There is a broad consensus in the medical and legal communities that adult patients have the right to make decisions about their own medical care, including the right to refuse medically recommended and even life-saving interventions.1–3 Much of the time, in clinical settings, physicians understand and accept the patient’s decisions, often because the stakes are modest or because the decision appears reasonable.
At other times, there may be an attempt to persuade the patient to change his or her mind, perhaps involving family members or others important to the patient. When the patient sticks to a choice that the physician feels is clearly wrong-headed and/or dangerous, and persuasion is unsuccessful, consideration may be given to finding a way to override the patient’s decision.
One of the few ways to do this is to question the patient’s decision-making capabilities, and although in theory, any physician can carry out an assessment of these capabilities, often the consulting psychiatrist is brought into this process. This article reviews the clinical, legal, and ethical issues involved in such a consultation.
Under the law, the default status of an adult is to be considered capable of making his or her own decisions about accepting or declining health care. In most legal settings and discussions, this capability is referred to as competency, and those without it are referred to as incompetent (or disabled in some jurisdictions). This determination is strictly a prerogative of the legal system (eg, a judge makes such a determination after review of the facts). Clinicians, however, generally make an assessment of a patient’s decision-making abilities or capacity, but this assessment has no legal standing until it (and other information) goes to the legal system for adjudication. In other words, physicians have no power to “declare” someone incompetent. Some consultees are unaware of this, so the consultant needs to clarify at the onset that his evaluation will be but one step in a process.
Because the default legal status for patients is that of competence, even the presence of an established diagnosis that is often impairing (such as dementia, psychosis, or developmental disorder) does not automatically establish incompetence under the law, nor does it necessarily undermine decisional capacity, the cognate clinical concept.
It is critical to appreciate that the determination of capacity is situation-specific: in the context of this discussion, it refers to the capacity to make particular health care decisions. The patient may be capable of medical decision making while unable to make financial decisions or vice versa. Even within the umbrella of medical decision making, the patient may be capable of some smaller decisions (have a scan, take an analgesic) while being impaired for larger or more complex decisions. The consultant needs to evaluate the patient regarding all of the decisions at hand in a particular case, so these are best clarified at the outset with the consultee, who may be unaware of this issue.4 It is also helpful to clarify that decisional capacity is a two-way street, ie, if the patient is felt to lack capacity for a medical decision and then changes his mind to conform to the physician’s recommendation, this does not automatically mean that capacity has been regained.
The underlying basis of decision making is the notion of informed consent. This follows in large part from the medical ethical principle of respect for patient autonomy. Medical ethics and jurisprudence both demand that to make health care decisions, patients understand what is wrong with them, what interventions are being proposed, and the risks and benefits of these proposed interventions (including no intervention). Implicit in this idea is that such information has been given to the patient and that he or she can then process and evaluate the information to make a decision consistent with his own values and preferences.
There is a tension, however, at times between the physician’s ethical duty to respect the patient’s autonomy and the duty to act in the patient’s best interests: When the patient is incapable of providing true informed consent, he may need to be protected from his own decisions.5 With this more theoretical background in mind, the consultant can consider the necessary steps in carrying out his role.
Requests for assessment of a patient’s decision-making capacity — mostly involving treatment refusal or a desire to leave the hospital against medical advice — are a fairly common reason for seeking psychiatric consultation, generally comprising some 4% to 9% of psychiatric consult requests in a general hospital.6,7 Most of the time the consultant’s assessment will agree with that of the referring physician’s, and about two-thirds of the time the consultant will determine that the patient lacks intact decisional capacity.8
Even more so than with most psychiatric consultations, it is quite important to speak at the onset with the referring clinician to clarify several issues before reviewing the chart, seeing the patient, and speaking with collateral informants.
The critical questions to ask at the onset are:
- What has the patient been told about his condition?
- What specific intervention(s) are being proposed to the patient about which assessment of decision making is to be made?
- What information has already been given to the patient about these proposed interventions and about the consequences of no intervention?
- What information does the treatment team have that has led them to question the patient’s capacity?
- What is the urgency/time frame of deciding about the implementation of the proposed interventions?
- Is the patient aware that the consultant will be seeing the patient for this assessment?
If the patient has not already had the proposed interventions explained to him, this of course needs to be done either before the consultant sees the patient or even at the same time. The latter approach both helps guarantee that appropriate information has been given and provides data about how the patient reacts to and processes the information.
