Palliative Care Referral/Triage Tool

Palliative Care Referral/Triage Tool Gippsland Region Palliative Care Consortium Clinical Practice Group Title Keywords Ratified Palliative Care Referral/Triage Tool Palliative Care, triage, symptom assessment, PCOC definitions, clinical indicators GRPCC Clinical Practice Group Effective Date March 2015 Review Date Purpose Every two years from effective date The intent of this document is to assist nurses in gathering relevant and up to date clinical information to identify appropriateness of the palliative care referral based on best practice. Enquiries can be directed to GRPCC by email enquiries@grpcc.com.au or phone 03 5623 0684. Acknowledgement Some of the information contained in this document was taken from Latrobe Community Health Service Referral form, the Gold Standards Framework Centre www.goldstandardsframework.org.uk and the palliative care DRAFT triage tool Palliative Care Clinical Network, Department of Health, State Government Victoria. Pages 11 This document is Copyright Gippsland Region Palliative Care Consortium. Please seek permission before modifying and/or reproducing this document Copyright 1

1. Background 2. Purpose It is widely acknowledged there have been inconsistencies among palliative care services state-wide on the content and style of referral forms. In an effort to streamline processes and to assist clinicians in effective palliative care triage the Victorian Department of Health developed and introduced the Service Coordination Tool Templates (SCTT) to facilitate and support palliative care service coordination. 1 The SCTT provides a suite of templates that support the collection and recording of initial contact, initial needs identification, referral and coordinated care planning information in a standardised way. This set of tools however does not provide scope to effectively triage the appropriateness of the referral and timely admission of clients into a palliative care program. In February 2012, the Victorian Department of Health Palliative Care Clinical Network (PCCN) established a triage working group to: explore and coordinate the work related to triage processes in palliative care services, as there is no unified approach in Victoria; and make recommendations to the PCCN to promote consistency of practice across the state. 2 The final recommendation from this working group proposed that further work is required to establish validity and reliability of the tool in different settings plus ongoing funding is required for this substantial piece of work. 3 The Gippsland Region Palliative Care Consortium Clinical Practice Group (GRPCC CPG) has developed a palliative care referral/ triage tool to assist clinicians in effective decision making to ascertain appropriateness of referrals. This tool incorporates a suite of Appendices grounded on the Palliative Care Outcomes Collaboration (PCOC) standardised palliative care language, definitions and clinical assessment tools that measure and assist clinicians in benchmarking client outcomes in palliative care. The PCOC assessment tools meet the Palliative Care Australia (PCA) Standards for Providing Quality Palliative Care for all Australians. 4 The suite of Appendices incorporates: 1 PCOC language, tables, assessment tools and definitions; 5 2 core triage elements of the PCCN Triage tool; 6 and 3 specific clinical indicators to assist clinicians with effective referral/triage processes pertaining to malignancies, non-malignancies and neurodegenerative conditions. 7 The main objectives of the GRPCC CPG Palliative Care Referral/Triage Tool are to: ensure consistency and adherence with the Department of Health directions; 8 promote equity of access; facilitate timely admission into a subregional palliative care service/program for clients with advanced/progressive disease; identify those clients who will benefit from specialised palliative care and consultancy; 9 ascertain and obtain relevant clinical information related to client s progressive disease; and Copyright 2

assist referral sources and services to: effectively determine appropriateness of the referral; ascertain degree of urgency; and ensure timely admission. The Victorian Department of Health Strengthening palliative care: Policy and strategic directions 2011-2015 8 outlines the strategic directions that will improve care for Victorians with a life-threatening illness, their families and carers. The strategic directions are: informing and involving clients and carers caring for carers working together to ensure people die in their place of choice providing specialist care when and where is needed coordinating care across settings providing quality care supported by evidence ensuring support from communities. Strategic direction 4: providing specialist palliative care when and where it is needed provides evidence that early/timely referral to palliative care has been demonstrated to significantly improve clients quality of life and mood and to improve their survival time. Strategic direction 5: coordinating care across settings aims to ensure that effective service coordination is important for palliative care clients and their carers whose time-critical and rapidly changing needs are best met by services communicating and working together. Strategic direction 6: providing palliative care supported by evidence stipulates that implementing clinical guidelines, protocols and tools facilitates improvements in client care, for example: timely referrals to palliative care; reduced admissions to the emergency department; decreased length of stay in hospital; and increase in the proportion of deaths at home in a non-acute care facility. 2.1 Criteria for admission Referral to a palliative care service / program depends on the service and organisational structure. However well-known and accepted components apply to most of the referral/ admission criteria. These include: 1 The client has a progressive life limiting illness for which the primary goal is maximising function and comfort 2 The client and /or family is aware of the diagnosis and prognosis and the referral has been discussed and agreed with client and family 3 The referral is discussed and negotiated with the primary health professional 4 The client/caregiver and family have identified needs that are not being adequately addressed Copyright 3

