What Does It Feel Like To Tell Someone How Long They Have Left To Live?

What Does It Feel Like To Tell Someone How Long They Have Left To Live?
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By Andrew Young Shin, Pediatric Cardiologist

It doesn't change my focus or delivery of care.

This may be hard to understand.

When there is no medical or surgical therapy that can affect the untimeliness of death, many healthcare providers feel failure. Young doctors are angry and bitter. Older and seasoned doctors are accepting and nurturing, even apologetic. But there is a shared sentiment that we - the system, the current technology, the team, the individual - have in some way or some part failed the patient.

We have done everything we can. There is nothing more we can do.

These are statements I've heard so many times as a medical trainee used to bring closure to the medical care. So many times, I've heard these used as an end to a metaphorical contract between the physician and patient. One professor even told me, it's time to walk away.

This is not true.

Several years ago, I was involved in one of the worst tragedies of my life. During my call as a pediatric intensivist, I received a call that there was a 9 month old coming in code 4 by ambulance in full cardiac arrest. I was unknowing at the time that this baby would challenge and shape how I view my role as a physician.

One hour before, this baby was healthy sitting in a carseat in the back seat of the minivan. Thriving well with a loving mother and an older 8 year old sister. They were on an errand on a routine Saturday sunny day. They briefly stopped at a neighbor's house. Thinking that the visit only entailed of dropping off a package on the front doorstep, the mother left the engine running and the two children in the backseat. The front door opened and the mom was engaged in a brief conversation. The sibling, excited to see her neighbor, unbuckled her seat belt, and climbed out from the backseat through the driver's door. Whatever the extraordinary odds or tragic twist of fate, her shoe kicked the car into gear. She fell out of the moving van. The van continued to proceed into an embankment with the mother running and screaming after it. The van slowly dipped headfirst into the murky reservoir. The following is cataloged clearly:

  • 911 rescuers arrived at the scene within 5 minutes.
  • 6 firemen dived into the reservoir to save the submersed 9 month old still buckled in. The water was dark and visibility was restricted.
  • More than 10 dives without success.
  • Approximately thirty minutes later, the baby was freed and brought to the surface. Lifeless and pale.
  • 8 minutes of on-scene CPR. No pulse.
  • 10 minutes of CPR en route to the emergency room. No pulse.
  • 5 additional minutes of CPR in the emergency room with return of spontaneous circulation. Stabilization of vital signs and transfer to the pediatric intensive care unit.

This is how I met patient "Anna."

Our team descended upon her with quiet teamwork that comes from years of working together. She was poorly perfused and hypothermic. As we fervently tried to place a venous catheter, I looked up at her monitor and found once again she was in cardiac arrest. We re-initiated CPR again - her lifeless body bouncing as her sternum was compressed to squeeze the heart to pump and circulate the blood that otherwise was at a standstill.

Global hypoxic ischemic encephalopathy. This was one of several findings within the brain CT scan once she was stabilized on life support. Her brain was starved of oxygen for so long that most, if not all, of her brain cells were damaged. Nothing was spared. I remember looking at the images and thinking this child will never be the same person as before - she will never smile the same way or have the same personality as before. Her body was saved. Anna was lost.

We were faced with the task to inform her parents that there was nothing we could do to bring her back. In addition to her brain injury, she had multiple organ system failures. Her water-logged lungs were showing signs of inflammation. Her kidneys were shutting down. Her liver was extensively damaged. Her days were measured in minutes to hours.

Before approaching her family, I remember gathering her bedside nurse and my colleagues and students in a huddle. We all knew in our hearts the inevitable was about to happen ... that Anna was about to die. It was in that moment - looking at the defeated faces of my team that we reviewed what our role as healthcare providers during times like this should be. And it was not to walk away. We reviewed that our job as healthcare providers remains unchanged: to improve health where it can be improved upon in order to positively impact quality of life. To manage disease when there is no cure. To treat pain when comfort and mental health is compromised by disease or injury.

It's often the extreme cases that moral clarity comes to light. Our job is not finished when a patient has succumbed to disease or trauma. For Anna, we doubled our efforts to ensure that she was as comfortable as possible. We removed the painful catheters and tubes that would not provide her the bridge to recovery. We monitored carefully for any signs of discomfort and treated any possible pain, much like an anesthesiologist monitoring a sedated patient on the OR table. We determined through her family that the last minutes of her life would best be spent in her mother's arms. In the end, despite the horrific tragedy of the situation, her family expressed the same goal: We don't want her to be in any pain. When she passed, we did not feel like we failed. We felt like we did our job as an advocate to one in desperate need.

For Anna and for every other patient in similar situations thereafter, my role as a healthcare provider is to continue to be the strong advocate for the patient....especially when medical therapy has faltered and life is foreseeably foreshortened. Whether it's a child with relapsing leukemia, a young adult with a malignant pancreatic cancer, or an elder with aspiration pneumonia ... when hope for a long life is lost, hope for the best life is unchanged.

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