Necessity of Capacity Determination
The other issue to clarify at the onset of the consultation process is whether the capacity determination is even necessary. There are several scenarios under which the patient may not be the legal decision maker, and in these cases the patient’s wishes are not binding. These include:
- The patient is under age: for children, parents must provide the consents, and for adolescents, the scope of their decision making may also be limited by state laws.
- The patient has already been legally adjudicated as incompetent (or disabled) and a substitute decision maker has been appointed.
- The patient has completed a health care proxy document (“advanced directive”) granting someone else the right to make decisions on his behalf, the terms of this directive have been met, and the patient is not (or cannot be) seeking to take back decision making from the proxy.
- The patient is in a physical state such that he cannot convey a decision (eg, unconscious).
Consultation Assessment Procedure
With this information in hand, the consultant can then proceed with the assessment. A review of the chart and, at times, with nursing staff will help provide information that bear on the consultation task. Information about medical history, medications, and behavior in the hospital may suggest what is going on with the patient. Although the consult request is often framed dichotomously (“Is he or isn’t he competent?”), the consultant should gather information to clarify not only the answer to this question but also the reason(s) for the answer. The reasons will of course be necessary for documentation in any legal proceeding, but they might also suggest whether impaired decision making will be permanent (eg, advanced dementia) or can possibly be reversed (eg, delirium or acute psychosis). Thus, the assessment should include diagnostic and prognostic patient features, as well as addressing the primary consultation request inquiry.
Occasionally the psychiatrist will be contacted because the patient is both declining treatment and refusing to explain his reasons for doing so, or the patient refuses the psychiatric consultation to assess decisional capacity. This creates an ethically thorny situation, since refusing to explain is not clear evidence of lacking capacity.9 An attempt at diplomacy or focusing on the refusal process itself (eg, “Can you at least explain why you prefer not to give us your reasons?”) or the involvement of the patient’s loved ones may help “break the logjam,” but failing that, a decision may need to be made based on incomplete information.
In general, the greater the risks to the patient of refusing care, the lower will be the threshold for assuming absent capacity so as not to miss protecting a truly impaired patient.
Grisso and Appelbaum10 have identified four legally relevant criteria for determining decision-making capacity. These are the abilities to:
- Recall and understand the relevant information about the medical situation and the required decision(s) (Criterion #1).
- Appreciate and accept the medical condition and the consequences of following different intervention options (Criterion #2).
- Engage in a rational, reasoned processing of the information (Criterion #3).
- Communicate a choice about preferences for care (Criterion #4).
The examination of the patient should be carried out in a manner designed to address these four issues. This may be done with a focused clinical interview or by using any one of a number of structured or semi-structured instruments that are available for this purpose. The most well-studied is probably the Mac-Arthur Competence Assessment Tool-Treatment (MacCAT-T), which closely follows these four criteria. Its legal and psychometric basis, reliability, and use in medical and psychiatric patients and settings have been described in considerable detail.11–14
Use of Standardized Instruments
The MacCAT-T and several other similar tools have been validated by a “gold standard” of an assessment by an “expert psychiatrist,” “forensic psychiatrist,” or “competency panel.” Thus, a careful clinical psychiatric examination that obtains the critical elements to address the criteria above will likely be equal to or better than such instruments.15
Other standardized instruments to evaluate cognition, mood, clinical diagnosis, and so on, may aid in the diagnostic evaluation but will be of limited usefulness for the decision making determination. For example, the Mini-Mental Status Examination (MMSE) score roughly correlates inversely with capacity: a patient with a score above 24 will seldom be found to lack capacity, while one with a score less than 20 is quite likely to lack it.16,17 However, even patients with lower MMSE scores and clear clinical signs of cognitive impairment (disorientation, hallucinations, confusion, wandering thought processes) may still be capable of making some decisions about their health care, and courts have made such distinctions.18,19
To determine if the patient meets Criterion #1, it is desirable to ask the patient to describe what he understands (or has been told) about his health problem, what has been proposed about treatment, what different options exist for treatment, and what the risks and benefits are for the treatment options (including no treatment). The point here is to see if the patient has retained enough factual information to proceed with the steps for the subsequent criteria. The patient’s knowledge can be somewhat basic or simplistic (“My heart beats funny and they want to give me a machine that will make it beat right or I could die.”); but it should not be too vague (“Something’s wrong with my guts and they want to cut me open.”); or distorted (“I have a chip in my brain the FBI planted, and the doctor will take it out for me.”).
