Patient Advocacy vs Medical Advocacy: View from the PACB

A recent article in the Washington Post has triggered vigorous debate about the proper scope of practice of the professionals who are patient advocates.  

Initially, it is apparent that almost anyone can “advocate” for someone who is a patient.  Physicians, nurses, social workers, attorneys, and even friends and relatives of the patient may feel a need to help a patient obtain the care they deserve.  But service as a professional patient advocate is a separate calling that has its own boundaries and parameters.  So let’s take a look at what a patient advocate is and is not.

The Patient Advocate Certification Board (PACB) is the national body that is developing a credential for the profession of patient advocacy.  PACB defines a patient advocate as a “professional who provides services to patients and those supporting them who are navigating the complex healthcare continuum.  Advocates work directly with clients (or with their legal representatives) to ensure they have a voice in their care and information to promote informed decision making.  Advocates may work independently or in medical or other organizational settings.  They serve individuals, communities, disease‐specific populations, and family caregivers.”  

The very first Ethical Standard adopted by PACB clearly talks about the proper role of a patient advocate:  “The role of an advocate is informational, not medical.  Advocates are committed to helping clients and client communities make informed choices and access resources.”  The role of a patient advocate is further detailed in PACB’s Competencies and Best Practices.    

Taken together, all of this information tells us what a patient advocate does:

  • Provides services to patients as they navigate the healthcare system,
  • Works directly with patients to ensure that they have a voice in their care,
  • Works to make sure that patients have sufficient information to promote informed decision making, 
  • Plays an informational role,
  • Is committed to helping patients make informed choices and access resources,
  • Ensures that a patient’s wishes are the guiding force behind decisions affecting medical care and the withholding of care, and
  • Collaborates effectively with other members of the healthcare team.

We can also look at this from another angle and clearly see what a patient advocate does not do.  

The first Ethical Standard of PACB is very clear that a patient advocate “shall not recommend specific treatment choices, provide clinical opinions, or perform medical care of any type, even if they possess clinical credentials.”  Further, PACB’s Competencies and Best Practices clearly state that a patient advocate must “avoid diagnosing or prescribing any medical/mental health treatment for clients, even if the advocate has additional licensure or training.”  

Thus, even if clinical capacity is present, a patient advocate must not provide a diagnosis, provide clinical opinions, recommend or prescribe any specific tests or treatment, or perform hands-on care.  Basically, if the service is clinical in whole or in part, the patient advocate must not provide it.  If such a clinical service does occur, the person providing it is no longer acting as a patient advocate.  Some would refer to this as being a “medical advocate.”  

While there is no need for this body to chisel out a precise definition of “medical advocacy,” it is important to recognize three important issues. 

  • First, “medical advocacy” includes clinical components, which means that it is definitely not patient advocacy. 
  • Second, the clinical aspects of “medical advocacy” can have very serious legal and insurance ramifications. 
  • And third, there is a significant conflict of interest when one person tries to wear both clinical and advocate hats.  Unbiased advocacy may diverge from the clinical care and advice that is provided to a patient.  To be truly patient-centered, a patient advocate must be vigilant to identify, disclose and avoid conflicts of interest, not create them.

Those professionals who aspire to practice as a Board Certified Patient Advocate under a credential earned from PACB will certainly be cautious about straying away from true patient advocacy and crossing the clinical line.

As the profession of patient advocacy grows and matures, we are confident that the strong distinctions between patient advocacy and other fields will become more commonly understood.    

29 comments

  • Robin Gerhardt

    When will the study materials be available to sit for test? How will we obtain these materials?

    • PACBoard

      For the moment, the study materials available are the competencies, best practices, and ethics documents that were published by this body last year. If you spend some time going thru them, it will be obvious what you need to know for the exam, because exam questions are all based on those competencies and ethics.

      Some basic study guide / test guide materials will be created and made available by the PACB to aid preparation – most likely right here on this website. But for now we have no idea when that will be.

  • I disagree on one point, especially if the patient advocate is a licensed or experienced healthcare professional. I think patient advocates should, through discussion with the involved physicians and through doing research, recommend the best standards of care and Evidence Based Medicine for that patient. Advocates owe it to their patients to do this in today’s healthcare environment.

