Working with Uncertainty

Managing Disclosing and Supporting a Diagnosis of Dementia

Julie Colville

Manchester Mental Health and Social Care Trust

July 2014

Contents

Difficulties in diagnosis Sharing the diagnosis Changes in perspective re sharing the

diagnosis Psychological factors in avoiding

disclosing/discussing diagnosis Reasons to share a diagnosis Dilemmas Best Practice Practice Development

Difficulties in Diagnosis

Making a diagnosis is difficult Dementia develops gradually Difficult to assess the date of onset Both GP and patient see as ‘normal

ageing’ Easy to overlook the early symptoms Other conditions mimicking dementia ‘10 minute ‘consultation Patients reluctance to visit the GP

Sharing the diagnosis

Advances in accuracy of diagnosing dementia arguably still ahead of decisions whether patients be informed or not – but now viewed as ‘fundamental’ to patient care (Pinner et al, 2003).

Patients ‘more demanding’ of ‘doctor/patient’ equality in relationship

Practices should be driven by respect for patient ‘autonomy & involvement’ in care – patients ‘demand’ more involvement (DOH, 1992)

Changes in Perspectives

Practice in disclosure changing rapidly due to More ‘memory clinics’ established who often

‘spearhead’ diagnosis Charitable Trusts/Foundations – e.g. Alzheimer’s

Society Improved education and raised public awareness Public disclosure reducing ‘stigma’ e.g.

‘celebrities’, Ronald Reagan, Terry Pratchett, Iris Murdoch

Changes in Perspectives

Practice in disclosure changing rapidly due to Extended life expectancy = increased

numbers Advancement in pharmacology results in

explicit need to engage in frank and open discussions with patient/family

New services tailored to need e.g. Admiral Nursing for carers/dementia advisors

However, still behind other conditions e.g. cancer diagnosis and care

Oncology Literature

•Gaps in knowledge can be addressed via analogies with the cancer literature•Oken (1961)– 90% of physicians had a policy of not revealing the diagnosisNovak et al(1979)- 93% shared the diagnosisThis has been attributed to:

increase in treatment optionsincrease in public awarenesstherapeutic optimismclimate of consumerismgrowing awareness of patient rights

•Johnson et al (2000)40% health care specialists regularly disclose the diagnosis20% see no benefits in disclosing diagnoses72.5% would wish to know themselves

Research Studies

•Maguire et al (1996) asked 100 carers accompanying people with DATShould the patient be told their diagnosis?

17% - Yes, 83% - NoWould they themselves want to be told their diagnosis?

71% - YesWould they make use of a predictive testy for dementia?

75% - YesWhat benefit knowing?42% - would allow them to make provisions for the future

Research Studies•Fairhill Guidelines (Post & Whitehouse, 1995)- person with mild dementia should be told their diagnosis.•Catrell & Jolley (1995) no evidence of extreme reactionsEvidence to support the beneficial effects as psychological wellbeing is not dependent on cure•Late 1990’s the AD Association (USA) & Alzheimer Scotland Action on Dementia recommended disclosure practices•Cheston (1996) & Sinason (1992) argue that sufferers are aware of their situation, particularly on an emotional level though they need more information to make sense of their experiences

Psychological Factors in Avoidance Disclosing Diagnosis

Therapeutic Nihilism Frustration when dealing with terminal conditions Feeling incompetent ‘Paternal’ protecting’ patients from ‘harsh reality’ of

diagnosis ‘Emotionally draining’ ‘Unleashing a distressing reaction’ fear patients and

families behavioural reactions and ability to contain Fear of destroying hope Fear of being blamed Defence against of own vulnerability/mortality

Other reasons for non disclosure

Perceived changes/reduction in patient’s cognition/ability to retain information can lead to ‘proxy’ discussions with family members, often without patient’s explicit consent – can cause family ‘rifts’ ‘keeping secrets’ causing carer distress

‘Paucity’ of resources to refer/signpost Resource allocation pressures

Reasons to Share a Diagnosis

Non disclosure is ‘questionable’ practice, disclosure now seen as ‘good practice‘

