End-of-life care for patients facing a terminal diagnosis aims to alleviate suffering and uphold patient dignity, respecting their wishes throughout the process. Physicians navigating palliative care scenarios often encounter complex ethical dilemmas. These decisions extend beyond the individual, impacting families and society, necessitating a framework that protects the rights and respects the values of all involved in ethical decision-making. A strong understanding of biomedical ethics is crucial for healthcare professionals to effectively address these challenges in palliative care scenarios, especially when a terminal diagnosis is involved. Common ethical challenges arise in situations concerning resuscitation, mechanical ventilation, artificial nutrition and hydration, terminal sedation, treatment withdrawal, and the nuanced areas of euthanasia and physician-assisted suicide. Navigating these complexities requires a grounding in key ethical principles to guide clinical practice in palliative care.
Introduction
Modern medicine has significantly extended life expectancy, altering our perception of death and dying. While many advanced treatments manage chronic conditions, interventions like artificial nutrition and respiratory support can prolong life without necessarily curing underlying illnesses.[1],[2] End-of-life care, therefore, has become an increasingly vital aspect of medical practice. This journey begins with a terminal diagnosis and encompasses the patient’s desire for a dignified death, extending through the bereavement period for loved ones.[2] Death is an intrinsic part of life, yet for many at life’s end, unnecessary suffering prevails. Families, close friends, and caregivers are profoundly affected, playing essential roles before, during, and after the death of a loved one in palliative care scenarios.[3]
Upon receiving news of a terminal diagnosis, families often experience significant stress, manifesting as anger, depression, conflict, and even physical symptoms.[3],[4] Family members are often primary caregivers, and witnessing the suffering of a terminally ill loved one can evoke feelings of helplessness, guilt, and anger.[4]
Ethically, the patient holds primary decision-making power regarding treatment limitations, especially when treatments prolong life without offering a cure. However, when a patient loses decision-making capacity, the responsibility shifts to family, healthcare proxies, or physicians to determine the appropriate course of palliative care.[4],[5] This responsibility is amplified in palliative care scenarios associated with terminal diagnosis. Family members grappling with the emotional burden of a terminal illness may find decision-making challenging. Uncertainty about a loved one’s wishes regarding end-of-life care can further intensify anxiety and stress. Disagreements among family members about care preferences can also arise, with some advocating for aggressive life-prolonging measures while others struggle to make decisions, potentially deferring to medical staff. These complex family dynamics place physicians in ethically demanding situations within palliative care scenarios.[3]–[6]
Palliative care for terminally ill patients focuses on alleviating suffering, optimizing quality of life until death, and ensuring a comfortable passing. Achieving these goals is often ethically complex. Physicians, patients, and families must navigate difficult choices about life-prolonging treatments versus allowing a natural death, leading to ethical dilemmas in palliative care, particularly in terminal diagnosis scenarios.[1]–[4] A thorough understanding of biomedical ethics, encompassing principles like autonomy, beneficence, non-maleficence, fidelity, and justice, is paramount for healthcare professionals and patients alike in navigating these challenges within palliative care.[5],[6]
This article explores the application of ethical principles in palliative care scenarios, focusing on the unique challenges presented by a terminal diagnosis.
Core Ethical Principles in Palliative Care
Four fundamental ethical principles—autonomy, beneficence, non-maleficence, and justice—are universally recognized in healthcare. While their interpretation and application can vary across cultures, these principles form a bedrock for ethical decision-making in palliative care worldwide. This section highlights the universally accepted aspects of these principles, acknowledging that cultural and legal contexts can further influence their application, which may be explored separately.
Autonomy, the right to self-determination, is paramount. Every individual has the right to make informed decisions about their healthcare and to have those decisions respected. Upholding patient autonomy is a cornerstone of medical ethics, particularly critical in palliative care settings.[4],[6] This principle compels physicians to protect patient self-determination, even for those who have lost decision-making capacity, often achieved through advance directives (ADs).[4],[6]
A doctor discussing advance care planning with a patient and their family, emphasizing the importance of autonomy in end-of-life decisions within palliative care.
