Special assistance needs of young and old place demands on doctors
■ What are primary care physicians' responsibilities to elders who neglect their basic needs?
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Self-neglect has been considered a "social issue," and physicians have been less involved in such issues. Yet our values of social justice and public health argue for active care of vulnerable elders.
Reply: Since the 1970s, medical professionals have understood the need for detection and intervention in cases of frank abuse and neglect, but self-neglect has been considered more of a "social issue" than a medical one. Recent research has shown there are a number of diseases associated with the geriatric syndrome of self-neglect. Self-neglect is an independent risk factor for death; a recent study showed that those who neglected their care had a sixfold increase in one-year mortality. Since 1981, every state has had some form of adult protective services. The latest U.S. Census Bureau data confirm the growth of the elder demographic, and, as a result, the caseloads of APS workers have steadily increased during the last 10 years. Elder self-neglect is the most common report received by APS, yet many cases remain invisible to physicians.
People who neglect themselves often eschew medical interventions, and some even refuse to leave their homes. APS caseworkers do not routinely refer clients to physicians; these caseworkers are not medically trained and may not recognize occult geriatric diagnoses. Many physicians would be willing to assist elders who fall into self-neglect, yet there are no screening tools that have both content and construct validity, nor are there evidence-based interventions. How then can a practicing physician take an active role in helping vulnerable elders in whom they suspect self-neglect?
In the 1990s, interprofessional medical teams formed in a few states to address the needs of elders who neglect themselves. The expert teams developed a multidimensional approach based on standard comprehensive geriatric assessment and intervention. This method includes taking a good history with emphasis on how elders meet their activities of daily living, including both complex tasks, such as house-cleaning, transportation, handling of finances, and basic needs, such as bathing and dressing. Because of the high rates of cognitive and mood impairment, self-reporting is not sufficient for gathering data on these patients; a history from family members or APS workers is needed.
In addition to a good physical exam (e.g., gait and balance, health of skin), screening for dementia and depression is essential, due to the high incidence of both among elders who neglect themselves. Executive dysfunction has been implicated in many cases, but this is far more difficult to determine. No single test of executive function is ideal for every patient, but observation of clutter or filth in the home and the absence of basic utilities such as electricity can be practical indicators of executive dysfunction. Lastly, medication adherence should be evaluated, since nonadherence has been reported in up to 90% of cases.
Once the above assessments are made, an intervention is fashioned for each area of deficit (treatment of medical and psychiatric disorders, adjustment of medications, in-home assistance, physical therapy, etc.). If the elder can comply, cases are monitored for safety and adherence to the medical plan. Often, elders refuse to or cannot carry out the recommendations. Physicians are then obligated to assess the patient's capacity for self-care and self-protection. If that is lacking, then guardianship or conservatorship (depending on state law) should be sought to prevent the serious harm that can result from their lack of ability to meet basic needs.
Physicians should intervene in these highly morbid and mortal geriatric syndromes. The values of medical care coupled with those of public health and social justice should compel every physician to take an active role in the care of vulnerable elders who neglect their own needs.
Carmel Bitondo Dyer, MD, professor and director, Division of Geriatric and Palliative Medicine, and executive director of the Consortium on Aging, University of Texas Health Science Center School of Medicine, Houston
Scenario: How should a doctor respond to parents who seek a diagnosis to obtain financial assistance for their child's special needs?
Paul has retinopathy as a result of premature birth. His mother is seeking benefits for him under the Social Security Administration's financial assistance program, Social Security Income. She also asks about coverage for a child with ADHD.
Reply: You explain to Paul's mother that SSI is based on a determination of medical and financial need. You help her find and complete the forms. During the process, she asks you, "What about Paul's brother, who you diagnosed with attention-deficit/hyperactivity disorder last year? Why didn't you fill out these forms for him?"
The role of any clinician requires relationships that can sometimes be in tension. For example, clinicians are designated as gatekeepers for numerous state programs and agencies, which can force decisions that highlight the conflict between service to a particular patient and service to the larger community (e.g., forced inpatient admission for an individual who is a possible harm to others).
These types of experiences traditionally have been seen as covered by the ethical principle "justice." Since Aristotle, justice generally has been defined as sharing goods or burdens (or both) equally across people or groups of people or time -- in other words, treating like cases in a like manner. Of course, in a finite universe, all health care resources are limited, but in the past this has remained understated or completely unrecognized. With health care reform, there is an increasing recognition of the limits that previously were ignored, and therefore clinicians are being asked to address these issues more often and more directly.
Regarding Paul's mother's question about SSI and ADHD, the impairments related to this condition generally do not qualify for benefits. Clinicians usually follow a two-step process when assessing this type of gatekeeping question: Is this one of the "listed" conditions that our society has named as deserving special notice? And, do the functional limitations caused by this impairment rise to the level that SSI regulations define as warranting support?
The first question deals with the "privileged" status that some conditions hold. Individuals with sensory and mobility impairments historically have been seen as the clearest candidates for support. More recently, other conditions (e.g., kidney failure, autism) have been identified as possibly deserving support through legislation.
The second question deals with the basic "purpose" of SSI: to make sure that individuals receive the help they should receive in a just society. This question is difficult for clinicians, except when patients' impairments are very dramatic. Technology is consistently improving outcomes, so that bodily impairments don't always lead to disabilities.
A way to help Paul's mother is to ask about the relative impairments of her two sons and begin a discussion about the ways that other people view their limitations. In addition, one might want to discuss the interventions that we as a society "pay for" that help overcome these impairments, through technology (e.g., corrective lenses, which are paid for by Medicaid), medications (also paid for by Medicaid) and social accommodations (e.g., an IEP at school or SSI benefits).
Peter J. Smith, MD, assistant professor of pediatrics; program director, Fellowship in Developmental Behavioral Pediatrics, University of Chicago