This document discusses ethical issues surrounding disclosure of diagnoses, specifically Alzheimer's disease, to patients and their families. It provides guidance on assessing a patient's understanding and desire to know their diagnosis before disclosure. When disclosing Alzheimer's, it is important to arrange a joint meeting with family, allow time for questions, discuss disease progression and care plans, and involve caregivers going forward. The case study describes one family's experience where the husband decided to disclose the wife's Alzheimer's diagnosis to her in the doctor's office, but she initially reacted with disbelief and later developed aggressive behaviors towards her husband caregiver.

1. Ethical Issues In Geriatric Care
Dr. DOHA RASHEEDY ALY
Lecturer of Geriatric Medicine
Department of Geriatric and Gerontology
Ain Shams University

2. Introduction:
 The competent practice of geriatric medicine
requires physicians and other clinicians to master
both a body of knowledge about how to diagnose
and treat geriatric health conditions and an ethic
to apply this knowledge to the care of their
patients.
 the ethics of patient care focus on using the
principles of respect for autonomy and
beneficence.

3. Introduction:
 Medical practice occurs within a legal and
regulatory context.
 it is critical for clinicians to be familiar with the
specific requirements and standards in the
jurisdictions in which they practice.
 As a general rule, it is most important that
physicians recognize that the best way to avoid
legal problems is to be aware of legal
requirements in the jurisdictions in which they
practice, but to think clinically and not legally in
the provision of consistent and sound clinical care
to their patients

4. CONFIDENTIALITY AND
MANDATORY REPORTING LAWS

5. CONFIDENTIALITY AND
MANDATORY REPORTING LAWS
 As early as 430 BC, confidentiality was codified in the
Hippocratic Oath, “Whatever I see or hear,
professionally or privately, which ought not to be
divulged, I will keep secret and tell no one.
 The principle of confidentiality remains an important
ethical, legal, and professional practice in clinical
medicine.
 The absolute confidentiality of the Hippocratic Oath,
however, has given way to several exceptions that
reflect a complex balance between the importance of
privacy as a necessary component of the doctor-
patient relationship that respects patient autonomy
and facilitates honest information-sharing for
treatment on the one hand, and the many demands of
an ever more complex society on the other.
Specifically, courts and legislatures have determined
that certain concerns, such as public safety, justify
modification of absolute confidentiality.

6.  Examples of situations in which public policy
considerations limit doctor-patient confidentiality
include mandated reporting of infectious diseases
and suspected child and elder abuse. States and
the federal government have regulations that
govern which communicable diseases should be
reported to local and state authorities and/or the
Centers for Disease Control and Prevention
(CDC); this list is revised annually.
 all states require reporting of internationally
quarantinable diseases (including cholera,
plague, and yellow fever)
 An additional exceptions to confidentiality for
public safety and welfare considerations. One
such area includes the duty to warn or protect
third parties from, threatened physical harm from

7. • a 42-year-old man is hospitalized with chest pain. The patient is
• awake and alert. His wife comes to you demanding information
about the patient, saying that she is his wife. She shows her
identification card verifying this. What should you tell her?

8. • you receive a phone call from another physician who is well known
to you in your local community. The physician says that one of your
former patients has transferred his care to him and he is asking for
a copy of the patient'$ medical record. What do you tell him?

9. Diagnostic disclosure

10. Diagnostic disclosure
 On the side for disclosure is the argument that patients deserve
the truth and to deny this information to them is to deny an adult’s
right to the truth. The argument against disclosure is that not all
truth is good to tell, especially to a person who may be harmed by
it. In ethical terms, these competing arguments square off as a
dilemma between respecting the principles of autonomy versus
beneficence. In short, is it better to be honest but risk cruelty.
 Diagnostic disclosure depends on the capacity of the persons to
understand and appreciate the diagnosis, their expressed desire to
know what is wrong, and the emotional and moral impacts that this
knowledge may have. Decisions concerning disclosure should also
account for the role of the caregivers and the power they hold over
the patients.
One critical step in living with an illness is to understand and
appreciate it.
 Understanding is about knowing the facts. In the case of a person
with a chronic illness, it means knowing what the illness is, what
stage the patient is at, what to expect in the future, and what can
be done to maximize quality of life.
 In contrast, appreciation describes how well a person recognizes
how facts apply to him- or herself. This ability is distinct from

11.  In the case of persons with Alzheimer’s disease, several
studies have shown that many persons with mild-stage
Alzheimer’s disease can understand information.
Although they may not remember it, when taught, they
are often able to provide a relatively accurate restatement
of the facts when asked to summarize what they have
learned.
 Appreciation is a complex issue in persons with
Alzheimer’s disease. It is often mixed. A patient may
appreciate one feature of the disease, but not another. In
the case of appreciating Alzheimer’s disease, there are at
least three features: the diagnosis, the severity, and the
prognosis. Studies examining appreciation show that
patients may appreciate one of these features but not the
other. That is, patients may be aware of their diagnosis,
but not the severity and prognosis.

