My brother Mike is in hospital. It is bad enough that he is not allowed visitors, but he is autistic, low functioning and nonverbal. Mike has been a regular at the hospital. His care givers pay close attention to keeping him healthy. His problems are now worse than they have ever been. He is 70 years old, had a urinary infection, a possible new infection in his lungs, has a pulmonary embolism, being treated for deep vein thrombosis and needs a bipap machine to keep his oxygen level up.

The hospital was nice enough to provide video visits, so I can see Mike*.   My younger brother Dave and I have been in contact with the doctors who told us of Mike’s problems and about an urgent need for permission to connect Mike to a ventilator.

Today Dave and I were contacted by the Palliative Care Department. The doc was very nice and we discussed Mike’s quality of life and the possibility of his returning to the normal life he had in his group home. Dave and I were not clear about who has the authority to make these decisions, and the doc said that it isn’t particularly clear to doctors either. She told us that she is filling out forms for at least 3 different state agencies, she is getting our input and also said she was getting input from Mike’s care givers at his home.

We made our wishes clear and hunkered down for a holiday weekend.

Dave contacted me and merged our call with upset care givers at Mike’s group home. They were not contacted directly. Palliative Care contacted the home’s legal department as if decisions were already made. Fortunately, legal alerted the care giving staff. They got the message that Mike was to be removed from the bipap machine per our request! This was clearly not true. Dave and I immediately began setting the record straight. We tried to clarify our wishes to the Palliative Care Department. I was unable to reach the doc directly and had to be satisfied with a phone message; I also sent a text to the same phone, hoping it would be retrieved.

Dave forwarded my text to the home who said they would follow up with Palliative Care. We don’t expect any changes to be made over this holiday weekend but are hopeful that our wishes are now clear to everyone along the chain of command.

The purpose of this post is to give this advice:  Do not assume that your message is understood the first time. Keep telling it to all concerned and follow up with everyone including the people responsible for carrying out your wishes.

My Big Brother and Me

This photo of Mike and me is about 60 years old. I still love Mike even though we have never spoken and I don’t know if he knows me.

*(See the following posts of sketches I drew of Mike during these sessions: Hospital Visit with Brother Mike, Another Hospital Visit with Mike, Mike, Very Stressed, Mike in Respiratory Distress.)