The first time I met an official patient advocate, it was the spring of 1991. I was a first-year fellow, learning by treating patients with blood disorders and all kinds of cancers.
A young gay man with low platelets came to see me in consultation. It was his first visit to the clinic. As I walked by the desk on the way to greet him, the receptionist mentioned that the patient was accompanied by an advocate. “He’s from an organization,” she whispered. “Just thought you’d want to know.”
“OK,” I agreed, not sure what to expect.
My patient was a frail, tired-appearing and polite young man in his 20s. He lived in the West Village and was no longer employed, suffering from AIDS. The man who accompanied him was also thin, perhaps 30 years old – like me, then – and what you might call assertive. The advocate explained that he’d stay with the patient during the evaluation and discussion of recommendations. He added that he’d seen a file on me at ACT UP, and that I was “all right.”
We walked into one of the small consultation rooms. I took detailed notes on the patient’s medical history — too long for his age, approximately 23 years. His body was frail and bruised. A bouquet of tiny red spots lined his palate. Similar marks, a bit darker, coated his legs over and above both ankles. We called those – a manifestation of low platelets – petechiae. I reviewed the patient’s prior blood tests, and drew a sample that I might examine his cells under the microscope. Later on, the patient, advocate and I spoke about his likely diagnosis and treatment options.
This encounter – my first with an advocate - happened approximately 22 years ago. I don’t know the long-term outcome of the patient’s story, but it’s likely he died of AIDS within a year or two of that encounter. He’d already had several serious infections, and his T cells were quite low as I recall. The advocate may have died, too, but I was not privy to his medical history. All I learned about the advocate – over the course of a few visits, and never by my asking him questions – was that he was involved with ACT-UP, that he was extremely familiar with AIDS manifestations, and that he cared that my patient have access to treatment by a considerate doctor.
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So who’s a patient advocate, today?
I’ve been wondering about this, in part because I’d like to serve as a patient advocate on a committee and help decide on priorities, meeting agendas and funding for, say, breast cancer research. Some agencies consider that someone like me – a physician who’s had significant illness — can’t serve as a patient advocate at a table with limited chairs, because I have a medical degree. The problem is, I’m on “the other side,” or something along those lines.
“The Doctor and His Patient,” by Jan Steen
It happens that some physicians, including your author at Medical Lessons, are among the fiercest proponents of patients’ rights I know. I support patients’ unrestricted access to information about medicine and new research, to reasonable treatments matching their preferences and values, and to respect from health care providers. At the same time, I’ve seen doctors who, it seems, promote or outright advertise themselves as “patient advocates” on blogs, websites, in books and elsewhere. Suspicious, yes, but not necessarily untrue –
So here’s the question for the crowd: Can a good doctor, or a nurse, or a physical therapist, or any other person employed by the health care system, serve as a patient advocate?
I’m sure I served an advocate for my patients, years ago, while I was practicing, just as I might now, for people with various illnesses. Tell me I’m wrong.
Comments please! How, exactly, might we define a patient advocate? And, while we’re at it — who’s a patient navigator, and what’s the difference?
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Hello Dr. S — thanks for kicking off such an interesting question.
I’ve heard a number of physicians say things like: “Well, we are ALL patients!” to impress upon others how they genuinely “get” what their patients are going through, based on the fact that they too have undergone some medical treatment of some sort at some point during their lives.
My usual gut reaction to this, and with all due respect to hard-working and well-meaning health care providers:
“No offense, but you have no frickety-frackin’ clue!”
As a patient and a women’s heart health advocate, I simply do not believe that so many doctors would say the kinds of things reported to me that were actually said out loud to their patients if they had even the slightest awareness of what it’s really like to be in that patient’s shoes (or hospital gown!) These may be skilled, brainy, educated clinicians — but patient “advocates”? No way.
I’ve always been fascinated by the universally observed transformation of physicians who suddenly do become patients diagnosed with catastrophic illness. It’s quite a remarkable education, no matter how caring or empathetic such docs may have been before becoming a real patient themselves. Virtually every one explains that their experience forever changed the way they practice medicine.
