Life Lessons in Palliative Care Download PDF Robert M. Arnold, M.D.
The Palliator's Diaries
"The next activity we will do in today's session is called the fantasy death exercise." I look at the expectant faces in front of me. I always get a kick out of doing this exercise with medical students as it is a great immersion learning tool and fun to do.
"The fantasy death exercise is sort of like guided imagery experience. Please close your eyes and keep them closed until I tell you to open them again." I look at the eager faces around me now calm in repose, eyes faithfully closed.
"Let's fast forward into the future. Imagine that you have lived a great life and accomplished everything you ever wanted to do both professionally and personally. You are at peace with yourself and with the world . . ." I continue and as if on cue gentle smiles of satisfaction appear on all the faces. I pause for a moment to let them savor their success.
"But all good things must come to an end," my solemn voice carefully sets the stage for the next phase of the exercise even as I absorb the smiling introspection on their faces. "It is now your turn to die." My bald statement wipes off the calm smiles on all their faces in one fell swoop.
"The good news is you get to completely orchestrate your death." Their smiles do not reappear.
"I will give you another minute to ponder. Now, I want you to imagine your fantasy death. Where would you like to die. . . . and how? What are you feeling? What is your fondest hope for yourself as you die. . . . ?"
So what is your favorite death fantasy? Do you see yourself tubed, PICCed, lined, wired, and lying in a $5000 dollars a day intensive care unit (ICU) glass cage (for room and board only) with your privacy gone with the wind? Maybe you see yourself lying in a health facility and being turned around every few hours like a rotisserie chicken to prevent decubiti? Or perhaps you are at home with a loved one soothing your fevered brow and a hospice nurse fine tuning your morphine dose?
Sailing in Acapulco . . . skiing in the Alps . . . rafting in the Amazon . . . watching the sunset in the Himalayas . . . these are some of the heartbreakingly naïve death fantasies learners have shared with me. The stark reality is that once you have received your terminal diagnosis, your horizon closes in, your privacy does a Houdini on you and will likely be tethered down by physical, emotional and monetary concerns. Terminal illness like is a ruthless parole officer who enforces zoning restrictions and you typically have to think three times before traveling to the next county, let alone the triple diamond slopes on the Alps.
When it is your time, and in event you plan to operationalize your death fantasy by traveling to the Amazon or the Himalayas, be aware that you may be just a tad outside the range of the Medicare Hospice Benefit. Also, the comfort care you will receive is very much a function of the indigenous services available in that geographic area.
According to the World Health Organization, a country's total annual morphine consumption is an important proxy for the pain relief available to patients in that country.
A review of the International Narcotics Control Board's report reveals that the availability and consumption of opioids continues to remain extremely low in many countries worldwide. In 20041, 32 countries in the African continent consumed virtually no opioids despite the millions dying in pain.
The stark reality is that once you have received your terminal diagnosis, your horizon closes in, your privacy does a Houdini on you and will likely be tethered down by physical, emotional and monetary concerns.
The United States is the largest consumer of opioids accounting for 54% of global consumption of fentanyl, 51% of global consumption of hydromorphone, and 88% of global consumption of oxycodone in 2002. Despite this, we admittedly do a very poor job of palliating pain and other distressing symptoms in dying Americans.
Paraphrasing poet Thomas Newman, the night is long and we are far from home. Right now we have two choices. When our time comes, we can tattoo a "do not resuscitate" sign on our chests, tweak our fantasy death scenarios to include nursing homes and assisted living facilities and stay close to home. Or we can take control of our futures, join forces with beacons of hope and optimism like Drs. Ferris,2 Foley,3 and Stjernsward2,3 who are toiling hard in the global garden to make the soil more fertile for palliative care. The choice is yours to make. Which one is it going to be?
1. (www.incb.org/pdf/e/press/2004/press_release_2004-03- 03_6.pdf). (Last accessed March 20, 2008).
2. Ferris F: Dog with a bone. J Palliat Med 2008;11:696-699.
3. Foley KM: Building the field of cancer pain. J Palliat Med 2008;11:176-179.
About the Authors
VYJEYANTHI S. PERIYAKOIL, M.D.
Stanford University School of Medicine, Stanford, California.
VA Palo Alto Health Care System,
Palo Alto, California.
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V.S. Periyakoil, M.D.
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Palo Alto, CA 94304