Good death: A critical essay on the concept in global palliative and end of life care

Introduction

Palliative care emerged as a field in the 1960s in response to growing concern about the care of dying patients. The systematic neglect of the dying by health care systems was highlighted by studies in the UK and US in the mid-twentieth century,^1–5 drawing attention to the widespread prevalence of unmanaged pain, isolation, limited communication, and institutional practices in which dying patients were ignored and neglected once curative treatment was no longer possible.

Early pioneers of the hospice movement such as Dame Cicely Saunders positioned palliative care as a response to these experiences of dying. ⁶ They sought to define an alternative to these ‘bad deaths’ through a focus on symptom control, holistic, person-centred care, and acceptance of death as a natural part of life.^7,8 The situating of palliative care as a response to ‘bad’ dying provided the new discipline with coherence, legitimacy and set of norms, principles and goals to inform the future work. It generated the foundational principles that continue to shape definitions, policies and frameworks today.^9,10

This positioning becomes problematic, however, when attempting to define the reverse - what is a good death? This challenge has preoccupied not only palliative care practitioners, academics and policy makers in recent years but is a theme explored across philosophy, literature, theology, and the arts through the ages, reflecting its practical and existential significance.^11,12 The question of what makes a good death is as old as humanity itself. Contemporary and popular authors continue to engage with these topics, with many books becoming best sellers, attesting to their timeless relevance and importance.^13–18

At a global level, attempts have been made to measure the components of “a good death”. The Lien Foundation published two global rankings of a good death in their ‘Quality of Death Index’ in 2010 ¹⁹ and 2015, ²⁰ using a range of indictors including access to palliative care, opioid availability, government funding and policies and public awareness and education, with the 2015 version including measures of community engagement. Finkelstein et al.’s 2022 study on the quality of death and dying ²¹ brought in preference-weighted indicators, patient reported outcomes and moved from system-level assessments to bring in carer reports and reflections on deaths. From a practice perspective, there are difficulties in translating value-based definitions into practice and authors have noted that there is a distinction between process and outcome orientations.^22,23 Additionally, others critique that such definitional work presents a challenge as jargon and vague language limits shared terminology, ²⁴ including creating a professionalised construct ²⁵

These global assessments and rankings highlight the stark inequity in global dying in terms of access to pain relief and palliative care services, support for carers and families, as well as access to broader social and material resources. The Lancet commission on the Value of Death ²⁶ further described the pervasive inequities in how people die globally, moving beyond the presence or absence of palliative care services to understanding the complex and dynamic systems that shape experiences of dying, caring and grieving.

Alongside policy work and global rankings, empirical research has explored what constitutes a good death from the perspectives of patients, bereaved carers, and healthcare professionals. Across this literature, commonly identified elements include freedom from pain, dignity, the presence of important others, autonomy, and concerns about being a burden.^24,27–31 The concept of autonomy is frequently explored in these studies, showing how preferences at the end of life are often shaped through relationships rather than expressed as purely individual choice. Zaman ³² highlights how what counts as a “good death” is shaped not only by individual values but also by social and cultural contexts, the author emphasising that a good death involves both values about what is considered important and the practical context that make it possible or not. Acknowledging that people’s identities and life experiences influence the ability to achieve a normalised ‘good death’, Corpora ³³ suggests adopting an intersectional approach both in understanding what a good death may be for someone, but also to address inequities in end-of-life care. There has been a growth in research literature exploring cultural differences in conceptualisation of good death, including how this can lead to a ‘culture clash’ ³⁴ between palliative care values and wider cultural understandings of death and dying.

