end of life planning seminar ballarat 9 ......planning for the end of life for people with dementia:...

WELCOMEEND OF LIFE PLANNING SEMINAR

BALLARAT

9 OCTOBER 2012

PROFESSOR COLLEEN

CARTWRIGHTDirector, ASLaRC Aged Services Unit

Southern Cross University

Planning for the End of Lifefor People with Dementia: Part 1

Presentation for Alzheimer’s Australia (Victoria)

Professor Colleen Cartwright, Director ASLaRC Aged Services Unit


Adjunct Professor, UNSW Medical FacultyRural Clinical School

Context

• Better living conditions/health care have led to increased longevity – this is a success story, and it has rightly been celebrated as such.

• In addition, rapid technological development has allowed people who would have previously died to be kept alive for long periods of time, often through the use of such things as ventilators and PEG tubes.

• But• These successes have led to practical, legal & ethical

issues, in particular around end-of-life care and extending the dying process, including for the increasing numbers of people with dementia.

Fears and Concerns in the General CommunityCarers’ Stories

• Loved one “left hooked up to machines until the very end. We couldn’t even get close enough to give him a hug and say goodbye”.

• “Mum always said she wouldn’t want to be resuscitated if her heart stopped, but they wouldn’t listen”.

• (Wife) “First of all he was stubborn when he was in hospital; he wouldn’t eat - he was just starving himself. They couldn’t get him to eat … so they had to force-feed him. They put a tube down his nose and then they had to tie him in the bed, because he kept pulling it out. He just didn’t want it”.

Community Concerns in Terminal Illness: Rank Order

FACTORS Q1 Q2 NTLoss of Mental Faculties 1 1 1Loss of Control 2 2 2Loss of Independence * 3 3Burden on Family * 4 4Loss of Dignity 4 5 5Leaving Loved Ones 5 * 6Protracted Dying * * 7Extreme /Physical Pain 3 6 8Death Itself 9 9 10/10

After a Diagnosis of DementiaAdvance Planning for Expected Changes

• A diagnosis of dementia for you or someone you care for may cause a range of emotions, including grief, disbelief, anger, shock or even relief.

• Knowing the diagnosis at an early stage allows time for setting up good supports and planning for expected changes as the disease progresses.

• It also means the person with dementia can participate in the planning process and ensure that his/her wishes for end-of-life care are known and documented.

Advance Care Planning

Is a process that allows a person to make and communicate – in advance – decisions about their health care (including medical and dental treatment) for a future time when they have lost capacity.

Ideally it involves a discussion between the person, their health care provider and their carer/ family/ friends, about their values, beliefs and views about end-of-life care.

For it to be fully effective it also needs to include recording those decisions.

Legislative Basis for Advance Planning in Victoria

Instruments (Enduring Powers of Attorney) Act

2003

The Guardianship Act 1986

Medical Treatment Act 1998

Planning Ahead – Legal Mechanisms in Victoria

• Advance Planning helps to address fears and concerns in relation to: Financial matters, through – Appointing an Enduring Power of Attorney.

Personal/Health Care matters, through – Writing an Advance Directive (Refusal of Treatment

Certificate/Statement of Choices)– Appointing an Enduring Power of Attorney (Medical

Treatment).– Appointing an Enduring Guardian.

Advance Directives• There are two forms of Advance Directive in Victoria:• 1. Refusal of Treatment Certificate (legally binding): this is a

written document which allows a person to refuse medical treatment for a current medical condition.

• 2. Statement of Choices (legally binding under Common Law): this is more truly an Advance Directive as it allows a person to say what they do and do not want for any future conditions

– Both extend the existing rights of a competent person to a future time when they may not be competent.

– Neither are euthanasia, as they only relate to actions which a person could legally consent to for themselves if they were competent to speak.

– Both only come into effect when the person loses decision-making capacity.

Refusal of Treatment Certificate

A Refusal of Treatment Certificate must be in the form of Schedule 1 Medical Treatment Act 1988

– Must be witnessed by medical practitioner and one other person together.

Copies of Refusal of Treatment Certificate should be: – placed with the patient’s medical records kept by the hospital

or care facility; – given to the CEO of the hospital or care facility; – given to the principal registrar of the Tribunal within 7 days

after the certificate is completed.

Cancellation of Refusal of Treatment Certificate must be witnessed, using Schedule 1 Medical Treatment Act 1988

Benefits of Advance Directives

• Gives control back to patient.

• Ensures patient’s wishes are known - patient’s own words.

• Assists health care provider with decision-making.

• Relieves family stress at time of trauma.

• Gives security in relation to future events (allows person to live well now by taking away fear of end stage of life).

Barriers to Use of Advance DirectivesBarrier Cty

%HPs%

Don’t know how to 61 88

Don’t know enough about them

60 91

Prefer to leave decision to doctor

37 63

Don’t like to think about end-of-life issues

33 75

Prefer to leave decision to family

29 69

Enduring Power of Attorney (Medical Treatment)

• A competent person aged 18 or over can appoint a medical Agent (and an alternate medical Agent) to make decisions about medicaland dental treatment on their behalf, in case they lose the capacity to make own decisions.

