This past week, health care journalist Charles Ornstein wrote a compelling piece for the Washington Post detailing his personal experience with heart-wrenching end-of-life medical decisions. Ornstein’s story of his mother’s death highlights the complexity of this little-discussed topic, and should serve as a wakeup call to every American family: End-of-life issues should not be avoided or delayed until the last possible moment. They should be carefully considered and clearly communicated. Even then, as Ornstein discovered, these decisions are never easy or simple.
Americans have always been uncomfortable with the topic of death. We are a youth-obsessed culture, and spend billions each year on products and services designed to slow, stop, or even turn back the clock on aging. On one hand this is understandable. As human beings, we shrink from death because we are beings created for eternity. God created us to rejoice forever in communion with Him, but because of our pride and disobedience, we are separated from our Maker. When we fell, death entered the world, and there’s no escaping it. You can hardly blame Americans or anyone else from doing all they can to postpone the inevitable. On the other hand, we too often allow our fear of death to result in a kind of denial. We think if we never talk about death, somehow things will just sort of work out when the time comes. We don’t realize that our failure to consider our end-of-life wishes results in unimaginable stress and sorrow for those we love most.
Advance care directives got a bad rap during the Obamacare debates because of a fundamental disagreement over who should be guiding end-of-life care. Proponents of limited government believe that patients in concert with their doctors and families should be allowed to guide the process based on their individual circumstances, while advocates of a universal approach tend to favor standard guidelines and protocols crafted by committee. Apologists would call this “best practices.” Critics like myself call it “cookbook medicine.” Regardless of what side of the ideological fence you might fall on, however, there can be no denying the wisdom of being prepared.
No matter what your age or condition, you should think carefully about what you would want done in the event of a terminal illness or mortal injury and make your wishes known. This can be done via an advance directive (with the help of a resource like the Five Wishes program, for example) or through a trusted surrogate who understands your thinking on the subject and who has your best interests at heart. It is important, further, that you keep your advance directive up to date. If your domestic circumstances have changed – if you have become estranged, separated or divorced – make sure you update who will make decisions on your behalf in the event you are incapable of making them for yourself.
Of course, despite the most vigilant preparations, one can’t predict every scenario. Charles Ornstein and his siblings knew that their mother would not want extraordinary or futile measures taken to prolong her life, but this knowledge made it no easier to know exactly what to do when the time came. The question, then, is whether families should be allowed the time necessary to come to their own conclusions, or whether a panel of government “experts” should be the ones to decide. The fact is, doctors are often way off the mark when they try to predict odds for recovery or death. For all we know about the workings of the human body, there remains a vast and mysterious lot that we do not understand. When an ill person has a will to recover and knows they are surrounded by love and support, their prognosis is improved. This has been proven time and again. Simply because we don’t understand how this works is no reason to discount it.
Unfortunately, as we become more “civilized” we are more and more likely to do just that. Countries like the U.K. consign the fate of their ailing and elderly to the dictates of protocols like the Liverpool Care Pathway. In essence, such approaches assign a monetary value to human life. When a patient’s condition indicates that the cost of care will not yield sufficient dividends in terms of healthcare outcomes, the patient is placed “on the pathway.” Often this involves the withdrawal of food and water, in which case a patient must experience the agony of starvation and dehydration before succumbing to their fatal ailment. In some cases, the pathway kills them before their disease does. Comparative effectiveness “experts” might call this best practices. I call it inhumane and unethical. This one-size-fits-all approach is not health care, it is murder.
Health care is about so much more than dollars and cents. In the end, we are talking about human life and the dignity accorded it by our society. If we believe, as our Declaration of Independence asserts, that all men possess inherent dignity as given to them by God, then we cannot embrace a system of health care that assigns life worth based on arbitrary criteria like age, size, location, cognitive ability or any other generic factor. If there’s anything that we as individuals can do to assure that this doesn’t happen when our time arrives, we should do it and do it now.