The Power of Nursing Through Storytelling

Marie Cooper, Kerene Payne, Eva Paoletti, Sachin Dwivedi and Andrew Adeck 

There is a kind of care that no textbook fully captures. It lives in quiet hospital rooms, in whispered confessions, in hands held through the longest nights.

On International Nurses Day, the Global Palliative Nursing Network (GPNN) brought four nurses to the stage at the Nursing Now Challenge Global Event, and each one told a story that stayed in the room long after they finished speaking.

Storytellers, Story Gatherers, Story Keepers

As a nurse, Kerene is the backbone of South Africa’s community PC team. She spoke first, and she gave the room a framework that felt like something they had always known but never quite named. Palliative nurses, she said, move through three roles and each one matters.

A photograph of Kerene Payne. Kerene has her blonde hair tied back and is smiling for a professional photo - looking directly into the camera and wearing a patterned blouse.

As storytellers, we sit with patients and draw out the words they are afraid to say, their dreams, their fears, their regrets, and we carry those words forward to advocate for them when they can no longer advocate for themselves. As story gatherers, we go deeper still, learning not just the patient’s condition but their whole life: the adventures, the loves, the losses, the memories they want to leave behind. And as story keepers, we become the guardians of the things said only once, in a low voice, in a room where the door is closed. The last wishes. The long-held guilt. The quiet plea for forgiveness. Patients share these things because they know, in the space a nurse creates, they will never be judged. They will only ever be met with love.

Eva has long dark hair covering her shoulders and is wearing a white top and yellow cardigan. Eva is stting on a sofa, smiling widely as she looks into the camera.

The Secret Everyone Already Knew

Eva travelled around the world to write her book, joined us from the UK, and she has come to recognise a particular kind of silence, the silence of a family that has, without words, agreed to pretend. The patient does not mention dying. The family does not acknowledge the truth. Everyone believes they are protecting each other, and everyone grieves quietly and alone.

She remembered the afternoon a man in his fifties, lying in a hospice bed with his wife beside him, simply looked up and asked: “Am I dying?” Eva was trained for this question. But before she could speak, his wife answered. Calmly. Honestly. With so much love, the room filled. Yes, she said. And I will be right here until the end. He wept. He thanked her. And the suffering that had lived between them, unspoken for so long, finally became something they could carry together. Eva left that room knowing she had witnessed something rare and healing: the truth, spoken tenderly, arriving just in time.

When Silence Becomes the Care

Andrew, a nurse working in conflict-affected South Sudan for more than 20 years, told a story where the most important thing he did was nothing at all. He was caring for a young woman with stage IV HIV/AIDS whose family’s relentless hope had left her no room to be afraid. She had fears that she could not speak. Grief with nowhere to go.

Andrew looks directly into the camera as he wears a white top. He has a relaxed expression on his face.

So Andrew sat beside her, took her hand, and did not fill the silence. He simply stayed. After a long while, she began to talk, really talk about the sadness and fear she had carried alone. When she finished, she looked at him and said quietly, “I feel lighter now.” Andrew carried those words home. They remind him, they remind all of us, that presence is its own form of medicine, and sometimes the most healing thing we can offer is simply to stay.

Sachin is posing for a professional photo. He wears a smart suit and tie as he looks directly into the camera with a calm smile.

Please Take Me Home

Sachin, a palliative care nurse educator from India, spoke of a woman of forty-two battling Acute Myeloid Leukaemia, who arrived for a bone marrow transplant after a year of fighting. On the day they met, she gazed toward the River Ganga and said softly, “If I die, please put my ashes in Maa Ganga.” It was said with faith, not despair. The day before her transplant, she whispered, “I will die soon. Please take me home.” He had no answer, only the weight of her words.

The transplant offered hope briefly, then sepsis took it away. Her family chose to honour her wish. A twenty-hour ambulance journey brought her home. When she arrived, fear gave way to relief, peace, recognition. She told her husband, “Today I will die.” Prayers, Family gathered. And she left this world gently, at home, her soul beside the sacred river she had always believed in.

When the nurses finished speaking, the room held its breath. Sana Gul, a postgraduate Fellow at the University of Birmingham, UK, reflected that listening itself had been the greatest lesson, a powerful tool for understanding how grief is carried and shared. Flora Dangwa, a PhD Fellow at Cicely Saunders Institute, called it simply “very, very powerful.”

About the GPNN

The GPNN unites nurses worldwide to strengthen compassionate palliative care through collaboration and shared experience. It empowers champions to lead, support peers, and improve care for patients and families everywhere.

To join this growing community, visit https://www.stchristophers.org.uk/gpnn/ 

Mental Capacity in Palliative Care Conference

“In palliative care, questions about mental capacity are rarely straightforward as there are so many factors involved. Professionals attempting to do the right things are confronted by complex and ethically demanding decision.”

These were some of the introductory comments made by Michele King, Social Work and Safeguarding Lead at St Christopher’s as she opened the Mental Capacity in Palliative Care Conference.

The 20-year-old Act is one of the most important frameworks for guiding practice and the conference provided an opportunity to reflect on its principles and complex realties of putting it into practice in palliative care, Michell added.

“How is it being lived in real life decisions?” she asked rhetorically. Given that two thirds of people who die experience some kind of cognitive impairment in their final stages means the Act cannot be regarded as an abstract legal framework.

This was echoed by Dr Emma Hall, Palliative Care Consultant, St Christopher’s, who said the stakes are especially high when it comes to assessing capacity in someone with advanced illness, as time is short and the onus is on aligning with the individual’s goals while considering the impact on their family.

Barrister, writer and educator, Alex Ruck Keene provided the more than 200 delegates with some of the key takeaways of the day during his two speaking slots.

Alex reminded health and social care professionals that the Act, Section 5 specifically, provides a defence to assaulting a patient, if they’ve consented or the professional believes for good clinical reasons that they’ve acted in their best interests.

He also stressed the importance of asking why you’re assessing someone’s capacity and the context in which you’re doing it, because someone doesn’t lack capacity per se, only to make a specific decision.

“If someone has capacity, it is on them. If they don’t, it’s on us,” was his blunt advice. When writing a report, professionals should remember the law doesn’t expect perfection, just evidence of proper reasoning, Alex added.

Alex also pleaded with delegates to ask for more time to make an assessment if they ever felt like they were being rushed and he advised metaphorically placing yourself in the patient’s shoes so that you’re confident you’re making a best interests decision for that specific patient.

Establishing if someone is aware of their own deficits is one of the best ways to assess if they have executive capacity. This important point was well illustrated with a case study provided by Dr Matt Butler, Specialist Registrar in Psychiatry, South London and Maudsley,in which a woman with HIV who engaged with professionals and apparently accepted advice, but on further assessment was found, in practice, not to understand or even remember about her condition.