Ethical principle is to ‘do no harm’ ‘Right to know’ Can decrease uncertainty, anxiety & distress. Treatable distress & excess disability go

undetected Reduces patients’/families perception ‘going mad’

- biological rather than behavioural or negative personal characteristics

Prevents secrecy and potential family conflict

Reasons to Share a Diagnosis

• Reduces myths & stigma• Prevents inappropriate hope• Reduces uncertainty• Lack of honesty can lead to a lack of trust in

health professionals• Coping and adaptation unfacilitated – diagnosis

allows for appropriate psychological adjustment • Allows for an open and meaningful dialogue in

many areas• Can assist in access to dementia treatments• Allows participation in clinical trials

Reasons to Share a Diagnosis

• Can facilitate future planning• Enables risks e.g. driving safely to be addressed• Might aid patients/families acceptance of care

services/packages as a need• Remaining abilities underutilised - Makes best

use residual abilities e.g. better visual memory or the use of aids, calendars, cues etc (can’t do if not told)

• ‘Use it or Lose it’ suggest patients benefit from increased intellectual effort (can’t do if not told)

Research Studies

Pratt & Wilkinson (2001) studied the effects of being given a diagnosis of dementia – from the perspective of the PWD , was based on in-depth interviews with 24 people with dementiaSeven implications were identified:

The opportunities which knowing the diagnosis brings outweigh the limitationsInappropriate withholding of a diagnosis can cause great distressIt is important to guard against inappropriate disclosure to people with advanced dementiaPeople need support through the crises of receiving the diagnosisPeople with dementia find positive ways to cope with the diagnosisThere is a need for all practitioners to develop an understanding of people with dementia beyond a medical diagnosisLiving in a supportive social context is crucial to an individuals’ capacity to come to terms with a diagnosis and maintain independence

Dilemmas

Respect for patients autonomy vs. patients beneficence / non-maleficence

The rationale for non disclosure may be to ‘prevent harm’

As much as patients have the right to be informed, they may wish to ‘waive’ that right – however must be checked that there is no undue influence from another and/or emotional factors are not overwhelming e.g. fear and depression which can be addressed – they can then face the situation hopefully from ‘a position of strength’ (Drickamer, et al, 1992)

Dilemmas

‘On the one hand, patients obviously have a right to know. But even here we have a problem; given that memory impairment is a cardinal feature it is inevitable that the information will have to be imparted repeatedly. How many times are we to expect sufferers to endue this anguish?’ On the other hand, it is clearly not always necessarily in the best interests of people with dementia to be given their diagnosis. To convey such potentially devastating information, particularly to someone who has not asked to it, without careful consideration of the consequences, does not constitute integrity. The decision should not be taken without the widest possible consultation, to ensure that in affording people with dementia their rights, we are not doing them a disservice’. (Drickamer, et al, 1992)

Dilemmas

Many persons with a dementing condition in the early stages have a sense that they are losing their minds’ & seek to express their thoughts before they lose that capacity. Unless they are informed about what is happening to them & are given the chance to express themselves, they will lose that opportunity forever’. (Drickamer & Lachs, 1992)

‘We cannot avoid incurring distress but this is no reason to avoid disclosure, but we can support the person in managing the bad news’ (Cohen et al, 1984)

Dilemmas ‘Although disclosure may have a negative

emotional impact in the short term, most patients will adjust well in the long term’ Gratitude Peace of mind Positive attitudes Reduced anxiety Better adjustment (McIntosh, 1974)

Still relevant…Research suggest that although strong emotional reactions may occur, there is no evidence of long term psychological damage by disclosing (Bahro, 1995; Pinner et al 2003)

Best Practice Strategies - Oncology Literature

There is evidence in the cancer literature that the way the diagnosis is given can exacerbate or alleviate some of the distress and anxiety Disclosing the news abruptly has been found to increase its negative impact (Parkes, 1974)Patients also report particularly negative reactions as a result of:

news delivered over the telephonedoctors’ withholding informationclinicians’ failure to provide information about the availability for additional help

Patients also indicate that letters and tapes of the disclosure consultation are helpful and may increase their level of satisfaction with and retention of the information

Best Practice Strategies - Disclosure to be dealt with on a patient by patient basisConsideration of:

