Patients’ experiences of and attitudes towards ECT

Since its introduction electroconvulsive therapy (ECT) has received varied responses from the public and the media. Even though it is an effective treatment, its use has been restricted to very few serious psychiatric disorders. In this paper, Dr Guruvaiah and colleagues capture patients’ and their carers’ positive experience and attitude towards ECT following their treatment, which can act as reassurance for patients undergoing this efficacious therapy.

ECT is a recommended treatment option for various psychiatric disorders, including severe depressive illness, catatonia and a prolonged or severe manic episode.1 Even though it has been in use since the 1930s, over the years its use has been restricted to fewer and more serious conditions. That may be due to the availability of various psychotropic medications, effective psychological treatment and, to some extent, the media’s negative coverage.2

Although ECT is a safe and effective treatment,3, 4 it remains controversial due to misconceptions and negative attitudes amongst patients and their relatives and due to the ambivalence4,5 amongst professionals. However, a study conducted in Scotland6 in the 1970s revealed that the majority of patients did not find the treatment unduly upsetting or frightening, nor was it a painful or unpleasant experience. In that study, most of the sample felt ECT helped them and hardly any felt it made them worse. In general, most patients had a very positive view about ECT.6 However, it was clear that patients wish to be told more about the treatment. Since its publication in 1980, we could not find any similar published literature in the UK highlighting the experience and the attitudes of patients and carers towards ECT. In 2003, the Royal College of Psychiatrists introduced practice guidelines and standards for administering ECT7 to assure patients that they will be provided a quality service, with due concern for their dignity and consent.

The aim of the study was to look at:
1. Current attitudes of patients and their carers towards ECT.
2. Patients’ and carers’ current experience of receiving ECT treatment, especially after the implementation of ECT Accreditation Service (ECTAS)7 standards.

Methodology

Sample
Patients who had had ECT at Worcestershire Health and Care NHS Trust between January 2013 and December 2014 were included in the study. A list of patients who underwent therapy was generated using the Trust’s patient data, including their demographics and current clinical contacts. The clinical governance department for the Trust gave approval for the study.

Interviewers then contacted patients and their care coordinators, if necessary, to arrange an interview schedule. Patients were offered the choice to take part in the study and those who agreed were given the written and verbal information. Informed consent (written / verbal) was obtained from those who agreed to take part in the study.

Questionnaire
A questionnaire was designed to capture patients’ experiences and attitudes, along with carer’s views about ECT. The design was based on a previous study6 and current ECTAS7 standards.

The questionnaire included:
• Patients’ demographic details
• Type of ECT
• Previous experience of ECT
• Mental Health Act status
• Diagnosis
• Information provided on ECT
• Consent process
• Experience before, during and after ECT
• Quality of care received
• Side effects
• Attitudes and experience regarding the outcome
• Carers’ experience of ECT.

Interview schedule
A group of interviewers (psychiatrists and psychiatric trainees) contacted patients individually to arrange an appointment for either a face-to-face or over the telephone interview. The timing of the interview was decided according to patients’ choice and convenience. The interview was arranged either at patients’ homes or at their clinic appointments. At interview, information about the study was given in a written or verbal format before obtaining patients’ consent. Interviewers used the questionnaire to elicit patients’ experience and attitudes. Carers were interviewed at the end, to include their views on ECT. Each interview lasted approximately 20–30 minutes. The interviews were conducted between January 2015 and April 2015.

Sixty patients, who had completed at least one course of ECT during the study period, were identified, of which eight people were deceased (not related to ECT: either due to old age or physical ailments), 11 refused to take part, six could not be traced and five could not take part due to significant cognitive impairment. At the end, our final study sample constituted 30 patients.

Results

Demographic details
The age of patients who participated in the study ranged between 20 and 81 years. The average age of the sample was 62 years. Forty four percent of the sample population were under the age of 65 years and the remaining 56% were over 65 years old. The majority of the sample was females (93%).

Details of ECT and consent process
All of the study population had bilateral ECT and more than half of them had ECT in the past. Eighty percent received ECT as inpatients, 10% as outpatients and the remaining 10% as both inpatients and outpatients.

Three quarters of the sample had ECT voluntarily (informally) and the remaining had it formally under the Mental Health Act.

Of those who had ECT under the Mental Health Act, nearly half had given consent to ECT treatment, a quarter did not have capacity to consent and the remaining could not remember whether they had given consent or not.

Consent

Three patients lacked capacity to consent for ECT treatment and hence 27 patients participated in the consent process.

