You Say “Yes,” I Say “No,” You Say “Goodbye,” and I Say “Hello”
You Say “Yes,” I Say “No,” You Say “Goodbye,” and I Say “Hello”
The patient who refuses to remain in the hospital presents one of the most commonly encountered clinical and ethical dilemmas in psychosomatic medicine. Decisional capacity is often the crucial factor in determining whether a patient can legally and ethically leave the hospital against medical advice (AMA). Decisional capacity is also a critical aspect of evaluating refusals of treatment and placement.
In this article, we review the literature on assessing the capacity to refuse. We then identify some common pitfalls in conducting these evaluations, and offer a practical algorithm for approaching patients who are adamant about leaving the hospital AMA.
Mr S, a 70-year-old chef with chronic hyponatremia and hypertension, is admitted for altered mental status after becoming disoriented and taking all his clothes off during an appointment at the urology clinic. His family reports several “spells” of confusion, dizziness, and reduced ability to ambulate over the previous weeks, raising concern that Mr S is unable to care for himself.
Mr S demands to leave the hospital in the middle of the night AMA and says he will not return or seek medical care anywhere else, no matter how ill he becomes. He has said several times that he just wants to “go home and watch TV because there he has his water jugs and all he needs around him.”
Mr S denies any suicidal ideation, intent, or plan and has no other psychiatric history. He is oriented to person, place, and time; is able to draw a clock; and scores a 26 out of 30 on the Mini-Mental State Examination (MMSE). Despite Mr S’s mental status examination performance, the medical resident is afraid to let him leave because he thinks Mr S is delirious and at risk for a seizure. The resident presents the case to the attending who states, “I am not paternalistic. People have a right to go home and die.”
In addition to the intuitive harms to a patient’s health and health care that spring from his or her refusal of hospitalization and treatment, several studies show that patients discharged AMA are much more likely to be readmitted, and that these readmissions increase the total cost of that patient’s care by over 50%.1-3 Other studies have tried to tease out the various modifiable risk factors that, if unattended to, may predispose patients to refuse treatment or be discharged AMA. These factors, which can be divided for the purpose of analysis into patient-related risk factors and physician-related risk factors, are summarized in Table 1.
Patient-related risk factors include lack of a personal attending, absence of specific goals for medical care, and lack of health care literacy.4,5 A frequently examined physician-related risk factor is empathy or, more precisely, the lack thereof. Treating physicians who have trouble managing their own affect and demonstrating “engaged curiosity” as well as those who have trouble establishing and demonstrating empathy early in the treatment relationship have more difficulty with securing patient adherence.6,7 Larson and Yao8 showed a correlation between a physician’s method-acting skills and the patient’s perceptions of the quality of care.
Closely related to empathy and equally successful at improving patient communication is physician attention to emotional clues. Such attunement facilitates the creation of a trustworthy and authentic therapeutic relationship and is related to the adequacy of nonverbal communications between patient and physician. A sound treatment alliance, in turn, creates more effective care and more connections between physician and patient.9-11 We agree with Bekelman and Carrese12 that refusal of care should be interpreted by the physician as a request to initiate (expand) a dialogue with the patient to investigate various verbal and nonverbal communication breakdowns.
What is already known about assessing capacity of patients who refuse treatment?
? The patient who refuses to remain in the hospital against medical advice (AMA) presents one of the most commonly encountered clinical and ethical dilemmas in psychosomatic medicine. Decisional capacity is often the crucial factor in determining whether a patient can legally and ethically leave the hospital AMA. Decisional capacity is also a critical aspect of evaluating refusals of treatment and placement.
What new information does this article provide?
? We review the literature on assessing the capacity to refuse, we identify some common pitfalls in conducting these evaluations, and we offer a practical algorithm for approaching patients who are adamant about leaving the hospital AMA.
What are the implications for psychiatric practice?
? Navigating the ethics and interpersonal components of capacity evaluation is indeed the professional responsibility of all physicians. That said, it makes a great deal of sense to us that these complicated questions often fall in the lap of psychiatry. Our training helps us to be attuned to both the physician- and patient-related risk factors for refusal of care, such as empathy, treatment alliance, and rapport, and we specialize in diagnosing and treating the most common causes of incapacity. Although not specifically trained as ethicists, consultation psychiatrists naturally assume the role of third party in questions of capacity and therefore can become valuable mediators.
