EEPPEECC

EEPPEECC

Elements and Models of End-of-life Care

Elements and Models of End-of-life Care

Plenary 3Plenary 3Plenary 3Plenary 3

The Project to Educate Physicians on End-of-life CareSupported by the American Medical Association andthe Robert Wood Johnson Foundation

The Project to Educate Physicians on End-of-life CareSupported by the American Medical Association andthe Robert Wood Johnson Foundation

ObjectivesObjectives

Describe conceptions of sufferingDescribe conceptions of suffering

Describe elements of end-of-life careDescribe elements of end-of-life care

Define palliative careDefine palliative care

Describe hospice, palliative care Describe hospice, palliative care program standardsprogram standards

Describe conceptions of sufferingDescribe conceptions of suffering

Describe elements of end-of-life careDescribe elements of end-of-life care

Define palliative careDefine palliative care

Describe hospice, palliative care Describe hospice, palliative care program standardsprogram standards

Conceptions of sufferingConceptions of suffering

Fragmentation of personhood – Fragmentation of personhood – CassellCassell

Broken stories – BrodyBroken stories – Brody

Challenge to meaning – ByockChallenge to meaning – Byock

Total pain – SaundersTotal pain – Saunders

Fragmentation of personhood – Fragmentation of personhood – CassellCassell

Broken stories – BrodyBroken stories – Brody

Challenge to meaning – ByockChallenge to meaning – Byock

Total pain – SaundersTotal pain – Saunders

The broad perspectiveThe broad perspective

A narrow focus will miss the targetA narrow focus will miss the target

depression affects experience of paindepression affects experience of pain

medication useless if can’t get itmedication useless if can’t get it

spiritual strength may enhance spiritual strength may enhance tolerancetolerance

feeling abandoned may be expressed as feeling abandoned may be expressed as physical sufferingphysical suffering

A narrow focus will miss the targetA narrow focus will miss the target

depression affects experience of paindepression affects experience of pain

medication useless if can’t get itmedication useless if can’t get it

spiritual strength may enhance spiritual strength may enhance tolerancetolerance

feeling abandoned may be expressed as feeling abandoned may be expressed as physical sufferingphysical suffering

Elements of end-of-life experienceElements of end-of-life experience Fixed characteristics of the patientFixed characteristics of the patient

Modifiable dimensions of the Modifiable dimensions of the patient’s experiencepatient’s experience

Care-system interventionsCare-system interventions

Outcomes – overall experience of the Outcomes – overall experience of the dying processdying process

Fixed characteristics of the patientFixed characteristics of the patient

Modifiable dimensions of the Modifiable dimensions of the patient’s experiencepatient’s experience

Care-system interventionsCare-system interventions

Outcomes – overall experience of the Outcomes – overall experience of the dying processdying process

Fixed characteristicsof the patient

Fixed characteristicsof the patient

ReligionRace, ethnicity

and culture

Diagnosis, prognosis

Socioeconomicclass

Modifiable dimensionsModifiable dimensions

Psychological,cognitive symptoms

Physicalsymptoms

Caregivingneeds

Hopes,expectations

Economicdemands

Social relationships, support

Patient

Spiritual, cultural,existential beliefs

Health system interventionsHealth system interventions

Family /friends

Community

Health professionals

Institutions

Patient

OutcomesOutcomes

Qualityof life

Utilization

Satisfaction

Pain /symptom

relief

Patient

Hospice in the USHospice in the US

A placeA place

An organization or programAn organization or program

An approach to or philosophy of careAn approach to or philosophy of care

A system of reimbursementA system of reimbursement

A placeA place

An organization or programAn organization or program

An approach to or philosophy of careAn approach to or philosophy of care

A system of reimbursementA system of reimbursement

Palliative carePalliative care

Relieving sufferingRelieving suffering

Improving quality of lifeImproving quality of life

Relieving sufferingRelieving suffering

Improving quality of lifeImproving quality of life

Palliative care – definition 1Palliative care – definition 1““Palliative care seeks to prevent, relieve, Palliative care seeks to prevent, relieve, reduce or soothe the symptoms of disease reduce or soothe the symptoms of disease or disorder without effecting a cure… or disorder without effecting a cure… Palliative care in this broad sense is not Palliative care in this broad sense is not restricted to those who are dying or those restricted to those who are dying or those enrolled in hospice programs… It attends enrolled in hospice programs… It attends closely to the emotional, spiritual, and closely to the emotional, spiritual, and practical needs and goals of patients and practical needs and goals of patients and those close to them.”those close to them.”

