Very Few Patients Address ICDs in Advance Care Planning
EXECUTIVE SUMMARY
Some clinicians and patients view deactivation of implantable cardiac devices (ICDs) as morally different from the withdrawal of other life-sustaining interventions, yet very few people address this in advance care planning. Ethicists can assist in the following:
- Prompt patients to consider what to do at end of life with implanted devices at the time of implant, and include this in advance care planning.
- Help to develop appropriate responses if clinicians are conscientious objectors.
- Ensure appropriate palliative care is provided during deactivation.
Very few people have thought about what to do with their ICDs in an end-of-life situation.
In one small study, only 15% of patients with an ICD or cardiac resynchronization therapy with defibrillator had thought about device deactivation if they were to develop a serious illness from which they were not expected to recover.1 Of the study participants, 53% had advance directives, but only one mentioned what to do with the device.
In Canada, nearly 200,000 patients have an implantable cardiac device (ICD).2 “In the U.S., that number is over a million. These numbers are growing with our aging population,” says Blair Henry, BSc, MTS, a senior ethicist at Sunnybrook Health Sciences Centre and assistant professor at the University of Toronto in Ontario.
“It is argued that the implantable device has become part of the patient, and should not be deactivated any more than a transplanted organ should be deactivated,” says James N. Kirkpatrick, MD, one of the study’s authors.
Ethical Justification
Significant minorities of clinicians and patients either believe deactivation to be unethical, or are unsure of the ethical and legal permissibility of deactivation.
“Deactivation of an implantable device has been equated with physician-assisted suicide,” says Kirkpatrick, adjunct assistant professor in the Department of Bioethics & Humanities at University of Washington Medical Center in Seattle. Kirkpatrick also is director of UW’s Echocardiography Laboratory.
A 2011 study found patients viewed deactivation of ICDs as morally different from withdrawal of other life-sustaining therapies such as mechanical ventilation and dialysis.3
“Despite persisting concerns about the morality and legality of deactivation of implanted cardiac devices, the bulk of the discourse in the ethics literature has maintained that the intra-body location of a device should not be a determining factor as to whether the device can be deactivated,” notes Kirkpatrick.
Deactivating a pacemaker isn’t necessarily any different than removing a patient from a ventilator or stopping dialysis. “These are all measures which artificially prolong life, and are not incorporated into the patient’s physiology or anatomy the way that a transplanted organ is,” says Kirkpatrick. The interventions generally are dependent on power sources to maintain function, can be externally manipulated, and have limited ability to respond to physiological alterations.
“Of course, in the future, they are likely to function more autonomously, with automatic adjustments to meet physiological changes, so these arguments will no longer apply,” adds Kirkpatrick.
As it stands now, the devices all have “off” switches — an indication they are intended to be deactivated should burdens outweigh benefits. “Perhaps that is part of the ethical justification,” says Kirkpatrick. “They are inherently and intentionally supportive. Ultimately, they are temporary — not intrinsically constitutive.”
Ethicists Are Needed
Ethicists can navigate difficult questions involving ICDs for clinicians, patients, and families — but only if they’re very familiar with how the devices function. “There may be significant misunderstandings about what the device is actually doing,” says Kirkpatrick.
For instance, unless a patient is experiencing active lethal arrhythmias, or is at risk for developing them in the setting of electrolyte disturbances, deactivating a defibrillator may have little or no effect. “Pacemaker deactivation may not lead to death, but simply reduced quality of life,” notes Kirkpatrick. For instance, a patient may become lightheaded and fatigued.
The informed consent process for turning off a device also needs to be considered, Henry says. “You need to know what will happen when a device is deactivated. What will be the new symptom burden for the patient when death is not imminent?”
Close collaboration with cardiologists and electrophysiologists is needed to understand how a deactivated device is likely to affect a particular patient. “Even patients with left ventricular assist devices may not die right away after deactivation, depending on how much residual native cardiac function they possess,” Kirkpatrick explains. Ethicists can assist with the following:
• Ensure proper palliative care is given during deactivation.
“There are specific issues pertaining to device patients,” notes Kirkpatrick.