    • Administrator

      Steve,

      Thank you for your comment.

      In the scenario you provide you are introducing a different role – a healthcare professional, clinical in nature, presumably a nurse, nurse practitioner, physician, physician assistant.

      The role of a professional patient advocate is not a clinical role; in fact, providing clinical information such as making recommendations would violate not just the PACB Ethical Standards and Best Practices (found on this website) but would also violate the requirements of any advocacy liability / E&O insurance held as an advocate as well.

      The Patient Advocate’s role is to provide resources and information to the patient/caregiver so they can make informed decisions – themselves. Many times, the Patient Advocate will bring the team together so the patient/caregiver may ask questions of their providers to better understand options/resources to meet their needs. Also, when the information is complex and complicated the advocate can help formulate questions. Once the information is gathered and a decision is made the Advocate supports the patient in their decisions.

      We are not suggesting you cannot act as a clinician for your client. If you have the training, certification, license, and insurance to do so, then that may be what you want to do for your client. But you’ll be doing so as a licensed healthcare professional, and not as a professional patient advocate as the PACB has defined the role. It’s up to you to make your role clear to your clients so they don’t expect you’ll be doing one thing, but experiencing something else.

  • Rebecca McDermott

    I have worked as an advocate since 2012, I do have a medical background but I believe my job as a Patient Advocate is to provide my clients with information, listen and answer questions and them assist them in voicing their perspective.
    When the client is unable to use their voice then it becomes a legal guardianship situation.

  • Excellent Dorothy. From the beginning I have put forth the position of the patient advocate being “independent” from the caregiver system. Doctors, nurses, others who get their paycheck from the system have a fiduciary responsibility to their employer. The patient is not the client and the interest of the patient is secondary to that of the employer. In my career I’ve seen so many mistakes made and “buried” by caregivers. A patient advocate should be able to help the patient first and foremost. Patient advocates are not “whistleblowers”, we are advocates for the patient. For an employee of a hospital to say they advocate for the patient is deceptive. They are public relations, damage control agents for the hospital.

    I have been strongly criticized for years by “employed” advocates. I hold my position. If you are advocating for the patient you can’t be beholding to the system. Would you hire a defense lawyer who is paid by the prosecutor?

    • Michelle

      You are so right. To truly advocate for a patient, you can’t be compensated by any party that could compromise the independence of the advocacy. I’ve been approached by homecare companies who wanted to partner and I refused because that would make it difficult if an employee of the company did something to the patient that needed to be addressed. As an advocate, I’ve had to discontinue services with companies that referred clients to me, because the client was dissatisfied with care. True advocacy is independent. I’ve consulted with organizations on how to make their caregivers better advocates and am very happy to do so because I believe that everyone interacting with a patient should be advocating on their behalf.

    • Rebecca McDermott

      I agree totally and many systems tell their clients that they do not need their own private advocates because that process is taken care of for them by the system.

      I have been on the other side as a family member and believe me they only care that your voice is not heard by the administration.

  • Great blog and rigorous debate! Can I weigh in on a couple of points?