Emma Hall emphasised that completing an assessment effectively and compassionately takes time, especially if reasonable adjustments are required. Her co-speaker, Matt Butler, recommended a multi-disciplinary approach with input from doctors, social workers and welfare rights professionals.

The importance of collaborative communication with colleagues is matched by the need to recognise that impaired communication skills in a patient don’t equate to a lack of capacity.

Isla Jones, Speech and Language Therapist at St Christopher’s, said: “If you assume incapacity because of lack of communication you may work less hard and take less time because you’ve almost reached conclusion. Challenge yourself.”

Co-speaker Dr Mark Jayes, Speech and Language Therapist and Research Fellow, Manchester Metropolitan University, added practical advice: “You need to consider how to provide support to enable people to communicate to their full potential and have to think about the environment in which you’re conducting an assessment too. We may not be able to change their communication abilities, but we can change the environment and enskill ourselves to be better communication partners.”

One size doesn’t fit all, he added, stressing the need for tailored solutions based on an understanding of the ways in which the individual best understands information and expresses their choices.

Mark and Isla implored delegates to reach out to speech and language therapists for support in effective communication.

Addressing that need for help was one of the central elements of the presentation by Dr Sharmeen Hasan, Consultant Geriatrician, Kings College Hospital. She recounted examples of joint decision-making with numerous clinical colleagues from both palliative and intensive care as well as lawyers. And when the assessments and the aftermath have been traumatic, proper debriefs are invaluable, Sharmeen said.

“Understand the space where people are and remember that multi-agency working helps with complexity,” she added. Later, in the final Q&A session of the day, she complemented this point recommending professional colleagues use plain, nonclinical language to aid communication.

Reducing complexity and with it the accompanying stress was the focus of the presentation by Zoe Burridge, Adult Safeguarding Lead at Bromley Healthcare. Zoe addressed one of the most common forms of adult abuse as identified in Safeguarding Adult Reviews (SARs) – self neglect. Lack of confidence means professionals often don’t look at important factors like previous trauma, the impact of substance misuse and executive capacity when assessing people who experience self-neglect.

Yes, Zoe said, this cohort has the right make unwise decisions, but the professionals need to be satisfied that the individual is fully aware but consciously disregarding or giving less weight to certain facts relevant to the decision. In practical terms, when that individual says they can and will clear up their house, what if they don’t day after day?

Zoe encouraged delegates to embrace their curiosity. “If things don’t add up ask more questions and document what you see or what is said. Give evidence and record the assessment clearly and consistently.”

In Bromley, Zoe said, they’ve adopted a complex case pathway to ensure the proper management of risks posed by self-neglect.

Delegates watched as Michele King, with two members of her social work team and an actor, perform a very lifelike role play of a mental capacity and best interests assessment. This was complemented by numerous case studies shared by speakers throughout the day. In her second session, Emma Hall used these to illustrate the comparative benefits of Lasting Power of Attorney, Advance Statements and Advance Decisions to Refuse Treatment. Emma advised delegates to encourage people to have an LPA and an ADRT, ensure that they don’t conflict, add them EPACCS and ensure they are registered with the Office of the Public Guardian.

Runs a project providing free legal advice for people aged 18-30 with terminal diagnosis at Royal Surrey Hospital.

“I want to improve my knowledge so I can answer my clients’ questions. I know St Christopher’s well. I came to the Total Pain conference last year.

Karita Razzell, St Mungo’s Palliative Care Manager, said: “I work to support people experiencing homelessness to access palliative care and deliver training of palliative care. I love the Mental Capacity Act, it is fascinating. And there are a lot of capacity issues in the client group I work with – people with substance misuse issues, mental health issues, and lots of trauma and lots of young people with overlapping safeguarding issues. I’m trying to develop a training course on the Mental Capacity Act for homelessness so this is really useful. It’s been very interesting listening to people talking about executive capacity. It’s been encouraging to hear speakers toughing on professional curiosity too. It’s really nice that they’ve taken a realistic approach, looking at the barriers that there are to conducting capacity assessments. It’s all been really interesting and great to hear such a broad spectrum of opinions, expertise and perspectives.

Paul Lawrence, Head of Safeguarding, Shooting Star Children’s Hospice: “I’m new to world of palliative care and this falls under my remit. I’ve been looking for useful mental capacity training and webinars I also wanted to hear Alex Ruck Keene who was speaking. It’s been really engaging and translatable to a children’s hospice setting. I particularly enjoyed the session with the speech and language therapists. It felt really practical and useful, especially thinking about some recent cases we’ve had. That’s given me some practical approaches to how I might do things differently in future.”

My awareness and response to End of Life

St Christopher's C Icon White

Working at St Christopher’s CARE, I support our training at an admin level (I am not clinical). Right now I couldn’t feel more grateful for this role and how it has helped me better cope with these last years. CARE stands for Centre for Awareness and Response to End of Life – it has been helpful to me to write about my response to my Mum’s end of life and I want to raise awareness about dementia journeys.


My wonderful mother died last week aged 76. She’d lived 4 years in a nursing home with Alzheimer’s disease.

Her dementia was very obvious from 7 years ago, she would have been 69 then. She started to get lost going to familiar places and seemed to be ageing fast – suddenly she was someone you felt you needed to grab the arm of to check they got to their seat OK. This wasn’t my Mum. My Mum would be the first to rush over when you entered a room, there with a big smile – a talented networker who so many people have recently told us ‘lit up a room’.

So much memory went so fast – Mum wasn’t living in the past like others might – in recent years she was living in the moment. Her verbal skills got very limited. For a while she could sing along a little to songs, but in the last year hardly any communication. I found it hard not knowing what she was thinking. However, joyfully we could still get a smile and a chuckle.

This last week since her death I have been reflecting on this journey and choices we have had to make along the way.

A woman, smiling next to another woman in bed

We needed help

The day we took Mum to the care home was the hardest day ever – when she could still talk to us but didn’t really know what was going on. We did this because Dad was really struggling and we didn’t want any more episodes of her wandering off, falling down, or facing the indignity of being in a mess or half dressed in the wrong situation. She needed supervision throughout the day and was in a large house. Hazards were everywhere.

Once this hard decision was in motion the momentousness of it hit. The freedom gone of what you can do together, the closeness you can have. I couldn’t just lie next to Mum on a bed for a relax. Instead you are sitting in a residents’ lounge or a functional bedroom on a strange chair. She lost the ability to walk within a year so she was hoisted into a wheelchair every day. I missed the random wanderings. Visits were limited due to Covid. Did the move into care fast-track everything? How will we ever know? We chose the best home we could.

