Patient advocacy is a relatively new field, which is gaining traction as patients struggle to navigate the healthcare system. So what exactly does a patient advocate do?
As a patient advocate I support and empower patients, guiding them through today's complex, confusing and changing healthcare landscape. When a patient and his or her family are grappling with the stress of illness, it's easy to get overwhelmed by treatments, medical options, follow up care and insurance issues.
My job is to sort through the confusion, allowing the patient and their family to make educated decisions about their medical options, based on their personal values.
This includes the navigation of medical treatments from multiple providers, coordinating care and facilitating communication.
Sudden and chronic illness can be shocking to the patient and their family. All of a sudden they are thrown into an unknown world, with almost a different language. Between trying to understand the diagnosis, options for treatment, the full consequences of each medical decision and fighting the insurance company, things soon become overwhelming.
In a recent case I guided a patient and his family past obstacles in the medical system. I was called in at the beginning of this case, because when the patient had a heart event, he also has many other co-morbidities including end stage renal disease and COPD.
After an initial cardiac cath, the doctor determined open heart surgery would be required. This meant a transfer to another hospital accredited for open heart surgery and finding the best surgeon. Despite the co-morbidities the initial surgery went well.
The next few days were superb. The patient was taken off the vent earlier than expected and everything was going swimmingly.
Unfortunately as the swan Ganz, or pulmonary artery catheter, was being removed, the patient had a massive stroke. Now the patient and his family were looking at very different options than the ones they came in with. Once again, my job as a patient advocate was to ensure the patient's family understood all the medical options, as they were now making the medical decisions for the patient, who could not speak.
This included considering all options, including discussions of life support and priorities that would guide that conversation. The crux of the discussions revolved around either removing him from life support and allowing him to die or keeping him alive. If he survived, family members wanted to know what his cognitive abilities would be. Would he be able to take care of himself, walk and handle basic functions of daily life? Or would he need 24-hour help? This was a very thought out guided and repeated conversation on the patient's wishes concerning quality of life.
However, these conversations were complicated by the fact that because of the severity of his illness and his multiple diseases, the family was receiving conflicting information from different physicians and caregivers. This was exacerbated also by the fact that the patient had a very large loving family and various people had different interpretations of the situation.
To ensure the continuity of the patient's care and to facilitate communication among the multiple physicians and the family members, I called a meeting, which every doctor and the other major caregivers attended. This allowed everyone to understand and be on the same page concerning the patient's diagnosis and prognosis.
It also allowed the family the opportunity to make the informed decisions they needed to make to ensure their loved one's care. This ensured the patient received "patient-centered care" based on their values and beliefs and understanding all the medical ramifications. Only then can the patient and family make truly informed medical decisions.