A WELL STYLED LIFE

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July 17, 2014

Reality Bites...or Tips For A Patient Advocate


My life is not all sunshine, wine tasting and roses... Oh, did I surprise you?

Tips on being a medical advocate



"Most patient advocates are women who have been through some kind of complicated encounter with the medical delivery system, either for themselves or a family member or spouse. “They know what it’s like to feel lost in the system."
~Forbes









Last year my brother-in-law was diagnosed with a very rare form of Liver Duct Cancer. This year he is loosing his battle with cancer.  I'm his patient advocate...with him, every step of the way. 


Nursing Clog
I've been able to stop wearing my walking cast and moved on to Dansko's.

At some point, most of us will need to care for an ailing parent, sibling, child or friend. These are things I have found valuable...learned in the hospital of hard knocks.


TIPS FOR A PATIENT ADVOCATE

1- For greatest efficiency, working within the stringent HIPAA laws, have the patient sign a formal waiver making you their legal medical advocate, allowing you access to their medical information and test results...and have it notarized. Be certain you carry a copy with you.

2- Be very clear what the patient wants you to help them with. How involved do they want you to be? What decisions, if any, do they want you to make for them?

3- Keep a notebook in hand when talking to nurses, doctors and other care givers...whether you are on the phone or in person.

4- Utilize the Internet and library to learn all you can about the disease or condition the patient is struggling with. Educate yourself on the prognosis and complications that are possible with their condition.

5- Be clear what information the patient wants disseminated to family members and respect the patient's wishes. This is a highly emotional time for family members and you need to remain focused on the patient's needs.

6- Be prepared to ask for help if or when you feel overwhelmed. The patient needs you focusing on their issues, not their family's or your own.

7- Be polite but persistent with medical staff, to be ensure you understand them... and they understand you won't accept "no" as an answer to critical questions.

8- As a patient declines, their wishes and opinions on care expectations may change. It's your job be certain they get the care they require and want.


Dansko clogs


Here I sit, most every day. He tells me he feels safer when he can see my face, which rips my heart out...but confirms I'm doing the best I can for him.

We called in Hospice this week and hope to get him out of the hospital very soon.

Have you been a patient advocate?

50 comments:

  1. Oh Jennifer! I am sorry it has gotten to this stage. Having served as an advocate for both of my parents, I think your list is right on. He is so lucky he has you for this journey. Much love.

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    1. I'm late but wanted to thank you Wendy! I was the advocate for both of my parents also. It takes a lot of strength but also takes a toll.

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  2. Such important, blessed work you're doing. I know it has its significant rewards, but it's also so difficult. Take care. . .

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    1. Thank you. The rewards are huge and I'm proud of being able to ensure he died where he wanted to, with dignity and loved ones around.

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  3. Ah Jen, you must be rent asunder.

    Well yes, I suppose I was for my Dad, just thinking back I have no idea how I made it through, I remember the agony of trying to brace myself before walking into the ward each day and breaking the worst to mum, pfft, I don't what to say other than what I've said by email.

    Wish I could hold out my hand to you just now.

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    1. Thank you so much Tabs. You've been a good friend through this. Thank you for all your support and the shoulder to lean on. Your the best.

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  4. You've taken on a difficult but very important job and I hope that you are keeping your spirits up.
    It must be a great comfort for him to have you at his side...
    I have heard that human touch is the last sense to go and I help my father's hand until he passed on and it just felt like the right thing to do...letting him know that I was there in support until the end.
    Take care of yourself.

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    1. Thank you so much. I touched his head and held his hand for hours and days as he died. I encouraged other family members to do the same. Touch is crucial and I know he felt us.

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  5. You are just beautiful. Much love.

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  6. What valuable advice this is and such a wonderful service you are providing your brother-in-law in his last days. Yes, women (daughters, wives, sisters, etc.) are often the ones this is either thrust upon or more often assume (and heroically as in your generous case) as I witnessed with my declining paternal grandmother where my dear Auntie J carried nearly the full load. I also need to be thinking ahead as I have family who may require similar support someday soon.

    Jennifer, you are an angel!

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  7. He is so blessed to have you. My husband has been my patient advocate though not one but two fights with breast cancer. Both times it was caught early. Do to his persistence and mine I did not have to endure chemo, just targeted radiation. Being knowledgeable is crucial and keeping careful notes is very helpful. May god speed.

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    1. Thank you. Your are blessed with a wonderful husband. My prayers and good wishes for your continual good health.

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  8. Sending you love and supporting thoughts. The world is blessed to have people like you ! xoxo

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    1. Thank you so much. Where has your blog gone??

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  9. Very sorry Jennifer my heart is breaking for you. You have done your absolute best and I too think you are an angel. Love to you and to your brother-in-law.

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    1. Thank you Dani! I'm just getting back on my feet now. He passed peacefully Aug 1.

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  10. Sending you my love...what a lovely lady you are. xx

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  11. I've lived through this experience and I urge you to take care of yourself as well. Exhaustion and stress can make for a less effective advocate....I'm sure you know this already....but just a gentle reminder.