ADs, rooted in patient autonomy, are instructions regarding future medical care should an individual become unable to communicate or make decisions. These can be oral or written and typically include living wills, healthcare proxies, and Do Not Resuscitate (DNR) orders.[3],[4],[7],[8] A living will is a formal document outlining a person’s preferences for medical interventions, such as feeding tubes, in end-of-life care. It becomes effective when the individual loses decision-making ability. A healthcare proxy (or agent, or power of attorney for healthcare) is a person designated by the patient to make healthcare decisions on their behalf when they are incapacitated. This proxy acts as the patient’s legal representative in severe medical situations.[4],[7],[8] The proxy’s responsibility is to act according to the patient’s known wishes and values, not their own preferences.[7],[9]
Until the age of 18, parents or legal guardians typically serve as healthcare proxies. After 18, individuals can legally appoint their own proxy, who can be a family member, friend, or other trusted person. Proxies make decisions about treatments, procedures, and life support, always prioritizing the patient’s likely wishes, even if differing from their own or others’ desires.[7],[8],[10]
In end-of-life care, the patient’s wishes are paramount. If incapacitated, decisions are guided by ADs. The healthcare proxy is next in the decision-making hierarchy. Absent ADs or a proxy, family members assume this role. If families cannot decide, the healthcare team must make the necessary decisions.[7],[8],[10]
ADs ensure patients receive desired care and ease the decision-making burden for families. They also help prevent unwanted, costly, and invasive treatments. Research indicates ADs improve end-of-life care quality and reduce care burdens without increasing mortality.[7],[11]
Many countries legally guarantee the right to self-determination. This right necessitates informed consent for medical interventions and treatments. Patients have the right to demand treatment termination (e.g., discontinuing life support) and to refuse treatment altogether, rights inherent to the individual.[4],[5] ADs can be updated annually or before hospitalizations.[9]
While respecting autonomy is crucial, it has limitations. Patient decisions should not cause harm. Healthcare providers must balance respecting autonomy with their duty to benefit patients and avoid harm.[1]–[5],[9]
Beneficence requires physicians to advocate for interventions that best serve the patient’s interests. Often, patients’ end-of-life wishes are not formally documented, leaving healthcare providers and families unaware of their preferences.[2],[9],[10] In cases of patient incapacity or undocumented wishes, end-of-life decisions are made by the physician in consultation with the patient (if possible), family, or healthcare proxy.[3]–[6] Beneficence, in this context, compels physicians to champion approaches that deliver the best possible care for the dying patient.[3]
Non-maleficence, “first, do no harm,” is a fundamental principle of medical ethics. While medical interventions may cause discomfort or harm, non-maleficence concerns the moral justification for such harm. Harm is justifiable if the intervention’s benefits outweigh the harm and is not intended to cause harm.[5]–[7],[12]
Upholding beneficence and non-maleficence requires healthcare professionals to understand their roles and responsibilities in palliative care scenarios, particularly within the context of a terminal diagnosis.[4],[5]
Justice, in healthcare ethics, concerns the fair distribution of health resources and impartiality in service delivery.[5]–[7],[12] Limited medical resources necessitate fair and equitable allocation. Evaluating the use of advanced therapies to avoid unnecessary resource consumption is crucial. Healthcare providers have an ethical duty to advocate for fair and appropriate treatment for end-of-life patients, achievable through education and promoting improved treatment outcomes.[4]–[7]
Fidelity demands honesty from physicians regarding a patient’s prognosis and potential disease consequences.[5]–[7],[12] Truthfulness is fundamental to respecting autonomy. Most patients desire full knowledge of their condition, though this may lessen as death approaches. Some may prefer less information.[2],[5] Physicians must skillfully gauge patients’ information preferences and provide accurate information sensitively and honestly. Effective patient-centered communication skills are essential for understanding and meeting patient needs.[5],[13]
Healthcare professionals, especially physicians, should provide comprehensive information about a patient’s condition when appropriate, including details about advanced treatments available in palliative care.[4],[13] This includes explaining the benefits, limitations, and disadvantages of these treatments. Even with patient autonomy in treatment choices, physicians must explain the outcomes of all therapeutic options.[2]–[5] If a patient insists on a non-beneficial or life-prolonging treatment, the physician can withdraw care, explaining the treatment’s futility, potential harm, and resource implications. While physicians are obligated to protect life, this should not be conflated with using unnecessary resources or causing further harm through futile treatments.[1],[4],[5] Patient well-being is also determined by their subjective judgment. Medically futile treatments are those highly unlikely to benefit the patient.[9]
