This study expands the understanding of internal medicine physician practices, knowledge, and beliefs regarding PM and ICD deactivation. Though most physicians expressed confidence in discussing end-of-life care generally, some lack experience and comfort in managing cardiac devices specifically at the end-of-life, and have important gaps and inconsistencies in their legal and ethical knowledge pertaining to cessation of PM and ICD therapy. Notably, twenty-five to fifty percent of physicians considered deactivation of PMs and ICDs to be morally distinct from withdrawal of other life-sustaining therapies, and cessation of these devices was less frequently supported in clinical scenarios involving stable ambulatory patients with terminal illnesses.
Recent consensus guidelines have emphasized the importance of thoughtful, multi-disciplinary care of patients with PMs and ICDs, whose care frequently involves multiple specialties apart from cardiac electrophysiologists.(1
) There is a broad consensus in the health care field that patients with decision-making capacity have the right to request withdrawal of life-sustaining therapies and that physicians have an obligation to respect those wishes.(1
) Even if such actions lead to a patient's death, it is considered neither euthanasia nor assisted-suicide to respect a patient's right to refuse treatment or request treatment withdrawal. No medical therapy is mandatory, and there is no meaningful distinction in the law or among ethicists between different life-sustaining therapies such as mechanical ventilation, feeding tubes, dialysis, or cardiac devices.(1
The results of this study, however, demonstrate that some physicians do draw such boundaries. Physicians described wide experience and comfort with general management of end-of-life care and in withdrawing interventions such as mechanical ventilation and dialysis. Yet physicians had less far less experience participating in decisions to deactivate PMs and ICDs, and many were less comfortable discussing withdrawal of these therapies compared with other life-sustaining treatments.
Many physicians were unaware of different laws that may guide discontinuation of life-sustaining therapies both generally and specifically with regard to PMs and ICDs. Physicians characterized PM and ICD deactivation as physician-assisted suicide substantially more frequently than previously reported.(22
) This is particularly important as nearly all physicians correctly identified that physician-assisted suicide is illegal in Massachusetts (the location of the study center), implying that for these caregivers device deactivation would not be viewed as legal in their state, which is not the case. While these differences may reflect the greater expertise with cardiac devices in previous study populations, inevitably, physicians apart from electrophysiologists will encounter these clinical situations, and therefore will need to be familiar with the relevant laws guiding treatment options.
Notably, many physicians were less familiar with the legality of physician-assisted suicide in states other than Massachusetts. Though knowledge of local laws is undoubtedly more important for direct clinical care, the status of physician-assisted suicide nationally has led to broad public debate and legal challenges involving the U.S. Supreme Court. Given the prominence of end-of-life care in national discussions on health care reform, we consider it essential for physicians caring for patients receiving life-sustaining therapies to maintain a working understanding of the national context for these debates.
Importantly, many physicians viewed deactivation of PMs and ICDs as morally distinct from each other as well as from withdrawal of other life sustaining therapies. The specific reasons for these distinctions require further investigation, although our results suggest that variability in legal knowledge may contribute to the difference in perception. Additionally, the actual clinical experience of deactivating different therapies – including PMs and ICDs – varies in ways that may influence perceptions. Even patients who are “dependent” on mechanical ventilation, dialysis, vasopressors or pacemakers may not necessarily die immediately when those therapies are withdrawn, and this unpredictability (perhaps heightened with regard to devices that are less familiar) may contribute to moral unease. Similarly, while mechanical ventilation or the shocks from an ICD are obviously intrusive or painful, the burdens of pacing therapy from a patient's perspective may not be as readily apparent.
Our study has several limitations. Subjects included were drawn from a single tertiary care center, and the response rate for our survey was limited. Despite the anonymous nature of the survey, there is a potential for response bias with physicians reporting themselves as having an elevated sense of comfort with complex ethical situations.
These data suggest that efforts are required to better educate physicians regarding the legal and ethical underpinnings of life-sustaining therapy. Because less-experienced physicians are particularly uncomfortable with device deactivation, initiatives directed at medical students and residents may be particularly important. Adding cessation of PMs and ICDs alongside training on withdrawal of other therapies may provide a foundation for a broader experience with these modalities and allow non-electrophysiologists to engage patients and families in these discussions more effectively. At a minimum, health care facilities need clear policies regarding management of life-sustaining therapies, including cardiac devices, particularly in facilities where immediate electrophysiology consultation may not be available.(16
) Additionally, physicians caring for patients with PMs and ICDs should include discussion of these devices in conversations regarding goals of care, code status, and advance care planning.
All physicians should understand that patients with decision-making capacity have the right to refuse interventions, or to ask that therapies be withheld or withdrawn, regardless of the therapy in question or the consequences of stopping treatment.(10
) Though some may view PMs or ICDs as unique,(25
) there is no identifiable medical, legal, or ethical basis for this distinction.(1
) It is understood, however, that some physicians may object to device deactivation or moral or other grounds, even when provided with additional teaching and guidance.(25
) While these physicians cannot be forced to perform actions they deem unethical or otherwise unacceptable, they do have an obligation to provide an alternative means for patients to have their wishes respected.(1
) This may include transfer of care to another facility or a different provider within the same setting, but in all cases respects the rights of patients as well as providers. Given the multidisciplinary nature of caring for many patients with heart rhythm devices, cardiac electrophysiologists must work with clinicians from other specialties to ensure consistent, coordinated, and compassionate care for these patients.