PALLIATIVE CARE: TRENDS AND TREATMENT PATHWAYS

Definition and Models  Challenge of end-of-life care end-of 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. antiWorld 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 diseasedisease-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 Volunteers Occupational Therapist Physician Social Worker PATIENT family Nurses Administration Other therapies Physiotherapist Pharmacist Chaplain

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
       

Prevalence (%)
74.2 70.9 66.1 62.7 61.9 61.0 56.5 53.7
Portenoy et al, 1994

Lack of energy Worrying Feeling sad Pain Feeling Nervous Drowsiness Dry Mouth Sleep Difficulty

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 one-

Caregiver Burden


20% of family members quit work to provide care Financial devastation

30-40% of Americans report loss of most 30family 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

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 Patient 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 doctorthrough 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 ones 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 hospitalservices

HospitalHospital-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


1010-15 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 unit


14 beds, 80% palliative care/hospice occupancy

 Jacob 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

Hospice Home Care

Physician-Organized Routine Office Visits

RN/SW-Organized Case Management/ Triage

Home Care Nursing High Tech Nursing Referral to Other Departments or Services e re a

Hospitalization

Other Dept. Services e vol nteer p c olo i t n tritioni t pa toral care

Referral to Other Inpatient Facilities/ Long-Term Care

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 1999

Principal Investigators
Marilyn Bookbinder, PhD Russell K. Portenoy, MD

CoCo-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

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
 Respect

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

DO

CHECK

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

y Nutrition to be guided by patients choice of time, place, quantities and type of food desired. Family may provide food. y 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 PATIENTS 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: y Patient y Primary caregiver y Grieving process of patient & family PSYCHOSOCIAL SUPPORT: Referral to Social Work y Offer emotional support y Support verbalization and anticipatory grieving y Encourage family caring activities as appropriate/individualized to family situation and culture y Facilitate verbal and tactile communication y Assist family with nutrition, transportation, child care, financial, funeral issues y Assess bereavement needs

PCAD Care Path



SPIRITUAL NEEDS
SPIRITUAL COMFORT ASSESSMENT
y Spiritual supports y Spiritual needs and/or distress

SPIRITUAL SUPPORT: Referral to Chaplain

y Provide opportunity for expression of beliefs, fears, and hopes y Provide access to religious resources y Facilitate religious practices

PCAD Care Path



PATIENT/FAMILY EDUCATION
ASSESS NEEDS AND PROVIDE EDUCATION REGARDING:

y Goals of Palliative Care for Advanced Disease y Physical and psychosocial needs during the dying process y Coping techniques/Relaxation techniques y 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: y Post mortem care observing cultural and religious practices and preferences y Provide for care of patients possessions as per family wishes y Bereavement support for family and staff

BETH ISRAEL HEALTH CARE SYSTEM PETRIE DIVISION NORTH DIVISION KINGS HWY DIVISION Care Path: PALLIATIVE CARE for PRE-ADMISSION CONSIDERATION/ ADVANCED DISEASE ADMISSION CRITERIA Disease at Advanced Stage limited life expectancy

PCAD Care Path Page 1

DISCHARGE OUTCOMES HCP: Agent___________________ DNR Primary Caregiver______________ Next of Kin____________________ START DATE: Discharge to Community: __ Hospice __ Home Care __ Alternate Care Facility __Home or Patient expired/Bereavement resources provided to family

BAR CODE 2033

PLAN TREATMENT/INTERVENTIONS/ ASSESSMENTS

STAMP ADDRESSOGRAPH NAME OF SERVICE/ATTENDING/ HOUSE MD:

ONGOING DAYS:

PAIN MANAGEMENT TESTS/PROCEDURES MEDICATIONS

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: y Health Care Proxy y Resuscitation status/DNR y Living Will 3) INITIATE PHYSICIAN ORDER SHEET/REVIEW DAILY 4) COMFORT ASSESSMENT to include y Pain and symptom management needs y Psychosocial coping , anticipatory grieving, and social/cultural needs y 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) 1) USUALLY UNNECESSARY for patient/family comfort (All lab work and diagnostic work is discouraged) Medication regimen focus is the RELIEF OF DISTRESSING SYMPTOMS.

