Transcript EVOLVING TRENDS IN PALLIATIVE CARE

PALLIATIVE CARE:
TRENDS AND TREATMENT
PATHWAYS
Definition and Models
 Challenge of end-of-life care
 The promise of pathways

Palliative Care: Definition
“The active total care of patients whose disease is
not responsive to curative treatment. Control of
pain, of other symptoms, and of psychological,
social and spiritual problems, is paramount. The
goal of palliative care is achievement of the best
quality of life for patients and their families.
Many aspects of palliative care are also applicable
earlier in the course of the illness in conjunction
with anti-cancer treatment.”
World Health Organization, 1990
Palliative Care:
A Therapeutic Model
“Palliative care is an interdisciplinary
therapeutic model targeted to the care of
patients with all types of chronic,
progressive illness.
Palliative care focuses on maintaining a
satisfactory quality of life throughout the
course of the disease
and…
Palliative Care:
A Therapeutic Model
“…intensifies as death approaches to ensure
the patient and family that comfort will be a
priority, values and decisions will be
respected, psychosocial and spiritual needs
will be addressed, practical help will be
available, and opportunities for closure and
growth will be enhanced.”
Palliative Care:
A Therapeutic Model
“Palliative care should be integrated with
disease-modifying therapy as part of routine
care
and
be available as a specialized program for
those with intense needs.”
Palliative Care Is Excellent
Routine Medical Care

Implies obligations on the part of all
involved health care professionals
– Multidimensional assessment
– Excellence in communication
– Comprehensive care

Requires a skill set and a system that
supports this type of care
Palliative Care: The Need for
Specialized Care

To optimize palliative care
– Integration into best routine medical practice
– Access to specialized care
» Management of complex symptom control
problems

Comprehensive care for multiple needs

Comprehensive care of the imminently dying
Palliative Care: The Need for
Specialized Care

Access to specialized care: other benefits
– Education and training



Role modeling
Direct teaching
Formulation and testing of conceptual models
Palliative Care: The Need for
Specialized Care

Access to specialized care: other benefits
– Enhancing health care systems




Program development and testing
Quality improvement programs
Development of clinical pathways
Clinical research
Palliative Care: A Specialty

What is specialist level care?
– Involvement of professionals and volunteers
with high level of knowledge and skills, who
» Function as a team
» Consider the family as the unit of care
» Direct a care plan that integrates resources at
home, management of the primary medical team,
and specific palliative care interventions
The Palliative Care Team
Community resources
Dietician
Occupational
Therapist
Volunteers
Physician
Social
Worker
PATIENT
family
Chaplain
Nurses
Administration
Other therapies
Physiotherapist
Pharmacist
Other health care professionals
Ajemian, Oxford Textbook of
Palliative Medicine, 1993
Palliative Care: A Specialty

What is specialist level care?
– Focus on the care of patients with advanced
disease and perceived short prognosis, often the
imminently dying
Palliative Care:
Targets for Care

Addresses needs in the multiple
domains inherent in quality of life
– Physical: Symptoms, progressive
impairments
– Psychological: Symptoms, psychiatric
disorders, mood and worries, adaptation
and coping, body image, sexuality
Palliative Care:
Targets for Care

Addresses needs in the multiple domains
inherent in quality of life
– Social: Role functioning, family integration,
intimacy
– Spiritual: Religion and faith, meaning,
values, need to contribute, transcendence
– Others: Economic
Palliative Care:
Targets for Care

Addresses needs that may become most
prominent as death approaches
– Death preparation
– Assurance of comfort
– Support for autonomy, decision making
consistent with values, and preparation for
surrogate decisions
– Intensifying family support
Care at the End of Life:
Symptom Prevalence in Cancer Patients
Symptom

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Lack of energy
Worrying
Feeling sad
Pain
Feeling Nervous
Drowsiness
Dry Mouth
Sleep Difficulty
Prevalence (%)
74.2
70.9
66.1
62.7
61.9
61.0
56.5
53.7
Portenoy et al, 1994
Care at the End of Life:
Symptom Prevalence in AIDS
Symptom
 Worrying
 No energy
 Sadness
 Pain
 Irritability
 Sleep Difficulty
Prevalence (%)
85.5
85.1
81.5
75.6
75.1
73.8
– Vogl, Rosenfeld, Breitbart, Thaler et al, 1999
Symptoms in 200 Patients
During the last 48 Hours of Life
Symptom
Prevalence (%)
 Noisy, moist breathing
56
 Urinary dysfunction
53
 Pain
51
 Agitation
42
 Dyspnea
22
Lichter and Hunt, 1990
Psychological Distress in
Patients with Advanced Disease

Prevalence rates for anxiety,
depressed mood, worry >50%

Depression in approximately one-third
Caregiver Burden

20% of family members quit work to
provide care

Financial devastation
– 30-40% of Americans report loss of most
family savings while caring for a dying
relative
Place of Death:
Desire vs. Reality
90% of respondents to US survey
desire death at home
 Death in US institutions

– 1949 – 50% of deaths
– 1958 – 60%
– 1980 to present – 75%
 57%
hospitals, 17% nursing homes,
20% home, 6% other
Status of Palliative Care in
the US: SUPPORT Study
SUPPORT Study : Study to Understand
Prognosis and Preferences for Outcomes
and Risks of Treatments
 Approx. 10,000 patients, 5,000 deaths
related to 9 serious illnesses during
admission to 5 US teaching hospitals

SUPPORT: Phase I Findings
46% of DNR orders were written
within 2 days of death
 47% of physicians knew when
their patients wanted to avoid CPR
 38% of patients spent 10+ days in ICU
 50% of dying patients suffered severe
pain
 High hospital resource use

