Winter 2003-4
Featured Article

Family Caregivers' Legal Concerns

By Marshall B. Kapp

Family and other "informal" caregivers are the backbone of the contemporary long-term-care system in the United States, providing much of the assistance to individuals who have difficulties in performing activities of daily living but want to remain in a non-institutional environment (Donelan et al., 2002; Pandya and Coleman, 2000; Family Caregiver Alliance, 1999). Indeed, informal care from adult children significantly reduces nursing home admissions for the elderly (LoSasso and Johnson, 2002). Family caregivers have a variety of legal concerns about their rights and responsibilities in the caregiving role (Wackerbarth and Johnson, 2002). This article outlines some of the most salient of these issues, and suggests resources for families to consult regarding their ongoing need for timely and accurate legal information and advice.

I use the term family caregiver here to refer not only to people related to the care recipient by blood or marriage, but also to others with whom the recipient has a close emotional relationship. However, in many circumstances, the extent of one's legal rights or responsibilities depends on whether one strictly meets the applicable definition of family member contained in a jurisdiction's statutes, regulations, and judicial precedents.

A DUTY TO CARE?

A basic issue for many family members confronted with the long-term-care needs of an ill or disabled relative is whether there exists a legally enforceable obligation on their part to provide caregiving assistance to the individual, especially when active family involvement is essential to implementation of the individual's desired care plan (for instance, the individual prefers to remain in her own home rather than entering a nursing home) (Blair, 1996-97). The short answer is that, although strong arguments may support a moral duty in this situation (Wikler and Hirschfeld, 2003-04; Jecker, 2002), no law compels family members to personally provide direct, hands-on care to dependent relatives.

Family caregivers, thus, are people who have "volunteered" for this role in the sense that they legally could have declined. Voluntariness in this context may be much more complex, though, from a psychological perspective. In many cases, the amount of subtle or direct "persuasion" exerted on family members by health and human-service professionals, other family members, or the care recipient may be considerable.

Once a family member has chosen-more or less willingly-to undertake the caregiver role, then every state has a statute that makes it illegal as a form of elder mistreatment for the caregiver to willfully ignore the basic needs of, or otherwise through acts or omissions endanger, the dependent person. In more than forty states, health and human-service professionals have an obligation to report suspected cases of abuse or neglect to the local Adult Protective Services agency, and in the remaining states those professionals are immunized against any liability for making good faith reports (Kapp, 1995a). However, legitimate (that is, driven either by the client's own wishes or by a consideration of the client's best interests) decisions by a caregiver to limit medical or other types of intervention for an individual on the basis of a good-faith effort to weigh the burdens versus the benefits should not be considered mistreatment.

The applicable statute in Alaska, for example, (Statute § 47.24.900[3][a]) is typical in defining a caregiver as "a person who is providing care to a vulnerable adult as a result of a family relationship, or who has assumed responsibility for the care of a vulnerable adult voluntarily, by contract, or by court order" (emphasis added). Elder mistreatment laws thus apply only once a caregiving relationship has been established and do not require any family member to enter into such a relationship in the first place. Even when such a relationship has been established, the family may fulfill its obligation to refrain from neglect by securing formal caregiving-institutional or community-based-for the dependent person rather than providing the services itself.

When a family member agrees (more or less voluntarily) to undertake the caregiving role, both the caregiver and the client have certain expectations about the implementation of their relationship. Since each party makes at least implied (and in some cases express) promises about his or her own end of the bargain, their relationship may be characterized as a contract. It is unlikely that a court would legally enforce the terms of such a contract, and certainly not by ordering specific performance of implied promises, but nonetheless it behooves both the caregiver and client to reach as clear an understanding as possible, as early as possible, about their mutual expectations and commitments. This understanding may be altered continually, of course, as the needs and capacities of the respective parties evolve over time.

