An Interview with Anne Llewellyn RN-BC, MS, BHSA, CCM, CCRN and an author, speaker, and the founder of Nurses Advocates
You can learn so much from talking with an experienced healthcare provider. Ann Llweellyn draws from her clinical background as well as her own experiences are a patient with brain cancer. The focus of our talk is what it means to share in decisions about care and how to prevent infection as a result of treatment.
You write and speak publicly about advocacy for patients so please describe how advocating for oneself or for a family member can make a difference in the outcome?
Being actively involved in your health and health care, is critical today. When you are thrust into the complex healthcare system, YOU are the only constant member of your team. The doctors will change, the nurses will change, and you will see different people as you move through the system. Being actively involved and advocating for yourself, allows you to better understand your care and make sure your care meets your goals. Asking questions, and evaluating options gives your back some of the control that you lose when you are sick.
Tips I give to All Patients:
- Have a binder to keep records of all of your appointments and keep notes on what was said.
- Doctors, nurses, pharmacists and all members of the team are used to people asking questions and want to know how you feel so they can know how the plan of care is working. If you don’t talk with them, they won’t know if you are having problems. Being open with your team allows them to answer your questions and explain things. They want to know your thoughts, concerns and goals.
- Don’t ever be afraid to speak up and ask questions. This is your right as a patient or a caregiver.
- If you feel you can’t advocate for yourself ask a family member or friend to assist. Ask them to go to your doctor’s appointment with you or if you are in the hospital to be there when the doctor visits you so they can meet with the treatment team, learn what is going on and and understand the plan of care Having another set of ears and eyes involved will help you be able to move through the healthcare system with having a clear understanding what is going on
- Asking questions is also a way to prevent medical errors, reduce fragmentation and duplication of services.
Do you see shared decision making and advocacy as complementary aspects of care? Please describe where you see similarities and differences in what both terms mean to a patient or family member.
Shared decision making occurs when your doctor talks to you about the options he/she offers you about your plan of care. If there is more than one treatment option for your condition, your doctor should explain each and how each can help you. The doctor will explain this to you in plain language so you understand each treatment option and how it would benefit you. After you understand the options, you can make a decision. Again, having someone with you for this discussion is important as you might not hear everything said and having a second set of ears to listen to the doctor, and help you ask questions is important.
I do see Shared Decision Making and advocacy as complementary aspects of care. All members of the healthcare team are starting to realize that the patient (YOU) are the most important member of the team and your need to be an active part of your team.
There is a saying today that says “no decision about me without me” because YOU, as the patient have a right to have a say in the care you receive. The team can make recommendations and provide the reason for their recommendations but it is your choice as the person being treated to make the ultimate decision on your plan of care. Making sure you are informed, educated and empowered by the team is the new norm in today’s healthcare system.
This blog’s primary focus is the role of shared decision-making as the foundation of safe care. Because your care required invasive procedures which are often the source of infection and harm for patients you did not have that problem. While hospitalized for your treatment you did not have an infection despite having invasive line called a Peripherally Inserted Catheter or PICC line. These lines are a potential source of infection for people who require a catheter to undergo treatment. Please describe the process staff used with your line and how they prepared you for discharge home with a PICC line.
Because I had to have chemotherapy every two weeks for an eight-week period, my doctor order a PICC link or an IV that would go into a central vein that would stay in place for the duration of my care. Anything that is artificial to your bodies is a source for infection. Also, because I was getting chemotherapy, my immune system was weak, so I was a high risk for getting an infection. Infection for a cancer patient is very dangerous so the team has learned how to care for people who have to have central lines, ports or PICC lines as part of their care.
Today, patients are not in the hospital as long as they were in the past. As a result, there is an emphasis on educating the patient and their family so they are aware of signs of infection and the importance of reporting these signs to the team as soon as possible. My husband, who was my caregiver/advocate, learned how to keep my PICC line dry when I took a shower. He also was informed of the importance of having the PICC line changed at periodic intervals and to report any signs of infection which would include: fever, pain, redness or any irritation.
The nurses who were part of the oncology team in the clinics or in the hospital all used the same process in changing my dressing. It was obvious there was a way to do this and each member of the team followed the same protocol. As a result of this systematic process I did not get an infection for the 12-14 weeks I had the PICC line in. As a result, I was able to get my treatment without interruption and to follow the protocol that allowed the tumor to be irradiated that saved my life.
You have a Blog, Nurses Advocates, that spells out the value of advocating for self or family member, do you have some closing remarks on the importance of being an active participant in decisions and all treatments in one’s care?
As a nurse of over 40 years, I learned that being a patient was very difficult. As a nurse turned patient, I have seen first-hand that the healthcare system is built for the healthcare team and not for the people who use it. Today, patients and healthcare professionals are starting to realize this and are working together to make the healthcare system more patient friendly. Patients want to be involved in their care and understand the options they have. When patients and their families are actively involved in the decision making process they have a stake in the game, are involved and better adhere to the plan of care which improves the delivery of care and contains costs.
I had such an awakening as a result of my experience as a cancer patient and wanted to find a way to use that experience to educate and empower patients, caregivers and all members the healthcare team. I use my experiences to explain the challenges we all face and provide tips to address those challenges. The best way I could think of to do this was through writing and sharing thoughts with others. I was fortunate to be introduced to a group of Nurse Bloggers and learn how by Blogging, I could use my voice to share information. As a result, Nurses Advocates was born.
By sharing my experiences, I am able to highlight trends, positive experiences and challenges I experienced. I use the Blog to share tips I leaned and ways that the healthcare team better can understand the challenges patient have when they are thrust into the healthcare system. At times, I invite guest bloggers who can complement my writings and share some innovative strategies they are have found useful.
I try to help healthcare professionals to understand that when patients are thrust into the healthcare system, they are in an environment they are not used to and WE have to help them work through the process with education and empowerment. In addition, patients/caregivers need to know they can ask any questions they have. Doing so, puts everyone on the same side and allows the system to work better.
Follow Ann at: http://nurseadvocates.com
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