Specialist heart failure nurse proves success of integrated approach

Witnessing the sudden death of a close friend leaves a mark on everyone. When, as in Isobel Jackson’s case that friend is only 34 and they’d been offered no opportunity to discuss their wishes or preferences for care, it makes a really serious impression – especially given that Isobel is a nurse.

Isobel Jackson, palliative heart failure advanced practitioner

To that point, most of Isobel’s career had been in emergency and acute care. But she decided to write her dissertation on heart failure following the loss of her friend.

Isobel explains: “She was my best friend of 22 years. We knew she had heart failure, but no one even told us there was a possibility she might die so soon or that she had any palliative needs. It really made me think about all the other people that must be in a similar situation, their needs, why they’re not being met and what could happen to them.”

The research for the dissertation opened Isobel’s eyes even wider to the barriers preventing heart failure patients from accessing palliative care. One of the key stumbling blocks she discovered was a failure for healthcare professionals to engage this patient group in open dialogue about their prognosis and the type of care they would like as the disease progresses.

Having completed her studies, Isobel took on the role of Heart Failure Nurse for St Christopher’s in Bromley in a project that’s seen the successful integration of palliative care and mainstream heart failure nurses and doctors.

What does that success look like? Isobel’s proud to relate that the success is threefold. A huge drop in hospital bed days, substantial cost savings and improved quality of life.

“By treating the psychological impact of a life-limiting condition and adopting a rehabilitative approach we’ve been able to add life to years and not just years to life.”

Building on that success in Bromley means Isobel and her colleagues are now engaged in extending their reach in that borough and are taking the model to Croydon and it’s certainly going to plan so far. The aim was to reach 150 new patients across Bromley and Croydon within 12 months. They’ve exceeded that target after just nine months.

Long term, she says, the hope is to roll it out across all the boroughs St Christopher’s covers. And, perhaps even more ambitiously, Isobel wonders if this integrated approach could be applied to other conditions, like say neurological.

“The benefit of having someone with experience of palliative care and heart failure means we can understand the journey of those people and work with colleagues to build a bridge between the different disciplines,” she adds.

Isobel’s keen to share real-life examples of the difference this integrated service is making to the lives of south London people living with heart failure.

She shares the experience of a woman in her late 80s who has dementia as well as heart failure. It came as a shock to her and her husband when the hospital referred her to St Christopher’s, and they didn’t understand that the condition was life-limiting nor see the need for palliative care.

“I went to see them with a colleague and the referral really hadn’t gone down well,” Isobel recalls.

“But we were able to win them over quite quickly because we were able to administer some treatment there and then that wouldn’t normally be done outside hospital.

“She went back to living a pretty good life, she received some rehabilitative care to build up her mobility and we supported them to get the benefits she was entitled to. We also spent time with them talking about end of life care, what mattered to her and her wishes.

“Her husband was particularly full of praise because he could see how the focus had shifted from treatment that wasn’t really working, to an emphasis on quality of life for them to spend together.”

It’s not just the patients and their carers who are feeling the benefit, Isobel says.

“The reception from our health colleagues across the borough has been so positive. Being a point of contact and another source of support has made a real difference. Doctors are saying thank goodness they’ve got somewhere they can go that gives them and their patients hope. And the engagement with and support from consultant cardiologists has been excellent. We’re both happy to ask each other for advice.”

In advance of our conference, Improving Palliative Care for People with Advancing Heart Failure, on 19 June, Isobel has a message for her colleagues across the sector.

“More and more hospices are starting to support people with heart failure, but we really need to progress this movement towards integrating the specialist support of the services and look at how we can support the specific demography of an area.”

“I would love to see heart failure nurses, specialist palliative care nurses, commissioners, consultant cardiologists and anyone who can help shape services for this large patient group come to the conference. We need to identify the role nurses can play and empower them to be at the heart of this change.”

Isobel will be speaking at the Improving Palliative Care for People with Advancing Heart Failure conference. To attend, simply click here.

Mother’s Day Reflection

Pippa Moss, Senior Education Support Officer at St Christopher’s CARE, reflects on Mother’s Day when her mother has advanced dementia.

I wrote about my mother in August 2022. On this Mother’s Day I wanted to reflect again on where we are and my feelings. There are a lot of feelings!

My mother’s Alzheimer’s has advanced so much since August 2022. She now needs hoisting, sits in a wheelchair all day and hardly talks. It’s getting harder to get a smile. She may vaguely have known us in 2022, now I would say she has no idea who we are. But she looks well, still enjoys food – especially a biscuit and a cup of tea. She can even still hold and drink it as I watch the wobbly cup nervously.

