End of Life Decision Making and Ethical Principles and Ethical and Ethical Principles of Bioethics
Challenges and Dilemmas in End-of-Life Care
Evolution of Medical Focus: Significant advances in technology have caused a shift in medical focus from "care" to "cure."
Fundamental Questions Raised by Technology: * Can anything be done? What is the practical definition of doing "everything possible"? * Is death accepted as a normal part of the life cycle, or should it be resisted as an end? * Distinction between prolonging life versus simply extending the physical functioning of a biological being. * Ethical utilization: Should every available technology be used simply because it exists?
Quality of Life vs. Physical Existence: * Health care providers must distinguish if physical existence is equivalent to actually "living." * How medical interventions relate to the overall quality of life for the patient.
Decision-Making Authority: Decisions involve multiple stakeholders with potentially conflicting views, including: * Health care providers. * The patients themselves. * Family members. * The court system.
Decision Metrics: Determining how to decide, for whom the decision is being made, and the appropriate limits on the use of technology.
The Role of Health Care Providers
Changing Demographics: Society is facing longer life expectancies, leading to: * An increase in chronic diseases. * Complex co-morbidities that complicate clinical situations. * Increased demand for health care services paired with limited resources.
Nursing Involvement: Since most patients die within the hospital setting and the majority of nurses work in hospitals, nurse involvement in end-of-life issues is inevitable.
Emergent Dilemmas: These systemic factors ensure that many ethical dilemmas and issues will continue to rise in clinical practice.
Decision-Making in Prolonging Life
Condition Thresholds: When a patient is dying and there is no expected improvement in their condition, decisions must involve starting, stopping, or withdrawing life-sustaining measures.
Life-Sustaining Measures Categories: * Aggressive Measures: Mechanical ventilation, Surgery, CPR (), Hemodialysis, and Chemotherapy. * Less Aggressive Measures: Antibiotics, Blood transfusions, Intravenous/gastric tube hydration, and Cardiac arrhythmic drugs.
Historical Context of Decision Making: * Past (Pre-1980s): Doctors were viewed as the exclusive "experts." Decisions were often imposed without consulting patients or families. * Concerns with Historical Paternalism: Doctors sometimes used aggressive measures regardless of the quality of life, the hopelessness of the case, or the suffering inflicted upon the family and patient. * Shift in the 1980s and 1990s: A transition toward partnership began. Society started questioning the cost of medical resources versus the benefits for patients in the last stages of life.
Modern Approach: Emphasis on the right to "die with dignity." Patients and families now demand participation in decisions, with weight given to their rights, values, culture, religion, and social norms.
Goals and Planning for End-of-Life Care
Collaborative Goal Setting: Interventions must be discussed between patients, families, and professionals to ensure they align with patient preferences.
Shift in Focus: Many prefer goals centered on comfort from pain and suffering and the quality of the dying process rather than the mere prolongation of life.
Key Planning Questions: * Do you want "everything possible" done, and what does that specifically mean to you? * What should happen if the patient arrests? * Should the patient be force-fed or hydrated if they stop eating?
Internal and External Barriers: * Failure to acknowledge the biological limits of medicine. * Inappropriate use of aggressive curative treatments. * Difficulties with clinical prognostication.
Patient/Family Perspectives on Aggressive Treatment: Individuals may demand aggressive treatment due to: * Belief that technology can save their loved one. * Difficulty in accepting that death is imminent. * Distrust of the health care system or providers to tell the full truth regarding interventions. * A simple, fundamental desire to stay alive.
Medical Futility and CPR Statistics
Futile Treatment Protocols: Professionals often find it difficult to convey when interventions are no longer beneficial. A helpful strategy is agreeing to a specific time-limited trial of aggressive treatment. If no improvement is seen or the patient deteriorates, interventions are deemed futile and stopped.
Economic Ethics: The consideration of cost in care availability must be legitimized. Cost is not just a financial issue but an ethical one; characterizing ethical physicians as being in opposition to "amoral bean-counters" regarding cost is a false dichotomy.
CPR Considerations: * Original Intent: CPR was initially designed to revive a healthy person's heart after sudden arrest. * Expansion: It has been expanded to include all persons regardless of health status based on the principle of justice. * Administrative Uniqueness: CPR is the only hospital intervention carried out without a prior written medical order. * Success Rates: Less than of patients with cancer or heart, lung, or liver disease survive for six months post-CPR. * Physical Risks: CPR involves potential broken ribs and damage to the trachea.
Financial Impact of CPR: * Cost for a patient who arrests in the hospital: approximately . * Cost for a survivor of an arrest (hospitalization and rehabilitation): approximately .
Predictors of CPR Failure (Meta-analysis of researches): * Sepsis on the day prior to the event. * Serum creatinine levels > 1.5\,mg/dL. * Metastatic cancer. * Dementia. * Dependent status. * Historical data included "Being African American," though this risk factor has since been challenged.
