Palliative & End-of-Life Care Nursing Essay

Palliative care represents one of the most profound and philosophically demanding domains of nursing practice. It is, at its most fundamental level, a discipline that refuses the false dichotomy between living and dying — a field that insists on the full humanity of every patient regardless of prognosis, and that marshals the full repertoire of clinical skill, psychological insight, spiritual sensitivity, and ethical reasoning in the service of human dignity at its most vulnerable. For nursing, which has always been concerned with the whole person rather than simply the disease, palliative care is not a departure from ordinary nursing practice but its most complete expression.

The World Health Organization (2020) defines palliative care as “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.” This definition, deceptively compact, contains within it an entire programme of practice: the emphasis on quality of life as a primary metric; the insistence that care extends to the family as well as the patient; the acknowledgement of suffering as a multidimensional phenomenon that cannot be reduced to physical pain alone; and the commitment to early identification rather than simply end-stage intervention. Each of these elements carries significant implications for nursing practice, and each will be examined in detail in the sections that follow.

It is important at the outset to distinguish between palliative care and end-of-life care, as the two terms are frequently conflated in both lay and clinical usage. Palliative care is a broad approach applicable at any stage of a life-limiting illness and may run concurrently with curative or disease-modifying treatments — a patient newly diagnosed with stage III ovarian cancer may begin palliative care inputs alongside active chemotherapy. End-of-life care, by contrast, is the subset of palliative care concerned specifically with the final weeks, days, and hours of life — the period when death is anticipated imminently and when the focus shifts decisively from prolonging life to ensuring its final passage is as comfortable, dignified, and meaningful as possible. All end-of-life care is palliative care, but palliative care encompasses a much longer and broader clinical trajectory.

This essay examines the full breadth of palliative and end-of-life nursing practice. It addresses the historical development of the hospice and palliative care movement; the core clinical competencies required for effective pain and symptom management; the psychological, spiritual, and existential dimensions of care; the critical importance of therapeutic communication; the ethical and legal frameworks that govern nursing decisions at the end of life; the cultural competencies required in an increasingly diverse patient population; the nurse’s role in advance care planning; the particular challenges of paediatric palliative care and non-cancer populations; the essential contribution of interprofessional collaboration; and the growing recognition of compassion fatigue as a professional and institutional responsibility. Throughout, the analysis is grounded in the best available evidence base and contextualised within contemporary UK and international nursing standards.

The history of palliative care is inseparable from the history of nursing itself. Long before the establishment of the modern hospice movement, nurses — often religious women in medieval hospitals and infirmaries — provided comfort and care to the dying as a primary vocation rather than a residual activity. The word hospice derives from the Latin hospitium, meaning both host and guest, and the medieval institutions bearing this name provided shelter, food, and care to pilgrims, the poor, and the dying with an explicit understanding that care of the body and care of the soul were inseparable obligations.

The modern hospice and palliative care movement is generally traced to the work of Dame Cicely Saunders, a British nurse, social worker, and ultimately physician who founded St Christopher’s Hospice in London in 1967. Saunders’ contribution was not merely institutional — she articulated a new clinical and philosophical framework that she called the concept of total pain, which recognised that the suffering of dying patients was simultaneously physical, psychological, social, and spiritual, and that effective care required attention to all four dimensions simultaneously. This was a radical challenge to the dominant biomedical model of her time, which tended to treat the dying patient as a clinical failure and to marginalise palliative care as a lesser or consolatory form of medicine.

Saunders’ innovation was to insist that palliation was not merely the absence of cure but the presence of expert, evidence-based, and profoundly humane care — that pain could and should be prevented rather than simply responded to, that opioids could be titrated effectively without causing addiction or hastening death, and that the final period of a person’s life was as worthy of clinical excellence as any other. Her collaboration with the American researcher Elisabeth Kübler-Ross, whose 1969 work On Death and Dying introduced the now-famous five stages of grief (denial, anger, bargaining, depression, acceptance), helped establish a psychological framework for understanding the dying patient’s experience that complemented Saunders’ clinical innovations.

In the United Kingdom, the hospice movement expanded rapidly through the 1970s and 1980s, supported by charitable funding and eventually by NHS commissioning. The establishment of the Association for Palliative Medicine in 1985 and the formal recognition of palliative medicine as a medical specialty in 1987 consolidated the field’s academic and clinical infrastructure. In nursing, the development of the Macmillan Nursing Service and the Marie Curie Cancer Care organisation created dedicated clinical nursing roles in palliative care that brought specialist expertise into community and home settings — a recognition that most dying people prefer to die at home if this can be safely and comfortably achieved.

The international dimension of palliative care’s development is equally significant. The World Health Organization’s adoption of palliative care as a global health priority — first articulated in its 1990 Cancer Pain Relief and Palliative Care report and subsequently reinforced in successive resolutions of the World Health Assembly — transformed palliative care from a Western preoccupation into a global public health obligation. The recognition that access to morphine and other essential palliative medicines was a human rights issue challenged governments worldwide to address restrictive drug policies that left millions of dying people in unrelieved pain.

The principles that underpin palliative nursing practice are articulated across numerous authoritative frameworks — from the World Health Organization’s definitional statement to the UK’s National Institute for Health and Care Excellence (NICE) Quality Standard QS13 (2011), the NMC Code of Professional Conduct (2018), and the Hospice UK standards for specialist palliative care nursing. While these frameworks vary in emphasis and specificity, they converge on a core set of values that distinguish palliative nursing from other branches of clinical practice.