While the law does not impose direct caregiving responsibilities on families, approximately thirty states (as well as several other countries, including Italy, Israel, Japan, and Singapore) still have in effect family or filial responsibility statutes enacted more than half a century ago imposing a duty on adult children, if they are able, to provide financial assistance to indigent parents (Lee, 1995). The courts have tended to uphold the validity of these statutes against the claims (among others) that they violate the U.S. Constitution's 14th Amendment mandate of equal protection of the law and the Constitution's prohibition against government taking of property from individuals without just compensation (Jacobson, 1995). As a practical matter, though, these laws are very rarely enforced; almost a dozen states' filial responsibility statutes have never been invoked against any nonsupporting adult child (Wise, 2002).

The financial status of adult children regarding the formal care of disabled parents needs to be distinguished from the obligations of spouses of people receiving paid long-term-care services. Under the traditional legal doctrine of "necessaries," each spouse has been held equally (jointly and severally) liable for debts incurred by the other spouse for "necessary" goods and services. A number of states lately have modified the apportionment of financial responsibility for necessaries between the two spouses by holding the spouse who incurred the necessary expense primarily liable for payment, with the other spouse becoming secondarily liable when the spouse who incurred the expense does not have sufficient assets or income to satisfy the debt (Simons, 1998).

The other side of the coin may appear when a family insists on participating in caregiving for a disabled or ill relative but that person objects. Families have neither a duty nor a right to be involved, as long as those individuals who object to the family providing direct services to them are capable of making and expressing their own autonomous decisions (see below).

WHAT PUBLIC FINANCIAL ASSISTANCE IS LEGALLY AVAILABLE?

For seriously disabled older individuals, the services of paid professional caregivers are usually necessary to complement family caregiving arrangements. Consequently, families are intently interested in identifying and gaining access to sources of public financial assistance for which the disabled person may be legally eligible, and they specifically want to know how the care recipient may qualify for Medicaid coverage for nursing home services or home and community-based long-term-care services.

Medicaid is a joint federal-state program created by Congress as Title 19 ("Grants to States for Medical Assistance Programs") of the Social Security Act. Medicaid pays healthcare providers for rendering specified health-related services to specified groups of people who satisfy a financial means test. Federal rules entitle older and disabled people to Medicaid benefits if their incomes and assets are low enough to qualify them for the federal Supplemental Security Income (SSI) cash assistance program. In addition, many states allow people to become eligible under a "medically needy" category if they "spend down" their income and assets on care. Title 19 requires that every state Medicaid program offer nursing home care among its basic services. Beyond that, each state has obtained from the Secretary of the Department of Health and Human Services (DHHS) one or more waivers that permit the state to use the federal component of Medicaid funds to match the state's contribution to pay for home and community-based long-term-care services that would not otherwise fit within the narrow coverage confines of the Medicaid statute and regulations (Leutz, 1999).

Prior to August 21, 1996, Congress had established civil penalties for improperly transferring or divesting assets in order to qualify for Medicaid long-term-care coverage. Under the Medicaid law, there is a defined "look back" time during which a transfer of assets (such as giving money to a child or grandchild) results in a period of ineligibility for Medicaid. For most transfers, the look-back period is the 36 months prior to application for Medicaid coverage; for certain kinds of trusts, it is sixty months prior to application. A number of states have asked DHHS for permission to lengthen both the look-back time and the period of ineligibility.

When the Health Insurance Portability and Accountability Act (HIPAA) of 1996, Public Law No. 104-191, came into effect, it exposed to criminal punishment for fraud and abuse anyone who "knowingly and willfully disposes of assets (including by any transfer in trust) in order for an individual to become eligible for medical assistance under [Medicaid], if disposing of the assets results in the imposition of a period of ineligibility for such assistance." This provision became popularly known as the "Granny goes to jail" law. The 1997 Balanced Budget Act amended this provision by, instead of exposing the Medicaid applicant to criminal penalties, singling out the person who "for a fee knowingly and willfully counsels or assists an individual to dispose of assets in order for the individual to become eligible for medical assistance under [Medicaid], if disposing of the assets results in the imposition of a period of ineligibility for such assistance" (42 U.S.C. §1320a-7b). Under this statute, it would be Granny's attorney or accountant who could be prosecuted regarding improper asset divestiture. However, that enactment has been challenged and invalidated on constitutional grounds of First Amendment freedom of speech in federal court (New York State Bar Association v. Reno, 1997).

