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Table 1 (continued)
Your rights and protections as a nursing home resident
ve protection against unfair transfer or discharges: unless it’s necessary for the welfare,
Ha
health, or safety of you or others, nursing home care is no longer necessary or the nursing home
has not been paid or closes. You have the right of appeal
Form or participate in resident groups: including resident councils and the home must
provide space and act upon grievances/recommendations of the group
Centers for Medicare and Medicaid Services
D. A. Smith and R. D. Huss
Elder Abuse, Neglect, andExploitation
Residents within the long-term care continuum represent a population vulnerable to
abuse, neglect, and exploitation by a family member, another resident, a member of
the health care team, or even the facility. Abuse, neglect, and exploitation may be
deliberate or arise due to inadequate staff knowledge and training.
Abuse is an act of commission intended to do harm. Abuse can be physical, nan-
cial, sexual, or emotional in nature. Many episodes of physical and emotional abuse
are sporadic and occur as an unguarded response to an elderly, demented, or mentally ill person’s behavior directed toward a facility caregiver. Resistive, combative,
and assaultive behaviors by the resident may trigger retaliation if the caregiver fails
to understand the behavior is inherent to the disease process. Caregivers are more
likely to be abusive if they lack knowledge of alternative behavioral approaches or
become unduly focused on the need to complete caregiving tasks. Unresolved stress,
depression, and cultural acceptance of punishment increase the risk that a caregiver
be abusive. Abusive caregivers are also more likely to have been abused in the past
or present.
Neglect is an act of omission, the failure to meet one’s obligation to anticipate
and meet the needs of a vulnerable or elderly person. Elders who have been unrecognized as mentally incapacitated, may be neglectful of themselves, refusing assistance, living in squalor, and not attending to their health, hygiene, or safety (a
common occurrence in cases of Adult Protective Services). Neglect may be purposeful or retaliatory. When an elder shows no gratitude or is critical of the care they
receive, neglect may occur. Frequently, neglect is the result of inadequate understanding and anticipation by the caregiver of a vulnerable person’s needs. Poor
knowledge and training on the specics of care giving, inadequate care planning to
delineate anticipated needs, lack of “job ownership,” unprofessional attitudes, and
low motivation of caregivers are all potential risk factors for neglect. Elders with
challenging needs due to morbid obesity or who are slow with assisted feeding have
been shown to be at increased risk for neglect. Neglect can occur when caregivers
fail to recognize that an individual’s disability is progressing and subsequently have
increased care needs. Changes in the plan of care should occur when a change of
resident condition is recognized. Neglect may also occur at the institutional level
due to understafng, or as a result of inadequate supervision, orientation, or training. Lack of staff cohesion, high staff turnover, and inadequate resources can also
lead to institutional neglect.
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Exploitation refers to acts of misappropriation of a vulnerable person’s money or
property. This is not necessarily for the purpose of enriching the perpetrator. For
example, two daughters may have their mother’s best interest in mind as they
decided to sell the home of their mentally or physically incapacitated mother while
she is in the nursing facility recuperating from surgery following a hip fracture, having determined she will no longer be safe and be at high risk for repeated falls if she
continues to live alone. However, exploitation can be overt fraud or theft.
Misappropriating an elder’s pension and Social Security checks for their own use,
and illegal transfers of property without proper consent are examples of exploitation
commonly perpetrated by families. Pilfering a resident’s personal property or medication is another type of exploitation commonly committed by facility staff.
Occasionally, even guardians and those designated as Power of Attorney may
exploit the person they are obligated to protect. Although the Courts require a yearly
report from guardians in order to discourage exploitation, no such oversight is
required of persons with other types of surrogate decision-making authority.
Practitioners should be alert to evidence of exploitation and report such concerns to
the appropriate authority. The state government agency responsible for nursing
home surveys is typically the authority to investigate abuse of a nursing home resident by staff or a family member. State Adult Protective Services or the State
Ombudsman can also be contacted to investigate abuse, neglect, or exploitation.
