De factoimprisonment and covert medication use in general nursing homes for older people in South...

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(Aging 16: 326-330, 2004), © 2004, Editrice Kurtis Aging Clinical and Experimental Research 326 Aging Clin Exp Res, Vol. 16, No. 4 ABSTRACT. Background and aims: There is growing interest in ethical issues in nursing home care, in- cluding capacity to consent to residence and covert medication use. This study assessed capacity to consent to residence amongst a group of randomly selected res- idents of non-specialist UK nursing homes and exam- ined the prevalence of de facto imprisonment and covert medication. Methods: A cross-sectional preva- lence study amongst residents in randomly selected non-specialist nursing homes in South East England. 445 residents (97 men and 348 women) were ran- domly selected from 157 nursing homes. Results: 14% (64) of the residents interviewed lacked the ca- pacity to consent to residence. 6.1% (27) of residents were prevented from leaving but less than half of these lacked the mental capacity to consent to resi- dence and may be therefore, de facto, unlawfully im- prisoned. 4.7% (21) of residents on medication had re- ceived it covertly in the nursing home. Conclusions: A significant number of residents in the nursing homes studied did not appear to have the mental capacity to consent to being there, possibly in contravention of the Human Rights Act 1998. There appears to be a small but worrying prevalence of de facto imprisonment, and covert medication use in residents without se- vere cognitive impairment. (Aging Clin Exp Res 2004; 16: 326-330) © 2004, Editrice Kurtis INTRODUCTION The capacity of an individual to give or withhold con- sent lies at the centre of many ethical and legal issues in medical and nursing care. The UK Law Commission de- fines mental capacity to make a decision as: De facto imprisonment and covert medication use in general nursing homes for older people in South East England Alastair J.D. Macdonald 1 , Alice Roberts 1 , and Iain Carpenter 2 1 Section of Old Age Psychiatry, Department of Psychological Medicine, Institute of Psychiatry, 2 Department of Health Care of the Elderly, Guy’s, King’s and St. Thomas’ Schools of Medicine, Dentistry and Biomedical Sciences, King’s College, London, and Centre for Health Service Studies, University of Kent at Canterbury, UK a) comprehending and retaining information, b) believing it, and c) weighing it in the balance to arrive at a choice (1). At present, UK common law, under the rule of “best interests”, allows interventions without consent in those who lack capacity, and this was reluctantly upheld by the Law Lords when challenged in the Bournewood case (2). In nursing home care, this includes preventing resi- dents from leaving and administering medication without the patient’s knowledge (and thus, consent) – the practice of “covert medication”, recently endorsed by the main UK nursing regulatory authority (3). Approximately 140,000 older people reside in non- specialist nursing homes in England (4), of whom 103,600 (74%) are likely to have dementia (5). A specialist EMI (“Elderly Mentally Infirm”) home is one that provides specialist care for the mentally ill older people – pre- dominantly people with dementia. Mentally-ill older peo- ple are not supposed to be admitted to “non-EMI homes”. By definition, no resident of a “non-EMI” home is subject to any formal assessment or review of capacity to consent to residing in the homes, yet many homes lock their doors to prevent particular residents leaving. Article 5 of the Human Rights Act 1998 states that no-one should be deprived of his liberty save by the lawful detention of those with unsound mind, by which due process and a formal test of capacity is implied (6). The use of common law in nursing-home care is therefore open to legal challenge. Further, if the person has capacity to consent to staying in the home but is prevented from leaving then, de facto, the person is imprisoned. The UK Government White Paper on the new Mental Health Act (7) and the draft Mental Health Act (8) propose a new legal framework for all patients with enduring Key words: Capacity, dementia, ethics, legal, nursing homes, prevalence. Correspondence: A.J.D. Macdonald, MD, Academic Department, Ladywell House, 330 Lewisham High Street, London SE13 6JZ, Great Britain. E-mail: [email protected] Received February 3, 2003; accepted in revised form November 3, 2003.

