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Practice Support Program
End of Life
Learning Session 2
1
Acknowledgements
• End of Life Practice Support Program Committees:
Dr. Cathy Clelland, Chair, Sheila Balson, Andy Basi, Sherry Bar, Dr. Doris
Barwich, Dr. Clifford Chan-Yan, Louise Donald, Dr. Ian Courtice, Dr.
Romayne Gallagher, Dr. Neil Hilliard, Pamela Hinada, Dr, Bruce Hobson, Dr.
Marcus Hollander, Judy Huska, Pauline James, Dr. Marnie Jacobsen, Dr.
Helena Kadlec, Liza Kallstrom, Dr. Douglas McGregor, Dr. Chris Rauscher,
Pat Porterfield, Della Roberts, Christina Southey
• BC Hospice Palliative Care Association Learning
Centre for Palliative Care: Hospice Palliative End-ofLife Primary Care Provider Education Project
• Fraser Health End of Life Care Program: Advance Care
Planning Initiative
• Gold Standards Framework
(http://www.goldstandardsframework.nhs.uk)
2
Welcome back
<TBD>
3
Patient/Family/Community’s voice
(10 minutes)
4
Report back
(50 minutes)
5
PSP Storyboard template for End of Life
Team Name:___________
Date:___________
6
Background information
• Why did we choose End of Life
• What influence did the practice self-assessment
have in your choice of changes in EoL
7
Team members – Team picture
• List team members and roles
8
Our team aim
An aim template for team:
We aim to improve _________(name of process or
topic) in _____(location) so that _______ (a
numerical goal), by ________ (time period)
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Measures: Sample
Practice Key Measures
Target
Baseline
Current
results
# of pts identified and placed on a registry
% of pts on the registry that had an ESAS and
or PPS (as appropriate)
% patient on registry who have been given My
Voice (or other) and had an ACP conversation
% of patients on a registry with a collaborative
proactive care plan in place
Additional practice measures (only if additional
measures used)
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What did we do?
• Summary of what you did
(if you tested multiple changes in the action period pick
your top 1 or 2 to share)
11
Study
• What did you learn?
• Did things change from baseline in your measures?
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Graphs
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Patient story
14
Provider story
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Act
• Strong recommendations for next test cycle
 Things we would do again
 Things we suggest not to do
• Are you ready to embed this change or will you
retest and refine?
 “Our recommendation for next cycle”
 “Our recommendations if you were to try this”
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Summary of current status
• Successes:
• Challenges and/or barriers:
• What we are planning to test next:
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All teams share!
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Assessment
(40 minutes)
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Algorithm
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Assess: Prognosis
General:
• Co-morbidity.
• Recent, multiple ER visits/hospital visits.
• Complications of recent hospital stay.
• Reducing performance status (ECOG/Karnofsky/PPS).
• Dependence in most activities of daily living (ADLs).
• Impaired nutritional status despite attempts to improve
 Weight loss 5-10% of body weight in last 6 months.
 Serum albumin < 25 g/l.
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Assessment: Holistic
1. Pain and symptom management.
2. Psychosocial care for person.
3. Psychosocial care for family.
4. Spiritual care.
5. Disease management.
6. Preparing for and managing dying.
7. Bereavement.
(Canadian Hospice Palliative Care Association)
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Seniors
Assessment Tool:
Screening for
function/ADL
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Assess functional status:
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Assess: Symptom burden
Edmonton Symptom Assessment Scale (ESAS)
• Screening tool to assess
symptom burden and key
symptoms and their reported
intensity on a scale of 0 10.
e.g. Pain, Dyspnea, fatigue,
anxiety or depression
• Helps to monitor response to
treatment.
• Goal is symptom score < 4/10
• If > 4 then follow up with
OPQRSTUV
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ESAS:
Edmonton
Symptom
Assessment
Scale
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ESAS:
Edmonton
Symptom
Assessment
Scale
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Assess: OPQRSTUV; Physical exam
Onset
When did it start?
Provoking/palliating
factors
What makes it better ?
What makes it worse?
Quality
What does it feel like?
Region/Radiation
Where is it? Spread?
Severity
Scale 0-10 (worst possible)
Treatment
Current meds? Effective?
Understanding/ Impact What do you think the cause is?
What is the impact?
Values /Goals of Care What is important to
Know? Comfort Goal?
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Patient self-monitoring
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ASSESS: Symptom burden
Symptom prevalence in Heart disease; COPD;
Renal; AIDS and Cancer
• Pain, breathlessness, and fatigue – found among more
than 50% of patients for all diseases.
