'how to' guide for patient advocacy

i was recently asked to provide tips for a friend on successful patient advocacy given my long track record with Mom and Grandma. i am including those tips below. the one most important thing i would say is that anyone who wishes to successfully survive a serious illness needs at least one patient advocate. although it is helpful if this person has a medical background, that does not mean that a medical person doesn't need an advocate. nor does it mean that a family with no 'medical' people is doomed.


important things:
1. find out EVERY doctor that is working on the case and which doctor is responsible for each problem. in doing this with both my mother and grandmother, i discovered several problems that were not being addressed by anyone as doctors worried about stepping on each other's toes. also, pre-emptively identify when doctors are going to be going off clinics and who their replacements will be so that things that can be are wrapped up before shift changes.
2. once you find out the complete listing of problems, rank the biggest 2-3 and ake sure to speak directly with the doctors managing those problems. make sure that you have a clear understanding of the associated plans for problems that will span multiple doctors. that way you can catch when things veer off course or are forgotten.
3. write EVERYTHING down. ask doctors to spell their names and words (even if you think you know) so that they know you are doing this, esp if the advocate is working over the phone. repeat back information that seems incomplete, conflicting or that you suspect is fragmented. that way, you point out the inconsistencies without actually pointing them out and making the doctor defensive.
4. find out a convenient time to talk to each doctor and set it as an expectation that you will do so. this needs to be done explicitly or you will be forgotten. realistically, without a set update time, it is almost impossible for even those people who are 'on the scene' to get info as the doc comes in when he is free and basically looks at the chart, says things are fine and leaves. a lot of times they will NOT share information on new problems because people tend to assume someone else already has and the nurse usually isn't at liberty to be specific or particularly informative.
5. make sure to find out every single medication and dosage administered as well as every test. it is easy for something to get carried over at a loading dosage throughout a stay or for an empiric/ pre-emptive treatment to be continued once a cause is already ruled out, esp if the doctors change on a case. having to list all the drugs and dosages to someone often causes doctors to catch such errors before you could.

now, all of the above requires more time from the doctors and more attention to [insert patient name]'s case. to offset this:
1. reiterate appreciation for their attention each time they do something extra ('I just want to thank you again for taking the time to round with me. I know how very busy you are and will be as brief as possible.').
2. express unequivocal understanding when non-lifethreatening procedures and treatments are delayed ('We understand. We certainly want for the patients with more pressing needs to be attended to first--we know that same attention will be focused on [insert name] first when he needs it.').
3. send chocolates to the floor caring for your [insert patient] or some similar treat every 2-3 days with a note thanking the staff for their caring attention and patience.
4. most importantly, reiterate to each doctor something like this: 'I understand it is hard to chat with me on top of everything else. Fortunately or unfortunately, I am the token medical in the family and it greatly eases my family's concern when I am 'in the know' and can reexplain things to them when they get confused. As I am sure you are quite aware of, non-medicals can get easily overwhelmed and forget the 'whys' a lot. By explaining once to me, I can explain 10 times to them and keep them calm and compliant.'

if you are not medical, go with something like this: 'I understand it is hard to chat with me on top of everything else. it greatly eases my family's concern to know that one person is keeping track of all the information so we can learn more on our own time. by having everything written down, i can reexplain things to different family members when they get involved or get confused. As I am sure you are quite aware of, patients and family members can get easily overwhelmed and forget the 'whys'. By explaining once to me, I can explain 10 times to each involved family member and keep them calm and out of everyone's hair.'
5. read about the disease, tests, and treatments being discussed. now, no one would expect you to become a doctor or disease specialist, but you can improve your odds of getting good care if you know the right questions to ask. reliable 'plain speak' about medical issues can be found at WebMD or its more technical 'sister' eMedicine.

getting updates basically revolves around being polite but doggedly persistent and informed but not a know-it-all. if things aren't right, do not hesitate to say so and be committed to being a friendly but immovable rock until they are fixed.

finally, don't forget to take care of yourself. if you don't, who will be left to be the advocate?