Transcript of De factoimprisonment and covert medication use in general nursing homes for older people in South...

Page 1: De factoimprisonment and covert medication use in general nursing homes for older people in South East England

(Aging 16: 326-330, 2004),©2004, Editrice Kurtis Aging Clinical and Experimental Research

326 Aging Clin Exp Res, Vol. 16, No. 4

ABSTRACT. Background and aims: There is growinginterest in ethical issues in nursing home care, in-cluding capacity to consent to residence and covertmedication use. This study assessed capacity to consentto residence amongst a group of randomly selected res-idents of non-specialist UK nursing homes and exam-ined the prevalence of de facto imprisonment andcovert medication. Methods: A cross-sectional preva-lence study amongst residents in randomly selectednon-specialist nursing homes in South East England.445 residents (97 men and 348 women) were ran-domly selected from 157 nursing homes. Results:14% (64) of the residents interviewed lacked the ca-pacity to consent to residence. 6.1% (27) of residentswere prevented from leaving but less than half ofthese lacked the mental capacity to consent to resi-dence and may be therefore, de facto, unlawfully im-prisoned. 4.7% (21) of residents on medication had re-ceived it covertly in the nursing home. Conclusions: Asignificant number of residents in the nursing homesstudied did not appear to have the mental capacity toconsent to being there, possibly in contravention of theHuman Rights Act 1998. There appears to be a smallbut worrying prevalence of de facto imprisonment,and covert medication use in residents without se-vere cognitive impairment. (Aging Clin Exp Res 2004; 16: 326-330)©2004, Editrice Kurtis

INTRODUCTIONThe capacity of an individual to give or withhold con-

sent lies at the centre of many ethical and legal issues inmedical and nursing care. The UK Law Commission de-fines mental capacity to make a decision as:

De facto imprisonment and covert medication use ingeneral nursing homes for older people in South EastEnglandAlastair J.D. Macdonald1, Alice Roberts1, and Iain Carpenter2

1Section of Old Age Psychiatry, Department of Psychological Medicine, Institute of Psychiatry, 2Department of Health Care of the Elderly, Guy’s, King’s and St. Thomas’ Schools of Medicine, Dentistryand Biomedical Sciences, King’s College, London, and Centre for Health Service Studies, University ofKent at Canterbury, UK

a) comprehending and retaining information, b) believing it, and c) weighing it in the balance to arrive at a choice (1). At present, UK common law, under the rule of “best

interests”, allows interventions without consent in thosewho lack capacity, and this was reluctantly upheld by theLaw Lords when challenged in the Bournewood case(2). In nursing home care, this includes preventing resi-dents from leaving and administering medication withoutthe patient’s knowledge (and thus, consent) – the practiceof “covert medication”, recently endorsed by the main UKnursing regulatory authority (3).

Approximately 140,000 older people reside in non-specialist nursing homes in England (4), of whom103,600 (74%) are likely to have dementia (5). A specialistEMI (“Elderly Mentally Infirm”) home is one that providesspecialist care for the mentally ill older people – pre-dominantly people with dementia. Mentally-ill older peo-ple are not supposed to be admitted to “non-EMI homes”.By definition, no resident of a “non-EMI” home is subjectto any formal assessment or review of capacity to consentto residing in the homes, yet many homes lock theirdoors to prevent particular residents leaving. Article 5 ofthe Human Rights Act 1998 states that no-one should bedeprived of his liberty save by the lawful detention of thosewith unsound mind, by which due process and a formaltest of capacity is implied (6). The use of common law innursing-home care is therefore open to legal challenge.Further, if the person has capacity to consent to stayingin the home but is prevented from leaving then, de facto,the person is imprisoned.

The UK Government White Paper on the new MentalHealth Act (7) and the draft Mental Health Act (8) proposea new legal framework for all patients with enduring

Key words: Capacity, dementia, ethics, legal, nursing homes, prevalence.Correspondence: A.J.D. Macdonald, MD, Academic Department, Ladywell House, 330 Lewisham High Street, London SE13 6JZ, GreatBritain. E-mail: [email protected] February 3, 2003; accepted in revised form November 3, 2003.

