palliative care from many viewpoints victoria...
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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