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Case
Ms. F. is a 68-year-old woman who presented to the hospital with sepsis, developed delirium, and stopped eating. Her clinicians recommended a PEG tube. Although she was inconsistently oriented to self, time, and place, she reiterated the same decision across multiple discussions: She did not want the PEG tube. Her replies to what would happen if she didn’t have the procedure and continued not to eat were consistent, too: “I’ll wither away.”
Ms. F. had impaired cognition. Do these impairments mean her clinicians should over-rule her choice? What evidence indicates whether she lacks decision-making capacity? This case of a patient refusing a potentially life-saving procedure amplifies the importance of asking these questions and integrating capacity assessments into clinical care. In this article, we will describe what capacity is, when and how to assess it, and the alternatives when a patient does not have capacity.
The ethical background
Before starting a medical treatment or procedure, a physician must obtain the patient’s informed consent. This is a core ethic of medicine. Informed consent describes the voluntary decision made by a competent patient following the disclosure of necessary information. Informed consent is key to achieving a balance between promoting patient self-determination and protecting vulnerable patients from harm. In most clinical encounters, informed consent unfolds effortlessly. However, in the care of patients who are acutely ill, particularly those in hospitals, fulfilling the ethic can be challenging.
It is important to have skills to recognize and address these challenges. One of the most common challenges to practicing the ethic of informed consent is the impact of illness on a person’s decision-making capacity. A patient who retains capacity ought to make his or her decisions and does not need someone else (a friend or a family member) to help with the decision.
Incapacity is unfortunately common among the acutely ill medical inpatient population, which typically skews older with more comorbidities.1 Impairments frequently are overlooked for a variety of reasons,2-6 including that many hospitalized patients do not challenge their doctors’ decisions. Doctors may be reluctant to assess capacity because the assessment may medically, legally, or ethically complicate the patient’s care.
Two common terms describe the outcome of an assessment of a patient’s decision-making abilities: competency and capacity. Competency describes a legal principle. It is granted or withdrawn by judicial review. The consequences of a judge rescinding competency are severe: A patient would need a guardian to make choices on his or her behalf.
Capacity, on the other hand, is a clinical concept. A physician assesses whether the patient can make a specific decision in a specific context. The difference between the two terms – competency and capacity – delineates what are the consequences of the assessment and which authority, a judge or a physician, has the right to withdraw a person’s decision-making authority.
The judge offers a global assessment that can lead to a guardianship. The physician’s decision is temporal and situational. Patients can lack capacity when they are ill and recover it when they are healed. Capacity is specific to each medical decision that the patient makes and so a person can lack capacity to make some decisions but not others.
Ethical framework to make assessment
Capacity is described by four decisional abilities: 1) communicate a choice, 2) understand relevant information, 3) appreciation, and 4) reasoning.7
Communication of a choice may be verbal or nonverbal, but the patient must be able to indicate the treatment choice clearly and consistently. Understanding describes knowing essential information a physician has conveyed. This is assessed by having the patients say back what they were told, such as: “Can you tell me in your own words what is a PEG tube?”
The components of appreciation are: the diagnosis or disorder and the benefits and risks of the proposed intervention as it relates to the diagnosis or disorder. Patients who appreciate their disorder have insight into their condition: “I’m not eating because I have an infection.” This can be assessed with a question such as: “Can you tell me in your own words what are the risks or downsides to you?” This prompt assesses the patient’s appreciation of risk. Reframing the question to ask, “Can you tell me about the upsides of this intervention?” will assess the patient’s appreciation of benefit.
Reasoning assesses the thought process and rationale for a person’s decision. It has two components – comparative and consequential reasoning. The first compares the different choices presented about the proposed intervention: “How does having a PEG tube compare to not having it?” The second asks about the consequences of each choice: “What might happen to a person who has the PEG tube?”
The capacity assessment evaluates a patient's performance on these decision-making abilities. This informs the clinician’s judgment of whether the patient has the capacity to make a decision. A patient who has capacity makes the choice, regardless of the physician’s preference or recommendation.
The physician’s duty is to decide which decision-making abilities to assess. Choice and understanding are essential. In riskier or more consequential decisions, a physician may raise the rigor of the assessment to include appreciation and reasoning.8 It is common practice for physicians to raise the standard for when to evaluate and how extensive their evaluation is when the decision is life-altering, as with a PEG tube versus a more routine, non–life-altering decision such as drawing blood for a routine wellness visit.
A simple scoring rubric determines the patient’s ability to answer each question along a range from adequate = 2, marginal = 1, to inadequate = 0. The extremes or adequate or inadequate are straightforward. Judgment is needed when performance is marginal. In the case of repeated marginal answers, a physician must strongly consider whether the patient lacks capacity to make the decision in question.9
Who receives a capacity assessment and when?
A good doctor is a good teacher. A doctor should therefore check that patients understand what is happening with their health. Assessing understanding is simply good medicine; for example, a good teacher ought to be asking an unimpaired patient without impaired cognition, “Can you say back to me the key points of what I explained?” With this approach, every patient is effectively “screened” for a capacity impairment.
Certain patients ought to trigger a more thorough examination of decisional abilities. Across multiple articles, the strongest factors associated with incapacity are older age and diminished cognitive function (often detected by MMSE scores below the low 20s).1,7,10 Other factors that may amplify these deficits and thus should raise clinician concern would be patients with brain diseases such as Alzheimer’s or Parkinson’s, persons with lower education levels, or those who already have someone who helps them make decisions. To be sure, many older adults, even those with cognitive impairments, retain capacity, but extra protection should be in place to ensure their well-being.