SUPPORT: Phase II Findings

Compared to control patients, those patients
whose preferences and prognoses were
communicated experienced no change in:
–
–
–
–
–
incidence and timing of written DNR orders
Patient-MD agreement on CPR preferences
Days in ICU, comatose or on ventilator
Pain
Hospital resource use
SUPPORT Study:
Conclusions

Substantial shortcomings in care for
seriously ill

Improving doctor-patient communication
through intermediary is inadequate to
change practice
Care at the End of Life:
Reasons for Deficiencies
Deficiencies in professional training and
focus
 Deficiences in the system of care

Care at the End of Life:
Reasons for Deficiencies

Problems with the professional
– Lack of physician training in symptom
control, communication skills, ethics, use of
technology in end of life care
Care at the End of Life:
Reasons for Deficiencies
–
–
–
–
Death as medical failure
No medical role in dying
Palliative care skills undervalued
Role of the physician ends when care
shifts from curative to palliative
– Always more biotechnology
– Anxiety about one’s own mortality
Care at the End of Life:
Reasons for Deficiencies

Problems with the system
– No systems (policies and procedures)
established to support excellence in
palliative care as part of routine inpatient
management
– No access to specialized programs in
palliative care
Addressing the Deficiencies:
Models for Specialized
Programs

Models for home care
– US version of hospice
– specialized nursing programs
– extensions of hospital-based palliative care
services

Hospital-based palliative care programs
Department of Pain Medicine
and Palliative Care
 Inaugurated in 1997
First program jointly devoted to pain and
palliative care
 A certified hospice program, the Jacob
Perlow Hospice, within the palliative care
division

Department of Pain Medicine
and Palliative Care
Clinical Programs
 Inpatient

consultation team
10-15 consults per week, 80% palliative care
 Ambulatory

practice
550 visits (100 new patients) per month, 80% pain
Department of Pain Medicine
and Palliative Care
Clinical Programs
 Inpatient

14 beds, 80% palliative care/hospice occupancy
 Jacob

unit
Perlow Hospice
105 patient daily census (>80% home care)
Department of Pain Medicine
and Palliative Care
Palliative Care Division
Ambulatory Services
Non-Hospice Palliative Care
Physician-Organized
Routine
Office Visits
Hospice Home Care
RN/SW-Organized
Case Management/
Triage
Home Care Nursing
High Tech Nursing
Referral to
Other Departments
or Services
(e.g., rehab)
Other Dept. Services
(e.g., volunteers,
psychologist,
nutritionist,
pastoral care)
Referral to
Other Inpatient
Facilities/
Long-Term Care
Hospitalization
Bereavement
Department of Pain Medicine
and Palliative Care
Institute for Education and Research in
Pain and Palliative Care

Source of programs to improve routine
practice
– Conferences, professional training, website
– Special projects
Special Project: Establishing
Benchmarks for the Care of the
Imminently Dying Inpatient
New York State Quality Measurement Grant
Beth Israel Medical Center, New York City, 1999-2000

Principal Investigators
– Marilyn Bookbinder, PhD
– Russell K. Portenoy, MD

Co-Investigators
–
–
–
–
–
–
–
Arthur Blank, PhD
Cheryl Avellanet, RN, MPH
Rose Anne Indelicato, RN, NP
Myra Glajchen, DSW
Pauline Lesage, MD
Elizabeth Arney, RN, BSN
Peter Homel, PhD
Palliative Care for Advanced
Disease (PCAD)
A guideline for the interdisciplinary
management of imminently dying patients
 Offers instruments to track process and
outcome data related to institutional EOL
care

PCAD: Key Elements
 Respect
patient autonomy, values, and
decisions
 Continually clarify goals of care
 Minimize symptom distress at EOL
 Optimize the delivery of appropriate
supportive interventions and consultation
 Reduce unnecessary interventions
PCAD: Key Elements
 Support
families by coordinating
services
 Provide bereavement services for
families and staff
 Facilitate the transition to alternative
care settings, such as hospice, when
appropriate
PCAD as CQI Process
Find a process to improve
Organize a team that knows the process
Clarify current knowledge about the
process
Understand causes of process
Select the process
CQI Process

PLAN
ACT
PCAD
PATHWAY
CHECK
DO
PCAD Team









Pain Medicine and Palliative Care: Nurses, Physicians,
Social Workers, Psychologists, Hospice Team
Patient Care Services (Nursing)
Quality Improvement and Tools Experts
Evaluation and Research
Ethics
Chaplain
Pharmacy
Social Work
Leadership Teams and staff of pilot units (Oncology,
Geriatrics, Hospice)
PCAD Guidelines

Consists of three components
– PCAD Care Path - the interdisciplinary plan of
care
– PCAD MD Order Sheet - a documentation tool
and suggestions for medical management
– PCAD Daily Patient Care Flowsheet - a
documentation tool for daily assessments and
interventions
PCAD Evaluation

Tools
–
–
–
–
Chart Audit Tool (Outcome Measure)
Process Audit (Process Measure)
Palliative Care Survey (Knowledge Measure)
Afterdeath Interview (Family Satisfaction
Measure)
– Focus Groups
– Qualitative Comments
PCAD Care Path
Treatment/Interventions/Assessments
 Pain Management
 Tests/Procedures
 Medications
 Fluids/Nutrition
 Activity

PCAD Care Path
Consults
 Psychosocial Needs
 Spiritual Needs
 Patient/Family Education
 Discharge Planning