12. Steps to Disclose a Diagnosis of Alzheimer’s Disease
 Step 1. Assess patients’ awareness of their cognitive
problems.
 Step 2. Assess the degree to which patients are
bothered by these problems.
 Step 3. Assess patients’ desire to know the cause of
their memory problems.
 Step 4. Assess patients’ understanding of Alzheimer’s
disease and their desire to know if they have that
disease.

13. Diagnostic Disclosure
 You should arrange a joint meeting with the
individual and the family members to disclose the
diagnosis. Telling families the diagnosis is
Alzheimer’s can be difficult, since there is
currently no promising prognosis for those
affected. Because the initial meeting can be
overwhelming, you may need to schedule a
follow-up meeting to continue discussion of the
diagnosis and available support services.
 After disclosing the diagnosis, expect various
responses from the individual and family, ranging
from acceptance of what was suspected and
relief at learning what is causing behavioral

14.  Disclosing the diagnosis
 Consider the following before communicating the
diagnosis:
 Gain an understanding of family dynamics and
cultural values.
 When possible, include all of the professionals
(nurses, social workers, psychologists and others )
involved in determining the diagnosis in the joint
meeting to answer questions and provide specific
recommendations.
 Allow sufficient time to answer questions from the
individual and family. A follow-up meeting may need to
be scheduled to continue discussion.
 Discuss how the disease might progress and agree
upon a specific care plan that considers the person’s
values and beliefs.

15.  Covering key issues
 Alzheimer’s disease is not a normal part of aging, but a
degenerative disease of the brain that results in impaired
memory, thinking and behavior.
 Alzheimer’s disease affects every individual differently, so there
is no exact way to determine how the disease will progress.
 While there is no cure for the disease, some of its symptoms can
be treated by medications and behavioral approaches.
 Disclosure of the diagnosis allows the individual to maximize
quality of life and be involved in planning future care decisions.
 Assistance is available from the Alzheimer’s Association and
other resources.
 Progress is being made in research. One way to help that
progress is by participating in clinical drug studies. To locate the
clinical drug studies being conducted in the
 Throughout the diagnostic evaluation and treatment planning,
you should involve the family and caregiver. As the disease
progresses and patients become increasingly dependent on their
caregivers, these individuals will become your primary source of
information on the patient’s daily mental and physical health.
 Finally, bear in mind that the primary caregiver and other

16. •Andrew who is a retired engineer lives with his wife Joan who suffered
from memory lapses for several years. They have an outpatient clinic
appointment in hospital for assessment of her memory problems.
•Joan was assessed by the doctor and asked to wait in another room.
John who was outside in the waiting area was called in all by himself and
the news that his wife has Alzheimer’s disease was broken to him and the
symptoms were confirmed.
• Andrew was in the room with 3 strangers who sat looking at him waiting
for his reaction. He was asked whether his wife Joan should be informed
of her diagnosis. Andrew asked for advice from the doctor who informed
him that it was ultimately his decision. Andrew decided to call Joan in the
clinic room as he thought that Joan was a mature lady and would
understand and adapt to the situation.
• Andrew felt he could perhaps help her realize that she did have a
progressive memory problem. she was informed of the diagnosis and she
sat motionless, disbelieving in the diagnosis.
•For a while after the diagnosis was disclosed Joan was calm. She
however had frequent appointments in the memory clinic with further
tests due to which she began to rebel. Andrew helped her to go to a local
day center which worked for a while after which she refused to go.
•Joan started developing verbally aggressive behavior towards Andrew
and he bore the brunt of it. He was hence put in touch with the admiral
nurse service for carer distress and is trying very hard to cope.