Leaving AMA is best conceived as a dramatic instance of informed refusal of treatment. Seen from this perspective, AMA discharge and treatment refusals are a mirror image of the informed consent process for treatment, requiring a similarly systematic and rigorous assessment of decisional capacity. Informed refusal thus parallels the distinction between withholding and withdrawing of care in end-of-life ethics.13 The distinction between withholding and withdrawing of care reflects a different psychological valence but is conceptually, and even we would argue legally, similar.
In psychiatry, few figures loom larger in the capacity literature than Appelbaum and Grisso.14 Their approach to the criteria for decision-making capacity has become the standard of care in psychiatric ethics. These criteria along with some practical applications from our own clinical experience are summarized in Table 2.
There is a growing consensus that decision making should be appraised with a sliding scale model in which not all decisions require the same level of capacity. Drane15 posited such a system and parsed it into 3 levels on the basis of the relative harm to benefit ratio of the decision. At the first level of capacity, only awareness and assent are needed for a very safe procedure that is very likely to benefit the patient. For the second level, an ability to understand and choose between options is necessary if there are viable alternatives of moderate risk and benefit. For the final level, an appreciation for and an ability to rationally and consistently verbalize and justify the decision are required.
We would like to stress that what are 3 discrete levels in theory, practically exist along a continuum of bridging interval points. Any algorithmic method of determining capacity must therefore strive to avoid the binary declaration of a patient as either “capable” or “incapable.” Clinically, we have found the most difficult capacity cases to lie in the grayness of functional capacity rather than in the black and white of legal incompetence, and we suspect many of our colleagues that do this challenging work have had similar experiences.
Although psychiatric causes for cognitively and affectively based inability to refuse treatment can come from any section of the DSM, we restrict our discussion to the diagnoses that most often render a patient incapable to consent to or refuse care in the medical setting: delirium, dementia, and depression (the “3 Ds” of geriatric psychiatry).
Perhaps the most efficient way to reveal a patient’s cognitive impairments is through direct neuropsychological assessment. While consultation with a neuropsychologist trained to perform a specialized battery of tests is invaluable, many practitioners do not have ready access to such expertise and frequently patients with comorbid psychiatric and medical illnesses lack the attention, energy, and health to complete such tests. Nor is such a battery always necessary to elucidate a cognitive impairment related to a capacity question.
There are several cognitive screens available to hospital consultants for evaluation of a patient across a wide spectrum of cognitive tasks, including the MMSE, the Montreal Cognitive Assessment, and the Veteran Affairs Medical Center Saint Louis University Mental Status Examination.16-18 Although these examinations are intended to be used with relative reliability and efficiency at the bedside, they are often too general and imprecise for a specific capacity question. Also, if delirium is present that affects the patient’s attention, the validity of even these simple bedside screens for dementia and other cognitive disorders is compromised.
We recommend a quick screen for delirium and dementia as outlined in Table 3.
Assuming that the patient has no problem with these tasks, delirium and dementia are unlikely. However, the evidence base suggests that depression, especially the more severe forms, diminishes the adequacy of the treatment choices patients make.19 We recommend the 15-item geriatric depression scale as the most sensitive tool for finding depression in the older population.20 There are several screening options for depression in the adult population, including the Center for Epidemiologic Studies Depression Scale, the Hamilton Depression Rating Scale, and the Beck Depression Inventory.21-23
Treatment of delirium, no matter where it symptomatically begins, always ends at diagnosing and aggressively treating the medical cause of the delirium. Although most dementias sadly are not reversible, the clinician should conscientiously screen for any treatable causes, such as vitamin B12 deficiency. When the dementia is irreversible as in Alzheimer disease, effort should continue to be made to include the patient at every level of decision making possible, including consent.