1. Affirming life while accepting dying as a natural process. Palliative nursing neither hastens nor postpones death but affirms that dying is a normal human process. The nurse’s role is to ensure that the dying process is as comfortable and meaningful as possible, not to resist or accelerate it. This requires a profound acceptance of death’s inevitability combined with a commitment to the fullest possible quality of life until death occurs.
2. Providing relief from pain and other distressing symptoms. Symptom management is the clinical cornerstone of palliative care. The elimination or reduction of physical suffering — pain, dyspnoea, nausea, constipation, fatigue, delirium — requires sophisticated pharmacological knowledge, continuous assessment, and the willingness to titrate medications to effect rather than to fixed-dose protocols.
3. Integrating psychological and spiritual care with physical care. Physical symptoms cannot be effectively managed in isolation from the psychological, existential, and spiritual dimensions of the patient’s experience. Total pain, in Saunders’ formulation, is irreducible to its physical component — and nurses who attend only to physiology will inevitably fail their patients.
4. Extending care to the family as a unit of care. In palliative nursing, the family — defined broadly to include whoever the patient identifies as their closest support — is not merely background context but a co-recipient of care. Families require information, emotional support, practical assistance, and bereavement follow-up.
5. Respecting patient autonomy and self-determination. Every competent patient has the right to make decisions about their own care, including the right to refuse treatment, to choose the place of their death, and to articulate preferences about the final period of their life through advance care planning. Nursing’s obligation is to facilitate and protect this autonomy, not merely to comply with it.
6. Working collaboratively within an interprofessional team. No single professional — including the most experienced palliative care specialist — possesses all the competencies required for comprehensive end-of-life care. Effective palliative nursing requires genuine, mutual collaboration with medicine, social work, chaplaincy, pharmacy, physiotherapy, occupational therapy, and community care services.
7. Maintaining professional compassion without losing self. Palliative nursing demands an unusual level of emotional engagement with patients and families at their most vulnerable. This engagement must be compassionate rather than detached — but compassion without boundaries and self-care leads to burnout, compassion fatigue, and ultimately impaired clinical performance.
8. Advocating for equity of access and quality of care. Good deaths should not be the preserve of the wealthy, the white, or the articulate. Palliative nursing carries a professional obligation to identify and challenge inequities in access to specialist palliative care services across populations defined by ethnicity, socioeconomic status, geography, diagnosis type, or care setting.

Pain management is the most technically demanding and clinically visible component of palliative nursing practice. The International Association for the Study of Pain (IASP, 2020) defines pain as “an unpleasant sensory and emotional experience associated with, or resembling that associated with, actual or potential tissue damage,” and its revised definition emphasises that pain is always a personal experience — one that cannot be measured by external observation alone, that is influenced by biological, psychological, and social factors, and that differs from nociception. For the palliative care nurse, this definition has profound practical implications: pain assessment must always begin with the patient’s own report, and the nurse who substitutes their own judgement for the patient’s self-description risks systematic under-treatment.

The WHO Analgesic Ladder

The World Health Organization’s three-step analgesic ladder, originally developed for cancer pain management in 1986 and subsequently applied more broadly, remains the foundational framework for pharmacological pain management in palliative care. The ladder prescribes a stepwise escalation: Step 1 (mild pain) — non-opioid analgesics (paracetamol, NSAIDs); Step 2 (moderate pain) — weak opioids (codeine, tramadol) ± non-opioids; Step 3 (severe pain) — strong opioids (morphine, oxycodone, fentanyl, hydromorphone) ± non-opioids and adjuvants. The principle is to match analgesic potency to pain severity, titrating upwards until effective control is achieved.

In contemporary palliative practice, the ladder has been extended and sometimes compressed — some clinicians advocate moving directly to low-dose strong opioids (Step 3) for moderate-to-severe pain, bypassing Step 2, on the grounds that weak opioids are less effective and have more adverse effects relative to their analgesic benefit in this patient population. The use of opioid rotation — switching between different opioid molecules when tolerance or adverse effects limit escalation of the current opioid — is an important nursing competency, requiring knowledge of equianalgesic dosing tables and careful monitoring during transition periods.

The nurse’s role in opioid-based analgesia extends well beyond administration. It includes continuous, systematic pain assessment using validated tools — the Numerical Rating Scale (NRS), the Visual Analogue Scale (VAS), the Abbey Pain Scale (for patients unable to self-report, including those with advanced dementia), and the Edmonton Symptom Assessment Scale (ESAS) for comprehensive symptom burden monitoring. It includes vigilance for the adverse effects of opioid therapy — constipation (which requires prophylactic laxatives from the outset of opioid prescribing), nausea and vomiting (particularly in the first days of opioid initiation), sedation, and respiratory depression. And it includes patient and family education — particularly the persistent and damaging misconception that morphine causes addiction or hastens death, misconceptions that frequently cause patients to under-report pain or refuse adequate analgesia.

Breakthrough Pain and Anticipatory Prescribing

Breakthrough pain — defined as a transient exacerbation of pain that occurs either spontaneously or in relation to a specific predictable or unpredictable trigger — affects approximately 65% of patients with advanced cancer and a significant proportion of patients with non-cancer diagnoses in palliative care settings. Management requires the availability of rapid-onset, short-acting analgesia in addition to the regular background analgesic regimen, typically prescribed at a dose equivalent to one-sixth of the total daily opioid dose. The principle of anticipatory prescribing — the preparation and prescription of medications in advance of the deterioration they are intended to address — is a critical nursing competency, particularly in community and hospice settings. When a patient is clearly entering the final days of life, medications for pain, agitation, respiratory distress, nausea, and excessive secretions should be prescribed and available before they are needed, so that the dying process is not disrupted by urgent clinical reviews, prescription delays, or pharmacy closures.

Dyspnoea, Nausea, and Delirium

Pain, while arguably the most feared symptom in palliative care, is rarely isolated. The burden of symptom experience in advanced illness is typically multiple and overlapping. Dyspnoea — the subjective experience of breathlessness — is particularly distressing, described by patients and families as one of the most frightening aspects of dying. Unlike oxygen saturation, dyspnoea is inherently subjective and may be present in patients whose SpO₂ appears normal, or absent in patients with significantly impaired gas exchange. Its management combines pharmacological approaches (low-dose opioids have the strongest evidence base; anxiolytics such as midazolam are used for the anxiety component; supplemental oxygen benefits hypoxaemic patients but not necessarily those who are normoxaemic) with non-pharmacological interventions including fan therapy directed at the face, repositioning, breathlessness management techniques, and addressing the significant anxiety that almost universally accompanies dyspnoea.

Nausea and vomiting in palliative care may have multiple concurrent causes — opioid-induced, disease-related (gastric stasis, bowel obstruction, raised intracranial pressure, uraemia), medication-related, or anxiety-driven — and effective management requires identification of the most likely mechanism before selecting an antiemetic. Metoclopramide is effective for gastric stasis; haloperidol for chemically-driven or opioid-induced nausea; cyclizine for motion component and raised intracranial pressure; ondansetron for chemotherapy-related nausea. The inappropriate use of a single antiemetic for all causes is a common clinical error with significant consequences for symptom burden.