Medical futility is defined as clinical action that serves no useful purpose in achieving a specified patient goal.[14] Futile care offers no hope of patient benefit.[4] Generally, patients should be involved in futility discussions, though this may be unfavorable in rare instances.[2],[9] Futile, expensive end-of-life treatments increase healthcare costs and exacerbate healthcare inequality. Advanced technologies do not guarantee cures and can sometimes harm rather than help. Physicians must balance patient or proxy autonomy with potential treatment harms and resource implications. Physicians are not obligated to provide futile treatments.[3],[9],[10],[14]
Decision-Making in Palliative Care Scenarios with Terminal Diagnosis
In palliative care, especially with a terminal diagnosis, deciding between life-prolonging interventions and comfort care can be profoundly challenging for physicians, patients, families, and healthcare proxies. Common difficult decision-making scenarios in end-of-life care include:[9]
- Cardiopulmonary Resuscitation (CPR)
- Mechanical Ventilation (MV), Extracorporeal Membrane Oxygenation (ECMO), and Mechanical Circulatory Support (MCS)
- Artificial Nutrition and Hydration (ANH)
- Terminal Sedation
- Withholding and Withdrawing Treatment
- Euthanasia and Physician-Assisted Suicide (PAS)
While CPR is valuable for heart attacks and trauma, it may be inappropriate for dying patients, potentially causing complications and diminished quality of life. For some terminally ill individuals, CPR is unwanted. Deciding against CPR can be difficult for healthcare personnel. CPR decisions depend on patient preferences, success likelihood, risks, and perceived benefits.[4],[12],[15] A competent patient can refuse CPR via a DNR order. Even with a DNR, families may request CPR, but if the patient is competent, their decision prevails. Physicians must ascertain CPR preferences for at-risk patients. DNR orders are considered for patients:[9],[10],[15],[16]
- Unlikely to benefit from CPR
- For whom CPR would cause permanent damage or unconsciousness
- With poor pre-CPR quality of life and low recovery prospects
Approximately 75% of dying patients experience dyspnea. Mechanical ventilation in palliative care aims not to prolong life but to alleviate anxiety, improve sleep, and enhance comfort for eating.[4],[9]
MV, ECMO, and MCS are supportive therapies.[17]–[20] Decisions to deactivate these devices are similar. Autonomy is crucial in considering treatment refusal and life-ending interventions. If these supports offer no benefit, fail to meet goals, yield suboptimal outcomes, or compromise quality of life according to patient/family wishes, they can be terminated. The timing should align with family needs.[17]–[20]
Nutrition and hydration are fundamental human needs. ANH provides sustenance to patients who are unconscious or unable to swallow.[9],[21],[22]
Artificial nutrition can be delivered via enteral or parenteral feeding. ANH decisions are emotionally and ethically complex in end-of-life care. Many medical associations consider feeding and hydration as basic palliative care needs that should be met for terminal patients.[9],[12],[16],[23] However, the US Supreme Court in 1990 recognized ANH as no different from other life-sustaining treatments, allowing competent adults to refuse it, even if it hastens death. ANH may benefit patients with conditions like short bowel syndrome or bulbar amyotrophic lateral sclerosis, or in acute disease phases like stroke. It can improve nutritional status in malnourished patients. However, evidence for ANH benefits is limited, and it carries risks like aspiration pneumonia and gastrointestinal discomfort.[23],[24]
In advanced cancer patients, dehydration can cause fatigue, delirium, and myoclonus, impairing quality of life, and potentially causing agitation from opioid metabolite accumulation. However, parenteral hydration benefits in these patients are debated. A study by Bruera et al. found no improvement in symptoms, quality of life, or survival with hydration in hospice cancer patients compared to placebo.[25] Johnston et al.’s study on PEG tubes showed 43% of patients died within a week post-insertion, with respiratory disease being the main cause in 70% of these deaths. Experts deemed PEG tube insertion futile in only 19% of patients.[26]
Therefore, ANH decisions require detailed explanation of benefits and harms to the patient or decision-makers. If a patient is incompetent, their proxy can refuse ANH on their behalf.[9],[21]–[23]
Terminal sedation, usually a last resort in palliative care, aims to relieve intractable suffering when death is imminent. Sedatives are used, and while concerns exist about treating unconscious patients, the goal is pain relief, not hastening death. Four criteria guide terminal sedation assessment:[5],[9]
- Terminal illness present.
- Severe, treatment-resistant, and intolerable symptoms.
- DNR order in place.
- Imminent death (hours to days).
