ETHICAL ISSUES IN PALLIATIVE CARE

MARGARET FITCH

TORONTO CANADA

MARCH 2018

PLAN FOR SESSION

• REVIEW THE NATURE OF ETHICAL DILEMMAS

• HIGHLIGHT THE COMMON ETHICAL DILEMMAS IN

PALLIATIVE CARE

• DISCUSS CASE STUDIES

ETHICS

• SYSTEMATICALLY EVALUATING VARYING VIEWPOINTS AS IT RELATES TO WHAT IS USUALLY

“RIGHT OR WRONG” OR “GOOD OR BAD” IN THE CONTEXT OF FAIRNESS, RIGHTS,

OBLIGATIONS, BENEFITS TO SOCIETY, OR SPECIFIC VIRTUES THAT ENJOIN HONESTY,

COMPASSION AND LOYALTY.

• THE STUDY OF ETHICS AS IT INTERSECTS WITH HEALTH CARE IS TERMED BIOETHICS.

COMMENTS ABOUT ETHICS

• ETHICS DEALS WITH QUESTIONS OF HUMAN CONDUCT AND THE CONCEPT OF MORALITY –

MORAL PROBLEMS AND JUDGEMENTS

• MORALS/ETHICS CONCERN CONDUCT, CHARACTER, MOTIVES INVOLVED IN MORAL ACTS

• MORALS/ETHICS INCLUDES THE NOTION OF APPROVAL OR DISAPPROVAL OF A GIVEN

CONDUCT, CHARACTER OR MOTIVE (GOOD, DESIRABLE, RIGHT, WORTHY)

• MORALS/ETHICS CONCERN A SET OF RULES/BODY OF PRINCIPLES REGARDING A STANDARD

OF CONDUCT

ETHICS AND LAW

• ETHICS AND LAWS IN A GIVEN SOCIETY WAS SIMILAR IN THAT THEY HAVE DEVELOPED IN THE

HISTORICAL, SOCIAL, CULTURAL, PHILOSOPHIC SOIL.

• BUT THEY ALSO DIFFER…

• THEREFORE, ACTIONS CAN BE

• ETHICAL AND LEGAL

• UNETHICAL AND ILLEGAL

• ETHICAL AND ILLEGAL

• UNETHICAL AND LEGAL

• AN INDIVIDUAL IS ENTITLED TO CERTAIN RIGHTS AT LAW AND WILL BE PROTECTED BY THE COURTS.

HOWEVER, THE INDIVIDUAL CANNOT ASK THE COURTS TO ENFORCE ANY HIGHER DUTY OF ETHICS

OR MORALITY.

ETHICAL DILEMMA

• TWO OR MORE MORAL RULES APPLY TO THE SAME SITUATION BUT DO NOT LEAD TO THE

SAME CONCLUSION (CONFLICTING MORAL CLAIMS)

• MUST DETERMINE WHICH RULES TAKE PRECEDENCE OVER THE OTHERS

• QUESTIONS THAT ARISE:

• WHAT OUGHT I TO DO?

• WHAT IS THE RIGHT THING TO DO?

• WHAT HARM AND BENEFIT RESULTS FROM THIS ACTION OR DECISION?

ETHICAL REASONING

• DEONTOLOGIC

• PROCEEDS FROM RULES

• APPLIES GENERAL RULE DEDUCTIVELY TO SPECIFIC CASES

• WANTS TO APPLY RULES PROPERLY AND HENCE ACT RIGHTLY AND NOT WRONGLY

• UTILITARIAN

• BALANCE COSTS WITH BENEFITS OF A LIKELY ACTION

• WANTS TO ASSESS THE OUTCOME TO MAXIMIZE GOOD AND MINIMIZE BAD

Principle Definition

Autonomy The right to personal liberty or freedom of choice and of will

afforded to persons capable of deliberation

A principle which governs the rule informed consent and consumer

rights

Also refers to respect for others and safety of life

Beneficence A duty (meaning required, not simply justified) to help others

further their important legitimate interests when we can do so with

minimal risk to ourselves

Non-maleficence A duty not only distinct from the obligation to ‘do good’ but is also

more stringent and supreme a principle according to utilitarianism

but not according to deontology

Includes harms caused by intending permitting imposing on

another’s’ reputation property liberty relationships privacy.

