Patient Accompaniment — In Good Times and Sad

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Patient Accompaniment — In Good Times and Sad

This post was contributed by Lisa Berry Blackstock, Soul Sherpa® a mentor for those who are building an advocacy practice.   When a patient advocate decides to offer patient accompaniment services, the most common motivating factor is a desire to help a patient navigate the healthcare system more effectively. Better results can take the form of streamlined communication with healthcare providers, ensuring proper diagnoses and plans of care, and minimizing unnecessary diagnostic procedures and medical interventions when lifestyle changes might be all that’s needed. There are cases, though, when patient accompaniment cannot realize better results. Specifically, in the case of patients diagnosed with terminal illnesses, it’s helpful to ask yourself a serious question: Can I be a professional source of resources and emotional strength if my client is dying? When my father was diagnosed with metastatic non-small cell lung cancer in 2001 at age 61, and given a five percent chance of surviving a single year, I fell into an emotional tailspin of anticipatory grief so powerful I wasn’t able to emotionally support myself, let alone my father, during his final months of life. I’ve always regretted my inability to be stronger for him. I hoped there might be some…


 

 

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Licensed, Certified, Uppercase, lowercase: Where Are You?

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Licensed, Certified, Uppercase, lowercase: Where Are You?

Andrea is confused, and if Andrea is confused, others among you are, too. She’s just the one who asked. (You might want to thank her!) Andrea posted a comment on a previous APHA Blog post called Revisiting the Mean Girls in Our New Advocacy Environment asking me to follow up now that we have certification for Patient Advocates.  Her confusion (excerpted, but you can read it all here): In my opinion, the PACB certification does not nullify or restrict a state license in nursing. It feels like these two knowledge bases go hand in hand. I cannot find any information on your caution to RNs to “specifically NOT promote their work as being nurse-related, and not to cross the line”. I see nothing in the linked ethics or competencies that restricts any kind of nursing interventions other than prescribing medications, and actual medical diagnoses.  In other words, I believe she is asking, “Why can’t I be a nurse and a patient advocate, too?” And the answer is…. (drumroll please….) Not only can you be both, but you as a licensed RN may find occasions when you need both skill sets. The distinction comes from the circumstance under which you are working, as described here in two parts. First – Let’s be sure we understand terminology: A licensed professional is someone who has met the criteria by the state he or she lives in to earn – and pay for – that license. Whether it’s a nursing license or a driver’s license – the individual has met the GOVERNMENT’S criteria, if any, and none other. Sometimes a state insists upon proof that the person can do what they say they can do when they seek a license. A nurse might be required to prove he or she completed nursing school and/or passed an exam. A driver must take a state-supplied driver’s exam and road test. A bar or restaurant might require a liquor license. But licensing criteria doesn’t always have a professional basis. Further, licensing does not, by itself, speak to competency (although in some cases, the criteria lean on proofs…


 

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The Fine Art of Follow Up

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The Fine Art of Follow Up

What if I told you that you could make or break your advocacy practice by spending an additional 3-5 minutes after each client interface? Yes – it could be that simple. Hold that thought as I explain… All human beings like and appreciate acknowledgment – almost any kind of acknowledgement – for actions big and small. If you hold the door open for someone, you appreciate a thank-you, or even just a nod of the head from the person for whom you opened the door. If you give someone a gift, you want them to thank you. If you send it to them in the mail, you at least want to know it arrived. If you phone someone and must leave a message, then you appreciate it when they call back. If you invite friends for a meal, or just a cup of coffee, you want to know they enjoyed themselves and appreciated your efforts. On the flip side: If you hold the door open for someone, but they don’t acknowledge you did so, you may think them to be rude. If you give someone a gift, and they don’t thank you, or even acknowledge it arrived in the mail, you consider not sending a gift the next time. If you leave a message for someone but they never call or write back, you wonder why they ignored you, and you may think less of them because of it. If you invite friends for a cup of coffee or a meal, you expect them to thank you. If they additionally thank you later by following up with an email or phone call (or, OMG, a handwritten note!) then your bond will be stronger, and you are more likely to invite them again sometime. These examples should make it clear that beyond simple courtesy, appropriate follow-up to any client interface should be at the top of your list of things to do in order to grow and strengthen your business. This sort of follow-up takes very little time or effort, but can mean a huge difference in any relationship going forward.…


 

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The Folly of Driving to the ER

This post has been shared by the AdvoConnection Blog. It was written with a patient-client audience in mind, but might be useful to you, too.

