1. The National DNAR Policy Benefits and Hazards Shaun O’Keeffe Galway University Hospital

2. Burdensome treatment and undignified death Enough or Too Much? Fail to provide adequate care

3. “I knew CPR wouldn’t save our marriage, but I had to try”

4. DNAR in UCHG (McNamee & O’Keeffe IJMS 2004) Seventeen (3.5%) of 485 patients (= 35.4% of the 48 patients close to death) were identified as not for resuscitation. Written confirmation of the DNR order in the nursing notes for 14 (82%) and in the medical notes for 15 (88%) patients; In two cases, it was reported that doctors were reluctant to write down the agreed decision. Discussion with patient (2), family (10) or both (1) was recorded in 14 cases.

5. CPR in Irish Long-Stay Units O’Brien & O’Keeffe (Ir J Med Sci 2009) 16% of residents die each year CPR ever in 40%, advanced CPR in 10% Policy in 55%, written in 13% Include –All residents for CPR –None for CPR unless pt/ family request –Nobody over 80 years for CPR –CPR only for staff and visitors

8. General principles Presumption in favour of providing CPR Need for individual decision making – balance the benefits and risks Involving the individual in discussions regarding CPR Respecting an individual’s refusal of CPR

10. Need to consider CPR and DNAR ? Cardiorespiratory arrest is considered unlikely: –‘..general presumption in favour of CPR… However, if an individual indicates that he/she wishes to discuss CPR, then this should be respected. Also, the wishes of individuals with an advance care plan refusing CPR under specific circumstances should be respected if the directive is considered valid and applicable to the situation that has arisen’. Cardiorespiratory arrest is considered possible or likely: –‘Advance care planning, including CPR/DNAR is often appropriate …and should occur in the context of a general discussion about the individual’s prognosis and the likelihood that CPR would be successful, as well as his/her values, concerns, expectations and goals of care’.

11. Cardiorespiratory arrest, as a terminal event, is considered inevitable –[If] ‘death is considered to be imminent and unavoidable…cardiorespiratory arrest may represent the terminal event in their illness and the provision of CPR would not be clinically indicated…. In many cases, a sensitive but open discussion of end-of-life care will be possible in which individuals should be helped to understand the severity of their condition. However, it should be emphasised that this does not necessarily require explicit discussion of CPR or an ‘offer’ of CPR. Implementing a DNAR order for those close to death does not equate to “doing nothing”……’

12. Role of family or friends in discussions regarding CPR If the individual wishes to have the support or involvement of others, such as family or friends, in decision making, this should be respected. If the individual is unable to participate in discussions due to illness or incapacity, those with a close, on- going, personal relationship with the individual may have insight into his/her preferences, wishes and beliefs. However, their role is not to make the final decision regarding CPR, but rather to help the healthcare professional to make the most appropriate decision. Where CPR is judged inappropriate, it is good practice to inform those close to the patient, but there is no need to seek their ‘permission’ not to perform CPR in these circumstance.

13. Why the policy can’t solve it all! Applies to all HSE settings (community, long- stay, hospice, acute hospital) Cannot cover all situations that may arise Documentation and dissemination issues Health care professionals: need for interpretation, empathy, common sense, knowledge and communication skills Patients, relatives, public: need for better awareness of limitations of medicine Regulators: need for flexibility

14. Communication and Dissemination of DNAR Decisions Service providers should have systems in place to ensure that the fact that a DNAR decision has been made is readily available to staff (who may not always be familiar with the individual patient/ service user) to ensure that it is complied with in the event of an emergency. Consider a form to be placed in a prominent position towards the front of the notes, noting, at a minimum: –that a DNAR decision has been made (or an advance care plan or directive is in place), –whether review is intended or not and –referring those who require more information, to the date(s) (and perhaps chart volume) of the relevant medical notes or to the location of the advance care directive or plan.

