Goals and Vision of the Program

Life after cardiac arrest is like “walking around without a net.”¹
Despite improved survivability,² cardiac arrest (CA) survivors face significant “extracardiac” sequelae (neurological, psychiatric, functional) secondary to lack of blood flow to the brain.³ More so, survivors and their caregivers are seemingly unaware that they will be confronted with these issues post-discharge, which seems to be a limitation of current care paradigms. The vision of this endeavor is to provide a “one-stop shop” that offers comprehensive, multidisciplinary, well-coordinated care for CA survivors.

Services include:

1. Education for patients and caregivers about CA during inpatient and outpatient consultations, and how a heart condition can affect the brain
2. Early screening and detailed, serial cognitive evaluations
3. Early screening and detailed psychiatric evaluation, treatment and monitoring by an expert neuropsychiatrist
4. Evaluation and treatment of common neurological complications after CA, such as cognitive deficits, memory impairment, psychiatric disorders, movement disorders and seizures, through the use of:
   1. Neuroimaging
   2. Appropriating referral services (i.e., occupational therapy, memory clinics, psychotherapists)
   3. Initiating or maintaining medications for spasticity, hypoxia induced Parkinson’s and other movement disorders
   4. Adjustment of epilepsy medications with outpatient EEG
5. Pastoral services that help patients with coping strategies, forming post-survivorship meaning and providing further emotional support

Additionally, we prospectively collect clinical data from all our survivors to help us further define the problem of “post-CA survivorship.” The ultimate goal of this program is to potentiate the greatest possible quality of life for CA survivors and their caregivers. This is in line with the American Heart Association 2020 Impact goal of promoting health rather than solely treating disease.

Local Challenges in Implementation

‘‘I wish I had known what to expect … how common it is … that it’s not the same as a heart attack’’⁵

1. Lack of education and awareness for the need to attend a neurological clinic for a heart condition – It was initially challenging for survivors, caregivers and healthcare providers to accept us as part of their care team. To increase awareness, we met with several stakeholders including cardiologists, ICU nurses, patent care directors from the cardiac and medicine step-down floors, and advanced practice providers, who are typically involved in hospital discharge of CA survivors.
2. Organizing a multidisciplinary clinic is complex – Working around the clinic demands and schedules of specialists from various backgrounds is an arduous task. To create an efficient system and optimize survivors and clinic team members’ time, the screening tools were administered first by the coordinator, following with each survivor being seen by all other team members as a group. This helped in reducing survivors’ frustration of repeating their stories and avoiding redundancy, allowing better communication and case-conceptualization for later discussion.
3. Challenges with no-shows – Survivors may suffer from either memory impairments and/or exhibit posttraumatic stress or depressive symptoms of avoidance or anhedonia, all of which pose a challenge for scheduling coordination. As a result, we began identifying each patient’s primary caregiver, who would be active in their appointment keeping, to serve as a liaison for later follow-up scheduling.

Design of the Initiative

Together, the NeuroCardiac Clinic team creates an individualized care plan tailored to each patient’s unique needs. Our team consists of the following members:

• Neurocritical care: This member is involved in the acute care of some of these survivors from hospital admittance through inpatient recovery and discharge, and will continue the overall coordination of their care in the NeuroCardiac Clinic. When appropriate, this member also fosters relationships with families, patients, their cardiologists, and brings other relevant resources such as cognitive neuroscience, rehabilitation and regeneration medicine, behavioral medicine and psychiatry.
• Neuropsychiatry: This member was dual trained as both a neurologist and a psychiatrist, with a subspecialization in neurophysiology and epilepsy disorders.
• Neuropsychology: This member is a board-certified neuropsychologist with expertise in brain injury assessment and rehabilitation for a broad range of medical diagnoses. This member serves as a research consultant and supervises the administration, scoring and interpretation of the neuropsychological results.
• Clinical research coordinator: This member has master’s level training in clinical psychology and is involved in screening, enrollment and educating patients/caregivers with basic information about the NeuroCardiac Clinic and post-CA survivorship at the time of hospital discharge. This member serves as the contact person for patients and caregivers, and administers neuropsychological assessments and screening tools for psychiatric disorders.
• Pastoral care: This member is a multi-faith chaplain from the hospital’s Department of Pastoral Care who offers on-site emotional and spiritual support to all patients and family members attending clinic appointments. The chaplain helps facilitate resilience and coping skills, operating through the lens of ambiguous loss, which includes finding the meaning of experiences and re-framing expectations.

