Guest Post By Professor Sharona Hoffman: On Receiving A Parkinson’s Disease Diagnosis
Posted on March 23, 2014 | By Larry Kahn | Leave a response
Sharona Hoffman is the Edgar A. Hahn Professor of Law, Professor of Bioethics, and Co-Director of the Law-Medicine Center at Case Western Reserve University School of Law in Cleveland. She is currently on sabbatical as a visiting scholar at the Emory University School of Law and at the Centers for Disease Control. She has published articles on employment discrimination, health insurance, disability law, biomedical research, the concept of race and its use in law and medicine, emergency preparedness, and health information technology. She is a frequent speaker on health law and civil rights issues and has been widely quoted in the media, including the L.A. Times, USA Today, BusinessWeek, and the New York Times. Her firsthand experience with her husband’s PD diagnosis so eloquently described in her guest post below seems typical. Especially with a degenerative disease like PD, neurologists must do a better job of directing newly-diagnosed patients to resources that can help them understand and live better with their disease: physical therapists, social workers, community-based exercise programs, support groups and clinical trials, among others. [This post first appeared in the HealthProfLaw Blog edited by Katharine Van Tassel on February 11, 2014 and is reposted with the author’s permission.]
On October 15, 2013 my husband, at the age of 55, learned that he has Parkinson’s Disease. He had had a tremor for many months, and when it grew more persistent and became accompanied by stiffness and other discomfort, Andy decided it was time to see a neurologist. We had been anxious for days before the appointment. Hours of Internet searches encouraged us to cling to the hope that the tremor was benign, as many are. But we also knew that we could get life-changing news from the doctor.
The neurologist did a very thorough examination. Then, without indicating that he was ready to deliver his decree, he blurted out, “Well, this is clearly Parkinson’s Disease.” He explained that it was a degenerative, neurological disease caused by loss of dopamine cells in the brain and that it usually progresses over decades. The doctor discussed a variety of drugs and recommended one for Andy to try first, assuring us that “most patients tolerate this one well.” He instructed us to make another appointment in three months and left the exam room to see his next patient.
What followed were some of the most difficult days of our marriage. Life had changed in an instant. We were consumed by fear that our future was bleak and uncertain, that our place in the world had permanently shifted, that our sense of ourselves would never be the same. And our next medical appointment was not for three months.
While our friends were incredibly patient, affectionate, and encouraging, we were left on our own to construct professional support systems. In the turmoil of the days and weeks after the diagnosis, what Andy needed was someone to call frequently to discuss his symptoms, his reaction to the new medication, his mood. We needed reassurance that this disease could be managed and that life could go on, and waiting for three months was not a viable option.
I don’t think Andy’s doctor was atypical or that he deviated from standard protocol. But patients receiving life-changing diagnoses need much more intensive attention, and they need to benefit from a team approach. In 1994, when my mother became a breast cancer patient at M.D. Anderson in Houston, a social worker literally ran after us as we left one of the first doctors’ appointments to make sure that we learned about a variety of resources that the cancer center offered to promote patients’ mental and emotional well-being. How I wish that all medical centers adopted similar practices! According to experts, up to 60% of Parkinson’s Disease patients experience depression. Overlooking these symptoms can have devastating consequences for patients.
As we contemplate health care reform and new forms of health care delivery, let us not forget the importance of creating adequate support systems for patients. These do not have to come in the form of expensive specialists. As many before me have noted, nurse practitioners, social workers, and other care-givers can provide patients with invaluable assistance, so long as they are readily accessible. But delivering the news of a serious neurological disease and sending the patient off with a next appointment that is months away is exactly what should not happen.