I wrote a blog a few months ago about predators who prey on Alzheimer’s patients once before on my blog, but here I am again reporting on another incident that is very disturbing. I am in the process of putting my end of life plans in place. This incident involves a doctor that maintains a website where he encourages people with cognitive disorders to use his services to customize an advanced directive that is tailored specifically for people with dementia. He offers three different options, all of which are done online. You pay the fee, complete a survey and then he generates a rough advanced directive for you to review with him so that you can finalize it. For the most expensive option he will also make a video of you expressing what your wishes are when your quality of life declines so that the doctors, hospice, and hospitals will adhere to your wishes. He also claims that these advanced directives and Do Not Resuscitate Orders are customized by State so that they will be legally enforceable in the State the client lives in. This is where it gets very shady.
I purchased in advance the most expensive option which included the advanced directive as well as the video. Once I completed the survey I met over the phone with the doctor. He preceded to explain to me that he would need my medical benefit information and that I would be responsible for his fees which he would send me at the end of the call. We discussed my advanced directive and ended the call. When I got the email from him with the bill attached it was for $1000-$1500. It was not clear what these additional fees were for. I sent him a follow up email asking him for clarification. He told me it was to complete thee advanced directive and the video. I then followed up with him and sent him screenshots of his website asking him “where on your website do you indicate that there are additional fees”? (I included screenshots of all three options he was selling and NONE of them mentioned additional fees).
He responded saying that the fees listed on the website were the initial fees, and that he was sorry he was really busy and when he reviewed his website he could see how it was misinterpreted. I wrote back and told him in no uncertain terms that I am still very cognitively capable, that I am a intelligent person and I clearly see that he is preying on unsuspecting cognitively impaired people or their family members with hopes of billing them additionally for services that he already had documented as included in the initial fee on the website. I did NOT just fall off he turnip truck.
When he read that email, he responded and apologized and said he can see how it was “misconstrued” and that he was updating his website immediately to be more clear about what fees would be charged? Really, you just decided to do it, when you got caught with your pants down, Doctor? He indicated that he would send me the version of the advanced directive and a script I could use to create my own video (he was supposed to do the video as part of the fee I already paid). I agreed to it because I was so disgusted with this despicable human being.
A few weeks ago I met with an attorney in Florida to get my trust, and all other documents, including the advanced directive updated. I gave the attorney the copy of the advanced directive that I paid for from this doctor which he promised would be enforceable in the State of Florida. She reviewed it and said it is not enforceable. I also showed it to my neurologist and she was incredulous that this doctor would try to take advantage of people this way but she was proud of me for calling him on the carpet for this. She also said she was going to report him.
So the moral of the story, is if it’s to good to be true, it is. This Doctors website was very well done, and I was referred to it from two Alzheimer’s advocates. I am so disappointed, but I am moving forward with my plans and I will make my own video stating my wishes when my cognitive abilities decline with the hopes that my wishes will be met. Since then I found two options that maybe of help to other people with cognitive disorders who would like help in establishing a customized advance directive. The Supplemental Advanced Directive or Dementia by the Final Exit Network is an excellent document that you could share with your attorney.
Also, the MyDirectives website is a excellent resource for people to upload their advance directives, power of attorney, etc to the website and it also allows you to make a video and provides coaching tips to do so. You can then provide the website to your loved ones and they can share it with your care staff when the time comes.
Not today, Alzheimer’s, Not Today!