PCAD Care Path Page 1

BETH ISR A EL H EA LTH C A R E SY STEM PETR IE D IV ISIO N N O R TH D IV ISIO N K IN G S H W Y D IV ISIO N C are Path: PALLIATIVE CARE for PR E-A D M ISSIO N C O N SID ER A TIO N / AD VAN CED D ISEASE A D M ISSIO N C R ITER IA D isease at A dvanced Stage lim ited life expectancy D ISC H A R G E O U TC O M ES

BAR CODE 2033

IN for

PLA N

TREA TM EN T/IN TERV EN TIO N S/ A SSESSM EN TS

I I I N PR E I I N N I ERATI N/ A D M I I N R IT E R IA D isease at A dva ced tage lim ited life e ecta cy

1) 2) 3) 4) 5) 6)

H C P: A gent___________________ DNR Prim ary C aregiver______________ N ext of K in____________________ STA R T D A TE:

D ischarge to C om m unity: __ H ospice __ H om e C are __ A lternate C are Facility __H om e or Patient expired/Bereavem ent resources provided to fam ily

I I I N

STA M P A D D RESSO G RA PH N A M E O F SERV ICE/A TTEN D IN G / H O U SE M D :

O N G O IN G D A Y S:

PA IN M A N A G EM EN T TESTS/PRO CED U RES M ED ICA TIO N S

FLU ID S/N U TRITIO N

P: A ge t___________________ DNR Prim ary aregiver______________ N e t of i ____________________ TART DATE:

1) 1) U SU A LLY U N N ECESSA RY for patient/fam ily com fort (A ll lab work and diagnostic w ork is discouraged) 1) M edication regim en focus is the RELIEF O F D ISTRESSIN G SY M PTO M S. 1) D IET: Selective diet w ith no restrictions N utrition to be guided by patients choice of tim e, place, quantities and type of food y desired. Fam ily m ay provide food. Educate fam ily in nutritional needs of dying patient y 2) IV s for sym ptom m anagem ent only 3) TRA N SFU SIO N S for sym ptom relief only 4) IN TA K E A N D O U TPU T consider goals of care relative to patient comfort 5) W EIG H TS consider risks/benefits relative to patient com fort

CLA RIFY G O A LS O F PA LLIA TIV E CA RE FO R A D V A N CED D ISEA SE (PCA D ) RREPEA T CA RE PA TH D A ILY W ITH PA TIEN T A N D /O R FA M ILY FA CILITA TE D ISCU SSIO N & D O CU M EN TA TIO N O F A D V A N CE D IRECTIV ES: D O CU M EN T IN : Identify designated individuals & roles in decision-m aking: D A ILY PA TIEN T CA RE FLO W SH EET 1) H ealth Care A gent 3) Prim ary Care G iver PRO G RESS N O TES 2) D urable Pow er of A ttorney 4) N ext-of-kin Identify patient/fam ily preferences regarding: H ealth Care Proxy y y Resuscitation status/D N R Living W ill y IN ITIA TE PH Y SICIA N O RD ER SH EET/REV IEW D A ILY CO M FO RT A SSESSM EN T to include Pain and sym ptom m anagem ent needs y Psychosocial coping , anticipatory grieving, and social/cultural needs y Spiritual issues and distress y V S N one unless useful in prom oting pt/fam ily com fort A SSESS FO R A N D PRO V ID E EN V IRO N M EN T CO N D U CIV E TO M EET PA TIEN T & FA M ILY N EED S A SSESS PA IN Q 4 H R and evaluate w ithin 1 hr post intervention. Com plete pain assessm ent scale. A nticipate pain needs.

DI

ARGE

D isc arge to o __ os ice __ __ A lter ate a or Patie t e ired reso rces rovi

TI

1) 2)

C LA R I A LS A LLIA TI CARE R A D V A N C ED D W IT A TIEN T A N D / R A M ILY A C ILITA TE D ISC U SSI N D O C U M EN TA TIO N O F A D V A N

BETH ISRAEL HEALTH CARE SYSTEM PETRIE DIVISION NORTH DIVISION KINGS HWY DIVISION Care Path: PALLIATIVE CARE for PRE-ADMISSION CONSIDERATION/ ADVANCED DISEASE ADMISSION CRITERIA Disease at Advanced Stage limited life expectancy
BETH ISR A EL H EA LTH C A R E SY STEM PETR IE D IV ISIO N N O R TH D IV ISIO N K IN G S H W Y D IV ISIO N C are Path: PALLIATIVE CARE for PR E-A D M ISSIO N C O N SID ER A TIO N / AD VAN CED D ISEASE A D M ISSIO N C R ITER IA D isease at A dvanced Stage lim ited life expectancy