    1. There is a fundamental difference between the advocacy functions embedded within many health professional roles, advocates employed by a hospital and those of a Professional Independent Patient Advocate (PIPA). There are different goals, processes, responsibilities, constraints, focci, accountability and spheres of practice to name a few. Advocacy describes a characteristic of practice. The nomenclature describes the context. We may be better served by defining ourselves as the independent professionals we are.
    2. I feel strongly that it is important to give no medical or nursing advice or care. However, it is my nursing expertise that helps make me effective. Dana used her knowledge & expertise as I do. I never adjust IVs, silence alarms, replace O2 masks or criticise care. I collaborate with the attending health professionals to review/redirect care. I call their attention to a matter that needs addressing but I do not address it myself.
    One area where I do admit to a conflict is when a client requests that I collaborate in decisions about healthcare that I know are unsound. Then my medical/nursing knowledge tells me to draw a line. Then I say “that is not path I would support. I will have to decline to go further. Perhaps I can direct you to other advocates who might help you there”. I acknowledge that in that instance I might be accused if wearing two hats.
    I know what clients need to know and I use that knowledge to assist clients make good decisions. If I am asked “what should I do”? or even “which doctor should I see?” My response is ” let me explain what I know and what we have been told so far. Let me guide you to added information. Then lets you and I weigh up the pros and cons. Ultimately you must decide but only when you feel able. If we need to we can seek further input from your doctor when we next see/speak with him/her”.
    In the PA couse I took, less than half the students had health backgrounds. There were teachers, mining engineers, businessmen and accountants. Every single non health professional I spoke to felt they were at a disadvantage and not one has set up in practice as a PIPA.
    3. There is frequent use if the term “patient navigator”. I wonder if it is useful. I imagine it describes someone who charts a course for a patient through a health system or event. I do this often but I usually also negotiate, mediate, monitor and intercede along the way. Do some advocates really just direct? Might there not be some sense in using one title and then a specialty like doctors or dentists do? Ie Dorothy Kamaker. PIPA (Critical and Acute Care). Dr John Doe MD Physician (GIT).
    4. I am Australian. Independent Patient Advocacy is in its very early days here and it is great to be part of your evolution.

    • Michelle

      Well said, I agree 100% as a healthcare professional, advocate and former investigator for the health licensing boards.

    • Mary W.

      As a long time practicing RN, I agree with your statement. We must remember that the key term here is “patient-centered”. While I may clinically agree or disagree with a treatment or patient option, I have no moral or legal ground to do anything EXCEPT advocate for and/or represent the patient’s wishes. The patient’s wishes may conflict with everything that I know clinically to be “wrong” or “ill-informed”(even after I have provided the patient with standards based peer reviewed clinically researched outcomes) but if I have truly performed my duty as an “advocate”, I have represented the patient’s preferences and/or wishes to the extent allowed by that particular patient. I am a conduit and facilitator for that individual. Providing information, education and tools for empowering anyone who is entering any “medical” system is an important role as an advocate. Yes, I have many years of clinical expertise, but I am patient focused as an advocate. As a former hospice and palliative care nurse and health care regulator, I have been involved in all kinds of complex healthcare situations that clearly demanded that one allow the patient to be the focus. Unfortunately, in today’s medical industrial complex, “patient’s” are “consumers” and profit trumps good patient centered medical care. Hence, the increasing need for patient advocates.

  • Lucy B.

    As a former medical researcher, breast cancer advocate, facilitator for a breast cancer support group, and parent of a chronically ill child, I completely agree with Dr. Blanco’s perspective, and I am heartened by Administrator ‘s reply that applauded Dr. Blanco’s observations, his working “with and through the medical team”, including persuading, challenging, insisting in order to get the best medical care.

    To me the distinction between those informative / advocacy communications with doctors vs. hands-on medical acts is the crux between what is advocacy vs. practice of medicine.

    Still, Dr. Blanco did push for specific interventions/tests (Lasix, new tubing, doppler), provided clinical opinions (possible DVT, heart failure, tubing infection risk). Since those were applauded, that suggests a need to narrow the over-general wording of the the First Ethical Statement, that the patient advocate “shall not recommend specific treatment choices, provide clinical opinions, or perform medical care of any type.

    I care about this, for I have spent hours helping patients prepare for doctor visits: reviewing doctor notes, diagnostic reports, exploring the patients’ values, fears, laying out decisions to be made and tradeoffs, even searching for state-of-the-art treatments via medical journals etc.

    Since specifics help sharpen an argument, do you see any of the following informational / advocacy actions as unethical? I claim all of these are ethical.

    * If I summarize their situation, collaboratively create a table of treatment options benefits & tradeoffs for the patient to take to her MD, (that one’s obvious)

    * If based on test results & literature review we conclude that treatments X and Y fit best given her specific diagnosis, age, comorbidity, concerns, etc? And that tests A and B, would clarify which to choose.

    * If I go with that patient to a medical appointment, with that table of tradeoffs, serving as back-up, asking pointed questions, debating, insisting why a test (or is relevant, perhaps challenging them w/ published consensusTx guidelines?