Music is less effective these days and it feels a while since I got her wonderful shoulder shimmy to Abba.

So this Mother’s Day I had the guilty choice of a two-hour commute to her care home and back – for her not to know it is Mother’s Day and that her daughter is visiting – or to enjoy my day with my own children.

Luckily my sister lives near the care home and will take her twin boys (very popular with the staff and residents!) to visit. I am so grateful that my sister and I can share the visits between us, we both find it harder but we are also building bonds with some of the other residents. Getting smiles and a chat from them is lovely too.

When I think about my Mum on Mother’s Day oh sorry Mum, I mean ‘Mothering Sunday’ as she always liked it referred to – I think about how I’d love to be able to go to church with her, sing hymns together and give her a big thank you hug and one of those little daffodil posies. Like we used to.

When I chat with her on my visits, I often just thank her out loud for everything she’s done for me, thank her for being a marvellous Mum for all those years, how proud I was of all her achievements, how well she did to turn out me, my sister and brother into happy adults – all, in my opinion, living her values.

With Mum having been such a social person with many close female friends, I set up a WhatsApp group called ‘Sally’s Girls’. Many of these ladies visit Mum too and we share happy photos, how she is doing and any little breakthroughs from the visit. One of my best visits was some months back when I danced in the garden in front of her and she said with a smile, “You are a funny girl.” I loved that so much.

I work at St Christopher’s CARE as a Senior Education Support Officer, and I have attended all our dementia training (in a support role but of course I listen too!). This has helped over the years to increase my understanding of this disease and to learn a few ‘tricks of the trade’ – I am not clinical but of course carers and family all work together with dementia.

If you are reading this and relating to this then I don’t need to tell you about this disease of the long goodbye, and how painful it can be for the family.

On Mother’s Day I will do all the remembering for you Mum – so many lovely memories of who you once were. We will be beside you as much as we can right until the end – I’m sorry I won’t be beside you on Mothering Sunday but I’ll be there another day soon which will be special anyway because I’ll look in your eyes, stroke your hands, and send love right into your soul and somewhere in your fuddled mind you will feel it.

Future Planning: Advance Care Planning Reconsidered

Our January conference saw participants keen to continue to engage in conversations about more effective ways of future planning. This is exciting and we will ensure there are follow-up events.

Colleagues in Canada have written a wonderful book on this topic – in May we plan to hear more about their work, and build on their thinking to establish next steps.
Heather Richardson, Director of Academic Learning and Action, St Christopher’s CARE

Continue reading “Future Planning: Advance Care Planning Reconsidered”

What we mean by managing pain beyond medicine

Andrew Goodhead

Our long-standing Lead Chaplain of over 20 years at St Christopher’s Hospice shares why contemplative care is such an important practice to ensuring complete care that is individual, and centred around the person

What is contemplative care?

“I think contemplative care is the practice or ability to actively spend time with people and enable them, through that time with them, to take them thoughtfully from a place that might be unsettling or disquieting to a recognition of peace or resolution. It’s about coming alongside and being with and working with them at their speed to talk things through or just having the ability to say things the family want to say but can’t say.”

Why is contemplative care important?

“When they began, hospices were not entirely clinical environments. There was a clear distinction between hospitals and hospices. Dame Cicely saw modern healthcare as very deductive and focused on making people better. It had abandoned and was not listening to those that were dying.

Dame Cicely’s approach was about a holistic understanding of human need as death approached and that could be for a prolonged period, rather than just the final few days. Some people stayed two years or more, there was an old people’s wing and daycare for children. The hospice recognised breadth of life and was about coming together to create a community.

Medicine didn’t have the upper hand and it was much more around the care of the whole individual. That’s something that can be lost when one profession appears to have the prominent voice.  It’s important that care isn’t overwhelmingly medical and contemplative care encourages doctors, nurses, and others engaged in supportive roles to a place of contemplative encounter – to be present with them and give something of themselves to those moments. That’s about the quality of the time spent and not the length of time.”

What are the benefits?

“It’s about having the ability to enable patients and those close to them to be heard – and for professionals to listen. Good evidence shows if you have a service that sits and listens, then the drugs bill goes down. It’s about simple things like maintaining death as a social event and not a clinical one.

For professionals the benefits include a greater sense of understanding, improving listening skills, and a greater sense of job satisfaction.”

Who should be involved in contemplative care?

“Everyone!”

How has the relationship between clinicians and those involved in spiritual and psychosocial care evolved in your time as St Christopher’s Lead Chaplain – almost 20 years?

