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DENVER – A woman who has accused a clinic of denying her fertility treatments because she is blind testified yesterday that she felt humiliated when doctors refused to help her become pregnant.
Kijuana Chambers, 33, testified at the start of her trial in federal court that doctors at the Rocky Mountain Women’s Health Care Center performed four rounds of artificial insemination in 1999 but stopped when she refused to hire an occupational therapist to evaluate the safety of her home.
Her lawsuit seeks unspecified damages, claiming that the clinic violated the Americans with Disabilities Act.
Miss Chambers said she always wanted a child, but it had seemed impossible because she is a lesbian. She found another clinic to do the procedure and gave birth to a daughter, Laurina, on Jan. 1, 2001.
Introduction
Family building is seldom a straight-line march to the finish, even for those fortunate individuals who avoid a detour into the ethical and legal minefield of assisted reproductive technology (ART). The landscape has become ever more rugged, notably complicated by, among other issues, third party reproductive collaboration, accessibility to care, protections against exploitation of women, and concerns for the safety and well-being of children and potential children. The client is influenced by cultural mores and religious beliefs, as well as by general societal pressure, but also by more practical concerns such as affordability and accessibility of medical care, feasible aspects of participating in these arrangements and the like. Further, the client selects courses of action based not only on personal choice, but also upon the integrated influences of the surrounding local community, and in some sense, through the input of the larger global society. Most importantly, intended parents and their third party helpers often lack fundamental information about the parties’ status to any child created – who is a parent, what rights the respective parties possess, and how those rights are protected. Unless appropriately addressed, these issues may contribute to misunderstandings, misperceptions and confusion, all of which may be laid at the feet of the fertility counselor.
Few other areas of clinical counseling are so intimately aligned with the law. The two disciplines grew in parallel tracks as the needs within ART developed. Sometimes, the intertwining provides for affirmative action and clear resolutions. Other times, the lack of qualified assistance from one or both fields is glaring, or simply, the “perfect storm” of circumstances arises and the need becomes excruciatingly apparent. This chapter will guide the fertility counselor in recognizing risky situations, analyzing them with a critical eye, practicing within the parameters of competence, ethics and legal sound stricture, and applying best practice principles.
Case discussion: “Blind women sues fertility clinic”
While no professional wants to practice looking over the shoulder in anticipation of legal action, certain cases do scream, “Look out!” We offer the opening case as one example of many that require a thoughtful approach and a strong adherence to legal, ethical and good clinical principles. The analysis, while tailored to the particular case, is applicable to other situations with complicated fact patterns and troublesome, sometimes unclear, issues.
This was a case where a legally blind woman sued several physicians and their practices for discriminating against her by refusing to provide infertility services because of her blindness. Further, she claimed discrimination because she was required to provide proof she was fit to be a mother after the defendant had provided those services previously without these assurances. Ultimately, evidence established that the plaintiff’s blindness was not a motivating factor in the decision to defer treatment until medically appropriate concerns about her ability to care for the child were resolved. The patient also had a history of clinical depression, was emotionally abused as a child and subsequently demonstrated problems interacting with others. The defendants were able to show that Ms. Chambers consistently perceived that people were always trying to prevent her from following her plans and making her own choices. She admitted to jumping to conclusions about other’s desires to interfere with her wishes and that she had a hard time understanding people’s true intentions. She also dealt inappropriately with authority figures. A psychiatrist who examined her testified that she had traits of borderline personality disorder as well as major depressive disorder and narcissistic personality disorder [2].