PCAD Care Path



PAIN MANAGEMENT
– ASSESS PAIN Q 4 HR and evaluate within 1 hr post
intervention.
– Complete pain assessment scale.
– Anticipate pain needs.
TESTS/PROCEDURES
– Usually unnecessary for patient/family comfort (All
lab work and diagnostic work is discouraged)
MEDICATIONS
– Medication regimen focus is the relief of distressing
symptoms.
PCAD Care Path

FLUIDS/NUTRITION
– DIET: Selective diet with no restrictions
–
–
–
–
 Nutrition to be guided by patient’s choice of time,
place, quantities and type of food desired. Family
may provide food.
 Educate family in nutritional needs of dying patient
IVs for symptom management only
TRANSFUSIONS for symptom relief only
Intake and Output – consider goals of care relative to
patient comfort
Weights – consider risks/benefits relative to patient
comfort
PCAD Care Path

ACTIVITY:
– ACTIVITY DETERMINED BY PATIENT’S
PREFERENCES AND ABILITY.
– Patient determines participation in ADLs, i.e.,turning
and positioning, bathing, transfers

CONSULTS:
– Initiate referrals to institutional specialists to optimize
comfort and enhance Quality of Life (QOL) only.
PCAD Care Path

PSYCHOSOCIAL NEEDS
– PSYCHOSOCIAL COMFORT ASSESSMENT of:
 Patient
 Primary caregiver
 Grieving process of patient & family
– PSYCHOSOCIAL SUPPORT: Referral to Social Work
 Offer emotional support
 Support verbalization and anticipatory grieving
 Encourage family caring activities as
appropriate/individualized to family situation and culture
 Facilitate verbal and tactile communication
 Assist family with nutrition, transportation, child care,
financial, funeral issues
 Assess bereavement needs
PCAD Care Path

SPIRITUAL NEEDS
– SPIRITUAL COMFORT ASSESSMENT
 Spiritual supports
 Spiritual needs and/or distress
– SPIRITUAL SUPPORT: Referral to Chaplain
 Provide opportunity for expression of beliefs, fears, and hopes
 Provide access to religious resources
 Facilitate religious practices
PCAD Care Path

PATIENT/FAMILY EDUCATION
– ASSESS NEEDS AND PROVIDE EDUCATION REGARDING:
 Goals of Palliative Care for Advanced Disease
 Physical and psychosocial needs during the dying
process
 Coping techniques/Relaxation techniques
 Bereavement process and resources
PCAD Care Path

DISCHARGE PLANNING
– FOR DISCHARGE TO COMMUNITY: Referral to
Pain Medicine & Palliative Care/Hospice/Home
Care/Social Work as needed.
– FOR DEATH:
 Post mortem care observing cultural and religious
practices and preferences
 Provide for care of patient’s possessions as per
family wishes
 Bereavement support for family and staff
PCAD Care Path Page 1
ETH ISRAEL HEALTH CARE SYSTEM

ETRIE DIVISION
 NORTH DIVISION
KINGS HWY DIVISION
are Path: PALLIATIVE CARE for
PRE-ADMISSION CONSIDERATION/
DVANCED DISEASE
ADMISSION CRITERIA
 Disease at Advanced Stage – limited
life expectancy
BAR CODE
2033
LAN
REATMENT/INTERVENTIONS/
SSESSMENTS
AIN MANAGEMENT
ESTS/PROCEDURES
MEDICATIONS
 HCP: Agent___________________
 DNR
 Primary Caregiver______________
 Next of Kin____________________
START DATE:
DISCHARGE OUTCOMES
 Discharge to Community:
__ Hospice __ Home Care
__ Alternate Care Facility __Home
or
 Patient expired/Bereavement
resources provided to family
STAMP ADDRESSOGRAPH
NAME OF SERVICE/ATTENDING/ HOUSE MD:
ONGOING DAYS:
1) CLARIFY GOALS OF PALLIATIVE CARE FOR ADVANCED DISEASE (PCAD)
RREPEAT CARE PATH DAILY
WITH PATIENT AND/OR FAMILY
2) FACILITATE DISCUSSION & DOCUMENTATION OF ADVANCE DIRECTIVES:
DOCUMENT IN:
Identify designated individuals & roles in decision-making:
DAILY PATIENT CARE FLOW SHEET
1) Health Care Agent
3) Primary Care Giver
PROGRESS NOTES
2) Durable Power of Attorney
4) Next-of-kin
Identify patient/family preferences regarding:
 Health Care Proxy
 Resuscitation status/DNR
 Living Will
3) INITIATE PHYSICIAN ORDER SHEET/REVIEW DAILY
4) COMFORT ASSESSMENT to include
 Pain and symptom management needs
 Psychosocial coping , anticipatory grieving, and social/cultural needs
 Spiritual issues and distress
5) VS – None unless useful in promoting pt/family comfort
6) ASSESS FOR AND PROVIDE ENVIRONMENT CONDUCIVE TO MEET PATIENT
& FAMILY NEEDS
1) ASSESS PAIN Q 4 HR and evaluate within 1 hr post intervention. Complete pain
assessment scale. Anticipate pain needs.
1)
USUALLY UNNECESSARY for patient/family comfort
(All lab work and diagnostic work is discouraged)
1)
Medication regimen focus is the RELIEF OF DISTRESSING SYMPTOMS.
PCAD Care Path Page 1
 PETRIE DIVISIO N
BETH ISRAEL H EALTH CARE SYSTEM
 K ING S H W Y DIVISIO N
NO RTH DIVISIO N
Care Path: PALLIATIVE CARE for
PRE-ADM ISSIO N CO NSIDERATIO N/
ADVANCED DISEASE
ADM ISSIO N CRITERIA
 Disease at Advanced Stage – lim ited
life expectancy

