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ECT: Making an Informed Choice

NYAPRS Note: The Pataki administration recently has also made available a draft copy of a new brochure aimed to enhance informed use of ECT by prospective users. It is expected that this material will be revised over the next few weeks. Those wishing to offer feedback should contact John Allen at the Office of Mental Health (518-473-6579).  John will be conducting a workshop at this fall's NYAPRS Conference on ECT-related issues (see conference materials at www.nyaprs.org ). 

ECT: Making an Informed Choice

If you are reviewing this information, either you and or your doctor are trying to decide if ECT is right for you. As in any medical procedure or treatment, it is often recommended you prepare a list of questions which will help you obtain information you need to make your decisions. This is a guide to assist you in developing those questions. Some basic information is provided to assist you in developing your own questions, relevant to your own concerns, to make a decision that is right for you.

Your doctor and treatment team are the best source of information about this procedure and how it may be tailored to your specific needs. In addition to your treatment team, there are a number of resources you may wish to consult including other physicians, literature, the internet and individuals who have had ECT. Your decision will likely involve a combination of factors including psychiatric diagnosis, type and severity of symptoms, prior treatment history and response, identification of possible alternative treatment options and your preference.

Informed Consent

What is informed consent?

Informed consent should include adequate and understandable information on the ECT procedure. This should include the reason for treatment, expected benefits, reasonably foreseeable risks and any reasonable alternatives available. It will also include an evaluation of your capacity to factually and rationally understand and appreciate the nature and consequences of the proposed treatment and your ability to reach reasonable decisions based on such information. Your doctor must document that you are made aware that you have a right to have a person of your choice present when they are asking for your consent to administer ECT. The treatment team must also document that you were informed of your right to refuse treatment and the possible consequences of such refusal. You can consult and ask your treatment team members, family members and friends, for input into your consent process.

The consent process

As part of the consent process, you should be given ongoing feedback about clinical progress and side effects as well as any factors that may substantially influence these outcomes. The consent process generally includes coverage of the topics listed below.

1. Who is recommending ECT and for what reason

2. A description of applicable treatment alternatives for the patient

3. A description of the ECT procedure, including the times when treatments are given (e.g., Monday, Wednesday, Friday mornings) and the location of treatment (i.e., where treatments will take place)

4. A discussion of the relative merits and risks of different types of stimulus electrode placement and the specific choice that has been made for the patient

5. The typical range for the number of treatment to be administered and a statement that reconsent will be obtained if the number of treatment in the index course exceeds a set maximum number (for that facility)

6. A statement that there is no guarantee that ECT will be effective

7. A statement that there is generally a substantial risk of relapse after ECT and that continuation treatment of some sort is nearly always indicated

8. The likelihood (e.g., 'extremely rare,' 'rare,' 'uncommon,' or 'common') and anticipated severity of major risks associated with the procedure including mortality, adverse effects on cardiovascular and central nervous systems (including transient and persistent cognitive effects), and common minor side effects

9. An acknowledgement that consent for ECT also entails consent for appropriate emergency treatment in the event that this is clinically indicated

10. A description of behavioral restrictions that may be necessary during the pre-ECT evaluation period, the ECT course and the recuperative interval

11. An offer to answer questions at any time regarding the recommended treatment and the name(s) of the individual(s) who can be contacted with such questions

12. A statement that consent for ECT is voluntary and can be withdrawn at any time

Do I have to give informed consent for ECT?

Patients have the right to be fully informed about the proposed ECT treatment. As a patient you have the right to consent to ECT treatment or refuse the treatment unless it is determined that you lack the capacity to consent. As long as you have the legal capacity to make your own decisions, ECT cannot be given over your objections. For those individuals who lack the legal ability to consent, court authorization may be sought to provide ECT if the benefits outweigh the risks.

If I'm in a hospital do I have the capacity to consent or withhold consent for ECT treatment?

The American Psychiatric Association suggests that the individual obtaining consent consider the following general principles in making this determination. First, capacity to consent should be assumed to be present unless compelling evidence exists to the contrary. Second, the occurrence of psychotic ideation, irrational thought processes, or involuntary hospitalization do not in themselves constitute such evidence. Third, the patient should demonstrate sufficient comprehension and retention of information, as well as adequacy of judgment and decision making, so that he or she can reasonably decide whether to consent for ECT.

