Clinical (medical) ethics WHOLE course (2020)

MEDICAL ETHICS COURSE
Prince Sattam bin
Abdulaziz University MBE
Program

COURSE OBJECTIVES AND
OUTLINEThe aim of this course is to: 1)
Introduce the students to the main
ethical issues encountered in
clinical practice; and to 2) equip
the students with the theoretical
tools and practical skills to
identify, analyze and give
informed advice about these
issues.
Outline & Main Topics:
1. Ethical theories (revision)
2. Doctors’ professional
relationships and duty of care
3. Patient autonomy and consent
to treatment
news
5. Privacy and confidentiality
6. Ethical issues in reproductive
health, Abortion, & Assisted
conception
7. Medical negligence Medical
malpractice and medical errors
8. Terminally incurable diseases
and end-of-life decisions
9. Resource allocation in clinical
settings
10.How to resolve ethical issues in
clinical practice?
Elective topics: Organ donation -

MAIN REFERENCES
https://plato.stanford.edu/contents.html

QUESTION FOR DISCUSSION
Bioethical dilemmas far extend beyond that which was originally envisaged between doctor and patient

TAXONOMY OF THEORIES - NORMATIVE
THEORY
I. Normative Ethical Theory
The point of the traditional rubric of “normative ethical theory” is
most often to justify one's judgments bearing on the rightness or
wrongness of various individual actions or social policies.
Examples:
Should Doctor Dan lie to his patient in order to facilitate her recovery or
induce her to accept what he regards as beneficial surgery?
Should the various states legally permit physician-assisted suicide?
Who should have first priority on scarce vaccines in the face of pandemic
influenza?

THEORY
II. Virtue ethics
Normative ethics also deals with questions bearing on what kind of people we
should be.
Instead of focusing on the grounds and criteria of right and wrong conduct
(i.e., the what of ethics), virtue ethics focuses on the quality of moral agency
(or the who of ethics).
This variety of ethical theory ponders the nature of the virtues and their
manifestation in virtuous moral agents.
In bioethics, virtue ethics has often focused on the virtues of the good
physician or nurse, including conscientiousness, technical skill, empathy,
courage, truthfulness, dedication to the patient's good, and justice (Pellegrino
1993, Drane 1995).

THEORY
III. High moral theory
Normative ethical theories vary considerably in terms of their aspirations towards
generalization, universality, abstractness, systematic organization, simplicity, and
comprehensiveness
High moral theory attempt to embody most or all of these defining characteristics.
Thus classical utilitarianism, Kantian deontology, and Rawlsian justice as fairness,
for example, all strive for the articulation of a theoretical system based upon a small
number of abstract fundamental principles (e.g., Mill's principle of utility, Kant's
categorical imperative, and Rawls's famous two principles of justice) that they regard
as the “keys” to understanding the moral or political life.

THEORY
IV. Common morality theories
Whereas pluralistic moral theories are defined in terms of the number and kind of
basic moral norms they defend, common morality theories focus on the
ultimate source of our principles, rules, and ideals.
Both of these approaches trace that source to a common morality supposedly shared
by all people of good will.
Such theories encompass moral rules, principles and ideals that address a host of
disparate consequentialist and deontological moral concerns bearing on killing,
lying, beneficence, justice, etc.

CONSEQUENTIALISM
Consequentialism: Balances favourable and unfavourable consequences;
the more favourable the consequences of an act, the more the act
should be encouraged.
Definition
‘A consequentialist is someone who thinks that what determines the
moral quality of an action are its consequences’. R.M. Hare
Consequentialism therefore appears a favourable ethical theory to apply
as one simply considers which course of action has the most desirable
consequences.
Utilitarianism is a form of consequentialism and considers the moral
value of the act according to its consequences, so that if the outcome
produces happiness, the act must be morally favourable.

Act utilitarianismJeremy Bentham (1748–1832) and John Stuart Mill (1806–73)
The moral value of the act is
judged according to its social
utility.
JS Mill referred to utilitarianism as
‘the greatest happiness principle’.
Bentham was a philosopher and
reformer who wrote The Principles
of Morals and Legislation 1789,
he formulated a formula or ‘felicific
calculus’ where pain and pleasure
is measured by consideration of
the following principles shown in
the table.
Intensity
How strong will the pleasure of an
act be?
Duration How long will the pleasure last?
Certainty How certain is the pleasure?
Propinquity How soon will the pleasure occur?
Fecundity
The probability that the pleasure
will reoccur.
Purity
The probability that pleasure will
not be followed by pain.
Extent
The extent to which people will be
affected.

RULE UTILITARIANISM
To help determine the best possible outcome, a set of rules
can be applied.
The rule that creates the best consequences is the one that
should be morally adopted. If the rule states that one should
not kill, this is a morally superior rule. But self-defence
permits us to kill in certain circumstances.
Rule utilitarianism would not consider killing on the
grounds of self defence to be morally acceptable.
John Stuart Mill referred to a form of weak rule utilitarianism
which permits the rule not to be followed if greater
happiness or pleasure is achieved by abandoning the rule.

A QUICK TASK: CRITIQUE
UTILITARIANISM
Pros (in clinical settings) Cons (in clinical settings)

A CLASSICAL EXAMPLE
oif we kill one healthy hospital visitor, and use their organs to save the lives
of five patients, utilitarianism may well be satisfied but social injustice is
outraged.
oAlthough the five patients may all recover satisfactory which in turn would
create happiness for their family and friends, the healthy patient’s
autonomous wishes have been overlooked and the application of this
scenario makes utilitarianism morally unacceptable.
oFocusing on the consequences of an act in order to determine its ethically
acceptability can ignore fundamental principles of justice.

DEONTOLOGY
 Deontology concerns itself with the rights and wrongs of an act.
 An approach which considers whether an act is either right or wrong is a
deontological approach.
 Deontology states that murder is not ethically permissible because it is
inherently wrong. When considering whether an act should be morally
adopted, one should not consider the consequences of the act but the
duties or rights.
 Deontology is not concerned with the individual himself or the effect of the
act on the individual; it simply focuses on the rights and duties of the person
performing the act.

DEONTOLOGY
Immanuel Kant, set out the Categorical Imperative in Groundwork of the Metaphysic of Morals 1789,
a formulae for guiding moral principles:
• ‘Act according to that maxim whereby you can at the same time will that it should be a universal law.
• Act in such a way that you treat humanity, whether in your own person or in the person of any other,
never merely as a means to an end, but always at the same time as an end.
• Therefore, every rational being must so act as if he were through his maxim always a legislating
member in the universal kingdom of ends’.
 Since there is no focus on the individual, we are obliged to act a particular way because it is right to
do so, or we have a duty to do so.
 It is a theory that suggests mutual respect as we should only treat another person in a way we would
like to be treated ourselves, guided morally by our own ethical judgment of what is right and what is
wrong.
 Above all, Kant explains that we should never treat a person solely as a means to an end.

A QUICK TASK: CRITIQUE
DEONTOLOGY
Pros (in clinical settings) Cons (in clinical settings)

PRINCIPLISM
Principlism relates to a set of four principles that are designed to represent the
basis of resolving bioethical dilemmas. The four principles are:
• Respect for autonomy
• Non malfeasance
• Beneficence
• Justice.
Principlism seeks to combine the four principles which, according to
Beauchamp and Childress act as a framework ‘that expresses the general
values underlying rules in the common morality’.
The idea is that these four rules could underpin any bioethical dilemma as
they simply represent principles shared by all.
Although the principles are not weighted in significance and are all designed to
have equal measure, it is often believed that the principle of autonomy is of
fundamental importance to both modern medicine and bioethical dilemmas.

AUTONOMY
We have free will to determine our future and can lead our lives as we
choose.
Autonomy is not simply have the free will to make decisions but: ‘at a
minimum, self-rule that is free from both controlling interference by others and
from limitations, such as inadequate understanding that prevent meaningful
choice’. (Beauchamp & Childress)
This theme of self-determination is reflected in common law. In, Cardozo J
stated:
‘every human being of adult years and sound mind has a right to determine
what shall be done to his body’. (Schloendorff v New York Hospital (1914)

BENEFICENCE VS. NON-
MALEFICENCE Non-maleficence
The principle of non malfeasance means ‘above all do no harm’.
One of the basic tenets of the Hippocratic Oath is not to cause harm. But the term
‘harm’ may be harm to define.
Requires an intention to avoid needless harm or injury that can arise through acts of
commission or omission. Can be considered “negligence” if we impose a careless or
unreasonable risk of harm upon another.
Beneficence
Beneficence requires a medical professional to act in a patient’s best interests, to do
‘good’, and promote a patient’s wellbeing beyond all else.
Example: euthanasia (the intentional killing of a patient for his or her supposed
benefit, conducted as a way of relieving the patient from unbearable suffering of a
medical condition)
would conflict with the principle of beneficence as the doctor would not be acting with the patient’s well-being
in mind.
The same would apply for non-malfeasance as the principle requires doctors not to harm their patients.

