One of the hardest sides of medicine is when it turns to pallative care turns to dying. Dying is not something to which most doctors take kindly. In fact, most of us go into the profession to thwart death and misery. So, approaching the topic is very difficult for everyone, but a recent experience I had with the dying of one of my most special patients raised a very large issue that is hardly ever discussed, but which tears at the souls of everyone in a family. The forms for Living Wills and Powers of Attorney for Health Care are ones that most patients are left with on their own to flounder. Sure, a hospital will likely hand you a folder or a form and have you fill it out, if you do not already have one, but what you are signing; and what you are asking member(s) of your family to undertake on your behalf is huge. These decisions need to be entered into with a lot of forethought and discussion with the very ones who will be potentially taking charge of your health care decisions should you become incapacitated. The decisions are intensely personal, tremendously spiritual, and steeped heavily in one's moral and ethical values. The decisions, when they are called upon to be made, are likely going to have to be made under some of the most intense hospital conditions and time crunches human beings will ever endure. Furthermore, given that hospitals and the majority of hospital doctors and staffs are intense-duty bound to war with death like desperate troops battling hand-to-hand for the last foothold of a strategic island, THEIR pressure to make THEIR decisions quickly will often involve a lobby, the likes of which Congress has never known.
We tend to think of a Living Will in a skip-ahead way. I mean by that, we tend to look at Living Wills as though we are already at the end point and have been there for weeks or months with tubes and machines. It's fairly easy for us to put ourselves in this end scene and make decisions based on that image. What is not realized is that nobody goes instantly from calmly talking to one another in one moment to intubated for a month in the next. In between will be the "slippery slope." Further, making choices to remove "life-saving tools" is vastly different from not starting them in the first place. Both eventualities should be thought through.
The first question to come to grips with is: how DO you feel about dying? It has always struck me as a bit bizarre that Christians, who proclaim the resurrection and eternal life, can also be the ones MOST intensely attached to "life at all costs." What constitutes a life? Is the relatively simple act of breathing and heart beating what life is? Or, does life involve more, like consciousness, interaction, movement, vocation....? If all life has is breathing, then preserving that includes a particular set of steps on that pathway. If life involves lots more than that another course is required.
The next question is what constitutes "playing God," or put in a non-religious vernacular, what constitutes murder? Is murder withholding "life giving or sustaining possibilities"? Is murder withdrawing "life sustaining techniques" that are not actually making progress in saving that life?
Armed with answers to those two very hard questions, you are then ready to tackle the same conversation with those you would choose to be making those decisions for you. Do they understand your perspective? Can they abide by your understandings and beliefs?
The trouble typically starts when 911 is called to an emergency or when you are checking into a hospital with some significant health problem. Those moments are like entering the starting blocks of a Grand Slalom ski downhill. You will potentially find yourself being swept down the slope. "Standards of care" issued by all-knowing medical teams will dictate the twists and turns. Each significant junction they will need to collect an "informed consent" either from you or the one to which you have given power of attorney. That signature either keeps the race going, or stops it in it's tracks. WHERE in "the race" do you want the towel thrown, where or when do you want it to stop? The time to make the decision to sign will be very short and the hospital staff are typically super-charged ready to go to the next part of the race. Putting the brakes on and saying "No," at any point is going to take tremendous resolve not only to stand up to the hospital staff, but to know the decision is very possibly one that could cost your life.
I'm hoping that if you've read this far you now have had the experience of a light bulb going off in your head. Any one of us is a street intersection away, or a heart attack away, from landing in the ER. Do you even want to cross the threshold of the hospital door? Who do you have to make your decisions for you? What decisions do you want made? Having the conversation before hand will undoubtedly aid the process should it take place at some point for you. Put your choices in writing! It's an intense, scary, and tremendously painful time. Having had the conversations before events ever happen won't take the intensity or the fears away, but it will help everyone feel a little more sure that you received the dignity you desired at that awful moment in your life.