Do you remember having that talk with your parents, that uncomfortable talk about our shared biology? Have you had that awkward talk with your own child, that halting communication that acknowledges a coming of age? You know that talk, the one that renders normally articulate adults into fountains of washed-out euphemisms when what is called for is plain talk about the way it is.
Think you know where I’m heading? That talk is not what we normally think of when we hear “the birds and the bees.” And yet, “birds do it; bees do it.” That talk I have in mind is that hard talk about our common biological destiny: we will all die, all of us, each and every one. We will all travel what dying David dubbed “the way of all the earth” (1 Kings 2:2).
Though we all know this reality, we too seldom appreciate what it means for us and our bodies. Let’s be honest: thinking about my death and how my body will one day fail me is almost unimaginable. However painful it is to envision the loss of a loved one, it is easier to think how I would try to go on rather than to picture family around my deathbed. In our imaginations, we are the survivors; others, the corpses.
My and your own deaths are more than the unthinkable. Too often they are the unspeakable. We are all-to-willing collaborators in this conspiracy of silence, as if not speaking of death and dying would bar the door to the angel of death. In America, serious death talk is the last taboo. Too few of us give voice to what care we do and do not want at the end of our lives.
Yet the more we talk about what we want, the more likely our wishes will be understood and respected by those asked for input when we cannot speak for ourselves. If you desire to appoint a healthcare agent (also known as a durable power of attorney for healthcare or healthcare proxy), you should first talk with that person. Is your relative or friend willing and courageous enough to serve as your voice? If so, your next task is to educate your future advocate, so that she or he can reflect your values and interests.
If you write an advanced care plan to guide your future treatment, your healthcare agent should keep an original of that document in an easily accessible location. A safety deposit box in a vault will likely not be accessible on nights or weekends, when guidance from your advance care plan might be needed. But talking to your chosen healthcare agent and putting your wishes in writing is just a first step.
The Terri Schiavo case illustrates the need to communicate end-of-life preferences with one’s wider family, because members may disagree bitterly over your intentions. Most of us would hope that our dying would draw our families together for mutual support, rather than drive a wedge between them.
To speak openly of our last wishes is to leave a profound gift for our loved ones. These can feel the crushing weight of being charged to choose life or death for us. This is true even in cases where the power of life is not in a machine, devise or drug. Karen Ann Quinlin “survived” over 10 years after her ventilator was removed, yet when her parents petitioned the court to allow her to die naturally they felt this awful weight. We can lift loved ones’ burden by communicating that we have done the hard work of deciding what care is consistent with our own values. We can lighten their burden by clarifying that their proper task is not to second guess what we would want, but to respect the choices we have made.
In addition, you should discuss your wishes with your primary care physician (PCP), who should retain a copy of your advanced directives. Your PCP will likely play a part in coordinating your future care and communicating your preferences.
Now that death is far removed from the everyday lives of most Americans, physicians and nurses have greater knowledge of this unfamiliar territory we dub the dying process. That said many doctors tend to underestimate the burdens medical interventions place on patients. In addition, too few possess the courage to say plainly, “This intervention is no longer helpful and should be continued.” Far more seem to think, “If we have it, we should use the technology.” Nurses are more frequent witnesses to patients’ ordeals and are thus more likely to ask, “Why are we doing this to the patient?”
If you have an attorney, he or she should also keep a copy of your advance directives. Many attorneys offer assistance in drafting these documents; and they are often familiar with the legal requirements for such in your state. (For example, some states require documents to be notarized and/or witnessed by two persons with certain qualifications–someone not entitled to a share of the patient’s estate or no employee of the hospital.) However, most estate planners know considerably more about tax law than about the inner workings of an ICU or actively dying patients’ burdens. You may find discussing your end-of-life concerns with a congregational nurse more helpful.
Some believers will find comfort in discussing their wishes with their pastor. Some congregations now offer to maintain copies of members’ advance directives in the church office. Often the pastor (or another church staff member) is among the first called to the hospital or to the nursing home when the patient’s condition changes dramatically. Family often feel lost under these stresses, and may not remember clearly what you said about where you keep your important papers or what you shared about care preferences at end-of-life. Provision of a copy of the member’s advanced directive can be a valuable ministry.
Let’s talk about how we want to live our last days.
Christopher Church is professor of philosophy and religion at the Baptist College of Health Sciences in Memphis, Tenn., chair of the clinical ethics committee at St. Jude Children’s Research Hospital, and chairman of the board of the Mid-South Center for Biomedical Ethics, a regional coalition of hospital ethics committee members and others interested in clinical ethics.
