When Do We Stop Talking About Curative Care?

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<ul><li><p>JOURNAL OF PALLIATIVE MEDICINEVolume 6, Number 4, 2003 Education Development Center, Inc.</p><p>When Do We Stop Talking About Curative Care?</p><p>TIMOTHY GILLIGAN, M.D.</p><p>657</p><p>TRUTH AND HONESTY ARE DELICATE ISSUES in theworld of cancer care. What cancer patientsand their loved ones should be told and how theyshould be told it remains a challenging issue foranyone caring for them. While it is easy to con-demn lying and to embrace honesty, brutal dec-larations of the truth can be damaging, and basedon what my patients tell me, are not uncommon.In the abstract, it is easy to assert that all patientshave a right to know to details of their conditionand their prognosisand surely they dobut itbecomes more complicated when the patient doesnot want to know, or if the patient is ambivalent.Denial and hope can be key elements of a pa-tients strategy for maximizing psychologicalquality of life in the face of a devastating diag-nosis. Building honest relationships and givingpatients the information they want or need whilerespecting their limits and their need for hoperepresents a challenge confronted by everyonewho works with these individuals. However, alltoo often, the prioritization of hope or the per-ceived psychological frailty of cancer patients be-come excuses to withhold fundamental informa-tion that patients need in order to make plans fortheir care and for their future. As an oncologist,first in training and now in practice, I have beenvery interested in the question of why weproviders sometimes have so much difficulty be-ing honest with our patients.</p><p>This issue of Innovations explores an effort tointegrate palliative care upstream at a cancer cen-ter, specifically for patients with advanced lungcancer who may still be pursuing treatment fortheir disease.a This effort brings up the questionof when and how, we, as oncologists, and our in-stitutions as cancer centers, founded to fight thecancer, shift our language away from talking</p><p>about curative treatments. At what stage do weknow we are not talking about a cure any more?And what do we mean by curea remission thatlasts 5 years? How do we share this knowledge(often filled with caveats and probabilities, but noprognostic crystal ball) with our patients?</p><p>Pragmatically speaking, for patients with stageIII and IV non-smallcell lung cancer, the outlookis grim. While some patients with IIIa disease canbe cured, as can fewer patients with IIIb cancers,stage IV disease (such as extensive stage small celllung cancer) is generally considered incurable.Most such patients are dead within a year andonly 1% or 2% are alive 5 years after diagnosis.1</p><p>I believe that for any patient with metastatic dis-ease, it should be made clear that this is a termi-nal illness and any therapy is aimed at reducingsymptoms or extending life for some limited pe-riod of time.</p><p>This is important, in part, because currentchemotherapy for metastatic lung cancer only ex-tends survival for approximately 2 to 3 months.The length of time patients spend receivingchemotherapy is longer than the amount of timethe average patient gains as a result of chemother-apy. There is evidence that chemotherapy im-proves quality of life in patients with lung can-cer, but the quality-of-life experts I know are notentirely impressed by these data. Patients need tobalance the pros and cons of chemotherapy be-fore making a decision, and bandying about no-tions of cure would be very misleading.</p><p>So how does this language of curative treat-ments creep into a setting of metastatic lung can-cer? To sustain hope? To justify chemotherapy?To avoid upsetting the patient? To sustain the on-cologists own denial about how little progresswe have made in this area of oncology? Because</p><p>Dana-Farber Cancer Institute, Boston, Massachusetts.aThis personal reflection was included in the thematic issue Reinterpreting Comprehensive Cancer Care, Vol-</p><p>ume 4, Number 4, 2002 of the online journal Innovations in End-of-Life Care at .</p></li><li><p>the truth in these settings is too much to bear? Itdepends on the specific situation but I suspectthese misleading moments have as much to dowith the oncologists frailties as the patients.