Criterion #2 can be assessed by asking the patient what he thinks is wrong with him; whether he needs any treatment and, if so, what type; what the treatment would do for and to him; what would happen without any treatment; and why the doctor recommended the treatment he did.
Here the consultant is trying to assess the level of denial or distortion about the diagnosis and treatments. This may also clarify an alternative explanatory model for the condition or treatment that might be based on a mental illness (“My neighbor is poisoning me, that’s why I have this lump in my breast.”); or religious or cultural beliefs (eg, a hex or possession).
It may also elucidate distortions about the doctor or health care system (“The doctor just wants my money;” “They are trying to guinea-pig me.”) that are influencing the decision. A decision based on long-held, well-recognized (as opposed to personal, idiosyncratic) religious belief (eg, a Jehovah’s Witness declining blood transfusion) is not evidence of impaired capacity.
Evaluation of Criterion #3 is largely based on asking the patient to explain his reasoning by clarifying how he put the information together. This may be a harder task for some patients, but the consultant is looking for evidence of logical thinking, appropriate weighing of the information the patient has, and a personal consideration of the decision.
Problems that might emerge in this component of assessment would be evidence of actual or perceived coercion (“I have to do what the doctors tell me.”); irrational weighing of outcomes (“I prefer the high-risk surgery because I don’t want to live anyway.”); or frank gaps in logic (“My mother refused surgery for her cancer and lived 5 more years, so I don’t see why I need a new heart valve.”). The focus in this part of the evaluation is on the decision-making process rather than the conclusion reached: the decision does not have to be optimal, wise, or in accord with the urgings of the treatment team or family, but it does need to be reasoned out in some logical fashion.
Embedded in the process of the reasoning is the patient’s awareness of his values or goals and some assertion of how the decision he has reached about care fits with these. This can be complicated when there are multiple or competing goals (“I want to go home, but I don’t want any more pain, and I want to live.”).
Religious beliefs may shape the values and goals, and though these beliefs may seem irrational or even bizarre to the consultant, they do not render the patient incapable of decisional capacity.20 Nonetheless, a marked mismatch between the patient’s longstanding values and the stated rationale for a decision (eg, a lifelong atheist who refuses treatment because “It is now in God’s hands.”) should raise a strong question about capacity.21
Criterion #4 is simply evaluated by asking the patient for his decision or choice about care. The patient does not need to be able to speak or write, but he must be able to convey clearly what his wishes are. Problems are seen here when the patient either does not express a choice or repeatedly changes his mind. There is an important distinction though between profound indecision with repeated vacillation versus mind-changing that is based on an evolving clinical scenario or the incorporation of new information or input. The consultant should make every effort to identify impediments to reaching and expressing a decision and help the patient overcome them if possible.
Thinking about these criteria helps elucidate the kinds of conditions that may impede decision making. Some of the most common disorders and their effects on capacity are discussed in the following text.
The delirious patient may lack the ability to grasp the general sense of what is going on by dint of disorientation (eg, not recognize being in a medical setting or that physicians are there for the provision of health care); be unable to retain imparted information because of memory deficits; have executive dysfunction compromising reasoning or working with information; have perceptual or ideational disturbances affecting judgment (eg, paranoia about providers); or have arousal/attention impaired enough not to allow expression of a choice. Recognition and amelioration of delirium may restore decision-making capability.
Patients with dementia may exhibit the same deficits as those with delirium, although attentional issues are much less common, and there is little expectation that interventions will restore capacity.
Patients with marked enough impairments in intellectual function or communication may be unable to comprehend fully medical recommendations, process information, or communicate a choice.
The presence of even florid psychosis does not necessarily compromise capacity unless the content encompasses issues about the medical situation or its setting. Common impairments here would include distortions about the nature of the health problem or its cause (including a psychotic level of denial about an illness) or paranoid ideation about the intent or motivations of those providing care (“They are only pretending to be doctors, but I know they are really working for my enemies.”)
It is not as often appreciated that patients with significant mood disturbances may have their health care decision making compromised.22 Patients with depression may be unduly pessimistic about a condition’s prognosis or a treatment; may feel undeserving of interventions, especially high-intensity ones or where someone else needs to be involved (eg, a transplant); prefer to die, seeing treatment refusal as a path to suicide; or be too slowed or indecisive to make or evince a choice.
