In re Quinlan
1976
Supreme Court of New Jersey
Withdraw
Ventilator
Saikewicz
1977
Massachusetts Superior Judicial Court
Withhold
Chemotherapy
In the matter of Shirley Dinnerstein
1978
Massachusetts Court of Appeals
Withhold
Cardiopulmonary Resuscitation
Spring
1980
Massachusetts Superior Judicial Court
Withdraw
Hemodialysis
Barber
1983
California Court of Appeals
Withdraw
Intravenous fluids
Bouvia
1985
California Court of Appeals
Both
Feeding tube
Cruzan vs Director, Missouri Department of Health
1990
US Supreme Court
Withdraw
Feeding tube
Schiavoa
2005
Florida Court of Appealsa
Withdraw
Feeding tube
Further, while some healthcare providers feel that deactivation of CIEDs is akin to euthanasia [14], US Supreme Court decisions have made a clear distinction between withdrawing life-sustaining treatments and euthanasia or assisted suicide [26]. Specifically, the courts have ruled that clinicians can legally (and should, from an ethical perspective) provide patients with whatever treatments are needed to alleviate suffering (such as morphine) even if the treatments might hasten death [27]. Granting a request to withdraw life-sustaining treatments from a patient who does not want them respects the right to be left alone and to die naturally of the underlying disease, which is legally protected by the right to privacy. This has been phrased as “a right to decide how to live the rest of one’s life”. Finally, these rights extend to patients who lack decision-making capacity through previously expressed statements (e.g., advance directives) and/or surrogate decision-makers [22, 23, 28].
There are healthcare providers for whom device deactivation is not consistent with their values [14, 29]. As described in the AMA Code of Medical Ethics, physicians (or other medical personnel) should not be compelled to carry out device deactivations if they view the procedure as inconsistent with their personal values. However, the clinician should not impose his or her values on or abandon the patient. Instead, the clinician and patient should work to achieve a mutually agreed-upon care plan. If such a plan cannot be achieved, then the primary clinician should involve a second clinician who is willing to co-manage the patient and provide legally permissible care and procedures including CIED deactivation [30].
Communication
A second barrier to more widespread adoption of ICD deactivation at end of life is the reluctance of physicians to discuss this option with patients. Some physicians do not feel comfortable deactivating an ICD [14, 15]. Others feel that device deactivation should be included in advanced care planning, but admit that they themselves rarely do so, finding CIED deactivation a more difficult topic than other advanced care discussions [31]. Physicians have reported lack of experience, lack of adequate rapport with patients, and time-constraints as barriers [32]. When they do discuss deactivation, it is often in the last days of a patient’s life, and after they have already received unwanted shocks [1, 5].
Timely and effective communication is imperative to informed consent and to prevent unwanted shocks at the end of life. Ideally discussion of deactivation as an option should start prior to implantation and continue throughout the illness course [9]. As illness progresses, goals of care and the level of burden acceptable to a patient may change [33, 34]. Suggestions for discussion of deactivation at different points in the illness trajectory are shown in Table 11.2.
Timing of conversation | Points to be covered | Helpful phrases to consider |
|---|---|---|
Prior to implantation | Clear discussion of the benefits and burdens of the device. | “It seems clear at this point that this device is in your best interest, but you should know at some point if you become very sick from your heart disease or another illness, the burden of the device may outweigh its benefit. While that point is hopefully a long way off, you should know that turning off your defibrillator is an option.” |
Brief discussion of potential future limitations or burdensome aspects of device therapy | ||
Encourage patients to have some form of advance directive | ||
Inform of option to deactivate in the future | ||
After an episode of increased or repeated firings from an ICD | Discussion of possible alternatives, including adjusting medications, adjusting device settings, and cardiac procedures to reduce future shocks | “I know that your device caused you some recent discomfort and that you were quite distressed. I want to work with you to see if we can adjust the settings to assure that the device continues to work in the appropriate manner. If we can’t get you to that point then we may want to consider turning it off altogether, but let’s try some adjustments first.” |
Progression of cardiac disease, including repeated hospitalizations for heart failure and/or arrhythmias | Re-evaluation of benefits and burdens of device | “It appears as though your heart disease is worsening. We should really talk about your thoughts and questions about your illness at this point and see if your goals have changed at all.” |
Assessment of functional status, quality of life, and symptoms | ||
Referral to palliative and supportive care services | ||
When patient/surrogate chooses a do not resuscitate ordera | Re-evaluation of benefits and burdens of device | “Now that we’ve established that you would not want resuscitation in the event your heart goes into an abnormal pattern of beating, we should reconsider the role of your device. In many ways it is also a form of resuscitation. Tell me your understanding of the device and let’s talk about how it fits into the larger goals for your medical care at this point.” |
Exploration of patient’s understanding of device and how he/she conceptualizes it with regards to external defibrillation | ||
Referral to palliative care or supportive services | ||
Patients at end of life | Re-evaluation of benefits and burdens of device | “I think at this point we need to reconsider your [device]. Given how advanced your disease is we need to discuss whether you want to keep it active. I know this may be upsetting to talk about, but can you tell me your thoughts at this point?” |
Discussion of option of deactivation addressed with all patients, though deactivation not required |
These goal-directed conversations should include discussions of quality of life, functional status, perceptions of dignity, and both current and potential future symptoms, as each of these elements can influence how patients set goals for their health care. These conversations should follow the model of “shared-decision making,” in which clinicians work together with patients and families to ensure that patients understand the benefits and burdens of a particular treatment and the potential outcomes that may occur as a result of its continuation or discontinuation [35]. Suggestions for communicating with patients and families regarding the role of the ICD in the context of the patient’s goals of care are shown in Table 11.3.
