Sleep Deprivation Spells Opportunity – and Responsibility

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Saturday night (well, OK, in the wee hours of Sunday morning) across most of the US and Canada, we “sprung forward” our clocks, resulting in lost sleep, and at least a day of being totally thrown off because the day seemed… well…. just weird. Since most of us don’t work on a Sunday, the day of adjustment helped us acclimate, and then – life goes on with a longer day of sunshine through next Fall.

But what if you had to lose that sleep every few days, then re-acclimate every few days?  What if you spent your life in a constant battle with the time of day, and the loss of sleep? What if you had to put in 28 hour days of work and then, somehow, try to catch up on your sleep, returning just 8 hours later to do it all again?

And then what if your job was brand new and involved saving lives, because you were a first-year resident doctor (no, they don’t call them interns anymore)… and your patients, who were hospitalized so YOU could take care of THEM, were constantly at the mercy of your lack of sleep?

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Repeal of the ACA… So Now What Should We Do?

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Last week marked the inauguration of the 45th president of the United States. No matter your feelings about him or his politics, he’s here to stay, presumably for the next four years, alongside a Republican majority in Congress.

The first order of business?  Repealing the Affordable Care Act (ObamaCare), the legislation under which many of us are able to get, and afford, healthcare insurance, and access to the care we need. With the stroke of a pen, the icing on the repeal cake was completed within the first few hours of the new president taking office. Congress had already baked the cake’s layers just a few days before.

The predictions about the effect of this rollback are dire not just for those who depend on ACA insurance, but for all Americans. The non-political Congressional Budget Office estimates 18 million people may lose not just their health insurance, but their ability to get health insurance, too, amid new discussions about pre-existing conditions and high-risk pools.

We hear those politicians say they plan to improve the situation, that insurance will become more affordable, that they won’t take away the ability of Americans to access care. Lots of talk, but so far nothing that looks like a real, implementable plan. Just lots of speculation.

So what are we left with?

The status of healthcare delivery in America has never been in such a state of flux as it is today.

Whether or not you are insured through the ACA yourself, whether or not you have clients who are insured through the ACA, as health and patient advocates we have to ask ourselves, “So what should we do now? How do we help our clients? How does this change our services?”

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2017 State of Patient Advocacy and the Alliance of Professional Health Advocates

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As we kick off 2017, let’s look at the past year in review. What is the status of this profession of health and patient advocacy?  How well is APHA serving the needs of patient-clients and its members?

We began 2016 with a similar reality check.  The bottom line was that our profession is growing, but not nearly fast enough!  The need for our services is so very much larger than the number of people to fill it. That status has not improved; in fact, the need is bigger than ever before.

In that same vein, but without including the more “ancient” history that post included, here are some stats for you to peruse this year, in hopes you’ll see the need to launch your own advocacy practice (if you haven’t already done so) – or expand its scope (if you are already in practice) – in order to be there for the vast numbers of patient-clients and caregivers who need us. Continue Reading →

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What the Presidential Election Results Mean for Patient Advocates

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When President Barack Obama ran for office in 2008, healthcare reform was already an enormous and contentious topic.

In those days, I was invited to speak to dozens of groups of patients and caregivers to help audiences sort out the issues that comprised healthcare reform so they could, on their own, decide which aspects (if any) were important to them. From the concept of “universal” healthcare through a public option, to coverage for pre-existing conditions, to portability, tort reform, free vaccinations to develop “herd immunity,” and many more, we looked at the whole of the topic as objectively as possible.

Before I started each talk, I would challenge audiences to figure out which side I was on by the time we were finished – reform? or no reform? It gave me great satisfaction that a show of hands at the end usually resulted in about a 50-50 split, demonstrating as much neutrality as I had been able to muster. It was somewhat surprising, because I was very much in favor of reform and truly not objective about the subject at all.

What I never mentioned to any of my audiences was this: that the bottom line for patient advocates was that healthcare reform was, simply, job security.

The reason: no matter what became of healthcare reform (and, of course, history tells us it became Obamacare, AKA the Patient Protection and Affordable Care Act or the ACA) – no matter what decisions became the law of the land, Americans were going to be confused by it all. They would be confused about costs, access, costs, access, access, and of course, costs, all of which could have huge detrimental effects on their health and care.

The more confused they became, the more they would need a health or patient advocate to help out.

Thus, job security.

That brings us to the 2016 presidential race, and victory for the candidate who said he will work to repeal the ACA.

No matter what your feelings about the outcome of last week’s presidential election, there are a few things advocates can take to the bank:

  • The healthcare system will go into further upheaval as the ACA is dismantled.
  • Patients and caregivers will find themselves more confused and frustrated than they have ever been.
  • The moneymakers in the system will seek new ways to maintain and grow their own profits, shifting and being shifty, making it even more difficult for patients to get the care they need at a cost they can afford.
  • The demand for private, independent advocates will grow – even more – and there won’t be enough advocates to help the patients and caregivers who need them.
  • Yes – all this adds up to even more job security.

We can’t anticipate exactly what changes will be made, but that doesn’t really matter. People are scared and confused now – today – because they just don’t know what to expect. They didn’t know before the election and they feel even less in control now. Even through the ACA, pricing has gone up in most states, and people feel like they are getting less and less for their money. Their confusion and frustration (and anger) is going from bad to worse.

