END OF LIFE PLANNING SEMINAR GEELONG 10 OCTOBER 2012 · 2020-05-01 · END OF LIFE PLANNING SEMINAR GEELONG 10 OCTOBER 2012. PROFESSOR COLLEEN CARTWRIGHT Director, ASLaRC Aged Services

WELCOMEEND OF LIFE PLANNING SEMINAR

GEELONG

10 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

ASSOCIATE PROFESSOR

CHARLIE CORKEStaff Specialist Intensive Care,

Geelong Hospital

A/Prof Charlie Corke

Towards Serious, Efficient, Effective Advance Care Planning

We all die

Human death is not active, we have to die of something

We can now stop (delay) dying from most medical conditions

Acting to stop death inevitably results in highly technological deaths

Most of us do not want this

How do we decide to ‘let someone die’

DOCTORS

‘Letting someone die– who could survive with treatment’

Failure, shame, discomfort

Not a good doctor

Incompetence or negligence

Investigation, censure and criticism

NOTE: Courts require a very high level of certainty when confronted with this decision

Difficult to get doctors to back off - even for determined medical families‘it’s a treatable condition’

FAMILY

‘Letting someone die– who could survive with treatment’

Not loving, not caring, not trying

Guilt

Responsibility

Post Traumatic Stress Syndrome

THE PATIENT

‘Declining treatment that has inadequate benefit’

Autonomy

Respect

Rights

Personal Choice

Default

We must always do everything possible to prevent death

Poor outcome (if not death) is not a significant consideration

Significant burden of treatment (magnitude and duration) is not a significant consideration

It was widely believed that decisions/choices are "private and unobservable" and/or are too complex to be understood

Increasing interest with two recent Nobel Prizes in Economics being awarded for choice research

Cuts across social and behavioural science areas, including mathematicians, statisticians, economists, marketers, psychologists, management scientists, etc

EOL ValuesStudy

>55 yrs

Most people do not want the default (prolongation of life whatever the cost)

Doctors and family can only deviate from the default (to save life) where there is clear instruction from the patient

.. so most people need to provide instruction (ACP) and it needs to be clear

It is difficult to be absolutely certain about a patient’s wish not to have treatment to try to save their life

– but we need extreme certainty for such a serious outcome (death)

How can we reliably (and efficiently) get this level of certainty?

Do the public recognise the need to express wishes?

No (a few do)

Is our model to get wishes expressed optimal?

No

Appointing MEPOA with a lawyerlittle meaningful discussion

Consultation with an ACP facilitator>40 minutesStatement of Choices = clear guidance in <20%MEPOA awareness of role?

GPs ??

Other ?

System that can cater to many thousands (millions) of people

Applicable to Culturally and Linguistically Diverse (CALD)

Gives enough certainty for doctors (and families) to be confident to act on wishes

Can provide for regular review

Gets wishes / documentation into medical notes and into family discussion

values and attitudes

general wishes and goals

specific treatment choices

JILL MANNRespecting Patient Choices Program,

Barwon Health

Advance Care Planning Barwon HealthA Community ProgramJill MannCoordinatorRespecting Patient Choices® Program


• What is it?• What we want ACP to Achieve?• Why?• When & who• Barwon Health RPC® Program• Challenges & Barriers• The Future

What is advance care planning?

• Advance care planning is a consultative process that enables a person to make decisions about future health and medical care, should they become unable to participate or communicate decisions for themselves.

Supports: - autonomy- informed consent

- dignity- prevent suffering


It Involves the individual/Person Responsible:

•Understanding possible future health choices.•Thinking about choices in light of what is important, reflecting on goals and values.•Talking about decisions with loved ones and health care providers.•Documenting medical treatment preferences.

Let’s be clear what we’re talking about!

What do we want to achieve?

• Establish who to talk to if a person becomes too sick to speak for themselves

• Establish what a persons wishes would be at the end of their life

- What sort of medical treatments they would want or not want.

• Record these wishes in a form that health professionals will recognise and be able to act upon.

Advance Care Planning in 3-Steps

A Appoint an AgentEnduring Power of Attorney Medical Treatment or the Person Responsible

C Chat and CommunicateAgent, family, friends, doctors

P Put it on PaperIf there is something you feel strongly about

Why do it?

• Better planning for health crises or deterioration• Improved provision of care and services to meet

needs and preferences• Begin realistic dialogue & on-going discussion • Improves Communication /Shared decision making• Preferred place of care• Control / Empowerment – self determination• Prevent inappropriate medical treatments• Improved outcomes• Fear• Hope

When & Who?

