Note to My Health Care Proxy

I read Advanced Dementia in a recent issue of The New England Journal of Medicine. Lots of data from many patients about this inevitably progressive, memory-robbing, life-ending condition, mostly in the form of Alzheimer's Disease but also in less common forms. It now afflicts 5 million persons in the US, a number expected to increase to 14 million by 2050. We can't predict when dementia will end a life. That depends on when and which complications come, most commonly as eating problems and infections, especially pneumonia. Medications are costly and ineffective.

Treatment decisions for patients...should be guided by the goals of care; providers [new name for doctors and nurses] and patients' health care proxies [persons you entrust to speak for you after you no longer can] must share in the decision making. After the provider has explained the clinical issue to the health care proxy...the proxy should then articulate the goal or level of care that aligns with the patient's preferences, such as treatments that promote comfort only....

If I ever should suffer the misfortune of this condition, my goal of care will indeed be comfort, even before my Alzheimer's becomes advanced. We talk about the "healing" power of music but maybe should talk instead about its "comforting" power. After all, music can temporarily restore a Parkinsonian patient's ability to walk (to the beat) or speak (by singing) or help Alzheimer patients access memories (like a "can opener" according to music therapist Gretta Sculthorpe), but it can't heal a wound or restore failed kidney function.

In Musicophilia Oliver Sacks remarks,

...music therapy in people with dementia...seeks to address the emotions, cognitive powers, thoughts, and memories, the surviving "self"...and to enlarge...existence....  

Music has no side effects like tranquilizers that calm at the expense of blunting further any remaining trace of self and sensibility.

Despite evidence that musical taste deteriorates as dementia progresses -- suspect dementia if you start to prefer pop music -- I don't think I'll be comforted by Somewhere over the rainbow, or by singing my high school "fight song." My proxy had better play Leon Fleisher's recording of Brahms' arrangement of Bach's Chaconne--or equivalent--through my headphones as I recline with a chilled glass of L'effet papillon. (from MooreBrothers.com)