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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  • Fred Dempster

    Has today’s medical technology changed the question from “Where does life end?” to determining “Where did life end?”  I have no answers either.

  • Anonymous

    It relieves my heart to know that cases like Eric’s can haunt a physician. From my family’s perspective, the onus of deciding to terminally extubate was ours. When my father passed, the intensivist seemed callous and impatient. Maybe that was her way of coping with her fear/anxiety/uncertainty. Deciding to extubate my mother after her long fight was easier in that the physicians expressed more support and patience. I definitely felt that the doctor was more concerned with my mother’s best interests than his own. He cared about her. It made making an impossibly difficult decision easier for me.

    I can only hope that when I’m a doctor facing these situations, I will be able to care so sensitively for a patient. Kudos to you for articulating and expanding on such an important point.

  • http://www.facebook.com/kmueller40 Kenneth Howard Mueller

    Jim: good post, thanks. Your quote from Francis Peabody should be ” . . . the secret of the care of the patient is in caring for the patient.” At least I think so, it just makes more sense that way. At least that was always my understanding. I can’t find the little book they gave us back in medical school.

  • http://twitter.com/DoctorPullen Edward Pullen

    Good work Dr. Demaine.  Sometimes it takes a lot of courage to do the right thing, and it looks like you clearly did the right thing in this case.  In this situation getting Eric and Gerta on the same page was the task, and patience was key.  Kudos. 

  • Anonymous

    I am really glad that Dr. Jim DeMaine recognizes that care for his quadroplegic patients includes respecting his autonomous decision- making.  Dr. DeMaine recognizes that in situations of medical futility the disabled patient is still the one who has to decide how much he can tolerate the loss of his quality of life.  The article makes clear that assisting a a patient like Eric to end his life is not against principles that govern medical ethics.  The attribution that competent disabled adults have the right to refuse treatment as in the case of Eric’s physical therapy, even though it might lead to hastening his death, is a constitutional right as decided in Bouvia v. Supreme Court of California.  Dr. DeMaine also recognizes that a competent disabled person is not a dependent, helpless body, but as a physician he can express his respect for his disabled patient by letting him decide about his end of life which is a human right of disabled competent individuals. 

  • barcabela

    Nobody has an obligation to do extraordinary things to keep or to be kept alive: that´s an objective and sound ethical rule. That´s  totally different from intentionally killing someone (and this is objective and sound too)

  • Martin Adickman

    Two thoughts that I believe will help:
    1)  Learn to distinguish between prolonging life, and prolonging death- and just what do these mean to our patients?2)  A physician’s responsibility is to relieve suffering- primarily for the patient, but for the family as wellOnce you can internalize these thoughts, it will help to ameliorate the conflict perceived- but we really have to listen carefully to our patients, and to read between the lines sometimes

    Some think this takes courage- but courage implies struggle against something- these decisions are easier, not harder, and can leave you at peace

    Marty

  • Anonymous

    Of course it should be the patient’s decision.  I watched my father keep my mother alive on life support for a week after she was brain dead, because he couldn’t get beyond his own needs.  Later, I found out that she had asked my aunt to hand her pills that would have ended her misery, but my aunt refused.  My mother and I were never close, but I would like to think that if she had asked me, I would have found a way to help her die.  We have no control over how we get here.  But after living our lives, however long that may be, we’ve earned the right to decide how we want to go.

  • Anonymous

    Yes, you did the right thing.  Erik was more than ready to go.  How sad it would have been for him to remain trapped here.  Greta will mourn him and hopefully someday see that allowing Erik to go was the greatest love she could have shown him.  I hope if the time ever comes for me to decide to stay or go that I have a doctor as compassionate as you.

  • http://ThroughLifeAndDeath.com Shahina Lakhani

    This is a touching story.The compassion shown by you and the rest of the team is remarkable. As an advocate for right to Peaceful and comfortable end of life transition, I believe it is healthcare providers’ responsibility to care for the patient and help their loved ones so the final moments are memorable and peaceful. Their is no way for a third person to determine what is the best choice, this decision lies with the patient if they can advocate for themselves and with the loved ones in the cases when the patient is unable to communicate. Our job is to truly listen and help through the decision making process as well as provide support after the decision has been made. Shahina Lakhani