“Dame Cicely drew people to work at St Christopher’s who shared her outlook on life. Increasingly doctors and nurses don’t have that same calling. That is a big change. We now have more people referred to us with more complicated conditions. Rather than just thinking that means we have to rely solely on more complex medication, we have to acknowledge that it needs more than one approach – not just one medical prescription.”

What can people expect at the conference?

“We’ll be looking to offer insights that will support everyone who comes along to look at their own practice in a new way. They might already be expressing their work in a contemplative manner, but perhaps they could do a bit more. It’ll also be about encouraging people to see different ways to approach this method and to support people; finding the best way to meet people as they are and treating them as whole human beings. It can involve silences and feeling comfortable saying I haven’t got an answer – seeing our human side and that we’re not invincible.”

What would be your ideal scenario for where contemplative care should be in another 20 years?

“I would hope it remains a person-centred offer of care at the end of life. Sometimes that will mean medicine sits in the passenger seat while other supportive types of care take the wheel to allow a person and those close to them to feel they are heard and seen and responded to in an appropriate and timely way.”

Why should people attend The Case for Contemplative Care conference?

“This will change your life – no better reason to come.”


If you are interested in The Case for Contemplative Care conference, get more information about speakers and programme below here.

Visual graphic with illustrated person with long hair and icons related to nature, hobbies and thought.

The importance of caring for pain beyond medicine

In March, St Christopher’s is hosting a new conference: The Case for Contemplative Care. We asked Mandy Bruce, who leads our Psychological and Spiritual team and whose idea the conference is, to explain the basics of contemplative care, the benefits (for patients and practitioners), how the conference came about and what delegates should expect on the day. 

Continue reading “The importance of caring for pain beyond medicine”

Do you feel safe in our care?

Starting with my own experience

Marie Cooper
Marie Cooper

Undergoing inpatient treatment some years ago, I wish somebody had given thought or even asked me how safe I felt whilst in hospital.

There were times when I felt safe, seen, and cared for, when I could ask questions and felt I had a connection with those caring for me.

But there were too many times when I felt unsafe and vulnerable and unable to speak due to fear of being judged as unreasonable.

You might be thinking that this is an exaggerated response, particularly given my background as a nurse, my experience of working in hospital and my usual confidence to articulate important needs. What I learnt is that these are not sufficient and for many, their experience of fear may be amplified. The literature identifies several key factors that often contribute to patients feeling unsafe[i] .

I am struck by the fact that this too was my experience. Such factors included; lack of information with regards to decision making, not being able to voice my concerns because nobody asked or had time, it would seem. Being attended to by nurses who were unskilled in technical procedures and had poor practice. I recall having to be vigilant all the time to ensure my physical safety as best I could and not feeling able to voice any of my worries.

How can nurses respond?

In the dynamic world of healthcare, nursing must stand as a beacon of compassion and advocacy[ii] .The practice of nursing is deeply rooted in the art of fostering safety and connection, not only in physical care but also in emotional support.

The Polyvagal Theory which I invite you to explore as a means of understanding how to change patients’ experience from one of isolation and fear to one of feeling safe and held, is a groundbreaking concept introduced by Dr. Stephen Porges[iii]. I offer it because its content resonates profoundly with the principles of nursing. This theory emphasises the crucial role of safety and connection in shaping human responses to stress and interactions. It serves to validate the fundamental values of nursing, and specifically highlights how safety and connection are core tenets in providing therapeutic relational nursing.

This all became clear for me in the light of my own experience as an inpatient when I read a book by Deb Dana introducing the Polyvagal Theory[iv]. It resonated powerfully with what I sought from those caring for me – to have a sense of safety, to be ‘seen’ and have some degree of connection.

Understanding the Polyvagal Theory

The Polyvagal Theory explains how the autonomic nervous system responds to different social and environmental cues. As humans, we like our fellow creatures in the animal kingdom, are constantly scanning our environment for safety. Think about when you walk into a party or work event alone, how are you feeling, what are you looking for?

 Dr. Porges introduced the concept of three hierarchical neural circuits, each associated with a distinct physiological state.

  • The ventral vagal complex represents a state of safety and connection, promoting social engagement and emotional well-being.
  • The sympathetic Nervous system represents our fight-or-flight response
  • And the dorsal vagal complex is associated with shutting down and immobilisation when the perception of danger is imminent. One can go into a state of inertia and at worse dissociation as a way to cope.

Appreciating these different states is a good place to start.

Then recognising how we shift between them and how we feel in each state helps us realise that our ability to connect, manage ourselves and our environment is not consistent. Different stimuli will move us from a positive place of social connection to one of preparedness to fight or flight, or at worst shut down and collapse.

