End-of-life Issues

Overview

The primary purpose of any medical intervention is to prolong life or to improve quality Quality Activities and programs intended to assure or improve the quality of care in either a defined medical setting or a program. The concept includes the assessment or evaluation of the quality of care; identification of problems or shortcomings in the delivery of care; designing activities to overcome these deficiencies; and follow-up monitoring to ensure effectiveness of corrective steps. Quality Measurement and Improvement of life (QOL). At the end of life, preserving a patient’s QOL is more important than prolonging life.

Principles of medical ethics Ethics Medical ethics are a set of moral values that guide the decision-making of health care professionals in their daily practice. A sense of ethical responsibility has accompanied the profession of medicine since antiquity, and the Hippocratic oath was the 1st document to codify its core ethical principles. Medical Ethics: Basic Principles regarding end-of-life care

The key principles of medical ethics Ethics Medical ethics are a set of moral values that guide the decision-making of health care professionals in their daily practice. A sense of ethical responsibility has accompanied the profession of medicine since antiquity, and the Hippocratic oath was the 1st document to codify its core ethical principles. Medical Ethics: Basic Principles that apply to end-of-life issues include:

• Autonomy Autonomy Respect for the patient’s right to self-rule. Medical Ethics: Basic Principles:
  • Patients Patients Individuals participating in the health care system for the purpose of receiving therapeutic, diagnostic, or preventive procedures. Clinician–Patient Relationship have the right to self-determination, including the right to stop or withhold lifesaving care.
  • Patients Patients Individuals participating in the health care system for the purpose of receiving therapeutic, diagnostic, or preventive procedures. Clinician–Patient Relationship also have the right to a dignified death.
• Beneficence Beneficence The state or quality of being kind, charitable, or beneficial. The ethical principle of beneficence requires producing net benefit over harm. Medical Ethics: Basic Principles: a physician’s obligation to “do good” for the patient, including minimizing suffering
• Nonmaleficence Nonmaleficence Not acting with the intention to do harm. Medical Ethics: Basic Principles: 
  • A physician’s obligation to do no harm
  • This may come into conflict with the other principles ( autonomy Autonomy Respect for the patient’s right to self-rule. Medical Ethics: Basic Principles and beneficence Beneficence The state or quality of being kind, charitable, or beneficial. The ethical principle of beneficence requires producing net benefit over harm. Medical Ethics: Basic Principles) during end-of-life care, which generally take precedence over nonmaleficence Nonmaleficence Not acting with the intention to do harm. Medical Ethics: Basic Principles.
  • Many situations offer no truly “good” options.

Quality Quality Activities and programs intended to assure or improve the quality of care in either a defined medical setting or a program. The concept includes the assessment or evaluation of the quality of care; identification of problems or shortcomings in the delivery of care; designing activities to overcome these deficiencies; and follow-up monitoring to ensure effectiveness of corrective steps. Quality Measurement and Improvement of life

• Encapsulates well-being in the physical, emotional, spiritual, and societal aspects of a person’s life 
• According to the WHO, QOL is a “subjective evaluation of one’s perception Perception The process by which the nature and meaning of sensory stimuli are recognized and interpreted. Psychiatric Assessment of their reality, relative to their goals as observed through the lens Lens A transparent, biconvex structure of the eye, enclosed in a capsule and situated behind the iris and in front of the vitreous humor (vitreous body). It is slightly overlapped at its margin by the ciliary processes. Adaptation by the ciliary body is crucial for ocular accommodation. Eye: Anatomy of their culture and value system.”
• Preserving QOL ( beneficence Beneficence The state or quality of being kind, charitable, or beneficial. The ethical principle of beneficence requires producing net benefit over harm. Medical Ethics: Basic Principles) in terminally ill patients Patients Individuals participating in the health care system for the purpose of receiving therapeutic, diagnostic, or preventive procedures. Clinician–Patient Relationship is one of the most important guiding principles in end-of-life care. (“Living is not the good, but living well.”)

Initial approach

1. Adequate disclosure of information Disclosure of information Disclosure of information is the process through which physicians explain clinical information to their patient (or surrogate decision-maker) in a way that the patient or surrogate can understand. This process is crucial for patients to understand their clinical situation and make informed decisions about their care. Disclosure of Information/delivery of bad news Bad news Bad news is broadly defined as any information that may alter a patient’s view of their future. Bad news is typically life-changing information that should be communicated to the patient and family with empathy and honesty. Delivery of Bad News, including a definitive diagnosis, options, and expected outcomes:
   • Grounded and realistic information, without forming false expectations
   • Patient/family expectations should be reconciled with the current clinical situation.
2. Determination of capacity/surrogate decision-maker
3. Goals for end-of-life care should be determined according to the patient/family wishes, and advance directives Advance Directives The term advance directive (AD) refers to treatment preferences and/or the designation of a surrogate decision-maker in the event that a person becomes unable to make medical decisions on their own behalf. Advance directives represent the ethical principle of autonomy and may take the form of a living will, health care proxy, durable power of attorney for health care (DPAHC), and/or a physician’s order for life-sustaining treatment (POLST). Advance Directives should be established (if they don’t already exist).

