Patient and Family Engagement in ICUs

My father died 2 months ago and now with a bit of distance from that emotional event, it's time to further reflect on technology to support patients and families in ICUs.

BIDMC has been speaking with a major foundation about creating a cross-disciplinary, multi-institutional, open source application to turn critical care data into wisdom for patients and families.

How might it work?  Let me use my father as an example.

My father had multiple sclerosis for 23 years, myelodysplastic syndrome for 2 years, and 3 myocardial infarctions since 2009.

When I arrived at his ICU bedside in early March, I spoke with all his clinicians to create a mental dashboard of his progress.   It looked something like this

Cardiac - history of 2 previous myocardial infarctions treated with 5 stents.   New myocardial infarction resulting in apical hypokinesis and an ejection fraction of 25%.   No further stent placement possible, maximal medical therapy already given.  

Pulmonary - New congestive heart failure post recent myocardial infarction treated with diuretics, nitroglycerine drip, afterload reduction, upright position, and maximal oxygenation via bilevel positive airway pressure.  O2 saturation in the 90s and falling despite maximal therapy (other than intubation)

Hematologic - failing bone marrow resulting in a white count of 1, a platelet count of 30, and a hematocrit of 20

Neurologic - significant increase in muscle spasticity, resulting in constant agitation.   Pain medication requirements escalating.  Consciousness fading.

Renal - Creatinine rising

Although I did not have realtime access to his records, I gathered enough data from my conversations to turn this dashboard into a scorecard green, yellow and red indicators.

Cardiac - Red due to irreversible low ejection fraction

Pulmonary - Red due to the combination of falling O2 saturation despite aggressive therapy

Hematologic - Red due to lack of treatment options available for myelodysplastic syndrome and an inability to transfuse given the low ejection fraction and congestive heart failure

Neurologic - Yellow due to the potential for successful symptom control with pain medications

Renal - Yellow due to treatment options available for renal failure

My father had expressed his wishes in a durable power of attorney for healthcare - do not intubate, do not resuscitate, no pressors,  no feeding tubes, and no heroic measures.

From the combination of the dashboard, scorecard, and his end of life wishes, it was clear that hospice was the best course of action.

I'm a physician with 20 years of practice experience.   I'm a CIO with 30 years of data analysis experience.   I'm a decision maker with 35 years leading teams.

Making the hospice decision required all of my skills.

Ideally, patients and families should have the tools  needed to make such decisions regardless of their medical sophistication.

Our proposed project is an automated ICU dashboard/scorecard for patients and families updated in realtime based on data aggegrated from the medical record and patient connected telemetry.    The architecture will be a decision support web service , Hospitals send data in and the web service returns the wisdom of a graphical display.

The project is ambitious and will bring together patients, providers, and IT experts.    We look forward to the challenge of creating a patient and family friendly dashboard for ICUs.    My healthcare navigator service to my father would have been empowered with such a resource.