Consequences of incapacity
If a careful assessment shows a patient has sound decision-making abilities, the patient is free to make the choice. On the other hand, a person does not have the capacity to make the decision at hand if he or she cannot communicate a choice or understand relevant information. Whether appreciation or reasoning ought to be assessed depends on the complexity and the significance of the decision. An assessment of decisional ability is not the end of the decision-making process. The goal is to maximize the patient’s autonomy.
Capacity can change over time. Factors that may inhibit capacity, such as medications, time of day, and even illness acuity, need to be accounted for and, if possible, addressed. The decision ought to be delayed, if possible, to a time when the patient has better chances of having capacity. If it is unlikely that patients’ status will change in the time frame needed to make the choice and they are found to not have capacity, then the decision making can be aided by advance directives or substitute decision makers such as family members or legal guardians.
Revisiting the case
Ms. F., who was delirious, retained notable decisional abilities. She understood the procedure of receiving the PEG tube and how the risk of continuing to not eat and not receive the PEG would result in dying by starvation. She appreciated her own diagnosis and how the proposed intervention could alter her condition. She appreciated how not having a PEG would lead to her death. Her choice to refuse the procedure was consistent. Ms. F. showed she retained capacity to make this decision. It was the physician’s duty to respect her autonomy and so to respect her refusal of the PEG.
Dr. Ney is a physician resident, department of psychiatry and human behavior, Thomas Jefferson University Hospital, Philadelphia. He has no conflicts to disclose. Dr. Karlawish is a professor in the departments of medicine, medical ethics and health policy, and neurology, University of Pennsylvania, Philadelphia. He is a site investigator for clinical trials sponsored by Biogen, Eisai, and Lilly.
References
1. Raymont V et al. Prevalence of mental incapacity in medical inpatients and associated risk factors: Cross-sectional study. Lancet. 2004;364(9443):1421-7. doi: 10.1016/S0140-6736(04)17224-3.
2. Hanson M and Pitt D. Informed consent for surgery: risk discussion and documentation. Can J Surg. 2017;60(1):69-70. doi: 10.1503/cjs.004816.
3. Dahlberg J et al. Lack of informed consent for surgical procedures by elderly patients with inability to consent: A retrospective chart review from an academic medical center in Norway. Patient Saf Surg. 2019;13:24. doi: 10.1186/s13037-019-0205-5.
4. Sessums LL et al. Does this patient have medical decision-making capacity? JAMA. 2011;306(4):420-7. doi: 10.1001/jama.2011.1023.
5. Terranova C et al. Ethical and medicolegal implications of capacity of patients in geriatric surgery. Med Sci Law. 2013;53(3):166-71. doi: 10.1177/0025802412473963.
6. John S et al. Assessing patients decision-making capacity in the hospital setting: A literature review. Aust J Rural Health. 2020;28(2):141-8. doi: 10.1111/ajr.12592.
7. Kim SYH et al. Do clinicians follow a risk-sensitive model of capacity-determination? An experimental video survey. Psychosomatics. 2006;47(4):325-9. doi: 10.1176/appi.psy.47.4.325.
8. Appelbaum PS. Assessment of patients’ competence to consent to treatment. N Engl J Med. 2007;357(18):1834-40. doi: 10.1056/NEJMcp074045.
9. Karlawish J. Measuring decision-making capacity in cognitively impaired individuals. Neurosignals. 2008;16(1):91-8. doi: 10.1159/000109763.
10. Christensen K et al. Decision-making capacity for informed consent in the older population. Bull Am Acad Psychiatry Law. 1995;23(3):353-65.
Case
Ms. F. is a 68-year-old woman who presented to the hospital with sepsis, developed delirium, and stopped eating. Her clinicians recommended a PEG tube. Although she was inconsistently oriented to self, time, and place, she reiterated the same decision across multiple discussions: She did not want the PEG tube. Her replies to what would happen if she didn’t have the procedure and continued not to eat were consistent, too: “I’ll wither away.”
Ms. F. had impaired cognition. Do these impairments mean her clinicians should over-rule her choice? What evidence indicates whether she lacks decision-making capacity? This case of a patient refusing a potentially life-saving procedure amplifies the importance of asking these questions and integrating capacity assessments into clinical care. In this article, we will describe what capacity is, when and how to assess it, and the alternatives when a patient does not have capacity.
The ethical background
Before starting a medical treatment or procedure, a physician must obtain the patient’s informed consent. This is a core ethic of medicine. Informed consent describes the voluntary decision made by a competent patient following the disclosure of necessary information. Informed consent is key to achieving a balance between promoting patient self-determination and protecting vulnerable patients from harm. In most clinical encounters, informed consent unfolds effortlessly. However, in the care of patients who are acutely ill, particularly those in hospitals, fulfilling the ethic can be challenging.
It is important to have skills to recognize and address these challenges. One of the most common challenges to practicing the ethic of informed consent is the impact of illness on a person’s decision-making capacity. A patient who retains capacity ought to make his or her decisions and does not need someone else (a friend or a family member) to help with the decision.
Incapacity is unfortunately common among the acutely ill medical inpatient population, which typically skews older with more comorbidities.1 Impairments frequently are overlooked for a variety of reasons,2-6 including that many hospitalized patients do not challenge their doctors’ decisions. Doctors may be reluctant to assess capacity because the assessment may medically, legally, or ethically complicate the patient’s care.
