Below is one parent’s experience fighting a denial of hospice coverage to ensure continued access to this valuable service for their son and family.
This disease requires that your family find strength and courage to keep going forward. Our 29 year old son has an advanced diagnosis of FTD. In May of this year we were notified that the effective date for coverage of hospice services would end on May 28th 2010. We, as Brad’s parents and his only voice, filed an immediate, independent medical review (appeal). The independent reviewer asked many, many questions including why we felt he needed hospice care. You can also submit any additional information in writing that you want. We asked Brad’s neurologist to send a letter in support. I don’t think that we would of been successful without the detailed letter that this FTD expert sent in support of continued hospice care for Brad.
The guidelines that are used to measure qualifications for hospice care for patients suffering from FTD or any other form of dementia is all based on criteria around Alzheimer’s disease. How unjust is this! They talk about following the usual course of the disease. PLEASE, there is nothing usual about frontotemporal dementias except to expect the unexpected. The main problem with these guidelines are that patients with FTD are dying without hospice support because their disease leaves them young ,strong, and usually mobile until the day they die.
Hospice care is underutilized because it is set up to fail these patients. One of the indicators for decline that they look for is aspiration pneumonia. Choking and aspiration would occur easily if we didn’t insist on Brad being fed or at the least having someone assist him while he tries to feed himself. Should hospice care be withheld or discontinued from our son because we protect our loved one from not choking? It can require extra coordination and advocacy to present FTD symptoms and signs of progression in a way that hospice recognizes and understands as fulfilling their guidelines.
When our son was able to talk with us he would ask, “am I safe?” We promised him that we would keep him safe. The most important thing that we have found with this disease is that it is so much better to be proactive than reactive. We prepare by planning for the worst, but hoping for the best and dealing with the rest.
We would be happy to share more about our experience with hospice or the appeal letter if it would be helpful to anyone facing a similar situation.