WORLDWIDE BESTSELLER HOSPICE AND PALLIATIVE MEDICINEOxford American Handbook of Hospice and Palliative MedicineAbout the Oxford American Handbooks in Medicine ‘The Oxford American Handbooks ae pocket cn books providing prac al gacance in quck reference nate form Tiles coverrsjor edi pea tes orcroseapecaly topes and are smed st sides res.dent, ernst fly poplars an practeng pcan win speccdacples “Ther reputations bult on iduging the bes incl wformation, com pernted by his, tos and acc from the authrs. £2eh ore sara Feviewee by senior subject expers, resides, ng stodents to ese that ante flees the realy of daytoday media practic, Key series features + Wien in shor chunks, each toni is covered na twovpage spread te erable readers tind information guy. 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No prof puleon may be reprodces Soren rete ster rite ay frm by mS tleanie neha poiacopyy eerdg or ater Swthot the por perminon af Gord Use Pens, bay of Congress CoegnginPtetn Bite pen — (Oxeed ArwrinFandhost in nadine) Fhndbook hospice me pallnve eeche Iles vg elereee and eb ans atet Ber Eearga Hl Yewaryangry srs Te Hodes ‘espe wd polaive meine WSs Ont Smee nba IBRAR Pano restenosis W837 saarseaen —aorenses‘This mater net intendes tobe. and suid not be corsiered. 31> state for medal or eter professional aves. Trezenet forthe con~ ‘dvone deserved inthis matera i hgly dependent on she movida freamstnces And whie tis material designed ofl acerat for Imllon with respect ta the wbject matter covered and to be cutret tthe time was weten research ang snowedge about mecca and heat ses is constantly evelvng an cose schedules fr medicabons are being reed concn. wth new ie fet recognized and accountes for regu, Reader mut therefore slays check te >rocuc forma ‘Son and eink procedures wth the mat upsouate peduned proc Uctinformation and esta sheets provided by the mandlactrers andthe most recent codes of conduct and safety region. Owford Unversty Pres and the authors make no representations or warranties co reacers express or mpieg. a to the accrac oF completeness of is materia incucing without imation tat they make ne representation or watra tes a5 to the accuracy or efficacy of the drug dosages mentioned nthe Imateral The author ané the pusishes da nat accep, ane exprenly ‘Sela, any vesponaity fran ably loss, rk tray be ceed forincured as consequence ofthe ue anlorappication of ry of he contents ofthe materThis page intentionally left blankPreface In the United State, hospice and palltve medicine has emerged a8 3 ew subspecalty recent recognzee by te Arevian Board of Medea Specalces. Durng the ast 10\jeas, tere ha been a very significa increase inthe number of npaters nd osoatientpalve ere program? $e well mojo neease nthe numberof patent no acces hoxD ce forendotife cre Unfortunately eeuestonal llr are aging being, and the vast rant of media studens,vescers and even flaws receve maa pallaeve medicine educiton in te Unted States, However, hete Rovor Dyscans ang ws 2 number of busy cincal specalsts ae exposed to averse with progressive ineorabeineszes ane their ales on 3 ly bai “The purpose of this Handsook ts provide up-to-date, practi and concse formation to nealh-eare professionals debveng cite to alerts Fecuring nospee ae palatine cave Ih the Usted Sates, Ths dudes Physcats, nurse practiones flows residents, and students [All the chapsers ae aimed primanty atthe cal and adminisvatve setangemente within the Amarin heathcare seem neliding the NO Dice Meceare Benet, ‘We believe ths book wil provide raps acess to most of the dy bedside eineal and administrative needs, and we hope wil el au el leagues nthe delivery of excelent palave ang hospice care, ‘We woue tke to acinowlee the athors of eath of the chapters for havng conmfzedteirtme ne forte our ont projec, We wostaso lee to aeenowiegge the commitien to excelence by Oxvord Unversity Press ane in parceuar Andrea Se, our Senior Feta, fr the excelent ‘workin coordinating ovr book Fly, te woud xe to acknowledge the (aly effort of heatfvave professanas who have convibued by thar uly ciel wore education ane research to the ceve opment of the tentaordnary body of mowledg tht we have had the prvege to 57 ‘herze 1 hi Doae Sram Yennus MO Eduardo Bruen, MD Houston March 201%This page intentionally left blank10 " 2 B 4 5 6 ” 8 9 20 Contents Contributors xi Definitions and key elements in palliative care Symptom assessment Clinical decision making Pain assessment and management Fatigue Cachexia Dehydration Anxiety and depression Sleep disturbance Chronic nausea and vomiting Constipation and bowel abstruction Delirium Clinical issues related to palliative sedation Dyspnea Emergencies in palliative care Other symptoms: xerostomia, hiccups. prurits, pressure ulcers and wound care, lymphedema, and myoclonus Management of cancer treatment-related adverse effects Radiotherapy and palliative care Hospice approach to palliative care including Medicare hospice benefit Psychosocial and cultural considerations in palliative care 2B FT B 87 97 105 115 a7 139 153 165 169 181 193 205 29 2 ut2 2 m4 25 %6 w 28 2» 30 2 2 uM 35 36 37 Spiritual issues in palliative care The palliative care team Family conference: roe in palliative care Ethical aspects of palliative mecicine Prognostcation in palliative care Frequent pharmacological interactions in palliative care Pediatric palliative care Pallation in the care of older aduts Palliative care in ené:-stage heart failure Palliative care in ené:-stage iver disease Renal paliative care Palliative cae in patents wth AIDS Palliative care in end-stage neurological disease Palliative care in end-stage chronic o pulmonary disease Palliative care