Determining Decision-Making Capacity: Challenging in Cognitively Impaired Elderly Cancer Patients

December 1, 2003

This special supplement to Oncology News International presents 17 reports fromthe first annual Geriatric Oncology Consortium (GOC) multidisciplinary conference,‘‘Advancing Cancer Care in the Elderly.’’ Reports focus on issues in geriatric oncology,in particular team-based patient assessment and care delivery,adherence to medication, accrual to clinical trials, appropriate dosingthrough supportive therapy, radiation therapy, cognition problems, pain management,reassessment of outcomes, and caregiving issues.

ROCHESTER, New York-Although assessing the decision-makingcapacity of cognitively impairedelderly cancer patients can be challenging,following established guidelinescan provide the clinician withknowledge needed to form a morefirm opinion, according to Daniel AriMendelson, MD."Determination of decision-makingcapacity is the ultimate responsibilityof the attending physician," saidDr. Mendelson, assistant professor ofmedicine at University of RochesterMedical Center, Rochester, NY. "Physiciansneed to be comfortable withthat determination."Case StudyTo illustrate the intricacies of makingthis determination, Dr. Mendelsonpresented the case of an 82-yearoldwoman with Alzheimer's disease(indicated by a score of 14 out of 30 onthe Mini-Mental Status Exam). Thewoman presented to the emergencydepartment with pain in the right hipand groin. A pelvis radiograph revealeda lytic lesion and ramus fracture, and occult blood was found in the stool.The woman refused further workup,much to the chagrin of her daughter,an oncology nurse who demandedfurther tests. The patient, however,stated that she had "lived long enough"and was an "old lady" who wanted tobe left alone.The law upholds the right of thewoman to refuse treatment, Dr. Men-delson said, but determining the patient'scapacity to refuse is a matter leftup to the expert medical opinion ofthe medical provider.A patient may have decision-makingcapacity if it can be demonstratedthat she has a specific understandingof the situation (ie, does she understandshe may have cancer, that furtherworkup is medically indicated,and that her decision may carry increasedrisk), along with a consistencyof reaction to the situation (ie, an hourlater, when presented with the sameinformation again, does she make thesame decisions despite the cognitivedeficit).The patient does not need to demonstrateexhaustive knowledge to establishthat the there is an understandingof the medical condition. "If thepatient can repeat back to me in herown words that she has something inher pelvis that's not good, that's goodenough," Dr. Mendelson said. "That'sa reasonable understanding of hermedical condition."Consistency with the way a particularpatient made decisions years earlier,before onset of dementia, couldalso be useful in making a determinationof decision-making capacity. "Youcan put their medical care into contextof their life story," Dr. Mendelsonexplained.Decision-making capacity is specificto each situation. For example,the patient may clearly have the capacityto make a simple decision, such assaying she would like to assign herdaughter to make medical decisionsfor her. A do not resuscitate (DNR)order is fairly straightforward as well,according to Dr. Mendelson.Consent Form ComplexitiesHowever, going through a 25-pageinformed consent form may be toocomplex for a patient with compromisedmental status."Patients can only give informedconsent if they have the decision-makingcapacity for that particular instance,"Dr. Mendelson said. "For thisexample, yes, I think she does...Doesshe have the ability to consent to acomplex medical procedure? I'm notso sure about that-I would have totalk more with her."The inclusion of cognitively impairedindividuals in clinical trials,according to the American GeriatricsSociety, should hinge in part on theissue of decision-making capacity.Specifically, decision-making capacityshould be determined for each potentialparticipant and each researchprotocol. Additionally, trials that donot have a reasonable chance of directlybenefiting the participantsshould not be offered unless the individualretains decision-making capacityor has given advance consent.Dr. Mendelson called for a "reasonablestandard" in informed consentprocesses developed by institutionalreview boards (IRBs)."I see IRBs coming out with longerand longer consent processes," he said."It doesn't meet the reasonable standard.The reasonable standard is thatwe are effectively communicatingwithin the reasonable realm of possibility.It doesn't mean patients have tohave a PDR (Physician's Desk Reference)listing of side effects on everypossible drug we are going to givethem...we, in fact, dishonor our patientsby not using a reasonable standard."Clear communication is essential,Dr. Mendelson said, given that "patientsdrop out or won't participate ina trial because they get befuddled bythese complex things that are well beyonda reasonable standard." Referringto himself, he added, "I'm notsure I can sign a 25-page consent andbe sure what I'm signing."