Principle Definition

Paternalism

(a type of beneficence)

The duty to restrict the liberty, autonomy or choice of the individual

in order to prevent harm when the harm from one’s choices in

greater than the harm of restricting freedom.

Justice The duty to give to another what s/he deserves or can legitimately

claim based on morally relevant principles of being productive or

being in need.

Involves the distribution of harms and good under conditions of

scarcity.

Truth-telling The duty or veracity to tell the truth and not deceive.

Actions Defined/examples

Obligatory Duties

Care for patient in an emergency

Permissible May perform/no duty to do so

Discontinue life support – vegetative state

Impermissible Forbidden

Not assist in suicide

Desirable Good to do/no duty to do so

Spend time with family member of hospitalized patient

FUNDAMENTAL QUESTIONS

• QUESTION OF PRINCIPLES

• WHAT OUGHT ONE TO DO IN THIS CASE?

• QUESTION OF VALUES

• WHAT GOALS ARE WORTH PURSUING?

• QUESTION OF VIRTUES

• WHAT GOES IT MEAN TO BE A GOOD -------?

Primary underlying principles

of bioethics

Description

Beneficence Act in the best interests of patients (even at some

inconvenience and sacrifice to oneself

Nonmaleficence Avoid actions that would be harmful to patients

Autonomy Patient are independent actors whose freedom to

control their persons is to be respected

Justice Ensure that fairness and equity are maintained among

individuals

ETHICAL DECISION-MAKING

• STEP 1

• WHAT ARE THE MEDICAL FACTS?

• PATIENT CONDITION

• DIAGNOSIS

• PROGNOSIS

• IMPACT OF VARIOUS TREATMENTS

ETHICAL DECISION-MAKING

• STEP 2

• WHAT ARE THE PATIENT’S PREFERENCES?

• WHAT ARE THE PATIENT’S VALUES?

• WHAT ADVANCED DIRECTIVES HAVE BEEN MADE?

ETHICAL DECISION-MAKING

• STEP 3

• WHAT WILL BE THE QUALITY OF LIFE?

• (PATIENT’S PREFERENCES AND VALUES APPLIED TO LIKELY OUTCOMES OF

VARIOUS TREATMENTS OR LACK OF TREATMENTS)

• (THE VALUE THE PATIENT WOULD ASSIGN TO THE VARIOUS POSSIBILITIES

SHOULD BE CONSIDERED)

ETHICAL DECISION-MAKING

• STEP 4

• WHAT SOCIO-ECONOMIC FACTORS SHOULD BE TAKEN INTO ACCOUNT?

• E.G., COST, RESOURCE SCARCITY, IMPACT OF THE DECISION ON FAMILY AND ON

CARE GIVERS, LEGAL IMPLICATIONS OF WHATEVER DECISION IS MADE

ETHICAL PRACTICE: NURSES

• EXAMINE PERSONAL BELIEFS, VALUES, PHILOSOPHIES

• DISCUSS ETHICAL ISSUES WITH COLLEAGUES

• ADDRESS ADVANCED DIRECTIVES WITH PATIENTS/FAMILIES

• SERVE AS A PATIENT ADVOCATE

• MAINTAIN SENSITIVITY TO PATIENTS’ CULTURAL DIFFERENCES

• PRESERVE PATIENT AUTONOMY, DIGNITY, AND RIGHTS

• FIND RESOURCES TO EXAMINE ISSUES

• ENGAGE IN ETHICAL DECISION-MAKING

NURSING VALUES AND ETHICAL RESPONSIBILITIES

A. PROVIDING SAFE, COMPASSIONATE, COMPETENT AND ETHICAL CARE

B. PROMOTING HEALTH AND WELL-BEING

C. PROMOTING AND RESPECTING INFORMED DECISION-MAKING

D. HONOURING DIGNITY

E. MAINTAINING PRIVACY AND CONFIDENTIALITY

F. PROMOTING JUSTICE

G. BEING ACCOUNTABLE

CNA, 2017

AUTONOMY

• RIGHT TO MAKE DECISIONS ABOUT ONESELF

• INFORMED CONSENT

• TRUTH-TELLING

• ADVANCED DIRECTIVES

• SHARED DECISION-MAKING

FUTILITY

• MEDICALLY INAPPROPRIATE TREATMENT

• FUTILE: THERAPIES THAT PROLONG LIFE SIMPLY FOR THE PURPOSE OF PROLONGATION IN

WHICH THE PATIENT DOES NOT HAVE THE CAPACITY TO APPRECIATE LIFE LEADING TO

OUTCOMES THAT ARE ETHICALLY AND MEDICALLY UNACCEPTABLE AND INAPPROPRIATE

• WHAT LIKELIHOOD OF ACHIEVING THE PATIENT GOALS?