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The Folly of Driving to the ER

Hugh, a gentleman of about 68 years, lived alone. Hugh wasn’t feeling well. It was just a general feeling that something – who knows what? – just wasn’t right. After a short while, Hugh walked over to see Phil, his next door neighbor. Phil agreed to drive Hugh to the Emergency Room. It took them about 30 minutes to get there. Hugh signed in, and together he and Phil sat down in the waiting room. Within 15 minutes, Hugh keeled over, out of his chair, and onto the floor. He had “coded.”  Nurses and doctors immediately rushed over with the “crash cart” to jump start Hugh’s heart; they brought him back from the brink of death. He was immediately admitted to the hospital and had surgery that afternoon… But Hugh died a few days later, never having regained consciousness from the attack he had suffered in the ER. Hugh was my friend. He was my neighbor. He left behind his wonderful dog, his adult children (who all lived out of town and we didn’t know them), and many of us who just adored him. Now we are all angry at Phil. You might wonder why we would be angry at Phil. Afterall, Hugh asked Phil to drive him to the ER. What a neighborly thing to do – right? No. Wrong. Absolutely WRONG! The thing is – Phil has had two heart attacks himself. He should have known better than to drive Hugh to the hospital himself. He should have insisted on dialing 9-1-1.  And that is why we are angry at Phil. When you, or someone you care about has odd symptoms that could involve something life-threatening, never drive them to the ER yourself. Let’s suppose Phil had insisted on dialing 9-1-1.  Let’s even suppose Hugh had dialed 9-1-1 himself.  The EMTs would have arrived very quickly, and realized immediately that Hugh was in the midst of a heart attack, or cardiac arrest. They would have treated him immediately, stabilized him, and then transported him to the hospital. There would not have been that delay in getting treatment which was then too little too late. It’s entirely possible Hugh would have survived and we would all still have our friend among us. I know… you’re thinking “Yeah, but what if it’s nothing?  How embarrassing and possibly expensive that would be!” That’s very true. That’s your choice. Let it be…


 

 

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How Much Do Patient Advocates Charge?

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How Much Do Patient Advocates Charge?

If someone asked me what question I am asked most frequently, I’d tell them the answer is some variation of this family of questions: How much do advocates charge for their services? What is the hourly rate for patient advocates? How much do patient advocates make? How much money do patient advocates get paid? What is the average amount a patient advocate charges? We’ll begin by answering these questions with a question (bad form, but it makes our point…) How much does it cost to take a vacation? What does it cost to go to college? How much more can I make if I get a new job? Think about those questions for a minute: they are actually kind of silly. In fact, there is only ONE answer; the same answer to the questions about advocates, cost, and pricing. It depends. So of course, now you want to know… “Depends on what?” There are two answers: It Depends: Answer #1: What advocates charge varies based on services, niche, education and experience, certifications, professionalism, geographic location … Services:  Advocates who sit by a hospital bedside don’t charge the same as advocates who negotiate hospital bills, who don’t charge the same as an advocate who gets an insurance claim approved, who don’t charge the same as the advocate who is on retainer with an elderly person who needs accompaniment to her doctor appointments month after month. Even an average here wouldn’t be helpful. Niche:  Advocates who work with Solos (Elder Orphans) have a specific expertise. As do advocates who reconcile and negotiate medical bills. As do advocates who focus on cancer care, or those whose expertise is mental health or pediatrics, or any other niche – the name for a specialty area. Even averaging within a niche wouldn’t be helpful because all the other factors listed here must also be taken into account. Education and Experience: A nurse who is providing medical-navigation services can charge more than someone who is not a nurse.  A doctor who is focusing on cancer advocacy can charge more than a nurse with the same experience. But a…


 

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To Thine Own Self Be True (with apologies to William Shakespeare)

This post has been shared by the APHA Mentor's Blog. It was written to help you start and grow an advocacy practice.

