Personal Advocacy


In this section we explore the meaning and application of the term 'advocacy.' You will need an advocate you can trust if something goes terribly wrong and you aren't able to make decisions for yourself that others, especially hospital personnel etc., will accept. The main distinction to be made and understood here is that 1) There is a definite best and a worst way to choose an advocate, and 2) trusting someone isn't the same as liking them. With those parameters delineated, let's begin.



Choosing A Personal Advocate


Don't narrow your choices at the very beginning:


We've a natural tendency to think only of those persons in our immediate circle of friends and family, but that's insufficient grounds for choosing any one of them as a personal advocate. Think of those people you've had interaction with but perhaps not a close relationship. A pastor, your child's doctor, a teacher or professor, a local shop-keeper, a distant neighbor etc. It doesn't matter how you think about widening the search; it matters only that you do. Of any of the possible persons, ask yourself how they rate in terms of trustworthiness and competency. By 'trustworthy' I mean capable of keeping an oath or promise. By 'competent' I mean having the ability to act with quickness and calm in the face of possible emergency.


It is supremely unimportant whether you like this person or not, though that's a nice plus. For example, you may not like a doctor's personality, but you may trust them to act on your behalf and with great competency. Your best friend, mother, brother, sister etc., may fit the same category as well, but don't count on it. Be honest with yourself and choose the person least likely to buckle under pressure, not the nearest warm, fuzzy person.


Once you've decided on a potential advocate, then set a time to have a quiet meeting with them to explain the details of your illness AND your precise wishes should you become incapacitated. Include medications you do not wish to be given and why (for example, allergies, bad reactions etc.), exchange with them a current list of your medications including dosages, and include those events that serve as triggers for you as well. Having done that, see that you have one another's communication devices nailed down. Such things as phone numbers for work and home, beeper numbers, email addresses, ICQ ID numbers, and any other method by which you might contact them if need be. It's important that you write down your wishes and have them notarised to add some weight to them. Even if your advocate is your spouse, mother etc., you still need to set aside a time to cover the specifics and you still need to write them down and make sure both of you have copies. Without handing over power of attorney to someone, they really have no legal power to protect you, but most medical institutions will lend some credence to an obvious attempt by you to cover all the bases.


Lastly, stay in touch with your advocate. Periodically update everything you discussed in the initial meeting and get a renewed commitment on their part. Carefully assess where you're at with this person and make sure you can honestly say that you have confidence in their desire to do the best for you if need arises.


There's no reason that someone can't act as your advocate across the ether if all the steps are taken as laid out above. It does mean that you'll need to stay in closer contact and exchange mail, or logs from a MOO-discussion, frequently, but again, what counts here is the lifeline out of the funny farm if you get tossed in. The additional evidence your email sponsor can provide as far as your personal situation goes can only serve as added insurance that your desires will be made known.


Be sure that your email advocate has the email addresses, personal phone numbers etc. of other members of your family as well as your own personal details. They need to know where the important people are to mail electronic copies of information you have given them.


Here's a list of names and email addresses for people who have agreed to be online personal advocates for folks, but remember, any electronic buddy can act as an advocate if you set it up properly:


Name Email Address
Mark Clohesy
Kimberly Edge
Raymond K Lenton (New South Wales AU.)
Tracey Helmore  (Queensland)
Emma Schofield
John Dixon
Joan Shields (Marana or W Tucson (Arizona) only.