The NHS Scotland Integrated DNACPR policy Dr Juliet Spiller Consultant in Palliative Medicine Marie Curie Hospice Edinburgh

Aim of CPR – achieve sustainable life CPR = total opposite of traditional idea of a “good death” (peaceful, dignified, comfortable, family presence etc) What is a DNACPR decision? CPR is not to be attempted when patient dies CPR won’t achieve sustainable life (Clinical) The burden of CPR Rx and likely outcome is such that the patient doesn’t want CPR attempted (overall benefit) Protection for patients from aggressive, undignified, unnatural death – not a possible Rx being withheld What is a DNACPR form? Communication tool for that decision

How does a DNACPR decision benefit patients and their families? Reassurance that a treatment that will not work, or that is not wanted, will not be attempted. Reassurance that death will be as natural, dignified and peaceful as is possible even if the death is sudden …………BUT……….DNACPR should not be addressed in isolation

NHS Scotland DNACPR policy Consensus by national steering group Single NHS Scotland policy & documentation “DNACPR” rather than DNAR Emphasising best practice in CPR decision-making (nothing new) Providing framework for improved communication of DNACPR decisions (new)

Consistent communication tool (Decision process and discussions should still be clearly documented in notes) Must be immediately accessible No form does not automatically mean CPR must be attempted Only refers to CPR

Why do people get so upset about DNACPR orders? Common myths & misunderstandings “Not for CPR” means not for anything “being left to die” “being written off” CPR is nearly always successful TV/media survival = 64%! Successful CPR has no harmful effects Wake up smiling and have a cup of tea

NHS Scotland DNACPR policy Does not make clinical decision-making easy Does not make the communication issues easy ……that’s just part of the job!

NHS Scotland DNACPR policy - legal issues …there are none! As long as you; Make a reasonable clinical decision Respect a competent patient’s advance wishes (where CPR can be offered) Use the principles of the Adults with Incapacity Act Scotland to govern your clinical decision where CPR could be offered and the patient lacks capacity to engage.

Jean – 78yrs old with moderately severe dementia, emphysema, diabetes and osteoporosis - Admitted to care home 2yrs ago following the death of her husband and an unsettled 2 months living with her only daughter. - Gradual functional and cognitive decline, worsening eyesight. Acute hospital admission for treatment of chest infection and delirium As the admitting reg do you need to think about CPR?

Picture of framework Available in all areas Quick reference of the policy Extra guidance notes on the reverse

Jean – 78yrs old with moderately severe dementia, emphysema, diabetes and osteoporosis Jean has a terrible few days with delirium but eventually responds to IV Abx and after three weeks is ready to be discharged back to the nursing home. - Sudden collapse on a Friday evening while staff were helping her off the toilet – acutely breathless and distressed - 999 call. No pulse by the time paramedics arrived. CPR attempted. PLE after 20 mins (and rib fractures) - Police arrived, LUCS GP called but unable to provide death certificate - Jean’s body removed to police mortuary until Monday when own GP provided death certificate

Jean – 78yrs old with moderately severe dementia, emphysema, diabetes and osteoporosis If you were Jean’s MoE consultant discharging her back to the nursing home after treating the chest infection what could you have done to ensure a better outcome for Jean? Anticipatory Care Planning talk with Jean and her family Ceilings of care incl DNACPR Communicate with GP Prompt an ePCS Anticipatory prescribing

ePCS - What is it? An electronic Palliative Care Summary (soon to be eKIS – Key Information Summary) An extension to Emergency Care Summary (ECS) & GPs’ palliative care registers - Gold Standards Framework Scotland (GSFS) For use both In Hours & OOH Allows GPs & Nurses to record in one place - Diagnosis, Rx, Pt Understanding & Wishes, Anticipatory Care Plans, review dates, DNACPR decision etc ePCS replaces current faxed communications Info available to NHS24, paramedics, A&E, Acute Receiving Units etc 13

Example of Mobile ePCS information 14

Anticipatory Care Plans Healthcare document Planning for management of anticipated clinical events / situations Must reflect the patient’s wishes & best interests A positive thing to ensure the patient remains in control even if they have lost capacity ePCS / eKIS - the way to make an ACP work in the community

Anticipatory Care Plans - core info. Diagnosis. Welfare attorney/guardian What can be anticipated for this person and how should that be managed? Views and advance decisions about escalation of treatment / place of care / place of death ITU HDU DNACPR IV treatment oral treatment comfort measures only

DNACPR in practice Part of anticipatory care planning – evolving and individualised process Not about asking all patients if they want resuscitated Not about asking family to make a decision (where CPR can be offered) unless they are legally appointed healthcare proxy Clarify prior to discharge / admission if possible Ensure all staff are aware DNACPR decision is only about CPR – any deterioration should be assessed and managed appropriately

Continued reluctance for DNACPR discussions What if they get upset….?

When do I need to discuss DNACPR? If death can be anticipated and CPR might realistically work – benefit vs burden is patient’s decision If you want to have a DNAR form at home with the patient

To discuss or not to discuss….? Timing – it’s not just about CPR outcome Awareness of palliative phase of illness Any indication of willingness for advance care planning conversations? Is talking about death something this patient can get their head around without harmful distress at the moment (or ever)? “Benefit vs. burden” balance of the discussion Different for patients at home For some patients it will never be the right thing For many patients it is a relief and a reassurance

What to say? Warn that discussion might be distressing “Are you up to talking through some “what if?” situations – you might find thinking about this a bit upsetting?” “Can we talk about what you would want to happen if things were to suddenly go wrong?” Offer option of discussion with family “I need to discuss with your family what they should do if an emergency happens – do you want to discuss that or would you rather I just talked it through with them?”

What to say? Be honest and confident when CPR won’t work – avoid “slim chance”, “very small percentage” etc. Be realistic about chances of success and outcome of “successful CPR” ie. Admission to A&E/ITU, death in hospital etc Be willing to talk about consequences of paramedic / police intervention

Informing relatives Need patient consent to discuss with relatives But needn’t always be explicitly for DNACPR Where the patient lacks capacity “you should inform any legal proxy and others close to the patient of the DNACPR decision and the reasons behind it” GMC 2010

Training Information and educational resource available on website www.scotland.gov.uk/dnacpr Awareness sessions run locally – contact resuscitation department Communication aspects of DNACPR discussions DVD available via website

Summary New policy but good practice is not new Legal issues are straightforward – sound & transparent clinical decision-making process AWIA Scotland principles must be followed Communication issues will always be the major area for complaint – be open and honest and document all conversations Discuss as part of advance care planning conversation at a time that’s right for the patient

juliet.spiller@mariecurie.org.uk