The case is illustrative of a few of the myriad legal issues that a mental health professional (MHP) might consider in working with a patient who is seeking treatment for infertility. It highlights the impact of the law on the delivery of mental health services attached to reproductive medicine clinics. While most cases the MHP will face are not nearly as complex, it points out the multilevel nature of our work and the need for collaboration between knowledgeable professionals on both sides of the law–mental health axis. For example, this case requires a working knowledge of the Americans with Disability Act (the “ADA”) [3]. Under the ADA, a disability means a physical or mental impairment that substantially limits one or more of the major life activities of an individual; this includes a disability that is reflected in a person’s record, or that individual being regarded/perceived as having such an impairment. Employers may not discriminate against such persons based on their disability. An employer is defined, generally speaking, as an entity engaged in business affecting commerce and having 15 or more employees. Much of the act applies to discrimination in the workplace, but the law also applies to discrimination in housing, education and access to public services, including healthcare.
When a healthcare discrimination claim is filed by a qualified individual with a disability – that is, failing to offer health services in an accessible manner – courts are likely to view the dispute as one that falls within the ADA’s remedial scope. Assuming that a plaintiff can show conduct considered discriminatory under the ADA, and a defendant entity cannot prove an affirmative defense – that is, cannot bring its conduct within a legally permissible exception to the rule of nondiscriminatory conduct – the ADA provides a remedy. In situations involving accessible care, the major social challenge is how to create remedies that foster accessibility without placing an undue burden on the program. An undue burden would be a remedy that forces the provider to make a fundamental change in its services.
And, all of these factors must be considered before evaluation of the issues around the patient’s infertility!
W. D. Schlaff, MD, one of the physicians involved in this case routinely instructed his staff “don’t do anything different for any case.” [Oral communication, February 2014, Professor, Department of Obstetrics and Gynecology, Thomas Jefferson University, Philadelphia, PA.] In other words, if we require a psychological evaluation for heterosexual couples who wish to use donor sperm to conceive, then we apply the same standard to anyone wishing to use donor sperm. From an ethical point of view this guidance addresses the American Psychological Associations principles of beneficence, nonmaleficence, justice and respect for people’s rights and dignity. (For an in-depth discussion of this topic, see Chapter 22.) It also gives the fertility counselor a clear path to follow when other factors such as personal feelings might come into play.
Ms. Chambers’ combined history of abuse and diagnosis of several significant mental disorders gave clear substantiation for the treatment team to tread cautiously in this case. On the face of it, her blindness seems the least of the issues to be considered in determining whether or not fertility treatment was appropriate. However, because she was blind, an entirely new level of scrutiny was required, including the consideration of the aforementioned laws governing individuals with disabilities.
Lynn S. Blyth, PhD, the psychologist, who was part of the treatment team at one of the institutions, was involved in not only evaluating the patient but also working with the staff around the unusual challenges presented by her. She noted that during the initial donor sperm consult the patient had a “chip on her shoulder.” [Oral communication, February 2014, Psychologist, Advanced Reproductive Medicine, University of Colorado, Denver, CO.] She had recently moved to Denver for a program that trained blind individuals in self-sufficiency skills and was living in a supported living arrangement. The team approved her to go forward because she originally had good ideas about child management and seemed to understand the medical issues involved in getting pregnant. However, as time went on, she never became self-supporting and her social support network dwindled. It became clear that she had difficulty reading the ovulation predictor kit and requested the nursing staff to do this task for her. The nursing staff, normally helpful and generous, felt burdened and mistreated due to the patient’s demeanor towards them. They began to wonder how the woman would be able to care for a baby if she was unable to take care of these relatively less complicated tasks. The psychologist recalls acting as a support person for the nursing staff during this time.
The psychologist ultimately became a case manager of sorts, to the point of contacting various agencies for the blind in hopes of creating a resource team for the patient, but found nothing that would be useful. In fact, she was told that there was “no way” resources of the extent necessary would be available. It was at this juncture that the treatment team eventually decided to terminate treatment. When the lawsuit was brought against the clinic, the psychologist was deposed and noted that she felt confident that her documentation would corroborate her input into what appeared to be a reasonable decision to terminate care. The defendants were ultimately cleared of any wrongdoing [4].
