Tuesday, March 9, 2010
Implantable Cardiac Defibrillators- Hospice Role in Deactivation?
The Annals of Internal Medicine published a survey of hospices regarding their experience with patients who have implantable cardiac defibrillators. (See here for a brief explanation of these devices.)
The survey, conducted by Dr. Nathan Goldstein and colleagues, was directed at hospice administrators with instructions for that person to speak with the clinical staff. Of the 414 hospices that responded (a little less than half of those surveyed), 97% reported having patient(s) with ICDs, 58% reported having at least one patient who was shocked in the last year, and 42% of patients had the device deactivated.
Having a policy on ICD deactivation correlated with patients actually having the devices deactivated (73% of patients enrolled in hospices which had a policy vs. 38% in those without a policy; P < 0.001). The investigators include a sample hospice ICD deactivation policy in the web appendix. They rightly point out that it's impossible to know from this study whether the above correlation indicates a cause-effect relationship. Hopefully, further research is forthcoming. Policy/procedure + education seems to be the key. Without the former, you probably risk having a nurse not having the proper tools/avenues to do what she knows. Without the latter, you risk having inappropriate delays in identifying patients for deactivation and unused or improperly used magnet.
Envision a theoretical scenario: A person with hours to days to live is sent home from the hospital with an active ICD. The ICD has not discharged previously. A hospice nurse frantically calls the medical director during her enrollment visit at the patient's home (on the same day of hospital discharge) because the patient is comatose and has been shocked several times. Perhaps if a hospice policy dictates that nurses seeing patients with ICDs should always have a magnet, this type of scenario could be averted or easily managed. Maybe the magnets are inexpensive enough that every nurse should have one in their car (even though it's not an every day occurence?)
The main point of this case is that someone should have thought about deactivation before the patient was sent home. I hypothesize that most hospice patients with ICDs were hospitalized shortly before hospice enrollment. Regardless of whether this is true, I'll surmise that there is usually plenty of time for the cardiologist/internist/palliative care clinician to come up with a plan for ICD deactivation with the patient or family. Consideration of a hospice referral should trigger any of the above providers to readdress the goals of ICD and consider deactivation, but in many patients, it's appropriate to have this conversation well before hospice referral. So in an ideal world (we're working on it), it should be a non-issue for most patients once they are enrolled in hospice. Goldstein has previously identified barriers that may prevent physicians from bringing up this topic. Maybe hospice nurses don't share these barriers.
Does your hospital, cardiology service, or palliative care team have a policy or procedure for these discussions?
Even if every physician could manage this conversation, some patients would elect to keep the device programmed for discharge at the time of hospice referral. Because of this and the fact that the ideal world won't arrive soon enough, hospices should definitely get to work on their ICD policies and procedures.
Here's more information on deactivating an ICD. (Disclaimer: I have not independently verified the veracity of this information although I do have direct experience with deactivating the Boston Scientific ICD and the instructions listed seem correct- when this device emits a faint beeping sound after a magnet is placed over it, you know it is deactivated. A large household magnet can work but it's probably most effective to have an ICD magnet on hand.)
P.S. The Population-based Palliative Care Research Network (PoPCRN) assisted with the development of this survey. Check them out if you haven't heard of them. PoPCRN's director, Dr. Jean Kutner, just won an AAHPM Distinguished Service Award at the Annual Assembly. Congrats!
16 Responses to “Implantable Cardiac Defibrillators- Hospice Role in Deactivation?”
March 09, 2010
Great article. Several observations:
1. I'm surprised at the number of patients that don't have any discussions with their primary care doctor or cardiologist about the defibrillator and don't know any information about it. They usually have not had a discussion about when they want it turned off and what it entails.
2. I think for us in the Palliative Care realm these discussions should not be difficult. I've had them before and after patients have come on hospice. If I catch them during a Palliative Care eval, I will discuss it prior to discharge. If it's in a patient coming from another hospital or is already at home, I will investigate if they have a defribrillator and if they do I will have it turned off ASAP once the family consents.
3. I'm at 100% of patients and families agreeing to turn them off. Once patients and families realize that you are NOT TURNING OFF the pacemaker then they usually agree to have the defibrillator turned off without hesitation.
4. If unclear and the family is not sure about details, call the cardiologist and have a discussion.
March 10, 2010
My experience doing PC consults in hospital with ICD deactivation has been mixed. I find it is always preferable to call EP to deactivate the "shock" portion of the ICD once we esablish DNR status, before referring the pt to hospice. Often we are seeing dying patients who had their ICD placed fairly recently, and sometimes we encounter a cardiologist who looks at us like we have 10 heads when we ask to have the ICD turned off.
I agree with hospicephysician that cardiologists do not seem to have an adequate discussion with pts and families about ICDs. There is no financial incentive to do so. I believe the cost of deactivating an ICD should be bundled with the reimbursement for implanting the ICD in the first place.
March 10, 2010
The core problem is that most physicians do not counsel patients on interventions based on "outcomes". I am willing to bet that most AICD conversations that cardiologists and CV surgeons have are about "well, you don't want to die, do you?", rather than "this is what your life will be like:.......". Only when the device fires the first time do the patient/family understand what they have gotten themselves into.
