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Second Opinion: Implantable Defibrillators
Hosted by Abigail Trafford
Washington Post columnist
Tuesday, July 31, 2001; 2 p.m. EDT
Welcome to Second Opinion, a weekly column and Health Talk discussion with Post Health columnist Abigail Trafford.
Vice President Dick Cheney's recent heart problems has shed light on the importance of implantable defibrillators. . Billed as an "emergency room in your chest," the device can shock the heart and bring potentially fatal heart rhythms back to normal. It's one of the most effective items on the technology hit parade.
Unless you're at the end of your life. Then it can be an obstacle to a peaceful death. The last thing you want to have happen in your final days or have your family witness is a jolt from the device in your chest. As these devices become more common, it's important to determine when they should be implanted to give the patient the maximum benefit and when they should be turned off.
Our guest today is Jon B. Fuller, the medical director at San Francisco Medical Center.
The transcript follows.
Editor's Note: Washingtonpost.com moderators retain editorial control over Live Online discussions and choose the most relevant questions for guests and hosts; guests and hosts can decline to answer questions.
Abigail Trafford:
Hello everybody. Is your heart beating . . . a little erratically? Seriously, do you have some signs of heart disease? Do you think you might benefit from the kind of defibrillator that's in the vice president's chest? Send us your comments and questions. We're on.
Abigail Trafford:
Dr. Fuller, welcome to Health Talk. Let's talk about the defibrillator implanted in Dick Cheney's chest. What does this device do? Who should get one?
Jon D. Fuller: Implantable defibrillators were developed I believe in the early 80's. They are an option for the treatment of life threatening cardiac arrhythmias. They are usually reserved for individuals who continue to have dysrhythmias (abnormal heart beats) despite being on several different kinds of medications. They really have been a boon to the treatment of dysrhythmias.
Abigail Trafford:
Even good technologies have unforeseen consequences. What is the problem with these devices at the end of life?
Jon D. Fuller: Although these devices are a tremendous development in the treatment of dysrhythmias, they do cause significant turmoil in individuals that are near the end of life. The issues is that when someone is near death, the machines continue to provide a powerful jolt trying to correct the heart rhythm. This is particularly problematic to hospice organizations who are trying to provide peaceful deaths to their patients. Just as the family and patient have become accustomed to the realization that their loved one is dying, the defibrillator can intervene and cause significant distress to the final process.
Abigail Trafford:
It seems that these devices are sometimes implanted in patients in the months before they die--or shortly before they enter hospice care. That seems to be a misuse of technology--an unneccessary procedure and expense for the patient. What do you think?
Jon D. Fuller: This really is a tricky issue. It really relates to how close individuals are to death that have this abnormality. Since it is a life threatening disease, naturally, some folks actually are going to die. Therefore, it is no surprise that some people will die shortly after receiving the implant.
This issue also really relates to the view of death and dying in this country, meaning that it is an issue that no one is really comfortable in addressing...nobody including patients or health care providers. In fact, it is often said that Americans view death as an "option" when in reality, it is about the only certainty that we face in medicine.
Mt. Rainier, Md.:
Thank you for mentioning a peaceful death as one of the contraindications. I wish very much people would think and plan for death when they become elderly or sick - or maybe even before. Medical personnel (esp'ly paramedics) are stressed out by being forced to aggressively treat people who should be allowed a quiet demise. In case of terminal illness, a defibrillator should never be used IMHO.
Jon D. Fuller: Planning for death is a particularly important event to accomplish. All too often, it is the event that is put off until tomorrow. Additionally, we have an entire health care system that is organized around acute medicine. You mention that there is a difficulty when paramedics respond to an instance when someone may be dying. They are expertly trained in how to resuscitate someone in an emergency and can give that person a very expensive ride to the hospital via ambulance and have someone admitted to an expensive ICU. What we have not figured out how to do as an health care organization is how to emergently respond to someone to hold their hand.
As for advance directives (documents attesting to end of life wishes), the Omnibus Reconcilliation Act of 1990 has required that all health care facilities that accept federal monies for the care of patients inform them about their options for health care decisions at the time they are admitted to the hospital or facility. The purpose of this act is to foster the development of advance directives. In the decade that has passed since its introduction, there is still only at best estimates a 20% completion rate by the population.
This issue then makes me further contemplate what types of discussions Vice President Cheney may have had with his provider about advance directives. In fact, I wonder if Mr. Cheney has formally completed such directives. In addition, by the seriousness of cardiac dysrhythmias requiring implantation of ICD's, I also wonder what discussions he has had concerning his own eventual death...after all, we will all have one.
