November/December 2016 Issue

Adoption Issues in Health Care Settings
By Deborah H. Siegel, PhD, LICSW, DCSW, ACSW
Social Work Today
Vol. 16 No. 6 P. 22

Language matters. Social workers are becoming sensitized to adoptive families in health care settings.

"What just happened?" a hospital social worker, confused and perturbed, asks his supervisor. "I mentioned to that patient on the chemotherapy floor that I'm an adoptive parent too, and she responded angrily to me, offended. What's going on?"

Many social workers may understandably assume that when adoption issues appear in health care settings, it is most likely in obstetrics, gynecology, and pediatrics. In fact, however, adoption issues frequently occur in all aspects of health and mental health care throughout the life cycle, and can touch upon fields as diverse as dermatology, geriatrics, and orthopedics. Adoption is a lifelong journey, not an event, with issues that may emerge in any in- or outpatient setting. This is true not only for the person who was adopted but also for the adoptee's original/first family of birth, adoptive family, and the complex extended family system composed of all birth and adoptive family members across the life span, whether or not those people know one another or have contact with each other.

Health and mental health care providers, including social workers, who understand adoption are better positioned to respond sensitively and helpfully to adoption issues when they emerge in health care. One of the challenges providers face is that adoption issues, while emotionally charged and highly medically relevant, often appear in indirect ways.

The purpose of this article is to provide examples of how adoption issues may present in health care settings, identify some of the core emotional issues and normative developmental challenges that health care providers may encounter with patients and clients whose lives are touched by adoption, how providers' language about adoption reflects and shapes patients' health care experiences, and guidelines for "adoption competent" practice in health care settings.

Language, Assumptions, and Misconceptions
While there are common issues that cut across all types of adoption, each type also presents unique challenges. For example, children adopted from an Eastern European orphanage, or at birth within the United States, or after 12 foster placements in the public child welfare system come to adoption with different histories. Health care providers, including social workers, may have assumptions and beliefs about the child's experiences that affect what they say to their patients. Providers' perceptions and language may unwittingly distress or alienate the patients they intend to help.

For instance, a provider might say to a child who lived destitute and victimized on the streets of a developing country, "You're so lucky to be adopted." This may be a well-intentioned statement designed to be supportive. Yet the child might instead experience the provider's statement as minimizing and dismissing the child's traumas, thus alienating and further isolating the child emotionally, leaving the child less able to communicate health concerns clearly.

Original parents who have terminated parental rights, when providers ask, "How many children do you have?" may feel put off, unsure of how to answer; the original parent may wonder, "Do I report only the number of children I'm parenting, or do I tell that I lost a child to adoption too? Will I be judged if I disclose that?"

A clinician, assessing a patient for severe hip pain and thinking it might have to do with birth trauma, not knowing that the patient is an adoptive parent, might ask, "Do you have any children?" When the patient answers, "Yes, two," the clinician then asks, "Were they born vaginally or by C-section?" The parent may feel offended and annoyed by the provider's assumptions.

A provider may see an adoptive parent with three kids in tow, two of whom are white and one of color; the provider, trying to be warm and friendly, says to the two white siblings, "Please introduce me to your friend here," hurting the child's feelings and showing the family that the provider doesn't get it.

These and other assumptions are reflected in language. The language commonly used in our culture when speaking about adoption can impair the patient/provider relationship and get in the way of effective communication about health concerns. For example, when the provider says to the adoptive parent, "Do you have any children of your own?" the parent may feel offended, as he considers his children by adoption as much his own as are his children by birth. When the provider asks, "Do you have any health information about your son's natural mother?" the adoptive mother may think, "What am I, unnatural? Is it unnatural for me to mother a child not born to me?"

Every time an adopted person is asked for medical history, the adoptee is faced with deciding whether or not to disclose the fact that he or she was adopted, even at times when he or she is struggling with painful feelings about his or her adoption. In each of these, and countless other examples, the provider's ability to communicate with the patient may be impaired, sidetracked by the patient's emotional discomfort and distracting inner dialogue that the provider's choice of language triggers.

Hence, it is useful for providers to be familiar with what is known as "neutral adoption language," that does not convey value judgments about adopted people or their families. An adult is not "an adopted child," but rather a grown-up who "was adopted as a child." An original or first parent is just that, not the "real" or "natural" parent. An adoptive parent has a child by birth and one by adoption, not "an adopted child and one of his own." Original parents do not "keep the baby" or "give the baby up for adoption"; instead they "choose to parent" or "make an adoption plan." The preferred alternative language is free of pejorative implication, and is proactive and affirming.

