There are a number of books and articles titled The End Game, but I am writing today about the real end game. It is a game most of us play at some time in our lives; it could be with a spouse, a relative, or a close friend or even yourself. In the end, we will all pass on from this life, but none of us have a crystal ball and therein lies the problem.
My father had to have his implanted pacemaker of twenty-years replaced. What is normally a fairly simple procedure ended up in a 6-hour surgery because the leads were entangled in his heart muscle. My Dad barely made it, but the surgeons about to give up during the surgery, said,“This is all this guy has at 82 and if we don’t get a new pacer in, it’s the end game.” Well, they did it. My Dad opened his eyes after more than fourteen hours of medical procedures and recovery and said, “Am I alive?” When I said “yes”, he said, “Are you sure? Pinch me.” He remembered at one point the surgeon put his hands on his shoulder and said, “God must really love you.” I could tell how special he felt.
However, that joy was short-lived. Two days later, the debris and blood clots from the surgery, floated up to my Dad’s brain and a stroke left him paralyzed, but nonetheless conscious enough to wake up to be the same person now trapped in a nonfunctional body whose heart is beating because of an artificial device. He was breathing on his own and his heart was beating, but to this day, 6 weeks later, the physical debilitation remains. The doctor told us that this is the circumstance of good medicine gone badly. In hindsight, I agree.
At the first diagnosis of a stroke, all of the physicians said, “What you see is what you get.” These elderly stroke patients unlikely even recover to a wheelchair. The doctors asked us if we wanted to unhook the defibrillator and the option of disconnecting the pacer. Emotionally, I knew what my Dad would want and I reminded everyone that he has a Living Will and a DNR or Do not Resuscitate. My brothers felt that Dad should have a chance at life; my mom and I are on the same side claiming that is no quality of life. I have two brothers, so the score was 2 – 2. During the initial crisis, we fought for days and I have never had a fight about anything with my brothers since we were kids.
We have to keep in mind that a Living Will only takes into account dying. It doesn’t deal with the life process, or the struggle that is human nature to attempt to survive and that is exactly what we began to see in my father. At this point, due to non-decision, the point of DNR was moot, my father could mumble and was now on a feeding tube as he gurgled to breath. In a heated argument, I screamed at my brothers, “Is this what you think Dad would have wanted?” We took turns going to see Dad at different times because we were so mad at each other. My brother said, “Why are you so anxious to throw Dad under the bus?”
Six weeks later; it’s very sad to see the debilitation; still in the ICU, what now will happen to Dad? My Dad isn’t a rich man and he isn’t a poor man; he was a teacher for forty years. He owns three homes and has an A/B/C Trust that accounts for his desires in passing, but he’s not passing. If you will, that’s the problem. He has a pacer that will beat as long as the battery is functional. The Living Will and the A/B/C Trust have no bearing on the outcome and are completely useless to preserve the estate that my Dad has worked assiduously to preserve. The key word is preserve.
I see this as a fault in the guidance of law that my parents have been given by some very prestigious attorneys. My parents have spent a lot of time and money to “preserve” all of their hard work and now, it is persona non grata; we as a family must deal with the preservation of not only the estate, but also his quality of life, as he will be moved to the dreaded “nursing home.”
To me, I look at all of this legal work and realize one final step was left out of the Estate Planning process as we are scrambling to preserve what we can while we argue, because we can’t agree since everyone has a different prediction of The End Game for Dad.
I think people are too proud to think that they should have a Medicaid Trust as if it is a denigration of one’s reputation. If they were to have a crystal ball as to the insight of their personal end game, maybe they would feel different about it. I see my mother now wishing that they had taken the true preservation step for an estate, a Medicaid Trust.
Our medical system is very disjointed; we have had to watch vigilantly over Dad and the care and medicine he is getting, to find mistakes over and over. He is in the best hospital while in the ICU, with one nurse per patient. I feel that they give their best effort in the difficult situation; the point is that the situation is that difficult. I’ve now seen my Dad in diapers, yet you still hope for some sense of recovery. Since, this chapter in our lives, I now meet people everyday, in the exact situation debilitated by stroke, Alzheimer’s, cancer and you name it; they are standing right beside us, helpless. Our best hopes are prayer.
As we are looking at nursing homes, the realization is that you have to pledge every asset you own. Nursing homes are in the business of surviving and the patients are realistically in the business of dying. It becomes contrary to our natural compassion and places us in a decision making process that is painful every way you turn. In that respect, The End Game, is about playing in a system of medicine standards of care and insurance codes. In reality, I see the end game as one of preservation; the preservation of human dignity and the legacy and estate of someone who has worked so hard to earn it for the people he loves.
Don’t wait! Investigate the possibility of a Medicaid Trust.