Manic patients may be unrealistically optimistic about a condition or what a treatment can accomplish; be too grandiose to believe they can be ill or to be bothered with decisions or staying for care; or have thought disturbance so marked as to adversely affect reasoned reflection about a situation.23
Substance Use Disorders
Patients who are intoxicated or undergoing withdrawal from many substances of abuse may well impair their decision-making processes. Even those who are not intoxicated or withdrawing may exhibit problems in making health-related decisions since those with addictions are often over-focused on short-term versus long-term gains; can be highly stimulus-bound and perseverative in decision making; and be unduly influenced by issues related to resumption of drug use. Whether these factors rise to the level of incapacity needs to be ascertained on a case-by-case basis.24
Impact of Patient’s Individual Situation
The consultant should take into account psychological and systemic factors at play in the patient’s situations. At times, patients may need some additional time (and assistance) to accept a diagnosis or prognosis, moving too quickly can leave a patient with intact decision-making capacity with a decision he may later regret.
Sometimes a patient’s decision will be influenced excessively by feelings toward the doctor, the care setting, or a family member. Working through some of the idealizing or oppositional feelings, or helping resolve an interpersonal conflict directly may lead to a better and more freely chosen outcome.
Lastly, the consultant will pull together all of the pertinent information and render an opinion about decision-making capacity. Many cases are quite straightforward, and the consultant is being asked to agree with a rather obvious determination by the referring physician. However, many cases will fall into a grayer zone, where incomplete information or appropriate weightings of pieces of information play roles in reaching a conclusion. Although some medical ethicists frown on doing so, in practice, most clinicians use a “sliding scale” that weighs the degree of incapacity alongside of the import of the decision.25,26
In other words, when the consequences of the patient’s decision may lead to a more serious adverse outcome for him, the “bar” for deciding capacity may be set somewhat higher than in cases where the stakes are lower. More detailed descriptions of the nuances of assessing capacity along with some clinical examples can be found in Appelbaum and Gutheil.25
After the evaluation is performed, the consultant needs to document carefully what was learned, ideally by including relevant quotes from the patient. A detailed, full mental status exam, including both cognitive and non-cognitive elements, is vital. And just as the patient has been asked to explain his thinking processes, the consultant needs to include the bases and rationale for his determination about the patient’s capacity. The consultant’s report may become a key document in subsequent clinical and legal processes, so extra care in producing it is advised.
If the patient has been felt to lack capacity, the hospital or other setting will have policies in place to handle the subsequent steps for involving the legal system and identifying potential proxy decision-makers.27
The consultant should also clarify if there is reason to believe that time or a particular intervention might lead to restoration of capacity. A delirious patient might well improve as his underlying conditions are treated or problematic medications withdrawn, and this process may at times be helped by judicious psychopharmacology.
Similarly, a patient who is acutely psychotic or manic may improve considerable with appropriate medication. The time frame for improvement of a depressed patient may be somewhat or considerably longer.
Most of the time the consultee will agree with the consultant’s opinion and be grateful for the documentation and additional support for the patient’s care. At other times, the consultee will disagree or even be displeased with the consultant’s conclusion (usually when treatment will be delayed). However, as is the case with all consultant recommendations, the final decision about how to proceed with the patient’s care is made by the referring physician.
In summary, assessment of decision-making capacity is a fairly common reason for requesting psychiatric consultation. The consultant should be familiar with the ethical, legal, and clinical issues involved in conducting such an assessment and be willing to provide careful documentation of the assessment findings to be of greatest assistance to the consultee and the patient.
- President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Making Health Care Decisions: A Report on the Ethical and Legal Implications of Informed Consent in the Patient-Practitioner Relationship. Vol. 1. Washington, DC: Government Printing Office; 1982.
- Decision-making capacity. In Lo B, ed. Resolving Ethical Dilemmas: A Guide for Clinicians. 4th ed. Philadelphia: Lippincott Williams & Wilkins; 2009:75–82.
- President’s Council on Bioethics. Taking Care: Ethical Caregiving in Our Aging Society. Washington, DC; 2005.
- Ganzini L, Voliver L, Nelson W, Derse A. Pitfalls in the assessment of decision-making capacity. Psychosomatics. 2003;44:237–243. doi:10.1176/appi.psy.44.3.237 [CrossRef]
- Lo B. Assessing decision-making capacity: medical decision-making by and for the elderly. Law Med Health Care. 1990;18:193–201.