Two common terms describe the outcome of an assessment of a patient’s decision-making abilities: competency and capacity. Competency describes a legal principle. It is granted or withdrawn by judicial review. The consequences of a judge rescinding competency are severe: A patient would need a guardian to make choices on his or her behalf.
Capacity, on the other hand, is a clinical concept. A physician assesses whether the patient can make a specific decision in a specific context. The difference between the two terms – competency and capacity – delineates what are the consequences of the assessment and which authority, a judge or a physician, has the right to withdraw a person’s decision-making authority.
The judge offers a global assessment that can lead to a guardianship. The physician’s decision is temporal and situational. Patients can lack capacity when they are ill and recover it when they are healed. Capacity is specific to each medical decision that the patient makes and so a person can lack capacity to make some decisions but not others.
Ethical framework to make assessment
Capacity is described by four decisional abilities: 1) communicate a choice, 2) understand relevant information, 3) appreciation, and 4) reasoning.7
Communication of a choice may be verbal or nonverbal, but the patient must be able to indicate the treatment choice clearly and consistently. Understanding describes knowing essential information a physician has conveyed. This is assessed by having the patients say back what they were told, such as: “Can you tell me in your own words what is a PEG tube?”
The components of appreciation are: the diagnosis or disorder and the benefits and risks of the proposed intervention as it relates to the diagnosis or disorder. Patients who appreciate their disorder have insight into their condition: “I’m not eating because I have an infection.” This can be assessed with a question such as: “Can you tell me in your own words what are the risks or downsides to you?” This prompt assesses the patient’s appreciation of risk. Reframing the question to ask, “Can you tell me about the upsides of this intervention?” will assess the patient’s appreciation of benefit.
Reasoning assesses the thought process and rationale for a person’s decision. It has two components – comparative and consequential reasoning. The first compares the different choices presented about the proposed intervention: “How does having a PEG tube compare to not having it?” The second asks about the consequences of each choice: “What might happen to a person who has the PEG tube?”
The capacity assessment evaluates a patient's performance on these decision-making abilities. This informs the clinician’s judgment of whether the patient has the capacity to make a decision. A patient who has capacity makes the choice, regardless of the physician’s preference or recommendation.
The physician’s duty is to decide which decision-making abilities to assess. Choice and understanding are essential. In riskier or more consequential decisions, a physician may raise the rigor of the assessment to include appreciation and reasoning.8 It is common practice for physicians to raise the standard for when to evaluate and how extensive their evaluation is when the decision is life-altering, as with a PEG tube versus a more routine, non–life-altering decision such as drawing blood for a routine wellness visit.
A simple scoring rubric determines the patient’s ability to answer each question along a range from adequate = 2, marginal = 1, to inadequate = 0. The extremes or adequate or inadequate are straightforward. Judgment is needed when performance is marginal. In the case of repeated marginal answers, a physician must strongly consider whether the patient lacks capacity to make the decision in question.9
Who receives a capacity assessment and when?
A good doctor is a good teacher. A doctor should therefore check that patients understand what is happening with their health. Assessing understanding is simply good medicine; for example, a good teacher ought to be asking an unimpaired patient without impaired cognition, “Can you say back to me the key points of what I explained?” With this approach, every patient is effectively “screened” for a capacity impairment.
Certain patients ought to trigger a more thorough examination of decisional abilities. Across multiple articles, the strongest factors associated with incapacity are older age and diminished cognitive function (often detected by MMSE scores below the low 20s).1,7,10 Other factors that may amplify these deficits and thus should raise clinician concern would be patients with brain diseases such as Alzheimer’s or Parkinson’s, persons with lower education levels, or those who already have someone who helps them make decisions. To be sure, many older adults, even those with cognitive impairments, retain capacity, but extra protection should be in place to ensure their well-being.
Consequences of incapacity
If a careful assessment shows a patient has sound decision-making abilities, the patient is free to make the choice. On the other hand, a person does not have the capacity to make the decision at hand if he or she cannot communicate a choice or understand relevant information. Whether appreciation or reasoning ought to be assessed depends on the complexity and the significance of the decision. An assessment of decisional ability is not the end of the decision-making process. The goal is to maximize the patient’s autonomy.
Capacity can change over time. Factors that may inhibit capacity, such as medications, time of day, and even illness acuity, need to be accounted for and, if possible, addressed. The decision ought to be delayed, if possible, to a time when the patient has better chances of having capacity. If it is unlikely that patients’ status will change in the time frame needed to make the choice and they are found to not have capacity, then the decision making can be aided by advance directives or substitute decision makers such as family members or legal guardians.
Revisiting the case
Ms. F., who was delirious, retained notable decisional abilities. She understood the procedure of receiving the PEG tube and how the risk of continuing to not eat and not receive the PEG would result in dying by starvation. She appreciated her own diagnosis and how the proposed intervention could alter her condition. She appreciated how not having a PEG would lead to her death. Her choice to refuse the procedure was consistent. Ms. F. showed she retained capacity to make this decision. It was the physician’s duty to respect her autonomy and so to respect her refusal of the PEG.
Dr. Ney is a physician resident, department of psychiatry and human behavior, Thomas Jefferson University Hospital, Philadelphia. He has no conflicts to disclose. Dr. Karlawish is a professor in the departments of medicine, medical ethics and health policy, and neurology, University of Pennsylvania, Philadelphia. He is a site investigator for clinical trials sponsored by Biogen, Eisai, and Lilly.