Additionally, we work very closely with cardiologists to create a well-coordinated plan for each individual survivor.

Implementation of the Initiative

The initiative was implemented to capture all patients admitted to any of the 99 hospital ICU beds with CA as the admitting diagnosis. Through daily ICU screening, potential patients were identified using diagnostic codes and cooling consults sent to the neurological ICU team. To ensure data-collection process, surrogates of all survivors and non-survivors are consented and rapport is established. For survivors with sufficient mental status to engage in an in-person interview, the coordinator administers cognitive and psychological screening assessments and provides basic education, as discussed above, 24 hours prior to hospital discharge. The education provided is meant to promote awareness and to prevent negative surprises for patients if they experience any of the extracardiac symptoms (i.e., cognitive, psychiatric, functional) unexpectantly.

For all survivors, the coordinator provides information about our NeuroCardiac Clinic, and if they show interest in the follow-up, scheduled appointments are entered into their discharge plan by the responsible physician and reinforced by the nurse while going over the clinic information sheet as part of their discharge papers. No later than one week, the patient’s nurse calls the patient and inquires about their appointments and again re-iterates the importance of our clinic.

We aim to conduct the first follow-up appointment at three months, and then at least two more at six and 12 months. When patients are approaching their follow-up visit date, the authorized caregivers are first called by the coordinator to re-establish rapport and remind them of their family member’s clinic appointment. They are then given a confirmation call by the clinic’s administrative staff one day prior to their appointment.

Once at clinic, the patients undergo repeat screening by the coordinator. All clinic team members together then see the patients, preferably with their caregiver. Caregivers are interviewed separately to understand the true nature of the deficits in cognitive, psychiatric and functional recovery. During the initial screening, if the neuropsychiatrist deems a patient suitable for an individual psychiatric diagnostic interview, she will see the patient individually after the group meeting.

Success of the Initiative

There were 34 patients with 106 visits (median: 2, IQR: 1-3 per patient) during the first year of the NeuroCardiac Clinic initiation. Twelve patients (35 percent) were diagnosed with a psychiatric disorder after evaluation by our psychiatrist. Ten (29 percent) patients received a brain MRI to define cognitive deficits and detecting secondary, delayed worsening after anoxic brain injury, including symptoms of Parkinson’s, movement disorders, spasticity and gait abnormalities. Three (9 percent) patients had an EEG performed to justify weaning medications. Eleven (32 percent) patients were sent for referrals to rehabilitation, psychotherapy, or detailed neuropsychological testing. Medications for persistent memory disorder, spasticity, depression, anxiety were either started or managed on eight (23.5 percent) patients.

Because we are still defining the problem of an in-depth exploration of the post-arrest experience, we have not conducted any systematic interventions per se. Instead, we define our successes thus far as normalizing patients’ post-arrest challenges as well as serving as a source of emotional and informational support.

Translation to Other Settings

A clinic of this format can be appropriate for any condition that serves as a striking surprise and leaves patients chronically debilitated (e.g., stroke, acute coronary syndromes, cancer, traumatic brain injury). Patients and their caregivers can largely benefit from emotional support from an integrative multi-disciplinary team.

Summary of the Experience and Future Directions

We have taken an important step in promoting education and awareness of the extracardiac symptoms cardiac arrest survivors may experience. As we continue to define the post-cardiac experience, we hope to develop novel interventions in collaboration with rehabilitation and regeneration, specialists in memory disorder, and behavioral medicine psychologists to improve clinical outcomes and quality of life in both survivors and their caregivers. Additionally, through continued documentation and research, we hope to continue obtain the attention of patients’ providers during the acute hospitalization so that they can address the extracardiac symptoms cardiac arrest survivors could experience.

With limited availability of treatment options for deficits like severe memory loss or executive functioning, expectation management, addressing reality and focusing on building resilience is the key. Achieving acceptable quality of life is the final goal.

Acknowledgements: We acknowledge the NeuroCardiac Comprehensive Care Clinic (N4C) staff: Jennifer Loftus (Clinic Operations), Jennifer Caro (Practice Manager), Kerri Natkiel (Revenue Cycle Director), Evie Sobczak (Research Assistant), and healthcare providers from all intensive medical and surgical intensive care units who contributed to the well-being of our survivors.