That being said, those who work with these patients should feel comfortable discussing the goals of care of this device the same way they discuss the goals of care of continuing clopidogrel, atorvastatin, radiation, hydration, etc, etc.
I disagree that "our" goal should be 100% AICD deactivation. Our goal should be to assist the patient in defining his/her own goals and if that is continuation of an active AICD, understanding what that means, then so be it. This work is never about us; it's always about the patient.
And finally, going back to the comments of the original blog regarding having every hospice and PC nurse drag around a magnet, my experience has been that magnets that you can place on the device do not reliably deactivate them. We have had much better success contacting the manufacturer who will rapidly deploy a rep to deactivate it.
March 10, 2010
In regards to anonymous' statement, in no way is my goal only to "turn off" the AICD. I agree completely and wholeheartedly with the statement..."Our goal should be to assist the patient in defining his/her own goals and if that is continuation of an active AICD, understanding what that means, then so be it. This work is never about us; it's always about the patient." When I mentioned 100% agreement, I was referring to patients and families that want to be a DNR and want no life sustaining treatment. Furthermore I meant that so far 100% of patients have decided to turn them off but in no way did I mean to say that MY GOAL was to have them turned off 100% of the time. Furthermore, I can't imagine in the light of comfort care, DNR and no life sustaining treatment that someone would want to continue with an activated AICD, although I'm sure someone out there has that experience.
March 10, 2010
I'm amazed at the number of patients who have no idea what the ICD is for..these are often folks who got an expensive "upgrade" at the time of their battery change. When explained in the context of desiring DNR status, most of these patients demand deactivation.
We've had several patients referred to hospice homecare from the hospital with the stitches still in from their ICD install; offering these devices inappropriately is another discussion.
March 10, 2010
Thanks for all the great comments. You've all highlighted important issues.
I think that a minority of patients may reasonably wish to keep the AICD active even when they are DNR (I can remember a patient or two). Even though the shock associated with AICD is usually described as quite unpleasant, there's some difference from both a QOL and Prognosis standpoint between getting shocked by your ICD in the lazyboy immediately after the developemnt of a vent arrythmia vs. undergoing CPR/intubation on your living rm floor 5-10 minutes after you've gone down. That being said, my experience has also been that most patients who wish for DNR also want their ICD deactivated.
Add ICDs to the list of examples where inform consent doesn't seem to be fully obtained all the time...
Anon- the magnets with every nurse was somewhat tongue in cheek. I agree the best way to take care of deactivation is timely communication with EP or device company. I've not had problems with magnets not working (at least the "official" magnet from the device company).
John- basically: "As a parting gift from the world, here's your ICD." Wow. I haven't had to make a phone call like this before: "Yeah, when you take the stitches out could you go ahead and just deactivate the device while you're at it? Thanks."
March 11, 2010
Part of the beauty and the curse of implanted devices is that patients and the families often forget they have a device capable of shocking them (esp if they've never had a shock before). Patients that are dying of cancer understandably have their focus on the problem at hand. Further, the ability to follow these devices remotely lends itself to local docs forgetting to check these devices or that even a device exists (Physical exam? What physical exam?)
Better education at the time of implant would help avoid aversion to device deactivation.
March 11, 2010
Dr. Wes,
Thanks for your comments.
I'm curious about your thoughts regarding the qualitative study by Goldstein that I mentioned and whether the themes ring true to you as an electrophysiologist (and others out there).
lyle
March 12, 2010
Very nice post. I can see why Dr Wes linked this story.
The ICD is clearly an important, but often misunderstood therapy. My wife who is a palliative care doctor tells me of stories like the aforementioned.
In cardiology and electrophysiology, there seems to be two camps: those that get the role of the ICD and those who believe death is always a failure, and simply cannot see the big picture. In my little pond, the latter group predominates.
The ease of implantation and favorable reimbursement of the ICD further accentuate the misuse problem.
A mini-family meeting before ICD implant, which seems to me a necessity, is not common place in the real world. This pre-ICD meeting is emotionally draining and poorly compensated.
Congratulations on bringing this important topic to light.
My thoughts on a recent study suggesting too few ICD's are implanted:
http://drjohnm.blogspot.com/2010/02/note-to-professors-from-real-world-on.html
JMM
March 13, 2010
Lyle-
Like you, I think the survey brings an important issue to light: hospice administrators don't usually think about these issues with implanted devices. But it needn't stop with ICD's. Neural stimulators, insulin pumps, etc. are becoming increasingly commonplace and hospice intake questionairres should include questions regarding ALL medical devices.
March 15, 2010
Dr. John-
A family meeting pre-implantation is a great idea- that's bread and butter palliative care stuff, and probably not too emotionally draining for most of us....perhaps an opportunity for collaboration.
