RECOGNISING DETERIORATION SENSITIVE COMMUNICATION Dr Hattie Roebuck Consultant

RECOGNISING DETERIORATION & SENSITIVE COMMUNICATION Dr Hattie Roebuck, Consultant Palliative Medicine Harriet. roebuck@colchesterhospital. nhs. uk

Recognising Deterioration & Sensitive Communication: Learning Objectives ◦ Recognising deterioration ◦ Patients who are dying ◦ Patients with a poor prognosis ◦ Sensitive communication ◦ Breaking Bad News ◦ Communication of prognostic uncertainty (hoping for the best, preparing for worst) ◦ Aims of todays teaching: ◦ Informed re prognostication ◦ Advance care planning Types & Legalities ◦ Practice communication skills

Future rise in palliative care need: UK Government Actuary Department, 2012 -based projections of births and deaths in England

Medicalisation of dying Most people have a hospital admission in the last year of life 1 ◦ Around 9% die during that admission. ◦ 21% will have died by 6 months. ◦ Nearly 30% of all hospital inpatients die within a year. 50% of healthcare expenditure is in the last 6 months of life. About 2% of people cared for by a GP die each year. Many more live with advanced illnesses. 1 Clark et al. Palliative Medicine 2014; doi: 10. 1177/0269216314526443

Thinking and planning ahead: which patient and when? Patients on the GP Palliative Care Register Patients on a GP Palliative Care Register before death 100% % of Patients 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% 25. 5% 80% 18. 8% 20% 74. 5% None Cancer 51 Chronic Illness 138 Frailty Dementia 128 PCR 149 32 32 It could be another year or two or week or two or tomorrow…. . Cardiologist 2 -6 81. 2% I’m not sure about Palliative Care because he’s not really terminal…. GP 2005

Identification – Prognostic paralysis • There is no tool that predicts prognosis for an individual patient. • People die unexpectedly. • Even people who look like they might die soon can improve. • Integrated, supportive and palliative care is the way forward….

◦ What is identification of those with a poor prognosis likely to achieve? ◦ 1. More appropriate treatment given ◦ 2. Patients & families prepared ◦ 1. NEJM Oct 1 st 2014 Supplement R Bernacki, S Block ◦ ‘Communication About Serious Health Goals: A review and Synthesis of Best practice’ • 2. BMJ 2010 K. Detering ‘The Impact of advance care planning on end of life care in elderly patients: randomised controlled trial’

RCT on impact of ACP in elderly ◦ RCT 309 patients age >80 yrs ◦ 154 received advance care planning ◦ End of life care wishes known & respected in 86% intervention group, cf 30% control p<0. 001 ◦ Family members less stress, anxiety & depression p<0. 001 ◦ Patient & family satisfaction higher in advance care planning group ◦ BMJ 2010 K. Detering ‘The Impact of advance care planning on end of life care in elderly patients: randomised controlled trial’

Outstanding questions: ◦ Not all pts identified by SPICT as poor prognosis will have specialist palliative care needs. How best to provide ongoing support? ◦ How to hand over information on EDS when pt reluctant to engage in conversations re health ◦ Is there a need for training re communication skills for more doctors undertaking advance care planning conversations?

Cultural sensitivity in discussing prognosis

What is an advance care plan? Explores patients wishes should their health deteriorate • Comes into effect when patient has lost capacity • Assists doctors/ HCP with ‘best interests’ decision making Differs from • Treatment escalation plans as patient led • General care plans in that it anticipates a deterioration in the patients health

Aspects to consider with advance care planning ◦ When to do it ◦ Who should do it ◦ Communicating the patients wishes with relevant other HCPs (GPs, hospital teams, hospice)

Different forms of advance care plans: 1. Advance Statement of Wishes (values, priorities) • Preferred Place of Care/ Death • Decisions regarding resuscitation 2. Lasting Power of Attorney 3. Advance Decision to Refuse Treatment NB advance care plans can also be called living wills, advance directive etc

My Care Choices Register - stats ◦ >2, 500 patients have had a MCCR created ◦ North East Essex has approx 3, 700 deaths pa ◦ 1 in 3 patients has MCCR register last year ◦ >70% pts with MCCR dying in place of choice ◦ Effective & powerful intervention ◦ Electronic advance care plans allow improved communication of wishes ◦ Do early!

