What if it is your parent? Your spouse? Your child?

Imagine supporting a loved one through a journey of serious illness. You go to all the appointments, know all the medications, almost feel the aches and pains as if they were our own. You repeat the same thing over and over again to one doctor after another making sure nothing slips through the cracks. Did somebody write this down? Isn’t this important?

As a clinician, you are busy, overworked. Most days, you don’t have time for lunch. The last thing you want to do is listen to a caregiver who thinks they know better. You’re the expert. Of course. But have you considered how a caregiver can help you? Here’s an example.

My father, who had cancer, experienced kidney failure when doctors in the ICU took him off intravenous hydration. The nephrologist concluded that the cancer was taking his kidneys.

However, my father was also in the middle of a course of Vancomycin, a powerful antibiotic to treat MRSA. Vancomycin clears through the kidneys. Without proper hydration, the patient may experience kidney failure.

Mind the gap

People with chronic illness use at least three physicians, make more doctors’ visits, fill more prescriptions and have more hospitalizations. They go through copious transitions across health care settings and numerous hand-offs between providers. Transitions and hand-offs can create gaps in communication, and these gaps can cause serious breakdowns in care resulting in patient harm.

Also, research suggests that ICUs tend to overtreat critically ill and dying patients. This overtreatment can result in additional complications, longer hospitalizations, patient and family suffering, unnecessary use of resources … and even patient death.

In the ICU, a complex patient’s story is fragmented and distributed across many individuals and technology — more than ever! ICU clinicians and frontline care providers know the current patient status. And the oncologist understands the status of the cancer and adverse effects of treatment. The primary caregiver knows about the patient’s quality of life, recent health history and daily treatments. But who has the full picture?

Between the years 1995 to 2006, breakdowns in communication across and within health care settings were the leading cause of sentinel events as reported by The Joint Commission.

Chronic illness is a cognitive challenge

Chronic illnesses, such as cancer, pose a cognitive challenge to medical diagnostics and decision-making. These illnesses are ill-defined and multi-faceted problems, requiring complex solutions. Ill-defined problems in medical settings are prone to diagnostic errors across the continuum of care.

The longer the continuum of care, the higher the risk of errors.

Incorrect diagnoses can lead to devastating results, especially in the ICU because it is so fast-paced with a lot of time pressure.

Time pressure requires quick diagnostics or decision-making. It involves collecting information about the patient condition and determining a course of action.

And how do you make a quick, but well-founded decision?

Most people formulate a hypothesis and collect information to support it. Cognitive psychologists Kahneman and Tversky called this a decision-making heuristic. It saves time. And it does not burden the physician with the effort associated with seeking additional information. The reason we use heuristics is because most of the time, they work.

And isn’t an informed hypothesis of an expert physician likely to be correct? Not always.

In the case of my father’s incident, the nephrologist was new to the team. The attending physician consulted her when his kidneys failed. The nephrologist selected and collected information: This is how long he has had cancer. This type of cancer at more advanced stages causes kidney failure. He was in the ICU after an aggressive chemo treatment.

Kidney failure seems like a logical diagnosis, right?

My dad faced his first kidney dialysis, an inappropriate and risky action bringing additional complexity to his fragile condition.

But I had this additional information because I had been there the entire time: Cancer had not metastasized and was under control. He was continuing the Vancomycin. Without IV hydration, he was having trouble drinking thickened fluids. His hydration was the only thing that has changed! This was a simple, yet critical detail in a complicated picture.

Armed with this relevant information, I was able to influence my father’s care plan to avoid unnecessary treatment and yield a positive outcome. Within a few days of IV hydration, the “kidney failure” reversed itself.

Caregiver is the common denominator

We have no measures to capture the benefits of clinically relevant information from caregivers in the fast-paced environment of the ICU, where the cost of error is high. But we have a lot of evidence that ICUs are dangerous places for critically ill patients. The World Health Organization identifies the caregiver as key to communication: “The patient and family are the only constant and are thus in a position to play a critical role in ensuring continuity of care.”

We also understand that adult critical care is hesitant to support family presence. Clinicians do have well-founded concerns about interference and disruption.

But who recognizes caregivers as an invaluable source of information on patient care?

Caregivers are present both inside and outside of healthcare settings. They can offer valuable information about the patient‘s history, routines, symptoms and more — not just outside, but inside clinical settings. All are relevant to the clinical picture. This treasure trove of information may be critical to efficient and safe treatment plans in the ICU. This information can make the difference between life and death, literally.

Conclusion

“It is the province of knowledge to speak. And it is the privilege of wisdom to listen.”
– Oliver Wendell Holmes

ICU care happens at breakneck speed.

And when you’re that busy, information slips through the cracks. It happens to everyone. To your colleagues. And to you.

Luckily, most times, it doesn’t matter.

But what about those few times when it does matter?

You can be the catalyst in shifting the medical culture. Let caregivers contribute expert knowledge to the clinical picture. Let caregivers participate in decision making.

You have the power in your ears. You can change lives.

Elizabeth Lerner Papautsky is a psychologist.

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