The topic in this brief article is very personal to me. Recently, a member of our family endured a very long hospital stay as a result of something that happened out of the blue. While they have made a full recovery, the experience of living inside of our nation’s healthcare system was eye-opening to say the least. My observations, and lessons learned, during this experience have led me to write about the critical importance of patient advocacy.
Whether you’re entering a VA hospital or a private hospital, having a patient advocate can mean the difference between receiving optimum care for recovery and complete lackluster care with possible further injury. Many citizens often enter a hospital alone. They are often subject to trying to engage, understand and process information being provided to them for their health, while at the same time experiencing the fog of symptoms, effects and medications of that care. Decisions can be difficult to make. Care can be hard to manage. Having someone with you can make all the difference.
What is a patient advocate?
Patient advocates support and promote patients’ rights as they navigate the health care system. A patient advocate can guide you through the confusing maze of health care with caring and sensitivity. (S)he can focus exclusively on your needs and help you resolve concerns about the quality of your care, get the care you need, and ensure that your voice is heard and that you are included in decision-making. – www.assertivepatient.org
Advocacy may include, for example, providing additional information for a patient who is trying to decide whether or not to accept a treatment. Or, the advocate may defend a patient’s rights in a general way by speaking out against policies or action that might endanger their well-being or be in conflict with their rights.
Typical advocacy activities:
- Patient rights
- Matters of privacy, confidentiality or informed consent
- Patient representation
- Awareness building, support and education of patients, survivors and their caregivers
Over the past two months, I served as a patient advocate for a family member that suffered an acute illness and complications. Fortunately, I was able to stay with them for the duration of their stay in the hospital.
During that period of time, I met several individuals who were absolute superstars. There are many professionals working within our healthcare system today that do an outstanding job of treating a patient like a human being. The best ones pay particular attention to each individual and their personalities in order to deliver customized care. They pay attention to the little details that make a difference. This may include bringing you that cup of coffee in the morning because it makes you feel good to have it. It may include getting you up and out of the bed to ensure that you are active and progressing toward recovery. Perhaps they take the time to get you outside of the room or even outdoors for fresh air for a mental break. Sometimes, even providing those extra cots and pillows for loved ones to stay with you can ease your mind. These stars (no matter what their title) truly care about getting a person better. Yet, from my recent experience, these people are often few and far between.
On the flip side, there are many hospital staffers that may simply be punching a clock. Some just get through the day doing the bare minimum. These are the ones that you have to keep an eye on. If you have a patient advocate always present, such as a close family member or friend, they can help you avoid the errors and mistakes that often come with these types of hospital caregivers.
In my personal experience, it seemed that almost 80% of the time I was constantly catching nurses not communicating with each other. Nurses were not sharing vital information at shift change to their counterparts. Care partners often varied greatly in their level of knowledge and techniques for care. Some workers would just walk in with an order to perform tests or draw blood for labs, only to find out that they had the wrong patient and/or the wrong room!
There are many things to watch out for as an advocate to prevent poor patient care. Here are a few areas that I observed where problems can occur.
Are nurses and staff doing bedside summaries at shift change? If not, they should be. In order to ensure consistent care, you must ensure that each new team communicates with the next. Otherwise, so many things can fall through the cracks or your expectations for a certain standard level of care will be unmet. All too often, communications break down between nurses and teams. This can lead to using the wrong methods, medications or more. Also, make sure that all doctors and specialists are communicating with each other. They need to be talking to one another in order to gain a comprehensive overview and ‘big picture’ of the situation. Many doctors simply come and go at different times for different reasons. They may only be assessing you in the moment based on numbers on a page. Don’t let this happen. Make sure the big picture is always understood and shared with all. Finally, make sure all staff are communicating with YOU and the patient about all things at all times. You need to be in the know. It’s there job to keep you informed. Be vigilant!
Medications during a hospital stay (whether by mouth or by IV) can get complex quickly based on what happens. Always stay on top of what is being given to the patient. Understand how each works, what they’re for, and always ask about potential interactions and side effects. Take nothing for granted! Be clear about what the patient was on before they entered the hospital and communicate their baselines. You do not want your loved one to become a guinea pig with constant tweaks and adjustments to meds. You also don’t want them to get meds they do not need, or ones that may cause further issues to address later. Be careful!
Being mindful about safety of the patient is also a full time endeavor. There are so many little things that can lead to accidents. I have witnessed monitoring machines with their power cables running through wet sinks. I’ve seen staffers go to shift patients around in their bed only to not have the bed locked. I’ve watched as “professionals” with patients that require maximum assistance for mobility when standing drop them on the floor. I’ve seen nurses go to place a blood pressure cuff on the arm of a patient with a midline IV on the arm and ignore a huge bright sign that said “no IVs, blood draws or blood pressure cuffs on this arm”. I’ve seen nurses forget to put on a glove before touching a patient. I’ve seen some wear isolation gowns and others not. These are but a few examples of threats to patient safety. All people are human and all make mistakes. But there’s a big difference between an occasional honest mistake and gross incompetence. Always keep your eye out for safety issues with staffers, the room, beds, machines, medications, hygiene, sanitation, or even simple lifting and movement of the patient themselves.
There are many more areas to consider, but these first three are vital. Never hesitate to ask questions. Speak up and if you are not satisfied with the answers you get from one level of staff, go up to the next level and to the next until you are satisfied. I can’t tell you of how many business cards and personal contacts that I collected in just a few short weeks during my experience. I often joke that the only senior level administrator I didn’t meet during the stay was the CEO of the entire hospital. Otherwise, I pretty much met everyone else and voiced my concerns directly to them. Remember, sometimes you have to go up the chain a few times and repeat your concerns. Once you see immediate changes and improvement, then you’ll know what level to go to directly next time for future issues.
Why speak out?
Many people feel hesitant about being so direct and speaking out. That’s the wrong feeling to have. Not only are you speaking out for a standard of care for your own loved one, you’re likely preventing these similar issues from happening to those others throughout the hospital that have no advocate at all. Remember, speaking out and calling out legitimate problems to administrators that can make changes helps them to prevent or eliminate existing problems for everyone else too.
In sum, patient advocates give a voice to patients. When you have to go into the hospital for any type of treatment, procedure or stay, ensure that you have someone that can go with you and be your representative by your side. Have someone there ready to step in when you need them to in order to both protect you from harm and promote key decision making that improves your well-being and speed of recovery.
For helpful links to learn more about patient advocacy and the resources that exist, check out a few of these links readily available online:
- Patient Advocate Foundation – http://www.patientadvocate.org/
- RN Central – http://www.rncentral.com/blog/2012/what-exactly-is-patient-advocacy/
- Professional Patient Advocate Institute – http://www.patientadvocatetraining.com/
- Wiki Page on Patient Advocacy – https://en.wikipedia.org/wiki/Patient_advocacy
- The Assertive Patient – http://www.assertivepatient.org/patient-advocate.html
- National Patient Advocate Foundation – http://www.npaf.org/
- National Comprehensive Cancer Network – Advocate Resources – https://www.nccn.org/patients/advocacy/
- Patient Advocate Resources List – http://www.advoconnection.com/resources/nplist.asp