CASE
Enid is elderly and suffers from a terminal condition. She has
limited quality of life. She suffers constant pain despite
excellent palliative care. She makes repeated requests to her
doctor to help her end her life. Euthanasia is unlawful and the
doctor refuses to help.
Despite the illegality of euthanasia, is her doctor acting
beneficently by failing to respect her autonomous wish?
Can one legitimately argue that harm is being imposed upon
her by not respecting her request?

JUSTICE
Although more difficult to define, justice refers to fair and equal treatment
Distributive justice implies that all patients should have equal access to healthcare
but where rationing exists and MOH facilities differ, this may not be easy to achieve.
Questions about justice:
 What is considered relevant to distributive justice (income, wealth, opportunities,
jobs, welfare, utility, etc.)?;
 To whom it applies? in the nature of the recipients of the distribution (individual
persons, groups of persons, reference classes, etc.); and
 on what basis the distribution should be made (equality, maximization, according to
individual characteristics, according to free transactions, etc.)?

MCFALL V SHIMP (1978)
The court had to decide whether to order forcible extraction of bone marrow from the
defendant to help save his cousin’s life. Shimp was a tissue match, had initially consented but
then withdrew his consent.
• M needed a bone marrow transplant.
• S, M’s cousin was a suitable match.
• S initially consented but then withdrew his consent.
• M applied to the court to compel S to donate bone marrow.
• The courts refused M’s application.
• M died.
How would you approach this case from utilitarian/deontological/principlistic
approach?
The judge indicated that indeed, although M lost his life, arguably greater harm would be
caused to society as
‘. . . (forcible) extraction of living body tissue causes revulsion to the judicial mind. Such would
raise the specter of the swastika and the inquisition, reminiscent of the horrors this portends’.

CASE (APPLYING PRINCIPLISM)
In Re A (Children) (Conjoined Twins: Surgical Separation) (2001) the
court had to consider the ethical implication of separating conjoined
twins (Mary and Jodie).
• Mary was the parasitic twin. She was dependent on Jodie for her blood
supply.
• Without Jodie, Mary would be unable to survive.
• It was likely that Jodie would be able to live a normal life if she was
separated from Mary.
• If Jodie was not separated from Mary, she would eventually die due to
Mary’s parasitic nature.

CASE (APPLYING PRINCIPLISM)
• How could principlism be applied?
• The conjoined twins were too young to be able to express a view.
The parents refused consent to separate the twins as their religious views
preferred to leave the decision in the hands of God. The court overruled their
autonomy and acted in the best interests of the twins.
• Nonmaleficence directs the medical professional not to harm others but the
separation would kill Mary (the parasitic twin). Mary would therefore be harmed.
• Beneficence was in direct conflict with the issues, as there is a positive
obligation to do ‘good’ but this was difficult to achieve as Mary’s death was the
inevitable outcome of the separation surgery.
• The application of ‘best interests’ was the most appropriate way of resolving
the dilemma. It was in Jodie’s best interests to be separated, in order to allow
Jodie to have a chance at living a normal life. Separation was not in Mary’s
‘best interests’ but a balance was required and the court held in favour of
Jodie’s potential life.

CLASSICAL EXAMPLE
A 52-year-old man collapses in the street complaining of severe
acute pain in his right abdomen.
A surgeon happens to be passing and examines the man, suspecting
that he is on the brink of rupturing his appendix.
The surgeon decides the best course of action is to remove the
appendix in situ, using his trusty pen-knife.

CLASSICAL EXAMPLE -
DISCUSSIONFrom a beneficence perspective, a successful removal of the appendix in situ would certainly improve
the patient’s life. But from a non-maleficence perspective, let’s examine the potential harms to the
patient.
First of all, the environment is unlikely to be sterile (as is that manky pen-knife) and so the risk of
infection is extremely high.
Second, the surgeon has no other clinical staff available or surgical equipment meaning that the
chances of a successful operation are already lower than in normal circumstances.
Third, assuming that the surgeon has performed an appendectomy before, they have almost certainly
never done it at the roadside – and so their experience is decontextualized and therefore not wholly
appropriate.
Fourth, unless there isn’t a hospital around for miles this is an incredibly disproportionate
intervention.
Again this is a rather silly example but it is important to remember that before leaping to action, we
need to consider the implications and risks of intervening at all.

ANTI-THEORY
Include various strains or combinations of casuistry, narrative ethics, feminism, and
pragmatism
Anti-theorists embrace bottom-up (but not too far up) modalities of thought, such as
common law jurisprudence in which the factual particularities of the case take center
stage (Arras 1990).
Whereas theorists tend to emphasize the capacity of our ordinary moral experience
to be neatly ordered and systematized, the anti-theorists emphasize the cultural
embeddedness, particularities, and ineradicable untidiness of our moral lives (Elliott
1999).
Fullinwider argues that common sense morality and actual social practices, positive
laws, and institutions should form the basis of practical ethics and social criticism.
https://plato.stanford.edu/entries/theory-bioethics/#CasForAntTheBio

CASUISTRY
This method of moral decision-making is not unlike what is
normally referred to in the Western system of jurisprudence
as “case law,” which makes almost exclusive use of what
are considered to be “precedent-setting cases” from the
past in an effort to decide the present case.
Casuists insist that the best way in which to make decisions
on specific cases as they arise in the field of health care,
and which raise significant moral issues, is to use prior
cases that have come to be viewed as paradigmatic, if not
precedent setting, in order to serve as benchmarks for
analogical reasoning concerning the new case in question.

CASUISTRY
The abstract nature of such theories and principles is such that they fail to
adequately accommodate the particular details of the cases to which they
are applied, and second, there will always be some cases that serve to
confound them, either by failure of the theory or principle to be practically
applicable or by suggesting an action that is found to be morally
unsatisfying in some way.

STRONGLY PARTICULARIST
CASUISTRY
Led by Stephen Toulmin and Albert Jonsen (1998).
the greatest confidence in our moral judgments resides not at the level of theory,
where we endlessly disagree, but rather at the level of the case, where our intuitions
often converge without the benefit of theory.
More precisely, moral certitude (or our best approximation thereof) is to be found in
so-called paradigm cases, where our intuitions are most strongly reinforced.
Moral analysis of a given situation begins, then, with a scrupulous inventory of the
particular facts of the case—i.e., the who, what, where, how much, for how long,
etc.—on which our judgments so often eventually turn.
This nexus of particulars is then compared with the details operative in one or more
paradigm cases—i.e., clear-cut examples of right or wrong conduct.

EPISTEMOLOGICAL MORAL
PARTICULARISM•According to Dancy (2006, 2009) , theories wrongly assume that right- or wrong-making
features of various situations must remain constant from one case to another.
•For example, if a physician lies to a patient, and if we regard that lying as telling against
the morality of her action, we assume that lying will be a wrong-making element in any
and all future cases.
•Denying the moral valence of any particular element must remain
constant from one case to another. In other words, they would contend
that in some situations lying might be positively good, not merely a bad
to be outweighed by some other element of the situation, so a general
rule or principle against lying would inevitably be both overbroad and
insufficiently attentive to context.
•Justification in ethics will not depend upon bringing a set of facts under a
suitably interpreted general principle; rather, justification will be a matter
of all the discrete elements of a particular decision fitting together or
“adding up” holistically in the right way.

WHAT ARE THE PROBLEMS OF
‘ANTI-THEORY’?
Historically, developed in the context of highly deontological religious
ethical systems with strong rules against lying, taking innocent life, etc.,
casuistry's primary task has been to adjudicate between such rules or
principles in complicated cases where they conflict or their application is
unclear.
It is also extremely unlikely that casuistry could be developed into a
completely freestanding method without any connection to moral
principles or a larger ethical vision.
As an analogical method of thinking, casuistry attempts to extend the
judgments reached in so-called paradigm cases to new cases that present
somewhat different fact patterns.
Paradigm cases are defined here as those cases in which a given principle
applies most clearly, straightforwardly, and powerfully. To the extent that
we are at all able to approximate certainty in moral matters, it will be in
the context of a strong match between a principle and a paradigmatic set

‘ANTI-THEORY’?
The crucial point here is that analogical reasoning is not self-directed. If
we think of casuistry as an engine of moral justification, it is natural to ask
about the steering wheel that provides a sense of direction to our
analogical reasoning.
Generalizations or principles also provide us with the crucially important
understanding of what's morally relevant and why, which drives analogical
reasoning forward.
If someone asks us for a moral justification of our stand on a particular
issue, they are most likely going to be unsatisfied with such responses as:
“All the facts just seemed to me to add up in a way that yields this
conclusion,”
Instead, we will most likely want to hold out for some sort of inference or
argument that moves from some sort of moral generalization (e.g., “lying
is wrong”) to an all-things-considered judgment about this particular

‘ANTI-THEORY’?
“…will almost certainly turn out to have been
reflective of either popular societal or cultural
bias because of the conscious methodology
to refrain from the use of normative ethical
theories and ethical principles, both of which
carry with them standards of objectivity”
(Beauchamp and Childress, 2009)

PROFESSIONAL DUTIES &
PROFESSIONAL
RELATIONSHIPS OF HCPS

issues.
to treatment
news
settings
conception
8. Medical negligence Medical
clinical practice?

