Practice Support ProgramEnd of Life

Learning Session 2

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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-of-Life Primary Care Provider Education Project

• Fraser Health End of Life Care Program: Advance Care Planning Initiative

• Gold Standards Framework (http://www.goldstandardsframework.nhs.uk)

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Welcome back<TBD>

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Patient/Family/Community’s voice(10 minutes)

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Report back(50 minutes)

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Team Name:___________

Date:___________

PSP Storyboard template for End of Life

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Background information

• Why did we choose End of Life

• What influence did the practice self-assessment have in your choice of changes in EoL

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Team members – Team picture

• List team members and roles

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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

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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)

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)

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• What did you learn?

• Did things change from baseline in your measures?

Study

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Graphs

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Patient story

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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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• 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

Assess: Symptom burden

Edmonton Symptom Assessment Scale (ESAS)

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ESAS:

Edmonton Symptom Assessment

Scale

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ESAS:

Edmonton Symptom Assessment

Scale

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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?

Assess: OPQRSTUV; Physical exam

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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

DISEASE

DIAGNOSIS

SPREAD

TREATMENT

BENEFITS

BURDENS

OTHERPROGNOSTICFACTORS

PATIENT

EXPERIENCE (SUFFERING)

SYMPTOM BURDEN(ESAS)

FUNCTIONAL STATUS (PPS)

ASSESSMENT

CARE PLAN

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• 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.

Care plans

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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 PalliativeCare 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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