By David Gushee
Follow David: @dpgushee
In a spring in my life filled with illness, dying and death, here are a few hard lessons I have learned. To borrow from novelist Ernest Gaines, let’s call them “lessons before dying.” Perhaps these thoughts will be especially relevant to Christian medical professionals, and to chaplains, pastors and others whose ministry takes them to the hospital bedside.
A hospital is a terrible place to be if you are not feeling well. Stay away from hospitals as long as possible.
I deeply respect health care and its professionals. But I really wonder about whether the hospitalizations my aged, ill loved ones have recently experienced did them any good at all. We have experienced the hospital as the place where legions of medical professionals test, poke, prod and examine our loved ones, and then treat one or another aspect of the ill human body in ways that often have little positive effect. Hospitals are where patients (or family) recount their conditions endless times to an endless cycle of strangers. Where blood is drawn and IV’s are inserted in aged veins, bruising tender, fragile skin. Where rest, conversation and family time are interrupted by constant visits of often dubious medical value. Where physical therapy is attempted on those who don’t really want it or will benefit little from it. Where privacy for the family conversations that matter most is almost impossible. (“Semi-private room” — the ultimate oxymoron.) And where medical interventions create side effects that lead to other medical interventions that then create complications leading to other medical interventions…and so on.
Medical specialization often leaves the sick without holistic care.
When persons become patients, especially in a hospital, they often are treated as a bundle of symptoms or ailments, each handled by a different specialist. Every patient in a hospital who has multiple ailments needs to be treated by a care team led by some kind of medical quarterback. This person would be aware of the patient’s condition as a whole and would coordinate the care offered, in consultation with the family. But instead, families are confronted by a bewildering array of specialists not working in coordination with each other or under any central vision of care. No one examines the cumulative effect of all the disparate interventions attempted by the array of specialists on the case.
Patient autonomy is fragile indeed. Its fragility is worsened by inadequate communication of medical information. Every family needs a medical ombudsman.
Everyone who has ever studied bioethics knows that patient autonomy is a bedrock principle. The patient, supposedly, has the final say in health care decision making, and has the right to refuse unwanted treatment or to object to treatment decisions. But patient autonomy at minimum requires mental lucidity and the capacity to understand both condition and treatment options. Mental lucidity is at constant risk, especially with aged and very sick patients, given the disorienting impact of grave illness, pain medication, and hospitalization itself. And most readers can surely testify to occasions when health care professionals simply could not adequately explain either illness or treatment options to patients or families. Every patient or family needs a doctor, nurse, or other medical person in it (or a friend willing to serve) to help navigate these treacherous currents. Every patient needs a medical ombudsman.
Every human life is lived under sentence of death. We are all terminal cases.
When we are young, it is often possible to deny the fact of death for a good long while. But when we reach a certain age, such denial is no longer possible. We must face death, and adjust how we both live and die accordingly. The Christian faith has certain very compelling things to say about our terminal mortal condition. When we and our loved ones move near death we all find out the extent to which the teachings and resources of the faith prove real and helpful.
The medicalization of dying and death must be resisted in view of what really matters.
In our fallen world, even in the best case it is true that after four score years or so people get sick and eventually die. The most important work that needs to be done when the dying process sets in is not medical treatment of every particular symptom, but readying both the dying and the family for the mysterious and awe-full transition that is about to occur. We all need to remember that “patients” are actually persons-before-God, persons embedded in grieving families. Finding peace with God, finding closure in reflection on the long journey of life, finding healing in family and other relationships, saying a proper thank you and goodbye — all this is much more important than yet another test to determine the full extent of renal failure (or whatever). We distract ourselves, “busying ourselves with many things,” missing the “one thing needful” (Luke 10:41-42) when we and our loved ones face death. Thus the medicalization of death must be blocked by a resistant humanization-before-God. We need to preserve space to be, and to love, dying persons in the process of returning to God.