17. •Case study highlights several ethical problems:
•Early diagnosis is beneficial and helpful (the patient Joan suffered from
lapses of memory for several years which went unnoticed).
•Patients’ autonomy should be respected and patient should be informed
of the diagnosis and then at the same time encouraged to share the
diagnosis with their family and carers. (Joan’s autonomy was not
respected and instead the patient’s husband was informed of the
diagnosis first and asked if the diagnosis can be broken to Joan when in
fact Joan was capable of understanding the information).
•Confidentiality should be maintained and if the patient clearly refuses for
a disclosure this should be respected.
•Diagnosis should be a process, a series of steps which was not the case in
Case study where it was a sudden event.
•Diagnosis should be disclosed in a compassionate manner and should
involve the patient maintaining dignity and a sense of hope (This did not
happen in case study where the disclosure was insensitive and not person-
centered)

18. SPECIAL ISSUES IN DEMENTIA:
GENETIC TESTING
 Several gene mutations are known to cause clusters
of early-onset Alzheimer’s disease in families
 For some clusters, where the mutation is known,
genetic testing may be helpful in conjunction with
counseling
 The value of genetic testing is less certain in the
case of apolipoprotein E alleles
 As long as no intervention has been shown to
significantly alter the course of dementia, and the
predictive value of the test is low, it does not seem
advisable to recommend genetic testing
Slide

19. Informed Consent

20. Informed Consent
The voluntary choice of a competent
patient.
 It is part of the concept patients’ right to self-
determination. Every patient must give informed
consent for any medical intervention.
 Informed consent gave patients the right to choose
how they would be treated. Informed consent is the
process by which the patient determines whether to
accept or refuse the treatment offered by a physician
or another clinician.
 The focus is not on the written consent form but on
the process of communication, information exchange,
and acceptance or rejection of the medical

21.  The main determination for informed consent is
decisional capacity.
 Capacity determines whether patients have the ability
to consent to or refuse medical treatment. Psychiatrists
are often asked to assess the quality of the patient’s
decision making process, often when the patient
refuses a medical intervention recommended by
treating physicians.
 The legal equivalent of capacity is competency, which
requires a judicial determination. Under the law, all
adults are presumed competent.
 Competency may be global in certain cases (such as
the case of a patient in a coma). However, capacity and
competency must be evaluated in the context of a
specific task. Different tasks require different abilities,
information, and thresholds of understanding.
Therefore, the initial inquiry for a capacity evaluation is
the question, “Capacity for what?”

22. adequate information for obtaining informed consent:
 1. The diagnosis and the nature of the condition being
treated
 2. The reasonably expected benefits from the proposed
treatment
 3. The nature and likelihood of the risks involved
 4. The inability to precisely predict results of the
treatment
 5. The potential irreversibility of the treatment
 6. The expected risks, benefits, and results of
alternative, or no, treatment

23.  All options must be described
 All Major adverse effects must be described
 consent is required for each specific procedure.
 The person performing the procedure should
obtain the consent.
 Beneficence isn’t sufficient to eliminate the need
for consent.
 Decisions made when competent are valid when
consciousness is lost.

24. Common Challenges to the Practice of Informed
Consent
 Challenge #1. A patient wants information but does not
want to make own medical decisions.
elderly patients often indicate that they want heir physician to give them
information but they want the physician to make the decision. This
asymmetry is often greatest in the case of decisions about the management
of serious and life-threatening situations. In these cases, patients will
describe decision making built on trust and identification with their physician.
 Challenge #2. Quantitative information is difficult to
understand.
Numerical illiteracy (Many people do not understand quantitative
expressions very well), Numerical indeterminacy (People attach variable
meanings to qualitative expressions of probability such as “rarely” and
“likely.”), Biases
 Challenge #3. Patients may have cognitive
impairments.

25. INFORMED CONSENT
FOR RESEARCH
 The two most vulnerable populations are:
 Patients with cognitive impairment, who may not
understand the study or their role in it
 Institutionalized patients, who may feel obligated
 Research involving vulnerable populations needs to:
 Be particularly well designed
 Focus on issues of importance to that population
Slide

26. • you inform a patient about the risks and benefits of bone marrow
transplantation for chronic myeloid leukemia. You fully inform the
patient about the risk of transplantation, including the possibility of
developing graft versus host disease. After the transplantation the
patient developed graft versus host disease which is hard to
control. The patient learned that there is an alternative treatment
called imitanib (gleevec) which does not include the risk of graft
versus host disease but which will not cure the leukemia. The
patient files suit against you. What will be the most likely outcome
of the suit?