Related to the issue of Medicaid eligibility for long-term care is the issue of estate recovery. Federal law requires the states to establish estate recovery programs to take back the costs of long-term-care services from the estates of deceased Medicaid beneficiaries who were 55 years of age or older when they received benefits. States may obtain liens against a Medicaid beneficiary's property for this purpose.

WHO CONTROLS DECISIONS AND INFORMATION?

Substantial attention in health law and medical ethics has been devoted to the family's role in situations involving dramatic, life-and-death medical treatment decisions (Levine and Zuckerman, 1999). However, many kinds of both urgent, "four-alarm" decisions and mundane personal, medical, and financial choices need to be made for long-term-care recipients on a continuing basis. Family caregivers, as de facto service planners and brokers, frequently confront questions about the locus of legal authority for making specific decisions about their relatives, especially regarding the employment of formal caregivers to assist with the client's needs and whether and when the client will be transferred to a healthcare facility or a different residential setting.

The initial inquiry in this context ought to be whether the client is cognitively and emotionally capable of engaging in a voluntary, informed decision-making process. When the client is capable of making decisions, the doctrine of informed consent dictates that the client act as the ultimate decision-maker.

Many capable clients willingly choose to include their family caregivers extensively in their decisions. The client may delegate decision-making authority to a specific family member formally, by executing a durable-power- of-attorney document, although usually such a delegation will be unspoken, with the client ostensibly making the decision (and thereby exercising legal authority) but in actuality relying largely or completely on the caregiver's judgment. Clients may make specific relatives (or others) joint owners of their real property or financial accounts, intentionally empowering another to make decisions and take actions regarding the disposition of the jointly owned property or accounts. Capable clients also may rely on their families to various lesser degrees without delegating total decision-making power to them. Many people with cognitive impairments may have difficulty making adequately competent decisions on their own, but can be rendered capable "enough" with the support and assistance of family caregivers. While the client in such circumstances remains the legally empowered decision-maker, in reality the "voices" of both the client and caregiver contribute to the outcome (Feinberg and Whitlatch, 2002).

When a dependent client lacks decisional capacity, even without having designated durable power of attorney, the family caregivers ordinarily act as proxy decision-makers. The presumed legal stature of family members is reflected in the law in, for example, family-consent statutes in effect in over half the states. These statutes authorize relatives, in an enumerated priority order, to make specific kinds of medical decisions on behalf of an individual who is incapable of making decisions and who has not executed an advance instruction or proxy directive. As one commentator asserted three decades ago, the tradition of seeking consent and advice from family members is "so well known in society at large that any individual who finds the prospect particularly odious has ample warning to make other arrangements better suited to protecting his own ends or interests" (Capron, 1974). Even when formal legal authority has not been definitively established, family caregivers should seek a judicial guardianship or conservatorship order only in the exceptional situations where unambiguous legal delineation of respective rights and responsibilities really is needed (for example, when property solely owned by the client must be sold to pay for formal care) (Kapp, 2002).

