end of life, year after year after year · my experience with als. in: black holes and baby...

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CMAJ • NOVEMBER 24, 2009 • 181(11)© 2009 Canadian Medical Association or its licensors

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End of life, year after year after year

After Fred (as we’ll call him)was diagnosed with an inop-erable tumour the doctors told

him he had perhaps six months to live.A merchant seaman, Fred decided tospend his savings enjoying himselfwhile waiting for the end.

More than eight months later, Fredshowed up at a hospice still dying, butnow broke, having spent his savings onwhat physicians had assured himwould be the last months of his life. Hestayed at the hospice well past thethree-month time limit normally allot-ted residents — he had no place else tobe — but was eventually moved to anapartment with the help of social ser-vices. Fred eventually returned, dyingalmost three years after his six-month,end-of-life diagnosis.

The end-of-life determination setsthe agenda for ethicists and physicianswho counsel patients as they makedecisions based on a presumably fore-shortened longevity.1 Many hospicesshare the same assumptions as thephysicians making terminal diagnoses,limiting client stays to a set number ofweeks.

However, the predictions made byclinicians are at best estimates, thevalidity of which is daily called intoquestion by the Freds who live on pastall expectation. There are many:Famously, for example, cosmologistSteven Hawking was given no morethan a few years to live when, in histhird year at Oxford University, he wasdiagnosed with amotrophic lateral scle-rosis. He lived until 2009, more than 35years after his initial, rapidly terminaldiagnosis.2

The assumption that the date a lifewill end can accurately be predicted hasspawned a robust industry of healtheconomists, medical ethicists, physi-cians and sociologists who set policyguidelines for the last days and weeksof a person’s life.3 What will dying cost

(the patient and thehealth care system);where should thedeath occur (at home,at a hospice, in hospi-tal); and what pallia-tive treatment isappropriate for thedying person, are allexplored in countlessbooks, journal articlesand policy guidelines.

The general rule,informal, but in manyinstances inviolate, isto keep the person ascomfortable as possi-ble and abjure anylife-prolonging treatment. In this wayan end of life determination becomesthe handmaiden and overture foranother category of medical decision-making with real legal currency thesedays, those based on “futility.”4 Futil-ity may be a self-fulfilling promise,however, when aggressive medicalattention is ignored on the assumptionthat the end of life is both assured andimminent, or that a patient’s conditionis without hope of improvement.

As a gerontologist one sees this fre-quently when a senior with chronicconditions is assumed to be at the endand any nonpalliative treatment willonly prolong the dying. Seniors, how-ever, have a habit of confoundingphysician predictions and living on.5

Letting “nature take its course”becomes in such cases an unnaturaljudgment ending the patient’s chancesof future life.

Simply stated, the best clinicalexpectation is often a very bad predic-tor. Medical decisions based on theseexpectations may be bad medicine.That patients live longer thanexpected, sometimes much longer,should be good news. It becomesproblematic, however, when assump-

tions of early death in “end-of-lifedecision-making,” and “futility” ofcontinued treatment are accepted asdeterminations that define patienttreatment. When that happens, thediagnosis may become the cause ofdeath and not a predictor of it.

Tom Koch PhDBioethicistVancouver, BC

REFERENCES1. Blank RH, Merrick JC. End-of-life decision mak-

ing. Cambridge (MA): MIT Press; 2005.2. Hawking S. My experience with ALS. In: Black

holes and baby universes and other essays. NewYork (NY): Bantam Books; 1993. p. 21-7.

3. Field MJ, Cassel CK, editors. Approaching death:improving care at the end-of-life. Washington(DC): National Academy Press; 1997.

4. Wiener RL, Eton D, Gibbons VP, et al. A prelimi-nary analysis of medical futility decisionmaking: lawand professional attitudes. Behav Sci Law1998;16:497-508.

5. Koch T. Mirrored lives: aging children, aging par-ents. Westport (CT): Praeger Books; 1990.

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