Terminal delirium — the fluctuating cognitive impairment, perceptual disturbance, and agitation that affects up to 90% of dying patients in the final hours — presents particular challenges. It causes profound distress to families who may interpret confused or distressed behaviour as evidence of uncontrolled pain or emotional suffering, and its management requires a combination of pharmacological sedation (typically haloperidol for agitated delirium; midazolam for refractory agitation; levomepromazine for combined sedation and antiemetic effect) and intensive family support and explanation. The nursing assessment of whether sedation is adequate, appropriate, and proportionate in terminal delirium is a critical clinical judgement with significant ethical dimensions.

Cicely Saunders’ concept of total pain remains the most powerful corrective to the tendency of both medical education and institutional practice to reduce the experience of dying to its physical dimensions. A patient whose cancer pain is well controlled may nonetheless be experiencing profound psychological anguish — grief over anticipated losses, terror at the unknown, corrosive guilt about perceived burdens placed on family, or existential despair at the apparent meaninglessness of their suffering. These dimensions of distress are not secondary to physical pain; in many patients they are primary, and their unaddressed presence significantly undermines the effectiveness of physical symptom management.

Psychological Responses to Life-Limiting Illness

The psychological responses of patients facing life-limiting illness are neither uniform nor predictably sequential. Kübler-Ross’s five-stage model — denial, anger, bargaining, depression, acceptance — has been enormously influential in shaping popular and clinical understanding of dying, but it has also been significantly misapplied. The stages were never intended as a rigid developmental sequence through which all dying patients must pass; they were phenomenological descriptions of common emotional experiences that may recur, coexist, or be entirely absent in any individual patient. More recent conceptual frameworks, including Worden’s Four Tasks of Grief and Stroebe and Schut’s Dual Process Model, offer more flexible and empirically grounded accounts of how people adapt — or fail to adapt — to impending death.

Anxiety and depression are the most common psychological comorbidities in palliative populations, with prevalence estimates ranging from 20–40% for clinical depression and 10–30% for anxiety disorders in patients with advanced cancer — though diagnostic complexity (the overlap between depressive symptoms and normal grief, and between anxiety and understandable fear) makes precise epidemiology difficult. Nursing assessment of psychological distress requires validated screening tools — the Patient Health Questionnaire (PHQ-9) for depression, the Generalised Anxiety Disorder Scale (GAD-7), and the single-item Distress Thermometer as a rapid screen — combined with sensitive clinical interviewing. The management of depression and anxiety in palliative care combines pharmacological interventions (antidepressants, anxiolytics with attention to patient prognosis and time-to-effect), psychological therapies (Cognitive Behavioural Therapy, Dignity Therapy, Meaning-Centred Psychotherapy), and nursing-provided psychosocial support.

Spiritual Care and Existential Distress

Spiritual care in palliative nursing is frequently misunderstood as being synonymous with religious care — the domain of hospital chaplains rather than nurses. In fact, spirituality is a broader category than religion: it refers to the human search for meaning, purpose, connection, and transcendence, whether expressed in explicitly religious terms or entirely outside any religious framework. Many patients who identify as non-religious will nonetheless experience profound existential or spiritual distress at the end of life — a crisis of meaning, a search for understanding of why they have suffered, a desire for legacy or reconciliation, or a terror of non-existence that has no specific religious content.

Nursing’s role in spiritual care does not require theological expertise. It requires the capacity to be present with patients in their suffering without the compulsion to fix, explain, or reassure prematurely; the skill to ask questions that invite rather than constrain the expression of spiritual concerns; and the knowledge to refer appropriately to specialist chaplaincy services, religious leaders of the patient’s own tradition, or psychological services as indicated. The FICA Spiritual History Tool (Faith, Importance, Community, Address in Care) provides a structured framework for incorporating spiritual assessment into nursing practice, as does the HOPE questionnaire and the Royal College of Nursing’s Spirituality in Nursing Care Framework (2011).

Dignity is a concept closely related to but distinct from spirituality, and it has received significant empirical attention through the work of Harvey Chochinov and colleagues in their development of Dignity Therapy — a brief, narrative-based psychotherapy designed to address existential distress in terminally ill patients by helping them articulate their sense of identity, legacy, and meaning. The Dignity Model identifies multiple factors that can threaten or support a dying patient’s sense of dignity — illness-related concerns (symptom distress, functional decline, cognitive impairment), dignity-conserving repertoire (psychological resilience, spiritual well-being, hopefulness), and social dignity inventory (privacy, continuity, role preservation, care tenor). The nursing implications of this model are substantial: nurses who treat patients with unconditional positive regard, maintain their physical privacy and personal appearance, address them by their preferred name and role, and treat their histories and relationships with respect are actively protecting patient dignity in ways that have measurable effects on psychological well-being.

The WHO definition of palliative care explicitly names the family — alongside the patient — as the recipient of palliative care. This is not a mere rhetorical flourish; it represents a substantive recognition that serious illness does not happen to an individual in isolation, but within a network of relationships that are simultaneously resources for coping and themselves profoundly affected by the illness and its trajectory. Family members, carers, and close friends of dying patients are themselves at high risk of anxiety, depression, anticipatory grief, physical exhaustion, social isolation, and eventually complicated bereavement — and nursing’s failure to attend to their needs has significant consequences both for the quality of care they are able to provide and for their own long-term health and well-being.

Needs of Family Carers

The needs of family carers in palliative care are heterogeneous and change across the illness trajectory. In the early palliative phase, when the patient may still be relatively well and living at home, carers typically require information about the illness and its likely progression; practical skills training (administration of medications, use of syringe drivers, management of specific symptoms, recognition of signs of deterioration); and emotional support and acknowledgement of their own grief and fear. As the illness advances, practical and physical demands intensify — carers may be providing round-the-clock support, and the physical and emotional toll escalates accordingly. Research consistently demonstrates that carer burden and carer distress are significantly associated with patient distress outcomes, creating a bidirectional relationship in which the effective care of the family carer is not only intrinsically important but instrumental to good patient care.

