10/13/2015
Disclosures
Capacity Versus Competency and Ethical Implications at the End of Life
Lif
Neither presenter has any disclosures, financially or otherwise.
Dr. Larry Hook & Melissa Chapman PA‐C
Objectives
1. Compare and contrast the concepts of capacity versus competency
2. Appreciate ethical considerations related to capacity and competency at the end of life
capacity and competency at the end of life
CAPACITY VS. COMPETENCE
DEFINITIONS
• Often times the words capacity & competency are mistakenly interchanged for one another
• CAPACITY:
– Ability to understand the effect of one’s Abilit t
d t d th ff t f
’
actions/choices
QUIZ
• True or False:
–Only a psychiatric provider can d
determine a patient’s capacity?
’
?
• COMPETENCY: – Is a legal term, criteria varies by state
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CAPACITY
• FALSE; any provider may assess capacity.
• CAPACITY: is a clinical assessment
– It is the ability to understand the effect of one’s acts and choice
acts and choice
– A fluid concept.
– May have capacity to make certain medical decisions but not have capacity about others.
– Decision making capacity may change with time.
CAPACITY DETERMINATION
• FOUR CRITERIA:
– Ability to communicate a choice
– Understand the relevant information
– Appreciate the situation and Appreciate the situation and
consequences/implications of decision
– Reason about treatment options
CAPACITY DETERMINATION
• COMMUNICATION OF STABLE CHOICE:
– If a patient is unable to express any choice or If a patient is unable to express any choice or
unable to communicate a consistent choice they then lack capacity on that medical decision.
CAPACITY
• Assessing the ability to perform a certain function at the time of the evaluation.
• Capacity assessment can not be made for past or future dates
or future dates.
• When assessing capacity it should be made for a specific decision or function. A patient may have capacity to make certain medical decisions but not have capacity to make others.
CAPACITY DETERMINATION
• Applebaum & Grisso developed a pneumonic • CRAM:
– Communication of stable choice
– Relevant information is understood
R l
i f
i i
d
d
– Appreciation of situation
– Manipulation of information in a rational manner
CAPACITY DETERMINATION
• RELEVANT INFORMATION IS UNDERSTOOD:
– The patient is able to display functional g
,
p
,
understanding of their illness, treatment options, risk & benefits of treatment as well as no treatment.
– Once factual information is explained, the patient is able to retain it in a reasonable manner.
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CAPACITY DETERMINATION
• APPRECIATION OF SITUATION:
– Not just understanding of facts but understanding p
of the implication of the decision – Recognizing possible outcomes in regard to their medical condition
– Understand the implication of this decision on their future
CAPACITY DETERMINATION
– Mini Mental Status Exam (MMSE) has been shown to be a modest predictor of decisional making capacity.
– MMSE is not adequate to evaluate the patient’s specific capacities to understand, appreciate and reason about information related to particular treatment. WHAT AFFECTS DECISIONAL MAKING CAPACITY
Conditions which most often lead to lack of capacity to make decisions:
Dementia
i
Delirium (Encephalopathy)
Psychosis
Severe Depression
CAPACITY DETERMINATION
• MANIPULATION OF INFORMATION IN A RATIONAL MANNER:
– Display the ability to assess facts and use them Display the ability to assess facts and use them
logically to come to a decision and then describe the logic to which they arrived at that decision
– Even if the decision seems to be “unwise,” if a rational process was used to arrive at that decision, it speaks in favor of capacity
WHAT AFFECTS DECISIONAL MAKING CAPACITY
As a patient’s terminal disease progresses, the decision making capacity for many patients may deteriorate in part due to age
may deteriorate in part due to age, hospitalizations, treatment side effects or the disease itself.
WHAT AFFECTS DECISIONAL MAKING CAPACITY
• UNDETECTED COGNITIVE IMPAIRMENT:
– Burton, Twamley, et al published a study in the American Journal of Geriatric Psychiatry April 2013:
• 110 hospice patients with no documented or clinically obvious cognitive impairment; found that more than ½ of the sample had significant cognitive impairments.
