END OF LIFE

OUTLINE  PASSIVE EUTHANASIA (indirect)

I. Issues at the End of Life o Allowing to die; allowing death
II. What makes a good death?
 VOLUNTARY EUTHANASIA
III. Decisions Regarding End of Life
a. Futility o When competent patient ask for it
b. Do not resuscitate  INVOLUNTARY EUTHANASIA
c. Withdrawing and Withholding o When others choose death for the patient
d. Killing vs Allowing to die against his will
IV. Options for terminal care
a. Home Care vs Hospice Care WHAT MAKES A GOOD DEATH?
V. The Incompetent Patient
a. Advanced directives
b. Proxy  Adequate pain and symptom management
c. Concerns regarding Incompetent Patient  Avoiding a prolonged dying process
VI. Diagnosis of Brain Death in Children  Clear communication about decisions by patient,
a. When children are dying family and physician
b. Issues on Severe Prematurity  Adequate preparation for death, for both patient and
VII. Euthanasia loved ones
a. Active Voluntary Euthanasia
VIII. Issues at the End of Life 2  Feeling a sense of control
a. Target Audience  Finding a spiritual or emotional sense of completion
b. Preparations  Affirming the patient as a unique and worthy person
c. Medical Decisions at the End of Life  Strengthening relationships with loved ones
d. What is a good death?  Not being alone
e. Goals of Health Care Decision Making
f. Critical Characteristics of Caregiver on the Last Hour of
Living DECISIONS REGARDING END OF LIFE
g. Why are physicians sometimes ineffective?
h. Communicating Bad News  Goals of health care decision-making:
i. Stages of Death o Promotion of patient's well-being - respect
j. The Last Hours for self determination
k. Volunteer Preparations o Well-being vs. Preserving life
IX. Dying and Decision Making
a. Last Resort Options for Responding to Intolerable
 Human dignity, informed consent, professional
b. Preparing for the Last Hours of Life communication
c. Pearls and Pitfalls  When to make decisions?
d. Guidelines for Communicating Bad News o Critical or terminal, will die soon, no matter
e. Physicians’ Attitude Towards Death what is done
f. Dialogue o QOL is seriously limited
g. Physician’s Support
Futility
ISSUES AT THE END OF LIFE
 A futile action is one that is useless and
ineffectual, cannot achieve its goal
 If one cannot bear to see suffering, one resorts to an
 Medically futile treatments are those that are
advanced death (EUTHANASIA)
highly unlikely to benefit a patient
 If one sees life as the highest value with death as
 ASSERTIONS
defeat or if one is overly influenced by available
o Futility can be defined using measures
technology then one does everything to prolong life
beyond one‘s time (DYSTHANASIA) that include prognosis, estimates of the
likelihood of recovery, and functional
 If one sees death as the culmination of a good life, to
status
be valued only until its natural end
o Not all medical treatments are beneficial
(ORTHOTHANASIA)
o Health professionals would never label a
 EUTHANASIA means ―good or happy death
 An action or an omission which of itself or by beneficial treatment as futile
o Futile treatments are expensive and an
intention causes death, in order that all suffering
may in this way be eliminated inefficient use of resources
 An act or omission intended to bring about death on o By addressing medical futility, patients
the grounds that life us not worth living may be more appropriately cared for
 ACTIVE EUTHANASIA (direct) with other programs, such as hospice
o Procuring death care.