• Medical Agent: – Must be at least 18 years old; is usually a trusted relative or

friend.• Appointment made using authorised form: Schedule 2

Medical Treatment Act 1988– Can complete RTC refusing treatment for current condition only,

on behalf of the person who appointed them• Authorised form: Schedule 3 Medical Treatment Act 1988

• Requires 2 witnesses; 1 must be authorised witness* e.g. GP, lawyer, JP (*list of non-fee-charging witnesses available).

Enduring Guardianship -1

• A competent person aged 18 or over can appoint an Enduring Guardian (EG) to make personal & lifestyle decisions and/or decisions about medical and dental treatment on their behalf, incase they lose the capacity to make own decisions.

• EG must be at least 18 years old and is usually a trusted relative or friend.

• EG cannot be a person who, at the time of appointment is directly or indirectly responsible for: – The care or treatment of the person on a professional basis; or – The provision of accommodation services or support services

for daily living on a professional basis.

Enduring Guardianship - 2

• A person can appoint 1 EG.– Can also appoint an alternative EG in case the original EG dies

or becomes incapacitated.

• EG must agree to the appointment, should understand the appointer's wishes and be prepared to carry them out.

– Appointment must be in writing using authorised form: Schedule 4, form 1 Guardianship and Administration Act 1986

– Form must be signed by appointer, EG and 2 witnesses (1 must be authorised witness* e.g. solicitor, JP, GP (*list of non-fee-charging witnesses available). The witnesses must sign in the presence of the appointer and in the presence of each other.

What if there is no RCT, Agent or EG?

• ‘Person Responsible’ is the first of the following reasonably available adults of full legal capacity willing to make treatment decisions: – The patient’s spouse/domestic partner (incl. de facto or same-sex

spouse, provided the relationship is close and continuing)– The patient’s primary non-professional carer*– The patient’s nearest relative

• Adult son or daughter; father or mother; brother or sister; grandfather or grandmother; grandson or granddaughter; uncle or aunt; nephew or niece

(Not Next-of-Kin and may not be the person the patient would have chosen to make their decisions).

* For a person in a residential aged care facility, (nursing home), the “carer” is not a staff member at the facility. Usually it would bewhoever was the carer before the person went to the facility.

When Does a Person Have Capacity to Make A Decision (inc. write an AD, appoint a MA or an EG?)

• Person is presumed to have capacity unless proven otherwise (a diagnosis of dementia does not immediately mean the person has lost capacity).

• Person must understand the nature and the effect of the decision to be made – (case study).– Complete and sign the document without any coercion,

pressure, or influence by others.

• Person must be able to communicate their decision in some way - not necessarily by speaking or writing -body language may be adequate, e.g. nodding/ shaking head (case study).

Incapacity is Not:

• Ignorance

• Eccentricity, cultural diversity or having different ethical views

• Communication failure

• Bad decisions

• Disagreeing with health care provider

Priority for Decision-Making for Personal and Health Matters in Victoria

• Refusal of Treatment certificate for current medical condition or Statement of Choices

• Guardian appointed by the Victorian Civil and Administrative Tribunal

• Medical Agent appointed by the person

• Enduring Guardian appointed by the person

• Person Responsible

• Application to Victorian Civil and Administrative Tribunal

Where Should a RTC and/or Statement of Choices be Kept?

• Copy in GP file.

• Copy with Medical Agent and/or Enduring Guardian.

• Copy accessible at home.

• On admission to hospital or residential aged care facility, copy should be placed in patient record, to be available for subsequent admissions/guide care plans.

• (Old lady – in plastic sleeve, “blue-tacked” to fridge).

• Use wallet card.

Carers • A major stress among carers of people with dementia is not

knowing what is the right thing to do and being afraid of doing the wrong thing.

• Some of the stress can be relieved with appropriate advance care planning.

• People with mild-moderate dementia should be supported to complete an AD and to appoint a Medical Agent and/or an Enduring Guardian.

• People with advanced dementia who have not appointed a Medical Agent or EG may need to rely on the Person Responsible (spouse, carer, or family) to make health and lifestyle decisions on their behalf (Substitute Judgement, not Best Interests).

Confusion About what is/is not Euthanasia

• Many problems stem from confusion over what is, or is not, euthanasia. This leads to:

– Inadequate pain management

– Inappropriate use of medical technology

– Fear among health professionals of legal consequences of care provision

– Poor doctor-patient communication

– Disillusioned patients/families/carers

Common Beliefs

• Some commonly held beliefs are that euthanasia includes:

(a) giving increasing amounts of needed pain relief which may also have the effect of shortening the person's life; or

(b) respecting a patient's right to refuse further treatment; or

(c) withholding or withdrawing life support systems that have ceased to be effective or that will provide no real benefit to the patient

None of these is euthanasia

Definitions of Euthanasia

• The World Medical Association defines euthanasia as: the deliberate ending of a person's life at his or her request, using drugs to accelerate death.