Do Not Resuscitate (DNR) Directives
Definition: A directive stating that "in the event of a cardiac arrest, doctors, nurses, and other health personnel are not to perform basic or advanced life support."
Purpose: Written by doctors to prevent CPR abuses in cases with a hopeless prognosis.
Essential Elements of a DNR: * A statement of organizational policy (CPR is initiated unless a specific order exists to withhold it). * A statement from the patient regarding their specific desires. * A description of the medical condition justifying the order. * A definition of the role of health care providers.
Contextual Meaning - Case Example: A patient with a -month life expectancy has a DNR but develops respiratory arrest due to an allergic food reaction. * Ethical question: Since the arrest is reversible and not related to the hopeless medical condition, should CPR be performed despite the DNR?
Cultural, Religious, and Legal Acceptance of DNR
Islamic Law: Permits the withdrawal of futile treatment and life support from terminally ill patients to allow death to take its natural course. In Islam, DNR is considered Mubah (permitted) in certain situations.
UAE Federal Law No. 4 of 2016: * Permits medical practitioners to allow natural death by not performing CPR if conditions are met. * Conditions for UAE DNR: 1. Confirmation the patient has an incurable disease. 2. Declaration that all treatments have been pursued with no ease brought to the patient. 3. The attending physician advises against CPR. 4. At least doctors support the patient's position to refrain from treatment.
Problems and Misunderstandings with DNR
1. Quality of Life Criterion: * Defined as the "capacity or potential capacity to have human relationships/pursue human purposes/live life independently." * Perception Gap Study: Research shows health care workers view severe injuries more negatively than patients. Only of emergency workers imagined being glad to be alive with quadriplegia, compared to of actual spinal cord injury (SCI) patients who were glad to be alive. Only of workers anticipated a good quality of life after SCI, versus of SCI patients who reported average or better quality of life.
2. Sanctity of Life Criterion: If this is the primary focus, even intolerable suffering would not justify ending treatment. Example: A -year-old woman resuscitated over times in a few days raises questions about whether this truly preserves the sanctity of life.
3. Excluding Patients: Some argue patients shouldn't be burdened with the choice, or that doctors should withhold CPR if there is no benefit. However, exclusion causes suffering for families who want everything tried.
4. "No Code" "No Care": Misinterpretation of DNR can lead to neglect. Example: Nurses failing to suction a patient with pulmonary secretions because of a DNR, leading to the patient "drowning" in secretions.
5. Documentation (JAHCO Standards): Verbal orders lead to confusion. DNR must be documented on the chart or specialized "Advanced Directives" forms. Informed consent must be obtained with a witness (nurse or family member).
Withholding vs. Withdrawing Treatment
Withholding Treatment: The act of not instituting measures that would prolong life or delay death.
Withdrawing Treatment: The removal or discontinuation of life-sustaining therapies considered medically futile for cure or symptom control.
Living Will: A legal document providing directions to providers regarding withholding or withdrawing support under certain conditions.
Common Justifications: Patient choice, burdens outweighing benefits, undesirable quality of life, or simply prolonging the dying process.
Clinical Pearl: Withdrawal or withholding is an action that allows a disease to follow its natural course; it is not an action intended to cause death.
Nutrition and Hydration at End of Life
Clinical Reality: Dying patients lose interest in food, become too weak to eat, or have difficulty swallowing.
Aggressive Nourishment Risks: Research indicates artificial hydration/nutrition does not benefit survival or comfort. It may increase peripheral edema, abdominal ascites, and respiratory secretions, leading to nausea, vomiting, and shortness of breath.
Natural Analgesia: Dehydration leads to ketosis, which increases endorphins, providing a natural analgesic effect and pain relief.
Xerostomia (Dry Mouth): Studies show dry mouth is not strictly linked to serum osmolality or dehydration. It is often relieved by sips of water and mouth care. It may also be caused by drugs (iatrogenic), mouth breathing, or candidiasis.
Pain Management and Nursing Ethics
Misconceptions vs. Reality: * Misconception: Narcotics make patients less responsive. Reality: Response is individual; drowsiness isn't guaranteed in severe pain. * Misconception: Patients will become addicted. Reality: This is proven false in end-of-life care. * Misconception: High doses lead to legal action. Reality: Prosecution for pain management is rare. * Misconception: Narcotics should only be given when asked. Reality: Pain is best controlled with early, consistent, and progressive narcotic levels.
The Doctrine of Double Effect: It is morally acceptable to relieve pain even if the result of the good act (pain relief) centers on a bad result (shortening the person's life).
Nursing Ethical Approaches: * Respect death as a normal human passage. * Advocate for patient preferences regarding technology. * Honesty about treatment options and effects. * Emphasize that discontinuing technology does not mean neglect; quality nursing care and symptom control continue. * Promote patient spirituality. * Recognize that well-cared-for patients promote the well-being of the family and friends.