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Patient advocacy and caregiving

by Isabel Fawcett

Caregivers must successfully balance patient advocacy and direct care responsibilities, each of which requires different skills and mindsets. Here are some tips on how to maintain a proper balance.

In my human resources (HR) profession, I'm first a business person, then a human resources professional. My self-imposed professional hierarchy ensures consistent focus on the business of my employer(s) as I strive to seamlessly integrate the body of HR knowledge to my employer's daily operations. HR serves and supports my employer(s)--not the other way around.

By comparison, my self-imposed caregiver's hierarchy remains patient advocate first, then caregiver. Patient advocacy leads my caregiving lineup because providing care to a chronically ill elder is not about me, my preferences, or medical theories of care--however impressive such theories may be. Direct care or assistive care is provided to an individual(s) 'who was not born yesterday, literally or figuratively speaking.

Institutional Patient Advocates

Some larger medical centers have Patient Advocates or Guest Relations Representatives on staff. In theory, such paid patient advocate positions are created to fulfill organizational roles of hospital-patient liaisons--positions theoretically focused on improving communication and quality of care for hospitalized patients. Generally speaking, patient care advocates are paid by the hospital. There is no national certification or uniform standard required to be hired as a Patient Advocate by any hospital.

Unpaid Patient Advocacy and Caregiving

Before I became a full-time caregiver to my mother, I always openly said that I hoped and prayed that whenever she died, her death would be on her terms, not anyone else's. Simply stated, it is my hope that she would be able to live her life to the end as she has wanted.

In my childhood, she consistently said to anyone and everyone who listened that her end-of-life objective was "to die with my boots on." She does not believe in artificially prolonging life. Neither does she want to lay on any hospital bed unconscious, mouth wide open, vegetating. She has always lived her life with enthusiasm and lots of laughter and hopes to depart life without undue medical interference.

Mom's philosophy notwithstanding, there is an old Spanish saying, "El hombre propone, pero Dios dispone," which means "Man suggests or proposes but only God ordains." In turn, a wish list never hurt anyone. Chronic physical ailments notwithstanding, her focus remains living with gusto.

Unified Vision of Caregiving

Providing assistive care is limited in scope and includes:

  • understanding and following doctor's orders
  • actively monitoring patient safety, physical, emotional and cognitive symptoms
  • providing direct and other assistive support as required

Integrating patient advocacy into care routines is not as simple. The blended strategy of caregiver-as-patient advocate includes:

  • Ensuring that treating physicians are well-informed about the patient's worldviews, including possible cultural influences prior to any rush to medical treatment
  • Actively monitoring patient non-verbals such as occasional stunned or overwhelmed silence, to facilitate improved physician-patient communication
  • Leading and facilitating physicians and patient in discussing and timely follow-up of multiple medical issues as an integrated whole

A Direct Example of Patient Advocacy

My mother has always been overly cautious about undergoing medically invasive procedures. It takes time for her to get to such a point. She may need to hear the pros and cons more than a couple of times from the same diagnosing physician and a trusted loved one before she ever commits within herself to undergoing surgery. In the process, she may say very little, yet she is thinking, sometimes worrying, non-stop. In her case, silence is never consent to surgery.

As her patient advocate, my responsibility--now that she is older and even less vocal with her physicians--is to ensure that her doctors understand that barring any medical emergency, rushed medical decisions are not acceptable to their patient.

When her oncologist speaks with her, he intuitively recognizes that it may take more than one visit with him to ensure she is well-informed on the medical issues, and more inclined to remember that he is a physician whom she has always trusted for his superior technical skills and compassion.

Why Advocate as a Caregiver?

"Belief can cure and belief can kill," is an Old World saying.

A patient's beliefs and life philosophy need to remain at the forefront of direct care, medical treatment, and caregiving. Some patients speak up for themselves, while others think more and speak less. Some patients are too sick and tired to care, much less to speak. Someone needs to advocate on behalf of patients when they cannot or will not speak for themselves.

The patient's cooperation with medical treatment and caregiving support is integral to promote the confidence and commitment necessary for patients to achieve successful, or at least stable health outcomes.