Palliative Nursing: Across the Spectrum of Care PDF
Preview Palliative Nursing: Across the Spectrum of Care
P1:SFK/XXX P2:SFK BLBK147-Stevens February12,2009 6:59 Palliative Nursing Palliative Nursing: Across the Spectrum of Care Edited by E. Stevens, S. Jackson and S. Milligan © 2009 Blackwell Publishing Ltd. ISBN: 978-1-405-16997-4 i P1:SFK/XXX P2:SFK BLBK147-Stevens February12,2009 6:59 Palliative Nursing Across the Spectrum of Care Edited by Elaine Stevens Susan Jackson Stuart Milligan A John Wiley & Sons, Ltd., Publication iii P1:SFK/XXX P2:SFK BLBK147-Stevens February12,2009 6:59 Thiseditionfirstpublished2009 (cid:1)C 2009byBlackwellPublishingLtd BlackwellPublishingwasacquiredbyJohnWiley&SonsinFebruary2007.Blackwell’spublishing programmehasbeenmergedwithWiley’sglobalScientific,Technical,andMedicalbusinessto formWiley-Blackwell. 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Designationsusedbycompaniestodistinguishtheirproductsareoftenclaimedastrademarks.All brandnamesandproductnamesusedinthisbookaretradenames,servicemarks,trademarksor registeredtrademarksoftheirrespectiveowners.Thepublisherisnotassociatedwithanyproduct orvendormentionedinthisbook.Thispublicationisdesignedtoprovideaccurateand authoritativeinformationinregardtothesubjectmattercovered.Itissoldontheunderstanding thatthepublisherisnotengagedinrenderingprofessionalservices.Ifprofessionaladviceorother expertassistanceisrequired,theservicesofacompetentprofessionalshouldbesought. LibraryofCongressCataloging-in-PublicationData Palliativenursing:acrossthespectrumofcare/editedbyElaineStevens,SusanJackson, StuartMilligan. p.;cm. Includesbibliographicalreferencesandindex. ISBN978-1-4051-6997-4(pbk.:alk.paper) 1.Palliativetreatment. 2.Terminalcare. 3.Nursing. I.Stevens,ElaineM.,1960- II.Jackson,Susan. III.Milligan,Stuart. [DNLM:1.NursingCare–methods. 2.PalliativeCare–methods. 3.NursingCare–trends. WY152P16742009] RT87.T45P41 2009 616’.029–dc22 2008039844 AcataloguerecordforthisbookisavailablefromtheBritishLibrary. Setin10/12.5ptPalatinobyAptara(cid:1)R Inc.,NewDelhi,India PrintedinMalaysia 1 2009 iv P1:SFK/XXX P2:SFK BLBK147-Stevens February12,2009 6:59 Contents Contributors viii Foreword xiv Introduction xvii PARTONE ADULTPALLIATIVECARE SectionOne HistoryandEthosofPalliativeCare 1 Thehistoryofpalliativecare 5 StuartMilliganandShirleyPotts 2 Definitionsandaimsofpalliativecare 17 ElaineStevens 3 Providingpalliativecareformarginalisedand disenfranchisedpeople 35 JohnAtkinson SectionTwo PalliativeNursingAcrossCareSettings 4 Palliativenursingcareintheacutehospital 53 PhilipSaltmarsh 5 Palliativenursingcareinthecommunity 72 WendyWesson 6 Palliativenursingcareinnursing andresidentialcarehomes 86 CarolKomaromy 7 Palliativenursingcareinhospices 99 HelendeRenzie-BrettandDeniseHeals v P1:SFK/XXX P2:SFK BLBK147-Stevens February12,2009 6:59 vi Contents SectionThree PalliativeNursingCareforPeoplewithSpecificIllnesses 8 Palliativenursingcareinheartfailure 115 MargaretKendall 9 Palliativecareinchronicobstructivepulmonarydisease 125 SarahRussellandVikkiKnowles 10 Palliativecareforpeoplewhohavedementia 142 StephenD.M.Smith 11 Palliativenursingcareinotherneurologicalconditions 156 Huntington’sdisease 156 AnneThomson Motorneuronedisease 164 CaroleFerguson Multiplesclerosis 175 RichardWarner Parkinson’sdisease 181 GeorgeKernohan,FelicityHassonandDorothyHardyway 12 Palliativecareforpeoplewithendstagerenaldisease 204 HelenNoble 13 Palliativecareissuesforpeoplewithcancer 220 SusanJackson 14 Palliativenursingcareforpeoplewithhumanimmunodeficiency virus(HIV)andacquiredimmunodeficiencysyndrome(AIDS) 241 MayMcCreaddie PARTTWO PALLIATIVECAREFORCHILDREN ANDYOUNGPEOPLE 15 Thehistoryandethosofpalliativecareforchildrenand