My approach is to attempt to focus discussions about death and dying proportionately to the likelyhood of it happening. Meaning, that if someone has say a 50-50 chance of dying of some illness, then I believe that 50% of the focus should be on the possible outcome of dying. In reality what happens is that 99% of the discussions and effort are focused on living and 1%, if that is directed toward the other possibility. In addition, there is little downside increasing attention to the possibility of death because what if you're wrong and the patient lives? No a bad outcome to be wrong on.
Prospect, Va.:
Are PVCs dangerous? I am on Toprol 50 mg daily for high blood pressure and to help the PVCs. Abigail Trafford:
Tell us what PVCs are. Are they an indication for this device?
Jon D. Fuller: PVC's are "Premature Ventricular Contractions". Are they dangerous?...that really depends on your specific case and the details of that case which I cannot really comment on.
In general, PVC's are usually of no consequence and usually are no indication for the usage of an ICD.
Kittery, Maine:
Is the cost of intalling one of these devices restrictive so that only the very rich and well-insured can benefit from them. Who decides who is eligible and is it covered by insurance?
Jon D. Fuller: This is a great question. It really points to the value we as a society place on various types of therapy. First of all, I noticed in a recent post article that Medicare has decided to decrease the amount of reimbursement they are allowing for the procedure...to something just under $30,000. Will it be only available to the rich and well-insured...I'm sure that is really not the intent of the technology and in fact, I'm sure the opposite is the desired effect, but as with health care in general, it is usually only readily available to those who are rich or well insured and variably available to those of us in-between.
As for the cost and societal priorities for the distribution of health care, Joann Lynne, MD of the Americans for the Better Care of the Dying (ABCD) points out
that the total cost of implantable defibrilators (this ONE device) is nearly equal to the entire budget for all of hospice care in this country on a per year basis. Is that equitable? You decide. Will it be available to you? Will hospice care be available to you? I don't know.
Maryland:
My heartbeats are slightly irregular sometimes. First time it happened, I panicked and went to a doctor, but he said I'm okay and it's just stress, many people have it and just relax. However, lately my heart goes crazy more often and many times for no reason at all (no stress or physical effort). Should I go back to a doctor, or is this normal? It doesn't hurt, it's just annoying, like losing your breath now and then. Thanks.
Jon D. Fuller: At this time, I am a 'virtual' doctor and so, unfortunately, cannot really comment on your specific case. I would suggest that it wouldn't hurt to have it checked out again. Anytime someone "loses their breath", I would tend to be a little more worried than not. Breathing is pretty important.
Abigail Trafford:
A followup on Maryland: how do you know if you suffer from arrythmyias? How do you know if they are life-threatening? Are they ever "normal?" What's the difference between an arrythmia and a palpitation or fluttering of the heart?
Jon D. Fuller: Cardiac rhythms often are silent. In fact, the general rule is that normally, you will have occasional abnormal beats. So the real question is "are the abnormal beats abnormal". The vast majority are not.
For life threatening arrhythmias, there usually is some element of heart disease that has preceeded the abnormal rhythm, so one would usually have some idea that they may be present or that one may be at risk for having. On the other hand, we have all heard of individuals that drop dead unsuspectantly for no apparent reason and with no warning.
As for the term "arrhythmia", it technically means "without rhythm"...'a'-without-'rhythm'. It is impossible to live "without rhythm" so the more accurate term is "dysrhythmia" or abnormal rhythm. In reality, the term arrhythmia is always used to really mean dysrhythmia.
To the second part of the question..."palpitation vs fluttering"...both of these are arrhythmias. Arrhythmias (dysrhythmias) is a term used to describe all abnormal rhythmias, each rhythm has its own characteristics. The heart can have different kinds of patterns of beating that are all characterized and have different names. Its much like static on the TV...is it fuzz, horizontal/vertical lines, snow, squiggles, etc...they are all static and may mean different things.
Abigail Trafford:
Do cardiologists usually discuss the the potential problems with the device upfront? Do they say: "There may come a time when the device is no longer a benefit. What are your plans about turning it off?"
Jon D. Fuller: I've not personally witnessed specific discussions that have occured between cardiologist and patient so don't know for sure. That does not keep me from speculating that in fact, I imagine that the specific discussions about dying are minimized. Truly, no one likes to talk about death. This is true of cardiologists, any doctor really, and patients.
There is a requirement that before any procedure is performed on a patient that informed consent be obtained from the patient. The specifics of the informed consent are not always well worked out. It does make me wonder in the case of Vice President Cheney, what type of discussion did he have? Was he informed that this device may cause significant distress to he and his family near the end of his life? Was there a discussion about when, or even if, the cardiologist would turn the device off?