Nursing assessment of carer needs should be systematic and continuous rather than episodic. The Carers Assessment of Difficulties Index (CADI) and the Zarit Burden Interview are validated tools for assessing carer burden, while the Supportive Care Needs Survey for Partners and Caregivers (SCNS-P&C) identifies specific domains of unmet need. In practice, however, sensitive, open-ended clinical interviewing — “How are you managing? Is there anything we could do differently to make this easier for you?” — often provides the most clinically useful information.

Recognising and Supporting Anticipatory Grief

Anticipatory grief — the grief experienced before rather than after a death — is a normal and near-universal experience among family carers of dying patients. It encompasses multiple losses: the gradual loss of the person as they were, loss of the future they expected to share, loss of one’s own identity as partner, parent, or child of a well person, and the cumulative emotional work of watching someone they love suffer. Nursing recognition of anticipatory grief — validating it as a normal human response rather than a pathological one, creating space for its expression, and distinguishing it from the complicated grief that may require specialist psychological intervention — is an important clinical skill.

Bereavement Support

The nurse’s relationship with the family does not end at the moment of the patient’s death. Bereavement follow-up — offered routinely by most specialist palliative care services — recognises that the period immediately following a death is one of acute vulnerability and that early, appropriately targeted support can significantly reduce the risk of complicated bereavement outcomes. A bereavement phone call within two weeks of the death to check on the family’s welfare, the provision of written information about grief and local bereavement support services, and the offer of a follow-up appointment to discuss the patient’s final weeks all represent low-cost, high-impact nursing interventions. The identification of family members at high risk of complicated grief — those with pre-existing mental health difficulties, those who were highly dependent on the deceased, those who experienced a traumatic or sudden death despite the palliative context, or those with limited social support — enables targeted referral to specialist bereavement counselling or psychological services.

If symptom management is the clinical science of palliative care, communication is its clinical art — and no dimension of palliative nursing practice is simultaneously so demanding and so essential. The quality of communication between nurses and dying patients has been consistently identified in patient and family satisfaction studies as among the strongest predictors of perceived care quality, and its failure — in the form of withheld information, premature closure of difficult conversations, false reassurance, or technical competence without human connection — is among the most common sources of complaint and suffering at the end of life.

The Calgary-Cambridge Model in Palliative Practice

The Calgary-Cambridge Observation Guide (Silverman, Kurtz, & Draper, 2013) provides the most widely used framework for clinical communication education in UK health professions training, and its application to palliative care contexts is direct and instructive. The model organises the clinical consultation into five sequential tasks — initiating the session, gathering information, building the relationship, explaining and planning, and closing the session — with a continuous task of providing structure running throughout. In palliative care contexts, the “gathering information” phase is particularly important: understanding the patient’s illness experience, their ideas about what is happening, their concerns, their expectations of care, and their goals — what has become known as the ICE framework — is the foundation on which all subsequent communication is built.

The palliative nursing context also requires specific communication skills that extend beyond the Calgary-Cambridge model’s general framework. These include: the ability to deliver or discuss prognosis sensitively and honestly without creating false hope or unnecessary despair; skills in breaking bad news using structured frameworks such as the SPIKES protocol (Setting, Perception, Invitation, Knowledge, Empathy, Strategy and Summary); the capacity to tolerate and use silence therapeutically, resisting the urge to fill emotional space with clinical activity; and the ability to conduct what are known as goals of care conversations — dialogues that help patients and families articulate what matters most to them in the time remaining and align clinical care accordingly.

Truth-Telling and Collusion

The ethics of truth-telling in palliative care involves a tension between the principle of patient autonomy — which requires that patients have accurate information about their condition in order to make meaningful decisions — and the paternalistic desire to protect patients from distressing information. In contemporary Western nursing ethics, the presumption is strongly in favour of honest communication: patients have a right to know their diagnosis and prognosis, and deception or information-withholding constitutes a violation of their autonomy regardless of the intention to protect. The NMC Code (2018) requires nurses to “be open and candid with all service users about all aspects of care and treatment,” and the principle of duty of candour legislated in the UK’s Health and Social Care Act 2008 (Regulated Activities) Regulations 2014 reinforces this obligation.

However, the right to know is paired with the right to choose not to know — and some patients, particularly from cultural backgrounds where family-mediated disclosure is normative, will express a preference to have their family manage clinical information on their behalf. The nurse’s obligation in such cases is neither to override the patient’s expressed preference nor to accept family instructions that systematically exclude the patient from decision-making without their consent. The key clinical question is always: what does this patient want to know? — and the answer to that question can only be obtained by sensitive, direct inquiry with the patient themselves, in private and without family members present if they are acting as gatekeepers.

Collusion — the agreement, implicit or explicit, between family members and healthcare professionals to withhold a terminal diagnosis from the patient — is one of the most challenging communication problems in palliative nursing. It typically arises from a desire to protect the patient from distress, but research consistently demonstrates that most patients know or strongly suspect their prognosis even when it has not been explicitly disclosed, and that collusion creates a corrosive wall of pretence that isolates patients, prevents the closure and reconciliation that many dying people seek, and deprives them of the opportunity to make informed decisions about their remaining time. The nurse’s role is to gently but firmly challenge collusion, to help family members understand that honesty — delivered with compassion — is generally less distressing than deception, and to support a shift towards open, family-inclusive communication.

Communication in the Final Hours

The final hours and days of life present specific communication challenges. Hearing is generally the last sense to be lost, and nurses should communicate the assumption that patients can hear even when unconscious or unresponsive — speaking to patients before touching them, narrating care activities, and encouraging families to speak to their dying loved ones. Communication with families during the active dying phase includes honest, compassionate explanation of what is happening physiologically — the Cheyne-Stokes breathing pattern, mottling of the skin, the death rattle caused by retained secretions in a patient unable to cough — so that these normal but distressing phenomena do not increase family distress unnecessarily. The nurse who is present at the moment of death, and who supports the family through those first minutes and hours afterwards, plays an irreplaceable role in creating the conditions for a death that will later be remembered as peaceful rather than traumatic.