Abuse, neglect, and exploitation perpetrated by a family member, unpaid caregiver, or other private individual are usually resolved without bringing criminal
charges. In contrast, abuse, neglect, and exploitation of a resident by an institution
or a certied/licensed caregiver within the long-term care continuum are usually
handled by the formal survey process, and increasingly by licensure review and
even criminalization. The CMS State Operations Manual (SOM) requires nursing
facilities to be proactive to:
• Have policies and procedures on abuse prevention.
• Screen potential employees to be hired.
• Provide initial and ongoing staff training on elder abuse.
• Identify potential abuse events to include setting expectations among staff for
reporting.
• Investigate alleged abuse events and incidents that might constitute abuse.
• Protect residents from retaliation or distress during investigations of abuse.
• Report incidents, alleged abuse events, investigations, and facility actions in
response to investigations as required by state and federal authority.
Racial Disparity inQuality ofCare/Patient Outcomes
Examples of poorer medical outcomes in patients of color compared to Caucasians
include: higher use of restraints, more frequent pressure injuries, decreased provision of recommended immunizations, inadequate control of pain, and poor quality
of life. Also, there is an increased burden of illness in persons of color: higher rates
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Table 2 Factors associated with racial disparity
• Geographic/demographic
– Discriminatory community housing practices detrimental to geographic/demographic
diversity
– Discriminatory community nancial lending practices
– Discriminatory community educational practices contributing to disparity in wealth
– Trend to locate assisted living and skilled nursing facilities in higher income areas
• Financial
– Inadequate support of Medicare/Medicaid funding of PA LTC coupled with racial wealth
disparity
– Funding dynamics that concentrate residents of color in lower resourced facilities
– Racial discrimination in staff hiring, salaries, career advancement
– Financially punitive survey practices levying civil monetary penalties on lower resourced
facilities caring disproportionally for residents of color
• Attitudinal
– Racist attitudes causing inequity in access to care and delivery of treatment
– Facility language, menu, activities, and milieu insensitive to or contrary to the preferences
and needs of residents of color
– Attitudes explaining or contextualizing disparities as due to biological or genetic factors
– Historically justied mistrust of caregivers and institutions held by patients of color
– Transfer and placement decisions by discharge planners, social workers, administrators,
attending physicians that are racially biased
– Racist verbal assaults directed toward residents and staff persons of color by other staff
or other mentally capacitated residents
D. A. Smith and R. D. Huss
of heart attack, hospitalization, and mortality. The current COVID 19 pandemic in
the USA attests to such systemic inequity. A complex array of contributing factors
include geography, demography, nancial policy (proprietary and government),
employment policy, and personal attitudes/discrimination. Many, if not most of
these factors are not under the direct control of administrators and medical practitioners. Table2 is a partial listing of structural/institutional, cultural and personal
factors that contribute to racial disparities in healthcare outcomes in nursing facilities (adapted from [2]).
Mental Capacity, Competence, andSurrogate
Decision-Making
All adults are considered mentally competent by law unless adjudicated otherwise.
A court adjudicates competency or incompetency. Physicians and other providers,
as recognized by individual state law, may make a determination of an individual’s
mental capacity or incapacity. Either may be partial or total or be specic to a particular circumstance. Capacity is often decision-specic. To be determined to have
decisional capacity for a proposed procedure or treatment, a person must be able to
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understand its benets, risks, and alternatives (including no treatment); be able to
reason among alternatives; and be able to communicate their decision (i.e., be able
to give informed consent). Incapacity may be permanent as in advanced dementia,
or temporary as in delirium or intoxication. While often used interchangeably, competency is a legal determination by a court of law while mental capacity is a clinical one.
There are several distinct types of competencies under the law. A person is competent to stand trial for a crime if they know the difference between right and wrong
and are able to participate in their own defense. Different criteria exist for competency to make or change a will; this is referred to as testamentary capacity. When
making or changing a will, a person is considered to have testamentary capacity if
they know the nature/extent of their property; know the natural objects of their
bounty (heirs); the disposition that their will is making; and understand the implications of their bequeathal; and be free of undue inuence or coercion.