Much of the early evidence base was drawn from the US, UK, and other high-income settings, but more recent studies have begun to take a much-needed wider global frame.^35–38 Wijeyaratne et al. ³⁹ in their study of a good death in South Asia, show that there is no single shared definition of a good death even within a single setting, with participants instead describing a range of overlapping qualities—such as comfort, peace, respect, and relational closeness—shaped by individual preferences and circumstances. A systematic review by Wang et al. ⁴⁰ with studies from Hong Kong, Taiwan, Sweden and England highlights that patients’ understandings of a good death extend beyond the moment of dying to include processes such as awareness of illness, preparation, relationships, and being remembered after death, while also emphasising the role of cultural and religious contexts and the interaction between internal perspectives and external conditions.

These studies expose some of the tensions at the heart of the good death debate. Priorities or preferences regarding what makes a death good or otherwise are not universally accepted or easily generalisable and the evidence base remains partial due to global inequities in access to research funding, infrastructure and the resources required to publish in peer reviewed journals. This raises critical questions about whether attempts to define, standardise, or measure a “good death” risk imposing incomplete and normative assumptions onto a deeply diverse and human experience.

At the same time, some degree of standardisation and shared benchmarking seems important to enable the persistent inequities in end-of-life care to be addressed. Without efforts to identify, monitor and build minimum standards in access to services, essential medication and education, there is a risk that differences in access to pain relief, basic care, and support will remain. While standardisation cannot capture the diversity of experiences at the end of life, it can play a role in ensuring consistent access to basic needs at the end of life.

In response to these tensions, this critical essay sought to critically examine the concept of a “good death” within global palliative and end-of-life care. In order to stimulate wide global and interdisciplinary dialogue and debate to inform this essay and to enable a move beyond the review of existing published literature, we convened a webinar to explore the topic. This paper is not a scoping review, systematic review, or empirical qualitative study. Rather, it is a critical essay, drawing on literature, structured debate and critical perspectives to interrogate how the concept of a “good death” is constructed, operationalised, and valued within contemporary global palliative care discourse. We posed the following questions: Is the concept useful or tyrannical? And if so, in what contexts?

Open Thanatology webinar

Acknowledging both the dominance of the concept of good death in the palliative and end-of-life care literature and discourse, and calls to abandon the concept (see, for example, ⁴¹ ), we sought to provide a space to explore and engage with such critiques in a dynamic environment. To do this, EB and LS hosted a panel-based webinar entitled ‘Good Death: A Tyranny or Useful Concept? with three invited speakers (AC, HA, SR), chosen for their diverse experience and global perspectives including clinical, academic, and personal reflections. The webinar formed the basis of this critical essay, with each of the panellists’ and hosts’ talking points summarised below as ‘critical perspectives’ and participant questions and reflections informing the tensions described. In these sections, rather than adopting a standardised use of terminology or structure, we have retained our differences in how we write about good death and palliative care.

The webinar was facilitated by the Open Thanatology research group at The Open University (UK) in November 2023. It was free to attend, lasted 90 minutes, was recorded for future reference 42, and edited into a shorter version for a podcast. ⁴³ The event and this publication are unfunded, although individuals’ research discussed may have various sources of funding.

During the webinar, the hosts introduced the rationale for the webinar and outlined the key challenges with the concept of a good death. Each of the panellists then responded to the core contention ‘A good death: tyranny or useful concept?’, responding with their perspectives in turn and then the themes that emerged were discussed as a panel. Questions from the audience were then taken and discussed by the panellists and the hosts.

Ethical approval was sought from, and a favourable opinion was provided by, The Open University’s Human Research Ethics Committee (HREC 2023-0065-2). Panellists and webinar participants were made aware that the session was being recorded and that content and comments would form the basis of a published article on the topic; they were able to opt out of their comments being included in recordings or publications. No participants requested to opt out. Comments and critiques were taken from the webinar transcript and chat history and reviewed verbatim. They were initially discussed and summarised by three authors (SP, EB, LS). The summary of the critiques from the discussion and question and answer section were used alongside the panellists’ and hosts’ contributions to shape the tensions and recommendations presented in this essay. With the intention of developing an essay rather than empirical research project, no formal qualitative analysis techniques were used to analyse the content from the webinar; they were treated as opinions and perspectives and added depth, new insights and challenges to the points made in the essay.

