2012
Marek Vácha
ADVANCE DIRECTIVES
PREVIOUSLY EXPRESSED WISHES OF PATIENTS
René Descartes
 ...that we could be free of an infinitude of
maladies both of body and mind, and even
also possibly of the infirmities of age, if we
had sufficient knowledge of their causes,
and of all remedies with which nature has
provided us.
 René Descrates: Discourse on Method,
Part VI.)
Reasons for opening the discussion
Formerly
active life
Now
active life
diaseases
and dying
death
disease and dying
death
Because of medicine we have today a little bit longer the active life, but
proportionally much longer the time of diseases, staying in the hospitals
and dying
Four Principles of Medical Ethics


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Nonmaleficence
Beneficence
Autonomy
Justice
Autonomy
 people have the same moral authority
over their future affairs that they have over
their current affairs - it is simply extended
forward
Autonomy
 Patient has the right, as a competent adult, to refuse
any proposed treatment, even if doing so may mean
that he/she will become sicker or even die.
 If a competent person is sick, our legal tradition
recognizes that he must want to be made well; the
state cannot force him to have an operation or take
his medication.
Advance Care Planning
 = process whereby a patient, in
consultation with healthcare providers,
family members, and important others,
makes decisions about his or her future
healthcare
 „Every human being of adult years and
sound mind has the right to determine
what shall be done with his own body.“
(Benjamin Cardozzo´s statement, 1914)
USA
 state laws allow individuals to complete
advance directives documents and to
name healthcare decision makers
 federal law requires all patients admitted
to hospital to be notified of this right
 most european countries have followed
suit with provisions for advance care
planning
LIWING WILL
Living Will
HEALTH CARE PROXY
 the scope of surrogate´s powers can be
as broad or marrow as the person
executing athe power of attorney likes
 a health care power of attorney is often
combined with a living will
 in general the surrogate decision maker
must decide according to the substituted
judgment principle
 to decide as the patient would if he or she
were now competent
Surrogates appointed without a power of attorney
 many states in USA have "family consent"
statutes, which specify a relative or
relatives to act as surrogate decision
maker. Although theses surrogates are
not appointed under advance directives,
their role is much the same as surrogates
appointed under a health care power of
attorney.
Health Care Proxy
 in association with passage of the Patient Self-
Determination Act (1990) laws has been passed
that enable individuals to designate the person
they wish to make healthcare decisions for them
once they lose decision-making capacity
 in addition, laws pertaining to informed consent
have given family members the right to make
decisions on behalf of incapacitated patients
 an alternative to family-based substitute decision
making is using the courts, such as assigning a
court-appointed guardian. This mechanism
exists in both USA and Canada
Decision Makers
USA
 if no healthcare agent is authorized and available, the
practitioner must make a reasonable inquiry as to the
availability of other possible surrogates according to
the order of priority








legal guardian
spouse
adult child
parent
sibling
grandparent
grandchild
close friend
 (Veterans Health Administration, 2003)
Decision Makers
 when patients are asked who they would
want to represent them, the majority opt
for their own family members

(Singer, P.A., Viens, A.M., (eds.) (2008) The Cambridge Textbook of Bioethics. Cambridge University
Press, p.60)
Patients at increased risk for losing decisionmaking capacity
 These high risk situation include:
 early dementia
 history of stroke
 health conditions that predispose to a future stroke





