palliative care from many viewpoints victoria...

Health Accreditation Regional Health Forum

June 25, 2010

Chiang Mai, Thailand

Dr. Michael Downing, MD Clinical Associate Professor,

Division of Palliative Care University of British Columbia, Canada

Palliative Medicine & Director of Research, Victoria Hospice

Palliative Care from Many Viewpoints –

Victoria Hospice

Canadian Hospice Palliative

Care Association, 2010

“Hospice palliative care is

whole-person health care that aims

to relieve suffering & improve the

quality of living & dying”

Vision

“That all Canadians have access to

quality end-of-life care”

VICTORIA HOSPICE

MODEL

Victoria Hospice

Began in 1980; celebrating 30 yrs

“Pieces”

A bridge between home & hospital

Funding support from both gov’t

and community support

Team

Center of care patient and family

Bereavement integral

Support for staff provided

Commit to highest care possible

Clinical Regional Program Population 350,000

7 Bed

Tertiary Home

VHS Registration

& Coordination

Office

Home

Death

Acute Ward

Consults

17 bed Palliative Care Unit

10 Bed

Hospice

Consult

PRT

Cancer

Pall. Pain

Clinic

24 hour

rapid

response

Emerg.

X

Fam.

Phys.

Home

Nursing

Victoria Hospice Program

Clinical Services Palliative Care Unit (PCU)

Home Nursing

Palliative Response Team (PRT)

Medical Consultation

Psychosocial & Spiritual

Volunteers

Bereavement

Other Services

Education and Training

Research

Fund-Raising

Network extension Train-the-trainer

Program based on:

Advanced progressive illness

Cancer 75-80%; Non-cancer 20-25%

Average time from 1st contact to

death = ~100 days

Average in Unit 7-12 days

Average on PRT 3.5 days

Illness trajectory measured by

Palliative Performance Scale

(PPSv2)

PPS

100%

90%

60%

50%

40%

30%

20%

10%

0%

70%

80%

Ambulation Activity & Self-Care Intake Conscious

Evidence of Disease Level

Full Normal Activity Full Normal Full

No Evidence of Disease

Full Normal Activity Full Normal Full

Some Disease

Full Normal Activity with Effort Full Normal or Full

Some Disease Reduced

Reduced Unable Normal Job/Work Full Normal or Full

Some Disease Reduced

Reduced Unable Hobby/House Work Occasional Normal or Full

Significant Disease Assistance Reduced +/- Confusion

Mainly Sit/Lie Unable to Do Any Work Considerable Normal or Full

Extensive Disease Assistance Reduced +/- Confusion

Mainly in Bed Unable to Do Any Work Mainly Normal or Full or Drowsy

Extensive Disease Assistance Reduced +/- Confusion

Total Bed Bound Unable to Do Any Work Total Care Reduced Full or Drowsy

Extensive Disease +/- Confusion

Total Bed Bound Unable to Do Any Work Total Care Minimal Full or Drowsy

Extensive Disease Sips +/- Confusion

Total Bed Bound Unable to Do Any Work Total Care Mouth Drowsy or

Extensive Disease Care Only Coma

Death x x x x

Palliative Performance Scale (PPSv2)

PALLIATIVE CARE UNIT

17 BED PALL IAT IVE UNI T

UNIT Reception Area

1st Patient & Family Lounge

Patient & Family Refreshment Area

Coffee

Fridge

Microwave

Hallway of UNIT

2nd Patient & Family Lounge

Internet

for family

Family Conference Room

Patient Bedroom

Ceiling

Lift

electric

Sitting & Sleeping

Area for Family

Patient Bedroom

TV and

Fridge

Patient Bedroom

Joan - Clinical Nurse

Educator

Jill – Unit Nurse

Kirsten – Music

Therapist

Michelle – Counsellor

Ryan – Palliative

Medicine Morning Rounds

Art on

Ward

Walls

Done by

Volunteers

PALLIATIVE RESPONSE TEAM (PRT)

MEDICAL, NURS ING & PSYCHOSOCIAL TEAM

PALLIATIVE RESPONSE TEAM (PRT)

• 24 hour response to homes

• Purpose:

