Author Archives: nvah3

Controlled medicines in end-of-life care must be included in the Pandemic Accord

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In common with other natural disasters, pandemics increase demand on healthcare, including the care of people who are dying. Opioids and benzodiazepines are effective medicines for palliating symptoms at the end of life and it is our moral responsibility to ensure everyone has access to them.

In 1961 the world formally recognised that controlled substances such as opioids and benzodiazepines (often referred to as narcotic drugs) are “indispensable for the relief of pain and suffering”. Almost all UN Member States adopted The Single Convention on Narcotic Drugs, calling for adequate provision and availability of controlled substances for medical and scientific purposes. Over sixty years later and more than 80% of people in the world who need these medicines still cannot access them.

COVID has become another factor perpetuating unnecessary suffering and lost dignity at a time of greatest need.

Sadly, lack of access to controlled medicines was “usual state” at the start of the pandemic, a terrible situation to be in when faced with a pathogen that caused millions to die of acute respiratory distress syndrome, characterised by breathlessness and often agitation (Keeley et al, 2020). These distressing symptoms can be effectively managed at the end-of-life with opioids and/ or benzodiazepines (National Institute for Health and Care Excellence, 2023). This accepted, evidence-based practice was swiftly published into guidelines early in the pandemic but guidance is meaningless if the medicines recommended are unavailable. Controlled medicines have merely been added to the list of stockpile and supply-chain issues, along with PPE, vaccines, equipment, ventilators, hospital beds and an appropriately trained workforce.

… healthcare services, governments and humanitarian agencies must take a coordinated approach to implementing effective disaster planning and having adequate supplies to anticipate shortages of human and medical resources, to ensure universal access to effective end-of-life care can be realised.

END-OF-LIFE CARE IN NATURAL DISASTERS INCLUDING EPIDEMICS AND PANDEMICS: A SYSTEMATIC REVIEW, Kelly et al 2023

This is deplorable in a world which has agreed to do better.

The Sphere group of humanitarian, non-governmental organizations explicitly acknowledges the right to basic conditions for life with dignity in their Humanitarian Charter and WHO guidance Integrating palliative care and symptom relief into the response to humanitarian emergencies and crises dedicates a chapter to the Essential Pack of Palliative Care (EP Hum), recommending medicines including morphine and diazepam. And yet, as of March 2023, palliative and end-of-life care does not appear in the text of the Zero Draft of the WHO CA+ on pandemic prevention, preparedness and response. Furthermore, there are more references to the development of new medicines in this document than making existing, evidence-based and effective ones available (3 vs 1 respectively).

Even in countries with good access to controlled medicines and palliative care, many patients dying with COVID have not felt their benefit.

People with life-threatening and chronic disease, due to their particular needs, should be included in the design of policies and plans to manage their risks before, during and after disasters, including having access to life-saving services.

sendai framework for disaster risk reduction 2015-2030,
UN office for disaster risk reduction

Despite clear guidelines and supporting policy, one multi-centre study in the UK found that opioids and/ or benzodiazepines were administered to palliate fewer than one third of breathlessness episodes in the terminal phase of COVID (Reid et al, 2021). How can this be? Local and national policy changed rapidly in the face emerging data about COVID. Staff were redeployed at short notice to unfamiliar settings, procedures altered and temporary legislation introduced – all factors relevant to prescribing, dispensing and administration of controlled medicines.

The experience of palliative care in humanitarian and emergency situations attests that none of the above is unexpected. Anticipating the inevitable increase in demand for controlled medicines in response to health emergencies is essential, as is preparing staff for the challenges they may face.

The Pandemic Accord affords the world an unmissable opportunity to finally make good the promise of the Single Convention on Narcotic Drugs agreed in 1961 and to learn lessons from all the health emergencies – including the COVID pandemic – that have gone before.

Palliative Care: The hidden essential for Pandemic Prevention, Preparedness and Response

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In December 2021, the World Health Assembly established an intergovernmental negotiating body (INB) to draft and negotiate a Pandemic Accord or Treaty to strengthen pandemic prevention, preparedness and response (PPR). This is a global and united opportunity to proactively plan and resource palliative care services before (rather than in response to) the next pandemic or health emergency.

Sadly, the latest version of this instrument, the Zero Draft (March 2023), makes no reference to palliative care at all although it appears this is not an isolated occurrence, as noted by the recently-published report in COVID-19 from the UK’s All Party Parliamentary Group (APPG) on Hospice and End of Life Care.