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mental incapacity, including those in nursing homes. Itproposes that a “clinical supervisor” arranges a full as-sessment and a care plan, subject to periodic review,which would cover all aspects of care, including pre-venting them leaving or using covert medication.

We decided to estimate the prevalence of capacity toconsent to staying in non-EMI nursing-home residents inSE England, so that the impact of these proposals couldbe determined. As capacity to consent in UK law is pe-culiar to the issue on which consent is required, no stan-dardised measure is or could be available in this jurisdic-tion. The U.S. method proposed by Grisso and Appel-baum (9) is not fully applicable in the English jurisdiction,is impracticably demanding of time, and may have ahigh rate of designating lack of capacity in the UK (HotopfM., personal communication). We devised an algorithmwhich satisfies the main UK legal requirements (for in-stance, that capacity is not related to diagnosis or theopinion of others on the judgement of the resident), aswell as allowing future development as a tool for routineuse (Table 1). We also report the number of residents whoare physically prevented from leaving the home by nurs-ing staff on the basis of common law.

In the UK, nursing home residents are prescribed allmedications by their general practitioner. Administrationis by qualified nursing staff and, if covert, this may or maynot have been discussed with the prescriber at the time of

this study. Treloar et al. (10) reported that covert medi-cation was used in 71% of their convenience sample ofhomes and in-patient wards, but the numbers of residentsand patients being given covert medication is unknown.We decided to estimate the prevalence of this practice inour study.

METHODSFull details of the method and the measures used are

described elsewhere (5). Briefly, 445 residents were as-sessed after random selection from a population of 4243residents of 157 non-specialist nursing homes in theSouth East Region of the UK in 1999 and 2000. Levelsof cognitive impairment were assessed using the MMSE(11). A cross-sectional assessment of capacity to consentto residence was made using an algorithm (Table 1). It wasnot feasible to assess the capacity to consent to medica-tion, since the research nurses could not explain themedication adequately to the residents. The most seniormember of staff on duty was also interviewed, and the res-ident rated on the Behave-AD (12), distinguishing betweenpositive and negative behavioural problems (5). Restrictionof egress and covert medication were assessed by askingthe staff member questions, as shown in Table 2. Datawere analysed using SPSS© version 10. Ethical approvalwas given by the South Thames East Multi-Centre Ethicsof Research Committee.

Table 1 - Format of test of capacity to give/withhold consent to staying in the home.

Interviewer prompt Scoring instruction

1 Can you tell me what goes on here? Can adequately give a summary of his/her situation. GO TO 4Can you tell me how you got here? How long have you been here? Why did you come? Can you leave this place when you want? Are there any restrictions on your coming and going (apart from any health problems)? Are there any alternatives to you staying here?

2 IF RESIDENT DOES NOT UNDERSTAND Could not give summary of situation but seemed to understand explanation. WHERE HE/SHE IS, EXPLAIN BRIEFLY GO TO 4

3 Could not give summary of situation and could not understand explanation.LACKS CAPACITY: EXIT

4 Are there times when you want to go out and you can’t? Can weigh up advantages and disadvantages of staying in home: GO TO 6Why is that? What makes you stay on here? Are you reasonably content with being here? Would you much rather be somewhere else? IF SO Where? What would you say are the advantages and disadvantages (plus and minus points) about being here?

5 Could not weigh up advantages and disadvantages of staying in home:LACKS CAPACITY: EXIT

6 IF RESIDENT ORIGINALLY UNDERSTOOD HAS CAPACITY: EXITWHERE HE/SHE IS AND NEEDED NO EXPLANATION

7 IF RESIDENT ORIGINALLY DID NOT UNDERSTAND Cannot recall general principles of current situation. WHERE HE/SHE IS AND NEEDED AN EXPLANATION: DOES NOT HAVE CAPACITY: EXITCheck can recall general principles of his/her current situation

8 Can recall general principles of current situation: HAS CAPACITY: EXIT

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RESULTS445 residents were assessed after random selection

from a population of 4243 residents of 157 non-specialistnursing homes in the South East Region of the UK in1999/2000.

