donotresuscitate-icahnschoolofmedicine.pdf

Do NOT ResuscitateAwell-orchestratedplanfordeathendsonabrutalnote.by Dav i d Muller Like many health care providers, I’ ve spent time contemplating the circumstances of my own death. Where will I be when I die? Who will be present? What will the doctors be doing—or will there even be any doctors in the room? Themoreinvolvedwearewiththedying,themorethesekindsofthoughtstend topushintoourconsciousness.I’ veseenpeopledieinallsortsofplacesandunder wildly different circumstances, so I can’ t help but wonder whether there isn’ t a better way to plan ahead. Some of the most memorable experiences from my internal medicine training were mishaps that occurred around what I thought would be a well-orchestrated death.Inoneinstance,apatientwithadvancedAIDSwasadmitted,comatoseand hopelesslyill.Wespentthenighthelpingthefamilycometotermswithhisimmi- nent death. They signed a do not resuscitate (DNR) order, only to have an attend- ing physician talk them out of it the next morning because he wasn’ t convinced that they were the appropriate surrogates. Another patient, elderly and frail, was dying at home. During the course of several months, she made her wishes known: noheroicmeasures,noartificiallifesupport,nohospitalizationunderanycircum- stances. Yet as soon as she slipped into a coma, her son—who hadn’ t been actively involved in any aspect of her care—called an ambulance and had her hospitalized. She died several agonizing weeks later in the hospital intensive care unit.Orchestrating Death These days, i’m an internist in manhattan and work in Mount Si- nai’ s Visiting Doctors Program, which provides primary care for home- bound people. Our patients are generally elderly and infirm, and a good number of them are in the late stages of long-standing illnesses. Many are termi- nally ill and express the desire to die at home. Our program works closely with home nursing agencies, home hospice ser- vices, and a wide array of community-based agencies to create a network of sup- port that allows our patients to remain with their families in familiar surround-N a r r a t i v eM a t t e r sH E A LT H A F FA I RS ~ Vol um e 24, Num be r 51 31 7DOI 10.1377/hlthaff.24.5.1317 ©2005 Project HOPE–The People-to-People Health Foundation, Inc.DavidMuller(david.muller@mssm.edu)isanassociateprofessoranddeanformedicaleducationattheMount SinaiSchoolofMedicineinNewYork,NewYork,whereheworksinMountSinai’ sVisitingDoctorsProgram.The nameofthepatientinthestoryhasbeenchanged.ings to the very end. Tomymind,thisiswhatpatient-centeredcareisallabout.Intheirownhomes, our patients and their families feel comfortable taking matters of life and death into their own hands. If it suits their needs, and it usually does, we will do what- ever is necessary to keep them away from the emergency room and out of the hos- pital. Foradoctor,ahomevisitliesoutsidethehecticpaceoftraditionalhospitaland clinic settings; it provides a chance to go beyond the thumbnail sketch and curb- side consult that rarely do patients justice. Communication—and the high- quality care that results—takes time because questions have to be answered, details spelled out, reassurances given, and the whole lot re- peated until everyone agrees and understands. More than two-thirds of our patients are able to die at home. This is in sharp contrast to the national figure oftwo-thirds ofpatients dy- ing in hospitals or skilled nursing facilities (of- ten despite their wishes to die at home). We think that our statistic is even more impressive considering how much effort and coordination it takes to get everyone on the same page. Everyone has to come to terms with death intellectually, emotionally, and spiritually. And everyone has to knowwhattodowhenthepatientdies:Callthedoctor,callhospice,orcallthefu- neral home, but don’ t call 911.Mrs. Santos’ s Story When i first met mrs. santos in her home—infact, every timeI ever saw her—she was sweating and had a rapid heart rate. I soon came to understand that despite the smile this small, lively woman al- wayswore,shewasinexcruciatingpain.Duringanearlierhospitalstay,ourmedi- cal center’ s palliative care staff was amazed at the doses of morphine-based pain killers needed to keep her symptoms at bay. Once Mrs. Santos’ s pain seemed con- trolled and the care plan was clarified with her and her family, she was sent home to be cared for by hospice nurses and those of us in the Visiting Doctors Program. Mrs. Santos was living just blocks from our hospital, in the projects of Spanish Harlem. Everything about these buildings is intimidating: their hulking size, the desolate look of the lobby, the smell in the elevator. Even the long, narrow hall- ways, although they aren’ t longer or narrower than other hallways, can seem men- acing to the uninitiated. Thetwo-bedroomapartmentwascleanbutcluttered,withaseeminglyendless stream of people, faces, voices. It was active, even animated—very much alive. On one occasion, late in Mrs. Santos’ s care, I entered the living ro。