As we become aware of these states we can start to appreciate similar experiences on the part of people in our care and those we work with. Shifts from one to another are not necessarily to be feared but benefit from recognition and comprehension. Once we have insight, we can then work to address their impact on our lives.

SWTT Polyvagal Chart 2023 – Ruby Jo Walker LCSW

The visual is shared with kind permission from https://www.swtraumatraining.com/polyvagal-theory

Creating a sense of Safety in our Nursing

The fundamental role of nursing was articulated as early as Florence Nightingale. She wrote about the importance of vigilance, keeping those in our care safe and creating an environment to support their healing and recovery or maintaining comfort in their dying.  She recounts how she sits with a young dying soldier reading his letters for him and finding out ‘what is in his heart [v]‘ .

The Polyvagal Theory underscores the importance of creating such an environment that promotes feelings of safety and security. Nurses play a pivotal role in establishing this environment by enacting their values, being competent in practice and offering a therapeutic presence and relationship. Feeling safe not only reduces a person’s stress and anxiety but also enhances their ability to ask for what they need, regain agency and to feel confident to express how they are really feeling.

The need for connection

Connecting with those in our care is integral to the practice of palliative nursing[vi]. The Polyvagal Theory emphasises the ventral vagal complex, which is activated when individuals feel safe and connected. In nursing, fostering a sense of connection involves generative listening, empathy, and building trust[vii]. Nurses who show genuine concern and engage in therapeutic communication create a bridge of trust that can significantly impact patients’ emotional well-being. This sense of building connection should also extend beyond patient nurse interactions to encompass the entire healthcare team, working collaboratively to create a psychological safe workplace.  If you are working in a person-centred culture everyone matters and should feel safe and connected in some meaningful way.

Reducing Stress and Anxiety

Working in the field of palliative care we know stress and anxiety accompany a person who is ill, living with uncertainty and facing loss. The Polyvagal Theory highlights the physiological responses associated with such chronic stress the resulting impact on overall health which ensues.

Nurses armed with this knowledge can assess and implement care strategies to mitigate stress, such as creating calming environments, offering relaxation techniques, and employing distraction therapies. By acknowledging and addressing patients’ emotional states and existential worries, we can contribute to a positive shift in the autonomic nervous system, promoting rest, healing, and ultimately a sense of peace.

Building rapport

Rapport helps build trust and I would argue is an essential aspect of relational nursing care.  The Polyvagal Theory underscores the significance of building trust as it aligns with the ventral vagal complex’s activation and the resulting state of safety and connection. In the case of my dying father’s care, I witnessed a nurse create rapport through her authentic presence and communication in one short moment of care. The impact on all of us was palpable and I will never forget it. When we are experienced as being trustworthy there is more likely to be more honest communication, leading to more person-centred decision making, better care experience and improved outcomes.

Conclusion

The Polyvagal Theory has profound implications for the nursing profession, shedding light on the neurophysiological underpinnings of safety and connection. As caregivers, nurses hold responsibility for creating an environment that promotes emotional well-being and facilitates healing. By aligning nursing practices with the principles of the Polyvagal Theory, it assures practitioners and those we care for that what we offer is fundamental to our shared humanity; by forging authentic  connections with patients, we enhance the overall patient experience and outcomes.[viii] As the world of healthcare continues to evolve and at risk of becoming even more transactional, technological and interventionist, the unwavering focus on safety and connection reaffirms nursing’s vital role in fostering a more humane, person-centred care approach.

Connect with us through the Global Palliative Nursing Network

Our aim for the Global Palliative Nursing Network (GPNN) is to establish a worldwide network to provide peer support and professional development for all nurses working in palliative care – wherever they are.

We’re designing it to complement existing networks following recent engagement with over 1200 nurses around the world interested to advance their practice.

This network follows the recent success of our community of practice for pioneering nurses, the Global Fellowship in Palliative Care we run with Institute of Palliative Medicine, Kerala and two UK specific nursing programmes.

Find out more and join the GPNN


[i] Kenward L ,  Whiffin C , Spalek B. Feeling unsafe in the healthcare setting: patients’ perspectives British Journal of Nursing 2017 26:3, 143-149

[ii] Abbasinia M, Ahmadi F, Kazemnejad A. Patient advocacy in nursing: A concept analysis. Nursing Ethics. 2020;27(1):141-151. doi:10.1177/0969733019832950

[iii] Porges, S. W., Porges, S. W., & Porges, S. W. (2011). The polyvagal theory: Neurophysiological foundations of emotions, attachment, communication, and self-regulation

[iv] Dana, D., & Porges, S. W. (2018). The polyvagal theory in therapy: Engaging the rhythm of regulation. W.W. Norton & Company

[v] Nightingale F. Notes on nursing ‘what is it, what it is not ‘ Florence Nightingale   1968 Dover Pub p48

[vi] Davies B and Oberle K (1990). Dimensions of the supportive role of the nurse in palliative care. Oncology Nursing Forum. 17(1): 87-94

[vii] Leslie JL, Lonneman W. Promoting Trust in the Registered Nurse-Patient Relationship. Home Healthc Now. 2016 Jan;34(1):38-42. doi: 10.1097/NHH.0000000000000322. PMID: 26645843.

