‘What’ to communicate – knowing ‘how’ isn’t enough

1. ‘What’ to communicate – knowing ‘how’ isn’t enough Dr Fiona Randall Consultant in palliative medicine

2. Case 1 • A frail elderly man with inoperable oesophageal cancer extending down into the stomach, with a stent in situ, became SOB and had a CTPA to look for PEs at the oncologist’s request. No chemo options and no surgical options re tumour. • CT showed a PE • Warfarin was started. • What information should this pt be given?

3. Case 1: should pt be told • About the risk of bleeding? • About morbidity/mortality of PE? • About comparative ‘ways of dying’? • Should his view be sought re warfarin? • NB: warfarin isn’t drug of choice here • That consultant physician disagreed with oncologist re CTPA and Rx of PE?

4. Case 1: outcome • Patient was not, apparently, given information re bleeding risk by oncologist when warfarin started, but did know it was advised by the oncologist • He was informed of bleeding risk by palliative medicine consultant later. • He had a haematemesis, after which he refused further warfarin.

5. Case 2 • A lady in her late 60s was found to have widespread metastases (liver, lung, bone, adrenal) from cancer of unknown primary (likely ovary or breast on histology) • Severe fatigue, in bed all the time, symptoms for 6 months • Commenced on chemotherapy: what information ought this lady to have been given?

6. Case 2: should pt be told • That the likelihood of response to chemotherapy with unknown primary is only around 30%? • That therefore 70% of patients get side effects and no benefit? • That her performance status (spending nearly all time in bed) would normally preclude palliative chemotherapy? • What gain a ‘response’ might mean?

7. Case 2 cont’d • CT brain scan was normal pre-chemo • But later double vision developed (VI cranial nerve palsy) • MRI brain:base of skull mets, no brain mets, to see oncologist re RT • Husband asking for more info, concerned about pt’s deterioration. • What should be communicated to him?

8. Case 2 cont’d • The patient had started chemotherapy, hair falling out rapidly, • said to clinical psychologist that she was glad that hair was falling out as this ‘meant that the chemotherapy is working’. • It actually means no such thing. • Should the patient’s misunderstanding be corrected? If so, by whom?

9. Case 3 • A 70 yr old man was found to have bladder cancer, no metastases, treated with L ureteric stent for obstruction of L kidney, then RT. • CT scans 3 months later showed large liver mets in R lobe of liver, small lung mets, all asymptomatic and • Renal function deteriorated, R nephrostomy inserted, L ureteric stent in situ and • He was hospitalised for ischaemic R foot due to arterial thrombosis. Toes blue & cool.

10. Case 3 cont’d • Pt was told that bladder cancer was inoperable, and about poor renal function for which urologists were not planning to intervene. Urea 25, K 4.9, eGFR 22 • Vascular surgeons advised Warfarin after initial heparin infusion (for improving foot). INR 1.2 pre-warfarin. Not for vascular surgery. • Pt lived alone, still ran a business and keen to sort out things with his clients ‘over a few months’. • What info should this patient be given about Rx now, and as part of advance care planning?

11. Case 3:should pt be told • That there was low likelihood of warfarin restoring circulation? • That warfarin might cause bleeding (bladder tumour + liver mets)? • That LMW heparin is contra-indicated due to renal failure? • More about life expectancy (time)? • About likely progress of ischaemic foot and symptoms from it?

12. Case 3: should pt be told • That as renal impairment worsens he is likely to lose capacity so • Should you explain the options for advance care planning (advance statement, ADRT, LPA appointment)? • That the doctors caring for him think renal failure is a better end than infection due to ganrenous foot?

13. Case 3: outcome • Patient was transferred to EMH • Warfarin was discontinued on the grounds that risks exceeded any foreseen benefit (after D/W surgeon at SMH) • Pt died of renal failure within 1 week, and before foot went frankly gangrenous.

14. Pt with capacity for the decision: Consent process, GMC para 5 • ‘The doctor and patient make an assessment of the patient’s condition, taking into account the patient’s medical history, views, experience and knowledge. • The doctor uses specialist knowledge and experience and clinical judgement, and the patient’s views and understanding of their condition, to identify which investigations or treatment are likely to result in overall benefit for the patient.’

15. GMC: consent para 5 • ‘The doctor explains the options to the patient, setting out the potential benefits, risks, burdens and side effects of each option, including the option to have no treatment. • The doctor may recommend a particular option which they believe to be best for the patient, but they must not put pressure on the patient to accept their advice.’

16. GMC: consent para 5 • ‘The patient weighs up the potential benefits, risks and burdens of the various options as well as any non-clinical issues that are relevant to them. The patient decides whether to accept any of the options and, if so, which one. They also have the right to accept or refuse an option for a reason that may seem irrational to the doctor, or for no reason as all.’

17. GMC: sharing information ‘How much information you share with patients will vary, depending on their individual circumstances’ • ‘the nature of their condition, • The complexity of the treatment, and • The nature and level of risk associated with the investigation or treatment.’

18. GMC: obligations re info ‘You must [my italics] give patients the information they want or need about: • The diagnosis and prognosis • Any uncertainties about the diagnosis or prognosis, including options for further investigations • Options for treating or managing the condition, including the option not to treat • The purpose of any proposed investigation or treatment and what it will involve

19. GMC: obligations re info • ‘The potential benefits, risks and burdens, and the likelihood of success, for each option; this should include information, if available, about whether the benefits or risks are affected by which organisation or doctor is chosen to provide care • ….. • Any treatments that you believe have greater potential benefit for the patient than those you or your organisation can offer.’

20. GMC: what if pt declines info? • ‘No one else can make a decision on behalf of an adult who has capacity.’ • ‘If, after discussion, a patient still does know want to know in detail about their condition or the treatment, you should respect their wishes, as far as possible. But you must [my italics] still give them the information they need in order to give their consent to a proposed investigation or treatment.’ • If they decline basic information, it might mean their consent is not valid; they must be told this.

21. GMC: withholding information • ‘You should not withhold information necessary for making decisions for any other reason, including when a relative, partner, friend or carer asks you to, unless you believe that giving it would cause the patient serious harm. In this context ‘serious harm’ means more than that the patient might become upset or decide to refuse treatment.’

22. Advance care planning • When discussing with a patient what treatment or care they think they would/would not want in the event of loss of capacity (an advance care planning discussion, possibly resulting in an advance statement) • They will need virtually the same information as re consent. • What info should they be given re location of care options, during illness and at death?

23. Patient lacks capacity for the decision:Best Interests process • As stipulated in the Mental Capacity Act, the decision maker (usually health care professional) must make a decision based on the patient’s Best Interests • In seeking the relatives’/friends’ views re what patient would have wanted and pt’s best interests, relatives’/friends will need the same information as the patient would have needed to consent. • Info shared on basis of patient’s best interests, but remember confidentiality to patient.

24. Now, back to our cases….