In addition to the panellists and hosts, SP supported the development of the webinar content for this critical essay, including additional literature searching, drafting and manuscript preparation. The time lag between the webinar and this critical essay publication reflects our collective commitment to enable co-authors to balance authorship alongside professional practice, teaching, funded research projects, parenthood, illness and living in a world where, at times, even questioning if a death can be ‘good’ can feel like a luxury.

Critical perspectives

Erica Borgstrom, Professor of Medical Anthropology, The Open University.

Reflexive statement: I’m an anthropologist researching death and dying, with most of my fieldwork conducted in the UK. I also have personal experience of and previous research encounters with death in other countries, including the USA, Germany and Ghana. The juxtaposition of these and my disciplinary focus on culture influences my critique on the focus on individual, rather than relational and societal, approaches to understanding what ‘good’ means.

Within social sciences and death studies, there has been a long academic tradition of questioning the concept of ‘good death’. In this, it is important to examine from whose perspective a good death should be considered ⁴⁴ and acknowledging that the same death can be evaluated differently from different people’s perspectives. ⁴⁵ Many of the definitions of a good death cited in palliative and end-of-life care literature stress the importance of the dying/death experience aligning with the dying individual’s preferences. However, the dying individual is not the only person impacted by how their dying unfolds or is managed; indeed, their preferences may require the involvement of others to care for them. My research as an anthropologist involved understanding what end-of-life care is like from the perspectives of the dying, those around them, and care professionals, and I have become acutely aware that the alignment between one’s idealised preferences and actual care delivery as their body shifts from one state to another can be tricky to achieve. ⁴⁶ The misalignment can cause great distress and worry that one has failed if unable to deliver the ‘good death’ as desired, even if other features and daily living had been otherwise considered as ‘good’, or even if the preference would have caused emotional distress for the family (such as if someone wants to die at home). Moreover, a death considered as ‘good’ by some, including care professionals, could at the same time be considered ‘bad’ or ‘not quite right’ by those close to the dying person, including by spouses or children. As one of our webinar participants, a palliative care nurse noted: “I think labelling a death as good is very challenging given that for us, the healthcare professionals, the death might look good, but then when you ask the family, they might not agree with us. Sometimes, even a final gasp before death can be seen as suffering whereas medically, we wouldn’t label it as suffering.”

My contention with the concept of good death, at least in terms of how it is typically used in palliative and end-of-life care, is the emphasis it places on the dying individual’s preferences for setting the benchmark for evaluating their death. This causes several potential issues or challenges. Firstly, the emphasis on their preferences as taking primacy assumes they have agency to fulfil them or need to involve others to manage their dying process according to their wishes regardless of what others may or want to be able to do. Secondly, it minimises what others may find important or meaningful in the dying process from being fully recognised or perhaps even articulated, even if this may impact their professional role or future emotions following the bereavement. How can ‘good death’ hold the multiple perspectives without becoming a benchmark to (perhaps unfairly) judge care, both formal and informal?

Libby Sallnow, Associate Professor in Palliative and End-of-Life Care, University College London.

Reflexive statement: I am a practicing community palliative care doctor and academic in the UK. I hold critical views on the value of the universal applicability of the concept of a good death and feel challenged by the need to both build equity in death dying and grieving while not compromising a respect for difference.

Death is one of the few universal experiences, meaning it is a common human concern. I think three key considerations frame this discussion: the fact that experiences of death matter, the power of language in framing a ‘good’ or a ‘bad’ death, and the illusion of choice at these times.