• Short term crisis intervention for symptom control

• Support death at home, in addition to Home Nurse

and Family Physician

• Reduce Emergency and hospital admissions

• Team

• Nurses 12-hour shifts x2

• Counsellors day and evening shift

• Palliative Physician rounds daily and 24 hr on-call

Statistics

PRT Nurse 12 hour shifts, 7 days per

week

Aver # patients per day 3-5

Total # cases per year ~500

Average LOS 3.5 days

PRT Vehicle • Provided by Hospice

donations

• Drive team

• Carry supplies & drugs

PRT Drug Kit

Drug Kit left in

each home

while on PRT

Drugs

accessed by

PRT nurse,

home nurse or

Family Doctor

PRT DRUG KIT & CAR CONTENTS

• Oral, supp and injectable meds for • Pain

• Nausea

• Anxiety

• Delirium

• Laxatives, enema

• Seizures

• Respiratory secretions

• Bladder spasm

• Diuretic

• Steroid

• Other supplies • Gloves

• Swabs

• Syringes

• Skin care pads

• IV bags for hypodermocleisis

• Small suction machine

• Small oxygen

Die at Home40%

Stay Home36%

To Tertiary18%

HPC Unit (LTC)2%

To ER/Ward4%

15-Yr PRT Discharge Location

Died at Home

40% of 10,000 Referrals

PSYCHOSOCIAL, SPIRITUAL & BEREAVEMENT

COMMUNITY & UNIT COUNSELLORS

Music Therapist (Kirsten) sings with a

patient of songs she would like to

hear or sing along with

BEREAVEMENT COUNSELLORS

VOLUNTEERS

VOLUNTEER TALKS WITH PATIENT AND HELPS WITH WRITING LETTER

58 year old mother with breast

cancer and brain metastases. Use

of steroid causes swollen face

FUND RAISING S W I M A T H O N

C E L E B R A T E A L I F E

RESEARCH & DEVELOPMENT

EDUCATION

• Students • Medical, nursing, social

• Medical residents

• Courses • Palliative Medical

Intensive (5 days)

• Psychosocial Course (5 days)

• Books • Medical Care of the Dying

• Transitions in Dying & Bereavement

• Tools • Palliative Performance Scale

• Bereavement Risk Assessment

• Bowel Performance Scale

Conceptual Models of

palliative care

Disease Modifying Therapy (curative, restorative, palliative)

Hospice Palliative Care Focus

of Care

Presentation

Diagnosis

Illness Trajectory

Acute Chronic Advanced

Life-threatening

End-of-Life Care

Patient

Death

Model of Palliative Care, 2002

Therapy to relieve suffering

&/or improve quality of life

Bereavement

Time

“Upstream” Palliative Care

Blurred Care Model

Palliative Care Disease

Age

Location

Stage Cancer

Cardiovascular

Respiratory

Neurological

HIV/AIDS

other

Home

Acute Care

Chronic Care

Consultation

Homeless

Hospice

Tertiary PCU

High Intensity

Early

Chronic

Advanced

Dying

Neonate

Pediatric

Adult

Elderly

Aged Old

Staffing

Policies Structure

Resources

M. Downing

Medical Care of Dying, 2006

Intermediate

Stable PPS 70%

Transitional PPS 40%-60%

End-of-Life PPS 30%

100%

90%

80%

70%

60%

50%

40%

30%

20%

10%

0%

Terminal (days)

Stable

CHPCA 2-Phases

Cancer Care Ontario PCIP

Pall Care Integration Project

3-Groups

Australia PCOC Pall Care

Outcomes Collaborative

5-Phases

PPS

11-Levels

Declining

Unstable

M. Downing

Complex

Australia Population Based Palliative Model

3-Groups

Primary Care

Palliative: redu

ce sufferin

g

Active: red

uce d

isease

Bereavement

Palliative care patients are divided into three groups:

1. Cancer patients

2. Patients with incurable serious illness

3. End-of-life patients

Inpatients Outpatients

Palliative care needs assessment

Functional capacity or performance level of patients receiving palliative care is assessed by: Palliative Performance Scale (PPSv2 – Thai) for patients aged 15 and older, or the Child Palliative Performance Scale (PPS – Child) for

patients under 15 years old.

Multidisciplinary collaborative care plan based on 3 PPS levels, developed from Palliative Care Integration Project Collaborative Care Plans – “Lite” Version, published by Palliative Care Integration Project, Palliative Care Medicine, Queen’s University, Kingston, Ontario, Canada

PPS 70% - PPS 100%

SUANDOK PALLIATIVE CARE MODEL IS EXCELLENT

The patients and families receive palliative care as needed.

