Pam Kircher, M.D.
Balance Conference, 2002
Death is not quite the taboo topic that it
was thirty years ago, but there are still some
barriers to acknowledging death both in the
medical community and in the community at large.
Prior to the discovery of antibiotics in the
1940s, most people who got seriously ill died.
People often died at home, so most people had
seen or been affected by a home death by the
time that they were a teenager. If a person
went to the hospital, it was expected that they
would die there.
With the burgeoning technologic discoveries
of the last half of the twentieth century, the
age at which people died increased dramatically.
It began to be seen as a failure of the doctor
and, indeed, of the system if anyone died. People
who went to the hospital were expected to return
home feeling well. The actual death rate (one
per person) was ignored. Death was considered
an error on someone's part. Death was confined
to ICUs and usually occurred in isolation without
the presence of family and other loved ones
at the moment of death. An entire generation
of people grew up without ever being present
when someone died. Death became a far-off consideration,
not a part of every day life.
That was the situation in the medical profession
when Dr. Elisabeth Kubler Ross (EKR) worked
at the Chicago hospital where she began talking
to dying people. At that time, the medical profession
thought that it was "bad medicine"
to tell people that they were dying. Families
were told, but instructed not to share that
information with the dying person. People were
dying in isolation even if family members were
present. No good-byes were to be said. No "unfinished
business" was to be finished. Cheerful
masks were to be worn at all times. The dying
were uniformly depressed—a condition thought
to be brought on by the dying process itself,
not by the way that the dying were being isolated
and deceived.
When EKR spoke with the few cheerful people
who were dying, she discovered that they had
been in contact with a cleaning woman that was
familiar with death in her own family and who
wasn't afraid to let people talk about what
was on their minds. These people didn't feel
isolated and alone because they had someone
with whom they could be frank. Thus was born
the whole hospice movement in the U.S. and the
move toward being present with the dying.
The first hospice was built in the U.S. in
the late 1970s and now nearly every town in
America has at least one hospice. The understanding
is that hospice is the compassionate answer
for both dying patients and their families.
However, still, the hospice option is grossly
underutilized. Choosing hospice requires that
you recognize that, short of a miracle, your
life is in its final stages. This seems to be
more difficult for doctors to accept than it
is for their patients to accept. Even now, patients
frequently call the hospice and ask if the hospice
will call their doctors to see if they can obtain
hospice services. They somehow feel intimidated
about bringing the hospice option up to their
physicians. It is easier to call a stranger
and ask them to bring it up to the doctor. The
idea of dying as a medical failure and "taking
away hope" is still alive and well in the
medical profession. I am definitely not a proponent
of telling someone that they have a specific
time to live. I have done enough hospice work
to say that no one can predict these things.
There is way too much involved. And, I have
seen what I would call true miracles in my time
in hospice, so I never "guarantee"
a death. But I do say, if things continue as
they are going at this point, it doesn't look
as though you will live much longer. If that
is the case, are there things that you want
to do while you feel strong enough to do them?
People deserve the time to prepare for death.
The last few days, weeks, and months of life
can be the most powerful time in a person's
life as they review their lives and make sense
of all that has happened. Physicians do their
patients a disservice if they do not offer them
the support that hospice can give them and their
families so that they can have a comfortable
and productive last period of their lives.
As more and more people have been touched by
hospice care over the last thirty years, there
is beginning to be a different view of death
in the community. Most people who have observed
a hospice death have seen that death is generally
peaceful. They often feel much less anxious
about their own deaths if they have been with
a loved one at the moment of death. People who
have visited with loved ones are beginning to
see that some of our American values are not
the values that we will wish we had embraced
as we look back at our lives as we are dying.
There has been a burgeoning of books about
death and dying in the past ten years or so.
The television series by Bill Moyers, "On
Out Own Terms" was very helpful in encouraging
people to discuss their wishes with their families.
The bar association of Colorado has developed
an annual free opportunity within individual
communities for lawyers and medical professionals
to discuss Advance Care Directives with the
community and to provide an opportunity for
people to complete them at that time. If you
are not aware of an annual event like this in
your community, please contact the Bar Assn.
or ask your lawyer about it.
I believe that asking about Advance Directives
should be a part of every annual exam done by
a primary care physician. It is just as important
as a vaccination update or a stool blood exam.
If it is done in this routine manner, it begins
to bring home the message that death is inevitable,
but we can retain some control and dignity if
we plan ahead. It is a natural part of preventive
medicine. In this case, we are preventing things
being done to us that we don't want done if
we are in a position that we can't talk about
it at the time. Because not all eventualities
can be foreseen, it is important to have a durable
medical power of attorney. That should be someone
who understands your wishes and is willing to
make decisions for your health based on your
wishes (not theirs) if you are unable to express
your wishes yourselves. This implies that enough
conversation about your wishes has taken place
so that your representative can truly carry
out your wishes. These frank discussions are
a blessing to the loved one representing you
because they allow them to be clear about your
wishes and not feel guilty after they make a
decision. Without advance directives, decisions
fall to the next-of-kin that may be too upset
and overwhelmed with the situation to be able
to consider all of the options and make a decision
that you would have wanted.
In addition to encouraging hospices and advance
care planning, many communities are also instituting
volunteer programs that track people who are
not terminally ill, but who are declining physically
and may be dying in the next year or two. A
pioneer program in Gig Harbor, WA by Dr. Mimi
Pattison initiates this process by a single
question asked doctors about each patient. "Would
you be surprised if they died in the next year?"
If the answer is "no," the person
is connected with a volunteer who simply checks
on them periodically. If the person's health
declines, the volunteer may offer more help
such as grocery shopping and light chores or
companionship. They may take them to the doctor's
office if driving becomes problematic. It is
one way that a community can truly be supportive
of its members who need a little extra help.
Most of these people go on to utilize hospice
care in the last few months of life. The hospice
care option has increased in these communities.
I believe that it is not only because potential
candidates have been identified, but that people
who have received volunteer services realize
the value of team support and simply ask for
more (i.e., hospice care) when they need it.
There are several things that physicians can
do to encourage community awareness about dying
issues. They can encourage local churches to
view the "On their own Terms" series.
They can speak about hospice and advance planning
to churches and civic organizations (or ask
hospice personnel to do the same.) They can
encourage their own patients to attend the annual
Advance Care Directives sessions. They can make
ACD updates part of their annual exam. And,
finally, they can make sure that they and all
of their family members and other loved ones
have ACDs of their own. It is amazing how many
doctors have not completed their own Advance
Directives.
Community awareness about dying issues is
a reflection of the level of cultural awareness
of dying issues. We are moving toward greater
awareness, but there is still much to be done.
The practicalities of Advance Directives are
essential. The outcome will be more peaceful
deaths as people realize that their wishes are
being observed. Conversations about death and
dying among loved ones lead to a greater openness
on all topics of deep significance to individuals,
and, hence, to a sense of greater connection.
The importance of greater connection between
individuals is the great gift that the dying
have given us. Hence, our attention to preparation
for dying will result in richer lives with greater
meaning and joy.
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