The psychiatrist’s role
Now that we have discussed the whys, whens, and hows of capacity evaluation for refusal of care, including the demand to leave AMA, a very important question remains: what role should the psychiatrist play? Some health care organization policies and many state laws authorize the practitioner who is primarily responsible for the care of the patient to make a determination of decisional capacity for treatment consent or refusal.
In theory, psychiatrists possess no special skills for determining capacity of a patient to accept or refuse medical care, yet a large percentage of a psychosomatic physician’s work nonetheless involves capacity evaluations. Why the disconnect? Navigating the ethics and interpersonal components of capacity evaluation is indeed the professional responsibility of all physicians. It makes a great deal of sense to us that these complicated questions often fall in the lap of psychiatrists. Our training helps us to be attuned to both the physician- and patient-related risk factors for refusal of care, such as empathy, treatment alliance, and rapport, and we specialize in diagnos-ing and treating the most common causes of incapacity. Although not specifically trained as ethicists, consultation psychiatrists naturally assume the role of third party in questions of capacity and therefore can become valuable mediators.
Not infrequently, patients will refuse to participate in capacity evaluations, often because they have a sense that they will not perform adequately and that a poor performance may result in a loss of control over their lives, such as placement in a nursing home. We explain to patients that health care professionals and family members are concerned about their continued ability to function independently, and the only way we as psychiatrists and patient advocates can address these concerns is through a capacity evaluation. We will sometimes gently tell the patient that if we can’t assess how his mind is working, we may have to assume, on the basis of the report of clinicians and caregivers, that he is unable to manage his affairs. Crucial to securing the cooperation of patients is the assurance that you will act as their advocate to preserve as much of their autonomy as possible.
Finally, let’s return to Mr S, who is demanding to leave the hospital, does fairly well on baseline cognitive testing, yet appears delirious. The first step is to formulate the capacity question: Does Mr S have the decision-making capacity to choose discharge to home in his current medical state, with no contingency plan for emergency follow-up, over remaining in the hospital for continued observation and possible treatment?
Although the potential risks of miscommunication or noncommunication are not clear from the information given, they should be quickly considered: what does Mr S know about his condition, and how is he emotionally responding to his situation? Who has interacted with him since his admission? Have they been able to establish any rapport with him, or have they only amplified his mistrust?
The second step requires an assessment of Appelbaum’s domains of decisional capacity to identify Mr S’s strengths and limitations in his ability to make an informed refusal of hospitalization. In the third step, the clinician applies a sliding scale model to Mr S’s decision to leave with no follow-up. Input from Mr S’s medical team is crucial, because the psychiatrist generally will not have the expertise to evaluate the risk of refusing treatment. Two of our first questions for the consulting practitioner when we initially are called to evaluate a patient who wants to leave AMA are: Have you asked the patient why he wants to leave and what is he telling you? And next, how clinically risky is this decision and how certain is the medical outcome?
It is only at this juncture that we incorporate what many of our medical and surgical colleagues mistakenly assume is the first and foremost part of our consultation: cognitive testing. The focus of this fourth step is to try to discover the broad nature of the patient’s impairments and uncover diagnostic clues. In Mr S’s case, there is some indication that further cognitive testing may be unhelpful, or worse, confounding. Therefore, it is vital that the consultation psychiatrist help the primary care team keep their attention on Mr S’s functional capacity with his extant psychosocial resources to make the specific consent decision to leave the hospital AMA, rather than his general cognitive capacities.
Beware the “simple capacity question” in psychosomatic medicine because it is a shibboleth. The consulting psychiatrist is instead called to dissect the protean nature of capacity along the functional and ethical sinews of the particular situation. The goal of such dissection is to reveal the treatment plan in the patient’s global best interests: clinical indications, patient preferences, quality of life, and contextual features as configured in Jonsen and colleague’s24 famous 4-box method of ethical analysis.
In conclusion, as a mediating presence in capacity conflicts, the psychiatrist may play the vital role of patient advocate. An essential aspect of this advocacy is what we call clinical diplomacy. A clinical diplomat may be called on to assist other health care professionals in sublimating their frustrations and fears into constructive discharge planning or, alternatively, may be called on to bolster the treatment team’s courage to protect the patient from himself. Either way, the task is formidable, yet fulfilling.
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