The experience of death matters. It matters for the person dying, for those who care for them, and for the wider community and society. For individuals, comfort, dignity, connection, spiritual beliefs or specific cultural practices may be essential components of death. Ensuring people can die without pain, in the presence of those important to them, or with the relevant religious observances or rituals are important goals in themselves. But the impacts of dying well, or poorly, extend beyond the individual. Traumatic deaths can influence families, friends and carers for the rest of their lives and across generations and research has demonstrated the impacts of poor experiences at the end of life for the bereaved.^47,48 Conversely, feeling supported and confident to participate in the care for someone dying can offer growth, healing, and connection for that person but also their wider community.^49–51 It can support the recognition and acceptance of death as a part of life. From a societal perspective, how the dying are cared for reflects the values and priorities of a society. It reveals how the vulnerable are supported, how suffering is recognised and addressed and the value placed on the dignity. It is important to get it right.

The second point is that language shapes what is defined as a ‘good’ death, and as a result, what constitutes a ‘bad’ death. It frames who succeeds and who fails. Words carry moral weight and convey cultural assumptions. Reducing the universal experience of death to a checklist of outcomes is not only difficult due to the diversity of wishes, priorities, and contexts when people are dying, but it can also be dangerous. It promotes a singular view of what counts as a good death. Who gets to define what a good death entails? Language and norms often stem from the dominant Western view of autonomy and control. ⁵² Diverging from these norms can be hard and such divergence can be framed as failure, marginalising different experiences at the end of life.

Lastly, it is important to recognise both the inevitability and inherent complexity of dying. Even with planning and resources, dying is unpredictable. It is a process that can be messy, distressing, uplifting and intimate. At some point it will happen to everyone. It can bring profound connection and equally fear, confusion, and loss of control. Set against the wider context of global inequities in access to basic health care, curative or palliative, ⁵³ the idea that the circumstances in which people die can be controlled appears fanciful. Control or choice in death when no control or choice has been possible in life makes the concept of a good death at best unattainable or worst meaningless. Discussions on what a good death means must be linked explicitly with concerted advocacy efforts to tackle these established inequities, across and within countries.

Aileen Collier, Associate Professor, Research Centre for Palliative Care Death and Dying, Flinders University.

Reflexive statement: I am an Australia-based academic focused on safety, quality, and equity of palliative care. My perspective has been shaped by years of practice as a specialist palliative care nurse in UK, Australia, and Aotearoa New Zealand, as well as volunteer work in Lao PDR. Grounded in a PhD in the humanities and social sciences, my research critically examines predominant ideas about palliative care including normative understandings of what constitutes a ‘good death’.

Several authors have questioned whether or not a ‘good death’ is possible.^54–56 From Scarre’s perspective ⁵⁵ (2012, p1085) in order for a death to be good, a person must, at the same time, have an awareness of the existential significance of the event with an “absence of mental anguish” These, according to Scarre, are mutually exclusive. Sociological critiques have gone as far as to argue that the ‘good death’ enterprise is a form of social control.^44,57 Along with co-author Chapman, I have recently extended these arguments positing that pursuit of the ‘good death’ risks further marginalising those whose ideas of a ‘good death’ either do not align with normative notions of a ‘good death’ or for whom access to such a ‘normative’ good death is not possible. ⁵⁸ Further, these arguments challenge my identity as a palliative care nurse whereby the moral and affective undertaking is to contribute to a ‘good death’ for patients, families and, in a specialist nurse role, for others not under my direct care. I have reflected and continue to reflect that pursuit of the ‘good death’ may be potentially harmful. What are the effects of what, for the most part, are professional, often academic imaginaries of the good death? Who gets to decide if a death is good or not and what are the effects of doing so? Indeed, who gets to decide if a death is ‘bad’ or not? Is there a societal effect when we, promulgate the good death ideology?