It is provided so you can find it in a search here at myAPHA.org, but you'll need to link to the original post to read it in its entirety. Find the link to that post at the end of the excerpt.

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To Thine Own Self Be True (with apologies to William Shakespeare)

This post was contributed by Cindi Gatton, Pathfinder Patient Advocacy Group a mentor for those who are building an advocacy practice. Find Cindi’s Mentor Listing.   As professional patient advocates we come to our discipline with a deep desire to help people through the vagaries of our healthcare system, a system that can swallow up even the most informed consumer. Our clients trust us to be able to step back from the situations that are upsetting and unfathomable to them to help them make truly personalized, informed decisions. This is not work for the weak of heart. In so doing we pledge to amplify our client’s voices, but not become it. This would seem to be easy, but in effect, it can be harder than we might think. Every individual has a filter through which they process their healthcare values. Perhaps one of the most important things we have to do as advocates is to become conscious about these filters, first our own, and then our clients. To facilitate that, I’ve used a tool that comes from the book by Jerome Groopman and Pamela Hartzband, Your Medical Mind. How to Decide What is Right for You. New York : Penguin…


 

 

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When Is an Advocate Not an Advocate?

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When Is an Advocate Not an Advocate?

Twice in the past week, I heard from people whose APHA memberships expired, explaining why they didn’t renew. In both cases excuses in the form of complaints about their memberships were made. A little bit of research turned up the facts that those complaints were at least misguided. I responded to each of them about their frustrations. In both cases, they felt insulted. Now, don’t get me wrong. I receive criticism and suggestions on a regular basis, sometimes including good, usable, feedback. I’m always appreciative of constructive feedback and ideas even if it’s in the form of criticism. That’s how we improve the benefits APHA offers. Further, I recognize there are many reasons someone might not want to renew a membership. Sometimes health challenges have gotten in the way. Sometimes someone just decides independent advocacy wasn’t a good fit for them. Most of the time I hear nothing at all. But that’s not what these exchanges were. In both cases they were making excuses by using APHA membership as the whipping post. Not kosher. Where have they been for the past year?  Why did they wait until their memberships expired to complain? I wonder how they think they can be good advocates for other people if they don’t even advocate for themselves? Of course, I don’t intentionally insult people. I may push back, and I may be blunt, but that’s because, as a business owner, one must be sure that her work isn’t misrepresented. Here are examples. See what you think. We’ll begin with Complaining Advocate A (CAA) who decided not to renew her membership because 1. she hated logging in with a username instead of an email address, and 2. because she had trouble getting her password to work on her phone, blaming our log-in system for that problem. Yes, seriously. But I addressed both excuses. As you can see by the login below (found at www.myAPHA.org ) one can use either a username or an email address to log in. Regarding the trouble with passwords on a phone – that’s a problem with her device and not her…


 

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When Granny Doesn’t Want to Cross the Street

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When Granny Doesn’t Want to Cross the Street