The majority of the sample population agreed to have ECT, 45% of the sample could not remember whether they had signed a consent form or not and 15% felt pressurised to have ECT (Table 1 section A).

(click table for full-size image)

Information about ECT treatment

Around half of the sample confirmed that they had received some (either written or verbal) form of information about ECT.

The majority of the patients who received written information said that they had a good understanding of why they were having ECT, 58 % had a better understanding of the problems and side effects of the treatment (Table 1 section B).

Experience and feelings

Figure 2 depicts the feelings and experience of our study sample before having ECT.

Most patients described their experience with clinical staff as pleasant. Some of the unpleasant experiences reported were during the recovery period, anaesthetic injection and waiting for treatment (see Table 2).

Side-effects

One patient could not remember whether she had experienced any side-effects from ECT; hence we included information obtained from the remaining the 29 patients (see Figure 3).

Quality of care

Nearly two thirds of the patients responded positively to the overall quality of care that they had received (Table 1 section C).

Waiting time before treatment

When we looked at the waiting time for patients before receiving treatment, 43% of the patients waited for 15-30 minutes and only a small number (6%) of the sample waited for more than 30 minutes (figure 4).

Patients’ comments

• Was a positive experience; worked well for me; ECT staff were kind and friendly; able to go home after five months of inpatient stay as a result of ECT
• Treatment delayed on one occasion as case notes were not received in time
• Always looked after well
• Very impressed with quality of care
• Staff were very relaxed and friendly; scary imagination reduced by staff; atmosphere was very nice and caring
• Waiting time could be minimised, as it makes one nervous
• Felt respected
• Staff were really professional and friendly and explain things at your pace
• Oxygen mask was not comfortable; overall it was a pleasant experience
• More explanation on ECT treatment would be better
• Staff and doctors were very attentive; anything to prevent tongue biting would be good
• Make this treatment more available

Response to treatment

The majority of the sample felt that ECT was a useful procedure; it worked faster than medications and they would be happy to have it again if indicated. Less than half felt that it works for a short while and that the effects do not last longer (Table 3).

All of the patients who had ECT as outpatients were happy with the ECTAS standards followed for outpatient ECT treatment (Table 1 section D).

Carers’ views

Three patients had no carers and hence only 27 were included.

Nearly three-quarters of the carers said that the doctor consulted them before starting the treatment. The majority of them felt that ECT was beneficial and would support the family member to have ECT again. Most of them were happy with the overall support and help provided during ECT treatment. However, only half of the carers reported having received written information on ECT treatment (Table 1 section E).

Carers’ comments

• Always felt better after ECT treatment
• Wasn’t given enough information, wasn’t counted at all, need to be explained in layman’s term
• Having somewhere to park
• Very good treatment but comes with obvious side effects, no other alternative treatment worked
• Worried more about anaesthesia than ECT
• Had very good support and happy for my wife to have ECT again if she became unwell again
• Wished it had been started sooner
• Would have to be last resort, needed a lot of support afterwards due to memory impairment
• It was the best thing that my wife could have had at that time, a good decision by the doctors
• Would have preferred better communication from the ward staff and doctors between ECT treatment
• Whole team has been amazing, ECT was incredible, we were quite worried at first but the team assurances proved to correct, well done
• Information received was fine
• Felt like I wasn’t told anything, no one asked my opinion, more explanation about the risks and benefits needed
• Felt pressurised to agree with the treatment, as said she would be treated legally under MHA anyway.
• Had power of attorney for health matters, no one discussed with me before treatment

Discussion

More than half of our sample population were over 65 years, which reflects the current trend that ECT is more frequently prescribed for older patients.8 Most of the patients in our study group were females: depression is more common in women, which may explain the predominance of females in our study.9 Although ECT is indicated in various psychiatric disorders, it is commonly considered in severe depression.10

Memory impairment was experienced as the most common side effect; some of the carers’ views were that they would consider ECT only as a last resort due to memory impairment. All the patients in our study sample had bilateral ECT and that could explain the predominance of memory impairment as a side effect.11 Even though headache is a common non-cognitive side effect,12 our study sample rated it as the third most common after memory and confusion.

Most of the patients had given consent to ECT; however, more than half of them could not remember whether they had signed a consent form or received any information. This could be due to patients being quite unwell and lacking capacity to consent before the treatment. Therefore, we emphasise the importance of providing information before each treatment session. One of the unpleasant experiences of the treatment was the long waiting time before each treatment session, which increased patients’ anxiety and nervousness. However, we could not corroborate the findings with our records. It is important to mention that the time needed to complete the required paperwork and the practicalities before each treatment should be balanced against the actual waiting time.