There’s nothing quite so enlightening for docs as lying sick, frightened and helpless in a hospital bed night after night after night, desperately pressing repeatedly on a call bell that does not get answered.
Consider for example the debilitating powerlessness described in Dr. Itzhak Brook‘s story about his own experience as a physician facing throat cancer and, ultimately, a laryngectomy. He describes the reality that your average patients already know about:
“On one occasion, I asked a senior resident to clean my obstructed tracheotomy tube. He reluctantly complied, but did it without using a sterile technique and flushed the tube using tap water. The tube he wanted to place back was still dirty, and when I asked him to clean it better, he abrasively responded: ‘We call the shots here!’ and left my room. I felt humiliated, helpless and angry being treated in this fashion.”
Now THAT’s a physician who’t legitimately serve on a patient advocacy committee anywhere.
And when Dr. Val Jones sat vigil last fall at a family member’s bedside during an 8-day hospital stay, she was so appalled by the patient’s experience that she lashed out publicly against the terrible hospital design flaws she observed — from too-loud intercom announcements to sleep-destroying beeps and needless privacy intrusions. More on this at: http://myheartsisters.org/2012/11/19/dr-val-worst-hospital-design-features/
Yet even though she’d been practicing medicine for years before that 8-day experience, she seemed genuinely surprised by what all experienced patients are already well aware of as a matter of routine.
Welcome to our world, docs.
In your case, Dr. S, it does seem that you may indeed possess the best of both worlds: those letters M.D. PLUS your own bona fide patient experience. This could be particularly helpful to a patient advocacy group discussing research funding, for example.
As for your last question on patient navigators, I can’t speak for the U.S. but here in Canada, the role is seen almost exclusively in oncology (although goodness knows could be a godsend in all departments). Most patient navigators are RNs although some groups have peer-navigators (Cantonese-speakers among Toronto’s Chinese community, for example). Interesting Vancouver Sun article on patient navigators here: http://www.vancouversun.com/health/Navigating+health+care+maze+future/4373996/story.html
Thanks Carolyn,
I see there’s an issue! But seriously, some on the “patient” side might be self-centered in their behavior, or simply clueless. Would that be OK? Some agencies are adopting criteria for who’s an advocate, and/or training. Need advocates be educated?
Also, thanks for the “navigator” link — it seems like there’s a similar article, and a burgeoning navigator business, in many cities.
Hi again Dr. S — yes, you are 100% correct in believing that not EVERY patient is a suitable patient advocate (and I’ve met quite a few of these!)
Here’s an example: I sit on a ‘Patient Voices Network’ board of “experienced” patients providing input to our regional hospital system here on the west coast. We participated in a patient focus group recently on doctor-specialist communication, but the first hour was utterly wasted while the group got to hear the entire nightmare story of a fellow patient who was still angry about his own hospital experience years earlier. Self-centred and clueless indeed. These folks need therapy (and a competent focus group facilitator!) — and should not be awarded with a patient advocacy role.
And YES I think advocates need to be educated to help weed out the clueless — both those with or without the letters M.D. after their names.
After surviving my heart attack, I applied to attend the ‘WomenHeart Science & Leadership Symposium for Women With Heart Disease’ at Mayo Clinic, five days of world-class cardiology training and community activism bootcamp. I can tell you that over the past five years the Mayo Clinic credentials have opened doors within the medical profession that would never be open to a mere patient like me.
Back to the Patient Navigators: do you know about their national organization? http://aphablog.com/
Hi Elaine,
As the founder and director of both http://www.AdvoConnection.com (a directory where patients and caregivers can find an independent private patient advocate), and its supporting membership organization, the Alliance of Professional Health Advocates, (www.APHAdvocates.org ) I feel qualified to answer your question!
The Alliance of Professional Health Advocates is the premiere business support membership organization for private, independent health and patient advocates of all flavors.
