The financing of health care in the United States has changed rapidly over the past few years and continues to change. The predominant change has been the effort to contain costs through mechanisms collectively called 'managed care.' This article will not delve deeply into the history and definition of managed care, as other resources are available (Fagin & Binder, 1997; Harrington & Estes, 1994). Instead, the focus of this article is the ethics of managed care and, particularly, what ethical issues are posed for nurses from the perspective of an office nurse, nurse practitioner, or clinical nurse specialist in a pediatric ambulatory setting.
Under the fee-for-service payment scheme, children were able to see any health care provider that their parents selected and use any health care facility of their parents' choice. Parents could decide, usually with their provider's advice, whether or not to proceed with a specific test or treatment. Parents selected a health care provider, be it a pediatrician, pediatric nurse practitioner, family practice physician, or family nurse practitioner and made decisions about their child's health care with that provider. If a referral to a subspecialist was necessary, the provider could suggest one or more subspecialists from which the parents could choose. Any tests or procedures could be done at the facility of the parents' choosing, if the chosen provider had privileges at that facility. Freedom of choice, within certain constraints of location, was the mainstay of this system. Parents often had annual per person and family deductibles before the insurance paid for services and paid approximately 20% of all health care costs.
In the managed care scheme, parents enroll in a plan such as a preferred provider organization or a health maintenance organization. Often these health care insurance programs are the ones offered through employment, plans purchased by cost conscious employers for their employees. The health organization contracts with certain providers and facilities for discounted group rates. The parents then choose care for their child from a list of providers supplied by the plan. This may be a pediatrician, family practice physician, or pediatric or family nurse practitioner. The chosen person becomes the 'primary provider' and 'gatekeeper' to other services. Any referrals for subspecialty consultation must be approved by the primary care provider. Tests and treatments must be done at specific facilities in order to qualify for insurance coverage. There may be a copayment for office visits, tests, prescriptions, or other services but, in general, many to most of these services are completely covered by the plan. Nurses can encourage parents to review carefully the policy language in the plan prior to enrolling or before seeking services. If there is any doubt about coverage, parents should be encouraged to speak to the company directly. Often nurses in pediatric and pediatric subspecialty offices can provide parents with advice and suggest language to use when discussing care issues with the company.
On a daily basis, nurses in outpatient settings communicate with personnel employed by managed care organizations (MCOs). The nurse in the provider's office may begin the process to generate specialty referrals, call specialists' offices to plan scheduled admissions or obtain rationale for ordering tests, and works closely with the Utilization Management department regarding admissions, discharges, and follow-up care. The nurse communicates information to the families and participates in case management for the more complex cases. The nurse, in these instances, has a central role in advocating for the child and family.
Two basic ethical principles are contemplated on a daily basis as the nurse in the office works with the managed care organizations: autonomy and justice. Autonomy, through the parents' right to choose, is somewhat limited in managed care. In order to have insurance coverage and to reduce any out-of-pocket expenditures, the parents may choose only in-network providers or facilities, that is, those providers and facilities who have an agreement with their managed care organization to see their referrals for a fixed price. Parents also must have the primary care provider's approval (and the properly completed referral form) for any tests, referrals, or procedures. The principle of justice involves the responsible stewardship of limited resources by the provider. The primary provider is given the responsibility of ensuring proper expenditures by the health plan. Unlike the past, where the provider considered only the needs and preferences of the patient (or parents), managed care requires the provider to consider the needs of all the patients in the plan or 'covered lives' in the particular managed care plan. The use of resources for one patient affects the available resources for all the others. Providers' counsel to patients (and parents) may be affected by the dual responsibility. A potential conflict exists between the needs of one and the impact on many others. As in any provider-patient relationship, the needs of the patient are identified. As gatekeeper, the primary provider decides what referrals, if any, are indicated. Considering the patient's best interests, the provider informs the parents of the situation (examination and test findings, diagnosis, or need for further information) and makes recommendations.
Working in a managed care environment requires diligence and advocacy by nurses on behalf of their pediatric patients. Consider the complexity of the following case example:
An infant with a brachial plexus injury (Erb's palsy) is seen for routine health maintenance by a pediatric nurse practitioner in a health maintenance organization (HMO). After an initial evaluation by a pediatric neurologist in the newborn period and the prescribed occupational therapy, follow-up by the pediatric neurologist is requested. The nurse practitioner authorizes the referral and the infant is reevaluated by the subspecialist.
The parents have investigated treatment for Erb's palsy and are convinced that surgery performed in a distant state offers the most hope of recovery for their child. The subspecialist concurs and documents his support for the family to be treated by this nationally known, but out-of-plan, surgeon in a letter back to the nurse. The nurse practitioner (PNP) and associate physician must decide if the referral for out-of-plan treatment serves the interests of the patient as well as the interests of all other patients in the same plan. If the parents were in a fee-for-service plan, prior authorization might be required, but they would not necessarily be limited to a specific network of providers. In this family's HMO, they are limited to a network of providers who have arrangements with the HMO to see referred patients. If the child was treated by a local surgeon who is in the network, the cost to the HMO would be much less than if the child were treated by the out-of-plan surgeon.
