Presentation on theme: "Palliative Care Overview And Concepts"— Presentation transcript:
1 Palliative Care Overview And Concepts Mike Harlos MD, CCFP, FCFPProfessor and Section Head, Palliative Medicine, University of ManitobaMedical Director, WRHA Palliative CareMedical Director, Pediatric Symptom Management Service
3 What Is Palliative Care? Surprisingly difficult to defineNot defined by:Body system (compare with dermatology, cardiology)What is done (compare with anesthesiology, surgery)Age (compare with pediatrics, geriatrics)Location of Care (compare with ER, critical care)Any illness, any age, any location…
4 What Is Palliative Care? (a personal definition)Palliative Care is an approach to care which focuses on comfort and quality of life for those affected by life-limiting/life-threatening illness. Its goal is much more than comfort in dying; palliative care is about living, through meticulous attention to control of pain and other symptoms, supporting emotional, spiritual, and cultural needs, and maximizing functional status.The spectrum of investigations and interventions consistent with a palliative approach is guided by the goals of patient and family, and by accepted standards of health care.
5 “Thank you for giving me aliveness” Jonathan – 6 yr old boy terminally ill boyRef: “Armfuls of Time”; Barbara Sourkes
6 Palliative Care… The “What If…?” Tour Guides Can Help Inform The Choice Of Not InterveningWhat would things look like?Time frame?Where care might take placeWhat should the patient/family expect (perhaps demand?) regarding care?How might the palliative care team help patient, family, health care team?“What if…?Disease-focused Care(“Aggressive Care”)
7 Lifetime Risk of Dying (%) A SOBERING TRENDLINE10050Lifetime Risk of Dying (%)Dawn of TimeTimelineToday
8 Palliative Care – Relevance In Context Lifetime Risk of:Heart disease: 1:2 men; 1:3 women (age 40+)Cancer: > 1:3Alzheimer's: 1:2.5 – 1:5 by age 85Diabetes: 1:5Parkinson’s 1:401:1Death:
9 Don’t confuse “Palliative Care” – the philosophy of approach to care in the context of life-limiting illness with “Palliative Care service delivery”….the latter is the application of the broad philosophy within the constraints of existing (limited) resourcesServices are focused on the most needy, which tends to be in the final months of life
10 Palliative Care As A Philosophy Of Care ProgramAvailableServicesCriteria
11 “Active Treatment” Palliative Care Palliative/ Comfort Intent EVOLVING MODEL OF PALLIATIVE CAREDEATH“ActiveTreatment”PalliativeCareCure/Life-prolongingIntentDEATHPalliative/Comfort IntentBereavement
13 Over-representation of cancer diagnosis, due to: Societal acknowledgement of CA as a terminal illnessMore definable palliative phase in CA than non-malignant illnessMaximizing quality of life in non-cancer illnesses often requires expertise in that specific disease, with aggressive disease-focused interventions (CHF, COPD)Budget constraints on may preclude aggressive disease-focused management of illness.
14 Palliative Care services should be challenged to broaden their involvement to address the needs of those affected by sudden, unanticipated end-of-life circumstances:Withdrawal of life-sustaining therapyInoperable surgical conditionsIschemic gutGangrenous limbsDissecting aortic aneurysmMassive strokeTrauma
15 How To “Raise The Bar” Of Expectations On Such a Fundamentally Sad Issue?
16 Expect – if not demand…High level of skill and knowledge in pain and symptom controlConsultations if necessaryCommunication with patient and/or familyClear, honest, respectfulProactive/preemptive when issues predictableAvailability and AccessibilityDignity – connection to the “who” involved; the personLow Expectations… how can youhave high expectations for death?
17 Compare With Other Interfaces With Health Care SurgeryInformed consentTeaching videosBookletsObstetricsPrenatal classesBirth PlanWhat About A “Death Plan”… with broader expectations than the usual clinical issues in a Health Care Directive?
18 SYMPTOMS IN ADVANCED CANCER Ref: Bruera 1992 “Why Do We Care?” Conference; Memorial Sloan-Kettering
19 Symptoms At The End of Life in Children With Cancer Wolfe J. et al, NEJM 2000; 342(5) p8070%6050403020SuccessfullyTreated(% Of AffectedChildren)1027 %16 %10 %PainDyspneaNausea And Vomiting
21 Alleviate Suffering for a Condition Which: CHALLENGE-Alleviate Suffering for a Condition Which:Ultimately will affect every one of us: - Large numbers - We have our own “death issues” as care providersOnly approximately 10% of Canadians have access to specialty careFew physicians or nurses have even basic trainingClinicians don’t intuitively know when they need advice… They don’t know what they don’t knowThe process & outcome are expected to be terrible… after all, it is deathHow can you tell when something inherently horrible goes badly?Has a tremendous impact on those close to the individual… “collateral suffering”No chance of feedback from patient “after the fact”
22 Effective care of the dying involves: Adequate knowledge baseAttitude / Behaviour / PhilosophyActive, aggressive management of sufferingTeam approachRecognizing death as a natural closure of lifeBroadening your concept of “successful” care
23 Potential Palliative Conditions “The Usual Suspects” – progressive life-limiting illnessIncurable cancerProgressive, advanced organ failure (heart, lung, kidney, liver)Advanced neurodegenerative illness (ALS, Alzheimer’s Disease)Sudden fatal medical conditionAcute strokeWithholding or withdrawing life-sustaining interventions (ventilation, dialysis, pressors, food/fluids…)Trauma – eg. head injuryIschemic limbs, gutPost-cardiac arrest ischemic encephalopathyetc…
24 Potential Palliative Care Interventions GenerallyNot PalliativePalliativeVariableSupportCPREmotionalSpiritualPsychosocialVentilationTransfusionsInfectionsHighlyburdensomeInterventionsControl ofHypercalcemiaPainDyspneaNauseaVomitingTube FeedingDialysis
26 Improving Palliative Care Professional PracticeStds of practice for symptom management, availability, responsiveness, communicationCertain palliative interventions held to higher scrutiny and rigour – eg. palliative sedationSpecialty area for nursingCore competenciesCurriculum in undergrad and post-grad in all involved disciplinesContinuing educationEducationImproving Palliative CarePublic AwarenessRaise awareness and expectationsImprove “death culture”Empower in decision-makingService AvailabilityCore requirements for facility and program accreditation (CCHSA)Risk management people need to see poor palliative care as a riskRe-frame good palliative care as prevention/promotion