DISCHARGE OUTCOMES

BAR CODE 2033

PCAD Care Path Page 1

HCP: Agent___________________ D ischarge to C om m unity: DNR __ H ospice __ H om e C are __ A lternate C are Facility __H om e H C P: A gent___________________ Primary Caregiver______________ or DNR Patient expired/Bereavem ent Prim ary C aregiver______________ Next of Kin____________________ resources provided to fam ily N ext of K in____________________ STA R T D A TE: O N G O IN G D A Y S: START DATE:
D ISC H A R G E O U TC O M ES 1) 2)

BAR CODE 2033

PLA N PLAN

STA M P A D D RESSO G RA PH N A M E O F SERV ICE/A TTEN D IN G / H O U SE M D :

Discharge to Community: __ Hospice __ Home Care __ Alternate Care Facility __Home or Patient expired/Bereavement resources provided to family

STAM NAME

ONG

TREA TM EN T/IN TERV EN TIO N S/ A SSESSM EN TS

TREATMENT/INTERVENTIONS/ ASSESSMENTS
3) 4)

5) 6) PA IN M A N A G EM EN T TESTS/PRO CED U RES M ED ICA TIO N S FLU ID S/N U TRITIO N 1) 1) 1) 1)

2) 3) 4) 5)

PAIN MANAGEMENT

1) CLARIFY GOALS OF PALLIATIVE CARE FOR ADVANCED DISEASE (PCAD) RREPE WITH PATIENT AND/OR FAMILY 2) FACILITATE DISCUSSION & DOCUMENTATION OF ADVANCE DIRECTIVES: DOCU Identify designated individuals & roles in decision-making: DAIL 1) Health Care Agent 3) Primary Care Giver PROG 2) Durable Power of Attorney 4) Next-of-kin Identify patient/family preferences regarding: y Health Care Proxy y Resuscitation status/DNR U SU A LLY U N N ECESSA RY for patient/fam ily com fort y Living Will (A ll lab work and diagnostic w ork is discouraged) 3) INITIATE PHYSICIAN ORDER SHEET/REVIEW DAILY M edication regim en focus is the RELIEF O F D ISTRESSIN G SY M PTO M S. D IET: Selective diet w ith no restrictions 4) COMFORT ASSESSMENT to include N utrition to be guided by patients choice of tim e, place, quantities and type of food y desired. Fam ily m ay provide food. and symptom management needs y Pain Educate fam ily in nutritional needs of dying patient y IV s for sym ptom m anagem ent only y Psychosocial coping , anticipatory grieving, and social/cultural needs TRA N SFU SIO N S for sym ptom relief only IN TA K E A N D O U TPU T consider goals of care relative to patient comfort y Spiritual patient com fort W EIG H TS consider risks/benefits relative to 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.

CLA RIFY G O A LS O F PA LLIA TIV E CA RE FO R A D V A N CED D ISEA SE (PCA D ) RREPEA T CA RE PA TH D A ILY W ITH PA TIEN T A N D /O R FA M ILY FA CILITA TE D ISCU SSIO N & D O CU M EN TA TIO N O F A D V A N CE D IRECTIV ES: D O CU M EN T IN : Identify designated individuals & roles in decision-m aking: D A ILY PA TIEN T CA RE FLO W SH EET 1) H ealth Care A gent 3) Prim ary Care G iver PRO G RESS N O TES 2) D urable Pow er of A ttorney 4) N ext-of-kin Identify patient/fam ily preferences regarding: H ealth Care Proxy y y Resuscitation status/D N R Living W ill y IN ITIA TE PH Y SICIA N O RD ER SH EET/REV IEW D A ILY CO M FO RT A SSESSM EN T to include Pain and sym ptom m anagem ent needs y Psychosocial coping , anticipatory grieving, and social/cultural needs y Spiritual issues and distress y V S N one unless useful in prom oting pt/fam ily com fort A SSESS FO R A N D PRO V ID E EN V IRO N M EN T CO N D U CIV E TO M EET PA TIEN T & FA M ILY N EED S A SSESS PA IN Q 4 H R and evaluate w ithin 1 hr post intervention. Com plete pain assessm ent scale. A nticipate pain needs.

