How to be a Long Distance Medical Health Advocate

Not everyone has a friend or family member living close by who can or knows how to medically advocate for them. While it’s ideal to have an advocate who can come see you in the hospital or when recovering in a nursing home, it’s not always possible. Can a friend or family member effectively advocate for you if they live a distance away? Yes they can!

  

A few months ago my friend Helen, who is a paraplegic, underwent a major flap revision surgery for a wound that would require months of post-op care in a nursing home. Though she had family close by, they were not able to advocate for her medically to the degree she needed. Helen asked if I would be her advocate during this difficult surgery and the long recovery process. Neither of us realized at the time just how involved I would need to be, but our experience led us to realize our story might help others.

We learned so much as we embarked on this journey together. Since we are such good friends, I already knew quite a bit about her medical history and the upcoming surgery. But even though you do your best to prepare in advance, you find too often it’s learning and doing as you go.  

Prior to surgery, Helen made sure I was listed as one of her emergency contacts and gave written permission for them to speak to me about her medical treatment. She stated on paper that I was her medical advocate. Medical professionals were not quite sure what to think of that since I was not a family member, but it seemed to grant me a great deal of respect.  

The need to STRONGLY advocate for her due to constant issues began almost immediately. Our biggest problem while she was in hospital was fighting to have her released to a nursing home equipped to handle her needs. Helen realized too late that she had signed discharge papers prior to finding an acceptable nursing home. However, we received a great deal of help and guidance on this journey from a representative from the Dana and Christopher Reeve Foundation. One of the many things we learned from her was to say that we believed it was not a “safe discharge.” This gave us additional time to work with the insurance company and call multiple nursing homes ourselves to find the best placement.  We battled this for several days but unfortunately due to insurance coverage issues, she ended up being discharged to a nursing home that we believed was not satisfactory. The lesson learned from this hospital experience was to not sign discharge papers until you know it is a safe discharge.

   

The real battle began when Helen entered the nursing home. She started out on a bed that was not suitable for her post-op recovery, did not receive proper medication until the following day, and was not brought any paperwork that should have been explained and given to her right away. We immediately began the fight for the proper bed by first knowing her rights regarding which bed she should have. Then we were in constant communicating with the insurance company, the manufacturer of the bed, the surgeon, the Director of Nursing and the doctor at the nursing home. The doctor eventually wrote a letter of medical necessity (LMN) which we had to rewrite and have her sign. On day 11, Helen finally had the appropriate bed. One battle won with many more to come.  

Every day was literally a battle for proper care. Almost daily there were medication issues. Additionally, there were HIPPA violations, lack of proper equipment, no follow through on complaints, poor communication, delayed responses to the call bell, unprofessional staff conduct, and charting notes were written that did not reflect what happened in spite of being asked to document them.  

I was involved daily, often many hours a day, by phone and sometimes through Facebook Video Messenger to help advocate for her. Any issues we had, I would ask Helen to call in a staff member and it would be addressed by a three way phone conversation. I participated in all meetings, including planning meetings, by speaker phone. Due to so many concerning issues, we often had to involve the CEO of the nursing home to get them resolved. We eventually contacted the area ombudsman as well as the State Department of Health. The ombudsman became a great ally and got a lot accomplished. The Department of Health ended up investigating complaints we made and actions were taken on those that could be proven.   

A huge issue we fought was their attempt to discharge her too early by not advocating strongly for her with her insurance company. Again, we kept saying it was not a safe discharge. She had one physical therapist that was absolutely amazing and worked long hours at night to document why she was not ready to go home. Thus we were able to push back the discharge date three times - extending the stay by six weeks. That gave her more therapy time and crucial time on the Clinitron bed.   

This degree of advocacy together often stressed us to the point of breaking, but we persisted. I wish no one will ever have to experience this, but know all too well from talking to others it happens regularly.  

While this article is just a brief snapshot of what we experienced, hopefully it at least captures how difficult the journey was and that advocating for someone can be done over the phone and bring about positive results. One thing several medical professionals said to us is that they had never seen such strong advocacy from and for a patient. 

 

Here are some tips I wanted to share for those considering this method of advocating.   

  1. Prepare in advance as much as possible.
  2. Make sure all paperwork has the information necessary so your advocate can not only speak on your behalf, but has access to your medical information.  If you have an insurance case manager, get in touch with them early in the process. 
  3. Know your patient rights and use them. 
  4. Know what medications have been prescribed, their dosage and times, and which are PRN (as needed). Do not take any meds unless you have asked what they are and the dosage when the nurse gives them to you. Familiarize yourself with how your medications look. Research anything that you may not understand and ask as many questions as necessary. 
  5. Keep a daily journal that includes any mistakes, issues, or violations and record the person’s full name and their title, day and time of the event, and other details as well.  Climb up the hierarchy ladder if you don’t get satisfactory results on one level.  
  6. Know the resources available to help you. The Dana and Christopher Reeve Foundation’s representative, the area ombudsman, and the State Department of Health were all valuable resources. 
  7. Trust your gut instincts. 
  8. Never give up fighting for proper care and your rights as a patient!  

 

While being in hospital and/or a nursing home can be a very stressful time, hopefully these tips will help things go smoother for you. Be and have a strong advocate! 

Caroline 

 

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