In New York, a city far removed from armed conflict yet where high numbers of people have suffered cruel symptoms and died isolated from loved ones, the importance of palliative care– the holistic support and comfort of the seriously ill and dying and their families – has lurched into the spotlight. The pandemic has also illuminated aspects of a ‘good death’ which have been made impossible by this disease in efforts to avoid transmission – the ability to accompany a dying relative, to hold their hand or brush their cheek, to grieve in the company of friends at a funeral. Instead, it is a sobering and inescapable reality that many people have and will continue to face severe symptoms and die from COVID-19, often alone or deprived of human touch – the ‘very opposite’ of a ‘good death’.
People trained in palliative care have an essential role to play in COVID-19 response in minimizing suffering of the very ill or dying and their families: offering pain and symptom management; supporting spiritual and emotional distress; walking beside colleagues confronted with challenging decision-making; and using innovative approaches to communicate with, accompany, and be present with dying patients and their carers.
Before COVID-19, palliative care was very slowly gaining recognition as an important part of the healthcare continuum alongside life-saving treatment in humanitarian response, at least amongst palliative care practitioners and advocates. And yet, the pandemic response for people already made vulnerable by humanitarian crisis does not appear to be programming for how the suffering of the dying can be eased.
In places affected by conflict and humanitarian crises, wrote surgeon and humanitarian David Nott in May, “There is no piped oxygen, electrical power cuts are common, and the health workforce capacity is unlikely to be enough to deal with even a small number of COVID-19 cases, never mind the potential of thousands of deaths from this disease.” The need for palliative care to alleviate suffering of the very ill and dying in humanitarian crises should be self-evident in such a setting. Unfortunately, it doesn’t yet seem to be.
Key challenges for palliative care in humanitarian crises
Why isn’t palliative care more squarely on the radar of humanitarian agencies? We know from the small amount of (pre-COVID-19) research available that challenges to the integration of palliative care in humanitarian response tend to focus around four key areas:
Saving lives at all cost. Palliative care tends to be beyond the convention of modern humanitarian practice. There is a bias towards curative medicine, with a focus on saving lives. This is propped up by global health metrics – for example, mortality rates or numbers of lives saved.
Health resource scarcity. The limits of material and human resources are major impediments. How do you successfully argue for the provision of pain management for a dying person, for example, when even the basics of survival such as food, water and shelter may be hard to come by? These moral challenges of prioritization are extremely painful in a context where resources are limited.
Insufficient awareness, guidelines and education. Even where support is expressed for incorporating palliative care into humanitarian response, there are a lack of policies, guidelines and training to support humanitarian actors to do so.
Cultural and contextual diversity. Finally, palliative care must consider cultural values and differences. Diversity in values of illness, death and dying are a challenge for the implementation of palliative care. Existing interventions have been developed within a Western frame and may not transfer easily into humanitarian settings.
COVID-19: a catalyst for change?
Could COVID-19 be the goad for getting palliative care recognized as critical in existing humanitarian crises? Possibly. But if history is anything to go by, there’s a long road ahead to make that happen.
In 2017, guidelines for supportive care of people diagnosed with the Ebola virus, a disease with horrific symptoms and an exceptionally high mortality rate (around 50 per cent), and which also brought with it the impossibility of a ‘good death’ or ‘normal’ opportunities for families to grieve, did not acknowledge the value of palliative care. A 2018 systematic review describes a paucity of data and reference to palliative care as part of humanitarian healthcare response.
Things are shifting slowly, particularly in the development of guidelines and protocols, the area where palliative care experts have been most focused. In 2018, the World Health Organization released a guide on ‘Integrating palliative care and symptom relief into the response to humanitarian emergencies and crises’. This was a milestone for encouraging the take-up of palliative care in humanitarian settings. That same year, palliative care was included in the Sphere Handbook for humanitarian standards for the first time.
And yet, there is little evidence of application of these guidelines across humanitarian settings, including in responses to COVID-19. In early April, the Lancet drew attention to the World Health Organization’s oversight for failing to include palliative care in the COVID-19 operational guidance for maintaining essential health services during an outbreak. Positively, this has since been updated in the revised guidance. The UN Office for the Coordination of Humanitarian Affairs’ Global COVID-19 Response Plan still does not include palliative care in its strategic priorities alongside health mitigation and case management measures, nor do any of its country humanitarian response plans. From regional epidemic to global pandemic, we unfortunately haven’t come too far.
A few weeks ago, I participated in a global webinar on palliative care in humanitarian crises amidst COVID-19, co-hosted by four respected international palliative care networks. I suggested a quick survey of participants on the webinar – asking for a show of digital ‘hands’ from who in the audience would affiliate themselves primarily with the humanitarian sector or a humanitarian agency. There were no responses. Whilst a rudimentary assessment at best, and taking into account the sudden glut of webinars, meeting clashes and ‘zoom fatigue’ we are all experiencing, the lack of ‘hands’ was nevertheless disappointing. It was also not surprising.
The palliative care sector may be devoted to developing necessary guidelines and proposing essential packages of clinical care for humanitarian settings, but these will be of little use if humanitarian agencies are not actively incorporating palliative care into their practice. For the most dire humanitarian contexts, the suggestion of essential packages of palliative care, whilst immensely important, won’t be sufficient. The limits of resources remain a significant challenge; guidelines won’t necessarily help to shift a mentality focused on saving lives; and they do not on their own cover all aspects of human suffering in illness and dying which are both individually and culturally conceived.
Currently, the vision for palliative care in humanitarian settings is falling short.
