contributing
a personal anecdote on health care I was
immediately inspired to write about my
mother.My mother’s “missed” diagnosis,
her unnecessary surgery, her fight for life
after the surgery, the month in the hospital
that ended in her death, the cancer
that would have killed her regardless,
points in her life that possibly contributed
to her disease and definitely
contributed to her lack of health, and so
much more. As I started to write, I realized
I was peeling back the layers of an
onion that needs to be written for my
own health, but is not ready for public
viewing.Also, as with an onion, I was too
sensitive to the affects of the vapor to
write an article without a lot of tears.
Thus, I decided to distill my many different
experiences with health care and
hospitalization, in particular, and write
some tips.
These tips are primarily based on
three major health care events in my life
within a six month period: the surgery
and month of hospitalization of my
mother (in her late 50s) resulting in her
death, the weeks of hospitalization of my
paternal grandfather (in his 90s) resulting
in his death, and the major surgery
performed on my son (then 2 years old)
who is still alive. These events happened
in three different hospitals in the central
Illinois area. I am not a paid health care
provider, a trained medical practitioner,
nor do I play one on TV. I’m sure most of
you out there could add some suggestions
of your own and I hope that you
do. The “tips” are in no particular order.
TIPS FOR THOSE UNDERGOING TREATMENT
OR FOR THEIR CLOSE LOVED ONES:
1. Take Charge of Your Own Health.
I cannot emphasize this enough and this
really encompasses a lot of the other suggestions.
2. Ask Questions. You cannot ask too
many questions. Ask questions of your
physician, ask question of yourself,
research, talk to others, call the
nurses/doctors and double check your
understanding of medical advice, know
your medication/know your doses (okay
I got this one from the movie 12 Monkeys,
but seriously it is very important),
read books, surf the internet, try to
understand what is going on with your
body. If you do not feel up to this task,
please, please, ask someone close to you
to research for you. Which leads me to
my next suggestion.
3. Whenever Possible Have Someone
With You. Take along an advocate. I
am talking about the simple doctor’s
checkup to the stay in the hospital. It is
always good to have a second set of ears.
Your partner may think of a question
that never occurred to you. It also gives
another perspective on the event. I
accompanied my father to a cardiologist
appointment recently. My father and I
came away with completely different
perspectives on his health. After discussing
the appointment, we both came
to some middle ground. If I had not
been at that appointment, it is likely that
my father’s view of his own health would
still be based on the obviously very sick
person he saw exit the examining room
prior to his visit with the doctor. Comparatively,
my dad was feeling great.
4. Never Leave Someone Overnight
in the Hospital Alone. Really. If there is
any way to avoid leaving a loved one in
the hospital alone, please be with them.
If you are the one being hospitalized, ask
someone to come and stay with you. I
know we are all busy, but this is really
important. We all know the amount of
things that are done out-patient these
days, so when you have to spend the
night in the hospital then it is pretty serious.
I heard a nurse from a national
nurses organization say they had
arranged a buddy system for nurses who
have to spend time as patients in the
hospital. Even the nurses, maybe especially
the nurses, realize how important
it is to have an advocate with you while
in the hospital. This is especially important
if the hospitalized person is being
medicated. Let’s face it, being in the hospital
is stressful; when you are medicated
and/or stressed you cannot be expected
to make the best decisions for yourself
and your health. My family ended up
being with my mom around the clock
and oh how I wish we had planned this
from the beginning.We took shifts and it
was tough, but it was worth it. Unfortunately,
we did not do this for my grandfather
and I regret it. I discussed with the
original surgeon staying in the OR with
my son during his surgery. The surgeon
was open to this and I watched tapes of
open heart surgery to prepare me for the
event. The last thing I wanted to do was
cause problems in the OR and I trusted
the staff (obviously, with my son’s life),
but I also knew the risks and I wanted to
be there. Against my better judgment,
my husband convinced me to go with
the older, more experienced surgeon
who was not open to my being in the
OR. I did, however, stay with my son
until he was anesthetized and I was in
the room as he woke up.Other than that,
a loved one was always at my son’s side.
