Profession
Assessing self-neglect in older patients
■ Do physicians have a responsibility to report suspected self-neglect?
The Ethics Group provides discussions on questions of ethics and professionalism in medical practice. Readers are encouraged to submit questions and comments to [email protected], or to Ethics Group, AMA, 515 N. State St., Chicago, IL 60654. Opinions in Ethics Forum reflect the views of the authors and do not constitute official policy of the AMA. Posted Aug. 4, 2008.
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Scenario: Older patients with chronic conditions can, over time, lose the ability to care for their own basic needs and safety. But how can physicians maintain respect for a patient's autonomy while assessing self-neglect?
Response:
Self-neglect is the inability to care for one's own basic needs, including health, welfare and safety. In two national studies, self-neglect was cited most often for referrals to adult protective services, more common than any category of elder mistreatment, including neglect by others. Older people who do not care for their own health and well-being adequately typically have functional impairments and lack necessary support networks; ultimately, they lack the cognitive capacity for self-protection.
A landmark 1998 study in the Journal of the American Medical Association revealed that self-neglect is medically significant and is associated with an increased risk for death. Those who refuse medical care may suffer higher morbidity from untreated medical conditions. Usually the person who is neglecting his or her own care is not aware of the need for assistance, or agrees to get help but then refuses services. The factors that contribute to self-neglect are still incompletely understood. But a geriatric medical team at the Baylor University College of Medicine, Houston, recently developed and published a model of self-neglect in the American Journal of Public Health, and researchers are seeking to understand it as a geriatric syndrome rather than a distinct medical condition. In geriatric medicine, the concept of a syndrome assumes multiple etiologies and resultant functional decline.
Physicians who see older patients have an incontrovertible professional duty to be aware of symptoms of self-neglect, assess their patients' capacity and call for assistance from disciplines complementary to medicine. Although some of the most severe cases are not brought to medical attention until a crisis develops, a study of 91 patients with self-neglect syndrome found that 92% had contact with their primary care physician within three months before their assessment by protective services. The National Elder Abuse Incidence Study, published in 1998, revealed that hospitals and health care professionals report 31% of substantiated self-neglect cases. These findings mean that doctors are in an ideal position to recognize self-neglect and report it when necessary.
Clues to the presence of self-neglect come to light in good history-taking and physical examination. Dementia, depression, alcoholism and psychosis often are associated with self-neglect. A patient's memory problems, known diagnosis of dementia or depression, lack of concern about a chronically open wound, or noncompliance with medical recommendations should raise red flags. If medications are not having the anticipated or desired effects, physicians should see if the patient is refilling prescriptions on time and taking the recommended doses. Inability to manage medication can signal broader areas of self-neglect. Social history often reveals a lack of adequate back-up support systems for the patient's caretaking.
Signs that may warn of self-neglect during a physical exam include malnourishment, poor hygiene, and non-healing or advanced skin sores or infections. Functional decline may be uncovered by evaluating discrepancies in the history and physical. For instance, a patient who shows significant, unexplained weight loss may be unable to shop for groceries. Logical explanations should be pursued for these observations, and the possibility of self-neglect considered as part of the differential diagnosis.
When a physician suspects self-neglect, the foremost consideration -- along with treatment of acute medical problems -- should be whether the patient is safe in returning home. If the physician thinks the patient is an immediate danger to himself or herself, then a psychiatric evaluation and possible hospitalization is indicated. Most states require the reporting of self-neglect to protective services. If safety continues to be a concern, law enforcement also may be called to do a welfare check. In the majority of states, law enforcement officials have the authority to hospitalize those who are a danger to themselves or others, or are unable to care for themselves.
