© Springer International Publishing Switzerland 2015
Barbara G. Jericho (ed.)Ethical Issues in Anesthesiology and Surgery10.1007/978-3-319-15949-2_1414. End-of-Life Issues: Management of Cardiac Implantable Electronic Devices
(1)
Center for Bioethics and Medical Humanities, Medical College of Wisconsin, 8701 Watertown Plank Road, Milwaukee, WI 53226, USA
Abstract
It has become increasingly acceptable for clinicians to disable cardiac devices placed in a patient if the patient so requests. When deactivation was first proposed, there was significant resistance. However, with the rise of patient autonomy, the recognition that quality of life is a patient judgment and the increased burdens of multiple chronic illnesses patients face as they live longer, device deactivation is a reasonable approach in end-of-life care. The three intracardiac devices (pacemaker, automatic implantable cardioverter defibrillator and ventricular assist device) have different benefits, burdens and deactivation trajectories. This chapter will review the commonalities and differences and suggest some talking points when there is a request for deactivation.
Keywords
End-of-LifeEthicsDeactivationPacemakersAutomatic Implantable Cardioverter DefibrillatorsVentricular Assist DevicesCase Presentation
A 65-year-old man has been admitted to the hospital for an exacerbation of his congestive heart failure for the sixth time in 18 months. Careful management by your intensive care unit (ICU) team has once again improved his condition and the plan is to discharge him from your ICU. He has an automatic implantable cardioverter defibrillator (AICD), which has shocked him on occasion, and he is grateful for the ‘extra’ opportunities for life the shocks have given. However he has also told you that he is more interested in palliative care, that he is tired of the ‘revolving door’ of his disease process. He notes that time out of the hospital is becoming shorter and although he is not fully aware of the passage of time while in the ICU, his family tells him that the time it takes for him to improve is becoming longer. You offer to have a discussion with him about treatment limitations and suggest a palliative care consult in conjunction with the rest of his family. When the consultation occurs, he agrees to a do not resuscitate (DNR) bracelet but he and his family ask that his AICD remain active through one or two shocks, after which, if the shocks are not beneficial, it would be reasonable to deactivate the defibrillator. Is this an acceptable request? What else would you like to know? What would you like to tell the patient and family?
Introduction
Cardiac devices are becoming more ubiquitous. Current devices are the small, fairly benign pacemakers (PM), the small (and uncomfortable for some) automatic implantable cardioverter defibrillators, and the larger, obvious and life-changing ventricular assist devices (VAD). These devices were all introduced with the intent of helping patients live better lives by assisting the functioning of a failing heart, through the maintenance of appropriate rhythms (PMs and AICDs), rapid defibrillation (AICDs) or assisting circulation (VADs). Each of these devices has helped patients. However, as the end of life approaches, some patients and families view the device as a barrier to high quality end-of-life care. Patients and families will then ask for these devices to be deactivated as death nears.
Initially these requests were considered to be ill-advised, that placement of the device was a permanent, non-negotiable aspect of care. However, with increasing emphasis on patient participation in decision making and with increased understanding of the negative aspects of the devices, there has been a greater acceptance of the potential reasonableness of such requests. Each of these three devices has different functions and a different profile of interference in the patient’s life, so requests for deactivation create different responses in physicians who are being asked about deactivation.
It is important that the physician understand his or her own responses to such requests and the reasons for and against deactivation. With a clear foundation of personal views, a general response to such requests can be crafted that is then fine-tuned according to the individual request. In this chapter, the generic reasons for not honoring a deactivation request will be followed by a brief review of each device with a discussion of the concerns with specific device deactivation. Some suggestions for the deactivation process will be provided.
Reasons to Refuse Device Deactivation
There are arguments supporting the position that these devices should not be deactivated. Deactivation is done via electronic reprograming, thus there is no need to excise the device. Physicians may construe deactivation as worsening the patient’s health, which is not a goal of medicine. Patients and physicians may believe that a device deactivation request is really a disguised suicide attempt. Physicians assert that the written order for deactivation would be assisting in the suicide. If the order writing is not considered suicide assistance, then it is euthanasia. The written order will allow for the killing of the device-dependent patient. The Heart Rhythm Society (HRS) considered these concerns and in 2010 issued a consensus statement that explains why deactivation should not be construed as assisting suicide or euthanasia [1]. HRS acknowledged conscientious objection by physicians with the caveat that care of the patient should be transferred to a provider who is willing to honor the request.
Currently, emphasis is placed on patient-centered or shared decision making, which focuses on understanding the goals of the patient and designing a plan of care that is as respectful of those goals as is possible [2]. When patients are asked about how they would like to die, they most frequently describe a ‘low tech’ death – at home, surrounded by loved ones and being kept comfortable. Patients and families may believe the devices unnecessarily prolong cardiac function as the rest of the body is shutting down, thus extending the dying process beyond that which might otherwise be expected.