Some medical interventions in palliative care can prolong life. However, decisions about initiating, continuing, or withdrawing these treatments are common ethical dilemmas.[2],[9] Withholding treatment means not starting or escalating life-sustaining interventions, while withdrawing means stopping an ongoing intervention.[21],[22]
Decisions to withhold or withdraw treatment are ethically challenging. If patient and physician agree on the futility of an intervention, withholding or withdrawing is appropriate. However, physicians must manage these discussions sensitively, using patient-centered communication skills. Respect for patient autonomy to continue treatment is questioned when it causes significant harm, resource inequity, or illegal actions for the physician.[23] Legal opinions in most countries suggest patients cannot demand non-beneficial treatment, and physicians should not preserve life at all costs. Doubt should favor life preservation. Healthcare professionals need ethical frameworks for withholding/withdrawing treatment decisions, considering law, guidelines, evidence, and resources.[14],[22],[23],[27]
Physicians must understand patient capacity, beliefs, preferences, and clinical condition in palliative care scenarios.[2],[9]
Euthanasia and PAS have been debated for decades in terminal care, with ongoing ethical and legal controversies.[28]
Euthanasia is active (administering medication to intentionally end life) or passive (withholding life-prolonging treatment). Active euthanasia requires explicit patient request and is typically physician-administered. Passive euthanasia involves a patient with an incurable disease choosing to forgo life-prolonging treatments like ANH. PAS involves a physician providing medication for the patient to self-administer to end their life, upon explicit request.[28]–[30]
Globally, laws on euthanasia and PAS vary widely, from legal acceptance to criminal offenses. In legal jurisdictions, physicians may still refuse to participate.[28]
Active euthanasia is legal in Belgium, Netherlands, Luxembourg, Canada, and Colombia, with varying regulations. Passive euthanasia is legal in 12 countries including those previously mentioned, plus Switzerland, Germany, Austria, Norway, Sweden, Spain, Mexico, Argentina, and Chile. PAS is legal in seven countries: Belgium, Netherlands, Luxembourg, Switzerland, Germany, Finland, Canada, and Japan. In the US, active euthanasia is illegal, but PAS is legal in 10 states: Oregon, Washington, Vermont, California, Colorado, Washington D.C., Hawaii, New Jersey, Maine, and Montana.[30]–[32] Age restrictions vary, with no age limit in Belgium for euthanasia requests and a minimum age of 12 in the Netherlands under specific conditions.[30],[31]
Ethical Decision-Making Across Healthcare Settings in Palliative Care
Ethical principle application in palliative care can differ across healthcare settings.
Emergency Departments (EDs) serve diverse patient populations, including those with terminal and serious illnesses alongside treatable conditions. EDs stabilize urgent issues and refer patients to appropriate services, not designed for dignified deaths.[33],[34] However, families may bring dying patients to the ED when home care becomes unmanageable.[33]
ED decisions are often time-sensitive. Emergency physicians face ethical challenges in end-of-life care, particularly regarding resuscitation and life support for incapacitated patients.[33],[34]
EDs prioritize life support unless ADs specify otherwise. The Royal College of Emergency Medicine recommends treatments that maximize overall benefit and minimize future restrictions, emphasizing patient and family involvement in end-of-life decisions.[35]
Patient decisions are guided by ADs or healthcare proxies if available. Absent these, families decide. Disagreements between physicians and families may occur, in which case ethics committees or legal frameworks guide decisions.[34],[35]
Pediatric EDs primarily treat children lacking decision-making capacity. Decisions prioritize the child’s best interests, weighing treatment benefits, burdens, and risks for optimal outcomes.[36]–[39]
Parents or legal guardians are typically legal and medical decision-makers for children. While agreement usually prevails, conflicts can arise. Physicians can consult ethics committees or courts if parental decisions are deemed not in the child’s best interest.[36]–[39]
Most dying children receive hospital care, often in pediatric ICUs. End-of-life decisions adhere to ethical principles and relevant laws.[36],[37]
Children under 18 are legally considered incompetent to make healthcare decisions, with exceptions for emancipated minors in some regions. Children over six should be informed about end-of-life decisions, and their preferences considered, even if they cannot make final decisions.[35]–[39]
Pediatricians face ethical dilemmas in end-of-life care.[37],[40] Disagreements can arise regarding pain management, sedation, and withdrawal of interventions. Effective communication within the medical team and with families is crucial for resolving such situations.[38] Clear, understandable information tailored to the child’s circumstances empowers families to assess the situation. Sufficient time and opportunity for discussion aids in resolving difficult end-of-life care decisions.[39]–[41]
Parental decisions are not absolute. Physicians can seek ethics committee review if concerned about potential harm to the child from parental decisions. Court intervention is a last resort if family decisions are deemed harmful by the medical team.[15],[37],[38]
The elderly population is rapidly growing, with increased prevalence of chronic, life-limiting diseases and cognitive impairments like dementia.[42]–[44]
Ethical issues in end-of-life care for the elderly revolve around applying the four core ethical principles. The goal is to enhance quality of life, help cope with illness, disability, death, and ensure a dignified dying process, guided by these principles.[41]–[44]
Physicians caring for terminally ill elderly patients should discuss care goals with patients and family surrogates. These discussions inform care preferences and desired death experiences, encouraging advance care planning.[4],[41]–[44]
ICU ethical decision-making has unique aspects. Distinguishing between treatable and terminal patients is crucial. For dying ICU patients, care should be re-evaluated post-emergency stabilization, transitioning to shared decision-making between doctors and patient/proxy.[45]–[48]
Empowering patient and family participation is vital, facilitated by clear explanations of the patient’s condition, interventions, and outcomes. Autonomy aligns with informed consent requirements.[45]–[48]
ICU physicians face ethical dilemmas in end-of-life care, guided by autonomy, beneficence, non-maleficence, and justice.[41] Patient autonomy is primary, but many ICU patients lack decision-making capacity. ADs or proxies then guide decisions. Absent these, families decide. Family meetings can resolve disagreements.[46]–[48]
Physician concerns about family decisions can be addressed through institutional ethics committees. Ethical consultations have been shown to effectively resolve conflicts.[48],[49]
Palliative Care and Hospice: Dedicated Approaches to End-of-Life
Most individuals prefer dying at home.[50] However, home-based end-of-life care isn’t always feasible. Palliative care and hospice programs have emerged to address this gap.
