the quest for quality end of life care

The Quest for Quality End The Quest for Quality End of Life Careof Life Care

Larry Librach MD,CCFP,FCFPLarry Librach MD,CCFP,FCFP

Professor & Head, Division of Palliative Care, Professor & Head, Division of Palliative Care, Dept. of Family Medicine, Dept. of Family Medicine, Sun Life Financial Chair & Director Joint Centre Sun Life Financial Chair & Director Joint Centre for Bioethics, University of Torontofor Bioethics, University of Toronto

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Thank you for your friendship and Thank you for your friendship and for your commitment to quality for your commitment to quality end of life careend of life care


•We all die !We all die !

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•““In some respects, this In some respects, this century’s scientific and century’s scientific and medical advances have medical advances have made living easier and made living easier and dying harder”dying harder”

““Approaching Death”-The Institute of Approaching Death”-The Institute of Medicine 1999Medicine 1999

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How We DieHow We Die

There is There is considerable considerable evidence evidence that many that many people still people still die very die very “badly” in “badly” in our health our health care systemscare systems

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• We have We have developed developed systems that systems that provide quality provide quality care for birthing.care for birthing.

• Can we now do Can we now do the same for the same for quality care for quality care for the dying?the dying?

Temmy Latner CentreTemmy Latner Centre 777 Temmy Latner Centre for Palliative Care


What Defines Quality End-of-Life What Defines Quality End-of-Life Care?Care?

1)1)Defining a “good death”Defining a “good death”

2)2)Health care policyHealth care policy

3)3)A framework for holistic, A framework for holistic, interprofessional careinterprofessional care

4)4)Doing comprehensive assessment Doing comprehensive assessment & negotiating goals of care& negotiating goals of care

5)5)Multiple integrated locations for Multiple integrated locations for carecare

6)6)Education of health care providersEducation of health care providers

7)7)Evaluating outcomesEvaluating outcomes


Defining a Good DeathDefining a Good Death


Defining a Good DeathDefining a Good DeathSinger PA et al Quality end-of-life care: Singer PA et al Quality end-of-life care:

Patients’ perspectives JAMA Patients’ perspectives JAMA 1999;281:163-81999;281:163-8

• 5 dimensions of a good death5 dimensions of a good deathPain/symptom managementPain/symptom managementAvoiding prolongation of dyingAvoiding prolongation of dyingAchieving a sense of controlAchieving a sense of controlRelieving burden on othersRelieving burden on othersStrengthening relationships Strengthening relationships

with loved oneswith loved ones10


Defining a Good DeathDefining a Good Death

• Pain and symptom managementPain and symptom management• Preparation for deathPreparation for death• CompletionCompletion• Contributing to othersContributing to others• Affirmation of the whole personAffirmation of the whole person• Clear decision makingClear decision making

Steinhauser et al In search of a good death: Steinhauser et al In search of a good death: observations of patients, families, and providers Ann observations of patients, families, and providers Ann

Intern MedIntern Med2000;132:825-8322000;132:825-832

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What is a Good Death in What is a Good Death in Trinidad?Trinidad?

• Can you define a good death in Can you define a good death in your cultures?your cultures?How has it changed?How has it changed?How will it change?How will it change?


Health Care PolicyHealth Care Policy

• Recognition of the need for Recognition of the need for quality end of life care by quality end of life care by government and your health care government and your health care systemsystemHealth care system prioritiesHealth care system prioritiesGood birthing and good dying!Good birthing and good dying!

• Cost effectiveness of palliative Cost effectiveness of palliative carecare

• Beyond institutional careBeyond institutional care


HCPs’ Issues of Dying & HCPs’ Issues of Dying & DeathDeath

• One of the major barriers to One of the major barriers to providing good end of life care is the providing good end of life care is the HCP’s own attitudes towards dying & HCP’s own attitudes towards dying & deathdeath

• Need to recognize your own issues Need to recognize your own issues and fearsand fears

• Cannot practice what you do not Cannot practice what you do not knowknow

• Being overconfident about what you Being overconfident about what you do knowdo know

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Medical Attitudes Towards Medical Attitudes Towards DeathDeath

