End of life care requires individual family decisions

When anyone brings up the idea of end of life care, you are thrown a political football. Yet, the failure to have these discussions with your loved ones creates an expensive and emotional mess.

I can’t tell you the number of times I’ve been sitting at a table with friends and this issue has surfaced with almost unanimous consent: they all want to die with minimal terminal intervention.

Then why do we spend the majority of our Medicare health care expenditures on end of life interventions?

The answer is probably one of political correctness and emotional attachment — both of which can cloud the decision making process.

This is making the assumption that we could even make the right decision if we wanted to.

Case in point: my father.

Seven years ago when my father was 83 years old he casually asked me to feel a “knot in his belly” on one of my trips to his cattle ranch deep in central Texas.

And, even as a dermatologist, I could tell that he had a pulsatile mass about the size of a navel orange under that cutaneous organ by the same name.

And sure enough, after a trip to the VA medical center, a sonogram and a CT scan, we correctly determined that he had an abdominal aortic aneurysm. And, without intervention, it most certainly would be his death sentence.

So we talked.

I think this is the first of many steps in dealing with elderly parents and end of life decisions. He wanted to know how serious was the surgery, would there be a risk he would end up disabled in the nursing home, or would it change his lifestyle?

As an octogenarian rancher who feeds cows every day, drinks a pot of black coffee, and has smoked at least a half-a-pack of Winston’s since WWII, these were certainly concerns.

So we made a decision: no surgery.

If it ruptured and he died an instantaneous death then that would be the way he would leave our world.

We took this opportunity to also discuss asset management of his household possessions, land, cattle, and bank accounts so that my mother would not be a bankrupt widow in the event of an end of life event for either of them.

Time passed and my father lived in constant fear that the rupture could come at any moment.

Fast forward two years: I was attending a medical meeting in Austin, Texas and my father calls at 7 a.m. This is not his normal routine so I was immediately concerned.

He quickly told me that he was having abdominal pain, pain in his legs, and was feeling dizzy. He was rupturing his aneurysm.

I told him to get in the car with my 80 year old mother and drive straight to Providence Hospital in Waco — 90 miles away.

I was hoping I could temper the dangerous caravan of my mother’s driving by calling ahead and warning the emergency room. Within 20 minutes of his arrival we had confirmed that he was dissecting his aneurysm and death or surgery was imminent.

So, we talked.

The doctor suggested surgery and since he had made it to the ER, I encouraged him that he needed to give it a try — my mother was concerned about the cost. (She is very frugal).

So he had the surgery, was in the ICU for four hours, and checked out back to home in 5 days. That was five years ago.

Now my 90 year old father still feeds and takes care of the ranch, drinks a pot of black coffee every day, and yes, still smokes a half-a-pack of Winstons. Very happy, very productive. No other health complaints.

So did we make the right decision 7 years ago when we agreed not to pursue treatment?

To our family, it was the right decision at the time. So when people make statements that make it sound like end of life care is easy, they are dead wrong. It never is.

But, there are probably some lessons here that we can learn from.

First, you must have the “discussion.” It is imperative that you talk to your parents or older loved ones early — while they still have all of their faculties and can participate in the decision making process.

These discussions are never easy. But it puts the wishes and desires of the parent in concert with those of the siblings. My discussion was easy with my parents, and my sister and I get along so well that there was really no differences of opinion. But it doesn’t always work out that way.

You most certainly should formalize a living will. This puts pen to paper and makes the end of life time event easier because there is less opportunity for confusion on what was decided during the “discussion.”

And finally, everyone needs to consider the financial impact of any end of life decision. This time is almost always the most expensive health care experience for any patient.

It is not uncommon for spouses to be left bankrupt with years of bills to pay There is also the issue of sitters, home nursing, and medications that also can feed the final costs of someones life.

The government has gotten much stricter on families using their own assets to manage the end of life — even if it will be detrimental to the surviving spouse. So don’t think you can just “transfer assets” into your kids accounts and that will satisfy the requirements to get the nursing home expenses paid for by the state (Medicaid).

You should enlist the help of a knowledgeable attorney on all of these end of life decisions. That information can go a long way to making it more understandable for all the parties involved and that the older person’s wishes are maintained.

Unfortunately there is no book in the mainstream press on how to deal with elderly parents like we have with pregnancy (such as: What to Expect when You are Expecting).

So, everyone has to write their own conclusion.

Dan McCoy is a dermatologist who blogs at docdano.com.

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