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• W1969726671 abstract "Many of my defining moments as a genetic counselor have occurred when I have had the privilege of working with families during their most trying times. It is when I am working with families who are at their most vulnerable, scared, and worried, that inevitably my role transforms from knowledgeable provider to a more integral role in their journey. Sometimes I become a long-term source of support. I am a cancer genetic counselor, and last year I met with a young couple who had just received devastating news. The husband, at age 34, was diagnosed with gastric cancer. His prognosis was thought to be relatively good at that time, and the couple was exploring his treatment options and receiving opinions from specialists at different hospitals. The couple was extraordinarily concerned, understandably, as to the risk for their young children to develop cancer in the future. They were both very open and honest about the emotional roller-coaster that they had experienced in a very short amount of time. They asked many questions, were very warm, and were very grateful for my explanations and for our conversation. I was particularly impressed with how open and honest the husband was about his journey with a cancer diagnosis at such a young age. He was very comfortable with discussing how he was devastated by the news, scared to potentially die, and terrified to leave his children without a father. The family history and medical history were potentially consistent with Lynch syndrome. He consented to molecular genetic testing for Lynch syndrome, and the plan was to meet again when results were available. If negative, testing for Hereditary Diffuse Gastric Cancer would be considered. Prior to their scheduled follow-up appointment, I received a call from my patient's wife. The cancer had very rapidly metastasized, and the prognosis was now far from favorable. This is the juncture at which I became more than this couple's genetic counselor. I never met with the husband again; his treatment occurred at a different hospital, and his health quickly deteriorated due to his metastatic disease. I verbally disclosed his negative Lynch syndrome results. He consented to testing for HDGC. However, some practical issues had now arisen. The husband was not expected to live much longer and not only did he want to know his HDGC results before his death so that he would potentially more specifically know the implications for his children, but his insurance needed to be billed prior to his death so that testing would be covered. While I was on a vacation out of the country, I was continually in contact with my patient's wife and the testing laboratory via e-mail. I was able to provide the couple with negative results 36 hours before his passing. The conversations that I had with his wife, becoming a source of support for her grief, and receiving an invitation to attend her husband's wake and funeral really became a “Defining Moment” in my career. I was moved by his wife's strength, her open and honest dialogue, and her description of the positive impact that I provided during the worst time in her life. This woman's journey was further complicated by the fact that her husband's estranged family was now contacting her, days after his burial, asking for access to his medical records and genetic test results. She very much struggled with wanting to protect her husband and her children's privacy, while providing the minimum amount of information to allow for appropriate medical management for her husband's relatives. I served as the bridge to directly communicate my patient's genetic testing results to his relatives’ genetic counselors. I advised her that these were the most essential pieces of information to share with family members. His wife felt very comfortable with this plan. She was very grateful to me, because although I felt this was a relatively standard aspect of my job, it was another aspect of her husband's death that was causing much duress and an additional topic for which she had no previous experience in handling. This served as a reminder to me that we cannot necessarily anticipate the greatest stressors that individuals and families may be encountering. Listening to her grief about missing her husband, her anxiety regarding her children growing up without a father and being a single parent, financial concerns, and her support systems allowed me to use a skill of mine that is sometimes under-utilized in a more typical patient encouter, as well as allow me to get to know an amazingly strong woman much better. It has helped me remember that every person who I see may be experiencing the hardest days of their life. Every person has a story, and I must anticipate that some patients will only need me as a knowledgeable resource while others will need much more long-term support. Working with this couple and being in contact with my patient's wife for more than one year now since we first met has reminded me of the significant roles that we may play for families as genetic counselors. I served as an information source, aided in their decision making process, and facilitated genetic testing. Yet, I also have served as a true counselor, an advocate, and as an indirect family intermediary. The numerous instances in which my patient's wife graciously indicated that I was an enormous support to her and one of the individuals who has helped her the most during the most horrible and sad time in her life reinforced my selection of genetic counseling as a career path. While we serve an important role for all of our patients, we recognize that we become more integral to some individuals’ and families’ experiences than others. While I feel fulfilled every day at my job, there have also been some counseling experiences that have reinforced that I am also good at my job. Serving as this couple's genetic counselor allowed me to experience a “Defining Moment” in my career—by working with families during their most trying times and functioning as a support, I fulfill my role as a genetic counselor while developing into a better one." @default.
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• W1969726671 date "2011-11-30" @default.
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• W1969726671 title "A Couple's Devastating Journey & My Development as a Genetic Counselor" @default.
• W1969726671 doi "https://doi.org/10.1007/s10897-011-9433-2" @default.
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