For example, reduction in cardiac output following deactivation of a left ventricular assist device or cardiac resynchronization device may reduce the ability of the heart to circulate morphine and other palliative or sedative medications at the end of life. “These should be given and titrated well before the device is deactivated,” says Kirkpatrick.
• Prompt patients and clinicians to include devices in advance care planning.
Ideally, this should occur at the time the device is implanted. “We, and others, have shown that patients can have complicated relationships with their devices,” says Kirkpatrick. “Some evince anthropomorphic gratitude and see them as friends or family members and even give them names.”
Others see devices as a constant reminder of morbidity and mortality, and resent the intrusiveness. “This has important implications for advance care planning concerning devices,” says Kirkpatrick.
Decision-making related to ICDs includes the following scenarios, notes Henry:
- whether to have an ICD implanted;
- refusing a device exchange when the battery life is ending or in rare instances where the device itself fails;
- requests for deactivation for patients who are not otherwise dying, and also for terminally ill patients.1
• Proactively address appropriate responses to conscientious objectors.
A capable patient, or surrogate if the patient is incapable, has the right to decide to withhold and withdraw any and all therapies — including ICDs.4 “This fact does not detract from the distress frequently noted by physicians and front-line staff involved in this practice. Ongoing support and education is needed,” says Henry.
Kirkpatrick says that deactivating a device, especially in an awake patient, “can still feel like turning off an organ for clinicians and patients and families.”
Physicians were consistently less comfortable discussing cessation of pacemakers and ICDs compared to other life-sustaining therapies, found a 2010 study.5 Henry has found it helpful for clinicians to ask themselves, “Is the ICD prolonging life or prolonging death?” He adds, “The underlying disease — not the removal of an ICD — is the actual cause of death.”
The person who “turns off” the ICD is usually the nurse practitioner along with a technician from the cardiac electrophysiology clinic. In some cases, a representative from the ICD supplier is involved. “They will need support when undertaking this task, before and after deactivation,” says Henry.
Ethicists can help the institution to set expectations for the role of individuals working in a cardiac electrophysiology department, and address how to respond if a clinician conscientiously objects to deactivation of an ICD.
“It would never be acceptable to force a healthcare practitioner to act against their deeply held values,” says Henry. “But it may need to be a consideration for the future hiring practices of clinicians.”
REFERENCES
- Daeschler M, Verdino RJ, Kirkpatrick JN. The ethics of unilateral implantable cardioverter defibrillators and cardiac resynchronization therapy with defibrillator deactivation: patient perspectives. Europace 2016. pii: euw227. [Epub ahead of print]
- Healey S, Merchant R, Simpson C, et al. Canadian Cardiovascular Society/Canadian Anesthesiologists’ Society/Canadian Heart Rhythm Society joint position statement on the perioperative management of patients with implanted pacemakers, defibrillators, and neurostimulating devices. Canadian Journal of Cardiology 2012; 28(2):141–151.
- Kramer DB, Kesselheim AS, Salberg L, et al. Ethical and legal views regarding deactivation of cardiac implantable electrical devices in patients with hypertrophic cardiomyopathy. Am J Cardiol 2011; 107(7):1071-1075.
- Lampert R, Hayes DL, Annas GJ, et al. HRS expert consensus statement on the management of cardiovascular implantable electronic devices (CIEDs) in patients nearing end of life or requesting withdrawal of therapy. Heart Rhythm 2010; 7(7):1008-1026.
- Kramer DB, Kesselheim AS, Brock, DW, et al. Ethical and legal views of physicians regarding deactivation of cardiac implantable electrical devices: a quantitative assessment. Heart Rhythm 2010; (11):1537-1542.
SOURCES
- Blair Henry, BSc, MTS, Department of Family and Community Medicine, University of Toronto, Ontario, Canada. Phone: (416) 480-6100 ext. 7178. Email: [email protected].
- James N. Kirkpatrick, MD, Department of Bioethics & Humanities, University of Washington Medical Center, Seattle. Phone: (206) 598-4641. Fax: (206) 543-8584. Email: [email protected].
Some clinicians and patients view deactivation of implantable cardiac devices as morally different from the withdrawal of other life-sustaining interventions, yet very few people address this in advance care planning.
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