Decision-making at End-of-Life

1. Decision-making at End-of-Life Dr Mary Kiely Consultant in Palliative Medicine Calderdale & Huddersfield NHS Foundation Trust

2. Ethical Principles • Non-malevolence • Beneficence • Respect for autonomy • Justice

3. Human Rights Act, 1998 Article 2 Right to life 3 Freedom from inhuman or degrading treatment 8 Respect for privacy, family life 10 Freedom of expression 14 Freedom from discriminatory practice

4. Who makes treatment decisions? Clinical decisions• years of expertise• evidence-based practice• knowledge of risks and benefits• medical futility

5. Patient Participation Discussions about proposed treatments and outcomes:•40-80% cancer patients want active role• only 10% feel they should have the major role• many opt to give their doctor authority

6. Communication issues • As much, or as little, as is wanted • Format and manner which are understood • Honesty • Breaking bad news as opposed to treatment decision

7. Mental Capacity • Presumed present • Best interests • Proxy decision-makers

8. Decisions Relating to Cardiopulmonary Resuscitation: A Joint Statement from the BMA, the Resuscitation Council (UK) and the RCN October 2007

9. Presumption in favour of CPR • Do not attempt CPR if it will not restart the heart/breathing • Discussion about CPR with patients is not always necessary

10. Communicating DNAR decisions • ‘…not necessary to initiate discussions re CPR…but careful consideration should be given as to whether or not to inform the patient of the decision.’ • Preferable to emphasise end-of-life care in general, rather than specifics re DNAR.

11. Discussion recommended prior to documentation: • When illness trajectory is uncertain. • In response to a patient or carer request or question about CPR. • When the patient has made it clear that they wish to be informed of all health care decisions.

12. Discussion not appropriate prior to documentation: • Patient is aware they are dying and have expressed a wish for comfort care. • Patient prefers not to discuss end-of-life care, giving responsibility for decisions to their doctor or carers. • The patient is clearly in the terminal phase and the doctor believes that the harm of discussion outweighs the benefits.

13. Take care with language used • Avoid describing CPR as “doing everything” • “Is that okay with you?” can be interpreted as a request for permission or consent.

14. Factors linked to non-survival/non-successful CPR: • advanced malignancy • immobility • pneumonia • renal failure • dementia • age over 70 • hypotension • primary respiratory arrest

15. Decision-making at the end-of-life • Consider likelihood of treatment success • Agree desired treatment outcomes • Limit treatment to quality of care • Involve patients with capacity • Communicate with family members • Present in terms of gains not losses

16. Useful questions for patients with capacity • How do you feel things are going? • What do you feel is causing you the most problem/bother at the moment? • How do you see the future? • Do you feel you have enough information on what is happening/might happen in future? • Have you thought about where you’d like to be if things take a turn for the worse?

17. The Role of Self Care • It is important to reflect on end-of-life discussions. • Giving of oneself emotionally can take its toll. • Develop support mechanisms: debriefing, collaborative team relationships communication skills training.