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 MEDICAL ETHICS III
Lecture Title
 OBJECTIONS
o First, some people question whether
medical futility can be defined and how
to prevent futility from becoming a
judgment call made by health care staff.
o Second, there is the fear that treatments
that provide a smaller benefit – or may
not seem beneficial to health care
professionals but are considered
beneficial by patients – may be
eliminated
o Finally, the biggest concern is that
necessary treatments will be labeled
futile in order to save money. This issue
is of particular importance to some
elderly, disabled, managed care, and
socioeconomically disadvantaged
populations.
Do Not Resuscitate
 DNR orders might be issued for the following
patients:
o Patients for whom CPR may not provide
benefit.
o Patients for whom surviving CPR would
result in permanent damage,
unconsciousness, and poor quality of life.
o Patients who have poor quality of life before
CPR is ever needed, and wish to forgo CPR
should breathing or heartbeat cease.
Withdrawing and Withholding
 Bad effects of not stopping therapy:
o Overtreatment - beyond what will benefit
o Fear of being stuck to the machine - time
trial with the understanding that if
unsuccessful it will be discontinued
 Indications:
o Grave prognosis/fatal pathology
o Burdens outweigh benefits - physical,
emotional, even financial
o Life expected to be unacceptable to the
patient - cannot fulfill mission in life
Killing vs Allowing to Die
 Acts vs. omissions - Smith vs. Jones
o View no difference – Glannon
o Is all stopping life support killing?
 Motives of the killer and consent
of the victim - moral
differentiation
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 Resisting the concept of killing
as normative (vs. an unjustified
action causing death
 Lethal disease already present
 Physicians do not kill a patient by omitting treatment,
but rather the disease takes the patient‘s life.
 Patients have a right to a "death with dignity."
Allowing a dignified death to occur naturally is a
moral act, different from active euthanasia.
 Intended vs. Merely Foreseen
 Double effect
OPTIONS FOR TERMINAL CARE
Home Care vs Hospice Care
The real source of power in medicine . . . is in the
relationship, the coming together of the afflicted and the
healer, the blending of needs and goals with knowledge
and skill, so that they may come to as good an outcome
as possible. There can be no true healing without this
relationship (Hook, 1996, p. 92)
THE INCOMPETENT PATIENT
Advanced Directives
 Living will
o most direct
 Partial
 Durable power of attorney, POA for Personal Care
(POAPC, Canadian) - designate a person to make
decision
 PROBLEMS
o Few make them
o Vague and general
o Misuse/abuse
Proxy
 Principle of Substituted Judgement
o Surrogate decision considers the will of the
patient
o Best interest principle when no information
about the patient's o preference available
o Usually the closest family member:
 Best position to know what patient
wants
 Care most about patient well-being
and representing it
 Societal rule to preserve the family
o EXCEPTION
 Conflict of interest
 Estrangement
Concerns Regarding Incompetent Patient
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Lecture Title
 Advance directives may improperly influence health
care providers to limit care—leading to under
treatment.
 A person frightened of becoming disabled or
incapacitated may use advance directives to limit
treatment—when in reality a person cannot know in
advance his or her ability to cope and adapt to living
with a disability.
 Advance directives are time consuming for health
professionals, and may not be useful if a medical
treatment decision requires an immediate answer—
even if a healthcare decision-maker has been
named.
DIAGNOSIS OF BRAIN DEATH IN CHILDREN
 Caution in diagnosing brain death in children <5 yrs.
Based on the assumption that young brain has
greater capacity for recovery
 UK guidelines
o <2 months age criteria should be same as in
adults
o 37 weeks gestation-2 months: rarely
possible to diagnose brain death confidently
o <37 weeks gestation: criteria for brain stem
death cannot be applied.
 Australasian guidelines
o Neonates: waiting period of 7 days after
acute injury should relapse before testing
o <2 months: 2 examinations and an EEG
separated by at least 48h
o 2-12 months: 2 examinations and an EEG
separated by at least 24 h. Second
examination and the EEG can be omitted if
absent cerebral blood flow is demonstrated
by radionuclide angiography
o <1 year: criteria are the same as for adults
When Children are Dying
 Who Decides?
o Parents have legal rights to make
decisions for their children
o Important that children be able to
participate in decisions about their own
care.
 Family Members in Conflict:
o Parents can disagree with each other—
Divorced parents may have different
values or married parents may find that
they are in conflict over the best course
of action.
o Parents and other family members can
disagree— Grandparents actively
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involved in child raising may differ with
parents.
o Parents and child may not agree—these
conflicts can arise at any age and may
be particularly disheartening.
 When Parents Refuse Treatment from the Physician
o If a physician believes the parental refusal is
not in the best interest of the child, he or she
can seek institutional or court support
o When Parents Insist on Non-Recommended
Treatment
o What’s Best for the Child
Issues in Sever Prematurity
 Disability
 Psychological
o Emotional impact of raising a child with a
disability
o The child himself: depression, anxiety,
aggression, lower self-concept
 Financial
o US (2003) Premature newborns = US$ 18.1
billion in health care costs = half of total
hospital charges for newborn care
 Societal
o Acting in the ―best interests of the patient
 Degree of suffering involved in the
care
 Futility of further intervention
 Likelihood of survival free of serious
disability and practical
consequences
Recommendations: Australia
 Grey zone between 23-25 weeks + 6 days: option of
noninitiation of resuscitation and intensive care
reasonable
 Obligation to treat increases as the gestation
 advances
 At 25 weeks active treatment is usually offered
 Unless adverse circumstances:
o Twin-twin transfusion
o Intrauterine growth restriction
o Chorioamnionitis
o Poor condition at birth or the presence of a
serious abnormality
 At 26 weeks gestation the obligation to treat is very
high
o Non-directive counselling, avoidance of over
burdening parents
 24 weeks antenatal transfer to a tertiary center, with
option of DNR
o 23-26 weeks = grey area
o 2 components:
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Lecture Title
 To resuscitate and admit to the
NICU
 To continue with intensive care or
replace with palliative care
 Recommendations:
o At 25 weeks and above: institute intesive
care
o 24-25 weeks: offer intesive care unless
different parents‘ wishes
o 23-24 weeks: clinicians should not be
obliged to resuscitate
From: Neonatal Section Of The Irish Faculty Of
Pediatrics
 Withdrawal of care appropriate in infants born within
the threshold period who fail to respond to initial
intensive care efforts or develop severe
complications
 Acceptable not to resuscitate newborns under 500g
and/or under 24 weeks gestation
“ Natural instincts are to try to save all babies, even if the
baby‘s chances of survival are low. However, we don‘t
think it is always right to put a baby through the stress
and pain of invasive treatment if the baby is unlikely to
get any better and death is inevitable “
(Margaret Brazier, professor of law at Manchester
University)
Prolonging the life of profoundly sick premature babies
may be “inhumane” and place an “intolerable burden on
the baby”, “treatment just prolongs the process of dying”
Parent’s Recommendations:
 Counselling should initiate before delivery
 Transparency, openness and honesty
 Favor frequent discussions with parents
 Update them on
 Their infant‘s condition
 Interventions that may be needed
 Avoid confusing medical terminology as much as
possible
 Be honest and frank about the infant‘s condition and
prognosis, even on matters of uncertainty
o Terminating life is unethical in today‘s
society because there are not enough
protections that would allow for a just and
fair practice of euthanasia.
o Terminating life is always unethical because
it violates a) the moral belief that life should
never be taken intentionally or b) the basic
human right not to be killed.
 Active
o an active intervention to end life
 Passive
o deliberately withholding treatment that might
help a patient live longer
 Voluntary
o euthanasia is performed following a request
from a patient
 Non-voluntary
o ending the life of a patient who is not
capable of giving permission
 Involuntary
o ending life against a patient’s will
 Physician assisted suicide
o a doctor prescribes a lethal drug which is
self-administered by the patient.
o applies to mentally competent, terminally ill
patients who are physically capable of
independently ingesting medications.
 Suicide
o terminating one‘s own life
 Stewardship vs. absolute autonomy
o good purpose, service to God and neighbor;
prolonging life may not contribute to this
purpose - still no life is ever useless
Active Voluntary Euthanasia
 Slippery slope - the Nazi path
 Increase vulnerability of frail and debilitated
 Bad image for medicine
 Physician conflict of roles esp. as care giver of dying
ISSUES AT THE END OF LIFE 2
Target Audience