References
1. Raymont V et al. Prevalence of mental incapacity in medical inpatients and associated risk factors: Cross-sectional study. Lancet. 2004;364(9443):1421-7. doi: 10.1016/S0140-6736(04)17224-3.
2. Hanson M and Pitt D. Informed consent for surgery: risk discussion and documentation. Can J Surg. 2017;60(1):69-70. doi: 10.1503/cjs.004816.
3. Dahlberg J et al. Lack of informed consent for surgical procedures by elderly patients with inability to consent: A retrospective chart review from an academic medical center in Norway. Patient Saf Surg. 2019;13:24. doi: 10.1186/s13037-019-0205-5.
4. Sessums LL et al. Does this patient have medical decision-making capacity? JAMA. 2011;306(4):420-7. doi: 10.1001/jama.2011.1023.
5. Terranova C et al. Ethical and medicolegal implications of capacity of patients in geriatric surgery. Med Sci Law. 2013;53(3):166-71. doi: 10.1177/0025802412473963.
6. John S et al. Assessing patients decision-making capacity in the hospital setting: A literature review. Aust J Rural Health. 2020;28(2):141-8. doi: 10.1111/ajr.12592.
7. Kim SYH et al. Do clinicians follow a risk-sensitive model of capacity-determination? An experimental video survey. Psychosomatics. 2006;47(4):325-9. doi: 10.1176/appi.psy.47.4.325.
8. Appelbaum PS. Assessment of patients’ competence to consent to treatment. N Engl J Med. 2007;357(18):1834-40. doi: 10.1056/NEJMcp074045.
9. Karlawish J. Measuring decision-making capacity in cognitively impaired individuals. Neurosignals. 2008;16(1):91-8. doi: 10.1159/000109763.
10. Christensen K et al. Decision-making capacity for informed consent in the older population. Bull Am Acad Psychiatry Law. 1995;23(3):353-65.
Case
Ms. F. is a 68-year-old woman who presented to the hospital with sepsis, developed delirium, and stopped eating. Her clinicians recommended a PEG tube. Although she was inconsistently oriented to self, time, and place, she reiterated the same decision across multiple discussions: She did not want the PEG tube. Her replies to what would happen if she didn’t have the procedure and continued not to eat were consistent, too: “I’ll wither away.”
Ms. F. had impaired cognition. Do these impairments mean her clinicians should over-rule her choice? What evidence indicates whether she lacks decision-making capacity? This case of a patient refusing a potentially life-saving procedure amplifies the importance of asking these questions and integrating capacity assessments into clinical care. In this article, we will describe what capacity is, when and how to assess it, and the alternatives when a patient does not have capacity.
The ethical background
Before starting a medical treatment or procedure, a physician must obtain the patient’s informed consent. This is a core ethic of medicine. Informed consent describes the voluntary decision made by a competent patient following the disclosure of necessary information. Informed consent is key to achieving a balance between promoting patient self-determination and protecting vulnerable patients from harm. In most clinical encounters, informed consent unfolds effortlessly. However, in the care of patients who are acutely ill, particularly those in hospitals, fulfilling the ethic can be challenging.
It is important to have skills to recognize and address these challenges. One of the most common challenges to practicing the ethic of informed consent is the impact of illness on a person’s decision-making capacity. A patient who retains capacity ought to make his or her decisions and does not need someone else (a friend or a family member) to help with the decision.
Incapacity is unfortunately common among the acutely ill medical inpatient population, which typically skews older with more comorbidities.1 Impairments frequently are overlooked for a variety of reasons,2-6 including that many hospitalized patients do not challenge their doctors’ decisions. Doctors may be reluctant to assess capacity because the assessment may medically, legally, or ethically complicate the patient’s care.
Two common terms describe the outcome of an assessment of a patient’s decision-making abilities: competency and capacity. Competency describes a legal principle. It is granted or withdrawn by judicial review. The consequences of a judge rescinding competency are severe: A patient would need a guardian to make choices on his or her behalf.
Capacity, on the other hand, is a clinical concept. A physician assesses whether the patient can make a specific decision in a specific context. The difference between the two terms – competency and capacity – delineates what are the consequences of the assessment and which authority, a judge or a physician, has the right to withdraw a person’s decision-making authority.
The judge offers a global assessment that can lead to a guardianship. The physician’s decision is temporal and situational. Patients can lack capacity when they are ill and recover it when they are healed. Capacity is specific to each medical decision that the patient makes and so a person can lack capacity to make some decisions but not others.
Ethical framework to make assessment
Capacity is described by four decisional abilities: 1) communicate a choice, 2) understand relevant information, 3) appreciation, and 4) reasoning.7
Communication of a choice may be verbal or nonverbal, but the patient must be able to indicate the treatment choice clearly and consistently. Understanding describes knowing essential information a physician has conveyed. This is assessed by having the patients say back what they were told, such as: “Can you tell me in your own words what is a PEG tube?”
The components of appreciation are: the diagnosis or disorder and the benefits and risks of the proposed intervention as it relates to the diagnosis or disorder. Patients who appreciate their disorder have insight into their condition: “I’m not eating because I have an infection.” This can be assessed with a question such as: “Can you tell me in your own words what are the risks or downsides to you?” This prompt assesses the patient’s appreciation of risk. Reframing the question to ask, “Can you tell me about the upsides of this intervention?” will assess the patient’s appreciation of benefit.