• Definition used in studies in Qld, NT & Europe:– Euthanasia is a deliberate act intended to cause the death

of the patient, at that patient’s request, for what he or she sees as being in his/her best interests (i.e. Active Voluntary Euthanasia – AVE).

Pain Relief: What does the law allow?

• Right to Adequate Pain Relief– Every person (competent or not) has the right to adequate

control of pain and other symptoms, even at the risk of hastening death.

– People with dementia are often denied adequate pain relief.

• Terminal or Palliative Sedation– Use of sedative drugs to induce unconsciousness in terminally

ill patients in order to relieve suffering, including anxiety, when other attempts at relief have failed. Includes withholding or withdrawing artificial nutrition/ hydration.

(Note: Neither of these is euthanasia)

Giving Pain Relief Which May Also Shorten the Patient's Life

• Often referred to as "the doctrine of double effect“ -primary intention is to relieve pain, secondary, unintentional effect may be the hastening of the person's death.

• Accepted by most religious and medical groups, including those who strongly oppose euthanasia.

• Not giving adequate pain treatment when needed may shorten life: patient may suffer complications such as life-threatening cramps or severe respiratory problems if severe pain is left untreated.

Refusal of Treatment: What does the law allow? • Refusal of treatment: a person may refuse any treatment, or

request treatment to be withdrawn, even life-saving treatment if they have the capacity to do so, or through an RCT Statement of choices, or via a Medical Agent.

• Refusal of CPR: <20% of people who have a cardiac arrest in hospital survive to discharge and of those who do, many are leftin a worse condition than previously. For older, very ill patients it is about 5%

• Refusal of artificial provision of food or fluids: (e.g., through a tube). Person themselves can also refuse “natural”provision of food or fluid, but MA or EG cannot do so.

• Refusal of antibiotics: The use of antibiotics does not necessarily improve the comfort of patients with advanced dementia (but may be required to reduce fever).

Withholding/Withdrawing Futile Life-Supports Systems

• Used to be called "passive euthanasia”; general agreement that that term is unhelpful - it can lead to the inappropriate continued use of invasive technology.

• Often it is not prolonging life, it is merely prolonging the dying process.

• Removal of futile treatment is good medical practice. However, no definition of futility in law; generally agreed, when burden outweighs benefits – but “burden” and “benefit” should be from patient’s viewpoint.

Where Can You Get Advance Care Planning Forms?

• The Refusal of Treatment Certificate, Enduring Power of Attorney (Medical Treatment) and Enduring Guardian forms can be freely downloaded from the Victorian Office of the Public Advocate http://www.publicadvocate.vic.gov.au

• Call Office of the Public Advocate 1300 309 337

• Statement of Choices form is available on the Respecting Patient Choices websitewww.respectingpatientchoices.org.au

DR ROB MOSSNeuropsychologist,

Ballarat Health Services

33

As plain as the nose on your face: A neuropsychologist’s approach to decision making

capacity.

Dr Robert Moss MAPS [email protected]

09 October 2012

34

A neuropsychologists

approach

Neuropsychology- Working brains

35


approach

The Working Brain

3 Higher Cortical Systems• Arousal• Reception and Storage of Information• Self-regulation – planning, execution and

monitoring of behaviour

36


approach

The Working BrainArousal

37


approach

The Working BrainPerception and Memory

38


approach

The Working BrainSelf-regulation

39


approach

The Working BrainHemispheric lateralisation

40


approach

The Working Brain - Functions

41


approach

Assessment of the Working Brain

Four pillars of neuropsychological assessment• Behavioural observations• Client report• Informant report• Neuropsychometric assessment

42


approach

Assessment of the Working Brain

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Legal approaches

Decision Making Capacity - What is it?

U Understanding – Understand what the specific facts are.

A Appreciation – Recognition of the information as relevant

R Reasoning – The ability to evaluate specific options.

E Expression – The ability to communicate a specific choice

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Ethical Issues

Decision Making Capacity

Human values and rights

Cultural values

Individual values

Organizational and service values

Professional values

Individual service providers’ values

45

General approaches

Assessment of Decision Making CapacityStructured Interview

(e.g. Aid to Capacity Evaluation: Six Steps)

Overall Cognitive functioning

(e.g. Standardised Mini-Mental Status Examination -SMMSE)

Expert opinion

46


approach

Decision Making CapacityNeuropsychological training

Little formal preparation

Mostly ‘On the job training’

Clinical Practice

Types of referrals - usually pressured

Guidelines – professional & legal

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approach

An early framework- Four domains

• Cognitive security- expression of needs• Cognitive safety – recognition and

response to environmental threats• Simple problem-solving• Complex problem solving• Intact/Fragile/Not Intact

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approach

Domains for capacity assessment - Darzins et al.

