Every ailment stems from improper aliment.
– Frederick Kaufman, “Love Yourself Thin”, Harper’s Magazine, January 2000

With all the chatter on the social media airwaves (Twitter, the blogosphere) surrounding e-patient activity and patient advocacy, I’d like to focus for a moment on what it actually means to be a ‘patient advocate.’

It’s important to note first that I’m examining the issue wearing both personal and professional goggles.

As a person with an ongoing ortho condition, I’ve acted as a self-advocate through repeated surgical procedures, rounds of physical therapy, and hospital stays over a 10 year stretch. Professionally, I’ve worked as a paid patient advocate in a small, acute-care community hospital setting. I now work in the online, Health 2.0 space as OrganizedWisdom’s first Chief Patient Advocate, and support additional international efforts to include ‘patient voices.’

First, let’s agree that all patient advocacy is NOT created equal.

There’s a marked difference between acting as a patient advocate for yourself and acting as a patient advocate for someone else.

The major difference? When you’re acting as a self-advocate in the healthcare system, it’s all about maximizing your own outcomes, protecting your own interests, and interacting with your care team to make sure that happens.

In either case, ‘owning’ the patient advocate identity involves acting as an aliment – a nourishing matrix providing supplemental support for the patient, who acts as the protagonist in her own health/life narrative.

When you’re someone else’s advocate, however, you have no control over her outcomes. I say that again, you have no control over the outcomes. Nor should you.

After all, this is not your life we’re talking about – it’s the person lying in the hospital bed.

Repeat after me: “When deciding whether or not to act as someone’s patient advocate, I must realize and acknowledge that I am a PARTICIPANT (supporting role) in this person’s health narrative. I am a part of their story at this time, NOT the author, NOR the main character. This is not about me.”

Patient advocacy (for someone else) is a SELFLESS, not a selfish act.

It takes determination, commitment, and, somewhat counter intuitively, deep self-examination to know if you have what it takes to do the job well.

This may seem like common sense, but serving as a paid patient advocate in the St. Mary’s hospital ER, I saw friend and family advocates repeatedly trying to ‘own’ decisions for the patient and regain control of the situation.

While this is a natural, expected response – especially if the patient is a loved one – a certain lack of control over the situation must be acknowledged.

Repeat after me: “As a patient advocate, I have no control over the choices the person (who is also a patient) will make. My role is to help provide all the resources I can to enhance her decision-making.”

Even if you would make different decisions for yourself, given a similar scenario, it is VITAL that you put your preferences aside.

As an advocate, your primary role is to help the person who is a patient gather the information she needs to make choices relevant to her goals, NOT yours.

Trust me, although we’d all like to believe we’ll be selfless and able to put ourselves to the side when acting on someone else’s behalf, this issue will come up.

If you’re at all unsure of your ability to step outside yourself, decline someone’s invitation to act as a patient advocate. This isn’t about you, it’s about THEM.

If there is any doubt in your mind about whether or not you will be able to separate self and support, do what’s best for yourself and the patient – decline the invitation to serve as her patient advocate.

This doesn’t mean, of course, that you can’t be an important part of her active, vital support system. Offer to take notes during rounds and doctor’s appointments. Sign up on CareFlash.com to bring a meal, or help with other daily life activities. Consider yourself a personal/patient assistant rather than an advocate.

The absolute worst thing for a patient advocate to do is to try and impose your own value system on the patient. You MUST attempt to remain relatively neutral as the patient makes decisions for herself.

I say “attempt” here because let’s face it, it’s a nice ideal, but no one will actually achieve net neutrality when acting as a patient advocate for a sister, mother, lover, friend.

The biggest danger I see for well-meaning would-be patient advocates is to remain blithely unaware of personal prejudices going in. Today’s medical system is a labyrinthine monolith of occluded regulations, tricky terminology, indecipherable billing, and brutally tough choices.