youngpeople 257 ShirleyPotts 16 Challengesofprovidingpaediatricpalliativecareinthehospital setting 269 JaneBelmore 17 Children’spalliativecareinthehospiceandthecommunity 277 Elizabeth-Anne(Libby)Gold PARTTHREE EDUCATIONANDRESEARCH 18 Palliativenursingeducationandcontinuingprofessional development 291 ElaineStevens P1:SFK/XXX P2:SFK BLBK147-Stevens February12,2009 6:59 Contents vii 19 Palliativecareresearch 312 StuartMilligan Index 325 P1:SFK/XXX P2:SFK BLBK147-Stevens February12,2009 6:59 Contributors JohnAtkinsonisacommunitynursebybackground.OriginallyfromLondon he has lived and worked in Scotland since 1984, achieving all of his higher educationduringthattime.Hisworkhasmainlybeenwithmarginalisedpeo- ple:thehomeless,peoplewithHIV,prisonersandthosewithdrugsproblems. Before coming into academic life he was Health Care Manager at HM Prison Barlinnie.Since1999.hehasworkedattheUniversityofPaisley(nowtheUni- versity of the West of Scotland) as a Senior Lecturer and now Professor and AssociateDeanforResearchandCommercialisation.Hehaspublishedwidely includingacollaborativeventurewithotheracademicsInterdisciplinaryResearch: DiverseApproachesinScience,Technology,HealthandSocietypublishedbyWileyin 2006. Jane Belmore has worked in paediatric oncology for the past 20 years in the RoyalHospitalforSickChildren,Glasgow.Shewasappointedasthefirstpae- diatric Macmillan nurse in Scotland in 1995 and now works as a paediatric oncologyoutreachnursespecialist.JanewastherecipientofaFlorenceNightin- gale scholarship in 1998 and visited North America and Canada looking at their paediatric oncology services. Jane is a member of RCN paediatric on- cology outreach nurses’ group, a member of the steering committee for the MCN for children and young people’s services in Scotland and a member of the recently formed Scottish children and young people’s palliative care network. HelendeRenzie-Brettqualifiedasaregisterednursein1985andspentmuch ofherearlynursingcareerworkingwitholderpeoplebothwithinthehospital andcommunityenvironments.Since1993,shehasbeeninvolvedineducation andstaffdevelopment,withexperienceofplanninganddeliveringprogrammes withinarangeofsettingsincludingtheNHS,HigherEducationandtheinde- pendent sector. Helen is currently the Head of Education at Dorothy House HospiceCare.Herparticularareasofinterestincludeolderpeopleandendof lifecare,practicedevelopmentandstaffdevelopment.Helenisamemberofthe RCNandeducation,researchandolderpeopleforums. viii P1:SFK/XXX P2:SFK BLBK147-Stevens February12,2009 6:59 Contributors ix Carole Ferguson trained as a general nurse in the mid 1970s and then as a midwife. She specialised in genetics then health visiting. Working in genetics againintheearly1990sCarolelearnedaboutMotorNeuroneDisease(MND),in 1994changedcareerpathtoworkwithMNDpatientstheirfamiliesandcarers. Carole has now worked with MND patients and their families for 14 years, closelyassociatedwiththeScottishMotorNeuroneDiseasethathasfundedthe postsinceitsinceptionin1983.DuringthisperiodCarolehasgainedawealth of knowledge not only of MND but also of the importance of good palliative care.CaroleisamemberoftheRoyalCollegeofNursing. Elizabeth-AnneGold,(Libby)isfromChildren’sHospiceAssociationScotland (CHAS);sheisDirectorofCareatRobinHouseChildren’sHospice.Shehasbeen workingatCHASsinceRachelHouseopenedin1996.RobinHouseisScotland’s second children’s hospice and opened in 2005. Libby qualified as a children’s nursein1986andageneralnursein1987.Sheworkedinadultmedicalnursing foranumberofyearsandduringthistimegainedaPostGraduateDiplomain Palliative Nursing Care. In 2005 she completed a Masters Degree in Nursing. LibbyisamemberoftheRoyalCollegeofNursing. DorothyHardywayqualifiedasaregisterednurseintheBelfastCityHospital