Palliative Care and the Quality of Life

Catherine is a 27-year-old woman who was waitressing to savemoneyforgraduateschool.Shehadnoinsuranceandwashopingthatherfatigueandnosebleedswereattributabletostressanddryairinhercity apartment. Her roommate found her collapsed on the floor andcalled 911. A complete blood count in the emergency departmentrevealed50,000blastsintheperiphery,andCatherinewasdiagnosedwithleukemia.Symptomsincludedseverebonepain,dyspnea,anxi-ety, and panic attacks associated with isolation. Catherine’s brotherhad a history of substance abuse, and her parents were opposed tousingopioidsforherpain.Housestaffprescribedacetaminophenwithcodeineevery6hoursasneededwithoutbenefit.Catherinewouldcryoutinpainandkeptpushingthecallbellforrelief,butthenursestoldher she must wait until 6 hours were up. The palliative medicineconsult team was called for “help with a manipulative, drug-seekingpatient.”Afterchangesinheropioidregimen,Catherine’ssymptomsandpsychologicaldistressweremarkedlyimproved.Bothsheandherfamilyrequiredextensivecounselingandsupportnotonlyabouttheharmsofuntreatedpainandthesafeuseofopioidsbutalsoabouttheexistential,spiritual,economic,andemotionalconsequencesofCath-erine’s illness. The palliative care team worked side by side with thehematologiststhroughCatherine’sbonemarrowtransplant.Sixyearslater, she had finished graduate school and married. She and herfamily send an annual holiday card and contribution thanking thehospitalfortheexpertscientificandcompassionatecaretheyreceived.Catherine’s story exemplifies the benefits of palliative care andoncology comanagement. The goal of her oncology care was cure,yet her palliative care needs posed significant—but remediable—burdensonthepatient,herfamily,andthemedicalcareteam.Despitethe logic of a simultaneous palliative and disease management ap-proach for patients with cancer, the medical profession persists inthinking about palliative care as being synonymous with end-of-lifecareorasbeingwhatwedowhenthereisnothingmorethatwecando.Medical care is falsely but widely understood to have two mutuallyexclusivegoals:tocurediseaseandprolonglifeortoprovidecomfortcare.Consequently,thedecisiontofocusonthereductionofsufferingistypicallymadeonlyafterlife-prolongingtreatmentbecomesineffec-tive or too burdensome and death is imminent. This problem wasrecognized in February 2011 by important new American Society ofClinical Oncology guidelines