• Following a diagnosis of life limiting condition or chronic illness

• Assessment of patient need• In conjunction with prognostic indicators • Ask yourself the “Surprise Question”!• Multiple hospital admissions• Admission to a RACF • Those with specific requests regarding their

treatment• Aged• In-patients who during an episode of care have had

any “Limitation of Medical Treatment” order in place

Respecting Patient Choices® Program

• Commenced July 2005• Funding from Victorian Government – Department of

Health• Central Respecting Patient Choices® (RPC®) Office• RPC® Staff: Clinical Leader / Coordinator / ACP

Consultant / Admin Assist• Trained ~ 400 staff• Marketing – Public Launch 2008• Extended service to wider community

Referral to RPC® Program

• Referral Source:- Self Referral- Community Programs- GP’s - Acute/Sub-acute/Aged Care - Other health services- Specialists- Lawyer’s

• How- Phone- Email- Barwon Health Intranet &Website - Barwon Medicare Local - Website

ACP & General Practice

• ACP discussions take time – refer to RPC® program• Incorporate ACP introduction into routine consultations

for:- Chronic Disease- Life limiting illness- Early dementia- Over 75yrs Health Assessments- Chronic Disease Management Planning- Other interested individuals

ACP & General Practice

•GP Role:-Raise awareness of ACP – posters/pamphlets/ACP Packs-Assess capacity -Discuss and witness documents-Refer to ACP Facilitator

Referrals

0

100

200

300

400

500

600

700

800

900

1000

2006-07 2008 2009 2010 2011 2012

Self

Community

Acute

Sub Acute

Aged Care

GP

Other Health Service

Specialist

ACP Activity

-50

200

450

700

950

1200

1450

1700

1950

2200

2450

2700

2006-07 2008 2009 2010 2011 2012

Referrals

Contacts

Completed ACP's

Declined

Reviews

Deaths with ACP

ACP Medical Wishes Adherence

50

1

17 20

0

16

51

0

38

76

0

33

87

0

48

63

0

28

0

10

20

30

40

50

60

70

80

90

2006 -07

2008 2009 2010 2011 2012

Yes

No

Unknown

ACP Completion

RPC® Program staff:

• Audit• Register & Process• Clinical Alerts• Scanning into Electronic Medical Record• Distribute• Satisfaction Survey• Review

Challenges & Barriers

• Left to Health Care Professionals to initiate discussion

• Time for good discussions – minimal reimbursement.• Difficult discussions• ‘Death Anxiety’ of staff & patients• Making time• Sensitivities and sadness• May require extra communication skills • Self awareness

The Future……

• National conformity – “National Framework for ACD’s”• ‘Initiation of such a discussion (ACP) for the many is

increasingly seen as being more valuable than specific refusal of treatment for the few.’

• ACP routine part of care for every appropriate person• Negotiate more individual - centred end of life care• Tailor services and care to meet needs• Improve communication• Empower and enable individuals/families at end of life• Increase community awareness

ACP works best when patients:

• TALK to their doctor(s) about any illness and treatment options.

• TALK with family/friends about what is important to them their choices.

• CHOOSE someone who can make decisions if they cannot.

• TELL their appointed agent, family and doctor about preferences for future medical treatments.

• WRITE down their preferences so that these people have something to refer to in the future.

• For further information, contact the Respecting Patient Choices®program on 5226 7006.

Its important to remember that…..

• An ACP can be changed at anytime as a persons situation or wishes change.

• ACP is done over time and not a single conversation.

• Decisions like these are best considered before a health crises

• Only comes into play when capacity is lost.

Life in 4 Bottles

Further Information

Barwon Health Respecting Patient Choices®program

- 03 5226 7006

Helpful References:

www.respectingpatientchoices.org.auwww.sswahs.nsw.gov.au/SSWAHS/myWishes/default.htmlwww.planningaheadtools.com.au/www.health.vic.gov.au/qualitycouncil/activities/training.htmwww.health.vic.gov.au/acp/

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

Barkly Motor Lodge, 43-57 Main road, Ballarat

Dementia Care Programs

Add your name to our mailing list to receive the Jan – Jun 2013 Education Calendar Booklet

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

Phone 03 9815 7808 or email [email protected]

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


• 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?



• 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

Documents

END OF LIFE PLANNING SEMINAR GEELONG 10 OCTOBER 2012 · 2020-05-01 · END OF LIFE PLANNING SEMINAR GEELONG 10 OCTOBER 2012. PROFESSOR COLLEEN CARTWRIGHT Director, ASLaRC Aged Services