(2000) Mainly Cognitive Mainly FunctionalMaking a will or POA

Advance directives

Property & finance

Health care

Personal & daily care

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General approaches

Assessment of Decision Making CapacitySMMSE Scores and Expert Opinion - Etchell et al. (1999).

SMMSE range Expert Opinion Incapable

Expert Opinion Capable

<16 25 3

17-23 9 24

>24 1 36

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approach

Current approach - Referrals

Three main areas of involvement• Subtle but significant changes• Conflicting views- Diagnosis & Severity• Intervention and support

• Client/patient• Family & carers• Team• Services

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approach

Current approach - ConsultClarify the referral

• Explore information already to hand• Educate- DMC in a health context is a

medical decisionIdentify primary issue behaviourally

• Confidence• Conflict• Management• Reframe referral if needed as intervention

52


approach

Current approach - InterventionFacilitate communicationEncourage flexibilityEstablish resources (facilitators & barriers to

autonomy)• Client strengths & weakness

• Cognition• Behaviour• Activities and Interests• Health needs

• Family & social supports• Team & services available

53


approach

Current approach - InterventionCommunication - Client

• Strong non-verbal communication• Monitoring and reduction of arousal• Use of positive activities and interests to

engage client• Identifying and addressing client-based

issues and concerns• Enrol client in supported problem-solving• Confirm outcomes/decisions/priorities

54


approach

Current approach - InterventionCommunication – Family & Team

• Strong non-verbal communication• Monitoring and reduction of arousal• Identifying and addressing issues and

concerns• Education re strengths & weaknesses• Problem-solving around issues• Confirm outcomes/decisions/priorities

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Thank you.My pen is more intelligent than I amAlbert Einstein

56

A neuropsychologists approach to

decision making capacity

References

Australian Psychological Society (2010). Submission to The Victorian Law Reform’s Commission Guardianship and Administration Act Review. Author: Melbourne.

Australian Psychological Society & The Office of The Public Advocate (2010). Guidelines for the preparation of neuropsychological reports for The Guardianship List of The Victorian Civil Appeals Tribunal. Author: Melbourne.

Clarke, A. M. & Davey, M. F. (2004). Communication and decision making among residents with dementia. Geriaction, 22 (3), 17-24.

Darzins P, Molloy DW, Strang D. (2000). Who can decide? The six step capacity assessment process. Adelaide: Memory Australia Press.

Etchells et al., (1999). Assessment of Patient Capacity to Consent to Treatment. Journal of General and Internal Medicine, 14, 27-34.

Livingston, G., et al. (2010). Making decisions for people with dementia who lack capacity: qualitative study of family carers in UK. BMJ2010:341:c4184doi:10.1136/bmj.c4184 Accessed 21.09.2012.

Luria, A. R., (1976). The Working Brain, Basic Books, London.McGilchrist, I. (2009). The Master and His Emissary: The Divided Brain and the

Making of The Western World. London: Yale University Press.

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A neuropsychologists approach to

decision making capacity

References

Manes, F. et al., (2011). Decision-making in fronto-temporal dementia: Clinical, theoretical and legal implications. Dementia and Geriatric Cognitive Disorders, 32(1), 11-17.

Marson, D.C., et al. (2000). Consistency of Physicians’ legal standard and personal judgements of capacity to consent in mild Alzheimer’s Disease. Journal of American Geriatrics Society 48, 911-918.

Mitty, E.L., (2012). Decision-Making and Dementia. Hartford Institute for Geriatric Nursing. New York. Accessed on 21.09.2012 from http://consultgerirn.org/uploads/File/trythis/try_this_d9.pdf

Moye, J., et al. (2007). A Conceptual Model and Assessment Template for Capacity Evaluation in Adult Guardianship. The Gerontologist,47 (5) 591- 603.

Moye, J., et al. (2006). Neuropsychological Predictors of Decision-Making Capacity over 9 Months in Mild to Moderate Dementia. Journal of General and Internal Medicine, 21, 78-83

Mullaly, E., Kinsella, G. et al. (2007). Assessment of capacity to make decisions: An exploration of common practices among Australian neuropsychologists. Australian Psychologist, 42(3), 178-186.

Sullivan, K. (2004). Neuropsychological assessment of mental capacity. Neuropsychology Review, 14, 131-142.