2.2 Assessment to ascertain appropriateness of the referral There is consensus that referrals should be responded to in a timely manner i.e. within 24-72 hours upon receipt of referral. Effective response to referrals can be achieved through effective triage and gathering of relevant and timely clinical information including reasons for referral. There are important clinical elements to be identified by referral sources and services, which can assist to determine the referral s degree of urgency and client s symptom acuity. These clinical elements would include: physical and/or psychological symptoms causing distress that are not responding to current management interventions; increased risk of complexity of symptom/s and complicated grief; and client s condition is deteriorating rapidly. 2.3 Transfer of care Clients needs change overtime. There will be a proportion of admitted palliative care clients across the sub-regions who no longer require palliative care support. These clients and their caregivers, when pertinent, will be reassessed and then discharged if their condition stabilises. For this to occur palliative care services must ensure effective referral processes to primary care providers to promote smooth transition and scope to re-admit if and when this may be necessary. The following clinical information is to be obtained from clients who may be discharged from the palliative care program: recent investigations (scans, blood tests, imaging) reveal stable disease; known positive response to treatment (medical consultant corroborate that client is in remission); disease is still evident but only progressing slowly with no significant changes to the client s functional status (condition has been stable over a period of time i.e. 3 months); client s symptoms have improved significantly and are being managed without continued palliative care intervention; palliative care reassessment identifies that client and caregiver needs can be more appropriately met by a generalist service; the client is competent to make decisions and request no further input from the palliative care program and the caregiver, if relevant, agrees; and the client moves away from the catchment area. 9, 10 Copyright 4

Palliative Care Service Referral/Triage Form Page 1 of 2 Patient name Date of Birth Gender Male Female Home address Phone home Phone mobile Patient living alone Yes No GP name and phone Main carer Address (if different to patient address) Available home visits Yes No Contactable by phone after-hours Relationship Phone Yes No If main carer and next of kin are not the same, please add comments in page 2 Referral for: Community based service Inpatient unit / hospital admission Residential Aged Care Facility consultation Other Urgency of Referral: Assessment and/or admission requested within 24 hours; (urgent; patient unstable, rapidly deteriorating or in the terminal/dying phase) Two working days; (patient experiencing distressing physical and/or psychosocial symptoms not responding to established palliative care management/ protocols) One week; (patient is stable but seeking palliative care information and support) Pending; (patient has not yet consented to palliative care referral and/or is an inpatient) Please tick if applicable Specific geographical requirements; patient lives alone in remote area and/or is isolated Main diagnosis, treatment to date, further treatment planned; e.g. recent admission(s), radiotherapy, chemotherapy Reasons for referral Active problems/distressing symptoms Other relevant medical conditions and/or infection control issues Please attach copies of recent medical correspondence, recent screening/imaging and blood results Copyright 5

Palliative Care Service Referral/Triage Form Page 2 of 2 Patient N a m e : Date of Birth: Current medications and significant recent changes Known allergies/drug side effects Estimated prognosis Tick one of the following: Days Weeks Months Awareness of diagnosis / prognosis / referral to palliative care Tick as appropriate Patient Family/Carer Diagnosis Yes No Yes No Prognosis Yes No Yes No Referral Yes No Yes No Any other relevant information (include family issues/dynamics, cultural needs, carer s anxiety, other contact details, or health professionals involved, Advance Care Plan / Medical Enduring Power of Attorney) Problem Severity Score 5 Clinician rated 0=Absent, 1=Mild, 2=Moderate, 3=Severe Please apply number to relevant symptom/s: Difficulty sleeping: Appetite problems: Nausea: Bowel problems: Breathing problems: Fatigue: Pain: Psychological / Spiritual: Family / Carer: Other: Phase of Illness 5 (Tick one) Phase 1: Stable Phase 2: Unstable Phase 3: Deteriorating Phase 4: Terminal Phase 5: Bereaved Karnofsky Performance Scale Score 5 Referred by: Nurse Consultant Hospital Community Health Centre Family member Other Name: Organisation: Phone: Nurse taking referral Signature: Date: Copyright 6