[viii] Johnston B and Smith L (2006). Nurses’ and patients’ perceptions of expert palliative nursing care. Journal of Advanced Nursing. 54(6): 700-709

MND conference raises awareness of disease and importance of patients’ voice

This year’s St Christopher’s MND annual conference was titled Road to Awareness. Whether it’s making trials more patient-friendly, reducing patient and carer fear around choking, accepting patients’ wishes to withdraw non-invasive ventilation, or simply just asking patients what matters to them, all of the speakers recognised this crucial element of care and support for people with MND.  

The stage for the conference, featuring a mix of clinical and research updates as well as lived experience, was set by its chair Dr Jemeen Sreedharan, Wellcome Trust Senior research Fellow and Honorary Consultant Neurologist, King’s College, London – our long-time partners on the conference.

Dr Sreedharan said that this long-running annual conference had grown and grown, still fulfilled the same objective of providing a multi-professional audience with the chance to share experiences and advances and understanding of Motor Neurone Disease (MND). But, he added, recent and current advances in research made for what he called ‘exciting times’.

Image of Dr Sreedharan

Update on gene therapy and clinical trials

Presentations by Professor Chris Shaw, Professor of Neurology and Neurogenetics and King’s and his colleague Professor Ammar Al-Chalabi, Professor of Neurology and Complex Disease Genetics, provided some of the evidence to support Dr Sreedharan’s claim.

As Prof Al-Chalabi said, of all drugs trialled over the last 27 years, only four didn’t fail. But he said: “We are getting more hits in recent years and there is a signal of success. We are getting better.”

Positively, he added, while often there was less than one trial a year, there are currently six ongoing and that’s been the case for the last three years. “Interest in MND trials is rocketing,” Prof Al-Chalabi said.

Part of that uplift is as a result of greater investment. Prof Shaw has secured more than $100m for his trials and is in the process of raising another $100m. He shared details of the work he and his team have been doing with antisense drugs. A man in his 40s whose mother had died of the disease within two years, and who carried the same gene, progressed quickly to the point where he was in a wheelchair within nine months. But, being treated with the antisense drug he has maintained full power in his arms and full speech.

For families, Prof Shaw added, having a genetic answer can be reassuring, especially if there is an effective therapy as in that case study.

Prof Al-Chalabi picked up on the point about patients and families and the difficult task of striking the right balance between demand for a faster trials process against the efficacy requirements and need to give drugs the requisite time to establish if they really do or don’t work.

Patient advocacy is a two-edged sword, he said. It’s excellent when it pushes through treatment but can be destructive – for example when patients press doctors to prescribe drugs that haven’t been approved. Prof Al-Chalabi said he totally understood why people advocated for faster testing and approvals but it wasn’t helpful if it led to mistrust of the teams running the trials and doctors.

The multiple trials regimes that operate now, including the traditional single drug approach, the Platform way and TRICALS, which is a mix of both of the former, all face the same challenge of there being no satisfactory rating mechanism. A genuine, patient-centred step forward in trials has been the MND SMART programme which uses non-traditional centres which means people don’t have to travel miles from their home to participate.

MND and Fronto-temporal dementia

Engaging with, and listening to, family members to understand the behaviour changes of a patient, is crucial, said Dr Susanne Watkins, Consultant Neurologist at King’s, continuing the theme, in her talk about MND and Fronto-temporal dementia (FTD).

“It can be really distressing for relatives to lose the essence of someone. They’re not quite who they were, but this can be hard to identify with traditional testing, so we need to talk to relatives as they pick this up early on. The most important part of an assessment comes from the history from the patient and the family,” Dr Watkins said.

About half of MND patients who come to her MND clinic have some form of cognitive impairment, she added, while 15% develop FTD. The same proteins, genes and pathological genes are affected in both conditions.

Just as it’s important for a clinician to use the knowledge and observation of a family member to identify the condition, Dr Watkins said it’s also important to listen to families when diagnosing.

“If families don’t have concerns, then maybe it’s best not to stir things up by giving them a label.”

