Supporting a dignified death in patients who have an Implantable Cardioverter Defibrillator (ICD)

Patients with implantable defibrillators are out there and coming your way Supporting wellness and independence in older people living with long term conditions is the focus of these two days…however There will come a time when we will need to use our nursing skills and compassion, to provide support and ensure a dignified death

Heart failure management is difficult with periods of decompensation and periods of relative stability. How do we know when the end of life is coming?

To think about…. When the tablets stop working More frequent admissions to hospital Possibly longer length of stay Patient saying they have had enough Quality of life deteriorating This is the time to start talking to the Doctors patient and family.

Challenge to each and everyone of you Go back to your workplace Identify patients who have an ICD in-situ Where are they on the life continuum? Is there a “Flag” highlighting that they have an ICD ? ICD’s save lives - death at some stage is inevitable.

Introducing Case study –A dignified death ICDs – How they work and save lives. Controlled and emergency deactivation of the shocking component The WDHB Guideline on Deactivation

Co-Joint Management of a Heart Failure Patient at End of Life Catherine E. Callagher CNS Heart Failure Cardiologist, GP, CNS Heart Failure Hospice Nurse Patient, wife and daughter 2012

A lovely man March 2012 81 years old Retired school teacher Enthusiastic lover of life Wanted to complete the “Bucket List” he and the love of his life, his wife of 50 years, have planned First on his list …. to drive again!

Dilated Cardiomyopathy Left Ventricular Ejection Fraction 10-15% (normal 55%) ICD inserted August 2011 for non sustained Ventricular Tachycardia Moderate to Severe Tricuspid Regurgitation Permanent Atrial Fibrillation Renal Impairment - Creatinine – 176-186 Starr Edwards Mitral Valve Replacement 1992

Admissions 14th-19 April 2005 Heart Failure 8th - 10th July 2011 Heart Failure 8th - 21st August 2011 VT, ICD implanted 2nd - 6th Sept 2011 Breathless, Haematoma at ICD insertion site 15th - 16th Sept 2011 Atrial Fibrillation and Panic Attacks 15th - 30th Nov 2011 Heart Failure 31st Jan - 14th Feb 2012 Heart Failure

January - April 2012 The last 6 months Daily contact Titration of Diuretics ACE had been stopped secondary to hypotension Weekly U&E's Allowed to drive (no VT 6 months) Cardiologist set clinical parameters Intensive surveillance to maintain stability

May 2012 Physical deterioration- pt cachexic More unsteady on feet – falls GP and HF Nurse discuss deterioration HF Nurse talks to Cardiologist about ICD deactivation at some stage Cardiologist advises treat symptoms

11 June 2012 Deterioration continues, sleeping a lot of day Oedema difficult to stabilise GP discusses referral to Hospice with Pt and wife Wife calls me crying I make home visit. I sit on end of their bed and we talk about death, dying and deactivation of ICD - and bucket lists

He declined further admission June 2012

12 June 2012 Meeting at pts home GP, Hospice, Nurse, HF Nurse, Pt and Wife Pt declines any further interventions c/o increased abdominal discomfort and dyspnoea GP and Hospice Nurse organise relevant medications to increase his comfort HF Nurse to arrange home visit to deactivate ICD – now imperative

No More Driving

14 June 2012 Home visit by HF CNS and Cardiology Physiologist Pt very anxious about deactivation process Has had no underlying episodes of VT since last check ICD shocking component deactivated This is a significant marker that end of life is occurring -

HF CNS steps back Hospice team now leads, initiating appropriate medications and support to pt, wife and daughter Pt passes away peacefully in his own bed at midnight 17th June 2012 Wife and daughter present RIP Never to be forgotten