• WITHOLDING/WITHDRAWING TREATMENTS: RESUSCITATION, VENTILATION, NUTRITION AND

HYDRATION, KIDNEY DIALYSIS, ANTIBIOTICS

ETHICAL DILEMMAS

• ASSISTED SUICIDE

• SUICIDE

• EUTHANASIA

• INVOLUNTARY EUTHANASIA

• VOLUNTARY EUTHANASIA

• PRINCIPLE OF DOUBLE EFFECT

• MEDICALLY HASTENED DEATH

• PALLIATIVE SEDATION (TERMINAL SEDATION)

MORAL DISTRESS

• ONE UNDERSTANDS THE RIGHT THING OR COURSE OF ACTION BUT IS UNABLE TO ACT IN

ACCORDANCE WITH CORE VALUES AND OBLIGATIONS BECAUSE OF INSTITUTIONAL CONSTRAINTS.

• FREQUENT RECURRENCES MAY THREATEN SELF-WORTH

• CONSCIENTIOUS OBJECTION: REJECTION OF AN ACTION BECAUSE THE ACTION WOULD VIOLATE A

DEEPLY HELD MORAL, RELIGIOUS OR ETHICAL VALUE ABOUT WHAT IS RIGHT OR WRONG (I.E., THE

REFUSAL TO PERFORM ABORTIONS BASED ON THE BELIEF THAT LIFE BEGINS AT CONCEPTION)

JUSTICE AND ALLOCATION OF RESOURCES

• HEALTH CARE COSTS OF THE 21ST CENTURY HAVE ESCALATED

• MANY FACTORS:

• EXPENSIVE STATE OF THE ART MEDICAL FACILITIES

• COSTS OF MEDICAL/HEALTH EDUCATION

• ADVANCEMENT OF NOVEL TECHNOLOGIES

• NEW AND EXPENSIVE MEDICATIONS

• INCREASING MORBIDITY AMONG THE AGING POPULATION

• NOTE: FEE FOR SERVICE SYSTEM OFFERS NO INCENTIVE FOR REDUCING COSTS

TODAY’S ETHICAL DILEMMAS

• PATERNALISM VERSUS SELF-DETERMINATION

• ORDINARY VERSUS EXTRAORDINARY MEANS OF PRESERVING LIFE

• DELAYING OR HASTENING DEATH

• RATIONING VERSUS GOOD STEWARDSHIP

SCENARIO 1

• AMALIA WAS A 95-YEAR-OLD WOMAN WHO SPOKE ABOUT WANTING GOD

TO TAKE HER HOME. SHE WAS NOT AFRAID OF DEATH AND WAS READY TO

“LET NATURE TAKE ITS COURSE.” NURSES LISTENED TO HER WISHES AND

ATTENDED TO HER NEEDS BY PROVIDING CARE TO SUPPORT HER DYING. SHE

DIED A NATURAL DEATH.

SCENARIO 2

• ABDUL WAS A MAN IN HIS LATE 50S WHO UNEXPECTEDLY BECAME COMATOSE FOLLOWING

BRAIN SURGERY AND WAS SUSTAINED ON LIFE SUPPORT. HIS DOCTORS WISHED TO REMOVE

LIFE SUPPORTS, AS THEY COULD SEE NO POSSIBILITY THAT HE WOULD RECOVER. THE FAMILY

DEMANDED THAT ALL LIFE SUPPORTS BE CONTINUED. THE NURSES CARING FOR ABDUL

EXPERIENCED MORAL DISTRESS AND A CONFLICT OF CONSCIENCE KNOWING CONTINUED

MEDICAL CARE WAS CONSIDERED INAPPROPRIATE (OR FUTILE) AND THE CAUSE OF INCREASED

SUFFERING.

