There’s nothing like a medical emergency to turn your world upside down – or at the very least, keep you from blogging for a while. This spring, I spent several months working with a patient through a series of health crises, not as a professional healthcare navigator, but as a family member. The experience allowed me to view with fresh eyes what so many people go through each day: the shock of a loved one being suddenly, seriously ill; the dizzying array of medical specialists involved; and the rapid-fire, sometimes life-altering decisions that must be made both during and after the crisis. Even with 20 years of nursing experience and specialized advocacy training, it felt overwhelming, and renewed my commitment to help others navigate their own emergent and chronic medical situations.
When the crisis resolved and my own loved one returned home to a (mostly) manageable health maintenance program, I was able to reflect on the process through a more objective, professional lens and identify several critical touchpoints in my family member’s care that a “layperson” advocating for themselves or a loved one might not know – but should:
1) Question falling into the “complications statistic” – There is a percentage of the time that a procedure will cause complications. If complications arise for you or a loved one following a surgery or invasive medical procedure, it’s okay to ask – and ask again – if there may be additional causes behind the complication that should be treated. For example, if a surgical incision isn’t healing properly, is that truly just having the bad luck of being part of the “complications statistic”? Or is the patient not getting enough protein due to dietary restrictions to support healthy wound healing?
2) Get moving – Studies have shown that, in the majority of cases, patients will recover faster and experience more positive health outcomes the sooner they are able to get up and moving after surgery. However, as I have seen firsthand, mobilizing post-surgical patients is time-consuming and can fall by the wayside during a busy shift for hospital staff. If at all possible, tell your care team that mobilization is a priority for you, and ask your nurses and aides to help you. Even a brief walk down the hall, or even around your room, can contribute to a healthy recovery.
3) Get to know your care team – If you or a family member has been admitted to a hospital for an emergent cause, chances are your team includes multiple specialists and hospital departments. Keeping everyone straight – and knowing who to contact about what – can be like watching a soap opera for the first time. Ask everyone who comes in their name, their specialty and their role in your care (take notes if you can!). If you receive conflicting advice or opinions about your course of treatment and feel unsure who to trust or how to get everyone on the same page, don’t be afraid to get the hospital’s patient advocate involved to help.
4) Follow up on follow-up care – Because multiple specialists are often involved in caring for the same patient, you or your loved one will be “assigned” to one specialty or another for follow-up care. Be aware: the best person for one job may not be the best person for another. This is particularly true for follow-up care, especially if you or your loved one has a chronic condition that will require long-term management. In my family member’s situation, for example, the surgeon was expert at the required surgery, but wasn’t able to provide as in-depth or nuanced an understanding of the long-term outcomes of, or care for, the underlying condition. Again, if you have any concern that your follow-up care isn’t being adequately addressed, don’t hesitate to involve the hospital patient advocate to help you or your loved one.
If you need help advocating for yourself or a loved one during a medical health crisis, or assistance with managing recovery or health maintenance, call us at (913) 553-6226.