N ATIONAL H EALTH N EEDS A SSESSMENT FOR P ALLIATIVE C ARE P HASE 2: A CCESS TO P ALLIATIVE C ARE IN N EW Z EALAND Wayne Naylor Director of Nursing Hospice Waikato 1

E STIMATED NEED FOR PALLIATIVE CARE IN N EW Z EALAND, 2011 –

M ODEL OF PALLIATIVE CARE NEED WITHIN A POPULATION OF PATIENTS WHO HAVE A LIFE - LIMITING OR LIFE - THREATENING CONDITION ( ADAPTED FROM P ALLIATIVE C ARE A USTRALIA, 2005) Pg % 39.8% 41.1% 6.5% - palliative care not feasible % of all deaths 3

P HASE 2: A CCESS TO P ALLIATIVE C ARE IN N EW Z EALAND Analysis of primary palliative care provider capability Survey of Palliative Care Services 37 hospice services 16 DHB hospital palliative care services Description of service functions and staff roles Comparison with capability recommendations (current vs. ideal) Characteristics of palliative care patients Comparison with mid-range estimate, ‘all deaths’ group and NZ population Analysis of palliative care service workforce Workforce projections 4

P RIMARY P ALLIATIVE C ARE P ROVIDER C APABILITY Providers included: General Practice Aged Residential Care Public Hospitals District Nursing Services Home Health Care Agencies Other indicators: End of Life Care Pathway Implementation Access to Equipment Education and Training 5

P RIMARY P ALLIATIVE C ARE P ROVIDER C APABILITY No specific data on palliative care service provision ‘Proxy’ measures of capability used Readily available data from published reports or other data collections Examples GPs Cornerstone accreditation data Primary Care Palliative Care Programme evaluations ARC HealthCERT data Eldernet database LCP Status report DN Services District Nursing Services in New Zealand in

E XAMPLE – G ENERAL P RACTICE RNZCGP Cornerstone accreditation programme Evaluates GPs against Aiming for Excellence Standard for New Zealand General Practice 2009 (3rd edition) Specific indicator for palliative care - C.8.2 The practice provides services to help patients and families with special care to meet end of life needs December general practices in New Zealand 865 registered with Cornerstone programme 111 GPs withdrew from accreditation process accreditation expired for (48%) currently accredited and therefore meeting the palliative care indicator 7

E XAMPLE – G ENERAL P RACTICE C.8.2 – 1The practice has a system to identify patients that have special end of life needs. C.8.2 – 2All patients should be able to access their doctor or an informed deputy at all times. C.8.2 – 3The practice can describe how it follows up patients, families or caregivers after a significant life event or bereavement if appropriate. RNZCGP Cornerstone accreditation programme 8

E XAMPLE – G ENERAL P RACTICE Cornerstone Accreditation - All Accredited GPs (Jan Jul 2010) 9

E XAMPLE – G ENERAL P RACTICE Primary Care Palliative Care Programme evaluations Dedicated funding stream allows GPs to see patients free of change, including home visits and extended consultations. Initial full assessment and on-going care coordination Two programmes also incorporate Advance Care Planning as part of the initial consultation. Specialist palliative care support Provided by a local specialist palliative care service. Mandatory education GPs must undertake a standardised education programme. Education sessions supported by a resource package. 10

P RIMARY P ALLIATIVE C ARE P ROVIDER C APABILITY Overall, PPCPs appear to have a reasonable level of capability based on data and reports reviewed However, it is impossible to make firm conclusions there is limited or no specific data for these services on: Number or characteristics of people who receive palliative care Training and qualifications in palliative care Quality of palliative and end of life care provided Satisfaction of patients and family/whanau with services received 11

P ALLIATIVE C ARE S ERVICES Survey of all palliative care services 37 Hospice palliative care services 16 Hospital Palliative Care Services (including 2 DHB District Nursing palliative care services) Data for period 1 July 2010 to 30 June % response from hospices 94% response from HPCS Data summarised and analysed by DHB Region Where possible, comparisons were been made with HNZ and HPCNZ Capability recommendations 12

P ALLIATIVE C ARE S ERVICE C APABILITY Hospice NZ – Hospice Capability HPCNZ Capability Framework ‘ will have ’ functions and roles are considered core palliative care service components and should be provided by all palliative care services ‘ will have access to ’ functions and roles are also core service components, but may not necessarily be provided directly by the palliative care service ‘ could offer ’ are functions and roles that could be provided if resources allow, but are not considered core to the delivery of a palliative care service 13