SCENARIO 3

• MONIKA HAD WORKED AS A NURSE FOR MANY YEARS, CARING FOR PEOPLE WITH

ADVANCED DEMENTIA. PRIOR TO BEING DIAGNOSED WITH ALZHEIMER’S DISEASE HERSELF SHE

HAD STATED IN A WRITTEN ADVANCE DIRECTIVE THAT SHE BE ALLOWED TO DIE IF SHE WAS

EVER IN A STATE OF ADVANCED DEMENTIA. IN SPITE OF THIS, NURSES AND CARE AIDES WERE

INSTRUCTED TO CONTINUE TO GIVE HER FOOD AND FLUIDS.

SCENARIO 4

• MAURICE WAS A PHYSICIAN DIAGNOSED WITH TERMINAL BRAIN CANCER WHO, IN HIS FINAL

DAYS, MADE AN IMPASSIONED PLEA THAT HE RECEIVE HELP TO DIE BECAUSE HIS SUFFERING

WAS SO GREAT. NURSES ON THE PALLIATIVE CARE TEAM FELT IN CONFLICT WITH THEIR

PROFESSIONAL ETHICS (CANADIAN NURSES ASSOCIATION [CNA], 2008), THAT REQUIRED

THEM TO PROMOTE HEALTH AND WELL-BEING, FOSTER COMFORT AND “WORK TO RELIEVE

PAIN AND SUFFERING, INCLUDING APPROPRIATE AND EFFECTIVE SYMPTOM AND PAIN

MANAGEMENT, TO ALLOW PERSONS TO LIVE WITH DIGNITY” (P. 14), AND MAURICE’S WISHES,

PARTICULARLY BECAUSE THE TEAM WAS UNABLE TO RELIEVE HIS SUFFERING.

SCENARIO 5

• RASHIDA WISHES TO BE ABLE TO MAKE A CHOICE TO DIE WHEN HER AMYOTROPHIC LATERAL

SCLEROSIS (ALS) PREVENTS HER FROM TAKING HER OWN LIFE THROUGH MEDICALLY ASSISTED

MEANS. ROLF, HER HOME CARE NURSE, FEELS UNCERTAIN ABOUT WHAT HE CAN SAY TO

RASHIDA AND HOW TO SUPPORT HER BUT KNOWS HE MUST TAKE CARE TO KEEP

COMMUNICATION LINES OPEN.

SCENARIO 6

• AMALIA WAS AN ELDERLY PERSON READY TO LET NATURE TAKE ITS COURSE. SHE WAS NOT AFRAID

OF DEATH AND SHE WAS NOT ASKING THAT DEATH BE HASTENED BY MEDICAL INTERVENTION. SHE

WAS PROVIDED WITH PALLIATIVE CARE IN THE NURSING HOME WHERE SHE HAD LIVED FOR

SEVERAL DECADES. DURING HER FINAL THREE WEEKS, SHE REQUIRED SUPPORT AND HELP FOR PAIN

RELIEF, BREATHING DISTRESS AND GENERAL ANXIETY, WHICH WERE EASED WITH OXYGEN AND

MEDICATION. THE ADMINISTRATORS OF THE FACILITY AND THE NURSES WERE CLEAR ABOUT

AMALIA’S WISHES. A RESIDENTIAL CARE AIDE WAS WITH HER 24/7 IN THOSE FINAL WEEKS, WITH

NURSES OVERSEEING ALL CARE AND A PHYSICIAN VISITING EVERY OTHER DAY. HER LOVED ONES

AGREED WITH THIS COURSE OF ACTION AND SHE DIED PEACEFULLY SURROUNDED BY HER FAMILY.

SALLY

• SALLY IS 38 YEARS OLD. SHE HAS 2 TEENAGED GIRLS WHO ARE 13 AND 15. SALLY WAS DIAGNOSED WITH OVARIAN CANCER TWO

YEARS AGO AND HAS EXPERIENCED RECURRENT AND PROGRESSIVE DISEASE. AT EACH STEP OF HER ILLNESS SHE HAD ALWAYS AGREED

TO THE NEXT LEVEL OF AGGRESSIVE THERAPY. RIGHT NOW HER DISEASE IS PROGRESSING RAPIDLY AND SHE IS NOT EXPECTED TO LIVE

VERY MUCH LONGER THAN 2 WEEKS.