• Concluding cognitive assessment (including verbal abilities) is warranted as deficits may interfere with ability to understand or reason when making related treatment decisions. 3
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WHAT AFFECTS DECISIONAL MAKING CAPACITY
• DELIRIUM/ENCEPHALOPATHY:
– Delirium is a waxing and waning of orientation and cognitive abilities. “Brain failure”
– Multi
Multi‐factorial—medications
factorial medications, illness, infection, illness infection
sleep deprivation
– Highly prevalent among dying patients.
– Up to 90% in the days and hours preceding death
WHAT AFFECTS DECISIONAL
MAKING CAPACITY
• PSYCHOSIS
– Schizophrenia
– Schizoaffective Disorder
– Diagnosis alone does not automatically deem Diagnosis alone does not automatically deem
patient as having impaired decision making capacity.
WHAT AFFECTS DECISIONAL
MAKING CAPACITY
• MENTAL ILLNESS:
– Courts have concluded that the mere presence of diagnosed or severe mental illness does not p
preclude a patient’s right to refuse medical p
g
treatment. WHAT AFFECTS DECISIONAL
MAKING CAPACITY
• DEPRESSION
– Impact of depression on decision making is less severe than for many other mental illnesses. – Some studies suggest that impairment in Some studies suggest that impairment in
depressed adults may be due to changes with cognitive functioning. WHAT AFFECTS DECISIONAL
MAKING CAPACITY
WHAT AFFECTS DECISIONAL
MAKING CAPACITY
• E. Kolva et al; General Hospital Psychiatry 36 (2014): – Physical functioning and age had the strongest predictors for decision making capacity for hospitalized cancer patients receiving end of life care. No association between decisional capacity and other demographic or psychiatric (depression) variables with that patient population were found. Advanced illness is associated with impairments of decision making capacity. • E. Kolva et al; General Hospital Psychiatry 36 (2014): – May be that anxiety and depression only impact decision making capacity when the symptoms become severe (psychotic depression). – Although showed a small & non‐significant association Alth
h h
d
ll &
i ifi t
i ti
between severe depression in regards to appreciation and treatment choice (with depressed participants somewhat more likely to reject treatment.)
– Cognitive impairment and severe mental illness have more of a significant impact on decisional making capacity. 4
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QUIZ
• True or False:
–Only a Judge can determine if a patient is competent?
ti t i
t t?
Competency [15]
• State Statute 524, Article 5
Who Might the Guardian Be [15]
• State outlines the following “order of priority”
– Non‐temporary/emergency guardian who currently acts on behalf of the individual in MN or elsewhere
– Health care agent named by the individual
– Spouse or “a person nominated by will or other signed writing executed in the same manner as a health care directive of a deceased spouse.”
– Adult child of the individual
COMPETENCY • TRUE: Competency is a legal term determined by judge. • If a person is deemed incompetent than a substitute decision maker is appointed by the
substitute decision maker is appointed by the court.
“Incapacitated Person” [15]
• “’Incapacitated person’ means an individual who, for reasons other than being a minor, is impaired to the extent of lacking sufficient understanding or capacity to make or communicate reasonable personal decisions, and who has demonstrated deficits in behavior which evidence an inability to meet personal needs for medical care, nutrition, clothing, shelter, or safety, even with appropriate technological assistance.”
Who Might the Guardian Be [15]
– Parent of the individual, or “a person nominated by will or other signed writing executed in the same manner as a health care directive of a deceased parent.”
– Adult who lived with the individual for a period of 6 months before the filing of the petition
– Adult who is related by blood, adoption, or marriage
– “Any other adult or professional guardian”
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Important Caveats [15]
Emergency Guardian [15]
• The Court, if it believes it is in best interest of the individual, can choose to not appoint a person having priority and instead select someone with lesser priority or even no priority at all
• “Any individual or agency which provides residence, custodial care, medical care, employment training or other care or services for which they receive a fee may not be appointed as guardian unless related to the [individual] by blood, marriage, or adoption”
• In the event the court feels complying with outlined procedures would likely result in substantial harm to an individual’s health, safety, or welfare, AND that no other person appears to have authority AND willingness to act, an emergency guardian may be appointed.