Table 11.3
Steps for communicating with patients and families about goals of care relating to CIEDs [9]
Sample phrases to use to begin conversation at each step | |
|---|---|
1. Determine what patients/families know about their illness | “What do you understand about your health and what is occurring in terms of your illness?” |
2. Determine what patients/families know about the role the device plays in their health both now and in the future | “What do you understand the role of the [cardiac device] to be in your health?” |
3. Determine what additional information patients/families want to know about their illness | “What else would you like to know about your illness or the role the [cardiac device] plays?” |
4. Correcting or clarify any misunderstandings about the current illness and possible outcomes, including the role of the device | “I think you have a pretty good understanding of what is happening in terms of your health, but there are a few things I would like to clarify with you.” |
5. Determining the patient/family’s overall goals of care and desired outcomes | “Given what we’ve discussed about your health and the potential likely outcomes of your illness, tell me what you want from your health care at this point.” |
NB: Sometimes patients and families may need more guidance; additional potential language might be: “At this point some patients tell me they want to live as long as possible, regardless of the outcome, whereas other patients tell me that the goal is to be comfortable for as long as possible while still being able to interact with family and friends. Do you have a sense of what you want at this point?” | |
6. Using the stated goals as a guide, work to tailor treatments, and in this case management of the cardiac device, to those goals. | Phrases to be used here depend on the goals set by the patient and family. |
For a patient who states that the desired goal is to live as comfortably as possible for whatever remaining time is left: “Given what you’ve said about assuring that you are as comfortable as possible it might make sense to deactivate the shocking function of your ICD. What do you think about that?” | |
OR | |
For a patient who wants all life-sustaining treatments to be continued, an appropriate response might be, “In that case, leaving the anti-arrhythmia function of the device active would be most in line with your goals. However, you should understand that if shocks occur they may cause discomfort for you and your family at the end of life. If desired, we can make a decision in the future about turning the device off. Tell me your thoughts about this.” |
An important role for the clinician is to provide factual and understandable information concerning the beneficial and adverse effects of continuing device therapy. Patients can then assess how the benefits and burdens of continued therapy fit with their ongoing healthcare goals. Data show that some patients with ICDs do not understand the role the device plays in their health, particularly in terms of care at the end of life [40]. An important time to discuss device deactivation is if a patient requests a “Do not resuscitate” (DNR) order, as often ICD deactivation will be concordant with current goals of care. However, there are a number of reasons why patients may wish to be “DNR”, and not all patients choosing DNR will wish to have their ICD deactivated. For example, for a patient who currently has an adequate quality of life but does not want to be intubated or admitted to intensive care, leaving the ICD active may be concordant with his goals, as the negative impact of ICD shocks may be acceptable given his current quality of life. It is also important to recognize that in patients for whom ICD deactivation appears to be most concordant with their goals, individual patients may still choose to leave the device on or to defer a decision on deactivation until they receive shocks.
It is vital for both the health care provider and patient to have an accurate understanding of the expected consequences of device deactivation. In many situations it will be difficult to predict a patient’s clinical course after deactivation. The timing and lethality of tachyarrhythmias is unpredictable, and elimination of shocking therapy is unlikely to result in immediate death unless the patient is experiencing incessant or increasingly frequent ventricular arrhythmias. Consultation with a clinical electrophysiologist may help clarify the clinical picture. The electrophysiologist can also ensure that the patient understands available options including changing programming to decrease likelihood of inappropriate shocks, or maintaining the anti-tachycardia pacing function (which is painless) but not the shock function.
Other members of the health care team also play a vital role in device deactivation, including nurses, social workers, and clergy. Routine psychiatric consultation is not needed for patients who are considering device deactivation but should be considered if there are concerns that a particular psychiatric disorder such as major depression or paranoid delusions may be interfering with the patient’s ability to make informed decisions.
While patients and families desire conversations about end-of-life care [36, 41, 42], studies of patient perceptions of ICD deactivation have shown varying results. Several surveys have shown that only a minority of ICD patients would want their device deactivated even in hypothetical settings of advanced symptoms such as constant dyspnea or daily shocks [43, 44], and in one focus-group study, patients did not even want to discuss the possibility of device deactivation, with one patient describing it as “like an act of suicide” [40]. However, in a more recent telephone survey of 95 ICD patients over 50 years of age, 70 % would choose deactivation in one or more scenarios describing functional, cognitive, and/or medical disabilities [45]. The difference in survey findings may reflect that the more recent survey incorporated a brief informational introduction about ICD function. Patients’ understanding of their ICDs has been shown in several studies to be limited [44, 45], and the fact that information provided beforehand may have impacted patients’ choices underscores the importance of comprehensive communication between physicians and patients. Two studies have evaluated retrospectively what patients actually chose when asked about deactivation when they were terminally ill. In one, among eight patients with terminal cancer and ICDs, six had discussed deactivation with their physicians, and all chose to keep their ICDs active [46]. However, Lewis described results of a pro-active program to identify progression to terminal illness in ICD patients, and all of those identified (N = 20) chose deactivation [37]. It is likely that the approach used by the healthcare provider may influence these decisions, and these studies highlight the importance of effective communication of the role of the ICD in the context of the patient’s overall goals of care.
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