A new national study of hospice patients with implatable cardiac defibrillators (ICD) shows that while almost all hospices admit patients with these devices, only 20 percent of hospices had a question on their intake forms to identify patients with ICDs, and just 10 percent reported having a policy in place to discuss deactivation with patients and their families. On average, nearly 60 percent of patients did not have the shocking function of the ICD deactivated, resulting in pain and suffering for some patients. (See: Brief Communication: Management of Implantable Cardioverter-Defibrillators in Hospice: A Nationwide Survey. Nathan Goldstein, MD; Melissa Carlson, MBA, PhD; Elayne Livote, MPH, MS, MA; and Jean S. Kutner, MD, MSPH. Annals of Internal Medicine, March 2, 2010) The abstract is online at http://annals.org/content/152/5/296.abstract.
"Hospices are the foremost experts at dealing with the complex communication issues surrounding end-of-life discussions with patients and their families," said Nathan Goldstein, MD, assistant professor, Hertzberg Palliative Care Institute, Brookdale Department of Geriatrics and Palliative Medicine, Mount Sinai School of Medicine (www.mountsinai.org). "The fact that so few organizations have a policy about deactivation shows how complicated these conversations are."
The idea of turning off a cardiac implant or any other life-sustaining treatment is not easy for people to talk about. Many patients have had these devices for years and see them as a sign of stability. But the consequences of ignoring the issue aren't pleasant. An ICD is a device programmed to detect cardiac arrhythmias and shock the heart back into normal rhythm. ICDs are effective in preventing sudden cardiac death in patients with recurrent arrhythmias, but for patients in hospice care ICD shocks may cause physical and psychological distress for both patients and their caregivers. Patients report that receiving shocks from an ICD is comparable to being kicked or punched in the chest. Receiving ICD shocks has been associated with the development of adjustment disorders, depression, post-traumatic stress disorder, and panic disorder. Family caregivers who observe patients being shocked report feelings of fear, worry, and helplessness, and have been shown to have increased rates of depression and anxiety. For patients with terminal diseases an ICD may no longer prolong a life of acceptable quality, so at some point use of an ICD may become inconsistent with currents goals of care.
"These data indicate that developing a policy to address concerns surrounding ICDs can be highly beneficial in reducing emotional and physical discomfort for hospice patients and their families," said Dr. Goldstein, whose team developed a model policy for ICDs in hospices based on feedback they received from several facilities. The policy includes the necessity for staff to be educated on how ICDs work, identification of patients with ICDs at the time of evaluation and admission, an informed consent discussion with the patient and family about the benefits and burdens of the device, and how to handle the device in an emergency situation.