Saturday, June 21, 2014

Making the End of Life Decision: Why It's Not a Simple Issue

This past week the death of legendary radio host Casey Kasem brought to life the debate over the medical directive (often called a "living will") and end of life decisions. Although Kasem did have a medical directive indicating he didn't want to be kept on life support, his wife wasn't ready to give up hope while Kasem's children wanted to pull the plug.  In the end, Kasem's children prevailed in court.

Writing in the USA Today, Judy Neall Epstein, medical director; Compassion and Choices, gives the standard spiel when it comes to these matters:
The tragic legal battle between legendary radio host Casey Kasem's wife and children over his end-of-life care vividly illustrates the inescapable reality that we all need to prepare for our inevitable demise before the crisis stage so our caregivers don't experience this kind of conflict ("Kerri Kasem explains end-of-life decision for dad, Casey").

Unfortunately, completing an advance directive, as Kasem did, isn't enough. You also need to discuss your advance directive with all your immediate family members, and ensure that they all understand and accept your end-of-life wishes that are expressed in it.
In such matters, the family member wanting to continue life support is usually demonized as someone who refuses to accept reality and let death take its inevitable course. Any conflict always results in the same spiel:  Fill out the medical directive and let people know your wishes.  Then there won't be a problem.

If it were only that easy.

Casey Kasem
The fact is people on life support for weeks even months, in in what appears to be an irreversible state, sometimes recover.  Although people believe doctors know whether someone on life support is likely to recover, the fact is they often have no better idea of what will happen than the family and most steer clear of providing odds of the likely outcome.

I learned these facts few hand.  A few months ago, my brother, Jeff (I have four of them) fell off a ledge in a storage area while at work.  He landed awkwardly in the process breaking and puncturing his skull, breaking vertebrae in his neck, nearly ripping off his ear, puncturing a lung, and suffering broken ribs and other injuries.  After being on the floor unconscious and bleeding for an estimated 30 minutes, before he was discovered and rushed to a hospital.

For the next month and a half he remained virtually in a coma like unconsciousness, hooked to virtually every machine.  He couldn't breathe on his own, couldn't eat, couldn't drink, couldn't use the bathroom.  The few times he was conscious he stared out into space appearing not to recognize anyone in the room.  Because of the continued irritation of having tubes down his throat, the doctors ran a tube through his stomach to feed him and cut a trachea in his throat to give him air.  He had numerous lung collapses and bouts of pneumonia.    Doctors were continually calling my brother's wife to see if she wanted them to perform the latest medical procedure necessary to save his life.

After about six weeks of being in the intensive care unit there had been absolutely no progress.  If anything my brother had gotten worse.   My family had a conference call. The discussion touched upon the issue of continuing life support in what appeared to be a hopeless, never-improving situation.  Quality of life was also a consideration.  Even if Jeff recovered we feared with the massive blow to his head he'd be a vegetable with substantial brain damage and paralysis.  The doctors were evasive on discussing Jeff's chances and his long-term prognosis, but it seemed they were signaling that they didn't think he had much of a chance.

Within about 24 hours of that family conference, Jeff did something amazing.  He woke up and began talking, talking a lot.  His brain was functioned well, amazingly sharp after six years of little use.   Within a week of waking up, the numerous medical devices that had kept his vessel of a body alive for a month and a half were unplugged.

As of last week, Jeff has been relocated to a rehabilitation facility.  He eats, drinks, walks, and uses the bathroom on his own.  He uses the phone to call people and accept calls.  He's making such rapid progress that they are soon going to release him so he can go home.  He does not appear to have any brain damage or paralysis.  He appears to be on his way to making a full recovery.

Today marks the one month anniversary of the family conversation where we discussed at what point we should set aside what little hope we had left for Jeff's recovery and consider discontinuing life support.

The bottom line is that when it comes to whether someone who on life support is going to recover, it is not that easy to tell. That's the big issue that people fail to talk about in this end of life debate. In the end, only God knows whether people will on life support will ever recover.  For everyone else it is at best educated guesswork.

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