A view of a rounded driveway with a large tree in the middle.
A photo of the care home’s beautiful entrance.

When we sold the family house, we moved Mum to another nursing home nearer to my sister and Dad moved house too. This was a wonderful home and they took pleasure in knowing about who Mum was before the dementia, but in reality they were now seeing such a smaller version of the dynamic woman she once was. They still loved her of course as her warmth and smile broke through everything.

We visited often. A couple of times we did have to convince Dad that bringing her home again was not advisable when he worried he’d done the wrong thing – surely, we told him, we’ll just have all the same problems again and now worse with the lack of mobility.

In terms of decision-making – it’s been these last months when we’ve had to make a lot more, ones I hadn’t even anticipated.

A journal into the unknown

Mum has suddenly started having pain, she is regularly groaning and leaning forward. The doctor has visited – surely she needs to go to hospital for tests and scans? He advised us kindly that invasive testing isn’t in Mum’s best interest. If we find out something that inevitably might need an operation, what will we do? No-one will advise (or even allow) someone with advanced dementia to go through surgery. The distress to them for the quality of life they currently have, just isn’t justifiable. But equally it’s a whole new way to think.

We are used to identifying an illness and treating it, but now for Mum, we are just going to manage it. We are going to use morphine (via a patch and oral) – and you can use morphine for as long as it is needed which I didn’t know. The side effects are also managed and not a concern. I’m not sure this is a decision with options, I don’t argue with the doctor. I don’t push for the scans. We just decide the doctor is right.
I cannot pretend that I am not relieved, that with this unknown ‘thing’, Mum might have an exit from the further long decline ahead of her – I feel awful for even thinking this but I am being honest, thinking of what Mum would be wishing for herself.

So now a painful journey of pain management. The absolute essential thing we need to do for Mum. Trying to get it just right so the breakthrough pain isn’t too bad for too long. There is nothing worse than listening to Mum groaning for more than an hour, hoping the pain relief will kick in, knocking on the nurse’s door to ask if we can have more please. Calling the doctors or the local hospice team to up the prescription. There’s morphine but also a sedative that can help so they are doing both. It seems to depend on the day and time if you have a peaceful visit with Mum or a groaning one when you sometimes just feel powerless to help. We just want more drugs for her – instantly. Everyone is trying very hard to manage it, it’s just a complicated job. It’s clear to me why we hold a conference at St Christopher’s CARE called The Sharp End of Pain Control.

We are at the point where everyone is OK to talk about the fact that Mum is now at the end of life. It feels like the home are pleased that we said it first. We can now talk more openly about the weeks ahead.
From working at St Christopher’s CARE I feel more prepared – this is all the training that I support, in a real-life scenario, and I’m comforted too, knowing I have some of the best palliative nurses at my fingertips if I need advice.

Mum’s sleeping a lot of the time, no longer being taken to the lounge in the wheelchair, and she has mostly stopped eating and drinking. We agree that we are not going to try to keep putting food and drink into her as she’s obviously not interested and swallowing has become problematic.
Nearing the end stage of Mum’s life, all I can hope for is a little chuckle. And I get it on one visit and I treasure it.

We still think we have weeks to go but fortunately a nurse colleague at work, on hearing from me the status of things, says to me we are unlikely looking at weeks but more like days. This certainly shocks me but is so helpful – I share this with the family, shock them too, but it spurs us all into re-prioritising our time.

She’s now not eating or drinking at all and has a syringe driver giving her a constant feed of pain relief. I only know the words ‘syringe driver’ because of work.

Then the vigil starts and Dad reports Mum is sleeping but she’s doing ballet with her arms – they are raised elegantly up to the sky and I watch this on a video call and Google it – ‘terminal agitation’ – quite common at the end of life. Maybe Mum’s arms are so graceful because she did do a lot of ballet when she was younger? Anyway, that is enough to get me on a train from London that evening as it seems a sign that the end is near.

A lovely nurse at the home tells me that it won’t be as quick as I think. Without any additional crisis, someone without food and drink can easily last a week or more. I feel a bit crazy not knowing how long we’ve got and if we can keep Mum pain-free.

The importance of the vigil

I don’t know how I did it on reflection, but I still went away that weekend on a long-planned visit to my daughter at university, leaving my sister and Dad with Mum. I got back Sunday evening and was by her bed again on the Monday. We all were.

I was so pleased to hear Mum had had a blessing and communion from a priest over the weekend and although you wouldn’t have known she was even aware, this was essential – her faith was very important – she was even ordained at 66.

She definitely seemed different to 3 days previously – to be frank she looked like she was dying. She was sleeping even more and with her mouth wide open – this is common. Again I saw the value of the training we offer at work – mouthcare at the end of life – another skill I hadn’t realised is so important.
There are some disturbing noises made by people near the end of life, a little like choking, but the nursing home managed all this very well to make Mum as comfortable as possible. I know from the wonderful Dr Kathryn Mannix video we use at CARE, that this is all very normal. I showed my sister the video to help her too.

They say hearing is the last to go and we chatted to Mum lovingly, but with advanced dementia you sadly don’t know what is being understood. Touch felt more important and I stroked her lovely soft warm hand and her hair. The care home brought us tea and snacks. There were tears, memory-sharing, music and singing, and of course intense watching for the moment ‘it’ might happen. ‘You can let go Mum, we are all here.’

Then the awful decision in the evening about whether to go home – we were shattered. We just all sensed that she wouldn’t see the morning. I noticed her breathing rhythm had changed subtly. It had somehow been an incredibly special day, one I will remember forever, and one I am so grateful I didn’t miss. We had a group hug and said our heart-breaking goodbyes to Mum. I don’t know how we walked out of there but I think we also thought Mum might like some peace now.

The call came at 1am

We all drove back to the care home. We had to make a quick decision about this because the body can be collected very fast…within an hour or two. I caught my breath when I walked into the room. I went over to Mum to kiss her but she was so very gone. I just kept thinking about her recent warm hand, her chest rising and falling, it wasn’t much but it was life. There was no Mum there now.

But this realisation meant we could be practical and took the personal items from the room that we’d want to keep, avoiding a visit to an empty room the next day.

What a strange night. I did call the care home a couple of days after to thank them for everything – the manager shared how much she loved our family and would miss us.

It was what I think you would call a ‘good death’, and as a colleague at work said when I tried to justify us heading home that night – dying is a journey, not just that last breath. We’d all been on the journey with her and she would know that we’d been there with her along the way – for this final goodbye after the very long goodbye.