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

Beth Israel Health Care System

Carepath: Palliative Care for Advanced Disease
DAILY PATIENT CARE FLOW SHEET

DATE:
DNR

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

PCAD Daily Patient Care Flowsheet, P1

BAR CODE

ADDRESSOGRAPH

016

NO DNR

HCP

NO HCP

HCP AGENT:

CAREGIVER: 5. Never comfortable

T P R BP PAIN/RELIEF SCALE KEY

NONE WORST

SEDATION SCALE
0 Alert 1 Awake but drowsy 2 Drowsy/Easily awakened 3 Sleeping/Easily awakened 4 Sleeping/Difficult to awaken 5 Unarousable

P AI N

TIME LOCATION

0 1 2 3 4 5 6 7 8 9 10
PAIN RATING RELIEF/SEDATION COMPLETE RELIEF NO RELIEF

* See Progress Note A = Assessment I = Intervention Check mark = present or done Needs MD Order

Time
E Y E S A

Time
B R E A T H I N G

Time
N U T R I T I O N I A

Moist/Clear Inflamed Dry/Crusted

Routine Care Artificial tears Oint/Lubricant

L I P S

Smooth/moist Dry/Cracked Ulcerated

Routine Care

Rate: Normal Rapid Slow Rhythm: Reg Irregular Depth: Normal Shallow Labored Secretions:None Mild Copious Breath sounds: Clear Diminished Absent Crackles

Full meal > 50% < 50% Refused Nausea/vomiting NPO Dysphagia

Diet as tolerated NG/G tube Enteral feeding

Feeding set changed

Residual vol-ccs Placement check

Meds as ordered

PCAD Daily Patient Care Flowsheet, P1 Beth 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: 5. Never comfortable 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 T P R BP PAIN/RELIEF SCALE KEY
NONE WORST

SEDATION SCALE
0 Alert 1 Awake but drowsy 2 Drowsy/Easily awakened 3 Sleeping/Easily awakened 4 Sleeping/Difficult to awaken 5 Unarousable

P AI N

TIME LOCATION

0 1 2 3 4 5 6 7 8 9 10
PAIN RATING RELIEF/SEDATION COMPLETE RELIEF NO RELIEF

* See Progress Note

A = Assessment
B R E

I = Intervention

Check mark = present or done

N U T A

Needs MD Order

Time
E Y E A

Time
A Rate: Normal Rapid

Time
Full meal > 50%

Moist/Clear Inflamed

PCAD Daily Patient Care Flowsheet, P2

E L I M I N A

Side Rails Up

S K I N

W I O

Ostomy site D/I Edema___ Pruritis Cool/Mottled Site Dressing_______

Comments/Progress Notes

O H RN RIN D C MN A IO : T E US G OU E T T N I& S E T O HE R S R IN F O S E T E T A T L WH E S N T R /T L IG A U E IT E

D T S IF IN IA S A E H T IT L

02

01

Normal/Intact Feverish Diaphoretic Pressure Ulcer Stg___

SIGNATURE/TITLE

DATE

SHIFT

INITIALS

SIGNATURE/TITLE

DATE

1. 2. 3. 4. 5.

P T N /F M YE U A IO U SeeIP E A IE T6.A IL D C T N: FR 7. P A CrePt CD a a

8. 9. 10. Continuum ealth artners, Inc. Department o ain Medicine

In te R v wd o tin e it Care n fCre itia d e ie e /Cn u alliative P la a

'

&

$#

"!



Foley Catheter Texas Catheter Inct Pads Enema Meds as ordered

  

E A L I M I N A T I I O N

Voiding qs Anuria Incontinent Urine Bowel Movement Incontinent feces Diarrhea Constipation