The HRS statement declares that decisional patients have the power to assess ongoing therapies particularly in light of their changing health status to determine the continued usefulness of the particular therapy. If the patient is not decisional, then information about the appropriateness of deactivation should be shared with the legally authorized representative (LAR) of the patient. If there is no LAR, then family members engaged in the care of the patient should be involved in end-of-life conversations. In this chapter, “surrogate” will be used to indicate LAR or engaged family members. When receiving a terminal diagnosis, the patient may decide that cardiac devices are no longer as beneficial as they once were. HRS analysis supporting deactivation focuses on the patient’s perception of device benefits and burdens in the context of the patient’s goals and values for end-of-life care.
Although the HRS consensus statement does not explicitly mention VADs, the overarching term used to describe PMs and AICDs is ‘cardiovascular implantable device,’ which easily includes VADs. Ethical analysis by Mueller et al. supporting VAD deactivation proceeds similarly to the HRS analysis [3]. Both focus on patient driven assessments of benefits and burdens and a legally supported distinction between killing and allowing to die.
Pacemakers
Although PMs are the oldest of the three cardiac devices, familiarity with the device has not created the most robust consensus about deactivation. PMs continue to create unease when physicians are asked about deactivation. Usually, the longer a medical intervention is used, the easier it becomes to consider its removal. For example, initial requests for ventilatory support removal were met with strong opposition. Now most clinicians are reasonably comfortable with such requests. This is also true of dialysis discontinuation as well as artificial nutrition and hydration, to a large extent. The fundamental issue that creates a negative response to PM deactivation requests is that there is no apparent burden to its continued functioning. The PM is small, with no external wires and it paces in an unobtrusive manner. There is the potential for infection at the time of placement and lead fracture may occur, but rarely. Faulty pacing can be detected and the PM is easily reprogramed for better pacing. Battery lifetime is now about 10 years and battery replacement is usually an outpatient procedure.
Huddle et al. suggest that since there is no active role played by a physician once the PM is implanted, there can be no deactivation as this would be either assisting suicide or euthanasia [4]. This denies the ongoing care a patient receives after PM placement. If Huddle’s analysis is accepted, devices might return to short-term batteries, wherein a discussion could be had before each battery replacement. This would be similar to the placement of a timer on a ventilator as described by Kinzbrunner, thus requiring the active intervention Huddle deems necessary for deactivation [5]. Miller et al. have suggested that withdrawal of care is indeed killing, that we have created moral fictions to ease our discomfort with such actions, and that it is acceptable in some circumstances to do so [6].
Some surrogates are not aware that a PM can be deactivated; other surrogates may view the PM as an impediment to a natural death by prolonging the patient’s life in an inappropriate manner – the forced beating of a heart in a dying patient. This certainly is the contention put forth by Butler [7]. Physicians find it difficult to deactivate a device that seemingly has no downside – PMs do not limit the patient’s day-to-day activities, unlike an AICD or a VAD. The physician may believe that the PM only enhances cardiac function so that the patient can enjoy life. However, at the end of life, the PM may not be furthering opportunities for the enjoyment of life [8, 9]. To deny deactivation is to insist that neither the physician nor the patient can come to a different definition of health care as the patient’s health status changes.
Deactivation might not create any change in a dying patient’s health, which might be disappointing to the patient and surrogate if that is what was anticipated. An intrinsic rhythm of 40 may be sufficient for a bed bound patient. Or, there may be increasing symptoms once the PM is deactivated, such as fluid retention. The slow intrinsic rate may prevent sitting or standing easily. Of course if the patient had undergone ablation prior to the PM implantation, there might not be any rhythm and the non-paced heart will stop.
These varied outcomes should be discussed with the patient and surrogate before the PM is deactivated. Whitlock et al. reported that death subsequent to deactivation occurred within “a few hours” [10]. Mueller et al. also reported that the time to death was less than a day [11]. Contingent plans for supporting the patient after deactivation should be created since there are so few reports of what actually occurs. Palliative care consultation can provide assistance in symptom management once the PM is deactivated as well as support of the family. It is also important that all of the staff providing care for the patient understand the rationale for the deactivation. When considering PM deactivation, the conversation ought to include a discussion of a do not resuscitate order (DNR), which should be in place before the deactivation process occurs. Clear documentation of the reasons for the deactivation must be available for the person who will deactivate the PM, as well as the actual order for deactivation. This will mitigate concerns about the deactivation decision particularly if the request is made during one shift with one set of physicians and the actual deactivation does not transpire until another shift with another set of physicians.