Institute of Medicine 1998Institute of Medicine 1998

““Palliative care seeks to prevent, relieve, Palliative care seeks to prevent, relieve, reduce or soothe the symptoms of disease reduce or soothe the symptoms of disease or disorder without effecting a cure… or disorder without effecting a cure… Palliative care in this broad sense is not Palliative care in this broad sense is not restricted to those who are dying or those restricted to those who are dying or those enrolled in hospice programs… It attends enrolled in hospice programs… It attends closely to the emotional, spiritual, and closely to the emotional, spiritual, and practical needs and goals of patients and practical needs and goals of patients and those close to them.”those close to them.”

Institute of Medicine 1998Institute of Medicine 1998

Palliative care – definition 2Palliative care – definition 2““The active total care of patients whose disease The active total care of patients whose disease is not responsive to curative treatment. Control is not responsive to curative treatment. Control of pain, of other symptoms, and of of pain, of other symptoms, and of psychological, social and spiritual problems, is psychological, social and spiritual problems, is paramount. The goal of palliative care is paramount. The goal of palliative care is achievement of the best quality of life for achievement of the best quality of life for patients and their families. Many aspects of patients and their families. Many aspects of palliative care are also applicable earlier in the palliative care are also applicable earlier in the course of the illness in conjunction with anti-course of the illness in conjunction with anti-cancer treatment.”cancer treatment.”

WHO 1990WHO 1990

““The active total care of patients whose disease The active total care of patients whose disease is not responsive to curative treatment. Control is not responsive to curative treatment. Control of pain, of other symptoms, and of of pain, of other symptoms, and of psychological, social and spiritual problems, is psychological, social and spiritual problems, is paramount. The goal of palliative care is paramount. The goal of palliative care is achievement of the best quality of life for achievement of the best quality of life for patients and their families. Many aspects of patients and their families. Many aspects of palliative care are also applicable earlier in the palliative care are also applicable earlier in the course of the illness in conjunction with anti-course of the illness in conjunction with anti-cancer treatment.”cancer treatment.”

WHO 1990WHO 1990

Palliative care – expanded definitionPalliative care – expanded definition Affirms life, regards dying as a normal Affirms life, regards dying as a normal

processprocess Neither hastens nor postpones deathNeither hastens nor postpones death Provides relief from pain, other symptomsProvides relief from pain, other symptoms Integrates psychological and spiritual careIntegrates psychological and spiritual care Interdisciplinary team Interdisciplinary team Support system for the family Support system for the family

WHO 1990WHO 1990

Affirms life, regards dying as a normal Affirms life, regards dying as a normal processprocess

Neither hastens nor postpones deathNeither hastens nor postpones death Provides relief from pain, other symptomsProvides relief from pain, other symptoms Integrates psychological and spiritual careIntegrates psychological and spiritual care Interdisciplinary team Interdisciplinary team Support system for the family Support system for the family

WHO 1990WHO 1990

HospiceHospicePalliative carePalliative care

Curative / remissive therapyCurative / remissive therapy

PresentationPresentation DeathDeath

Standards for hospice and palliative care . . . Standards for hospice and palliative care . . . Access to care, delivery of careAccess to care, delivery of care

Informed choicesInformed choices

Symptom managementSymptom management

Psychological, social and spiritual Psychological, social and spiritual supportsupport

Access to care, delivery of careAccess to care, delivery of care

Informed choicesInformed choices

Symptom managementSymptom management

Psychological, social and spiritual Psychological, social and spiritual supportsupport

. . Standards for hospice and palliative care. . Standards for hospice and palliative care Grief, bereavement supportGrief, bereavement support

Continuity between care settingsContinuity between care settings

Evaluation, research, educationEvaluation, research, education

Grief, bereavement supportGrief, bereavement support

Continuity between care settingsContinuity between care settings

Evaluation, research, educationEvaluation, research, education

EEPPEECC

EEPPEECC

Elements and Elements and Models of End-Models of End-of-life Careof-life Care

SummarySummary

Elements and Elements and Models of End-Models of End-of-life Careof-life Care

SummarySummary