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.
Last updated: November 17, 2023
CONTENTS
Overview
Considerations during Palliative Care
Euthanasia and Physician-assisted Dying
Organ Donation
References
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 regarding end-of-life care
The key principles 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/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 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
Technique of providing CPR
Image: “Chest-compression-hand-placement” by Another-anon-artist-234. License: CC0 1.0
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, dyspnea,
or 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, 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
Antipsychotics
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 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 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”
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, 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 ICU
withdrawal of life-sustaining
treatments
IV Either Cardiac arrest in a patient who is ICU
brain-dead
References
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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/
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