Day 21 –  PATIENT ADVOCACY – Listening, Learning & Supporting

Advocacy = “public support for a particular policy or cause;  the act of supporting a cause or proposal; intercession.”

So what does “advocacy” mean in layman’s terms?  An advocate is someone who listens to all information available and makes a decision based on that information.  This may be in relation to themselves, a cause that they are promoting, or on behalf of another.

In relationship to health care, a patient is an advocate for himself – he hears, reads, learns and studies available information, processes it, and makes a decision for himself regarding how to proceed.

Sometimes, the patient needs or wants some help.  The information available might be beyond their scope of understanding.  It may feel overwhelming in the presence of his fear about his diagnosis, prognosis, and treatment options.  He may have concern that his wishes are contrary to his family’s wishes. He may be in a physical or mental state where he is literally unable to process and discern information, or to verbalize his desires.  He may be afraid to speak up in the presence of ‘authority’ of medical professionals, or family, who recommend something that he really does not want for himself.

In these cases, a caring and trusted advocate may be able to step in to help the patient navigate his health care journey and decisions in the various stages, from a new diagnosis through end-of life care.

Many types of advocacy exist:

• I’d venture to say that we would all strive for Self Advocacy, in that we know ourselves and our wishes better than anyone.  We aim to express our own needs and interests. It has been studied that 40 to 80% of information, recommendations, and treatment instructions shared in a doctor/patient appointment can be ‘blocked’ or immediately forgotten due to anxiety and distress, pain, memory related concerns, fear, etc.   Sometimes we need or would like help.
• Peer advocacy can come from other people who have shared your diagnosis or treatment path and are willing to share their story and similar challenges with you or your team.  They may be able to help you see new or different ways you could view the benefits or challenges of a new treatment that they also tried, for example. They may hold your hand through nausea and say ‘I’ve been there, and this too shall pass’.
• Family and friends as advocates might be asked to participate in patient/doctor appointments to listen, prompt and ask questions, take notes for review later and be a “second set of ears”.   He may be the one to intercede if you, as the patient, have clearly stated you want ‘x’ treatment and the doctor recommends ‘y’, if you are unable or unwilling to do so.  This advocate might be the person you ask to share outcomes, educate, and impart the professional recommendations with family after your appointment. This person could also be the person chosen to make decisions, based on your wishes, in the event you become unable to make or verbalize decisions for yourself (as a ‘healthcare power of attorney’, for example).
• Independent or Professional advocates may be hired to evaluate, without emotional bias or connection, your course of care, and legal advocates may be appointed to do so.  Your nurse and professional health care advocates also protect your privacy and are ethically bound to intercede on your behalf for your best interests.

A caring and trusted advocate is “in your corner” and acting in your best interest.

RESOURCES:  JRSM (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC539473/ ), https://www.nia.nih.gov/health/doctors-appointments-tips-caregivers, http://www.ncfdadvocate.org.uk/index.php/services/different-types-of-advocay, https://www.cphins.com/patient-advocacy-is-an-ethical-and-legal-duty/, and https://www.hopkinsmedicine.org/health/healthy_aging/caregiver_resources/the-power-of-a-health-care-advocate

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