- Knowles FE, Liberto J, Baker FM, Ruskin PE, Raskin A. Competency evaluations in a VA hospital: a 10-year perspective. Gen Hosp Psychiatry. 1994;16:119–124. doi:10.1016/0163-8343(94)90055-8 [CrossRef]
- Farnsworth MG. Competency evaluations in a general hospital. Psychosomatics. 1990;31:60–66. doi:10.1016/S0033-3182(90)72218-9 [CrossRef]
- Masand PS, Bouckoms AJ, Fischel SV, Calabrese LV, Stern TA. A prospective multi-center study of competency evaluations by psychiatric consultation services. Psychosomatics. 1998;39:55–60. doi:10.1016/S0033-3182(98)71381-7 [CrossRef]
- Hurst SA. When patients refuse assessment of decision-making capacity: how should clinicians respond?Arch Intern Med. 2004;164:1757–1760. doi:10.1001/archinte.164.16.1757 [CrossRef]
- Appelbaum PS. Assessment of patients’ competence to consent to treatment. N Engl J Med. 2007;357:1834–1840. doi:10.1056/NEJMcp074045 [CrossRef]
- Appelbaum PS, Grisso T. The MacArthur treatment competence study, I: mental illness and competence to consent to treatment. Law Hum Behav. 1995;19:105–126. doi:10.1007/BF01499321 [CrossRef]
- Grisso T, Appelbaum PS, Mulvey EP, Fletcher K. The MacArthur treatment competence study, II: measures of abilities related to competence to consent to treatment. Law Hum Behav. 1995;19:127–148. doi:10.1007/BF01499322 [CrossRef]
- Grisso T, Appelbaum PS. The MacArthur treatment competence study, III: abilities of patients to consent to psychiatric and medical treatments. Law Hum Behav. 1995;19:149–174. doi:10.1007/BF01499323 [CrossRef]
- Grisso T, Appelbaum PS, Hill-Fotouhi C: The MacCAT-T: a clinical tool to assess patient’s capacities to make treatment decisions. Psychiatr Serv. 1997, 48:1415–1419.
- Sessums L, Zembrzuska H, Jackson JL. Does this patient have medical decision-making capacity?JAMA. 2011;306(4):420–427. doi:10.1001/jama.2011.1023 [CrossRef]
- Kim SY, Karlawish JH, Caine ED. Current state of research on decision-making competence of cognitively impaired elderly persons. Am J Geriatr Psychiatry. 2002;10:151–165.
- Kim SY, Caine ED. Utility and limits of the Mini Mental State Examination in evaluating consent capacity in Alzheimer’s disease. Psychiatr Serv. 2002;53:1322–1324. doi:10.1176/appi.ps.53.10.1322 [CrossRef]
- In re Quackenbush, 156 N.J. Super. 282, 383 A.2d 785 (1978).
- Lane v. Candura, 6 Mass. App. 377,376, N.E. 2d 1232 (1978).
- Martin AM. Tales publicly allowed: competence, capacity, and religious belief. Hastings Center Rep. 2007;37:33–40. doi:10.1353/hcr.2007.0012 [CrossRef]
- Cochrane TI. Religious delusions and the limits of spirituality in decision-making. Am J Bioeth. 2007;7:14–15. doi:10.1080/15265160701399560 [CrossRef]
- Gutheil TG, Bursztajn H. Clinicians’ guidelines for assessing and presenting subtle forms of patient incompetence in legal settings. Am J Psychiatry1986;143:1020–1023.
- Bursztajn HJ, Gutheil TJ, Brodsky A. Affective disorders, competence, and decision making. In: Gutheil TJ, Bursztajn HJ, Brodsky A, Alexander V (eds). Decision Making in Psychiatry and the Law. Baltimore: Williams & Wilkins; 1991:153–170.
- Jeste DV, Saks E. Decisional capacity in mental illness and substance use disorders: empirical database and policy implications. Behav Sci Law. 2006;24:607–628. doi:10.1002/bsl.707 [CrossRef]
- Appelbaum PS, Gutheil TG. Competence and substitute decision-making. In: Appelbaum PS, Gutheil TG (eds). Clinical Handbook of Psychiatry and the Law. 4th ed. Philadelphia: Lippincott Williams & Wilkins; 2007:179–215.
- Shore D. Ethical issues in schizophrenia research: a commentary on some current concerns. Schizophr Bull. 2006;32(1):26–29. doi:10.1093/schbul/sbj031 [CrossRef]
- Emanuel LL, Emanuel EJ. Proxy decision making for incompetent patients. JAMA. 1992;267:2067–2071. doi:10.1001/jama.1992.03480150073040 [CrossRef]