• 11 symptoms as prevalent as in cancer.
• Common pathway for malignant and non-malignant
disease.
Salano, Gomes, Higginson, 2006
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Symptoms in advanced heart failure
Average of 6.7 symptoms in last 6 months of life.
• Fatigue
• Dyspnea
• Pain
• Dry mouth
• Constipation
• Nausea
• Depression/anxiety
Nordgren & Sorensen Eur. J Cardiovascular Nursing 2003
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Assess: Goals of care
Goals of care change over time and
may include:
• Maintaining and improving function.
• Staying in control.
• Relief of suffering.
• Prolonging life for as long as possible or until a
specific event (e.g. graduation, wedding).
• Quality of life/ Living well.
• Pain and symptom management.
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Assess: Goals of care (continued)
• Relieving burden for family members.
• Strengthening relationships.
• Preferences for location of care.
• Life closure/ Dying well.
• Personal wishes for management of dying.
• Preferences for location of death.
• Care for the family and for caregivers
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Assess: Needs of the family/caregivers
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Assess: Additional need for support/referral
•
? 24/7 support.
•
?Home Support ? Equipment or supplies.
•
Psychosocial care for person.
•
Psychosocial care for family.
•
Spiritual care.
•
Disease management (including risk of anticipated
crisis/ “emergency”).
•
Preparing for and managing dying.
•
Bereavement.
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Assessment: Pearls
A good assessment:
• Acknowledges patient goals of care.
• Assesses the whole person and the “family” unit.
• Uses Standardized tools to support practice and provide
information.
• Is proactive.
• Facilitates collaboration.
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Planning: What needs to happen
next?
(20 minutes)
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EOL Algorithm: Care Planning linked to stage
of illness
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A good care plan addresses: Whole person
DIAGNOSIS
ASSESSMENT
SPREAD
DISEASE
OTHER
PROGNOSTIC
FACTORS
BENEFITS
TREATMENT
BURDENS
PATIENT
CARE
PLAN
SYMPTOM
FUNCTIONAL EXPERIENCE
BURDEN
STATUS (PPS) (SUFFERING)
(ESAS)
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Care plans
• Directed by the prognosis and stage of illness
and the patient/family centered goals of care
translated into concrete, specific plans
 May mean reduction in aggressive tests, procedures,
medications. Not doing ‘too much’ or ‘too little.
 Focus on quality of life and life completion.
 Collaborative
 Supportive.
40
Good Plans: Acknowledge realities
• Assessment of prognosis/Approaching death:
“Hope for the best and plan for the worst”.
• Suffering of patient and family.
 Unavoidable

Existential issues of meaning, multiple losses, functional
decline; Spiritual concerns.
 Avoidable: Iatrogenic
o Lack of pain & symptom management;
o Lack of communication;
o Abandonment
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Good Plans: Address supports for functional
decline
• Maximizing and maintaining function is important
to patient’s/family’s quality of life
 Assess & support equipment needs
 Caregiver burden and support for the caregiver
 Falls prevention
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BC Palliative Care Benefits Program
• Purpose: To support individuals of any age who have
reached the end stage of a life-threatening disease or
illness and who wish to receive palliative care at home.
• Eligibility - Canadian residents who meet all criteria:
 Living at home.
 Diagnosed with life-threatening illness with a life
expectancy of up to 6 months.
 PPS score of 50% or less (exceptions considered).
 Consent to palliative rather than treatment oriented
care.
• Physician submits the signed BC Palliative
Care Benefits Program application on
patient’s behalf.
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BC Palliative Care Benefits Program (cont'd)
• Approved Patients Receive:
 Palliative Care Drug Plan covers 100% of the cost of eligible
prescriptions (approval within 24 hours).
 Assessment by health authority to determine need for supplies
and equipment (e.g. PPS 50->30%) - a priority assessment.
 Clients reassessed monthly to confirm need and eligibility.
 Community Nurse will discuss with GP if patient no longer in need
of free palliative supplies and equipment.
• Drug Coverage:
 Some drugs not on PharmaCare’s Plan P formulary may be
considered benefits under Special Authority coverage if needed to
alleviate patient discomfort (#4.2.2 in Guide).
 Coverage continues as long as the client is diagnosed
as requiring palliative care.
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Compassionate Care Benefits Form
• Provide Employment Insurance (EI) benefits to those who
have to be away from work temporarily to provide care or
support to a family member who is gravely ill and who has
a significant risk of death within 26 weeks (six months).
• A maximum of six weeks of compassionate care benefits
may be paid to eligible people.
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Break
(GPs and MOA to break out into
separate rooms)
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