My incredibly intelligent father, with a PhD in chemical engineering and over 50 US patents to his name, called the other day to discuss his living will. Like Dr. McCoy in Star Trek, especially compared to my dad, I like to say “I’m a Doctor not a…”. However, in this particular instance my twenty years in emergency medicine gave me the ability to actually be “smarter” than my dad. The sad part is that my smarts came at the expense of participating in too many people dying and too many conversations with families that didn’t know what the dying person wanted.
Interestingly, after knowing my father for 57 years, I still didn’t know some of his preferences for end of life care. Fortunately having the conversation was easy since we had many similar conversations about my dear mother. She died earlier this year after too many health “care” episodes including hip fractures, dementia and pneumonia. Gratefully, she died at home with my dad and my sisters near her side. While it was difficult for my non healthcare family members to witness a death, they all agreed it was the right time and right place. Sadly, that’s something most families can’t say about their loved one’s death since over 70% of people die in a hospital or LTC facility even though over 80% of people want to die at home.
I appreciate that the conversation about the end of life is difficult. But I know the conversation is nearly impossible when the person becomes my patient and the family is waiting in the “quiet room”. No one expects to be an ER patient, much less the family member of a dying ER patient. When I talk with the family they are consumed with the shock of a nearly dead loved one. Not surprisingly, they can hardly comprehend, much less decide, about things like “did he want to be on a ventilator?”. The end result is usually indecision resulting in painful, expensive and often futile care. In fact, in 2014 Medicare spent $50 billion in the last 2 months of people’s lives. Fifty billion dollars and the outcome was the same: the patient was dead. And in that 2 months, dying people were in the hospital instead of with their families.
That’s why the conversation needs to be started NOW and it needs to involve moms, dads, daughters, sons and loved ones of ALL ages. You do NOT need a doctor in the family to start the conversation, you can utilize resources like Essential Choices to understand the issues and document your choices. You also do NOT need an attorney to complete and finalize your advance directives. While very state has statutes about advance directives, you do NOT have to have any special form. When you’ve had the conversation with your loved ones, you should then make sure your doctor knows your choices. Don’t worry about taking their time with this conversation, this year Medicare started paying for it.
I like what Dr. Byock said: “I have an advance directive, not because I have a serious illness, but because I have a family.” Do yourself and your loved ones a big favor now. At the very least, start the conversation about “what if” so you don’t end up like a deer in the headlights staring back at me some horrible day.