Role of the Support Group for Patients With ICDs

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EP LAB DIGEST. 2023;23(10):20-21.

In this interview, EP Lab Digest speaks with Ann Kirkness, RN, CNC, from Royal North Shore Hospital in Sydney, Australia, about her role as a cardiac nurse and coordinator of an implantable cardioverter-defibrillator (ICD) patient support group for over 20 years.

Can you tell us about your clinical background?

Currently, I am a clinical nurse consultant in cardiac rehabilitation at Royal North Shore Hospital in Sydney. I am originally from the United Kingdom and completed my training there. I then moved to South Africa, where I worked as a nurse in the intensive care and emergency departments. In 1997, my family and I immigrated to Australia. In the last 25 years, I found my niche in cardiology and cardiac rehabilitation. Part of my role in cardiac rehabilitation is supporting patients with ICDs. I have collaborated extensively over the years with Samuel Sears, Jr, PhD, from East Carolina University. He has been a great mentor to me, providing incredible support and resources from his extensive work in this area.

When was the ICD support group started at your institution?

The support group here began in 1998. At that time, the technology was still comparatively new and the number of ICD implants in Australia was still relatively small. The technology was also still evolving and the programming of these devices was not as advanced as it is today. This meant that patients were receiving quite a few shocks and we realized we were not providing the support these patients needed.

How often does the group meet?

We meet approximately 4 times per year. Our focus is to provide education and support. We start each session with different speakers covering a variety of topics relevant to patients with ICDs. Then, there is an opportunity for patients to meet, interact, and share their experiences. We also encourage ICD patients to attend cardiac rehabilitation, because while the support group offers them a chance to meet others in a similar situation and provides them with more specific education for their particular needs, most will benefit from lifestyle education programs, supervised exercise, and more regular support in those initial stages of recovery.

What can you tell us about the patient demographics in your group?

It is a diverse group. We see a wide age range, anywhere from 18 to 90 years of age. Typically, we see more males than females.

There is also a lot of diversity in each diagnosis—it is not “one size fits all.” What led these patients to receiving an ICD varies dramatically. Some patients may have a cardiomyopathy, an inherited arrhythmia, an electrical issue, or in some cases, the cause of the arrhythmia is unknown. However, they all have one thing in common, which is that they are at risk or have experienced a life-threatening arrhythmia.

We also see differences in each patient’s experience of living with an ICD and individual coping abilities. There are some patients who are more traumatized by their experience than others (eg, those patients who have experienced a cardiac arrest or ICD shock therapy). Other patients have received their ICD as a preventative measure because they are deemed to be at high risk for ventricular arrhythmias, but may not have received ICD therapy, so they may see the device as more of an insurance policy and not something to be fearful of.

So, it is a mixed group of people who attend, but they are all interested in receiving more information and support. Family members are encouraged to attend as they are an important part of the recovery process and often also need support.

A recent study showed that nearly one-third of patients with an implanted device to prevent sudden cardiac death experienced anxiety in the first year, while depression affected 1 in 5 of these patients. Why is it important that psychological assessment and therapy be integrated into the routine care of ICD patients?

When we consider the nature of their diagnosis and that they have had the ICD implanted because they are at risk of sudden cardiac death, it is no wonder that they experience a higher incidence of anxiety and depression. While there is no doubt that ICDs can provide life-saving therapy, an ICD shock is something that a lot of patients are fearful of and can contribute to increased levels of anxiety and depression. Education and support can certainly help allay some of these fears and provide reassurance that the device is there if they need it. It is also important to explain that many arrhythmias can be terminated with pacing therapy without the need for shock therapy.

Screening for anxiety and depression is vital at different stages of the recovery process. Initially, patients are often relieved that they are “okay” and that this technology is available to protect them. However, after they go home, they have time to reflect and sometimes begin to worry, especially if they eventually receive a shock. Emotional well-being and physical recovery go hand in hand, and it is important to encourage patients to seek additional help and provide options if they need further support. There are ups and downs, so routine psychological assessment and follow-up are very important.

What are the common concerns you hear from patients in the ICD support group? Describe some of the key psychological and physical challenges that ICD patients experience.

Common concerns are often centered around the fear of a shock, the unpredictability, lack of control, what it might feel like, and where it might happen. We have heard from patients who received a shock while in a public place express concern about the embarrassment and subsequent avoidance of certain activities that they feel may have triggered the shock. For example, if the event happened on public transport, they might rationalize that if they do not go there anymore, that maybe it will not happen again. It is important to help them challenge those unhelpful thoughts.

We can help to ameliorate the fear to a certain extent through education, developing a “shock plan,” and preparation, but also by explaining that not everyone who has an ICD will receive shock therapy, and if they do, it could be a lifesaving intervention. Research suggests that over a 5-year period, 20% may receive shock therapy, but conversely, 80% might not.

Older patients are typically more accepting of the ICD, perhaps since health issues often present with age. Younger patients have more concerns about body image, fear of scarring, and how it will look. Sexual intimacy is a topic that also needs to be addressed, and patients need to be reassured that if the device activates, it will not harm their partners.

Physical activity and exercise are also common concerns. Patients question if it is safe and what sort of exercise can be done. Physical activity is good for the heart, and cardiac rehab can play an important role in advising and supporting patients in their journey back to good health. These are topics we try to cover with the ICD Support Group through Q&As and panel discussions with experts presenting on a variety of topics. The aim is to initiate some of these discussions within the group and answer some of these frequently answered questions, but also allow them to support each other. Many are at different stages of recovery, so peer support can be very reassuring as newer ICD patients try to process what has happened, and in some cases, re-establish a “new normal.”

Time is a great healer. We reassure patients that as time moves on and they become used to living with the device, that most people can adapt and lead a good life, knowing they have a device that is protecting them.

