Ballarat Hospice Care Inc. & Ballarat Health Service- Dialysis Shared Care Model Integrating Renal & Palliative Care Nurse-Led Intervention SMRPCC Clinical Forum, 20 th May 2016 Vicky Smith, RN MANP Palliative Care Nurse Ballarat Hospice Care Inc. Home Home Based Based Palliative Care Care
Overview Background ESKD patient Challenges for renal clinicians Ballarat Hospice Care Inc. & Ballarat Health Service - Dialysis Shared Care Model Outcomes /Highlights/Barriers 2009-2016 Case Study Evaluation
BHCI & BHS-DU Shared Care Model- Integrating Renal & Palliative Care Feedback in 2009 Family and renal and palliative care staff identified gaps in delivery of EOL care/planning for a patient ceasing dialysis Family unprepared to care for patient at home (isolated farm) Renal nurses felt inadequate and distressed like family Unsure of referral process/criteria to palliative care Late referral terminal phase Lack of equipment/nursing supports Crisis EOL planning for home death Uncontrolled respiratory distress (fluid overload) and delirium
ESKD patient kidney replacement therapy (KRT) offered to growing population influenced by: changing demographics aging population, increases in chronic disease/ comorbidities, diabetes is primary cause of CKD improvements in technology high level of symptom burden including cognitive impairment often unrecognised and untreated impacting on QOL/EOL decision making (Murtagh, 2009)
ESKD patient 1 in 5 patients over 65 on dialysis will not be alive at the end of the year (Pruthi, et. al., 2013) requires change of focus of care to offer quality of care rather than traditional focus of survivorship requires facilitation of renal supportive care at all stages of renal trajectory
Challenges for renal clinicians managing complex physical and psychological symptom burdens, facilitating ACP and delivering quality EOL care for this growing population of older and sicker people with ESKD unique patient/ clinician relationship feel ill equipped to have conversations about death and dying burden versus benefit, stopping dialysis is considered suicide patients are ready to stop but the family are not ready to let go cognitive impairment impacts on decision making
Challenges for renal clinicians regional and rural settings providing centre based dialysis for people with ESKD has increased over the last 20 years often have limited access to specialist multidisciplinary expertise (May, 2013) 22 satellite hubs in regional Victoria In Grampians region satellite hubs have no on-site renal medical / technical or limited allied support. GP down the road No MET team
BHCI & BHS-DU Shared Care Model- Integrating Renal & Palliative Care nurse led intervention common goal provide a shared care model to improve collaboration and communication with renal and palliative care aim to improve outcomes for patients and carers with ESKD at EOL
BARRIERS capacity within palliative care service concerns about demand on resources referral data shows BHCI have managed increase in referrals with existing resources Initial inflow of referrals plateaued over time as back log of cause for concern patients decreased
REFERRAL DATA Before the project very few referrals from DU to Palliative care In the first 18 months of the project 4.6% of total referrals(n=325) to palliative care from DU(n=15) proportion of renal patients referred to PC(n=15) was 21% of 70 patients. referral rate in line with national renal mortality rates(21%) Current referrals May 2016 2 dialysis 2 opting for no RRT Total referrals 2009-2016 45
MAIN OUTCOMES ACHIEVED collaborative partnerships referral process * keep simple * support nurse initiated * no need to cease dialysing Tools- POS-S(Renal), Karnofsky, Surprise question Education local/regional/pepa /ACP Regular meetings- MDT, family, blood, clinical leaders Resource Info Packs for patients/families Resource Manual for regional P/C providers All current patients have had ACP discussions
HIGHLIGHTS appointment of consumer representative to project steering committee daughter of original family that expressed concerns observing the renal clinicians evolve and have confidence to engage in sensitive and meaningful conversations and follow referral process taken the elephant out of the room medical team collaboration shared care
HIGHLIGHTS true collaboration - lived the results, story to tell renal and palliative care have shared dissemination of shared care model nationally/regionally: * RSA national conference poster presentation Best Poster * shared a regional education day rural satellite hubs with local palliative care services * non-malignant forum in Ballarat both disciplines committed to ongoing collaboration
HIGHLIGHTS changed a brave nurse s practice I had never asked a patient if they would like to die at home Permission granted to use quote from clinical leader in Dialysis post PEPA placement in Community Palliative Care
Case Study deteriorating despite dialysis 84 year old lady, lives with husband who has early stage dementia Diagnosis: ESKD secondary to multiple myeloma with multiple co morbidities (IHD, diabetes) Deteriorating despite dialysis over 12 months Fluid load /Venous assess High symptom burden you want me to die Poor functional status death team Depressed and demoralised Reluctant for palliative care referral
Case Study deteriorating despite dialysis Shared Care Model enabled Patient and family agreed to palliative care services for symptom management with continuing dialysis Enabled palliative care and renal physician to work concurrently Pain controlled: Fentanyl transdermal patch and Actiq lozenges Nausea and vomiting controlled with Haloperidol Moods/Depression: Mertazapine and Methylphenidate
Case Study Outcomes Trusting relationships developed to enable discussions around dying process and planning Slow transition towards ending dialysis as functional status declined over 4 months Family attended community palliative care service - Carer s Education Program Short stay admission to inpatient palliative care unit for symptom management and carer respite Liaised regularly with renal staff Increased services in the home enabled the patient to die comfortably & clear of mind at home surrounded by family with CSCI insitu Bereavement f/u support offered to husband and family Attended the Annual Celebration of Remembrance Service
Formal evaluation undertaken potential for renal nurses to play a role in facilitating & coordinating shift from curative/restorative phase to a palliative/terminal phase this initiative highlighted the unrecognised unmeasured burden on the renal nurse Evaluating nurses action outcomes & exploring their perspectives of implementing the Patient Outcome Scale-Symptom (Renal) assessment tool
Conclusion Thanks to the dialysis team at BHS for opening the door and keeping it open Recognising need to build relationships between two different environments palliative care dialysis unit - dynamic process - small stand alone service with autonomy - large regional hospital service - highly procedural environment Requires Executive/Medical support & clinical leaders Ongoing collaboration takes commitment, energy and a shared vision both disciplines have lived the results"
Smith V, Potts C, Wellard S, Penney W. (2015) Integrating renal and palliative care project: a nurse-led initiative. Renal Society of Australasia Journal, 11: 35 40. Specialist Home Based Palliative Care