The parents and the pediatric neurologist, however, see a qualitative difference between the local surgeon and the out-of-plan surgeon who is a national expert in this particular type of surgery. The nurse supports the parents' decision and, acting as their advocate, sends a request to the medical director to authorize an out-of-plan referral. The nurse is able to reason that the cost-benefit ratio favors out-of-plan treatment. Reducing the likelihood of disability will save the HMO from increased costs in terms of subspecialists' treatment, therapies, adaptive equipment, and any related morbidity over an extended period of time. Reduced health care costs for this one patient will benefit all other patients in the plan.
The MCO medical director denies the request and views the proposed treatment as 'experimental' because no double-blind, controlled trials have been conducted. The PNP then faces another complex decision: Should she inform the family that the request was denied and that they must bear the costs of the surgery, or should she appeal the decision? Does she risk unpleasant consequences in terms of loss of year-end bonuses, salary, or benefits increases? Might she be dismissed from the health care plan for incurring a huge expense to the plan? In fulfilling her ethical obligation to advocate for her patient (honoring the patient's autonomy) and balancing the benefits to both the patient and all other patients in the plan (justice), the PNP seeks authorization for the proposed surgery.
The PNP has an ethical obligation to appeal the decision. The PNP contacts the pediatric neurologist's office to inform him of the decision and to seek further assistance in formulating the appeal. This pediatric neurologist has a clinical nurse specialist in the office who contacts the nurse in the out-of-plan surgeon's office. That nurse give assistance by providing additional documentation on the proposed procedure. Three nurses, committed to their young patient, work together to obtain services.
In cases such as this and others, nurses can provide the family with additional resources, such as state services for children with special needs, local Easter Seals agency, and philanthropic groups who support the needs of children. In some plans, a case manager may be assigned. Case managers are often nurses who help the family find the most appropriate care within the available resources and assist in judicious management of referrals for comprehensive care. Whether it is the PNP, the nurse in the specialist's office, or the case manager, nurses are involved in working for, with, and through managed care to serve their patients and families. Much of the responsibility for decisions fall to the physician and the advanced practice nurse, but nurses in the outpatient office often facilitate the decision-making through their relationships with other nurses, the child, and the families.
Caution with the use of diagnostic labels. Diagnoses for some conditions, such as autism, pervasive developmental disorder, or Asperger's are often tentative at the initial evaluation and become clearer over time. A general description of the child's functioning, or primary complaint, is used as the working diagnosis such as developmental delay. Although the possibility of the other diagnoses exist, to use them prematurely may affect the benefits the child receives from the MCO. Approval for diagnostic testing or therapy services may be denied if the medical reviewer determines that the condition falls under the 'Mental Health' benefits, rather than major medical benefits. Parents are usually not aware of the limitations for mental health services in their policy until they attempt to secure certain benefits. Upon receiving the letter denying coverage of those benefits, parents call the pediatric office in search of assistance in appealing the denial. The task of composing the letter of appeal often falls to the nurse (or a case manager, if available). Sometimes the language of the policy is vague and subject to interpretation. A carefully constructed letter that documents the symptomatology, working diagnosis, recommendations, treatment goals, and plan for re-evaluation is essential for the appeal and most often is successful.
Additional data may be requested by the MCO, such as etiology, date of onset, and previous treatment. At first glance, the answers are easy to provide, but at closer inspection, are deceivingly so. For example, a child with attention deficit disorder (ADD) is diagnosed at age 8. The etiology is unknown, but it is likely that there is a genetic component as well as an environmental one. Would the date of onset be birth or age 8? If the child displayed attention problems in preschool, repeated kindergarten, and the primary provider noted specific recommendations for behavior management in the medical record, but the child was not medicated for ADD until age 8, has the child received previous treatment? Is the purpose of the questions intended to deny coverage for a preexisting condition? A well-meaning nurse who completes the form believing that the answers are accurate may have misinterpreted the intent of the questions and, therefore, created a problem for the family to obtain coverage for their child.
Another example of problematic truth telling may be regarding genetic testing information. Parents have expressed concern on the future effects of genetic testing results on their child's coverage. It may be that the family chooses to go out-of-plan and privately pay for information that they wish to keep confidential. The nurse has an ethical obligation to be truthful and a legal duty (as delegated by the physician or specialist) to respond to the MCO's request for information. In these times of tenuous health care coverage, ambulatory office staff should thoroughly understand the processes for releasing information and the ramifications of doing so. It should be noted that the American School Health Association plans to release a document in the coming year regarding the ethical dilemmas involved in the confidentiality of student records (Rubin, 1999). Bosek (1999) has discussed these issues regarding genetic testing liabilities.
