Patient Advocacy Training
Patient Advocacy Training
The need for creating a Patient Advocacy role grew out of both necessity and demand.
The role of a Patient Advocate is to represent the wishes of their patient to the medical world, and to help them attain their health related goals. It is also to provide support to the Care Provider, if there is one.
Care Providers are the ones who are working hands on, providing the day-to-day care of their loved ones. Often times they are stressed, exhausted and overwhelmed by the requirements of meeting the needs of another. Many are also busy maintaining a household full of additional responsibilities and perhaps even generating an income to support their families. Care Providers are in the trenches, so to speak. In many situations, Care Providers are also Patient Advocates.
If a patient is capable of meeting their own day-to-day needs and doesn’t have a Care Provider, but is not capable of meeting the complexities of their medical needs, a Patient Advocate can help. The Patient Advocate is trained to really listen to the desires of the patient and to help them attain their health care goals.
Who can become a Patient Advocate?
Any family member or trusted friend can be trained to fulfill this role.
The single most important aspect of the Patient Advocate is to learn to listen to the patient without judgment or interjecting one’s own wishes or beliefs. Listening with an open mind and an open heart offers an opportunity to truly know what the patient wants, what they believe they are capable of, and finding the resources to help them achieve their health care goals.
This training program addresses: protocols for following complex medical conditions, ways to deal with adversity within the health care system, and how get what your patient wants when the medical model is not in agreement. Understanding the role insurance is playing in your patient’s care, is also addressed.
Medical systems are becoming more complex.
Although tremendous efforts are being made to better meet the patient’s needs with compassion and understanding, there seems to be a growing need to help the lay person understand the complexities of this system they are now entering. For those entering the medical system for the first time, there is a new language to learn and a new understanding of how things get done.
If you are the patient newly diagnosed, trying to navigate all of this on your own, I invite you to consider finding someone to walk with you on this journey to wellness. The guidelines I provide will, hopefully, minimize the fear and concern someone might have in accepting this opportunity to share this journey with you.
Donna’s Story
Donna came to me with one desire — to live. She had undergone a donor bone marrow transplant in 1998, and now, nearly twenty years later, all of her attending doctors had agreed she had less than three months to live.
As I visited with Donna I learned that she felt she had more life left in her to live.
She expressed a strong belief in her faith, sharing that she had a vision whereby she saw herself giving back to those who were struggling along the same path she had been traveling. She saw herself strong enough to stand at a podium and speak about her journey surviving the transplant, at an annual picnic sponsored by the Stanford University Medical Center for bone marrow transplant survivors. The picnic would occur in May, seven months from our first meeting.
As enthusiastic as I was to do my very best to support her on this vision quest, I was also aware of where we were at the moment.
Donna was too weak to hold her head up, lifting her arms was difficult, if not impossible.
She was no longer strong enough stand up nor walk. A beautiful woman, now in her early 50’s, she had once owned her own hair design salon and enjoyed a fashionable life, raised her children and served as a business partner to her loving husband; she now laid nearly life-less in front of me. Her voice heavy with labored breath, she shared how she once stood five feet seven inches tall, always slender and very active, she now weighed seventy-four pounds and her organs were threatening to shut down from lack of nutrition brought on by her inability to eat. Her mouth and tongue were riddled with abscesses. Missing many of her teeth, she could no longer chew her food. Her throat was no longer capable of allowing food to slide down due to the lack of hydration in her tissues. Her skin had turned hardened and would crack open, bleed and refuse to heal, when bumped or when pressure was applied by her own body weight, bone against fragile tissue, against bed.
Donna had been living with Graft Versus Host disease resulting from the donor bone marrow transplant, the very same bone marrow transplant my own daughter had undergone just two years after Donna. I did not know Donna at the time.
I was meeting her for the first time, nearly twenty years after my own daughter succumb to the impact of Graph Versus Host.
Now I’m being invited to join this woman on her own journey to survive and thrive. The enormity of this opportunity to meet with my own inner story as I assisted Donna with her journey, did not escape me. Maybe because of my own personal experience of the ravages of Graph Versus Host disease, I was gifted with another opportunity to not only help Donna, but to also heal my own wounds around the horrors of this condition.
Listening carefully to Donna as she shared her story, her vision and her inner knowingness, I was able to begin to devise a plan.
Because her husband was struggling to maintain his new home construction business, Donna needed a Patient Advocate. Someone capable of managing her doctor appointments, follow up on care and when necessary - push against the medical system until she got results. None of which was within Donna’s capability. Chemo therapy and radiation had left her brain functions sporadic at times, but mostly, suffering from malnutrition robbed her of her ability to think. Starving, her body had turned against itself and was devouring precious tissues to survive.
The first obvious requirement for Donna to have a fighting chance at living, was to get a feeding tube installed. Her attending medical staff stalled her request, offering an appointment months away, time she did not have left according to her doctors.
I asked Donna to assign a trusted member of her family to become her Patient Advocate.
I met with the Advocate on several occasions, devising a plan, providing guidelines to follow and methods to navigate the medical system to ensure Donna had a fighting chance at life.
When all efforts failed to get Donna back under the care of her original bone marrow transplant team, I encouraged the Patient Advocate to take Donna to the emergency room of Stanford Medical Center, and refuse to leave, should the emergency doctor refuse to admit her. I provided the Advocate with a form letter acknowledging that she was not willing to be responsible for Donna’s death should she be found to be starving to death and refused medical treatment. Adding that the attending emergency room doctor assumed all responsibility for Donna’s death, acknowledging that her death was related to complications of starvation.
The letter proved necessary as the emergency room doctor attempted to discharge Donna, stating she was in fact dying from malnutrition and that there was nothing they could do.
When asked to sign the letter, the doctor refused. Instead he left the room.
Twenty minutes later members from the Bone Marrow Team arrived and Donna was immediately admitted to the Bone Marrow unit. She was provided with a feeding tube and her health gradually improved.
Six months later, Donna weighed one hundred pounds, a weight she had not experienced since her transplant. Her body now receiving enough calories to support the affects of Graph Versus Host disease, resulting symptoms have become less problematic. She can now eat solid foods with care and attention to textures and focusing on high calorie content foods. She supplements her nutrition with vitamins and minerals necessary to support her system.
None of these advances in her health would have been possible without her Patient Advocate. It was the role and dedication of the Patient Advocate to not only navigate the medical system, the insurance system, but also to fight when necessary, demanding the very best care for her patient.
Today Donna enjoys an active life with her husband, working by his side in construction, and is looking forward to speaking at the May picnic at Stanford University Medical Center, California.