in the intensive care unt (ICU) Research in terminally il patents Prevention and management: burnout in healthcare providers Index 465 253 269 2s 2a 299 313 333 349 361 amt 381 391 401 a5 25 29 449Contributors Elizabeth A. Barnes, MD, FRCPC Deparcnent of Radation Oncology Toronto Sunnybrook Reional Cancer Cee Tororo, Ontare, Caraea Shirley H. Bush, MBBS, MRCGP, FACHPM. Drvision af alate Car, Unversity of Ota Clnes! Seenst laabeth Bruyere Reseach Iatiute €8R) Pallatve Care Physcan, The Ota Nosplallruyare Contig Care (Oxana, Omari, Canaca |. Randall Curtis, MD, MPH Harboriew Mien Center Seale, Washington Shalini Dalal, MD Palianve Care and Rehabilitation Medicine The University of Texas MD Anderson Cancer Center Houten, Tex Sara Davison, MD, MSc, FRCPC -Assocate Profesor of Meecine Dison af Nephrology ane immunology Univerty of alberta Fat of Mediene Eamanton, Alberts, Cand, Eridio Del Fabbro, MD Paliatve Care and Rehabitation Medicine ‘The Unversty of Texae MO Anderson Cancer Cener Houren Tex Marvin Omar Delgado Guay, MD The Univeraty of Texas Medial School a Houston Lyman & json General Hospital Houten, Tene Rony Dev, DO Palistve Care and Rehabittion Medicine The Unverty of Texae MD Anderson Cancer Center Houten, Tex Deborah Dudgeon, MD Direcor, Palla Care Program ‘Queen's Universty Departmen of Medicine Kingston. Oncano, Caraeaxii CONTRBUTORS James D. Duffy, MD, FAAHPM, FANPA Profertor of Peyenaty The Univeraty of Tevae MD Anderson Cancer Center Houston, Texts ‘Ahmed Elsayem, MD Paliseve Care an Rehabittion Medicine ‘The University of Texas MD Anderson Cancer Center Houston Text Nada Fadul, MD Pallatve Care and Rehabilitation Medicine The Universty of Texas MD Anderson Cancer Center Houston, Tex tty Ferrell, PRD, RN, FAAN Professor, Nursing Research ane Eduction hy of Hope Dette, Calforia hime S. Gomex MD, FACC, FSCAL Sprng. Texas Sandra P. Gomez, MD, FAAHPM, Menoral Hemann The Hospital sprog Texas Joan K. Harrold, MD, MPH Medial Brecon Vie President, Medial Serices Hospice of Lancaster Coonty Linear, Peansyanis David Hui, MD. Palistve Care an Rehabilitation Medline The Universty of Texae MD Anderson Cancer Center Houston, Texts Margaret tsaac, MD Hrborview Meciel Center Seale, Wachingon Meiko Kuriya, MD Paliatve Care and Rehabilitation Medicine ‘The Uniersty of Texas MD Anderson Cancer Center Houston, Tex ‘Ana Leech, MD Paliseve Care and Rehabittion Medicine ‘The Universty of Texae Heth Seance Center Houten Medea Serol Heuston, TexasCONTRBUTORS xii Gabriel Lopez, MD Paliaeve Care and Rehabltation Medline The Univesty of Texas MD Anderson Cancer Center Houston, Tex Mary Lynn Mepherson, Pharm D, BCPS, CDE Deparment of Pharmacy Practee and Seance UUniversty of Marne Schoo ef Pharmacy Bulumere Maniand Valentina Medici, MD Dison of Gastroenterology and Hepatology Univers of Caiforia Davs Medial Cencer Sacramento, California Frederick J. Meyers, MD, MACP Executive Aesoeate Dean Deparcnent of eral Meng Univerety of CaToma Dave Medel Center Sseramenta, Cairn Jeff Myers, MD Paliasve Care Const Team (cette Cancer Carte Sunnybrook Meath Seences Toronto, Ontario, Cansea Zohra Nooruddin, MD Pallatve Cae and Rehabltation Medicine The Universty of Texas MD Anderson Cancer Center Houten, Tex Edward O'Donnell, MA dunce Assistant Pretesor CClineal Management and Leadeship School of Heath Scences The George Wathington Unversity Washington, OC Henrique A. Parsons, MD Paliseve Care an Retabitstion Medicine The Unvesty of Texas MD Anderon Cancer Center Houston, Texts, VS. Periyakoil, MD Clinical Astocate Profesor, Medicine Sanford Schoo of Mediene Stanford, Cifoma,xiv CONTRIBUTORS ‘Christina M. Puchalski, MD, FACP. Executive Director George Washington hsttute for Spitualty and Heath Profetior of Matcine and Heath Scences George Washington Univesty School of Medicine Washington, DC Suresh K. Reddy, MD Paliseve Care an Retabittion Medicine The Univeraty of Texae MD Anderson Cancer Center Houston Texts, Christine S. Ritchie, MD, MSPH Drision of Gerontology and Geriatric Meine Deparment of Meccne “The University of Alara 2t Birmingham Biringham, Alabama Rhonda Robert, PhD ‘Auwocite Profeior,Pedatrcs ~ Pent Care “The University of Texas MD Anderson Cancer Center Houston, Tex Lorenzo Ressare, MD, FACP. Chie of Gastroenteroiogy 2nd Hepatslogy UUniverty of Caiforia Divs Medal Comer Sserameno, California Mary LS. Vachon, RN, PHD Reseach Scientist ane Senor Mental Heath Constant Clarke Inte of ayehiery Toron, Ortare, Canada ‘Charles F. von Gunten, MD, PhD Provost, Center for Palate Sues Sin Diego Hospice and Instat for Pllatve Meine Sin Diego, alfomia Tobias Walbert, MD, PhD, MPH Deparment of Nevre-oncoony ‘he Universty of Texae MD Anderson Cancer Center Houston, Tex Paul W. Walker, MD Pallatve Care and Rehsbltation Medicine The Universty of Texas MD Anderson Cancer Center Houston, Tex Kirsten Wentlandt, MD Princes Margret Hospi! The University Healt» Network ‘Toronto, Ontario, CanadDenna S. Zhukovsky, MD, FACP Paliatve Care and Rehabilitation Medicine The Univesty of Texas MD Anderson Cancer Center Houston, Tex Camilla Zimmermann, FRCPC, MD, MSc Princes Margaret Hostal ‘The Univesity Healt Network Toronto, Ontra, Caraes| CONTRBUTORSThis page intentionally left blank' Defi ns and key elements in palliative care Sriram Yennurajalingam, MD Eduardo Bruera, MD bproducion 2 Qualty practice gudetnes 22. CHAPTER 1 Definitions & key elements Introduction The sim of palisve cre erved rom a Lan word meaning oak’ istoreleye oullering and improve quay of le in patents and thee furl tnd caregiver)" The term plate cares commonly Wied for pallave Gre ina nospal setting “The word hespce. carved ror Late root, “hospes” refs to bosh to