Health Care Proxies

If you read my first blog, you may notice that my training in law and planning would not necessarily lead to a career in public health. My father, Irving Landers was a podiatrist who practiced in New York City from the 1950s till his death in 1973. My maternal grandfather, Benjamin Rose, was a barber and healer. So, perhaps the health care field was in my blood, despite my academic choices. The other thing that happened was the AIDS epidemic, but that’s not what I want to talk about today.

I want to talk about health care proxies. In part, this is because my partner and I have a dear friend whom I call J. who suffered a massive stroke three weeks ago. It was a hemorrhage that bled in the back of her brain into her cerebellum and onto her brain stem. J. is totally disabled and able to communicate somewhat with eye blinks, for the very short amount of time each day that she is able to be awake.

J.’s health care proxy document directed that life sustaining treatment, also referred to as "heroic measures," not be used to sustain her if there was “no reasonable likelihood of recovery from severe mental or physical disability.” It was also said in the document, that she wanted to die with dignity. The neurosurgeon and neurologists at Mass General agree that J. is likely to remain severely disabled as a result of the stroke damage.

Despite this, her health care proxy took almost three weeks to discontinue life support. It was unclear exactly why the proxy waited this time. Perhaps to wait and watch J.’s progress for a period of time, just in case. She also waited, perhaps, a reasonable time to help family and friends adjust to the shock of what has happened.

It seems to raise a number of issues around health care proxies that I never thought of, even though I’ve had one in place for almost a decade.

Look at different language and be as specific as possible. The language on many proxies is very general and can be interpreted in many different ways. Would you accept ventilators and feeding tubes if there is a chance you could recover in a year? Do you want to be kept alive for a month regardless of circumstances, just to make sure no one pulls the plug too quickly?

Talk to your health care proxy. This is a most critical part of implementing a health care proxy that I’ve never heard discussed. This isn’t surprising as there is a lot taboo and inhibition in our culture about discussing disability and death. It’s just something for which many people can't find the language or setting or emotional strength.

First, we should talk about what exactly we do and don’t want – should we be resuscitated if we are having a heart attack? Would we stay alive with a 20% chance to recover? 5%? 1%? What if we wouldn’t have our full mental facilities? Slightly reduced mental facility? The mental faculty of someone with mild retardation? The mental facility of a five-year old? A ten-year old? One can never cover every situation, but a frank discussion could help provide guidance to the proxy should they ever, heaven help, become your voice.

Second, in the worse case scenario, a health care proxy does need to be prepared to remove a ventilator and feeding tube, if that is your wish. It may seem macabre to ask your dear friend if they would be willing and able to do this for you, but this is what you are potentially asking them to do when they agree to be your proxy. For many people their closest loved one is the right person for this task. For others, it may be someone who is trusted but not necessarily the most beloved person to you in the world.

Having a health care proxy document and asking someone to serve in that role is hard to think about, but something most folks over 40 should have in place. One of my colleagues, when I described the situations with J., said that perhaps there was something to the old way - when doctors, not family members, made these decisions. I don’t think we can or should go back to that time, but I understand the attraction to that idea.