C ATEGORIES OF HOSPICE S ERVICE IN NZ Comprehensive hospice palliative care service these services provide both community-based care and have a dedicated hospice inpatient unit. These hospices offer a wide range of clinical services (including all core service components of HNZ capability recommendations) and employ a range of qualified health care staff. n = 19 Community hospice palliative care service these services primarily provide community-based care but may also have access to inpatient beds in a residential care facility or community hospital. In some cases the hospice service owns or funds the beds and provides staff support, but the main staff providing inpatient care are not specialised in hospice palliative care. These hospices offer a wide range of clinical services (including all or most of the core service components of HNZ capability recommendations) and employ a range of qualified health care staff. n =12 Hospice palliative care support service these services provide community-based support but do not employ qualified health care staff and so do not provide any clinical care. These services offer a limited range of non-clinical services, which are often provided by volunteers. People under the care of a Hospice palliative care support service are also likely to be receiving clinical care from another hospice service or primary palliative care provider. n =6 14

P ERCENTAGE OF SERVICES PROVIDING EACH HNZ H OSPICE C APABILITY COMPONENT, BY CATEGORY OF SERVICE HNZ Capability Components Category of service 123 Will have Clinical Functions Community care100% Assessment100% 40% Care planning100% 40% Care coordination95%100%40% Liaison roles100%75% 20% Education100%50% 80% Bereavement care100%75% 80% End of life pathway95%42% 20% Quality improvement100%83% 20% Clinical data collection100%75% 20% Roles Registered Nurses100% 0% Medical Officer or GP100%33% 0% Spiritual Care100%42% 60% Social Work89%25% 0% Counselling95%67% 60% Cultural Advisor79%67% 0% Volunteer Manager / Coordinator100%67% 20% Volunteer workforce100%75% 60% 15

P ERCENTAGE OF SERVICES PROVIDING EACH HNZ H OSPICE C APABILITY COMPONENT, BY CATEGORY OF SERVICE HNZ Capability Components Category of service 123 Will have access to Functions Inpatient care100%50% 0% Equipment (community access)89%83% 100%* Respite care100%75% 20% Home help / personal cares84%75% 20% 24/7 medical/nursing advice and care 95%58% 40% Paediatric and young person PC79%58% 20% Interpreter service89%75% 0% Roles Specialist Medical89%58% 0% Occupational Therapy37%8% 0% Physiotherapy37%17% 0% Pharmacist26%0% Dietician5%0% Speech Language Therapist0% 16

P ERCENTAGE OF SERVICES PROVIDING EACH HNZ H OSPICE C APABILITY COMPONENT, BY CATEGORY OF SERVICE HNZ Capability Components Category of service 123 Could offer Functions Hospital in-reach37%58% 0% Day care programme74%42% 60% Outpatient care95%50% 0% Group support (patients)79%67% 0% Family/carer programme84%42% 20% Role Complementary Therapist32%25% 0% 17

P ATIENT VOLUMES (1 J ULY 2010 – 30 J UNE 2011) Comprehensive and Community PC Services (n=31) 11,292 new referrals 10,738 accepted 4.3% of referrals are declined (range of %) 3,083 ongoing care 13,821 total patients receiving hospice care from 1 July 16,837 people were estimated to be in the group that would have benefitted from palliative care during this period (HNA Phase 1) 2,889 people (17% of mid-range estimate) who may have benefitted from palliative care were not referred to a hospice palliative care service 18

P ATIENT VOLUMES VS. ESTIMATE OF NEED 19

A VERAGE LENGTH OF CARE EPISODE 20

R ESOURCED ADULT PALLIATIVE CARE BEDS DHB Location of resourced bed Hospice IPUARCHospital Total beds:100,000 pop Northland Waitemata Auckland Counties Manukau Waikato* Lakes Bay of Plenty Tairawhiti Hawke's Bay Taranaki MidCentral Whanganui Capital and Coast Hutt Valley Wairarapa Nelson Marlborough West Coast Canterbury South Canterbury Otago Southland Total

A VERAGE LENGTH OF STAY National ALOS = 8.3 +/-.09 days, median ALOS 8 days. Minimum ALOS = 1 day or less, maximum ALOS = 195 days 22

B ED OCCUPANCY % National average bed occupancy 79 +/- 9.2% Lowest occupancy = 28.5%, highest occupancy = 151% 23

P ALLIATIVE C ARE B EDS – ALLOCATION BY NEED DHB Total Projected Adult Population 2011 Reported Palliative Care Beds 2011 Bed allocation by need Northland 113, Waitemata 394, Auckland 349,08016 Counties Manukau 337, Waikato 260, Lakes 72,51004 Bay of Plenty 154, Tairawhiti 31,81022 Hawke's Bay 110,71089 Taranaki 79,53086 MidCentral 122, Whanganui 45,89054 Capital and Coast 221, Hutt Valley 103, Wairarapa 29,78002 Nelson Marlborough 104, West Coast 24,68002 Canterbury 380, South Canterbury 42,42074 Otago 143, Southland 83,80085 DHB Totals3,206,