guests and hess. The term soporte ave refers to ear tat els the fare that hes the patent ane family fo cope with cancer and etree ott Terminal care usualy reer to management of patents during the lst few dys, wes, or ribs of Ue rom vie point when sear a the patents na sate of propresive deine “The Werle Heath Organzaton (WHO) éefinton of pallatve care and the Clee! Pracace Gites for Quality Pace Care consensus defintion| of plisve cre are thore cefntons commonly accepted allowng are the cefntions 1 desersed at Miwerrwho.aeanerpalatveeet n= Loner! (WHO definiion) ane tplvnrn.nasonalearsensusproectorg (NCP defntion (laken vrbutin 0 ret her orgal mean WHO definition of palliative caret ‘The WHO cefinespatinte care 2 an pproseh thatimproves the ql iy feof patter and ther fame ‘cng the problem trodes esthrestening snes through the prevention and rele of sulfeing by rears of exty dentition ane mpeceable sussiment and rexnent of pus and other problems, physeal pyehosocal aye spat In aden the WHO defines the key elements ef pllative are = Provide rele rom pat and eter dressing symptoms {Afr fe and epi ding sa normal process { Insene nether toharen nor porpone dsth 1 Integrate the prycholope! ad spi ampects af patient care 1 Ofers support system to help patents ive stately 3s possible ‘nut deat + Ofer Support system to help the fal cope during he pues lines anh the own Derearerent «+ Urea eam approach co adores he ness of ates ane their ‘ares incloeng aerenementcouneaing Winecees «+ Enhance quali of Me ane may seo postive influence the course of nest, « leappleableexty nthe course of les In conjuction with ether therapies at are itendea co prolong Ue, suth as chemotherapy oF Fidatontherpy and sles thor nverngstonsneecee Yo Dever Understand ane manage dstresing cinel completions Pane islet(QUALITY PRACTICE GUIDELINES 3 Quality practice guidelines “The National Consensus Projec (NCP) wa formes ta meet the need for staneardaation of palate cre, ith 2 falta prove palate are 5 {he United States. The NCP fr Quaiy Pallative Care Consorum rally ‘cons of 1) the American Aeadeny of Hospice and Palatve Meecine (AAHPH, 2) the Cener of Agree Palizve Care (CAPC). 2) the Hospice and Pallave Nurses Assocation (HPNA), and 4) the Navona Hose ane Palate Care Orpanation (NHPCO}. Thlate 2006 the Navonal Qualty Farum 3 rational leaéerin heath ee quay, scented ad acopted the cna practice gdelines for culty Palate are by NCP witun the dociment “& National Framework or Pallaove ane Hospice Cue, Consensus definition of palliative caret ‘The NCP defines palin cre 3 flows "The goal of pliatve cre i so prevent ane releve ulleringsn6%0 ruppart tne bes parable quit of Leer patients ane the files rages af e sage f the cesta or he need fr other therapies ulasve cre is both 2 phlosopty of care and an onpuized. highly strucued system for celverng eae Paliave are expands "atonal, Geessenoee medic resents fo neude the goss ofendancing qa iy of fe for patent and family. optimizing fonction, hoping wit eee sion Imleng and providing opportune ar personal growth Ar such be celvered concurrenty wih Meoroianging exe or 2 he man feu stare Fe 1). vee Modine They tie Cre Damen ot eortionce | ete eine ert iby Dennen ou Fig 11 Deter of palate ave drig ie esdreng nes Gene {recnySee Rion Cones jt or Gun Paise Ce Qalyranan Ce fan4 CHAPTER Definitions & key elements. Palate cae is aperatonaized through affcive management of pan and other datresing simptoms, while Incorporating paychocecal and Spirtal ere with cosigertion of pales ad family needs, preferences, values, bees and eure. Evssation and weiter shouldbe compre: hens an patient ceneres with foc on te central role of hemi Un in cecon mang Palle eare afm Ule by supporting the pavent ane fi’ gale forthe future, nlidng thee hopes force of He protonation 2s wall, 1 thelr hopes for pence and dignty throughout the course of lness. the yaproces and desth Palla care ms to guide and asst the pact ate ‘amily 9 macng cecsions at enable them to work toward the foe curng vine tine trey have remaining ‘Compresenrive altative cae fencer oe require the expertise of varius providers 19 aceqwatey assess and treat the complex reeds of Sesously It patents apd the lis. Lencersnp, calaboraton, coor rato, and Consmuniston are key elements for efectve tegration of these dacipines and services (NCP 2004) “The NCP key elements of pllatve cae are desenbedbelow~ Patent popuston The population served ieludes patents of lager expereneng 3 dbil= lating crane or ifeshretering les andor. ry. Pare ad fry centered care ‘The oniquener of exc patent and family respecte, and the pate ns farmy conte he unt of ere. The ily = defines byte patent fn in the eave of minor or tose thot cecson-masing pei. by Grete sropates Tr ths conte family members may be related of unrated tothe putene they are naviduls who provicesippert and with whom the Patent has sgnfeant relatorstip The care pln is determined by the goals and preferences ofthe patent ane fai wth syppor ane guidance n decor mating om the hea Tong of alive cre Palate care icealy Degas athe te of gnosis of fetreterng oF debieating condition and continues rveugh eure or unt deat and rto ‘he fy bereavement period Comprehensive cre Pallatve care employs » multismensiona atsessment to ientty and Feleve suferng trough the preverton or alleviation of 2c peyeho= logeal socal ane spiral dress ‘Care providers shuld reguary assis patients ané their families to understne ehanger n the patients cancion ane the impleatons of hse enanges ss they relate to ongong and ture care and gous f aged separ oh Ne ans Pres 8 a re ai fe Biya ene etn p28(QUALITY PRACTICE GUIDELINES 5 Palas carerequres the regula nd