Five Priorities for care of the dying person Bill Noble Medical Director Marie Curie Cancer Care

Lessons from the Liverpool care pathway The Neuberger Report: More care, less pathway The Leadership Alliance

Lessons from the Liverpool care pathway No dissemination without evaluation Industrialisation of palliative care does not work Documents do not an innovation make Doctors and nurses need family management skills

Five Priorities for care of the dying person 1. The possibility that a person may die within the coming days and hours is recognised and communicated clearly, decisions about care are made in accordance with the person's needs and wishes, and these are reviewed and revised regularly. 2. Sensitive communication takes place between staff and the person who is dying and those important to them. 3. The dying person, and those identified as important to them, are involved in decisions about treatment and care. 4. The people important to the dying person are listened to and their needs are respected. 5. Care is tailored to the individual and delivered with compassion - with an individual care plan in place.

The palliative care consultation The Gold Standards Framework gave us organisational priorities for palliative Care: Identify Assess Plan

A 2007 National Survey of UK General Practices 2007 Care: A National Survey of UK General Practices Improving Supportive and Palliative Care For Adults with Cancer in Primary Care: A National Survey of UK General Practices Aims To establish the extent to which UK Primary Care has adopted recommended practices in relation to supportive and palliative care of adults with cancer. To relate participation in previous initiatives, such as managed frameworks of care, to the adoption of recommended practices. Methods A random sample of 3495 GP Practices throughout the UK were sent a postal questionnaire to complete in Spring 2007. The senior partner was targeted, with reminders; then further reminders were sent to Practice Managers. Response rate 2096 completed questionnaires were returned, a response rate of 60.0%

Comparison of the Four Nations Improving Supportive and Palliative Care For Adults with Cancer in Primary Care: A National Survey of UK General Practices Comparison of the Four Nations GSF LCP ACP PPC GP-EoLC-I England 62.4% 27.9% 9.6% 14.4% 30.95 Scotland 80.9% 11.9% 2.1% 4.3% 32.1 Northern Ireland 27.5% 8.2% 1.4% 1.4% 29.71 Wales 16% 9.6% 8.5% 3.2% 28.54 UK mean 61.1% 24.6% 8.4% 12.3% 30.95

The palliative care consultation The Gold Standards Framework gave us organisational priorities for palliative Care: The General Practice End of Life Care Index (GP-EoLC-I)

The General Practice End of Life Care Index (GP-EoLC-I) 701 practices reported percentages of cancer patient deaths at home or in preferred place of care An increased score on the GP-EoLC-PC (Personal Care) subscale associated with an increased likelihood of reporting cancer patient deaths at home of more than 60%, and deaths in preferred place of care of 90% and above. 232 of reporting practices had taken their figures from practice records. Practices using Advance Care Planning were 2.454 times more likely to have a home cancer death rate greater than 60% compared to practices which did not. Practices using Preferred Place of Care were 2.173 times more likely to have a home cancer death rate greater than 60% compared to practices which did not.

The General Practice End of Life Care Index (GP-EoLC-I) Our findings appear to support the role of national initiatives in improving the quality of end of life care delivery in general practice. The analysis suggests a relationship between personal care, opinion of quality, practice and organisation. One possible interpretation is that adoption of the Gold Standards Framework may help produce improved organisation of palliative care, leading to better personal care, and improved practice opinions of the quality of care. However a longitudinal study or randomised trial would be necessary in order to test for any such causal relationship.

Read Code Lottery Numbers of patients meeting each of the GSF prognostic indicators for palliative care need. *Other life limiting illness included cystic fibrosis, Huntingtons disease, asbestosis etc.

Diversity of survival

General practitioner’s role in terminal illness Flexibility, patient centredness and public health perspective Culture of frequent review, 24 hour clinical responsibility and rapid escalation.

UK Palliative Care Services Help tHe hospices 2013 220 hospice and palliative care inpatient units 3,175 hospice and palliative care beds 288 home care services 127 hospice at home services 272 day hospice units 343 hospital support services

Nuffield Trust report on Marie Curie Nursing Service A report from the Nuffield Trust indicates the potential savings which can be achieved by delivering community based end of life care. In 2012, the Nuffield Trust published its evaluation of the Marie Curie Nursing Service (MCNS). It compared the experiences of almost 30,000 people who had received MCNS care with matched controls who were alike in every respect that could be measured, other than they had not received MCNS care.

Nuffield Trust report on Marie Curie Nursing Service The study found that access to MCNS care had a profound impact for those at the end of life. Put simply, those who received the service were significantly more likely to die at home and were much less likely to use all forms of hospital care in the last few months of life. The result was that total hospital costs for people using the Marie Curie Nursing Service were £1,140 less per person.

Exploring the cost of care at the end of life Its conclusion is clear: “any increase in activity that might occur in primary care, community care and in social care activity as a result of reduced hospital bed days is likely to be very modest when considered against the entirety of care activity during the last months of life.” Based on these calculations it is estimated that commissioners could be able to realise potential savings of ‘nearly £500 per person’.

Lessons from a study of an innovative consultant-led community service in the UK The Midhurst Macmillan Specialist Palliative Care Service (MMSPCS) is a UK, medical consultant-led, multidisciplinary team aiming to provide round-the-clock advice and care, including specialist interventions, in the home, community hospitals and care homes. Of 389 referrals in 2010/11, about 85% were for cancer, from a population of about 155 000. The mean cost is about 3000 GBP (3461 EUR) per patient with mean cost of interventions for cancer patients in the last year of life 1900 GBP (2192 EUR). Post-referral, overall costs to the system are similar for MMSPCS and hospice- led models; however, earlier referral avoided around 20% of total costs in the last year of life. Patients and carers reported positive experiences of support, linked to the flexible way the service worked. Seventy-one per cent of patients died at home. This model may have application elsewhere.

Five Priorities for care of the dying person 1. The possibility that a person may die within the coming days and hours is recognised and communicated clearly, decisions about care are made in accordance with the person's needs and wishes, and these are reviewed and revised regularly. 2. Sensitive communication takes place between staff and the person who is dying and those important to them. 3. The dying person, and those identified as important to them, are involved in decisions about treatment and care. 4. The people important to the dying person are listened to and their needs are respected. 5. Care is tailored to the individual and delivered with compassion - with an individual care plan in place.

The palliative care consultation The Gold Standards Framework gave us organisational priorities for palliative Care: Identify Assess Plan

The palliative care consultation The Gold Standards Framework gave us organisational priorities for palliative Care: Low scores for carer support and information

Context, Issues, Story, Plan. The points of agreement or concordance, need to cover all four key areas; missing any of them has grave consequences for the clinical relationship. Without concordance, patients might conclude that: you don’t know why you are there (context) you don’t know what’s the matter (issues) you don’t know what’s going on (story) you don’t know what you’re doing (plan).

Context, Issues, Story, Plan. Four points in the encounter where doctor and patient with or without family or carers, need to be in agreement: Context: Why you are seeing the patient and or the family today, your relationship Issues: Concerns, diagnoses, symptoms, feelings, fears, problems Story: How the disease or illness relates the patients life and family. Plan: Information, investigations, treatment, care, escalation, review, availability, safety-net