in1979andhercareerhasinvolvedexperienceinhospital,communityandalso workinginthevoluntarysector,inpoststhroughouttheUKandNewZealand. ShewasappointedtoherpresentpostofParkinson’sDiseaseNurseSpecialist with the remit of palliative care in 2007. This is a new role and she has been employedbyNorthernIrelandHospicetoidentifythepalliativecareneedsof peoplewithParkinson’sdisease,andtoestablishaservicewhichwillrecognise andsupportthepalliativecareneedsofthesepeopleandtheircarersthroughout thediseasetrajectory. Felicity Hasson is Senior Lecturer in the Institute of Nursing Research at the UniversityofUlster.Shehasundertakenanumberofresearchprojectsexploring thepalliativecareneedsofpeoplewithnon-malignantconditionsandexplor- ing the role and preparation of unqualified assistants (commonly referred to as health care assistants) in clinical and community settings. She is currently involved indoctoral research intotheroleandimpactofthehealthcareassis- tant upon nursing students’ clinical learning experience. She is also member of a number of ethical committees and is a reviewer for a number of journals includingJournalofAdvancedNursing,QualityandSafetyinHealthCareandNurse EducationToday. DeniseHealsisaregisterednursewithaninterestandconsiderableexperience in specialist palliative care and more latterly education. She is an Education FacilitatoratDorothyHouseHospiceCare,arolewhichincludesworkingwith a variety of agencies including Primary Care Trusts, Acute Hospital Trusts, SocialCareOrganisationsandtheindependentsectortodeliverpalliativecare P1:SFK/XXX P2:SFK BLBK147-Stevens February12,2009 6:59 x Contributors education. Denise’s professional interests include the development of practice intheareaofpalliativecareincarehomes,peoplewithlearningdisabilitiesand thosewithdementia.DeniseisamemberoftheRCNandeducation,ethicsand palliativecareforums Susan Jackson works in a combined role of lecturer in cancer and palliative care within the School of Health, Nursing and Midwifery of the University of West of Scotland and education facilitator with ACCORD Hospice in Pais- ley. Within the School, she is programme leader for the Post Graduate Certifi- cate in Cancer and Palliative Care and also takes a leading role in the deliv- ery of the undergraduate cancer education provision. Within the hospice she is the Chair of the Clinical Governance Education and Training Group and has the responsibility for provision of in-house education and training. She has many years’ experience as a Macmillan Oncology Nurse Specialist and has maintained her interest in the area of haematology–oncology and lung cancer. Vikki Knowles has been Respiratory Nurse Specialist for 18 years, and is currently working for Surrey PCT and Asthma, UK. Within Surrey PCT she is developing a community multidisciplinary respiratory care team to sup- port patients across primary and secondary care. The team cares for patients with chronic respiratory disease aiming to avoid unplanned emergency ad- missions and supporting early discharge from the acute sector. The team pro- vides chronic disease management within nurse-led clinics, pulmonary reha- bilitation, palliative care and home/telephone support. As Clinical Lead for Asthma UK Vikki is responsible for providing clinical leadership for the or- ganisation and supporting Asthma Nurse Specialists running the advice line service. Vikki’s main interests include management of COPD with particular emphasis on palliative care. She was a member of the group looking at man- agement of end-stage respiratory disease as part of the work on the NSF for COPD. Vikki is also a Committee Member, Association of Respiratory Nurse