Will I have to sign anything?

You should sign a written consent document that should include: reason for the recommendation of ECT; description of alternative treatments; description of ECT procedure; discussion of benefits and risks including different placements of the electrodes and the reason for the placement recommended; the range and number of treatments you are approving; a statement that there is no guarantee that ECT will be effective; statement regarding the need for continuation/maintenance somatic treatment; description of major risks and likelihood of occurrence; a description of the common side effects; statement that consent for ECT also includes consent for clinically necessary emergency treatment; a description of restrictions on your behavior before, during and after treatment; evidence that you had an opportunity to ask questions; and a statement that ECT is VOLUNTARY and may be withdrawn at any time by you. Make sure that you have any questions about the procedure answered before you sign.

Questions that you may wish additional information

There are many sources of additional information that you may wish to consult prior to making your decision regarding ECT. Since your treatment team has explored ECT with you, they are one place to begin. The following questions may help you to think about the issues and concerns that you would like addressed prior to making your decision. What is Electroconvulsive Therapy (ECT)? What is the science supporting ECT? How does having a seizure help with my mental health? Who is treated with ECT? Who administers ECT? How is ECT given? How many treatments are needed? Is ECT curative? How safe is ECT? What are the common side effects of ECT? Does ECT cause brain damage? How does ECT work? Is ECT frightening? What will I experience physically following treatment? Where can I find first-person accounts of ECT? Where can I find other information sources on ECT? What other treatments and alternatives are available in place of ECT? Why is ECT being recommended over other treatments and alternatives? Is this procedure covered by my insurance? How long will each treatment last? How long is the recovery period after each treatment? Is there anyone who has been through this procedure I can speak with? What are the reasons others have chosen not to have it done? What does the research show about effectiveness? Do you as a doctor have special training to administer ECT? Can ECT cause other health problems? Does the procedure hurt? Will ECT be provided as the only treatment or will it be used in combination with others?

Will ECT help?

There is little scientific understanding on how ECT works. Clinical studies suggest that with ECT, remission rates, depending on criteria, were 30.3% to 46.7%. Longer episode duration, comorbid personality disorder, and schizoaffective disorder were associated with poorer outcome. Among people who got some remission, the relapse rate during follow-up was 64.3%. Relapse was more frequent in patients with psychotic depression or comorbid Axis I or Axis II disorders. You should discuss with your treatment team your anticipated prognosis and other risks factors that might affect the outcome and your risk of relapse.

ECT Classification

The National Food and Drug Administration which regulates medical devices have classified ECT devices as a Class III Medical Device. Class III is the most stringent regulatory category for devices. Class III devices are those for which insufficient information exists to assure safety and effectiveness solely through general or special controls. Class III devices are usually those that support or sustain human life, are of substantial importance in preventing impairment of human health, or which present a potential, unreasonable risk of illness or injury.

Assessing Risk

The following background information is provided to facilitate a discussion of your personal risk factors with your treatment team.

What may increase risk?

A medical history and physical examination are essential to your doctor in order to evaluate and minimize risks associated with ECT. Factors that significantly increase risk may include: pregnancy, unstable or severe cardiovascular conditions (including angina and congestive heart failure), aneurysm or vascular malformation, increase intracranial pressure, cerebral infarction, or pulmonary insufficiency (including asthma or pneumonia). If you have any of these conditions, you should make sure your doctor knows and discuss approaches to minimize the risks which may include changes in preparation or treatment delivery technique. Other conditions such as myasthenia gravis, stroke, Parkinsons, multiple sclerosis, cardiac arrhythmias, angina, hyperthyroidism, hyperkalemia, hyponatremia, urinary retention, osteoporosis, existence of skull defects, should be reported and discussed with your clinician and treatment team in making your decision.

How will I be evaluated for risk?

Careful medical evaluation of risk factors should be carried out prior to ECT. This may include laboratory or specialist consultations depending on your specific circumstances. Individuals with a history of cardiac conditions may need an electrocardiogram (ECG) and / or chest radiograph along with measurement of serum electrolyte levels to fully evaluate their risk.

Will ECT affect my ability to learn?

Recent studies suggest that verbal learning decreased by a mean of approximately 50% immediately after a completed course of ECT as compared with pre-ECT verbal learning scores. These findings support the notion that the deficits in delayed recall after ECT represent a relatively specific cognitive effect.