Capacity to give or withhold consent to staying inthe home

Sixty-four (14%) of the residents interviewed appearedto lack the capacity to consent to residence. Table 3compares this group with those with capacity. Most of theincapacitated residents (96.9%) had severe cognitive im-pairment. There was no difference in age or length of res-idence between the groups, but there was a tendency forthose lacking capacity to be receiving more antipsychot-ic medication (mean 19.4 daily milligram equivalents ofChlorpromazine versus 7.7 milligram equivalents), to begiven covert medication (13% vs 4%), to be taking regu-lar antipsychotics (30% vs 11%), and to be less likely to betaking antidepressants (14% vs 27%) or to have had an as-sessment by a mental health team in the preceding 3months (4.7% vs 8.7%). Residents lacking capacity alsoshowed more positive behavioural problems (mean num-

ber 5.8 [SD 6.9] vs 3.0 [SD 4.5] F 17.9 p<0.001) but notnegative behaviours. 40.6% of those lacking capacitywere not acknowledged by the nurse as having dementia;part of a general problem of recognition of dementiawhich we report elsewhere (13).

Prevention of egressTable 4 shows the characteristics of the 6.1% (27) of

all residents who were prevented from leaving. The ma-jority (59.3%) appeared to have capacity to consent to res-idence and 3 (11.1%) of them also had minimal or nocognitive impairment. There was an association betweenprevention of egress and cognitive impairment (for eachpoint increase in MMSE OR 0.92, 95% CI 0.85-0.98)and behavioural problems (for each point increase inpositive behaviour score OR 1.12, 95% CI 1.06-1.18)and a tendency for those prevented from leaving to be tak-ing regular antipsychotics and to be on higher doses. Ofthe homes visited, 23% locked the doors to preventegress, and only 10% used combination or other “baffle”locks on the inside. In only 2 homes visited were we toldof the use of tipping or enclosed chairs (e.g., with atable fixed across the front of them to prevent the personfrom rising), used to prevent residents leaving.

Covert medication98.2% of all residents were taking one or more pre-

scribed medications, and of these 63.3% were taking apsychotropic. In 68 (43%) of homes we visited, we weretold that covert medication administration sometimes oc-curred. There was no relationship between home size ortype of ownership and this policy. 21 residents (4.7% ofthose in the study on any medication), all female, were re-ported as having been given medication covertly. (A fur-ther resident was thus reported, but was not taking anymedication at the time of the survey, so is not included fur-ther). Their characteristics are shown in Table 5. Elevenresidents were on psychotropics (6 regular antipsychotic,

Table 2 - Questions asked of nursing staff about covert medicationand prevention of egress.

1. At times residents refuse to accept medication which would be ofmuch benefit to them. How do you feel in principle about givingthe resident their medication without them knowing (e.g., intheir food or drink)?

2. Is it ever necessary to do this in this nursing home?3. Has it ever been necessary to do that with this resident?4. At times, residents who may be vulnerable may attempt to leave

the nursing home. How do you feel in principle about preventinga resident from leaving?

5. Is it ever necessary to do this in this nursing home?6. Is it ever necessary to prevent this resident from leaving?

Table 3 - Characteristics of residents with and without capacity to consent to staying in the home (n=442; not assessed in 3 residents).