Specialists MargaretKendallhasbeenMacmillanConsultantNurseinPalliativeCarefor NorthCheshiresincein2001,althoughherclinicalcareerinpalliativecarebegan in 1989 as a Macmillan CNS in the Merseyside area. Since 2003, Margaret has beenIndependentNursePrescriberandholdsoutpatientclinicstwiceweekly. She has contributed to consultations on the nursing perspective of Palliative CarefortheRenalNSFandtotheworkingsofNationalPrescribingCentreon thesafedisposalofControlledDrugsintheCommunityfollowingtheShipman Inquiry. Margaret has a place on several National Committees including the RCNPalliativeNursingForumandNICE.Margarethasgivenevidencetothe Committee of Safety of Medicines regarding the further expansion of the for- mularyforIndependentNursePrescribers.ShealsositsontheEditorialboard fortheEndofLifeCarejournal. P1:SFK/XXX P2:SFK BLBK147-Stevens February12,2009 6:59 Contributors xi George Kernohan is active in health research with interests in palliative care, healthtechnologyassessment,evaluationofinnovationinhealth,healthinfor- maticsandcomputing.HechairstheresearchgroupatNorthernIrelandHospice Care.HeworksonuserinvolvementwiththeNorthernHealthandSocialSer- vicesCouncil.Heteachesevidence-basedpracticeandadvancedhealthresearch atthepostgraduatelevel.Heholdsacombinedsciencedegreeandadoctoratein orthopaedicresearch.Hehaspreviouslyworkedwiththe(NHS)Researchand Development Office for Northern Ireland. He is currently Professor of Health ResearchwithUniversityofUlster. CarolKomaromyisHeadofDepartmentandDirectoroftheHealthandSocial CareprogrammeattheOpenUniversity.PriortojoiningtheOpenUniversity, she worked for many years in the NHS as a nurse and midwife. Carol has published in the area of the sociology of death and dying and, more recently, extended her research into birth and death, focussing on the way that parents and professionals cope with stillbirth and neonatal death at the time of and shortly after death. Carol is the course chair of the Open University’s popular course,‘DeathandDying’. May McCreaddie is Research Associate in Nursing Studies at the University ofEdinburghandapart-timedoctoralstudentattheUniversityofStrathclyde. She is the Acute and Supportive Care RCN Scottish Board member and an ex-executivememberofNHIVNA.Mayhasworkedinavarietyofsettingsin- cludingclinical(medical,surgical,infectiousdiseases),research(e.g.needlestick injuries,sexualityneedsinHIV,andHCVpalliativecareneeds)andeducation (e.g. Education and Training Manager for the Greater Glasgow Bloodborne Viruses programme). She has undertaken development work in Romania and established an HIV nursing course in Chennai, India, for which she won the RCN/NursingStandardRobertTiffanyInternationalAward. StuartMilliganoriginallyfollowedacareerinbiologicalresearchandachieved his PhD degree in 1986. However, the bulk of his working life has been spent as a nurse, firstly, in general surgery but since 1993 in hospice and palliative care.HeiscurrentlyjointlyemployedbytheUniversityoftheWestofScotland (asLecturerinPalliativeCare)andArdgowanHospice,Greenock(asEducation Facilitator).Stuart’smainprofessionalinterestisinthetherapeuticrelationships whichexistbetweenhealthcareprofessionalsandthosetheycarefor.Hecon- ductedhisMastersresearchon‘TheAttitudesofHospiceNursestoSpirituality’ and has also written articles on ritual and symbolism at the end of life and spiritualcaregiving. Helen Noble has experience with renal patients dating back to 1990. In 1995 shecompletedherdegreeinnursingandadiplomainmanagement.Following anappointmentasModernMatronofRenalInpatientServicesshetookonthe role of Senior Clinical Nurse Specialist, Renal Supportive Care, and has been
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