This is despite CovPall, a large, multinational survey, demonstrating a surge in demand for palliative care services in hospital and community settings globally.

Death dominated the news throughout the pandemic but the significant impact of COVID-19 on palliative and end of life care has gone largely unnoticed.

The Lasting Impact of COVID-19 on Death, Dying and Bereavement, 2023

This week I delivered a statement to the fourth session of the INB on behalf of the International Association for Hospice and Palliative Care, the Worldwide Hospice and Palliative Care Alliance, International Children’s Palliative Care Network and Palliative Care in Humanitarian Aid Situations and Emergencies (see video below).

Watch out for blog posts from me about palliative care in pandemic PPR, read more about our work to include palliative care in the Pandemic Accord/ Treaty and add your endorsement to our advocacy note.

Education for sustainable development: mapping the terrain

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The UN Sustainable Development Goals (UNSDGs) are talked about a lot, and there’s a real buzz around Education for Sustainable Development , or ESD. The Higher Education Academy defines it as an interdisciplinary pedagogical approach “to contribute to an environmentally and ethically responsible society”, reflecting the origins of the concept of sustainable development in the climate change movement.

The current 2030 Agenda for Sustainable Development embraces the complexity of environmental and societal issues today. None of the 17 goals are more important than the others and none exist in isolation, yet all are underpinned by universal values. These values (which I intend to explore in more detail in future posts) and goals focus action on people, the planet and prosperity.

The oncology and palliative care educational programmes that I lead take the “people” perspective of the UNSDGs. After 10 years and 2 major change procedures, I can confidently say that my knowledge of our programme curriculum was better than my understanding of the UNSGDs, but I was determined to get a handle on this thing they called ESD. Did it even apply to my courses and if so, what did it mean?

I began by mapping our curriculum against each goal and its associated targets, using Trello. I noted learning activities and outcomes which matched each goal and identified gaps and potential opportunities. Not unexpectedly, Goal 3: Good Health and Wellbeing predominates our programme and here are some examples:

  • Target 3.4 to reduce premature mortality from NCDs is one of our key aims, through education on cancer screening, early detection and treatment. I didn’t, however, appreciate that this target also includes the promotion of mental health and well-being, which is covered in our module “Psychosocial Issues in Advanced Disease“.
  • Target 3.8 on Universal Health Coverage is very important to us, as we have the honour of having many students join us from developing countries and it features heavily in several of our modules.

This wasn’t an exercise in ticking boxes or joining dots. The UNSDGs have allowed me to reframe our programme and consider, from different perspectives, what and how we teach. For instance, it was evident that our educational offerings failed to consider the need for clean water and sanitation in the care of people with cancer and advanced disease (Goal 6) and did not explicitly include the impact of harmful gender practices on the management of female cancers (Goal 5, target 3). Thanks to the UNSD framework I have a message to take to colleagues working in these fields for future collaborations

I love the UNSDGs and wear its pin enthusiastically now. I love the clarity they give to complexity and their inherently collaborative intent, enabling us to work on different enterprises with shared intent. I love how they just make sense, a commodity not always in great supply, and how they provoke us to challenge assumptions and see the world differently. I love these 17 goals and, after reading this post, I hope you will too.

Advocacy and policy foundations in action at WHO Europe

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Within weeks of completing the Newcastle University Policy Academy‘s foundation workshops, an email landed in my inbox too sweet and too timely to ignore. “Advocacy opportunity!” the International Association for Hospice and Palliative Care (IAHPC), of which I am a member, shouted. IAHPC is a global, not-for-profit organization dedicated to increasing access to and optimizing the practice of palliative care and the invitation was to represent them at the 72nd session of WHO Europe in Tel Aviv. In this post I will share my experiences of this baptism of fire for the benefit of anyone else who aspires to advocate and/ or shape policy on a global scale.

My desire to advocate for universal access to palliative care services and essential medicines comes directly from teaching Newcastle University’s online MSc Palliative Care. Here my students share stories from the patient bedside that testify of global inequality, despite the fact that palliative care is a recognised part of universal health coverage. Advocacy – the support of a particular cause or policy – runs hand-in-hand with education, research and, of course, policymaking. This was my chance to put learning into action.