Reasoning assesses the thought process and rationale for a person’s decision. It has two components – comparative and consequential reasoning. The first compares the different choices presented about the proposed intervention: “How does having a PEG tube compare to not having it?” The second asks about the consequences of each choice: “What might happen to a person who has the PEG tube?”
The capacity assessment evaluates a patient's performance on these decision-making abilities. This informs the clinician’s judgment of whether the patient has the capacity to make a decision. A patient who has capacity makes the choice, regardless of the physician’s preference or recommendation.
The physician’s duty is to decide which decision-making abilities to assess. Choice and understanding are essential. In riskier or more consequential decisions, a physician may raise the rigor of the assessment to include appreciation and reasoning.8 It is common practice for physicians to raise the standard for when to evaluate and how extensive their evaluation is when the decision is life-altering, as with a PEG tube versus a more routine, non–life-altering decision such as drawing blood for a routine wellness visit.
A simple scoring rubric determines the patient’s ability to answer each question along a range from adequate = 2, marginal = 1, to inadequate = 0. The extremes or adequate or inadequate are straightforward. Judgment is needed when performance is marginal. In the case of repeated marginal answers, a physician must strongly consider whether the patient lacks capacity to make the decision in question.9
Who receives a capacity assessment and when?
A good doctor is a good teacher. A doctor should therefore check that patients understand what is happening with their health. Assessing understanding is simply good medicine; for example, a good teacher ought to be asking an unimpaired patient without impaired cognition, “Can you say back to me the key points of what I explained?” With this approach, every patient is effectively “screened” for a capacity impairment.
Certain patients ought to trigger a more thorough examination of decisional abilities. Across multiple articles, the strongest factors associated with incapacity are older age and diminished cognitive function (often detected by MMSE scores below the low 20s).1,7,10 Other factors that may amplify these deficits and thus should raise clinician concern would be patients with brain diseases such as Alzheimer’s or Parkinson’s, persons with lower education levels, or those who already have someone who helps them make decisions. To be sure, many older adults, even those with cognitive impairments, retain capacity, but extra protection should be in place to ensure their well-being.
Consequences of incapacity
If a careful assessment shows a patient has sound decision-making abilities, the patient is free to make the choice. On the other hand, a person does not have the capacity to make the decision at hand if he or she cannot communicate a choice or understand relevant information. Whether appreciation or reasoning ought to be assessed depends on the complexity and the significance of the decision. An assessment of decisional ability is not the end of the decision-making process. The goal is to maximize the patient’s autonomy.
Capacity can change over time. Factors that may inhibit capacity, such as medications, time of day, and even illness acuity, need to be accounted for and, if possible, addressed. The decision ought to be delayed, if possible, to a time when the patient has better chances of having capacity. If it is unlikely that patients’ status will change in the time frame needed to make the choice and they are found to not have capacity, then the decision making can be aided by advance directives or substitute decision makers such as family members or legal guardians.
Revisiting the case
Ms. F., who was delirious, retained notable decisional abilities. She understood the procedure of receiving the PEG tube and how the risk of continuing to not eat and not receive the PEG would result in dying by starvation. She appreciated her own diagnosis and how the proposed intervention could alter her condition. She appreciated how not having a PEG would lead to her death. Her choice to refuse the procedure was consistent. Ms. F. showed she retained capacity to make this decision. It was the physician’s duty to respect her autonomy and so to respect her refusal of the PEG.
Dr. Ney is a physician resident, department of psychiatry and human behavior, Thomas Jefferson University Hospital, Philadelphia. He has no conflicts to disclose. Dr. Karlawish is a professor in the departments of medicine, medical ethics and health policy, and neurology, University of Pennsylvania, Philadelphia. He is a site investigator for clinical trials sponsored by Biogen, Eisai, and Lilly.
References
1. Raymont V et al. Prevalence of mental incapacity in medical inpatients and associated risk factors: Cross-sectional study. Lancet. 2004;364(9443):1421-7. doi: 10.1016/S0140-6736(04)17224-3.
2. Hanson M and Pitt D. Informed consent for surgery: risk discussion and documentation. Can J Surg. 2017;60(1):69-70. doi: 10.1503/cjs.004816.
3. Dahlberg J et al. Lack of informed consent for surgical procedures by elderly patients with inability to consent: A retrospective chart review from an academic medical center in Norway. Patient Saf Surg. 2019;13:24. doi: 10.1186/s13037-019-0205-5.
4. Sessums LL et al. Does this patient have medical decision-making capacity? JAMA. 2011;306(4):420-7. doi: 10.1001/jama.2011.1023.
5. Terranova C et al. Ethical and medicolegal implications of capacity of patients in geriatric surgery. Med Sci Law. 2013;53(3):166-71. doi: 10.1177/0025802412473963.
6. John S et al. Assessing patients decision-making capacity in the hospital setting: A literature review. Aust J Rural Health. 2020;28(2):141-8. doi: 10.1111/ajr.12592.
7. Kim SYH et al. Do clinicians follow a risk-sensitive model of capacity-determination? An experimental video survey. Psychosomatics. 2006;47(4):325-9. doi: 10.1176/appi.psy.47.4.325.
8. Appelbaum PS. Assessment of patients’ competence to consent to treatment. N Engl J Med. 2007;357(18):1834-40. doi: 10.1056/NEJMcp074045.