A further and related question is to what extent does the public health palliative care movement (see for example ⁵⁹ ) play a part in the dichotomising death as good or bad. What, if any are the unintended consequences of doing so? Does, for example becoming ‘death literate’ (assuming one is not already or that the goal of ‘death literacy’ is a desirable societal pursuit) place individuals or communities in a position of potential failure if a death cannot be ‘good’. Is there a risk, for example that the good death enterprise perpetuates inequity of care? If a death is not good then it is then constructed as ‘bad’. What is the effect of this and what of the experience of the ‘bad death’ – for those left behind. How does living relate to a good or bad death? What if there is ‘bad’ living? Is it possible to have a good death if one has had a bad life? What are the wider effects of idealising a death as ‘good’ in a global context i.e. war and conflict and of natural disasters? What do we do to a community and a population when the social imaginary of a ‘good death’ is impossible to meet for example during the height of the pandemic? What are the effects on clinicians, when despite their very best efforts, a ‘good death’ is unable to be provided due to organisational constraints, conditions of the environment. And what, if when the good death imperative becomes so powerful or is made so political that a particular way of dying and death is privileged over life and living and at all costs. As Christian Ntizimira has said “the focus isn’t on judging things as good or bad; instead its’ about embracing the path of acquiring knowledge and exchanging experiences to create a more promising future for palliative care worldwide”. ⁶⁰

Hanum Atikasari, Postdoctoral Researcher, Faculty of Arts and Social Sciences, Maastricht University.

Reflexive statement: I am a medical anthropologist, and my work focuses on (end-of-life) care, well-being, and advanced illness in Indonesia. The reflection in this paper draws on my ethnographic research on palliative care and on following the care trajectories of patients with advanced cancer, and it is grounded in my own positionalities — particularly as a native Indonesian speaker who grew up and lived in Indonesia for more than 25 years.

There is a different cultural expectation of a good death. Social scientists, including medical anthropologists, have studied diverse perspectives on good death, ranging from place of death,^61,62 timing of death, ⁶³ social and cultural circumstances^64,65 and religious circumstances. ⁶⁶ Scott Stonington shows how his participants in Northern Thailand choreographing a good death by taking a dying person to the hospital to ensure that they would receive all possible treatment, but then rushing home to die so that their death would take place in the ‘right place’, which reflects the notions of the home as a moral space that would endure the process of rebirth 61].

In Indonesia, a Muslim majority country, where I conducted my ethnographic research, dying and prognosis are not openly discussed and talking about good death and dying were mostly done retrospectively.^67,68 Most people consider an active planning of where, how, and when to die as overruling God’s will, and this is not allowed. This religious idea contrasts with the idea that encourages people to have more autonomy and control and make decisions about their care trajectories.

Another example of the influence of religion concerns pain medication, which can also contradict with the advice from biomedical tradition.^69,70 From a medical perspective, suppressing pain is often seen as necessary to alleviate suffering. However, some people believe that it is actually enduring pain that is necessary to alleviate suffering, because it is by enduring pain that they believe they pay for their ‘sins’. ⁶¹ In Islam, the ideas around good death intertwines between ‘this world’ and ‘the afterlife’.^66,69,71,72 Many Muslims believe that steadfastness in their handling of any pain or suffering that they encounter, is a way to seek forgiveness and reward in afterlife.

During my ethnographic fieldwork in Indonesia, most participants linked the notion of a good or bad death to religious belief. A good death in the Islamic context, called husnul khotimah, is divided into time, place, and circumstances. For instance, many people in my research considered a death to be good if the person who died did so on a Friday, which is the most important day of the week for Muslims. Or they considered a good death to happen when the person prayed before they died, or they were surrounded by family who recited the Quran.^66,68 In contrast, there is also a concept of bad death/suul khotimah. In Islam, for example, suicide is considered suul khotimah as it is believed that death cannot be postponed nor accelerated, and only God decides the end of life.

Labelling of good and bad death can lead to stigmatizing not only the dead person but also the family of the dead person as it is often associated with the morality of the person in their life. Therefore, I think we should be careful with the expectation of a good death. Is the expectation of having a good death not adding more burden to the patient (and their family)? In any case, it is important to examine not only what people see as a good death in various cultural contexts, but also whether the concept of a ‘good death’ is helpful to them at all.

