Setting the Boundaries: What Palliative Care Involves Dr Bill Noble Chairman, Association for Palliative Medicine STRATEGIES FOR END OF LIFE CARE London June 2008

WHO Definition of Palliative Care Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.

WHO Definition of Palliative Care for Children Palliative care for children represents a special, albeit closely related field to adult palliative care. WHO’s definition of palliative care appropriate for children and their families. The principles apply to other paediatric chronic disorders.

WHO Definition of Palliative Care relief from pain and distressing symptoms affirms life and regards dying as a normal process intends neither to hasten or postpone death integrates psychological and spiritual care support to live as actively as possible support the family during the patients illness and in bereavement uses a team approach enhances quality of life, may positively influence the illness applicable early in illness, with other therapies and investigations Palliative Care for children is the active total care of the child and family support begins with diagnosis, and continues alongside therapy alleviates a child's physical, psychological, and social distress requires a broad multidisciplinary approach, includes the family and community resources provided in tertiary care facilities, community centres and homes

Improving Supportive and Palliative Care For Adults with Cancer in Primary Care: A National Survey of UK General Practices Philippa Hughes, Peter Bath, Nisar Ahmed, Kevin Bolster & Bill Noble Macmillan Cancer Support 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 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%

Improving Supportive and Palliative Care For Adults with Cancer in Primary Care: A National Survey of UK General Practices Participation in initiatives to improve palliative care n (%) Gold Standards Framework1281 (61.1%) Liverpool or other Care Pathway 515 (24.6%) Preferred Place of Care 257 (12.3%) Advance Care Planning 176 (8.4%) Practice Behaviours n (%) System to provide anticipatory medication1727 (82.4%) System for co-ordination of palliative care1697 (81.0%) Regular meetings on palliative care1424 (67.9%) Unified record keeping1379 (65.8%) Fully operational cancer or palliative care registers1369 (65.3%) Named co-ordinator for palliative care1333 (63.6%) Formal protocols for care of the dying 814 (38.8%) Regular use of a symptom assessment tool 372 (17.7%)

Improving Supportive and Palliative Care For Adults with Cancer in Primary Care: A National Survey of UK General Practices Using stepwise regression indicates: Participation in the Gold Standards Framework accounts for 14.2% of the variance in the Practice Organisation scale score The Practice Organisation scale accounts for 22.7% of the variance in the Personal Care scale score Self-reported quality of palliative care accounted for 24.0% of the variance in the combined scale the General Practice End of Life Care Index However, the extent of the variance accounted for in any of the three models did not exceed 36%, leaving 64% of the variance accounted for by other unidentified factors, or random variation

Improving Supportive and Palliative Care For Adults with Cancer in Primary Care: A National Survey of UK General Practices 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.

Royal College of Physicians Palliative Care Services: meeting the needs of patients Recommendations on Service Development All suffering and dying patients should have equitable access to palliative care services. There is a requirement for increased provision of palliative care services in the UK both in the community and secondary/tertiary care, to abolish the disparity in provision for patients with non-malignant diseases and cancer as well as regional inequalities. There should be increased core NHS funding so the service is not financially dependent on charitable giving. Central planning and commissioning should focus on integrated care across primary, secondary and tertiary health and social care interfaces with an emphasis on cross-agency working and on making access for patients and carers simple and reliable. Structures for coordination need to reflect this. Boards of all commissioning structures and health and social care providers should be explicitly responsible for general and specialist provision and implementation of the national strategy, with requirements for annual reporting.

Palliative Medicine The Association for Palliative Medicine of Great Britain and Ireland (APM) was founded 22 years ago and the medical specialty of palliative medicine is now 21 years old. All doctors, whether general practitioners or specialists in any setting, hold clinical responsibility for the treatment of their patients and have a role in providing medical leadership in their patients’ palliative care. The core role of the palliative medicine physician may be defined as symptom management and end-of-life care for patients with complex clinical needs. They provide medical leadership within palliative care services and hold clinical responsibility for the treatment of patients in their care. Areas of responsibility include: advising on strategic planning and commissioning, research, education and training in relation to palliative care.

Setting the boundaries Detecting distress, assessment of need, accessing services Understanding prognosis, defining risk, diagnosis of dying

Clinical assessment of need Sheffield Profile for Assessment and Referral to Care (SPARC-45)

Survival of Patients referred to Palliative Care at the Northern General Hospital June 2002 to April 2007 (75% cancer, 25% non-cancer) Time (days) Cumulative Survival Censored Survival Function Kaplan-Meier Curve n=3586

Survival functions of palliative care patients with cancer versus non- cancer

Distribution of survival time following referral to Palliative Care service n=3586, showing the first four sextiles Survival Frequency Mean =8.11 Std. Dev. =7.446 N =2,373 Survival: A

Understanding Prognosis ‘ Survival Dice’ illustrating chances of survival following referral to a palliative care service 0-2 days days More than 82 days 3-6 days 30 to 81 days 7 to 13 days 0-2 days

Summary of Palliative Care Boundaries: Palliative Care has two, often-related purposes; symptom management and end of life care for any patient with distress and complex needs any time in any care setting. Key to setting the boundaries of care is therefore by clinical assessment of needs and formulation of prognosis. Key to setting the boundaries of intervention is equity of provision throughout the health care system and between patient groups.