A multidisciplinary approach to crisis management: the fertility counselor’s role
Inherent in the highlighted case, but also typical for many situations in fertility counseling, are medical, psychological, nursing and legal issues, all of which influence the final outcome. Collaboration among the various professionals is the best plan to address the interests of the medical practice, the concerns of the professionals involved, and the safety, well-being and equitable treatment of the patient. Assigning possible resolutions and treatments according to the scrutiny suggested below should provide some protection to all the stakeholders. In the development of a team approach, the following guideposts should be in the forefront:
Professional standards of practice for counselors
Professional competency provides the basic theoretical approach of fertility counseling in the context of the law. Competency involves a collection of skills, abilities, habits, character traits and knowledge a person must have in order to perform a specific job well. An individual performs effectively within the professional construct when he/she possesses the skills, abilities and knowledge that constitute competence. Competency is based upon knowledge, training and standards that a profession has identified are necessary to perform a job effectively. These standards, with some variations, provide the bedrock for licensing, credentialing and discipline-specific regulations, both in the USA and abroad. Each fertility counselor is responsible for compliance with the requirements in the jurisdiction of practice.
Credentialing and licensure
In the United States, psychiatrist, psychologists, social workers, psychiatric nurses, counselors and marriage and family therapists are credentialed separately, typically under distinct legislative titles. State statutes provide for a licensing entity that specifies licensing and certification requirements, and enumerates prohibited actions, as well as penalties, for violations of the code. Standards of practice and ethical guidelines are typically promulgated by professional associations, and in some countries, are the basis for licensure. Once adopted by the organization, they may be viewed as the legal standards against which practitioners in each category may be judged. Of interest in the United States are the American Psychological Association’s (APA) Ethical Principles of Psychologists and Code of Conduct [5], the National Association of Social Workers (NASW) Code of Ethics [6], and the National Board for Certified Counselors (NBCC) Code of Ethics [7]. Also pertinent may be: the American Association for Marriage and Family Therapy (AAMFT), Code of Ethics; the American Psychiatric Association (the APA), Ethics Primer of the APA, Opinions of the Ethics Committee on the Principles of Medical Ethics with Annotations Especially Applicable to Psychiatry [8]; and the American Psychiatric Nurses’ Association (APNA), Scope and Standards of Psychiatric and Mental Health Nursing [9].
In countries other than the United States, psychiatrists and psychologists are regulated separately from other MHPs, and systems for regulating social workers and other types of counselors are not uniform. For instance, statutory registration systems are used in some Canadian provinces, and in Japan, Hong Kong, Israel, Germany, France, South Africa and the Netherlands. England, Wales and Scotland regulate the training of social workers. In contrast, Australia allows social workers to self-regulate, based on an agreement between the profession, educators and employers. The majority of registration systems operate in tandem with a competency evaluation and a disciplinary procedure, and registration is defined by statute. In the United Kingdom, credentialing of fertility counselors is available through the British Infertility Counselling Association (BICA) and the British Fertility Society (BFS), but is not required [11]. The Infertility Counselling Award is a recently developed joint project of BICA and the BFS. Counselors in the reproductive and assisted conception field may earn this professional designation by completing workshops and other training seminars and by demonstrating the expected competency in professional conduct.
HFEA, in 1991, recommended that the minimum qualifications required for a counselor be a certificate of qualification of Social Work; an equivalent qualification recognized by the Central Council of Education and Training in Social Work; or an accreditation by the British Association of Counselling or Chartered Psychologist status. However, controversial new guidelines in 2009 excluded social workers from the list of “acceptable counseling professionals” [11].
Australia requires that working psychologists comply with registration requirements of the State and Territory Psychologists Registration Boards. Generally, all states or territories require completion of a four-year course of undergraduate study in psychology, and two full-time, additional years of postgraduate work or supervised fieldwork as a probationary/conditional registered psychologist. Social workers are expected to comply with the ethical requirements of state regulatory bodies, such as the South Australian Council on Reproductive Technology, established as a function of the Reproductive Act of 1998 [12].
