Lessons from The Loss of a Patient

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Sooner or later, it happens to every patient advocate or navigator who works with patients on the medical aspects of their care (as opposed to other forms of advocacy, like billing or legal advocates).

One of “our” patients – someone whose hand we have held, who we have protected from problems in the hospital, who depended on our advocacy expertise as a way to make the rough road through disease and debilitation smoother… A patient we had built a comfortable and friendly relationship with, a patient we invested ourselves and our work in…

That patient dies.

And we feel like we have failed.

It’s the nature of advocacy work that patients don’t come looking for us until they have been diagnosed with something that will, perhaps, eventually end their lives.  That’s why they seek our help.  They are fearful, they don’t understand the overwhelming amount of information they are expected to immediately comprehend. They have decisions to make and feel incapable of making them.  They, or the caregiver who better understands their predicament, searches for, and finds, that one person who can help smooth the road…  the advocate.

And it’s our nature, as advocates, to want to rescue our patients from their fears and frustrations, and to save them from all that grief. But as one of my wise patient advocates friend reminded me,

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Doctor Recommendations – Do You? Should You?

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I was more than a little surprised in a conversation this week with an advocate who is not (yet) a member of AdvoConnection.  OK. That’s putting it mildly. I was actually stunned.

“Why do people feel well served by you?” I asked him.

“Because I have a beeline into all the good doctors,” he replied.  And when I asked him to explain further, he said it was because he knew the best doctors to recommend.

[Pause. Letting that sink in…]

In conversations with both long-time advocates, and lawyers, too… and honestly – what makes common sense – is that a patient advocate should never make a recommendation about a doctor.

Here’s why:

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Preparing Patients for Primary Care Troubles

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Good primary care physicians are becoming harder and harder to find.

You may not have noticed it yet, but I predict that a year from now we’ll find it almost impossible to find primary care doctors who are willing to take on new patients – at least any primary care doctor worth seeing won’t be doing so.

Smart patients AND their advocates know that today is THE day to be sure they have good relationships established with primary care doctors.

Why? Two major reasons:

First comes the fact that medical students spend some time in school, then choose their specialty area.  They contrast the excitement of surgery or saving a heart patient’s life, with the sniffly noses and broken legs of primary care. Then they figure out that as a surgeon or neurosurgeon,

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Patients’ Advocates in Hospitals – Going to the Line

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Updated March 2017

From time to time I hear from a patient who complains about a situation that occurred during a hospital stay – usually the spouse or child of a hospital patient.

The great majority of those notes say, “I spoke to the patient advocate in the hospital but they couldn’t do anything for me!”

When I reply, I explain that the hospital patient advocate works for the hospital – not for the patient. Hospital patient advocates usually report to the legal/risk management department in the hospital and get their paychecks from the hospital.  They help when they can, but the hospital gives them a line they just can’t cross.

That’s the fact I know.  And a couple of times I have met hospital “Patient Relations” people.  But until this week, I had never had occasion to try to work with them to help a patient.

This week’s hospital complaint email came from Donna (name is changed) who was a volunteer kidney donor to a friend – not even a relative – just a good friend.  She was flown from her home in another state to New York Presbyterian – Columbia late last summer, completed the surgery, and returned home.  Since then she has had a number of complications, she has been out of work, and she has been in pain.

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The Myth of Patient Advocacy Certification

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(Updated: June 2017)

Not a week goes by that someone doesn’t write to me asking about patient advocacy certification.  It’s confusing, because they read that there are courses that will help them become certified, and then they find other pieces I have written about the lack of a certification system.

So it’s time to clarify: There is a difference between earning a certificate – and being certified, even if Merriam Webster might tell you those two concepts are related.

“To be certified” carries with it an assumption that there is some sort of national (even international) standard set of skills, recognition, accreditation, or competencies and criteria that someone has met,developed or earned.  As if a national body of some sort has said “Yes – this person meets this high standard of education and capability, so we are blessing him or her with our certification.” “To be certified” may even mean to some people that some sort of governmental recognition in the form of a license or listing has taken place.

But there are no governments, nor nationally respected, nor generally accepted groups that have determined a group of standards, nor benchmarks, nor capabilities that supply a certification that is universally recognized. And that is the key:  none are universally recognized.

No such a certification exists – yet.*

The confusion comes from the fact… Continue Reading →

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Enough is Enough! Helping Elderly Patients Make Decisions

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One of our AdvoConnection members, Ken Schueler, shared a favorite article of his, published in JAMA a couple of years ago, and a good reminder of one of our roles as patient advocates.  Written by Dr. Jennifer M. Soyke, it tells about an elderly patient named Lisa who passed away from Genug Syndrome.

(Unfortunately, JAMA requires a subscription to read this piece in its entirety, so please forgive paraphrasing here – but I think you’ll get the point…)

Never heard of Genug Syndrome?  You won’t find it in the medical literature.

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What’s the Difference Between a Patient Advocate and a Geriatric Care or Case Manager?

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One of our APHA members asked me about these differences a day or two ago…  So I thought I would share my reply with you.

She had called on a nursing home to see if they had interest in recommending her services to the families of some of its residents.  The nursing home director replied that they had a team of geriatric case managers they worked with – and asked what services she, the patient advocate, could provide that GCMs could not.