• SHE IS TALKING ABOUT MAKING A DRESS FOR HER DAUGHTER WHO IS GRADUATING FROM HIGH SCHOOL IN 2 WEEKS. SALLY DID

NOT GO TO HIGH SCHOOL AND IS VERY PROUD THAT HER DAUGHTER IS GRADUATING. SHE IS PLANNING TO GO TO THE CEREMONY.

SALLY’S HUSBAND IS WORKING DOUBLE SHIFTS NOW. HE IS IN THE CONSTRUCTION BUSINESS AND THERE IS A LOT OF WORK RIGHT

NOW. THE FAMILY ARE PLANNING TO TAKE A VACATION TO WESTERN CANADA IN THE SUMMER

• SALLY HAS AGREED TO TAKE THE NEXT EXPERIMENTAL TREATMENT. IN ALL LIKELIHOOD IT WILL MAKE HER ILL AND IT MAY NOT EFFECT

ANY EXTENSION OF LIFE. THE DOCTOR IS NOT CERTAIN ABOUT THE SIDE EFFECTS IT WILL BRING. IT MAY MEAN SHE WILL HAVE TO BE

HOSPITALIZED AND, IF SO, SHE IS NOT APT TO LEAVE THE HOSPITAL AGAIN.

• THE NURSE WHO SPOKE WITH HER THIS MORNING IS CONCERNED THAT SALLY DOES NOT REALIZE THE POTENTIAL IMPACT OF THE

NEW THERAPY. ALSO, SHE FOUND OUT THE DAUGHTERS HAVE NOT BEEN TOLD ABOUT THE SERIOUS OF THEIR MOTHER’S CURRENT

SITUATION.

MARTHA

• MARTHA IS 65 AND WAS DIAGNOSED WITH LUNG CANCER 8 MONTHS AGO. SHE IS MARRIED TO GEORGE WHO IS

10 YEARS YOUNGER. HE IS DEVOTED TO HER. THEY WERE MARRIED LATE IN LIFE AND DO NOT HAVE CHILDREN,

ALTHOUGH GEORGE HAS 2 FROM HIS FIRST MARRIAGE. THEY TRAVELLED EXTENSIVELY AND ALWAYS BEEN INVOLVED

WITH COMMUNITY ACTIVITIES. SINCE HER ILLNESS GEORGE HAS NOT BEEN ABLE TO PARTICIPATE IN THE EVENTS AND

STAYS AT HOME MORE AND MORE.

• MARTHA IS SO SHORT OF BREATH AND FATIGUE NOW THAT SHE IS ONLY ABLE TO GET OUT OF BED AND SIT IN A

CHAIR FOR AN HOUR IN THE MORNING AND ONE IN THE AFTERNOON. GEORGE ASSISTS WITH MUCH OF HER CARE.

SHE IS ONLY ABLE TO SWALLOW LIQUIDS, ALTHOUGH TODAY SHE COULD NOT SWALLOW HER FAVORITE CHOCOLATE

MILKSHAKE. SHE HAS INCREASING PAIN IN HER CHEST DESPITE THE MORPHINE AND IT HURTS WHEN SHE COUGHS.

• THIS MORNING MARTHA SAID TO THE HEALTH CARE PROVIDER, ‘I NEED YOUR HELP. I HAVE DECIDED TO TAKE ENOUGH

OF MY MORPHINE TO PUT ME TO SLEEP. BUT I NEED YOUR HELP TO GET READY AND KEEP GEORGE BUSY WHILE I

DRINK IT. I HAVE HAD ENOUGH OF THIS.”

WISH FOR A DIGNIFIED DEATH WITHOUT SUFFERING

• RIGHT TO REFUSE MEDICAL TREATMENT TO REQUESTING CONTROL OVER DEATH…

• THIS ISSUE IS NOT ONE OF LIFE OR DEATH. THE ISSUE IS WHAT KIND OF DEATH, AN AGONIZED

OR PEACEFUL ONE. SHALL WE MEET DEATH IN PERSONAL INTEGRITY OR IN PERSONAL

DISINTEGRATION? SHOULD THERE BE A MORAL OR DEMORALIZED END TO MORTAL LIFE?