Personal health advocates
Going to the doctor, hospital or ER? Did you remember to pack your personal Advocate?
Advocates are friends, family, neighbors who care about you and want to help make sure you have the best possible hospital/doctor's office experience. Having a respectful advocate stacks the deck in your favor when you are not at your best.
Advocates can be your eyes, ears, memory and voice. They are present to lend their voice of reason, their hands and their legs, and they stand up for you when you are unable to stand up for yourself. Advocates support you when you need it the most.
Advocates are heroes.
Who can be a personal advocate?
Choosing an advocate is not something to be considered lightly, and is best done before you find yourself in need of one. Anyone you feel confident will be available and have the energy and presence of mind to assist you when you need them can be your advocate and helper.
Think you know the perfect person? Consider creating a written list of more than one helper. If your hospital stay is long, or your first choice is unavailable, you need a backup or two. If you know you will be spending a long time in the hospital, or you need an advocate with you frequently, consider a team.
Natural advocates are those closest to you - family and friends who know you, care about you and are somewhat familiar with your medical situation. Additional advocates may come from your neighborhood, church or support group. Sometimes good advocates are friends of a friend who are interested in helping you.
The most important thing all advocates have in common is: they are on your side.
What does an advocate do?
An advocate can help you at the doctor's office by keeping track of the questions you wanted to ask, and the answers you're given. They can write down notes and instructions or take control of a micro-recorder. They are often there to back you up and can often give additional information a doctor is looking for. Your advocate is there to hold your coat when you're weighed, and confident enough to ask for something you may be too shy to request. Sometimes advocates act as translators, translating from your language to another, medical jargon to english, or even helping you understand a doctor's heavy accent. Advocates sometimes help ease tense situations simply by their presence.
An advocate can help you in the ER by signing you in, answering questions, holding possessions, reminding the doctor of your medication allergies, holding and providing important information, making phone calls, filling out paperwork. Sometimes advocates find themselves in need of kindly standing up for a patient if staff has forgotten something or act like bullies.
An advocate in the hospital is often needed for all these reasons and many others. They might go to the cafeteria to get you an apple, or hold your hand when you are in pain, or hug you when you need support. They fluff pillows, get blankets, refresh water and keep you company. Advocates need the energy and fortitude to ask questions the patient may be reluctant to ask ("What is the medicine you're giving him?"), or stand firm to be sure the patient's wishes are followed ("She has requested no pain relief drugs right now"). Sometimes the advocate just says "thank you" when the patient can't.
Advocates are friends, family, neighbors who care about you and want to help make sure you have the best possible hospital/doctor's office experience. Having a respectful advocate stacks the deck in your favor when you are not at your best.
Advocates can be your eyes, ears, memory and voice. They are present to lend their voice of reason, their hands and their legs, and they stand up for you when you are unable to stand up for yourself. Advocates support you when you need it the most.
Advocates are heroes.
Who can be a personal advocate?
Choosing an advocate is not something to be considered lightly, and is best done before you find yourself in need of one. Anyone you feel confident will be available and have the energy and presence of mind to assist you when you need them can be your advocate and helper.
Think you know the perfect person? Consider creating a written list of more than one helper. If your hospital stay is long, or your first choice is unavailable, you need a backup or two. If you know you will be spending a long time in the hospital, or you need an advocate with you frequently, consider a team.
Natural advocates are those closest to you - family and friends who know you, care about you and are somewhat familiar with your medical situation. Additional advocates may come from your neighborhood, church or support group. Sometimes good advocates are friends of a friend who are interested in helping you.
The most important thing all advocates have in common is: they are on your side.
What does an advocate do?
An advocate can help you at the doctor's office by keeping track of the questions you wanted to ask, and the answers you're given. They can write down notes and instructions or take control of a micro-recorder. They are often there to back you up and can often give additional information a doctor is looking for. Your advocate is there to hold your coat when you're weighed, and confident enough to ask for something you may be too shy to request. Sometimes advocates act as translators, translating from your language to another, medical jargon to english, or even helping you understand a doctor's heavy accent. Advocates sometimes help ease tense situations simply by their presence.
An advocate can help you in the ER by signing you in, answering questions, holding possessions, reminding the doctor of your medication allergies, holding and providing important information, making phone calls, filling out paperwork. Sometimes advocates find themselves in need of kindly standing up for a patient if staff has forgotten something or act like bullies.
An advocate in the hospital is often needed for all these reasons and many others. They might go to the cafeteria to get you an apple, or hold your hand when you are in pain, or hug you when you need support. They fluff pillows, get blankets, refresh water and keep you company. Advocates need the energy and fortitude to ask questions the patient may be reluctant to ask ("What is the medicine you're giving him?"), or stand firm to be sure the patient's wishes are followed ("She has requested no pain relief drugs right now"). Sometimes the advocate just says "thank you" when the patient can't.