    * If after an unsatisfactory appointment I recommend she seek a 2nd opinion, perhaps recommending 2 MDs I know are experienced with this subtype of the illness, or simply are more open-minded to shared decision-making?

    I am not an MD: by definition I cannot order a chemotherapy treatment, genetic test, nor would I tell them to stop a medication on their own, So I certainly am “working with and through the medical team.” as I listen, empathize, clarify, educate, recommend tests and treatment trade-offs, sometimes vigorously advocating on the patient’s behalf. In addition to being valued by patients, these are almost always well-received by MDs.

    This is my value added. Similar to what made Dr. Blanco able to optimize his mother’s care, perhaps save her life, “working with and through her doctors’.

    I would hope that any wording of the ethical principles make it obvious that these services that my patients and their MDs value, and the things that Dr. Blanco did, are within the scope of ethical professional patient advocacy.

    • Administrator

      Thank you for your efforts to question and clarify. That is the kind of process that will benefit us all as we develop the language for our practice and the understanding of how to apply that language in the real world of advocacy practice.

      As to your questions, I would simply say the following:

      1) Offering a list of options to your client in preparation for an appointment is exactly what an advocate should be doing. If, however, you went beyond that to recommend one approach over another (rather than supplying and clarifying the research so your client can debate and decide), that would be overstepping advocacy into medicine.

      2) Many of the rest of your queries are really about communication style. In that case, your job as the advocate is to find the most effective way to ensure that the medical team listens to and values your clients needs and desires, and answers all of your client’s questions in clear and understandable ways. That approach will change from doctor to doctor, and that is why it sometimes requires an experienced professional to achieve successful outcomes.

    • Well described Lucy B. Thanks for an inspiring description of the advocacy process.

  • As a patient navigator, I look forward to participating in developing the credentials for this specialized emerging profession!

    A question about terminology: Isn’t “medical advocacy” a general term describing a part of clinical practice of all healthcare providers by way of their values and ethics? E.G. If a doctor or nurse, as part of the care they give, treats the whole patient, has a good bedside manner, guides the patient, collaborates with the healthcare team and promotes the best interest of the patient’s health, then does not she, too, act as a patient advocate?

    Because medical care systems are so sadly fragmenting and degrading, and doctors are spending so much less time with patients, PAs are more necessary than ever to fit the healthcare system to the unique client.

    What distinguishes a patient navigator or advocate in our new profession is our sensitive and comprehensive focus on our client’s entire experience as she engages with medical services and systems. We act ethically by providing guidance by delivering the right information at the right time to our client and her providers.

    I believe that our role is most beneficial to the client and family when we work together to facilitate information flow, arrangements, interactions, communication and manage expectations collaboratively within healthcare teams and systems already practicing according to their own ethics and boundaries, E.G. Providers, hospital staff, senior living facilities, etc.

    Whether it be helping to reduce costs or risks, PAs can actually serve one client throughout her healthcare journey, spending necessary time with the client and focusing more on that one client than other medical service providers.

    So rather than “medical advocates cannot be patient advocates,” which can seem exclusionary and provocative, wouldn’t “private patient advocates or navigators participate with other caretakers, providers, and systems to improve the experience for the healthcare customer client.

    • Administrator

      Jessica, There is no intention to be exclusionary or provocative with our statement. We never say “medical advocates cannot be patient advocates” In fact, we specifically state that it’s not up to us to define medical advocacy. We are concerned only with patient advocates. Our statement is intended only to clarify the fact that certified patient advocates cannot perform medical tasks – and that if and when medical tasks are performed, that person is no longer acting within the boundaries of what we define as a patient advocate.

      What you have mostly described above is well within the boundaries of our definition of patient advocacy, with the exception of your description of clinicians’ work as patient advocates. While we would agree with you that those clinicians are advocating on behalf of their patients, and thankfully so, we would disagree that they are working within the boundaries of our definition of the scope of work of what will become the domain of the certified patient advocate.

      And yes – we wholeheartedly agree that working together, both clinical and non-clinical, collaborating as a team on behalf of our “shared patient” is important for all parties involved. That’s the ideal scenario, one the patient advocate has the opportunity to affect on behalf of the patient.