You cannot afford – for yourself or the patient – to underestimate the strength and scope of your emotional response when diving in headfirst as an advocate.

‘Sitting’ with the sick, the dying, wears on even the strongest personalities, especially when they’re friends or loved ones. In fact, I found acting as a patient advocate to a partner or family member vastly more difficult and draining than acting as a ‘professional,’ paid advocate in the hospital setting.

Why? With loved ones who are injured, ill, we inevitably bring our personal baggage along to the bedside.

Working in the Emergency Room environs I found it easier to be empathic with perfect strangers. After all, I’d never see them again. I didn’t know if they drank too much, insulted their children at home, failed in their work lives, or forgot my birthday.

And none of these things mattered.

What mattered was embracing and optimizing my role as aliment.

Learning to be present, physically and professionally, cycling through the hospital environs (ED and inpatient) shift after shift, I learned 3 things a would-be patient advocate MUST do: 1. Shut up. 2. Listen. 3. Ask what the person-who-is-a-patient wants.

Please don’t mistake my meaning or clipped instructive tone here for distance or a lack of emotive involvement.

In order to be an effective patient advocate, you cannot divorce yourself from empathy.

The person you are trying to help is just that, a person. For now, she is also a patient, but patienthood is not the sum and total of her identity. It is a part of who she is, but it does not define her. Your job is to help her remember this when all the chips are down. And to help her care providers remember this as well.

This means, to some extent, ‘feeling’ through experiences with her. Empathy is absolutely required to do this job well. However, you must also be willing to contain your emotive responses when they get in the way of the patient achieving her goals.

Being a patient advocate does not automatically mean you act as default cheerleader, however, sitting by the bedside with a smile and assuring everyone ‘your’ patient will be ‘just fine.’ Unless, of course, that is what the patient requests of you. Then you must decide if this is a role you’re willing to accept.

I’ve approached the issue of patient advocacy in an unusual manner, bluntly, head on, to emphasize that being a patient advocate is an emotionally challenging role that absolutely requires real commitment to be effective.

If you’re still in any doubt about whether or not you might make a good patient advocate for someone else, here are a few gut-check guidelines.

You might NOT be a good candidate to act as someone’s patient advocate if:

1. Hospitals scare or disgust you.

2. You find medical smells, sights, or sounds disturbing.

3. You have absolutist views on medical treatment and response (i.e. narcotic use, blood transfusions, donor decisions, end-of-life or palliative care, etc.) that may interfere or influence the information you share with a patient ‘while on the job.’ NOTE: It’s perfectly fine if you have absolutist views for your OWN care decisions, but again, we’re not talking about you here. A good example: I am pro-life for myself, but pro-choice for everyone else. Think beliefs about abortion are a charged issue? With patient advocacy we’re talking life and limb. The realm of injury, illness, recovery, and death are not subtle issues with which to deal. Can you put your own deeply ingrained beliefs about such things aside?

4. The person who wants you to act as a patient advocate is dying. You are an emotional wreck.

5. You find doctors and other care providers intimidating, insulting, or have other views that may block your efficacy in acting as a relay runner of information between provider and patient.

6. You are fundamentally unable to keep your opinions to yourself. (You know who you are).

Please, dear readers, don’t feel insulted by my inclusion of number 6. I wouldn’t mention these guidelines unless I’d taken a good hard look at my own motivations – and flaws – during my advocacy experiences.

For example, I’ve learned that I am a very effective self advocate, and a relatively effective advocate for people to whom I’m not related.

When family is sick, however, I am the panicked one reading stats and rattling off worst-case scenarios. An informed epatient family member may just be any other patient’s worst nightmare!

I can and do set this tendency to near-panic aside when action is required (a friend having a fever of 104 in the middle of the night for example), but it doesn’t exactly make me the calm voice of reason in an emergent situation. As such, I’ve learned to hand the ‘onsite’ advocacy job to someone more capable of putting their own emotions on the shelf, and not scaring the crap out of everyone by reciting factoids about every possible complication under the sun.