Ethical Principles
•
•
•
•
Autonomy
Beneficence
Nonmaleficence
Justice
ETHICAL CONSIDERATIONS
Autonomy
• Described as a person’s right to self‐
determination
• Provides the basis for concepts such as informed consent and advanced directives
informed consent and advanced directives
• Felt to be a response to provider paternalism
Beneficence
• Acting in the best interest of the patient
• Providers have a responsibility to prevent and remove harm 6
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Nonmaleficence
• “First do no harm”
• Requires helping patients understand harms in terms of “lesser and greater”
• Also encompasses the concept that providers Al
h
h
id
are trained and competent
Justice
• Fairness in distribution of resources
Case
Surrogate Decision Making
A 78‐year‐old man has a recent diagnosis of metastatic cancer. He returned to the office after having a CT scan showing a pancreatic lesion, of which a biopsy could provide important information as to treatment options. He requires large doses of narcotics for pain control, and his level of consciousness fluctuates greatly. He is deemed to lack capacity to make the decision of whether to undergo a biopsy.
• 16% of ICU patients, 3% of nursing home patients, and a large number of individuals in a variety of settings who are facing end‐of‐life decisions have no known family members or designate surrogates [13]
• As few as 5% of critically ill patients have the capacity to make end‐of‐life decisions, with only 20% of surrogates actually knowing beforehand what a patient would want in a situation [10]
Who, and how, should this decision be made?
Surrogate Decision Making
• Advanced Directive
• Substituted Judgment Principle
• Best Interests Principle
Advanced Directive
• General term which applies to a variety of documents
• Patient must have capacity and competence when completing
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Quiz
Quiz
• Which of the four core ethical principles best aligns with the concept of advanced directives?
• Which of the four core ethical principles best aligns with the concept of advanced directives?
A.
A
B.
C.
D.
Autonomy
Beneficence
Nonmaleficence
Justice
A.
A
B.
C.
D.
Autonomy
Beneficence
Nonmaleficence
Justice
Substituted Judgment Principle [4]
Substituted Judgment Principle [4]
• “Requires a surrogate decision maker to make the decision that the incompetent patient would make if he/she were competent and aware of both the treatment and care options.”
• Necessitates that the surrogate has “an in‐depth understanding of the patient’s values and life goals”
• Can be given by direct authority of the patient (i.e. proxy decision maker listed in an advanced directive) or by authority of others (family, health professionals, ethics committees, courts, etc)
• As with the advanced directive, substituted judgment centers on the concept that a patient’s choices and values are respected
Best Interests Principle [4]
Best Interests Principle
• Generally used when no advanced directives which reliably account for a person’s wishes relating to a future situation are in place, or in the case of a “never competent person”
• Patient‐centered quality‐of‐life judgments are central
• President’s Council on Bioethics indicates that decision‐makers should seek the best care for incapacitated adults
• Acting in “best interest” does “not require what is ideal but what is reasonable.”
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Quiz
Quiz
• Which of the four core ethical principles best aligns with the concept of decision making based on the best interests principle?
• Which of the four core ethical principles best aligns with the concept of decision making based on the best interests principle?
A.
A
B.
C.
D.
Autonomy
Beneficence
Nonmaleficence
Justice
Dementia
• According to the Alzheimer’s Association:
– In 2015, 5.3 million Americans suffered from Alzheimer’s disease, of which 5.1 million are 65 and older
– Projected that by 2050, 13.8 million Americans will have Al h i
Alzheimer’s barring medical breakthroughs to prevent or ’ b i
di l b kth
h t
t
cure the disease
– 1 in 3 seniors dies with Alzheimer’s or another dementia
Dementia • In consideration of surrogate decision making, which of the prior options exist for individuals who do not have family or friends who can act as surrogate decision makers?
A.
A
B.
C.
D.
Autonomy
Beneficence
Nonmaleficence
Justice
Dementia [13]
• By 2030, “there will be more than 2 million adults aged 70 and older who have outlived all their friends and family members.”
• For these people, it is likely they will spend the final years in facilities where their only contacts may be others who are
facilities where their only contacts may be others who are equally as ill or staff members who may be legally precluded from serving as surrogate
• For those with other friends, as people age so do their friends, who may have a will to serve as surrogate however may not be capable of doing so
Dementia [8]
• In consideration of individuals with dementia who have expressed end‐of‐life wishes, they “often do not act in accordance with their previous stated wishes.”
