Sabtu, 09 Maret 2013

Serving as Healthcare Navigator for my Father


On Friday at noon, I received a call from my father's cardiologist that I should fly to Los Angeles urgently - "your father has had his third heart attack, his heart is pumping at half its usual volume, and the combination of multiple medical problems requires rapid decision making."

20 inches of snow had fallen in Boston on Friday morning, delaying and canceling many flights.

The beginning of Spring break meant that just about every Friday flight was oversold to reveling college students.

I was able to get a Jet Blue flight scheduled for 7pm, delayed to 9pm.  At the airport, I went standby and flew on the 5:30pm, leaving at 7pm.

Once in California, I rented a car and drove to the ICU, arriving at midnight local time, 3am Boston time.   My father's vital signs were stable but there was much to do.

Given everything that happened in 2012 - Kathy's breast cancer, my mother's broken hip, and health issues with my father in law,  I declared a family goal to have all wills, trusts, powers of attorney, healthcare proxies, and an open discussion of care preferences done by the first week of March.   My parents and I worked through  a review of their legal documents, an inventory of their preferences, and an accounting of their assets in mid-February so we were well prepared for Friday's events.

At the moment, I'm in the ICU watching the rise and fall of my father's chest as he breathes on his own after a night on a BPAP machine.    I've taken my mother home to rest.  I'm holding my father's hands whenever he becomes agitated.   He knows I am here but cannot converse.  Today would have been too late to have discussions about his care preferences.

Decisions we've just made are to treat my father per the preferences he wanted - no chest compressions, no intubation, and no pressors.

Difficult discussions our family has had this year included:

Do you want to live at home as long as possible including visiting home care or hospice nurses?

Do you want to be buried or cremated?  A funeral or memorial service?

Where do you want to live after the death of a spouse?

Now that I'm living through the implementation of these decisions, hour by hour, I am so thankful we had the discussions, created the documents, and shared our work with appropriate lawyers, accountants, and family.

As I sit here, his vital signs are stable, his drips have been stopped, and he is comfortable.

I've worked with a remarkable care team - my mother, a hospitalist, an intensivist, a cardiologist, and nurses to implement our jointly developed care plan.

It's hard to know what the days ahead will bring, but I will sit by father's side, following his wishes, ensuring that he knows that his family loves and supports him.   I will ensure he has no pain and no fear.   I will celebrate the gifts he has given me and others.   I'm reading him notes from my wife and daughter.

It's an awkward time to post a blog, but if my journey over the next several days with my father encourages others to prepare for these events (this website is very helpful), my father's life will have made an even greater impact.   Making a difference is a great legacy.


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