End-of-life Issues

The end of a patient’s life has been a difficult, complex, and often controversial aspect of medicine, because, historically, death has been conceptualized as a “failure” on the physician’s part. As our understanding of death has evolved, so has the physician’s relationship to it, becoming a companion to the patient in their final moments. Moreover, experienced doctors understand that during the last days of a person’s life, the focus must be on maximizing quality of life rather than on prolonging it.

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Editorial responsibility: Stanley Oiseth, Lindsay Jones, Evelin Maza

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Overview

The primary purpose of any medical intervention is to prolong life or to improve quality of life (QOL). At the end of life, preserving a patient’s QOL is more important than prolonging life.

Principles of medical ethics Medical 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. Basics of Medical Ethics regarding end-of-life care

The key principles of medical ethics Medical 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. Basics of Medical Ethics that apply to end-of-life issues include:

  • Autonomy: 
    • Patients have the right to self-determination, including the right to stop or withhold lifesaving care.
    • Patients also have the right to a dignified death.
  • Beneficence: a physician’s obligation to “do good” for the patient, including minimizing suffering
  • Nonmaleficence: 
    • A physician’s obligation to do no harm
    • This may come into conflict with the other principles (autonomy and beneficence) during end-of-life care, which generally take precedence over nonmaleficence.
    • Many situations offer no truly “good” options.

Quality 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 of their reality, relative to their goals as observed through the lens of their culture and value system.”
  • Preserving QOL (beneficence) in terminally ill patients 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 Delivery of bad news At some point in their careers, all physicians will have to deliver bad news to patients and/or their families. While this is a difficult and sensitive subject, there are communication techniques and protocols that can assist physicians in delivering bad news in a way that maintains and even strengthens the physician-patient relationship. 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, sedation, organ donation) to ensure that the patient’s will is carried out.

Documentation

  • 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 (CPR)

  • Desires regarding resuscitation should be determined right away and agreed upon with the patient/family members.
  • These decisions may include:
    • Do not resuscitate (DNR) orders:
      • CPR may be harmful for terminally ill patients (complications of resuscitation).
      • 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 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 Pain has accompanied humans since they first existed, first lamented as the curse of existence and later understood as an adaptive mechanism that ensures survival. Pain is the most common symptomatic complaint and the main reason why people seek medical care. Physiology of Pain, 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 (as opposed to terminating their life)
    • Legal in all countries
  • Indications:
    • Terminal illness with a discouraging prognosis 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’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 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 analgesics Opioid analgesics Opiates are drugs that are derived from the sap of the opium poppy. Opiates have been used since antiquity for the relief of acute severe pain. Opioids are synthetic opiates with properties that are substantially similar to those of opiates. Opioid Analgesics
  • Challenges:
    • Poor communication between clinicians and their patients or surrogates
    • Lack of end-of-life care planning
    • Controversy regarding palliative sedation: mistakenly understood to be “slow euthanasia”

Preferred place of death

  • Patients 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 according to their wishes to allow them to pass away at the place of their choosing.  
  • Work with designated hospice coordinators to accommodate patients’ wishes.
  • For patients under palliative care who remain in the hospital, avoid invasive and uncomfortable disruptions such as:
    • Phlebotomy
    • 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 not unavoidable, is free from suffering for patients, families, and caregivers, and is in general accordance with the patients’ 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. 
  • 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 from civil or criminal liability when “in compliance 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 Pain has accompanied humans since they first existed, first lamented as the curse of existence and later understood as an adaptive mechanism that ensures survival. Pain is the most common symptomatic complaint and the main reason why people seek medical care. Physiology of Pain or depression.

Methods

  • Withdrawal from life support
  • Palliative or terminal sedation
  • In places without PAD, some patients 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, 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 include:

  • Utility: Donation provides a significant benefit to a critically ill group of patients.
  • Equity/justice/access: Distribution of benefits and burdens should be fair.
  • Respect for persons
  • Autonomy (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 and all medical personnel need to be familiar with legislation regarding organ donation in their practice location. 

Types of deceased organ donors

Generally, there are 2 types of organ donation:

  • Donation after neurologic determination of death (DNDD):
    • Also referred to as “ brain death Brain death Brain death is a legal and clinical term describing the irreversible cessation of all cerebral and brainstem functions, including the ability of the brain stem to regulate vegetative and respiratory activities. Brain 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
  • 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.
Table: Maastricht classification
Category Type Circumstances Typical location
I Uncontrolled Dead on arrival ED
II Uncontrolled Unsuccessful resuscitation ED
III Controlled Cardiac arrest follows planned withdrawal of life-sustaining treatments ICU
IV Either Cardiac arrest in a patient who is brain-dead ICU

References

  1. Pope, T.M. (2021). Legal aspects in palliative and end-of-life care in the United States. In Givens, J. (Ed.), UpToDate. Retrieved June 9, 2021, from https://www.uptodate.com/contents/legal-aspects-in-palliative-and-end-of-life-care-in-the-united-states 
  2. Organ Procurement and Transplantation Network. (2015). Ethical principles in the allocation of human organs. US Department of Health and Human Services. Retrieved June 9, 2021, from https://optn.transplant.hrsa.gov/resources/ethics/ethical-principles-in-the-allocation-of-human-organs/ 
  3. Bhyan, P., Pesce, M. B., Shrestha, U., & Goyal, A. (2021). Palliative sedation. StatPearls. Treasure Island (FL): StatPearls Publishing. http://www.ncbi.nlm.nih.gov/books/NBK470545 
  4. Crone, C. C., Marcangelo, M. J., Shuster, J. L., Jr (2010). An approach to the patient with organ failure: transplantation and end-of-life treatment decisions. Medical Clinics of North America 94:1241–1254. https://doi.org/10.1016/j.mcna.2010.08.005
  5. Kilbourn, K., Madore, S. (2020). Euthanasia. Encyclopedia of Behavioral Medicine, pp. 796–797. doi:10.1007/978-3-030-39903-0_1399 
  6. Oates, J. R., Maani, C. V. (2021). Death and dying. StatPearls. http://www.ncbi.nlm.nih.gov/books/NBK536978/
  7. El-Bizri N. (2019) Death. In: Paul H. (Ed.) Critical Terms in Futures Studies. Palgrave Macmillan, Cham
  8. Ramsey C. (2016). The right to die: beyond academia. Monash Bioethics Review 34:70–87. https://doi.org/10.1007/s40592-016-0056-0
  9. Banović, B., Turanjanin, V. (2014). Euthanasia: murder or not: a comparative approach. Iranian Journal of Public Health 43:1316–1323.
  10. Stephanie M Harman, MD, F Amos Bailey, MD, Anne M Walling, MD, PhD (2020) Palliative care: The last hours and days of life. In: UpToDate, Post, Jane Givens, MD (Ed), UpToDate, Waltham, MA.
  11. Caplan A. (2014). Bioethics of organ transplantation. Cold Spring Harbor Perspectives in Medicine 4(3):a015685. https://doi.org/10.1101/cshperspect.a015685
  12. Teoli, D., Bhardwaj, A. (2021). Quality of life. StatPearls. http://www.ncbi.nlm.nih.gov/books/NBK536962/ 
  13. Sadock, B. J., Sadock, V. A., Ruiz, P. (2014). End-of-life issues. Chapter 34 of Kaplan and Sadock’s Synopsis of Psychiatry: Behavioral Sciences/Clinical Psychiatry, 11th ed. Philadelphia: Lippincott Williams and Wilkins, pp. 1352–1373.

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