ASSOCIATE PROFESSOR MARK YATES

Geriatrician, Ballarat Health Services

Living with Dementia Living with Dementia and Dyingand Dying

Associate Professor Mark YatesAssociate Professor Mark YatesGeriatricianGeriatrician

Director or Clinical Studies Ballarat Clinical School Director or Clinical Studies Ballarat Clinical School Deakin UniversityDeakin University

Ballarat Health ServicesBallarat Health Services

Living with Dementia and DyingLiving with Dementia and Dying

SummarySummary The Dementia journey The Dementia journey –– considerations for considerations for

planningplanning Personal perspective on decisions at the End Personal perspective on decisions at the End

of Lifeof Life Medical Futility and dementiaMedical Futility and dementia Hospitals and Dementia Hospitals and Dementia –– the Dementia Care the Dementia Care

in Hospital Programin Hospital Program Advance Care Planning Advance Care Planning –– AMA policyAMA policy Concluding Comments Concluding Comments –– few answers few answers

Living with Dementia and DyingLiving with Dementia and Dying

DementiaDementia IS a term to describe memory loss and IS a term to describe memory loss and

impairment of at least one other cognitive impairment of at least one other cognitive domaindomain

is NOT a diagnosisis NOT a diagnosis does NOT indicate severity or level of functiondoes NOT indicate severity or level of function does NOT indicate prognosisdoes NOT indicate prognosis

The Dementia journey The Dementia journey ––considerations for planningconsiderations for planning

Dementia is a unique chronic disorderDementia is a unique chronic disorder

Diagnostic uncertaintyDiagnostic uncertainty--especially in early diseaseespecially in early disease

Pathway of declinePathway of decline--changing roleschanging roles

Interactions with the healthcare system and community are Interactions with the healthcare system and community are

often not related to dementia but impact on that interactionoften not related to dementia but impact on that interaction

Patients and Patients and carerscarers of older age at disease onset of older age at disease onset


Pathway of dementiaPathway of dementia

Well older peopleWell older people

The emergence of early difficultiesThe emergence of early difficulties

The emergence of significant difficulties in the activities of dThe emergence of significant difficulties in the activities of daily livingaily living

Reduced capacity for independence Reduced capacity for independence

High dependence on care and incapacityHigh dependence on care and incapacity

DeathDeath

Natural history of AlzheimerNatural history of Alzheimer’’s s diseasedisease

1 2 3 4 5 6 7 8 9

0

5

10

15

20

25

30

Time (years)

Symptoms

Diagnosis

Loss of functional independence

Behavioural problems

Nursing home placement

DeathMin

i-Men

tal S

tate

Exa

min

atio

n (M

MS

E) Early diagnosis Mild-to-moderate Severe

Feldman and Gracon. The Natural History of Alzheimer’s Disease. London: Martin Dunitz, 1996

INCREASED SEVERITY INCREASED BURDEN

Stage 7 – very severe

Stage 6 – severe

Stage 6 – severe

Stage 5 – moderately severe

Stage 4 – moderate

Stage 3 – mild

Stage 2 – very mild

Stage 1 – appears normal

Years after onset0 5 10 15 20

Loss of speech, locomotion,consciousness; death

Full-time care needed;institutionalised

Can no longer care for self;incontinent, depressed

Can no longer manage personal affairs;agitated, care needed

Family and friends notice problems

Normal

No noticeable cognitive decline

Mild function deficit – ‘forgetful’

Definitions from the Global Deterioration ScaleReisberg B et al., 1982

AD: AD: a progressive CNS disordera progressive CNS disorderimpairing patientsimpairing patients’’ ability to functionability to function

Behavior in the Later Stages of Behavior in the Later Stages of DementiaDementia

Understanding the behaviours of people Understanding the behaviours of people with dementia is difficultwith dementia is difficult

Not all refusal behaviour Not all refusal behaviour egeg refusal to eat, refusal to eat, refusal of medication is a rejection of the refusal of medication is a rejection of the health and safety objectives of the caring health and safety objectives of the caring actionaction

Quality care and skilled investigation for Quality care and skilled investigation for alternate causes of refusal must occur.alternate causes of refusal must occur.


When people are living with dementia are they When people are living with dementia are they dying?dying?

Is preparing to die while living with dementia Is preparing to die while living with dementia different to living without dementia different to living without dementia –– shouldnshouldn’’t t we all have we all have EPOAsEPOAs??

The The chronicitychronicity of dementia is a challenge for of dementia is a challenge for Advance Care PlanningAdvance Care Planning Maintaining validity Maintaining validity –– needs EPOAneeds EPOA Understanding when capacity has changedUnderstanding when capacity has changed In the setting of advanced dementia is there life when In the setting of advanced dementia is there life when

selfself--hood as recognised by others is lost ? When hood as recognised by others is lost ? When selfhood is so changed as to be unrecognisable are selfhood is so changed as to be unrecognisable are the Advance Care Plans made by the original self the Advance Care Plans made by the original self valid?valid?