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Dementia [8]
Critically Ill and End of Life Decisions
• If you had the capacity, would you always want to be involved in medical decisions involving yourself?
• 2 approaches:
– #1: Patient’s precedent autonomy takes priority and the advanced directive moves forward
• Appropriate
Appropriate because the patient lacks the competency needed to validly because the patient lacks the competency needed to validly
revoke
• If the AD is set aside, then the autonomy of the individual will be violated
– #2: Concept of precedent autonomy is denied
• Sometimes the patient can no longer be considered to be the same individual who wrote the AD because of “lack of psychological continuity”
• AD may cause conflict with the current and future interests of the incompetent patient
Critically Ill and End of Life Decisions [11]
• An overwhelming number (as much as 90%) of ICU deaths are preceded by decisions to withhold/withdraw support
• Must, or should, a physician attempt to remove sedation and/or analgesia from a critically ill patient in an attempt to have that patient participate in or at least be made aware of
have that patient participate in, or at least be made aware of, a decision regarding withdrawal of support?”
Critically Ill and End of Life Decisions [11]
• At least 2 ethical principles may seem in conflict:
– Autonomy
• Excluding a competent patient from medical decision making regarding supportive care is unjustifiable since it demeans the p
patient by barring self‐determination and allows others to shorten y
g
the patient’s life
– Beneficence
• Forcing emotion, psychological, and physical discomfort on a patient in the name of respect for autonomy may, at times, seem cruel rather than respectful
Case A
Case B
• Male with COPD without other comorbidities
• Mechanical ventilation for an exacerbation
• Initially required sedation, likely to be able to b
be managed without significant sedation
d ih
i ifi
d i
• Friend reports patient has said he “would never want to be kept alive on a machine.”
• Male with metastic lung cancer and respiratory failure with no reversible process identified
• Significant pain
Significant pain
• Intubated, which he agreed to with the hope that he would eventually be weaned
• Per family, has “said his good‐byes” to loved ones
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Criteria allowing for the ethical withdrawal of support from sedated patients
Cases
[5]
• How do you conceptualize the cases? Did you come to a conclusion in either or both of the cases as to whether to lessen sedation and analgesia to assess the decision making capacity of the patient and to allow for the possibility of active patient participation in end‐of‐life discussions?
• What were the similarities and differences which guided your decision? 1. Cessation or lightening of sedation and/or analgesia will produce significant physical and/or emotional discomfort for the patient
Criteria allowing for the ethical withdrawal of support from sedated patients
Criteria allowing for the ethical withdrawal of support from sedated patients
[5]
[5]
1.
–
–
Cessation or lightening of sedation and/or analgesia will produce significant physical and/or emotional discomfort for the patient
1.
2. Prognosis for survival and/or quality of life is very poor
2.
–
–
Likelihood of survival does not stand alone
Likelihood
of survival does not stand alone
Poor prognosis is not requisite for allowing competent individuals to refuse even life‐sustaining care
Cessation or lightening of sedation and/or analgesia will produce significant physical and/or emotional discomfort for the patient
Prognosis for survival and/or quality of life is very poor
3. Surrogates/family members are in agreement that patient would not wish for continued support under
patient would not wish for continued support under such circumstances, or clear, unambiguous written directives expressing patient preferences
–
Criteria allowing for the ethical withdrawal of support from sedated patients
[5]
1. Cessation or lightening of sedation and/or analgesia will produce significant physical and/or emotional discomfort for the patient
2. Prognosis for survival and/or quality of life is very poor
3. Surrogates/family members are in agreement that patient would not wish for continued support under such circumstances, or clear, unambiguous written directives expressing patient preferences
Short term risks of lightening sedation are minimal
Concern about emotional distresses experienced because of discussion of the medical condition is never, in itself, sufficient to keep from attempting to wake the patient
Previous statements and surrogate assertions do not hold the same moral weight as a contemporaneous decision of a competent patient
Desire to Die [12]
• “At what point are clinicians ethically and legally bound to bolster interventions that thwart the individual’s desire to end…life; and, at what point can clinicians legally and
at what point can clinicians legally and ethically accept the individual’s decision to end…life?”
