Analysis Essay

Joan’s family bill of rights: an essay by Barbara Lewis

BMJ 2014; 349 doi: https://doi.org/10.1136/bmj.g6022 (Published 17 October 2014) Cite this as: BMJ 2014;349:g6022
  1. Barbara Lewis, chief executive
  1. 1Joan’s Family Bill of Rights, 2934 Beverly Glen Circle, Suite 240, Los Angeles, CA 90077, USA
  1. BarbaraLewis{at}JoansFamilyBillOfRights.com

After spending two weeks in an intensive care unit watching her sister, Barbara Lewis was spurred to improve interactions with hospital staff by writing a bill of rights for families and carers and championing the development of patient and family advisory councils in US hospitals

Some events change our lives forever. My younger sister, Joan, called me late one night to tell me that she had been admitted to the intensive care unit of her local hospital with an unknown infection that was causing low blood pressure and kidney and liver failure. Although my sister said that she’d be out of the hospital in a few days, I caught the first plane the next morning and flew across the US to be with her.

As a marketing consultant for over 20 years, I’ve been focused on customer service. So while I sat at my sister’s bedside seeing her condition improve during the first week, I began assessing the patient service of the many healthcare professionals who came into her room, as well as others I observed throughout the hospital.

I began to jot down notes about my observations: how the healthcare professionals acted, what they did, and how they treated patients and family members. For example, sitting in my sister’s room for 18 hours a day, I was on my computer researching her condition and communicating with experts around the country. I discovered that although most immobile patients need a blood thinner such as heparin, someone with liver problems should not be given that medication. When I brought this up at rounds, the doctor disagreed and asked, “Do you want your sister to die of a blood clot?” which I thought was cruel. (To his credit, the doctor did order a test the following day and discovered that my sister …

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