Stage of illnessUnderstanding and retention of informationHow well patients and carers/family appear to be coping along all stages

Diagnosis approached gradually with repetitionFrank & collaborative discussions where possibleProvide written informationSensitivity, flexibility & discretion – booking longer sessions? and/or information to be shared over several appointments

Best Practice Strategies -

Consideration of how the information should be shared – ideally patients and carers/families to be given same information - joint sessions where possible – get permission early person with dementia allowing sharing information with othersTimely referral to other agencies and support groups (get to know other services)Discuss ‘Living wills’ POA’ etc early on in the process – continue to monitor – before it’s too late Full support to be available to answer questions – if unable refer promptly to other sources help & supportDisclosure to be ongoing, dynamic and a fundamental part of care – dynamic and ongoing

Best Practice Strategies - Therapeutic and management plans to be explained and alternatives presentedEmphasis on preserved abilities and maintenance of social activityCrisis prevention work – e.g. emphasise respite care/need care packagesCounselling for feelings of lossMaximum treatment of co-morbid low mood/depression/anxietyGPs should target people with dementia for regular medical checkups – also opportunity for ‘catch up’. Avoid analogy/euphemisms, especially in later stages, confusing for cognitively impaired – be as frank and open as possible

Best Practice Strategies -

ASK YOURSELF:

Are you ‘blocking?If so why? - Lack of resources? Distress containmentAre you using ‘euphemisms:

Memory problems? Normal ageing?

Instead of:DementiaAlzheimer's Disease

Practice Development Staff trained in dementia Post Diagnostic Checklist might be helpful

List of patients with dementia Is the diagnosis flagged up clearly on their records? Always offer them double appointments Always check with carer/family member – can they come as

well, have they got concerns? GP/Practice Nursing Team -frequent medical check ups –

as we know, minor problems can quickly become serious e.g. UTI, chest infection, check vascular risk factors, medication compliance, other thing such as dehydration, weight, mental state e.g. depressed? - do they need other services e.g. SALT? Onward referral mental health or primary mental health services if appropriate – timely referral

Practice Development

Make sure carers health optimal – are they listed as a ‘carer’ ? and maybe consider priority appointments for them – check their physical and mental health – refer on if necessary

If not already done so, make sure carer is referred to social services for a carers assessment

Discussion had early on re legal issues POA etc before it is too late - and signposted?

Practice Development

Know other service e.g. Admiral Nurses for carers (accessed via gateway) They offer periodic Post Diagnostic Support Groups – plus valuable source help and information

List of local social service teams including PAT for aids and adaptations

Plenty literature and signposting throughout surgery

ReferencesBachman D , Wagner, MT (2000). How Do People with Alzheimer's Disease cope with their

diagnosis? Journal of Clinical Gerontology, 6, 309-313

Back, A., Arnold, R., Baile, W., Tulsky, J., & Fryer-Edwards. (2005). Approaching difficult communication tasks in oncology. CA- A Cancer Journal for Clinicians, 55, 164-177.

Buckman, R. (2005). Breaking bad news: the SPIKES strategy. Community Oncology, 2, 138-142.

Kaduszkievwicz, H., Bachman, C., & van den Busscle, H. (2008). Telling “the truth” in dementia- Do attitude and approach of general practitioners and specialists differ? Patient Education and Counselling, 70, 220-226.

Karnieli-Miller, O., Werner, P., Aharon-Peretz, J., and Eidelman, S. (2007). Dilemmas in the (un)veiling of the diagnosis of Alzheimer’s disease: Walking an ethical and professional tight rope. Patient Education and Counselling, 67, 307-314.

Lecouturier, J., Bamford, C., Hughes, J.C., Francis, J.J., Foy, R., Johnston, M, & Eccles, M. (2008). Appropriate disclosure of a diagnosis of dementia: Identifying the key behaviours of “best practice”. BMC Health Services Research, 8 (95).

Pinner G and Bouman WP. (2003). What should we tell people about dementia? Advances in Psychiatric treatment (2003), vol 5, 335-341

Web – plenty articles discussion on this topic and other sources e.g. Alzheimer's society

Journal Dementia Care