Tuesday, June 5, 2012

Hope in Hospice

It has been 6 weeks since my Mom passed away, and I continue to reflect as I continue my own work in end of life care. We continue in American health care to leave patients and families difficult choices between transitions that are calm and compassionate, and those that are infused with aggressive futile care and "fighting for someone." The "fighting for" mantra - "I will fight for you" (and make your body and life a virtual battleground rather than a place of calm approaching a natural event) cdrtainly makes sense in those cases where a reasonable possibility of success (not even to say "cure") might occur ......

And so I want to relate two cases i have seen in the past month ..... these cases are in fact not so "rare" - we see about 100 new cases on our symptom management unit, some just for stabilization and symptom management, but many with death felt by highly trained and experienced hospitalists to be inevitable .....and about one case in every hundred really surprises us ...... so that with each family who asks me "how long" I always add the proviso that I believe there is a "higher power" who often makes fools of doctors, and that, our Hospice unit is the one place in the Hospital where doctors can "hope to be wrong."

A patient came to see me recently who was not responsive in any way suffering from a glioblastoma multiforme, an aggressive brain tumor. He was also suffering the ravages of aggressive chemo and radiation therapy .....and he was thought to be "imminent." We made as we often do some minor medication adjustments - in our unit we never really try to shorten or lengthen life, simply to seek "palliation" - this might include readjusting anti-convulsant medications and other sedatives and slightly increasing medication that can temporarily reduce the edema surrounding the cancer (and the brain irritation from the "battle" fought by the chemo and radiation agents....) ....... this patient slowly woke up ...... we dared to try to feed him and he ate ...... and when safe we got him up in a chair....... and he ended up leaving our Hospice unit - a place some say is a place to die, for a Skilled Nursing Facility.

To be sure he isn't "cured" whatever extra time he has is likely short. We make no claims of cure ..... only that we used what limited  conventional skills we had to stabilize medications and turned a "battle for his life" into a place of calm where he had the opportunity to live.

A few days ago another patient came in for a taper of levofed, a "pressor" agent. This is a medication that ICU's tend to use to stabilize blood pressure when it is too low and there is a sense of desperation. The patients family entered into vigil and the medication was tapered away ..... and indeed the blood pressure was very very low..... some would say "incompatible with life" but the patient was awake and comfortable and talking with the family.

Again ..... no cure ..... nothing magic ..... no huge claims ..... simply exchanging a sense of crisis and running around in circles with a place of calm, a place to live the time one has - and sometimes - for reasons we do not understand .....with calm and serenity and support human beings sometimes live longer than we doctors can imagine possible.

I am acutely aware that this journey is more difficult as a son than as a doctor ....and having been through it in a personal way, it never will be quite the same for me as a professional. I do know in some ways what families are going through (though - each personal journey is different and unique).

If I were to offer one reflection it is that giving up on futile aggressive medical intervention that is obviously not working, does not mean giving up on "hope" ........and that on an evidence basis we do not know what lies beyond death. It seems that most Americans believe in some spirit beyond the physical form, some studies suggest 90-95% and it would seem odd that absent any "evidence based" way of testing that "science" would think it could claim "hope" to be its domain, or to deny the deeply felt beliefs of most people.

It might seem - that absent the ability to prove or disprove a "hypothesis," evidence based practitioners might   not undercut "hope" that emanates from simple human faith, and assist in doing what we can to provide calm and compassion, where sometimes for reasons that astound us "miracles seem to happen."

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