Reflection time

If you are having your own journey with a loved one with Alzheimer’s, I hope this gives you some insight into how things might go at the end and to know that I understand it’s hard to make certain decisions. We are never going to say we did everything perfectly during these years but it wasn’t for lack of love.
I feel the one and only gift Mum’s dementia has given to me is that with my years of anticipatory grief I am not now hit by a tidal wave of emotions that will bowl me over – instead I feel reflective and relieved. I feel full of love and gratitude for Mum in a very intense way and it’s like a warm blanket. Extra comforting because I can have these feelings without one half of my brain fretting about how she is doing today. Instead I know she’s at peace.

In these weeks since her death we are having the experience of the old Mum being brought back to us in all the tributes and messages. We are brimming with pride for the woman she was and what she meant to everyone.

I feel we’ve been in ‘limboland’ these last years. Years where Mum couldn’t remember anything about her past life or indeed who we were to her. We couldn’t mourn collectively – for her loss of this vital part of human existence of knowing who you are and what you have done in the world. Now instead we can collectively celebrate her full life before the dementia.

An image of an old Kellogs cornflakes advert, featuring Pippa Moss' mother.
Mum’s first acting job

I have thought about this too – you can’t write off the last 4 years. That was part of Mum’s life, you could say a very cruel part. However, although her world got smaller and smaller, I learnt the value of a smile and a chuckle. It’s not much to give others when you used to be an actress entertaining, a business woman encouraging women up the corporate ladder, and later a priest giving comfort and amazing sermons – but if it’s all you can now offer it certainly can make a daughter’s day.

Empowering Nurses, Improving Care: The Impact of HELP’s Development Programme

A logo with the acronym HELP: Hospice Education Learning Partnership

When one of the participants shares that the education course or programme they’ve just completed has changed their life, it’s probably safe to say it’s been a success.

When two make that claim about St Christopher’s Nurse Development Programme, it looks like it’s well and truly started to fulfil its aim of nurturing and sustaining a thriving workforce of nurses who care for individuals with serious advancing conditions and those who are grieving.

For the programme’s commissioner, Kate Heaps, Chief Executive of Community Hospice and ICB palliative care Clinical Lead, and Leonor Pacheco, who designed and project managed it for St Christopher’s, this positive feedback is gratifying but only one part of the story.

Yes, one of the goals was to empower early career nurses to improve end of life care skills, but they also wanted this cohort of 30, representing all settings, to share their new-found skills and knowledge with colleagues, thus delivering systemic change. Listening to those who’ve just finished the programme, that’s exactly what’s happening.

Tope Idowu, who only qualified in January 2025 and works as a District Nurse for Oxleas NHS Trust, speaks for many of her fellow programme members when she says she was immediately drawn to it, in the hope it would help her overcome her fear of caring for people at the end life.

Whenever I’ve had a palliative patient, I’ve been terrified thinking what am I going to say, how will I do the assessment and will I be supportive enough for them and their family. So, I didn’t need a second invitation.”

When it came to the content, it was the mix of the theoretical and practical that really struck home for many, as evidenced by Harmit Thaker who graduated in 2013 and, during the course of the programme, was promoted from Band 4 to Band 6 working in geriatrics for Lewisham and Greenwich Trust.

“I have learned so many things – sensitive conversations, communication skills, how to use a syringe driver, symptom management and other practical skills. So many things. It’s totally exceeded my expectations.”

With the assistance of the Hospice Education and Learning Programme (HELP), Leonor recruited colleagues with a wide range of experiences to teach at the sessions. Both Leonor and Kate were also determined to ensure the nurses enjoyed first-hand experience and the week-long placement at either Community Hospice or St Christopher’s had a profound impact on participants – perhaps none more so that Bukola Adedoja who works for Guys and St Thomas’ Trust (GSTT), having qualified three years ago.

“The placement was very interesting, and I really enjoyed it because I was able to do more practical things, not just in the class,” says Bukola.

“I was able to see so much. My mentor gave me lots of knowledge about home visits, bereavement, how to talk to patients and families when someone dies. I had to support a patient with medication and talk to the family. It was a lot, but I enjoyed it so much.”

That’s not to say the ‘classroom’ element of the programme didn’t land well too. Doris Frisby, who started the year as a District Nurse at Oxleas  and finishes it as Practice Development Nurse in End of Life, enthused about the monthly sessions.

“I couldn’t wait for the next module. Every time we came in it was a wealth of knowledge and was so good.”

Likewise, Tope said: “The lecturers were really brilliant with their experience and knowledge that they had to share.”

“I couldn’t wait for the next module. Every time we came in it was a wealth of knowledge and was so good.”

Likewise, Tope said: “The lecturers were really brilliant with their experience and knowledge that they had to share.”

It’s the transformational effect the programme has had that’s really striking.  Words like ‘fortified’, ‘huge’ and ‘grown’ only scratch the surface.

Tope identifies the programme as the source of positive change in her co-workers as well as herself.

“As a result of this course I have been put in charge of my palliative caseload, and we have a very big palliative caseload. It’s a lot of work, but doing this programme means I’ve been able to take on this responsibility. I’m so glad I can do this.

“The programme has fortified me as a nurse and as a person too. I lost my sister during this course and some of the things I have learned have really helped me and my family. It’s empowered me to be less anxious around the end of life. I now feel able to empower colleagues and families too.”

Tendai Mvura, a three-year qualified Staff Nurse in urology at GSTT, recognises the impact the programme has had on her team too, but most of all on herself.

“I have really grown in the last year and am so much more confident. When we have a palliative patient now I know how to care for them with confidence using the information we have gathered here.

“Before this programme I thought I wanted to be an oncology nurse. Now I want to be a palliative Clinical Nurse Specialist. It has changed my life, not just professionally but personally too.”

The ‘platform’ of knowledge and confidence provided by the programme has had an equally profound effect on Doris Frisby.

“It has changed me as a nurse. When I joined, I was a District Nurse and during this time I have been promoted. This course helped me in my interview, has helped my development as a nurse as well as the families I support.”

All of the nurses gained a better understanding of the importance of taking care of themselves too – perhaps best described by Harmit.

He said: “Personally, I am looking after myself better. It can be overwhelming and to look after others the first thing you need is to look after yourself. For me, that means taking breaks, meditation, taking exercise and eating good food. The impact is huge.”

With 12,000 people a year dying in Southeast London, Kate Heaps, while pleased with how the programme has gone for the first cohort, acknowledges that the programme may only be scratching the surface. When you review what she says they’d set out to do, it’s hard to rate the programme as anything but a success though for those who completed it.