Building a network of MND clinics across south Wales

In a fascinating and clear overview of MND care in South Wales, Dr Idris Baker, National Clinical Lead for Palliative and End of Life Care in Wales, extended the thesis about the wider value of health professionals to MND patients and their families.

He said their role was as periscopes or warning mechanisms – using their experience to guide people on their journey. To provide this service Dr Baker and his team set about establishing a network of 12 multi-professional MND clinics across South Wales – giving most people an accessible, one-stop shop within 10-20 miles of their home and providing consistent, common standards. With appointments every three months patients can access a team of nine specialisms and benefit from that pre-emptive guidance, helping them to make difficult decisions.

In line with the programme’s objective of making life easier for patients and their families, Dr Baker said the clinics aim to minimise avoidable referrals.

Taking the fear out of choking

Choking is a common symptom for people with MND. It’s also an extremely disturbing symptom and one which has attracted very little research, according to Dorinda Moffatt an MND Specialist Practitioner at Prospect Hospice in Wiltshire.

Many years working with people with MND and experiencing her father’s choking when he had MND, inspired Dorinda to study for a Masters on the topic and to create a simple pathway for people to follow – something that hadn’t previously existed. Discovering that few fellow professionals felt confident in managing choking provided further inspiration. Reducing patient and carer distress was another major driver for her.

“Many people ask if they will choke to death. It is a really common fear, but it is extremely rare. That doesn’t mean it isn’t terrifying, because it is and they need support and reassurance. It’s so important to identify these patients and have a plan in place because every day is literally a matter of life and breath.”

Dorinda has now published evidence-based guidance and 95% of healthcare professionals to have used it say it’s improved their confidence in managing choking episodes. It’s available on the Prospect Hospice website.

Listen to the patient AND the carer

In terms of lived experience, delegates couldn’t have asked for a more honest, transparent and at times almost disarmingly pragmatic testimony from Peter Walsh and his wife Carol.

Retired motor mechanic Peter said he’d pretty much diagnosed himself following a six-week bout of flu-like symptoms when he struggled to hold his head up and developed disconcerting twitches in his limbs.

Both he and Carol emphasised the dramatic change the diagnosis has made to their lives. Both gave up work and, very rationally, set to on dealing with all the necessary practicalities from LPAs to bathroom appliances. Peter also made sure to contact St Christopher’s as soon as possible.

He’s already made some big decisions and formally expressed his wishes not to be ventilated and to die at home if possible.

“I want control of my illness rather than the illness controlling me,” Peter added. “It’s not nice but what’s the alternative?”

Peter acknowledged the huge burden on Carol and she highlighted the need for far greater recognition of this.

“We need respite care because carers become an extension of the person they’re caring for and are not having their needs met,” she said. “Someone needs to realise that carers often have disabilities of their won and need so much support. It’s a real issue for people in our position.”

NIV – “never continue with treatments that are distressing and people want to end”

With a threefold increase in the number of people having non-invasive ventilation (NIV), Dr Emma Hall, Consultant in Palliative Medicine at St Christopher’s, said health professionals need to prepare themselves with what she called the very controversial issue of withdrawal of that ventilation.

Dr Hall added: “The decision to stop can feel ethically uncomfortable but it is absolutely ethical and legal and is not assisted dying.”

She shared a case study involving a St Christopher’s patient who was being cared for at home by her wife. Having completed her outstanding life goals, the patient asked the community team to remove the NIV, as it had become tortuous. The team assessed her capacity, consulted closely with her wife and discussed with the whole MDT and GP. A week later with the patient still wanting the NIV withdrawn, the team did so gradually having commenced medications and she died peacefully 10 minutes later. Dr Hall said the wife and the team felt fully supported and comfortable ethically.

“As clinicians we should never continue with treatments that are distressing and people want to end,” she concluded.

Because MND touches practically every part of someone – practical, medical and their very personhood, the day’s final speaker, Suzana Makowski, Medical Director of Compassionate Care ALS, Massachusetts, said she always asks her patients the same thing.

“What is it that you would like me to know about you that will help me to care best for you?”

To enable patients to prepare for when things will get worse, Susana advocates for initiating what many find difficult conversations.

“People are nervous about this, but it’s like buying snow shovels in advance of winter. It’s one of the greatest gifts you can give families, helping them have their voice heard.

“If we think about a person’s life story, who they are, our role as a palliative care professional and how we can help them to construct the third act of their life then we can help to make that third act meaningful.

“What’s really important is what’s important to the person we’re looking after.”

GPNN nurses championing advancing palliative nursing

Farah Demachkieh, Senior Nurse at SANAD Hospice Lebanon and a Global Palliative Nursing Network (GPNN) Champion. Here, she reflects on their recent GPNN Champions meeting with Heather Richardson, Director of Academic Learning and Action at St Christopher’s Hospice.