27. • a man undergoes coronary angioplasty. He is informed that the
artery may rupture and that there is a small chance he could bleed
to death during the surgery to repair the damaged vessel. He knows
he could have bypass surgery instead. He understands and chooses
t he angioplasty. He dies from a ruptured blood vessel. The family
files suit against you. What will be the most likely outcome?

28. • a 40 year-old man is undergoing a nasal polypectomy. In the
operating room you see a lesion on the nasal turbinate that the
frozen section determines to be a cancer, You have found the
cancer early but will need to resect the nasal turbinate to cure it.
What should you do?

29. • a 42-y-old man with leukemia repeatedly refuses chemotherapy.
• He lost consciousness and his mother tells you to give the
chemotherapy. What should you tell her?

30. Advance care planning

31. Advance care planning
 Elderly patients often have chronic and ultimately fatal
illnesses. The patients are often unable to make
decisions. One strategy to make these difficult decisions
is to make them in advance when the patient is
competent.
 Advance care planning describes competent patients
discussing and then documenting their preferences for
future medical care. This preserves patients’ self-
determination even after they have lost decision-making
capacity. The classic mechanism to do this is an
advance directive.

32.  An advance directive is a set of
instructions indicating a competent
person’s preferences for future medical
care should the person become
incompetent or unable to communicate.
There are two types of advance
directives: a living will and a durable
power of attorney.

33.  Living will: A document describing a patient’s
preferences for the initiation, continuation, or
discontinuation of particular forms of treatment.
 Durable power of attorney (DPA), health care
proxy. A document that designates a surrogate (also
called an “agent,” “proxy,” or “attorney-in-fact”) to
make medical decisions on a person’s behalf should
that person become unable to make a decision.
 Oral statements: that arise in conversations with
family, friends, and physicians are recognized
ethically, and in some states legally, as advance
directives, if properly charted in medical records.

34.  Persons may revoke or change their advance directive
at any time.
 A physician who morally objects to a patient’s advance
directive may choose not to comply but must facilitate
the patient’s transfer to another physician.
Surrogate decision making
 In cases of decisional incapacity, the physician may
not dispense with informed consent but instead must
deal with someone else who acts as a surrogate or
proxy on the patient’s behalf.
 Surrogate decision makers should use the patient’s
preferences to the extent that these are known. Using
a patient’s previously disclosed preferences to make
medical decisions for that patient is called a
substituted judgment

35.  in many cases, the patient’s preferences are unknown,
or, because of significant changes in the patient’s health
and well-being. In these circumstances, the guide for
surrogate decision makers becomes the patient’s dignity
and quality of life. This standard of decision making is
called the best-interests standard, as the surrogate
must assess the risks and benefits of various treatments
and alternatives to treatment and choose the one that
best maximizes the patient’s quality of life.
 Patients generally want their surrogate decision makers
to use their judgment rather than be bound by the
specifics of living wills.

36. • a 75-year-old man arrives at the emergency department febrile,
short of breath, and confused. Many family members accompany
the patient, including his wife, his siblings, his children, and his
grandchildren. The physician wants to perform an emergency
lumbar puncture, which the patient's wife and siblings are refusing.
His 25-year-old granddaughter walks up with a health-care proxy
form signed by the patient designating her as the proxy She insists
that you do the lumbar puncture stating that was her
understanding of the patient's wishes. The rest of the family,
including the wife, refuses the lumbar puncture stating that they
know the patient's wishes better. What do you do?

37. • 78-year-old woman admitted with metastatic cancer
leading to a change in mental status secondary to
hypercalcemia. She has a living will in her record that
states", In the event that I become unable to speak for
myself for any reason I wish to express my wish that I not
be intubated or placed on a ventilator under any
circumstances. I also do not wish to receive dialysis .Blood
testing and Antibiotics are acceptable .What should you
do?

38. End of life issues

39. Refusal of treatment withdrawal
and withholding of treatment
 patients have an ethical and legal right to refuse life-
sustaining treatments including artificial nutrition and
hydration. Surrogates have a similar right.
 Some clinicians are comfortable accepting a patient’s or
surrogate’s refusal of treatment before it is initiated, yet find
themselves ethically opposed to withdrawing the treatment
after it is initiated.
 withholding and withdrawing treatment: withholding is an act
of omission, not performing an action, while withdrawing is an
instance of commission, performing an action.
 Withholding a procedure is often seen as wisely abstaining
from subjecting the patient to an overly invasive intervention.
Conversely, withdrawing a treatment already initiated can give
the clinician a sense of responsibility for action bringing about

40.  both starting and stopping treatment can be justified
depending on the circumstances. Both can cause the
death of a patient and both can allow the patient to die.
In the cases of both withholding and withdrawing
treatment according to a patient’s wishes or best
interests, it is the underlying illness that is the cause of
death, not the clinician’s actions.