Since she really couldn’t come up with a useful answer, she asked me if I knew the differences in service offerings….

A few thoughts:

1.  The first, obvious answer is that a patient advocate is available to assist anyone of any age – not limited to someone who is elderly, or at least over a ‘certain age,’ as a geriatric case manager would be.

2.  Part of the answer depends on who’s paying the tab for the advocate’s or care manager’s services.  If the nursing home or the county or state’s social services department is paying the tab, then the GCM is the not the patient’s advocate – she is beholden to the nursing home or the taxpayers.  On the other hand, if the GCM’s services are paid for by the family or the patient, then they, too, are performing patient advocacy services.

3.  Most Geriatric Care Managers don’t focus strictly on healthcare. Their work is usually broader, at least in the beginning, with some emphasis on finances, housing, and other aspects of life that change as we age.

4.  Our APHA member advocate might have stumbled on a good marketing idea, however… but not the way she thought.  We can guess that geriatric care managers may not have the skills or the interest in providing some services patient advocates provide every day, such as hospital bedside monitoring, or doctor appointment accompaniment.  It could be that patients’ advocates and geriatric care managers are “coopetition.”  (Read more about coopetition in The Health Advocate’s Marketing Handbook.

5.  One way patient advocates and geriatric care managers are identical:  they are both included and invited to participate as members of The Alliance of Professional Health Advocates.  As independent practitioners who serve patients, we want to be sure families find the help they need for their loved ones.

Do you know of additional differences or similarities?  Please share them with us.

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Is a Patient Advocate or Navigator a Qualified Medical Expense for Patients?

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In the process of writing about Health Savings Accounts (HSAs) and Flexible Spending Accounts (FSA) I began looking at what constituted a “qualified medical expense,” which is the list of the products and services the IRS lets us pay for tax-free.  They are those expenses that we can either claim on our taxes, or pay for through the use of an HSA, MSA or FSA. (What would the IRS ever do without acronyms?  But I digress…)

After looking at the list of expenses, I began to wonder whether a patient / taxpayer who hires and pays for a health or patient advocate can deduct that expense from their taxes or account?  Are we, as advocates who improve their healthcare experiences, deductible expenses?

So I went straight to the IRS horses to see what would come from their mouths… and what came from their mouths were big, loud question marks. They don’t know.  Advocates might be a deduction.  Or they might not.

Frustratingly, the process to figure out an answer requires people willing to test the system, at their own expense, which culminates in a “ruling.”  And even then, when there is a ruling, the answers might change.  (Is this a great country, or what?)

The best way to explain this is to use a metaphor – a parallel situation that resulted in a ruling.  Acupuncture.

Years ago, patients began to deduct the cost of acupuncture from their taxes. Once in awhile, one of those patients got audited.  For the first dozen or hundred or thousand (who knows?) the deduction was not allowed because there was no “ruling.” After awhile, there were enough people who fought for the deduction (paying their CPAs or lawyers to do so) that the IRS finally came up with said-ruling that said, “OK – acupuncture is now included on the list of qualified medical expenses (AKA deductions.)”

So, a couple of notes:

The CPAs and lawyers who successfully got acupuncture reviewed did so by showing evidence that acupuncture has a medical benefit. (ha!  If your doctor doesn’t believe in the value of acupuncture, you can tell him it must work – because the IRS says so!)  Our patient advocacy parallel would be that we need to show that patient advocates provide a medical benefit.

Individuals can ask their CPAs and lawyers to ask the IRS for a “private letter ruling.” That would mean that, before the patient deducts something, he asks the IRS to rule on it.  (I thought about doing this on behalf of AdvoConnection’s member advocates, however  IRS Guy told me it has to be done by individuals, on a case-by-case basis, and cannot be done on behalf of an organization’s members.)

I reviewed the publications put out by the IRS and found a few parallel expenses that are allowed.  From IRS publication 502, I see Christian Science Practitioners (who, like advocates, are not licensed), Nursing Services (these services also do not require a licensed nurse, but can provide everything from true medical services to washing and grooming) to (you’ll love this) guide dogs.  When I asked IRS Guy about guide dogs, he said they are deductible because they assist patients who are blind to get the care they need.  Honestly, of all the goods and services on that entire list, that is the best parallel for health and patient advocates – guide dogs. (In my own humble opinion.)

It seems clear that in order to become a bona fide tax deduction, a few things are going to have to happen.

1.  Patients will need to begin deducting advocate services in order to test the system.

2.  Some patients, early adopters, are going to end up paying tax and penalties for their advocacy services because no ruling will yet exist.

3.  Those patients should be able to find a CPA or lawyer to help them fight the extra tax and penalty by showing the parallel services that already exist on the allowable deductibles list, and using stats that show that patient advocates do improve a patient’s medical care.

4.  Eventually it seems like advocate services will be able to be deducted – but (like everything else) it will take awhile.

So — that big disclaimer! — I’m not an attorney, nor am I a CPA… but it’s a fair question that deserves more review, plus brave patients and caregivers who are willing to be the deductions guinea pigs by claiming these very important and necessary medical services patients’ advocates provide.

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