A few weeks ago 16 nurses met together virtually to think about advancing palliative nursing and the place of being a leader in that endeavour.

By definition the group that met are working to become “champions” – proponents for the value of nursing; ambassadors for our colleagues doing great work in palliative care and change agents in relation to the impact that palliative nursing can have for people dying or bereaved.

In specific terms, we are working together to champion the new Global Palliative Nursing Network that brings nurses together around the world to advance palliative nursing.

Stronger leaders

We wanted to be inspired to be stronger leaders- through the work of others on the call and nurses that have influenced us. 

When we think personally about our ambitions to be the best nurse that we can be, these aspirations have often been most influenced by observing or studying the work of nursing colleagues – people whose impact on patient care is clear; individuals who can enthuse and inspire teams of people around them; leaders who bring energy and vision to an often tired and dispirited group; leaders who uphold nurses position, role, voices and demands. 

Individually and together we have been shaped and motivated by nurse leaders throughout our careers and also by reading about the lives and work of nurse giants – Mary Seacole, Cicely Saunders, Florence Nightingale to name a few.

Recently, on Waterloo station in London, GPNN facilitator and Director of Academic Learning and Action at St Christopher’s, Heather Richardson read a poem by Professor Laura Serrant, a nurse who had come over to the UK in the Windrush Movement, entitled “You called and we came”. Her commitment to achieving a vision of “health for all” and the personal upheaval she endured to do so is both moving and inspiring. She is a nurse leader of gigantic proportions with real influence, and Heather is keen to be more like her.

Transformational leadership

Our time together as “champions” has been very helpful in this regard. When we met last month we explored the American model of transformational leadership – focused on actions and behaviours to create then help others achieve a shared vision. It encourages modelling, enabling and encouraging as well as challenging processes that are unhelpful.

We looked through its perspectives at some of the shared characteristics of nurses Cicely Saunders and Florence Nightingale, articulated by Marie Cooper and Heather Richardson some years ago. There is strong resonance – a visionary leader and protagonist for excellent care amongst others.

Then we talked together about areas for collective and personal growth to become stronger leaders – achieving change and impact at local, regional and global levels. Recalling that event, thoughts that seemed to resonate the most are:

  1. How many leaders already exist in our membership; yet individuals often don’t see themselves as such. We owe it to each other to notice and articulate others’ leadership qualities so that they can refine and leverage them to better achieve their goals
  2. How supportive the network is as people grapple with personal and professional reflections of frustration when they can’t achieve the leadership potential they have or could bring to the challenges they face
  3. How valuable models such as that of “transformational leadership” are. We hope fellow champions will reflect on where they want to hone their skills then seek out help from the network (mentoring, coaching, formal learning) to become even more effective
  4. How important it is to model to fellow nurses how they can transform the death course; as the life course, of patients and their families and give them a sacred opportunity to a dignified goodbye, a goodbye that patients would want to experience, a goodbye that caregivers would want to cherish and remember and a goodbye that nurses would want to feel proud of. We both frequently encounter nurses who do not understand the extent to which they can contribute to improving people’s end of life moments because they have never seen how it can be done differently; instead they are very focused on saving lives. It is our role as champions not only to talk but also to model what palliative nursing is about.
  5. How “encouraging the heart” as one element of the transformational leadership model lies at the heart of palliative nursing that is driven by compassion. This reinforces the leadership attributes that are inherent to palliative nursing, often echoed by the champion nurses.
  6. How challenging the nursing process and advocating for and adopting “a public health narrative” could serve as a crucial act to advance palliative care. Nurses are very, rightfully, attached to the patient-staff narrative; however, in palliative care communities play a fundamental role in end-of-life care and as such nurses have the opportunity to empower communities to reclaim their unique role in supporting dying patients and bereaved family members.

We believe that the champions group and the wider nursing network creates a safe space for all the champions “to be” and to reflect on different attributes that they can hone, including leadership ones thereby helping enhance palliative nursing and fellow nurses.

Thank you all for your contribution.

Farah Demachkieh

Creative connections made at a conference

The impact and importance of creative arts as part of a holistic approach to treating what Dame Cicely Saunders described as Total Pain, was high on the agenda as delegates were treated to inspiring presentations full of real-life case studies demonstrating the effectiveness of several different approaches.

There were several recurring and strong themes for delegates to latch on to and to take back to their workplace, including the importance of creating a safe place for people to express themselves, even if that can take many different forms, the need to focus on what matters most to people rather than what the matter is with them, using creative arts to make a connection with people, the power of the metaphor and, last but not least, ensuring that as a professional working in palliative care you’re equipped to deal with the inevitable ‘tsunami of pain and suffering’ that comes with the job.

