Transcript ADVANCE DIRECTIVES - BENEFITS & LIMITS Dying in Australia

Advance Care Planning: What is it
and Why is it Important?
Professor Colleen Cartwright, Director
Aged Services Learning & Research Centre
Southern Cross University
Adjunct Professor, UNSW Medical Faculty
Rural Clinical School
[email protected]
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
“60 & Better”
• Fears and concerns in the general community
• 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”.
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"
(Brown et al., 1986:208).
• Definition used in studies by Steinberg et al, 1996a
& b, 1997; Cartwright et al, 1998 & 2000
– 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).
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.
• Even the term "double effect" is problematic and unhelpful,
particularly in a palliative care situation, as it may lead to
undertreatment of pain.
• 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
Respecting a Patient's Right to Refuse
Treatment
• This is a legal and moral right possessed by every
competent person, under both common law and, in
some States/ Territories, under statute law relating to
assault; also by non-competent patient by AHCD or
Enduring Guardianship.
• Difficult area for some health professionals to accept,
especially such things as a person refusing a blood
transfusion because of religious beliefs. (NB: They
cannot legally refuse for a child)
Withholding/Withdrawing Futile LifeSupports 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.
Community Concerns in Terminal Illness:
Rank Order
FACTORS
Q1
Q2
NT
Loss of Mental Faculties
1
1
1
Loss of Control
2
2
2
Loss of Independence
*
3
3
Burden on Family
*
4
4
Loss of Dignity
4
5
5
Leaving Loved Ones
5
*
6
Protracted Dying
*
*
7
Extreme /Physical Pain
3
6
8
Death Itself
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
Discussion with Health Care Provider/Noted in File
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.
Support for Advance Health Care Directives
STATEMENT
STUDY 1
GPs Ptnts HPs
%
%
%
Cty
%
Mid-Nth
Coast
Ptnts*
%
76
64
71
77
71
85
HPs Cty
%
%
AHCDs would make
useful contribution
76
to medical care
STUDY 2
STUDY 3
AHCDs should be
legally binding
52
58
25
67
65
70
94
Would make own
AHCD
68
47
48
61
71
58
69
* 54 patients aged 60 or more, attending Bellingen or Coffs Harbour Hospitals or
1 of 3 local GPs
Other Statements of Support for AHCDs
from Health Professionals
STATEMENTS
Patients should be able to indicate
future treatment preferences
STUDY
1-%
STUDY STUDY 3
2- %
-%
81
80
86
Patients would worry less about
receiving unwanted treatment if they
have completed an AHCD
78
78
79
Health Professionals would worry
less about the legal consequences of
limiting care if following AHCD
65
64
N/A
AHCDs would reduce family discord
over withholding/with-drawing
treatment
67
66
73
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
Where Should an AHCD be Kept?
• Copy in GP File
• Copy with 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)
What if there is no AHCD or EG?
• “Person Responsible”: The first readily available &
culturally appropriate of
– a spouse (including de-facto and same sex spouse)
– 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 aged care facility
(previously called 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
Issues in AHS - 1
• 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?”
Issues in AHS - 2
• Current situation puts hospital – and potentially
health care staff - at legal risk
• Office of Public Guardian confirmed that, under
the legislation, it is the responsibility of the
treating medical practitioner to ascertain if the
person has appointed an Enduring Guardian and, if
not, who is the correct “person responsible”.
Issues in AHS - 3
– 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 to court; doctor may have some defence
(unless patient told her/him before losing capacity that s/he
had EG), hospital would have none – admission staff may
also be at risk
Issues in AHS - 4
• What do we need to do – in hospitals &
RACF?
– Change admission forms
– Change computer programs to reflect changes
– Ensure AHCD & EG forms go into patients’
medical records and alert is put on record and in
computer
– Educate staff – admissions; medical records;
medical and nursing; allied health; pastoral care
What do we need to do – in the
Community?
• Continue educating community members and empower
them to ensure that their forms are recorded and wishes
respected
• 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)