5. If It is Important to You, Ask for
It. My sister was spending nights with
my mother and sleeping on a very
uncomfortable chair, we asked for a
couch and received it. Since family was
with my mom as much as possible, we
quickly took over bedpan duties.. This
made my mom more comfortable,
helped out the overworked nursing staff,
and made us feel like we were doing
something. Eventually, the staff was
comfortable with our collecting linens
from the hospital supply closet so the
messy jobs didn’t have to wait for available
hospital staff. For my son, it was
important to me to sleep next to him
since I knew he wouldn’t be able to get
up right away. I demanded a regular
sized hospital bed and I was in bed with
him as he was waking up post-op until
we left the hospital. Some of the hospital
staff was supportive, some were not, but
I stood my ground. It made a difference
to me and my son and I believe it aided
in the healing process. Even during my
son’s birth, I wanted to keep my own
special nightgown on.. The nurses said
“no” for whatever wonderful hospital
protocol. Luckily, I had my doula (again,
an advocate) who could talk to the staff
while I was concentrating on my contractions
and explain that in the case of
an emergency they could tear the thing
to shreds. I birthed my son in my own
warm nightgown. Maybe not as important
as the other situations I noted, but it
meant something to me.
6. You Deserve to Be Treated with
Respect. After a particularly tough day
at the hospital with my mom, I came
home with my little 2-year-old son and
made signs for my mom’s room.Most of
the signs were these tips or variations of
them. The next day I took them into my
mom’s room, read them to her, and posted
them on the walls. They were for her,
but also for the hospital staff. I wrote
them in first person as though she was
telling herself and the staff, “I deserve to
be treated with respect at all times,” and
everyone read them. I received a lot of
comments. During her month in the
hospital, mom was not always treated
with respect, not even close. Some people
on the staff were kind, some were
clueless, some seemed to hate their jobs
and take it out on the patients, and some
seemed to border on sadistic.When people
(and there were so many people)
who cared for my mom would ask what
they could do, she would answer, “Bake
something for the hospital staff ” and
they did. I watched some of the nurses,
who had complained in front of my
coherent mother how heavy she was and
how much they didn’t want to move her
to change the sheets, eat the baked goods
and I would almost wretch. I would listen
to my mom tell her primary care
physician (who happens to have also
been her surgeon) how he was “the best
doctor in the world” (okay she was on
morphine that day, but still) and I would
feel so ill. Sure, treat the staff well, they
do deserve it, even the most clueless
among them. Caring for people is tough,
especially in our current health care system.
But, please don’t forget that you
deserve to be treated with respect at all
times. If this respect is not automatically
shown, demand it!
7. Listen to Your Body. You know
your body better than anyone else in the
world. Listen to it. Your body tells you
when something goes wrong. There are
all sorts of clues to your health communicated
to you through your amazing
body. Listen. Then, if something feels
wrong, let your loved ones and your
health care providers know. If those
around you are not listening or minimize
your feeling, talk to someone else.
Get another physician. Now you are listening
to your body, and you deserve to
have someone listen to you.
8. Get a Second (Third, Fourth, etc.)
Opinion. Do not be afraid to get a second
opinion. I kept asking my mom to
get a second opinion prior to her
surgery, but she eventually confided to
me that she was “too tired”. Bells and
whistles should have been going off for
both of us, but I didn’t push enough or
listen enough or take her to another doctor
myself. In the end, she still would
have died. The difference might have
been that she died more comfortably at
home without enduring some of the
unnecessary pain. Maybe it wouldn’t
have changed a thing. I will never know.
When my son’s pediatric cardiologist
suggested open heart surgery for a child
who was showing no symptoms of hiscongenital
heart defect, you better
believe we got a second, third, and
fourth opinion. It wasn’t a matter of
trust, I really have liked most of the
medical staff who have worked with my
son, but a matter of taking charge of
one’s health. Obviously, we went ahead
with the surgery, but after traveling to
different hospitals around the state we
were better equipped to make educated
decisions on where, who, how, when,
and why the surgery would be performed.
