WHAT IS PALLIATIVE CARE? POST REGISTRATION STUDIES UNIVERSITY CAMPUS SUFFOLK

1. WHAT IS PALLIATIVE CARE?POST REGISTRATION STUDIESUNIVERSITY CAMPUS SUFFOLK

2. OUTCOMES TO IDENTIFY THE MAIN CONCEPTS THAT UNDERLINE PALLIATIVE CARE. TO EXPLORE THE BREADTH OF ACTIVITY THAT ENCOMPASSES PALLIATIVE CARE. TO LINK THE CONCEPTS WITH THE REALITY OF CARE.

3. The Principles of Palliative care ‘How people dieremains in the memoryof those who live on’Dame Cicely SaundersFounder of the Modern Hospice Movement When death is managed badly it leaves a scar that runs deep. How are these comments true as born out in your life and practice?

4. WORLD HEALTH ORGANISATION (2002) Palliative care aims to improve the quality of life of patients and families who face life-threatening illness: by providing pain and symptom relief, spiritual and psychosocial support to patients’, from diagnosis to the end of life and bereavement. What is quality of life? Make a list and then justify what you included.

5. SOME MORE FROM THE WHO Palliative Care: Affirms life and regards dying as a normal process Provides relief from pain and other distressing symptoms Integrates the psychological and spiritual aspects of patient care Offers a support system to help the family cope during the patient’s illness and in their own bereavement Which aspect is more important to you and why? Which of these provides the foundation for care?

6. WATCH THIS VIDEO LIFE Before Death What is Palliative Care? – YouTube What did you think? What do you remember most?

7. THE CONTEXT IN WHICH WE OPERATE • About 500,000 people die each year in Britain. • By 2030: about 590,000 people will die each year. • Of these the over 65’s will account for 86 per cent of deaths. • Only one in ten people will die at home. • 66% of people said they would prefer to die at home. (YouGov Poll) What do you think about dying at home? Is this practicable for all or most?

8. More context • 1 % want to die in a care home. • By 2030 more than 20 % of deaths will be in care homes. • 7 % wanted to die in hospital. • However about 58% of deaths take place in hospital, this will rise to 65 % by 2030. End of life care in the acute hospital is very variable. What do you feel about this?

9. THE NATIONAL CANCER PLAN(2000) • The NICE clinical guidance on supportive and palliative care advises those who develop and deliver cancer services for adults with cancer know about what is needed to make sure that patients, and their families and carers, are well informed, cared for and supported. • (NICE 2004) Palliative & End of Life Care is now subject to DoH guidance and policy.

10. DoH END OF LIFE STRATEGY(2008) 1) Discussions as the end of life approaches; 2) Assessment, care planning and review; 3) Coordination of care for individual patients; 4) Delivery of high quality services in different settings; 5) Care in the last days of life; and 6) Care after death. The strategy document does not overtly define Palliative Care, but this 6 step pathway shows the way.

11. The NHS End of Life Care Programme(2008) was introduced to facilitate the rolling out of the EoLC strategy, this was taken a stage further with healthcare providers expected to provide evidence of patient choice in end of life care (DH, 2008) Choice was related to where people wanted to die (Home , Hospital etc.)

12. DYING MATTERS • In response to the EoLC Strategy (2008a) the NCPC set up the Dying Matters Coalition (2009), promoting public awareness of dying, death and bereavement as a natural part of the life cycle. The Coalition states: • “Talking about dying makes it more likely that you, or your loved one, will die as you might have wished and it will make it easier for your loved ones if they know you have had a good death.” Dying Matters Why is it so difficult to talk about the end of life?

13. Lord Darzi’s Next Stage Review (DH, 2008b) builds on the EoLC Strategy indicating patients should have more choice and involvement in their end of life care and be offered an advance care plan. This means early discussion regarding end of life. What is an Advance Care Plan?

14. Core competencies in Palliative Care • Communication. • Assessment and Care Planning. • Symptom management, comfort and well being. • Advance Care Planning. These are important issues within Palliative Care.

15. TIME TO TAKE A DEEP BREATH AND BRING THIS ALL TOGETHER • WHAT HAVE WE GOT? • Supporting patients and families through the whole life threatening illness trajectory and end of life. • Attending to signs and symptoms. • Assessment and planning. • Communication. • Providing information. • Giving choice to patients. • HOLISTIC approach to care.

16. WHO DELIVERS THIS SERVICE? • Primary care services • District nursing services • Personal social care services Psychological support services • Acute medical services • Specialist palliative care services • Out of hours services Ambulance/transport services Information services • Respite care

17. Speech and language therapy • Equipment • Occupational therapy • Physiotherapy • Day care • Pharmacy • Financial advice • Dietetics • Carer support services • Spiritual care

18. Community and voluntary sector support, including volunteers • Interpreter services • Not all these people and groups may be necessary, but this is a team effort as the needs are complex and can change quickly. This requires a great deal of co-ordination and integration.

19. SO WHAT HAVE WE DONE? • The concepts of care are related to the competencies and support. • The breadth of Palliative care is total care in mind, body and spirit. • The link to the reality is patient experience of choice, communication, support and care. • Palliative care is both challenging and rewarding. Research suggests we get it right most of the time. But……

20. End of Life Care- Getting it right They’ll never forgive you if you don’t. They’ll never forget you if you do.