I did have a patient one time that the Cardiologist did refuse to turn off the ICD. Did the Cardiologist inform the patient at the time of implantation that he would be reluctant to turn the device off in the future? I don't know.
Abigail Trafford:
Some technical questions have come up about turning off the device. Some people think it's like "pulling the plug" and will lead to the patient's death. But this is not true. The device is on standby. It only fires if there's a problem with heart rythm, right? The manufacturer calls the implantable defibrillator like having an emergency room in your chest. It's only there in an emergency. How often do these devices usually fire? Are there two levels of shocks--soft and hardd--to bring the rhythm back to normal?
Jon D. Fuller: It is not really like 'pulling the plug', as you say, it is not really life sustaining, just life saving. The device does only fire if the abnormal dangerous rhythm is detected. The problem comes in that it does not necessarily recognize death...just like the rest of us.
As for it being life saving, in fact, contrary to what many newspaper headlines proclaim, no device or drug is truly "life saving". Again, this perpetuates the myth that death is an option. No life has actually ever been 'saved' by any drug or device, premature death may only have been averted.
Portland, Maine:
Does a patient have to have permission from a doctor to remove the device if they are elderly and nearing the end of their life? Say the device was installed years ago, can you then say "Hey, remove this now. If I have a heart attack at this point, I want to let nature take its course?"
Sort of like a Do not Resucitate situation?
Jon D. Fuller: Great question. You would certainly think that this would be straight forward, but as I commented earlier, some doctors may be reluctant to do such a thing. I think this really points to the area that is actively in discussion now as to what do we do at this point?
A corrolary might be what if someone who does not have an ICD wants to be DNR (do not resuscitate), is it possible that their wishes might be ignored and they externally resuscitated if their provider did not fell this was appropriate.
Germantown, Maryland:
Many terminally ill patients are comatose or non-responsive during their final days. How do you know if a pacemaker is distressing the patient? What are the signs?
Jon D. Fuller: An ICD device is different than a pacemaker. Technically, a pacemaker should not distress the patient at the end. The ICD on the other hand, provides a pretty substantial shock that can often be observed externally. As one is usually aware of the scenes on TV's ER, when someone is shocked in the ER, the body jumps, so can happen with an 'internal' shock from the ICD.
Cottage City MD:
A friend of mine has a dysrhythmia that sometimes speeds up her heart rate and sometimes slows it down. Would a defibrillator be useful in this situation? The speeded-up occurences seem to be the most painful and dangerous.
Jon D. Fuller: As I commented earlier, dysrhythmias come in many different flavors. The ICD is important for a specific 'flavor'. In order to know if it would be appropriate for your friend, the details of the dysrhythmia would have to be known.
VA:
I'm 33 years old. I have chest pains on the left side regularly. Is that Wolff-Parkinson-White syndrome? I went to 2 doctors and both said nothing to worry about. Abigail Trafford:
And please tell us: what is Wolff-Parkinson-White syndrome? What does it mean to have chest pains on the left side regularly?
Jon D. Fuller: Wolff-Parkinson-White syndrome is again a particular, specific described dysrhythmia. It is an abnormal conduction of the electrical current through the heart. Whether it is responsible for your symptoms, is very difficult to assess through the internet. It sounds like you have been assessed by two doctors which is probably the right thing to do. I'm sorry I can't give you specific advice about your pain.
Annapolis, Md.:
Hi: These devices aren't always implanted in a person who is nearing the end of life, which might explain a small part of why the issue of what to do at the end of life hasn't been carefully considered. At what point should this become part of advance care planning? And how does one include it in an AD?
Jon D. Fuller: As for advance directives, the real goal would be for you to identify someone that can make decisions on your behalf should you become incapable to do such. You should have a serious talk with the individual who you chose to make such decisions and relate to them what your values and wishes are. It is tempting to try and delineate each particular scenerio that might appear, but inevitably, the specifics of a certain episode will not be addressed. Therefore, being general in your wishes and prior life decisions to provide a framework for decision making would be most appropriate. If you do have heart disease and you have a particular concern about ICD's, this would be something that you may want to talk about with a potential surrogate decision maker. In fact, implantation of an ICD is still relatively rare and so would probably not come up. I would rather encourage you to spend your time discussing resuscitation, hospitalizations, and funeral arrangements, things that are much more likely to impact the end of your life.
Abigail Trafford:
Our time is up. Thank you all for your questions and comments. Thank you Dr. Fuller. Join me next week, same time, same place.
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