Hopefully at this point you’re thinking to yourself, slightly offended: “I can certainly be selfless when it’s required!” If you’re feeling defensive, then congratulations – you’re actually on the right track to examining whether or not you have the capacity to serve as someone else’s patient advocate.

The first step, looking deep at your own motivations and beliefs, and examining if you are capable of (and willing to) set them aside, is always the most difficult one. So congratulations – you’ve made it this far!

Now let’s take a look at the inverse – some guidelines to examine if you’re ready to serve as a patient advocate for someone else.

In most health interaction cases, I recommend going extreme with the details. The ‘medicalization’ of illness is fraught with opportunities for communication to break down.

If someone asks you to serve as patient advocate (or ‘helper,’ ‘support system,’ or even ‘emergency contact’), set aside some time. Sit down with her (or arrange for a Twitterview) to write down her expectations of: 1. her desires and concerns and 2. your role (in detail). What does she want for herself? What does she want you to do for her? With her? To her?

If the person is unable to articulate what she wants, try asking for the top 5 things she wants during/after care, and the top 5 worries she has. Don’t despair if the worries vastly outnumber the desires at this point. In order to define your role, look at how you might respond to help reduce those concerns.

Once you have these lists, try sketching out a brief Patient Advocate Agreement, or ‘contract.’ (This isn’t legally binding, so you may want to think of composing it as you would a job description).

Below is a list of factors to examine as you define your patient advocate role, and resultant goals.

You may be a good candidate to act as someone’s patient advocate if you can agree to the following sample Patient Advocate Agreement:

1. I agree to read materials of relevance for and with my ‘patient’ – inside and outside the hospital.

2. I agree to record information given verbally or in writing for my ‘patient’ if they so desire (i.e. taking notes when the doctor makes rounds during a hospital stay, etc). However, I realize this information is NOT my own and will protect my patient’s right to privacy at all times by not sharing any information about her care without her consent.

3. I agree to relate/reiterate what caregivers have stated with, about, for, or to my patient with my patient and anyone else she may designate (barring legal restrictions involving insurers, etc).

4. I agree to respect my patient’s wishes if she does NOT wish to hear what caregivers have stated, and wishes to be a passive, uninvolved recipient of care in which the care provider team (doctors, nurses, etc) make decisions and prescribe treatment. In other words, I agree not to ‘force’ information or knowledge on the patient if she does not wish to receive it.

5. I agree to provide all information and take actions that allow my patient to have information necessary for decision-making, and to reevaluate her choices. I acknowledge that there are no “good” or “better” decisions for my patient – only choices that she selects with personal goals in mind.

6. I agree that my primary purposes as a patient advocate are to 1. Do no harm and 2. help my patient realize her goals.

And finally, the golden rule of patient advocacy. If you’ve made it this far, repeat after me until it’s ingrained:

“I agree not to judge my patient’s decisions as if they were my own.”

Of course they’re not – but stating this out loud, repeatedly, can make the difference between trying to influence a patient’s decisions and acting as a true aliment.

Take it from someone who’s been there – bathroom breaks where you literally repeat the sentence above in the mirror to yourself before heading back to the bedside aren’t a bad way to go.

If you’re having a challenging time with all of these hard-edged requirements, and muttering to yourself “I just want to HELP,” think of it this way…we will all be patients at one time.

“When I am a patient, I will have my own choices to make. And I will expect and appreciate having a patient advocate who respects them, and me.”

What requests would you put on a Patient Advocate Agreement? What kind of advocacy will you want and expect when it’s your turn?

Related posts:

1. Learning to be Your Own Best Advocate
2. On the Meaning of Patient Advocacy
3. Calling Patient Advocates–Share Your Story
4. Calling all Patient Advocates
5. Nurses, Lawsuits and Patient Safety

This entry was posted on Monday, May 11th, 2009 at 6:58 am and is filed under Uncategorized. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.