They need help. They want help.

If you are absolutely serious about growing a successful advocacy practice, then NOW is the time to prepare. There will be no better time in history to establish your practice (if you haven’t already) and to expand it (if you’re already in business.)

Here’s how.

If you are just getting started:

If you’ve been in business for awhile:

For all professional advocates:

riper

What are you waiting for?

LEARN ABOUT APHA MEMBERSHIP | FIND MORE REASONS PATIENTS NEED ADVOCATES

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Revisiting the Question: Advocate and Proxy, Too? Making Decisions for Clients

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Two years ago we asked whether a health/patient advocate can also be a decision-maker for her client in the form of being a healthcare proxy (the patient-designated person who makes end-of-life decisions for the patient, based on wishes the patient has legally documented). Since the ethics and standards of the original advocate role very specifically state that an advocate WILL NOT and CAN NOT make decisions for a client, would the new role of proxy create a conflict-of-interest?

The scenario shared was that “Gwen” had been Mrs. Smith’s advocate for a long period of time and they had developed a close relationship. Mrs. Smith, at the age of 90, wanted Gwen to be her healthcare proxy to help determine (if necessary) when it was time to allow Mrs. Smith to die, instead of conceding to the healthcare system’s attempts to keep her alive at all costs.

Could those two roles be performed by the same person? We didn’t answer the question. Instead, we used the opportunity to develop a best practice by asking for input and opinions from those in practice at the time. The question:

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Our Clients Need This ONE Skill the Most

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Twenty years ago, prior to self-employment and work in patient empowerment and advocacy, I was the marketing director for my local community college.

In so many ways I loved that job. It was different every day and allowed me to meet and get to know people I never would have known in any other way. It required me to get out into the college community to meet faculty, other administrative departments, and students. It required me to have good relations with the press, and because it was during a recession, it required me to be creative and clever to bring in new students. Community colleges attracted so many non-traditional students — those who were older, or had been laid-off, or wanted to change careers; they had such interesting backgrounds and dreams. And the biggest challenge – the advent of using the internet for marketing. Can you imagine? Attracting students by using the cool new surfing tool – the World Wide Web!

As I said… I just loved that job.

But, unfortunately, yes, there was a downside, too.

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Survey Says! The Results Are In

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We privately paid, independent, professional patient advocates “tend to be older, white, female, more highly educated, and have other medical training or past careers in related professions.”

…. or at least that is one conclusion drawn by the surveyors — those who built, issued and analyzed the first National Health and Patient Advocate Survey.*

Both private, self-employed advocates, and employed advocates (hospitals, insurers, employers), were surveyed. Whether or not you were one of the folks who took the survey, if you have any interest in patient or health advocacy as a profession, you’ll be interested in the results.  They were issued June 30 – you can download the report from here.

But that’s not the best news from the results… The best news is…

(drumroll please!)

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Would You Draw a Line?

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Early in my patient empowerment work, I was invited to write a column for my local daily newspaper. Over the next six years, I wrote hundreds of columns on every empowerment topic imaginable from how to get copies of your own medical records, to how to research a drug your doctor prescribed for you, to the (what we called at the time) “healthcare reform”. My column ended in 2011, but much of that work still stands today, some as useful today as it was then.*

As a result of those columns, I became a resource person for many locals who were struggling with some part of their healthcare. Many were scared or angry with the parts of the system that didn’t work for them. Some were just desperate to find a solution for an incurable disease or life-altering damage from an accident.

One such gentleman was Glenn, a man who had developed a glioma, a tumor that had grown tentacles throughout his brain. He was a well-educated man, an architect by trade, and was frustrated by what he saw as the continual roadblocks to his care. The glioma was inoperable. He had sought second and third opinions. His neurologist wanted to treat him with chemo, but Glenn refused chemo because he felt as if exposure to toxic chemicals might have been the cause of the glioma to begin with.

He first contacted me in 2006, and we stayed in touch, discussing many aspects of his care, until he died in 2012. Throughout those years he approached me with questions, and together we sought ideas and solutions, many of which subsequently ended up in one of my books and several of my newspaper columns. From his surprise when I wrote in one column about changing doctors, to the story I’m about to tell you about seeking help from a bogus cancer treatment center, I got to know Glenn quite well. He became a friend, and I learned so much from our interaction. I was not acting as his advocate by the definition we use today for professional patient advocates. We simply bounced ideas off each other.

While I respected his intelligence and the career he had built, I also learned from Glenn what desperation does to a patient. Which leads me to the topic of today’s post.

About two years into our friendship, Glen’s glioma was growing, and he still refused chemo. He had left his job, and spent his days in search of something – anything – that would make the tumor disappear.

For example, he found a “doctor” online who promised him that if he bought her DVDs, and prayed many times a day, his tumors would dissipate. He spent hundreds of dollars on DVDs. He prayed and prayed. He was so convinced her approach would work, until, as you might guess, it didn’t.

He found several other possibilities of similar import over the next couple of years. He would ask my opinion, and was always disappointed when I didn’t react with his same enthusiasm. My assessment was usually based on cost – not just money, but the cost to his physical well-being and emotional investment, too.

Then one day he sent me a link to a clinic he had uncovered, convinced it offered him THE solution, because it offered him THE cure. Continue Reading →

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