Friday, November 23, 2012

Wisdom from patients

Every day on the Hospice unit we seem to learn from our patients. Just before Thanksgiving we were talking with a patient who came to us for pain symptom management related to the cancer she was suffering from. Her oncologist had pretty much told her to get ready to die ..... but without curing her we had gotten her pain and shortness of breath under control, and were talking about sending her home - possibly Thanksgiving at home and encouraging her to pray for Christmas at home - no guarantees - but we were optimistic. She smiled and said, "every day above ground is a good day."

We were all touched by her smile and her positive spirit!! And i started to look for similar quotations - it turns out a movie used the same quote my patient had used, and there were many other versions.

"Badger" Bob Johnson, a famous hockey coach, suffering from brain cancer lifted his team reminding them "today is a great day for hockey."

And the fictional character Worf, in Star Trek Next Generation before a battle was frequently reminding all who would listen "perhaps today is a good day to die."

But my recollections date back to philosophy courses when i was reading a book by Carlos Casteneda, he was learning Native American wisdom from don Juan Matus, and was taught that a "warrior" has a certain way of living such that, "if one quickly looks back over the left shoulder, then it is possible to catch a glimpse of death."

Whether it is from conventional religion where we learn of "heaven," or from don Juan who seemed to perceive a mystical world from which spirit guided signs could lead to a different perception of reality, to agnostics who don't "know for sure" but want to be connected to the spirit of others in the world they live in ..... there is a common focus not on the decline trajectory leading to death but a focus on the moment, that the time we have is a time to live a part of life, a focus not on how we die but how we live the time we have.

Science and conventional medicine often seem to speed everything up - the clock is "ticking," when what we need most is to "slow everything down." Einstein said that time was "relative," and indeed for patients much depends on how they perceive it .....

This past week we had another patient come in for pain management. She had tumors spread to her jaw and simple eating had become a painful chore. We were working on just making her comfortable - but guess what? - she did not want us to change her medication, she wanted us to talk with her and listen to how she felt about things. Two days later we had not made any changes in her medication - she had refused my medication suggestions - and she felt MUCH better ...... what did she say?  We "were so nice to her" we "cared about her" and for her it made "all the difference in the world." She was ready to go back home and face some of the time she had, knowing that if she needed to she could come back to our unit, and we "would respect her wishes."

Our unit has had quite a few visitors lately - we always enjoy other professionals coming to share experiences with us. Many have been on other hospice units, and consistently what they are saying they notice about our unit is "the sense of calm." Our unit has a lot of ICU "step down" so we really are not a "low acuity" unit - quite the opposite, but one consequence of offering Reiki on our unit was not simply the impact on patients but the impact on us ...... and how we approached each day. We started to refer to death as "transition" and started to think about what we do as helping people to live, rather than helping them to die. We started to focus on how they could find "golden moments" rather than how hard it was for us to watch their "suffering." (we also unless a patient wanted it very much banned loud TV shows from our unit and focused on calmer sounds).

And so we seek not a "good day to die," but whether today can be simply a good day to live.

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