The question of decision-making authority and family caregiving has parallel ramifications for the handling of access to, and confidentiality of, medical (and other) information concerning the care recipient. Improper disclosure of client-specific information to a third party without either explicit prior authorization by the client (i.e., a waiver of confidentiality rights) or a guardianship/conservatorship order judicially appointing the third party to act as decision maker for the incapacitated client theoretically violates a formal caregiver's common-law confidentiality duties and pertinent professional code of ethics. In a real-world home environment in which the family is intimately involved in providing care, there is no practical way to keep information about the client away from the family caregivers. They can readily monitor and control the flow of communication among the dependent individual, formal caregivers, and the rest of the universe, as well as the release of information about the client to third parties. Families legitimately need adequate information to provide proper care, besides requiring such information to knowledgeably fulfill their role in making or influencing key decisions. Health and human- service professionals arguably would be negligent in withholding relevant information from the family if the ignorance thus imposed threatened the family's caregiving performance and hence placed the client at avoidable risk.

Complicating the confidentiality issue is the set of federal regulations (45 Code of Federal Regulations Parts 160 and 164) that became effective on April 14, 2003, to implement the medical privacy provisions of HIPAA. These regulations impose significant restrictions and documentation requirements on healthcare providers, among others, regarding the release of identifiable medical information to persons or entities other than the patient. The regulations allow limited exceptions when information transmittal is necessary for purposes of treatment coordination, payment, or healthcare operations. The extent to which the HIPAA regulations end up affecting how healthcare providers share medical information with family caregivers, absent explicit authorization to do so either from a client capable of making decisions or a court, remains to be seen. The practical parameters of HIPAA will be incrementally developed and delineated through litigation and, perhaps, the promulgation of further regulatory guidance.

DO I NEED A PROFESSIONAL LICENSE?

The question often arises as to whether the family caregiver must be licensed to provide particular services. In theory, professional licensure laws may act as a complicating factor concerning informal caregiving. Physician orders (in an increasing number of jurisdictions nurses also have prescribing authority, albeit under physician supervision), for prescription or over-the-counter medications or for other forms of therapy, normally are directed at other healthcare professionals for their implementation. However, when willing and able family members are available, it is typical and broadly accepted practice for home health agencies and hospital or nursing facility discharge planners to train those relatives to provide certain personal care and homemaker services for the disabled individual.

Most state Nurse Practice Acts explicitly exempt from their restrictions health-related services provided by family (and in most cases, friends too) to care recipients in their homes. Research reveals no reported findings of liability against either a family member, supervising home health agency, or primary physician for negligence by the family member in the performance of health-related services provided within the individual's home.

No state explicitly empowers family caregivers to administer medications or other medical treatments. Neither do most states expressly disallow this practice. It is common for family members to help relatives take over-the-counter medications. The legal authority of family members to administer prescription drugs without technically violating Nurse Practice Acts is, theoretically, more problematic. As a practical matter, relatives help care recipients to take medications thousands of times per day without any reported criminal prosecutions for practicing nursing without a license. The legal situation becomes murkier still in the case of more complicated medical interventions, such as the operation of sophisticated machines.

WHAT IF THE CARE RECIPIENT INJURES SOMEONE?

Another common question is whether the caregiver can be held legally liable if the care recipient injures someone else. Individuals for whom family caregivers are caring may injure third parties through their actions. For example, a mentally impaired care recipient might physically abuse and hurt a formal caregiver who comes into the home to provide services or assault a delivery person whom the care recipient mistakes for an intruder. The extent to which a family member who has voluntarily undertaken the care of that individual may be held legally responsible for the individual's injury-producing wrongful behavior is a matter of potential concern and uncertainty, and one with substantial public policy implications (Richards, 2001).

Family caregivers probably could not successfully argue as an affirmative defense to a civil action brought by an injured formal caregiver that the formal caregiver had assumed the risk of possible injury by a mentally impaired client as part of his or her job. At the same time, it is equally unlikely that a court would hold a severely mentally impaired care recipient or that person's family caregivers liable for the injurious acts of the mentally impaired person in the first place. People who were injured in their work capacity would have at least partial redress available through state-administered worker's compensation systems, which are no-fault in nature and funded through mandatory premiums paid by employers, and which operate as an alternative to civil lawsuits.

