Healthcare Advocates work with people of all ages. While Healthcare Liaison does work with seniors, we also provide services to infants and children and their families, young adults, and middle-aged adults: everyone needs help with healthcare! It’s not just about insurance, although that is confusing enough in itself: it’s about the complex decisions that arise in medical care.
An example happened a few months ago when a parent of a six month old called me. The labor and delivery had been difficult, and the baby was born with serious birth defects. It is the most anguishing outcome for any parent: the healthy baby they expected was not the baby who was born. Instead they have a child who will need lifelong care and has an uncertain future. How can I help this family?
Working with infants and children and their families presents unique challenges. Families are grappling with guilt and fear that come with having a child with complex medical problems. Parents do not expect to have a seriously ill child. There are sometimes difficult decision to make about what is the best care and where can it be obtained–and who will pay for it.
With the family mentioned above, I identified several problems:
* the parents felt responsible for their child’s condition (“If only we’d done something different during the pregnancy, this wouldn’t have happened”)
* the medical team met frequently with the family, but was not repeating the information enough times for the parents to “get” it. (Health educators say people generally need to hear information a minimum of three times on three separate occasions to be able to incorporate it and use it in a productive way).
* the medical decisions the family needed to make were complex: did they want their baby revived if he stopped breathing? What about using a machine to help him breath?
* the parents weren’t utilizing all of their support systems to assist them with decision-making
* the other children in the family were bewildered by the events
What I did to help:
* talked with the medical team to let them know the parents confusion and encouraged individual members of the team to talk with the parents rather than the whole group at once.
* Helped the parents identify family and friends that could be supportive in helping them make medical decisions; contacted the pastor at their church so he could provide support
* Sat down with the family to explain in simple terms what the medical team was saying, translating medical language into sentences they could easily understand. Answered the other children’s questions with answers they could understand
* Walked them through the decision-making process for the medical issues they needed to reach consensus on
* Met with the parents and the medical team to assist the baby’s parents in expressing their wishes
I think one of the most important things that I did for this family was to sit and listen as they talked. I could be a sounding board and a third party to help them talk with each other and reach a decision that grew from an understanding of their choices.
I had answered my phone and was speaking with an adult daughter who was exhausted from taking care of her 89 year old Mother. She told me her Mother had fallen several times at home that week and had refused to go to the doctor. The daughter was frantic. What was wrong? Was her Mother dying? How could I help her?
The stress of caring for a family member can be enormous whether you leave nearby or across the country. It is difficult to imagine how it feels until you’re in the middle of it yourself. What could I do to help this family?
* See the Family– Every effective Advocate needs to see the family in their own home/apartment or living environment. Many Advocates may work by telephone, but this does not give as accurate a picture. Video conferencing is also a great approach to use if computer access is possible and there is not an advocate in the immediate area.
* Take a good history–How has her health been before this week? Does she have on-going medical conditions? What drugs is she taking? Who are the doctors she’s seen before? Did she like them? Have there been sudden changes in her health? What kinds of activities does she do every day? Is Mom still able to make decisions about her own healthcare or does her daughter need to step forward and assist her?
* Always get a complete list of medications–many times people (of all ages) are on multiple drugs. An Advocate can check for drug interactions quickly and suggest a thorough review by a pharmacist or physician.
* Look at the home environment–are there ways to make it safer? Does Mom need a walker? Should a request be made for a Home Health Nurse or Physical Therapist? Is there additional help at home so the daughter gets a break from care giving? If not, are there ways to get this inexpensively?
* Develop a Plan with the Family–An Advocate draws up a comprehensive plan, with all interested people participating in the planning, of how to proceed so everyone knows what the goals are. The plan will also help everyone see when the Advocate’s services are no longer needed.
What Happened with this Family–When I met with them, I realized Mother’s hesitation about going to the doctor was for an all-to-familiar reason: she didn’t want to go to the doctor because she was afraid she’d end up in a nursing home. I could reassure her that a doctor’s visit would help us see how to help her. She saw her doctor, had x-rays and I asked for and received an order for Home Health physical therapy. The doctor reviewed the many medications she was on and suggested discontinuing one of them. The doctor could tell her she was, in fact, not dying. Additional help from her church group gave the daughter some breaks in care giving.
An experienced advocate can make this happen for people of any age!
Next Week: How Healthcare Advocates work with young children and families.
I am delighted to announce that the 2nd Annual Meeting of the National Association of Healthcare Advocacy Consultants (NAHAC) is fully organized and scheduled for Washington DC, November 4-6 2010!
Everyone–Healthcare Advocates, Consumers (that’s all of us who receive health care!) policy makers and legislators—are welcome to attend the three-day gathering of this professional association. The schedule is just amazing:
* Come learn how to set up an advocacy business and tips on developing a marketing strategy
* Listen to expert Healthcare Advocates and Patient Navigators detail case studies and solutions
* Be inspired by “serial healthcare entrepreneur” Tim Godzich who grew a “consumer driven health plan” company (and find out what that means!)
* Delve into the healthcare insurance maze and learn how to master it
* Learn about complementary and alternative medicine (CAM) approaches to healthcare
* Understand the complexities of participating in Clinical Trails
* Expand your “tool kit” for navigating the healthcare system for someone of any age
There is much more: visit the National Association of Healthcare Advocacy Consultants (I founded it just a year ago, and we now have over ninety members) at www.nahac.com. Join the Association, come to the Conference and expand your knowledge: See you in Washington DC in November!
In this newly emerging field of healthcare advocacy, what is it that a Healthcare Advocate does? How can they assist you?
The short answer is: An Advocate can help you navigate through complex medical situations for yourself, your child, your parent or other family member. But still, what does that mean?
As I currently see it, after 25 years in the field of discharge planning and medical social work, and six years running my own Advocacy business, Healthcare Advocates assist their clients in the following ways:
Making informed choices regarding available options for care and resources within the healthcare system; working with clients at all “levels of care” in the healthcare system, explaining diagnoses and procedures, assisting in considering alternate treatment options, clarifying personal values as they relate to medical treatments, coordinating medical services, case management and discharge planning, arranging community-based services, assisting with complex medical decision-making, helping arrange second opinions, securing services from other medical systems, and advocating for clients with insurance systems and healthcare providers.
These are a wide range of tasks, and some advocates will specialize in some tasks and not others. It’s important to know what you most need help with, and then look for an Advocate with the training and background to help you in that specific area.
Equally important, however, is: what does a Healthcare Advocate refrain from doing? What services cross the line from Advocacy to providing direct service to a client or patient? I think Healthcare Advocate Services should not include the following services:
1. Giving second opinions;
2. Direct, hands-on medical care of any type, including, but not limited to the following: physical exams, blood draws, wound care and surgical procedures.
Why is this distinction important? Because once someone moves to “direct care” of a client or patient, it changes the dynamic; it may bring other parties (i.e., insurance companies) into the picture. From the client’s or patient’s view, it becomes difficult to see whether the direct provider is acting independent of these other parties. Today’s world of Healthcare is moving to transparency, and Healthcare Advocates can help ensure that process.