by Betty Long, RN~Life, as you know it, can change in an instant. It happens every day, in hospitals and emergency rooms around the country. Regardless of employment status, insurance coverage, or ‘good living,’ you or someone you love may be rushed to an emergency room with a critical health emergency.
Amidst the lights, the machines, the people and their stethoscopes, your world, as you once knew it, has changed.
And if you are not the patient, you are likely to quickly become part of the team caring for your loved one and supporting your family through the uncertainty of the crisis.
Take for instance a 38 year old father of two who is driving home from work one night and loses control of his car, ending up on the side of the highway where rescue crews extract him from the car and airlift him to the nearest trauma center. His wife arrives to the hospital and is greeted by a blur of trauma doctors, nurses, and hospital personnel. They do their best trying to explain what has happened to her husband and what efforts they are making on his behalf. Her head spins, trying to wrap her brain around not only what has happened but what she can do now, while her husband clings to life.
Or perhaps the crisis evolves differently, in an exam room perhaps, when the oncologist comes in and gently explains that the biopsy reveals a malignant tumor that will require surgery and following surgery, chemotherapy and radiation. And the only thing you heard was “cancer.”
Responding to either of these crises takes courage and patience and strength and a sundry supply of personality characteristics that you may not know you have. It was Eleanor Roosevelt who said, “A woman is like a tea bag; you never know how strong she is until you put her in hot water.”
But, as the health crisis evolves, do this—reach out to someone who can provide support as a patient advocate. This person could be a family friend, a co-worker, a neighbor, even a family member, but try to enlist the support of someone who can ‘run interference’ for you, who can ask questions, who can make suggestions, who can interact with non-essential clinical staff if needed, and who can ease the burden of keeping all the balls in the air.
Trust me, when you are going through a health crisis, there is no manual to reference. And even if there was, who has the time or the focus to read it? You are in a crisis. The situation is uncertain, it is unexpected and it is threatening. You need to have someone who can support you through this—if only short-term.
There are also professional patient advocates who can be nurses, social workers, lay-people, and sometimes even physicians. They are sometimes offered through your employment benefits (if you’re lucky enough to have a job with benefits) so if you think of it, call your Human Resources representative to check the availability of this service. Patient advocates can also be hired privately, usually on a per-hour basis. Depending on the nature of the crisis, you may want your advocate to have critical care nursing experience so that she can not only explain what may be happening, but also guide you and your family through the initially critical 72 hours of an emergency.
In the less-emergent, but just as emotionally critical cancer or other life-threatening diagnosis, this clinical resource can also be a huge support to identifying centers of excellence and top-notch physicians. She may also offer to accompany the patient to appointments so that she can listen, take notes and ask appropriate questions related to the discussion and treatment plan.
Patient advocates have always been around the healthcare world, but in the last fifteen years, their presence has been magnified not only by insurance industry changes, but by patients and families demanding a more positive experience in the healthcare system.
While we all hope that a health crisis doesn’t come our way, the best way to try to get through it is to be prepared. Think about doing your homework beforehand. Find a patient advocate in your area whom you can call when you need support. Based on our experiences with our clients in the last ten years, you will be glad you did.