PERSONHOOD, MORAL AGENCY, &
RESPONSIBILITY
If professionalism indicates a set of ‘duties’ and ‘rights’; then there
are responsibilities
But for whom/what are we responsible?

YOUR THOUGHTS/INTUITIONS…
What/who is a “person”?

PERSONS AND PERSONHOOD
“Personhood”: philosophical concept that attempts to
capture the most basic properties of who persons are
“Person”: one who has these most basic properties
Ethical implications: many think persons ought to be
treated better than nonpersons; many think persons
have rights and nonpersons do not
“Human being” is a biological term that refers to homo sapiens…

WHAT IS A PERSON?
Some proposals:
“Persons” are individuals who have a sense of self, the ability to
reason, possess—or are in the process of developing—a set of stable
values and beliefs
“Persons” are individuals who are “the subject of a life,” an on-going
narrative

PROPOSED CRITERIA FOR PERSONHOOD (FROM T.I.
WHITE, 1991)
alive
aware
+ and - sensations
self-consciousness
controls own behaviour
recognizes other people and
treats them appropriately
capable of analytical,
conceptual thought
able to learn
can solve complicated
problems with analytical
thought
capacity for communication
that suggests thought

WHO COUNTS AS A “PERSON”?
human embryos? fetuses? infants?
non-human animals? (some? all?)
humans in PVS? coma?
humans with severe cognitive disabilities? advanced dementia?
“extraterrestrials”?
other?

“MORAL AGENT”
“Anyone responsible for the outcome of her or his actions in a specific
situation”
“Agency requires that a person be able to understand the situation and be
free to act voluntarily on her or his best judgment”
Agency “implies that the person intends for something to happen as a result
of that action” (Ruth Purtilo)
Human beings have free will, that is, distinctive causal powers or a special
metaphysical status, that separate them from everything else in the
universe;
Human beings can act on the basis of reason(s);
Human beings have a certain set of moral or proto-moral feelings.

MORAL AGENCY
Kant’s moral theory is that a rational agent chooses to act in the light of
principles – that is, we deliberate among reasons. Therefore standards of
rationality apply to us, and when we fail to act rationally this is, simply and
crudely, a Bad Thing.
According to the standard conception of agency, a being has the capacity to
act intentionally just in case it has the right functional organization: just in
case the instantiation of certain mental states and events (such as desires,
beliefs, and intentions) would cause the right events (such as certain
movements) in the right way.
Frankfurt (1971) argued that the difference between persons and other
agents consists in the structure of their will. Only persons reflect on and
care about their motivations. This reflective evaluation of our motives
usually results in the formation of second-order desires: desires that are
directed at first-order desires (which are directed at goals and actions).

“MORAL PATIENT”
“Moral patients” are worthy of ethical regard because they have
interests (i.e., they can be harmed or benefited) but cannot be held
morally accountable for their actions (e.g., infants, human beings
with severe mental disabilities, or animals)
(Tom Regan)

TO WHOM ARE WE RESPONSIBLE IN
CLINICAL CARE?
The six main domains of the SaudiMED 2020 framework

RESPONSIBILITIES OF PHYSICIANS
& PATIENTS
Patient-Physician Relationships
Patient Rights
Patient Responsibilities
Terminating a Patient-Physician Relationship
Quality
Physician Exercise of Conscience

PATIENT-PHYSICIAN
RELATIONSHIPSThe relationship between a patient and a physician is based on trust,
which gives rise to physicians’ ethical responsibility to place patients’
welfare above the physician’s own self-interest or obligations to
others, to use sound medical judgment on patients’ behalf, and to
advocate for their patients’ welfare.
A patient-physician relationship exists when a physician serves a
patient’s medical needs. Generally, the relationship is entered into by
mutual consent between physician and patient (or surrogate).
What are the exceptions for this ‘consent’?
Emergency care
Treating other physician’s patient
Other?

CAN A PHYSICIAN DECLINE
TREATING A PATIENT?
(a) The patient requests care that is:
 beyond the physician’s competence or scope of practice;
 is known to be scientifically invalid,
 has no medical indication, or cannot reasonably be expected
to achieve the intended clinical benefit;
 or is incompatible with the physician’s deeply held personal,
religious, or moral beliefs in keeping with ethics guidance on
exercise of conscience.
(b) The physician lacks the resources needed to
provide safe, competent, respectful care for the
individual.
 Physicians may not decline to accept a patient for reasons that

CAN A PHYSICIAN DECLINE
TREATING A PATIENT?
(c) Meeting the medical needs of the prospective
patient could seriously compromise the physician’s
ability to provide the care needed by his or her other
patients.
(d) The individual is abusive or threatens the
physician, staff, or other patients, unless the physician
is legally required to provide emergency medical care.

PATIENT RIGHTS (1)
These include the right:
(a) To courtesy, respect, dignity, and timely, responsive attention to his or her needs.
(b) To receive information from their physicians and to have opportunity to discuss the
benefits, risks, and costs of appropriate treatment alternatives, including the risks, benefits
and costs of forgoing treatment. Patients should be able to expect that their physicians will
provide guidance about what they consider the optimal course of action for the patient based
on the physician’s objective professional judgment.
(c) To ask questions about their health status or recommended treatment when they do not
fully understand what has been described and to have their questions answered.
(d) To make decisions about the care the physician recommends and to have those decisions
respected. A patient who has decision-making capacity may accept or refuse any
recommended medical intervention.

PATIENT RIGHTS (2)
(e) To have the physician and other staff respect the patient’s privacy and confidentiality.
(f) To obtain copies or summaries of their medical records.
(g) To obtain a second opinion.
(h) To be advised of any conflicts of interest their physician may have in respect to their care.
(i) To continuity of care.

PATIENT AUTONOMY AND
CONSENT TO TREATMENT

HISTORICAL (US) CONTEXT
Justice Benjamin Cardozo in Schloendorff v. Society of New York
Hospitals (1914), when he wrote, “Every human being of adult
years and sound mind has a right to determine what
shall be done with his own body.”
F v West Berkshire Health Authority (1990) Justice Neill J:
‘treatment or surgery which would otherwise be
unlawful as a trespass is made lawful by the consent
of the patient’.
In Buck v. Bell (1927), Justice Oliver Wendell Holmes
wrote that the involuntary sterilization of “mental
defectives,” then a widespread practice in the U.S., was
justified, stating, “Three generations of imbeciles are

ELEMENTS OF CONSENT
Capacity/Competence
• Understanding the given
information
• Appreciation of risk associated with
decisions
• Memorization: Ability to retain
study-related info after consent
Disclosure
• Relevant information
• Appropriate format
Voluntariness
• Free from coercion
• No undue influence
Documentation
• Witnessed (verbal)
• Signed (written)
C o n s e n t

COMPONENTS OF IC:
1. "Disclosure" refers to the provision of relevant
information by the clinician and its
comprehension by the patient. This refers to the
process during which physicians provide
information about the proposed research to the
participant
2. "Capacity" refers to the patient's ability to
understand the relevant information, to
appreciate those consequences of his or her
decision that might reasonably be foreseen, and
to remember these information for adequate
period of time.
3. "Voluntariness" refers to the patient's right to

Article 19
No medical intervention may be performed except with the consent of the patient,
his representative or guardian if the patient is legally incompetent.
As an exception, a healthcare professional must in cases of accidents,
emergencies or critical cases requiring immediate or urgent medical intervention to
save the patient's life or an organ thereof or to avert severe damage that might
result from delay, where the timely consent of the patient, his representative or
guardian is unattainable – intervene without waiting for such consent.
Under no circumstances may the life of a terminally ill patient be terminated even
if so requested by the patient or his family.

Case scenario 1: Autonomy as the basis of informed consent
An 80-year-old, fully conscious, and competent man with advanced
incurable cancer needed palliative chemotherapy. The family objected
when the doctor wanted to obtain informed consent from the patient
because that would involve disclosing the diagnosis, which would
make the patient very sad and depressed. The family wanted to make
the decision without informing the patient.
What should the doctor do? Provide your moral reasoning.

DISCUSSION OF CASE 1: AUTONOMY AS
THE BASIS OF INFORMED CONSENT
The doctor should respect the patient's autonomy.
He should first ask the patient whether he personally wanted to
receive information about his condition in order to make decisions on
his treatment, or whether he would prefer that the information be
disclosed to his family, and the family authorized to make decisions on
his behalf.
If he insists on making decisions for himself, he must receive full
disclosure and exercise his autonomous right to informed consent.
If he chooses to leave everything to the family, the doctor can deal
with the family accordingly.

