, love, forgiveness, moments, stories, the people who shape them. Things that cannot be measured. There is a palliative care nurse in Australia named Bronny Ware who spent years working with people in the final weeks of their lives and wrote about what they told her. The book is called The Top Five Regrets of the Dying, and the most common regrets were not what you might expect. The most common was this: I wish I had the courage to live a life true to myself rather than the life others expected of me. Followed by, I wish I had not worked so hard. And I want to pause on that one because I'm not saying hard work does not matter. It does. But perhaps the question is, what are we working so hard for and whether the people we love feel it too? Then I wish I had the courage to express my feelings. I wish I had stayed in touch with my friends. I wish I had let myself be happier. That last one stops me every time. Not I wish I had been happier, but let myself be happier. As if happiness was always available and something in us kept declining the invitation. What strikes me about this list, and it may sound familiar, but we all need a reminder, is how achievable most of it is right now, today. Not one item on that list requires money, health, youth, or luck. Every single one is available to most people listening to this episode at this very moment. Dying patients also teach you about the rescue fantasy, the belief that medicine's job is always to fight, always to cure, always to extend. That belief can sometimes cause the very suffering it is trying to prevent. Aggressive treatment in the last weeks of life, when it is not wanted, and when it cannot change the outcome, does not prolong living. It prolongs dying. And there is a profound difference between those two things. The dying, it turns out, have a great deal to teach the living if we are willing to listen. And then there are the deaths that give no warning, the sudden ones, the ones that do not arrive in a palliative care ward with weeks of preparation, the accident, the cardiac arrest, the brain hemorrhage, the phone call that comes without announcement, the death that does not knock. And there are times, as we saw during COVID, and in other circumstances beyond our control, when the last touch, the last word, the last sitting beside is taken away, not by choice, but by circumstance. The grief of those deaths carries something extra. The loss of the goodbye. The loss of the chance to say what needed saying. The loss of the hand held at the end. I want to say something to anyone carrying that grief right now. And I say this with lived experience. The absence of a formal goodbye does not mean the love was not communicated. It does not mean the person did not know. Love in a life well shared is not located in a final conversation. It is in every ordinary moment before it. The cup of tea made without being asked. The phone call on a Tuesday for no reason. The argument resolved. The Saturday morning. The photograph taken without knowing it would be the last. Sometimes the most important conversations about dying are never spoken out loud. They are lived in the affairs, quietly settled, in the love, shown consistently, in a life that said everything it needed to say long before the ending came. The absence of a final conversation does not mean the love was incomplete. It was complete, it was there in everything. And for those of you listening who are already on the other side of this, who have lost someone recently or long ago, I want to say something directly to you. Grief is love with nowhere to go. And the fact that it hurts, the fact that it keeps arriving sometimes years later, in a song, in a food they loved, in a conversation, is not a sign that something is wrong with you. It is a sign of how much you loved. Learn to carry that grief lightly enough that you can still move, still breathe, still find moments of genuine joy. And know that joy, when it comes, is not a betrayal of the person you lost. It is, in many ways, a continuation of them. Because the people we love do not live in our sadness. They live in everything they gave us. The way we laugh, the things we value, the lessons we learned, the choices we made because of them. They are not gone. They are woven in. So here we are. In this episode, I tried to give a small introduction to palliative care, and there is more coming. We talked about the conversation, the one most families never have. And if you did not have that conversation, please do not carry the grief of that. Because as I said earlier, it was already there in the moments lived, in the love shown. What I want you to take from today is simple. Death is not the enemy of a good life. The refusal to acknowledge it is have the conversation before you need to, when life feels ordinary and there is no urgency, at the kitchen table, on a walk, in any of the unheroic moments that make up a life. Many of us would rather assemble flat pack furniture without instructions than discuss what we would want at the end of our lives. Write it down if you want. Tell someone who matters. Because that conversation about what you want, about what matters, about who you trust is an act of love for yourself and for everyone who loves you. Life and death are not problems to be optimized, they are both gifts to be lived. A sunset is no less beautiful because it ends. This episode is in fond remembrance of my maternal uncle on his first anniversary. An exceptional human being, a urologist and robotic surgeon much ahead of his time, who leaves behind a legacy of teaching, a laparoscopic simulator that will train surgeons long after him. Admired, respected, deeply loved, and someone who taught me what giving was all about. A life so well lived. I quietly watched him and he shaped my life in more ways than I can say. There are times when people leave behind something you wish you had one more moment to express gratitude for. Sometimes the unwritten words never find their way out. This episode is for him and for my aunt with love and with gratitude. I hope something today stirred a thought gave you something to hold on to or simply made you feel a little less alone in this. Thank you for listening. I'm Dr. Mohi. Until next time, remember this the people we love do not leave us. They change shape, they become the way we see the world. And learning to find them there in the ordinary, in the unexpected, in the photograph taken without knowing is perhaps the most tender way of all of coming home to yourself.