</p><p>The issue of balancing hope and truth is com-plicated and varies from patient to patient. Mostof us try to pay attention to the cues from the pa-tient in order to determine how much they wantto know. At the two extremes, there are patientswho say flat out that they do not want to hearanything about their prognosis and there are oth-ers who ask how long they have to live. Eventhen, it is not always clear what patients mean bythese words. Most patients are somewhere in be-tween. My experience is that even though it of-ten feels bad to me, most patients and familiesare grateful for a frank (but gentle) assessment oftheir prognosis. It is sort of an odd situationIrecently was speaking with a middle-agedwoman, her husband, parents, and childrenabout the fact that her prognosis suddenly lookedmuch worse than her previous physicians hadthought, and that her life expectancy was on theorder of a few weeks to a few months. On hear-ing the news, everyone started screaming andcrying. Now, especially in the world of whiteAmerica, one hates to create a fuss, and my im-pulse was to feel badly for upsetting them. Butthen, shouldnt everyone be screaming and cry-ing when a middle-aged woman is about to diefrom cancer? There is a tension here: you do notwant to upset the patient, but the reality is veryupsetting. An unfortunate impulse can arise tosmooth things over rather than confront the dif-ficulty of the patients situation.</p><p>Efforts to improve communication must takeinto account the trauma and loss that both sidesof the patient-caregiver relationship experienceduring the course of a terminal illness. I do notwant to trivialize this issue, but it reminds me ofhigh school conversations about nice ways tobreak up with someone. No one likes giving badnews. It is tough to watch the reaction and it takesprecious time because you want to help themcope. (This is not meant to sound heartless, butin modern medicine, it is nave to ignore the timeconstraints felt by practitioners.) Obviously thereare more and less harsh ways of delivering badnews, but sadness and anger are appropriate re-actions to hearing that one has a terminal disease(or that someone you care for is dumping you)and an important obstacle to these conversationsis our discomfort with these feelings. I find these</p><p>conversations one of the most meaningful partsof my work and I take pride when I perceive thatmy skills in this area are improving, but it iswrenching and draining to take someones handand walk them down the path that leads to thatpersons realization that he or she is dying of can-cer. No matter how kind you are, its still close tothe worst news you could possibly give them. De-livering such bad news also weighs on the prac-titioner because it reflects a failure of our profes-sion to develop more effective therapies andbecause it signals the nearing loss of someonewith whom one has built a significant relation-ship.</p><p>How much truth patients and their loved onescan handle is an important issue here. We allknow that denial and other defense mechanismsoften allow people to cope with what would oth-erwise be unbearable. I do not believe this everextends to the point of lying to the patient; I thinkof it more as withholding information that pa-tients are indicating they do not want to hear. Pa-tients typically focus on the best-case scenario, soone has to actively avoid laying out false hope. Itis very important to pick words and timing care-fully and, again, following the patients cues isessential. To me, this means allowing them timeand space to ask questions and then seeing whatthey want to know. Sometimes it is just trying tosense the feeling in the room. I found myself inseveral situations immediately after I finished mytraining where a rather specific and strong ten-sion permeated the room and it took me a whileto identify it as the patient wanting to talk aboutprognosis but being scared or unsure or reluctantabout initiating the conversation. In retrospect, Ifelt stupid, like I was discussing everything ex-cept the most important thing. And I suddenlyunderstood why my conversations with those pa-tients seemed to be progressing so sluggishly. Butone has to learn to recognize the cues and some-times theyre subtle and sometimes you misreadthem. I am fortunate to work with nurses whohelp me see what I otherwise might miss and tohave had a number of outstanding clinicians su-pervise my training in whose footsteps I can fol-low.</p><p>Although the impulse of many physicians Iworked with in my training was to give lessrather than more information in these settings,my experience so far indicates that patients pre-fer to have too much rather than too little under-standing of their situation. Several times in my</p><p>GILLIGAN658</p></li><li><p>fellowship I went back to speak with patientsalone, after seeing them with the attending physi-cian, in order to give them a more accurate un-derstanding of their poor prognosis. One womanhad persistent metastases from her lung cancerafter chemotherapy but was told she was in re-mission. Another had multiple brain and othervisceral metastases from melanoma but had notarranged her affairs and did not realize she wouldlikely die soon. I worried at those times aboutwhether I had crossed the line where honesty be-comes insensitivity (or worse). I was surprisedhow many phone calls and e-mails I later receivedfrom these and other patients or their families ex-pressing gratitude that someone had finallywiped away the vague euphemisms and allowedthem to understand what to expect.