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C 2002) Journal of Genetic Counseling, Vol. 11, No. 5, October 2002 (°

Approaching Complex Cases With a Crisis Intervention Model and Teamwork Julianne M. O’Daniel1,3 and Deborah Wells2

Patients referred for genetic counseling may be in a state of crisis, feeling as though they are incapable of making decisions about the management of their pregnancy, genetic testing options and/or life planning issues. The role of the genetic counselor is to assist a patient through this crisis state by increasing the patient’s understanding and by helping to facilitate decision making and adjustment to those decisions. In this paper we present a clinical genetic counseling case that was complicated by numerous medical and psychosocial issues. The wide scope of this case required the involvement of both a prenatal and a medical genetic counselor. Working as a team we utilized a crisis intervention model. Our counseling focused on identifying and isolating the issues, providing factual information, setting a time frame for decisions to be made, and encouraging social support and emotion-focused coping strategies. KEY WORDS: genetic counseling; crisis intervention; psychology.

INTRODUCTION Advances in our understanding of genetic disease and the availability of many genetic testing options often result in increasingly complex situations for both patients and genetic counselors. Frequently, genetic counselors uncover multiple issues warranting exploration with the patient. In this paper we present a case involving numerous issues requiring involvement of both a prenatal and a medical genetic counselor, Deborah Wells and Julianne O’Daniel, respectively. We used a crisis intervention counseling model that we previously presented at the National 1 Division

of Genetics, Maine Pediatric Specialty Group, Portland, Maine. of Maternal Fetal Medicine, Duke University Medical Center, Durham, North Carolina. 3 Correspondence should be directed to Julianne O’Daniel, Maine Pediatric Specialty Group, 887 Congress Street, Suite #320, Portland, Maine 04102; e-mail: [email protected]. 2 Division

369 C 2002 National Society of Genetic Counselors, Inc. 1059-7700/02/1000-0369/1 °

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Society of Genetic Counselors 2000 Annual Education Conference (O’Daniel and Wells, 2000). Here we elaborate upon the aspects of the case that led us to seek out and utilize this crisis intervention model.

BACKGROUND SA4 was a 34-year old G4P1021 pregnant female of African American/Native American ancestry with a 4-year college education. She was seen in the Fetal Diagnostic Center at 18 weeks gestation for a routine level II ultrasound that revealed the presence of choroid plexus cysts. SA was counseled regarding the significance of this finding and offered Maternal Serum Screening. These test results were abnormal giving an increased risk for Down Syndrome of 1:56. The patient initially declined amniocentesis to investigate the possibility of aneuploidy due to an intense fear of needles. During that prenatal counseling session, SA informed the genetic counselor of her desire to pursue Huntington disease (HD) testing for the fetus based on family history. The patient’s mother reportedly passed away due to HD when SA was a child. SA did not live with her mother prior to her death, and she was admittedly unfamiliar with the genetics and the clinical manifestations of HD. The prenatal genetic counselor referred her to the Medical Genetics clinic, where an HD testing protocol was in place. The protocol included evaluations by both a psychiatrist and neurologist specializing in movement disorders prior to collecting a blood sample for molecular HD testing. The patient met with the geneticist and the genetic counselor in the Medical Genetics clinic to learn about HD and the testing protocol. She reported learning of her mother’s diagnosis of HD from a cousin at her mother’s funeral over 10 years ago. She had no medical records to confirm this diagnosis and had no contact with her maternal family members. The genetic counselor informed SA that she would have to complete the HD testing protocol for herself in order to have the option of prenatal HD testing on amniocytes. She was presented the option of coordinating her HD testing with the fetus’ so that the prenatal testing information could be presented to her in a timely manner. The implications of prenatal testing for an adult onset disorder were discussed in full including possible insurance and employment discriminations as well as the potential for emotional and psychological stress from knowledge of an impending disease in both the parent and child. SA informed both the prenatal and medical genetics counselors that she was certain she would not continue a pregnancy known to be affected with Down syndrome, but that she was unsure whether she would not continue a pregnancy diagnosed with HD. SA informed the prenatal counselor that she wished to undergo an amniocentesis due to her concerns about having a baby with Down Syndrome. 4 Initials

have been changed to protect patient privacy.