DISCH ARG E O UTCO M ES
 Discharge to Com m unity:
__ H ospice __ H om e Care
__ Alternate Care Facility __H om e
or
 Patient expired/Bereavem ent
resources provided to fam ily
 PETRIE DIVISIO N
CARE SYSTEM
2033
 K ING S H W Y DIVISIO N
CARE for
PRE-ADM ISSIO N CO NSIDERATIO N/
ADM ISSIO N CRITERIA
 Disease at Advanced Stage – lim ited
life expectancy
TIONS/
BAR CODE
PLAN
TREATM ENT/INTERVENTIONS/
ASSESSM ENTS




H CP: Agent___________________
DNR
Prim ary Caregiver______________
Next of K in____________________
START DATE:
1)
2)
3)
4)




CLARIFY GOALS OF PALLIATIVE CARE FOR ADVANCED DISEASE (PCAD)
W ITH PATIENT AND/OR FAM ILY
FACILITATE DISCUSSION & DOCUM ENTATION OF ADVANCE DIRECTIVES:
Identify designated individuals & roles in decision-m aking:
1) Health Care Agent
3) Prim ary Care Giver
2) Durable Power of Attorney
4) Next-of-kin
Identify patient/fam ily preferences regarding:
Health Care Proxy

 Resuscitation status/DNR
Living W ill

INITIATE PHYSICIAN ORDER SHEET/REVIEW DAILY
COM FORT ASSESSM ENT to include
Pain and sym ptom m anagem ent needs

Psychosocial coping , anticipatory grieving, and social/cultural needs

Spiritual issues and distress

VS – None unless useful in prom oting pt/fam ily com fort
ASSESS FOR AND PROVIDE ENVIRONM ENT CONDUCIVE TO M EET PATIENT
& FAM ILY NEEDS
ASSESS PAIN Q 4 HR and evaluate within 1 hr post intervention. Com plete pain
assessm ent scale. Anticipate pain needs.
O NG O ING DAYS:
PAIN M ANAGEM ENT
TESTS/PROCEDURES
M EDICATIONS
FLUIDS/NUTRITION
1)
1)
1)
USUALLY UNNECESSARY for patient/fam ily com fort
(All lab work and diagnostic work is discouraged)
1)
M edication regim en focus is the RELIEF OF DISTRESSING SYM PTOM S.
1) DIET: Selective diet with no restrictions
Nutrition to be guided by patient’s choice of tim e, place, quantities and type of food

desired. Fam ily m ay provide food.
Educate fam ily in nutritional needs of dying patient

2) IVs for sym ptom m anagem ent only
3) TRANSFUSION S for sym ptom relief only
4) INTAKE AND OUTPUT – consider goals of care relative to patient comfort
5) W EIGHTS – consider risks/benefits relative to patient com fort
DISCH ARG E O
RREPEAT CARE PATH DAILY
DOCUM ENT IN:
DAILY PATIENT CARE FLOW SHEET
PROGRESS NOTES
H CP: Agent___________________
DNR
Prim ary Caregiver______________
Next of K in____________________
START DATE:
5)
6)

STAMP ADDRESSOGRAPH
NAME OF SERVICE/ATTENDING/ HOUSE MD:
 Discharge to C
__ H ospice __
__ Alternate C
or
 Patient expire
resources prov
CLARIFY GOALS OF PALLIATIVE CARE FOR ADVANCED
W ITH PATIENT AND/OR FAM ILY
 PETRIE DIVISION
BETH ISRAEL HEALTH CARE SYSTEM
 KINGS HWY DIVISION
NORTH DIVISION
Care Path: PALLIATIVE CARE for
PRE-ADMISSION CONSIDERATION/
ADVANCED DISEASE
ADMISSION CRITERIA
 Disease at Advanced Stage – limited
life expectancy


BETH ISRAEL H EALTH CARE SYSTEM
PETRIE DIVISIO N
 K ING S H W Y DIVISIO N
NO RTH DIVISIO N
Care Path: PALLIATIVE CARE for
PRE-ADM ISSIO N CO NSIDERATIO N/
ADVANCED DISEASE
ADM ISSIO N CRITERIA
 Disease at Advanced Stage – lim ited
life expectancy

DISCHARGE OUTCOMES
 Discharge to Community:
__ Hospice __ Home Care
__ Alternate Care Facility __Home
or
 Patient expired/Bereavement
resources provided to family
PCAD Care Path Page 1
BAR CODE
2033
BAR CODE
2033
PLAN
PLAN
TREATM ENT/INTERVENTIONS/
ASSESSM ENTS
DISCH ARG E O UTCO M ES
 HCP: Agent___________________
 Discharge to Com m unity:
 DNR
__ H ospice __ H om e Care
 H CP: Agent___________________
__ Alternate Care Facility __H om e

Primary
Caregiver______________
 DNR
or
 Patient expired/Bereavem ent
 Prim ary Caregiver______________

Next
of
Kin____________________
 Next of K in____________________
resources provided to fam ily
START DATE:
START DATE:
1)
2)
CLARIFY GOALS OF PALLIATIVE CARE FOR ADVANCED DISEASE (PCAD)
W ITH PATIENT AND/OR FAM ILY
FACILITATE DISCUSSION & DOCUM ENTATION OF ADVANCE DIRECTIVES:
Identify designated individuals & roles in decision-m aking:
1) Health Care Agent
3) Prim ary Care Giver
2) Durable Power of Attorney
4) Next-of-kin
Identify patient/fam ily preferences regarding:
Health Care Proxy

