The battle over the right to choose life or death for
Terri Schiavo — the Florida woman who lived in a
persistent vegetative state for 15 years — demonstrates
just how important a living will is. Many applauded Ms
Schiavo's parents for intervening to keep her alive. Others
were appalled at their insistence on using artificial
means to prolong her life. Sadly, no one knew for sure
what Ms Schiavo's wishes would have been. The whole fiasco
could have been avoided if she had had a living will.
Still, something good could come out of all the depressing
media coverage if it drives more people to get 'it' in
writing.
"Most people don't think they need
a living will," says Joan Gilmour, a professor at the
Osgoode Hall Law School who specializes in health law
and legal governance of healthcare issues. "Or they
don't like to think about needing one. Especially when
they're feeling healthy."
But Professor Gilmour says that
the Schiavo case shows us that the unexpected can happen
to anyone. "A living will isn't just for people who
are elderly and/or seriously ill," she adds. "Terri
Schiavo collapsed as a young woman."
Now that the dust has settled on
the media circus that was the Terri Schiavo case, patients
may flock to you with questions about what end-of-life
care options are available and how to make sure their
wishes are carried out. Here are some pointers on how
to guide your patients through the potentially confusing
process of drawing up a living will.
GET
IT IN WRITING
What the future holds A living will — as
it is colloquially known — basically outlines a
patient's future healthcare wishes. There are many different
terms out there like healthcare directives, advanced
care directives, representation agreements, mandates,
authorizations, personal directives and powers of attorney
of personal care. You can tell your patient that it
all essentially means the same thing. The terminology
just varies from province to province. "If you talk
about a living will people generally know what you mean,"
says Professor Gilmour. Ideally, patients should put
together their living will while they still have the
capacity to make those choices about their future. "It's
very useful to prevent what happened in the Schiavo
case," says Professor Gilmour. Dr Peter A Singer, the
director of the University of Toronto Joint Centre for
Bioethics, adds that a living will is a good tool to
get families talking about death and how they can face
it together. "It's a way to relieve family members of
the burden of deciding," he says.
Two steps forward Professor
Gilmour specifies that there are two key steps that
you should tell your patients about. First, they need
to appoint somebody to make healthcare decisions for
them in the event that they can't do it themselves.
This person is called a proxy. Second, they have to
specify the kind of care they want or don't want. "Sometimes
people find that they know who they would want," says
Professor Gilmour, "but they aren't sure what they want."
Dr Singer adds that most people appoint the same person
as their proxy who would otherwise have legal authority
to make decisions for them, like a spouse or adult child.
Designating someone as a proxy will cut down on potential
conflicts among family members in the future —
even though such instances are rare. Patients should
also be aware that if they don't choose what type of
care they want, the decision will ultimately lie with
their proxy.
Will kits Professor Gilmour explains
that patients don't have to see a lawyer to complete
a living will — although it can't hurt. "There
are kits available," she says, "but they aren't all
necessarily legitimate." Professor Gilmour warns that
patients should make sure that their kits are legal
in their province. "Many of these kits are American,"
she cautions. Dr Singer adds that it would help if you
point your patients in the right direction. A good place
for them to start is to get the U of T's Joint Centre
for Bioethics downloadable PDF version of a living will
that's applicable in all provinces at www.utoronto.ca/jcb.
The MD's role Dr Singer
stresses that family doctors have a particularly important
role to play in a patient's living will. "It's important
to broach the issue and ask if these measures have been
put in place," he says. "Talk to either the patient
or a relative of the patient," he advises. You can also
help patients tailor the information in their living
will according to their current health status, explains
Dr Singer. "For instance, if the patient has ALS [amyotrophic
lateral sclerosis], the most likely result is that they
will need a ventilator," he explains. As a physician
you're in an ideal position to advise patients about
certain advanced care treatments like feeding tubes,
blood transfusions, CPR, etc.
No will? There's still a way
In some cases, patients might not be prepared to draw
up a living will. Professor Gilmour says that you should
tell those patients not to panic while they prepare.
"There is still guidance in the law," she says. "We,
on the whole, have tended to be a lot less litigious
than the US."
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The meaning of end-of-life
options
Here are the definitions
of some common life sustaining interventions and
other terms that patients may come across in the
course of drawing up a living will.
Cardiopulmonary resuscitation
(CPR) This procedure is used to restart the
heart if it has stopped beating. CPR in hospital
involves the use of pressure and electrical shocks
applied to the chest, a respirator or a tube inserted
down the throat and into the lungs to assist breathing,
and drugs to jump-start the heart (eg adrenaline
or epinephrine), which are injected into a vein.
Once the heart is beating, the patient usually
remains unconscious and is placed under close
monitoring for several days in an intensive care
unit. If the heart stops beating, immediate death
is certain unless CPR is performed.
Ventilator If someone
can't breathe, a ventilator may be used to get
air into the lungs. A tube is put down the person's
throat into the lungs — sometimes this involves
minor surgery to open up the trachea. The ventilator
is needed as long as the lungs aren't working.
Without a ventilator, someone with respiratory
failure would probably die within minutes to hours.
Examples of situations where ventilation is used
to assist breathing include anaphylactic shock
(due to food allergies perhaps), severe asthma
attack or chest trauma, smoke inhalation during
a fire and drug overdose.
Dialysis A dialysis machine
basically replaces the normal functions of the
kidney. This process removes excess potassium,
water and other waste products from the blood.
In the event of kidney failure, potassium in the
blood would build up and eventually cause the
heart to stop unless dialysis is done — the
body uses potassium to control the heart rhythm.
Dialysis is needed as long as the person's kidneys
aren't working — without it, these people
would only last about seven to 14 days.
A blood transfusion refers
to blood given through a needle inserted into
a person's vein. Someone who's bleeding very heavily
from a stomach ulcer or during major surgery would
need a blood transfusion. In emergency situations,
a person who's lost a lot of blood and doesn't
receive a transfusion may have only a few hours
to live.
Life-saving surgery This
may involve a wide range of procedures —
for example, removal of an inflamed gall bladder
or appendix, heart bypass or organ transplants.
Life-saving antibiotics
These drugs are used to treat infections such
as pneumonia or meningitis. They may be given
orally, in the form of pills, or they may be given
intravenously.
Tube feeding In this
case, liquid nourishment is given through a tube
that's put into a person's stomach through the
nose or through a small hole in the abdomen. Someone
who cannot eat relies on a feeding tube to receive
nutrition and survive.
Current health Someone
who's currently healthy would fill in this category
to specify what he or she would like done in the
case of an emergency — for example, in the
event of a heart attack or a car accident..
Treatment trial If a
person is unsure of whether a treatment would
be beneficial or not then they simply write 'treatment
trial' in the box rather than a straight 'yes'
or 'no' response. They can then try the treatment
for an appropriate period during which time their
doctor will assess the benefit of that intervention.
Whether it is continued or stopped will then depend
on the benefit seen.
Undecided If you indicate
that you are 'undecided' for any treatment category
then it will be left up to your proxy to decide
whether you receive this therapy or not in the
event of an emergency.
link to pdf of treatment
intervention table sample: Yes,
No or maybe
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