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In addition, SA indicated her wish to retain cells from the amniocentesis for the possibility of prenatal testing for HD should she decide to continue the testing protocol herself. Multiple genetic counseling appointments and phone conversations with SA revealed behaviors possibly suggestive of HD. We noted that she was very anxious, with scattered thought processes and frequent forgetfulness, requiring constant review of information. She was fidgety with almost constant movements. SA acknowledged her long-standing problems with anxiety. She did not, however, recognize either her often erratic thought processes or her frequent subtle movements. SA attended all appointments alone, and she reported no support system locally, other than her stepmother with whom she was not close. Her closest family and friends lived in another state. She was raised by her father until his death when she was a teenager and subsequently was cared for by her stepmother. SA was the single parent of a 10-year old whose father had committed suicide. The father of her current pregnancy was no longer involved with SA and had no interest in the pregnancy. SA had no permanent employment and no health or life insurance other than Medicaid for the duration of the pregnancy. COUNSELING ISSUES This case posed numerous genetic counseling issues. Table I contains a summary of the major issues that we explored with SA. While we have separated these issues into three categories, medical issues, psychosocial issues, and ethical issues, there is considerable overlap among them. COUNSELING APPROACH The goal of each genetic counseling relationship with SA was identical—to help her make informed, autonomous decisions. Due to the multitude of issues involved, however, we realized the need for a strategy to guide our service provision. SA was clearly overwhelmed, and in her vulnerable state she likely was easily influenced by others. We recognized SA’s underlying vulnerable state and the high level of current stressors. We determined that we needed to simplify the necessary decisions for SA so that she could assess them in order to make her own choices. To do this, we separated the issues, isolating the pregnancy-related issues from the self-related issues. We contracted with SA to address all pregnancy-related issues to the prenatal genetic counselor and all self-related issues to the medical genetics counselor. SA then was able to formulate priority lists with each counselor focusing on specific issues rather than trying to consider the whole picture at once. With the client’s permission we kept each other apprised of new issues that arose, or decisions that were made.

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O’Daniel and Wells Table I. Genetic Counseling Issues

Medical issues

Psychosocial issues

Ethical issues

Choroid plexus cysts on PN ultrasound Increased risk of 1:56 for Down Syndrome in current pregnancy based upon abnormal maternal serum screen Increased risk of 1:2 for developing HD based upon family history information Necessity of first completing the HD testing protocol for self, including both psychiatric and neurologic evaluations Restricted time frame for decision making: (a) to allow option for pregnancy termination (b) to have available insurance to cover cost of Huntington disease testing for self Anxiety concerning (a) amniocentesis procedure (b) risk of Down syndrome (c) risk of Huntington disease for self and fetus (d) social situation (e.g., single parent, only temporary employment) Fear of HD diagnosis through neurological exam: (a) afraid to learn she was already symptomatic (b) employment discrimination (c) health/life insurance discrimination Chronic lack of consistent social support: (a) current father of the baby not involved (b) past husband committed suicide (c) no parental figure support (d) minimal contact with friends and relatives Highly scattered thought processes with frequent forgetfulness: (a) possible manifestations of HD or other dementia (b) possible underlying psychiatric illness (c) questionable ability to give informed consent Prenatal diagnosis of an adult-onset disorder Implications of HD diagnosis for future employment/insurance with no permanent financial support, health or life insurance Questionable capacity for complex decision making

During this process, we researched whether there was an existing counseling model or tool to describe our approach. We believe that, given our team approach and the multiple stressors, our methods are best characterized as fitting Payne’s Crisis Intervention Model that is outlined in the social work literature (Payne, 1991). Based upon this model, some patients referred for genetic counseling can be viewed as being in a state of crisis (although it may not be identified as such), feeling as though they are incapable of making decisions about the management of their pregnancy, genetic testing options and/or life planning issues. A psychological crisis is defined as an individual’s perception that he or she cannot solve a problem (Aguilera, 1998). This impasse often arises after a series of difficulties lowers the individual’s confidence about being able to make successful decisions. In the Crisis Intervention Model, the counselor’s role is to assist a patient to move beyond the impasse by identifying the crisis, increasing the patient’s understanding of the issues, facilitating decision making, and aiding adjustment to those decisions.

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We modified Payne’s three phase model in order to apply it to typical genetic counseling interactions. Table II contains an illustration of how we specifically used this three phase model. In the first phase of this modified model (Formulation), the genetic counselor works with the patient to focus on the current crisis situation, to evaluate the relevant problem areas, and to define specific tasks that must be addressed. Setting a defined timeframe for the accomplishment of these Table II. Application of Modified Model for Treatment in Crisis Situations Beginning phase (Formulation) Focus on immediate crisis situation Identify the precipitating factor that Risk for aneuploidy prompted referral Family history of Huntington disease Elicit emotional response to Anxiety surrounding risks to fetus situation/event Anxiety surrounding risks to self Discuss effects/disturbance of this event Anxiety levels prevented comprehension of medical on coping information and decision making Evaluate current predicament Prioritize problem areas to address Fetus vs. self (risk of aneuploidy and diagnostic with client procedures vs. risk of HD and testing protocol to SA) Focus on one target area Risk of aneuploidy and testing options (prenatal genetic counseling) Risk for Huntington disease for self/fetus and testing options (medical genetics genetic counseling) Develop contract for further activity Define specific tasks for client and counselor: Client Decide between prenatal testing options Decide upon HD testing (self, fetus) Counselors Gather information as to availability of testing Schedule timeframe for decision making with SA Offer additional support/information as needed Middle phase (Implementation) Obtain relevant data Obtain necessary background information Obtain test results and relevant family history (ultrasound, MSS, amniocentesis karyotype, family history, psychiatric evaluation) Identify main themes Themes include Anxiety Lack of social support Lack of financial resources Questionable comprehension Poor interpersonal relationships Work to bring about behavior change Identify client’s past coping strategies Denial Avoidance Set short-term goals Decision regarding amniocentesis Decision regarding storage of amniocytes for possible HD testing Decision regarding psychological and neurological evaluations for SA

