ICDs and end of life

BHF arrhythmia nurse Wendy Churchouse

Implantable cardioverter defibrillators save lives, but if they are not managed correctly they can make it harder to have a peaceful death. Sarah Kidner discusses deactivation.

It has taken Carole Docherty 11 years to discuss the sensitive topic of deactivating her implantable cardioverter defibrillator (ICD) with her family. After learning about the issue from BHF arrhythmia nurse Wendy Churchouse (pictured right), Carole is appearing in a DVD aimed at healthcare professionals to encourage them to talk to patients about deactivation.

Carole, aged 65,  from Carmarthen, was fitted with an ICD after being diagnosed with arrhythmogenic right ventricular cardiomyopathy, a condition that can cause sudden cardiac death. Sadly, the diagnosis came as a result of having tests conducted after her son had died from the same inherited heart condition.

ICDs are fitted in people with potentially life-threatening heart rhythm disturbances. For people like Carole, an ICD is a potential life saver, as Dr James Beattie, Consultant Cardiologist at Heart of England NHS Foundation Trust in Birmingham, explains: “An ICD is there as a safety net for people who are prone to sudden cardiac death. When the device picks up a fast arrhythmia [irregular heartbeat] that looks lethal, it shocks the patient internally to return the heart to a normal rhythm.”

However, Carole didn’t see the ICD that way at first. “I felt as if I had an alien in my chest and that I was a freak. When I went to the shops, I would tell my husband exactly how long I was going to be there for and what time to expect me back,” she says.

“I had to keep telling myself that this device was keeping me alive. It took a long time for me to accept it, especially as I didn’t feel I had received much information before it was implanted, other than the fact that I needed one.”

Turning off ICDs

Carole says she was also unaware that it may become necessary to switch off – or deactivate – her ICD. She first became aware of the issue of deactivation when it came up at her local support group, run by BHF arrhythmia nurse Wendy Churchouse.

It seems illogical to discuss a device that is going to save your life and to not discuss dying when that device may have an impact on that

“[Before that] the issue of switching off the device was never mentioned, and I never thought about what I would do if I had a terminal illness, or was suffering from dementia,” says Carole.

Deactivation may become necessary in the latter stages of a person’s life, explains Dr Beattie, who chairs the National Council for Palliative Care’s heart failure group: “The heart rhythm is often unstable when people are close to death. That might trigger heart rhythm changes and device activity.”

What that means is that if the heart goes into a potentially lethal rhythm, the ICD delivers a shock to restore it to normal, just as an external defibrillator would. However, the difference is that an ICD keeps automatically delivering this shock unless you deactivate it, which can be very distressing for someone in their final stages of life, as well as for their loved ones and hospital staff.

“It can be devastating for relatives and staff if a patient’s heart gives up and the ICD continues to shock,” says Catherine Kelly, BHF Director of Prevention, Survival and Support.

Dying with dignity

To ensure a dignified death it may, therefore, become necessary to deactivate a patient’s ICD (or, where a device acts as a pacemaker and a defibrillator, only the element of the device that administers the shock). “If death is inevitable then deactivation of the device should be considered to prevent causing a distressing death. It’s as simple as that,” says Dr Beattie.

Read our FAQs about ICD deactivation.

Knowing when to deactivate a device isn’t easy, however, in particular in patients with severe heart failure. The course that heart failure takes is unpredictable and “often people have survived and recovered from an earlier cardiac arrest,” says Dr Beattie. “But they are slipping down a slope and there will come a point where death is inevitable and imminent,” he adds.

Family involvement

At this point, or when the distress caused by the ICD outweighs the benefit, device deactivation should be considered. Carers and family will be a key part of the decision and it’s important they are involved in ongoing discussions and, again, at end of life. “My family understands that if I’m not happy with my quality of life or the device is causing me distress, it needs to be turned off,” says Carole. “But it has taken me 11 years to have this conversation.“

It needs to be discussed at various points through the patient’s life, so when it comes to making a decision, it doesn’t come as such a big shock

“It’s important to involve family and carers and to also help them to understand how to deactivate the device because often it may be a joint decision with the doctors to switch it off,” says Catherine.

This is especially true in an ageing population where more people may be suffering from multiple long-term conditions, including dementia.

“One of the unintended consequences of the success of cardiovascular medicine and surgery is that now we keep patients living much longer and you may have someone with severe heart failure who then loses mental capacity – so who takes that discussion [about deactivation] on board?” asks Dr Beattie.

As a nurse, Wendy, the driving force behind the DVD in which Carole stars, knows that broaching this subject isn’t easy. She tries to raise the subject as soon as possible after a patient has had a device implanted. “I say something simple like ‘you may not currently be thinking about the future but if you become old, frail or have a terminal illness, you may want the defib switched off, which is called deactivation – so you can have a natural, peaceful death’.

The DVD Wendy has helped to produce, called Deactivating ICDs in an emergency and end of life situation, is aimed at healthcare professionals. One of its goals is to debunk some of the common myths about deactivation. “Many patients thought that if you turned off their ICD they would die instantly,” she says.

That simply isn’t true. Turning off an ICD won’t hasten death but it will mean that a patient who is already dying won’t receive a shock if their heart is failing.

We have recently released a set of principles and practice in relation to ICD deactivation for end of life, also aimed at helping healthcare professionals to better explain the issue to their patients - see the box below.

ICD deactivation: some guidance

We have worked with Dr James Beattie to produce a discussion document that raises awareness of the issue of ICD deactivation and end of life, which is aimed at healthcare professionals. In it we suggest:

1 Discussion about ICD deactivation needs to be part of the planning consent.

2 A comprehensive assessment of the overall benefits and implications of ICD therapy should be undertaken based on a patient’s needs prior to implantation.

3 Shared decision-making needs to take place to enable informed consent before implantation.

4 There should be ongoing reviews of the appropriateness of maintaining the device.

5 The development of robust protocols for implementing ICD deactivation at a local level is essential.

Read our FAQs about ICD deactivation.

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