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ACQ Volume 11, Number 3 2009 163
Case 3
Max is an 88-year-old resident in a nursing home. He has
advanced dementia. He presents to hospital with a severe
pneumonia as a result of profound dysphagia which is due
to his end-stage dementia. He has no advanced care
directives and no family. His financial affairs are managed by
the public guardian. Medical management favours
placement of a PEG so that Max can be discharged back to
his nursing home as soon as possible.
Discussion
Who can give informed consent?
Each of these cases raises different issues for the team with
regard to who can provide informed consent. When
considering substituted consent, speech pathologists need
to be aware of not only ethical considerations that arise in
individual cases but also relevant laws and legislation. These
may include:
• Emergency decisions If there was an urgent (life and
death) emergency need for medications for John, Anna or
Max, then two doctors could consent to the placement of
a NGT (or PEG, including administration of anaesthetic).
Placement of a NGT for delivery of medication could most
easily be argued by medical teams in Anna’s situation.
• Mental health act An important consideration for John
is whether he is covered by a mental health act. 2 Each
Australian state and territory has a different mental health
act. In some states, treatment decisions may be made
for John by the State Director of Mental Health Services
(a psychiatrist). Establishing whether John is covered
under a mental health act is simply done by contacting
his treating mental health team. If he was covered by a
mental health Act his affairs may have been handed over
to an adult guardian. The adult guardian would then be
the substitute decision-maker for John’s general health
and well being. If John was not covered by a mental
health act then his father would be considered his next of
kin and would be the substitute decision-maker.
• Consent to treatment and palliative care acts
Unfortunately, in Anna and Max’s cases there are
no clearly designated decision-makers to assist in
determining appropriate treatment options. The challenge
in Anna’s case is the advanced care directive simply
stating she does not want tube for feeding. Is this the
same as refusing a tube for medication? Would Anna
perceive a tube for medication as an extraordinary
measure and refuse it if able?
• It is reasonable and ethical to respect Anna’s right to have
control over the end of her life. From state to state, however,
there are different views about advanced care directives
and their legality and validity.3 In Anna’s case, if we are to
consider the principle of autonomy, it would suggest her
clearly expressed wish should be respected and form
part of the treating team’s deliberations. The absence of
I n this edition of Ethical Conversations, we consider
ethical issues related to informed consent and the
placement of feeding tubes. Informed consent is the
right of individuals to make decisions about their treatment
based on all relevant information of the risks and benefits
of that treatment (Mitchell, Kerridge, & Lovatt, 1996). It is
predicated on the principle of client autonomy. Autonomy is
about respecting the rights of people to self-determination
in relation to decisions which affect them (Speech
Pathology Australia, 2000). Autonomy is the principle that
underpins issues such as consent, refusal of treatment, and
confidentiality (Smith, 2007).
In certain circumstances a person’s right to give consent
may be removed. This can occur as a result of impaired
capacity to make decisions or in the case of severe mental
health issues when a person’s choice could result in harm
to themselves or others (Trobec, Herbst, & Žvanut, 2009). In
these circumstances another person or statutory body may
become the designated substitute decision-maker.
Three cases are provided to illustrate a number of
issues speech pathologists may want to consider when
contemplating substituted informed consent for the
placement of feeding tubes (either short-term such as
nasogastric tubes [NGTs] or long-term such as percutaneous
endoscopic gastrostomy tubes [PEG tubes]).
Case scenarios
Case 1
John is in his early 30s and has a long history of schizophrenia.
John’s schizophrenia is being managed by medication and is
currently stable. He is single and lives with his very caring
father. On this most recent admission to hospital, John presents
with swallowing problems as a result of treatment for
cerebral lymphoma. He is unable to communicate coherently
nor is he able to eat, drink, or swallow his medications safely.
He pulls out all NGTs and intravenous therapy. The medical
team propose surgically placing a PEG feeding tube into
John’s stomach to provide nutrition, hydration, and
medications while he continues his treatment for lymphoma.
There is a good prognosis for his lymphoma treatment.
Case 2
Anna is in her late 60s and has suffered a stroke. On the day
after her stroke she has severe language impairment (dysphasia)
and is unable to speak or answer simple yes/no questions. She
has profound dysphagia and her poor swallowing prevents
her from taking any food, fluid, or medication by mouth.
Anna has no family but has a legally prepared Advanced
Care Directive1 that states she does not want artificial (tube)
feeding. Medical management favours placement of a
temporary NGT so Anna can be given urgent cardiac
medication which can only be given via a tube or by mouth.
If she does not receive this medication she is at risk of a
heart attack or further strokes.
To tube or not to tube:
Who can ethically answer
that question?
Helen Smith and Noel Muller
Helen Smith
(top) and Noel
Muller
Ethical conversations