Providers may believe, incorrectly, many commonly held misconceptions, such as these: an infant experiences little, if any, sense of loss when adopted at birth; original parents put the adoption experience behind them and forget about it as they move on with their lives; adoption cures the losses embedded in infertility; adoptees who unambiguously love their adoptive families feel less need for information about their genetic origins; or that sealing original birth certificates in perpetuity is good for families. There are many other widely held but erroneous beliefs about adoption's impacts on its participants.

Core Emotional Issues
Adopted people, their original parents and relatives by birth, and their parents and relatives by adoption typically experience similar core emotional themes even though each person experiences these themes differently. The themes include, for example, loss; grief over losses that others often dismiss, minimize, or fail to recognize; stigma or shame; a sense of worthlessness, guilt, or identity confusion; loss of control over decisions that profoundly affected oneself; existential bewilderment over, "Why me?"; and anger over life's unfairness. These feelings may be triggered by medical conditions, experiences in the health care system, transitioning to a new stage of life, major life cycle events, and stressors. Health care providers may unintentionally trigger these emotional issues, impairing the provider's ability to establish rapport needed to communicate effectively.
A few examples of health care scenarios will illustrate how adoption issues may present.

Medical Issues Linked With Adoption
People adopted from different countries may present with unique health issues. For instance, some intestinal parasites from the developing world can linger in an adoptee beyond the childhood years and into adulthood. A medical provider who is unaware of the adult patient's adoption history and country of birth may be unable to diagnose and treat the patient correctly.

When adopting across national boundaries, prospective adoptive parents are wise to obtain a child's medical records from the orphanage or foster home where the child resides, and seek medical advice about the kinds of care that child may need after adoption. Health care providers must decide how to word or frame information from the medical record, balancing the child's need for a safe, nurturing, forever family with the prospective adoptive parents' need for full information so they can weigh their readiness to manage a specific child's needs. Language in these situations matters in whether a child gets adopted or languishes in institutional care. The provider must decide whether the focus of attention should be the child in need of a family or the prospective parents hoping to adopt a child they feel adequately equipped to parent. This is an important clinical and ethical issue that requires honesty and finesse. It's one thing to say, "This is an extremely active child who will do best as the only child in a two-parent household," vs. "This child is likely to have major behavioral control problems, so think twice about going forward."

Due to the stigma attached to termination of parental rights (TPR), whether voluntarily or involuntarily, an original parent may not let providers know about a birth and TPR, even when that information could be medically relevant to the original parent's health and well-being. Medical and mental health issues such as secondary infertility, obesity, and trauma among people who have experienced TPR are common. Original parents in medical settings may fear being vilified, scorned, controlled, or disempowered if they disclose the TPR.

Prospective adoptive parents often pursue adoption while simultaneously continuing treatment for infertility. They might not disclose this fact to the adoption agency or health care providers, as they are concerned that doing so could bias professionals against them, since many professionals, not recognizing that feelings about infertility can last a lifetime without impairing a person's ability to be an effective adoptive parent, believe that a person must fully resolve feelings about infertility before adopting. Interventions for infertility today often have no obvious medical end point, so prospective parents and their health care providers need to communicate effectively about when it makes sense to stop medical treatment. This sort of conversation requires special sensitivity and skill. It would be misleading and factually incorrect, for instance, for a provider, seeking to be comforting, to say something like, "It doesn't make any difference whether you have a child of your own or adopt." There are ethical aspects to this issue as well, because medical providers are often paid on the basis of how many procedures they do; this may be an incentive to continue infertility treatment when the chances of success are nil.

A provider who says, "Why don't you adopt internationally? That way you don't have to deal with birth parents," does not recognize that the original parent is present in the adoptee's life even when unknown to the child, and that open adoption, search, and reunion are also possible in intercountry adoptions.

Pregnancies that result from donor egg or donor sperm are also forms of adoption, as children conceived in these ways have a genetic link to a person other than the parent who nurtures and raises them. Health care providers are less than helpful when they collude with patients in the belief that the child conceived by donor egg or sperm will have no emotional or physical connection to the donor. Anonymous donations may suit the recipient parent's fears, defenses, and preferences, but they are not in the child's best interests, as every person has a basic right to access complete information about her or his genetic heritage, and genetic history of the donor is up to date only at the time of the donation, not as the donor ages over the years; thus, potentially lifesaving information is denied the adoptee when donations are anonymous and there is no possibility of contacting the genetic parents.