41. • a 60-year-old man with diabetes and hypertension develops renal
insufficiency to the point of needing dialysis. He is equivocal about
spending the rest of his life on dialysis, but he agrees to start. The
patient is not depressed and is fully alert. Six months after starting
dialysis, he comes to realize very clearly that he absolutely does not
wish to continue. You have no doubt that the patient has full
capacity to understand the implications of this decision. What
should you do?

42. Suicide, and
Terminal Sedation
 The physician’s role at the end of life is no longer to cure or
control the patient’s illness but to provide adequate relief of
pain and suffering.
 Comprehensive palliative care is the standard of care for the
dying. This includes adequate pain and symptom
management, support for the patient and family, and the
opportunity to achieve meaningful closure to life.
 Sometimes patients may ask to die to relieve their suffering.
At this point, the clinician’s dual obligations of beneficence
and non maleficence come into conflict.
 Euthanasia is the act of a physician ending the life of a
patient having terminal illness or an incurable disease. The
physician acts directly in bringing about the patient’s death,
such as injecting a lethal dose of drugs. This practice raises
strong objections. When it is done to a noncompetent patient,

43.  Physician-assisted suicide is the act of providing a
lethal dose of medication to a patient to self-administer.
Thus, the physician is a necessary instrument but does
not actively take part in the ending of the patient’s life.
This practice is currently legal in only a handful of
countries; in the United States, it is illegal in all states
except for Oregon.
 Terminal sedation is the act of administering high-dose
medication to relieve extremes of pain and suffering. As
the name implies, the patient is sedated to
unconsciousness (sedation), and this practice may
hasten the death of the patient (terminal) by the
impairment of respiratory function. Terminal sedation
properly done is distinct from both assisted suicide and
euthanasia. Medication doses are increased until
sedation occurs (along with the possible risk of the

44.  a 67 year old man is admitted with metastatic prostate
cancer to the bones. He is in agonizing pain despite
your present treatment. He has a history of COPD and
the house staff are concerned that increasing pain
medications will decrease his respiratory drive . What
should you do?

46. Special issues

47. MALPRACTICE
 Physicians owe a duty of care to their patients, ethically
and legally. Legal liability is a source of concern for many
physicians, leading some to practice so-called defensive
medicine, characterized by making decisions based in
part or in whole on the desire to avoid legal liability. While
physicians should be aware of the requirements of
competent care and understand the foundation of
malpractice liability.
 Several factors are associated with malpractice risk
reduction
 First, because physicians with poor communication skills are at
increased risk of being sued, improving communication between
physician and patient is a key element of risk reduction.
 Second, acknowledging error and preserving the doctor-patient
relationship are other factors associated with a reduction of the risk of

48. AGS GUIDELINES FOR RESEARCH ON
PEOPLE WITH DEMENTIA
 Protocols that involve more than minimal risk or are
unlikely to provide direct benefit should be offered only
to patients able to consent, or those with an advance
directive consenting to participate
 Surrogates can refuse participation or withdraw the
person from participation, even if there is advance
consent, if the surrogate determines that the protocol
is not what the person intended to consent to or is not
in the person’s best interest
Slide

49. ETHICS IN THE NURSING HOME:
TREATMENT DECISIONS
 Studies of attempted resuscitation in nursing homes
show that it is used infrequently and is associated with
low long-term survival
 Systematic inquiry about advance directives is required
for patients in institutions receiving federal funds
 Regulatory agencies have encouraged enteral feeding in
nursing homes, but its usefulness is questionable,
especially for patients with advanced dementia
 Enteral feeding is not ethically used as a substitute for
having staff help patients feed themselves
Slide

50. ETHICS IN THE NURSING HOME:
RESTRAINTS
 Studies show that physical restraints have little, if any,
value in preventing injuries from falls
 In deciding whether restraints should be used, clinicians
and patients’ surrogates must consider whether:
 The patient engages in activities that might harm others
 Restraints are ineffective
 Other measures have been tried and found to be
ineffective
 The institution’s responsibility to protect others may
require that it send the patient elsewhere
Slide