-
PDF
- Split View
-
Views
-
Cite
Cite
Germanas Marinskis, Lieselot van Erven, on behalf of the EHRA Scientific Initiatives Committee, Deactivation of implanted cardioverter-defibrillators at the end of life: results of the EHRA survey, EP Europace, Volume 12, Issue 8, August 2010, Pages 1176–1177, https://doi.org/10.1093/europace/euq272
Close - Share Icon Share
Abstract
This survey assesses the current opinion on and practice of the management of terminally ill patients with implanted cardioverter-defibrillators (ICDs) in 47 large European centres. The principal findings of this survey were that most physicians (62%) from European centres who responded to this survey would consider deactivating ICDs at the patient's endoflife. In these circumstances, multiple appropriate ICD shocks may be an indication to deactivate an ICD (83% positive answers). Remote deactivation by a remote monitoring system is not considered appropriate by 68%. Practices of deactivating procedure differ and approach to standardized clinical scenarios is inhomogeneous. Patients are provided with surprisingly little information on the possibility of deactivation of ICDs since this subject is only actively discussed in 4% of centres.
Introduction
The number of implanted cardioverter-defibrillators (ICDs) is steadily rising because of newly accepted indications. However, many patients also have significant co-morbidities, and sometimes patients, their relatives, and clinicians face issues related to ICD functioning at the end-of-life, including shocks during the process of dying.
The purpose of this survey was to evaluate the current practices and opinions of clinicians regarding end-of-life ICD issues.
Results
Responses were received from 47 centres of the European Heart Rhythm Association's (EHRA) Research Network by answering the electronic survey published on the EHRA website in May 2010. There were 10 responding centres from Spain, 4 from Belgium, Denmark, Greece, and Germany, 3 from Sweden, 2 from Iceland, Italy, and UK, and from 12 countries with just one responding centre.
Of the respondents, 82% reported to be electrophysiologists, the remaining were general cardiologists.
Most centres were medium to large centres, with annual ICD implantation rates of >100 in 51% and 50–100 in 43% of the centres, whereas 6% were not involved in implantation procedures. As expected, most centres were involved in large numbers of follow-up visits (39% <500 per year; 61% >500 per year).
Most respondents have been involved in ICD activation (78% few cases, 11% often) vs. 11% never. Deactivation of ICDs in terminally ill patients was taken into consideration or viewed as reasonable by the large majority (62 and 29%, respectively) and routinely performed in 6%. Only one respondent considered ICD deactivation unethical or in contrary to religious beliefs.
Multiple appropriate ICD shocks in dying patients were considered as indication for ICD deactivation by 83%.
The general opinion on who should make the decision to deactivate the implanted device is thought to be the patient. However, if the patient is incompetent, this may be done by relatives (85%) or medical personnel (83%).
The option of ICD deactivation is not a subject that is routinely discussed. Only 4% of the respondents routinely bring up the subject at implant whereas for the large majority (85%) it is only discussed in specific cases during the follow-up. Information leaflets on care of terminally ill ICD patients are rarely present (4% of centres).
If it were possible and safe, remote deactivation would be considered by 32% and is rejected by 68%.
Guidelines from experts or an official position paper regarding ICD deactivation was considered helpful by the majority (75%).
Practically, deactivation is performed by far most frequently within the hospital or the outpatient clinic by medical staff. Only 2 in 47 respondents report ICDs to be deactivated by technical staff from the device manufacturing company and 5 in 47 report ICDs to be deactivated at the patient's home. For the question whether it is mandatory to remove the ICD from the body after a patient's death, 38% of respondents answered positive and 62% answered negative.
Six clinical scenarios (similar to that published in Kelley et al . 1 ) were presented ( Table 1 ) and as expected, the answers showed a diversion of opinions. In particular, the second presented case of a profoundly demented patient who was not approachable for medical evaluation appeared to divide the respondents. Generally, the less reversible and the less amenable to therapy, the higher the percentage willing to deactivate the ICD.