Acknowledgment of cultural and religious traditions

• Religious adherence and customs must be acknowledged and respected.
• These customs must be reconciled early on with all aspects of end-of-life care (e.g., resuscitation Resuscitation The restoration to life or consciousness of one apparently dead. . Neonatal Respiratory Distress Syndrome, sedation, organ donation Organ Donation Brain Death) to ensure that the patient’s will is carried out.

Documentation Documentation Systematic organization, storage, retrieval, and dissemination of specialized information, especially of a scientific or technical nature. It often involves authenticating or validating information. Advance Directives

• All interactions with the patient/surrogate regarding end-of-life care must be documented in the medical record.
• Lack of adherence to a patient’s final wishes may result in legal liability.

Considerations during Palliative Care

Cardiopulmonary resuscitation Resuscitation The restoration to life or consciousness of one apparently dead. . Neonatal Respiratory Distress Syndrome ( CPR CPR The artificial substitution of heart and lung action as indicated for heart arrest resulting from electric shock, drowning, respiratory arrest, or other causes. The two major components of cardiopulmonary resuscitation are artificial ventilation and closed-chest cardiac massage. Cardiac Arrest)

• Desires regarding resuscitation Resuscitation The restoration to life or consciousness of one apparently dead. . Neonatal Respiratory Distress Syndrome should be determined right away and agreed upon with the patient/family members.
• These decisions may include:
  • Do not resuscitate Do Not Resuscitate Cardiopulmonary Resuscitation (CPR) ( DNR DNR Cardiopulmonary Resuscitation (CPR)) orders:
    • CPR CPR The artificial substitution of heart and lung action as indicated for heart arrest resulting from electric shock, drowning, respiratory arrest, or other causes. The two major components of cardiopulmonary resuscitation are artificial ventilation and closed-chest cardiac massage. Cardiac Arrest may be harmful for terminally ill patients Patients Individuals participating in the health care system for the purpose of receiving therapeutic, diagnostic, or preventive procedures. Clinician–Patient Relationship (complications of resuscitation Resuscitation The restoration to life or consciousness of one apparently dead. . Neonatal Respiratory Distress Syndrome).
    • All nursing and allied-health staff must be aware of the indication to “not resuscitate” (e.g., use a color-coding system).
  • Discontinuing/turning off implantable devices (e.g., pacemakers, defibrillators, cardioverters) in terminal phases of illness

Artificial nutrition and hydration

• Terminally ill patients Patients Individuals participating in the health care system for the purpose of receiving therapeutic, diagnostic, or preventive procedures. Clinician–Patient Relationship will physiologically reduce their caloric intake, and families must be adequately prepared.
• Nutritional support may be withdrawn completely at the dying phase according to patient wishes. 
• Inadequate hydration may quicken the patient’s death → should be tailored to the individual case