My first piece of advice is prepared to put in a lot of hard work. Weeks before the event you will review provisional agenda items and associated documents for relevance to the cause you are advocating for. In our case the agenda items related to palliative care for persons with disabilities, non-communicable disease and cervical cancer. Katherine Pettus, IAHPC’s senior advocacy officer, and I drafted statements in response to these documents, respectfully yet forcefully making our point. Good academic writing skills are invaluable here as you reference legislation and research to present compelling, evidence-based arguments within a set word-limit. These written statements – and sometimes video recordings – were uploaded to the WHO Europe website, but first we had to garner support.

The IAHPC is a Non-State Actor in Official Relations with the WHO (NSA for short) and, as such has the opportunity to make oral statements (“take the floor”) at the event after member states have made their responses to agenda items under discussion. This isn’t a to-and-fro discussion – it’s a precisely orchestrated dance of procedure and protocol, following a predefined hierarchy and conforming to rules. NSAs must join forces to be heard and that means endorsement. In the weeks leading up to the event, written statements are circulated around the NSAs for endorsement, a process involving feedback (an opportunity to get your message before policymakers), amendment and logo-sharing. Statements were landing in my email inbox at a bewildering rate that was challenging to keep on top of, but this proved to be a good way to network prior to arriving in Tel Aviv.

The most important connection you must make before big international events such as WHO regional sessions, Conferences of the Parties (COP) or meetings of UN committees, is with your country’s official delegation (ministers, civil servants and/ or chief medical, nursing or scientific officers). This was easier said than done in the middle of a prime ministerial hand-over and following the death of a monarch. Even emails to an ally in the House of Lords bore no fruit but if all else fails, you can strike up a conversation on the airport transport or at a 6am Pilates session (yes, we did this).

In the run-up to the session an experienced colleague gave me two excellent pieces of advice: keep on message and find the free coffee. Both proved invaluable. I met some great people and I learnt a lot about the future direction of healthcare in Europe and about myself. Our efforts resulted in small changes – the addition of a few words to policy-informing documents – but the impact could be huge. Sixty five percent of people in Europe currently have no access to palliative care. Perhaps my baptism of fire will make it accessible to more people and that is why, after feeling exhausted (hence the coffee) and often out of my depth, I will definitely do it again.

Read the IAHPC’s draft statement, written by Dr Victoria Hewitt and Dr Katherine Pettus in response to “The WHO European framework for action to achieve the highest attainable standard of health for persons with disabilities 2022–2030” by clicking on this link

Leave no one behind

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I began my career as a doctor in the British Army. During basic training with other doctors, nurses, pharmacists, lawyers and chaplains, we were presented with the following hypothetical scenario to discuss:

Your field ambulance station is about to be over-run by the enemy. Your medics have evacuated everyone they could – staff, mobile casualties and patients who were fit enough to transfer by ambulance to safety. One patient remains – severely unstable and unlikely to survive being moved from the station. Do you stay with the casualty, who may not survive, or do you leave them and go with the patients being evacuated?

We all chose the latter, arguing that our precious skills could achieve maximum good for the greatest number. In effect, we were prepared to sacrifice the most sick and vulnerable individual who needed us most for the greater number who needed us least. I remember how ashamed I felt when this was reflected back to us, as we were reminded that this level of courage explains the 29 Victoria Crosses (2 with bar) awarded to medical personnel.

This is the principle of non-abandonment upon which palliative care is founded.

“… no matter how poor the patient’s condition is, something can be done, and the skills of palliative care can and should be applied.” (Sheahan and Brennan, 2020).

Leave No One Behind (LNOB) is the second principle underpinning the universal values of the UN Sustainable Development Goals. It is a commitment to eradicate poverty, reduce inequalities and end exclusion, explicitly acknowledging that discrimination causes people to be left behind. People living with serious health-related suffering experience discrimination when they are denied access to palliative care and they are being left behind at their moment of greatest need. But simply recognising palliative care as part of Universal Health Coverage isn’t enough. We need to make palliative care services available and challenge our assumptions. Even where palliative care is available, patients and their families can feel abandoned when they are left with the sense that nothing further could be done and professionals “surrender into nihilism” that Sheahan and Brennan urge against.

