Emilie Couchman is an NIHR Clinical Lecturer in General Practice with the Division of Primary Care, Palliative Care and Preventive Medicine at the University of Leeds, and a salaried GP in Wiltshire.
Palliative care is built on values that matter deeply to general practice: dignity, continuity, presence, and the relief of suffering. Yet clinicians across primary and specialist settings are increasingly describing a double burden – moral distress and mortal distress – that is reshaping not only their own wellbeing but the culture and quality of care.
…clinicians are not navigating ethical constraints or mortality-related strain in isolation, but a compounded experience in which each intensifies the other.
This emerging landscape calls for a term that captures the fusion of these two forces. Ethico Existential Distress describes the combined impact of being unable to act in accordance with one’s professional and moral commitments while simultaneously carrying the emotional and existential weight of working in constant proximity to death. It reflects the reality that clinicians are not navigating ethical constraints or mortality-related strain in isolation, but a compounded experience in which each intensifies the other. Ethico Existential Distress therefore offers a more accurate and honest account of the pressures shaping contemporary palliative care, and the systems in which it is delivered.
Mortal distress has recently been defined more clearly in the literature, “built on concepts of fear of death and death anxiety… describing the phenomenon of reacting to death and dying, encompassing a range of emotional, cognitive, physical and behavioural responses that individuals may experience when confronted with mortality.”¹ The COVID 19 pandemic intensified this further, with a surge of studies documenting heightened death anxiety and existential strain among healthcare staff.² Moral distress, by contrast, arises when clinicians know what good care looks like but are unable to deliver it because of structural constraints: workforce shortages, fragmented continuity, time pressure, or organisational priorities that conflict with patient needs.3,4
Ethico Existential Distress captures how these forces accumulate and amplify one another. It describes a dual injury: a wound to one’s ethical core and a wound to one’s human core. Together, these pressures create a shared wound, ethical and existential, that reshapes how teams function and how care is delivered. Clinicians begin to withdraw from the relational work that defines palliative care. Teams become less able to hold complexity together. The culture shifts from compassionate to transactional, from reflective to defensive.
The impact of delivering care in an inequitable system compounds this further. Professionals describe significant moral distress when faced with service gaps, regional inequity, and an inability to facilitate patient or family choice; particularly when they know what good care should look like but cannot provide it.3,4 In paediatric palliative care, clinicians spoke of the personal distress caused by regional disparities in specialist provision, not only for themselves but for the families unable to access a well supported team.4 They described the emotional and physical toll of “stepping up” to fill 24/7 service gaps, often out of goodwill, and how this goodwill inadvertently masked systemic shortcomings and reinforced a broken system.4 These experiences are quintessential expressions of Ethico Existential Distress: ethical compromise intertwined with existential strain.
For policymakers, the implications are clear. Ethico Existential Distress is not an individual weakness. It is a predictable consequence of system design.
For policymakers, the implications are clear. Ethico Existential Distress is not an individual weakness. It is a predictable consequence of system design. When clinicians are repeatedly placed in situations where they must choose between their values and their workload, or between being present and being efficient, the resulting distress is structural, not personal. And when exposure to death and dying is intensified by inequity, fragmentation, and unmet need, the existential burden becomes inseparable from the ethical one.
Addressing Ethico Existential Distress requires system level action, including: commissioning models that protect continuity and relational time; investment in community based palliative care teams; addressing regional inequity as a matter of justice, not geography; recognising ethical and existential labour as real labour; and designing services that do not rely on the quiet sacrifice of staff.
If we want humane palliative care, we must create humane conditions for those who deliver it. Ethico Existential Distress gives us the language to name the problem. The next step is to redesign the system so that the work of caring for dying people does not wound those who provide it.
References
- Wang JJ, Ning J, Xu JL, Ng YH, Chui EWT. Correlates of Mortal Distress Among Healthcare Staff in Hospitals: A Systematic Review and Meta Analysis. J Adv Nurs. 2026.
- Jazaiery M, Rezaeifar K, Sayyah M, Cheraghi M. Relationship Between Mental Health and Death Anxiety During COVID 19 Pandemic in Dental Staff and Students. Front Psychiatry. 2022.
- Morley G, Ives J, Bradbury-Jones C, Irvine F. What is ‘moral distress’? A narrative synthesis of the literature. Nurs Ethics. 2019 May;26(3):646-662. doi: 10.1177/0969733017724354. Epub 2017 Oct 8. PMID: 28990446; PMCID: PMC6506903.
- Barrett L, Fraser L, Ziegler L, Jarvis S, Picton S, Hackett J. “We are running on the fumes of goodwill”: Professionals’ experiences of delivering 24/7 end of life care to children and their families. BMC Palliat Care. 2025.
Featured image by Peter Chiykowski on Unsplash