How do you help patients cope? What are your recommendations for prioritizing emotional health?

The support group is one aspect. We also encourage patients to come to cardiac rehabilitation, which is optional but offers ongoing weekly follow-up and monitoring, including clinical and psychological assessment, while they are recovering. It also offers the opportunity for supervised exercise and further advice. Exercise is often a very positive intervention.

Part of our role in cardiac rehabilitation is also to educate patients about the importance of managing stress and anxiety. We have the option of referring patients to a psychologist in the community and getting their general practitioner involved to make sure patients have the necessary ongoing support.

I have found that it is sometimes difficult for patients to accept that they might need psychological counseling and how important it is to look after their emotional and physical health. In our cardiac rehabilitation program, we try to provide continuous positive reinforcement, focusing on what they can rather than what they cannot do. Exercise plays an important role in both physical and emotional wellness. We hope that by the time they complete the program, they feel like they are well on the road to recovery, with some practical advice and effective coping strategies in place to manage their health moving forward. Patients always have the option to contact us again if they need support.

Does the group also address end-of-life care considerations for patients with ICDs?

Absolutely, this is such an important topic and something that, according to guidelines in Australia, should ideally be part of informed consent prior to having the device implanted. While it is usually something that would be covered by the implanting doctor, it is something that we as nurses can also address with patients. It can be a difficult conversation to have, because on the one hand, we are telling patients that this device can save their life and improve their quality of life, but at the same time, we are also telling them that this device can be turned off.

I try to present it to patients by explaining that at end of life, we want them to know that should their circumstances change, they can choose whether to have the device turned off or to not to have the device replaced. Unfortunately, this does not always happen. Up to 20% of people may receive a shock in their last weeks or days of their life. So, when the time is right, it is important to consider such discussions to ensure patients and their families can experience a peaceful and dignified death.

Of course, there may be some occasions, such as with younger patients, where you may not necessarily feel comfortable or it may not be appropriate at that time to have this conversation. However, for many patients, it is helpful to discuss the pros and cons and to let them know that when it comes to the point when they perhaps might no longer want or need the device, they can talk to their doctor about options for deactivation. With the current complexities of health care and introduction of advanced technologies, it is likely that the need for such conversations will only increase.

Discuss the importance of education in overall patient care, including its impact on patient well-being.

I believe education is of paramount importance. We know that lack of knowledge or education is a risk factor for maladjustment. When patients receive good pre- and post-operative education and follow-up, they are better equipped to make any necessary adjustments, (emotional, physical and work related). It also helps to desensitize their fears and normalize some of their ensuing emotions. Patients should understand why they are having this device implanted, what therapies it can deliver, and what to do if they receive shock therapy, as well as the positive effects it can have on their quality of life and daily living.

In my experience, the patients who do not adjust as well are those who feel they have not been fully informed. Coping with issues such as driving can be very difficult for patients. An example of this might be if a patient has experienced a sudden cardiac arrest and subsequent implantation of an ICD, but they were not advised until after the surgery about potential driving restrictions. This can have a significant impact on not only their perceived quality of life, but on work and recreational activities as well. Patients often perceive they have lost their independence.

As with any medical condition, education and support helps patients and their families make the right decisions and improve their ability to adapt and prepare for the future.

Of note, we also run a support group for younger ICD recipients. This group focuses on some of the specific needs and questions that younger patients may have, such as exercise, work, genetic screening, options for in vitro fertilization, preimplantation genetic diagnosis, and screening. These are important considerations, especially for those patients with a genetic heart condition wishing to start a family.

In addition, there is a Young ICD Network page (“Young at Heart”) on Facebook for younger ICD recipients. Technology has certainly transformed how we can provide services. For example, we switched the support group to virtual sessions during the COVID-19 pandemic, and I think we had more patients connect via Zoom during this time. Many of these patients had never been able or wanted to attend face-to-face sessions.

Having an online support group option also means that we are widening the net and connecting with patients from all over Australia, including more remote areas. ICD patients in rural settings can often miss out on receiving this type of educational and emotional support because of distances and limited access to specific educational resources. It has also given us much wider access to a variety of speakers and experts in the field. Therefore, technology has provided many advantages. While face-to-face interaction cannot be replaced, having this option or a combination is helpful and likely the way of the future.

So, there are several different ways to deliver education and provide support. It is important to note that evidence suggests that it is not enough to have only one session. I have worked with a psychologist to evaluate the effects of a 90-minute intervention for ICD patients; the sessions were conducted by a psychologist and a clinician to see if outcomes improved. The findings suggested that “a single educational session delivered to recent ICD recipients is not sufficient to improve patients’ psychological adjustment,”¹ illustrating the importance of ongoing follow-up, education, and different options for support. Everyone’s needs are different, and we all cope and respond in different ways. Recovery is a journey, and to quote Dr Sears, who recently presented via Zoom at one of our ICD Support groups, the recovery process is a “marathon rather than sprint.”

Is there anything else you would like to add?

The ICD is an amazing technology that has undoubtably saved many lives. It does, however, present some unique challenges, and as health care professionals, we should be mindful of this. We need to make sure that patients are well informed and able to access the right support. Knowledge is power, so an understanding of essential elements of their condition and treatment, together with a shock plan, is vital. A lot of time is often spent telling patients what the limitations are. When I am talking to patients, I try to focus on the positives and on what they “can do.” I have had many patients tell me that following their experience, they ultimately developed a different outlook on life, their priorities changed, and they re-established what was important in life. It is a privilege to work with these patients and their families and to learn from them. They give so much back and are willing to help and support one another. 

Reference

1. Edelman S, Lemon J, Kirkness A. Educational intervention for patients with automatic implantable cardioverter defibrillators. Aust J Adv Nurs. 2007;24(3):26-32.