Capacity Lacked capacityn=378 n=64

% female (95% CI) 93.8 (87.6-99.8) 75.4 (71.1-79.8)Mean age (95% CI) 84.8 (84.2-85.5) 86.6 (84.7-88.5)Mean Barthel Scores (95% CI) 9.23 (8.64-9.81) 4.36 (3.29-5.43)Mean Barthel Scores for mobility (95% CI) 1.36 (1.22-1.50) 0.86 (0.57-1.15)% prevented from leaving (95% CIs) 4 (2-6) 17 (8-27)% scoring above 23 on MMSE (95% CI) 40.7 (35.8-45.7) 0% scoring 16-23 on MMSE (95% CI) 31.2 (26.5-35.9) 3.1 (–1.3-7.5)% scoring below 16 on MMSE (95% CI) 28.0 (23.5-32.6) 96.9 (92.5-100)Mean (median) no. positive behavioural problems [SD] 3.0 (1) [SD 4.5] 5.8 (6) [SD 6.9]% taking regular antipsychotic 11 (8-15) 30 (18-41)Mean mg equivalents of chlorpromazine daily (95% CI) 7.6 (4.7-10.7) 19.4 (7.5-31.3)

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4 benzodiazepine, 2 antidepressant – some on morethan one type of psychotropic), whilst the remaining 10were receiving covert medication for physical conditionsonly. Of those receiving covert medication, 14 (66.7%)had severe cognitive impairment, 3 (14.3%) had moder-ate cognitive impairment and 4 (19%) had mild or no cog-nitive impairment (MMSE scores of 24 or above). The lat-ter (3 taking psychotropics, 1 non-psychotropics) all hadcapacity to consent to stay in the home.

DISCUSSION The assessment of capacity used in this study was

limited by the research nurses’ ability to judge the resi-dents’ reasoning in relation to their residence, since thenurses themselves could not know many details of why theindividuals had been admitted to or kept in the home. Wehave, as yet, no data on the validity or reliability of themethod used, so these results must be treated with cau-

tion. However, this is the first systematic survey of capacityto consent in a probability sample of older people innursing homes and, if these results are generalisable toEngland, they suggest that 19,600 residents in non-spe-cialist nursing homes lack the capacity to give or withholdconsent to residence. Under the UK proposed plans, thisnumber will therefore require formal assessment andcare. To this number must be added most residents in spe-cialist EMI nursing and residential homes, and as yet un-known numbers in non-specialist residential homes andhospital wards. The case-load of an old age psychiatricteam is approximately 250, so a conservative estimatewould be that 70 more psychiatric teams will be neededto provide assessment and review of these.

We think it is unlikely that many of the residents we in-terviewed had ever had a formal assessment of capacityto consent to be admitted or stay in the home, none ofwhich were registered for people with dementia. In order

Table 4 - Characteristics of residents who did and did not have to be individually prevented from leaving the home (n=445).

Had been prevented Had not been prevented from leaving home from leaving home

n=27 n=418

Mean age (95% CI) 85.9 (82.6-89.1) 85.1 (84.4-85.7)Mean Barthel Scores (95% CI) 9.56 (7.35-11.76) 8.47 (7.90-9.03)Mean Barthel Scores for Mobility (95% CI) 2.07 (1.60-2.55) 1.24 (1.11-1.37)% having capacity to consent to staying in home (95% CI) 59.3 (39.5-79.1) 87.3 (84.0-90.5)% having ever been given medication covertly (95% CI) 22 (5-39) 4 (2-6)% scoring above 23 on MMSE (95% CI) 11.1 (–1.6-23.8) 36.1 (31.5-48.8)% scoring 16-23 on MMSE (95% CI) 14.8 (0.5-29.1) 28.5 (24.1-32.8)% scoring below 16 on MMSE (95% CI) 74.1 (56.4-91.7) 35.4 (30.8-40.0)Mean (median) no. positive behavioural problems [SD] 8.4 (6) [7.2] 3.1 (1) [4.6]% taking regular antipsychotic (95% CI) 37 (18-57) 12 (9-16)Mean mg equivalents of chlorpromazine daily (95% CI) 24.1 (3.9-44.4) 8.3 (5.3-11.4)

Table 5 - Characteristics of residents who did or did not have covert medication (n=443).