9. Karlawish J. Measuring decision-making capacity in cognitively impaired individuals. Neurosignals. 2008;16(1):91-8. doi: 10.1159/000109763.
10. Christensen K et al. Decision-making capacity for informed consent in the older population. Bull Am Acad Psychiatry Law. 1995;23(3):353-65.
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<root generator="drupal.xsl" gversion="1.7"> <header> <fileName>159783</fileName> <TBEID>0C044F89.SIG</TBEID> <TBUniqueIdentifier>MD_0C044F89</TBUniqueIdentifier> <newsOrJournal>News</newsOrJournal> <publisherName>Frontline Medical Communications</publisherName> <storyname/> <articleType>2</articleType> <TBLocation>Hold-GIHOLD</TBLocation> <QCDate>20220901T125223</QCDate> <firstPublished>20220902T142607</firstPublished> <LastPublished>20220902T142608</LastPublished> <pubStatus qcode="stat:"/> <embargoDate/> <killDate/> <CMSDate>20220902T142607</CMSDate> <articleSource/> <facebookInfo/> <meetingNumber/> <byline>Ney and Karlawish</byline> <bylineText>DAVID NEY, MD, AND JASON KARLAWISH, MD</bylineText> <bylineFull>DAVID NEY, MD, AND JASON KARLAWISH, MD</bylineFull> <bylineTitleText/> <USOrGlobal/> <wireDocType/> <newsDocType/> <journalDocType/> <linkLabel/> <pageRange/> <citation/> <quizID/> <indexIssueDate/> <itemClass qcode="ninat:text"/> <provider qcode="provider:imng"> <name>IMNG Medical Media</name> <rightsInfo> <copyrightHolder> <name>Frontline Medical News</name> </copyrightHolder> <copyrightNotice>Copyright (c) 2015 Frontline Medical News, a Frontline Medical Communications Inc. company. All rights reserved. This material may not be published, broadcast, copied, or otherwise reproduced or distributed without the prior written permission of Frontline Medical Communications Inc.</copyrightNotice> </rightsInfo> </provider> <abstract/> <metaDescription>Ms. F. is a 68-year-old woman who presented to the hospital with sepsis, developed delirium, and stopped eating. Her clinicians recommended a PEG tube. Although</metaDescription> <articlePDF/> <teaserImage>289183</teaserImage> <teaser>In the care of patients who are acutely ill, particularly those in hospitals, fulfilling the ethic of informed consent can be challenging.</teaser> <title>A case for when, how, and why to evaluate capacity</title> <deck/> <disclaimer/> <AuthorList/> <articleURL/> <doi/> <pubMedID/> <publishXMLStatus/> <publishXMLVersion>1</publishXMLVersion> <useEISSN>0</useEISSN> <urgency/> <pubPubdateYear/> <pubPubdateMonth/> <pubPubdateDay/> <pubVolume/> <pubNumber/> <wireChannels/> <primaryCMSID/> <CMSIDs/> <keywords/> <seeAlsos/> <publications_g> <publicationData> <publicationCode>gih</publicationCode> <pubIssueName/> <pubArticleType/> <pubTopics/> <pubCategories/> <pubSections/> </publicationData> </publications_g> <publications> <term canonical="true">17</term> </publications> <sections> <term>46646</term> <term canonical="true">63953</term> </sections> <topics> <term canonical="true">278</term> </topics> <links> <link> <itemClass qcode="ninat:picture"/> <altRep contenttype="image/jpeg">images/240111db.jpg</altRep> <description role="drol:caption">Dr. David Ney</description> <description role="drol:credit"/> </link> <link> <itemClass qcode="ninat:picture"/> <altRep contenttype="image/jpeg">images/240111da.jpg</altRep> <description role="drol:caption">Dr. Jason Karlawish</description> <description role="drol:credit"/> </link> </links> </header> <itemSet> <newsItem> <itemMeta> <itemRole>Main</itemRole> <itemClass>text</itemClass> <title>A case for when, how, and why to evaluate capacity</title> <deck/> </itemMeta> <itemContent> <h2>Case</h2> <p>Ms. F. is a 68-year-old woman who presented to the hospital with sepsis, developed delirium, and stopped eating. Her clinicians recommended a PEG tube. Although she was inconsistently oriented to self, time, and place, she reiterated the same decision across multiple discussions: She did not want the PEG tube. Her replies to what would happen if she didn’t have the procedure and continued not to eat were consistent, too: “I’ll wither away.”<br/><br/>Ms. F. had impaired cognition. Do these impairments mean her clinicians should over-rule her choice? What evidence indicates whether she lacks decision-making capacity? This case of a patient refusing a potentially life-saving procedure amplifies the importance of asking these questions and integrating capacity assessments into clinical care. In this article, we will describe what capacity is, when and how to assess it, and the alternatives when a patient does not have capacity.<br/><br/></p> <h2>The ethical background</h2> <p>Before starting a medical treatment or procedure, a physician must obtain the patient’s informed consent. This is a core ethic of medicine. Informed consent describes the voluntary decision made by a competent patient following the disclosure of necessary information. Informed consent is key to achieving a balance between promoting patient self-determination and protecting vulnerable patients from harm. In most clinical encounters, informed consent unfolds effortlessly. However, in the care of patients who are acutely ill, particularly those in hospitals, fulfilling the ethic can be challenging. </p> <p>[[{"fid":"289183","view_mode":"medstat_image_flush_left","fields":{"format":"medstat_image_flush_left","field_file_image_alt_text[und][0][value]":"Dr. David Ney, Thomas Jefferson University Hospital, Philadelphia","field_file_image_credit[und][0][value]":"","field_file_image_caption[und][0][value]":"Dr. David Ney"},"type":"media","attributes":{"class":"media-element file-medstat_image_flush_left"}}]]It is important to have skills to recognize and address these challenges. One of the most common challenges to practicing the ethic of informed consent is the impact of illness on a person’s decision-making capacity. A patient who retains capacity ought to make his or her decisions and does not need someone else (a friend or a family member) to help with the decision. <br/><br/>Incapacity is unfortunately common among the acutely ill medical inpatient population, which typically skews older with more comorbidities.