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Desire to Die [12]
Provider Centered Concerns
• A medically ill person contemplating death may have a realistic view of his situation, and the individual may not be experiencing depression but rather normal emotional
depression, but rather normal emotional reactions of sadness and grief.
Countertransference
• In brief, it is the sum of the provider’s feelings towards the patient
• Both conscious and unconscious
• Ubiquitous
• Some countertransference feelings are about the patient, some are about us
• Far from being something to avoid, it informs our work with patients and their families and others important in their worlds
10 ‘Common Myths’ Regarding Capacity [10]
1.
2.
Decision‐making capacity and competence are the same.
A lack of capacity can be presumed when patients go against medical advice.
3. There is no need to assess capacity unless patients go against medical advice.
4. Decision‐making capacity is an ‘all‐or‐nothing’ phenomena
ii
ki
i i
‘ ll
hi ’ h
5. Cognitive impairment equals a lack of capacity
6. A lack of capacity is a permanent condition
7. Patients who have not been given relevant and consistent information about their treatment lack capacity.
8. All patients with certain psychiatric disorder lack capacity.
9. Patients who have been involuntarily committed lack capacity.
10. Only mental health experts can assess capacity.
Conclusions
• Capacity vs. Competency
Ethical Considerations
• The foundation of bioethics is based on four core principles: autonomy, beneficence, nonmaleficence, and justice. 12
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Ethical Considerations
Ethical Considerations
• A large percentage of people in ICU’s, nursing homes, and in other situations where end‐of‐life matters are present do not have identifiable family members or surrogate decision makers. How does our decision making process best support them while balancing ethical principles at the end of their lives?
• Surrogate decision making necessitates consideration for the patient’s beliefs (including spiritual/religious), values, past actions, and previously expressed wishes.
• In the absence of advanced directives or substituted judgment, the best‐interest standard is usually applied (broadly defined as what a “reasonable person” would decide in similar situations).
Ethical Considerations
Ethical Considerations
• Determining a hard line between active and passive suicidality can be difficult. Passive suicidal ideation might be based more in existential concerns than pathologic
existential concerns than pathologic depression. To what degree does a provider offer weight to this in consideration of capacity and consideration of end‐of‐life decisions?
• While each of us works diligently to keep the best interests of our patients and clients forefront in our decisional process, we each come with our own set of experiences, values, judgments, and beliefs which are both informative and clouding. How do we use this understanding to make us better providers?
Ethical Considerations
Final Case
88 year old male with history of hypertension, CHF and pulmonary TB status post upper lobectomy. He was admitted dot the hospital after myocardial infarction & underwent a 3 vessel CABG. Postoperative course was complicated by respiratory failure after tracheostomy and renal failure that required temporary hemodialysis. He presented with intermittent altered g y
p
g
g
mental status after surgery. There were some periods of waxing & waning cognition when attempting to wean him from the ventilator. During lucid periods, he made repeated statements, through mouthing and gesturing, that he did not wish to be kept alive by life support.
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Final Case
Final Case
The hospital ethics committee was requested to comment about the patient’s refusal to accept the tube feeding and related capacity issues. As he had refused to consent to lifesaving measures. The patient did not have an advance directive. His family did not want to accept his request to be removed from life support and asked repeatedly for all measures to be taken p
,
y
g
p
to keep him alive. However, they also acknowledged that the patient told them that he would never want to be kept alive on a machine. He had pulled out his tracheostomy and naso‐gastric tubes, both of which had been reinserted against his will. In addition he was observed by the attending medical staff to make a gun‐to‐the‐temple gestures and mouth words that expressed his wish to die. Therefore, a psychiatrist consult was requested to evaluate the patient for suicidal risk as well as his capacity to refuse treatment.
