1. Advance Care Planning Dr. Denis Colligan Cancer lead and Macmillan GP, NMCCG Dr. Iain Lawrie Palliative Care consultant PAHT

2. Outline Why have we arrived where we are? The advance decision in context What do all the terms mean? When are advance decisions difficult or impossible? Outcomes of an advance care plan decision How can I incorporate this into routine practice?

3. Learning outcomes To understand the meanings of the various terms used To appreciate the importance of advance care planning To start to think about how you can integrate ACP into your daily practice To understand the common pitfalls of ACP

4. Why have we arrived where we are? Improving quality Increasing numbers Focus on end of life care Person-centred general care planning Patient choice Patient preference Mental capacity

5. The end of life

6. Evolution of care

7. What do all the terms mean?

8. The advance decision in context

9. What is advance care planning? Process of discussion between an individual and their care providers Makes clear a person's wishes Anticipated deterioration o in physical condition o loss of capacity to make decisions o loss of capacity to communicate decisions Voluntary

10. What is a statement of wishes and preferences? Summary term o written and / or recorded oral expressions o preferences in relation to future treatment and care o explanations of feelings, beliefs and values o non-medical and medical matters o not legally binding

11. What is an advance decision? Refusal of a specific medical treatment Comes into effect with loss of capacity Validity needs to be determined at the time it comes into effect, before it is used Legally binding

12. Advance Decisions to Refuse Treatment (ADRT) May or may not be right for a person Needs to be guided by someone who knows what they are doing Aged over 18 Mental capacity Specific refusal Specific circumstances Written or verbal Only if capacity lost Only in the specific stated circumstances Legally binding Life-sustaining treatment – written / “even if life at risk”

13. Lasting Power of Attorney Statuary form of power of attorney Created by the Mental Capacity Act (2005) Anyone with capacity can choose a person to be an attorney The attorney takes decisions on the person's behalf if they subsequently lose capacity Replaces Enduring Power of Attorney

14. Back to the advance care plan (ACP) Role in supportive care When do you start discussions? Discussions Documentation In context of the Mental Capacity Act

15. Prompts for starting an ACP discussion Patient request New diagnosis Significant change in management Following multiple admissions or crises Change in care setting Deterioration in health

16. ACP discussions should be... Documented Regularly reviewed Communicated to key persons involved in their care Discussed with family and friends, if the person wishes

17. ACP discussions may include... The individual's concerns Their important values or personal goals for care Their understanding about their illness and prognosis Preferences for types of care or treatment

18. Documentation No set format Documentation is helpful! Avoid rigid interviews and templates Open dialogue Patient should check what is recorded Confidential – patient should be aware Clear record of individuals shared with Keep updated as changes occur ADRT follows a more ‘formal’ process

19. When are advance decisions difficult or impossible? Hesitate if- o the patient is reluctant or refusing to discuss the future o the patient is adjusting to a new care environment and carers o the presence of troublesome physical symptoms o the presence of troublesome anxiety, low mood or anger

20. “Best interests” Non-judgemental All relevant circumstances without discrimination No desire to bring about death Consult those close re previous opinions / thoughts Consult with the clinical team Consider beliefs and values Consider other factors the individual would consider Consider the individual’s feelings

21. Outcomes of an ACP discussion Advance statement o verbal or written o not legally binding Advance decision to refuse treatment o verbal or written unless refusing life-sustaining treatment Last Power of Attorney o legal authority to make decision for nominated person

22. Key principles Voluntary Patient-centred Evolving Autonomy May be shared Confidential Place of care Capacity ADRT Staff should be aware Appropriate Sensitive Training Know limits Realistic Knowledge

23. True of false? ½ million deaths in England and Wales TRUE About 1% die per year Work out from your list size Look at number on GSF register

24. Biggest cause of Death? Cancer? FALSE 2000 PTS 20 deaths 5 cancer 6 organ failure 7/8 dementia/frailty

25. Testing capacity Everyone’s job Depends on circumstance More senior for bigger decisions

26. Talking about EOL Studies have shown that 60% + want to discuss Much less get the opportunity Doctors fear upsetting patients But on the whole is not a problem Beware pitfalls

27. Place of Death 60% in hospital 30% home (including nursing home) 5% in hospice Preference is for home in 70%

28. Last Days of life Care Liverpool care pathway should not be used One Chance to get it Right Communication Avoidance of “check-lists”

29. Complaints in EOL 54% of total in hospital care Predominantly about communication Not symptom control

30. Advance Directives Legally binding Can refuse specific treatments Can’t compel specific treatments