Implantable cardioverter defibrillators (ICDs) are used for a variety of indications, but in all cases, their function is the same—to deliver an electrical shock to the heart when they detect an erratic heart rhythm, known as a ventricular arrhythmia.
An ICD is surgically implanted, as the name implies, and while it can be a relief knowing that the device will act if your heart gets off track, like having an on-board insurance policy, the shocks can also be unsettling.
To help ICD patients live comfortably with their devices, the Ottawa Heart Institute offers an unprecedented level of support. Its ICD Support Group is rare in Canada, and the remote monitoring available in collaboration with the device manufacturer reduces the need for twice-yearly follow-up appointments and can provide early detection of potential problems.
Sharing the Experience in the ICD Support Group
The Ottawa Heart Institute is possibly unique in Canada in having a support group for patients with ICDs, according to its convenor, Bonnie Quinlan, advanced practice nurse for Cardiology. At most, she said, it’s one of only two or three.
The group, which meets monthly, covers a broad range of topics, from understanding atrial fibrillation, how an ICD works and heart failure, to the psychological aspects of having an ICD and stress management. Most important, though, said Quinlan, is the opportunity for patients to tell their ICD story, connect with others in the same situation and learn from them. Some participants have been there for several years and have a lot to contribute to newcomers, she added.
Lloyd Rockburn is one of the long-time participants, having been part of the group since 2012. He agrees with Quinlan that it’s the sharing that is so valuable. He called the group a “safety net” and said there is a comfort in sharing people’s ICD experiences.
“There’s an ease there,” he said, adding that the group provides support that participants may not have at home.
He also noted that, for many people, being told they need to get an ICD comes as a surprise, and while taking it in, it’s hard to concentrate on what the doctor is telling you. The support group is a place to take in the information they didn’t hear the first time.
Common topics that come up during ICD Support Group discussions include:
- The anxiety that can accompany an unexpected shock from the ICD.
- What the shock feels like: It’s been described by some people as like being kicked by a horse from the inside. Others describe it as a small thump inside the chest. Either way, Quinlan reassures group members, especially those who haven’t felt a shock, that the sensation is not a lasting pain. It’s just for an instant and then is gone.
- What to do if a patient experiences a shock: If they feel well, contact the Pacemaker/Defibrillator Clinic. If they have more than one shock or feel unwell, call 911
- Whether their partner will feel the shock if the ICD goes off during sex: They won’t.
For the most part, people adjust well, but there are exceptions, explained Quinlan. In general, younger people tend to worry more about having the ICD, and people with a lot of supports in their lives tend to adjust better. Those who need to make the decision to get an ICD before experiencing a heart attack or other cardiac event sometimes have a more difficult time accepting the device than those who get their ICD after, when it’s not so much a decision as a life-saving necessity.
Remote Monitoring to Improve Care
The Heart Institute recently hit the landmark of having more than 1,000 ICD patients enrol for remote monitoring of their devices. Remote monitoring has many benefits for the patient, including reduced clinic visits, early warning of problems and, possibly, earlier notification of dangerous heart rhythms or other changes in cardiac status.
ICD patients usually have to come to the Pacemaker/Defibrillator Clinic at least twice a year to have their device checked. The remote system monitors enrolled ICDs and automatically transfers data from the devices to the clinic. Not only does this improve response times, it eliminates the need for a routine trip to the hospital each year. This is an important convenience for patients who may live 100 km or farther away.
Set up takes about two minutes and then there’s nothing more to do, said clinic nurse Paul McLoughlin, one of eight nurses in the device clinic, who are together spearheading the introduction of the remote monitoring system. “It doesn’t entirely replace in-clinic visits,” he said. “It complements them.”
Patient Lloyd Rockburn remembers his first date for transmitting his information. “It was a miserable day, miserable temperature, all kinds of snow,” he recalled. “It was nice to know that it was all happening in the middle of the night. I didn’t have to go anywhere.”
While all patients benefit from not having to battle unpleasant weather or pay for parking, it’s patients from further away—remote areas, the far north, even snowbirds spending the winter in sunnier climes—who really feel the benefits most.
An added bonus is that, if the remote monitoring detects an issue, it will notify the clinic right away, allowing physicians to intervene before an anomaly becomes a problem, rather than waiting for a clinic visit to download six months of historical data.
McLoughlin recently completed a master’s thesis examining why a minority of patients choose not to use, the largely beneficial, remote monitoring system. He found there were three key reasons: losing the human contact when an appointment is replaced with remote monitoring; privacy concerns related to data being stored on US-based servers; and fear of technology. Research has also found that, when patients try remote monitoring, they like it. A full 98% stay with the system once they start.
The clinic would eventually like to see all patients offered remote monitoring. It doesn’t lessen the medical workload—physicians still have to analyze the data and anomalies must be assessed as they are reported—but it improves the patient experience.
“The reason for doing this is not primarily medical,” said electrophysiologist Calum Redpath, MD. “It’s patient-driven. We want all patients to be offered the chance to participate.”
For some, this will involve addressing their concerns about remote monitoring. For others, it will happen when they replace their older ICD (which typically lasts five to eight years) with a newer model that is compatible. But, as with the ICD Support Group, improving the patient experience helps people live more comfortably with their implanted device.