CASE SCENARIO 2: SCOPE AND
LIMITATIONS OF CONSENT
A 30-year-old woman presented with classical signs of acute
appendicitis. She consented to an operation to open the abdomen and
remove the inflamed appendix. The surgeon found a previously
undiagnosed ovarian cyst and decided to remove it. The removal was
a simple and safe procedure that would not have increased the
duration of the operation. The head nurse refused because the patient
had not given consent.
What should the surgeon do? Provide your moral reasoning.

DISCUSSION CASE 2: SCOPE AND LIMITATIONS OF
CONSENT
 The doctor should not go ahead with the removal of the cyst because
that would be outside the scope of the informed consent obtained.
In this case, there is no emergency life-saving need to operate
without consent.

Case scenario 3: Consent and protection of the patient
An 80-year-old diabetic man, whose son had died last year from a
transfusion of mismatched blood, was admitted to the same hospital
for observation after falling at home. He insisted that no procedure be
carried out without written approval by his physician son, whom he
wanted to sit by his bedside all the time. Nurses were inconvenienced
by having to get written permission for routine monitoring of vital
signs and insulin injections. The nurses refused to comply with his
wishes and he refused to cooperate, leading to a standoff.
What should the doctor in charge do? Provide your moral reasoning.

DISCUSSION CASE 3: CONSENT AND
PROTECTION OF THE PATIENT
The doctors should respect the patient's autonomy and
accommodate his needs as much as possible.
If, however, they find that complying with the patient's
wishes is not possible without disrupting the work of the
ward, they can follow the procedures for refusal of
treatment by the patient, which may later lead to discharge
to another institution with the capacity to handle the
patient's needs.

Case scenario 4: Consent and the protection of the physician
A young neurosurgeon planned to operate on a patient with lumbar
spinal injury that had a 5 - 10% chance of success. He felt uncertain
about taking informed consent. If he informed the patient that the
operation could go wrong and result in paraplegia, there was a 90%
chance the patient would refuse the operation. If the operation was
not carried out, there was a 95% chance of further deterioration,
leading to paraplegia after a few months.
What should the neurosurgeon do? Provide your moral reasoning.

DISCUSSION CASE 4: CONSENT AND THE
PROTECTION OF THE PHYSICIAN
The patient has a right to full disclosure even if that will result in refusal of
treatment. Fear of refusal of necessary treatment is not a justification for
violating the patient's autonomy.

Case scenario 5: The process of informed consent
A complex brain operation had a 3-page risk disclosure sheet. The surgeon
determined that his poorly educated patient could not understand the information
even with the best of translations, and might even refuse the lifesaving operation.
The operation was necessary to release a hematoma and a fractured bone fragment
putting pressure on the cerebrum, which would soon lead to loss of consciousness
due to increased intracranial pressure. He gave the patient simple information that
the operation would help him recover from the effects of trauma and that it had
some risks, which he did not mention.
What should the surgeon do? Provide your moral reasoning.

DISCUSSION CASE 5: THE PROCESS OF
INFORMED CONSENT
The patient is entitled to full disclosure, but a summary will suffice if it
excludes technical details but covers the major benefits, and especially the
risks, of the operation in simple language. This is justified because it maintains
respect for the right of the patient to know.

Case scenario 6: Capacity/competence to consent
A university professor admitted for stroke refused life-saving treatment
even after a thorough explanation by his son, who was a
neurosurgeon. While in the hospital, he seemed to forget essential
information about his illness, forgot his age and his wife's name, and
was confused about the day of the week.
However, he was in continuous telephone contact with his laboratory
at the university, guiding the young researchers. What should the
doctor do? Provide your moral reasoning.

DISCUSSION CASE 6: CAPACITY AND
COMPETENCE TO CONSENT
A formal testing of competence by a physician or psychologist is necessary in
this case. If the professor is found competent, his refusal of treatment should
be upheld.

Case scenario 7: Proxy consent/substitute decision maker
A 30-year-old victim of a road traffic accident was in a deep coma,
with some signs of brain stem function, and was put on life support in
the ICU. He had told his wife before the accident that he would like to
be left to die in dignity rather than live with the aid of machines. He
had also authorized his wife, in writing, to make decisions about his
treatment if he fell unconscious. Led by his father, his family refused
this and insisted that life support continue until recovery.

DISCUSSION CASE 7: PROXY CONSENT
AND SUBSTITUTE DECISION MAKER
The decision of the wife based on the desires of the patient is
respected.
However, it is possible for the father to override her based on
considerations of the Sharia.

Case scenario 8: Prospective consent/advance directives
A 40-year-old victim of multiple sclerosis, aware of the final stages of
his illness, signed an advance directive authorizing doctors not to
initiate life support if he stopped breathing on his own. He developed
acute pneumonia a short while after writing the directive, and
experienced severe respiratory distress. The doctors were not sure
what to do. Members of the family were divided in their views.
What should the doctors do? Provide your moral reasoning.

DISCUSSION CASE 8: PROSPECTIVE
CONSENT AND ADVANCE DIRECTIVES
The advance directive was related to respiratory failure due to multiple
sclerosis and cannot be applied to respiratory failure due to acute
pneumonia.

Case scenario 9: Consent for children
A 14-year-old boy with bone cancer confined to the tibia refused
amputation that would prevent spread of the cancer to other parts of
the body. He understood the adverse consequences of his decision.
His father and mother opposed his decision and authorized the
surgeons to carry out the amputation.

DISCUSSION CASE 9: CONSENT FOR CHILDREN
A 14-year-old cannot make a decision to refuse treatment, so in this case the
parents‟ decision is the one upheld.

Case scenario 10: Consent for the mentally impaired
A 14-year-old mentally impaired girl used to wander from her home,
and her parents feared that she might be raped and become
pregnant. They took her to the hospital and asked the doctors to
sterilize her. The doctors talked to her and she opposed the operation
vehemently.

DISCUSSION CASE 10: CONSENT FOR
THE MENTALLY IMPAIRED
The 14-year-old is not competent to decide. In view of the irreversible
nature of the operation, advice of a court of law should be sought.

Case scenario 11: Consent for the unconscious
A 60-year-old diabetic was admitted to the hospital in a coma due to diabetic
keto-acidosis and a gangrenous foot. The doctors decided to amputate the
foot as soon as the general condition had stabilized enough to withstand
anesthesia. The patient's sons and daughters refused the operation, even
after explanations that the gangrene would spread and result in fatal
septicemia.
They reasoned that it was better for him to die and be buried with all parts
of his body than to live with an amputated limb.
What should the doctor do? Provide your moral reasoning

Case 11: Consent for the unconscious
The decision of the family is sustained in this case because they are the valid substitute
decision makers.

TRUTH TELLING &
BREAKING BAD NEWS

WHAT IS TRUTH-TELLING?
truth telling involves the provision of information not simply to
enable patients to make informed choices about health care and
other aspects of their lives but also to inform them about their
situation.
Patients may have an interest in medical information regardless of
whether that information is required to make a decision about
medical treatment.
Truth telling requires accuracy and honesty, i.e. to create a “true
impression” in the mind of the patient.
Truth telling requires that information be presented in such a way
that it can be understood and applied.

WHAT CONSTITUTES BAD
NEWS?
 Unfavourable diagnosis
 Irreversible, un-treatable, or non-stoppable
diseases (or side effects, or complications)
 Disease recurrence
 Spread of disease
 Revealing positive results of genetic tests
 Stigmatization
 Late (to treat) stage diseases
 End of life decisions (DNR, resuscitation)
 Death

WHY SHOULD WE TELL OUR
PATIENTS THE TRUTH ABOUT
THEIR CONDITIONS?
Ethical
autonomy
Beneficence
Non-
maleficence
Professional
Communicator
Advocate
Duty to care
Human
rights
Right to know
Right to decide
Legal
Negligence
EOL decisions
Advance
directives

WHY DO WE NEED TRUTH-
TELLING?
Ethically:
1. Autonomy: disclosure indicates information sharing; core components of
informed consent: disclosure of information; comprehension;
voluntariness; competency; and an agreement with the proposed
procedure or intervention
2. Beneficence: without the ’truth’, such informed decisions on what the
benefit of the intervention is can never be reached. This means that the
state of being ‘uninformed’ (or mal-informed) might lead people to miss
a true benefit, or have illusions about a false one.
3. Non-maleficence: who determines harm(ful) aspects?
4. Trust: feeling of deception or being misled may erode trust in the system

ON THE OTHER SIDE
patients ought not to be needlessly upset with worrisome news
about their medical condition.
Thomas Percival stressed in his influential book Medical Ethics
(1803) suggested that truth-telling yields to the important obligation
to shield information that could be harmful to patients.