Overall quality of care was rated as high and this could be attributed to the adherence to ECTAS standards. The response rate for ECT treatment in our study was similar to the evidence in the literature.6

Carers felt happy with the overall quality of the treatment. However, they were not fully satisfied with the information provided prior to treatment. In order to improve carers’ experience, staff should allocate more time to address carers’ questions and concerns and also provide them with a separate ECT information leaflet.

Limitations

We acknowledge that the sample size was small and the study could have been carried out in a larger population. We experienced great difficulty in locating patients who had treatment many months ago, especially when they were not under secondary care. This had an impact on the size of the study population. Patients who refused to take part in the study might be the ones who had very bad experiences. It would have been helpful to have their views, as we could have used that information to improve the experiences in a positive way.

Conclusion

It is clear from this study that the overall experience and attitude of patients and carers were positive. Although ECT was considered as a barbaric treatment in the past, we cannot ignore the fact that it was the only effective treatment due to the limited availability of alternate pharmacological and psychological interventions.

In the past, ECT was also used as a placebo,13,14 which had probably led to the controversy and the negative attitude in the media. However, it is important to emphasise that it was a potential lifesaver in many cases15. More treatment options are available now for psychiatric disorders but ECT is still considered as an effective treatment. The improvement and sophistication in ECT administration and the ECTAS7 standards help validating ECT as a less frightening experience for patients and carers.

Dr Guruvaiah is Consultant Psychiatrist at 2gether NHS Foundation Trust, Gloucester; Dr Naveed and Dr Veerasamy are Specialty doctors in General Adult Psychiatry, both at Worcestershire Health and Care NHS Trust; Dr Kudlur is a Consultant Psychiatrist, ECT lead at Worcestershire Health and Care NHS Trust, and Dr Chaudary and Dr Paraiso are CT2 in General Adult Psychiatry, both at Worcestershire Health and Care NHS Trust.

Conflicts of interest

No conflicts of interest were declared.

References

1. National Institute of Health and Care Excellence (NICE). Guidance on the use of Electroconvulsive Therapy. London: NICE, 2003. www.nice.org.uk/TA59
2. Bird JM. Effects of the media on attitudes to electric convulsion therapy. BMJ 1979:2(6189):526–7.
3. American Psychiatric Association (APA). The practice of electro-convulsive therapy: Recommendations for treatment, training and privileging. Washington: APA Press, 1990.
4. Chavan BS, Kumar S, Arun P, et al. ECT: Knowledge and attitude among patients and their relatives. Indian J Psychiatry 2006;48(1):34–8.
5. Salzman C. ECT, research and professional ambivalence. Am J Psychiatry 1998;155:1–2.
6. Freeman CP, Kendell RE. ECT: I. Patients’ experiences and attitudes. Br J Psychiatry 1980;137:8–16.
7. Royal College of Psychiatrists’ Centre for Quality Improvement. ECT Accreditation Service (ECTAS) Standards for the administration of ECT. Thirteenth Edition. London: Royal College of Psychiatrists, 2016.
8. Royal College of Psychiatrists. ECT Minimum Data set 2014–15 Activity Data Report – England, Wales, Northern Ireland & Republic of Ireland. London: Royal College of Psychiatrists, 2015.
9. Alonso J, Angermeyer MC, Bernert S, et al. Sampling and methods of the European Study of the Epidemiology of Mental Disorders (ESEMeD) project. Acta Psychiatr Scand Suppl 2004;(420):8–20.
10. Waite J, Easton A, eds. ECT Handbook: The use of ECT in the treatment of depression. Royal College of Psychiatrists, 2013:p126
11. Waite J, Easton A, eds. ECT Handbook: The use of ECT in the treatment of depression. Royal College of Psychiatrists, 2013:pp79–80.
12. Waite J, Easton A, eds. ECT Handbook: The use of ECT in the treatment of depression. Royal College of Psychiatrists, 2013:pp71–3.
13. Lambourn J, Gill D. A controlled comparison of simulated and real ECT. British Journal of Psychiatry 1978;133(6):514 – 19.
14. Johnstone EC, Deakin JFW, Lawler P, Frith CD, Stevens M, McPherson K, Crow TJ. The Northwick Park electroconvulsive therapy trial. The Lancet 1980;316(8208-8209):1317 – 1320
15. American Psychiatric Association. ECT a Potential Lifesaver in Comorbid PTSD, Major Depression. New York: Medscape, 2014. www.medscape.com/viewarticle/826168#vp_2

Patients’ experiences of and attitudes towards ECT

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