Transcript Slide 1

Protection of Legal Rights of Older
People
Professor Colleen Cartwright, Director
Aged Services Learning & Research Collaboration*
Southern Cross University
Adjunct Professor, UNSW Medical Faculty,
Rural Clinical School
[email protected]
* Proudly Sponsored by Banana Coast Community Credit Union
Using Advance Care Planning to Protect
Older People
• Context
• Fears and Concerns in the General Community
• Advance Care Planning (ACP) to Address
Fears and Concerns
– Enduring Power of Attorney
– Enduring Guardianship
– Advance Health Care Directives
• Does ACP Work as a Protective Mechanism?
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 protection of frail, vulnerable older
people, end-of-life care and extending the dying process
Fears & Concerns in the Community
1. Financial Abuse
• Financial abuse of older people is common and
perpetrators are often family members;
• Older people are often afraid to challenge a family
member who is misusing their money, for fear they
will be abandoned;
• Some family members do not consider use of their
parent’s assets as abuse: “it’s part of my inheritance”
Fears & Concerns in the Community
2. Over-treatment
• Cases Reported
– 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”.
– “I want to make sure that doesn’t happen to me”
Carers’ Stories
• (Husband) Close to the end of her life, “because the cancer
was attacking the bone and she had bad pain in her hip, they
put a pin in. And … I wondered why, if they knew she was
so crook, why did they do that, because it was a terrible mess
… It just added to her pain. And they gave her more chemo
as well…and they took numerous X-rays, 3 or 4 a day”.
• (Daughter). “She said that the medical staff were running
through her room ‘like a gravy train’. She didn’t know most
of the time what they were there for or what they were
doing… they usually just said something like ‘Now we’re
just taking you down to test you for (whatever)’… They
never asked her permission”.
Carers’ Stories - 2
• (Husband – who felt that the specialist just could not accept
“defeat”). “Because of (X – specialist) they were still trying to
cure her but it was not any point. They were doing everything.
Everyone was making out that this was going to be the answer,
when they knew damn well it wasn’t”.
• (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
Loss of mental faculties
Loss of control
Loss of independence
Burden on family
Loss of dignity
Leaving loved ones
Protracted dying
Extreme1/Physical2,3 pain 3
Death itself
Q1 Q2 NT
1
1
1
2
2
2
*
3
3
*
4
4
4
5
5
5
*
6
*
*
7
6
8
9/9 9/9 10/10
Advance Care Planning Helps to Address
Fears & Concerns
• Financial Mechanisms:
– Enduring Power of Attorney
– Family Agreements (a.k.a. independent care agreements,
personal services contracts, lifetime contracts). (Written
agreements give greater certainty).
• Health/Personal Care Mechanisms:
– Advance Health Care Directives
– Enduring Guardianship
– Person Responsible
Enduring Power of Attorney
• Relates only to property & money – EPA does not give
person appointed authority to make health care
decisions
• Power begins immediately unless otherwise stipulated
(but attorney is still “agent” and should not act
contrary to wishes of principal)
Enduring Power of Attorney
• Part 2, Section 9 of NSW Powers of Attorney Act states:
– Subject to this Act, a prescribed power of attorney confers
on the attorney the authority to do on behalf of the principal
anything that the principal may lawfully authorise an
attorney to do. But:
• Does not confer authority to act as trustee
• Does not generally confer authority to give gifts
• Does not generally confer authority to confer benefits on
attorneys (keep property separate; keep records)
• Does not generally confer authority to confer benefits to third
parties
Enduring Guardianship - 1
• A competent person over 18 can appoint an Enduring Guardian
(EG) to make personal & lifestyle decisions and/or decisions
about medical treatment on their behalf, in case they lose the
capacity to make own decisions.
•
• EG must be:
– at least 18 years old
– is usually a trusted relative or friend.
• EG cannot be a person who, at the time of appointment:
– provides medical treatment or care to the person on a professional basis;
or
– provides accommodation services or support services for daily living on
a professional basis; or
– is a relative of one of the above.
Enduring Guardianship - 2
• A person can appoint more than 1 EG.
– If more than 1 is appointed, the principal needs to state how
they will make their decisions (jointly or severally). (Note:
Can also appoint an alternative EG in case original EG dies
or becomes incapacitated).
• EG must agree to the appointment, should understand
the principle’s wishes and be prepared to carry them
out
– Appointment must be in writing, in approved form
– Form must be signed by principal, EG and witness (solicitor,
barrister, Registrar of the Courts) – signatures can be
witnessed separately
Advance Health Care Directives
• An Advance Health Care Directive
– is a written document, allowing a person to make their
wishes for future health care known
– extends the current right of a competent person to refuse
treatment to a future time when they may not be competent
– is NOT a form of euthanasia, as it only allows actions which
a person could legally consent to for themselves if they were
competent to speak
– only comes into effect when the person making it loses
decision-making capacity.