<sup>1</sup> Impairments frequently are overlooked for a variety of reasons,<sup>2-6</sup> including that many hospitalized patients do not challenge their doctors’ decisions. Doctors may be reluctant to assess capacity because the assessment may medically, legally, or ethically complicate the patient’s care.<br/><br/>Two common terms describe the outcome of an assessment of a patient’s decision-making abilities: competency and capacity. Competency describes a legal principle. It is granted or withdrawn by judicial review. The consequences of a judge rescinding competency are severe: A patient would need a guardian to make choices on his or her behalf. <br/><br/>[[{"fid":"289182","view_mode":"medstat_image_flush_right","fields":{"format":"medstat_image_flush_right","field_file_image_alt_text[und][0][value]":"Dr. Jason Karlawish, University of Pennsylvania, Philadelphia","field_file_image_credit[und][0][value]":"","field_file_image_caption[und][0][value]":"Dr. Jason Karlawish"},"type":"media","attributes":{"class":"media-element file-medstat_image_flush_right"}}]]Capacity, on the other hand, is a clinical concept. A physician assesses whether the patient can make a specific decision in a specific context. The difference between the two terms – competency and capacity – delineates what are the consequences of the assessment and which authority, a judge or a physician, has the right to withdraw a person’s decision-making authority.<br/><br/>The judge offers a global assessment that can lead to a guardianship. The physician’s decision is temporal and situational. Patients can lack capacity when they are ill and recover it when they are healed. Capacity is specific to each medical decision that the patient makes and so a person can lack capacity to make some decisions but not others.<br/><br/></p> <h2>Ethical framework to make assessment</h2> <p>Capacity is described by four decisional abilities: 1) communicate a choice, 2) understand relevant information, 3) appreciation, and 4) reasoning.<sup>7 </sup></p> <p>Communication of a choice may be verbal or nonverbal, but the patient must be able to indicate the treatment choice clearly and consistently. Understanding describes knowing essential information a physician has conveyed. This is assessed by having the patients say back what they were told, such as: “Can you tell me in your own words what is a PEG tube?” <br/><br/>The components of appreciation are: the diagnosis or disorder and the benefits and risks of the proposed intervention as it relates to the diagnosis or disorder. Patients who appreciates their disorder have insight into their condition: “I’m not eating because I have an infection.” This can be assessed with a question such as: “Can you tell me in your own words what are the risks or downsides to you?” This prompt assesses the patient’s appreciation of risk. Reframing the question to ask, “Can you tell me about the upsides of this intervention?” will assess the patient’s appreciation of benefit.<br/><br/>Reasoning assesses thought process and rationale for a person’s decision. It has two components – comparative and consequential reasoning. The first compares the different choices presented about the proposed intervention: “How does having a PEG tube compare to not having it?” The second asks about the consequences of each choice: “What might happen to a person who has the PEG tube?”<br/><br/>The capacity assessment evaluates a patient performance on these decision-making abilities. This informs the clinician’s judgment of whether the patient has the capacity to make a decision. A patient who has capacity makes the choice, regardless of the physician’s preference or recommendation. <br/><br/>The physician’s duty is to decide which decision-making abilities to assess. Choice and understanding are essential. In riskier or more consequential decisions, a physician may raise the rigor of the assessment to include appreciation and reasoning.<sup>8</sup> It is common practice for physicians to raise the standard for when to evaluate and how extensive their evaluation is when the decision is life-altering, as with a PEG tube versus a more routine, non–life-altering decision such as drawing blood for a routine wellness visit.<br/><br/>A simple scoring rubric determines the patient’s ability to answer each question along a range from adequate = 2, marginal = 1, to inadequate = 0. The extremes or adequate or inadequate are straightforward. Judgment is needed when performance is marginal. In the case of repeated marginal answers, a physician must strongly consider whether the patient lacks capacity to make the decision in question.<sup>9</sup></p> <h2>Who receives a capacity assessment and when?</h2> <p>A good doctor is a good teacher. A doctor should therefore check that patients understand what is happening with their health. Assessing understanding is simply good medicine; for example, a good teacher ought to be asking an unimpaired patient without impaired cognition, “Can you say back to me the key points of what I explained?” With this approach, every patient is effectively “screened” for a capacity impairment. </p> <p>Certain patients ought to trigger a more thorough examination of decisional abilities. Across multiple articles, the strongest factors associated with incapacity are older age and diminished cognitive function (often detected by MMSE scores below the low 20s).