End-of-life care occupies terrain that is ethically more complex and more contested than almost any other area of nursing practice. The convergence of profound value conflicts — between life prolongation and comfort, between patient autonomy and family interests, between professional obligations and personal conscience — creates a moral landscape in which simple rule-following provides inadequate guidance. Effective palliative nursing requires genuine ethical reasoning, not merely ethical compliance.

Principles-Based Ethics in Palliative Practice

The four-principles approach articulated by Beauchamp and Childress (2019) in their foundational text Principles of Biomedical Ethics — autonomy, beneficence, non-maleficence, and justice — provides the dominant analytical framework in Western bioethics and is the framework most commonly applied in palliative care ethical reasoning. Each principle carries specific implications for palliative nursing practice.

Autonomy — the patient’s right to self-determination — is the most frequently invoked principle in contemporary palliative care ethics. It grounds the right to refuse treatment (including life-sustaining treatment), the validity of advance decisions to refuse treatment (ADRTs), the right to choose the place of death, and the obligation of nurses to support rather than circumvent patient preferences. However, autonomy is not absolute: it applies only to competent patients making informed decisions, and its application requires careful assessment of decision-making capacity — a legal and clinical determination governed in England and Wales by the Mental Capacity Act 2005.

Beneficence — the obligation to act in the patient’s best interests — and non-maleficence — the obligation to avoid causing harm — are particularly complex in the end-of-life context because what constitutes “benefit” and “harm” is contestable and patient-specific. Continued cardiopulmonary resuscitation in a patient dying of metastatic cancer may meet a technical definition of life-prolongation while simultaneously constituting a profound harm — subjecting the patient to futile, undignified, and potentially painful intervention that forecloses a peaceful death. The concept of futile treatment — treatment that cannot achieve any of its physiological goals or that, even if physiologically effective, cannot provide a benefit the patient would want — is a legitimate basis for limiting treatment, though it remains contested and requires scrupulous documentation and multidisciplinary consensus.

Withholding and Withdrawing Treatment

The ethical and legal distinction between withholding and withdrawing treatment is frequently misunderstood by nursing students and qualified nurses alike. In UK law and mainstream bioethics, there is no morally or legally relevant distinction between the two — withdrawing a treatment that has been started is equivalent to not starting it in the first place, provided the decision is based on a determination that the treatment is not in the patient’s best interests. This is important clinically because the fear that withdrawing treatment (for example, discontinuing intravenous fluids in a dying patient) may be legally problematic can lead to the persistence of burdensome and futile interventions.

The principle of double effect — that an action with both good (intended) and bad (foreseen but unintended) effects may be permissible if the good effect is proportionate and the bad effect is not the means by which the good is achieved — is frequently invoked to justify the titration of opioids and sedatives at end of life. Its most common clinical application is in explaining why it is ethically permissible to administer morphine for severe pain even if the medication might (though evidence suggests rarely does) hasten death as a side effect. The principle is incorporated into the legal framework governing palliative sedation in the UK and is acknowledged in NMC guidance on medicine administration at end of life.

Do Not Attempt Cardiopulmonary Resuscitation (DNACPR)

Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decisions — and the related ReSPECT process (Recommended Summary Plan for Emergency Care and Treatment) increasingly replacing them in UK practice — represent one of the most ethically sensitive and emotionally charged conversations in palliative care. The DNACPR is not, as many patients and families believe, a withdrawal of care or a death sentence; it is a clinical decision that CPR in a particular patient’s circumstances would not be clinically effective, or would not be in line with their wishes. Communicating this distinction honestly and compassionately — while acknowledging the distress the conversation inevitably raises — is a critical palliative nursing communication skill.

The ReSPECT process, now widely adopted across UK NHS Trusts, improves on the DNACPR framework by creating a fuller picture of a patient’s treatment preferences and priorities, recorded in a portable document that can accompany patients across care settings. Nursing’s role in the ReSPECT process includes facilitating conversations with patients and families, ensuring the completed form is accessible to all care providers, and advocating for patients whose documented wishes are not being followed in acute care settings.

The demographics of death in contemporary Britain, Australia, and across the developed world reflect the increasing ethnic and cultural diversity of the living population. The assumption that all patients share the same cultural framework — the Western, largely Christian, individualistic approach to illness disclosure, decision-making, and the expression of grief — is not merely empirically false but clinically dangerous. Cultural competence in palliative nursing is not an optional supplementary skill; it is a fundamental clinical requirement.

Cultural variation in palliative care encompasses every dimension of the clinical encounter. Attitudes to disclosure of diagnosis and prognosis vary significantly across cultures: while Western bioethics generally presumes a duty to disclose directly to the patient, many South Asian, East Asian, and Southern European cultural traditions assign this role to the family, who may communicate the information according to their own judgement about what the patient can bear. Neither approach is inherently right or wrong, but the Western nurse who imposes direct disclosure on a patient from a family-disclosure culture may be causing harm in the name of autonomy, while the nurse who accepts family instructions to withhold information without establishing the patient’s own preferences may be complicit in a paternalistic deception.

Religious and cultural practices around the dying process and the body after death are equally diverse and carry profound significance for patients and families. Many Muslim patients will wish to have their bed oriented towards Mecca as death approaches, to hear recitation of the Qur’an, and to have only same-gender staff handle the body after death. Many Hindu families will want to perform specific rituals at the bedside and may wish to wash the body themselves. Jewish law (halacha) may prohibit the removal of life support equipment on certain days and requires prompt burial. Sikh patients may decline removal of the five Ks (articles of faith) even for clinical procedures. Buddhist patients may request that the body not be touched or moved for a period after death to allow consciousness to depart. These practices are not obstacles to good nursing care — they are expressions of profound human meaning-making at its most sacred moment, and nursing’s obligation is to facilitate them as fully as the clinical environment allows.

The LEARN model (Listen, Explain, Acknowledge, Recommend, Negotiate) and Campinha-Bacote’s Process of Cultural Competence in the Delivery of Health Care Services provide nursing frameworks for developing culturally competent practice. However, frameworks and tools are insufficient without the underlying commitment to genuine cultural humility — the recognition that cultural knowledge is always provisional, that no nurse can be an expert in all the cultural traditions represented in their patient population, and that the most important cultural skill is the ability to ask respectful, open questions of each patient about their individual preferences and values rather than applying generalised cultural stereotypes.