(e.g. uncontrolled hypertension)
health conditions that predispose to delirium (e.g.
frailty, advanced age)
terminal illness
recurrent severe psychiatric illnesses (e.g. severe
dementia, mania, psychosis)
families with conflicts
social isolation (e.g. no family members or close
friends)
Health Care Proxy
 = a substitute decision maker
 the criteria on which the decision should
be based are:
 the specific wishes previously expressed by
the patient
 if specific wishes are not known, the patient´s
known values and beliefs
 if neither specific wishes or values and beliefs
are known, the patient´s best interests
PROBLEMS
Substituted judgement and best interests
 Substituted judgements
 liwing will, advanced directives
 without an advance directive, a proxy may then refer to
the patient´s values, both implicit and explicit,
regarding worldview (including religious beliefs),
lifestyle, and health care.
 Best interests
 in many cases, a proxy may not have any information a
bout a paataient´s values (infant, young children,
mentally disabled adults)
 health is preferable to ilness, and life is preferable to
death
Order of Priority
1. current express preferences of a
competent patient (informed consent)
2. past express preferences (living will)
3. what the patient would now want if
he/she were competent (substituted
judgment)
4. best interest
Davis, J.K., (2009) Precedent Autonomy and End-of-Life Care. in Steinbock, B., (ed) The Oxford Handbook of
Bioethics. Oxford University Press, Oxford.
Problems
 advance care planning has not been as
successful as proponents would wish
 some patients change their views as time
passes
 others request life-prolonging interventions
that subsequently prove to be unrealistic
 substitute decision makers are not always
sure that a patient´s situation is equivalent to
that described in an advance directive
Problems
 people cannot foresee their futures well
enough to make informed decision in
advance
A twenty-eight-year-old man decided to terminate chronic renal dialysis because of
his restricted lifestyle and the burdens on his family. He had diabetes, was legally
blind and could not walk because of progressive neuropathy. His wife and
physician agreed to provide medication to relieve his pain and further agreed not to
put him back on dialysis even if he requested this action under the influence of
pain or other bodily changes. (Increased amounts of urea in the blood which restlt
from kidney failure, can sometimes lead to altered mental states, for example).
While dying in the hospital, the patient awoke complaining of pain and asked to be
put back on dialysis. The patient´s wife and physician decided to act on the
patient´s earlier request not to intervence, and he died four hours later.
Beauchamp, T.L., Childress, J.F., (2009) Principles of Biomedical Ethics. 6th ed.
Oxford University Press, Oxford and New York, p. 110
CASE REPORTS
65-year-old woman
 In one of the earliest case, a 65-year-old
woman was admitted for surgery to correct a
clogged artery. She knew this could lia to a
disabling stroke, and her living will said:
 "If there is no reasonable expectation of my
recovery from physical or mental disability, I
request that I be allowed to die and not be
kept alive by artificial means or heroic
measures. I do not fear death itself as much
as the indignities of deterioration,
dependence, and hopeless pain"
65-year-old woman
 The day before surgery, she told her surgeon
she wanted the living will followed if she had
a stroke, and said "she felt life was worth
living only if she could be healthy and
independent."
 Soon after surgery, a stroke left her with a
profound neurological deficit and a few days
later she developed a breathing problems.
 Her doctors had to decide whether to follow
her living will and let her die.