 Resuscitation status/DNR
Living W ill

INITIATE PHYSICIAN ORDER SHEET/REVIEW DAILY
COM FORT ASSESSM ENT to include
Pain and sym ptom m anagem ent needs

Psychosocial coping , anticipatory grieving, and social/cultural needs

Spiritual issues and distress

VS – None unless useful in prom oting pt/fam ily com fort
ASSESS FOR AND PROVIDE ENVIRONM ENT CONDUCIVE TO M EET PATIENT
& FAM ILY NEEDS
ASSESS PAIN Q 4 HR and evaluate within 1 hr post intervention. Com plete pain
assessm ent scale. Anticipate pain needs.
TREATMENT/INTERVENTIONS/
ASSESSMENTS
3)
4)
5)
6)
PAIN M ANAGEM ENT
1)
TESTS/PROCEDURES
1)
M EDICATIONS
1)
FLUIDS/NUTRITION
1)
2)
3)
4)
5)
PAIN MANAGEMENT
STAMP ADDRESSOGRAPH
NAME OF SERVICE/ATTENDING/ HOUSE MD:
O NG O ING DAYS:
ST
NA
O
RREPEAT CARE PATH DAILY
DOCUM ENT IN:
1) CLARIFY GOALS OF PALLIATIVE CARE
ADVANCED
DISEASE (PCAD)
RRE
DAILYFOR
PATIENT
CARE FLOW SHEET
PROGRESS NOTES
WITH PATIENT AND/OR FAMILY
2) FACILITATE DISCUSSION & DOCUMENTATION OF ADVANCE DIRECTIVES:
DO
Identify designated individuals & roles in decision-making:
DA
1) Health Care Agent
3) Primary Care Giver
PR
2) Durable Power of Attorney
4) Next-of-kin
Identify patient/family preferences regarding:
 Health Care Proxy
 Resuscitation status/DNR
Living
Will
USUALLY UNNECESSARY for
ily com
fort
 patient/fam
(All lab work and diagnostic work is discouraged)
3) INITIATE PHYSICIAN ORDER SHEET/REVIEW DAILY
M edication regim en focus is the RELIEF OF DISTRESSING SYM PTOM S.
DIET: Selective diet
no restrictions
4) withCOMFORT
ASSESSMENT to include
Nutrition to be guided by patient’s choice of tim e, place, quantities and type of food

desired. Fam ily m ay provide
food. and symptom management needs
 Pain
Educate fam ily in nutritional needs of dying patient

IVs for sym ptom m anagem ent only
Psychosocial
coping , anticipatory grieving, and social/cultural needs
 ptom relief
TRANSFUSION S for sym
only
INTAKE AND OUTPUT – consider goals of care relative to patient comfort
and
 Spiritual
W EIGHTS – consider risks/benefits
relative to issues
patient com
fort distress
5) VS – None unless useful in promoting pt/family comfort
6) ASSESS FOR AND PROVIDE ENVIRONMENT CONDUCIVE TO MEET PATIENT
& FAMILY NEEDS
1) ASSESS PAIN Q 4 HR and evaluate within 1 hr post intervention. Complete pain
Patient Daily Care Flowsheet
Notes advanced directive decisions daily
 Assesses comfort level using scale of 1 - 5
 Assesses pain q 4 hours and within 1 hour
of intervention
 Assesses Eyes, Lips, Mouth, Breathing,
Nutrition, IV lines, Mobility, Elimination,
Skin/Wound, Sleep, Psychosocial, and
Family Status
 Assessment and Intervention indicated by
initial (check) q shift