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O’Daniel and Wells Table II. (Continued)

Agree upon tasks to help reach goals Consider use of information obtained from prenatal (action or thinking oriented) diagnosis (“What will you do with the information?”) Weigh anxiety of procedure or evaluation vs. need to know Discuss the risks and benefits of being diagnosed with HD via DNA testing or neurologic exam for self and fetus Seek social support person(s) Ending phase (Termination) Arrive at a decision to end genetic counseling interaction Timeframe dictated by Legal limits of termination of pregnancy Cessation of insurance at end of pregnancy Address resistance to end Encourage development of relationships to provide relationship emotional support There was no resistance on the part of client or either counselor to end the relationship Review progress in case Summarize themes Decreased anxiety through education and simplification of necessary decisions Increased comprehension of information through frequent encounters Elected to relocate to area with established social support Chose to delay HD testing until she was more financially stable Review goals accomplished Informed decision making regarding Prenatal diagnosis (aneuploidy and HD) HD testing protocol Review work not completed Social support sought through return to area of previous residence Plan future activity Discuss present issues Establish parenting support through local programs and social support networks Renew ties with support persons Obtain stable employment Discuss plans for future Provide contact for future local HD testing center Communicate that client can return Reiterate the availability of both genetic counselors for future with future issues questions or medical records Discuss timeframe to reach resolution

tasks is important at this stage. In SA’s case the timeframe for all decisions was determined wholly by the stage of her pregnancy. The timeframe for the pregnancyrelated issues were constrained by the state’s legal gestational termination age. The timeframe for the self-related issues was constrained by the limited medical insurance coverage available only for the duration of the pregnancy in the absence of additional financial resources. The second phase (Implementation) refers to the time during which the counselor and client gather all relevant factual information and identify the main themes in the patient’s life that may present barriers to resolution of this and other crises. Based on these themes and the patient’s previous coping strategies, the genetic counselor works with the patient to set short-term goals and to agree upon the

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tasks that will accomplish these goals. SA’s short-term goals were defined by the three major decisions the faced: (1) amniocentesis for aneuploidy; (2) continued storage of amniocytes for prenatal HD testing; (3) fulfillment of HD testing protocol for self, including psychologic and neurologic evaluations. The tasks required to reach these goals became the focus of the genetic counseling sessions. In the final phase of this counseling model (Termination), it is necessary to plan an end to the current genetic counseling interactions. The counselor and patient work to reach resolution of the issues within the specified timeframe, to summarize the themes previously addressed, and to review the goals that were accomplished as well as to identify work not yet completed. Lastly, it is necessary to discuss plans for the future and to clearly communicate to the patient that the genetic counselor is available as additional issues or questions arise. Having successfully met her short-term goals, we contracted with SA regarding her future goals. Now recognizing the need for additional emotional and financial support, SA made plans to move closer to those resources. We provided SA with contact information for a new HD testing site as she planned to pursue the presymptomatic HD testing protocol once these additional supports were in place. OUTCOMES We believe that our counseling interactions with SA led to a successful outcome. SA made problem-focused decisions within the specified timeframe of her pregnancy and she seemed to adjust to those decisions. She also constructed a future plan, taking actions to address her need for emotional support and economic stability. As part of this plan, SA moved to a geographic area where she reportedly had good social supports. She also requested the contact information for a local HD testing center so that she could readdress testing after establishing stable employment and health insurance. This was a very challenging case on several levels. Most challenging, however, was to direct SA in her vulnerable state toward independent decision making without influencing those decisions. Separating the issues simplified the formulation and accomplishment of the necessary tasks to reach each decision. It aided our client by helping her focus on one concern at a time without becoming overwhelmed. Our constant counselor-to-counselor communication enabled us to recognize and address concerns that arose in each other’s sessions. This knowledge allowed us to redirect SA’s focus to the current issues. Through our involvement with this case, we learned that giving a patient direction does not mean being directive about the outcomes. This case also illustrates the importance of coordinating patient care with other genetic counselors. Lastly, the recognition and use of a crisis counseling model guided our genetic counseling approach and aided in the successful conclusion of this complicated case. We both agree that we would use this counseling approach again with similar cases.

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ACKNOWLEDGMENTS We acknowledge the invaluable input and vision of our reviewers and the editor. We also thank our many colleagues who provided constant moral support. REFERENCES Aguilera D (1998) Crisis Intervention: Theory and Methodology. St. Louis, MO: Mosby-Year Book. O’Daniel J, Wells D (2000) Approaching multifaceted cases with teamwork and crisis intervention. J Genet Couns 9:526. Payne M (1991) Crisis Intervention and Task-Centered Models. In: Payne M (ed) Modern Social Work Theory: A Critical Introduction. Chicago, IL: Lyceum Books, pp 101–117.

Approaching Complex Cases With a Crisis Intervention Model and Teamwork.

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