You know that feeling of helplessness you get when no one listens to you?  That sense that nothing you say or do will make a difference?  Knowing that life is happening to you and you have no control over where you’re headed?

That’s how patients feel when they are not empowered.  Drifting, helpless, unseen…afraid.

Patients in the United States who feel overwhelmed and unheard by the health care system may have worse health outcomes. 

As a patient advocate, you can help empower patients by filling gaps in communication, care, and compliance with health care plans.  When you advocate for a patient, you empower that person to be seen and heard by the health care system. 

Patients empowered by the help of a patient advocate have better access to healthcare and improved communication, care, and outcomes.

What is empowerment? 

“Empowerment means people having power and control over their own lives…It is about ways of working and supporting someone that means they can take control and responsibility for their own lives.” – Local Government Association, UK

Ideally, empowerment is when there are no limitations for people making decisions.  Barriers to empowerment may come in the form of education, gender, race, or religious affiliation. 

When my co-worker’s father developed cancer, her parents were at a disadvantage.  Both her mother and father were deaf.  My co-worker’s parents were unable understand the medical issues due to the hearing disability.  The family advocated for the parents and arranged for a sign language interpreter to be present at all doctor’s appointments. Using the sign language interpreter, her parents were able to be fully informed of the medical options.  Once the communication barrier was removed, both parents were empowered to participate in making decisions on treatment options.

As a patient advocate, you can empower patients by providing education, opportunity, and resources such as a language interpreter. 

Why is Empowerment Important?

Everyone wants the power to choose – to have the control to steer their lives in the direction they want to go.  Patients who have the mental capacity and are fully educated on their options should have the power to make their own decisions.

Patients know themselves and their medical history better than anyone else.  Patient advocates leverage this knowledge to empower patients and help them make the right decision for them and their situation.

Betty lived alone after her husband passed away.  Her physical abilities declined as she grew older.  It became clear that Betty could no longer take care of herself.  Betty’s family discussed living arrangement options with her.  She could move to an assisted living facility, move in with one of her children, or continue living in her home with assistance from an outside agency hired to help her dress, provide meals, and take care of her home.  Betty chose to stay in her home.  Betty’s family supported her decision by advocating for her and making arrangements for in-home living assistance.  Betty was able to live happily at home for several years before passing away.

The best patient advocates empower loved ones by investigating all possible solutions.  Advocates share potential options for the patient and the financial, practical, and health outcomes likely for each one.  Armed with this knowledge and the support of an advocate, patients can confidently make an informed decision for themselves. 

What Happens When a Patient is NOT Empowered?

Have you or a loved one ever received a difficult diagnosis or experienced a sudden change in health status?

Questions arise like “What do I do now?” “Why me?”  “What caused this?”  “Am I to blame?”. 

It can be difficult to maintain a positive attitude.  Disempowered patients who have or develop depression, may experience insomnia, higher risk of heart attack, weigh fluctuations, or fatigue.  All of these symptoms work against the body’s ability to heal and support itself.

Sophie Sabbage, author of ‘The Cancer Whisperer’ and cancer “thriver”, cautions against giving up hope.  Sophie herself was given a terminal diagnosis in 2013.   Sophie recounts this disempowering experience :

“To me, at a first encounter with a new doctor who had read my file, ‘You’re difficult!’ To which I replied, ‘No, I’m Sophie’ and extended my hand.”

Patient advocates can support their friends and loved ones by guarding against disempowering statements or attitudes.  Advocates know that patients are not their health status.  Patients are whole, unique individuals within a health continuum.  Wise advocates treat the patients as whole persons and ensure that others recognize their patients the same way.

What Happens When a Patient IS Empowered?

Empowered patients are “all in” when it comes to their health care.  They make positive diet and lifestyle changes.  Empowered patients take their medications reliably and as prescribed without skipping doses.  Ultimately, empowered patients have better healthcare outcomes.

As Rachel Bond, MD, FACC says, “By empowering patients to take co-responsibility for the management of their condition, it may not only enhance medical outcomes but also lower costs.”

As a patient advocate, you can help patients take control of their healthcare.

How Do Patient Advocates Empower Patients?

“Empowerment comes from taking full responsibility for every aspect of what it means to be human – mental, emotional, spiritual and physical.” Nicola Lucie

Here are ways you can help empower patients to the fullest:

  1. Education.  Collect information from reputable sources (such as physicians, specialists, peer-reviewed research papers, national organizations – i.e. American Cancer Society, and National Institute of Health).  CAUTION:  Google may be a source of basic information, but do not trust everything you read on the internet!
  2. Help the Patient Take Responsibility.  Organize information and help the patient work through questions with their healthcare providers to help manage expectations.  Equip patients to play an active role in their own health care, treatments, and health care decisions affecting their future.
  3. Build a Health Care Support Team.  Let your patient know that they are not alone.  Patient advocates help build a support team of health care professionals and home care.  The team may include family members, friends, pharmacists, physicians, therapists, and home health care workers.  Each person plays a vital role of support for the patient.

Conclusion

As a patient advocate, you can improve a patient’s communication with healthcare experts, overall care, and adherence to care plans.  This, in turn, improves healthcare outcomes and lowers healthcare costs. 

Advocating for your loved one empowers them to take responsibility for their own healthcare.  When you advocate to help empower your loved one, you elevate them to the next level of healthcare – a level where your loved one lives a healthier, happier, more meaningful life.