Carepath: Palliative Care for Advanced Disease
DAILY PATIENT CARE FLOW SHEET
PCAD Daily Patient Care
Flowsheet, P1
BAR CODE
ADDRESSOGRAPH
016
DATE:
 DNR
 NO DNR
 HCP
 NO HCP
HCP AGENT:
CAREGIVER:
COMFORT ASSESSMENT: Comfort Level Patient states or appears to be
1. Always comfortable 2. Usually comfortable 3. Sometimes comfortable 4. Seldom comfortable
TIME (per MD order)
PATIENT Comfort Level
(Indicate number)
VITAL SIGNS
ONLY AS
ORDERED
P
AI
N
5. Never comfortable
T
P
R
BP
PAIN/RELIEF SCALE
KEY
TIME
NONE
WORST
LOCATION
0 1 2 3 4 5 6 7 8 9 10
PAIN RATING
COMPLETE
RELIEF
RELIEF/SEDATION
NO
RELIEF
SEDATION SCALE
0 Alert
1 Awake but drowsy
2 Drowsy/Easily awakened
3 Sleeping/Easily awakened
4 Sleeping/Difficult to awaken
5 Unarousable
* See Progress Note
A = Assessment
I = Intervention
Check mark = present or done
Needs MD Order
Time
E
Y
E
S
A
I
L
I
P
S
A
Moist/Clear
Inflamed
Dry/Crusted
Routine Care
Artificial tears
Oint/Lubricant
Smooth/moist
Dry/Cracked
Ulcerated
Time
B
R
E
A
T
H
I
N
G
A
Rate: Normal
Rapid
Slow
Rhythm: Reg
Irregular
Depth: Normal
Shallow
Labored
Secretions:None
Mild
Copious
Breath sounds:
Clear
Diminished
Time
N
U
T
R
I
T
I
O
N
A
I
Full meal
> 50%
< 50%
Refused
Nausea/vomiting
NPO
Dysphagia
Diet as tolerated
NG/G tube
Enteral feeding
Feeding set changed
Residual vol-cc’s
PCAD Daily Patient Care
P1
BethFlowsheet,
Israel Health Care System
Carepath: Palliative Care for Advanced Disease
DAILY PATIENT CARE FLOW SHEET
BAR CODE
ADDRESSOGRAPH
016
DATE:
 DNR
 NO DNR
 HCP
 NO HCP
HCP AGENT:
CAREGIVER:
COMFORT ASSESSMENT: Comfort Level Patient states or appears to be
1. Always comfortable 2. Usually comfortable 3. Sometimes comfortable 4. Seldom comfortable
TIME (per MD order)
PATIENT Comfort Level
(Indicate number)
VITAL SIGNS
ONLY AS
ORDERED
P
AI
N
T
P
R
BP
PAIN/RELIEF SCALE
KEY
TIME
NONE
WORST
LOCATION
0 1 2 3 4 5 6 7 8 9 10
PAIN RATING
COMPLETE
RELIEF
RELIEF/SEDATION
* See Progress Note
A = Assessment
I = Intervention
Time
E
Moist/Clear
5. Never comfortable
Check mark = present or done
Time
B
Rate: Normal
NO
RELIEF
0 Alert
1 Awake but drowsy
2 Drowsy/Easily awakened
3 Sleeping/Easily awakened
4 Sleeping/Difficult to awaken
5 Unarousable
Needs MD Order
Time
N
SEDATION SCALE
Full meal
Assistive Device
Ted Stocking(s)
Side Rails Up
E A Voiding qs
Anuria
L
Incontinent Urine
I
Bowel Movement
M
Incontinent feces
I
Diarrhea
N
Constipation
A
Time
T
Time
S A Normal S A Time
Bedbound
Normal
I I Foley Catheter FA
OOBL
Chair
Interrupted Cycle
L
Interrupted
Cycle
Amb w Assist
Insomnia
E
Texas Catheter MI
O
OOBE
ad lib
InsomniaE
BR Privileges
P I Modify
L
N
E
Environment Inc’t Pads
T&P per pt comfort
Relaxation
Y
Enema
P I Modify
ROM q___
Meds as order
Environment
Meds as ordered
Assistive Device
& non-verbal
communication w pt
Y
P A Awake/alert
Respoonds to voice
S
Resp to tactile stim
Y
Unresponsive
C
Oriented
H
Confused
O
Hallucinating
S
Calm
O
C TimeAnxiety
Agitated
I
FTime A Engaged w pt
A Engaged w ptA
Depression
ACoping w loss Coping w loss
Distressed
Spiritual distress
L
Distressed
M
PCAD Daily Patient Care
Flowsheet, P2
M A
O
B
I
L
Time
Bedbound
OOB Chair
Amb w Assist
OOB ad lib
BR Privileges
M A
O
B
I
L
I
I
T
Y
I
I
T
Y
E A
L
I
M
I
N
A
T
I I
O
N
S
K
I
N
A
T&P per pt comfort
ROM q___
Assistive Device
Ted Stocking(s)
Side Rails Up
Voiding qs
Anuria
Incontinent Urine
Bowel Movement
Incontinent feces
Diarrhea
Constipation
Foley Catheter
Texas Catheter
Inc’t Pads
Enema
Meds as ordered
Normal/Intact
Feverish
Diaphoretic
Pressure Ulcer
Stg___
Ostomy site D/I
Edema___
Pruritis
Cool/Mottled
E A
L
I
M
I
N
A
T
I I
O
N
S
K
I
N
A
Ted Stocking(s)
Side Rails Up
Voiding qs
Anuria
Incontinent Urine
Bowel Movement
Incontinent feces
Diarrhea
Constipation
P A
S Catheter
Foley
Texas Catheter
Inc’t Y
Pads
Enema
MedsC
as ordered
H
Normal/Intact
O
Feverish
S
Diaphoretic
Pressure Ulcer
O
Stg___
Ostomy site D/I
C
Edema___
Pruritis
I
Cool/Mottled
Site
A
Dressing_______
Dry & Intact
L
Drain_________
P A
Relaxation
S
Y
C
H
O
S
O
C
I
A
L
Awake/alert
Respoonds to voice
Resp to tactile stim
Unresponsive
Oriented
Confused
Hallucinating
Calm
Anxiety
Agitated
Depression
Spiritual distress
I
Goals of care
Lreviewed
Bereavement
support
S A Normal/Intact
I Emotional support
Verbal/tactile
Goalsstimulation
of care
reviewed
SocialWorker
visit
Encourage
verbal
Chaplain visit
& non-verbal
Encourage verbal
& non-verbal
communication w pt
YFamily Meeting
I
Meds as order
Feverish
Awake/alert K
Diaphoretic
I
Respoonds to voice
Resp to tactile Nstim Pressure Ulcer
I Emotional support
Stg___
Unresponsive
Verbal/tactile
stimulation
Oriented
Ostomy site D/I
SocialWorker visit
Confused Chaplain visit Edema___
Hallucinating
Pruritis
Calm
Cool/Mottled
Comments/Progress Notes
Anxiety
W I Site
Agitated
Dressing_______
O
Depression
Dry & Intact
U
Spiritual distress
I
communication w pt
M
I
S
C
E
L
L
A
N
E
O
U
S
AM Care
PM Care
PresUlcer Prev Plan
Fall Prev Plan
Precautions:
Isolation:
Siderails Up
ID Bracelet
Allergy Bracelet
DNR Bracelet
Post Mortem care
Family Meeting
Bereavement
support
Family Meeting
Bereavement
support
M
I
S
C
E
L
L
A
N
E
O
U
S
AM Care
PM Care
PresUlcer Prev Plan
Fall Prev Plan
Precautions:
Isolation:
Siderails Up
ID Bracelet
Allergy Bracelet
DNR Bracelet
Post Mortem care
Comments/Progress Notes
AM Care
M
PM Care
I
W I
PresUlcer Prev Plan
S
O
U
Fall Prev Plan
C
N
Drain_________
N
Drainage
D
Precautions:
E
Odor
Drainage
D
Ostomy site care
C
Emotional
support
Isolation:
I
L
Tube site care
A
Odor
R
Verbal/tactile
Siderails Up
L
E
Ostomy site care
C
stimulation
PATIENT/FAMILY EDUCATION:
See IPFER
ID Bracelet
A
site care
Avisit
 Revised (See Progress Note)
PCAD Care Path: InitiatedSocialWorker
With PlanTube
Of Care
Reviewed/Continue
Allergy Bracelet
N
R
OTHER NURSING DOCUMENTATION:
DNR Bracelet
Chaplain
visit
E
 I & O SHEET
 RESTRAINT FLOW SHEET
 NEURO-ASSESSMENT
 OTHER________________
E
Post INITIALS
Mortem care
O
SIGNATURE/TITLE
DATE
SHIFT INITIALS
SIGNATURE/TITLE
DATE
SHIFT
1.
6.
U
PATIENT/FAMILY
EDUCATION:
See
IPFER

