The case is presented in short segments with questions. Read the case material as it is presented, think through a response to the questions, and link to answers and related resources.
Ms. Grace Tester is a 63 year old woman with Down Syndrome who lives in a large institutional setting in Ohio. She has an intellectual disability, arthritis, and asthma and wears a hearing aid for a moderate hearing loss. She has developed signs of dementia over the past year. Her only living relative is an 80 year old sister who lives on the east coast and rarely sees her. Ms. Tester turned 18 while living in the institution and her parents never saw the need to pursue guardianship rights, so she does not have a guardian.
On a routine annual examination, her physician discovers a small lump in Ms. Tester’s left breast. She has a family history of breast cancer; both her mother and a sister died of the disease. A mammogram confirms a characteristic mass indicative of cancer. The physician would like to perform a needle biopsy, followed by surgery and further treatment if cancer is confirmed. He is not sure how to proceed since Ms. Tester does not have a guardian.
Before answering the questions that will be posed in this case, it will be helpful to learn more about the lives and health of people with Down Syndrome.
- Tassé, M. J., Havercamp, S. M., Benson, B. A., Manickam, K., Allain, D. C., Davis, S., & Navas, P. (2013). Health Characteristics and Access to Healthcare Services of Adults with Down Syndrome: Brief Report. Columbus, OH: The Ohio State University Nisonger Center (http://nisonger.osu.edu/wp-content/uploads/2016/10/NC-DownSyndAdultHlthCare-2013-2.pdf).
- Ross, W. T., & Olsen, M. (2014). Care of the adult patient with Down syndrome. Southern medical journal, 107(11), 715-721. (https://sma.org/wp-content/uploads/2015/03/Care_of_the_Adult_Patient.pdf ). On-line only summary table: (http://links.lww.com/SMJ/A29)
- Vanderbilt University’s Healthcare for adults with intellectual and developmental disabilities Toolkit for primary care providers includes a “Health Watch Table” to highlight key considerations in providing primary care to adults with Down Syndrome: http://vkc.mc.vanderbilt.edu/etoolkit/physical-health/health-watch-tables-2/down-syndrome/.
- Carr, J. (2012). Six weeks to 45 years: a longitudinal study of a population with Down syndrome. Journal of Applied Research in Intellectual Disabilities, 25(5), 414-422. (Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/22890942)
Two books written by people with Down Syndrome provide personal insights:
- Cooley, and Flores, L. (2012). The selected essays of Sarah Savage Cooley.(Self-published and available at http://www.blurb.com/bookstore/invited/2878069/c9c5bc089b68159461145eb1c7c31f9b8d789a22?utm_source=TellAFriend&utm_medium=email&utm_content=3495681)
- Kingsley, J., & Levitz, M. (1994). Count us in: Growing up with Down syndrome. HMH.
How can the physician obtain consent for a biopsy, and, if needed, treatment?