Nathan Goldstein, MD; Melissa Carlson, MBA, PhD; Elayne Livote, MPH, MS, MA; Jean S. Kutner, MD, MSPH
Communication about the deactivation of implantable cardioverter-defibrillators (ICDs) in patients near the end of life is rare.
To determine whether hospices are admitting patients with ICDs, whether such patients are receiving shocks, and how hospices manage ICDs.
Randomly selected hospice facilities.
900 hospices, 414 of which responded fully.
Frequency of admission of patients with ICDs, frequency with which patients received shocks, existence of ICD deactivation policies, and frequency of deactivation.
97% of hospices admitted patients with ICDs, and 58% reported that in the past year, a patient had been shocked. Only 10% of hospices had a policy that addressed deactivation. On average, 42% (95% CI, 37% to 48%) of patients with ICDs had the shocking function deactivated.
The study relied on the knowledge of hospice administrators.
Hospices are admitting patients with ICDs, and patients are being shocked at the end of life. Ensuring that hospices have policies in place to address deactivation may improve the care for patients with these devices. The authors provide a sample deactivation policy.
National Institute of Aging and National Institute of Nursing Research.
Patients with implantable cardioverter-defibrillators (ICDs) are being admitted to hospice care, and little is known about how these patients are managed.
The investigators surveyed a nationally representative sample of 900 hospices, of which 414 responded fully. Of these, 97% admitted patients with ICDs and 58% reported that at least 1 patient had been shocked in the past year. Forty-two percent of patients with ICDs had the shocking function deactivated.
Hospices should develop policies about ICD deactivation to avoid shocks at the end of life.
Leaving the defibrillation function on could potentially cause the patient to experience pain if the device delivers shocks near the end of life.
Turning off the shocking function means the device will not be able to provide all of the available methods of life-saving therapy in the event of a potentially fatal heart rhythm. Leaving the shocking function active does not guarantee, however, that the heart will return to a normal pattern of beating after an arrhythmia.
Turning off the ICD will not cause death.
Turning off the ICD will not be painful, nor will a patient's death be more painful if it is turned off.
Decisions about deactivating a pacemaker are often made separately from the decision to turn off a defibrillator, and they depend on the indication for the pacemaker and the patient's underlying intrinsic cardiac rhythm. Both are justifiable on ethical grounds, however, depending on the patient's overall goals of care. Deactivating a pacemaker may result in changes in a patient's symptoms. Consultation with a cardiologist or electrophysiologist before deactivation is often advisable to ensure that appropriate treatments are readily available if the pacemaker is deactivated.
The patient's cardiologist or electrophysiologist or a member of his or her team will be contacted to come to the patient's place of residence to reprogram the device.
A member of the hospice team with special training in the deactivation of ICDs will arrange to borrow the equipment (similar to a small laptop computer) from the cardiologist or electrophysiologist and bring it to the patient's place of residence to reprogram the device. Equipment may be manufacturer-specific, so this team member must know which manufacturer made the patient's ICD.
A representative from the device manufacturer, after appropriate consultation with the hospice medical director or the patient's cardiologist or electrophysiologist, will come to the patient's place of residence to reprogram the ICD.
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Douglas R Cook
March 6, 2010
After reading the McLellan editorial, I did some further research on the man who holds the Deputy Director position with the Obama White House Office of National Drug Control Policy. We knew at the start that he held a PhD and not a medical degree, so we could judge the comments from his expertise in addiction studies and not from what's medically best for the body hit with the stress burden of pain. But I am more than a little disturbed that his full title was not disclosed at the time of the editorial's first printing. Mr. McLellan's full title is "Deputy Director for DEMAND REDUCTION." I believe that puts a much different spin on his opinions when it becomes known that his very job is to reduce the amount of users of opioids nationally. I hold to this philosophy as a caregiver for my wife who suffers from unrelenting pain when opioid treatment is not available to her: Pain MEDICINE is for Pain PATIENTS, just as Insulin is for Diabetics. If there is to be any reduction in demand, make it come from any other area but the one for which it was made.