“We wanted to create a programme that exposes nurses to palliative care experiences and to give them a flavour of what hospice care looks like. We also wanted to increase their general level of knowledge and confidence so they can then share that with their colleagues to enable positive change in their respective work setting.”

For Leonor the change has been tangible.

“You can really see the difference,” she says. “The stories the nurses now come and tell are positive. They arrive at the sessions and tell us things went really well. You can see how it’s impacted their practice. Our goal is not for them all to move into palliative care but to upskill them because most people don’t die in specialist palliative care.”

There are 30 places available for the 2026 programme and applications are open until Sunday 4 January. Find out more and register here.

Global Palliative Doctors Network

Ros Taylor
Ros Taylor

When palliative care physician Ros Taylor reflected on the Global Palliative Doctors Network (GPDN) WhatsApp group, her words captured its essence — five guiding principles for a happier life: being connected, staying curious, continuing to learn, giving knowledge and support, and keeping the mind active.

These principles lie at the heart of GPDN — a community built on connection, curiosity, and collective growth. What began as a simple WhatsApp chat among doctors has evolved into a global movement that transcends borders and brings together physicians dedicated to improving palliative care worldwide.

It all started in October 2024, when two palliative care physicians — Dr. Mujeeb Rahman (India) and Dr. Shafika Banoo (United Kingdom) — attended the Masterclass Course in Palliative Care in Kerala. They created a WhatsApp group to connect colleagues working in palliative care. Initially a space to share questions and experiences, it quickly became a vibrant hub of exchange and support.

Four women are standing together outside smiling.
Marie Cooper, Caroline Philips, Heather Richardson, Shafika Banoo.

Doctors from every continent joined in — discussing complex cases, offering advice, sharing ideas, and supporting one another through the challenges of their work. What emerged was more than a network; it was a sense of belonging — a global family united by compassion and purpose.

Members describe the GPDN WhatsApp group as a “global staffroom” — a place to offload, reflect, and exchange ideas. Within minutes of someone posting a question, responses arrive from across the world. Conversations range from clinical dilemmas to compassionate guidance on supporting a patient’s repatriation home. In these exchanges, borders fade, and every doctor is reminded that they are not alone, no matter how remote their setting or how demanding their day.

While WhatsApp proved a powerful starting point, it soon became clear that not all doctors could access the platform. For some, connectivity barriers made participation impossible — a challenge that felt at odds with the spirit of inclusion at the core of GPDN.

A large group of people sitting together

To bridge that gap, on 27 September 2025, the team launched the GPDN website — a new online platform that extends the network’s reach far beyond a single messaging app. The website serves as an inclusive hub for communication, learning, and collaboration, ensuring that any doctor, anywhere in the world, can connect, contribute, and grow alongside peers.

The GPDN is guided by a diverse and passionate team representing regions across the globe — including Mexico, South Africa, Australia, Bangladesh, the United States, and the Philippines. It also works closely with the Global Palliative Nursing Network, coordinated by St Christopher’s. Both St Christopher’s and the Institute of Palliative Medicine (IPM) recognise the importance of these networks in supporting clinicians and are committed to fostering their growth to help reduce inequities in end-of-life care around the world.

Across the globe, palliative care remains under-resourced and, in many places, misunderstood. Too often, patients and families face serious illness without the comfort, guidance, and dignity they deserve. By connecting professionals, sharing resources, and raising awareness, GPDN aims to change that reality. Every message, discussion, and new member strengthens a shared commitment to improving patient care — one connection at a time.

Today, the Global Palliative Doctors Network connects more than 700 doctors across over 60 countries — a testament to how shared purpose can grow from the simplest beginnings. From a handful of messages on WhatsApp to a thriving international community, the GPDN story is proof that when doctors connect, learn, and support one another, the ripple effect can reach far beyond screens — transforming care, one conversation at a time.

If you’d like to learn more about GPDN, we invite you to explore our website at thegpdn.org. And if you’re a physician involved in palliative care, be sure to join our WhatsApp group to stay connected and share insights with fellow professionals.

30 Years of Progress: Inside the MND Conference Shaping Care and Research

St Christopher’s and King’s College Hospital provided delegates with a packed programme of expert speakers to cover some of the most important issues affecting patients, at their 30th MND conference. Reviews of the latest research into how best to manage choking, feeding, twitching, ventilating and communicating as well as how best to assess capacity, were among the key topics.

Delegates heard two different perspectives of the right time for a gastrostomy, with speakers approaching this difficult decision from the point of view if a specialist ventilation unit – the Lane Fox Unit at Guys and St Thomas’ (GSTT), while Teresa Leahy from University Hospital in Galway and Dr Emma Hall, Consultant at St Christopher’s provided the palliative care perspective.

Dr Emma Hall, Consultant, St Christopher’s

Dr Michelle Ramsey, Respiratory Medicine Consultant and Senior Specialist Dietician, Angela Reddy, both from GSTT, explained their decision-making process that includes discussions with the consultants from gastro, respiratory and cardio, as well as the patient.

They raised the growing issue of extreme high and low body weight and how this increases the difficulty of the PEG procedure.

Patients who used Non-Invasive Ventilation for more than four hours a day, Michelle said, tended to have a higher survival rate with a PEG.

Teresa reported that she and her colleagues in Galway wanted to design an evidence-based guide for timely RIG insertions and to that end analysed the experience of 25 patients. The mean time between insertion and death was 11.6 months, she reported. Positively, all but three died in their preferred place of care.

A review of gastrostomies over the last three years at St Christopher’s showed similar findings, said Emma Hall who added that in addition to the MND MDT that has been established, open information sharing sessions with people considering tube feeding would be a positive next step.

The thorny issue of mental capacity was subject to a one-hour presentation by solicitor Henry Frydenson who provided delegates with several key takeaway messages.

Firstly, was being clear on the meaning of ‘mental capacity’. He emphasised that assessing someone’s capacity relates only to their ability to make a specific decision at a particular time.

In assessing someone’s capacity, there are two stages, functional and diagnostic and there are five basic principles:

Henry stressed the importance of record keeping to aid any defence, should there be litigation.

Being clear about the distinction between an Advanced Statement and an Advanced Decision was a further key takeaway. The former may provide useful information about a person’s wishes, but, like a DNAR and unlike an Advanced Decision (AD), it is not legally binding.

For that AD to be binding though, it must be signed, witnessed and specify that it applies even if the person’s life is at risk.

Dr James Bashford, NIHR Clinical Lecturer in Neurology at King’s, reported on a year-long research project to learn more about muscle fasciculations in people with MND and to establish if these could provide biomarkers to show progress of the disease and assist with drug development. He concluded that fasciculations could be used as a fast-track diagnosis tool and previewed an upcoming study that will use this to monitor the effectiveness of the drug Tofersen.

