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18 Discontinuing pacemakers, ventricular assist devices, and implanted cardioverter-defibrillators in end-of-life care
The Case
Mr. K is a 59-year-old who was diagnosed with idiopathic ventricular tachycardia at age 50. He had an implantable cardioverter defibrillator (ICD) placed at that time. Within a month of placement, Mr. K experienced his first shock and described it as a ‘sledgehammer to my chest.’ He became afraid of further shocks and limited his activities in the hopes of avoiding them. The ICD was reprogrammed, his medications were readjusted and he underwent cognitive behavioral therapy to lessen his fears of the shocks. With these changes in place Mr. K was able to resume several activities. He now returns requesting that his ICD be turned off because he has been diagnosed with unresectable cancer. He had undergone some palliative chemotherapy but has decided that he does not want more chemotherapy because it makes him so ill that he cannot focus on getting his affairs in order before he dies.
Are there ethical arguments for keeping the ICD activated?
Some practitioners will not disable any cardiac devices – pacemakers, ICDs or ventricular assist devices (VADs), citing several potential ethical arguments for leaving the device intact and functioning. One argument is that the device has become part of the patient’s physiology. It is a “biofixture” and to disable it is to interfere with the patient’s current physiologic functioning in a negative manner.1 Physicians should not be a part of actions that diminish patients’ health, because it would violate the principle of nonmaleficence or “do no harm.” A second argument is that disabling the device constitutes euthanasia in that without the device, the patient will have a cardiac event that is no longer readily reversible, as it would probably be were the device active. The physician who writes the order for disabling the device writes an order that is the potential cause of the patient’s death. A third argument is that disabling a cardiac assist device could be construed as physician-assisted suicide because the order to disable the device must be written by a physician in response to a patient request. What could such an order be but an agreement to help the patient to commit suicide?
In a recent survey of physicians and their attitudes towards device deactivation, 46% of respondents believed it was illegal or were unsure if it is illegal to disable a device. Once they were reassured that it is legal, 91% of the respondents indicated that they would be willing to discuss disabling cardiac devices under certain circumstances.2
Responses to arguments against disabling cardiac devices
The biofixture analysis is adapted from legal concepts and is not a fully analogous argument. Devices are inserted and removed from patients throughout their lifetimes. For example, intraocular lenses and artificial joints are implanted in patients and explanted if not functioning properly. The device does not contain the patient’s DNA or other attributes that identify it as uniquely specific to a particular patient. Further, disabling a cardiac device does not entail its removal, so the patient is not at risk for further surgery.
When it is argued that disabling a cardiac device will harm a patient, it is important to remember that harm assessments ought to come from the patient, particularly if the therapy has been ongoing. The physician must educate the patient about the potential benefits and burdens of disabling the device, but it is the patient who decides whether or not to accept the benefits and burdens. In this case the patient initially accepted the benefits and burdens of his ICD; however, as the patient’s life circumstances changed, those benefits no longer outweighed the burdens in his view.
The writing of an order to disable a device should not be viewed as euthanasia. In general, euthanasia is considered to be an act on the part of a healthcare provider that intentionally hastens the death of a patient. A physician may believe that the lack of countershock will inevitably hasten the death of the patient; however, this may also be an overestimate of the value of the ICD. Not all delivered shocks are appropriate, there are nonfatal arrhythmias, and death may occur from other causes. Also, disabling the device is merely the removal or forgoing of a therapy that is no longer requested by a patient rather than a further intervention that is designed to hasten the death of the patient.
Disabling a device is not physician-assisted suicide. The requests for disabling cardiac devices are generally made in the context of other life-limiting diseases where the benefit of a device that causes the heart to function while the rest of the body is failing is no longer acceptable. If a practitioner is uncertain about the mental health of a patient, it is reasonable to consult with a psychiatrist or psychologist.
The doctrine of “double effect” may help in analysis of this issue. (For more about Double Effect, refer to Chapter 15). If the intention of the physician is to relieve suffering that the device is causing, and the death itself is unintended, then disabling may be ethically permissible. It is important to remember that disabling the device does not inherently cause the death of the patient – there are patients who have devices implanted who have never been shocked. Alternatively, shocking a dying patient may unnecessarily prolong death and cause further discomfort.
The rationale for disabling the device are based on a fundamental notion of patient autonomy, informed by patient awareness and acceptance of the consequences of the choices made. This set of conditions is analogous to the withdrawal of other medical therapies such as ventilatory support or dialysis. A debate about disabling cardiac devices has arisen in part because these devices are relatively new, because they literally support the symbolic organ of life (the beating heart), and because true to the technological imperative, health care providers rush to support those with debilitating diseases with less thought to the limits and burdens of the technology.
Distinguishing characteristics of current cardiac devices
Each of the three types of currently used cardiac devices has different functions and a different mix of harms and benefits. These differences may impact the decision to disable the device. Each device may be disabled by simply “deprogramming,” or by battery pack disconnection.
Pacemakers
Pacemakers are the oldest of the devices, having been used since the early 1960s. There are risks with implantation. There can be infection, lead fractures, and inability to place the leads in a satisfactory manner with a resultant inability to pace. If the patient is able to have a pacer placed successfully, there appears to be minimal downside. It is a small device with little disfigurement of the patient and it performs its function without patient awareness. By maintaining an adequate cardiac rhythm, a pacemaker can help a patient to have a nearly normal life with few restrictions.
When a patient is dying, continued pacing may be seen as a burden. The pacing can be viewed as a mandatory continuation of one physiological system that is out of sync with the overall condition of the (dying) patient. But exactly what happens if a pacemaker is discontinued is of concern. A slower heart rate may cause congestive heart failure with shortness of breath, pulmonary edema, and an inability of the patient to enjoy the last days of life. These symptoms may be ameliorated with good palliative care. It might also be that the patient’s intrinsic rate is sufficient to maintain the limited activities of a bedridden, dying patient.
There are few stories available for review of what happens to patients when their pacemakers are disabled and so it is hard to predict what will happen. If the device is disabled within the context of multiple lethal diseases, there is little reason to fix blame for all of the patient discomfort on that action alone. It is important to remember that good palliative care can ameliorate the symptoms that the patient might experience during the dying process when the pacer is disabled. If the patient is completely pacer dependent – i.e., there is no underlying cardiac rhythm – death will likely occur shortly after the pacer is disabled. Obviously, specific plans should be made regarding do-not-resuscitate orders prior to disabling such a device.
Implantable cardioverter defibrillator (ICD)
Today, pacemaker technology is usually enveloped in the ICD so that one device functions as a pacemaker or ICD or both. This section will focus on the ICD function of the device. The initial placement of the device has the risks of inability to place, infection, and lead fracture. Recovery time from the placement is short, if the device is functioning well. It is a relatively small device with minimal disfigurement. However, once the ICD is in place and functioning, it may not be as benign as a simple pacemaker. Patients are frequently aware of the firing of the device and describe the shock as traumatic. These experiences create anxiety, depression, and panic states in some patients. They may self-impose activity limitations in the hope of avoiding being shocked. Thus, patients may have a greater interest in ICD removal than with simple pacemakers in which awareness of function is not an issue. If there are other disease states that are not reversible or controllable, the patient may decide that the burden of ICD shocks added to the incurable illness creates a quality of life that is unbearable and ask for disabling of the device.
Related posts:
Informed consent and the pediatric patient
The use of ethics consultation regarding consent and refusal
Ethical considerations in interventional pain management
Conflicts of interest in research funding
Physician conscientious objection in anesthesiology practice
Opioid therapy in addicted patients: background and perspective from the US
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