Nrm tact o al/In F erish ev A M AM Care T I M Care D h retic iap o Family Meeting I I S resUlcer rev lan O C Fall rev lan P reU ressu lcer E Bereavement N recautions: Enema I L Isolation: S __ support Cordered UnresponsiveEmotional supporttg _ Meds as Verbal/tactile L Siderails Up stimulation A ID Bracelet Oriented H O y /I N sto Cm en ro ressNtes o m ts/P g o Social orker visit m siteD Allergy Bracelet S A Normal/Intact Cha lai visit E DNR Bracelet Confused O Eem _ d a_ _ K Feverish O ost Mortem care Hallucinating S I Diaphoretic P ritis ru N ressure Ulcer S Calm O Stg___ Co o o l/Mttled Ostomy site D/I Comments/ rogress Notes Anxiety AM Care C M Edema___ ite WI S ruritis Agitated PM Care I I Cool/Mottled D g___ ressin _ _ _ _ O W I Site Depression PresUlcer Prev Plan A S O Dressing_______ D In ry tact U U Dry Intact Spiritual distress Fall Prev Plan L C N Drain_________ D _____ rain _ _ _ _ N D Drainage Precautions: E Odor rain e D C Ostomy site care Isolation: I Emotional support D ag L A Tube site care Oo dr R Verbal/tactile Siderails Up L E O m sitecare sto y stimulation C PATIENT/FAMILY EDUCATION : See IPFER ID Bracelet A b I itiat SocialWorker Ait Plan TCare Reviewed/Continuevisit fu esitecare ed ( ee Progress ote) Revi PCAD Car Pat Allergy Bracelet N OTHER NURSING DOCUMENTATION: R DNR Bracelet Chaplain visit E I & O SHEET RESTRAINT FLOW SHEET NEURO-ASSESSMENT OTHER________________ E Post Mortem care O
     

S A P A Awake/alert K C I I Respoonds to voice S Foley Catheter A Texas Catheter L Resp to tactile N stim Y Inct ads

O S O

T Y

ROM q___ Assistive Device Ted Stocking(s)

Side Rails Up Voiding qs Anuria Incontinent Urine Bowel Movement Incontinent eces Diarrhea Constipation

Meds as order

Y C

Bereavement support

reviewed Scia verbal o lWrk isit Encourage o erv & non-verbal Cala v h i isit communication w pt

SHIFT

INITIALS

per pt com ort

Ted Stocking(s)

P Relaxation A S

Awake/alert Respoonds to voice Resp to tactile stim Unresponsive Oriented Con used allucinating Calm Anxiety Agitated Depression Spiritual distress

Y Meeting I Family

T Y

Encourage verbal non-verbal communication w pt

M O B I L

M A O B I L

Time Bedbound OOB Chair Amb w Assist OOB ad lib BR rivileges

5 3

w e/alert P A A ak R o n stov ice esp o d o S R totactilestim esp Y Uresp n e n o siv C O ted rien H Cnu d o se O allu atin cin g S C alm O Ax C Time n iety Aitated g I Time F A Engaged w pt A Engaged w pt D w loss ep n Coping A w lossA Copingressio Distressed Siritu istress p al L Distressed d M
I

F ilyM g am eetin B em t ereav en su p rt po

I oals o care L reviewed

mtio al p o I E o n su p rt V al/tactile erb Goals oucare stimlatio n

M I S C E L L A N E O U S

AC M are PC M are P lcer P P resU rev lan F P P all rev lan P tio s: recau n Iso n latio : S erailsU id p IDB racelet A yB llerg racelet D RB N racelet Pst Mrtemcare o o

Rv e ( e P g s o ) e is d e ro re s te

N U O S ES E T E R -AS S MN

O H R_ _ _ _ _ _ _ _ T E ________ D T S IF IN IA S AE H T IT L

S N T R /T L IG A U E IT E

R M_ _ O q_ A e D ice ssistiv ev edS ck g T to in (s) S eR U id ails p o in s E A Vid gq Au n ria L In n en U e co tin t rin I o el o em t M Bw Mv en In n en eces co tin t I D ea iarrh N Cn atio o stip n A Time T Time S A Normal S A Time edbound Normal o ath F I OOBL Chair L Interrupted Interrupted Cycle ICycle FleyC eter A Amb w Assist E Insomnia T asC eter M ex ath O Insomnia OOBElib ad E I BR Privileges P I Modi y L In P s ct ad N E Environment T P per pt com ort Relaxation n a P I Modi y Eem ROM q___ Environment Meds as order M saso ered Assistive Device ed rd T Y
7