</p><p>While I try to respect patients limits about howmuch to tell them, I do think there are times thatone has to give people more information thanthey want. When they have a level of denial thatis leading to poor decisions or to a failure to makeimportant plans for the future, then I sometimesfeel obliged to get them to confront their prog-nosis before they feel ready. This is especially rel-evant for parents with young children or othermajor responsibilities. On the other hand, work-ing with residents and interns, I am often struckby how frustrated they get if someone who is ob-viously dying of cancer refuses to acknowledgethis fact and behave like someone dying of can-cer. They do not appreciate that the patient gen-erally is much more aware than they give him orher credit for, and they undervalue the utility ofdenial. In these settings, I worry the truth be-comes something of a club and I worry about theyoung physicians bashing the patient over thehead with it. But I do not think it is an easy bal-ance.</p><p>My final thoughts concern the interaction be-tween palliative care providers and oncologists.I have found that the involvement of a palliativecare service is very helpful when it becomes clearthat anticancer therapies are failing, especiallywhen the patient is in deep denial or is refusingto discuss the prognosis. I believe that some pa-tients find it easier to discuss end-of-life issueswith someone other than their oncologist. Oncol-ogists and patients build a relationship basedlargely on fighting the cancer. In terminal cases,you get to a point when the fight has to end, buthearing this from your partner in the fight canseem like abandonment and giving up. You have</p><p>built this bridge of hope that you will be able tokeep the disease at bay for as long as possible,and to some extent denial gets built into the re-lationship. It has been my strong impression thatwhen the time comes to change course and focuson palliative measures, it is easier for some pa-tients to have those important conversationsabout death and what they want to do with what-ever time they have with a new person who isnot invested or implicated in the relationshipbuilt on the hope of holding the cancer off withchemotherapy or other treatments.</p><p>To put it differently, what my patients oftenappear to want to hear from me is how we aregoing to fight their cancer. As oncologists go, Ihave great respect for the limitations of whatchemotherapy can accomplish, yet I have foundmany patients to be very difficult to dissuadefrom receiving chemotherapy when I did notthink it was a good idea. While sometimes I canalso be their palliative care doctor, I have foundit extremely helpful for some patients to have thepalliative care service come insometimes withme, sometimes on their ownto have a its timeto change the course conversation (in additionto helping with symptom management). I knowthe obvious rejoinder is that I am simply not goodenough at these conversations and I will readilyadmit as much. I still think that the value of pal-liative care providers is not just that they are bet-ter at these conversations, but that theyre notburdened by the history of a were going to fightyour cancer together relationship. Clearly, manypatients do want to have end-of-life discussionswith the oncologist with whom they have built arelationship of trust over the months or years: onehas to make decisions based on the individual pa-tient. And I certainly do not mean to imply thatthe oncologist should exit when the palliativecare team arrives. The palliative care team is anaddition, not a substitution. The oncologist mustbe actively involved in communicating with thepatient about the transition from anticancer ther-apy to palliative care only; to withdraw at thatpoint is to betray the patients trust. A transfer ofcare may occur when a patient goes into hospicecare, but it is essential that patients not feel aban-doned by their oncologists when it becomes clearthat death is near.</p><p>For me, it is not helpful to think about these is-sues in terms of peoples rights or in moral ab-solutes. Cancer and mortality are intimate issuesand our successes and failures of communication</p><p>WHEN DO WE STOP TALKING ABOUT CURATIVE CARE? 659</p></li><li><p>take place in the context of very personal rela-tionships.</p><p>Figuring out the right thing to do or say ismuch more about the ongoing process of learn-ing to care for my patients in the best way possi-blenavigating an individual course with eachperson, one that we find together.</p><p>REFERENCE</p><p>1. Ginsberg RJ, Vokes EE, Rosenzweig K: Non-small celllung cancer. In DeVita VT, Hellman S, Rosenberg SA(eds): Cancer: Principles and Practice of Oncology, 6th ed.New York: Lippincott, Williams and Wilkins, 2001, pp.925983.</p><p>Address reprint requests to:Timothy Gilligan, M.D.</p><p>Dana Farber Cancer Institute44 Binney Street</p><p>Dana 1230Boston, MA 02115</p><p>E-mail: Timothy_Gilligan@dfci.harvard.edu</p><p>GILLIGAN660</p></li></ul>