If I have had diarrhea recently or experienced other illness that may contribute to dehydration will that affect ECT?

Dehydration may be associated with other types of electrolyte imbalance and should be discussed with your treatment team.

Does acid reflux pose any concern for ECT treatment?

Individuals who experience esophageal reflux with or without a hiatal hernia may have an increased risk of aspiration since ECT requires the use of anesthesia. If you have problems with reflux you should ask your doctor and treatment team how they will deal with this during the procedure.

If I have a pacemaker are there special considerations for ECT use?

Some practitioners choose to take extra precautions for individuals with cardiac pacemakers.

If I have a seizure disorder like epilepsy will this affect ECT?

In patients with epilepsy, medication will need to be optimized in order to maintain effective seizure control. You may wish to ask for your team how they will review and plan for this.

Does glaucoma pose a risk for my receiving ECT?

Certain medications for glaucoma, along with the condition itself may pose at least a theoretically concern and should be discussed with your team.

Should I have any concerns about my teeth?

An assessment of your teeth should be included as part of the pre-ECT assessment. When teeth are unstable or unlikely to withstand pressure associated with the contraction of jaw muscles during ECT stimulus, they may need to be protected or other precautions taken. If you have removable dental appliances, you should discuss whether they should be removed before ECT with the clinical team.

Does my age pose any concerns for the administration of ECT?

All somatic treatments, including ECT, are associated with increased risk in the elderly, particularly those with concurrent physical illness. Elderly patients may be at greater risk for more persistent confusion and greater memory deficits during and after ECT treatment. You may want to ask the treatment team how they will evaluate this risk and what will be done to help restore functioning.

How does pregnancy affect ECT?

An obstetrician should be consulted prior to ECT to clarify the risks to the patient and fetus and to suggest any indicated treatment modifications. Special emphasis should be placed on assessing risk factors for spontaneous abortion, preterm labor, abruption, and uteroplacental insufficiency. After 20 weeks of gestation, a wedge should be placed under your right hip to displace the uterus from the aorta. Before each treatment, intravenous hydration with a non-glucose-containing solution is also suggested. For post-ECT headache and muscle soreness during pregnancy, acetaminophen is the treatment of choice. You should ask your doctor before taking aspirin particularly in the third trimester of pregnancy because it may contribute to altered maternal and fetal hemostasis. If you are near-term or have other high risks, you should discuss with your team how they will monitor any sign of fetal distress. . If I am nursing, will ECT pose any effects? Medications administered during ECT may be excreted into breast milk. Consequently, the indications for such medications and their potential effects on the nursing infant should be evaluated prior to administration. You may wish to ask about collecting and storing breast milk prior to ECT for bottle feeding.

What should be considered if I have diabetes?

Patients with unstable or insulin-dependent diabetes mellitus should be considered for medical consultation before ECT to help ensure appropriate adjustments in diabetic management, particularly with respect to the period of pre-ECT fasting.

Are there special concerns regarding the use of ECT for children or adolescents?

Few studies address the use of ECT in children and adolescents. ECT for children should be provided with the concurrence of two consultants experienced in treating psychiatric disorders of children. These consultants should deliver their opinion only after interviewing the patient and family or other collateral sources, reviewing the clinical record, and discussing the case with the patient's attending physician. You may wish to ask the treatment team how it might intervene to terminate the possibly increased likelihood of prolonged seizure in children and adolescents.

What is the likelihood that I may experience short term or permanent memory loss as a result of ECT?

Cognitive side effects produced by ECT are the major complications limiting its use. Among depressed patients without known neurologic disease, evidence has indicated that the extent of pre-ECT global cognitive impairment (as measured by the Mini-Mental State Exam (MMSE) scores predicts the magnitude of retrograde amnesia for autobiographic information at long term follow-up. For this reason you may want to ask that a MMSE be conducted to evaluate your potential risk.