15. Service providers should have systems in place to ensure that Do-Not-Attempt-Resuscitation decisions do not become ‘lost’, for example, if an in-patient stay is prolonged, if a new medical chart volume is opened or due to staff changes and turnover. Approaches that may be helpful include: –Routine communication of DNAR decisions at handover or on transfer of care. –Mechanisms to ensure that the ‘front form’ alerting staff to the existence of a DNAR decision and a copy of the primary documentation of DNAR decisions are photocopied to new medical chart volumes

16. Service providers should have systems in place to ensure that valid Do-Not-Attempt-Resuscitation decisions made in one setting are effectively communicated if the patient/ service user moves to another setting. If an indefinite DNAR order is made, it is important that this is communicated effectively across settings. This requires that those in settings other than that in which the original decision was originally made can be confident that it was a valid decision, that is one made, after appropriate consultation, by somebody with the requisite expertise or in the case of an advance directive or plan that it was made in a valid fashion by the person themselves. This would …require, at a minimum, information on who had made the decision, why and whether it was intended to have indefinite effect.

17. How it can go wrong? Spirit vs letter of policy Obsession with forms and documentation –Automatic reviews –‘Do they have capacity?’ Power struggles –‘I’m the decider!’ –Who’s the ‘next of kin’ Mixing ethics and economics

18. Age Concern (2000) and Ebrahim (BMJ 2000): –Rampant ageism and disregard of criteria in use of DNR orders in NHS. –Legislation required. Soper (BMJ 2002): ‘An unmerciful end’ for dying patients driven by fear of litigation or of complaints by relatives –"I knew she was dead, doctor, and I told them that she wouldn't have wanted them to try and revive her, but they asked if I had that in writing." Britain

19. Futility - ‘an ethical trump card’? No obligation to offer or to discuss futile treatment BUT What does futile mean? Futile for whom? Many clinicians view futility the way one judge viewed pornography. They may not be able to define it, but they know it when they see it!

20. Are we good at predicting outcomes? –Quantitative thresholds for futility are arbitrary –Often involves probability: Chance of success rarely zero –‘Will he come off the ventilator this time?’ ’He’s one tough cookie. I’ve never seen anyone bounce back from an autopsy before’.

21. Physicians’ futility judgements rely more on values and biases than on evidence (Curtis, JAMA 1995) –Race, age, social class and cause of illness all influence “Because of your age, I’m going to recommend doing nothing.”

22. Overestimation of Benefits TV major source of public information (Miller, Arch Int Med 1992) ‘’’I’m afraid there is really very little I can do’

23. CPR on US medical television shows (Diem et al NEJM 1996) –67% survival to discharge Prognosis of 24h+ coma in soap operas (Cassaret BMJ 2005) –Fifty seven (89%) patients recovered fully –On the day they regained consciousness, 86% had no cognitive deficit or residual disability

24. Very difficult to hold discussion with acutely ill patients ‘To hold vulnerable patients.. in the glare of autonomy, carefully explaining their bleak prognosis and insisting lawyer-like on a decision.. seems barbaric to many’ (Finucane JAGS 1999) Bad news poorly processed and not remembered well Denial—may lead to focus on trivial but controllable matters Fear of abandonment “withdrawing care”, “Stopping care.” Don’t understand medical situation Pitfalls in Communication: Patient

25. Pitfalls in Communication: Physician Physician’s communication styles can worsen misunderstanding –Use of medical language when need to discuss values, QOL –Jargon: “usually” “most of the time” “cannot rule out” “futile” –Semantics: “everything done” “vegetable” Multiple voices of heath care team Goals not clarified: what parties believe will be achieved by treatment or intervention Decision-making reduced to power struggle between patient and clinician Failure to ask patient (early enough)! Goold SD et al. Conflicts regarding decisions to limit treatment. JAMA 2000.

26. Low agreement between surrogate and patient preferences (e.g. Ouslander et al, Arch Intern Med 1989) Disagreement / ‘Daughter from California syndrome’ Older people want to be consulted themselves Guilt of family members –Asked to sign patient’s death warrant –Physicians ask that they take responsibility for medical decisions Intrinsic family issues Conflict of interest Pitfalls in Communication: Family

27. Good Ethics makes Good Economics? 30% of hospital costs for 5% of patients who die that year 40% of costs of last year of life in the last month Avoid ‘futile care’ and save ‘billions’? An illusion (Emanuel & Emanuel, NEJM 1994) –Humane care not cheap –Potential savings overstated A distraction and contaminant ‘Good news Mrs Jones - I think we got it all’

29. O’Keeffe et al Eur J Med 1993 ; Cotter et al Age Ageing 2008