M saso er ed rd

rev ed iew Eco ra ev al n u g erb n n erb o -v al co mn nwp m u icatio t

PCAD: Doctors 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

Beth Israel

DOCTORS ORDER SHEET PALLIATI E CARE OR ADVANCED DISEASE BAR 263

E D BA BA

ealth Care Order PCAD MDSystem Sheet Page 1

ADMI

HT_________ ADMI

I H T________

ADDRESSOGRAPH AREA

ORDERS OTHER THAN 1 Pri r Di sis: Acti t PCAD Car Path

EDICATION/INFUSION

Antici at ti n PCAD Car Path: ___ h rs ___ ays ___ ks 4 All r i s:

Activity: OOB as tolerated OOB with assistance 7 Vital Signs: Discontinue q shift q ___hours Daily Comfort Assessment: q __ hr eight: 10 I & O: None None q hr q 4 hr q shift

q ____ day(s) q ________

11 Visiting: Open visiting, nurse-restrictions apply Per routine policy Other: 12 DNR Yes No 13 PCAD Care Path will include (specify if otherwise): Psychosocial Care Social ork Referral Spiritual Care Chaplaincy Referral

I HG

Di t:

o r strictions (food a y PO Other:

@@

@@

___ nknown

rovided y caregiver)

MEDICATION/INFUSION (Specif route & directions) 1. Assess atient for the following symptoms: Anxiety & Insomnia Hicc ps Conf sion/Agitation ausea/ omiting Constipation Pain Depressed Mood Pruritis Diarrhea Stomatitis Dyspnea Terminal Secretions ever ( oisy Respirations) See reverse side for suggestions for Pain Management and Symptom Control . DISCONTINUE ALL PREVIOUS MED ORDERS

. ORDERS:

The following are medications for consideration in treating pain and symptoms of patients on PCAD:
PAIN MANAGEMENT For Opioid Nave Patient: Morp ine Sulfate 15 mg po or 5 mg SQ/IV. Repeat q 1 r until pain relief is adequate. Begin Morp ine Sulfate 30 mg po or 10 mg SQ/IV q 4 r ATC or begin IV Morp ine Sulfate Basal infusion at 2 mg per our and 2 mg SQ/IV q 1 r prn. For Opioid-Treated Patient: If pain uncontrolled, increase fixed sc edule dose by 50%. Many non-opioi anal s ics ar availabl and should be considered after opioid therapy has been opti ized. If pain remains uncontrolled, consider consult to Department of a in Medicine and a lliative a re (Beeper #6702). ANXIETY INSOMNIA Lorazepam 0.5mg po/SQ/IV BID-TIDq S for anxiety. Temazepam 15 30 mg po q S 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 r prn.
S R R U RQ T T P

PCAD MD Order Sheet Page 2

DYSPNEA For Opioid Nave Patient: Morp ine Sulfate 5 15 mg po or 2 5 mg SQ/IV. Repeat q 1 r, if needed. W en symptom is improved, begin Morp ine Sulfate 30 mg po or 10 mg SQ/IV q 4 r ATC; or begin Morp ine Sulfate Basal infusion at 2 mg per our and 2 mg SQ/IV q 1 r prn. For Opioid-Treated Patient: If dyspnea uncontrolled, increase fixed sc edule 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, t en begin 1 mg po/SQ/IV q 3 r. Additional therapies may include: Dexamet asone 16 mg po/IV, followed by 4 mg po/IV q 6 r Albuterol 2.5 mg via nebulization q 4 r prn if w eezing present FEVER Acetaminop en 650 mg po/PR q 4 r prn, and/or Dexamet asone 1.0 mg po/SQ/IV q 12 r prn HICCUPS C lorpromazine 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 ain Medicine & Care (Beeper # 6702).

To prevent constipation: Senokot 1 2 tabs po BID and

IV HYDRATION Consider decreasing IV rate to 0.5

1 liter/24 r

CONSTIPATION Lactulose 30 ml q 2 r prn until constipation relieved. W en symptom improves, begin Lactulose 30 ml q 12 r. Warm Fleets Enema TIW prn

alliative

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 innurses 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 Fins 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

Referrals Hospice Referrals (Post PCAD to March 2000) Department of Pain Medicine and Palliative Care Referrals (February 1, 2000 to April 10, 2000) 9 Dazian 34 16 7 Linsky 21 10

PCAD: Preliminary Findings from Chart Review



PrePre-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., culturecomfort care) More flexibility in the involvement of physicians and unit staff More testing