Boundaries and Self-Disclosure
A nurse on a surgical floor of an acute care hospital might see in an appendectomy patient's chart that the patient is an adoptive parent. In an attempt at establishing rapport, the nurse might self-disclose, "I'm an adoptive parent, too." This effort at joining with the patient might actually upset the patient, who responds, "What is that fact doing in my medical record for all to see? That's none of your business!"
Medical advice giving is another challenging boundary issue when it comes to adoption. A patient might ask a physician or social worker, "Should I adopt this child who was conceived by rape and born to an incarcerated woman who has bipolar disorder and addiction?" Responding in a nondirective, informed, balanced way to this sort of query, and helping the patient think and feel the issue through for himself requires that the provider have considerable knowledge, skill, and self-awareness.

Access to Information
While it is standard practice to give adoptive parents all available medical information about the child they plan to adopt, of course only information known when the adoption occurs is available at that time. More information about the original parents emerges over time as the original family members go through the life cycle. As an adoptee ages, new health issues emerge, and it can be helpful for providers to have updated additional medical information about the family of birth. Providers need to make complex, sensitive decisions about how crucial this additional information would be so they can determine whether or not to suggest that the adoptee contact biological relatives for updated health information. This contact can open up emotional and family issues, particularly at a time when the adoptee is dealing with medical concerns as well.

There are instances when medical staff need crucial health information about the child's original family, and the adoptive parents have not yet told their child that he has younger siblings living with his original parents of birth, the same people who chose to make an adoption plan for him. The adoptive parents may be afraid to contact the original parents because that might upset the child and open up more contact than the parents feel ready to manage. But important medical treatment decisions may depend on the medical staff having more complete information. How much encouragement to make contact should the staff provide? Whose needs are primary—the adoptive parents' wish for secrecy, concern about upsetting the child who is coping with medical issues, or the child's need for maximally informed health care? These are complex conundrums for providers and parents to navigate.

Medical personnel may discover in the health record of a child adopted from foster care some important medical information that has not been shared with the prospective adopting parent. Should the staff share this information, or should they continue to withhold it, as they see the disclosure as a job for the child welfare agency that is facilitating the adoption? Staff are concerned that releasing the information might jeopardize the adoption, but they are also concerned that the prospective parents might adopt a child they do not feel equipped to parent.

Medical Social Worker's Role Ambiguities
Interprofessional collaboration and teamwork are essential components of medical education. It can be difficult for a medical social worker to decide how direct and assertive to be with team members in educating them about adoption issues. If, for example, the social worker overhears a physical therapist say to a child, "You're such a great kid. How could your real mother have given you away?" how and when should the social worker respond to that colleague? What, if anything, should the social worker say to the child about the comment?

Guidelines
Fortunately, there is a growing literature on "adoption competent" policy and practice to guide decision-making about the above issues. Principles and guidelines include the following:
• Consider the child's needs first and foremost. The purpose of adoption is to provide safe, nurturing forever families for children, not to find children for families.
• Honor adoption participants' self-determination and autonomy. Avoid coercion and paternalism.
• Tell the truth.
• Avoid secrets and deception. Do not seal original birth certificates. One has a basic human right to access all information about oneself.
• Prospective adoptive parents must be given all available information about the child they are considering adopting.
• Preserve the child's connections with his or her family, country, ethnicity, race, and culture of origin.
• Keep the door open to the possibility of contact between the child and the original family of birth. Keep the trail warm. At times when direct contact is emotionally or physically unsafe for the child, adoptive parents can stay in touch with original family members on the child's behalf, sustaining the possibility of contact in the future.
• Use nonjudgmental language when speaking about adoptees, original parents, and adoptive parents. Treat all members of the extended family of adoption, including original parents, with respect.
• Maintain a strengths-based, nonpathologized view of original parents, adopted people, and adoptive parents. Avoid stigmatizing.
• Be aware that language reflects and creates bias. Use neutral, adoption-sensitive language.
• Use a trauma-informed approach, as many, if not most, people whose lives are touched by adoption have experienced trauma in their adoption-related experiences.

Social workers who follow these guidelines and are well informed about adoption issues are better positioned to offer patients quality care. These social workers in health care are trauma informed, focus on the needs of the adopted person, convey respect for and seek to empower and educate all participants in the complex extended family system formed by adoption, and work to change policies and laws that ignore, dismiss, minimize, or fail to meet the needs of adoptees and their birth and adoptive kin.

— Deborah H. Siegel, PhD, LICSW, DCSW, ACSW, is a professor in the School of Social Work at Rhode Island College, a clinician specializing in adoption issues, an adoption researcher, and an adoptive parent.