You have probably heard that old joke about a Boy Scout who was determined to help a little old lady cross the street. After a number of attempts and iterations, he finally picked her up and carried her to the other side of the street, set her down on the sidewalk, and left, having completed his good deed. But the joke was really on him – because the lady had no interest in getting to the other side. She had wanted to stay right where she was. We frequently receive requests to take Granny across the street. They come in the form of Unmet Needs requests from well-meaning friends and family who want an advocate to help someone they care about. Too many of those patients are just like the little old lady, and too many advocates are trying to play the role of the Boy Scout. How? What we know is that not all patients want an advocate. This has nothing to do with need; I think we can agree that almost every patient NEEDs an advocate. But for many reasons, if a patient doesn’t want help then it should not and can not be forced on him or her – no matter how family or friends feel about it. Yet, every day we get calls, or email outreach, or inquiries in some fashion from well-meaning friends and family. Here are examples from a glance at the Unmet Needs List: My friend has chronic lyme disease. She is at the end of her rope. She needs a person to help her In so many ways… My mother has been in the hospital for the past 5 months. She has been seen by multiple doctors, and all are unsure what is causing her confusion… Looking for advocate to assist 60 year old man with mood disorder navigate through paperwork, treatments, etc… My son is in the hospital in critical condition. He’s being mistreated… My friend and coworker’s brother ( only living immediate family) has been diagnosed with lung cancer and has become, just in a matter of weeks has become…


 

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Freedom, Flexibility, and Other Twisted Notions about Self-Employment

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Freedom, Flexibility, and Other Twisted Notions about Self-Employment

When I decided for the first time in the 1980s to go into business for myself, my father thought I was crazy. “Why would you want to work 12 hours a day for yourself when you can work 8 hours a day for somebody else?” he asked. “Because they are the 12 hours I choose, Dad!  I might work 12 hours today, but I can work just 4 tomorrow, or even take the day off… my choice! And – I get to do what *I* want to do.” My response was intended to help Dad better understand the flexibility of being self-employed. But he didn’t really get it. Not then anyway. And, it turns out, neither did I. To many people, it seems like the working-person’s nirvana: the notion that when you are self-employed, you work for yourself, call all your own shots, and can be as flexible as you want to be. No boss to lord over you or to require you do things you would rather not do. No having to call in sick if you don’t feel well enough to work. No co-workers who drive you nuts. No having to work with nasty people. No having to justify knocking off early one day, or taking a long weekend – or not even working at all. Freedom… flexibility…. the ultimate way to make a living! But the truth is – that flexibility is often a crock. It’s a figment of the soon-to-be self-employed person’s imagination. Turns out – Dad was at least partially right. Today I’ll share with you some important distinctions that neither of us realized then, but have become so very apparent since. Since that conversation with Dad, I’ve been self employed on and off for about 21 years in service-related businesses (not advocacy, but the basics are the same); long enough to provide you with the real low-down on the flexibility misconceptions of self-employment – with the important addition that I wouldn’t trade it for anything. Let’s begin with that “No boss to require things from you that you don’t want to do”…  In fact,…


 

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Independent Advocacy’s Three-Legged Stool of Success

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Independent Advocacy’s Three-Legged Stool of Success

In response to one of the most frequently asked questions I get as the director of The Alliance of Professional Health Advocates – I might be providing an answer you don’t expect. That’s OK! Because if you don’t expect it, then you may hear it even more clearly than you otherwise would. And that can only be good. I hear the basic questions in a number of formats: Do I need to get a degree or certificate to be a patient advocate?  Followed by, “what degree” or “what courses do I need to take?” Do I need to be certified to be a patient advocate?  or   Do I need a license to be a patient advocate? I already have a degree in ______  (healthcare management, or nursing, or other system-related credentials) – so do I need to study anything else? The answer that may surprise you is this: You aren’t asking the right questions. You don’t NEED any of that. There are no specific degrees or credentials you must have to be a good, effective, independent patient advocate. It’s not about degrees, or certificates, or licenses, or formal education. For today, all you need are these three things: A solid and basic understanding of how the healthcare system really works and the ways to get around it.  NO, not the way it formally educates you that it works. Instead, the follow-the-money nature of the system and everything that entails. A solid and internalized-embrace of independent advocacy ethics. A willingness to learn and execute the business basics of starting, growing, and managing a practice: from legal to insurance to marketing and other aspects, too. Like the three-legged stool, if you are missing any of those supports, you will fall over, and fail. Tough words, but true. And ignored by too many. The problem is this:  so many newbie advocates think that because they have been nurses (or physicians) for decades, they are prepared to be advocates – they are not. Or because they have been managing hospital systems, or physician practice billing departments, they know how to run a billing practice…


