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The following article is from the SAVES newsletter, The
VE Bulletin, Vol 16 No 3, November 99
Think about your dying process
...
and then state your wishes clearly
South Australia's 1995 Consent to Treatment and Palliative Care Act
was pioneering legislation. For the first time the words "palliative care"
were included in the title of an Act of Parliament. The patient's right
to self determination in respect of accepting or rejecting medical treatment
was clearly acknowledged. The Act also emphasised the obligation of medical
practitioners to respect this right.
One of the key provisions was that people over sixteen years of age
could make decisions concerning future treatment options, should they be
unable to do so at the time. These decisions form an anticipatory or advance
direction, which may be made alone, or in conjunction with a Medical Power
of Attorney. Schedule 2 of the Act provides the format for the anticipatory
direction and Schedule 1 for the Power of Attorney. The anticipatory direction
can be quite brief or contain an explicit statement of wishes, such as
whether consent, or refusal of consent, is only to operate under certain
circumstances, or on certain conditions. However many find it difficult
to clearly assess, and then spell out their wishes for the kinds of medical
and personal treatment they would want in the future.
In 33 of the states of the USA, a publication called "Five Wishes" is
proving helpful in providing a simple process leading to a legally valid
anticipatory directive. The document comprises five sections, each one
listing many different options for evaluation. The various options in the
document are endorsed or rejected, by ticking or striking out each option,
and/or utilising blank spaces for additional comments. The five statements
and their rationale are as follows:
-
"The person I want to make health care decisions for me if I cannot
make them for myself."
Suggestions are offered on choosing an appropriate person as advocate
for the patient. For instance it suggests that ideally this should be someone
who knows the person well, cares about them and is prepared to make difficult
decisions. This need not necessarily be a spouse or family member, as they
may be too emotionally involved to be objective. The scope of decision
making may include such issues as choice of medical care, tests or surgery,
admission to a nursing home, initiation or withdrawal of artificial feeding,
approving the release of medical files, taking necessary legal action and
applying for benefits. Decisions will, of course, need to be made in accordance
with the latest known wishes of the patient.
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"My wish for the kind of medical treatment I want and don't want."
Options considered include general instructions on levels of pain
relief, food and fluids required, as well as the issue of life support
options. Other choices which may need to be made are listed, including
assistance in breathing, tube feeding, cardio-pulmonary resuscitation,
surgery, blood transfusions, dialysis and antibiotics. In a case where
death is anticipated, the issue might be whether life support treatment
should be initiated, or if started, stopped. In the case of the comatose
state, severe brain damage or gross trauma, the question might be whether
one would choose to be kept alive.
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"My wish for how comfortable I want to be."
Specific options for personal care, grooming, analgesia, incontinence
management or any other personal care priorities are considered.
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"My wish for how I want people to treat me."
Some people have very express wishes concerning such issues as religious
observance, the extent of inter-personal contact with others at the end
of life, and the preferred setting for death. This section allows for nominating
several of many options around these issues.
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" My wish for what I want my loved ones to know."
There is need to examine issues such as family reconciliation, "making
peace" with loved ones, organ donation, funeral arrangements, how one would
like to be remembered through messages to friends, acquaintances and loved
ones. This section provides the opportunity to attend to life's "unfinished
business".
Although "Five Wishes" could not be used directly in South Australia, it
has value as a guide or stimulus to discussion on the full range of issues
which may need to be considered prior to making one's own anticipatory
direction under the Consent to Treatment and Palliative Care Act.
Important issues can be identified, aired, and decisions made openly, encouraging
peace of mind for all concerned. Not everyone will wish to make an anticipat-
ory directive containing exhaustive detail, of course, but it is preferable
that even a brief one is completed from the vantage point of being fully
informed. SAVES considers everyone should complete an anticipatory direction.
Our comprehensive kit for this purpose is available free of charge for
members and for $5 to non-members in Australia from our Hon. Secretary
on receipt of a stamped self addressed envelope. The document "Five Wishes"
has a similar role to the Life Values Statement in our kit, and may be
downloaded free of charge from the internet address below. Alternatively
it may be obtained from the postal address below for a donation of $4 (US)
or borrowed from the SAVES library.
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