formal lnc! process af patient= appropriate acesement. diagnos, planing mterverions onstring and {Btoweup. feerdscinary tear Paliseve care presippres inition for snd provision of ited nary team evalstion and restrent in slated ates The plicve-cre {eam mut be ated in ear othe patient population tobe served. Pullsve-are teams maj be ogandedto nce ararge of professionals based on the services needee: They incuce a cove group of profesionas ‘rom mene. nrsng, an £0031 work 38¢ may cde some combine ‘on af olunteer coorinators.berewementcoareator cpl >} ‘hologs,pharmacitsnarsng arsitans and nome ateneante Geshe {peech and anguage asthologts, physical occupaora ar ply. music re chide tyrants, case managers, and ines volunteers, ‘Artertin to ef of fering ‘The arimary goa of pallsve cre eto prevent ardrleve the many and varous burens impose by dseases and ther rete and consequent feller inessing om ane other syratoms ans peycholageal dress. censure fective commarication sil are reqs in pallatve cave, These incude developmental appropriate and eflecve sharing of nformaton, actve Uscering derermination of gels and preferenees, asitance with media deciionsnakng and elecve communication vith alindiwérals oes Inthe care of patients ane ther mies, Sln care ofthe hing and the bereaved Palate care spect ears ut be knowledgeblesbovt progenies: ‘on, sigs ane symptoms of imminent ceath, and the assocatee care 2nd fopportneede of patens and ther fiir belore and afer the des ineucng pespecic poy and prycholagsl syreromes, opportune: for growth: normal ane sbertan ret, and bereavement processes, Conc of ear ars stings Palin care i integral to 1 neath-care devey sytem cetsng® (hoso= "al emergency department nursing home. home eae. assisted nrg ac ‘es, oupatere and nontrastionlemaronments seh ser00) “The pala care tex calaborses oth prfesvonat sng informa careers in each of these stings to ensure Coordination. communes Son!and contuty of pallatve eave acess isttuona and home cre Eeting: Proactive management to prevent crises and unnecessary taster are important octcomeso! palate cre Equtabie acess Pallatve ere tears should work toward equtable access to pallatve care across al ages and patient populasons. ali agnoste categories, a. heseeare exing.incedng ru commontes, and repels of ace hii. sen preference, or ity py.6 CHAPTER Definitions & key elements “Table 1.4 National Consensus Projets domans of quay pllsive ae Demin Pepe pes ete Demin 5 Psehlogea an pacha pes of re Demin 4 Soe ecu are Daman 5: speaualrajus extent apes of ee oman 6 Cua pects fre Dean 7: Cre fry dye st Denn: he sei pees re Fees wn pen fom be Neal Coma Fore nee Exes Pao Ca Sea np ality asessmen and perfamance improvement Palate cae services should be commited to che pursit of excellence se high eualy of cre. Determination of gly requres the deveon- tment implemerttion and maintenance ofan elective qualtysterament he performance mprovernen program ‘The reqoresregoar ane sitenave asetament and esaluaton ofthe process of care and mneatrerent of extcomes ng vale insr= ment for dts calection “The nstute of edcne hs identi i ms for quality hest-esre delvery. They clude Oe folowing 1S Tivey—devered a the rit patent at the night sme 1 Puuertcentered—bisec onthe goal and preferences ofthe patent re the amily «+ Benefeal nor ffecsve—deronstablyinfuencing important patietovtcomes or procenes of are lke to ceriable outcomes «+ Recerssie ana equtabie--ivaisbe to all who ares need ane who ould bene Krowiedge- and evidencedbased 1 Eient and cesigned to meet the acua needs ofthe patient and not wae of resources ‘The NCP bie iensfes eight domaine a the framework fr spec cbn= al pracice gues nes regarding profersionabehawor ind rere celery (Gee Tale 11) ach comain followed 9y Specie clea practcegucelines regarding professions behavior and stoves delvery 2 jisufeatons,sipporting and carving statemens and sugested ‘itera for aereveng whether the ented Eoectaton has been met 3, References that support these recommentions 4 Care examples 9 lstrate he operstonalzation ofthe domaine inte preee(QUALITY PRACTICE GUIDELINES \Whte most af the key aspects are elicusedn Chapter? (Spits sues in pallave eae 253) a more comprehensive resource salable vvnsatnsleanseneusprojectorg References NOMA 9 ARs seep crea 2. Wed ah wines) WHO dion of pian ar Ratt Novara orton hows isonet >. Ror Gaston Po Sins Ce IP) 5 CPt an [ey es oe Sad ate rarer 8 femme 7This page intentionally left blankChapter 2 ’ Symptom assessment Marvin Omar Delgado Guay, MD Sriram Yennurajalingam, MD brodution 10 Symptom assessoent 1 Insoumenss fr te assessment of progress and fnction 13 Conelusan 1? Ciel pears 1710 cHarteR2 Symptom assessment Introduction Symptom sssezimet is very important beeaure symptoms direct feet patent dates level qualty of fe (QOL), and sural” Symptoms Berelated to the diese uel weatment and comorb linesses Mute pysal psyerologal and sptualyditresng factors ect (QOL amulcemensonal constrct with specie emotonat pays ane socal pects (Fig 2) “The ear ager of cncer are arocated with considerable symptom The ympions ane ther nevference with Lie iereae with meresng cancer sage, pounbly reflecting tumor burden ane wresimest comics {ons Ths symptom burden cecreases patents QOL® Sympoms ec bude not necessaniyeetemie patens’ QOL” Tr elie praace. patents presert wth multiple symptoms that require smulaneous assessment and management. Coins must have $n ofective asressmens strategy hat repos the erexkmens gale andthe certs whe. Thr chapter desenbes some ofthe instruments vied to asess symp: toms and certin condtions, such a dln patents with advanced ance whe rege pallatve ere Fig 2.1 Fc assactd wen gato npn win seanee anceSYMPTOM ASSESSMENT. 