      Again – no intent to be exclusionary, much less provocative. This is more about managing the expectations of the general public and those advocates who may not be familiar with these boundaries, to be sure there is no misunderstanding, especially this early in the genesis of our profession.

      • Michelle

        Any licensed health professional knows the limits of their license and should not be providing medical advice outside of their scope. I believe there is a place for both advocates with a medical background and without but both are patient advocates. Medical professionals who work independently as advocates can certainly provide non-biased advocacy and their experience navigating the healthcare system gives them a broader depth of knowledge. How can you train a non medical professional how healthcare team interaction works, what questions patients can and should ask without spending significant time in the hospital. Given a choice, I’ll pick an advocate with a medical background and hands on experience over a non-medically trained advocate. Until state licensing boards get involved, trying to own the term “patient advocate” seems futile.

        • Administrator

          Thank you Michelle for your comment. People will use advocates for many different reasons. They will choose an advocate depending on the help they need, the expertise of the advocate and the advocate’s ability to explain their role, function and value. Certainly, if you have a medical challenge then you’re right, you will want to pick an advocate who understands what is needed in a medical setting. But if you are having trouble reconciling your hospital bills, then that same medical advocate may not be the best choice for you. Similarly, if you are arguing with your younger brother over whether your mom needs a nursing home, then it will more likely be someone who has skills as a mediator who could help you out – and not that med-nav advocate.

          The certification will unite the practice and provide a common platform that all advocates build on. It is an exciting time and there is room for all to be involved.

      • Charles Gurd, JD, MPA

        I may be dense, but if you do not want to define medical advocacy, but state patient advocacy is not medical advocacy, how does that help advocates help patients and their families.

        • PACBoard

          Defining patient advocacy as we, the Board see it, is important because it helps us define the parameters and boundaries for the certification. Eventually when the certification is available, just like any type of board certification, it will help patient-clients and potential patient-clients have a better understanding of what to expect (and as importantly, what not to expect) from any certified advocate they work with. When you work with a client, you do not want that client to have unrealistic expectations about what you can or cannot do, so should you earn certification, it will help shape their expectations.

  • I serve as a patient advocate: a Care Manager, Power of Attorney, or Guardian for my clients. As such, I am the “team lead” for all resources, medical and otherwise, that are involved with my patient/client. I also serve in a fiduciary capacity for my clients and have not found the need to develop “a working collaborative document.” I respect the medical and legal professionals for their advice and care. They respect me and are thrilled to have one person for the client who is the “advocate” or coordinator of services, the one who knows what all the others are doing.

  • I understand the Pacboard position however let me present you a scenario. I am a retired correctional physician, presently unlicensed. My 82 year old mother was just released from a month long stay in the hospital. Yes I had to advocate: when the swelling in her legs was being ignored and finally at my insistance a Doppler was done and she was found to have bilateral DVTs; when the swelling continued to increase an I requested Lasix only to have the hospialist tell me it would do no good but he added it yo satisfy me, only to have the cardiologist come in and take her from 20 mg p.o. to 80 iv; to point out an iv that was supposed to have been changed the day before and still took another day to get changed. Yes, I will intervene and I would do the same with a client. I could not stand idlely by and say nothing while such things happen to a patient. I respect your opinion but I am in conflict. WHEN YOU KNOW BETTER YOU DO BETTER.

    • Administrator

      Dana – thanks for your concern.

      In fact, everything you did for your mother is exactly what we hope patient advocates will do. Your mother was very fortunate to have you by her side.

      • You recognized that your client (in this case, your mother) was not doing as well as expected.
      • You worked with and through her medical team to address the issues.
      • You were persuasive, even insistent, challenging them to rethink their assumptions and bring those new ideas into action on behalf of your client.

      If you had intervened medically, rather than using persuasion and information, you would no longer be her advocate. You would be her new doctor. And if the actions (and the assumptions underlying them) that you undertook as her doctor were faulty, she no longer has an unbiased advocate to question your approach. Your knowledge and experience was a wonderful asset to your mother, but you didn’t cross the line and take over for her existing medical team.