Expanding our vision: three big ideas
As I wrote in a 2019 paper, “Palliative care and humanitarian action share fundamental goals to relieve suffering and uphold dignity; and both hold an ethical root in the recognition of our common suffering in illness and dying, our compassionate action in response to suffering, and our common humanity”. With these shared values in mind, here are three ideas the palliative care and humanitarian sectors need to consider together.
First, we need an open and honest ethical debate and we need to practice humility.
We need an honest and open debate on the ethics of palliative care delivery in humanitarian crises. This may be a surprising starting point, but one I think that is perhaps most fundamental for solving some of the biggest challenges. If we are focusing too intently on bringing the best clinical palliative care to every suffering individual, we miss crucial moral dilemmas for supporting whole populations in resource scarcity: how to prioritize limited resources; who to prioritize; and how to support healthcare workers who may be experiencing moral distress in caring for dying patients. These ethical dilemmas are the focus of a new paper in the Journal of Medical Ethics. Even in the COVID-19 response in Spain, a country with a functioning palliative care system, palliative care doctors and nurses have been deployed to deliver emergency care to those infected amidst severe resource constraints, resulting in the limited provision of palliative care.
We need to open this debate in order to overcome such dilemmas. We need to acknowledge that in most settings where humanitarians are working, healthcare systems are weak and fragile. In the world of COVID-19, many health systems may be about to collapse altogether.
We also need greater humility to acknowledge that there will still be suffering in humanitarian contexts we cannot mend, no matter how comprehensive our efforts.
Second, we need to come to an acceptance of death and the importance of compassionate care.
Humanitarian agencies and actors at all levels, from the strategic and operational down to the intimate level of service delivery, need to remember the fundamental principle of humanity and its aim to not just save lives, but to alleviate suffering. Compassionate comfort and care for the dying is steeped in humanitarian history and ethics, but today sometimes, humanitarian agencies can bring a certain ego and ‘save the world’ mentality to emergency response.
This can be true for health workers in many parts of the world, where medicine’s obsession with curative treatment has relegated historic efforts to relieve all manifestations of suffering in illness and death. In the COVID-19 pandemic, the conversation even in existing humanitarian crises continues to focus on how many expensive artificial ventilators a country has and how many ICU beds can be quickly set up in field hospitals to treat people with the disease. We often strive to keep people with severe illnesses alive, even when such invasive treatments may be futile for the sickest patients or unwelcome by those who wish to forgo medical interventions and to die in comfort dignity and peace; or unavailable in contexts where basic pain relief or electricity to run such equipment may be hard to come by.
Logical action means accepting that death is not a failure or an enemy to be fought and defeated at all costs. Palliative care, not just survival through aggressive treatment, should be the aim for the sickest and suffering patients whose lives cannot be saved because the treatments don’t exist or are not appropriate, or the resources are not available.
A humane response to suffering gives rise to compassion. Alongside essential packages of clinical care, we need to tap into the softer approaches of witnessing, sitting and caring, of taking a moment to feel pain alongside someone or to comfort a colleague. We need to think about these small but potent compassionate acts of palliative care that can be enacted no matter how scarce the resources, and in doing so remind us of the roots of humanitarian action.
Third, we need to work in solidarity with communities and volunteers.
We need to think about who the real humanitarians are and ensure they are central to efforts to integrate palliative care. The world of neighbours, relatives and strangers who play a central role in responding to any crisis. Most humanitarians are volunteers. Humanitarian and author Hugo Slim has observed in his book on Humanitarian Ethics, “At any moment, in any day, somewhere in the world a person is suffering from the violence of armed conflict or the devastation of disaster. As surely as this person is suffering, it is equally certain that someone will be trying to help them.”
In COVID-19, many of us have discovered wide-eyed what it means to reach out to our vulnerable neighbours we may never have spoken with before and to feel connected as a whole community. In richer countries, the compassionate community network recognizes the role of citizens to respond with care when faced with dying and grief and exists as formalised local networks to support such efforts.
Many communities already enduring humanitarian crisis can teach us much about voluntary caring for those who are suffering or dying. We have to harness the power of communities and volunteer networks to provide comfort and presence to those who are suffering and to provide vital support to families left behind. Local humanitarians may not be familiar with formal palliative care or a strong palliative care culture. But even where there is no existing formal palliative care, we need to look for what is already there organically in the community and build on it. We also have to do away with colonial or paternalistic attitudes to the implementation of what has developed as a Western model of palliative care. We need greater plurality, recognizing that more than one path exists. We need to ensure we are tapping into cultural values and traditions of illness, death, dying and bereavement.
Leadership in COVID-19
For communities all around the world, COVID-19 has urged us to contemplate our mortality and our humanity – a blunt reminder that human lives are precious and that relationships must be treasured. COVID-19 presents an opportunity for humanitarian agencies to more fully comprehend the importance of palliative care in their work, but this won’t happen unless we are more open and honest about the discussion we need to be having.
Realizing compassionate palliative care in humanitarian crises will take more than the development and implementation of global guidelines. We need a vision for palliative care that is both ambitious, but also honest and humble, and in the first instance, meets communities where they are at. This is our duty as a palliative care sector to be promoting.
For humanitarian agencies, the occasion that COVID-19 does offer immediately is a time to bear witness, to listen, to capture and document stories of suffering and stories of caring for future efforts. And as I wrote in a recent blog, “the opportunity has never been clearer, nor more essential, to provide leadership in the art of caring in dying and death. When COVID-19 has abated and humanitarian agencies begin to evaluate their efforts, their credibility and relevance can only be boosted through such a service”.
- Call by global leaders: work together now to stop cyberattacks on the healthcare sector, May 26, 2020
- Marco Sassòli, Joint Blog Series: Medical care in armed conflict PART I, January 24, 2019
- Marco Sassòli, Joint Blog Series: Medical care in armed conflict PART II, January 24, 2019