You ARE a patient advocate, as is anyone, clinical or not, who goes to bat for a patient with that patient’s best interests in mind (as opposed to those who focus more on their own income or best interests.) To clarify:
A patient advocate is someone who works directly for the patient, with the primary goal being the best interests of the patient, either as a volunteer, or paid directly by the patient or someone who is invested in the patient (such as a family member, an employer, or a union.)
A hospital-employed patient advocate, and an insurance-employed patient advocate skirt that definition because of (what I call) the Allegiance Factor. Here’s more about the Allegiance Factor: http://aphablog.com/2011/03/05/patient-advocacy-and-the-allegiance-factor/
Policy patient advocates fall within that definition as long as they don’t represent other interests that conflict with the best interest of patients. A pharma-employed “patient advocate” would not fall into this definition because they represent pharma income first, and the best interests of patients second (by definition and by law.)
Patient advocates provide many services ranging from medical-navigation, to shared decision making, to family mediation, to claims reviews and negotiation. Independent advocates may have a clinical background, or they may not.
Credentialing: to date (early 2013) there is no nationally or internationally recognized certification. About 2 dozen organizations offer everything from degrees and certificate programs in patient advocacy, to workshops or continuing education. Here’s a master list of the known programs: http://www.HealthAdvocatePrograms.com
The difference between advocates and navigators? Maybe nothing, and maybe everything. The term “navigator” has been co-opted by several groups and is now becoming too confusing. Cancer navigators are working for hospitals, or they may be independent (once again, consider the Allegiance Factor). The term has also been introduced for people who will help Americans figure out what health insurance to purchase through the new Exchanges (Marketplaces) later this year.
Hope that clarifies some of the world of patient advocates and advocacy for you.
… along with a thank you for doing all the important advocacy work you do on behalf of patients.
Trisha Torrey
.….….….….….…
Every Patient’s Advocate
Founder and Director of AdvoConnection and
The Alliance of Professional Health Advocates
Hi Trisha,
Thanks for your detailed response, and for your work. The issue of credentialing interests me a lot — it’s a bit reminiscent of when state medical boards and the AMA started setting rules on “who’s a doctor” over a century ago.
At some level, I suppose we are what we do. But what we know (our credentials, experience, education?) seems relevant — or does it only matter if there are limited seats at a funding table, or $$ to be earned.
I’ve lots of questions, still!
E
Your questions are fair — and excellent. I invite you to follow my advocacy blog: http://www.APHAblog.com — comment, ask questions, etc.
We’ve tackled a number of your questions over the past several years, and continue to update them as needed. From “The Myth of Patient Advocacy” to the above mentioned Allegiance Factor.
All participants are welcome.
Hi again, Trisha,
I appreciate the link to the Alliance of Professional Health Advocates — seems like a useful resource!
Thanks!
–Elaine
Hi Dr. S,
I think you could be an excellent patient advocate, and think it is entirely unclear what the “best” combination of skills, experience, and expertise are for a patient advocate. By way of background, I have an MS in Health Policy/Management, 30 years of work experience in managing public and private managed care organizations, a Certificate in Patient Advocacy, family members in academic medicine/primary care and psychiatry, and nursing, experience as a patient, and several years caretaking for parents and friends/family members with debilitating cancer and stroke issues (including work with geriatric care managers and private home and home health services).
From my experience, the best advocates are actually those who have professional clinical training and experience dealing within the complicated referral, insurance and other issues within the continuum of care. While some people have more limited needs, most people needing an advocate actually need help with medical, as well as the whole host of other issues. I think the clinical background, experience and training is essential to knowing if the person/family is getting the right care, and helping them get it. I think experience within the system is essential to getting the system to work correctly — whether it’s a hospital stay, post hospital care, or a variety of services for a mostly home-bound person with a chronic or terminal illness. I think you can learn some of this “on the job”, so to speak, if you come to the field with relatively little background, but I am not sure you can be as effective as the people I know who are highly experienced, and have the right degree of empathy and practicality that I think private advocacy, (as opposed to more general policy advocacy), requires.