Advance Care Planning (ACP) is the process through which patients — ideally while they retain decision-making capacity — articulate their wishes, values, and preferences for future care in the context of anticipated deterioration. It encompasses informal conversations as well as formal legal documents, and its primary purpose is not to produce paperwork but to ensure that the patient’s authentic voice continues to guide clinical decision-making even when they can no longer speak for themselves.

The ACP process may produce several types of output. An Advance Statement of Wishes (or Values History) is a non-binding narrative document in which patients describe their values, what makes life worth living for them, their fears about the dying process, and their preferences about care. While it lacks legal force, it provides invaluable guidance to clinical decision-makers assessing best interests. An Advance Decision to Refuse Treatment (ADRT) — governed in England and Wales by the Mental Capacity Act 2005 — is a legally binding document in which a competent patient refuses specific medical treatments in specified future circumstances. When a valid and applicable ADRT exists, clinicians are legally obliged to respect it even if they believe following it is not in the patient’s best interests. A Lasting Power of Attorney (LPA) for Health and Welfare appoints a specific person to make health and care decisions on behalf of the patient if they lose capacity, with or without the authority to give or refuse consent to life-sustaining treatment.

The nurse’s role in ACP is multifaceted. It includes identifying patients who would benefit from ACP conversations — particularly those with progressive life-limiting conditions, those who have experienced acute deterioration, and those approaching the likely final year of life (identifiable using tools such as the Gold Standards Framework Prognostic Indicator Guide or the Supportive and Palliative Care Indicators Tool, SPICT). It includes facilitating ACP conversations with appropriate skill — exploring what matters to the patient, their fears, their understanding of their illness trajectory, and their preferences across multiple care domains (resuscitation, hospital admission, treatment escalation, preferred place of death, organ donation). It includes ensuring that completed ACP documents are appropriately recorded in the patient’s notes, communicated to all relevant care providers, and reviewed regularly as the patient’s condition evolves.

Research consistently demonstrates that ACP is associated with significantly improved concordance between patients’ stated preferences and the care they ultimately receive, reduced family decisional conflict, lower rates of aggressive end-of-life interventions, and higher rates of death in the patient’s preferred setting. Yet ACP uptake remains low — particularly among non-cancer populations, ethnic minority communities, older adults with cognitive impairment, and those from lower socioeconomic backgrounds. The nurse’s advocacy role includes identifying and addressing barriers to ACP engagement, including health literacy, language barriers, cultural attitudes to death discussion, and systemic failures in primary care to initiate ACP conversations sufficiently early in the illness trajectory.

Paediatric palliative care occupies a distinct and emotionally intense domain within the broader field. The death of a child — whether from a life-limiting genetic condition, a progressive neurological disorder, childhood cancer, or severe congenital abnormality — violates the fundamental assumption that children should outlive their parents, and generates a form and intensity of grief in families and caregivers that differs qualitatively from adult bereavement. Nursing practice in paediatric palliative care requires not only all the clinical competencies relevant to adult care but additional expertise in developmental psychology, family systems theory, sibling support, and the particular communication challenges of working with children at different stages of cognitive development.

Children’s palliative care as defined by the Together for Short Lives framework (UK) encompasses four categories of life-limiting and life-threatening conditions: (1) conditions for which curative treatment may be feasible but may fail (childhood cancer, cardiac conditions); (2) conditions where premature death is inevitable but long periods of intensive treatment aimed at prolonging quality life are possible (cystic fibrosis, muscular dystrophy); (3) progressive conditions without curative options where treatment is exclusively palliative from diagnosis (Batten disease, some metabolic disorders); and (4) conditions causing severe neurological disability with risk of early death from secondary complications (severe cerebral palsy, multiple disability). Each category carries different trajectories, different treatment challenges, and different family experiences.

The developmental appropriateness of communication is a central challenge in paediatric palliative care. Children’s understanding of death evolves through well-documented developmental stages: pre-school children tend to understand death as temporary and reversible; children aged approximately five to seven develop a more concrete but still incomplete understanding; and children from approximately nine years upward begin to develop an adult conceptual understanding of death as universal, irreversible, and inevitable. Communicating with children about their own illness, prognosis, and the possibility of death requires developmentally appropriate language, age-appropriate materials (books, drawings, play-based communication), careful assessment of the individual child’s existing understanding, and close collaboration with parents — who frequently, and understandably, wish to protect their child from distressing information but may need support to understand the benefits of honest, age-appropriate communication.

The care of siblings of dying or deceased children is a frequently overlooked dimension of paediatric palliative nursing. Siblings experience grief, confusion, guilt, and disruption of attachment — and their needs are often secondary to those of the dying child and the parents in terms of family and professional attention. Nursing advocacy for siblings includes ensuring they are included in age-appropriate communication about their brother or sister’s illness, facilitating visits to the hospice or hospital, providing bereavement support that acknowledges their distinct experience, and connecting families with specialist sibling bereavement services.

The historical association of palliative care with cancer is both understandable and increasingly problematic. Cancer is a disease with a relatively predictable terminal phase — a period of weeks to months of progressive decline that creates a recognisable end-of-life trajectory amenable to specialist palliative care intervention. However, the majority of deaths in developed countries now occur from causes other than cancer — principally organ failure (heart failure, chronic obstructive pulmonary disease, chronic kidney disease, liver failure), neurological conditions (dementia, motor neurone disease, Parkinson’s disease, multiple sclerosis), and frailty in the very elderly. These conditions have different trajectories, different symptom burdens, and different prognostic uncertainties, and their under-representation in specialist palliative care services represents a significant equity issue.

Heart Failure

Advanced heart failure — New York Heart Association (NYHA) Class III–IV — has a prognosis equivalent to or worse than many common cancers, with one-year mortality rates exceeding 50% in the most advanced stages. Yet patients with heart failure are significantly less likely to receive specialist palliative care input, to have advance care planning conversations, or to die in their preferred setting compared to cancer patients. The unpredictable trajectory of heart failure — characterised by repeated acute exacerbations interspersed with periods of relative stability, making prognosis genuinely difficult — contributes to this disparity, as does the tendency of cardiologists and heart failure nurses to focus on disease management and the availability of life-sustaining technologies (ICD, CRT, LVAD) that create complex treatment decisions at end of life. Palliative care input for advanced heart failure patients should include aggressive symptom management (dyspnoea, oedema, fatigue), advance care planning including discussion of device deactivation, and coordinated community support to reduce avoidable acute hospital admissions.