      That is the line. Patient advocates know when to enforce corrections, but they do not perform those corrections themselves.

      It appears that there is no conflict between with the scenario you have presented and the ethical standards that apply to a Board Certified Patient Advocate.

      • Michelle

        In this scenario, a patient advocate without a medical background wouldn’t have known to even ask a Doppler be done. That is precisely the point. As a healthcare professional you know different questions to ask than someone who doesn’t have the same experience. You aren’t ordering or prescribing care, you are asking questions and adding urgency when it is necessary. I experienced many scenarios like this one as an advocate, asking if a particular diagnostic had been performed, knowing key information to convey to the healthcare team so they can make the best decisions, comes with years of experience and comfort in the medical environment. is very different than an advocate without this background. There is a place for both but the difference is significant.

        • Excellent point about content competency. A non medical advocate might ask: What other diagnostics might be useful? Then probe for more detail from the doctor/nurse etc. Still insight and already knowing is a valuable advocacy skill. You don’t have to be a chicken to judge an egg…..but its helpful. 🙂 Thanks

      • Jon Lopez

        What about a patient advocate that explains health plans and how doctors work? My clients come to me because:

        1) They don’t understand their health plan and want to better understand it
        2) They received a bill and don’t understand it\want it challenged
        3). They don’t know how to file an appeal
        4). They don’t know how to set up an appointment or who to call.

        In each case, I inform and assist. I call the health plan, obtain benefits and then explain to the patient.
        I call and gather more information about that bill
        I sit down and help them write the appeal
        I find a doctor and make the appt(and sometimes accompany the patient to the appt)

        While i am doing most of the work, I feel like I am still a patient advocate because of what I offer.

        • Administrator

          As long as you are performing those tasks independently (and not working for a specific insurance company exclusively) then yes – you are working within the outline of this certification board. You’ve asked the question as part of our piece on “medical” vs patient advocacy; as outlined, you are not performing any medical services, per se. You will want to be careful about recommending any specific providers. If you subscribe to the code of ethics, then such a recommendation would be outside those ethics. You can link to the ethics, competencies and best practices through “Documents & Decisions” above.

    • Donna

      This is indeed where trouble can start. I am not a licensed or unlicensed medical practitioner of any sort. I do, however, have long experience in working with developing academic textbooks and other training materials intended for medical professionals, from surgery to nursing to medical assisting. I do not claim to be a doctor or a nurse, but when my mother was recently hospitalized, I did bring this knowledge with me, as well as some common sense.

      When the situation developed to include a dispute in diagnosis and a dispute in the meaning of some test results (i.e., the attending and the neurosurgeon did not agree), I most certainly did step in and aggressively recommend against having an invasive procedure done. I did challenge the doctor(s) by insisting they present the evidence that would support having such a procedure done, and I sure as heck did pressure my mother to refuse or delay the procedure until more evidence could be obtained. As it turned out, by waiting just one more day, it was discovered that the disputed test results were due to an entirely unrelated matter rendering the invasive procedure completely unnecessary.

      Did I make the decision FOR her? No. I emphasized again and again that the decision was entirely hers to make, but there was NO question about where I stood on the matter. Does this then travel into the realm of medical advocacy? I don’t think it does, but I know the neurosurgeon certainly thought I was interfering with his ability to follow what he thought was appropriate care.

  • Nice distinction about “giving advice”. Do you think this should apply to all “licensed” professionals? e.g. If you are advocating for the patient, even though you may be a licensed CPA, Minister, Social Worker Psychologist, or any other professional, does the “conflict of interest” principle apply?? Here’s my position to start an exchange of ideas.

    Yes it should apply.

    All professionals, including religious professionals, must stay away from even the appearance of conflict. e.g. If you are a Psychologist and your patient is admitted to a hospital for heart surgery the patient advocacy should be left to the patient advocate. This would not prohibit you from continued treatment of your patient with respect to ongoing psychological issues/stress etc. A working collaborative document might be developed between a professional and the patient advocate to clearly identify who is doing what????? I’m interested in thoughts, pro and con.

    This is a complex issue. “everything should be made as simple as possible….but not simpler” Albert Einstein

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