The secret in caring for the patient is to care for the patient

Erik’s wife had warned him many times, “Stay off ladders dear, leave it to someone younger.” Erik though was a pretty spry 72 years old and had been cleaning the gutters for many years. He had a sturdy 25 foot extension ladder, had years of experience as an athlete, and wasn’t about to slow down for no good reason.

It was an unusually bright crisp November day in Seattle, when Erik laid the ladder against the house. He knew that there were both maple and oak leaves in the gutters and that it shouldn’t be hard to clean them out. After securing the footing of the ladder and donning rubber gloves he set about tossing the matted leaves toward a yard recycling bin two stories below.

That’s about the last thing he remembered other than the crushing chest pain like a mighty force squeezing the life from him. After that it was a daze. He struggled with the restraints, felt like he must pull the tube from his throat, and vaguely recalled Kafka’s “Metamorphosis.” He was Gregor Samsa awakening as a giant inset trapped lying on his back, struggling with his new existence. Was this real?

Erik’s wife, Gerta, had found him unconscious at the foot of the ladder barely breathing. The Medics arrived within two minutes, found Erik to be in ventricular fibrillation and applied CPR, then shocked the heart back into normal rhythm. Circulation returned and Erik’s color “pinked up.” The medics though were aware of the fall, strapped him safely to a gurney, and rushed him to the trauma center.

Erik woke feeling no pain. In fact he couldn’t feel anything. He tried to move his arms and legs, but nothing happened. He saw he Gerta crying at the bedside. All this added to both confusion and anxiety. He still couldn’t believe his metamorphosis into a helpless being and wanted to get some answers.

The MRI scan showed that in the fall he had severed his cervical spine at the C1 level. It was explained to him that he was quadriplegic and would likely need to stay on a breathing machine indefinitely. This explanation was gentle at first with some hope attached with a “wait and see” attitude. There was no brain damage because CPR was begun successfully within a few minutes and the heart restarted without delay. It was the fall. Gerta was right, “Why didn’t I listen?”

The transition from the ICU to rehabilitation care was gradual. A tracheotomy was done and an intensive program started to get Erik as mobile as possible. Gerta and Erik had been highly successful entrepreneurs in high tech and knew not only how to get things done, but also had the resources to get the best.

A specially equipped wheel chair had a battery powered ventilator to support Erik’s breathing. A specially designed breathing tube allowed him to talk in a stutter step way, but it was a big step toward some communication and independence. The electric wheelchair could be controlled by Erik’s puffs of air so he became mobile. Gerta had the house remodeled so he could navigate throughout the main floor, out the door, onto a ramp, and go down by the swimming pool (now barricaded)and back. Gerta was expending a huge amount of energy. She wanted Erik to be alive and as happy as possible.

Erik mechanically went though the rehabilitation and body care with some wonderment but progressive discouragement. He hated the daily body massages to prevent sores, tone his muscles, and to try to get his bowels to move. He required a urinary catheter and periodic enemas to handle bodily functions. This was all somewhat tolerable until he began to have recurrent pneumonia. Each time this happened, he would be struggling to breathe and required suctioning from his trachea since he couldn’t cough effectively. The first year there were five trips to the ER, two requiring a hospital stay.

In the second year, Erik was having worsening pneumonia with more difficult bacteria and was struggling both physically and emotionally. He let me know that he wanted to talk. Gerta was there when Erik clearly said, “I don’t think it’s worth it.”

Gerta, shocked, said “Erik, you can’t mean that. There’s so much more that can be done and I can’t think of living without you.”

Erik backed off, but got me alone one time later. “Look doctor, enough’s enough. This isn’t living. Do I have to go on this way?”

I asked, “Erik are you down? Are you depressed?”

With more than a touch of scorn, “Wouldn’t you be?”

I did have my favorite very practical psychiatrist friend see Erik for assessment. He found that Erik was not clinically depressed and was thinking clearly. He wasn’t suicidal per se, but just saw no future in going on.

I asked Erik why he might not want to go on. He said, “First, I’m no longer functioning as a man. I have no chance of recovering. I’m worsening and am a burden to my wife. I’m serious, I should have the right to decide when enough’s enough.”

Gerta was distraught to hear all of this and pushed Erik to go on. In the third year following the accident, Erik had another severe bout of pneumonia and was in the ICU. We met with Gerta who was struggling, “I just don’t want to lose him. He means everything to me.”

The social worker spent hours supporting Gerta. Somehow slowly she was able to find the strength to support Erik, “He’s been suffering so much and it’s so hard to see him that way and to try to make him go on.”

At the bedside in the ICU, Erik made it very clear, “I’m ready to meet my maker and finally be a peace.”

With further conferencing with Gerta, the social worker, and the ICU nurses we sedated Erik with small doses and removed the ventilator. He died peacefully with Gerta at the bedside.

Comment: A case like Erik’s continues to haunt me. Did I do the right thing? Didn’t people like Steven Hawking live on ventilators? Didn’t Christopher Reeves (Superman) struggle more than Erik before succumbing to a similar injury? Being a doctor at the bedside can thrust almost god-like powers in decision making. What’s best? Is there a clear right or wrong? My own take is that there isn’t a truly right or wrong answer. I felt my obligation was to support the patient’s wishes and at times that means not continuing the artificial means of life support. There’s a well known quote in medicine from Dr. Francis Peabody: “The secret in caring for the patient is to care for the patient.”

Jim deMaine is a pulmonary physician who blogs at End of Life – thoughts from an MD.

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