That led neatly into the update on clinical trials, provided by Dr Jemeen Sreedharan, Wellcome Trust Senior Research Fellow at King’s.

Nine patients are currently receiving Tofersen at King’s but, while it is approved in the US and EU, we’re still awaiting a decision in the UK, despite evidence it slows disease and prolongs life, Jemeen said.

There are a number of other trials in progress in the UK, being conducted faster and more effectively than previously, including one to measure neurofilament levels.

In terms of prolonged survival times, Dr Esther Hobson provided delegates with a review of her research into the effectiveness of Non-Invasive Ventilation (NIV). She described it as the most effective treatment – specifically in people who used it for more than four hours a day.

Effective communication of its benefits and ongoing monitoring and support are key to increasing the number of people using NIV, Esther added, breaking this down to three key actions: Enquire, Explain and Normalise. Providing people with a tangible goal which NIV could make more achievable is an effective way of helping people maximise what matters most to them.

For people to hear her authentic Cockney voice, was certainly amongst the things that matter most to Yvonne Johnson, a woman living with MND who, along with her devoted husband Orville, provided an emotive and compelling slice of lived experience.

The couple were invited to share their experience at the conference by Dr Richard Cave, Speech and Language Therapist – Co-Director of the Centre for Digital Language Inclusion at UCL’s Global Disability Innovation Hub.

Yvonne is one of a growing number of people using speech recognition technology pioneered by elevenlabs which, along with Centre for Digital Language Inclusion at UCL, is, Richard said providing people with the hope of maintaining their identity for longer. Rapidly, the centre has developed speech recognition tools in 10 African and five European languages which are capable of creating synthetic versions of people’s voices in under a minute.

A group of people sitting at a conference

Richard described this as ‘democratising technology’.

In terms of symptoms that affect a large proportion of people with MND, choking is right up there. According to Dorinda Moffatt, MND and Neurorespiratory Specialist Practitioner at Prospect House Hospice in Swindon, it affects 70% of patients.

Extraordinarily though, Dorinda added, an exhaustive search uncovered practically no research papers on choking. So, she, along with Dr Sara Mazzucco, Consultant Neurologist at Great Western Hospital, have embarked on a three-year research project funded by the Motor Neurone Disease Association with the expressed aim of identifying effective ways of helping people who do choke.

Dr Mazzucco said: “We can categorically say that it is a neglected symptom despite being important to people living with MND, their carers and health care professionals.” One theory for this, is the use of the word ‘choke’, Sara and Dorinda believe.

A clearly designed and widely disseminated guide is the desired outcome.

The conference’s final session focused on the individual not the disease, as Mandy Bruce, who leads the Psychological and Spiritual Care team at St Christopher’s, shared some of the work she and her colleagues have done with people with MND and their motivation.

“Being heard and valued is so important,” Mandy said. “Especially when identity is being lost. Art therapy can help people strengthen their inner resources to help hear the suffering.”

Learning disabilities conference paves way for progress

One hospice employs a full-time Clinical Nurse Specialist (learning disabilities), some research now exists into the experience of people with learning disabilities at the end of life, and a collection of resources have been created to improve communication with this patient group about issues surrounding death and dying, but there’s so much more that needs to be done.

That was the overwhelming takeaway message from St Christopher’s first ever Learning Disabilities and Palliative Care Conference held on 10 October.

In the day’s final session, Michele King, St Christopher’s Social Work Team lead, provided delegates with a message that captured the theme of the whole the conference, as she urged them to provide people with learning disabilities with the tools to make their own decisions.

It’s about liberating people with learning disabilities, not rescuing them. Ask yourself, ‘would I be treating someone without learning disabilities in this way’.”

Two women sitting together
Phoebe Mooney, Clinical Nurse Specialist for People with Learning Disabilities (left), Emma Hall, Palliative Consultant (right)

Delegates had earlier been provided with examples of current best practice as well as an update on the expanding body of research on this important subject that affects approximately 2% of the population and yet sees almost four in ten of them die an avoidable death – twice the proportion of the rest of the population.

The conference was the brainchild of St Christopher’s Palliative Care Consultant Emma Hall and Phoebe Mooney, the first Clinical Nurse Specialist (Learning Disabilities) to work in a UK hospice.

Phoebe began the day spelling out that issues facing people with learning disabilities – that they’re less likely to have access to palliative care and so less likely to get the care they need when they need it. This is exacerbated by the fact their symptoms are more likely to go undetected for longer, so they receive a later diagnosis.

These stark observations were rendered even more concerning by the findings of the The Learning from Lives and Deaths – people with a learning disability and autistic people (LeDeR) programme, shared by Professor Henk Parmentier, Croydon GP and Croydon Neurodiversity Clinical Lead. Most concerning of all was the revelation that people with learning disabilities die almost 20 years younger than the rest of the population.

A number of speakers talked about the problem of delayed diagnosis. One reason for this, Phoebe said, is clinicians’ false assumption that their health issue is related to their learning disability. She urged people to ‘always think physical first’.

Through Phoebe’s concerted outreach to learning disabilities organisations, St Christopher’s has increased its caseload to 40 patients, almost three quarters of whom she and colleagues support to live and die in their own home. Simply making clinicians in the community aware that they can refer these patients directly to the hospice has made a marked difference, Phoebe added. 

She also shared best practice and the latest research with her hospice colleagues, while supporting care homes in the local area as well as preparing families of people with learning disabilities for their deaths.

Tim Phoebe and Harriet

Sharing photos of some of her patients, Phoebe said:
“Behind every photo is someone who is very special.”

Phoebe (left), Tim (centre), Harriet Hughes, Clinical Paramedic Practitioner (right)

Several speakers built on this important sentiment, sharing how staff and fellow residents in care homes needed support to prepare for their patient’s and friend’s death.

In fact, the importance of appropriate collaboration and communication were also key themes of the conference – whether that’s co-creating resources with people with learning disabilities and fellow professionals or running regular clinical case meetings with a wide multi-disciplinary team.

That kind of co-creation is exemplified in the Victoria & Stuart project, run at Kingston University and Professor Irene Tuffrey-Wijne and Dr Andrea Bruun inspired the audience with a number of short films demonstrating the work they do with their team of researchers with learning disabilities – including the end of life care toolkit they’ve created.

Six speakers standing beside each other smiling

Being prepared to offer a measure of flexibility for this patient group was a further key takeaway from the day. Clinicians were encouraged to consider reasonable adjustments such as arranging hospice visits before a stay, extending appointments, following up on no-shows, and arranging for consistent staffing.