Practitioners are rarely asked to provide an opinion on mental capacity as it
relates to competence to stand trial, though in cases of resident-to-resident physical
or sexual assault this may occur. Most often practitioners are asked to evaluate mental capacity as it relates to testamentary capacity. Asking open ended questions that
relate to criteria for testamentary capacity, as well as performing a standard test of
cognition, can help determine capacity.
Mental capacity assessment is often needed in long-term care practice to determine a person’s ability to make decisions in their own best interest of a personal,
medical, and nancial nature. Often an adult child is perfunctorily listed as the
“Responsible Party” on the nursing facility demographic face sheet and delegated to
make decisions without any formal authority, with no attempt made to determine
whether the resident is partially or fully able to make their own decisions. This
practice runs contrary to the ethical principle of autonomy and exemplies agism.
Indeed, cases have occurred where a mentally capacitated individual has been kept
in nursing home care against their will, through the combined efforts of the facility,
attending physician, and family.
Conversely, there are nursing or assisted living facilities, which list the resident
as the “Responsible Party” even though the resident is moderately or severely
demented, psychotic, or neuropsychiatrically impaired, and clearly do not have
decisional capacity. This usually occurs when the resident has no close family or
proxy legal representative. When an elder is found to be mentally incapacitated and
is facing a situation requiring an informed decision, the practitioner must consider
all the surrogate decision-making options. In such situations, look for documents
such as living wills or advance care directives, or any individuals who can provide
“substituted judgment” for what the individual would have decided if he or she were
able to express an informed decision.
In many States, statutes have been adopted that list a hierarchy of family decisionmakers, which usually begin with the spouse, then the oldest adult child, and so
forth. This then obviates the need for a more involved legal process (i.e., guardianship). In such cases, practitioners make a determination of a resident’s temporary or
permanent mental incapacity in the medical record, and then proceed to contact the
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family member highest on the hierarchy list who is both capable and willing to be
the surrogate decision-maker. Should a practitioner subsequently believe that this
individual is not acting in the best interest of the patient, then he/she should challenge the person’s surrogate decision-making by submitting a report to either Adult
Protective Services or perhaps to the court dependent as the resident’s area of
jurisdiction.
Other types of surrogate decision-making include a Power of Attorney and
Conservatorships. The latter typically deals only with nancial matters while a
Powers of Attorney may be designated as to decision-making related to “person” or
“estate” or both.
• A General Power of Attorney is a legal document by which a mentally capaci-
tated (presumed competent) person chooses another to make decisions on their
behalf commencing from the time the document is executed and endures until
either death or a future time of mental incapacity. These documents may entrust
broad powers or be limited in scope, e.g., only grant authority to complete a real
estate transaction.
• A Springing Power of Attorney is completed by a mentally capacitated person to
give “their chosen surrogate” decision-making powers at some future time when
the person may become mentally incapacitated.
• A Durable Power of Attorney goes into effect at execution (if agreed to by the
capacitated person) and continues to grant surrogate decision-making power to
the chosen person beyond the occurrence of mental incapacity of the person who
established the durable power of attorney.
Practitioners should remain alert to the circumstance under which a family and
lawyer draw up a Power of Attorney and encourage a mentally incapacitated person
to sign it. Remember that only a person who has mental capacity can execute a
Power of Attorney. Once a person is mentally incapacitated, a Power of Attorney
cannot be legally completed. Then another form of surrogate decision-making such
as a guardianship must be established.