• High death anxiety in physicians & High death anxiety in physicians & nursesnursesDeath is the “enemy”Death is the “enemy”Purpose of medicine is often seen Purpose of medicine is often seen

as finding a cure for death and as finding a cure for death and not for its original purpose to not for its original purpose to care and comfortcare and comfort

Physicians are key to the changePhysicians are key to the changePhysicians can be barriers to changePhysicians can be barriers to change

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Insert Title here


Your Own AttitudesYour Own Attitudes

• Shaped by:Shaped by:Family experiences & teachingFamily experiences & teachingClinical experiences good & Clinical experiences good &

badbadClinician role modelsClinician role modelsFearFearReligious beliefsReligious beliefs

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A Framework For A Framework For Holistic, Holistic,

Interprofessional CareInterprofessional Care• Defining palliative careDefining palliative care

Not an easy taskNot an easy taskMultiple definitions Multiple definitions WHO, Canada, NHPCO, EAPCWHO, Canada, NHPCO, EAPC

• Perhaps more important to Perhaps more important to define principles of palliative define principles of palliative carecare

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Definition of Palliative Definition of Palliative CareCare

• Hospice palliative care aims to Hospice palliative care aims to relieve suffering and improve the relieve suffering and improve the quality of living and dyingquality of living and dying

• Hospice palliative care strives to help Hospice palliative care strives to help patients and families:patients and families: address physical, psychological, social, address physical, psychological, social,

spiritual and practical issues, and their spiritual and practical issues, and their associated expectations, needs, hopes associated expectations, needs, hopes and fearsand fears

prepare for and manage self-determined prepare for and manage self-determined life closure and the dying processlife closure and the dying process

cope with loss and griefcope with loss and grief


Definition of Palliative Definition of Palliative CareCare

• Hospice palliative care is Hospice palliative care is appropriate for any patient living appropriate for any patient living with a progressive, life-with a progressive, life-threatening illness due to any threatening illness due to any diagnosis, with any prognosis, diagnosis, with any prognosis, regardless of age, and at any regardless of age, and at any time time


When is “Palliative or End of When is “Palliative or End of Life Care”?Life Care”?

• No specific dividing lineNo specific dividing line• NOT when active disease NOT when active disease

oriented therapy is stoppedoriented therapy is stopped• No evidence that dealing with No evidence that dealing with

issues hurts patients or familiesissues hurts patients or families


The Old Model of The Old Model of Palliative CarePalliative Care

CURE PALLIATIVE

“Magic” dividing line


Integrating Palliative Integrating Palliative CareCare

Palliative

Disease-modifying

The Last Hours

Bereavement

Death

The Time of Struggle

Patient-centred care Family-centred care


Guiding PrinciplesGuiding Principles1.1. Patient and family focusedPatient and family focused

2.2. High quality careHigh quality care

3.3. Safe and effectiveSafe and effective

4.4. AccessibleAccessible

5.5. Adequately resourcedAdequately resourced

6.6. CollaborativeCollaborative

7.7. Knowledge-basedKnowledge-based

8.8. AdvocacyAdvocacy

9.9. Research Research


Cornerstones of PEOLCCornerstones of PEOLC

Comprehensive assessmentComprehensive assessment

++Goals of careGoals of care


Overall messageOverall message

• Comprehensive assessment Comprehensive assessment defines the issues that cause defines the issues that cause patient suffering and guides the patient suffering and guides the development of the care plandevelopment of the care plan

• The goals of care are a bridge of The goals of care are a bridge of understanding between the understanding between the patient, family & care providerspatient, family & care providers


Objectives in Objectives in AssessmentAssessment

• Describe conceptions of Describe conceptions of sufferingsuffering

• Use a framework to guide Use a framework to guide assessmentassessment

• Use a validated screening tools Use a validated screening tools • Carry out a detailed Carry out a detailed

assessment of issues for assessment of issues for patient and familypatient and family


Goals of CareGoals of Care

• What are the wishes of patients What are the wishes of patients & families?& families?

• What are the issues for their What are the issues for their care providers?care providers?