EUTHANASIA  General Audience

 Caretakers
 Different ethical and moral positions and arguments:  Care Volunteers
o Terminating life at the request of an
individual is not immoral because it is the Preparations
individual‘s decision to make.
o Terminating life may be justified in some  Spiritual
circumstances if, and only if, there is  Financial
compelling evidence that to continue living  Emotional
would be more harmful to the person than  Relational
dying.  Legacy
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 MEDICAL ETHICS III
Lecture Title
 Living a good life  Care during those last hours and days have
 Fulfill one’s purpose/calling profound effect on the patient and all who
participate; there is no second chance to get it right
Medical Decisions at the End of Life  Most clinicians have no formal training in managing
the dying process and death
 Proxy  Families have even less experience or knowledge
o Surrogate or best interest  It is possible to provide smooth passage and comfort
 Palliative for the patient and those who watch
o Hospice vs. Home Care
o Relief of symptoms vs. Active treatment of Why are Physicians Sometimes Ineffective?
underlying disease
 Ordinary vs Extra-ordinary care  Taught to cure: biophysical vs. Care: psychosocial,
o Required/standard vs. costly, unproven, hi- spiritual and community orientation
tech  Function of maturity
 Standard o Acceptance of death as normative,
o Complementary /Alternative Medicine owning mortality emotional/spiritual
o Effectivity, harms, cost preparation
 Stopping Treatment  Skills were not developed in training
o Refusal of necessary treatment o Not part of the curriculum, goal to save
o Withdrawing/Withholding lives
o Do not resuscitate (DNR)  Competence
o Think of death as failure
o Home against advice
o Certainty, avoidance
What is a Good Death?
Communicating Bad News
 Adequate pain and symptom management
 Setting
 Avoiding a prolonged dying process
 Baseline understanding
 Clear communication about decisions by patient,
family and physician  Warning shot
 Adequate preparation for death, for both patient and  Telling the news
loved ones  Empathic response to emotions
 Feeling a sense of control  Concluding with a plan
 Finding a spiritual or emotional sense of completion  Repeat
 Affirming the patient as a unique and worthy person
Stages of Death
 Strengthening relationships with loved ones
 Not being alone
1. Acute Crisis Phase
 Shock
Goals of Health Care Decision Making
 Kubler Ross stages of loss and grief
 Promote patient's well being  Denial, Anger, Bargaining, Depression,
Acceptance (DABDA)
 Preserve human dignity
2. Awakens unresolved issues
 Respect self determination
3. Chronic Living-Dying Phase
o Informed consent/professional
 Fears:
communication
 Unknown, loneliness, loss of relationships, loss
of body (selfimage, integrity) loss of self-control,
Critical Characteristics of Caregiver in the Last Hour
suffering and pain, loss of identity
of Living
4. Terminal Phase
 Physical withdrawal, decreased anxiety,
 Clinical competence
depressive symptoms, emotional disorganization
 Willingness to educate
 Changed hope, expectant - desire, acceptance,
 Calm, empathic reassurance
peace
 <10% die suddenly, 90% after a long period with
gradual deterioration Last Hours