There are, though, two main exceptions to tort law's general reticence to hold informal caregivers directly liable for the injuries that a person under their care inflicts on others. These exceptions are the following: "(1) when the caregiver is on notice of the dangerous propensities of his charge and has assumed control of the person's actions; and (2) when the caregiver assumes the duty by trying to prevent the dangerous activity, but fails" (Richards, 2001, p. 658). On one hand, these exceptions, permitting injured third parties to seek redress (that is, monetary damages) from informal caregivers in the civil justice system, might have the salutary effect of encouraging informal caregivers to more tightly control the actions of mentally impaired individuals for whom they have voluntarily assumed care responsibilities, thereby preventing some injuries from occurring.

On the other hand, however, frightening informal caregivers with the specter of being exposed to personal liability for the acts of their care recipients may have negative consequences. First, anxiety about legal repercussions may discourage some family members who otherwise would have been willing to voluntarily enter into or continue the caregiving role from doing so. Second, apprehensions may raise the level of sacrifice for family caregivers, by compelling them to pay premiums to purchase insurance (even assuming that such an insurance product were available in the marketplace) to protect themselves against the financial risks associated with legal exposure for negligent caregiving. Perhaps most important, expanded liability exposure of family caregivers could encourage them to exercise control efforts that would severely impinge on the freedom enjoyed by care recipients. For instance, it is questionable whether advocates for older and disabled people would consider as positive developments such family caregiver conduct as physically or mentally restraining people to keep them from acting out (Kapp, 1995b) or initiating or consenting to other restrictive behavioral strategies.

WHAT ABOUT LEGAL PROTECTIONS AND BENEFITS?

Besides being financially compensated for their services under some limited circumstances (Kunkel, Applebaum, and Nelson, 2004), family caregivers are entitled to certain legal protections and benefits by virtue of their caregiving activities. For example, the dependent care tax credit may be available to assist with the costs of providing care for a disabled spouse or parent (National Women's Law Center, 2003). Moreover, an individual who serves as the primary caregiver for a disabled family member in the home is protected against discrimination under the Americans With Disabilities Act (ADA), which provides that "a public accommodation shall not exclude or otherwise deny equal goods, services, facilities, privileges, advantages, accommodations, or other opportunities to an individual or entity because of the known disability of an individual with whom the individual or entity is known to have a relationship or association" (28 C.F.R. §36.205). Some commentators have suggested that the federal or state governments, in recognition of the benefit of family caregiving services and as an incentive for families to continue providing those services, should extend some type of disability and workers' compensation insurance coverage to family caregivers who are at risk of being injured in the course of their caregiving activities (Richards, 2001).

WHERE CAN I FIND LEGAL ADVICE?

When a family caregiver feels the need for legal assistance regarding the sorts of complex issues discussed above or others (such as helping the disabled person to execute advance directives and a testamentary will while still capable of making decisions), establishing a comfortable, ongoing working relationship with a qualified attorney-akin to the ideal relationship forged between patient and primary care physician-is essential. Elder law has become a recognized specialty. Among places to seek out recommendations for an appropriate attorney are one's physician (especially if the physician has a large geriatric practice), the social worker at health facilities or agencies with which the caregiver has contact, the local area agency on aging, local organizations such as the Alzheimer's or Parkinson's Disease associations, and, most prominently, other caregivers who are in similar situations and have successfully found legal counsel. Most local bar associations operate lawyer referral services; if this resource is used, the caregiver should ask specifically for the names of attorneys who specialize in elder law. The National Academy of Elder Law Attorneys, www.naela.org, maintains a geographical roster of certified elder law specialists, as well as state affiliates. Selecting an attorney who has achieved NAELA certification and membership in the state affiliate should be highly encouraged when a family caregiver is searching for legal counsel regarding the extent and limits of caregiver rights and responsibilities.

Marshall Kapp, J.D., M.P.H., is professor and director, Office of Geriatric Medicine and Gerontology, Wright State University School of Medicine, and adjunct law professor, University of Dayton School of Law, Dayton, Ohio.

