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Ethical Issues In Geriatric Care

         Dr. DOHA RASHEEDY ALY
       Lecturer of Geriatric Medicine
   Department of Geriatric and Gerontology
            Ain Shams University
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.
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
CONFIDENTIALITY AND
MANDATORY REPORTING LAWS
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.
 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
• 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?
• 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?
Diagnostic disclosure
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
 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.
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.
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
 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.
 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
•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.
•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)
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
Informed Consent
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
 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?”
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
 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.
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.
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
• 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?
• 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?
• 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?
• 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?
Advance care planning
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.
 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.
 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.
 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
 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.
• 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?
• 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?
End of life issues
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
 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.
• 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?
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,
 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
 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?
Special issues
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
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
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
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
Ethical issues in geriatric practice

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Ethical issues in geriatric practice

  • 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
  • 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?
  • 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
  • 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?
  • 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?
  • 45.
  • 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