Gag clauses. In managed care, some contracts between the insurance company and the provider require that the provider not discuss benefits that are not available, the so-called 'gag clause.' Although there have been some legislative initiatives to prevent MCOs from putting gag clauses in their contracts, not all states may have this protection. Gag clauses undermine the trust relationship between the provider and patient, and present a conflict for the provider between loyalty to and advocacy for the patient and fidelity to the MCO contract. Whether or not there is a gag clause in the contract, discussion of appropriate treatment options should occur. The determination of what is 'appropriate' treatment, however, may be debatable. The Clinton Administration supported the Health Insurance Bill of Rights, Senate Bill 1890, in the 105th Congress. This bill, if passed, prohibits restriction of information to patients regarding all appropriate care options.
Marginal and futile treatment. The manner in which marginal and futile care are viewed has also changed under the managed care system. In the past, patients may have been treated for extensive periods with highly technological or expensive treatments that had little or no chance of changing the condition. With a look at resource allocation, such treatment would now be given second thoughts. In general, when prescribing treatment, the primary care provider or specialist follows the standard of care. When a patient's condition is refractory to the standard treatment, other options are explored. Treatment that offers a slim chance of cure (e.g., marginal treatment) when there are no other curative treatment options may appeal to parents. From the perspective of the parents, a marginal treatment offers hope, albeit slim, but no treatment offers no hope. As a steward of resources, the provider may view marginal treatment as inappropriate because it is likely to be ineffective in achieving the treatment goal of cure or even palliation (Palliative treatment, intended to relieve symptoms but not expected to cure, is often used, appropriately so, in the end stage of conditions). Futile treatment, similar to marginal, is treatment that is likely to be ineffective and may be harmful.
The following case example illustrates marginal and futile treatment under the managed care system:
A child with a brain tumor has not responded to the standard chemotherapy. The PCP has referred the management of the child's condition to a pediatric oncologist. The oncologist explains to the parents that the child has not responded, and they ask for options. One option is to include the child in a new chemotherapy protocol under a compassionate plea exemption. The child's condition and failure to respond to earlier treatment excludes the child from entry criteria for all other chemotherapy protocols. The MCO views the new protocol as experimental, since it is not the standard of care for this type of brain tumor. Is it ethical for the oncologist to offer the parents this option? Is it ethical for the MCO to deny parents this option? What if the child's condition deteriorates and the parents request life-sustaining technology, such as a ventilator and intensive care, to keep the child alive? The treatment may prolong the child's life by days, but will not prevent the child's eventual death. In the sense that the treatment cannot cure the child's brain tumor, nor prevent the child's death, it is futile treatment. If the parents have a goal of keeping the child alive for as long as possible, the treatment is not futile to them.
Futile treatment has been defined as treatment 'which will be neither medically effective nor personally beneficial' (La Puma & Schiedermayer, 1996, p.151). An ethical dilemma arises between futility in terms of the reality of the situation and the parents' goals to keep looking for a cure. In managed care, the issue of resources should not be the deciding factor. Yet, for the plan, this may be a black and white issue, covered or not covered. The nurse can assist the family with mutual goal-setting in the terms of pain relief and symptom alleviation. The limits of medical treatment should be in terms of ethical caregiving and comfort rather than MCO-imposed limits, and the covenant with the patient and family should be the hallmark of the provider-patient relationship. Taylor (1995) reminds us that the heart of nursing is patient advocacy and suggests mediation techniques. In this case example, the nurse working with the oncologist can play an important role in providing and reinforcing information, assessing the needs of the child and family, and being a resource for the family's coping and support.
The decision whether to support parents' request for marginal and/or futile treatment is complex and thorny. The nurse is faced with the ethical tension of advocating for the family's needs to keep trying, the child's needs for comfort care, and the insurance company's needs to limit payment for unproven treatments (The reader is referred to a more thorough discussion on medical futility in a new book by Rubin ).
In the new managed care environment, nurses play a major role in managing documentation and services. Nurses are providing information from medical records with appropriate consent, providing information regarding a child's condition and treatments, helping families formulate treatment goals, and negotiating and supporting children and families through the health care system. Managed care requires a vigilance to balance the ethical obligations to individual patients while being stewards of resources. Although the responsibilities differ between the pediatric nurse practitioner, clinical nurse specialist, office nurse, and case manager, nurses need to be aware of the ethical issues posed by caring for children and their families within the context of managed care health care financing. Honoring autonomy through facilitating informed decision-making, while being responsible stewards of health care resources, is a huge but worthwhile nursing endeavor.
Bosek, M.S.D. (1999). Commentary on genetic testing of children: Maintaining an open future. Pediatric Nursing, 25(1), 66-68.
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Pediatric Ethics, Issues, & Commentary focuses on exploring the interface between ethics and issues in clinical practice. If you have suggested topics or cases for consideration in the column, please contact Anita J. Catlin, DNSc, FNP; 230 Hillside Avenue, Napa, CA 94558; (707)226-9002.
Teresa Savage, PhD, RN, is a Post-Doctoral Research Fellow in Primary Health Care/Social Ethics, Department of Public Health, Mental Health, and Administrative Nursing; and Adjunct Assistant Professor, Department of Maternal-Child Nursing, University of Illinois at Chicago College of Nursing, Chicago, IL.