Discrimination in palliative care goes deeper than organisational structures, services and competencies. These are the manifestations of assumptions and beliefs which we need to challenge, however uncomfortable that makes us feel. We must have courage and we must have compassion if we are to make real the powerful message from Dame Cicely Saunders, founder of the modern hospice movement:

‘You matter because you are you, and you matter to the end of your life.
We will do all we can not only to help you die peacefully, but also to live until you die.’

You can read more about the consensus definition of palliative care and add your endorsement here: Palliative Care Definition

Advocating for palliative care in an uncertain world

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This month I began my journey into advocacy for real with something of a baptism of fire by representing the International Association for Hospice and Palliative Care at the 72nd session of the World Health Organization Regional Committee for Europe in Tel Aviv. As I type this I’m following the 77th Session of the United Nations General Assembly where, as was the case in Tel Aviv, the war in Ukraine is front and centre of the debate. But it isn’t the only threat to our health and safety – climate change, pollutants, covid, monkey pox and polio virus, not to mention factors influencing our lifestyle choices are impacting millions of people worldwide.

Where then does palliative care feature in the narrative? How can we give it a voice amongst the actual and imminent crises that we face, when so many people in the world don’t have access to it? Even in Europe, where10 of the 20 top-performing countries for palliative care are located (Finkelstein et al, 2021) 65% of the population of the region did not have access to these services in 2019 (WHO, 2022). At the Europe Region session, the prevailing narrative was one of cure and, if not cure, then prevention and extending life expectancy. How can palliative care step into this frame of “leave no one behind” when the people we care for for are, de facto, the sickest?

The consensus definition of palliative care goes a long way to addressing this:

Palliative care is the active holistic care of individuals across all ages with serious health-related suffering due to severe illness and especially of those near the end of life. It aims to improve the quality of life of patients, their families and their caregivers. (Radbruch et al, 2020)

In this definition, suffering is health-related when it is associated with illness or injury of any kind and it is considered serious when it cannot be relieved without professional intervention and when it compromises physical, social, spiritual, and/ OR emotional functioning. This applies to patients and their care-givers and as such it is a conceptual model that facilitates the inclusion of palliative care in health-related policy at many levels. Furthermore, it aligns to the life course approach to physical and mental health, which cannot ignore that death and dying are a normal part of the human condition.

At the WHO Europe Session, the Regional Director, Dr Hans Henri Kluge, talked of the post-covid “new normal” of health care being dual track, with emergency preparedness running alongside the prevention and control of non-communicable diseases. Palliative care is one of the few disciplines which can operate with the same core principles along and across both tracks simultaneously. With over 2 million deaths in Europe and counting Covid-19 showed us that we need to manage dying well, and in an ageing population (Europe’s is ageing faster than anywhere else in the world) multiple co-morbidities will, eventually, converge in palliative care. The aim is always to alleviate serious health-related suffering.

Palliative care is an essential. It is not a place to refer to solely when curative treatment has failed or when someone is not ageing in a way which is considered “healthy”. It’s role extends beyond the label of “best supportive care”. Despite it’s etymological roots (palliare = to cloak), palliative care must step into the light and gain it’s rightful recognition in war zones, disaster zones, hospitals, homes and communities.

Education to advocacy

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For the past decade I have been teaching palliative care to professional colleagues from all over the world in an online MSc programme at Newcastle University. Our programme has always been online – quite revolutionary 15 years ago and certainly before covid entered our lives – so we have always benefitted from contributions from international students. Soon after I began teaching the Pain Management module, I realised that the prevalent UK-centric approach simply wasn’t appropriate when so many of my students simply didn’t have access to medicines and services which we consider essential to good palliative care.

The answer was to adopt learning designs that were participatory and socially-constructed, situated in meaningful clinical contexts and incorporating virtual spaces to share stories and learn from each other. In these spaces I heard stories about palliative care across the globe: some challenges we have in common, some illustrated the disparity between high- and low-income countries. Every narrative, however, seemed to be underpinned by a desire to do better.

The majority of our students come to us with the aim of professional development, many following good or bad experiences of palliative care. As they progress through the programme, I often notice a shift away from individual development to a desire to change the system within which they, as clinicians, operate. Reflecting on this has allowed me to appreciate that as educators, we have an opportunity to equip our students – doctors, nurses, pharmacists, paramedics, occupational therapists, psychologists and other members of the healthcare community – with the knowledge and skills to become palliative care advocates in their own corners of the world.

To do that, I had to learn about advocacy myself and in my next post I will describe what I’ve been doing to achieve this.