9. Always Get a Copy of Medical
Records and Test Results. I cannot tell
you how often I have seen patients carry
their medical records around the hospital
to another doctor and say something
about wanting to take a peak at them.Most of the time they are all sealed up
and the adults look down at the package
with a guilty look on their face when
they say they would like to read the “forbidden”
information within. Reality
check. This is your life, your information,
your records and you are entitled to
read them. In fact, I would say it is your
duty to read them. Ask for a copy of your
medical records and always get a copy of
test results. This is information that
helps you take charge of your health. Yes,
they may charge you a copying fee or
threaten to charge you. Yes, the information
quite often sounds like someone
writes them just for the court to read in a
malpractice suit. Yes, some of the information
will make little sense to you. You
will, however, learn quite a bit, you will
have a reference to refer back to, you
might notice that you understood something
differently than the doctor worded
it in her/his notes. Quite often I will read
the records and ask a question of my
physician based on these records and
this leads to better communication and
understanding on both sides. With the
small amount of time allotted to physicians
to spend with their patients these
days, it is not surprising there may be
misunderstandings or lack of communication.
10.Have Someone Keep Track of the
Bills. Heath care can be very costly.
Some of the suggestions I make here
could sound even more costly. Many
people don’t seek a second opinion due
to finances. Many people stay with a
doctor who doesn’t listen to them due to
the HMO coverage. You are busy trying
to heal yourself or looking out for your
loved one so assign one of those wellmeaning
“what can I do for you” people
to researching financial aid, or talking
with your insurance company, or looking
into alternative options for longterm
care, or whatever it is that you
think might help. Sure, the insurance
company may only speak to a family
member, but friends can do some leg
work for you. Looking at an itemized bill
of a month stay in the hospital makes
you think about taking your own tissues
with you during your next hospital stay.
Nothing is worse than “sticker shock”
after a loved one dies. We actually had
staff sit the family down and say how
hard they were working with the insurance
company to “let”my mother stay at
the hospital when I was fighting as hard
as I could to take her home. It was, to say
the least, surreal.
A FEW TIPS FOR THOSE FRIENDS OR
ACQUAINTANCES OF PEOPLE WHO ARE
HOSPITALIZED:
1. Do Something. I know, we all have
been through that feeling of “What
could I do?” but just do something. Ask
what you can do, but if told nothing, do
something anyway.Anything. Just do it! I
cannot tell you the loneliness I felt during
my mother’s hospitalization. I would
drive to the hospital every day and think
about all these people driving to their
destinations and they had no idea that
the most incredible person was lying in
an inadequate bed dying while I felt
alone and helpless to do anything to ease
her transition. I would drive home and
once in a while I would find on my
doorstep a wonderful home-cooked
meal. I have to say this person is not a
long-time friend or someone I even see
very often, she is not someone who
cooks often, and my family could be
considered hard to cook for due to our
dietary/life choices which do not match
those of my friend. The friend who left
these occasional meals brought indescribable
light into a very dark time in
my life. I am so grateful to her and I love
her so much for “just doing”. So many
people in our lives stayed away and didn’t
know what to do. I don’t fault them, I
did fault them, but now I understand. It
is tough. My friend with those quiet
meals left on the doorstep with no question
or fanfare, she is compassion.
2. Send the Card. Go ahead, pick up a
card and send it to the hospital, to the
home, to the family, to the person
undergoing health care. It will make a
difference to someone. We wallpapered
my mother’s hospital room with cards
from literally hundreds of people. We
kept the cards. Sorry, I didn’t get thank
you cards out to all of you like I had
envisioned. I love you all, especially
those of you I never knew who chose the
perfect card. My son still looks at the
cards he received. My grandfather never
received one.
3. Talk About It. If people are fine,
there is a hospitalization, or if they die.
Talk about it. Don’t pretend the entire
thing didn’t happen. I love the kids who
came up to my son and asked about his
scar (he is fond of going topless). I
explained that a hole in his heart was
patched by the same material their raincoats
are made out of and they nodded
their heads as if this is the most logical
thing in the world, they showed off their
scars from skinned knees and went
about their happy play. The adults were
hanging on every word, but they didn’t
have what it took to ask about it themselves.
We have so much to learn from
children.
For all those skeptics out there: Yes, I
am available to accompany you to your
doctor’s visit, call me if you want me to
spend the night in the hospital with you,
let me at your health care bills, and I’m
sure I can whip up a hot meal. Even if
you just want to talk about it. Drop me a
line.
linda.evans@erols.com
Linda Evans is a Champaign
native. She lived in
the Washington DC area
for several years before
serendipitously moving
back to the C-U area two
years prior to her mom’s
hospitalization. She is a
‘retired’ computer consultant.
Currently, she is a full-time homeschooling
mom/volunteer/activist.