Dr. Wes-
Good point about other devices. In the checks/balances of medicine, hospices certainly have a role in looking out for these devices. However, I think the referring physician (who sometimes becomes the physician following the patient with hospice) should largely be responsible for anticipating the issues involved with the devices as the patient's condition deteriorates. If not, the physician inheriting the patient should review all of this closely. The "handoff" to hospice can be just as important as other "handoffs" frequently discussed.
ICDs are unique because of their usually "dormant" nature in the patient's physiology. With an insulin pump, the presence of this should be immediately obvious at the time of intake (ie upon medication review). The dose of medication needs to be downtitrated to allow for changes associated with anorexia/cachexia, liver metabolism, etc, as well as changes in target blood glucose.
Lyle
March 15, 2010
I have tried to incorporate into my regular initial physical exam a thorough palpation of the upper chest looking for ports, pacemakers, and defibrillators. I started doing this after finding that asking about "any lines or devices implanted?" had a higher fail rate when asked and I got many quizzical looks.
It is starting to be more routine to also include in the dictation the presence (or absence) of such devices or ports.
of course as a hospice medical director I don't get to see all the patients admitted to hospice, so I have encouraged the nurses to do the same.
March 16, 2010
I'm a hospital-based ethicist who recently reviewed a case involving a surrogate (husband) who wished to turn off his actively dying wife's pacemaker - believing it was prolonging her death. The consulting cardiologist was understandably uncomfortable with this request (which was relayed via the attending physician's nurse) but after a conversation with the family, he reluctantly agreed to do it.
After a retrospective case review by our clinical ethics committee (requested by the cardiologist), we set out to revise our existing Withholding/Withdrawal of Treatment policy to include a section on ICD's. After reviewing several good articles on the subject - http://www.medscape.com/viewarticle/576539 in particular - we discovered a significant gap in physician comfort between deactivating a defibrillator versus a pacemaker (57% vs 34%). We then asked our entire cardiology staff to review the literature and make policy recommendations that both reflect and clarify current practice. The result was an adaptation of the ACC/AHA/HRS 2008 Guidelines for Device-Based Therapy of Cardiac Rhythm Abnormalities, with a statement recognizing the defib/pacer gap:
"There is general consensus regarding the ethical and legal permissibility of deactivating implanted cardiac devices in dying patients who request deactivation. These include pacemakers, implantable cardioverter-defibrillators (ICD), and cardiac resynchronization therapy (CRT) devices. Given the clinical context, all three can be considered life-sustaining treatments and may be refused by patients, given that ethics and law make no distinction between withholding and withdrawing treatments. However, research to date indicates that clinicians involved in device management generally make a distinction between deactivating a pacemaker and deactivating an ICD or CRT device. Thus, any request to deactivate an implanted cardiac device should precipitate a thorough discussion about the consequences and possible alternatives to device deactivation. A summary of this conversation should be included in the medical record."
Followed this up with an Ethics Grand Rounds on the case/topic.
Sorry for the lengthy post; thought it might be of use to hospital-based physicians.
Excellent blog, by the way - read it often.
March 16, 2010
This is just another example of how Palliative Care should be a partner from the very beginning of patients with a life limiting diagnosis.
Anyone getting an ICD has advanced cardiac disease.
Too often, they only deal with cardiologists/cardiovascular surgeons who don't go beyond the present. "I can keep you from dying by doing this". But never: this is not going to make you "like new" where you can go on as if you don't/never had heart disease...benefits/burdens need to be discussed and explored along with the patient's goals and expectations plus follow up afterwards to see where they are at after actually receiving these interventions.
I think this is one of our biggest challenges in PC--educating non-PC physicians and administrators about the urgent need for PC to be part of all teams from the get go...
March 18, 2010
Great comments. I wanted to share my 2 cents regarding the role of pall care fam meetings and advanced care planning prior to AICD placement. I agree this is a physician education issue, and it's challenging b/c we're trying to persuade the "experts" in AICDs, namely the EP MDs, on how to counsel pts. I doubt many of them are going to be very receptive to our suggestions, seeing they are likely to know much more about these devices then us, even though we know may have a better connection to the realty that all people, even with AICDs, will die. I can also understand why EP MDs may be hesitant with us PC staff sitting in the room while they did their counseling. From a practical sense, I think we need to raise awareness of this issue, but recognize the limitations in our attempts and realize that EOL issues with AICDs aren't going away and it's going to be a routine part of our practice to deal with them while people are actively dying -- this includes magnets and the like.
I try to keep in perspective, that so many of these pt's do great for years and years, including the pts who've been shocked. I've cared for pt's who were very functional, independent and have been shocked 20+ times and didn't seem that bothered by it. We have a practice bias in that we predominantly are seeing the pts during only one part of their life journey with the device.
I guess I just have my doubts about how effective pall care fam mtgs would be for o/w healthy pts who are getting an AICDs: many of them are just not there yet and I get the sense you'd hear the question "now why are you guys here?" alot. I personally feel an emotional toll as a pall care MD in these experiences, specifically, I'm in the room with the clear role of talking about advance care planning and EOL when no one else in the room is interested in participating because these issues seem so far away.
May 27, 2010
Nice job! I have an ICD implant myself. Would love to discuss.
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