Duke University Medical Center
March 12, 2010
Complexities of Defibrillator Deactivation
We strongly agree with the authors' conclusions that hospices may improve quality of care if they routinely identify patients with implantable defibrillators (ICDs) and to address ICD deactivation. In our own hospital-based heart failure cardiology and palliative care practices, we always address ICD deactivation prior to discharging patients to hospice care. However, given the complexity and difficulty of decision- making for families and caregivers during transitions in care, we have observed the occasional patient who is not ready to deactivate their ICD at time of hospital discharge. We appreciate that hospices do accept patients with functioning ICDs with the presumed goal of addressing deactivation after enrollment in hospice. We would like to highlight the study limitation noted by the authors that this study does not directly address patient-level preferences about ICD inactivation. Goldstein et al have reported in a small study that ICD recipients have not discussed ICD deactivation and are unaware that deactivation is an option(1). In our experience, we also have observed that most patients are not made aware of the possible future burden of the ICD at the time of device implantation. We have occasionally noticed a paradox in which patients, despite preferring palliative care or hospice, remain unwilling to undergo deactivation of their ICDs. Furthermore, it is possible that hospices nurses are appropriately querying hospice patients about their preferences for ICD deactivation, irrespective of the presence of a hospice ICD deactivation policy. Further, we want to make note that the median hospice length of stay in a large sample of Medicare heart failure patients was reported at only 17 days with nearly 1/3 of patients staying less than 8 days(2. Thus, a short enrollment in hospice at end of life may be an additional barrier to establishment of highest quality conversations between cardiac patients and hospice care providers. Finally, clinicians need to be aware that, unlike cancer patients, 19% of HF patients are discharged from hospice and nearly 1 in 4 patients survive more than 180 days after hospice enrollment. Thus, admission to hospice care is not a certain indication of terminal HF, which adds to the complexity of prognostication and decision-making with this disease.
1. Bain, K. T., T. L. Maxwell, et al. (2009). "Hospice use among patients with heart failure." American Heart Journal 158(1): 118-125.
2. Goldstein, N., D. Mehta, et al. (2008). "That's Like an Act of Suicide" Patients' Attitudes Toward Deactivation of Implantable Defibrillators." Journal of General Internal Medicine 23(0): 7-12.
Nathan E Goldstein
Mount Sinai School of Medicine
April 16, 2010
Re:Complexities of Defibrillator Deactivation
We appreciate the authors' thoughtful response to our article. The goal of our work has always been to encourage patient-clinician communication about ICD deactivation in order to assure that patients and families can make informed choices that are consistent with their values and desires for care. As such, we do not advocate that all patients must have their devices deactivated and encourage physicians to respect patient autonomy when it comes to the management of the ICD even if, in the clinician's mind, the patient's decision appears to be counter-intuitive. The authors' comments about patients not always deciding to deactivate their ICD are in line with our clinical experiences and previously published data. Specifically, in our publication in the Annals of Internal Medicine several years ago, we found that only 21 (78%) of the 27 patients with an ICD who were reported to have had a conversation about device deactivation before death chose to deactivate the shocking function of the device(1). Patients often have had their defibrillator for several years, and may develop complex psychological relationships with respect to the device (2, 3). As one individual with an ICD stated in our focus group: "All I know is that it is there to help me and as long as I don't do wrong by it, it won't do wrong by shocking me (4)." As the authors' response illustrates when describing the percentage of heart failure patients who are discharged from hospice alive, the course of patients with end-stage heart disease can be particularly difficult to predict(5). The experience of heart failure patients underscores the importance of our recommendation that conversations should occur earlier in the course of a patient's illness so that the patient and their caregivers can begin discussions and determine if and when in the future the patient might want the device deactivated. These conversations will make decisions easier for the family should they find themselves in an emergency situation where the patient is being shocked repeatedly at the end of life(1). Only by enabling early and comprehensive communication about ICD management in the context of other discussions about the patient's overall goals of care can we assure the best quality of life and care for patients with advanced heart disease and their families.
1. Goldstein NE, Lampert R, Bradley EH, Lynn J, Krumholz HM. Management of Implantable Cardioverter Defibrillators in End-of-Life Care. Annals of Internal Medicine. 2004;141:835-838.
2. Dunbar SB. Psychosocial issues of patients with implantable cardioverter defibrillators. Am J Crit Care. 2005;14(4):294-303.