<sup>1,7,10</sup> Other factors that may amplify these deficits and thus should raise clinician concern would be patients with brain diseases such as Alzheimer’s or Parkinson’s, persons with lower education levels, or those who already have someone who helps them make decisions. To be sure, many older adults, even those with cognitive impairments, retain capacity, but extra protection should be in place to ensure their well-being.<br/><br/></p> <h2>Consequences of incapacity </h2> <p>If a careful assessment shows a patient has sound decision-making abilities, the patient is free to make the choice. On the other hand, a person does not have the capacity to make the decision at hand if he or she cannot communicate a choice or understand relevant information. Whether appreciation or reasoning ought to be assessed depends on the complexity and the significance of the decision. An assessment of decisional ability is not the end of the decision-making process. The goal is to maximize the patient’s autonomy. </p> <p>Capacity can change over time. Factors that may inhibit capacity, such as medications, time of day, and even illness acuity, need to be accounted for and, if possible, addressed. The decision ought to be delayed, if possible, to a time when the patient has better chances of having capacity. If it is unlikely that patients’ status will change in the time frame needed to make the choice and they are found to not have capacity, then the decision making can be aided by advance directives or substitute decision makers such as family members or legal guardians.<br/><br/></p> <h2>Revisiting the case</h2> <p>Ms. F., who was delirious, retained notable decisional abilities. She understood the procedure of receiving the PEG tube and how the risk of continuing to not eat and not receive the PEG would result in dying by starvation. She appreciated her own diagnosis and how the proposed intervention could alter her condition. She appreciated how not having a PEG would lead to her death. Her choice to refuse the procedure was consistent. Ms. F. showed she retained capacity to make this decision. It was the physician’s duty to respect her autonomy and so to respect her refusal of the PEG.</p> <p> <em>Dr. Ney is a physician resident, department of psychiatry and human behavior, Thomas Jefferson University Hospital, Philadelphia. He has no conflicts to disclose. Dr. Karlawish is a professor in the departments of medicine, medical ethics and health policy, and neurology, University of Pennsylvania, Philadelphia. He is a site investigator for clinical trials sponsored by Biogen, Eisai, and Lilly. </em> </p> <h2>References</h2> <p>1. Raymont V et al. Prevalence of mental incapacity in medical inpatients and associated risk factors: Cross-sectional study. Lancet. 2004;364(9443):1421-7. doi: <span class="Hyperlink"><a href="https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(04)17224-3/fulltext">10.1016/S0140-6736(04)17224-3</a></span>.<br/><br/>2. Hanson M and Pitt D. Informed consent for surgery: risk discussion and documentation. Can J Surg. 2017;60(1):69-70. doi: <span class="Hyperlink"><a href="https://www.canjsurg.ca/content/60/1/69">10.1503/cjs.004816</a></span>.<br/><br/>3. Dahlberg J et al. Lack of informed consent for surgical procedures by elderly patients with inability to consent: A retrospective chart review from an academic medical center in Norway. Patient Saf Surg. 2019;13:24. doi: <span class="Hyperlink"><a href="https://pssjournal.biomedcentral.com/articles/10.1186/s13037-019-0205-5">10.1186/s13037-019-0205-5</a></span>.<br/><br/>4. Sessums LL et al. Does this patient have medical decision-making capacity? JAMA. 2011;306(4):420-7. doi: <span class="Hyperlink"><a href="https://jamanetwork.com/journals/jama/article-abstract/1104154">10.1001/jama.2011.1023</a></span>.<br/><br/>5. Terranova C et al. Ethical and medicolegal implications of capacity of patients in geriatric surgery. Med Sci Law. 2013;53(3):166-71. doi: <span class="Hyperlink"><a href="https://journals.sagepub.com/doi/10.1177/0025802412473963">10.1177/0025802412473963</a></span>.<br/><br/>6. John S et al. Assessing patients decision-making capacity in the hospital setting: A literature review. Aust J Rural Health. 2020;28(2):141-8. doi: <span class="Hyperlink"><a href="https://onlinelibrary.wiley.com/doi/10.1111/ajr.12592">10.1111/ajr.12592</a></span>.<br/><br/>7. Kim SYH et al. Do clinicians follow a risk-sensitive model of capacity-determination? An experimental video survey. Psychosomatics. 2006;47(4):325-9. doi: <span class="Hyperlink"><a href="https://www.sciencedirect.com/science/article/pii/S0033318206711380?via%3Dihub">10.1176/appi.psy.47.4.325</a></span>.<br/><br/>8. Appelbaum PS. Assessment of patients’ competence to consent to treatment. N Engl J Med. 2007;357(18):1834-40. doi: <span class="Hyperlink"><a href="https://www.nejm.org/doi/full/10.1056/NEJMcp074045">10.1056/NEJMcp074045</a></span>.<br/><br/>9. Karlawish J. Measuring decision-making capacity in cognitively impaired individuals. Neurosignals. 2008;16(1):91-8. doi: <span class="Hyperlink"><a href="https://pubmed.ncbi.nlm.nih.gov/18097164/">10.1159/000109763</a></span>.<br/><br/>10. Christensen K et al. Decision-making capacity for informed consent in the older population. Bull Am Acad Psychiatry Law. <span class="Hyperlink"><a href="https://pubmed.ncbi.nlm.nih.gov/8845526/">1995;23(3):353-65</a></span>.</p> </itemContent> </newsItem> <newsItem> <itemMeta> <itemRole>teaser</itemRole> <itemClass>text</itemClass> <title/> <deck/> </itemMeta> <itemContent> </itemContent> </newsItem> </itemSet></root>