Lasting Power of Attorney ◦ Nominated person – chosen by patient when has capacity - to speak for them should they lose capacity. ◦ Registered with Office of the Public Guardian (£ 110) 2 types: ◦ ‘Personal welfare’ LPA can make decisions on health issues ◦ Must act in best interests of patient ◦ For life sustaining decisions, this power is expressly given in the Office of the Public Guardian paperwork

Advance Decisions to Refuse Treatments • If refusing potentially life sustaining treatments must be: – Written – State that the refusal is to apply ‘even if my life is at risk’ – Signed & Witnessed Example: I do not want to have antibiotics in the event of a chest infection even if my life is at risk

Advance Decisions to Refuse Treatments Are legally binding = a refusal to give consent Unusual legal features of ADRT: 1. Do not require medical input 2. Formal assessment of capacity not required prior to creating an ADRT.

Advance Decisions to Refuse Treatments • Clinician must decide if ADRT is – Valid (ie signed, witnessed, made when had capacity, pt seemed to have understand consequences of decision etc) – Applicable to the circumstances – Example: I do not want to have antibiotics in the event of a chest infection even if my life is at risk • Furthermore, validity may be questioned if the patient recent actions inconsistent with the directive. • If querying validity, then OK to treat in interim (if in best interests)

Advance Decisions to Refuse Treatments Finally, in a ADRT patients cannot • refuse basic care (offer of food, oral fluids, washes) • demand treatment, only refuse

‘SPIKES’- communication model for breaking bad news

Opening the discussion • How do you feel your health has been lately? • I’ve noticed some things that have been worrying me… (eg more breathless, less mobile) • Have people spoken to you about this before? What was said? • I’d like to know how you would like us to treat you if you were to be less well…

Communication principles ◦ Establish patients understanding of their condition, build on it ◦ Small chunks of information ◦ Checking patient seems OK to proceed (intuitive/ directly by asking) ◦ Ideally (? Essential to have) with family member to hear & support ◦ ACP often takes several conversations to explain the situation & the options ◦ NB some patients won’t want to do ACP

Useful Phrases Hope linked with concern We hope the (treatment) will help, but I am worried that at some stage, maybe even soon, you will not get better…. What do you think? I wish we could give you more treatment…could we talk about what we can do if that’s not possible? Generalisation Sometimes people want a family member or a close friend to help make decisions for them if they get less well in the future. Have you thought about that? Living well with uncertainty Can we talk about what is most important for you now and in future, and how we might cope with not knowing exactly what will happen and when?

Summary ◦ Identifying patients with a likely poor prognosis & informing them of our concerns about their health benefits them. ◦ Advance care plans can be legally binding (LPA, ADRT) or looser statements of priorities & wishes to help doctors (& families) with best interests decision making. ◦ My Care Choices is one electronic ACP record that allows pts wishes to be shared across organisations, very successful intervention ◦ SPIKES is a useful tool for breaking bad news. Communicating uncertainty re prognosis can be achieved in a way that helps patients, so that ACP occurs.

1. Specific Problems with ACP in COPD patients ◦ Prognosticating hard ◦ Unpredictable dx trajectory The gold standards frameworks criteria (suggesting palliative care involvement may be appropriate for COPD pts) are: ◦ FEV 1<30% predicted ◦ Recurrent hospital admissions (at least 3 in last 12 months due to COPD) ◦ MRC grade 4/5 - ie breathless after 100 metres on the level or confined to house ◦ Fulfils LTOT therapy criteria ◦ Signs/ symptoms of right heart failure ◦ More than 6 weeks systemic steroids for COPD in preceding 6 months

2. Problems with ACP in COPD patients ◦ What do patients know? ◦ 2008 study showed 63% house bound pts with end stage COPD & refractory symptoms & a recent hospital admission did not know they were likely to die from COPD

3. Problems with ACP in COPD patients ◦ Breathlessness is a very frightening symptom

What about ICD’s? ◦ Important to Explain: ◦ Deactivating ICD will not stop pacing component of device ◦ It will prevent uncomfortable shocks being delivered if health deteriorates ◦ Deactivating the ICD does not require surgery like when it was inserted – all done via a remote control device ◦ Patient can choose to deactivate/ not

Communication tips for angry relatives ◦ Diffuse the anger Listen & do not interrupt ◦ Use of silence to absorb tension. ◦ Calm body posture ◦ Demonstrate you are listening Repeat back phrases ◦ ->Explanation ◦ Try to connect Changing tack from factual explanation (if this seems ineffective) to acknowledgement of emotional aspects of case

◦ How to use zero tolerance ◦ Not acceptable for patients/ relatives to swear/be violent with staff. ◦ Where is the line drawn when it comes to verbal aggression? ◦ Warning shot ‘I really want to help you. I can see how upsetting this is but I am feeling quite threatened by the way you are talking to me… ‘ ◦ ‘I am afraid I may have to leave the room unless we can start working together on this’.

Summary ◦ Any questions? ◦ Please could we have feedback on how you found this session. ◦ harriet. roebuck@colchesterhospital. nhs. uk