44 Symptom assessment There it no gold standard for sessing symptoms in pallative cre patents Assessment toa ennte cnieans to ently many mare symp~ for than those found with sempleuntuctued evalustons* ‘Symptom sisessmen:nstrenents sed nthe cia eng nle the Egmonton Symptom Asessmert Scale ESAS), ce Menara Symptom Asserment Sexe (HAS), ane the Symptom Disree Sele (S05) “The FSAS ie ures to seert 10 common symptome (pan, tive rausea, depression. anviely.crowsines. shortness of brexh appetite. Feeing of wel-being and ater symptoms [eg sleep eatursnees) td feeling of wel-being experienced over the past 24 hour by a ‘er patents or patents with ether ehvonteilneses® Using the ESAS putes rae the stensty of thei symtoms ona sale of 2010, wih Grrepresensing "no symptom’ and 70 reprerenng he "wore posse sympton” (Fig. 223) “The ESAS, which widely used i pallatne care. relble in assessing cancer paints and has eral conten, eneron vail, and concur Feotvaldy® Paints complete the ESAS abouts minutes Ts ese of use tnd sal representason rake the ESAS an elective ane practi bedside foal hat alan: hethrcre providers to trac paterts symptoms over ne interns often, carton ane serpy recpone’ (F225), ‘Ws the MSAS, patente rte the freqdney every, ne dress 80- ksted wth 32 physica ane prycholnge symptoms Becuse takes longer to complete than other atesrent tole the MSAS i mast ured foreseren purpose. “The shortsorm version ofthe MSAS, the MSAS-F, captures he pasiente ‘ated distress associated with 26 physical proms ad the frequency of 4 psyevolgia symptoms” The concensed SAS (CM™ISAS), with po ‘ecer QOL ane tural information tat approxmately eqvalent (0 ‘at afthe orp MSAS, canbe completed 20.4 minutes! we i ai a} CP EO LL ES ES ten F224 cnc Syn Ase sa 9 Kept ah ‘tito, The part oad Seoced rode pu ne wae and oer Pre ane enatonay ares mane12 _charten2 Symptom assessment ne ae oe Fig. 2b ESAS sores ote sie paert 24 hours ae aesonan an mle ‘The SDS san aezessment instrument hat pate ue toate the inten= sty, requeney. nd level of eves atzoeates wth rine pyre and wo payholegeal motors” Many larger more compex symptom assesment tools have been developed for ene esexeh use Research nsvuments may ier from ‘hose used in cineal practice’ Repdless ofthe typeof scale Wed, 008 symatom asessmene precedes efectve symptom reat entINSTRUMENTS FOR THE ASSESSHENT 43 Instruments for the assessment of prognosis and function Functional satus, an independent precitor of survival. must be consié- free nen planing patient are 0 3 hore, hospi, or hore ® The most freeventy used performance statue asesment sce in oncology "Cestment and researe are the Karoly Performance Stats (CPS) scare ane he Easter Co-operatve Oneoly Group (ECOG) scare £20 tel ins relable pogrostc ave’ ‘The Karotsy Perormance Satus (KPS) score enables physicians to céaaly pent secoreng to ther fnctonal impairment. Tht case {ion ean be use to corpare she eflecivenent of ferent erp re to assess prognosis rial patients For many pales 7 Scots hess, slower Kamothy scare ideates lower survival The Pallasve Performance Seale (PPS) 's a progneste cool used in palanve Care piients which corelter win KPS See Chapter 25 (Promesvcstion| inpallatve care. 298) fr deta, ‘The ECOG score measures the intensity wih whch eancerafects patient ely bung silver" The ©COG vale anges rm (fly seve hovresetans) to (ees). Prysotherapsts ane waned nurses use the Edmenton Functona ‘Asetsment Tool to determine fanclonl performance and esate other factors that coneribute te functional impairment pales with adrancee cancer, such a5 commurcaton aly, mental su, pan level and y= prea mtensy "| "The Funcliona Independence Messer can be ured in research ste igs to sues the funeionl status of patents wih advanced cancer” “The Functional Independence Measure includes 18ers that ar wed to cenlunte patents sphincter contro, seltare, moby lacometien, om ‘uneston ang socal comntion ‘Actes of aly ving (ADL) scales are use ro evaluate pation level of physi impairment Specicly the Kat ex of ADL steerer ey Selvtes a exing Sahing renng toletng vant (a. bee to cha) ‘The nstramental Aves of Dally Living (ADL) questonnare assesses how well pauents perform complex if activites, such as Ughthousework lainey, meal preparation, tansporaton. grocery sopping eephone Use mediation management. ane money management’ The ADL ques ‘onraire Reps ahysicans Wentfy cognitive partment. physical Uma Sons davening symptoms ard relstes cies prosiems patients sévanced cancer. Assessment of physical symptoms and complications Pain Clncane shou comprehersvly erst alles wih sevanced cancer ‘sho preser wth pan ane rested symptors (sucha tg, cepression. Slee dsturzaree) (Tale) When evans tae henistores of ener patents ho present wth pin they should ask for the ication r= eters, and nanty ofthe pa about ary varazon Inthe pan Wi“4 ‘cHarTER2 Symptom assessment “Table 21 Comprehensive palate cave assessment of revanced cancer patients wth pain ad other symptoms esi fly ng ADL) inerumeral ace of aly We (HO Frys maton: ret {oan (igi, ores taste, depen non, (owns conp) Frere yrotemsaneey aor conser Famiyearegves ress, Det Spits ass edesion itor 3 ype ea ‘Race: chemotherapy ander riothney "era horeorta a ces settee Character oeton and iarateyPecoranee Sale Eten (Certo Snipe Group Se cores ‘ADL aesmentombing reine re Charesng etn artigo dt (ae an ace conealing unary se es scare ge tale wan iW assesment ih nouewar preprng ea arg redo Repair receres rates ing the (eepote magne money “dpa Spon Aner tn + Abani aigrhy Ceoipon snl bel Sct (eoner aban! ompice trap) ‘ty dor daprenion SAS) ‘usoment for tenenepver dress Sing te oer * Materiel Asn Sle (rion, = Perl Ste Exams (SE) * Confasan Asesemet Mabe (CAM) *spmTathisery Tra. Fours hy emitINSTRUMENTS FOR THE ASSESSHENT 45 change of movement or tme ofthe dayrhow the pan affects the nan [ADLS andthe posuble cuses) of tre pan'* Using the ESAS, elneans {a cently several potential underlying Symptons and beter understand She causes ofthe pater pain. “The CAGE queronare canbe uses to sereen patente wih srances iretter ane pa for sleoho sours" The CAGE questionnaire consis of four everione 1) rave you eve felt ha you should Cut cown on your 50% ‘ecupancy. and 3 indeatng complete stool eccupancy ofthe lumen, The imultve ‘eonspaton scare” can range fom 0 to 12 A Score af 7 oF tore inéestes severe consipston ‘Malignant bowel obstruction In eater of mal gant bowel obrrction 2 commen and treting occur. resce partly in pavents wit» gustreintesinal andlor gynecloge ‘Gcer? iis portant to caretly Sses the patient and te posse ‘Gutes ofthe obsructon to ensure that the pavent does not requ ferergent surgery Computes tomography (ET) can be used t0 beD Dhyseans dee whesher a surge or medal approach woud be mare [ect to reieve owe oberon” Dyspnee Dysprea is cefined as dieu labored, or ureomvorable breathing 3s experienced bythe patient" The goid standard for dagnosing dyspnea the patent's setreport because dyspnea sa subjective symptom that has ratile potencal causes an the cchypea and degree of oxygen sare flonan ete seer blood far resus ght not reflect Se cree tae Syapnes eases TDyupnen can be aseted using mere oral or val analog scale. Insrument wed to asess the incensty of dspnes ncud the Suppor. Team AsvesimentScle® and the ESAS However, no single scale can accuracy reflect she fareaching affects of brestierinest on patents and Ser fmiy or crepvere Paton with hgh eyrpnea scores have 3 poorer QOL than patents with low dyspres scores 3s arvessee by 0-10 seventy sale (ef. ESAS Gyspnes sale).INSTRUMENTS FOR THE ASSESSHENT 47 Delirium “The main fesures of dlnum, 2 Vasiet ane potently reverble die order of cognition and attention, ares Rectuning course of sete-onet Fecucee sersorum, attention cefct and ean or perceptual dstur- bances® sents with advacee cancer eit caesar i ‘ves and frequenycompleates ené-o.ife cre" “Assessment instruments with acequatepaycromerc properties, such asthe Ma-Mental Sate Bamnaton (MMSE ongraly ured fore dng hoses of ements) the Conon Assessment Method (CAM). andthe Memorial Derm Assessment Sele (HDAS), fate the diagno of eirum and impose relzvey lice burden on patents" “The MDAS, a valéatec tool Ween palistve care, measures the sever- iy of delirium and therefore captures Behavioral manfestatons a wel 5 opie efct:” The MDAS messures relive impairment swarenest. fnetation shavzterm memary. gt span steneon epacty, organiza onal thing perceptuat daturbance deluvons,prychometor act ne sleep-wake eye lems on the MDAS are rated rom 0 (core) 3 (Gever) witha moximum pessbe scare of 0. ‘Atoul MDAS score of 7 yes the highest senstvty (98%) and spec- 9 969 for esiriom éagnons™ Assesment of eep daturbance Sleep disturbance (SD) negavely affects QOLY Sleep deprhaton, 29 Unde-eperted problem among autiests wth advanced cance, heightens physica poyehologeal socal and ecstenal suferng. emiishes cop Ing epachy and exacerates symptoms such 25 pan and dscomfor by increasing the pereved ive of ines covery” ‘Sever tose have been used to ealuste SD in nor-cancersetnge however, ere tna valested single em sereenng sale to ently SD in patatve pulaton ‘The Pusburth Slee> Quay Index (PSQH). which measures sleep qul- inyane patterns canbe sed the research or cles setting” The SQ] tferentates "poor ‘fom “good” sleep oy measuring seven ares Subjec- five slee> qualty sleep tency. sleep eration habval sep efciney sleep estrbances, use of sleeping medication. ane daytime dstnetion lover the prevaus month Patient Fate ene af hese seven areas on 0.0 ale: the maximum combined sore 21 ‘combined score of or more nevates3por”sleepe” (ea patent iho experiences seep estrbance). The SCI ean be use to provide 29 inal seersmentanciorongong comparstive messrerent in abe {Gre vetinge PSQI Hae igh vale, els, ane internal onastency”| Assessment of emotional and spiritual distress Assessment of ensety and depression Although mood dsorders such as éepresion and axety are among the most prevalent psyeatielneses experienced by pavers with adrancee {Greer move eroreers ofen remain ineereagrored thie nder- ‘cested” However sever. exsytonidmnierseleporong asesre'® “als have been created to improve the securacy of ereening lor) ne depression”18 _cHarten2 Symptom assessment ‘The Hostal Ansty and Depreson Seale (HADS) is br, ell adriniteredserenin tal uted to mensre patent poycholageal i (Were The HADS ie senattve to change both dung the courte of dese nein response to medical and psychological inervenions. The HADS ons of two subscales compring 1 ems (7 for arsety and 7 for ‘epresin) Paver ures poms rele trate she degree of eter hey taperenced during the prevour week ‘The two susiesies are then scored separately. A score of 7 or less Indeates nomeses of aety andlor depresnon #10 Indates doubt Cases and 11-2 indeates dente cases Also. hae Deen proposed that ‘ores of 1 or 1S or more indste revere carder, ‘The PADS hae goo relabsty and adi eresng symptom sever= iy. arsety drorders ane ceprerion somatic psyche 3nd primary {Gre piensa wel athe general popustion Assessment of situa and reliiouness Spirtualy and reigouines, which an fluence coping strategies and {GOL mast be cons dered when evaluating terminal il patents Sprtia, Pas can occur piers wth chronic or Seite pan andwith other Dry= {Gland peyerologel symptoms. The