WHY CLINICIANS DON’T TELL?
1. Uncertainty about many aspects of the conditions, especially those
related to terminal illnesses
2. Knowledge brings forth the responsibility to act upon it
3. Not all truth are created equal (information is irrelevant to the care and
general welfare)
4. Lack of proper communication skills
5. Fear (worry) about the patient’s reaction to the information disclosed
6. A belief that it is ‘in the patient’s best interest’ (who decides?)
7. Lack of adequate time to explain to the patient adequately
8. Language barrier
9. Justifiable (soft) paternalism

WHAT IS ‘ADEQUATE DISCLOSURE’?
Professional standard: Would a typical physician act differently from Dr. A?
’ the ‘reasonable person’ standard: “Would a hypothetical reasonable person
want this information revealed to her at this, time?” and
the ‘subjective’ standard: some individuals would simply want to know this
genetic information. No explanation or justification or interpretation is required.
They would just want to know at this time. It obligates Dr. A only if he has
knowledge about a unique belief; in the absence of such knowledge the physician
has no obligation to inform his patient

GRADES OF TRUTH?
Wholetruth
How
much
info?
Partialtruth
Modified
version of
truth
Hiding
Until
when?
Deception
Same as
hiding?

If you hide truth or withhold
information to avoid
discomfort to the patient
Lying to
the patient
Obstructing
autonomy
Ethical & legal obligation on the
physician to provide patients with as
much information
about their illness as they desire

However, if truth is disclosed without
concern for patient’s sensitivity
Patient Discomfort

Truth may be disclosed
without concern for
patient’s sensitivity
Discomfort
Avoid discomfort of the
patient and withhold
information
Lie

IN DEFENSE OF LYING TO OUR
PATIENTS?Nyberg in his book, The Varnished Truth, challenges the truth
telling "orthodoxy". Truth-telling is insufficiently nuanced and
fail to take into account the circumstances that seem to warrant
deception in everyday life. Truth telling is "morally overrated."
Deception is part of the civility (the "good manners") of society
and may be as meaningful and important as disclosure. Truth
may be "unsuitable" in some circumstances: friends, for
example, do not always want the truth but rather, "I rely upon
you to look after me."
A friend tells you the truth "when it is in your interest to hear it"
and will tell it compassionately. The atmosphere of trust rests
in Nyberg's eyes on a "delicately balanced mixture of truth
telling and deceiving."
Other virtues, such as preventing pain, can be more important
than honesty. We trust that our friends will know us well
enough to know when they should best be silent.

EXTENT OF THE ‘DUTY TO TELL’?
Tell
whom?
Patient
Beyond?
Close
family
Consider these conditions:
X- recessive diseases
STIs (spouse?)
Occupational hazard (epileptic
school-bus driver)

WHAT DOES THE LAW SAYS?
Article 18
A healthcare professional shall, after explaining the treatment or
surgery involved and outcome thereof, alert the patient or his family
to the necessity of following the instructions provided and warn
them of the consequences of failing to follow said instructions.
A physician may, in cases of incurable or life threatening diseases,
decide, at his own discretion, whether it is appropriate to inform the
patient or his family of the nature of his disease, unless prohibited
to do so by the patient or if the patient designates a persons to be
exclusively informed.

BREAKING BAD NEWS
IS DIFFICULT

5 STAGES OF
GRIEF AND
LOSS
–KUBLER ROSS
MODEL
Denial
Anger
Depressio
n
Bargainin
g
Acceptanc
e

5 STAGES OF GRIEF AND LOSS
–KUBLER ROSS MODEL
DENIAL Person denies the facts when he receives bad
news
ANGER Becomes angry, irritated, jealous and resentful
DEPRESSION Feelings of helplessness develop
May take refuge in alcohol and drugs
BARGAINING Tries to get away from the truth in different ways
ACCEPTANCE Accepts the fact that there is no more hope

DO YOU REMEMBER THE REACTION
OF THE COMPANIONS TO THE
DEATH OF THE PROPHET (PBUH)?

HOW TO BREAK BAD NEWS?
SIX STEPS OF SPIKES

SIX STEPS OF SPIKES
S SETTING UP the interview
P Assessing the patient’s PERCEPTIONS
I Obtaining patient’s INVITATION
K Giving KNOWLEDGE to the patient
E Addressing patient’s EMOTIONS with empathy
S STRATEGY and SUMMARY

STEP 1: SETTING UP THE
INTERVIEWPrivacy: a private location, such as an interview room
Involve family members for support
Sit down
Do not interrupt the patient when (s)he is talking
Manage time constraints and interruptions

STEP 2: ASSESSING
PATIENT’S PERCEPTION
“BEFORE YOU TELL, ASK”
Find out what patient knows about her/his illness
Will help you understand how much patient knows
about the seriousness of her/his disease

STEP 3: OBTAINING PATIENT’S
INVITATION
Although most patients want to know all the details
about their medical situation, you can't assume that
this is the case. Obtaining overt permission respects
the patient's right to know (or not to know)

STEP 4: GIVING
KNOWLEDGE
Use the same language your patient uses
Don’t use medical jargon
Give information in small chunks
Clarify patient’s understanding

STEP 5: ADDRESSING
PATIENT’S EMOTIONS WITH
EMPATHY
Acknowledge patients emotions
Tell her/him that these emotions are normal

STEP 6: STRATEGY AND
SUMMARY
Summarize the information
Give patient an opportunity to ask questions
If you don't have time to answer ell your patient that
this issue can be discussed in detail during next
interview

Are
Confidentiality
& Privacy
similar?

Confidentiality
Personal information shared with a doctor that cannot
be divulged to anyone without the consent of the
patient
Privacy
Freedom of the patient not to give information to
the physician

Confidentiality
(Informational) is the right
of an individual to have
personal, identifiable
medical information kept
out of reach of others.
Privacy (Physical):
a right or expectation to not be
interfered with
be free from surveillance
a moral right to be left alone.

Privacy
Informational
privacy
confidentiality
anonymity
secrecy
data security
Associational
privacy
intimate sharing of
death, illness and
recovery
Physical privacy
modesty
bodily integrity
Proprietary
privacy
control over
personal
identifiers,
genetic data
Biospecimens
Decisional
privacy
autonomy
choice in medical
decision-making

It is the assurance to the patient that the information
(s)he shares with doctors would not be passed on to
anyone without their permission
. . . And such information can be shared only after
authorization is provided, and then only with
authorized individuals.
What is
confidentiality?

CONFIDENTIALITY
“the boundaries surrounding shared secrets and to the
process of guarding these boundaries”
restricting information to persons belonging to a set
of specifically authorized recipients;
achieved through professional silence and secure data
management
https://plato.stanford.edu/entries/privacy-
medicine/#InfPri

WHAT INFORMATION SHOULD BE
KEPT SECRET?
Any medical information that comes to the knowledge
of the practitioners as a result of their work, whether
directly obtained from the patient, or otherwise

WHAT INFORMATION
SHOULD BE KEPT
SECRET?•Past, present or future physical/mental
condition
•Diagnosis or treatment
•Photograph, video, audiotape
•Patient’s doctor’s name(s)
•Clinics patient attended
•The past, present, or future payment for
the healthcare to the individual

Why
Confidentiality
is important?

WHY CONFIDENTIALITY
IS IMPORTANT?
If patient knows his/her
information will be kept secret
(S)he will render important
information to the doctor
Good diagnosis
Better treatment

ETHICAL ASPECTS OF
CONFIDENTIALITY
Utility/Beneficence: of person and public health
Dignity/autonomy: sheltering those seeking morally controversial medical
care from outside criticism and interference with decisions
Virtue: its own set of grounds for informational privacy in health care, e.g.
the special vulnerability of mental health patients and the stigma attached
to their problems turns confidentiality into a particular brand of excellence
for mental health care practitioners
Justice: fair relations with government and businesses. “knowledge is
power”.
Ideally, fair information practices require that personal data collected about
individuals be limited, accurate, secure and disclosed to third-parties only
with consent.

WHAT IS CONFIDENTIAL?
All identifiable patient information, whether written, computerised,
visually or audio recorded or simply held in the memory of health
professionals, is subject to the duty of confidentiality.
It covers:
 the individual’s past, present or future physical or mental health or condition,
 any clinical information about an individual’s diagnosis or treatment;
 a picture, photograph, video, audiotape or other images of the patient;
 who the patient’s doctor is and what clinics patients attend and when;
 anything else that may be used to identify patients directly or indirectly
 the past, present, or future payment for the provision of health care to the
individual,

How
Confidentiality
Should be
Maintained?

