Wednesday, May 21, 2014

The Courage to Seek Care

One of the things that my students and I have observed time after time in working with patients is that many we are caring for in the hospital have delayed seeking care. Once they did seek care, many ended up getting bad news, such as a terminal diagnosis or finding that they have not only what they were admitted for, but other serious illnesses. 

Faced with these real-life cases of delay in seeking care, we began to wonder:  WHY? 
  • WHY did they wait so long? 
  • WHY didn't they get help in the early stages, before this got so bad?
                 and then 
  • WHAT could we have done to prevent this?
Many researchers, clinicians and scholars have described care-seeking theories and have researched care-seeking delay. A variety of theoretical models have attempted to explain care-seeking and to identify ways we can prevent delay. Many of these theories focus on health knowledge and access to care. However, in talking with my students, and reflecting on my own experiences lately, I've come to realize an important issue that most theories and providers may not adequately recognize:

It takes COURAGE to seek care.
  • A person who does not feel right may be afraid of the possible causes of their symptoms, fearing the worst. 
  • A person with chronic illness has usually been through the pain, anxiety and life-interruptions associated with emergency medical care, testing, procedures and hospitalizations. It's hard to make a call for help when you know what will happen next.
  • A family with a loved one who is getting more and more frail often knows the end is near. They just don't want it to be yet.
Yes, it often requires great COURAGE to seek care.

Courage is defined on Google as: 
the ability to do something that frightens one; strength in the face of pain or grief. 

I like this definition because it accurately reflects the challenges faced by patients and families in seeking care. It can be frightening to seek care for symptoms: not knowing what to expect, fearing the worst or knowing what's going to happen. It often takes strength to to seek care in the face of the physical and emotional pain and loss you know you and your loved ones will experience. Patients and families who seek care are courageous. 

The courage to seek care is rarely identified. Rather than recognizing and reflecting on how difficult it may have been for the patient and family to seek care when their health was changing, providers often reprimand them for not seeking care earlier. However, I believe this is a counter-productive and paternalistic approach. Is a patient who feels scolded by their provider likely to want to encounter that feeling again, especially after going through the many challenges of a symptom work-up, medical treatment or hospitalization? Is someone who is vulnerable, going to be helped by this approach?

Instead, I propose that we support and encourage patients and families during the process of seeking care; that we acknowledge the difficulty of making the decision to get help. That we do all we can to make the healthcare experience easier so that when they come to us for help, they find support and relief rather than pain, suffering and fear. I believe this type of response will help strengthen patients and families, helping them find the courage they need to seek care again in the future. 

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