Chapter 11: End of Life Considerations

End-of-Life Issues

These include how death is defined, when treatment becomes futile, and how patients’ wishes are honored through advance directives, surrogates, and informed consent. End-of-life care emphasizes communication, symptom control, and respect for patient values.

Attitudes toward death and dying vary widely based on culture, religion, age, personal experience, and social context. Understanding these perspectives helps providers support patients and families more effectively.

Common Attitudes Toward Death

• Fear of pain or suffering
• Concern about being a burden to others
• Desire for control and dignity at the end of life
• Acceptance and meaning-making

Cultural Perspectives

Beliefs and rituals around death vary; providers should be culturally sensitive and avoid assumptions.

Attitudes in Healthcare Settings

• Clinicians may struggle with balancing life-prolonging treatments and quality of life.
• Communication about prognosis and goals of care is essential.

Factors Affecting Attitudes

• Age, personal beliefs, family expectations, prior experiences with death, and access to palliative care.

Determination of Death

Determination of death can be based on either irreversible cessation of circulatory and respiratory functions or irreversible cessation of all functions of the entire brain, including the brain stem.

Legal Definitions (U.S.)

The Uniform Determination of Death Act (UDDA) provides a legal framework: death is determined by acceptable medical standards and may be declared under circulatory-respiratory or neurological criteria.

Types of Death

• Clinical death: cessation of heartbeat and breathing.
• Brain death: irreversible loss of all brain function, including brain stem.
• Cardiopulmonary death: permanent cessation of circulatory and respiratory function.

Criteria for Brain Death

• Unresponsive coma with known cause
• Absence of brainstem reflexes (pupillary, corneal, oculocephalic/oculovestibular, gag, cough)
• Apnea test confirms lack of respiratory drive at elevated CO₂
• Exclude confounders (hypothermia, drug intoxication, metabolic/electrolyte derangements)
• Cause must be known and irreversible
• Performed and confirmed by trained physicians; may include EEG or imaging

Importance in Healthcare

• Guides end-of-life care decisions
• Enables organ donation if death is declared under brain death criteria
• Prevents futile medical interventions
• Provides legal clarity for death certification and estate matters

A Persistent Vegetative State (PVS) is a medical condition in which a person loses cognitive neurological function and awareness of the environment but retains non-cognitive function and a preserved sleep-wake cycle.

Definition and Key Features

• Wakefulness without awareness
• No purposeful responses; may have reflexive movements
• Eyes may open; basic brainstem functions intact

Causes

• Traumatic brain injury (TBI)
• Anoxia/hypoxia
• Stroke or severe infection
• Degenerative diseases

Diagnosis

• Clinical assessments over time
• Imaging (CT/MRI), EEG
• Exclusion of minimally conscious state or locked-in syndrome

Prognosis

• Depends on cause and duration; recovery less likely over time

Legal and Ethical Considerations

• Advance directives and surrogate decision making are critical; landmark cases highlight complex decisions.

Definition and Key Features of Coma

• State of deep unconsciousness with eyes closed and no wake-sleep cycles

Causes of Coma

• TBI, stroke, hypoxia, intoxication, metabolic disorders

Diagnosis

• Glasgow Coma Scale
• Neuroimaging
• EEG

Stages and Outcomes

• Recovery, PVS, minimally conscious state, or death

Prognosis Factors

• Age, cause, duration, neurologic findings

Ethical and Legal Aspects

• Decision-making capacity absent; reliance on surrogates and prior directives

Autopsies

Autopsies may be clinical (hospital-based for diagnostic/quality review) or forensic (medicolegal for unexplained or suspicious deaths). Benefits include clarifying cause of death, quality improvement, education, and family counseling. Consent rules vary; certain deaths require reporting to medical examiner or coroner.

Documents for Those Living with Terminal Illness

Patients may prepare documents to guide future care: living wills, durable power of attorney for healthcare (healthcare proxy), POLST/MOLST forms, DNR/DNI orders, and do-not-hospitalize preferences.

Advance Directives

Advance directives are written instructions regarding healthcare preferences if a person loses decision-making capacity. They typically include a living will (treatments desired or refused) and designation of a healthcare agent (durable power of attorney for healthcare). Requirements vary by state; generally require adult status, capacity, and witnesses/notary. Providers should document and honor directives consistent with applicable law and hospital policy. Limitations include vague language, outdated documents, or unavailability at the point of care; ongoing goals-of-care discussions are essential.

Health Care Services for Terminally Ill Patients

Palliative care: interdisciplinary care focused on symptom relief and quality of life at any stage of serious illness, concurrent with curative treatment.

Hospice: specialized, comfort-focused care typically in the last 6 months of life, when curative therapy is no longer pursued.

Hospice Care

Hospice teams include physicians, nurses, social workers, chaplains, aides, and volunteers. Settings include home, inpatient units, nursing homes, and assisted living. Medicare Hospice Benefit outlines coverage, elections, and recertification.

End of Life Discussions

Goals-of-care conversations should be early and iterative. Use frameworks like SPIKES (Setting, Perception, Invitation, Knowledge, Emotions, Strategy/Summary) or REMAP (Reframe, Expect emotion, Map values, Align, Propose).

The Right to Die Movement

The right-to-die movement advocates for patient autonomy in refusing or discontinuing treatment and, in some jurisdictions, for medical aid in dying (MAID). Distinguish between withholding/withdrawing treatment (legally accepted), palliative sedation, physician-assisted suicide (legal in select U.S. states under strict criteria), and euthanasia (illegal in the U.S.).

Euthanasia and Physician-Assisted Suicide

Euthanasia involves a clinician directly administering life-ending measures; physician-assisted suicide (PAS) involves prescribing a lethal medication that a capable patient self-administers. Where PAS/MAID is legal, strict eligibility, capacity assessments, waiting periods, and documentation are required.

The National Organ Donation Act

Prohibits the sale of human organs, establishes the Organ Procurement and Transplantation Network (OPTN), and sets allocation principles. Encourages voluntary donation and standardized practices.

Organ Donor Directives

Individuals can document donation preferences via driver’s license registry, state registries, or advance directives. Hospitals must identify potential donors and notify OPOs per federal regulations.

The Uniform Anatomical Gift Act

Provides a legal framework for making anatomical gifts before death; clarifies who may authorize donation if wishes are unknown; prioritizes documented donor intent.

The Process of Grieving

Grief responses are individual and non-linear. Models (e.g., Kübler-Ross) describe common experiences (denial, anger, bargaining, depression, acceptance) but are not prescriptive stages.