Appendix 1 5 Phase Definitions The Palliative care phase is the stage of the patient s illness. Palliative care phases are not sequential and a patient may move back and forth between phases. Palliative care phases provide a clinical indication of the level of care required and have shown to correlate strongly with survival within longitudinal prospective studies. PALLIATIVE CARE Summary of Criteria for Referral people of all ages who are in the last stages of advanced illness for which there is no possibility of cure (this may be over weeks or months); people who have had a recurrence or worsening of symptoms within the framework of a life limiting illness; individuals with a life limiting illness that are experiencing symptom distress despite established palliative care management and protocols; individuals who have consented to being referred to the services and; individuals who are aware of their diagnosis and their prognosis (life expectancy). PALLIATIVE CARE PHASE OF ILLNESS Clinician rated 1. STABLE Symptoms are adequately controlled by established management 2. UNSTABLE Development of a new problem or a rapid increase in the severity of existing problems 3. DETERIORATING Gradual worsening of existing symptoms or the development of new but expected problems 4. TERMINAL Death likely in a matter of days 5. BEREAVED Death of a patient has occurred and the carers are grieving Refer to complete Phase Definitions AKPS Triggers that may guide expeditious referral to specialist palliative care (if client falls within more than two of these categories): Karnofsky below 50 Phase of care: unstable/deteriorating or terminal Frequent presentations to acute care Frequent inpatient palliative care admission Complex symptoms shown to have been refractory to various treatment modalities Complex care needs- difficult family dynamics Home death request Facilitation of end of life care decision making and choices Unmet psychosocial needs requiring allied care support Anticipated loss and grief issues (known past loss and grief experiences that anticipates poor bereavement outcome) Patient/caregiver/family experiencing difficulties accepting the realities of advanced disease prognosis. Australian modified Karnofsky Performance Scale Clinician rated 100 Normal, no complaints or evidence of disease 90 Able to carry on normal activity, minor signs or activity 80 Normal activity with effort, some signs or symptoms of disease 70 Care for self, unable to carry on normal activity or to do active work 60 Occasional assistance but is able to care for most needs 50 Requires considerable assistance and frequent medical care 40 In bed more than 50% of the time 30 Almost completely bedfast 20 Totally bedfast & requiring nursing care by professionals and/or family 10 Comatose, barely rousable Copyright 7

Appendix 2 As obtained from the Palliative Care Clinical Network 6 Core triage elements: the core elements included in the tables below, at a minimum, necessary for the triage process in community and inpatient services. Core elements Date Staff initial Week 1 Week 2 Phase of care Stable = 0, Unstable = 3, Deteriorating = 1, Terminal = 3 Karnofsky < 60 = 1 Daily palliative care clinical requirements Yes = 3 May include, but not limited to, and maybe a combination of these: Syringe driver Specific palliative care issues e.g. risk of or established spinal cord compression Education to client/caregiver to manage care e.g. clexane, colostomy to enable client to get home until they feel confident to manage care independently. Potential for catastrophic event Yes = 1 For example: Catastrophic bleed Acute respiratory obstruction Major seizures Care environment No = 3 Partial = 1 Consider: carer availability, geography/ location and GP and other health services support and availability (i.e. nursing home, boarding house, SRS) Problem severity score (severe=3, moderate=2, mild=1) Pain Other symptoms Psychological/spiritual Family or caregiver Time on waiting list 3 6 Total triage score Maximum = 23 (excluding waiting list score) Triage completed by (name and date) Recommended action > 10 = Category A (24-48 hrs.) 6-9 = Category B ( 2-5 days) < 6 = Category C (6-10 days) Category D = not yet ready for assessment Copyright 8

