How fast the changes have come these past few weeks regarding the Medicare provision to reimburse doctors who discuss the options for how patients want to be treated in their final days.
The New York Times story on December 26 announced a Medicare provision to encourage end-of-life conversations during annual physical exams being instituted by regulation January 1. Then a “death panel” hue-and-cry erupted, crying foul since the provision had been dropped from the 2010 Affordable Care Act legislation. By January 5, the White House pulled the provision, saying there hadn’t been enough chance for all sides to comment on the change.
I’d like to add my comment about having end-of-life planning discussions. Yes, they are a tough conversation to start. But, just as talking about sex won’t make you pregnant, talking about end-of-life issues won’t make you dead – and the family will benefit from the conversation.
The conversation is not about “pulling the plug on Granny.” It’s about how you want to be treated when you are older (as we know, Medicare’s for those over 65) and health is failing. It’s an opportunity to speak your wishes and get it in writing, so everyone’s on the same page about your care.
When you are unconscious, or delirious, or just not able to make your own health care decisions, it allows your family to know and carry out your wishes. In the fluorescent glare of the ER, it’s hard to remember what those wishes are.
Our family’s experience is a lesson in the need for advance directives. My 82-year-old father-in-law had fallen and broken his hip, and he did have advance directives in place. The family was exhausted after his seven weeks of hospitalization, battling pneumonia and allergic reactions during rehabilitation after hip replacement surgery.
On his third ER admission with difficulty breathing, the doctors told us my father-in-law’s body was tired and broken beyond repair. They recommended he be admitted under palliative care, where he would be kept comfortable, but not “fixed,” and nature would be allowed to take its course.
Dad incoherently rambled, refusing a DNR order. Mom, the named decision-maker, was sad and torn. The monitors beeped, the oxygen hissed, the doctors waited for an answer. She looked to my husband and I to help make the decision. Based on Dad’s advance directives, we agreed to the palliative care.
Dad died peacefully in the hospital a week later with the family gathered around him. But even with the advance directives in place, there was family conflict over his care.
My husband’s brother who lived out of town insisted steps be taken to make Dad better. Nebulizer treatments were ordered, but they could not help a man who literally inhaled everything he ate or drank. A feeding tube was inserted, against written wishes.
We had Dad’s statement that he wanted comfort care, not heroic measures, to guide us during his last days. He had made up these advance directives under the advisement of his doctor, after Dad barely came through his third open-heart surgery twelve years earlier.
Would Dad have made up these guiding documents on his own if his doctor had not told him to do so? It’s hard to say. I’m glad we had his advance directives, but real life is messy.
Just because something is written, if it’s not discussed within the family, conflict can erupt when the end is near. The one thing Congress or the president can’t legislate or regulate is families talking to each other.