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Objectives In Goals of Objectives In Goals of CareCare

• Discuss potential goals of careDiscuss potential goals of care• Understand the different goals Understand the different goals

and how they interrelate and and how they interrelate and changechange

• Be able to adjust care and Be able to adjust care and communication according to communication according to cultureculture


Why skills in assessmentWhy skills in assessmentand in negotiating goals of and in negotiating goals of

care are importantcare are important• Patients expect relief of Patients expect relief of

sufferingsuffering• Key diagnostic toolKey diagnostic tool• Coordinates team of health Coordinates team of health

professionalsprofessionals• Can have therapeutic effectsCan have therapeutic effects• Develops the care provider-Develops the care provider-

patient relationshippatient relationship

9 Dimensions9 Dimensionsof Assessmentof Assessment

1. Illness / 1. Illness / treatment treatment summarysummary

2. Physical 2. Physical

3. Psychological3. Psychological

4. Decision 4. Decision makingmaking

5. 5. CommunicationCommunication

6. Social6. Social

7. Spiritual7. Spiritual

8. Practical8. Practical

9. Anticipatory 9. Anticipatory planning for planning for deathdeath

Potential Goals of CarePotential Goals of Care

• Cure of diseaseCure of disease• Avoidance of Avoidance of

premature premature death death

• Maintenance or Maintenance or improvement in improvement in functionfunction

• Prolongation of Prolongation of lifelife

• Relief of Relief of sufferingsuffering

• Quality of lifeQuality of life• Staying in controlStaying in control• A good death A good death • Support for Support for

families and families and loved onesloved ones

We are trained to seek simplicity and certainty.

We must hunger for complexity and embrace ambiguity.

- Leonard Hirsch


Location of CareLocation of Care

• Acute care, long-term care, palliative Acute care, long-term care, palliative care/hospice units and home carecare/hospice units and home careIntegrated system bestIntegrated system bestComplicated by level of care requiredComplicated by level of care required

•Care at the end of life is often without Care at the end of life is often without crises or need for more intensive carecrises or need for more intensive care

PCUs are only one part of the systemPCUs are only one part of the system•Risk of becoming warehouses for the Risk of becoming warehouses for the dying if not integrated system dying if not integrated system


Education of Health Care Education of Health Care ProvidersProviders

• Defining core competencies for all Defining core competencies for all HCPsHCPs

• Use of effective education techniquesUse of effective education techniques• Education alone is just one of the Education alone is just one of the

factors in system changefactors in system changeEducation alone is ineffective in Education alone is ineffective in

changing HCP behaviourchanging HCP behaviourPrimary care & specialist care in all Primary care & specialist care in all

HCPsHCPs


Core Competencies in Core Competencies in PEOLCPEOLC

• Address & manage pain and symptomsAddress & manage pain and symptoms• Address psychosocial & spiritual needsAddress psychosocial & spiritual needs• Address end of life decision-making and Address end of life decision-making and

planningplanning• Communicate effectivelyCommunicate effectively• Collaborate as a member of an Collaborate as a member of an

interdisciplinary teaminterdisciplinary team• Attend to sufferingAttend to suffering

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Competencies in EOLCCompetencies in EOLC

• For all HCPsFor all HCPsSkills for each depend on primary Skills for each depend on primary

care focus, specific disease focus or care focus, specific disease focus or specialization focusspecialization focus

• At all levelsAt all levelsUG,PG, and CPDUG,PG, and CPDIntegrated into curriculaIntegrated into curriculaPart of new focus on Part of new focus on

professionalismprofessionalismUse of effective teaching techniquesUse of effective teaching techniques

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SummarySummary

• As HCPs we need to provide As HCPs we need to provide excellent end of life careexcellent end of life care

• The challenge for all of you is to The challenge for all of you is to meet the needs of dying patients meet the needs of dying patients and their families, relieve and their families, relieve unnecessary suffering and deal unnecessary suffering and deal with dying patients so that a with dying patients so that a “good death” is possible“good death” is possible

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Temmy Latner CentreTemmy Latner Centre 4343Dr. Larry LibrachTemmy Latner Centre for Palliative

Care

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the quest for quality end of life care

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