Challenges and Choices for Patient, Carer and Professional at the End of Life: Living with Uncertain


I The dying person and their loved onesAttitudes to death and dyingWhat makes a good death?Everyone has to die their own death, even meShared humanityReconciliation with oneself and with othersComfortable, peaceful, free of pain - an ideal death?Being preparedSome assumptions which colour our perceptionSelf-determination and longevity set against euthanasiaLiving with unpredictabilitySense of timeLooking forward to an unknown futureThe question we cannot answerWhy do we have to suffer?Limitations of the scientific methodThe story behind the patientFears, stresses and strainsBeing a burdenDeath, a defeat?Learning from experienceThe end of life - people's experiencesPatient experiences: a mixed bag of feelings and ordealsLossTraumaPain and sufferingRemissionCarers’ experiences: sharing or mirroring the patient’sProtection of self and othersWhat will happen next?Hope and courageCuriosity and acceptanceII Medicine and care at the end of lifeMedical intervention, a life saver or a life changer?Quality of life and death, the purpose of medicineWhat do we mean by quality of life?How do we assess quality of life in another person?From quality of life to quality of deathProfessional identity and evidence-based practiceIllnesses and ill peopleStandards, options, recommendations . . . and much moreWeighing up the benefits and harm of a treatmentA technical and an ethical actWhat makes medical intervention right or wrong?Accountability, liability and riskMatching patient's motivation and treatmentEuthanasia and assisted dyingEuthanasia, assisted dying, palliative sedation . . . what is it?Situation in the countries we consideredUnited KingdomSwitzerlandThe NetherlandsBelgiumWhat is the effect 15 years on from introducing the law?Inconsistencies in the lawDue care and accompanimentA slippery slope?Difficult decisionsPressures, power and controlNo euthanasia ‘on command’Decisions have ripple effectsPerson-centred careCommunicationSensitive medical communicationAdvance directives and advance care planningEnd-of-life conversationsFacilitating attitudesListeningRespectHonouring existing bondsAutonomy does not exclude dependencyThe palliative approachThe whole family is the patientRelief from pain and sufferingPresenceFocus on life and relationshipsHospice as a toolboxConclusionPost-script: Lessons from Covid-19Context of chaos and uncertaintyChanged relationships with patients and familiesEnd-of-life careTriage and advance care planningBereavementCaregiver (di)stress and supportBoundaries and self-careConclusionGlossary