I have certainly found that the geriatric care managers who have helped me in my advocacy for family members, who are in many ways advocates, are particularly effective due to their clinical and practical training and experience, and certainly bring a substantive understanding to the issues that I do not have as a non-clinician, albeit a very experienced and knowledgeable layperson.
Hi Lise (and others), I appreciate all the positive feedback. But the underlying question is about health care providers (not me in particular) — can they be advocates?
What I’m thinking is that ultimately, they ought be their patients’ advocates or else they’re not really doing their job.
Can a good doctor, or a nurse, or a physical therapist, or any other person employed by the health care system, serve as a patient advocate? Absolutely! Depends on patient’s needs re advocacy/navigation. However, a doctor, nurse, PT, or other licensed healthcare provider employed by a healthcare facility is answerable to the goals of that facility, which may not always be in line with the patient’s healthcare goals for themselves.
And on the topic of patients’ needs, I’d like to bring up the issue of patients not being communicated with as if their needs/goals, as opposed to the needs/recommendations, etc. of everyone who’s treating the patient, are not foremost. This is where an independent advocate/navigator who does not work for a facility can come in.
A good advocate/navigator can help a patient walk this high beam they often find themselves on; that is, what do they do when their healthcare providers are instructing them to do one thing, and they want to do something else. A good navigator can sit with someone, LISTEN to them, LISTEN some more, and then KEEP LISTENING, and try to assist the person with sorting through goal discrepancies. A good navigator does not choose for a patient what their best course of action is or what their healthcare goals should be, but does guide them through a process in which they can clarify reasons for/causes of these discrepancies, which could be myriad.
Once a person has decided on a course of action for themselves, that’s when an MD navigator/advocate, or a nurse navigator, can help a patient find their way through the complex system in which they work, such as the cancer treatment system.
What I try to do with my clients is to think big first, then after they’ve clarified their big goals, begin a process with them of narrowing it down and becoming more focused. If someone doesn’t go through this first-step process, they may find themselves in a part of the healthcare system they’re not committed to. This is where frustration, anger, blame, disappointment, begin to emerge, resulting in poor outcomes and healthcare providers not knowing what to do.
Re navigation vs. advocacy — When I navigate for someone, I seek to empower them to take over in any way they can their own healthcare. Some people are unable to do this, or prefer to be in a position of having an empowered advocate doing things for them, so they are a better candidate for advocacy services. Usually, there is a play back and forth between these two roles, as I help someone through a difficult process during a time in their life when they may not have the energy to be empowered, but they want to recover and be an empowered healthcare consumer in the future.
Yours is a big question with lots of complexity and nuance. Whenever I see questions like this, I always go back to the patient. Where along the navigation/advocacy spectrum do the patient’s own goals for themselves lie? Have they even clarified, sorted through, and settled on goals yet, or are they in kind of a powerless role, where they’re just going along with what their most recent provider is recommending?
I want to also comment briefly on your experience with the ACT UP advocate. His defensive comments are completely understandable given the difficult circumstances he was helping someone through. He likely viewed the healthcare system as potentially very hostile toward his client, who was too ill to be in a hostile environment. A good navigator/advocate, among all the other things we deal with, should try to turn a potentially hostile environment into one that will meet their client on the client’s terms. Some healthcare providers make this task way too hard, culminating in a kind of a war between defensive parties. This scenario is destructive to all parties, including the healthcare providers.
Hope this helps.
Thanks Linda. Yes, it is a complicated question that offers more questions…
About my recollection, I think you’re right that ACT UP developed “advocacy” (and I don’t know that they were the first — I’m interested if anyone knows!) as a response to what they perceived, understandably in many places, as a hostile and frightened community of physicians.
I see my true Advocate friends are the ones who have opinions and advice for you. Your issue that the committee does not consider you a proper Patient Advocate or representative of the Patient Advocacy community is part of the rush to redesign the health system and the “save my own job” syndrome.
As you point out, ACT UP and other organizatons used the term Advocate in the ’90’s. I actually started using that title in 1989, as part of the Jobs with Justice Health Care Campaign. Our tag line was “GET THE FACTS, FIGHT AGAINST COST SHIFTING!” Cost Shifting was deemed to mean any effort to keep patients from receiving care through co-pays, deductibles or uncovered services AND any effort to short change providers so that they did not have the resources to properly treat the patient. This put the patient and the provider on the same side of the issues.
