The last time I cried reading a book, the imagery and exposition from Barbara Kingsolver’s The Lacuna gave birth to those tears. This time the intricate weave of fact, emotion, and the intimate details of the death of Katy Butler’s father and her mother’s journey as a caretaker hit me with such force I wept.
Knocking on Heaven’s Door resonated with both my professional and personal soul. As a nurse celebrating my fortieth year of bedside practice, I doubted a “non-medical” person could show me much I hadn’t already seen. But when Ms. Butler shared her poignant memory of the tender touch rendered by the technician who shaved her father, she affirmed my practice of shaving men daily. From that point in the book, I knew she understood my point of view as a seasoned practitioner.
Today nursing students get out of school having never shaved a patient. I have written stories about the intimacy of this daily ritual and have had readers comment that they twisted their faces to accommodate my blade as they read my description of men responding to the comfort of this simple ablution. This minor deficiency in nursing student experience is symbolic of the health care behemoth in which technology increases exponentially, while the ethics of human dignity founder.
Thanks to scientific advancements, medicine has the capacity to do more and more and more. When I started my first job in critical care, there were no arterial lines, no pulmonary artery catheters, and no one knew to use positive end expiratory pressure on a ventilator. Today these technologies are commonplace. Just like children today grow up with computer technology, I grew as a nurse and embraced change every year I practiced. I don’t know when I shifted from a young upstart, hungry to understand and implement every new thing, to someone who remembered the calling of my profession. In my quest for knowledge and expertise, I placed the people in my care second on my list of priorities. Ms. Butler provided me with the insight to why and how this happened. She illustrated how this approach to health care devours a family. And she created an impetus for rethinking the goals and practice of health care delivery.
After her father’s first stroke, Ms. Butler and her mother embarked on a difficult, tumultuous course to provide the best care for him. It seemed after every decision, another challenge requiring another decision appeared. For every step forward, her father took two steps back. In the process, Ms. Butler’s fiercely independent mother, a loving wife, experienced a loss of life of her own. In an effort to keep Mr. Butler home and maximize his recovery, Mrs. Butler subsumed her needs. An act of love, no doubt. But the decisions posed a threat to her physical and emotional survival.
Ms. Butler’s description of the last years of her father’s life can be summed up succinctly. Survival doesn’t mean recovery. She raises the question that is “the elephant in the room” in any family discussion about health care decisions. For every individual the answer is different. Just as someone made choices about how he lived, should he not direct how he dies?
The availability and cost of advanced medical technology act to complicate the factors in the decision making process. Ms. Butler describes the irony of Medicare’s willingness to pay for a costly pacemaker while denying the cost of a “truss” to help provide comfort to her father until he could be cleared for a bilateral inguinal hernia repair.
How did our culture get to a place where modern “lifesaving” allows a person to know “the suffering of life without its joys, and the helplessness of death without its peace”?
The diminished value attributed to the family practitioner is a starting point. I remember Dr. Barrow, our family doctor. He treated my anemia when my blood count dropped so low I fainted after a penicillin shot. He addressed my teen-aged depression. He made house calls. He knew my family and the context of our lives. With the advent of multiple specialists and an ever-changing reimbursement structure, family practitioners are pressed for time if their offices are to survive. Reimbursement is driven by time, not talking, treatment, not affirmation of the individual as a bio-psycho-social being where three spheres interact to define what health is for that person.
The next problem, simply put, is our passion for technology leaves little room for compassion and planning. In the urgency to fix a problem, an intervention is chosen and implemented with no time for assess the far reaching effects of one procedure. The team members where I work rarely get to see patients on their way home. The question of how a family will function after a patient is discharged hardly is a consideration when recovering a patient from open heart surgery or inducing hypothermia after a cardiac arrest. Real time crises diminish the truly fundamental issue of what will happen after discharge. Anticipation and planning for this must begin the day of admission.
Every hospital uses social workers who manage an amazing portfolio of resources. Care must be planned around the family as a unit, not just the patient as an individual. Family harmony versus dysfunction. Children who are retired to care for their parents versus those who still work. Parents who demand their independence versus those incapable of demanding anything. There is no fool proof recipe to cover all situations. Successful transition of a patient from the hospital to the community is a tabula rasa, a work of art attempting to recreate life after a health crisis.
For many, differentiating between life and living raises the ultimate conundrum. Is living being warehoused and immobile in bed, in a nursing home. As a person with multiple sclerosis, I have spent many lonely, waking hours trying to find the answer. Believing I have it, I have an Advance Directive. For me living means reading, writing, working out, and talking politics, thanking patients for letting me share in the journeys of their lives, waking in my bed, next to the familiar curves and aroma of my husband. Living is not just a heartbeat or a respiration.
Every day I go to work, I confront the problems and issues in Knocking on Heaven’s Door. Because I am a nurse, I am biased, but not jaded, when I espouse my solutions. The power, truth, and insight of Ms. Butler’s book make it must reading for health care professionals, anyone with a frail parent or sick relative, and anyone critical of our current health care system. But reader beware: there will be tears.