| Clinical case . | Yes . | No . | Don't know . |
|---|---|---|---|
| Man with severe chronic obstructive pulmonary disease who reports a poor quality of life | 17.0% (8) | 70.2% (33) | 12.8% (6) |
| Man with advanced dementia who is agitated by doctor's appointments and medical tests | 46.8% (22) | 31.9% (15) | 21.3% (10) |
| Woman with stage 4 ovarian cancer who requests palliative care | 76.6% (36) | 12.8% (6) | 10.6% (5) |
| Man with end-stage renal failure who refuses dialysis | 61.7% (29) | 23.4% (11) | 14.9% (7) |
| Woman with a massive stroke whose family has requested ventilator withdrawal | 89.4% (42) | 4.3% (2) | 6.4% (3) |
| Patient with end stage heart failure | 48.9% (23) | 27.7% (13) | 23.4% (11) |
| Clinical case . | Yes . | No . | Don't know . |
|---|---|---|---|
| Man with severe chronic obstructive pulmonary disease who reports a poor quality of life | 17.0% (8) | 70.2% (33) | 12.8% (6) |
| Man with advanced dementia who is agitated by doctor's appointments and medical tests | 46.8% (22) | 31.9% (15) | 21.3% (10) |
| Woman with stage 4 ovarian cancer who requests palliative care | 76.6% (36) | 12.8% (6) | 10.6% (5) |
| Man with end-stage renal failure who refuses dialysis | 61.7% (29) | 23.4% (11) | 14.9% (7) |
| Woman with a massive stroke whose family has requested ventilator withdrawal | 89.4% (42) | 4.3% (2) | 6.4% (3) |
| Patient with end stage heart failure | 48.9% (23) | 27.7% (13) | 23.4% (11) |
| Clinical case . | Yes . | No . | Don't know . |
|---|---|---|---|
| Man with severe chronic obstructive pulmonary disease who reports a poor quality of life | 17.0% (8) | 70.2% (33) | 12.8% (6) |
| Man with advanced dementia who is agitated by doctor's appointments and medical tests | 46.8% (22) | 31.9% (15) | 21.3% (10) |
| Woman with stage 4 ovarian cancer who requests palliative care | 76.6% (36) | 12.8% (6) | 10.6% (5) |
| Man with end-stage renal failure who refuses dialysis | 61.7% (29) | 23.4% (11) | 14.9% (7) |
| Woman with a massive stroke whose family has requested ventilator withdrawal | 89.4% (42) | 4.3% (2) | 6.4% (3) |
| Patient with end stage heart failure | 48.9% (23) | 27.7% (13) | 23.4% (11) |
| Clinical case . | Yes . | No . | Don't know . |
|---|---|---|---|
| Man with severe chronic obstructive pulmonary disease who reports a poor quality of life | 17.0% (8) | 70.2% (33) | 12.8% (6) |
| Man with advanced dementia who is agitated by doctor's appointments and medical tests | 46.8% (22) | 31.9% (15) | 21.3% (10) |
| Woman with stage 4 ovarian cancer who requests palliative care | 76.6% (36) | 12.8% (6) | 10.6% (5) |
| Man with end-stage renal failure who refuses dialysis | 61.7% (29) | 23.4% (11) | 14.9% (7) |
| Woman with a massive stroke whose family has requested ventilator withdrawal | 89.4% (42) | 4.3% (2) | 6.4% (3) |
| Patient with end stage heart failure | 48.9% (23) | 27.7% (13) | 23.4% (11) |
When asked to describe briefly the most problematic case leading to ICD deactivation, responses ranged from ‘in general no problem’ to difficult cases like a depressed patient asking to program her ICD off.
Discussion
Increasing numbers of ICD implants raises some clinical problems, one of which is dealing with devices in terminally ill patients. Since ICDs can deliver shocks in patients during the process of dying, thus bothering both the patient and the surrounding family and friends, 2 deactivation at this time may be considered. As published literature shows, the opinion regarding this is not homogeneous between specialists. 1 The results of the currently presented survey show that not only is a systematic approach to dying patients with ICDs absent in most countries, but also individual opinions regarding this sensitive issue differs significantly. There are papers published that give medical or legal advice on this issue, 3 , 4 but these are not a set of directives or procedures. Management of ICD patients at the endoflife depends on the patients, their relatives and physicians and may vary from country to country, and requires a patient-tailored approach despite the recommendations available.
What was especially striking in this survey is that the large majority of centres do not routinely provide their patients with information on this subject. The subject is generally brought up only on indication during follow-up. This shows that up to now, real-time practices on ICD deactivation differ from published recommendations. In this view, it would be interesting to repeat the survey after publication of new European recommendations.
Conclusions
The results of this survey show that most physicians (62%) from European centres who responded to this survey would discuss deactivating ICDs at the patient's end-of-life. In terminally ill patients receiving multiple appropriate ICD shocks, most physicians (83%) would deactivate the ICD. Remote deactivation by a remote monitoring system is not considered appropriate by 68%. Practices of deactivating procedure differ and approach to standardized clinical scenarios is inhomogeneous.
From this survey it is clear that, generally, the patient is provided with little information on the possibility of deactivation of the ICD at the endoflife, with only 4% of centres actively discussing the subject at implant and handing out information leaflets. This survey demonstrates that real-world care is very different from what is considered optimal care as far as ICD deactivation is concerned.
Conflict of interest: none declared.