ne between arent and ner ‘ention blared There so widely 2eceted measure of sptualty. Although simply Inquring about patient religous or spintal coping may provide the pert with an openng for further exploration and valaston, aeeie- fren: toes can abo be used to examine asters spirtual history engage paients in calog. deny porsble seat of concems and nvertgse the eee for providing resourer such ae rele to.3 chapla™ ar upp0r Froup For example, Puck's and Rome's Fath, Inporascellofuenee CCommansy and Address (FCA) assessment tol canbe used to eluate prune spritaity and relgqusness” The FICA qvestonnave dudes fuerte thi explore each ofthese area (eg. Whats your fat How Important ir Ave you part of» reir coriminty’ How woule you ce me your provce- ta acres there eter > your care!) ‘Although orgy developee to ses primary cre pave spits, history, te FICK can be wed in any patient popton. The relative sie Blity ofthe approach has led to" ke adopton by many «levcane (cee {Chapter 21 for further deta). ‘Arothersprivaltyseressmen too, te SPIRITual Hitery qvstion- rae. exlors six domains the otents Spritial bei sytem, Persoral pinta, Integration within 3 spirtual eanmunty, Rivalzee practices re restctons,Impuesons for meses cre ane Terral evens plan fing? These sh dorains Ince 22 Mere that may all be Covered n Ute a 10 or 18 minutes or tegrated nto several nteriews Assessment of family stress and caregiver burden ‘he Zar Burce Interview rte mor wee referenced salen studs of eregverburder "Caregiver burdes iran alencompazing term ured to deserbe the phys, eralons, and faneal tol of prowding ereCLINICAL PEARLS 49 for ponte with advanced ilnesses. The Zar Burden hteniew has high Internal eonsteney (Cronbach s A= 034)" “The Bre Syratam laventory (BI. Trem stfreported symptom inventory ested so reflce te payehalopl symptom pater of 22)- chiatre and meceal patens ane caregvers, proves an overven of 2 ‘Greguers symptoms and ther nteny st Beet point n tina” ‘The Bl repors arofles rine primary symm dmensons snd tree obama of tress Each tems ratee on Spine sae Fanges frre 0 (hot stal") to 4 (extremely) “The epresion ane ansey subscales ofthe BSI are well esablshed ‘The approxmate complezon time for these tems is 5 minutes. Te inter- ra consteney eximare of ere two svoecslr are O85 (cepresson) 2nd Oe fans) Estimates ofthe consict vay of here rss aco sremtiseiary” Conclusion Caring for patents wth advanced ioeses voles releving cetresing physic payenosoca. and spiritual problems and enpowerng asters {ne ther amie to ren controle baancng the bereits Ane hE oftrexment ecogn ig these patient’ dstressing symptoms 36 multermensona complenes an wing appropriate and vated stestment tool help phy- $icate manage there mptoms to nprove patents’ QOL and cecease reper buréen. Clinical pearls «Mate desig syptoms dec afc patent lel! doves, Gor adr + Shea receing pilav ae prsent wth ile smptons that recur smlardou assent cf hese sympirs ad aaa «Fires steed nt ony appa gmptone ace phy eres bt efor yopoms tt ee emocorl an pal does References {een Dm Wah 80, Canc pa it arm pa ere fan se 2. Seine eyes a hes nate pn eng yten Nee cnaug see 2. Gamer Roper Finns, 5 te as rg ai uc far rcs strobe apes et tt «DiS baal ent ies Stone mpalite crepe reo a8 se Etat X Gtr Seer Hamlin (9, Te Edt § ‘eigen Even wed oe me Foe‘cHarTER2 Symptom assessment «rece tar eters mee 1. Gone ere §. eran Ma 8 Tle HB, The Mama Sytem tte fl nfm uated ay ve wr 1 Sng Hees ann. iar 0 hoa mon sent ars Enablers ptm amen Sate CA Ener ee SH Rt Sg CT Boet mp ss Ge Min i Age aig} Sa Aes pace ei sauge Hla atc karat Prema Sat eae ‘aly aaa er e- sa Frater oA vam (49 The ary Peta Sr canon furan seaioy marr ny Ces 8 1» Diet rd Tema na cy wets rebate, 4 i Te yf nm Ts pt ss Foci Se hac or? Ra eon nme 14 Bnei tren pew Pas ‘7 ben Hon Sea 95) Taga of bin eg pa wth ee ent a 0 Tee a se Fettnsngn tw ea mange gist ‘9. ba tbe ban ra po Spot oa Raoul thoes aa et a 20 EiGb hn Ref ama of har AC mee Png Ses Th em fe ey 22 fog pees Abaca © Yum 2), Cee en stv rbayent vt ion orent per Ree a an leet ek Eee ah grees on en) 1 Bul Das Sen 5, Spe cali atin cr Pot Hn nd nfo tner oe ashame vt a Lit singh we sy abn oe of Cates a Hiern poner. a Kaan lnc mean PG} MMe Su apa meted lng ‘ie copemt mest pwcte ence fa celeste! snewshedte Seating aun emer nt an Grr abn Cems cc ay a nt ve foeer eu € Wg kpromer Orne 50 Sap nd gay fn Pomtonar hts) Po cp eS Kap elt Most Be 9, mi Sap Ce es noe er pycisiep aeons top rt EP on ei ras pac panel eee 1-Day rn aor Apri pe trie ae ‘erste ies orem psn pw hl osSYMPTOM ASSESSMENT. 94 > pureLowan ng eam The of pean nd REE never BOO Hanes so br slow cnc ened pais ‘Novi pete ta 24 Bets Rr tn] 90 Ras of ns Sty crane Povtiics conan tous 27 Bers UX Masons N99) The Bt Soom bea into pe ra a easThis page intentionally left blankfe aed B Clinical decision making Henrique A. Parsons, MD Eduardo Bruera, MD Defeaton 24 Palatve care specfites 24 Endence aared medicine 25 Cliveal retonng 2 Oxteome cess 2 The festa approach 28 Clave pears 3024 CHAPTER) Clinical decision making Definition Cline! decison making tthe process uted by heath care providers to rake eineal adgrent and reximent deen Tme way = hie cee los in heath eae are made hasbeen flld of study for mare than 35 years, wth an extensive body of knowledge Deesion making heath cae i 2 process that involves dierent reasoning processes occurring 2 the same tine. ranging from the mos! ini and informa to the mar formal ane analy! Snes" The ar of Gecson makeng = me cine les i the correct balance besween formal informal cecsion mating stateges “The am of healthcare deisons m evel to determine which cone duct wil yeld the most favorable