The patient’s sense of hopelessness and suffering related to his potential terminal and painful illness was only able to be assessed indirectly, through gestures, behaviors (pulling out tubes) and his desire for death; which he expressed repeatedly by mouthing the words and gesturing. His life could be maintained with artificial ventilation and feedings. The patient was ,
gg
bedbound, alert and stable. The medical team believed that aggressive intervention was necessary to determine whether he was unable to be weaned from the ventilator. In this case, the patient was kept on life support for further determination of his capacity to refuse treatment and whether he was reversibly depressed. Final Case
Final Case
The patient regarded the life support measures as intrusive and assaultive, however the treatment team continued to believe it was important to assess the transience of symptoms. The evaluating psychiatrist assessed the patient as having some waxing and waning capacity (related to attempts to wean him from the respirator) but generally as being very cognizant, despite his inability p
p y
p
to talk. It was felt the patient had the capacity to understand the implications of removing the tracheostomy and naso‐gastric tubes, had expressed the desire not to have his life prolonged, and had mouthed that he did not want to live in his current painful state.
The psychiatrist also believed that the patient was depressed and viewed his expressed desire to die as suicidal ideation and his removal of the tracheostomy tube as a suicide attempt. Consequently the patient was placed on a psychiatric hold as a danger to self (the courts later upheld the detainment) and the patient was started on anti‐depressant medications. y
,
p
Five months after he was admitted for the myocardial infarction, the patient was still hospitalized, intubated and receiving tube feedings and on anti‐
depressant medications. His family remained adamant in wanting to continue all medical interventions that would keep him alive. His mood was unchanged by medications, and he persisted in requesting that he be removed from the ventilator and tube feedings that he could die. Questions
References
1. Beauchamp TL, Childress JF: Principles of biomedical ethics. 5th edition. New York: Oxford University Press; 2001. 2. Burton CZ, Twamley EW, Lee LC, Palmer BW, Jeste DV, Dunn LB, Irwin SA.
Undetected cognitive impairment and decision‐making capacity in patients
receiving hospice care. American Journal of Geriatric Psychiatry. 2012 Apr;20(4):306‐16. 3. Callaghan S, Ryan CJ. Refusing medical treatment after attempted suicide:
rethinking capacity and coercive treatment in light of the Kerrie Wooltorton
case. Journal of Law and Medicine. 2011 Jun;18(4):811‐9.
4. Edwards D. A philosophical discussion of end‐of‐life decision‐making methods
for incompetent patients. International Journal of Palliative Nursing. 2002 Mar;8(3):146‐51.
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References
References
5. Hanson LC, Danis M, Mutran E, Keenan NL. Impact of patient incompetence on
decisions to use or withhold life‐sustaining treatment. The American Journal of Medicine. 1994
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9. Peisah C, Luxenberg J, Liptzin B, Wand AP, Shulman K, Finkel S. Deathbed
wills: assessing testamentary capacity in the dying patient. Int Psychogeriatr.
2014 Feb;26(2):209‐16.
6. Huffman JC, Stern TA. Capacity Decisions in the General Hospital: When Can You
Refuse to Follow a Person's Wishes? Primary Care Companion Journal of Clinical Psychiatry. 2003
Aug;5(4):177‐181.
10. Soliman S, Hall RC. Forensic issues in medical evaluation: competency and
end‐of‐life issues. Advances in Psychosomatic Medicine. 2015;34:36‐48.
7. Kolva E, Rosenfeld B, Brescia R, Comfort C. Assessing decision‐making capacity
at end of life. General Hospital Psychiatry. 2014 Jul‐Aug;36(4):392‐7.
Kopelman LM. The best interests standard for incompetent or incapacitated
persons of all ages. The Journal of Law, Medicine, and Ethics. 2007 Spring;35(1):187‐96.
8. Lemmens C. End‐of‐life decisions and demented patients. What to do if the
patient's current and past wishes are in conflict with each other? European Journal of Health
Law. 2012 Apr;19(2):177‐86.
11. Tonelli MR. Waking the dying: must we always attempt to involve critically
ill patients in end‐of‐life decisions? Chest. 2005 Feb;127(2):637‐42.
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assessments for older aged, medically ill persons with expressed desire to die. The Journal of the American Academy of Psychiatry and the Law. 2014;42(3):350‐61.
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adults without family. Journal of the American Geriatrics Society. 2012 Nov;60(11):2144‐50.
References
14. Appelbaum PS, Gutheil TG. Clinical Handbook of Psychiatry & the Law; 4th ed. 2007: 179‐
214.
15. Minnesota State Statutes, Chapter 254. Revisor of Statutes, State of Minnesota. 2015.
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