Davis, J.K., (2009) Precedent Autonomy and End-of-Life Care. in Steinbock, B., (ed) The Oxford Handbook of
Bioethics. Oxford University Press, Oxford.
World Medical Association Declaration on the Rights of the
Patient Adopted by the 34th World Medical Assembly, Lisbon, Portugal,1981
 The unconscious patient
If the patient is unconscious or otherwise unable to
express his/her will, informed consent must be
obtained whenever possible, from a legally entitled
representative.
 If a legally entitled representative is not available, but a
medical intervention is urgently needed, consent of the
patient may be presumed, unless it is obvious and
beyond any doubt on the basis of the patient's previous
firm expression or conviction that he/she would refuse
consent to the intervention in that situation.
 However, physicians should always try to save the life
of a patient unconscious due to a suicide attempt.
Persistent Vegetative State (PVS)
 = a clinical condition of unawareness of
self and environment in which the patient
breathes spontaneously, has a stable
circulation, and shows cycles of eye
closure and opening which may simulate
sleep and waking
 the vegetative state has to have endured
for at least one month in order for it to be
considered persistent The Multi-Society Task Force on PVS,
"Medical Aspects of the Persistent Vegetative State," New England Journal of Medicine 330
(1994)
PVS
 the patient is not comatose; she is awake but
unaware
 clinically, PVS suggests the irreversible loss
of all neocortical function
 generally, brain stem functions remain, and
patient can breathe on their own
 they do not match the criteria of brain death,
inasmuch as they have
 elicitable reflexes,
 spontaneious respiratins, and
 reaction to external stimuli
PVS
 three months in cases of PVS following
cardiac arrest
 six months for patients under forty with
head injuries
 twelve months for patients under twentyfive with head injuries
PVS
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No coma
Can breathe normally
Preserved brain stem reflexes
Preserved hypothalamic function (body
temperature, vascular tone, ..)
Rich motor activity (unpurposeful, inconsistent,
smile, cry, moan, grunt, scream)
No “respirator brain”
Can be partially or totally reversible
When there is no recovery after a specified
period(3–12 months, depending on aetiology)
the state can be declared permanent
Life
 biological life
 is not uniquely human; it is the life we share with
the trees, bugs, deers etc.
 život v darwinovském smyslu, který sdílíme s
opicemi a rostlinami
 biographical life
 weddings, events, relationships
 ...what makes us uniquely human
 můj osobní život s tragédiemi a radostmi, popsaný
v básních, krásné literatuře, moje osobní tápání,
lásky a nenávisti...
Differences in brain metabolism measured in brain death and the vegetative state,
compared with healthy subjects. Patients in brain death show an ‘empty-skull sign’,
clearly different from what is seen in vegetative patients, in whom brain
metabolism is massively and globally decreased (to 40-50% of normal values) but
not absent.
Life
 With current teachnology we can often
sustain life in a biological sense, but we
cannot restore individuals to an awareness of
themselves or others.
 In many cases, an individual may survive for
years without gaining consciousness
Born - Departed - At peace
Nancy Cruzan
Nancy Cruzan
right to die?
At first glance, the Court´s decision in Cruzan
disappointed proponents of a right to die
because it upheld the decision of the
Missouri Supreme CourtL it held that
Missouri´s interest in safeguarding life
allowed it to demand clear and convincing
evidence that the incompetent person truly
wished to withdrraw from treatment, evidence
that in Nancy´s case was lacking.
Nevertheless, the reasoning of the majority
decision was widely interpreted as conceding
such a right to die for a competent person.
Nancy Cruzan
right to die?
Chief Justice William Rehnquist reasoned that
"the principle that a competent person has a
constitutionally protected liberty interest in
refusing unwanted medical treatment" may
be inferred from our previous decisions.
Karen Ann Quinlan
(1954 – 1985)
Karen Ann Quinlan
(1954 – 1985)
 This case established the precedent that lifesustaining treatment could be removed if the care
were futile (no hope for ecovery) and if there were
proxy consent.
 Quinlan shocked her family and physicians, however,
by breathing on her own after the ventilator was shut
off.
Donald Dax Cowart
 In 1973, Donald Cowart was critically injured in a
propane gas explosion, that caused severe
burns over sixty-five percent of his body.
 For more than a year, he objected to the painful
treatments that he was receiving. Cowart was
physically incapable of ending his own life, since
his hands had been severely damaged in the
accident, but he made repeated verbal requests
that he be allowed to die, or that someone help
him end his own life.
Donald Dax Cowart
 Despite his protestation, his doctors and
his mother continued to provide treatment,
including a number of paonful skin graft
surgeries.
 Cowart survived the ordeal and is still
alive today, but insists that hed should
have been allowed to die.

(Pierce, J., Randels, G., (2010) Contemporary Bioethics. A Reader With Cases. Oxford
University Press, Oxford and New York, p. 115)
Baby K.
(1992 – 1995)
Terry Schiavo
3/12 1963 – 31/03 2005
Terry Schiavo
03/12/1963 – 31/03/2005
 Born December 3, 1963
 Deaperted this Earth
February 25, 1990
 At Peace March, 31,
2005
Eluana Englaro
1972 - 2009
 in a persistent vegetative
state since being injured
in a car crash in 1992.
 In July 2008, a court in
Milan ruled that doctors
had proved Ms Englaro's
coma was irreversible.
 It also accepted that,
before the accident, she
had expressed a
preference for dying over
being kept alive artificially.
Eluana Englaro
1972 - 2009
 Eluana Englaro, the comatose woman at the
centre of a euthanasia debate that divided Italy
and sparked a constitutional crisis, died on Feb
9 2009 at the age of 38, four days after doctors
began to remove her life support.
 She had been in a vegetative state for 17
years after a car accident. Ms Englaro’s father
had been fighting for a decade for a dignified
end to his daughter’s life in accordance with
what he and her friends have testified were her
own wishes. At his request, doctors at a clinic
in Udine stopped feeding.
Eluana Englaro
1972 - 2009
 Italy's Prime Minister Silvio
Berlusconi drafted a decree to
prevent doctors from letting her
die, but President Giorgio
Napolitano refused to sign it.
 Italy does not allow euthanasia.
Patients have a right to refuse
treatment, but they are not
allowed to give advance
directions on the treatment they
wish to receive if they become
unconscious.
FURTHER COMMENTS
Euthanasia
„Dutch definition of euthanasia“
 =the intentional termination of the life of a
patient at his request by someone other
than the patient
Protecting human rights and dignity by taking into account
previously expressed wishes of patients
25 January 2012
 5. This resolution is not intended to deal
with the issues of euthanasia or assisted
suicide. Euthanasia, in the sense of the
intentional killing by act or omission of a
dependent human being for his or her
alleged benefit, must always be
prohibited. This resolution thus limits itself
to the question of advance directives,
living wills and continuing powers of
attorney.