Personal perspective on Personal perspective on decision making about End of decision making about End of

LifeLife Treatment/ nonTreatment/ non--treatment decisions are treatment decisions are

““personalpersonal”” decisionsdecisions between a person, their chosen support and a between a person, their chosen support and a

treatment teamtreatment team requires a transparence of moral position by the requires a transparence of moral position by the

treatment team and the person being treated treatment team and the person being treated should not be surrounded by legalistic or should not be surrounded by legalistic or

ideological language and trapsideological language and traps

Personal perspective on Personal perspective on decision making about End of decision making about End of

LifeLife Doctors Doctors ““healheal””

Doctors relieve suffering, pain and anguish should Doctors relieve suffering, pain and anguish should death be knocking and life departingdeath be knocking and life departing

Doctors should never call up death to extinguish life.Doctors should never call up death to extinguish life. Doctors should however not pursue futile attempts at Doctors should however not pursue futile attempts at

healing to avoid the management of dying.healing to avoid the management of dying.

When managing the life of an older person when they When managing the life of an older person when they are at their lowest I do not want my role to be are at their lowest I do not want my role to be confused. confused.

Medical FutilityMedical Futility ““Whenever the illness is too strong for the Whenever the illness is too strong for the

available remedies, the physician surely must available remedies, the physician surely must not expect that it can be overcome by not expect that it can be overcome by medicinemedicine…… To attempt futile treatment is to To attempt futile treatment is to display an ignorance that is allied to madnessdisplay an ignorance that is allied to madness””(Hippocratic Corpus in (Hippocratic Corpus in ReiserReiser, , DyckDyck, and Curran , and Curran 1977).1977).

Medical futility is the unacceptable likelihood of Medical futility is the unacceptable likelihood of achieving an effect that the patient has the achieving an effect that the patient has the capacity to appreciate as a benefit. capacity to appreciate as a benefit.

(Lawrence J. Schneiderman Bioethical Inquiry (2011) 8:123–131)

Medical FutilityMedical Futility

Quantitative FutilityQuantitative Futility In clinical studies it is accepted that a result is In clinical studies it is accepted that a result is

significant if the result has a 1:20 (0.05) significant if the result has a 1:20 (0.05) chance or less of occurring randomly and chance or less of occurring randomly and highly significant if that chance is 1:100(0.01) highly significant if that chance is 1:100(0.01) or less. or less.

If a medical or surgical intervention fails to If a medical or surgical intervention fails to achieve its expected outcome 99 in every 100 achieve its expected outcome 99 in every 100 times it is performed logic dictates it is futiletimes it is performed logic dictates it is futile

End-of-life Care for People with Dementia in Residential Care Settings Ladislav Volicer, M.D., Ph.D. School of Aging Studies University of South Florida, Tampa, FL Copyright 2005 AA USA

CPR SurvivalCPR SurvivalCPR is three times less likely to be successful in patients with dementia than in patients who are cognitively intact

(Ebell MH, Becker LA, Barry HC, Hagen M. Survival after in-hospital cardiopulmonary resuscitation. A meta-analysis. J Gen Int Med 1998; 13(12):805-816.)

CPR, CPR, ComorbidityComorbidity

and and SurvivalSurvival

Medical FutilityMedical Futility

Qualitative FutilityQualitative Futility Plato Asclepius Plato Asclepius -- that if the treatment fails to that if the treatment fails to

release the patient from being release the patient from being ““preoccupiedpreoccupied””with the illness and incapable of achieving any with the illness and incapable of achieving any other life goal that treatment should also be other life goal that treatment should also be regarded as futile.regarded as futile.

Lawrence J. Schneiderman Bioethical Inquiry (2011) 8:123–131

Medical Futility and DementiaMedical Futility and Dementia Dementia is rarely the reason for admission to Dementia is rarely the reason for admission to

acute careacute care The management of the acute event without The management of the acute event without

due reference to a patients other chronic due reference to a patients other chronic conditions would be inappropriate but it is not conditions would be inappropriate but it is not unusual for dementia.unusual for dementia.

Equally people with dementia should not be Equally people with dementia should not be excluded from hospitals, or the threshold for excluded from hospitals, or the threshold for admission be raised just because the system admission be raised just because the system does not meet their needs or puts them at does not meet their needs or puts them at risk.risk.

The Dementia Care in The Dementia Care in Hospital ProgramHospital Program

An all of Hospital Education Program to Improve the An all of Hospital Education Program to Improve the Awareness of and Communication with People with Awareness of and Communication with People with Dementia Linked to a Visual Cognitive Impairment Dementia Linked to a Visual Cognitive Impairment IdentifierIdentifier

22 hospitals in Victoria have engaged the education 22 hospitals in Victoria have engaged the education and culture changeand culture change

Currently working with Cabrini Health and St John of Currently working with Cabrini Health and St John of God God BendigoBendigo with the support of a with the support of a BupaBupa Foundation Foundation GrantGrant

Advance Care Planning Advance Care Planning –– AMA AMA policypolicy

Written in 2006 in response toWritten in 2006 in response to a call to develop a legal construct around ACP in a call to develop a legal construct around ACP in

the RAC sector because covering GPs were often the RAC sector because covering GPs were often reluctant to follow the directivereluctant to follow the directive

An acknowledgement the doctors were reluctant to An acknowledgement the doctors were reluctant to accept a more formal ACP wholeheartedly if it was accept a more formal ACP wholeheartedly if it was inflexible.inflexible.