Barriers to Use of Advance Health Care
Directives
Barrier
Cty
%
HPs
%
Mid-Nth
Coast Ptnts
%
Don’t know how to
61
88
74
Don’t know enough about
them
60
91
71
Prefer to leave decision to
doctor
37
63
61
Don’t like to think about endof-life issues
33
75
27
Prefer to leave decision to
family
29
69
31
(60-69: 43%;
70+: 77%)
Benefits of Advance Health Care 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)
• Makes best use of community resources
What if there is no AHCD or EG?
• “Person Responsible”: The first readily available &
culturally appropriate of
– a spouse (provided the relationship is close & continuing)
– a (non-professional) carer
– a close relative or friend, of the patient
(Note: NOT Next-of-Kin and may not be the person the patient
would have chosen to make their decisions)
• (Note: For a person in a residential care facility, such as a
nursing home, the “carer” is not a staff member at the facility.
Usually it would be whoever was the carer before the person
went to the facility
When Does a Person Have Capacity to Make A
Decision (e.g. EG/AHCD)?
• Person is competent unless proved otherwise
• Person must understand the nature and the
effect of the decision to be made – (case study);
• 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
Does ACP Work as a Protective Mechanism? – 1
Financial Issues
• Recent C/W Govt Report: “Older People & the Law”
– Although some submissions to the inquiry claimed that
Enduring Power of Attorney provisions lead to financial
abuse, the inquiry concluded that in most cases they work
very well
– Our research in Qld in 2000 found that 39% of a large
random sample had given EPA for finances – extrapolates to
over 1 million people; in that same period there had been
about 80 cases of proven financial abuse involving EPA;
indicates that most are working well
– (There is no absolutely certain way to prevent abuse)
Does ACP Work as a Protective Mechanism? – 2
Health Care Issues
• EG and AHCD are legally binding mechanisms to
ensure that patient’s wishes are respected.
• They also offer protection to health care providers who
limit use of invasive treatments, as requested in
AHCDs or by EGs.
• AHCDs (or Preferred Treatment Statements completed
by EG/Person Responsible) can help to ensure that
frail older people who live in residential aged care
facilities are able to stay there and be cared for by
people they know and love, instead of being taken to
hospitals to die.
Issue Currently Being Addressed in NCAHS
• No provision on hospital admission forms for
recording existence of AHCD.
– GP who sent AHCD to hospital where one his older patients
is regularly admitted had form returned and was told, “Tell
the patient to bring it with them when they are next
admitted”
• No provision on hospital admission forms for
recording existence of Enduring Guardian - forms do
not comply with legislation – still ask for Next-of-Kin
– Next-of-Kin has no legal status in relation to making
medical decisions
– Patients being admitted to hospital who present Enduring
Guardian form are being told “Oh we don’t use those. Who
is your Next-of-Kin?”
Current Issues in NCAHS - 2
– Scenario: patient presents for admission, has EG form, told
“Not required, who is your Next-of-Kin?”
– Patient tells EG, “They would not accept the form.”
– Patient loses capacity, doctor asks N-o-K for decision
– N-o-K gives consent for treatment that EG knows the patient
absolutely did not want
– Patient ends up in PVS, coma, other negative QoL situation
– EG takes hospital/doctor to court; Office of Public Guardian
confirmed: it is responsibility of treating medical practitioner
to determine “person responsible”, in accordance with the law
– Admission staff may also be at risk
What do we need to do? – Financial
• Recommendation 18 of House of Reps inquiry into Older People
and the Law:
– That the Australian Government propose that the Standing Committee of
Attorneys-General develop:
• A campaign to promote awareness of powers of attorney and their advantages
for older people
• An information strategy to better inform principals of the implications of
making a power of attorney, and attorneys of their responsibilities to
principals
• We all have a duty of care to report suspected abuse; for service
providers (e.g. RACF) don’t wait until fees are 3 months overdue
before taking action – all the $$ will be gone by then.
• The key is Education, incl. presentations to older people’s clubs
& groups, service clubs, church-based organisations
What do we need to do? ACP for Health Care
• Continue educating community members and
empower them to ensure that their forms are recorded
and wishes respected; continue educating health care
providers
• Make completion of EG & AHCD forms a routine part
of General Practice, and of admission to RACF; also,
educate solicitors to tell clients about EG and AHCD
when they make a will or Enduring Power of Attorney
– (Note: EG forms can be witnessed by Registrar of the Courts
– does not require cost of solicitor; AHCD forms can be
witnessed by Registrar or JP)