A long time ago, one of my mentors told me, “Anne, if you have a problem, please come to me – but in addition to the problem, bring a recommendation for a solution.” This statement has stayed with me over the years and helped me use my voice to resolve issues and effect change.
One of the professional responsibilities a Nurse Case Manager has is to advocate for their patients. Case Managers do this every day with members of the healthcare team, payers, and others they meet on their journeys.
Barriers to care arise from laws, acts, and policies that negatively impact our work and the patients we care for. These can be Federal, State, or organizational policies. As a member of the Case Management Society of America and the National Nurse Network, I have had the opportunity to participate in Public Policy debates on the local, State, and Federal Levels. I have great memories of trips to DC, where we visited various legislative representatives in the House and the Senate to discuss challenges, in patient care and how specific legislation could help address those issues. I learned that there were always two sides to the debate, and I had to listen to the concerns to move forward. I was always struck that the various legislative leaders seemed attentive and cared about what we were saying.
Their work was not easy as so many people came to them with requests, they felt were important. Politicians can only do so much that many requests, although necessary to one group, could not be addressed as there was no time. We learned how slow the legislative process was and how tough decisions needed to be made to keep things on track. Many people give up due to this, but change can happen for those who are committed to the process.
To illustrate how using your voice and actions can effect change, I wanted to share an example of one Patient Advocate who had a challenge and came up with a solution. Mary Daniel is a Florida Health Advocate. She shared that her husband had progressive dementia and Mary had to place him in a Memory Unit at one point as she could not care for him alone. She had promised her husband she would visit him every day and be there, so he knew she did not abandon him. She kept her promise until COVID hit, and everything shut down. Even though she was his wife, she was not allowed to visit him. Desperate to see him, she took a job as a dishwasher at the Memory Care Unit he was living. As an employee, she was able to visit her husband. Here is a link to one of the stories about her creative solutions https://www.today.com/health/mary-daniel-works-dishwasher-see-husband-nursing-home-t186518
The story went viral and caught the attention of the staff of Governor DeSantis office in Tallahassee, Florida. Staff contacted Mary and worked with her for months to design legislation known as the “NO Patient Left Alone Act.” The Act was signed into law in Florida on April 6, 2022. Here is a link to read the No Patient Let Behind Act.
As a result of this action, there is now a House Bill on the National Level titled “Essential Care Giver Act.” This Act will allow every resident to have two essential caregivers who can be with them following the same safety protocols as staff. Here is a link to the House Version of the Essential Care Act.
This story illustrates the power one person can have when they advocate for patients and families in the healthcare system. I urge you all to get involved in your professional organization, local community, and organization to use your voice when you see a problem and work with your colleagues to find solutions.
If you have an example where you advocated for your patients, please feel free to share it with me in the comment section or email me at allewellyn48@gmail.com
great article anne! sharing on my facebook !
My mom has lived in the memory care wing of an NH in Madison WI for a little over 2 years. I’ve been extremely happy with the loving, patient, kind care she’s received from exceedingly competent people and communication has always been great! Recently a big box company took over the management there and one of their first decisions was to lift the masking requirement of visitors and staff but not give the most recent bivalent COVID vaccine that was approved and rec’d for immunocompromized and/or 65+ yr old because “it’s not required by the CDC “. That led to an outbreak of 40 people including my mom. I was horrified when I saw that the plan was to again lift the re-instated mask requirement once they go 14d w/out any new cases. I know I wasn’t alone in advocating for change, but I sent almost daily emails or called everyone I could think of including the hospital CEO and Dane County Public Health (the management would not respond to my repeated requests for contact). Yesterday an email was sent out stating that “CDC rec’s have recently changed” and the vaccine is now being offered. Nothing worse than a daughter who’s a retired PA and certified patient advocate, right? 😁 I know I was not alone in advocating but it feels pretty darn good to have been one of the voices!
Hi Anne, I remember seeing this on TV. Creative way to be with your loved one during a pandemic. Kudos to his wife for thinking of this and kudos to the facility for hiring her. There is no doubt that this benefitted all parties involved. Also, happy to see that the Governor acknowledged the importance of this and passed legislature to avoid this happening again, God forbid we have another major health crisis.
I went through a similar situation with my granddaughter who was hospitalized 3 months after turning 18, during the pandemic. She was considered an adult and not allowed any visitors. She was petrified not knowing what was going on, the purpose of testing that was being done, the IVs that limited her movement, the general hospital environment. I had to reach out to her physician to explain that just because she was 18, she needed her parents and someone to advocate for her as she was not comfortable making medical decisions and signing off on medical procedures. Thankfully, the physician agreed with me and allowed restricted visitation and also agreed to speak with me on the phone to discuss her care. We really have to advocate for our loved ones and patients as sometimes the people in charge are so concerned with following rules that they forget the little details that so impact a patients care and recovery.
Thanks, Anne,
For another great article.
In sickness and in health, an unshakable vow for so many of us!
I love Mary’s love for her husband 💕
What a phenomenal story! Thank you for sharing and linking to the legislation.