SHARING OF
INFORMATION•Do not discuss patient’s medical information with unauthorized family members
•Limit sharing of information with other staff, unless for consultations and second opinion
•Do not disclose patient’s information without his/her consent
Give patients the right to opt-in and opt-out of electronic systems
o Give patients the right to segment sensitive information
o Give patients control over who can access their electronic health records

SHARING OF
INFORMATION• Health information disclosed for one purpose may not be used for another purpose before
informed consent has been obtained
• Require audit trails of every disclosure of patient information
• Require that patients be notified promptly of suspected or actual privacy breaches
• Ensure that consumers can not be compelled to share health information to obtain
employment, insurance, credit, or admission to schools, unless required by statute
• Deny employers access to employees’ medical records before informed consent has been
obtained

PATIENT’S MANUAL
RECORDS
Hold in secure place under lock and key
Return to the filing system as soon as possible after
use
Use MR tracking systems (barcodes), when available

ELECTRONIC RECORDS
Log out computer system when work
is finished
Do not leave a terminal unattended
while logged in
Do not share passwords with others
Change passwords at regular intervals
Always clear the screen of previous
patient’s information before seeing
another

EMAILS & FAX
Whenever possible, clinical details should be separated
from demographic data;
All data transmitted by email should be password-
protected

When
Confidentiality
can be
breached?

WHEN CONFIDENTIALITY
CAN BE BREACHED?
Permitted by the patient or substitute decision maker
If required by judiciary
Consultation or second opinion
Public health interest/threats (birth, death, notifiable
diseases)
Individual’s threats to prevent crimes
If needed by the doctor to defend him/herself before
judges or disciplinary committee
If the patient consciously and truly admits committing a
crime on which another person was accused/punished

CAN BE BREACHED?
The duty to warn (The Tarasoff Case)
In 1969, Prosenjit Poddar, a student at the University of California, fell in love with Tatiana Tarasoff,
another student of the university. After a short relationship with her, he fell into depression and
consulted a psychotherapist because he had fantasies of killing her. He even purchased a gun. The
psychotherapist counselled a colleague and informed the campus police.
After interviewing Poddar, the campus police decided there was no actual danger. Neither Tarasoff nor
her parents received any warning. Two months later, Poddar stabbed Tarasoff to death.
The parents of Tarasoff sued the campus police, the health service, and the Regents of the University of
California, because neither they nor their daughter were informed of the danger. The trial court
dismissed the case because it lacked a cause of action. Before Tarasoff, there was no duty for
physicians to inform others

CAN BE BREACHED?
The duty to warn (The Tarasoff Case)
in appeal (aka Tarasoff II), the court ruled:
“When a therapist determines, or pursuant to the standards of his
profession should determine, that his patient presents a serious
danger of violence to another, he incurs an obligation to use
reasonable care to protect the intended victim against such danger.
The discharge of this duty may require the therapist to take one or
more of various steps, depending upon the nature of the case. Thus,
it may call for him to warn the intended victim or others likely to
apprise the victim of the danger, to notify the police, or to take
whatever other steps are reasonably necessary under the
circumstances”
(Supreme Court of California; Tarasoff v. the Regents of the University of California; 551 P.2d 334 (Cal.
1976); see also Bruckner and Firestone, 2000).

Fiqhi Aspects
"ِ‫ت‬‫َا‬‫ن‬‫ا‬َ‫م‬َ‫أ‬ ‫وا‬ُ‫ن‬‫و‬ُ‫خ‬َ‫ت‬ َ‫و‬ َ‫ل‬‫و‬ُ‫س‬َّ‫الر‬ َ‫و‬ َ َّ‫اَّلل‬ ‫وا‬ُ‫ن‬‫و‬ُ‫خ‬َ‫ت‬ َ‫َل‬ ‫وا‬ُ‫ن‬َ‫م‬‫آ‬ َ‫ِين‬‫ذ‬َّ‫ال‬ ‫ا‬َ‫ه‬ُّ‫ي‬َ‫أ‬ ‫ا‬َ‫ي‬َ‫ون‬ُ‫م‬َ‫ل‬ْ‫ع‬َ‫ت‬ ْ‫م‬ُ‫ت‬‫ن‬َ‫أ‬ َ‫و‬ ْ‫م‬ُ‫ك‬(27)”
‫قال‬ ،‫وسلم‬ ‫عليه‬ ‫هللا‬ ‫صلى‬ ‫بي‬َّ‫ن‬‫ال‬ ‫عن‬ ‫عنه‬ ‫هللا‬ ‫رضي‬ ‫جابر‬ ‫عن‬:((‫أمانة‬‫فهي‬ ‫التفت‬‫ثم‬ ‫بالحديث‬‫الرجل‬‫ث‬ َّ‫حد‬ ‫إذا‬))
‫اَللباني‬ ‫وحسنه‬ ‫والترمذي‬ ‫داود‬ ‫أبو‬ ‫رواه‬

When 4 conditions are fulfilled!
•What was disclosed was a secret
•The actual disclosure regardless the way of disclosure
•To be the person trusted to keep the secret
•The intention to disclose e.g. not out of negligence or
forgetting, (e.g. leaving the records open or accidently
dropping a medical information sheet)
WHEN DISCLOSURE OF MEDICAL
SECRET CONSIDERED A CRIME?

PHYSICAL PRIVACY
Patients have expectations that they will not be needlessly touched, crowded,
gawked at or imaged.
Many individuals understand bodily modesty as a moral virtue, and act accordingly.
Under some religious traditions, such as those of Muslims, Orthodox Jews and the
Amish, bodily modesty is a requirement of faith. Being asked to disrobe, even for a
good reason, may impose the cost of going against principle or desire (Kato and
Mann 1996).

MEASURES TO PROTECT PRIVACY
(KSA GUIDELINES)
1. Make sure examination takes place in isolation from other
patients, unauthorized family members, and/or staff
2. Provide gender-sensitive waiting and examination rooms
3. Provide proper clothing for the admitted patients
4. Make sure patients are well covered when transferred from
place to another in the hospital
5. Make sure your patient body is exposed ONLY as much as
needed by the examination or investigation
6. Patients should have separate lifts and be given priority

MEASURES TO PROTECT PRIVACY (KSA GUIDELINES)
1. Make sure there is another person (nurse) of the same sex as the
patient present all the time of the examination
2. Always take permission from the patient for before examination
3. Insure privacy when taking information from patients
4. Avoid keeping patients for periods more than required by the
procedure.
5. It’s prohibited to examine the patient in the corridors or in the
waiting area.
6. During examination, no foreign person unrelated to the patient
allowed
7. Give patients enough time to expose the part with pain
8. Only relevant personnel are allowed to enter the examination room

ETHICAL ISSUES IN
REPRODUCTIVE HEALTH

OUTLINE
Basic concepts in reproductive health
Assisted Reproduction
Contraception
Reproductive cloning
Abortion
Gender selection
Gender change

REPRODUCTIVE HEALTH
“a state of complete physical, mental and social
well-being and not merely the absence of disease
or infirmity, in all matters relating to the
reproductive system and to its functions and
processes.
Reproductive health therefore implies that people
are able to have … the capacity to reproduce and
the freedom to decide if, when and how often to
do so. Implicit in this last condition are the rights
of men and women to be informed and to have the
right of access to appropriate healthcare services
that will … provide couples with the best chance of
having a healthy infant.”

REPRODUCTIVE TECHNOLOGY
This is the use of medical or surgical management to
enable fertilization and conception to take place.
It may take the form of introducing the male sperm
into the female reproductive tract, resulting in
fertilization in the fallopian tubes (in vivo
insemination).
It may also involve fertilizing the female ovum with
male sperms outside the body, and introducing the
resulting gamete to grow in the uterine cavity (in vitro
fertilization, IVF).

REPRODUCTIVE TECHNOLOGY
Since the advent of in vitro fertilization (IVF) in 1978, an
estimated 5 million babies have been born worldwide as an
outcome
the 2010 Noble prize in medicine being awarded to Dr
Robert Edwards
Over 1% of all births in the US are of babies conceived
through reproductive technology and 6% in the EU (2010)
What are they characterized by?
Costly
Carries some uncertainty
Open ‘sources’ (donors) of gametes

ETHICAL AND LEGAL ASPECTS IN
ASSISTED REPRODUCTION (1)
justice and equal access, ? public funding
new possibilities for creating families
new types of kinship (?homosexual couples)
gestational surrogacy created for the first time in human history a
distinction between a genetic and a birth mother
the legality of surrogacy agreements and the associated monetary
compensation
Anonymous gamete donation: a ‘donated generation’ of individuals
deprived of access to the identity of one of their progenitors.

ETHICAL AND LEGAL ASPECTS IN
ASSISTED REPRODUCTION (2)
Prenatal testing unprecedented degree of control over the health
(and even the identity) of their future children and moral distress
surrounding the decision to terminate a pregnancy
Elective egg freezing allows women to possibly expand their
reproductive capacity into their 40s and 50s
mitochondrial transfer genetic mothers to healthy babies that would
not inherit their mitochondrial disease, creating what is technically a
baby with three genetic parents

AS ISLAMIC BIOETHICAL
APPROACHIn vivo insemination is ethically acceptable if it is done by consent of both husband
and wife and the sperm is inserted into a legally married wife.
IVF requires consent by a husband and wife who are legally married at the time of
the fertilization.
Sperm and ovum donation are not allowed because of violation of the principle of
preserving lineage, hifdh alnasab ( ‫حفظ‬‫ست‬ُ‫ن‬‫ا‬.(
Sperm banks are not allowed because this would mix up the lineage.
It is not allowed to use sperm or ova from a dead spouse because that would lead
to an out-of-wedlock birth
Preserved ova or sperm cannot be used after dissolution of the marriage by divorce.
Excess embryos from IVF procedures have human life and cannot be destroyed.
Legal experts have permitted their use in scientific research if it can be proven to
lead to better medical care.

