Reflections On Watching Someone You Love Nearly Die (Part 1 of 2)

crispydoc Uncategorized 2 Comments

My mom and perhaps the one other regular reader of this blog may have noticed I haven’t posted in a few weeks. December was a brutal month – my wife and I spent much of it either out of state in the ICU at the bedside of a critically ill family member or back at home indirectly supporting that family member from afar. I will be forever grateful to my colleagues who swapped shifts last minute to let me be present for my family. Following are a few reflections of this time.
When Someone Is Truly Sick, Being Near An Academic Medical Center Matters
We have been fortunate to have a superb medical team looking after our loved one, and have been impressed both by the quality and excellent communication skills of the physicians and nurses. We both agree it equalled the level of care and expertise we witnessed when we were part of the Harvard Hospitals, with the main difference being an incredibly collegial culture at this institution (something my wife felt was sorely lacking in her 14 years at Harvard; I experienced it to be standoffish, if less toxic, in my 2 years there). We are convinced that our loved one would not have survived at a smaller community hospital that did not provide the level of in-house support and resources available 24/7 at an academic institution.This has implications for the FI community, who frequently tout geoarbitrage as a means of controlling costs in early retirement. Thailand is terrific, but could you survive a major trauma (scooter or car accident) while living there based on available health care? As someone who spent a month working at an International Medical Center in Bali during residency, I can attest that even centers touting their ability to offer “Western equivalent” care fall short of that mark.

One need not live internationally to perceive inequality in the level of care available. Rural communities (I’m talking to you, homesteaders and lovers of the outdoors) often have limited services available. After this experience, I am grateful to live in a place with a choice of several academic medical centers in driving distance.

Are you young and invincible, participating in extreme sports? Consider living near a level one trauma center – the life it saves may be yours.

Think Now About What Constitutes A Meaningful Quality of Life
In the ICU, we have had 7 specialists (hematology, cardiology, nephrology, gastroenterology, cardiothoracic surgery, infectious disease, interventional radiology) involved in the care of our loved one in addition to the primary critical care team. Each advocated an incremental intervention designed to protect or maintain their particular organ system, and each intervention made reasonable sense at the time.

When interventions need to be undertaken in the ICU, decisions are often made under duress as a patient crashes, with little time to second guess whether these interventions result in a cumulative state that is consistent with the patient’s wishes.

Every intervention is billed as a temporary solution, but it all adds up. Dialysis? Artificial nutrition via a feeding tube? A tracheotomy to support prolonged artificial ventilation? One day at the bedside I counted 13 separate intravenous lines converging on our loved one.

Even well-intentioned interventions that begin as temporizing measures have no definite end-points in sight. When can dialysis be stopped? When your loved one’s kidneys start to function again. And if that never happens?

The big question to ask before the emergency is what conditions or invasive procedures would be a hard stop for you. Letting your partner or durable power of attorney for health know in advance what lines you do not want crossed makes it less likely you’ll end up in a state unacceptable to you.

In the ED, I am often confronted with loving family members who are dearly attached to someone near the end of a terminal illness from which she will never recover (for example, a lung cancer patient in respiratory failure) deliberating over whether to do an invasive or potentially painful procedure (intubating and placing her on a ventilator that she will never be able to come off of).

In those difficult moments, where the patient can’t articulate her wishes and the family member feels guilty that her choice to respect the patient’s wishes may result in the patient’s death, I ask them, “If your mom was standing at the foot of this bed looking at herself, what would she want you to do?” This often prompts family to refer back to the patient’s preferences instead of their personal guilt or pain.

This is far less clear when there is a new crisis every 2-3 days in the ICU, and you are awakened from listless sleep by a middle of the night phone call stating that your loved one may die unless an intervention is undertaken emergently.

When a young and healthy person gets critically ill, every effort is routinely made to restore them to function. Good protoplasm stands a better chance at full recovery.

In our case my loved one is over 70, had multiple well-controlled complex medical problems, and undertook a risky surgery in hopes of restoring physical function. The sad irony is that this loved one is currently in a totally dependent state, severely deconditioned. In the best case scenario, it will take months to breathe independent of a ventilator and to rebuild muscles to walk without assistance.

Comments 2

  1. a bridge too far, or perhaps hubris on the part of a surgeon? organs approaching the end of their useful lifespan tend to break when put under extraordinary stress. Even in a risk-adverse setting, we are gamblers, confident in the ability to technology and skill to beat the odds.
    The odds have no skin in the game themselves, they are indifferent to individual outcomes. When we wager against them, however, a predictable rate of failure will occur

    1. Post
      Author

      There’s also a healthy dose of denial in the mix. We see mortality all around us, but it’s human to think of yourself and your loved ones as exempt to the rules that apply to everyone else…until suddenly they aren’t any more. All of us were close to the patient, knew of his comorbidities, and understood that this was high risk. If you were to have recited those facts to me aloud beforehand as if they described another person, I’d immediately get what a long shot this was. Yet being close to him completely skewed my judgment.

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