outcome ins specie stutton, The proces of ceciion macng includes two base phases (1) determining the possible outcomes forthe posible lkemative cnet, 2e 2) amazing the desirability of exes outcome? Palliative care specificities In patents receving pallatve care. decisions regarding the troduction of ew vestments or witndraval of arene exabishestherspies sre most tsauily Fequert Ar wth every mes! decison, palisve cae cecsone must Fflect the ethical principles of benefeence. nenmalefience, abut jstie an patent sutonomy* Tn parclar patent goss need tobe tke into consideration ane that ls way they need tobe ete very early n the relsonship. For earie. ddscasonsreqarengaevanee drecive, when en sfeantly ater the desrabity of eran outcomes, ut be underacen seni possble in sre course of Meshrentening deenses, rerpecive of te prosmity of the ene of ieEVIDENCE-BASED MEDICINE 95 Evidence-based medicine Defined atthe conscientious, expt n¢ judicious ure of cre best fevcence in aking eecsions about tre cre of eda pauent, the practc of evdence-bsed medicine actully mean the tegration ofthe Cineal expertise wih se bet avasbie evidence fom clneally relevant Feseareh conducted ving fod methocology.Risnot ther'or, he prac: ee of "wory tower" medicine, wth seit and wevangesbleuldenes re i certsiny oes not exclude one profesional: experi ‘The qulty of se formal eudenee from syramtic research an be cealusted by apnyng x ererion af ves of evidence, A summary a the levels of encence can be found in Table 11 “The recormendavon for or agaist an itervention can aso be cass fied in eves, using the “grades ofrecommenestion” shown in Table 3.2 Ineecvertions wih grade of recormmendsvon A nave good evcence for recommendation whereas those with grade D are not realy backed o> bysole wel-conductes research Ih the proces of eeci'on mating, Benefits, harms, and casts must be leaned As evidence-based approuch fundamental nis st te, 9 ven pssbe aerate conducts are pondered ane the detemation| of ther posse outcomes takes lace Table 3.4 Summary ofthe levels of evidence 1 Sart reve (A) otrdontae aioe ws RCTS) wth fomaperen® 1 Sr RCT wth row contac itera Lela 2 Syenase review of cobar eesee B Sng eobor sees f Oxncme reserh et? 2 Syerate review of zocor tices B Sr aseonvel study Lets 1 Peony escort eves oer open Theron = Bre vorions aor eg be NET el Tighe esters Rn ay er rh ov minten cogent sigs fons og gy oe seme See Cano end Mag CIN, pet Pay Crs Uy SSecrd put nat eona PH oe oem cae26 CHAPTER) Clinical decision making “Table 22 Grades of recommencition Datnkon Conran iev acer “Const 263 stds or extagen” tom vl ses ie sues or xtaplatons om eve 3 uses ie eicenceortroingyneeratet rinoresie Aer sanyo ‘Retin: edna te as oe amy npr Ro Sie Ct er Ene Band Men C4, ape Pi Crs Uy SSeur pain nat oana Pe SH, bl oem cane oon High-quality evidence isnot present for evey single clin! problems. Diferent degrees of cna! reasoning almost aways hive to take pace 5 order to cetemine the mor sable procedure Clinical reasoning Cnet reasoning the acta thought proces hat kes place in med {al deciion mating lt compres the combined ute of evidencetared medicine and other source of medal information, such she physica’ eerie Tors ceseripion of ever model of nicl enzoning referto Box 31? Al cine reronng modes righ be sppropratein erent sons. Box 3.1 Clinical reasoning models «+ Hypotheticodecuctive—inference based on preliminary fring: and mode by subsequent names «+ Rgorthmie—dagrosti o” therapeutic pathway based on infloxble «+ Pattern recogior—eombinstin of slot features determining agrons «+ Bastive—tine-consuinginserimiate accumulation of ets {Event drver-symptomane wearment and Frequent reevallatonsOUTCOME DESMABLITY 37 Outcome desirability “The secon bai step involved in medal ecsion mang tthe determ= ration ofthe desrabity ef an outcome, Tis determination has to one tier the flowng. "The potental bereft vs. the potent! harms of given inervencon Takes ino consideration ae for warp, se ets, 5s, 05%, 29d ingviualpreferences. «+ The resource aslabity Wen resource are ited, the eof interetions bent has to be weighed guint se con volved. Sometimes ether interventions with lower ost wil ring higher yl28 CHAPTER) Clinical decision making The five-step approach Palisve care requires an extensive ad structured assessment procedure are ese ped deesionsnakng approach is aviable However every Pallet unique apd the exact sue lave maght demand completly Fevent management ferent patents 'A practical approach Yor cecsion making thst takes ito account he patents epecicres = prevented in Tabie 33a will eure descr bes fh the sectors tha ltow ‘Step 1: sue identification and exploration Pants present to paliative cae with 2 multitude of sues that en turn wlgger new probiens. For example an infection mughtvigger oF worsen sites, dln pin and o&rer problems, or the presence of Iyperalcena he che vomiting section ane dlr. "The firs sep i Spry reatec wth the need for structured cnet azseriment in pallave care The securte determination of te er that affect the patient precedes te entiiestion othe alles of exch of these iss on the palent's quality of Ue ‘Several amples are denied » Table 34 “Table 33 The Step approuch Seep Actes 1 Wty oes cece onthe pent Fake ape of dana ofeach pect e ieee potent probes assocate ith he hterventon, 5 cs ere ln with te patent iy and eae ta ‘Table 4 Some examples of commen palltve cae stustions oars Frege. che pa sores ofbresth ppstone Derwdratan Detran myedona alan eve feral ire Delran, muses vr ue ees Lynotedena Pa ers. ably 0 nave Constpson Fam musa vrtng ace Hrmwciamis ‘Sedo, coo dtu nae vr. Folge Ibi to nave pr, tremble, fcr reaper econ et beng ernie