Automatic Implantable Cardioverter Defibrillators
These devices became available in the 1980s and were approved by Medicare shortly thereafter. As indications for the AICD have expanded, an increasing number have been implanted every year. These devices are about the same size as a PM. In actuality, many devices are currently manufactured with the ability to function as both PM and AICD. The potential short-term complications are the same as for PM – infection and lead fracture. However, what became well known within cardiology circles shortly after AICDs were implanted is that some patients are completely aware of the shocks they receive [12]. At their most intense, the shocks are described as mule kicks or baseball bats to the chest. Cardiologists do alter medication regimes as well as reprogram the device so that the shocks are fewer and less uncomfortable, but these maneuvers do not always help the patient. Some patients will alter their lifestyle in the hope of fewer shocks. They may give up once pleasurable activities to avoid the traumatic shocks. Various counseling modalities have been useful in diminishing patient anxiety, however the counseling does not decrease the number of shocks [13]. It is important to remember that not all patients who have an AICD implanted are shocked and that not all patients who are shocked are bothered by the shocks.
As patients age and other chronic illnesses become more prominent, patients may decide that the AICD is no longer a welcome treatment modality. If there is a new life limiting diagnosis, patients may find the potential swift trajectory of death from a sudden cardiac arrhythmia more appealing than the long, slow downward trajectory of the newly diagnosed terminal illness. A device that initially was welcome as preventing sudden cardiac death is now unwelcome as preventing sudden cardiac death. On this basis and perhaps especially if the patients have experienced significant unpleasantness with the shocks, the patients may request deactivation of the AICD.
Paola et al. have suggested that the AICD is a biofixture, thus it has become part of the patient and ought not be deactivated [14]. However, Sulmasy counters that the location of the device is not in and of itself reason to eschew deactivation [15]. HRS also does not accept location of a device as a reason for deactivation refusal.
When patients are asked to describe a good death, many will talk about dying in one’s sleep, presumably of an arrhythmia. Thus, deactivating an AICD would now make this ‘good death’ more possible. Some clinicians believe that it is assisting suicide to deactivate the AICD. In the case of a terminal diagnosis and a decisional patient’s request for deactivation, this is not assisting suicide but demonstrating respect for patients. If the clinician has concerns about a patient’s abilities to make such a decision, it would be reasonable to ask for a psychiatric evaluation.
The conversation with a patient who is requesting AICD deactivation ought to include the information that deactivation does not guarantee a quick death from a fatal arrhythmia. There might be an arrhythmia that is not fatal – making the patient worse off but not dead. There may be no arrhythmia after the device is deactivated, especially if it fired infrequently or not at all. So, in spite of deactivation, the patient may experience the downhill decline he or she hoped to avoid. Thorough conversations with the patient and surrogate describing these possibilities before deactivation enable better decision making. Concerns can also be addressed with input from the palliative care team [16, 17]. DNR orders should also be clarified during the conversation about deactivation.
Ventricular Assist Devices
VADs were initially introduced as a bridge to heart transplantation but have become destination therapy for some patients. The implantation of a VAD is high-risk surgery, with significant complications – strokes, multisystem organ failure, bleeding and infections [18]. The need for post placement anticoagulation keeps the patient at risk for bleeding – gastrointestinal bleeding can be chronic in nature and a cerebral bleed can, of course, be devastating. External wires create an ongoing increased risk for infection. Management of the device requires support from a caregiver, family or friends as well as the advanced heart failure team.
Physicians may be reluctant to deactivate these devices for the same reasons as PMs and AICDs – deactivation is assisting suicide and perhaps even more so than AICDs, deactivation really will (within a short period of time) directly cause the death of the patient. This latter objection, the legal concept of proximate cause, may be a powerful influence in the consideration of VAD deactivation but it is balanced by the unwanted, unacceptable devastation some patients experience with placement.
Unlike the surgery for PM or AICD placement, VAD placement is major surgery with the above-mentioned complications that can permanently impair the patient. Deactivation has more rapidly become acceptable perhaps because physicians have learned from their experiences with PMs and AICDs. Physician concerns with assisting suicide and euthanasia are the same as with PMs and AICDs so the ethical and legal support framework provided by the HRS is applicable and valid. There are articles describing VAD deactivation [5, 19]. Although it is a small sample, Mueller et al. deactivated 20% of VADs placed in a nearly 6-year time frame [5]. None of the requests for deactivation were denied. Mueller et al. suggested that familiarity with deactivation of PMs and AICDs allayed concerns about the “permissibility of meeting these requests” [5]. A significant addition to their approach to VAD placement is that all the potential recipients now “receive consultation with a palliative medicine specialist who engages the patient in the process of advance care planning” [5]. The potential recipients are encouraged to voice their wishes should there be “device failure, catastrophic complications, development of a secondary comorbid condition, or ongoing poor quality of life” [5].
Related posts:
Pediatric Patients: Do Not Resuscitate Decisions
Perioperative Considerations of Do Not Resuscitate and Do Not Intubate Orders in Adult Patients
Informed Consent and the Disclosure of Surgeon Experience
Ethical Challenges in High-Risk Innovative Surgery
Professionalism in the Operating Room
Futility and the Care of the Perioperative Patient
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