by Thomas A. Preston, M.D.
DYING YOUR WAY
Although medical technology saves the
lives of many and is able to prolong life
for most of us, we are now in an era of
having to deal with an undesirable side effect—
prolonged dying. The same technology that adds
months or years to patients with otherwise fatal
diseases can also extend suffering during the last
phases of life. Whereas people with terminal illnesses
used to die relatively quickly of pneumonia
or heart attacks, the dying process is now extended
with operations, multiple rounds of
chemotherapy or other treatments that do not
cure but only prolong dying.
All too often these new forms of techno-dying
mean increased suffering. Although a majority of
Americans would prefer to die in peace at home,
about 70 percent die in medical institutions and
about 40 percent spend at least 10 days in an
intensive care unit at the end of life. Worse yet, a
majority of dying patients experience severe,
undertreated pain in the last stages of dying.
Modern medicine has become sort of a
Faustian bargain—we want it when it gives us
longer life with reasonably good quality but it can
turn against us with increased suffering at the
end. Our interactions with techno-medicine and
how they affect us are based on many decisions
made over months or years so if we want to die
peacefully, we need to give serious thought about
the modern way of dying and how we can do it
on our own terms.
PLANNING AND DECISION MAKING
The antidote for the agony of weeks or months of
extended high-tech dying is planning ahead and
then participating in medical decisions. Make no
mistake, unless you die suddenly or without any
medical care, many decisions will be made that
will determine the manner in which you die and
when. Whether you have another round of
chemotherapy, whether you stay in the hospital
or go home to die, even something so seemingly
simple as whether you have antibiotics for an
infection, or another blood transfusion, all such
decisions have great implications as to how long
and how peaceful the dying process will be.
Furthermore, advance planning is necessary
because the most important decisions often arise
after a patient is no longer mentally able to make
decisions. For example, the decision as to
whether someone should be treated with an artificial
ventilator often comes when that person is
unconscious after an operation or a stroke. And
the decision whether to go to an intensive care
unit or to go home to die often must be made
when the patient is heavily drugged or sedated.
The key to peaceful dying is shared decisionmaking,
with patient, family and doctors all
involved. I’m not suggesting you do it all on
your own, just that you participate in making
decisions that reflect your values and goals.
Remember, “no decision is a decision,” because it
means someone else will make it for you. Many
doctors will be making important decisions that
affect you; they tend to “do everything possible”
rather than to make decisions based on your
choices. If you don’t get involved in these decisions,
someone else (maybe the doctor on call in
the ER) will make them for you. So you have
every right to participate and you must participate
if you want control over how you die.
But you need the help of your physicians for
their expertise in advising you and as your agents
who will be carrying out your wishes. You have to
be very clear with your physicians and you must
have their agreement in advance to help you die
your way. Above all, you need the understanding
and support of your family because they will be
pinch-hitting for you after you cannot make
decisions. Without their help in carrying out
your wishes, the doctors may not act as you
wanted them to do.
Helpful change is in the air—more and more
physicians are heeding the pleas of their patients
for more peaceful dying. Movements for better
pain management and more hospices or “comfort
care” units within hospitals are gaining momentum.
Some physicians remain resistant to these
trends but in general it is becoming easier for
patients to assert their wishes for how they die
through advance planning and discussions with
physicians.
PLANNING IN ADVANCE
What then are the methods and options for planning
and joint decision-making? Start with written
advance directives. A living will is essentially
a statement about how you want to be treated
when you are dying. This statement tells your doctors what you want done if you are dying
and become unconscious or unable to make
decisions. For example, would you want to
be resuscitated if your heart stopped or
would you want to be put on a breathing
machine? The living will is a guideline to
your goals and choices but you should back
it up with a durable power of attorney—a
document through which you appoint someone
(usually a close relative) to make medical
decisions for you if you become unable to
do so.
Give these advance directives to your
physicians as their guide to your end-of-life
treatment. It is important also to discuss
them with your family. This is perhaps the
easiest way to ease into a discussion of your
wishes with close family members so they
will know what you want when or if they
have to make decisions for you.
SHORTENING THE DYING PROCESS
Learn how you can limit suffering at the end
of life, if you wish, by avoiding or withdrawing
treatments that probably would do no
more than extend the final phase of dying.
Overall, this is probably the most important
and effective way of avoiding prolonged suffering.
