Why Can’t Patients Be Their Own Advocates?

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Imagine… you suffer chest pains and are swept off to the ER. The pain meds leave you too groggy to make good decisions. Who will help you?

Or… difficult symptoms result in a diagnosis that leaves you stunned. You leave the doctor’s office remembering very little of what you’ve been told. Now you aren’t even sure what to do next.

Or… you’ve begun to find it confusing to keep track of all your medications. You’re concerned you’ll make a mistake. Which ones are you supposed to take with food?  Or on an empty stomach?  What about having that glass of wine at dinner – will it affect the medicines you are taking?

Next week you’ll be admitted to the hospital for knee surgery.  You have friends who have acquired infections from surgeries – one even died.  You can’t advocate for yourself when you’re drugged and in pain… who will sit by your bedside to keep you safe?

Your loved ones live too far away to be much help.  Sometimes you just need a ride to an appointment, or someone to run to the pharmacy to pick up your prescription.

These are just a few of many scenarios that require us to find some assistance to be sure we get the best care and stay safe.  Whether you have a debilitating disease, a new diagnosis, or you just feel so lousy that you can’t think straight – it’s time to call in a patient advocate to help you.

New patient advocates often find themselves having to explain what they can do to help a patient that a patient or caregiver can’t handle him or herself.  Depending on the circumstances, having a patient advocate by your side can actually make – or break – your ability to heal, or even just cope.

Can you think of other scenarios that require a professional private patient advocate?  Why not share them in the comments!

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Do I Have to Be a Nurse to Be a Patient Advocate?

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The answer is simple.  No.

So why do I ask this question?  Earlier this month, while attending the NAHAC Conference, the question was asked by a number of people.  As if the qualification to be an effective patient advocate relied on a nursing education.

Now please don’t get me wrong.  I am a huge supporter of nurses and nursing, in its many important forms.  I’ve written many times at About.com about nurses, nurse practitioners, and why I believe training as a nurse is far more patient-centered than other forms of medical training.  Most of my commentary comes from my appreciation for the “whole patient” approach most nurses provide.  I’m a fan – a BIG fan – of nurses and the nursing model for patient care.

Here are five reasons why a patient advocate does not need to come from a nursing background:

1.  Patient advocates actually perform a number of services, many of which have nothing to do with nursing.  Some are medical bill reviewers, some do research and writing about medical problems…. Nursing isn’t the right background or training for these kinds of services.

2.  Patient advocates are facilitators, but they are not decision-makers.  Patient advocates do not perform medical functions.  They provide options and background information to their patients, but never make decisions on their patients’ behalf.  Since they aren’t making medical decisions, they don’t even need a medical background.  (Not to say a medical background wouldn’t be helpful.  It might be.  It just isn’t necessary.)

3.  No matter what the background of the patient advocate, he or she knows when it is time to find helpful resources to help his or her client.  If the advocate is a nurse, then she knows when to call in a doctor or an insurance expert.  If the advocate is not a nurse, then she knows when to call in a nurse if one is needed.  That means a patient advocate can have almost any type of background and experience…. He will simply set up his system of resource people accordingly.

4.  Patients who need an advocate’s help are all over the map when it comes to what they can afford.  Someone who is not a nurse, or does not have medical training, will charge less (or should charge less) in many instances than an advocate who does have nursing training, making him more affordable than someone who does have a nursing or medical education.

5.  Finally – to make my points – some of the best known and most effective patient advocates, real pioneers in our emerging business of patient advocacy, have no nursing experience or education in their background.  Ken Schueler, perhaps the premier patient advocate in the United States and abroad, does not have an MD or RN after his name. (He did study at Sarah Lawrence in its patient advocacy course.). Elisabeth Schuler Russell learned her skills while advocating for her baby daughter.

Smart advocates will find their training where they can, when they need it, for a particular reason.  For example, an advocate who decides to focus on cancer patients might take courses in understanding oncology.  Or an advocate who needs help understanding extensive medical terminology might take a course to better understand it.

All nurses are patient advocates.  But not all patient advocates need to be nurses to begin with.

If you are considering a career as a patient advocate, then start where you are planted.  But start.

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Updates on this post:

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What Does a Patient Advocate Do?

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That’s a good question — what does a patient advocate do? And there are a handful of answers, depending on the kind of help you need.

Some advocates help you with insurance claims, or review your hospital bills, then negotiate those that are wrong. Others might sit with you at home while you convalesce, or help you understand a difficult diagnosis and an extended list of treatment options. In fact, there’s a long list of services patients or health advocates might provide.

Most of these are simple to understand, because this kind of help has actually been around for awhile. The type of patient advocacy that seems most confusing – but can have the biggest impact on your positive medical outcomes – are medical / navigational advocates.

These advocates will sit with you in the doctor’s office and ask questions, or will help you make a difficult medical decision, or will sit at your bedside to monitor your hospital care, to be sure you get the right drugs, or don’t acquire an infection.

Here’s a metaphor to help you better understand why this is important: Fifty years ago, if you wanted to buy a house, you found someone willing to sell, and the two of you worked out all the details. If you needed a mortgage, you got it from a bank or a savings & loan. If you needed a lawyer to draw up the deed, then you hired one.

But over the years, particularly as credit problems started to arise and the legal requirements got tougher, we began to see real estate brokers establish an expertise as the go-between – between the seller and the buyer. These brokers have a much larger bank of knowledge than someone who only buys or sells a home two or three times in a lifetime. They understand the process, know home values, mortgage options, negotiation, legal requirements – they know far more about everything related to the transaction of buying or selling a home than most of us do. Today, very few home transactions take place without a real estate broker to orchestrate them.

Unfortunately, the healthcare system (no matter what country you live in, or what political party is in office) has become so tenuous that patients really do need a go-between to help them navigate. If you are in the US, you have an additional burden dealing with health insurers. Doctors can’t do it alone anymore, nor can nurses. Without that expert to step in and shepherd us, we patients may succumb not to our disease or condition, but to the problems in the system that is intended to help us.

There is excellent care available! But it takes these experts — these professional private patient advocates — to find it and make sure we patients access it.

Whether you need help navigating the maze of healthcare — or help with your medical bills, insurance claims, home health, eldercare, a midwife or doula – or even legal help – you can find it at AdvoConnection.

Update: December 2017

 

Are you considering becoming a patient advocate? You might be interested in:
So You Want to Be a Patient Advocate? Choosing a Career in Health or Patient Advocacy

Find even more resources for health and patient advocates here.

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AdvoConnection Blog Launch

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As Every Patient’s Advocate, the most frequent request I hear is to try to make a connection between a patient, or the loved one of a patient, and someone who can help navigate medical care on behalf of that patient.

Here is a list of the kinds of services they request:

  • Preparation for the doctor’s appointment
  • Accompaniment to doctor’s appointments, tests and procedures
  • Medical research to learn more about diagnoses and treatment options
  • Translating medical language (medspeak)
  • Navigating HIPAA laws and privacy matters
  • Insurance choices, filings, negotiations
  • Elder care / geriatric care
  • Home health services
  • Organization / administration / paperwork
  • This blog will discuss the status and options of patient and health advocacy.

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