With recent consensus guidelines regarding the withdrawal of implantable cardiac device therapy at the end of life, understanding the thinking of patients, legal professionals, and medical professionals regarding these issues remains key.16
Although several studies have focused on the attitudes of medical professionals regarding management of ICD therapy at the end of life, few have assessed attitudes regarding PMs, only 2 have looked at patient attitudes, and none have examined the attitudes of legal professionals.5-13,17,18
Understanding the attitudes of each group is important if we are to foster discussion between medical professionals and patients to ensure that all parties are equally satisfied and comfortable with the decisions made.
The withdrawal of ICD therapy at the end of life has become much more acceptable among medical professionals and is generally thought to be ethically permissible.5-8,19,20
However, the legality of this is not as clear, in part due to the lack of court cases focusing specifically on withdrawal of implantable cardiac device therapy. Furthermore, most legal cases have focused on withdrawal of life-sustaining therapies that are often more proximate to the end-of-life event (eg, intubation and mechanical ventilation, feeding tubes, and intravenous hydration) or visibly invasive (eg, hemodialysis). Cardiac device therapies, such as ICDs and PMs, are unique in that they dwell within the patient's body and, except in the case of an ICD shock, are often imperceptible to the patient.
The survey responses indicate a wide range of perceptions regarding the withdrawal of device therapy depending on the case (ie, which type of device is being considered) and the background of the respondent (ie, whether a patient, a legal professional, or a medical professional). Legal professionals were the most likely to think that device withdrawal was either legal or that the legal status was unclear, regardless of the type of device. It is interesting to note, however, that the opinions of medical professionals were the most wide-ranging, with a large majority perceiving the withdrawal of ICD therapy as legal and nearly a third perceiving the withdrawal of PM therapy in the PM-dependent patient as akin to physician-assisted suicide or euthanasia.
To understand the unique differences between withdrawal of a life-sustaining therapy and physician-assisted suicide, a distinction in terms is necessary. In physician-assisted suicide or euthanasia, the patient's life is terminated using a prescribed method by a clinician and self-administered by the patient or directly administered by the clinician.2,3,21-23
In withdrawing an unwanted therapy, the intent is not to hasten death but to withdraw a therapy that is perceived as a burden.22,24,25
In the context of ethical principles, regardless of the fact that a PM in a PM-dependent patient is a constitutive therapy without the continued operation of which the patient may not survive, it still represents an artificial life-sustaining treatment that the patient has the right to refuse at any time. Furthermore, established case law holds that patients have the right to refuse or request the withdrawal of any treatment and has repeatedly held that no single treatment holds unique moral status, although no single case has focused specifically on management of ICDs and PMs at the end of life. Thus, the management of ICDs and PMs still falls in line with prior legal cases regarding withdrawal of specific life-sustaining therapies.16
One contention that can be made is that the patient who is PM-dependent may wish for withdrawal of PM therapy for the primary purpose of hastening death. However, a PM also constitutes continuance of an artificial therapy that requires continued follow-up and can be associated with a variety of complications related to both sensing and provision of therapy. Thus, continued operation of a PM carries with it necessary continued follow-up that a patient may regard as burdensome. Furthermore, withdrawal of a PM, even if it may hasten the time of death, is not the same as providing a medication that would cause death in a similar fashion (ie, by slowing the heart rate to a degree that would cause death).