Palliative sedation

• Therapeutic goal: 
  • Resolving/alleviating refractory or intractable symptoms such as pain Pain An unpleasant sensation induced by noxious stimuli which are detected by nerve endings of nociceptive neurons. Pain: Types and Pathways, dyspnea Dyspnea Dyspnea is the subjective sensation of breathing discomfort. Dyspnea is a normal manifestation of heavy physical or psychological exertion, but also may be caused by underlying conditions (both pulmonary and extrapulmonary). Dyspnea, or delirium Delirium Delirium is a medical condition characterized by acute disturbances in attention and awareness. Symptoms may fluctuate during the course of a day and involve memory deficits and disorientation. Delirium in terminally ill patients Patients Individuals participating in the health care system for the purpose of receiving therapeutic, diagnostic, or preventive procedures. Clinician–Patient Relationship (as opposed to terminating their life)
  • Legal in all countries
• Indications:
  • Terminal illness with a discouraging prognosis Prognosis A prediction of the probable outcome of a disease based on a individual’s condition and the usual course of the disease as seen in similar situations. Non-Hodgkin Lymphomas and certainty of death 
  • Traditional or conventional therapies are incapable of providing relief despite maximal doses.
  • Traditional therapies cannot provide relief of symptoms in a timely manner.
  • Conventional therapies at high doses or with frequent administration will produce adverse outcomes.
• Timing: depends on a multiplicity of factors, including diagnosis, patient age, responsiveness to treatment, and the clinician Clinician A physician, nurse practitioner, physician assistant, or another health professional who is directly involved in patient care and has a professional relationship with patients. Clinician–Patient Relationship’s judgement
• Discussion with the patient and family:
  • Hinges on adequate disclosure of information Disclosure of information Disclosure of information is the process through which physicians explain clinical information to their patient (or surrogate decision-maker) in a way that the patient or surrogate can understand. This process is crucial for patients to understand their clinical situation and make informed decisions about their care. Disclosure of Information, aligning the patient’s/family’s desires, and proper determination of capacity of the patient or the surrogate
  • If a decision to start palliative sedation is reached, written informed consent Informed consent Informed consent is a medicolegal term describing the documented conversation between a patient and their physician wherein the physician discloses all relevant and necessary information to a patient who is competent to make an informed and voluntary decision regarding their care. Competency, disclosure, and voluntariness are the key elements upon which IC is based. Informed Consent should be obtained and documented in the record. 
• Pharmacologic agents used may include the following:
  • Benzodiazepines Benzodiazepines Benzodiazepines work on the gamma-aminobutyric acid type A (GABAA) receptor to produce inhibitory effects on the CNS. Benzodiazepines do not mimic GABA, the main inhibitory neurotransmitter in humans, but instead potentiate GABA activity. Benzodiazepines
  • Antipsychotics
  • Opioid Opioid Compounds with activity like opiate alkaloids, acting at opioid receptors. Properties include induction of analgesia or narcosis. Constipation analgesics
• Challenges:
  • Poor communication Communication The exchange or transmission of ideas, attitudes, or beliefs between individuals or groups. Decision-making Capacity and Legal Competence between clinicians and their patients Patients Individuals participating in the health care system for the purpose of receiving therapeutic, diagnostic, or preventive procedures. Clinician–Patient Relationship or surrogates
  • Lack of end-of-life care planning
  • Controversy regarding palliative sedation: mistakenly understood to be “slow euthanasia”

Preferred place of death

• Patients Patients Individuals participating in the health care system for the purpose of receiving therapeutic, diagnostic, or preventive procedures. Clinician–Patient Relationship may express their preference about the place where they wish to live their final moments (e.g., family home).
• The physician must be respectful of these wishes.
• Once needed hospital care has been completed, when possible, the attending physician should discharge terminally ill patients Patients Individuals participating in the health care system for the purpose of receiving therapeutic, diagnostic, or preventive procedures. Clinician–Patient Relationship according to their wishes to allow them to pass away at the place of their choosing.  
• Work with designated hospice coordinators to accommodate patients Patients Individuals participating in the health care system for the purpose of receiving therapeutic, diagnostic, or preventive procedures. Clinician–Patient Relationship’ wishes.
• For patients Patients Individuals participating in the health care system for the purpose of receiving therapeutic, diagnostic, or preventive procedures. Clinician–Patient Relationship under palliative care who remain in the hospital, avoid invasive and uncomfortable disruptions such as:
  • Phlebotomy Phlebotomy The techniques used to draw blood from a vein for diagnostic purposes or for treatment of certain blood disorders such as erythrocytosis, hemochromatosis, polycythemia vera, and porphyria cutanea tarda. Hereditary Hemochromatosis
  • Central/peripheral lines
  • Bedside alarms/monitors

Euthanasia and Physician-assisted Dying

Right to die

• All medical interventions, including artificial nutrition and hydration, may be terminated at the patient’s/surrogate’s request.
• Death with dignity: a death that is unavoidable, is free from suffering for patients Patients Individuals participating in the health care system for the purpose of receiving therapeutic, diagnostic, or preventive procedures. Clinician–Patient Relationship, families, and caregivers, and is in general accordance with the patients Patients Individuals participating in the health care system for the purpose of receiving therapeutic, diagnostic, or preventive procedures. Clinician–Patient Relationship’ and families’ desires
• Underlying principle: preservation of human dignity, especially for those that have run out of other, “good” options

Euthanasia

• “Eu + thanatos” = “good death”
• Broadly defined as the practice of actively and intentionally causing death to a patient in order to release them from incurable disease, intolerable suffering, or undignified death
• The actions are carried out by the physician.
• Underlying principle: A person terminates the life of another whose condition is in a state of such detriment that the former is compelled to end the latter’s suffering as a consequence of empathy Empathy An individual’s objective and insightful awareness of the feelings and behavior of another person. It should be distinguished from sympathy, which is usually nonobjective and noncritical. It includes caring, which is the demonstration of an awareness of and a concern for the good of others. Psychotherapy. 
• Almost all legal and medical associations around the world, including the American Medical Association, do not support euthanasia (it is legal only in the Netherlands and Belgium).