Discharge

Increased quality of life for patients and their families

Increased quality of life, and death with dignity

Patient dies peacefully in the hospital – death with dignity

PPS 0 % - PPS 30 % PPS 40 % - PPS 60 %

a) Dying patients: PPS 10%-30%

Confer with patients and their families regarding preferences for end of life care, such as cardiopulmonary resuscitation and home death versus hospital.

Reassess the appropriateness of medication, oxygen, and IV fluid. Assess physical and psychosocial care needs according to established guidelines of symptom management and counseling needs.

Spiritual needs assessment, and care of patients and family members. Example: provision for bedside visitation of religious workers according to patient preference. Grief assessment and care of the patients and their families. Permit families to have 24 hour bedside visitation.

Assessment and management of risks for falling, suicidal tendencies, etc.

Referral to community hospital or local health service center for continuity of care.

b) For deceased patients: PPS 0%

Clean and groom the body of the patient.

Worship ritual for the patient, according to religious preference.

Bereavement care, and grief counseling for the family of the patient. c) Post operative patients:

Routine post operative care until stable.

Provision of care to patients and their families, based on PPS level.

PPS 0 % - PPS 30 %

Multidisciplinary health care team confers with patients and their families regarding disease assessment and management, and palliative care. Assess physical and psychosocial care needs according to established guidelines of symptom management and counseling needs. Spiritual needs assessment, and care of patients and family members. Example: provision for bedside visitation of religious workers according to patient preference.

Assess self care ability of patients, and ability of families to provide patient care. Risk assessment and management of falling, pressure sores, etc. Needs assessment and care of patients and their families. Provision of a beneficial environment, such as a tranquil room. Provision of health education for patients and their families.

Referral to community hospital or local health service center for continuity of care.

PPS 40 % - PPS 60 %

Multidisciplinary health care team confers with patients and their families regarding disease assessment and management, and palliative care. Assess physical and psychosocial care needs according to established guidelines of symptom management and counseling needs. Assess the patient’s. and the family’s acceptance of the illness, and provide counseling.

Spiritual needs assessment, and care of patients and family members. Needs assessment and care of patients and their families.

Risk assessment and risk management for the patients such as falling, suicidal attempt etc. Health education for patients and their families.

Referral to community hospital or local health service center for continuity of care.

PPS 70% - PPS 100%

Model Caution: each patient has unique

trajectory – ie. Some high PPS die

quickly; some low PPS live long

Summary

Some days it is good the work

in palliative care

Other days … !!!!

My view of “Needs”

• Comfort

• Security

• Choice

Needs of Patients

• Minimize burden on them

• Strengthen supports for them

• Bereavement journey

Needs of Families

• Accessible, Available

• Efficient, Timely

• Quality

Needs of Health Care

System

• Opt in (survive); Opt out (dying)

• Eliminate undignified dying

• Support aging & costs

Needs of Society

5 Take Home Points …

Hospice palliative care continues to

change with wider interest from other

parts of health care

Begin where you are, with what you

have, and grow from there

Measure what you do, and improve;

excellence is the driving vision

Provide support to staff HUMANIZE

[appreciation, education, supports to

sustain and retain]

… Take Home Points

What must remain:

Patient and family as true center of

care

Build excellence in helping with pain &

suffering

Use an inter-disciplinary team

Compassion is the heart of care

Each person is unique and worthy of

our respect and individualized care

The PowerPoint file will be available from

the HA Regional Forum Committee

Sustainable if meet criteria:

+ Gov’t/Hospital $ Health policy for care

+ Donor $ If helpful, they will donate

+ Volunteers Much value, little cost

+ Prudence Budget within means

+ Statistics of value Show efficient, accessible

+ Quest for Quality Strive for best possible

PLUS ……. [next page]

WHAT … PALLIATIVE NETWORK

• We have an Vancouver Island Palliative Network

• Purpose: To form and support local interdisciplinary

palliative care/hospice teams in a train-the-trainer

model

X

X

X X

X

X

X X

X X

X X

X

Victoria

WHAT … PROCESS

• Invitations to: • MD’s - to Chief of Medical Staff at each local hospital

• ARN - to the Director for Nursing at each local hospital

• HCN - to Director of Home care Nursing in each hospital catchment area

• Letter of introduction to CEO’s of Health Regions seeking their endorsement

HOW …

• Form regular, identified ‘triad’ groups

• Periodic workshops

• AV materials & handouts for local use

• Group information sharing & interaction

• Teaching methods

• Expert phone advice

• Evaluation to meet needs & desires