Another one of our groups slogans, started by David U. Himmelstein and Steffie Woolhandler is “It’s the Insurance Company Stupid.” Here’s a link to a recent article that shows we are still trying to get people to understand who the players are and how to play the game. http://pnhp.org/blog/2012/06/01/himmelstein-and-woolhandler-explain-savings-from-single-payer/
Welcome to the debate. Glad to have you on our side.
Hi Caryn,
Thanks for your ideas on this. The thing is, I didn’t intend for this post to be about my particular circumstances. I led with a story — what was my introduction to advocacy as a clinician, as a device for thinking about what advocates do, and whose interest they represent.
Thanks for mentioning the work of David Himmelstein & Steffie Woolhandler — I’m a fan, and have been for years.
ACT UP didn’t necessarily use the term “Advocate” and in fact it is the office person and physician in this article who describes the person as an “advocate”. What ACT UP did do is educate people about how to arm themselves with knowledge and advocate for themselves and those affected by HIV/AIDS in a time when little was known and most were marginalized and often mistreated. I applaud the patient, the “advocate” and the physician in this article. All three have a responsibility to educate themselves and be open to a dialogue that ultimately ends in doing what is not only best for the patient but is what the patient really wants. As far as I can tell we are no further along 20 years later. In my own personal experience I have encountered few patients or physicians who are open to this dialogue.
Hi Robert,
Thanks for writing in. The story is based on my recollection of >20 years ago; there was no “proof,” as I recall, of an ACT UP affiliation. It’s just what the advocate (or, should I say, the man who called himself an “advocate”) told me, and I accepted that. What mattered to me as a physician was that the patient wanted, or at least gave permission, for that particular man to accompany him through the visit.
I agree with you about the rarity of meaningful dialogue as medicine is typically practiced. I do think, though, that doctors are “learning” to listen more — to patients and/or advocates (however we define advocates), though they may lack time to do so.
I think anyone “can” be a patient advocate. After my mother in law who worked for a hospice agency, passed away, my wife and I decided to dedicate the rest of our lives to patient advocacy. I’ve spent my entire career in healthcare and have seen first hand the many gaps in our industry. These gaps were glaring at us during my mother in laws battle with cancer. From not educating the family on how to make a draw sheet, to failing to provide adequate medication, we watched from 500 miles away. Then my wife decided to spend the last months with her mom to provide her with the care she needed and deserved. My wife was a corpsman in the Navy. I done everything from Pre-Hospital care to clinical instruction of physicians and nurses.
If we hire a tax professional, a real estate professional, and an attorney, why would we not hire a healthcare professional? A REAL patient advocate can have any number of life experiences or educational background. The most important trait is a genuine desire to assist patients in the direction the patient wants to go while ensuring the medications, procedures, and therapies they receive are appropriate for their particular diagnosis.
To me the difference in a navigator vs. an advocate can be classified as a passive approach (navigator) and an active (advocate) approach. Both are desparately needed in our complex healthcare system. Many of my colleagues say they look forward to the day when insurance will pay for these services. I disagree. If anyone or any entity pays for a patient advocate, then by necessity, they no longer ONLY have the patient’s interests at heart. They are then forced to comply with the rules and regulations set forth by the payor, and will no longer ONLY be beholding to the patient. I for one hope that day never comes.
Dr. Schattner, I’m a patient advocate for patients who have the same cancer as I have. My added value is that I am totally independent. so not government, not clinician, no researcher, no pharma, no lab, no insurer.
Nevertheless I do have insight into each of these health care trades and keep that knowledge up to date. Staying well-informed requires maybe 70% of my available time, while people in those trades can only spend maybe 10% on that for their own field of knowledge. They never get a full and up to date picture of the ‘health care machine’.
That is what a patient needs though, to be able to cope with his disease.
