Tuesday, May 21, 2013

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.


MightyCaseyMedia said...

Dr. Halamka, your experience mirrors the one I had with my own dad. I used a mental checklist, not a scorecard, but wound up in the same place. Took all my cognitive skills, too.

It would have been *hugely* helpful to have a dashboard to use, particularly since there were three siblings involved in the decision-making, although I held the trump card as the medical PoA designee.

Sharon Wentz, RN said...

I share your experience of navigating from the personal and professional side. I love the idea of dashboards, as they help patients and families in a visual way. It is very difficult to "hear" when one is in the midst of a healthcare crisis. My work in the ICU and as a daughter navigating ill parents would have been helped by having access to this sort of tool. Of course it is only a tool, and would need to be used as part of the communication and engagement process. There is a lot of emotion in critical care settings, using this sort of tool would need to be done in a caring and compassionate way as to not appear offensive or too data driven. I look forward to seeing your new project unfold.

Unknown said...


Thanks for this post and for this initiative. As someone who recently lost a parent following an unexpected illness and very brief hospital stay during which we went through a similar decision process that you describe, the dashboard concept is a great one.

The ability to distill the variety of incredibly complex information down into something that highly emotional family members can understand and make decisions on is not a skill that everyone has. Developing a tool to help with this process will be a welcome addition to many families struggling to make the 'right' decision.

Thanks for your good work.

Medical Quack said...

Brilliant...just lost my mother less than a month ago and had the hospice decision to make as well. A visual would certainly stand to help all understand and see all sides. I too had others in the family involved in this decision and anything that can be done to make the decision process easier is certainly worth the time and effort.

My mother also had the do not revive wish as well and ended up dying from one of the worst cases of breast cancer that the surgeon had ever seen. I was out state and again at a distance, Mom went to some degrees to hide some of this as well, which I was told is also very common until it gets to the point to where things can no longer be hidden and thus the severity of her cancer was her secret if you will. She was 88 and had lived a full life and we all respected her decision though to live out the time she had left with quality of life versus chemo therapy or other treatment which would have probably ended her life sooner as well.

I think this is a great idea to be done with the focus of helping the family or friends at such times. I know too well how difficult the hospice decision can be.

The Shellie said...


Pat Rullo-Speak Up and Stay Alive RadiOh! said...

No one is harmed by having too much information - but too little? That's another story. This is exciting news. I'm a fan of BIDMC.

Catherine Rose said...

I agree - decision tools are powerful and can help non-medical caregivers balance information overload. As well, it would give a place to discuss futures for nurses, doctors patients and family. I had created a dashboard for my daughter to share the conversation in case I wasn't there to speak for her. RED = urgent items, YELLOW = things that are good to know, GREEN = her baseline (how she normally looks). I also had enough space to include all of her surgeries. http://caringcalm.blogspot.com/2011/03/create-calm-for-chaotic-times-quick.html

Mattpenning said...

I look forward to having some tools such as this available for my son when my time approaches. I am grateful to you and your team.

Anonymous said...

I agree that this is helpful, and necessary in ICUs, but I think this should also be used in regular inpatient settings where the patient has many failing health labs/issues but is being treated for a relatively minor condition. My mother was declining at home, and we knew she had severe stenosis-but she started to decline mentally gradually but then very rapidly. She was admitted and diagnosed as having a UTI but she actually was suffering from severe heart issues as well as vascular dementia. She was discharged five days later, and continued to decline at home, and died six weeks later-suffering greatly because we didn't and she didn't know what was happening. I found all this out afterwards by reviewing her hospital medical records. Hospitals need to tell family member everything that their sick family member's records show- we should have known that her labs showed her to be in total declining cardiac health instead we were told , she has a UTI, and that is what is causing her mental issues. She had all the tests, CT scans to know that she was suffering from more than just a UTI and no physician ever told us our mother had these various other issues-but they just had a resident explain that the UTI was to blame for her mental condition. Communication is paramount in medicine, physicians have to realize that families/caregivers really need to know exactly what their loved one's labs, scans, etc... show regardless of what they are being specifically treated for. I also as a caregiver for my elderly parents have always felt that there should be a way that a designated family member, could somehow be able include a status/medical history paragraph within their loved one's medical record (hospital) on a daily basis while they are inpatients- the information we have as family caregivers is invaluable and many times it falls on deaf ears - whereas if somehow it could be included on daily basis within the hospital record it would be valued and truly helpful.