Emma Hall said while it might take an army of people to help someone die at home, in line with their wishes, people with learning disabilities have as much of right to do so as anyone else.

One major barrier to this is late diagnosis and that, Prof Parmentier said, is often down to a failure to carry out routine cancer screening for people with learning disabilities. Raising awareness and distributing screening kits in care homes and conducting annual health reviews can make a significant difference, he added.

Several of the speakers shared patient stories either verbally or on video to illustrate examples of good and not so good experience and two family carers shared their experience in person. Sarah exemplified the importance of communication – in a case study shared by Sue Marsden, Clinical Nurse Specialist Leader, Greenwich and Bexley Hospice.

By recognising Sarah’s risk of dying, Sue and her colleagues have been able to work with her and her friends and family to plan for it. Acknowledging the risk doesn’t mean you’re giving up on that patient, she stressed, emphasising that she’s now known Sarah for 14 years.

Any delegates seeking a call to action, got what they were looking for, from Jane Kachika, Clinical Quality Improvement Senior Manager, Learning Disabilities and Autism at NHS England, said:
“Every statistic represents a family, an individual and a story – it is not just a clinical concern but a moral one. Yes, there is some hope, but this must be matched with future action.”

From Conversation to Connection: How St Christopher’s Is Listening to South East London’s Communities

A brand-new project designed to deepen communities’ understanding of St Christopher’s and its awareness and consideration of their cultural needs and wishes, and a newly formed relationship with a local community group, are just the latest illustrations of the hospice’s commitment to achieve these goals through the ongoing work of its Community Action team.

Developing close ties with Pineapple Club, a Black Caribbean/African community group in nearby Anerley, and running the first of what they hope will be many community-based conversations addressing cultural and religious rituals and traditions, the Community Action team hope they’re on the way to better reflecting the needs of the diverse population of South East London.

Busara Drezgic, Community Engagement Programme Manager, explains what the team is hoping to achieve both with these two projects and more widely:

“What we’re trying to do is increase awareness of our services and who they’re for, to really learn what we didn’t know and to look at ways of embedding that new knowledge into our practice and to relate to communities well.

Understanding that for some people discussing topics like end of life care is taboo, is an important first step,

Some backgrounds maybe don’t want to talk about death and dying – we need to know what kind of language to use and how best to care and support people in the community.”

says Busara.

Busara and her colleague Jarmila Whitely were invited to visit Pineapple.

An initial meeting with about 80 of the club’s retiree members was an opportunity for Busara and Jarmila to share some information about St Christopher’s and gauge understanding of what the hospice is and does.

“I was pleased that when we asked the question ‘What matters to you at the end of life’, lots of hands went in the air and everyone wanted to talk. People were saying they wanted quality care, some talked about spiritual attendance and others said it was about having family around them.

“It’s all part of our commitment to attend to the priority populations that we’re not seeing enough of, understanding who’s not aware of us and appreciating what St Christopher’s looks like to them. We’re looking to send out a picture that this is a place where everyone can feel welcome and comfortable.”

On 6 August, Jarmila and Busara joined Pineapple Club’s celebration of Jamaica Independence Day and the club’s CEO has subsequently been in touch to say they’d like to host an event for St Christopher’s.

As well as potential visits to the hospice, the Community Action team has offered Pineapple Club members the chance to engage in the second recently launched project – Spiritual Life and Intercultural Exchange  or SLICE. This three-part series of two-hour community-based, facilitated conversations gives groups of eight to 10 people the chance to explore what cultural and spiritual needs at the end of life really mean, to share what feels relevant from their own backgrounds, and to consider what matters most to them while learning from one another.

“It’s about really unpacking people’s understanding of and relationship with culture, religion and spirituality when it comes to end of life,” says Busara.

 “We want to understand what really matters to people from a non-medical point of view and we’re also going to invite members of the clinical teams here at St Christopher’s so that we can better inform the end of life care we provide.”

SLICE has launched in Southwark and there are plans to initiate sessions in Croydon and Lewisham shortly.

Busara is keen to emphasise that it’s early days for SLICE and the relationship with Pineapple Club and both represent work in progress.

 “Success is continuing to raise awareness, to reassure those people who’ve previously felt underserved that we are working to the future and making positive changes and providing them with quality care that resonates with them as individuals, culturally and spiritually.

If we get it right, then that will have a positive impact on the next generation too.”



Join SLICE (Spiritual Life Intercultural Exchange)

If you are interested in being a part of SLICE (Spiritual Life Intercultural Exchange), visit our website for more information.

Brazil: A country in which palliative care certainly has a future  

The Premier Education and Culture Institute in Brazil and St Christopher’s Hospice in the UK have a long-term relationship, focused on a shared aspiration to build capacity and capability in health professionals and others through the offer of education and training in palliative and end of life care. Over the years, Premier has led the rollout of QELCA® (Quality End of Life Care for All) to over 51 institutions from 26 cities, and 122 palliative care professionals as facilitators. Through the Train the Trainer approach, at least 642 professionals in Brazil have benefited from palliative care educational interventions.

More recently, it has become a Beacon of CARE, also focused on delivering high quality education and training but with a broader portfolio of learning curricula and resources. The Centre for Action and Response to End-of-life (CARE) is part of St Christopher’s. Together, the two organisations are identifying opportunities for new courses in palliative care for people working in Brazil, then contextualising and developing courses developed by St Christopher’s to meet local opportunities and challenges. Premier, a non-profit education and training institute focused on training professionals in the public health system, is led by an extraordinary doctor and visionary Samir, who has drawn together family and others to pursue his vision for a more equal and fair society in which people can live, die and grieve well. 

This is no insignificant challenge. Brazil has a population of over 200m people, many of whom are subject to significant structural inequalities, including those related to health and end of life.  

Taking part of an Encounter experience in Sao Paulo

I was honoured to join Beacon colleague Manuela Salman and others from Premier at a recent “encounter” event in July, open to anyone in Brazil committed to advancing palliative care in this country. The four-day programme brought together around 380 individuals involved in adult and paediatric care, community and inpatient facilities, urban and rural services. The audience comprised a rich mix of students, senior clinicians, policy makers and volunteers. Together they shared local, national and global experiences of delivering palliative care, made connections and new relationships and explored opportunities for advancing palliative and end of life care in their country.