Although most respondents thought that PM therapy should be withdrawn in the PM-dependent patient, most also thought that acceding to the wish of the twin brother who requested that his own heart rate be slowed via the introduction of a therapy such as a pharmaceutical agent was not appropriate. Moreover, although some respondents agreed that the twin brother's request was justifiable on the basis of his clinical scenario, the overwhelming majority of respondents did not believe that the request was justifiable because the PM-dependent brother may have died faster as a result of the withdrawal of a life-sustaining therapy. It is interesting to note that significantly more legal professionals than medical professionals or patients (who tended to have similar responses) were likely to think that the patient's request was justifiable because of the clinical scenario (25%) or to agree with prescribing a medication that would lead to death (18%). However, legal professionals, medical professionals, and patients were all similar in their assessment that the reason for the request being justifiable had nothing to do with the ability of the twin brother to turn off his PM and perhaps die faster as a result of an inadequate heart rate or rhythm. This is consistent with prior decisions by the US Supreme Court in that the decision is not one of a “right to die” but rather of a “right to refuse unwanted treatments,” as in the Cruzan decision,2
and in that withholding or withdrawing treatments is not equivalent to physician-assisted death, as in the Vacco decision.21
Most respondents thought that all device therapy, whether an ICD, a PM in a non–PM-dependent patient, or a PM in a PM-dependent patient, should be withdrawn when it reflects the patient's wishes. This is despite the fact that few respondents thought that withdrawing any of these therapies was in the best interests of the patient. Respondents perceived a difference between ICDs and PMs in terms of the appropriateness of withdrawal, especially when taking into account PM dependence. These differences in perception were most marked among medical professionals and least among legal professionals, perhaps reflecting a difference in how life-sustaining therapies are perceived by medical vs legal professionals. Legal professionals tend to perceive all artificial life-sustaining therapies as equal regardless of temporal distinctions between the time of withdrawal and the time of death. Specifically, although withdrawal of ICD therapy in a patient with no episodes of ventricular tachyarrhythmia may not have any association with the time of death, withdrawal of a PM in an entirely PM-dependent patient may have a closer temporal relationship. The fact that the pacemaker still represents an artificial therapy, regardless of how constitutive, and that it is continuous does not alter the fact that it is an artificial therapy that a patient can refuse or request the withdrawal of, just as a patient can refuse or request the withdrawal of mechanical ventilation.
However, the medical professional will be the one involved in the withdrawal of any device therapy. Thus, the personal principles of the medical professional involved in the patient's care should be taken into account when the decision to withdraw therapy is made. Although most respondents agreed that device therapy should be withdrawn, more than one-third of medical professionals still perceive withdrawing PM therapy as akin to physician-assisted suicide or euthanasia. Although medical professionals are not compelled to carry out device deactivation in these cases, they should also inform the patient of their preference and not impose these beliefs on the patient.26-29
Most medical professionals and patients thought that it would be inappropriate to involve a different clinician who might be willing to provide the desired care; however, it is generally accepted that such an act is permissible when the primary clinician thinks that performing an act that is legally and/or ethically allowable goes against his or her personal beliefs.
Our study has the limitations typical of survey-based studies. First, only 12% of those surveyed responded. Thus, there may be some bias reflected among those who chose to respond. The differences in opinion among medical professionals, legal professionals, and patients may also reflect differences in the understanding of how these devices function. The attitudes of patients with devices may also reflect the attitudes of the medical professionals who care for them because their understanding of devices is often largely dependent on counseling by their clinicians. Furthermore, medical and legal professional respondents may represent a geographically heterogeneous population that may be affected by local differences in state law. Moreover, given that all patients were seen in a single institution, their responses may not be readily applicable to patients seen in other areas of the country.
In particular, only 8% of medical professionals responded to the survey, raising the question of whether these results can be generalized to all medical professionals. First, it was unclear in which geographic regions the respondents resided, and thus it is not necessarily clear if the respondents represented a geographically diverse population. Second, the respondents may have represented those with strong opinions related to end-of-life care and thus may not reflect the opinions of the average medical professional. However, our findings parallel those noted in recent Heart Rhythm Society expert consensus statements.16
Thus, the opinions of the respondents in our cohort at least appear to parallel those reached by expert consensus regarding the same issues.
Similarly, the legal professionals surveyed represented faculty from only 5 select law schools. Although these law schools represented a wide-ranging geography, the 17% response rate suggests the possibility that respondents may not have been equally distributed among all law schools. Furthermore, similar to medical professionals, the legal professionals who chose to respond may have already had strong opinions on the subject. Responses from legal professionals may also have been influenced by their specific area of legal interest (eg, constitutional law, malpractice law). Thus, it is unclear if the sum of their individual opinions may be extrapolated to a more general legal opinion. However, the lack of existing case law in this area means that, until such a case appears before a court, interpretations must be based on prior judicial decisions related to end-of-life care.