As a nurse, I was the one in our family who had healthcare experience and was looked to by family and friends when a healthcare challenge emerged. But when I was diagnosed with a Brain Tumor in November 2014, it was my husband who stepped in as my caregiver and healthcare advocate.
Corky and I have been married for 29 years, and he has always been my biggest supporter as I moved forward in my career. He has always been the levelheaded member of our family. He always remains calm and respectful regardless of the situation so he handles challenges much better then I do. He has no healthcare experience except for the stories he has heard from me and my friends over the years. Yet, when the time came, he stepped up, took charge, and was my advocate through the most challenging time of my life.
When I got sick, he did his best to listen to the doctors and ask questions so he understood what they were telling him about my diagnosis, treatment options, and prognosis. I was cognitively not able to participate so Corky had to make decisions regarding my care and my life. Luckily we had discussed our wishes so he knew me, what my wishes were, and he advocated for me.
When my diagnosis was made, he realized this was a very serious situation. He called a good friend of mine and a fellow nurse case manager to help him understand what he was being told and what the options were at this point. My friend, Marilyn was there to listen, support and help as she could. She was able to come to the hospital when we met with the neurosurgeon who explained the plan of care. It was at this meeting, they both realized I was not in the most appropriate hospital for the severity of my condition. As my advocate, Marilyn stepped into her case management role and took to the phones, till she found a neurosurgeon at the University of Miami who agreed to take my case. I was discharged from the small community hospital and went to see the Neurosurgeon the next day.
I was very sick when I met with the neurosurgeon at the University of Miami. He recognized this and admitted me right away so I was in a safe place and could be stabilized. He scheduled the brain biopsy for the next day so they were sure of the type of tumor I had and could decide on the plan of care. Once the pathology report was back, I was referred to a hematologist who specialized in the type of tumor I had. I saw him right away and he ordered aggressive chemotherapy to be started. I truly believe this expedited care saved my life.
My husband took another piece of advice from Marilyn, that proved helpful throughout my treatment. She suggested he get a binder to keep all of my records. Corky did this and collected reports, test, scans, lab work and notes that detailed my care and recommendations from everyone who saw me along the way. He took his own notes on what he was told by the various professionals who cared for me. He brought that binder to each appointment and when I was an inpatient in the hospital he had the binder with him every day. When the team made rounds, he listened to what they said and asked questions. Many times he was able to produce a report or a lab test that they needed but was not readily available in the chart. They would thank him and proceed with the orders.
Having Corky at my side and armed with useful information saved me from getting a test repeated or experiencing a medical error. Many times the team would be talking about a direction they wanted to go and my husband would mention something my doctor had told him. He asked that they check with the head hematologist before writing the orders. Each time, they came back and said they were going to follow the current plan of care as directed by the Hematologist.
Once I improved and was able to participate and ask questions, my husband stayed involved and reminded me of various things that I was not aware of. He was always patient, respectful and willing to listen. Yet, he did not hesitate to ask a question or suggest that a resident, nurse or another member of the team check with the attending physician to ensure what they suggested was in line with my plan of care.
My experience reinforced to me, that every patient needs an advocate when they are thrust into the complex world of healthcare. It is evident to me more than ever that the health care system is set up for the system and not the patient or their caregivers. Patients need to have someone by their side who is there for them.
This is because so much information comes at you, at such a rapid pace at a time when you are least able to comprehend it. Having an advocate allows another person(s) to hear the information ask questions to help to clarify things and be able to repeat things over and over so you and other family members can make understand what is going on, so all are clear on the plan of care being designed on your behalf.
Advocates can be a family member or friends. For most of us, this is all we need, another set of eyes and ears. But for a complex situation, having a professional patient advocate is important.
Advocates are objective members of your healthcare team and are in place to ensure you have a voice, are able to ask questions and do research to look at alternatives that might match your plan of care so they meet your goals. Advocates address barriers and help to ensure your care needs are met.
Independent Patient Advocates are paid privately by the patient or the family, so they are not under the restraints of the organizations which they work. There are Hospital Advocates in place who are also able to help. They are in place to represent you and ensure your needs are met when you or a loved one are in the hospital. Generally, they have the autonomy from the Hospital leadership to be your voice and to advocate for you when issues arise. In addition to Independent and Hospital Advocates, there are others such as Billing Advocates to help you review medical bills, address denials by your insurance company and negotiate bills so you can set up a payment plan that protects you. There are also Housing Advocates who can help find alternative living arrangements when needed.
There are a number of ways you can find an advocate. Many have websites so they show up when you do a simple google search. When considering an advocate, take the time talk to them to make sure you are both clear on what they can do as well as have the experience to meet your needs.
Keep in mind advocates do not provide hands-on care, but rather do research, meet with your health care team to understand the plan of care to ensure it meets your individual needs. Advocates work on your behalf to break down barriers that exist in our complex system and ensure you are safe and have the information and resources to navigate the system and make decisions to address your individual needs. They ensure you have a voice in your care and are at the center of the health care system.
Here are some resources to help you learn about the emerging practice of Patient Advocacy.
Patient Advocate Certification Board: Advocates come from a variety of backgrounds. The Patient Advocate Certification Board has now certifed over 600 professionals as Board Certified Patient Advocate.
Advoconnection has a database where you can enter your zip code to find a patient/health advocate.
Aging Life Care Association: The Aging Life Care Association (ALCA), a nonprofit association with over 2,000 members. The mission of the organization is to lead the community of Aging Life Care Professionals™ through education, professional development, and the highest ethical standards.
Patient Advocate Foundation: a not for profit organization that helps people find help by eliminating obstacles in accessing quality healthcare
National Association of Healthcare Advocacy (NAHAC) is the is the professional organization for healthcare advocates dedicated to the improvement of patient outcomes through continuing education, promotion of national standards of practice, and active pursuit of policy change that lead to excellent person-centered healthcare. You can add your zip code to find an advocate in your area.
Greater National Advocate: An online database of patient/heatlh advocate. Enter your zip code to find an advocate in your area.
My Care Alliance: is an organizations that offers membership to a variety of professionals who are in place to help a variety of people. Enter you location to find an advocate in your area.
Today, there is a call for all of us to be active members of the healthcare team. Most of the time, we can do this for ourselves, but when you have a health care challenge that is complex and life changing, you need an advocate to be there for you!
If you have questions or want to share how an advocate helped you during a time of needs, please leave a comment in the comment box or email me at allewellyn48@gmail.com
Have a good week!