ETHICAL CHOICES ABOUT EXCESS
EMBRYOS
Frozen;
Disposed of;
Donated to other couples;
Donated for research purposes;
Used for training embryologists; or
Used to improve assisted reproduction techniques

FORBIDDEN PROCEDURES
developing embryos for purposes other than use in
assisted reproduction;
mixing gametes of different couples to confuse
biological parentage,
commercial trading in ova, sperms, and gametes,
use of gametes from cadavers.

INFERTILITY
Infertility is the inability to reproduce naturally, and is
a problem that concerns both males and females.
The causes may be with the male, the female, or both.
Infertility is defined as failure of conception in a
healthy couple with regular sexual intercourse over a
specific period, usually of one year.
It is a problem that requires a diagnosis and treatment
because of the associated psychological stress. BUT
Is infertility a disease?

IS INFERTILITY A DISEASE?
The World Health Organization (WHO) suggests that infertility is ‘a disease of the
reproductive system defined by the failure to achieve a clinical pregnancy after 12
months or more of regular unprotected sexual intercourse’
Why this question matters?
 if perceived as a disease, public funding for its treatment is construed as justified
and what remains to be determined is its prioritization
 if not, its funding may be unjustified from the outset.
Counterarguments:
does not lead to mortality or morbidity,
does not entail any physical pain, and does not directly affect the functioning of
other physical systems in the body
the diagnosis of infertility is uncertain and variable between countries
a diagnosis of infertility is often given when the medical cause of the inability to
conceive is unknown

IS INFERTILITY A DISEASE?
infertility is a dysfunction of a bodily system that cannot fulfill its
natural function
infertility can be treated – or alleviated – through medical
intervention.
if an infertility treatment is determined by achieving a live birth, then
IVF can indeed successfully treat infertility in many cases

REPRODUCTION: RIGHT? DUTY?
LUXURY?
The 1948 Universal Declaration of Human Rights :
‘Men and women of full age, without any limitation due to race,
nationality or religion, have the right to marry and to found a
family’ (article 16).
The ‘right to found a family’ a negative right – for example, the right not
to be forcibly sterilized or perhaps pay out of pocket for assisted
reproduction without state interference or limitations , or
a positive right – a right to access services and resources required in
order to procreate (e.g. through public funding )
Like other positive rights, such as health and education, the
implementation of such a right is context-specific – what resources are
available and how a given society chooses to prioritize the needs of its
citizens based on its shared social values.

AS ISLAMIC BIOETHICAL APPROACH
TO CONTRACEPTION
Marriage and reproduction are obligatory (wajib) to ensure continuation of
the community.
Contraception as a compulsory community policy is not permitted.
Contraception is mubaah or mustahabb for an individual couple who have
the choice to reproduce or not.
According to the Prophet, contraception by coitus interruptus is
permissible.
Decisions on contraception must be based by mutual consent between the
husband and wife.
If the life and health of the wife will be endangered by pregnancy, the
husband’s consent to contraception is not required.
Irreversible sterilization is generally forbidden, but there is no consensus

AS ISLAMIC BIOETHICAL APPROACH
TO CONCEPTION
The permissible reversible methods for males are:
the condom,
coitus saxonicus (consisting of squeezing the urethra at the base of
the penis immediately prior to ejaculation),
coitus reservatus (deliberate delaying or avoidance of orgasm during
intercourse), and
coitus interruptus (sexual intercourse deliberately interrupted by
withdrawal of the penis from the vagina prior to ejaculation).
 Permissible reversible methods for females are:
mechanical (the diaphragm, the cervical cap, or the vaginal sponge)
or
chemical/hormonal (spermicides and oral contraceptive pills).
Some forms of IUD are not permitted because they cause early
abortion.

ABORTION: AN ISLAMIC APPROACH
(1)Induction of medical or surgical pregnancy termination
can be carried out for medical or social reasons.
Medical reasons for pregnancy termination usually relate
to a grave risk to the mother’s life and health if the
pregnancy continues.
 social reasons implies a destruction of life without a compelling
necessity, dharurat
 Legal experts differ in their interpretation of dharurat; while some allow
termination for congenital anomalies and pregnancy from rape, others
consider all termination as prohibited

ABORTION : AN ISLAMIC APPROACH
(2)Some consider fertilization as the start of life, which makes
any termination unlawful
Others consider ensoulment ‘nafakh al ruh’ at gestation age
120 days as the start of life, and are more liberal in permitting
termination before 120 days.
 Some legal experts prohibit termination for social reasons on
the basis that it will encourage immorality in society by
removing the fear of unwanted childbirth among those
engaging in illegal sexual intercourse.
The law prescribes severe punitive measures for causing
abortion of a fetus.
Diya is paid if the fetus comes out with signs of life and dies thereafter.

PHYSICIAN’S DUTY VS BELIEFS (AMA
CODE OF ETHICS)A physician who objects to these services is not obligated to
recommend, perform, or prescribe them.
the physician has a duty to inform the patient about care options and
alternatives, or refer the patient for such information, so that the
patient's rights are not constrained.
Physicians unable to provide such information should transfer care as
long as the health of the patient is not compromised.
If a patient who is a minor requests termination of pregnancy, advice
on contraception, or treatment of sexually transmitted diseases
without a parent's knowledge or permission, the physician may wish to
attempt to persuade the patient of the benefits of having parents
involved, but should be aware that a conflict may exist between the
legal duty to maintain confidentiality and the obligation toward parents
or guardians.
Information should not be disclosed to others without the patient's
permission.
 In such cases, the physician should be guided by the minor's best

GENDER CORRECTION/CHANGE
OPERATIONSGender correction procedures are allowed for those with an
indeterminate gender, for example when someone has both male and
female anatomical and physiological characteristics.
The decision to make the person male or female is based on the
underlying genotype or the predominant gender, which is assessed
genetically, anatomically, functionally, or as a result of socialization.
Some procedures may be carried out for the sole purpose of
correcting anatomical anomalies to enable copulation and
reproduction.
Gender change procedures carried out on persons with normal
anatomical features, but who psychologically desire to be the
opposite gender are generally frowned upon by legal experts.
Victims of such gender identity conflict should be counseled to accept
their anatomical gender.

CASE SCENARIOS
Case scenario 1
An infertile couple was in the midst of an IVF procedure when the
husband died soon after his semen was frozen. The wife wanted to
obtain the semen and have a baby by a surrogate mother. A former
wife also wanted the semen because she had a girl with leukemia who
needed a compatible bone marrow donor, preferably a sister.

CASE SCENARIOS
Case scenario 2
A recently married woman continued taking oral contraceptives
prescribed for menstrual irregularities. Her husband wanted his wife
to discontinue her contraception because he wanted to start a family
immediately, but the wife refused.

CASE SCENARIOS
Case scenario 3
A 14-year-old girl was admitted to the hospital for an abortion. She
was two months pregnant from what she claimed was rape. The
family was distraught and wanted the doctors to carry out the
abortion immediately. The physicians were reluctant because there
was no medical reason for the abortion.

CASE SCENARIOS
Case scenario 4
A couple that had eight girls in successive pregnancies desperately
wished for a boy. They decided to try IVF with selection of male
gametes. The obstetricians refused because there was no medical
indication, since the couple had no problem in conceiving.

Case scenario 5
A child whose external appearance was female, and who had been
brought up as a girl, was taken to the hospital at 14 years of age
because of delayed menstruation. The internal gonads and
chromosomal patterns were male. The parents wanted a gender
reassignment operation to conform to the genetic profile. The child
refused to change from her familiar female identity.

Case scenario 6
A middle-aged woman without any medical condition asked her
physician for hormonal treatment to appear younger. The physician
refused because he judged the risk of cardiovascular and cancer
complications to be greater than the benefits.

Case scenario 7
A 14-year-old girl with cancer requiring chemotherapy was advised
to have her ova removed and put in cold storage for the duration of
the treatment. Her parents refused the procedure because they did
not believe in IVF, and because the girl was not yet married.

TERMINALLY INCURABLE
DISEASES AND END-OF-
LIFE DECISIONS

issues.
to treatment
news
conception
7. Medical negligence, Medical
settings
clinical practice?