Guardianship. This may be either temporary or permanent. A physician will
often be asked to provide the court an opinion as to a person’s mental incapacity (in
part or total) stating the reason for incapacity and elaborating on any medical condition and medications that affect that person’s mental status and capacity. Typically
this is done using a standardized legal form to be submitted to the court. Upon making a ruling of incompetence, the court judge will name a guardian for surrogate
decision-making. The guardianship may have limitations. For example, a guardian
may not have authority to sign consent for admission to inpatient psychiatric care,
sign a Do Not Resuscitate (DNR), or authorize the withdrawal of life sustaining
treatment. These latter medical decisions may require separate petition to the court
for action. In most States a surrogate decision-maker cannot give permission for the
nursing facility to hide antipsychotic medication in food, give it by force, or by
injection on a routine basis. Even a severely demented or mentally ill person who
has objected to taking medication cannot be forced or tricked to do so. This usually
would not apply to the treatment of a psychiatric emergency in which the behavior
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puts the patient at imminent danger to self or others. In some states, the need for
psychiatric treatment may be sufcient to establish a forced medication order while
in others the standard of danger or imminent danger to self or others must be met.
Guardians should attempt to represent resident/patient choices that follow existing advanced directives. If no such directives exist then the guardian should make a
best effort to make decisions on behalf of their ward that are consistent with known
values, culture, and life history of the ward. When partial capacity exists, the wishes
of the ward should be respected for those decisions made within the connes of
their capacity. When totally incapacitated, the guardian and caregivers should still
attempt to ascertain the resident/patient opinions on different choices, especially
when the probable outcomes of such choices are inconsequential. Wherever possible, assent should be solicited even when consent cannot. Ultimately, guardians or
caregivers exercising substituted judgment must make decisions in the “best interest” of the resident.
Evaluation ofCapacity
An elder’s capacity may be challenged when they make a decision with which others do not agree and should not be prejudiced by either the examiner’s or the caregiver’s preferred choice in a decision. Lifelong poor judgment does not necessarily
indicate mental incapacity. People have a right to make mistakes, and some exercise
this right again and again. However, poor judgment that results from disease of the
brain and that represents a decline from prior intellectual/cognitive functioning may
indicate mental incapacity.
A capacity evaluation should include a formal mental status examination
(Table3). This includes testing of judgment, orientation (time, person, place, situation), memory (recent and remote), the ability to think in the abstract, and to do
Table 3 Elements of a mental capacity evaluation (J O M A C)
• Judgment
• Orientation (time, person, place)
• Memory (recent, remote)
• Ability to think in the abstract
• Ability to calculate
• Ability to explain the nature of the needed decision at hand
• Ability to explain personal implications of choices, understand risks/benets
• Ability to explain the rationale for choices
• Ability to explain how their decision best matches their personal goals
• Ability to persist in a decision unless new facts or circumstances arise
• Ability to negotiate (unless the issue at hand is a core value)
• Evaluate for undue inuence or coercion
• Consider the effect of mental illness on decision-making
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D. A. Smith and R. D. Huss
calculations. Formal brief mental status testing with the Mini Mental Status
Examination (MMSE) or the Saint Louis University Mental Status Exam (SLUMS)
can be helpful.
Judgment can be tested with hypothetical scenarios such as requesting a solution
to the problem, “What would you do if you were the rst person in a crowded movie
theater to discover that it was on re?” Answers not recognizing the need to avoid
causing a panic would indicate faulty judgment. If the need for a specic and important decision has required an evaluation, the clinician should explore the individual’s ability to explain the nature of the decision to be made, their thoughts on the
various possible choices, and assessment of risks and benets. A person with capacity should also be able to articulate how they have come to a decision, what factors
were important to them, and what values and preferences they applied to come to
the decision. Be aware that poor hearing or eyesight can interfere with the individual’s understanding of the issues at hand. Overall, this process is similar to the tenants of informed consent.
Good judgment involves the ability to negotiate in their best interest, and be
congruent to their fundamental human or religious values. For example, an individual may decline a blood transfusion as a Jehovah’s Witness. A person with a
compelling need to be admitted to long-term care facility yet refuses to discuss the
matter and insists that her daughter can meet her needs, though the daughter has
categorically told her she cannot, would demonstrate questionable mental capacity.