Dementia

Dementia presents palliative care nursing with its most complex challenges. The progressive cognitive decline of advanced dementia creates profound challenges for communication, consent, and the assessment of pain and other symptoms in a patient who may be entirely unable to self-report their experience. The application of validated observational pain assessment tools — the Abbey Pain Scale, the PAINAD (Pain Assessment in Advanced Dementia) Scale — is essential, as is the recognition that behavioural changes (agitation, vocalisation, facial grimacing, resistance to care) may be expressions of untreated pain rather than symptoms of dementia per se. The ethical complexity of decisions about artificial nutrition and hydration, antibiotics for intercurrent infections, hospital admission, and resuscitation in advanced dementia requires careful application of the Mental Capacity Act framework, sensitive family communication, and genuine best-interests decision-making rather than the default escalation that characterises much dementia care.

The question of when dementia has reached an advanced enough stage to warrant palliative care framing — and the consequent shift from a disease-management to a quality-of-life orientation — is clinically and ethically complex. The Global Deterioration Scale (GDS) and the FAST scale provide prognostic frameworks, with GDS Stage 7 (profound dementia: double incontinence, minimal verbal communication, loss of basic motor skills) generally regarded as the threshold for a palliative approach. However, many patients remain at earlier stages for years, and the initiation of palliative care conversations must balance prognostic honesty with the reality that precise prediction of survival in dementia remains very difficult.

Motor Neurone Disease (MND)

Motor Neurone Disease (ALS/MND) is in some respects the paradigmatic palliative care condition for non-cancer populations — a relentlessly progressive neurological disease with no curative treatment, a predictable clinical trajectory, and a devastating symptom burden (dysphagia, dysarthria, respiratory failure, paralysis) that demands proactive, expert, and deeply person-centred nursing care. The involvement of palliative care services from diagnosis rather than in the terminal phase reflects best practice for MND and is advocated in both NICE and NICE MND guidelines. The management of respiratory failure in MND — including the complex decision about non-invasive ventilation (NIV) and the timing and management of its withdrawal — is one of the most challenging clinical and ethical scenarios in palliative nursing practice.

The complexity and multidimensionality of palliative care makes genuine interprofessional collaboration not merely advantageous but essential. The WHO (2016) has explicitly identified interprofessional education and collaborative practice as critical components of the health system strengthening required to meet global palliative care needs. In specialist palliative care settings, the interdisciplinary team typically includes palliative care physicians and specialist palliative care nurses as its core, supported by social workers, hospital chaplains or spiritual care coordinators, clinical pharmacists, physiotherapists, occupational therapists, dietitians, and increasingly counsellors or psychologists with specialist training in end-of-life care.

The nurse’s role within this team is both clinically central and interpersonally catalytic. Nurses typically spend more time with dying patients and their families than any other professional — they are present at the bedside across shifts, they observe the gradual changes in clinical status, they receive the spontaneous disclosures that patients offer outside the formal consultation, and they are often the first professional to identify a change in a patient’s condition, preference, or emotional state that has implications for the team. This positional centrality makes the nurse the natural coordinator of interprofessional communication — the person most likely to recognise when a social work referral is needed, when spiritual care input would be valuable, when a chaplain should be called, or when a physiotherapy review is required for breathlessness management.

Effective interprofessional collaboration in palliative care requires structured communication mechanisms — regular multidisciplinary team (MDT) meetings focused on patient review, clear documentation of team decisions and rationale, and the cultural norm that all team members’ perspectives are heard and valued regardless of professional hierarchy. Psychological safety within the palliative care MDT — the team climate in which members feel safe to voice concerns, question decisions, and disclose their own distress without fear of reprisal — is particularly important in an environment where moral distress, ethical disagreement, and emotional burden are inherent features of daily work.

Compassion fatigue — also described as secondary traumatic stress or vicarious trauma — is the phenomenon by which exposure to the suffering of others erodes the capacity to feel empathy, progressively diminishing the quality and nature of the compassionate care that defines good palliative nursing. It is distinct from burnout (a broader syndrome of emotional exhaustion, depersonalisation, and reduced personal accomplishment caused by occupational stressors) and from moral distress (the psychological suffering caused by being required to act contrary to one’s ethical beliefs). While all three phenomena are prevalent in palliative care settings, compassion fatigue is particularly relevant to nursing in this specialty because of the sustained, intimate, and emotionally demanding nature of therapeutic relationships with dying patients and their families.

The concept of compassion fatigue was first described by nurse researcher Joinson (1992) in the context of emergency nursing, and was subsequently elaborated by Figley (1995) in his work on secondary traumatic stress in helpers. The Professional Quality of Life Scale (ProQOL) developed by Stamm (2010) provides a validated tool for measuring both compassion satisfaction and compassion fatigue in nursing populations, and has been widely used in palliative care research. Studies consistently demonstrate elevated rates of compassion fatigue in palliative care and oncology nurses compared to nursing populations in other specialties, and identify a range of risk factors: high caseloads, inadequate supervision and debriefing, insufficient team support, a personal history of unresolved loss, poor work-life boundary management, and institutional cultures that implicitly pathologise or discourage the expression of distress by professional carers.

The implications for nursing leadership and institutional practice are significant. Clinical supervision — structured, regular, protected time in which nurses can reflect on their clinical practice with a trained supervisor — has the strongest evidence base for supporting the psychological wellbeing of palliative care nurses and reducing compassion fatigue. Regular team debriefs following particularly difficult deaths or complex cases, adequate staffing levels that prevent the chronic exposure burden associated with high patient-to-nurse ratios, and explicit acknowledgement by ward and service managers that working with dying patients is emotionally demanding — all these represent institutional obligations, not merely individual coping strategies.