Advance Care Planning Advance Care Planning –– AMA AMA policypolicy

Clauses of contentionClauses of contention

1.3 While providing patients with a means to participate in future health care decision-making, the AMA considers that ADs, in particular, pose ethical and legal challenges to the health care team.

1.4 As such, the AMA recommends that all States and Territories enact legislation that establishes advance directives as legally enforceable, whilst ensuring that the same legislation provides statutory protection for doctors who comply with an AD, or who do not comply if they have reasonable grounds to believe it is inconsistent with good medical practice or advances in medical science, thereby preserving doctors' clinical judgement and discretion.

Concluding Comments Concluding Comments –– few few answersanswers

Dementia is complex Dementia is complex –– it has diagnostic, chronological it has diagnostic, chronological and functional components and these component and functional components and these component vary independently along the dementia pathway. vary independently along the dementia pathway.

Dying well with dementia requires Dying well with dementia requires an understanding of where the individual with dementia is an understanding of where the individual with dementia is

from each of these components.from each of these components. an understanding of the awareness of the family carers of an understanding of the awareness of the family carers of

these different componentsthese different components An understanding of the nature of the acute condition and An understanding of the nature of the acute condition and

other other comorbiditiescomorbidities Living with Dementia and Dying well requires a Living with Dementia and Dying well requires a

flexible framework (ACD and EPOA) planning linked to flexible framework (ACD and EPOA) planning linked to that framework and frequent discussion on an that framework and frequent discussion on an individual, care team and community level.individual, care team and community level.

WHAT’S ONDementia Care EssentialsDCE Cert III FREEProvide support for people living with dementia

18 CNE points Thursday 7, 14 & 21 Feb 2013 9.30am – 4.00pmGeelong RSL, 50 Barwon Heads Road, Belmont

DCE Cert IV FREEFacilitate support responsive to the specific nature of dementia18 CNE points Friday 26 Oct, 2 & 16 Nov 2013 9.30am – 4.00pm

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Dementia Care Programs

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Check for 2013 course dates and enrol online atwww.fightdementia.org.au/victoria

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PROFESSOR COLLEEN

CARTWRIGHTDirector, ASLaRC Aged Services Unit


Planning for the End of Lifefor People with Dementia: Part 2

Presentation for Alzheimer’s Australia (Victoria)




Report: Part 2What may become legally available in the future.

• In Part 2, we refer to Doctor-Assisted Dying, which includes euthanasia and physician-assisted suicide. I will just use the term euthanasia, meaning active voluntary euthanasia, and the abbreviation AVE.

• Alzheimer’s Australia is not taking a position on euthanasia but it was considered necessary to “shine some light” on the debate so that people with dementia and their carers and family members did not confuse treatment that is legally available with euthanasia.

Community Perspectives on AVE

• My research demonstrated that there are 4 different community perspectives in relation to attitudes to euthanasia. – First: those who have not made up their minds/don’t want to

think about it.

– Second: those totally opposed to euthanasia who don’t want the law changed

– Third: those not opposed to euthanasia but don’t want the law changed (Give examples)

– Fourth: those who totally support euthanasia and want the law changed

Arguments for/against Active Voluntary Euthanasia:

The most common arguments for and against AVE can be grouped into the last three categories:

1. Arguments in favour of AVE and legislation allowing AVE

2. Arguments against AVE legislation but not against AVE

3. Arguments against AVE and against legislation.

We will explore the arguments for, and responses to, each of these categories.

(NB: The order above follows the Report and does not reflect a preference).

Group 1: Arguments in favour of AVE & AVE legislation & responses to those arguments

• Compassion and relief from sufferingA: Current law lacks compassion and mercy, forcing patients to continue to suffer

R: Palliative care can provide adequate comfort; the real problem is health care providers inexperienced in palliative care

• Death with dignityA: Patients have a right to preserve their dignity; hospital death can be undignified – families are left with traumatic memories

R: Preserving a person’s dignity depends on the attitudes of those around them, rather than treatment received

Group 1: Arguments in favour of AVE & responses to those arguments (cont.)

• Patient autonomy, self-determination and controlA: Right to self-determination; desire for control over timing and manner of death

R: The doctor’s autonomy also should be respected; consequences for society must also be consideredR: Physicians who do not know how to adequately relieve patient’s suffering may agree to end patient’s life

• Social JusticeA: Current legislation is discriminatory; a person can legally have

treatment withheld or withdrawn, knowing they will die but patients not technology-dependent do not have the same rights.

R: There is a moral distinction between taking life & withdrawing treatment/letting a person die.

Group 1: Arguments in favour of AVE & responses to those arguments (cont.)