http://www.assembly.coe.int/Mainf.asp?link=/Documents/AdoptedText/ta12/ERES1859.htm
Trace of Thought Is Found in
‘Vegetative’ Patient
Dobrovolník či pacient má myslet na pohybovou aktivitu (hraní tenisu), když
chce říci „ano“ a má se uvolnit nebo myslet na prostorovou aktivitu (procházení
se po ulicích), chce-li říci „ne“
Trace of Thought Is Found in
‘Vegetative’ Patient
 A two-way channel to an immobilized, severely
brain-injured person also opens up a world of
ethical challenges.
 “If you ask a patient whether he or she wants to
live or die, and the answer is die, would you be
convinced that that answer was sufficient?” said
Dr. Joseph J. Fins, chief of the medical ethics
division at Weill Cornell Medical College in New
York. “We don’t know that.
 Their answer might be ‘Yes, but’ — and we
haven’t given them the opportunity to say the
‘but.’

http://www.nytimes.com/2010/02/04/health/04brain.html?ref=health
Futile Treatment
 quantitative futility
 a treatment is capable of producing a result,
but extremely unlikely to do so
 recovery is "impossible" or "virtually
impossible"
 qualitative futility
 the problem lies not in the low probabilities,
but when there are questions about the value
of the end result ("lacking in purpose")
"Good"
 how much longer life is an unqualified good
for an individual?
 how much more life is good for us as
individuals, other things being equal?
 the simple answer is that no limit should be set.
 life is good, death is bad
 some, of course, eschew any desire for
longer life
 they profess still more modest claim:
 not adding years to life, but life to years
 no increased life span, but only increased health
The problem of boredom and tedium
 if the life span were increased - say by
twenty years - would the pleasures of life
increase proportionately?
 would professional tennis players really enjoy
playing 25 percent more games of tennis?
 would the Don Juans of our world feel better
for having seduced 1 250 women rather than
1000?
The problem of boredom and tedium
Leon Kass
 To know and to feel that one goes around
only once, and that the deadline is not out
of sight, is for many people the necessary
slur to the pursuit of somenting
worthwhile. To number our days is the
condition for making them count and for
treasuring and appreciating all that life
brings
The problem of boredom and tedium
Leon Kass
 Homer´s immortals, for all their eternal
beauty and youthfulness, live shallow and
rather frivolous lives, their passions only
transiently engaged, in first this and then
that.
 they live as spectators of the mortals,
who by comparison have depth,
aspiration, genuine feeling, and hence a
real centre to their lives.

Kass, L.R., (1983) The Case for Mortality. The American Scholar 52, no.2:173-191 in
Pierce, J., Randels, G., (2010) Contemporary Bioethics. Oxford University Press, NY,
Oxford. p. 147-154)
The problem of boredom and tedium
Leon Kass
 Homer´s immortals, for all their eternal
beauty and youthfulness, live shallow and
rather frivolous lives, their passions only
transiently engaged, in first this and then
that.
 they live as spectators of the mortals,
who by comparison have depth,
aspiration, genuine feeling, and hence a
real centre to their lives.

Kass, L.R., (1983) The Case for Mortality. The American Scholar 52, no.2:173-191 in
Pierce, J., Randels, G., (2010) Contemporary Bioethics. Oxford University Press, NY,
Oxford. p. 147-154)
The problem of boredom and tedium
Leon Kass
 It is probably no accident that it is a
generation whose intelligentsia proclaim
the meaninglessness of life that embarks
on its indefinite prologation and that seeks
to cure the emptiness of life by extending
it.