In cases where a patient is not in immediate danger, a less urgent approach may be taken. The decision to rally interdisciplinary assistance may be the most important medical intervention that a physician can make during the clinic visit. Respecting a patient's rights during a team assessment is of the utmost importance. A person is always assumed to have capacity unless a formal assessment reveals otherwise. If a patient is engaging in self-neglect but is found to have capacity, regular physician visits can help monitor emerging problems. It is likely that such behaviors will worsen over time. If new concerns arise, then additional reports to protective services should be made.
Social services can provide much needed assistance through home visit assessments and linkages to other resources, such as the public guardian or geriatric case managers. Often, a home visit by a physician, nurse or social worker is invaluable.
Mrs. Smith is a case in point. After a fall causing a shoulder injury, physical therapy was prescribed. Mrs. Smith attended most of her appointments but appeared confused with the home exercise instructions. A visit by a social worker revealed that her trailer home was in disrepair, filled with rat feces and rotten food, and had moldy walls and clutter that created a fire hazard. Sitting on the kitchen table were her physical therapy instructions, the pages covered with roach droppings.
After the history-taking and medical evaluation is complete, baseline cognitive and psychological functioning is generally established, often with a tool such as the Mini Mental Status Exam. But the MMSE does not assess capacity, because it does not cover judgment, insight or the ability to execute decisions. Tests, such as clock drawing, which involve planning, are needed to assess executive dysfunction. At least one study has suggested an association between executive dysfunction and impairment of activities of daily living.
Physicians are given the right to make declarations about capacity and do so on a daily basis, but often do not receive any formal training on this topic during medical school or residency. Determining a patient does not have the capacity to understand, reason and appreciate the consequences of self-care decisions can lead to the loss of self-determination and often precedes a referral for conservatorship. Hence, referring the patient to a psychologist or geriatrician who has training in determining capacity is many times the best course of action.
What can be done when a patient is found to lack capacity? If a relative or other responsible party is willing to file for conservatorship, this can be accomplished with the assistance of an attorney. If no relative or trusted other is available, a representative from the public guardian or a professional conservator can fulfill this role.
Such was the case with Mrs. Fleming, a widow for 10 years. Mrs. Fleming called the fire department about a kitchen fire. When emergency personnel arrived, she appeared confused and paranoid. She was reported to protective services for a suspicion of self-neglect. During the required physician's interview, Mrs. Fleming noted that strangers were always breaking into her apartment, moving her belongings around and turning on the stove. She acknowledged that this was disturbing to her and wished they would go away. The medical examination revealed hyperthyroidism and moderate dementia with psychosis, and the physician prescribed medication for both, which Mrs. Fleming agreed to take. Mrs. Fleming returned for follow-up appointments at her physician's office but never started taking either medication. Referred for a capacity assessment, she was found to lack capacity for all areas of self-care. Since she had no living relatives, her case was forwarded to the public guardian's office for a conservatorship evaluation. A guardian who makes decisions for an older person always must make the least restrictive decision and adhere to the individual's wishes as much as possible.
Self-neglect was blatant and extreme in the examples cited but was discovered only after someone questioned a patient's nonadherence or confusion. The need for social services help and evaluation is not always so stark. Nevertheless, physicians who see older patients -- or even patients living alone without family members or social support -- have an obligation to recognize and pursue explanations for signs and behavior that may signal self-neglect. Acting on these signals is not always comfortable -- particularly if patients' spouses or other family members are in the picture. But self-neglect exposes patients to greater risk for morbidity and mortality that can be avoided once it is recognized and managed. The physician's role is clear.
Lisa Gibbs, MD, associate clinical professor, geriatrics program, Dept. of Family Medicine, University of California, Irvine; director, Health Assessment Program for Seniors, UCI Medical Center, Orange; geriatrician, Elder Abuse Forensic Center, Santa Ana
The Ethics Group provides discussions on questions of ethics and professionalism in medical practice. Readers are encouraged to submit questions and comments to [email protected], or to Ethics Group, AMA, 515 N. State St., Chicago, IL 60654. Opinions in Ethics Forum reflect the views of the authors and do not constitute official policy of the AMA.