Cunningham-Ramos AML & Stroke after TBI Journey

Two weeks ago when Daniel’s wife, Lauren, was spending the weekend with us ( she has been in training about 1.5 hours away), Kim had what appeared to be an Atrial Fibrillation / transient ischemic attack (TIA) that was like none of the others he’s has over the years. He was shaking uncontrollably while being fully alert. His speech got slurred for a few minutes which meant he had had a mini stroke. It was a very scary episode as I really thought he was going to die.

Fortunately, having Lauren here was a blessing. She helped me call the Hospice’s phone number that I was told is the equivalent to 911. The person who answered the phone and took the information I related, said that a nurse will call me or will come to the house right away. Well, this is far from the truth in this instance! Three (3) hours later, way after Kim had fallen asleep and I had ‘passed out’ on the couch next to him, I got a call from a nurse. She proceeded to tell me that I could have just given Kim a medication ( any medication I deemed suitable) from the care package. I was shocked, not just by the huge delay in responding, but also by being told to administer any drug, among which is morphine and other heavy drugs. How would I know what to administer Kim? And why give him any of these medications for an event dealing with his heart?

On Monday, the head of quality for the hospice business Kim is in, called me after I escalated my complaint. She agreed that I should have gotten at least a call back within minutes. She said they were short staffed. Though I’m fully aware that hospice is not meant to ‘save’ or prolong lives, I do not want Kim to die before his time just because he did not get first aid assistance. Just like the responsibility for Kim’s care falls squarely on my shoulders, so does helping him should an emergency arise!

I realize that, though Kim is a perfect candidate for hospice because of his terminal diagnosis and all of his irreversible health issues, the hospice organizations are mainly set up for those who are fully bed ridden and within a few days or weeks from dying. 75-80% of those who enter hospice die within 1-4 weeks. The remainder can last months and even years. This is proving to be the case for Kim.

Hospice is a business! A shocking finding of which I became aware of soon after Kim entered hospice. Hospice is now a $19 billion industry, almost entirely funded by taxpayers ( see article at bottom of this post). As such, they are driven by keeping their organizations financially ‘healthy’. Kim is only seeing by nurses who come every 2-3 weeks and are mainly taking notes and ordering needed supplies.

Though I’ve decided to continue to keep Kim under hospice care to prevent him from all the pain and suffering from medical intervention given his prognosis, I now have peace of mind having learned that I can revoke hospice on the spot and call 911 should Kim need emergency care that hospice cannot or will it provide.

For more on Pros & Cons of Hospice Care : www.verywellhealth.com/pros-and-cons-of-hospice-care-1132299

Patients want a ‘good death’ at home but Hospice care can badly strain families: Hospice is a lucrative business: https://www.healthleadersmedia.com/clinical-care/patients-want-good-death-home-hospice-care-can-badly-strain-families

Quote: Hospice is a $19 billion industry and is a lucrative business. It is now the most profitable type of health care service that Medicare pays for.