 

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Powerful, Useful, and Beneficial — From HBO’s Vice Media: Patient Advocates Can Save Your Money and Your Life

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Powerful, Useful, and Beneficial — From HBO’s Vice Media: Patient Advocates Can Save Your Money and Your Life

In April of this year, patient advocates convened in San Diego for the APHA Summits to mix and mingle, learn, and talk shop… Joining us was the video crew from HBO’s Vice News, led by producer Amanda Pisetzner – a delightful group of young people, with so much talent and enthusiasm, asking great questions… They worked in the background during our networking event, and separately they met with two of our advocates, AnnMarie McIlwain, and Karen Vogel, as they conducted their important work. The crew even met with client-patients who AnnMarie and Karen found were willing to discuss their own situations and results… Bottom line – the most powerful public video we’ve seen, creating a very clear picture of the benefits of independent advocacy and why everyone needs an advocate. We have arrived! (Note: if you attended the San Diego Summits – you might be in the video!) I invite you to watch it – and then I’ll share a few steps you can take, too, not just to help boost your own practice, but perhaps to find yourself the featured advocate in a future media activity. So what do you think? I hope your reaction is WOW!  How can I help?  And how can I get involved in this great promotion of our profession? There are several things you can do: Watch the entire video. Just click on the arrow  above. Give the video a thumbs up. It helps promote both the video and the content. Read the comments.  They will give you a good sense of how someone feels when they first hear about independent advocacy. The people you discuss it with will have similar reactions, and you’ll want to be prepared to answer concerns, or support their positive feelings. Comment yourself.  And – here’s the first step toward helping your own practice – include a link to your own advocacy website! As long as the link is relevant, it’s allowed. Finally – the most frequent question I have received…. how can YOU be included in these great media mentions? AnnMarie and Karen were chosen to…


 

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Help Us Assess the LoveFest!

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Help Us Assess the LoveFest!

Once upon a time, the word “advocate” was contentious: doctors didn’t want us in the room, nurses didn’t want us next to a hospital bed, and health insurers thought we patient advocates were nothing but troublemakers. But in recent years there seems to have been a major shift in attitudes. I’m hoping you can help us assess that. This point came up in several recent conversations with people who have been doing advocacy work for many years; who have been able to observe attitudes for quite awhile, and who tell me they have seen this shift with their own eyes. The shift?  From wary standoffishness – to a lovefest!  As follows: As health and patient advocacy morphed into a full-blown profession (back around 2009-2010) the existing medical system resisted, resisted, resisted. Because of the way the system works (in Canada as well as the US) – with money, not care, at its core — having to deal with an extra person, an advocate who held toes to the fire, meant having to spend additional time, having to provide additional answers, and generally, major annoyance for anyone providing care to patients. Doctors (representing front-line providers), whose time with their patients was becoming more and more limited by outside insurance and practice management forces, were simply frustrated and annoyed. Nurses, especially those who encountered advocates in hospitals sitting by clients’ bedsides, were resistant; they were sure we were there to report them for wrongdoing. Medical billers and health insurers saw every encounter with an advocate as a losing proposition; they knew they were going to “lose” on the amount of money owed once an advocate was finished working with them. But today, many advocates have reported to me that they aren’t experiencing so much resistance anymore.  In fact, they describe a sea change in how they are being recognized and respected by medical providers: Doctors now welcome them into the exam room and patient discussions because they realize that the term “advocate” means the professional is also advocating for them. For doctors, patients, and advocates:  win-win-win. Everyone’s experience improves. Nurses, even those…


 

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