Most people die in hospitals after
their lives have been drawn out far past their
natural limits and the point of meaningful
existence. But to avoid such futile therapy
you really have to plan in advance through
discussions with your doctors and family. If a
doctor says, “You need this operation,” or
“another round of chemotherapy,” or “a feeding
tube,” it’s almost impossible to “just say
no” if you haven’t discussed it in advance.
Everyone involved must know that you do
not want “long-shot” cures that in all likelihood
will only add weeks or months to your
dying process. Preparing for this takes some
time and work but it’s well worthwhile.
HOSPICE AND PALLIATIVE CARE
Learn about hospice and the option of “palliative
care,” which means concentrating on
relief of discomfort at end of life. In order to
avoid prolonged dying it is often necessary to
“let go” and to give up on the notion of a
cure. This is not easy and although it is
possible to continue to seek a cure and to get
effective relief of symptoms, often the search
for a cure prevents effective relief of physical
suffering. And studies show that when a cure
becomes medically unlikely, those who continue
trying for a cure do not live as long and
have poorer control of physical symptoms
than those who concentrate on palliative
care. This underlies the concept of hospice
programs that provide patients with no “curative”
therapy but concentrate on aggressive
treatment of symptoms as well as psychological,
social and spiritual concerns. For many
patients hospice provides the best quality of
life during the final weeks or months, with
the best chance of peaceful dying.
AGGRESSIVE PAIN MANAGEMENT
Learn about legal and aggressive treatment
with morphine or by “terminal sedation,” if
necessary, to eliminate suffering. Physicians
often are reluctant to give morphine or other
narcotics even to dying patients. But times
are changing. Physicians now have less to
fear legally from giving large enough doses
of morphine to relieve suffering of dying
patients, even if the drug might shorten
life slightly, which is actually unlikely.
“Addiction” with large doses of narcotics is
not an issue in dying patients because the
drug is being given for a medical, not a
social, need.
However, even today many physicians
will not voluntarily give enough morphine to
quell all pain. You must plan on asking for
more pain relief if you aren’t getting enough.
This takes some assertiveness but more and
more physicians will respond if asked. Also,
the family must be ready to jump in and ask
for—insist if necessary—better pain relief. If
morphine cannot accomplish adequate
symptom control, as is rarely the case, it is
ethical and legal for a physician to sedate a
dying patient to unconsciousness so as to
eliminate all suffering. Death ensues for any
patient receiving this “terminal sedation”
when (also with patient and family request)
fluids and nutrition are simultaneously withdrawn.
As with other aspects of end-of-life
medical care, you need planning and joint
decision-making with your family and physicians
to achieve these treatments. If your
doctor or hospice nurse knows in advance
that you want aggressive and maximal pain
relief, you will likely get it.
PEACEFUL DYING
Figure out your goals for peaceful dying and
prepare for it. Be in control and ask your
family and doctors to understand your goals
and help you attain them. To have peaceful
dying you should connect with your loved
ones. Gather them around you and tell them
how much you love them. Settle any unfinished
business, interpersonal or otherwise.
Seek reconciliation, if appropriate. Ask your
loved ones for forgiveness and give the same
to them. Seek spiritual peace and readiness in
your way. Say good-bye.
Bear in mind that although these nonphysical
aspects of peaceful dying are as
important as the physical ones, a dying person
in physical pain or distress cannot
achieve personal or spiritual peace or closure.
If you are a loved one, help the dying
person reach her goals. Be sure she has
enough pain relief to do what she needs
to do. If suffering worsens, take charge in
asking the medical personnel for better
control. Hold her hand and tell her you’ll
miss her but it’s all right if she leaves you.
Say good-bye.
Things are changing—you can do it.
Thomas A. Preston, M.D. is the author of Final
Victory, Taking Charge Of
The Last Stages of Life
Facing Death On Your Own
Terms, published by Prima Publishing (October
2000).
Preston is professor of medicine at the
University of Washington. Although he has
retired from active practice, he continues to
teach classes to medical students.
He has appeared as a medical expert on
numerous national television programs including
“60 Minutes,” “Good Morning America,”
“CBS Morning News,” “NBC Nightly News,”
“ABC Evening News,” “McNeil/Lehrer Report,”
“Face The Nation,” “Nova” and a PBS special on
health. His articles about medicine have
appeared in publications such as the New York
Times, Newsweek, Atlantic Monthly, Washington
Post and Reader’s Digest.
He has written two other books, Coronary
Artery Surgery: A Critical Review regarding the
overuse of operations and The Clay Pedestal
which focuses on the medical profession.
Dr. Preston lives in Seattle, Washington.
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