Appendix 3 Specific clinical indicators to assist clinicians with effective referral / triage processes flexible criteria with some overlaps especially for those with frailty and other comorbidities 7 The surprise question for patients with advanced disease of progressive life limiting conditions Would you be surprised if the patient were to die in the next few months, weeks, days? The answer to this question should be an intuitive one, pulling together a range of clinical, co morbidities, social, existential and other factors that give the whole picture of deterioration. If you would not be surprised, then what measures might be taken to maintain/improve patient s quality of life and comfort now and in preparation for further decline and the terminal phase? a) Cancer rapid or predictable decline Metastatic cancer The single most important predictor in cancer is performance status and functional ability if patients are spending more than 50% of their time in bed/lying down, prognosis is estimated to be about three months or less. b) Organ failure erratic decline Heart Disease At least two of the indicators below: CHF shortness of breath on minimal exertion Patient thought to be in the last year of life by the care team The surprise question Repeated hospital admissions with heart failure symptoms Difficult to manage physical and psychological symptoms despite optimal tolerated therapy. Chronic Obstructive Pulmonary Disease (COPD) At least two of the indicators below: Disease assessed to be severe (e.g.fev1<30% predicted) Recurrent hospital admissions (at least three in the last 12 months due to COPD) Fulfils long term oxygen therapy criteria Dyspnoea symptom score 4/5 after short ambulation or at rest Signs and symptoms of right heart failure Other associated factors i.e. anorexia, recurrent chest infections More than six weeks of systemic steroids for COPD in preceding six months Copyright 9

Renal Disease End Stage Kidney Disease whose condition is deteriorating: Patient for whom the surprise question is applicable Patient has chosen the no dialysis option, has discontinued dialysis or not opting for dialysis if transplant has failed Patients with difficult physical and/or psychosocial symptoms despite optimally tolerated renal replacement therapy Symptomatic renal failure nausea and vomiting, anorexia, reduced functional status, intractable fluid overload, etc. Neurological Diseases Progressive deterioration in physical and/or cognitive function despite optimal therapy Symptoms are complex and difficult to manage Swallowing difficulties (dysphagia) leading to recurrent aspiration pneumonia, sepsis, distressing breathlessness and respiratory failure Speech problems: increasing difficulty in communication and progressive dysphasia. Plus the following: Motor Neurone Disease Marked rapid decline in functional status Recurrent episodes of aspiration pneumonia Increased cognitive dysfunction Weight loss Complex symptoms Communication difficulties Impaired mobility (dyskinesia) and falls Parkinson s Disease Drug therapy (often complex) becoming increasingly ineffective Marked reduction in functional status, requiring increasing assistance with ADLs Dyskinesias, mobility problems and falls Emergence of psychiatric signs and symptoms (depression, anxiety, hallucinations) Difficult to manage physical and psychological symptoms despite optimal tolerated therapy Multiple Sclerosis Significant complex symptoms and medical complications Dysphagia + poor nutritional status Communication difficulties e.g. dysarthria, myopathies + fatigue Increasing cognitive impairment; onset of dementia c) Frailty / Dementia - gradual decline Frailty Multiple co morbidities associated with significant impairment in functional status Karnofsky of 50 or less. Combination of at least three of the following symptoms: weakness low speed walking significant weight loss severe fatigue/exhaustion low physical activity depression Dementia There are many underlying conditions which may lead to degrees of dementia. Triggers to consider that indicate that someone is entering the late stages of dementia are: unable to walk without assistance urinary and faecal incontinence unable to carry on ADLs independently and unable to engage in consistent meaningful conversation. Plus any of the following: weight loss recurrent urinary tract infection recurrent fevers severe pressure sores Copyright 10

References 1. Victorian Department of Health, 2012, Service Coordination Tool Templates http://www.health.vic.gov.au/pcps/sctt.htm 2. Victorian Department of Health, Palliative Care Clinical Network; PCCN workplan / strategy https://www.pcvlibrary.asn.au/download/attachments/2917053/victorian+ Palliative+Care+Clinical+Network+-+Summary+of+the+Implementation+Pla n+for+2012.pdf 3. Chair Triage Working Group Palliative Care Clinical Network, Victorian Department of Health, May 2013, professional communication 4. Palliative Care Australia, 2005, Standards for Providing Quality Care for all Australians http://www.palliativecare.org.au/portals/46/standards%20for%20 providing%20quality%20palliative%20care%20for%20all%20australians.pdf 5. University of Wollongong, Palliative Care Outcomes Collaboration http://ahsri.uow.edu.au/pcoc/index.html 6. Victorian Department of Health, Palliative Care Clinical Network http://health.vic.gov.au/clinicalnetworks/palliative.htm 7. The Gold Standards Framework Centre in End of Life, 4th edition 2011,Prognostic Indicator Guidance http://www.goldstandardsframework.org.uk 8. Victorian Department of Health, 2011, Strengthening palliative care: Policy and strategic directions 2011 2015 9. Loddon Mallee Regional Palliative Care Consortium, May 2011, Timely specialist palliative care service assessment and support guidelines 10. Melbourne City Mission Palliative Care 2012, Separation and Discharge Policy and Procedure Copyright 11