If the potential consequences are not too high, such a dilemma may best be handled
by allowing the mother to experience the consequences of her decision. Self-neglect
by a person should be recognized and would support a determination of mental
incapacity.
The ability to think in the abstract can be evaluated by asking the individual to
explain the idiomatic meaning of a proverb with which the individual is familiar. A
concrete (non-abstract) answer may indicate low IQ, low educational level or an
organic impairment of the brain.
Ability to calculate can be tested by requesting the individual to subtract 7 serial
from 100. A value comparison of certain assets may be helpful, e.g., “Which is
worth more? Your farm or your antique car?”
An “enmeshed” family can place undue coercion on an elder family member.
Practitioners should be aware that in certain cultures the opinion of a family leader
or a family consensus is the accepted norm for decision-making.
Mental illness, (e.g., depression and psychosis), can be an underlying cause of
mental incapacity. However, decisions that conform to the individual’s historical
value system, culture, and life history, prior to the onset of mental illness, may be
considered valid. A patient aficted with paranoid schizophrenia who, while scowling at the examiner, refuses evaluation and treatment of a breast mass “because it’s
probably nothing,” probably lacks capacity to make this decision. Or a patient with
suicidal depression who declines electroconvulsive therapy because “it won’t do
any good” or because “I don’t deserve to feel better” is likely incapacitated, while a
similar patient who declines because “I’m scared I’ll have memory loss, you told
me ECT can cause that” is likely capacitated.
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A diagnosis of dementia does not necessarily imply mental incapacity. The
degree of mental capacity will depend on the severity of cognitive loss, the domains
affected, the kind and complexity of the issue, and the potential consequences of the
decision. A study by Marson etal. had shown that most participants with Alzheimer’s
disease with MMSE of 19 or greater had capacity to make and communicate
choices, as well as the potential consequences and rational for their choices [3].
However, practitioners should not use the MMSE score as the sole criterion when
determining capacity. A Standardized evaluation such as the MacArthur Capacity
Assessment Test is not designed to determine if an elder has capacity at a certain
score [4].
End-of-Life Issues
Residents in long-term care facilities often have a limited life expectancy, commonly 2–3years. As such, end-of-life issues commonly arise. It is a federal mandate that upon admission to a hospital, a long-term care facility, home health or
hospice, to inquire whether a patient has an advance directive. In an emergency,
persons without a known advance directive are presumed to have elected to pursue life- saving and life-sustaining treatment. In some States, persons with an
advance directive that includes a DNR, would be presumed the person to have
verbally withdrawn their DNR if they had called for an ambulance. Advance
directives should be reviewed upon admission to the hospital or a long-term care
facility.
An Advance Directive for health care may take the form of a Living Will. Both a
Springing and Durable Power of Attorney are also advance directives that include
designation of a proxy decision-maker. The Living Will outlines the general and
specic wishes of a capacitated individual (or previously capacitated person) as to
various health care interventions to be (or not be) provided irrespective of future
loss of mental capacity. Most living wills lack sufcient directives to address specic clinical circumstance, and often result in doubt and controversy. However, a
living will can provide guidance to the family and thus lessen discord and relieve
guilt. Note that a Living Will may state a person’s desire to receive aggressive treatment such as cardiopulmonary resuscitation (CPR), respiratory intubation, or insertion of a feeding tube.
Issues to consider when completing a Living Will include
• Whether the person agrees or declines to give a Power of Attorney the authority
to consent to research.
• Whether they wish to be an organ donor.
• Whether they wish to accept or decline psychotropic drug treatment and/or elec-
troconvulsive treatment.
• Whether they wish to be allowed to have an emotional, physical, or sexual rela-
tionship with another person if the latter express assent.
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• Whether they wish to continue to have a physical relationship with their spouse
if he/she assents. Be aware that some state surveyors and caregivers (both formal
and informal) believe that once mentally incapacitated, a person may no longer
be able to consent to intimacy with their spouse.