• The need for openness, honesty and accountabilityA: Families acknowledge (off the record) that a loved one received AVE but because it is illegal they cannot grieve openlyand honestly about the death.A.Openness would allow development of better practices to improve ending of life

R: AVE can still result in complications in the dying process

• Expression of democracy and majority rulesA: There is evidence (research/polls) that most people support the right of terminally ill patients to be assisted to die if that is what they want

R: Some study designs are flawed and may not accurately reflect community views

Group 2: Arguments against AVE legislation (not against AVE) & responses

• Fear of abuse/coercionA: If AVE were legally available some people might be pressured into requesting it: a)by family, to relieve burden of care (or even by their own

“guilt” because they know that their care is a burden on their family)

b)by society, to save cost of care (with an ageing population older people may have to justify not requesting AVE):

c)by health professionals, who don’t know what else to provide

R: Patients can already refuse treatment or ask for it to be withdrawn, resulting in death; This is currently legal and there is no requirement to check for coercion

Group 2: Arguments against AVE legislation (not against AVE) & responses (cont.)

• The slippery slope argumentA: Once AVE is allowed for competent people it will extend to non-competent terminally ill people or others whose lives are judgedto be ‘not worth living’

R: No evidence of this in countries where AVE is legalR: Carefully tested safeguards can be adopted, e.g., AVE only being available to competent adults who give informed consent

• Palliative care can control pain and other sufferingA: Until all patients have equal access to palliative care, AVE should not be an option

R: Even when pain free, and with the best palliative care, some patients still request AVE

Group 3: Arguments against AVE & AVE legislation: responses to those arguments

• Religious convictions and belief in the sanctity of lifeA: Only God has the right to control life and death; it is neveracceptable to intentionally kill an innocent human being

R: ‘Thou shall not kill’ is actually ‘thou shall do no murder’R: In a democratic society people shouldn’t impose their religious beliefs on others

• Not knowing when requests are informed/autonomous A: If people feel useless & a burden, the choice for AVE might not really be a free, truly informed request

R: A competent person who has decided that his/her present stateis intolerable is making a legitimate request

Group 3: Arguments against AVE & AVE legislation & responses (cont.)

• Euthanasia would destroy patient-doctor relationship A: AVE is incompatible with the physician’s role as healer

R: AVE is not in conflict with the physician’s role, which is to do everything possible to promote patient wellbeing and respect patient autonomy

• AVE would increase the medicalisation of end of lifeA: Instead of allowing death to occur naturally, medical intervention would hasten death

R: Prolonging a person’s dying with medical technology increases the medicalisation of end of life more than assisting them to die would

Specific AVE Issues for People with Dementia

• Distress at being diagnosed with dementia could trigger a request for AVE

• Higher levels of support may be required for people with dementia; cost of care could influence decisions

• Ensuring adequate pain relief; inadequate pain relief may trigger a request for AVE

• If AVE is legalised, should a request made in an Advance Health Directive be granted for a person with dementia?

• If AVE is legalised, should others be able to request AVE for people with advanced dementia?

Contacts

– ASLaRC Aged Services Unithttp://[email protected]

– Alzheimer’s Australia– www.alzheimers.org.au

– The National Dementia Helpline1800 100 500

Acknowledgments

Alzheimer’s Australia National Consumer Advisory Committee

All Alzheimer’s Australia staff and volunteers, in particular those who assisted with organising this national tour

My senior research officer Dr. Sonya Brownie

WORKSHOP

Planning for the End of Lifefor People with DementiaAlzheimer’s Australia (Victoria)

Workshop Session




Interactive Session - 1• Discuss with the person nearest to you (or small group)

1. Are you comfortable discussing death & dying with your clients &/or your family members?

2. Have you discussed appointing an Enduring Power of Attorney with your clients &/or your family members?

3. Have you discussed writing an Advance Health Directive with any of your clients &/or your family members?

4. If yes to points 2 or 3, who raised the issue? Was there a “trigger”?

5. If you have a client or family member who has been diagnosed with dementia, how do you (or would you) start the discussion around Advance Care Planning? When?

Feedback from Interactive Session I

Interactive Session - 2

• Discuss with the person nearest to you (or small group)

– Who will you appoint as your own Enduring Guardian? (Or who did you appoint?)

– Why will you/did you choose that person (those people)?– How will they know what you want?– Are you sure they will respect your wishes (and make sure

other people respect them?)

Feedback from Interactive Session 2

Interactive Session - 3

• Discuss in pairs/group

– Have you written an Advance Health Directive for yourself?

– If yes, did you specify what treatments you did, or did not want?

– If no, is there anything stopping you from doing so? – If no, do you know where to go to get advice?


Interactive Session - 4 • Discuss in pairs/group

– Are you clear about what is/is not euthanasia? – What do you think the main issues of concern

would be if Active Voluntary Euthanasia were to be legalised in Australia?

– Do you think Active Voluntary Euthanasia and Palliative Care should both be options for terminally ill people?

– Is there anything you need more information about?


THANK YOU

end of life planning seminar ballarat 9 ......planning for the end of life for people with dementia:...

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