Physician-assisted dying (PAD)

• PAD occurs when a physician facilitates a patient’s death by providing the necessary means (e.g., lethal doses of prescription drugs) and/or information to enable the patient to perform a life-ending act. 
• The actions are carried out by the patient, not the physician.
• States with legal PAD as of 2021:
  • Oregon 
  • Washington State 
  • California 
  • Montana (ruled “not illegal”)
  • Colorado 
  • New Mexico
  • Maine
  • Vermont
  • New Jersey
  • Washington, DC
  • Hawaii
• These states have statutes that generally exempt physicians Physicians Individuals licensed to practice medicine. Clinician–Patient Relationship from civil or criminal liability when “in compliance Compliance Distensibility measure of a chamber such as the lungs (lung compliance) or bladder. Compliance is expressed as a change in volume per unit change in pressure. Veins: Histology with specific safeguards, they dispense or prescribe a lethal dose of drugs requested by a state resident with a terminal illness that, within reasonable medical judgement, will cause death within six months.”
• States with explicitly illegal PAD:
  • Alabama
  • Arkansas
  • Georgia
  • Idaho
  • Ohio
  • Rhode Island
• Characteristics of the ideal patient in which PAD could be considered (would sustain the argument of death as rationally good):
  • Terminally ill patient without a hope of cure
  • Situation of intolerable suffering
  • No further ways to alleviate symptoms or enhance QOL 
  • Their desire for death is not attributable to untreated pain Pain An unpleasant sensation induced by noxious stimuli which are detected by nerve endings of nociceptive neurons. Pain: Types and Pathways or depression.

Methods

• Withdrawal from life support
• Palliative or terminal sedation
• In places without PAD, some patients Patients Individuals participating in the health care system for the purpose of receiving therapeutic, diagnostic, or preventive procedures. Clinician–Patient Relationship will voluntarily stop eating and drinking (VSED) to hasten death; professional societies generally endorse VSED as ethical and legitimate.

Controversy

Despite being supported by the medical ethical principle of patient autonomy Autonomy Respect for the patient’s right to self-rule. Medical Ethics: Basic Principles, there is significant controversy surrounding PAD and euthanasia.

• Prohibition in the Hippocratic Oath: “I will not give a lethal drug to anyone even if I am asked, nor will I advise such a plan.”
• Many states and countries deem both practices illegal.
• Categorized in many jurisdictions as “mercy homicide”
• Questioning of doctors who “play god”
• Religious views that PAD is overriding value and sacredness of life
• Dogmatic belief of death as the ultimate evil

Organ Donation

Principles

Principles involved in organ donation Organ Donation Brain Death include:

• Utility: Donation provides a significant benefit to a critically ill group of patients Patients Individuals participating in the health care system for the purpose of receiving therapeutic, diagnostic, or preventive procedures. Clinician–Patient Relationship.
• Equity/ justice Justice An interactive process whereby members of a community are concerned for the equality and rights of all. Research Ethics/access: Distribution of benefits and burdens should be fair.
• Respect for persons
• Autonomy Autonomy Respect for the patient’s right to self-rule. Medical Ethics: Basic Principles (without coercion or interference)

Donors

• A patient may express in life their desire to donate their organs, or their families/surrogates can approve donation (voluntarism). 
• Different jurisdictions and countries have different definitions of who can be considered an organ donor. 
• Physicians Physicians Individuals licensed to practice medicine. Clinician–Patient Relationship and all medical personnel need to be familiar with legislation Legislation Works consisting of the text of proposed or enacted legislation that may be in the form of bills, laws, statutes, ordinances, or government regulations. Patient-Doctor Confidentiality regarding organ donation Organ Donation Brain Death in their practice location. 

Types of deceased organ donors

Generally, there are 2 types of organ donation Organ Donation Brain Death:

• Donation after neurologic determination of death (DNDD):
  • Also referred to as “ brain Brain The part of central nervous system that is contained within the skull (cranium). Arising from the neural tube, the embryonic brain is comprised of three major parts including prosencephalon (the forebrain); mesencephalon (the midbrain); and rhombencephalon (the hindbrain). The developed brain consists of cerebrum; cerebellum; and other structures in the brain stem. Nervous System: Anatomy, Structure, and Classification death”
  • The majority of donors
• Donation after circulatory determination of death (DCDD)

The circumstance of organ retrieval for DCDD are described according to the Maastricht classification:

• Uncontrolled DCDD: organ retrieval after unexpected cardiac arrest Cardiac arrest Cardiac arrest is the sudden, complete cessation of cardiac output with hemodynamic collapse. Patients present as pulseless, unresponsive, and apneic. Rhythms associated with cardiac arrest are ventricular fibrillation/tachycardia, asystole, or pulseless electrical activity. Cardiac Arrest, without resuscitation Resuscitation The restoration to life or consciousness of one apparently dead. . Neonatal Respiratory Distress Syndrome
• Controlled DCDD: organ retrieval after withdrawal of life-sustaining measures in a terminally ill patient. 
• In the United States, category III is the most common; category II is also used in Europe.