Susan Silver

Book Review: Caring for persons with AIDS and cancer

CaringforpersonswithAIDS and cancerisnot an easybook. It is not a “how-to” book asits namemightsuggest,thoughit includessectionsonpain andsymptommanagement and nutrition for theterminallyill. Neitheris it an “introduction to hospice” book, thoughit definesanddescribesthepalliative careconceptandinpatientunit. And whilethebookoffersafairlycomprehensiveetiology of both AIDS and cancer,it is not a medicaltext either. Rather,Caringforpersonswith AIDS andcancertreatsthe ethical-spiritual foundationof care-giving. Tuoheybeginswith adescriptionof theperson. Drawingon scholarsfrom amultitudeof disciplines,heviewsthe personwithin the contextsof culture, relationships,political entities, role playingandothers. To thesehe adds thecharacteristicof integration,which hedefmesas: “pulling thingstogether into acoherentandmeaningfulwhole, makingsenseof realitysothatit canbe lived.” Integrationbecomesthekeyto assessingcarebecauseit helpsdistinguishbetweencarethatleadstowellbeing or its opposite,suffering. Suffering, in turn, is astatein whichintegration is disturbedor prevented,regardless of the clinical condition of the patient. As noted,Tuoheyincludessections on themoreutilitarianaspectsof caregiving, but the heartof the book is its lastchapter,“Morally responsiblecare forthetenninallyifi.” HereTuoheyassertsprinciplesthatmayhavebeenacceptedastruismsin the hospicecommunity,andgoeson toprovideamoral explanationof why theyaretrue. The actofdyingis theprocessofre-integration with sometimespainful, disappointing,andunfairreality. Thedisintegratedpersonwill feel thatdeathis an outsideforceimposingitself ontheunwilling subject. But by mobilizing coping skills, evendenial, the patient canbegintosynthesizethenewreality. He canmakedeatha partof himself, runningitscoursein itsowntime,along with all oftheotheractivitiesof living. The patientneednot be happyabout imminentdeathto havereachedanaccommodationwith it, but he neednot sufferfrom it either. Thus,Tuohey says,the will of the patient is fundamentalfor wellbeing. The patientknowswhat careheneeds to enhancehiscomfortandassurecontinued integration. “The approach neededto relievesufferingis onethat gives the personthe opportunity for willful involvement in his/her own care.” The patient/family is the unit of care, Tuohey asserts,becausethe patient’srolewithin thefamily is essential tohissenseof himself. Bypreserving thefamily, thepatient’ssenseof integrationis sparedonecommonsource of assault. Tuohey alsobelievesthat artificial nourishmentand hydration maybe withdrawn, while useof narcotics for pain relief is appropriate. Thesearetwo oft-debatedprinciples, but Tuoheyjustifies them within the contextof the reliefof suffering. Any act that interfereswith the patient’s processof integration(or failure to act againstan avoidableinterferencesuch as pain) is contraryto relief of suffering. “Any intervention,”hesays,“that imposesanyformof careon theperson is inappropriate.” (emphasisin original). Perhapsthemostprevalenthemein thisbook is patientcontrol. If we accept the premisethatthe patientis involved in an ongoing processof integrationandre-integration,we must acceptthat the patientcan andshould order the world aroundhim. Thus, whatheisfeeling,thinking, ingesting, perceivingare uniquely his, and the care-giver’sroleis to supportthe need to keepthe world intact. Although Tuohey believes that reconciliation with deathis possible, healsobelieves insomepeople’sneednotto bereconciled. Thus,control supersedeseven acceptance. Tuohey’sconceptof control as the basis for integration is the spiritual counterpartof theconcept of controlas apolitical right. Many hospiceswere founded upon the political principle that patientshavetherighttofull information, the right to participate in decisionmakingaboutcare,therightto decidethat furtheraggressivetherapy is inappropriate,the right to be in familiar, comfortable surroundings, etc. However,thehospicefoundersdid not necessarilyknowthattheprinciple uponwhichtheir assertionsrestedwas the unalienableright to control. Likewise,theymaynot recognizecontrol in its spiritual aspectuntil they delveinto thistract. Perhapssectionsof Caringfor perSonswithAIDS andcancershouldbe requiredreadingatthe verybeginning of hospicetraining. It couldbehoped thatwhat to do as a care-giverwould flow naturally out of this carefuland compeffing descriptionof why we do it~:I —SusanSilver