2.
7.
3.
8.
S
4.
5.
10.
PCAD Care
Path: Initiated Reviewed/Continue With Plan Of Care  Revised (See Progress Note)
Continuum Health Partners, Inc. Department of Pain Medicine & Palliative Care
9.
Comments/Progress Notes
OTHER NURSING DOCUMENTATION:
 I & O SHEET  RESTRAINT FLOW SHEET
 NEURO-ASSESSMENT
 OTHER________________
PCAD: Doctor’s Order Sheet
PCAD ordered by attending physician
 Previous medications, routine labs and tests
should be reviewed and rewritten when
PCAD ordered
 Suggestions for medications but no required
orders

PCAD MD Order Sheet Page 1
Beth Israel Health Care System
DOCTOR’S ORDER SHEET
PALLIATIVE CARE FOR ADVANCED DISEASE
BAR CODE
263
ADDRESSOGRAPH AREA
ADMISSION HT_________ ADMISSION WEIGHT________
ORDERS OTHER THAN MEDICATION/INFUSION
1 Primary Diagnosis:
2 Activate PCAD Care Path
3 Anticipated time on PCAD Care Path:
___ hours ___days
___weeks
___unknown
4 Allergies:
5 Diet:  No restrictions (food may be provided by caregiver)
 NPO
 Other:
6 Activity:  OOB as tolerated  OOB with assistance
7 Vital Signs:  Discontinue
 Daily
 q shift
 q ___hours
8 Comfort Assessment: q __ hr q 2 hr q 4 hr q shift
 q ____ day(s)
9 Weight:  None
 None
 q ________

11 Visiting:
Open visiting, nurse-restrictions apply
 Per routine policy
 Other:
10 I & O:
 Yes
 No
12 DNR
13 PCAD Care Path will include (specify if otherwise):
MEDICATION/INFUSION (Specify route & directions)
1. Assess patient for the following symptoms:
Anxiety & Insomnia
Hiccups
Confusion/Agitation
Nausea/Vomiting
Constipation
Pain
Depressed Mood
Pruritis
Diarrhea
Stomatitis
Dyspnea
Terminal Secretions
Fever
(Noisy Respirations)
See reverse side for suggestions for Pain Management
and Symptom Control
2.
DISCONTINUE ALL PREVIOUS MED ORDERS
3. ORDERS:
The following are medications for consideration in
treating pain and symptoms of patients on PCAD:
PCAD MD Order Sheet Page 2
PAIN MANAGEMENT
For Opioid Naïve Patient:
Morphine Sulfate 15 mg po or 5 mg SQ/IV.
Repeat q 1 hr until pain relief is adequate. Begin Morphine
Sulfate 30 mg po or 10 mg SQ/IV q 4 hr ATC or begin IV
Morphine Sulfate Basal infusion at 2 mg per hour and 2 mg
SQ/IV q 1 hr prn.
DYSPNEA
For Opioid Naïve Patient:
Morphine Sulfate 5 – 15 mg po or 2 – 5 mg SQ/IV. Repeat q
1 hr, if needed. When symptom is improved, begin Morphine
Sulfate 30 mg po or 10 mg SQ/IV q 4 hr ATC; or begin
Morphine Sulfate Basal infusion at 2 mg per hour and 2 mg
SQ/IV q 1 hr prn.
For Opioid-Treated Patient:
If pain uncontrolled, increase fixed schedule dose
by 50%.
For Opioid-Treated Patient:
If dyspnea uncontrolled, increase fixed schedule dose by
50%.
If breathlessness continues, add Lorazepam 0.5mg po or
SQ/IV prn. Repeat q 60 minutes if needed until symptom
intensity declines, then begin 1 mg po/SQ/IV q 3 hr.
Many non-opioid analgesics are available and should be
considered after opioid therapy has been optimized. If pain
remains uncontrolled, consider consult to Department of
Pain Medicine and Palliative Care (Beeper #6702).
ANXIETY & INSOMNIA
Lorazepam 0.5mg po/SQ/IV BID-TIDq HS for anxiety.
Temazepam 15 – 30 mg po q HS for anxiety/ insomnia.
Clonazepam 0.5 – 2 mg po BID-TID for anxiety/myoclonus.
CONFUSION/AGITATION
Haloperidol 0.5 mg po/SQ/IV. Repeat q 30 minutes until
symptom intensity declines.
Haloperidol 0.5 – 5 mg po/SQ/IV q 4 hr prn.
CONSTIPATION
Lactulose 30 ml q 2 hr prn until constipation relieved. When
symptom improves, begin Lactulose 30 ml q 12 hr.
Warm Fleets Enema TIW prn
Additional therapies may include:
Dexamethasone 16 mg po/IV, followed by 4 mg po/IV q 6 hr
Albuterol 2.5 mg via nebulization q 4 hr prn if wheezing
present
FEVER
Acetaminophen 650 mg po/PR q 4 hr prn, and/or
Dexamethasone 1.0 mg po/SQ/IV q 12 hr prn
HICCUPS
Chlorpromazine 10 – 25 mg po/IM TID prn
Haloperidol 0.5 – 2 mg po/SQ/IV TID – QID
INTRACTABLE SYMPTOMS, MANAGEMENT OF
Consider referral to Department of Pain Medicine & Palliative
Care (Beeper # 6702).
PCAD: Palliative Care for
Advanced Disease

