Practicalities of Palliative Care Dr Sarah Holmes Consultant in Palliative Medicine

Identifying Patients

Three triggers for Supportive/ Palliative Care 1. The surprise question: ‘Would you be surprised if this patient were to die in the next 6-12 months?’ 2. Choice: The patient with advanced disease makes a choice for comfort care only eg refusing renal transplant 3. Clinical indicators: Specific to each of the three main end of life groups - cancer, organ failure, elderly frail/dementia

Boyd K, Murray SA. Recognising and managing key transitions in end of life care. BMJ 2010; 341:649-651

Transition 1: Would my patient benefit from supportive and palliative care? Transition 2: Is my patient reaching the last days of life?

Supportive and Palliative Care Indicators tool Ask Does this patient have an advanced long term condition, a new diagnosis of a progressive life limiting illness, or both? Would you be surprised if this patient died in the next 6-12 months?

Supportive and Palliative Care Indicators Tool (2) Look for one or more general clinical indicators Performance status poor or deteriorating Progressive weight loss (>10%) over past 6 months 2 or more unplanned admissions in last 6 months Patient is in a nursing /care home, or needs more care at home

Supportive and Palliative Care Indicators Tool (3) Now look for two or more disease related clinical indicators

Heart disease NYHA Class IV, severe valve disease or extensive CAD Breathless/chest pain at rest or on minimal exertion Persistent symptoms despite optimum tolerated therapy Renal impairment (eGFR,30ml/min) Systolic BP<100 or pulse>100 Cardiac cachexia 2 or more acute episodes needing iv treatment in past 6 months

Renal disease Stage 5 CKD (eGFR<15ml/min) Conservative renal management due to multi-morbidity Deteriorating on RRT Not starting dialysis following failure of a renal transplant New life limiting condition or renal failure as a complication of another condition or treatment

Respiratory disease Severe airways obstruction (FEV<30%) or restrictive deficit (VC<60%, transfer factor<40%) LTOT Breathless at rest or on minimal exertion between exacerbations Persistent severe symptoms despite optimal therapy Symptomatic heart failure BMI<21 More emergency admissions for infective exacerbations and/or respiratory failure

Liver disease Advanced cirrhosis with one or more complications Serum albumin < 25 and prothrombin time raised or INR prolonged Hepatocellular carcinoma

Cancer Performance status deteriorating due to metastatic cancer and/or comorbidities Persistent symptoms despite optimal palliative oncology treatment Too frail for oncology treatment

Neurological disease Progressive deterioration in physical and/or cognitive function despite optimal therapy Symptoms that are complex an difficult to control Speech problems; increasing difficulty communicating; progressive dysphagia Recurrent aspiration pneumonia; breathless or respiratory failure

Dementia Unable to dress, walk or eat without assistance Unable to communicate meaningfully Increasing eating problems; receiving pureed/soft diet or supplements or tube feeding Recurrent febrile episodes or infections; aspiration pneumonia Urinary or faecal incontinence

Clinical indicators for terminal care Q1. Could this patient be in the last days of life? Confined to bed/chair or unable to self care Difficulty taking oral fluids or not tolerating artificial feeding/hydration No longer able to take oral medication Increasingly drowsy

Clinical indicators for terminal care Q2. Was this patient’s condition expected to deteriorate in this way? Q3. Is further life-prolonging treatment inappropriate? Q4. Have potentially reversible causes of deterioration been excluded?

