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 had heparin induced thrombocytopenia and she was immediately taken off the drug.)

I asked myself how a physician can know everything, with 100 000 diseases and 10 000 medications. Shouldn’t the doctor have acknowledged my research, especially since I teach research at UCLA Anderson School of Management and worked as an investigative journalist? Isn’t healthcare a team sport with patients and families involved?

My plan was to meet with the head of the intensive care unit when my sister was discharged. During the first week, she improved and was sent to a regular hospital room. Her blood pressure had risen and excess fluid had been removed. She looked good. The doctor said that she would be released after the weekend. I figured that I’d stick around for a while to make sure she was fine before heading back to Los Angeles.

But her blood pressure began dropping and her body started filling with fluids again. I overheard her nurse whispering on the phone outside her room. She walked in and handed me the phone; Joan’s doctor was on the end. She gave me the terrible news that there was nothing they could do to help Joan.

When I recovered enough to speak, I asked the nurse what she had been whispering about. Her words shocked me out of my anguish. She had thought my sister would die the night before, and when I queried her she said that she had seen many people pass away. In her opinion, my sister was very near death. The nurse had called the doctor to share her observations.

Joan went back to the ICU, where everything started to fail. I was at her side, along with her husband, when she died two weeks after she had been admitted in February 2012.

Document takes flight

When I returned to Los Angeles after the funeral, I found my 44 pages of notes segmented by a daily journal, which included vital signs, prescriptions, test results, details of doctor and nurse visits and my assessment of each person, and other observations, such as waste basket collection at 10 pm that woke my sister after she had endured a day of high pain and had finally fallen asleep.

I debated whether to email the head of the ICU. I thought that if I were that person, I would want to know what I had observed. I wrote Joan’s family bill of rights (box) in memory of my sister with the hope that the hospital would improve the care of patients and family members. I showed it to a few people, who were encouraging. My daughter in law suggested revising the document, so it was uniform in its perspective. I hit the send button and waited.

Joan’s family bill of rights*

Throughout hospitals are posted “patients’ bill of rights and responsibilities,” which outline the expectations of patients. Nowhere are there rights of families, who spend long hours every day at the bedsides of loved ones. Here are my suggestions for hospital staff when dealing with families:

  • 1. Don’t say, “I suck at IVs.” That information doesn’t inspire confidence in your abilities as a nurse. You are our lifeline to the doctors and we expect that you are great at what you do

  • 2. Announce yourself when you enter the patient’s room, so the patient isn’t startled by your actions. Introduce yourself to the family

  • 3. Before you raise the bed or begin a procedure, describe it to the patient, so there are no surprises. Some patients want to be involved in every decision and others are in such pain that they need to prepare themselves for the least bit of movement or the next dreaded procedure. Every single thing you do to the patient is felt by the family

  • 4. Don’t question the doctor’s orders as in, “I don’t know why the doctor did that.” Your questions raise red flags and bust our confidence. If you don’t agree, please consult the doctor privately. We are not in a position to make judgments on the doctors’ orders

  • 5. Don’t complain about anything—the computer doesn’t work, there are no shelves, etc. Family members of gravely ill patients don’t want to hear your petty complaints. We want the room filled with as much positive energy as possible

  • 6. Don’t dismiss the family’s involvement as meddling in your work. Some people can cope with a sick family member only by trying to feel in control of a world that is eons away from everyday reality

  • 7. Determine the patient’s energy level before you enter the room. Your energy level should match the patient’s and if it’s calm and relaxed, you should mimic that emotion, so you’re in tune with the patient and the family

  • 8. Know that every word you say in the room, despite the appearance that the patient is sleeping, may be understood by the patient. When the patient is resting with closed eyes, step outside the room to talk with family members

  • 9. Comfort the patient like a loving family member. Every small action that you take may ease the patient’s final days and alleviate the family’s nightmare

  • 10. Read the research about the importance of sleep. Don’t carry on conversations as if you’re in the cafeteria. Use your quiet voice at all times. Families hear all the gossip, confidential patient information, and inconsiderate remarks such as “I’m just waiting for my two patients to die,” unless you’re whispering

  • 11. Don’t arrange cleaning duties at 10 pm when the patient is trying to sleep

  • 12. Use a checklist for a room, so when you start your shift, you check all the machines, equipment, medicine, catheters, etc to ensure that they are operational and working properly. If a family member notices equipment that doesn’t look right or sound right, don’t brush them off

  • 13. Demonstrate concern for the patient’s family. Your kind words can save a breaking heart

  • *This is an abridged version of the bill. For the full document see the data supplement on bmj.com.

The head of the ICU later told me that she cried when she read the document. She passed it along to the hospital chief executive and he, in turn, sent it to the heads of the healthcare system. They called me to talk and, within three months, flew me across the country to make three presentations at their facilities. They videotaped the presentations and said that it would become the “cornerstone” of their training program.

Each time after I spoke at the health system, people were lined up to tell me their stories. I thought that I was sharing my personal story, but I realized that I had struck a nerve and this was a universal narrative. I was so shaken by the experience that I had to do something to help. Shortly afterwards, I decided to devote the rest of my life to improving the patient experience, relying on nearly three decades of writing, researching, and speaking to help me.

This healthcare system took a document written to help improve patient and family member care and used it as a training tool in their hospitals. I’m exceedingly impressed that they listened and they made changes. Periodically, when I’m in the area visiting my mother, I’ve met with the hospital chief executive and heads of the health system.

At our last meeting, the chief executive mentioned the changes that he’d made based on my suggestions. I was particularly impressed that he had addressed the noise level in the ICU, which was one of my major complaints and, I discovered, the number one complaint in hospitals.

New career

A couple of months after my decision to focus on improving the patient experience, I built a website and posted Joan’s family bill of rights. The document took flight and I received many emails from health workers saying they had been touched by it.

Since then I have been asked to join advisory councils and to write and speak about my experience, as well as about other healthcare topics. I have received a grant to research what US medical schools are teaching around the patient experience. I’m working with DocCom, an online communication skills curriculum for clinicians and students.

I am also excited about my research into patient and family advisory councils (PFACs), groups of 5-20 patients and family members who provide feedback to a hospital. To build a business case for starting a PFAC, I recently completed the first phase of my research to show the financial effect that PFACs have on hospitals. Sadly, few metrics exist to measure the benefits of PFAC projects, but I’m working to introduce metrics for every project that they undertake.

I was shocked to find that 60% of hospitals still don’t value involvement of patients and family members. In nearly every other industry, executives seek the opinions of their consumers; yet most hospitals have not adopted patients and families as valuable contributors. In the next phase I am going to find out why. My goal is that every US hospital will have a PFAC. (Next goal: every hospital in the world has a PFAC.) To accelerate the process, I’ve nearly completed a white paper, Become a Black Belt in PFACs, which aggregates the research, the survey results, and the resources for launching and sustaining a PFAC.

The hole in my heart has healed and my grief attacks have disappeared. Every day I’m grateful to my sister, who, in changing my life forever, inspired me to improve the patient experience. Thank you, Joan.

Biography

Barbara Lewis is the founder of Joan’s Family Bill of Rights, dedicated to helping improve the patient experience and patient outcomes. She has an MBA from UCLA Anderson School of Management, where she lectures on primary research. Barbara is co-chair of the Beryl Institute’s Global Patient and Family Advisory Council, and a member of Kaiser Permanente’s Regional Member Advisory Council.

Notes

Cite this as: BMJ 2014;349:g6022

Footnotes

  • Competing interests: I have read and understood BMJ policy on declaration of interests and have no relevant interests to declare.

  • Provenance and peer review: Not commissioned; not externally peer reviewed.

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