OUTLINE
About death and dying: Definitions and basic questions
Withdrawing treatment
Deciding not to resuscitate (DNR orders)
Refusal of treatment and advance directives
Euthanasia and physician-assisted suicide
The goals of medicine in palliative care
Decisions at the end of life involving children

DEATH
Death is an intrinsic part of life
Modern techniques/technology/services led to:
longer lives through prevention and cure of many previously lethal conditions (BUT
is it a better one?)
greater degree of control over the processes of dying
Traditionally/medically:
When their breathing and heartbeat had permanently stop
A conception of death as “whole brain death” involving the destruction of the entire brain—
including both the brain stem and the neocortex
Brain death is cessation of all functions, including blood circulation in the brain. Brain death
is diagnosed based on clinical criteria, and laboratory and radiological confirmatory tests.
Brain death can be total brain death if it involves the whole brain, or can be brain stem death
if it affects the vital centers of the brain stem. By consensus, brain stem death is considered
clinical death; this is also a legal definition of death.

DEATH
Religiously: “the departure of the soul out of the body” (differ on what happens
after)
Philosophically/ethically:
Christopher Pallis conceived human death as a “state in which
there is irreversible loss of the capacity of consciousness
combined with the irreversible loss of the capacity to breath”
(cf. linguistic old observation of linking “nafs” (soul) with “nafas” (respiration))
Winston Chiong proposes a view of death as a “cluster concept”
composed of a variety of human functions that normally go
together but that can be disaggregated in some circumstances
that call for nuanced policy judgments based upon the nature
of the decision at hand, such as transplantation, the
continuation of treatment, or burial.

ISLAMIC VIEW(S) TO DEATH
The Fatwa of the The Islamic Fiqh Academy of the Organization of Islamic
Conference (October 1986) incorporated the concept of brain death into the legal
definition of death in Islam:
[A] Person is pronounced legally dead and consequently, all dispositions of the
Islamic law in case of death apply if one of the two following conditions has been
established:
(1) there is total cessation of cardiac and respiratory functions, and doctors have
ruled that such cessation is irreversible;
(2) there is total cessation of all cerebral functions and experienced specialized
doctors have ruled that such cessation is irreversible and the brain has started to
disintegrate
Why is it hard to agree on a definition?
Why is it important to define it in the first place?

PVS
Permanent vegetative state (PVS) patient’s higher brain functions and capacity for conscious
awareness have been permanently destroyed by cardiac arrest or traumatic brain injury, but
the brain stem remains intact, thus leaving the patient in a state of “wakeful
unresponsiveness.”
Patients reach a PVS after suffering a pathological process that has produced widespread
damage to cerebral cortical neurons, thalamic neurons, or the white matter connections
between the cortex and
thalamus, but that largely spares the brain stem and hypothalamic neurons.
Some advocates of a “higher brain” conception of death claim that patients who are
permanently vegetative should be considered dead

CONCEPTS INVOLVING END-OF-LIFE
CAREFull Resuscitation: Aggressive ICU management up to and including full resuscitative
attempts.
Withholding Resuscitation: Aggressive ICU management up to, but not including Cardio-
Pulmonary Resuscitation (CPR).
Withholding Life Support: Decision not to institute a medically appropriate and potentially
beneficial therapy, with the understanding that the patient will probably die without the
therapy in question.
Withdrawing Life Support: Cessation and removal of an ongoing therapy with the explicit
intent not to substitute an equivalent alternative treatment. is terminating futile artificial life
support measures in a terminally or critically ill patient, or in some cases in patients who are
clinically or brain-dead, but still on life support.
Palliative Care: Prevention or treatment of suffering, including the administration of drugs
such as narcotics and sedatives.
Do Not Resuscitate (DNR) order: An order stating that in case of cardiac arrest or
respiratory arrest, cardiopulmonary resuscitation will not be undertaken by any means. It is
an advance medical decision not to undertake extreme artificial life support
measures like intubation for patients in terminal illness who develop
cardiopulmonary arrest.

CARE
Terminal illness, also called maradh al maut (‫الموت‬ ‫)مرض‬ an illness from which recovery is
not expected. Death is not an ON/OFF event. It is a process that has a timeline, and can be
quite lengthy.
There reaches a z-point in the timeline that is called the point of no return, and the illness is
then called terminal because it is expected to soon end in death. Some illnesses can be called
terminal way before the z-point because they have a predictable course; a good example is
multiple sclerosis.
The definition of terminal illness is not always accurate; some patients who were told they
were going to die have lived for years, but such anecdotal cases are few in actual practice.
Palliation consists of measures taken to make the remaining life of a terminal patient as
comfortable as possible and includes pain relief, support (psychological, social, and spiritual),
nutrition, hydration, etc.
Palliative care starts when the hope for cure of the disease disappears.
Euthanasia, also called medically-assisted death, or physician-assisted suicide, consists of
measures that lead to the death of a terminal patient to spare him or her from further pain
and suffering.
If acts of commission deliberately bring about death, it is called active euthanasia. If acts of
omission lead to death, it is called passive euthanasia.

CARE
Autopsy examination is the dissection of a dead body to determine the cause of death. The
dissection could cover the whole body or could be selective. Specimens for further analysis
are usually taken during a postmortem. Post-mortem examination can be carried out for legal
forensic purposes to obtain evidence needed for criminal prosecution, or may be carried out
for educational purposes, to enable doctors to make better diagnoses in the future.
Organ harvesting is surgically removing organs such as the heart, lungs, and the kidneys
for subsequent transplantation into another patient.
It can be carried out after death of the patient, but in this case, the organs could have
already deteriorated. In most cases, it is carried out in patients who are braindead but still
have blood circulation to keep the organs alive.
Artificial life support for circulation and aeration may be carried out in clinically dead people to
keep the organs alive until the arrival of the surgical team that will do the harvesting

ETHICAL ISSUES AT EOL CARE
The continuum of care
Deficient decision making capacity.
What interventions can be made (nutrition, hydration, pain control, treatment for
infection?)
Pain control may cause respiratory depression, pain may be eliminated altogether, but the
patient is left semiconscious and unable to interact with the family. Less analgesia will leave
the patient socially active, but with some level of pain.
Futility: overall health outcome are not worth the side effects
Should not be denied nutrition, hydration, and general supportive care without
discrimination.
They also require psychosocial and spiritual support to allay their anxiety.
Terminal patients should also be reminded about their religious duties, such as paying
zakat, and their liabilities, such as settling debts. Health care workers may remind them about
concluding their wills

DECISIONS FOR THE TERMINALLY
ILL
Serious decisions with irreversible consequences might have taken by or on behalf of
terminal patients.
1. To withhold or withdraw aggressive treatment that has no net benefit that
would last for a reasonable time.
To withhold resuscitation in case of cardiorespiratory arrest for patients who
cannot get a net benefit from CPR and who would succumb again and have to
undergo resuscitation.
2. DNR order is a physician decision, but the family must be informed (without
seeking their involvement in the decision). For patients on artificial life support, a
decision must be made about when to withdraw support.
3. If brain stem death can be ascertained, the decision to withdraw life support
is easy because brain stem death is accepted as a definition of legal death.
4. If the patient is in an irreversible coma with intact brain stem function, the
decision to withdraw life support is more complicated.

DECISIONS FOR THE TERMINALLY
ILL
Serious decisions with irreversible consequences might have taken by or on behalf of
terminal patients.
5. Withdrawal on the basis of low quality of life and the continuing expense of
intensive care are not usually ethically acceptable reasons because of the
overriding concern of preserving life, hifdh al nafs
6. Life support could be withdrawn in cases that are definitely futile, but this is
not an easy decision and is usually a cause of dispute between the family and the
health care workers.
7. The families of terminal patients may be approached for consent to harvest
their organs as soon as clinical death is ascertained.
8. A prior decision (advance directives) taken by the terminal patient while still
competent will make the work of the organ transplant team easier. the terminal
patient may be competent in some matters, but not in others.
9. The proxy decision maker decides in two ways, based on (a) what he thinks the patient
would have decided if competent, and (b) the best interests of the patient.

ADVANCE DIRECTIVES
Documents written during the period in which the patient is competent, and
are part of prospective autonomy.
They enable the patient to control what is done to him after losing
consciousness, or even after death.
The common term “living will” is often used to refer to an advance
statement.
Benefits:
The patient is assured of his prospective autonomy;
the physicians are relieved of the burden of looking for a decision maker, and of making the decision
themselves in the absence of a decision maker.
The family is relieved from the tension of looking for consensus and making difficult decisions when
their state of mind is not at its best because of the patients illness.

ADVANCE DIRECTIVES
The ADs can cover any aspect of care that the patient is entitled to
decide on during terminal illness and after death.
The patient’s decisions are respected even if not logical, but they must not
contradict the Sharia. The AD deals with major decisions like DNR.
An AD must preferably be written and witnessed. It is best that each
institution develops a specific format to make sure that all legal requirements
are fulfilled.
An oral directive properly witnessed is effective, but should be avoided
because doubts could arise about its authenticity.

HOW TO RESOLVE ETHICAL
ISSUES IN CLINICAL
PRACTICE?

Clinical (medical) ethics WHOLE course (2020)

Clinical (medical) ethics WHOLE course (2020)

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