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

Ethical Principles Non-malevolence Non-malevolence Beneficence Beneficence Respect for autonomy Respect for autonomy Justice Justice

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

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

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

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

Mental Capacity Presumed present Presumed present Best interests Best interests Proxy decision-makers Proxy decision-makers

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

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

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. …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. Preferable to emphasise end-of-life care in general, rather than specifics re DNAR.

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

Discussion not appropriate prior to documentation : Patient is aware they are dying and have expressed a wish for comfort care. 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. 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. The patient is clearly in the terminal phase and the doctor believes that the harm of discussion outweighs the benefits.

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

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

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

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

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