Engage With Grace

Currently my step-father is in an ICU with a feeding tube and ventilator. He's comatose and my mother and his doctors are unsure why. I know that my mother and he have talked about his healthcare, and that she understands his wishes for care. She has his healthcare power of attorney.

My mother-in-law seven states away is also in a hospital room, recovering from a serious infection. She's in her 90's. Her five children and their family members are all engaged in her healthcare and know her desires. She has a living will enabling her children make decisions on her behalf should she become unable to. They've posted a sign in her room that tells the nurses and physicians to discuss her blood test results (a daily occurence because of long-term ongoing chemotherapy) with family members who are present.

My best friend's mother is dying. She is also in a serious situation, and the family has decided to withdraw life-support. They too are engaged and able to make decisions where they need to.

In all three of these cases, the family is completely engaged in the process, and knows the wishes of their loved ones. They started talking long ago.

Have you had discussions with your family members about how you would like to be treated? There's a simple way to start. Engage With Grace is a project designed to help you have this discussion. They provide one slide with five questions on it that you can discuss with your family members. You can download a copy of this resource here.

I hope you will look at it. I know that I'll be having this discussion with my family today in the car as we head off for the holidays to see my mother.

Firehoses

I've spent the last week alternately sucking from, and spraying a firehose. I hope I gave as good as I got. Here was my itinerary for the week:

Monday

• Fly in
• Dinner with the organizers of the trip

Tuesday

• 2 hours on internal calls
• 2 hours meeting with the IT Director at Primary Children's Hospital
• 1 hour presenting the HL7 CDA and CCD to a Seminar of about 60 Informatics students and Staff at the University of Utah
• 3 hours meeting with a smaller student group working on various Public Health projects in the department

Wednesday

• 2 hours meeting with Informaticists at IHC
• 1 hours meeting various people from GE Healthcare
• 2 hours on a HITSP call taken in a cab, hotel room, and walking to my next meeting
• 1 hour meeting with a project team connecting researchers to the data available from Intermountain Healthcare, the University Health System, and the VA
• 1 hour getting an overview of a cool desktop devices that uses PCR to simultaneously identify multiple pathogens in about an hour, and actually understanding what it was doing! Thank you Scott, Molly and Kevin. Without your help this summer I would have been totally lost.

Thursday

• 2 hours on rounds at Intermountain Healthcare's new hospital
• 1 hour speaking on Standards Adoption
• 2 hours discussing clinical decision support, terminology and modelling with others from GE Healthcare
• Dinner with Stan Huff

Friday

• 3.5 hours meeting with a group of Informaticists at the VA
• Then I fly home.

My days started at 6:30 in the morning, and ended, well, just look at the time of this post. Salt Lake City is beautiful, and the mountains are covered in fresh snow that arrived Wednesday. While I wish I could have spent the weekend skiing, I haven't seen my family in a week, nor talked to my children (they have a schedule almost like mine this week, prepping for their appearance in a musical review in two weeks, and the time difference means that I constantly miss them when I call home).

I've been learning a great deal about public health and research this week, and been in the company of some extremely bright and educated people. I've also made a lot of new connections and spent time with a number of people that I don't usually see except at standards meetings. It's very interesting to see how these same folk take their standards expertise back into their day jobs.

I spent a good deal of time thinking about why standards are as hard as they are, and I'll share that in a subsequent post.

I'd like to thank Grant Wood of Intermountain Healthcare, Dr. Julio Facelli of the University of Utah, and Peter Haug of Intermountain Healthcare for making this trip possible. In addition, I'd like to thank Stan Huff, Joe Hales, Kathryn Kuttler, Susan Matney, Catherine Staes and Brett South, all of whom I found to be excellent hosts.

Not Huxley, but Shakespeare

I woke up this morning, and the world had seemingly changed overnight. I look forward to a great deal of that change, especially the investments in Healthcare IT that have been described elsewhere by the Obama campaign (see Presidential Politics and Healthcare IT).

I also look forward to change occuring over the next year inside HITSP. My sense is that much of that change will come from inside rather than be imposed from outside, but the uncertainty in the change of administration makes me mildly anxious. I am somewhat heartened this morning by John Halamka's thoughts on what may occur (see Healthcare IT in the Early Obama Administration).

The US National program is one of the most brilliant things I think the Bush administration has executed in the last eight years, and coming from me, that's a concession.

• HITSP has hundreds of organizational members, from a variety of perspectives, and a significant number volunteers contributing to the development of a realizable and rational health information network.
• The NHIN's have made significant progress in the development of the backbone for our health information.
• CCHIT has contributed greatly to improve the capabilities of healthcare IT.

These programs need to continue. They all need fine tuning, but I'd hate to see any one of them go through a great upheavals. My advice to President-elect Obama, his coming administration, and the new Congress with respect to the activities of these organizations would be the following:

1. Continue to support the work of the Office on the National Coordinator.
2. See what HITSP, CCHIT and NHIN are doing before initiating any great changes.
3. Engage with Healthcare IT leaders from those organizations before doing so.

When you compare the investment our National program to what nations elsewhere sped, it is a paltry sum. But the return on that investment is already huge. For every $1 ONC has committed to spending (some not even spent yet) on healthcare IT initiatives, states and regional initiatives have multiplied it nearly ten-fold.

The next year promises to be very interesting indeed. As Miranda said:

O, wonder! How many goodly creatures are there here!
How beauteous mankind is! O brave new world, that has such people in't!
-- Sheakspeare, The Tempest, Act V, Scene 1