What he needs as well is an objective mind, which will only stick to verifiable facts, not be influenced by his own psychological weaknesses, by religious beliefs or by political beliefs and dependencies. That is what I offer.
Although I am not religious, a patient may be religious. Although I am pretty self-assured, a patient may be less sure of himself. Although work from a trader principle, a patient may believe partially or fully in communism or socialism.
What we have in common is that I will work to get the patient the choices for the best possible outcome in his situation. He will still have to decide himself if he want any of them.
These choices are not offered by doctors, nor clinics, nor government, not insurers, because they are merely focused on their own self-interest. Some of these were hired for that, so there is no problem for the patient. He just needs to continuously assess and manage them, his team, to remaining focused on his own goal of the best possible outcome. Some of them, like government or most of today’s ‘patient representative organizations’, are imposed on the patient by force. As a patient advocate I just try to help the patient defend himself as best as he can against those. I’m his shield there.
So real patient advocates have a dual function of helping manage ‘the good’, the health care team members, and helping fend off ‘the bad’, those who are damaging to his outcome. Nowadays, unfortunately too often and growing in strength, the influence of ‘the bad’ has become part of ‘the good’. That adds to the complexity of my work. I need to help my fellow patients discern when the added value of ‘the good’ is so weakened by them being influenced by ‘the bad’ that they need to be replaced (if there are still options for that).
In this context a true patient advocate needs to be totally independent from both ‘the good’ and ‘the bad’, or he cannot be trusted to put the interest of either above the interest of the patient. That means that such patient advocate should only be funded by the patient and should not let any licensure come into play, nor any professional association which has political or provider or even ‘patient representative group’ connections (which are contaminated politically).
You’ll say that this can only be done in an ideal situation. In the old world of bricks and mortar, I would agree, but not in the online world, where one is not obliged to reside in countries where health care is tightly regulated. Today’s patients are lucky in that aspect. Someone thousands of miles away can still be quite effective in helping them nowadays. I shudder to think what the outcomes would be, or will be, without this freedom. Patients need a free patient advocate not a chained one.
Of course there will be those who argue that somebody needs to judge for the patient if the patient advocate whom he hires is qualified, so knowledgeable enough, to exercise his role. I do not subscribe to that paternalistic view. Anyone alive is best qualified to judge what is best for HIS life (unless he has a mentally handicapping illness.) No doctor, no government bureaucrat, no politician, not even a wife, can judge that better.
hello,
I have a comment to make from Peter Leeflang’s statement. Particularly the phrase, “Anyone alive best qualified to judge what is best for HIS life. (unless he has a mentally handicapping illness)”. I don’t mean to be rude, but I find it very offensive. The phrase, “mentally handicapping illness” is not by any means a qualified medical or legal term. Perhaps you meant to say mentally incompetent; the application of this concept is only appropriate in a legal setting. It is a rarity for people living with mental illness,even if it is serious to lack judgement as to decide judgement for what is best for HIS life or to become a patient advocate.
This question posed and the discussion are wonderful. The definition, including the term, is very dynamic. In my opinion, an advocate is one that has the capacity to help one in need.
Most of it has been mentioned by Trisha on the requirement and I agree. I would only emphasize that there be no conflict of interest and the person providing the guidance be ethical, compitent, and caring. Most clinical providers fill this need however, there are a few that have gaps in their caring that can be filled with a health advocate.
David
I am a physiotherapist with 36 years of clinical practice in almost all areas where you might expect to see a PT. I have thought about advocacy a lot and am conflicted about it. In the discussion above we have seen advocacy framed in interests of a group of people with the same disease or in the interest of some ideals, all transcending the patient for whom advocacy is to be done. I think that we need to consider allegiance in this discussion, as allegiance informs the interests that are to be promoted. I think of how the intersts of a patient with non-malignant chronic pain might be articulated differently by the patient, by his/her immediate family or the by health provider with a strong back ground in evidence based medicine, all in the patient’s best interest. We need to be aware of our allegiance(s) as this informs the interests that we defend on the patient’s behalf.
Frank