The WHO defines palliative care as improving quality of life for patients and families facing life-threatening illness by preventing and relieving suffering through early identification, assessment, and treatment of pain and other physical, psychosocial, and spiritual problems.[51]
Palliative care is delivered by interdisciplinary teams. The American Medical Institute emphasizes that all physicians caring for terminally ill patients should possess basic palliative care skills, including communication, collaboration, and symptom management.[52]
Palliative care, including hospice, aims to provide the best possible quality of life for individuals of all ages facing advanced serious illness or approaching death. The core goal is to prevent and relieve suffering, enhancing quality of life for both patient and family.[43],[52] Symptom control for pain, dyspnea, nausea, insomnia, anxiety, and depression is crucial, addressed in collaboration with patients and families.[53],[54]
A hospice nurse providing compassionate care to a terminally ill patient at home, illustrating the holistic approach of palliative care in a home setting.
Psychological, spiritual, and social factors significantly influence symptom perception. Palliative care appropriately addresses psychosocial distress, spiritual concerns, and practical needs based on patient and family preferences.[55] Care plans are collaboratively determined, goal-oriented, and regularly reviewed by the multidisciplinary team.[53],[55]
Hospice is a vital component of palliative care, specifically addressing the needs of patients with limited life expectancy and their families. Hospice focuses on symptom control and psychological and spiritual support for dying patients and their families.[43],[52] Hospice teams strive for maximum patient comfort at life’s end. Hospice can be provided in various settings, including homes, nursing homes, hospitals, and dedicated hospice facilities.[55],[56] Hospice teams also support primary caregivers and families, offering emotional, spiritual, social, nutritional, and bereavement counseling.[55],[57]
Studies demonstrate that palliative care improves quality of life, reduces acute healthcare utilization, and lessens symptom burden compared to routine care.[58] Meta-analyses also show hospice care enhances quality of life and potentially extends life expectancy for terminally ill patients.[59] Therefore, all healthcare providers caring for terminal patients need foundational palliative care skills. Universal health insurance coverage for hospice care is essential to ensure broad access.
All ethical principles apply to palliative care, with beneficence and non-maleficence being particularly prominent. Beneficence emphasizes symptom relief to improve quality of life, while non-maleficence focuses on alleviating harmful symptoms.[56]
End-of-life decisions (CPR, MV, ANH, terminal sedation, treatment withdrawal) within palliative care require careful ethical consideration. Applying ethical principles in palliative decision-making is essential for ensuring a comfortable end-of-life experience for patients.[53],[56]
Conclusion
End-of-life care aims to minimize suffering and respect patient wishes in terminal diagnosis scenarios. Physicians encounter numerous ethical challenges in this context. Given the broad impact of these decisions, protecting the rights and dignity of all stakeholders is paramount. Open communication and shared decision-making among healthcare providers, patients, and families are essential to preempt many ethical dilemmas in palliative care.
Limitations
Cultural beliefs, traditions, and legal frameworks significantly influence the application of ethical principles in diverse societies. This article discussed universal ethical principles in end-of-life care, but did not delve into specific societal variations. Furthermore, the roles of various healthcare professionals in end-of-life care were not comprehensively explored.
Footnotes
Declaration of conflicting interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding: The author(s) received no financial support for the research, authorship, and/or publication of this article.
ORCID iD: Melahat Akdeniz https://orcid.org/0000-0003-0792-8701
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