1. HEAD AND NECK STUDY DAY…..A MULTI- DISCIPLINARY APPROACH Advance Care Planning

2. Defining End of Life People are “approaching the end of life” when they are likely to die within the next 12 months. This includes people whose death is imminent (expected within a few hours or days) and those with: Advanced, progressive, incurable conditions General frailty and co-existing conditions that mean they are expected to die within 12 months Existing conditions if they are at risk of dying from a sudden acute crisis in their condition Life-threatening acute conditions caused by sudden catastrophic events. General Medical Council (2010)

3. Publications In 2008 the DOH published The End of Life Care Strategy – the strategy aimed to improve the end of life care for all patients irrespective of diagnosis. In 2014 the End of Life Care Strategy’s fourth annual reports’ focus was on supporting people to be cared for and to die in their place of choice, providing the community services to enable this to happen.

4. Enablers to improving end of life care The National End of Life Care Programme (2012) published a guidance pack identifying five key enablers to assist healthcare providers in delivering high quality end of life care: Advance Care Planning Electronic Palliative Care Coordination Systems (EPaCCS) The AMBER care bundle The rapid discharge home to die pathway The Liverpool Care Pathway

5. Defining Advance Care Planning Advance care planning (ACP) is a voluntary process of discussion about future care between an individual and their care providers, irrespective of discipline. If the individual wishes, their family and friends may be included. It is recommended that with the individual’s agreement this discussion is documented, regularly reviewed, and communicated to key persons involved in their care www.endoflifecareforadults.nhs.uk

6. Advance Care planning It is based on a person’s priorities, beliefs and values and involves taking time to learn about end-of-life care options and services before a health crisis occurs. When one cannot express one’s own wishes, professional care providers (e.g. treating physician, other health care professionals) and/or other people (e.g. family members, spouse) are forced to take decisions during such as a crisis that may differ from the patient’s wishes.

7. Advance Care Planning Can cover anything to do with future care including: Thoughts on different treatments or types of care Religious or spiritual beliefs that wish to be reflected in care Name of a person to be consulted in the future Appointing someone to make decisions when a patient is no longer able to make decisions for themselves Preferred place of care/death

8. When to Initiate a ACP Discussion Usually takes place in anticipation of a future deterioration with loss of capacity whereby the patient is unable to make decisions and/or communicate their wishes Life changing event Following a new diagnosis of life limiting condition Significant shift in treatment focus Multiple hospital admissions

9. Opportunities In oncology, many patients have a long disease trajectory, during which events can occur that may provide the opportunity to establish preferences. In palliative care, many of these topics become more important and end-of-life issues should be discussed with the patient, to know what the patient wants in a specific situation.

10. Who Initiates the Discussion Initiation of ACP discussion by a care provider requires careful consideration: Appropriate communication skills Full knowledge of the person’s medical condition, treatment options and social situation There may be someone more appropriate to carry out this discussion e.g. specialist nurse The time and setting should be appropriate for a private discussion May require several discussions for clarification and comprehension of relevant information.

11. Advance Care Planning The discussion of advance care planning depends on many factors, such as cultural background, religion, legal framework, educational level, personality type, age, personal life-and-death experiences and disease status.

12. Where would you most like to be cared for? DNACPR Do you have any comments or wishes that you would like to share with others? Who else would you like to be involved if it ever becomes difficult to make decisions? Organ donation Have you made a will? Is there anything you would ideally like to avoid happening to you? Lasting Power of Attorney Advance Decision to Refuse Treatment (ADRT) Preferences regarding future care?

13. Benefits of Advance Care Planning Can provide the comfort of having a greater sense of control over what may happen in the future Promotes discussion around understanding of illness and prognosis Can promote important discussions between family members Provides valuable information about patient’s priorities which can be considered in the future when acting in the patient’s best interests Identifies issues providing MDT with valuable information which may need to be considered when planning treatment Can provide opportunity to discuss appointing LPA or ADRT.

14. Challenges to Advance Care Planning Voluntary process and patient may not want to confront future issues. Who is the most appropriate person to initiate the discussion? Need to have appropriate communication skills Need knowledge of support, services and choices available in particular circumstances Need adequate knowledge of the benefits, harms and risks associated with treatments or refusal of treatments to allow patient to make informed choice People change their minds.

15. Head and Neck Patient Considerations Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) Artificial hydration and nutrition Implications of cancer treatments Risk of bleed

17. Mrs Tracey- the Verdict Doctors will need to justify DNACPR decisions Keep an account of the discussions they have with the patients and families involved If a patient has capacity there should be a presumption that they should be involved in the DNACPR decision There must be 'convincing' reasons not to involve the patient A clinician's belief that cardio-pulmonary resuscitation will fail is not enough. Neither is the fact that the patient may find the topic distressing.

19. Decisions Relating to Cardiopulmonary Resuscitation The guidelines identify the key ethical and legal issues that should inform all CPR decisions. Key points emphasized in the new guidance include: The value of making anticipatory decisions about CPR as an integral part of good clinical practice The importance of involving people (or their representatives if they are unable to make decisions for themselves) in the decision-making process That when CPR has no realistic chance of success it is important to make decisions that are in the best interest of the patient, and not to delay a decision because a person is not well enough to have it explained to them or because their family or other representatives are not available The importance of careful documentation and effective communication of decisions about CPR.

20. Implications of Cancer Treatments Altered airway Changes to sensation Speech Swallowing Oral changes- trismus, dry mouth Changes to appearance Survivorship

21. Hydration and Nutrition Support patients to consider when they may wish for an intervention When they may wish for an intervention to be discontinued

22. Bleeding Risk- Head and Neck Cancers Surgery Radiotherapy Post Operative Healing Problems Fungating Tumour Systemic Factors

23. Carotid Artery Rupture Royal United Hospital Bath 2013 Carotid Artery Rupture: Related to the Terminal Care of the Head and Neck Cancer Patient: Policy, Procedure & Guidelines

24. Use of Benzodiazipines The dose should be given as 5mgs IV stat dose or 5- 10mgs SC/ IM stat dose. (Smith, 1992; Pereira & Phan, 2004) The dose may then be titrated until the patient is fully sedated (Forbes, 1997)

25. Opioid Use During Massive Haemorrhage Morphine is not recommended as a first line medication in this event for the following reasons: Supporting literature and anecdotal accounts of witnesses to this event, there are no reports of pain. Due to the strict protocols on the storing, drawing up of, and administering of, controlled drugs, there may be unavoidable delays when administering the morphine. There are connotations with euthanasia and ethical dilemmas raised by the administering of an opioid if the patient is in no pain.

26. Use of opioid Therefore, it is not recommended in this event EXCEPT for the following reasons: Should the patient have a bleed that is not likely to result in immediate death and complain of PAIN and/or BREATHLESSNESS, then these would be the only indications to give morphine or Should the patient be on regular opioids, the dose given should be equivalent to their usual four hourly dose of opioid. In an opioid naïve patient, 2.5mg of morphine could be given subcutaneously

27. Managing the risk The goal of management of the event must be to minimise anxiety, ease suffering and ensure death with dignity providing a calm, reassuring and caring atmosphere.

28. Thank you for you time ……..any questions