By Marc Braman, Lead Patient
Who should be the first formal member of Patients United? It should be meaningful…symbolic…set the tone…help create the culture….
Should I be that first formal member? Set a good example as the “Lead Patient”? Practice what I preach?
Contemplating…contemplating…INSPIRATION! I knew who it should be!
My mother is the inspiration and symbol for this work (see the picture at the top of the Heroes page). She was one of the most caring people this earth has been blessed with. She died as a patient. There is a beautiful story in her dying. The patient advocate who went the extra, extra mile in her dying is the one who should be the first formal member of Patients United. They are a shining example of what real caring for real patients looks like in the real world.
My dear Mother was dying of cancer. It was definitely her final days. And they were hard. Perhaps harder for us than for her, I’m not sure. She required hospitalization to manage the failings of the body in such dire circumstances. She was obstructed. Her GI tract was no longer allowing food or liquid to pass, but was ejecting it back out. She was vomiting uncontrollably. And the blessing of surprisingly little pain for so long with advanced cancer had passed, and pain had set in with a vengeance. It had been difficult to convince her by phone to go to the hospital late that night, but she would have died at home alone in a pool vomit if she had not. She was so relieved to have the pain managed and the vomiting stopped by the time we arrived in the next 24-48 hours. She was back to being herself and loving on all the staff who were supposed to be taking care of her from her hospital bed. And she did this through her hoarse whisper due to the vomiting that was to be her voice for her remaining days. It was amazing!
It became clear fairly quickly that there was not to be any meaningful recovery or pushing death off any more, just a managing of the final decline. She had managed to continue to function right up until this point as the caretaker for her husband with dementia in a functioning home. Her husband would hallucinate at night, pull all the shades, obsessively lock all the doors, and needed constant reassurance and literally to have his hand held much of the time. There was no way that she could go back home in such circumstances. The care taker needed taking care of. And yet the rules said she was to “get the boot”…she had to be on hospice and that meant she had to leave the hospital and go home. An impossible situation.
The hospital my Mother was in (Dignity Health-Dominican Hospital) really impressed me. Not because of the fancy shiny buildings — they weren’t. But because of the very actively cultivated culture of real caring. I think they called it “human kindness”. But they got really specific and really real with it. Ninety-nine percent of hospitals would do this kind of thing for PR and marketing purposes. This hospital practiced it from the core. They had human beings you could actually talk with and that managed things to work for patients and people and not just make excuses for being helpless and at the mercy of the rules. They managed the circumstances relative to the rules to enable my Mother to have the needed care in the hospital. It was SUCH a relief! Yes, we all would have preferred to have her pass peacefully at home. But in this situation it was much more peaceful for her in the hospital, and enabled us to manage her medical issues, in this place that put patients first.
We stayed with Mom 24/7 for almost 7 days. She expressed how wonderful it was to pass so peacefully, with such love. She went to rest around 4 a.m. the last night.
I had met Sister Rita a day or so before Mom’s passing. She would come around “her” ward very early each morning to check on things. She was one of the VPs at the Catholic hospital. She made sure we were being taken care of and made sure we understood to let them know if there was anything else we needed. Mom had already been moved to a quieter more private room for the latter part of her time. It had helped a lot.
After Mom’s passing at 4 a.m. on day 9, we were exhausted. I made sure we communicated with staff about everything we needed to and the arrangements for Mom’s body in particular, and we (my wife and I) went back to the house and crashed. I later learned that Sister Rita had come around for her regular early morning “rounds” and found that Mom had passed. She sat with Mom’s body, praying for her and us, until staff came and took Mom’s body to the morgue. That act of such pure caring — serving no obvious “practical” or absolutely “necessary” purpose, but that was so incredibly meaningful — touched me deeply.
This is what Patients United is about. Real caring. Not because it is mercenary, or we will make money from it, or we want someone to take care of us when it is our turn so we will pay our dues now, or because it makes for good PR. It is sitting with a dead body because they are/were another person…a fellow human being…they are worth a LOT…and we really actually care. We will be there for each other. Even when one of us is no longer “there”.
Sister Rita, we are honored to have you as member #1 of Patients United. I may not be Catholic, but I consider you my “sister” in the cause of “real health care”. You demonstrate what real health care is all about. May your example inspire millions to really care.