The wishes expressed in a Living Will do not oblige the practitioner to provide
futile care. The American Medical Association denes futile care as medical treatment that would provide little or no benet. Offering futile care (e.g., CPR in an
unwitnessed cardiopulmonary arrest in the nursing home or feeding tube placement
in a patient with end stage dementia) as if it were a reasonable treatment option
breaches the ethical principles of benecence, non-malecence, and delity. It
would be prudent to educate families on futile medical treatments.
There is no ethical difference between withholding or withdrawing a treatment.
For instance, placing a person on a respirator when in acute respiratory failure
does not oblige the practitioner to continue articial ventilation when it is evident
that the patient has intractable adult respiratory distress syndrome. Similarly, a
feeding tube begun in an acute situation where the prognosis for recovery is uncertain, may be legally and ethically removed at a later time when a poor prognosis
becomes clear and meaningful recovery unlikely. At end-of-life controversial
issues may arise such as active euthanasia and physician-assisted suicide. Both
the AMA and AMDA have issued policy statements and white papers on these
issues [5–7].
Ethical andLegal Aspects ofResearch inLong-Term Care
Given the unresolved issues in long-term care, the value of research cannot be
understated. Studies rarely focus on this population because potential subjects
often have confounding diseases and conditions and are at risk to drop out of a
study due to unexpected death or intervening illness. They are also considered a
“vulnerable population” that require a high ethical and legal standard for informed
consent to participate in research. In the past lack of a high standard has resulted
in victimization of patients and research subjects on the basis of race (e.g.,
Tuskegee study of untreated syphilis, and Henrieta Lack unauthorized use of HeLa
cells). Tragically, this has caused mistrust in racial communities such that they are
underrepresented in current research. The high prevalence of cognitive impairment also makes the LTC population vulnerable to abuse in recruitment for
research. Protections and processes for the ethical and legal recruitment of incapacitated persons do allow for a legally recognized surrogate decision-maker to
consent on behalf of the incapacitated person to be a research subject. However,
an elder who in any way demonstrates lack of assent to the research should be
either not enrolled or withdrawn.
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Liability inLong-Term Care
An awareness of liability issues in LTC is crucial to practitioners to the delivery of
care and care transitions. Most practitioners agree that when medical errors occur as
a result of either negligence or purposeful misdeeds that the injured party should be
informed, and if indicated, compensated. Common liability issues in long-term care
are listed in Table4 [8]. Many LTC providers concur that inevitable poor medical
outcomes, inevitable decline in function or cognition, and unavoidable accidents/
injuries are frequently litigated unfairly. A negative view of long-term care by the
public and the press may result in the facility and practitioners open to criticism and
liability.
In order for a medical malpractice action to have merit, plaintiffs must show
• Defendant(s) had a duty to the patient.
• A breach of an existing standard of care occurred.
• The breach was a substantial proximate cause of harm suffered by the plaintiff.
• Harm, injuries, (e.g., damages) and their value.
Given that many nursing facility and assisted living residents have a limited life
expectancy and are not employable, economic damages are often limited. But, non-
economic damages, (e.g., pain and suffering or family/spouse loss of counsel and
consortium) may increase damage. In addition, punitive damages can occur that are
designed as nancial punishment for bad practices by a defendant.
Duty exists when a practitioner or facility has an ongoing relationship with the
patient. Practitioners are duty bound to act in accordance with their professional
standards, while facilities have a duty to act within existing state and federal regulations. Some institutional policies and procedures may exceed professional standards
or regulations. A practitioner is expected to exercise the degree of care and skill that
would be expected of a reasonably prudent practitioner of that same discipline
under the same or similar circumstances.
Table 4 Common liability issues
in long-term care
• Dehydration
• Elopement
• Emotional distress
• Falls/fractures
• Improper use of restraints (clinical and physical)
• Medication errors
• Pressure ulcers/injuries
• Sexual assault
• Single event injuries
• Weight loss
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