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 MEDICAL ETHICS III
Lecture Title
 Continuous skilled care in which it is applied to other life
 Appropriate preparations for caregivers sustaining treatments.
o Patient's health status and goals of care  Thus, if a dying patient receiving
o Knowledge of the dying process nutrition and hydration suffers
o Symptoms and management burdens that outweigh the benefit of
o Support for families, distressing symptoms extended life, artificial nutrition and
hydration may be ethically withheld
o Performing basic tasks
or withdrawn – whether or not the
 Environment conducive to access with privacy and patient will die as a result of this
intimacy action.
 Medications, equipment and supplies Option Ethical Decision
 Regular reassessment and revision of plan of care Consensus Maker
 Inherent unpredictability of the moment of death Proportionately Consensus Patient
intensive Surrogate
Volunteer Preparations symptom
management
 Internal Work Stopping or not Consensus Patient
o Accept death as normative starting Surrogate
o Examine own values and beliefs, feeling and potentially life –
questions about o death and suffering sustaining
o Looking at own life and relationships therapy
 Remembrance, celebration and Sedation to Uncertain Patient
mourning unconsciousness Surrogate
 Listening Skills to relieve
o Each person's story as unique and precious intractable
o Listening for feelings, hopes, dreams and symptoms
maybe words as well Voluntarily Uncertain Patient only
o Dealing with negative emotions - shame and stopping eating
guilt, grief and o loneliness, fear and anger and drinking
o Understanding the power of presence Physician- Uncertain Patient only
assisted suicide
DYING AND DECISION MAKING
THE LAST HOURS OF LIVING: PRACTICAL ADVICE
 Suggests that excellent end-of-life care have FOR CLINICIANS by Linda Emanuel, Frank D. Ferris,
become better defined; they include: Charles F. von Gunten, Jamie H. Von Roenn
 Palliative care for all severely ill patients to maximize
their quality of life as an integral part of their overall  Critical characteristics to helping patients and
treatment plan families in the last hours of living:
 Seamless transition into hospice programs if and o Clinical competence
when palliation becomes the primary objective, and o Willingness to educate
 Clarity about the availability of last-resort options if o Calm and empathic reassurance
suffering becomes intolerable despite  Of all patients who die < 10% die suddenly and
comprehensive caring efforts. unexpectedly; < 90%) die after a long period of
 PERSISTENT VEGETATIVE STATE (PVS) illness, with gradual deterioration until an active
o State in which there is "complete dying phase at the end.
unawareness of the self and the  Care provided during those last hours and days can
environment, accompanied by sleep-wake have profound effects, on the patient and on all who
cycles, with either complete or partial participate.
preservation of hypothalamic and brain-stem  “At the very end of life, there is no second chance to
autonomic functions." get it right.”
 NUTRITION and HYDRATION  Most clinicians have little or no formal training in
o Part of treatment vs. part of comfort care managing the dying process or death.
o Principle of Proportionality  Families usually have even less experience or
 May be applied to artificial nutrition knowledge about death and dying.
and hydration in the same manner