Smriti Rana, Head – WHO Collaborating Centre for Training and Policy on Access to Pain Relief; Director - Strategic Communications Pallium India.

Reflexive statement: I trained as a Psychologist and have worked in palliative care in India for over two decades, roles including community based palliative care in Kerala, patient and caregiver advocacy, advance care planning and policy reform. This professional background and my experience as primary caregiver to people with cancer, interstitial lung disease, addiction and mental health conditions has shaped my perspective on the necessary context around each death encountered, and what it means to each individual and their families.

The framing of the Good Death is a very narrow view, while paradoxically requiring several moving parts to come together and click into place. The culture, research and politics that shape this contemporary framing stem from the Global North, embedded in its values of autonomy, individual dignity, the elimination of suffering - and all the attendant judgements. When this framing is transplanted onto the Global South, several tensions emerge.

Western medical approaches believe that suffering has to be ‘mitigated’ as far as possible, much of which is associated with physical distress. Access to healthcare and medicines for pain relief and other forms of symptom control become vital. The structural inequities in the Global South often do not allow for this kind of access. ⁷³ Access to opioids is extremely limited due to regulatory, economic, and infrastructural barriers, and expectation of a pain-free death can be culturally discordant, materially unattainable or even paternalistic. In many Global South contexts, suffering can even be understood as spiritually meaningful, communally shared, or unavoidable (primarily because of the accepted reality of inequities).

Autonomy, as it is largely understood through a Western lens, assumes an individualized, liberal stance. By contrast, in many Global South cultures, autonomy and dignity are relational and entrenched within family or communal networks. Dependency is not always undignified, and collective decision-making often affords comfort. ⁷⁴

The “Good Death” requires a certain infrastructure, that raises the question of distributive justice. In many places, dying is still managed primarily within families and communities rather than by medical professionals. In the absence of such infrastructure, can the Good Death only be the privilege of a few? This may undermine traditional caregiving practices or devalue traditional knowledge about and practices around dying. ³²

Many cultures centre death within religious, ancestral, or communal frameworks, relying on local cosmologies and rituals, placing them above pain management. We see this in the Pashupathinath temple complex in Kathmandu Nepal, where the elderly and ailing come to live out their last days in a room above the cremation grounds. Their belief that salvation is attained by being cremated here, in the holiest site in the country, far outstrips their need for physical comfort. Families often bring loved ones here straight from an ICU, where the patient dies in a matter of hours, leaving the family in peace that they did what was best for the soul.

Many death rituals in the colonies were outlawed by colonisers because they found them barbaric or gruesome. The expectation was for death to be sanitised, sterile and as far as possible invisible. Rituals that engaged the sensorium were recoiled from. A young man from the Ao tribe of Nagaland in India speaks of how the tribe’s death rituals were banned 3 generations ago, but the young still carry shame around it. This is the danger of imposing value-judgments on divergent practices.

Presenting the “Good Death” as a universal aspiration, risks reinforcing cultural imperialism. What constitutes a dignified or meaningful death varies across contexts, and local practices - whether tied to ritual, spirituality, or kinship - can be marginalized by Western frameworks.

The idea of a good death is not a neutral or universally applicable ideal; it is a culturally specific construct that becomes controversial when exported to settings where material conditions and cultural values differ sharply.

Recommendations for the future

Conclusion

The concept of a good death is complex and fraught with cultural, ethical and clinical tensions. This essay has explored the term from global and critical perspectives. Whilst it can serve to open discussions on what death means for people, highlighting the importance of this life stage and informing advocacy efforts, the term can also be restrictive or harmful, marginalising diverse perspectives and limiting debate. Rather than seeking consensus or a singular, universally applicable definition, we advocate for a pluralist approach, one that recognises and respects that diversity exists in the way people may wish to die, as there exists diversity in the way people would like to live. Holding a pluralist perspective, whilst strongly advocating to address the structural determinants that enable or deny people deaths they would wish, are essential requirements to reframe this debate.