Palliative Management of Heart Failure Dr Mags Clifford, Consultant in Palliative Medicine Ciara Wynne, Clinical Nurse Specialist

Overview Case presentation – Mrs Begum Audience discussion on case Approach to care of person with heart failure under headings of WHAT needs to happen / WHEN / WHERE/ and HOW to make it happen Complete Mrs Begum’s story Questions and comments

Introduction to Mrs Begum Initially referred to St Josephs Community Palliative Care Team by a Heart Failure nurse due to frequent A+E admissions and need for advance care planning Mrs Begum had a history of Heart Failure, Pulmonary Hypertension, AF, Metallic Mitral Valve, Chronic Kidney disease stage 3, CVA Mrs Begum lived with her husband whom had advanced Parkinson’s, and their son whom was main carer to both of them.

First visit to Mrs Begum Initial presentation at first visit: Mobile with assistance Slightly breathless on exertion-not using any inhalers/opiates/benzodiazepines Frequently accumulating oedema usually resulting in hospital admission for diuresis Episode of cellulitis related to oedematous effect in skin integrity Difficulty sleeping (was using flat double bed to sleep) Pruritus Abdo/Torso pain-sharp stabbing-using oxynorm Facial swelling, extremely raised JVP Family report attending A+E approx every 4 weeks

Audience Discussion How would you approach this? What are Mrs Begum’s options for her future care?

What should happen? Holistic Assessment : Social: Are there issues specific to Tower Hamlets. Spiritual: Consider how Advance Care Planning may be affected Psychological: Multifactorial Physical: Just one component ACP: Do you know what peoples options are? Palliative approach to care Quality of Life intended outcome

When?

Disease Trajectories

Where?

Where? – “In the bed you’re in” (Dame Barbara Monroe, St Christopher’s Hospice)

Can we achieve “palliative care in the bed you’re in” for Heart Failure? Challenge Preferred place of care and death ACP discussions / future planning Hospital avoidance Anticipatory prescribing / crisis plan Home Support available / DNACPR and other documentation Care Home Staff support / Communication Hospice Unpredictability / length of stay

The reality……. 1,000 deaths per year in Tower Hamlets 59% hospital 7% care homes 10% hospice 24% own home Cardiovascular disease – 28% of deaths (Tower Hamlets JSNA 2015 / 16)

Physical Symptom Management Heart failure meds Burden vs benefit Reverse the reversible / Palliate the irreversible

How?

Symptom Assessment Open-ended Q rather than listing off symptoms “Popular” versus “orphan” symptoms Symptom assessment tools (e.g. IPOS)

Symptom Prevalence (Solano, Gomes and Higginson. JPSM. Jan 2006) Heart Failure Cancer Breathlessness 60-88% Breathlessness 10-70% Fatigue 69-82% Fatigue 32-90% Pain 41-77% Pain 35-96% Anxiety / Depression 9-49% Anxiety / Depression 3-79% Insomnia 36-48% Nausea 17-48% Nausea 6-68% Constipation 38-42% Anorexia 21-41% Anorexia 30-92%

Breathlessness

Pharmacological Opioids Lower starting doses than pain (e.g. Oramorph 1mg TDS) Most evidence for Morphine Benzo’s Break anxiety spiral Start with short acting (e.g. Lorazepam) Oxygen Only if hypoxic

Non-pharmacological Hand-held fan Positioning Breathing techniques / retraining Exercise

Positioning

Breathing Techniques “Just take a nice deep breath” Vs “When in doubt breathe out” The “Window” technique Do not avoid exercise completely

Mrs Begum’s symptom management Oedema -> Frusemide 80mg CSCI / 24 hours Breathlessness -> Fentanyl patch with PRN Oramorph (supplemented with Alfentanil CSCI in last days of life), occasional Lorazepam, hand held fan Nausea -> Haloperidol Insomnia -> Zopiclone / presence of family Anorexia -> Not an issue!!

Psychological Multi-factorial Loss of independence Loss of role in the family (mother/grandmother) Communication barrier-Language issues

Social Complexity of living with husband with Parkinson's. Son main carer. Frequent interruption to daily living because of hospital admissions. Housing structure: Tower Hamlets specific- Inadequate homes Financial: Son had concerns as he was main carer to two frail parents-no other earning capacity- wanted to start his own business- sisters had young families- could not be as available as son.

Spiritual Devout Muslim faith Even when so ill she was barely conscious most of the time, would still pray five times a day Frequent visits from Imam Sense of “calm” in the room Died during Ramadan

Final part of Mrs Begum’s story Very prolonged hospice admission Appeared to be starting to die Jan 2016 – large GI bleed due to gastric varices, not fit for hospital transfer, generalised oedema, breathless, globally deteriorating Never improved but lived for several months (?? How ??) Died during Ramadan.

Summary Identify when to adopt a palliative approach – SPICT tool NB A palliative approach does not preclude continuing life prolonging treatments Diuretics may have a role in symptom management of heart failure up to the end Unpredictable illness trajectory Some things are out of our control!!

Thank you / Questions