Professional guidelines for the area of practice
The American Society for Reproductive Medicine (ASRM) Practice Guidelines, while mostly applicable to medical providers, are at least arguably applicable to fertility counselors and attorneys, as practitioners in both professions are accepted as members of the organization and both maintain separate professional groups within ASRM. In the absence of other established guidelines, these recommendations may be legitimately viewed as standards of care against which professional behavior is evaluated and judged. For fertility counselors, the specific standards of practice for each discipline, as well as the bylaws and guidelines of pertinent professional groups within parent organizations for reproductive medicine are critical (e.g., the Mental Heath Professional Group [MHPG] of ASRM). Since the MHPs have a separate professional group within ASRM, the guidelines established through this body do speak specifically to fertility counselors, as do those within ESHRE and its Psychology and Counseling Special Interest Group. Another similar organization is the International Infertility Counseling Organization (IICO). One of the goals of IICO is “…to establish professional standards and guidelines for the psychosocial care and treatment of infertile patients” [13]. The guidelines established by these professional groups fall short of enforceable rules, but nevertheless provide the framework for professional standards, competency, and possibly credentialing for fertility counselors.
Other professional pronouncements
Both ASRM and ESHRE Ethics Committee Opinions are available to members and are printed in the respective society’s journals. For example, and of particular interest when considering the Chambers case discussed above, is the ASRM Ethics Committee Opinion regarding Child Rearing Ability and Provision of Fertility Services [14] which recognizes the potential moral responsibility of providers to consider the interest of a future child. The Committee concluded that it may be permissible to turn a fertility patient away if the provider reasonably concludes that patient is likely incapable of safely raising a child. Accordingly, it is possible to withhold services on the basis of well-substantiated judgments that patient cannot provide care for a child and does not have an adequate support system to assist him/her. (The Opinion was published after the Chambers case and was not considered in the resolution of the matter.) These types of considered and thoughtfully written opinions provide justification for professional decisions and, should a dispute arise, may provide a basis for defense of those actions.
Laws affecting outcomes for reproductive technology patients
While the fertility counselor is not expected to know and provide information about state and federal law, it is important to recognize that clients may be contemplating arrangements that are restricted or prohibited in their state or country. Acting in contravention to those laws can lead to unintended and highly problematic situations. Advising clients that such laws may exist and apply to their situations, and a consultation with an experienced reproductive law attorney is indicated, is both helpful and appropriate.
General principles of sound business practice
These drive institutional policy and procedure and should be part of the decision-making matrix. It is best practice to develop uniform and consistently applied formal policies for all parts of the fertility counseling practice: financial, process and practical. While counselors who are employed by institutions will be expected to adhere to institutional policies, independent practitioners should employ the same practices as may pertain to their individual businesses. For example, providers in the USA who are in solo practice must still adhere to the guidelines promulgated by the Health Insurance Portability and Accountability Act (HIPAA) [15] and provide policy statements to clients. In addition, anyone who uses a credit card processing machine to collect fees is required to complete a Payment Card Industry (PCI) compliance evaluation every year, adhere to the guidelines developed by the Security Standards Council and document such adherence [16]. As a general statement, informal policies invite misunderstanding and are typically indefensible in a lawsuit. (The recommendations of the Ethics Committee in its child-rearing statement acknowledge this principle.) To protect itself and, if part of a larger group, then to make certain that all members of the team are reliably following clear standards in a predictable manner, the practice should ensure that:
Written and clear policy and procedures are maintained.
Such policies are applied uniformly, and exceptions are not entertained without substantial and compelling reason and further review, preferably by an outside entity.
Any evaluation is customary and usual and part of a standard protocol.
Patients are informed at the outset that interviews may be conducted with an eye toward evaluating the intended parent’s ability to safely participate.
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