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 MEDICAL ETHICS III
Lecture Title
 With appropriate management, it is possible to
provide smooth passage and comfort for the patient
and all those who watch.
Preparing for the Last Hours of Life
 During the last hours of their lives, most patients
require a continuous skilled care.
 The professional, family, and volunteer caregivers
need to be appropriately prepared and supported
throughout the process.
 Environment - allow family and friends access,
should be conducive to privacy and intimacy.
 Medications, equipment, and supplies need to be
available.
 Patient must be reassessed regularly and the plan of
care modified as needed.
 While it is possible to give families or professional
caregivers a general idea of how long the patient
might live, always advise them about the inherent
unpredictability of the moment of death.
 Advance preparation and education of professional,
family, and volunteer caregivers are essential in all
settings.
o Awareness of the patient's health status,
his or her goals for care (and the
parents' goals if the patient is a child),
advance directives, and proxy for
decision making.
o Knowledge about the potential time
course, signs, and symptoms of the
dying process, and their potential
management.
o Support for families, help them to
understand that what they see may be
very different from the patient's
experience.
 Do not assume that anyone, even a professional,
knows how to perform basic tasks. Those who are
inexperienced in this particular area will need
specific training in areas such as body fluid
precautions. Written materials can provide additional
support to caregivers when experts are not present.
Preparing for the Last Hours of Life
 PEARLS for quality care include:
o Use only essential medications. Stop routine
dosing and continue to offer opioids as
needed. Accumulating serum concentrations
of active drug and metabolites may lead to
toxicity and terminal delirium.
o Know the signs of the dying process.
o Make a partnership with the patient and the
family caregiver(s); draw them into the
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interdisciplinary team and foster their active
participation in the care plan.
 Common PITFALLS include:
o Maintaining parenteral fluids. Continuing
fluids may have adverse effects that are not
commonly considered
o Oropharyngeal suctioning. While suctioning
is likely to be ineffective at clearing
secretions, it may be very effective at
stimulating a gag, cough, or vomiting.
o Removing the body insensitively or too
soon. This can be more distressing for
families than the moment of death.
Guidelines for Communicating Bad News
 Get the setting right
 Ask what the person understands
 Provide a "warning shot―
 Tell the news
 Respond to emotions with empathy
 Conclude with a plan
Physician’s Attitude Towards Death
 Internal work
o acceptance of death as normative
o optimum cure
o optimum care
o Accepting my own mortality - the physician
is human, what does it mean to be human?
o Looking at your own life so far -
remembrance, celebration and mourning
o Examining values and beliefs - what is death
to me?
o what is the meaning of suffering
o Examining feelings about death dying and
suffering
o Spirituality - existential questions
o Relationships
Dialogue
 Listening Skills, support system
 Discussion of diagnosis, prognosis
 Patient's preferences
 Involvement of family
 Advanced care planning
 Continuing communication
 Each person has a story, and that story is precious
 Not primarily information but feelings, hopes,
dreams, nonverbal communication
 Dealing with negative emotions - fear, anger and
rage, shame and guilt, sadness and grief
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Lecture Title
 Patience, long enough for insight to come
Physician’s Support  Genuineness
 Vulnerability
 Where is your safe place? Who can you talk to?  Dialogue
 Befriend a dying person, visit this patient once a  We also need to say words
week and talk about… everything, anything  Shared inquiry, intent is exploration, discovery,
 Suggested format for ‘de-toxifying’… insight; but open to mystery
 “I-though” encounter
 Respect, seeing a person of worth, dignity, depply
loved and made in the image of God
Initial Follow-up
 Non- manipulative, honors separateness, shares
both heart and head
1. Start with Silence 1. Start with Silence
2. Each one to answer 2. One share: I have this
the questions: what does patient.. (tell the story,
death mean to me? don’t present the case)
3. Silence 3. Silence
4. Each on to share: I 4. Questions from the
have group: ex. how do you
experience this feel, what are your hopes
experience of death or I for this patient, what has
never had an experience this patient taught you
of death… and I, this is about life, how have you
how I feel about death… connected with this
5. Silence patient, what have you
6. Open response to the given to this patient and
sharing - I felt.., I the family?
sensed.., I was 5. Silence
encouraged by.. 6. Encouragement from
7. Silence the group (remember, this
8. Open discussion is not a case conference)
7. Silence
8. Repeat process for the
next person
9. It is not required that all
share
10. Open discussion

The Gracious Host: The Gift of Hospitality

 Making space for another

 Preparation
 Our own inner order
o Stillness
 Letting go of preoccupations and distractions
o Safety
o a place of grace
o a place of acceptance and trust
 Love
o the real motivation for hospitality, real
people require real love
 Presence
 Unique, sharing something from my deepest self
 Attentiveness
 Listening

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