Book Review: After great pain: A new life emerges

The first paragraphof After Great Pain launchesusintothesagaof Diane Cole,thoseclosesto her,andtheseries of traumasand lossesthat they would face. Thefirst washerboyfriend’slifethreateningcancer;before her story endsshewasto becomea triumphant, if wary, caregiver,agrieving survivor, a victim of threatsto herown life, and a silent sufferer of an invisible loss. Coveringaspanof 16yearsin herearly adulthood,Cole emergesa different person,tingedwithsadness, butableto find joy in hernewlife. Cole’sboyfriend’sillness,while she wasstill incollege,consistedof radical, disfiguringsurgery,aggressivetherapy, and a prolonged period of recovery during which his prognosiswassouncertain that her own mother recommendedbreakingoff therelationshipto protect Diane from further pain. No soonerwasherboyfriendseeminglyout ofthewoods,thanCole’smotherfell ill with terminalcancer. While Cole’s description of these overlappingillnessesis detailed,it is in nowayclinical. Rather,it is a recounting of feelings, theirs and hers, and strategiestocope.Colesuddenlyfound her life “out of sync” with everyone aroundher,tryingto maintainaroutine, yet constantlypreoccupiedwith concerns and needsof the ill. With her boyfriendshehadto learnto live with doubt,andwithhermother,thecertaintyof death.Abruptly, shewasexpected totransformherselffrom anadolescent inneedofnurturingandreassurance, to anadultprovidingsupportto herloved ones. With the recoveryof one and the deathof theother, Colefelt theneedto find herself, to establisha life of her own.Always theabsenceofhermother waspalpable,buttherelationshipwith her boyfriend was renewed.In the courseof theyearthat followed, Cole learnedto live again. Here,Cole’snarrativeisinterrupted by severalchaptersof analysisof loss and grief. She cites well-known researchersandcliniciansin thefield, as

Book Review: The Hospice Handbook

The HospiceHandbookbills itself as acompleteguideto thequestionsof what hospiceis, how to find theright one, and how to get your money’s worth,amongotherbasics.Indeed,it is justthat.It beginswith theconceptand definition of hospiceandoutlinesthe teamapproach,thenatureof palliative care,andthevariousstructuralmodels in operationtoday. TheHandbookoffers a description of the first call to hospicefor referral andtheproceduresandaspectsof care that follow. Theaccountis entirelyaccurate,going back over issuesand techniquesthat areas old as hospice, itself. In anextensivechapteron pain, for example,thetypes of pain areexplored,theadministrationof analgesics on a scheduleratherthan p.r.n. is explained,and thedebatesaboutaddiction andthenecessity(or lackthereof) of euthanasia re discussed. Whilethereisnothingmisleadingin Beresford’sdepiction,neitheris there muchnew. Onewonderswhetherhe is familiar with anotherguidebook,A Hospice Handbook (Hamilton and Reid, eds.) publishedin 1980. Not surprisinglytheir contentsarenearlyas similar as their names.Beresford’s bookmay havea less emotionaltone sinceBeresfordapplieshisjournalist’s style while much of the Hamilton is written asfirst-personnarratives.However,Beresforddoescapturethe“feel” of hospiceby concludingeachchapter with thebrief personal observationsof a hospicepatient, family memberor professional caregiver. It is interestingto speculateabout the similarity in the two guidebooks, written 13 yearsapart. Has the public remainedsouninformedabouthospice overall thoseyearsthat therudiments mustbespelledoutanew?Or havehospice and the issuesconfronting it remainedso unchangedthat thedescription more than a decadelater is interchangeablewith the original?Neither is a particularlywelcomeconclusion.

Book Review: On death without dignity: The human impact of technological dying

Judgingthis bookby its cover,one mightexpectthatit is atreatiseon man andmachines,on extraordinarymedical measures,on the ‘high tech” of technologyandits effecton thedying. That is notthecase.Rather,On death without dignity is about death as a reflectionof a societyrootedin technology and the permeatingeffect that that mindsetbrings, evento the ultimatelife experience. DavidMoller is a sociomedicalresearcherandhis book is the resultof monthsof observationon roundswith physiciansand in private interviews with dying patientsin a largeteaching hospital. Thecontentis scholarlyand the style erudite,not intendedas light reading. But Moller’s thesisand its explication hangtogetherand arewell worth theeffort. Specifically,he asserts:

Book Review: It All Begins With Hope

It AllBeginsWithHopeisnota very new book,butit is a goodexampleof howa professional caregivercanrelate the storiesof patientsand their loved oneswithoutinterjectingherselfasthe heroine. As its subtitle implies — Patients,Caregivers& the Bereaved SpeakOut — thenarrativesarein the non-professionals’ ownwords,withobservationandcommentaryby theauthor setapartin introductorychapters. “The Hope to Live Fully: The Patient’sStory,” thefirst section,offers nine individual vignettesby nine cancerpatients.In threeor so pageseach, oneaftertheotherdescribestheimpact of their diagnosisandthechallengeof copingfrom day-to-day.Somedisplay almost total serenitywhile others describefear, isolationor a new-found meaningin their lives. Onepatientadmitshis resistanceto supportgroupswhile anotherdescribes choosing the otherbald man in the doctor’swaiting roomanddesperately pouring out his fears.Eachgainsthe valueof sharedconcernsandcollective support.Among thesepatientsthereis noattempttohidethedifficulty of their circumstances; for sometheemotional painandtraumaarereadilyapparent. In her introductionto the first section, Jevneacknowledgestheaweand gratitude that she feels for these patients and the understandingthat thereis no “right” way to cope. In the preambleto the secondsection, thecaregivers’stories,Jevnesays that shedeliberatelychoseto exclude the uninspiredin favor of thosewho coulddescribethereliefof sufferingas their pam1~1ount goal.She learnedthat her “self” had to changeto become moresensitive,respectful andpositive. To be otherwisewasto allow thediseaseto “win a little.” For their parts,the caregivers— professionalsfrom variousfields, and friends and family membersof the patients— echoJevne’sneedfor sensitivity anda turning from curing to caring. Plenty is learnedand shared betweencaregiverandpatient,butnot one caregiverromanticizesillness or death,norpresumestobea co-traveler with thepatient.

Book Review: The Culture of Pain:

— Gilles Delueze This headquoteto the final chapter of TheCultureofPaincouldserveas a summaryof the entire book. It is a scholarlyvolume,part artistic-literary analysis,partmedicaltext. Morris’s thesisis thatphysicaland mentalpainarenot separateand distinct. He calls thisnotion, theMyth of Two Pains.Rather,hesays,thetwo are inextricablewith thephysicalsensation dependingentirely uponthe meaning oneimpartstopain.And thatmeaning isin constant flux acrosstime,culture, andsocialcontexts. Theorganicmodelof pain,asMorris explains it, describesa series of transmissionsamongnerves and muscles.In recenttimespainhasbecomepredominantlychronic rather thanacute,and, by definition, impossibleto “cure.” Butwith chronicpain, theneedandfreedomfor interpretation areof greaterimportance.In the late 20thcenturypainis no longerasymptom somuchas adiagnosis.

Book Review: Where The Mind Meets The Body

WhereTheMind MeetsTheBody maybeconsideredahistoryof science. Butthe sciencethatit chroniclesis so new that theearliestexplorationsdate backonly asfar asthe 1950’s.Mostof the researchis muchmorecurrentand thevastmajorityofknowledgeisyetto come.Thefield is mindbody influencesorpsychoneuroimmunology. Dienstfrey is interestedin showing thatmanyaspectsof the mindcanaffectmanyof thebody’s properties,including its health.But he goeson to assertthatonly anintentionaloraware mind—notmerelyaconditionedmind — cantruly accomplishhealing. Theearliestandperhapsbestknown mind-body researchwas into Type A behaviorandits effectonheartdisease. Dienstfreyoffers a blow-by-blowaccountof theresearchthatestablisheda TypeA, theargumentsof itsdetractors, andthe ultimate conclusionthatemotionswithout intent areinsufficient to explainconsistentlythe mind’s effect onthe body. The otherareasof mind-body researchthatarerepresentedareHerbert Benson’sRelaxationResponsebased on blood pressurecontrol through meditation,Neal Miller’s training of the autonomicnervoussystemandthe eventualuse of biofeedback,and Robert Ader’s activation of the immunesystemthroughconditioningof themind’s responses. Also recordedare CandacePert’s workon neuropeptides, receptorsin the brain,andthemediatingroleoftheemotions, aswell as TheodoreBarber’sresearchon hypnosisandthe remarkable power of suggestion.Finally are Gerald Epstein’sexplorationsof imagery which, devoid of emotion,can cause direct changesin the body’s condition.