Comment
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Comment by Sarah on August 23, 2009 at 8:11pm -
I've had to do the sudden ER visit before ... and I went by myself. It was kinda stupid, really, because I couldn't have any meds for the pain I was in since I drove myself. I do have someone I could call, but I would feel guilty about doing it. She wouldn't feel imposed on but I would feel bad for doing it. LOL
I have been going to the same hospital/doctors office for so long, all of my medical records are essentially in one place - and I am very vocal about what I want and what I don't want when I'm in the hospital. However, I do understand that if I'm NOT coherent, that's going to be really hard.
I don't have an advanced directive filled out ... this is probably something that I need to do. I will have to check it out and be sure I get one on file with my doctor's office. Thanks for the suggestions.
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Comment by Ellen S on August 23, 2009 at 7:14pm -
An advocate is not a bully, even if the staff turns out to be bullies.
An advocate is often silent unless spoken directly to.
An advocate doesn't interrupt.
An advocate isn't nosey or intrusive.
An advocate is kind, respectful, and courteous, even while needing to be firm.
An advocate knows his/her job and sticks to it.
An advocate is there to help you get the most out of your visit.
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Comment by Ellen S on August 23, 2009 at 7:01pm
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Sarah, if your cell phone has a speaker option, this could be a great tool for you. You'll need to ask or let your doctor know this is what your wishes are. You might have to provide him/her some good reasons as well, but if you want an advocate/helper with you and this is as close as they can get, it's well worth the effort in my opinion, so long as your advocate is prepared. Bringing a smile with you and a tin of warm chocolate chip cookies goes a long way too. :)
Like you, I'm pretty independent, and really don't like having to ask for someone to come with me. Sometimes I can't drive or speak, so there's just no option. Where I value my independence, I've had medical mistakes happen to my family in the past (it's very common as a generality) and the trade-off is a necessity for me both physically and financially (did you know you may still have to pay for many mistakes?) Frankly, when you have a "rare" disorder (like dystonia and autoimmunity issues) which make it nearly impossible to treat a commonly "abused" diagnosis like Migraine, the red flags are already flying before I walk in the door. My experiences are worse than most I assume, but judging by the number of goofs we've found when I go to help advocate for someone else, I suspect ignorance is often bliss.
I guess deciding how far to pursue this might be determining first how important it is to you. If you're keeping paper copies of all your records and have them ready to use... if you're writing everything down or using a recording device to help you remember things.... if you're making a short list of questions for your doctor ahead of time, then using it... if you've made available your current meds/supplements/herbs and your personal health history on paper so it's easy to hand to a doctor... If you ask appropriate questions like "Doctor, what tests have you ordered for me today?" and "Nurse, which tests will you be drawing blood for today?" (and checking to be sure the two answers match) you are already more prepared than most. Not everyone needs an advocate, I just tell patients with chronic issues that they're probably better off having someone there they don't need, than needing one and being without. Some doctors will love you for having a helper, others will not appreciate it at all. You have to be the judge which is right for you, then stick to your guns.
Something to consider - What will you do if an ER visit is suddenly necessary, or you find yourself in the hospital? Do you have someone that can help you then? Do you have an advanced directive filled out?
Interestingly, I just ran across a thought provoking post from Diana Lee on Somebody Heal Me asking the question "Should you bring a loved one to your doctors' appointments?" She provides several links to related posts and questions that are worth reading as well.
As per my analogy, you can still play cards without stacking the deck, but it's much easier to win if you have a little help.
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Comment by Sarah on August 23, 2009 at 5:25pm
- Ellen, what would you recommend when you don't really *have* a health advocate? I have a circle of friends who love me dearly but oftentimes they are not physically close to me and can't be there if I need to go into the hospital or something. Even my family is far enough away that it's a bit of a stretch to help take care of me. I am also fiercely independent and have a hard time accepting help even when I know I need it. Oftentimes my cell phone is one of my main advocates as I know even if my friends can't be right there for me, I can reach them through the telephone. Any suggestions?
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Comment by Ellen S on August 23, 2009 at 12:41pm
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Thanks so much Kathleen - it does help to know it happens to others too, even nurses. =)
Since you have a different perspective, I hope it's okay if I ask you... What would you add to this post re: having an advocate/helper with you? Would love to hear other ideas.
Now, to finish a post on packing an Advocate's Bag....
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Comment by Canary3 on August 22, 2009 at 8:21pm - Hi Ellen,Just checking in to see if you are feeling any better. So sorry to hear about your hospital nightmare,with time, the memory will fade. Your advice for an Advocate is excellent,noone is there to protect us @ our weakest moment. Everytime I have been hospitalized in the past,it has left me traumatized,and I was a nurse years ago. Take Care, Canary3(KathleenW)
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