When hope is fuel for suffering

I work full-time in a busy intensive care unit in California. I feel privileged to practice medicine in the ICU, where the sickest of the sick are offered a chance to improve and recover. Sadly, a significant number do not get better. The ICU remains the location where roughly 25% of Americans spend the last moments of their lives.

A crucial part of my job as an ICU doctor is not only to restore my patient's health but also to hold their family’s proverbial hand through the ups and downs of the ICU rollercoaster. I’ve always done my best to offer clear communications and compassionate deliveries of sensitive information — especially when the outlook is not optimistic. The exchanges with the family usually occur at the bedside, though sometimes we touch base with them on the phone.

Real serious conversations, however, occur almost always in person, in particular, in a dedicated conference room where we can accommodate many family members simultaneously. “The conference room” becomes a code for bad news breaking. Once, I interacted with a family who was unfortunate enough to have many of these difficult conversations in the conference room. Their loved one was so ill and the hospital course was plagued with complications. They knew the conference room well.

“No! Not the little room! You are about to tell us something terrible,” one of the family members looked visibly distraught when I reminded them of our upcoming meeting.

Despite the protest, we met in that small room as scheduled and had the talk. The bad news was delivered. Tears were shed and hearts were broken.

These hard talks are emotionally rough for everyone involved. One thing I’ve learned from almost two decades of ICU practice is, these difficult conversations have a common theme — the clinical reality does not line up with the hopes and expectations.

Medical practitioners constantly assess clinical reality as the patient’s ICU course evolves. The assessment comes from evidence-based medicine, the practitioner’s expertise and past experiences in similar cases, the clinical trajectory, and the patient’s reserve and ability to self-heal. But even with our best effort to be accurate, there’s always uncertainty. Uncertainty in medicine is what distinguishes expectations from hopes. Expectations focus on specific outcomes in the future and are easily subject to disappointment. Hopes, on the other hand, honor uncertainty and imply faith in the process — the optimistic belief that a good outcome remains possible.

Even so, hope can be the precursor of endless suffering.

Everyone hopes to get better and leave the hospital. Healthcare professionals work hard to align clinical reality with that hope. We have many in our armamentarium — pharmaceuticals, life support machines, medical technologies, research data, and multi-disciplinary teamwork. But what happens when we run out of tools, or the tools fail to bridge the clinical reality and the outcome the patient or the family hope for?

That is when hope becomes the precursor of endless suffering. To keep hoping for something that never arrives leaves us stuck in misery and prevents us from moving forward. There’s grace and serenity in acceptance and there’s dignity in letting go. The sooner we set ourselves free of what is no longer true, the sooner we can reach a place of peace.

Traditional wisdom says hope keeps us afloat. My work has taught me that true wisdom is to recognize when hope is deadweight disguised as a life jacket.

Metta and much care to you all.