Making Health Care Decisions End of Life Care Dr Tony Jones Board Member

Commissioning – a process of providing optimal services AND reducing unnecessary waste

Place of Death

The UK Leads the World in Quality of Death

Some Stats around Death, Dying and Hospitals When surveyed approximately 65% of people would prefer to die in their own home 1 In West Kent 53% die in Hospital 2 (National Average – 57%) At any one time about 25% of inpatients in acute hospitals are in their last year of life On average people are admitted to hospital three times and spend nearly a month of the last year of their life in hospital (1) National Audit Office 2008. (2) EoLCIN 2007-2009

End of Life Process Nursing home Own home Residential home Hospital Death 3 x

End Of Life Care for all Diseases NEUROLOGICAL CONDITIONS COMPLEX FRAIL ELDERLY EOLC CANCER DEMENTIA LONG TERM CONDITIONS

Illustration of Changing Functional Level over Last Year or so of Life Illustration of Changing Functional Level over Last Year or so of Life. Slide courtesy of Whole Systems Partnership

The Down Side of Admission Risk – 25% of patients are likely to sustain harm (New England Journal Med 2010) The nature of a hospital environment Dementia patients rate of cognitive decline increases 2 to 3 fold irrespective of length of stay Cognitively impaired patients spend 2-3 weeks longer on average than non-impaired individuals Patient preference to remain at home Pressure from relatives and other professionals Once admitted, decisions about long term care needs are not made in the optimum environment

Why do Patients end up in Hospital? Clinician decision that the patient and/or their carers cannot manage at home Busy clinician is managing a caseload and not just an individual patient The right service response cannot be identified quickly End of life preferences have not been discussed with the patient previously so wishes cannot be considered Patient needs nursing care – which could be provided in community if identified earlier Overall, a failure to identify the dying patient and to establish patient preferences

Where in the process might change occur? Patient at home General practice Out of hours Home Ambulance service A&E In-patient NHS Direct We tend to think of the typical scenario as patient calls practice who may or may not visit but onward referral results. This of course is only one sequence of events that can lead to A&E attendance & possible admission. Each of the lines on this rather complex looking diagram is a point for potential action. Analysis of each of these pathways may yield ideas for potential change where alternative pathways of care can be envisaged Community care Supervised care homes Where in the process might change occur? Public places

Possible Interventions 1. Risk Predictive Software

Identifying Patient Decline For any individual the risk of admission is dynamic. The rate of change in risk will vary from one individual to another. Top 1% Top 5% Top 30%

The white arrows represent what is happening to the admission risk for individuals over a given time. While for the majority the risk alters little over any given time period, for some the risks are escalating rapidly Top 1%. Top 5% Top 40% The risk is static for this individual

Possible Solutions 2. The Transition to End of Life Care

So what should the Model of Care look like? Dementia Physical OA CKD Psychologica l COPD Social LVF Spiritual Disease management Symptom Management

Possible Solutions 3. Advanced Care Planning

Possible Solutions 4. DNAR Status

First, do no Harm Hippocratic Oath Prolong life or alleviate suffering?

What still needs to be done? Better understanding of end of life care Much greater use of Care Planning Investment in community services including hospices Systematic education of all professionals More open discussion and engagement with patients and public about end of life care

What still needs to be done? Table discussion: What needs to happen/change to improve the person’s experience at the end of life?