H OSPICE PATIENTS M ID - RANGE ESTIMATE Age 79% > 60 years old, 29% > 80 Gender 49% male Ethnicity 75.5% European, 10% Maori, 3.9% Pacific Diagnosis 79% cancer (range 62% - 88%) Reason for episode of care end 75% death, 17% discharged Place of death 33% private residence, 25% hospice inpatient, 21% ARC, 16% hospital Age 84% > 60 years old, 43% > 80 Gender 50% male Ethnicity 83.9% European, 9.8% Maori, 3.6% Pacific Diagnosis 42.1% cancer Place of death 17% private residence, 9% hospice inpatient, 25% ARC, 46.9% hospital 25

H OSPITAL PC S ERVICE C APABILITY AND C APACITY Summarised by category of service and by DHB region Capability components (functions and roles) Type of service Access after hours Patient volumes Length of care episode EoL care pathway Education programme 26

P ERCENTAGE OF SERVICES PROVIDING EACH HPCNZ C APABILITY COMPONENT HPCNZ Capability Functions and Roles % of all HPCS Will have the following clinical functions 5 day on-site service100% After-hours telephone cover54% Advanced assessment and care planning92% Liaison with primary care, aged care, hospital teams, hospice, pain services 100% Input into family meetings92% Input into discharge planning100% Input into advance care planning92% Input into end-of-life care pathway implementation77% the following non- clinical functions Clinical education100% Supervision/training (other staff)85% Leadership and strategic planning100% Quality improvement100% Research/audit85% Clinical data collection92% Access to clinical supervision (HPCT staff)62% Appropriate networks and engagement100% effective working relationships with Other specialist palliative care services100% Bereavement support services77% Hospital medical and nursing staff100% Liaison Psychiatry, psych-oncology services100% Pain Service – acute and chronic92% Specialist teams100% Discharge Coordinator77% Other services as appropriate100% staff roles Specialist nursing 100% Specialist Medical 100% 27

P ERCENTAGE OF SERVICES PROVIDING EACH HPCNZ C APABILITY COMPONENT HPCNZ Capability Functions and Roles % of all HPCS Will have access to Functions Private/quiet spaces for consultations and family meetings46% Single rooms for dying or distressed patients/family62% Interventional pain services/techniques92% Paediatric specialist palliative care support/advice92% Hospice inpatient care100% Residential care beds92% Appropriate equipment92% Roles Physiotherapy100% Occupational Therapy100% Speech-language therapy100% Dietetics100% Pharmacy and Clinical Pharmacology100% Cultural liaison100% Interpreter services100% Could offer Functions Outpatient clinics31% On-site after-hours services23% Family carer education, rehabilitation23% Public education15% Complementary therapies23% 28

P ATIENT VOLUMES (1 J ULY 2010 – 30 J UNE 2011) Hospital Palliative Care Services (n=13) 7,256 new referrals 7,049 accepted 2.8% of referrals are declined (range of 0-14%) 19,861 contacts – ave. 3 contacts per patient 29

A VERAGE LENGTH OF CARE EPISODE 30

HPCS PATIENTS M ID - RANGE ESTIMATE Age 78% > 60 years old, 31% > 80 Gender 49.4% male Ethnicity 76.5% European, 9.4% Maori, 6.1% Pacific Diagnosis 59.8% cancer (range 32% - 100%) Reason for episode of care end 27% death, 46% discharged Place of death Insufficient data Age 84% > 60 years old, 43% > 80 Gender 50% male Ethnicity 83.9% European, 9.8% Maori, 3.6% Pacific Diagnosis 42.1% cancer 31

H OSPICE WORKFORCE Medical = 54.2 FTE 32

H OSPICE WORKFORCE Nursing = FTE 33

H OSPICE WORKFORCE Psychological/Social/Spiritual care = 87.6 FTE 34

H OSPICE WORKFORCE Allied Health = 16.9 FTE Occupational Therapists (6.1 FTE) Physiotherapists (2 FTE) Pharmacists (2.3 FTE), 35

HPCS WORKFORCE Medical = 26.3 FTE 36

HPCS WORKFORCE Nursing = 34.8 FTE 37

HPCS WORKFORCE Psychological / Social = 1.9 FTE Allied Health = 1.0 FTE 38

C ONSULTATION 16 August to 12 October 5 Consultation meetings 33 consultation submissions: Individuals – 8 Organisations – 7 Services– 18 39

N EXT STEPS … Complete analysis of consultation submissions Development recommendations Final report to Palliative Care Council (mid Nov) Report and advice to Minister of Health (end Nov) Report released publicly 40

41