Implemented on 3 units
– 4 Karpas (Pain and Palliative Care)
– 9 Dazian (Oncology)
– 7 Linsky (Geriatrics)

3 other units used for comparison
Implementing PCAD
Patient expected to die within one to two weeks
Attending Physician agrees and discusses change in treatment strategy
with patient and family, and orders implementation of care path.
Family meeting/team meeting as necessary to clarify goals of care
and elements of the Care Path.
End -of-Life Care Path implemented
MD Order sheets and clinical guidelines
Comfort care path
Death and Bereavement Care
Follow-up with family
PCAD: Palliative Care for
Advanced Disease

Unit staff did daily/weekly review and
considered the following question:
“Who would you not be surprised to have die
during this hospitalization”

PCAD candidates discussed with
attending physician or designee; PCAD
activation required attending order
PCAD: Palliative Care for
Advanced Disease

PCAD units received in-servicing for
nurses and had access to a specialist
nurse on an ongoing basis

Each PCAD unit had an identified local
champion
Educational Strategies for
PCAD Units
Determine who will do the education
 Use a 4 phase approach

– Introduction to the clinical pathway
– Inservice on the clinical pathway using case
history and actual documents
– Reference Manual on each unit
– PCAD Liaison routinely on unit 1 - 2
times/week
Chart Audit Tool
Based on Fin’s Chart Audit Tool
 Pre and Post audits on pilot and control
units
 Focus on:

–
–
–
–
–
Advanced Directives
Treatments and procedures
Referrals and consults
Pain and symptoms
Discharge planning or Bereavement
Process Audit Tool
Documented/Verbal Process
 Referral to PCAD
 Clarification of goals with patient/family
 Pain and symptoms
 Utilization of documents
 Problems/Issues in implementation of
PCAD
 Staff difficulties with end of life care

Staff Knowledge
Ross’ Palliative Care Survey (1996)
 Nursing Assistant Pain Management Survey
 All unit and house staff surveyed prior to
education about PCAD
 All staff surveyed post 6 months
implementation of PCAD

Family Satisfaction Survey


Planned Afterdeath Interview
–
–
–
–
Advanced Directives
Preferred Place of Death
Discussion of Goals of Care
Last Week of Life
Not implemented due to concerns about
instrument
PCAD: Institutional Barriers
EOL awareness/discomfort/readiness
 Communication deficits
 Unit Resistance
 Knowledge deficit
 Methodology/Documentation

PCAD: First Six Months
Barriers to Using PCAD - Six Month Review
Number of Deaths (Post PCAD to March 2000)
PCAD Referrals (Post PCAD to March 2000)
Patients not referred to PCAD – Post PCAD to February 2000
Patient wanted curative treatment continued
Unexpected death (not identified for PCAD)
Patient identified for PCAD but died before PCAD initiated
Physician resistant or refused pathway
Physician felt already giving care
Unkown
9 Dazian
22
1
7 Linsky
18
4
7
3
2
0
2
3
1
3
1
3
0
3
9 Dazian
34
7 Linsky
21
16
10
Referrals
Hospice Referrals (Post PCAD to March 2000)
Department of Pain Medicine and Palliative Care Referrals
(February 1, 2000 to April 10, 2000)
PCAD: Preliminary Findings
from Chart Review
Pre-PCAD: Symptom assessment and use of
consultations greater on Palliative Care Unit
than other PCAD units or comparison units
 Pre to Post assessment of symptoms
improved on PCAD units and comparison
units
 Some items improved more on PCAD units,
but no statistical significance

PCAD: Preliminary Findings
from Staff Assessments

Significantly increased nurse knowledge
on Palliative Care Quiz
PCAD: Practical Outcomes
After Six Months
All three PCAD units have opted to
continue using PCAD after funding ends
 On the Pain and Palliative Care unit, PCAD
viewed as tool to improve documentation
 On the Oncology Unit, PCAD viewed as
direct means to increased interdisciplinary
discussion about goals of care, increased
staff comfort, identify education needs

PCAD: Practical Outcomes
After Six Months

On the Oncology Unit, hospice referrals and
DPMPC referrals have risen above
historical levels
Insights and Lessons
Culture change requires shift in systems,
access to experts, and local champions
 PCAD can be an avenue to culture change,
even if used sparingly

Insights and Lessons

PCAD can be improved by
– More integration of formal CQI methods
focused on symptoms or other concerns
– More culture-friendly criteria for use (e.g.,
“comfort care”)
– More flexibility in the involvement of
physicians and unit staff
– More testing