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    1. Thanks for the advice. I didn't have time for myself until after he passed. It felt like I had almost unfathomable strength, as long as I needed to...after he passed I began my own self care.

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  12. Jennifer, this is such important and true information. I learned early on the importance of patient advocacy … watching my mother champion my sister … who had not only down syndrome … but a heart defect as well. It was a life long battle … even to the end of her 23 year old life.

    I still believe we all need advocates with us … during any challenging medical situations. When I had cancer … my husband was with me every step of the way … I can't even imagine having to deal with hearing the words and advice by myself.

    In my opinion … you are doing one of the most noble jobs in life. Being there … in support, love and protection … as your brother in law prepares for his transition of the end of this life, as we know it. You are using your strength and soul … in the most amazing way.

    I know how painful the process is … so I am sending you strong thoughts of love and strength … as you continue in your protective, supporting role.

    I am ever so proud to call you friend.

    Much love to you my dear,
    Tamera

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    1. Thank you so much Tamera! I felt your support and love! xoxo

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  13. YOU hang in there................I know it cannot be easy!
    XOXO

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  14. I'm so sorry you have to go through this. He's lucky to have you as an advocate. I was a tough mama bear for my son. Luckily we are now in greener pastures but it's a hard place to be. Hugs.

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    1. How tough to have to do it for your son!! I simply can not imagine. xoxo

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  15. No I haven't but my mother is getting more and more frail and I doubt it will be long. She has always been so fiesty and keeps her doctor's in check (drives them crazy I'm sure). I appreciate these tips and send you love and strength for your journey.

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    1. Thank you. Good luck with your Mom Barb. My Mom was feisty too...and it was much more difficult.

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  16. A very practice and heart felt post. I wish you well.

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  17. Oh, I am so sorry that it has come to this, but I know how lucky he is to have you as an advocate. I was the advocate for my husband throughout his decline from Dementia. When you wrote that your brother-in-law said he "feels safer when he can see your face" you reminded me so much of my dear husband, and how watching him, and he made that same statement, would rip my heart to pieces even as it consoled me, knowing that I was doing everything possible. That simple time together is a gift to both of you. I send you my prayers for strength and peace.

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    1. Thank you Mardel. I can not imagine how difficult it must have been to care for your own husband!!xoxo

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  18. Oh I'm so sorry Jennifer, I'm so sorry to hear that it has got to this stage. A wonderful and heartfelt post. As Mardel says he is lucky to have you as an advocate. I have never been in this position but these are all great pointers if you find yourself in the medical system.

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  19. I have never faced this challenge (as of yet knock on wood). You are very brave, Jennifer. What a great idea to put a list together for other people going through this process. All the best to you.

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  20. My heart hurts for you both. Yes, I had to advocate for my mom through her illness last fall, including navigating through two hospitals, many doctors, social services, at home care, two nursing homes, and hospice. It was overwhelming and exhausting but I'd be happy to still be doing it if it meant Mom was still around.
    Hugs!
    OXOX
    Dawn Lucy
    http://fashionshouldbefun.blogspot.com

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    1. I remember how hard it was for you. You were an angel to help her.

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  21. Jennifer, I don't know how you are doing it. It's a strain and exhausting. You are doing such a wonderful thing though and how wonderful just seeing you there makes him feel safe. You are an angel. xx

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  22. My sister and I shared the work as our parents grew older, their minds and memories preceding them on the the long sad journey from frail to fragile to oblivion. Now I go with her to key medical appointments. It's so important that someone who's not the patient be there, to listen, to question, to request that instructions be repeated. You are doing a good thing, and you're not alone .

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    1. Sending you strength and warm wishes as you travel this journey with her. It isn't easy, as you know. But so valuable.

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  23. Jennifer, I am so sorry I missed this.. We all need advocates when things get rough and life takes a turn. It is heart wrenching to see someone that is in decline. My father passed away less than a year ago and I recall the hospice days. I remember asking the nurses if he could be brought to the "main" room rather than in the hospice bed. It was tough to keep it together seeing my dad in that (hospice) setting. I'm so sorry .. this is a very exhausting time. Take care of yourself and reach out to me or any of your readers ..
    we are here.

    Sending love, hope, and peace.. xxleslie

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    1. Thank you so much Leslie! I remember when your father passed away. It was a very tough time for you. I'm just starting to get back on my feet now after his death 3 weeks ago. Thank you for your sweet comment.

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  24. Jennifer, the information you've shared in this post is spot on. I lived through it as I watched my mother care for my dad during his battle with Alzheimer's.
    Keeping you and your loved one in my thoughts and prayers.
    (((Hugs)))

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  25. Hello Jennifer-Just stopping by to see if you have published a new post and I read this one again. What a touching, informative and meaningful post you have written. I remember responding to this but my iPad ended up not posting my comments. I want to say, one more time, what a gesture of love, kindness, respect and care you have given to your brother-in-law. You made his moments so meaningful. That's you, true blue to the core. Thank you for sharing this personal and touching post.
    xx, Heather

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    1. Thank you Heather, it means a lot coming from you. I'm proud of the job I did for my brother-in-law and so grateful he entrusted me with the job of helping him live out his life with dignity. xoxo Jennifer

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