3. Sears SF, Conti J. Quality of Life and Psychological Functioning of ICD Patients. Heart. 2002;87:488-493.
4. Goldstein NE, Mehta D, Siddiqui S, et al. "That's like an act of suicide" patients' attitudes toward deactivation of implantable defibrillators. J Gen Intern Med. 2008;23 Suppl 1:7-12.
5. Lunney JR, Lynn J, Foley DJ, Lipson S, Guralnik JM. Patterns of functional decline at the end of life. JAMA. 2003;289(18):2387-92.
James M Beattie
NHS Heart Improvement Programme; National Council for Palliative Care; British Heart Foundation, UK
May 4, 2010
Re:Re:Complexities of Defibrillator Deactivation
We read with interest the article by Dr Goldstein and others describing the survey results of the experience and management of implantable cardioverter defibrillators (ICDs) by hospice organisations across the United States (1). This report is timely given the observed exponential growth in implant rates in recent years as guidelines for a range of device therapies have evolved. These issues are also relevant to the United Kingdom where hospices frequently admit patients whose devices remain active. Management dilemmas arise and often seem unanticipated. We have attempted to raise awareness of health professionals to the possible confounding influence of ICD therapy in advanced disease states (2) while the patient support group Arrhythmia Alliance have produced an information leaflet for recipients and their informal carers (www.heartrhythmcharity.org.uk/html/icds.html).
In 2008 a National End of Life Care Strategy was implemented in England. The long established Liverpool Care Pathway was proposed as one of the major elements of that strategy, facilitating a structured approach to care in the last few days of life, applicable particularly to those in hospital, care homes and hospices. The protocol for this health care instrument, currently in version #12, is founded on a central core, documenting a framework for end of life care provision, but the section on heart failure specifically addresses ICD deactivation (www.liv.ac.uk/mcpcil/liverpool-care-pathway/). It is clear that the practicalities of ICD deactivation remain challenging and demand close collaboration between cardiologists, electrophysiologists, cardiac nursing services and primary care physicians as well as hospice care providers. In our experience device industry representatives are often uncomfortable in undertaking defibrillator deactivation and such delegation may raise concerns about clinical responsibility (3).
We favor a patient-centered multidisciplinary team approach to prospective care planning which should facilitate the development of a consensus on timely practical ICD management; this to better ensure that evolving goals of care are comprehensively reviewed and continue to be fulfilled. Balancing the benefits and burdens of such complex therapy can be difficult (4) and good clinical navigation is essential. The sample ICD deactivation policy outlined by the authors in this brief communication provides a useful template to promote improved care for hospice patients with these devices. Compiled as a synthesis of the information provided by the US survey respondents, the resulting policy document is largely generic and thus readily applicable on an international basis. We welcome this contribution to the literature on an increasingly encountered clinical scenario.
James M Beattie
Consultant Cardiologist / National Clinical Lead, NHS Heart Improvement Programme, Birmingham UK
Deputy Director of Policy Development, National Council for Palliative Care, London UK
Head of Nursing / Healthcare Professional Services, British Heart Foundation, London UK
1. Goldstein N, Carlson M, Livote E, Kutner JS. Brief communication: management of implantable cardioverter-defibrillators in hospice: a nationwide survey. Ann Intern Med 2010; 152: 296-299. [PMID: 20194235]
2. Beattie JM. Implantable cardioverter defibrillators in patients who are reaching the end of life. London. 2007. British Heart Foundation. (available at www.bsh.org.uk/portals/2/icd%20leaflet.pdf).
3. Mueller PS, Jenkins SM, Bramstedt KA, Hayes DL. Deactivating implanted cardiac devices in terminally ill patients: practices and attitudes. PACE 2008;31: 560-568. [PMID: 18439169]
4. Dorian P. Effective and efficient use of implantable defibrillators: sometimes it's over when it's over. CMAJ 2009; 180: 599-600. [PMID: 19289799]
Goldstein N, Carlson M, Livote E, Kutner JS. Brief Communication: Management of Implantable Cardioverter-Defibrillators in Hospice: A Nationwide Survey. Ann Intern Med. 2010;152:296–299. doi: 10.7326/0003-4819-152-5-201003020-00007
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Published: Ann Intern Med. 2010;152(5):296-299.
Cardiology, End-of-Life Care, Rhythm Disorders and Devices.
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