Following ECT, patients display retrograde amnesia. Deficits in recalling both personal (autobiographic) and public information are usually evident and are typically greatest for events that occurred closest to the treatment. Usually, as time since ECT increases, the extent of retrograde amnesia reduces substantially. In some patients the recovery from retrograde amnesia will be incomplete, and evidence has shown that ECT can result in persistent or permanent memory loss (Lisanby et a. 2000; McElhiney et. Al. 1995; Sackeim et al. 2000). For some people this may include loss of people and place names. It may include a disruption of your memory around loves ones or meaningful events in your life. You may want to talk with your clinicians about how they will help you address these concerns if you experience these effects. Individuals with Alzheimer's disease, Parkinson's disease or stroke may have an increased risk of ECT induced delirium and memory deficits which you should discuss with the treatment team. Will I experience a headache from receiving ECT and how might it be treated? Headache is a common side effect of ECT and is observed in as many as 45% of patients during and shortly after the recovery period. It is not known whether preexisting headache syndromes (e.g. migraine) increase the risk of post-ECT headache, but ECT may exacerbate a previous headache condition.

Is there a risk of death from ECT?

The rate of mortality attributed to ECT is estimated to be approximately the same as that associated with minor surgery. When mortality occurs with ECT, it typically happens immediately after the seizure or during the recovery period. Cardiovascular and pulmonary complications are the leading cause of death. Two other risks come from prolonged seizures and continuous seizure activity lasting longer than 30 minutes. These conditions may be more likely in patients receiving medications or having medical conditions that lower seizure threshold or interfere with seizure termination. As in other medical procedures, different hospitals, doctors and facilities often have different expertise and some have lower mortality rates for certain procedures than others. You may wish to ask your doctor how many times he has performed this procedure and what his mortality rate is.

Assessing Treatment Provision

The following background information is provided to assist you in discussing with your treatment team, options on how this service may be provided.

Who will administer the ECT?

Each hospital will have standards on who will be on your ECT treatment team. An anesthesiologist or nurse anesthetists will provide anesthesia during the procedure. If you have multiple risks or are determined by your doctor to be a high risk for ECT, you may want to be certain that the team includes a certified anesthesiologist.

What equipment should be available while I have ECT and in the recovery area?

The APA recommends that the treatment site contain all of the equipment, medications and supplies to administer ECT safely. Depending on your risk factors this should include ECG monitoring equipment, blood pressure monitoring device, oxygen delivery system, and a defibrillator. You may want to ask your team about their equipment and whether the facility has a backup ECT device available.

Will I be an inpatient or outpatient?

ECT may be provided on an inpatient or outpatient basis. You and your treating physician should determine which is appropriate for your situation. Certain conditions including risk should be evaluated in making the decision.

What equipment is used to administer ECT?

There are a variety of devices available to administer ECT. Each device must be approved by the FDA but may vary in the number or types of features included. ECT devices vary in using pulse currents ranging from 500 to 900 milliamps (mA). Devices vary in their ability to vary the duration of each pulse between .025 and 2.0 ms. Because of limited success in predicting the wide individual differences in seizure threshold on the basis of patient or treatment factors, a titration procedure is usually conducted at the first treatment to establish the settings required to produce an adequate seizure using the minimal settings. For this reason newer equipment which has the ability to be adjusted to the lowest increments should be preferred by patients. You may wish to ask for the pulsewidth adjustment interval of machine that will be used. Currently the lowest available machine can be calibrated within .25 msec. as opposed to other machines which have pulsewidths of 1-2 msec. The lower the fractional number the more closely the doctor can calibrate the dose for you as an individual. If the hospital or place where your ECT treatment are proposed lacks equipment which can be finely calibrated, you may wish to ask about options for receiving this treatment at another facility which offers the latest technology and safeguards.

Brief pulse or sine wave stimulation?

There are different types of output for an ECT device including brief pulse waveform and sine wave. The regular use of sine wave stimulation in ECT is not supported by the New York State Office of Mental Health. Any use of sine wave stimulation should be by exception and must be justified and documented. You should be informed of the risks and anticipated benefits of using sine wave stimulation as compared to brief pulse stimulation and should have the option of choosing brief pulse stimulation. The APA states that the 'continued use of sine wave stimulation in ECT is not justified. Since wave stimulation is inherently inefficient in electrical dosing, results in more severe cognitive side effects, and has no advantages with respect to efficacy.'

This 'Mental Health E-News' posting is a service of the New York Ass'n of Psychiatric Rehabilitation Services, a statewide coalition of people who use and/or provide community mental health services dedicated to improving services and social conditions for people with psychiatric disabilities by promoting their recovery, rehabilitation and rights. To join our list, please click on the E-News Subscription button.

Last Updated on 08/06/04   webmaster@namiscc.org

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