Delivering personalised care to end of life patients Jane Naismith Nurse Consultant in Palliative care St Joseph s Hospice London
Over View This session will cover Supporting patients with long term conditions in the community. Holistic assessment Communication about prognosis and treatment preferences.
Scope Death rate in 2010 was 450,000 Predicted rate in 2030 is 586,000 500,000 deaths in England per year 2/3 patients over 75 years of age Often follow a period of chronic disease >50 % of people wish to die at home 53% of people died in hospital in 2010 People think that dying in the preferred place of death is an important priority
Scope About 15 million people in England have a long-term condition The number of people with three or more long-term conditions is predicted to rise from 1.9 million in 2008 to 2.9 million in 2018 Long-term conditions are more prevalent in Older people (58% of people > 60 compared to 14% under 40) More deprived groups (people in the poorest social class have a 60% higher prevalence than those in the richest social class and 30% more severity of disease) (Bennet et al 2012)
Scope Patients average 3.5 admissions each in last 2 months before death More than 50% have between 2 and 5 admissions in their last year of life More than 200,000 emergency admissions end in death each year Each unplanned admission typically costs > 3,000 Hospital remains the least preferred place of death
Complexity Multiple teams involved in care often no single team to coordinate Lack of focus on overall goals of care Suboptimal symptom control Risks of polypharmacy / medication and investigation burden Challenges of uncertainty and potential for reversibility Confusing messages for patients and family.
End of Life Strategy Identifying people approaching the end of life Care planning Co-ordination of care Rapid access to care Delivery of high quality services in all locations Last days of life and care after death Involving and supporting carers
The End of Life Care Pathway The End of Life Care Pathway Step 1 Step 2 Step 3 Step 4 Step 5 Step 6 Discussions as end of life approaches Assessment, care planning and review Coordination of care Delivery of high quality services Care in the last days of life Care after death Open, honest communication Identifying triggers for discussion Agreed care plan and regular review of needs and preferences Assessing needs of carers Strategic coordination Coordination of individual patient care Rapid response services High quality care provision in all settings Hospitals, community, care homes, hospices, community hospitals, prisons, secure hospitals and hostels Ambulance services Identification of the dying phase Review of needs and preferences for place of death Support for both patient and carer Recognition of wishes regarding resuscitation and organ donation Recognition that end of life care does not stop at the point of death. Timely verification and certification of death or referral to coroner Care and support of carer and family, including emotional and practical bereavement support Support for carers and families Information for patients and carers Spiritual care services
Uncertainty Uncertainty at the end of life Significant proportion of hospital inpatients in last year of life Determining final event(s) challenging Acute potentially reversible conditions: sepsis, AKI, Important to identify patterns of deterioration Increasing frailty (lack of physiological reserve) Repeated admissions Recurrent acute episodes with progressive deterioration
Diagnosing EOL Its difficult Surprise question Would you be surprised if the person in front of you were to die in the next 6-12 months? If yes Who is the best person to start exploring this with the patient?
Prognostication Clinical indicators General predictors Multiple co-morbidities Weight loss >10% over 6 months Serum Albumin < 25g/l Reducing performance status / Karnofski score <50% (requires considerable assistance) Dependence in most ADLs
Outcomes In cancer patients, patients with more severe levels of comorbidity have worse survival Disease is metastatic or not responding/amenable to treatment Performance status and functional ability > 50% of time in bed/lying down prognosis likely to be < 3months Heart Failure Patients with heart failure often have more palliative care needs than those with cancer failure NYHA stage III and IV SOB at rest/minimal exertion Repeated hospital admissions Difficult symptoms despite treatment
Outcomes COPD Severe disease (FEV < 30%) Recurrent hospital admissions Criteria for LTOT applies Associated right heart failure Associated anorexia, resistant infection, depression Neurological Disease Swallowing difficulties More help with ADLs Respiratory difficulties, MND and MS Medical complications CKD stage 5 (egfr < 15 ml/min) Symptoms: anorexia, nausea, pruritis, fluid overload Stage 5 disease not seeking or discontinuing dialysis
Frailty Frailty syndrome - arises from the physiological triad of sarcopenia and immune and neuroendocrine dysregulation Patients are considered frail if they have three or more of: Reduced activity Slowing of mobility Weight loss Diminished handgrip strength Exhaustion Frail older adults are more susceptible to delirium, functional decline, impaired mobility, falls, social withdrawal, and death Frailty is associated with poor health outcomes - from disability to institutionalisation and death
Your Role in the Community Recognition Communication Assessment You are often already visiting patients with LTC- are they changing over time? What is their treatment goals and ceilings of treatment? What is their preferred place of care? What is their preferred place of death? Family preferences/ information needs? Communicating preferences within the wider healthcare team Holistic standardised using validated tool (IPOS) Carer assessment Repeated over time
Your Role in the Community Planning/ Coordination Care Navigation Just in case medication GP MDT Liaison with other Specialist Nurses Information- For Patients and their family/friends Medication Care packages Benefits Care at the End of Life
Holistic Assessment Patient goals problems or concerns What concerns you today? What are your goals? What is your Priority? Validated tools that illicit physical, social psychological and Spiritual IPOS PEPSI COLA Distress thermometer Hospital anxiety and depression tool Alongside Phase of illness and performance score
Advance Care Planning Aim to illicit preference for EOL care It s a Voluntary process, not all patients will want to or be ready to engage Preference can change overtime so part of an ongoing conversation Consent required before information is shared Once known share widely
Advance Care Planning Often about more than place of care and should include treatment preferences Ceilings of treatment Preferred place of death DNACPR New Respect Document Requires the patient to have capacity
Advance Care Planning Requires sensitive communication Remember patients are used to being asked difficult questions but HCP Look for Cues or use a change in health as a prompt People often find it easier to say what they don t want Explain the benefits of advance planning People may have more than one preference Need to gain consent to share In London individuals can now create their own coordinate my care record
Reference Barnett K, Mercer SW, Norbury M, Watt G, Wyke S and Guthrie B (2012). Epidemiology of multimorbidity and implications for health care, research and medical education: a cross-sectional study.the Lancet online Bausewein C,et al (2009) Outcome measurement in palliative care the essentials. London: PRISMA,2009 Clark D et al (2014) Imminence of death among hospital inpatients: Prevalent cohort study. Palliative Medicine 2014, Vol. 28(6) 474 479 Coordinate my care http://coordinatemycare.co.uk/ https://www.kcl.ac.uk/lsm/research/divisions/cicelysaunders/attachments/keyreport-guidance-on- Outcome-Measurement-in-Palliative-Care.pdf Goldstandards framework prognostic indicator guidance https://www.goldstandardsframework.org.uk/cdcontent/uploads/files/library%2c%20tools%20%26%20resources/pepsicolahpaguidancedocume nt.pdf Highet G et al (2013)Development and evaluation of the Supportive and Palliative Care Indicators Tool (SPICT): a mixed-methods study BMJ Supportive & Palliative care 2014;4:285-290. IPOS https://pos-pal.org/ Murtagh F (2015) Introducing the Outcome Assessment and Complexity Collaborative Suite of Measures. https://www.kcl.ac.uk/lsm/research/divisions/cicelysaunders/attachments/oacc- Booklet-2015---The-OACC-Suite-of-Measures---.pdf SPICT Tool - http://www.spict.org.uk/the-spict/