At the individual level, the development of what Halifax (2012) calls compassionate presence — the ability to be fully present with a patient’s suffering without losing oneself in it — is a professional skill that can be cultivated. It requires the nurse to develop clear psychological boundaries (without emotional distance), to engage in regular reflective practice (formally in clinical supervision, informally in writing or peer discussion), to develop a repertoire of self-care strategies that are genuinely restorative rather than merely escapist, and to resist the professional culture of self-sacrifice that valorises nursing work performed at the expense of the nurse’s own health and wellbeing.

Palliative care policy has evolved significantly since the first national strategies began to appear in the early 2000s. The quality of end-of-life care available to any given patient is shaped not only by the clinical competence of their nursing and medical team but by the policy infrastructure within which that team operates — the funding mechanisms, the service configurations, the regulatory standards, and the professional education requirements that collectively determine whether good palliative care is accessible, equitable, and sustainable.

United Kingdom

The UK has one of the most developed palliative care policy frameworks in the world, though significant inequities remain. The foundational national strategy — End of Life Care Strategy: Promoting High Quality Care for All Adults at the End of Life (DH, 2008) — established a national framework for improving end-of-life care across all settings (hospital, hospice, care home, and community), organised around six quality markers: open honest communication; involvement of dying people and those important to them in decisions; assessment and care planning; delivery of high quality services; care of the dying person; care after death. Subsequent policy documents — including One Chance to Get It Right (Leadership Alliance for the Care of Dying People, 2014), developed in response to the controversy surrounding the Liverpool Care Pathway, and Ambitions for Palliative and End of Life Care (National Palliative and End of Life Care Partnership, 2015, refreshed 2021) — have refined and reinforced this framework.

The NHS Long Term Plan (2019) includes specific commitments to improving access to personalised care and to ensuring that people approaching end of life have their needs identified and a personalised care and support plan in place. The NICE Quality Standard QS13 (2011, updated 2017) establishes explicit quality statements for end-of-life care including the provision of advance care planning support, spiritual care assessment, and family bereavement support. The Care Quality Commission (CQC) uses these standards in its inspection framework for care homes, hospices, and community services providing end-of-life care.

The National Programme for Palliative Care implemented across the devolved nations of the UK — including Living and Dying Well (Scotland, 2008), Palliative Care Planning Group Wales (2008), and Living Matters Dying Matters (Northern Ireland, 2010) — reflects the constitutional diversity of UK health policy while maintaining convergence on core values and standards. The voluntary sector, and the hospice movement in particular, occupies an unusual position in UK palliative care — providing approximately one-third of specialist palliative care beds while relying significantly on charitable fundraising, a funding model with inherent sustainability challenges.

Australia

Australia’s palliative care policy framework is primarily expressed through the National Palliative Care Strategy (2018), developed by the Commonwealth Department of Health in collaboration with state and territory governments, the hospice and palliative care sector, and consumer representatives. The Strategy is organised around three goals — awareness (Australians understand that palliative care is good care and is available to all who need it); access (Australians have access to quality palliative care when and where they need it); and quality (palliative care is provided in accordance with evidence-based best practice) — supported by specific actions, responsibilities, and indicators.

The Palliative Care Australia (PCA) national standards — most recently updated in the National Palliative Care Standards 5th Edition (2018) — provide the benchmark framework for service quality across Australian palliative care settings. The standards are organised around three domains: person-centred care, teamwork and partnerships, and organisational commitment and leadership. Importantly, the 5th Edition introduced explicit standards around cultural safety for Aboriginal and Torres Strait Islander peoples, reflecting the particular obligations of Australian healthcare services in this area.

Global Frameworks

At the global level, the World Health Assembly Resolution 67.19 (2014) — “Strengthening of palliative care as a component of comprehensive care throughout the life course” — represents the most significant international policy commitment to palliative care, calling on member states to integrate palliative care into national health systems and to ensure access to essential palliative medicines including opioid analgesics. The Lancet Commission on Palliative Care and Pain Relief (2017), which estimated that 61 million people experience serious health-related suffering worldwide that could be addressed by palliative care interventions, provided the most comprehensive quantification of the global burden of undertreated suffering and generated specific recommendations for countries at different stages of health system development.

Palliative and end-of-life nursing is, as this essay has attempted to demonstrate, a domain of exceptional breadth, depth, and complexity. It demands of the nurse simultaneously the most advanced clinical skills — in pain and symptom management, pharmacology, and clinical assessment — and the most subtle human capacities: the ability to be present with suffering without fleeing from it, to communicate honestly without causing unnecessary harm, to respect the diversity of human approaches to dying without compromising the integrity of professional standards, and to care for families in their most acute grief while maintaining the boundaries necessary for sustainable professional practice.

The essay has traced the historical development of the modern palliative care movement from Cicely Saunders’ foundational insight about total pain through to the contemporary global policy landscape. It has examined the core principles of palliative nursing practice and their clinical implications; the evidence base for pharmacological and non-pharmacological symptom management; the psychological, spiritual, and existential dimensions of the dying person’s experience; the family as a co-recipient of palliative care; the communication skills demanded by honest, compassionate, culturally responsive end-of-life care; the ethical and legal frameworks that govern difficult clinical decisions; the cultural competencies required to provide equitable care across diverse patient populations; the nurse’s role in advance care planning; the particular challenges of paediatric palliative care and non-cancer populations; the importance of interprofessional collaboration; the professional and institutional responsibility to address compassion fatigue; and the policy frameworks that enable or constrain the delivery of good end-of-life care at the system level.

What emerges from this analysis is a picture of palliative nursing as a discipline that requires continuous intellectual development, genuine personal and professional courage, and the cultivation of what can only be called wisdom — the integrated practical intelligence that allows the nurse to respond to the unique needs of each dying patient and each grieving family with skill, compassion, and integrity. It is a discipline that exacts a significant personal cost. But it also offers what many palliative care nurses describe as a remarkable privilege: the opportunity to accompany human beings through the most profound experience of their lives, to witness the extraordinary resilience and love that dying frequently reveals in individuals and families, and to make a difference that is — in the most literal sense — irreplaceable.

Good palliative care is not, in the end, a technical achievement. It is a human one. And that is precisely why nursing, with its irreducible commitment to the whole person, its sustained presence, and its integration of clinical excellence with human relationship, is — and will always be — at its very heart.

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