REFERENCES

Blair, J. 1996-97. "Honor Thy Father and Thy Mother" -But for How Long?-Adult Children's Duty to Care for and Protect Elderly Parents." University of Louisville Journal of Family Law 35(4): 765-82.

Capron, A. M. 1974. "Informed Consent to Catastrophic Disease and Research Treatment." University of Pennsylvania Law Review 123(2): 340-438.

Donelan, K., et al. 2002. "Challenged to Care: Informal Caregivers in a Changing Health System." Health Affairs 21(4): 222-31.

Family Caregiver Alliance. 1999. Fact Sheet-Selected Caregiver Statistics. San Francisco, Calif.

Feinberg, L. F., and Whitlatch, C. J. 2002. "Decision-Making for Persons With Cognitive Impairment and Their Family Caregivers." American Journal of Alzheimers Disease and Other Dementias 17(4): 237-44.

Hirschfeld, M., and Wikler, D. 2003-04. "." Generations 27 (4): 56-60

Jacobson, R. M. 1995. "Americana Health Care Center v. Randall: The Renaissance of Filial Responsibility." South Dakota Law Review 40(3): 518-45.

Jecker, N. 2002. "Taking Care of One's Own: Justice and Family Caregiving." Theoretical Medicine and Bioethics 23(2): 117-33.

Kapp, M. B. 1995a. "Family Caregiving for Older Persons in the Home: Medical-Legal Implications." Journal of Legal Medicine 16(1): 1-31.

Kapp, M. B. 1995b. "Restraining Impaired Elders in the Home Environment." Journal of Case Management 4(2): 54-9.

Kapp, M. B. 2002. "Decisional Capacity in Theory and Practice: Legal Process Versus 'Bumbling Through'." Aging and Mental Health 6(4): 413-17.

Kunkel, S. R., Applebaum, R. A., and Nelson, I. M. 2004. "For Love and Money: Paying Family Caregivers." Generations 27(4): 74-80.

Lee, A. 1995. "Singapore's Maintenance of Parents Act and U.S. Filial Responsibility Laws." Loyola L.A. International & Comparative Law Journal 17(3): 671-99.

Leutz, W. 1999. "Policy Choices for Medicaid and Medicare Waivers." Gerontologist 39(1): 86-93.

Levine, C., and Zuckerman, C. 1999. "The Trouble With Families: Toward an Ethics of Accommodation." Annals of Internal Medicine 130(2): 148-52.

LoSasso, A. T., and Johnson, R. W. 2002. "Does Informal Care from Adult Children Reduce Nursing Home Admissions for the Elderly?" Inquiry 39(3): 279-97.

National Women's Law Center. 2003. Credit Where Credit is Due: Using Tax Breaks to Pay for Child and Dependent Care. Washington, D.C.:Author.

New York State Bar Association v. Reno. 1997. F. Supp. 710 (N.D.N.Y. 1998).

Pandya, S. M., and Coleman, B. 2000. Caregiving and Long-Term Care. Fact Sheet, AARP Public Policy Institute, Number 82. Washington, D.C.

Richards, E. P. 2001. "Public Policy Implications of Liability Regimes for Injuries Caused by Persons With Alzheimer's Disease." Georgia Law Review 35(2): 621-60.

Simons, J. S. 1998. "Is the Doctrine of Necessaries Necessary in Florida?" Florida Law Review 50(5): 934-54.

Wackerbarth, S. B., and Johnson, M. M. S. 2002. "Essential Information and Support Needs of Family Caregivers." Patient Education and Counseling 47: 95-100.

Wise, K. 2002. "Caring for Our Parents in an Aging World: Sharing Public and Private Responsibility for the Elderly." New York University Journal of Legislation and Public Policy 5(2): 563-98.

From Generations Winter 2003 issue, 27(4): 49-55. © 2003 American Society on Aging

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