Ethical and Legal Issues related to End of Life Care

Death: an eventDying: a

processUniqueIndividual

Changes in Death and Dying

Late 1800’sEarly to mid 1900’sIn AmericaCausesDemographic/social trendsLocation

Death and Dying in America

Disparity between the way people die/ the way they want to die

“live until you die” (philosophy of Hospice)

Patient/family perspective

Factors Influencing End of Life Care

Factor: Advances in Techonology

Can be victims of technology

Dying can be extended beyond what is reasonable

Factor: Aging Population

Possibility of physical decline

Possibility of mental decline

Fear of nursing home placement

Factor: Medical Futility

Fear of what medicine can’t cure

Mental deterioration

Wasting away of body

Disfigurement Loss of energy Loss of control Pain Psychological

anguish

Factor: Social/ Family systems

Fear of not being taken seriously as persons

Fear our rights will be slighted

Violation of our meaning of life

Fear someone else will control us

Factors: Health Care

Lack of professional knowledge

Fear of litigation Access to hospice Legal/

bureaucratic obstacles

Reimbursement

Factor: Search for Life’s Meaning

What does Life Mean for a human being?

Can human life be equated with mere biological functioning?

Can one cease being a person while still in some sense be alive?

Factor: Search for Life’s Meaning

What meaning do we give to

dependency on others

decline and aging Pain and suffering Illness and death

Issues Related to End of Life

Communication and Decision-makingProlongation of live vs quality of lifeWithholding or withdrawing treatmentCaring and ComfortMedical FutilityAssisted SuicideResearch

Issues of Decision Making and Communication

ConsentConfidentialityDisclosureAdvanced Care

planningPatient Self-

DeterminationAdvanced

directives

Difficulties with Communication

Difficulties come when families:Do not want to address issue of deathWant to protect loved ones through

silenceAre faced with death “out of

sequence”

Issue: Prolongation of Life and Quality of Life

Acute Therapeutic care

Palliative treatment

Artificial life support

Resuscitation

Issues of Withholding/ Withdrawing Treatment

Based on right to self determination

Balance of benefit vs. burden

Examples: Artificial feeding Hydration Ventilation dialysis

Do Not Attempt Resuscitation/ no Code

Confirms that no measure to prolong life be carried out

Written MD order required

Often required by emergency response systems

Issues of Care and Comfort

Professional-patient relationshipProvision of palliative careControl of symptomsPrinciple of Double Effect

Assisted suicide/EuthanasiaAssisted Suicide

The ultimate choiceFear loss of control

Does autonomy extend to actively ending our lives

Oregon Law19941997 Supreme Court upholds law

Request often signify crisis, unrelieved suffering, plea for help

Medical Futility

Conflicts over benefits of treatmentOften involve communication

failuresCare should be guided by values

and goals

Issue of cost of end of life care

Futile care is costly Current system

creates severe family burden

Limits to medical interventions

Hospice care as a cost effective option

Research at the End of Life

Need for appropriate research

Sense of obligation may exist

Issues of non-malfeasance, autonomy

Health Care professional role

How do we address the ethical issuesValues clarification

Support for the professionalAdvocacyMember of interdisciplinary teamUse of ethics resources

Facilitating Ethical and legal practice

As professionals in health care Practice within

the standards of care

Communicate wishes of patient in collaboration with interdisciplinary team

Facilitating Ethical and legal practice

If patient or family are unsure of options Communications among

family members With clergy or spiritual

guide Physicians and other

healthcare professionals

Conclusion

Victor Frankl (1959) “ We must never forget that we may also find meaning in life even when confronted with a hopeless situation when facing a fate that cannot be changed. . . When we are no longer able to change a situation. . . We are challenged to change ourselves (Frankle, 1984, p. 135)