Mandy Bruce, Psychological and Spiritual Care team lead at St Christopher’s, opened the conference spelling out its intention; to give people a better understanding of the various ways of using creativity in palliative care to honour the patient experience.

She said that by understanding and treating, in the widest possible sense, people’s physical, psychological, spiritual and social pain, a multidisciplinary team can provide the right support at the right time.

“It’s human nature to resist pain and to try and push it away. We’re not trying to fix it but help them to turn towards it and create a space in which they can face it,” added Mandy.

“Creative therapies provide a safe and secure therapeutic space to explore what works, warts and all. We reach into pain and suffering in a way beyond words.”

Mandy and her colleague music therapist Sean Kenny shared four case studies illustrating the effectiveness of giving people a chance to experience what it means to be mortal. These included a A retired military man, bashful about his creative capabilities, who made an armadillo out of clay with a thick outer shell and a crumbling interior, an apt metaphor for how he felt. There was also a middle-aged man struggling with unresolved grief following his mother’s death and challenged by his own terminal diagnosis was helped to process his grief and pain and come to terms with own impending death through music, singing songs he sang with his mother and then recording a CD for each of his children.

Picking up on the theme of the safe and secure space, Art psychotherapist Deborah Kelly described the success of Groups in Nature, a weekly group she set up in the woods in Sussex.

Nature, Deborah said, provides a supportive and creative space for people. Just being in nature helps our mental and physical wellbeing and we’re hard-wired to love open spaces. And by witnessing the changing of the seasons we can reflect on the cycle of life and come to terms with the fact that we’re part of something much bigger than ourselves. People reported that it gave them a sense of belonging, relieved loneliness and helped them to understand where they would like to be cared for and to die.

Linsey Clark, Dance Movement Psychotherapist who works at Weston Hospice Care in Weston-Super-Mare, talked about a very different but equally secure, safe place for people to come together and express themselves – in a closed room in the hospice. In her talk: When the door is shut, we shut everything out, she shared the work she does introducing patients from the hospice to dance.

Everyone in the room has something significant in common, they can take comfort from it but don’t need to say it. Being together in a room with the door shut provides a further security – allowing them, Linsey says, to feel no limitations, to push boundaries, readying themselves for the unknown. She added that while she can’t change’s people’s outcomes or take their pain away, she can help change their experience of that pain.

Drama therapist Peter Darby-Knight highlighted the power of stories in the palliative care setting, in his talk, Once upon a time. With every example of the impact stories can have on people, he came back to the same powerful point – connection. Whether it’s the 4,000-year-old tale of Beauty and the Beast or the cowboy films featuring stoic, granite-jawed heroes like John Wayne and Clint Eastwood that his father so admired, we all find our own connection in stories.

Peter illustrated this with the story of a teenage boy struggling to come to terms with his mother’s terminal diagnosis and who was very reluctant to engage with him. They made a connection over a shared love of Star Wars and soon the boy had written a script full of emotion and grief, expressing his feeling in a way he most likely wouldn’t have without that connection with the story.

Sculptor Lisa Snook focused on connections too. She works with both bronze and clay and says that sculpture is something we feel, that connects to the body as we push and pull the clay. For her, she says, contact with the clay is like a form of meditation aided by the 17,000 touch receptors in our hands.

When clients come to her, Lisa says, they’re often stuck, but touching the clay can help them change that, to make sense of the world.

Find a safe, secure place is as important for professionals working in palliative care as it is for the people they work with, stressed Michael Kearney, who recently retired after more than 40 years working as a doctor in palliative care, starting out at St Christopher’s in the late 1970s.

Most of Michael’s presentation, delivered via video link from his home in California, was aimed at the health and social professionals in the room and designed to provide them with some tools to cope with the pandemic of burnout to which everyone is vulnerable, he said.

Deep security provides people with the resilience to stave off burnout’s three main symptoms; overwhelming exhaustion, depersonalisation and low personal accomplishment.

Take away that sense of deep security and, Michael said, we find a lot of unhappy people walking around with protected hearts, cut off from creativity.

Michael did offer some pathways back to security and that all-important resilience – all based around different models of self-care to help you live better with the tsunami of pain and suffering you come across. He used the metaphor of water to describe three ways of coping – traditional self-care which is like holding your breath under water and then come up for air. The second type is self-awareness self-care which is like breathing underwater. While the third approach, which came to Michael on a walk in his favourite Californian woods, involves letting the water, or experience, flow through you.

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