Had covert Did not have covertmedication medication

n=21 n=422

Mean age (95% CI) 86.6 (83.1-90.1) 85.0 (84.3-85.7)Mean Barthel Scores (95% CI) 7.23 (4.66-9.79) 8.58 (8.02-9.14)Mean Barthel Scores for Mobility (95% CI) 0.86 (0.33-1.38) 1.31 (1.18-1.43)% having capacity to consent to staying in home (95% CI) 61.9 (39.2-84.6) 86.6 (83.4-89.9)% having ever been prevented from leaving (95% CI) 29 (8-50) 5 (3-7)% scoring above 23 on MMSE (95% CI) 23.8 (3.9-43.7) 35.1 (30.5-39.6)% scoring 16-23 on MMSE (95% CI) 9.5 (–4.2-23.2) 28.4 (24.1-32.8)% scoring below 16 on MMSE (95% CI) 66.7 (44.7-88.7) 36.5 (31.9-41.1)Mean (median) no. positive behavioural problems [SD] 4.81 (2) [6.4] 3.40 (1) [4.9]% taking regular antipsychotic (95% CI) 29 (8-50) 13 (10-17)Mean mg equivalents of chlorpromazine daily (95% CI) 19.1 (–2.7-40.9) 8.9 (5.8-11.9)

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to determine which of the 75% of residents with de-mentia lack capacity to consent, it is necessary for non-psychiatric staff to be able to 1) identify those with de-mentia, and 2) assess the capacity of those identified, andit is hard to see that this is feasible at all, even with a briefassessment of capacity like the one used here, given thepresent crisis in training and staffing in the residential andnursing homes sector.

More than half of the residents who were sometimesprevented from leaving the home seemed to have the ca-pacity to make decisions regarding their residence and werethus, de facto, imprisoned. The term is here confined on-ly to those who have capacity, whom it is illegal in the UKto restrict even if it is in their best interests. The numbersare small, and perhaps some of these had fluctuating ca-pacity. However, we found three residents who appearedto have capacity, had little or no cognitive impairment, andyet were sometimes prevented from leaving. This problemwould be minimised if there was a much more systematicapproach to resident assessment, as proposed by theUK Single Assessment Process (14) but, even here, thereis very little guidance on the assessment of capacity to con-sent itself, perhaps part of a general avoidance of the issueof dementia in care homes (15).

The practice of covert medication was admitted inless than half the homes we visited. This is less thanthose found by Treloar et al. (10) who visited homesknown personally to them, included wards for people withpsychiatric problems, and in which they sometimes hadconflicting reports. We found only 4.7% of residents onany medication were sometimes receiving them covertly.Only half of these were being given psychotropics, so itmay be argued that other residents were receiving life-sav-ing medication for physical disorders. We could find noevidence of widespread covert use of psychotropic med-ication, but there appears to be a small number of cog-nitively intact residents who are being given medicationwithout their knowledge.

CONCLUSIONSIn the non-specialist nursing homes studied, there are

an important group of residents with dementia who ap-pear to lack the capacity to consent to being there. Thestudy suggests a small but worrying prevalence of defacto imprisonment. The proposed UK new MentalHealth Act may provide for much-needed safeguards forpeople in long-term care, but the resource implications arevery great, particularly in implications for training in de-mentia care and assessment. Covert medication admin-istration was unusual, and was as often for physical med-

ications as for psychotropics, but there was, again, asmall but worrying number of cognitively intact residentsreceiving covert psychotropics in these non-specialisthomes.

ACKNOWLEDGEMENTSClare Jones and Johanna Turner carried out resident assessments,

and Mona Patel and Jill Denham administered the project. We aregrateful to Rosemary Blenkinsopp and Barbara Beats for contributionto the design, to the Inspection and Registration Departments of theHealth Authorities covered, and to the managers, staff and residents ofthe homes that participated. This work was undertaken by AM, who re-ceived funding from the NHS Executive London, Research & Devel-opment Programme. The views expressed in the publication arethose of the authors and not necessarily those of the NHS Executive orthe Department of Health.

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