Results from these qualitative interviews with clinicians from a variety of specialties in both academic and private practice settings demonstrate that although these physicians believe conversations about deactivating ICDs should happen as part of the other advance care planning discussions for patients with serious illness, this rarely occurs. Some of the reasons why these conversations do not occur seem to be similar to the larger literature on advance care planning (i.e., those discussions where patients’ and their families’ goals of care are elicited and treatment plans adjusted to be in line with those goals22
), whereas others are unique to the ICD.
Many physicians in this study felt that because of a lack of time, they did not have a relationship with patients that would facilitate discussions about ICD deactivation—a finding other investigators have noted when examining barriers to advance care planning for patients with a variety of illnesses.23,24
Clinicians also noted that they did not “do discussions well” and were concerned that they would either take away patients’ hope or raise concerns about death; these are all concepts that have been found in other studies exploring barriers to advance care planning.23–26
Physicians also discussed general concerns with withdrawing therapies. Whereas discussion about the withholding or withdrawing treatments are considered the same by ethicists,27
it is known that physicians draw a distinction between these 2 treatments.28–30
There were issues relating to ICD deactivation, however, that were unique to the nature of the device itself. The majority of patients who have hemodialysis or ventilators withdrawn (the two most frequently studied technologies that are commonly withdrawn,31–37
) will often die within hours to weeks. The interval between ICD deactivation and patient death may be much longer given the unpredictable nature of malignant arrhythmias. Because of this distinction between ICDs and other advanced technologies, clinicians who engage in conversations about deactivation are somehow insulated from feeling that they are “killing the person.” Both hemodialysis and ventilator support also require large machinery, which creates a physical reminder that advanced technologies are being used to sustain life. In addition, these interventions have a large impact on the patient’s overall quality of life. Because the ICD is so small and innocuous, its size does not create a daily interference with a patient’s quality of life; therefore, discussions about their management at the end of life may not seem so pressing to clinicians. It would seem as though the nature of the device makes it less noticeable, but its small physical size seems to be not correlated to the large ethical dilemma it creates for physicians.
It is noteworthy that despite the difficulties added by the unique nature of the ICD, every clinician who participated in this study (whether in the role of primary care provider or specialist) felt they had a role in these conversations. Traditionally, one might assume that the job of having “difficult conversations” is that of the primary care provider, but there were no participants who expressed that they should be excluded from these conversations based on their medical subspecialty.
These data make it clear that clinicians believe they should engage in conversations about ICD deactivation, but the difficulty lies in creating effective future interventions to make these conversations easier. These conversations are made even more complex by the fact that in qualitative studies with patients (reported separately in this issue of the Journal) we found that relatively healthy community-dwelling outpatients with ICDs may not wish to engage in conversations regarding ICD deactivation. Although educational interventions have shown significant improvements in facilitating communication between clinicians and patients with advanced illness,38–40
the data reported here demonstrate that there are unique barriers to communication about ICD deactivation, which might benefit from future interventions specifically designed for conversations about the management of these devices. These tools will need to take into account patients’ reluctance to engage in these conversations, as well as the unique nature of the ICD and how this might hinder conversation.
As the number of implanted devices continues to expand in the future because of expanding eligibility and reimbursement, these conversations will be encountered with more frequency. Only by assuring that conversations about ICD deactivation routinely occur for all patients with advanced illness can we assure that patients and their families have the highest quality of care near the end of life.