Book Review: Caring for a Loved One with AIDS

Amid the painand fatigue, thebest possibleoutcomefor thecaregiveris a new-foundappreciationfor one’sown abilities, technical and emotional. Many of thecaregiversinterviewedin a studyon which this bookwasbased reportedafeelingof satisfaction, pride, anda contentmenthat they haddone thebestjob possible. Brown and Powell-Copeidentify five aspectsof caregivingthatarecommon to eachexperience.They are,of course,buttold herethroughthe eyes of thecaregiver. Living with lossand dying begins with the diagnosisand does not end evenwith the deathof the patient.In between, thecaregivermustgiveupthe familiarpast,andthelong-tennfuture. Most caregiverssay that they learnto live day-to-day,andgain a greaterappreciationfor the good times in the present.Another “space” is found by many, however,when, in the final stage,they sit at the deathbedlosing themselvesin alife reviewandevaluation. Whenthe presentis too painful, thisconnectionwith thebestof thepast offerssolaceto manywho neartheend of thecaregivingjourney.

Video Review: Assessing the cancer pain experience

If thesubjectsofAssessingthecancer pain experience— physicianand patient—werehighlydynamic,articulate and expressive,one might be temptedtocriticize this tapeaslacking realism. There is no causefor such criticism here. Thetapeconsistsof adoctor,David Haddox,anda38-year-oldpatient,Mr. Williams, conductingan interview to determinethenatureof Mr. Williams’s pain. Beforehand,Dr. Haddoxdescribesto a medicalstudent(we see only the backof hisheadthroughout) theelementsof a thoroughpain interview. He mustestablisha basic pain history, learnthe meaningof painfor the patientin relation to his cancer, explorethe impactof painon the patient’slife, andgivethepatientexplicit permissiontoverbalizehisfeelings. Eachof thefour elementsis treated separatelyinsegments oftheinterview, brokenup by freeze-framesinwhicha voiceover andgraphicsreiteratethe salientpoints.Finally, thedoctorsummarizes his technique,seatedagain with thestudent. Theproblemhere,is that while the doctorfinds outwhatheneedsto know, thepatientdoesnot.Insteadheis faced with aconstantly-noddinghead(thisis describedas“activelistening”) butfew answers.

Book Review: Healers on Healing

Healers on Healing edited by Richard Carlson, PhD, and Benjamin Shield. Jeremy P. Tarcher, Inc., Los Angeles, 1989.Paper, 205 pages. Healers on Healing is being reviewedherenot becauseit is new, but becauseit is old, relatively. That is, over the threeyears since they were written,theessaysin thisvolumehave agedand the public has had time to catchupsomewhatwith theirNewAge thinking.For the mostpart, theyhave not yet enteredthe mainstream,but theyare coming closerand some of theirviewpointshavegainedconsiderableacceptance. Healerson Healingis thefirst in aseriesof “new consciousnessreaders”on the “questfor human growth and the transformationof the spirit.” Morethanthirty-five essays,just a few pageseach,aredivided into eight sections. Thesectiontitlesseemsuperfluous, though, becausethe ongoing themeisasearchfor “thegoldenthread of healing.” Thatthreadis thenotionthathealing lies within thepatientorclient; it is not imposedon a passivesubjectby the healer.Manyof the essayistsrefer to the healingagentas love, or total acceptanceandopennessbetweenhealer andhealed. Not a single drop of medicine figuresin theseessaysbecausehealing referstothemindandspiritor theinner selfandonlycoincidentallyto diseases ofthebody.Oratleastphysicalhealing isjustthenearendof acontinuumthat extendsinto the spiritual realm. For that reasonit is possible,as Stephen Levineputs it, to “heal into death.” By this principle,healingbecomes acutelyappropriatetohospicepatients andproviders.JanetF.Quinnpointsout that the root of the word heal is the Anglo-Saxonhaelen which means whole.By shifting thetraditionalmeaning ofhealingto includewholenessand completeacceptance, the temilnally ill areoftenhealedwhentheydie. It is fascinatingto note that the majority of the authors are Californians,and their organizational affiliationsareaninventoryof NewAgeconceptstoday.To namebut ahandful: