Since joining the Consumers Union Safe Patient Project, I have had the pleasure of meeting and getting to know a number of amazing patient advocates. By and large, those who enter the world of patient advocacy come from
two groups: people who lost a loved one as the result of a medical error, negligence, hospital-acquired-infection, etc., and advocate on behalf of the person they lost, and people who were themselves harmed but survived and are able to advocate to prevent others from suffering as they did and are.
Martha Deed belongs to the former group. Martha is a psychologist who lost her daughter, Millie, in November 2009 to a series of medical errors that compounded her existing autoimmune syndrome: Behcet’s disease. I first met Martha at a convening of patient safety advocates in Yonkers last October. Since then we have also worked together as part of North East Voices for Error Reduction (NEVER), a regional collective of patient advocates from Northeast states.
I recently read a piece that Martha wrote for Patient Safety Insight, the magazine of American Society of Professionals in Patient Safety, “Connecting the Dots: From Family Advocacy to Patient Safety in the Hospital“. I like the article for a number of reasons. First, Martha shares the uncertainty that many of us feel in doing this work. As anyone who has visited a hospital knows, the American healthcare system is incredibly complex, and many of us who come to work in patient advocacy do not have formal training. Second, Martha shares the fear and confusion anyone might feel in trying to advocate for their family member. Finally, Martha shares her hard-earned wisdom on how to be an effective advocate for your loved one.
I encourage you to read the piece in its entirety, but at a minimum. please take time to review the following tips from Martha:
Before hospitalization occurs:
1. Family members can make themselves familiar with the hospital they are most likely to use by looking up their local hospitals on their state health department website. States vary regarding information they make public. Helpful information includes the record of citations and corrective actions that have been taken against the hospital by the Department of Health. Even if the entries are not current, the citation record can alert family members to potential hazards in the hospital.
2. Look up results of patient satisfaction surveys for the hospital. Check for infection rates, medical errors, and mortality and failure to rescue rates as reported by such websites as Hospital Compare
3. Especially if you have a family member with chronic illness, read a good book on patient safety, so that you do not find yourself trying to learn about patient advocacy under fire. The Empowered Patient by Dr. Julia Hallisy (theempoweredpatient.com) is almost encyclopedic in scope and practical detail. While it may not be feasible to do everything that Dr. Hallisy recommends, it is very helpful to become aware of the pitfalls and steps she suggests.
Often, however, the hospitalization comes as a surprise and a shock. Under those conditions, it is difficult to operate at one’s best.
1. Read the hospital’s orientation material carefully. Find out who is in charge of your loved one’s case. Be present for rounds by that physician.
2. Make sure that others are available to visit and comfort the patient if you are engaged in advocacy.
3. Have someone stay with the patient as close to 24/7 as possible, because problems can occur day or night. Do not attempt to do it all by yourself.
4. Get some rest yourself so that you can remain helpful and clear thinking.
5. Keep a log, so you do not lose track of what is happening with your family member’s care. Include notes of any contact with medical staff. Write your notes as soon as feasible after a conversation. This step can go far in preventing misunderstandings as well as mistakes.
6. The hospital will likely wish the patient or family to designate a single contact person. However, the contact person (you, the patient advocate) can benefit if you have someone with whom to discuss patient’s treatment. This back-up person ideally should know the patient well and be someone the patient trusts. The back-up can assist the family advocate with keeping focused, identifying communication or treatment gaps. If this person has had previous advocacy experience at that hospital, it can be a bonus. The back-up can be a relative, friend, clergy, or any other person who is informed about the workings of the local medical community.
7. Always, no matter what, remain polite. This is true even though you should not hesitate to go right up the hospital hierarchy if you sense an emergency.