Coordinating Care

Gold Standards Framework Framework to improve coordination and delivery of palliative care in the community Recommended: NICE Guidance 2004 End of Life Care Strategy 2008

Goals of GSF Patients are enabled to have a ‘good death’ 1) Symptoms controlled 2) Preferred place of care 3) Fewer crises 4) Carers feel supported, involved, satisfied 5) Staff confidence, teamwork and communication improve Discuss subjectivity of “good death”

The 7 “c”s

Gold Standards Framework C1 Communication: Register – not just a list – “surprise question”, PHCT discussion, traffic light system, Advanced Care Planning C2 Co-ordination: Identified GSF coordinator eg DN, named GP, patients know they are “Gold”, PHCT discussion C3 Control of symptoms: Education, assessment tools, anticipating problems, links with Specialists Community based framework to improve quality in palliative care. Included in NHS EoL strategy as recommended practice. Difficulties in est. prognosis – and more so in non-malignant illness. “Surprise” question. If this leads to large registers can adopt traffic light system to prioritise patients eg stable, changing and regular contact Buddy system to enable part-time GPs to participate

C7 Care in the dying phase: C4 Continuity: OOH Handover Form, resuscitation status C5 Continued learning: Opportunities PHCT, Critical Events Review, preferred vs actual place of death C6 Carer support: National Carer’s Strategy, Risk assessment for bereavement support, Advanced Care Planning C7 Care in the dying phase: LCP, Gold Boxes, Priority Patient status

Advance Care Planning

Joint District DNAR policy

Current Problems with CPR Both professionals and the public understanding of CPR and its success rate remains misunderstood Some patients are having CPR attempted inappropriately and as a result death can be undignified and traumatic Dying patients are being transferred back to hospital when their preferred place of death is home Patients wishes and preferences are not always clarified and respected (advance decisions to refuse treatment) Good communication and consistent documentation is poor All care settings including ambulance service have their own documentation to record DNACPR

Yorkshire & Humber SHA Yorkshire and Humber SHA are working together with a team of clinicians and providers to agree a regionally co-ordinated approach to improve patient experience, dignity and quality of care in patients for whom CPR is inappropriate or to uphold an advance decision To be rolled out across Yorkshire & Humber in a phased approach over next 6-12 months. B & A launch September 20th 2010

Policy objectives Avoid inappropriate CPR attempts and allow natural death Encourage and facilitate good communication with patients and relevant others Clarify that patients and relevant others will not be asked to decide about CPR when clinicians are as sure as they can be that CPR would not be successful and therefore is not a treatment option Ensure that a DNACPR decision is communicated to all relevant healthcare professionals so that the transfer of patients between services does not compromise dignity, quality of care or patient choice

Documentation ONE single form to record DNACPR decisions which can be transferred across all care settings (home, hospital, hospice, care home including ambulance) If being transferred from hospital to another care setting: original form will follow patient copy of the form MUST be taken and filed in medical notes (for audit purposes) Patients may be admitted to hospital with a completed form Decision will be recorded by GP on the new End of Life Register within SystmOne (electronic patient record) as well completed form remaining with patient

How to have the conversation..??

Referral criteria The patient has active, progressive and usually advanced disease for which the prognosis is limited (although it can be several years) and the focus of care is quality of life

Referral criteria AND The patient has one or more of the following needs which are unmet: Uncontrolled or complicated symptoms Specialised nursing/therapy requirements Complex psychological/emotional issues Complex social/family issues Difficult decision making about future care

Role of the Macmillan Nurse See criteria for referral to Specialist Palliative Care services – needs which cannot be met by existing care providers Symptom control Psychosocial concerns Spiritual concerns Patient assessed either at home or as an outpatient if preferred (2 working days urgent, 5 non-urgent). Interventions may include: Advice on symptom management, may prescribe Psychosocial support/ counselling Referral to other services (lymphoedema, benefits advice, psychology, Fast Track, Hospice at Home, Marie Curie hospice or day therapy) Contact may be brief or ongoing depending on complexity

Hospice services Outpatients Day therapy COPD group Heart failure group Art group Inpatients Complementary therapy Bereavement

Useful Resources www.goldstandardsframework.nhs.uk Treatment and care towards the end of life: good practice in decision-making, GMC 2010 www.goldstandardsframework.nhs.uk www.endoflifecareforadults.nhs.uk