Specifically, the participants renewed their commitment to an advocacy social movement called Frente PaliATIVISTAS, which played a key role in the approval of Brazil’s National Palliative Care Policy—grounded in primary health care. The movement is now focused on securing funding for the policy, aiming to ensure that more people have access to high-quality palliative care, regardless of the inequalities they face. The four days included celebratory events, formal presentations, music, and a number of different exhibitions. Musicians, young children from the local favella, a world-renowned theologian and generous hosts brought perspectives beyond palliative care, contextualising the thinking of the encounter in wider issues of climate change, art, samba, jazz and human connectivity. 

Reflections on the encounter 

It is tempting to say more in this article about the detail the encounter. It provoked much thought I me. instead, I am interested to reflect on what UK palliative care services can learn from colleagues in Brazil that became evident in the encounter.

My desire to do this reflects a growing concern about palliative care in the UK. A long time actor in the field, I see a sector that appears to be shrinking – in terms of provision, voice and aspiration, despite significant growth and impact over recent decades.  Fears about funding are significant; anxiety in relation to a possible change in the law around assisted dying  are paralysing; and lack of investment in ongoing education and training denies organisations and their workforce to prepare for changing needs and opportunities. We, in the UK, could learn from Brazil, and specifically those who took part in “the encounter’. They struggle with many of the same challenges, but there is a strong sense of momentum. What I wonder, are they doing, that we could emulate in the UK to sustain our ambitions, energy and outputs in the future.  

Invest in relationships 

At the heart of the ambition, confidence and energy of the encounter was the belief in the value of everyone present and their different contributions to a new outlook for Brazil. The encounter began with an evening celebrating past achievements on the part of QELCA® centres, then some aspirational talks from teachers from the local favella and others who spoke of a different future for people living in Brazil, particularly those whose lives had been shaped by inequity. The connections and interest in others were perpetuating features of the encounter, culminating in a celebration at the end of the encounter in a local restaurant to which all attendees were invited. In the course of each day, people gathered at breaks, the start and end of the day to renew and strengthen relationships that had personal as well as professional value and were of an enduring nature. 

Be political

Despite the convivial nature of the event there was a strong and uncompromising call for renewed commitment on the part of the Government of Brazil to its promise of better palliative care for its population. The detail of the policy exists, but there is little investment in its roll out in practice. Whilst the flavour of the encounter was one of love and concern for each other, there was a resounding and unremitting demand for action on the part of politicians and others in positions of responsibility. Politicians from the Ministry of Health were invited and participated in the event alongside clinicians, generating a strong and shared sense of accountability. 

Look beyond professional services to redress inequalities 

One of the most notable elements of the encounter was the partnership evident between community led initiatives, particularly compassionate communities and hospital services, all working to enable people to live and die better, wherever they lived. Many of the professionals volunteering in community initiatives worked also in private hospitals. There was no sense of any hierarchy of value or expertise, instead a mutual appreciation of the different elements of care provided across a broad economy. Community led initiatives extended beyond informal care, incorporating elements of community life such as samba bands for children and young people. Stories of success included crowd funding for individuals in distress alongside organised responses. Professionals were keen to be seen to support community led initiatives and proud when they did so. 

Act generously

The founders of Premier Institute do not appear to require any acknowledgement of their role as leaders of long term and successful change. Instead, they work hard to acknowledge the contribution of others, drawing in new and different actors to reflect the breadth of agenda they have set. The programme drew on a wide range of contributors, recognised for past efforts and future offers. Their spirit of generosity was inclusive, clearly enjoying difference across individuals and groups. 

Address the future with courage 

Finally, the courage with which the encounter organisers attended to difficult issues, including that which might undermine their reputation was notable. Issues such as the vital role of palliative care in assisted dying and lack of professional advancement opportunities for some disenfranchised community groups were fully addressed, supported by the audience who listened with curiosity, and showed their commitment to a different world through active involvement in panel discussions and similar.

Concluding thoughts 

It would be easy to consider Brazil sufficiently different to the UK that there is little opportunity to find parallels that offer new and reciprocal solutions beyond that country. I believe that is that is far from the truth and key speakers from other parts of the world confirmed this to be the case also.

UK based speakers such as Allan Kellehear highlighted the value of the public health approach adopted by Brazil and the progress of its compassionate communities.  Mark Stoltenberg from the USA noted the huge advances towards greater universal access despite the inequalities. My own reflections acknowledged the highly relational approach to improving care in Brazil – a far cry from the often transactional approach to care that is increasingly common within the UK.

Moving forward, St Christopher’s is keen to perpetuate the partnership and learn from Premier Institute and its local partners. Premier Institute similarly acknowledges opportunities to build leaders and rehabilitation services via St Christopher’s CARE. We can see a much brighter future through our work together. Long may it continue 

Heather Richardson 

Why Don’t We Prepare for Death Like We Prepare for Birth?

Preparing for the birth of a child involves months of physical, emotional, and financial readiness. It’s celebrated despite its challenges. Yet, when it comes to death—the inevitable end of life—we often shy away from preparation and discussion.

Death is a universal truth, yet discussing it remains one of society’s greatest taboos. In today’s aging world, where life expectancy is longer but often accompanied by serious illnesses, there’s ample time to prepare. Despite events like COVID-19 bringing death to the forefront, it remains a daunting topic rarely addressed openly.

I once struggled with the silence surrounding death, especially after losing loved ones to serious illnesses like cancer. Growing through years in palliative care, I’ve come to understand why discussing death is crucial.

Historically, death was communal, happening at home within communities. Now, it’s medicalized—often in sterile environments, detached from its spiritual and social dimensions. Healthcare systems view death as a failure, avoiding discussions on dying and palliative care until late stages, which isolates and diminishes its importance.

In my nursing education, death was approached clinically, devoid of deeper discussions or preparations. It was only in palliative care that I learned to appreciate the human aspect of dying—a privilege to support people in their most vulnerable moments.

Religious teachings emphasize preparing for death, yet cultural taboos and modern anti-aging movements discourage these discussions. Families often avoid talking about death to maintain hope, inadvertently denying individuals the chance to reflect and prepare.

Embracing death as a natural part of life allows us to reflect on our journey and live authentically. It’s a spiritual process that can unite communities and foster deeper connections.

Breaking the taboo around death begins with open conversations—sharing fears, anxieties, and hopes. It’s uncomfortable but essential for personal growth and communal understanding. As Irvin Yalom aptly put it, “In learning to die well, we learn to live well.”

Questions to ponder

  • How would you feel about living your life all over again exactly the same way as you did before?
  • How often do conversations about death happen within your family and community?
  • What are things you find difficult when talking about death with patients? with families?

Farah Demachkieh
Nurse, Public Health Professional, Researcher in Palliative Care
Head of Quality, Research, and Development at SANAD

Co-founder and Vice President, Lebanese Palliative Care Nursing Association
General Council Member, Public Health Palliative Care International