Dying Well
cindy
was only 30 years old when she was
diagnosed with stage
4 pancreatic cancer
multiple organs had already been invaded
by the time it was discovered
she was far too young to die and so her
family and friends rallied around her as
they pledged to fight this
although the oncologist knew that in her
particular case
treatment would be futile he offered
chemotherapy
i mean cindy and her family said that
they wanted aggressive care and they
were willing to try anything
so what choice did he have
cindy was not prepared
for the pain and ability that
accompanied her chemo
she found herself becoming more and more
isolated
from the things that she enjoyed and the
people that she loved
except for her mother who quit her job
so she could take
cindy to all of her appointments and
render her care
cindy was an outdoor enthusiast hiking
biking and camping were her favorite
pastimes
people told me that cindy and her
friends
spent more time outside than they did
indoors
but that life was no more
sure cindy’s friends would call and
visit from time to time
but their passions had not changed
they remained outside enjoying the
splendor of creation
while cindy wasted away in hospitals
her bed beside the toilet in her home
when the chemo experiment had failed and
cindy had lost 30 pounds
all of her hair and connections to just
about everything in life that mattered
to her
her family decided it was time to enroll
in clinical trials
and pursue alternative treatments
now insurance didn’t cover this
so her parents wiped out their savings
account
they dipped into their retirement and
took cash advances from their whole
life insurance policies i mean cindy
was their only child fighting her death
felt like the only
option that they had
travel was now required and that was no
small feat
in order to counter the cost cindy’s dad
picked up extra shifts so now she lost
connections with him
and her local community
after a few weeks cindy and her mother
finally returned home she was so
weak and frail that her dad had to lift
her out of the car
carry her into the house and lay her
down on the sofa
a few hours later cindy
stopped breathing 9-1-1 was called and
although cpr resulted in several
rib fractures the paramedics were able
to get a heartbeat back
cindy was intubated rushed to the
hospital and admitted into intensive
care
where she died about a week later
none of the treatments did anything
to slow down the progress of her cancer
in fact they probably hastened her death
what they certainly did do was
compromise the quality of life that she
had
during her remaining months on earth
now this was no surprise to those in the
healthcare industry who’ve taken care of
lots of people just like cindy
or to those who would peruse the
literature regarding the particulars of
her cancer
as a nurse practitioner i have taken
care of far too many people just like
cindy
so i began asking students at the
university where i taught to describe
their ideal death
i said if you were told you only had six
months to live how would you want to
spend
your remaining time on earth
in all of these years no one has
described a death like cindy’s
in fact nobody has said they wanted to
die in a hospital either
yet this is the type of bet death most
of us will experience
instead of creating videos and writing
letters to family and friends
going on vacations and creating memories
we will endure treatments that may make
us sicker than the actual condition
we will spend countless hours in waiting
rooms
hospitals our bed and in the bathroom as
our stomach complains
about the course we have chosen
what role do health care providers play
in helping people make sound decisions
at the end of life
do we in healthcare ever offer
treatments that we know will not work
and that carry the potential for harm
and suffering
how often do people receive a antibiotic
prescription
for the cold virus
according to the cdc one in three
antibiotics that are prescribed are
unnecessary
now that clinician knows the antibiotic
isn’t going to work
but a very tired mother
took off work paid a 40 copay to bring
in her sick child and she does not want
to hear this is just a cold
it is far easier to just
write the script for the antibiotic than
it is to explain
to a very tired and stressed individual
we do not have a quick fix
pill to remedy this situation
now antibiotics carry risk risk to the
individuals and society
especially when they’re not indicated
but now what about when the stakes are
higher
and someone’s facing a terminal
diagnosis
the stages of grief are pervasive and
almost
universal some people never get from the
denial to the acceptance phase and for
those that do
it generally takes some time
so what do clinicians do in the meantime
what about in a case like cindy when she
and her family said
don’t give up we’re willing to try
anything
what do you do then
although each case is unique we do have
the benefits of research to help us
when we’re engaging in these difficult
conversations
you can read about one very large study
in the journal of pain
and symptom management of almost forty
five hundred
medicare beneficiaries in two thousand
seven
researchers were looking at clients
who’d been given a terminal diagnosis
and died within a three-year time span
they were interested to discover if
those who chose aggressive care
to fight this terminal condition lived
longer than those who chose comfort care
and hospice
interestingly enough those who chose
comfort care lived an average of
29 days longer
in the journal cancer in 2016 you can
read about a study
in again involving terminal clients
who were on palliative care and
researchers looked at whether folks who
chose to die in the hospital
lived longer than those who chose to die
at home
those who chose a home death lived an
average of 13 days longer
i really wonder if when folks
are facing a terminal condition if
number one they’re told they’re terminal
and number two if they’re told if you
choose comfort care and focus on
that there’s evidence you may live
longer
one of the most important questions
i ask my clients who are facing a
terminal
condition is this
what are the goals of care
and then i must ascertain who and what
is driving this
so often my clients will tell me they
are sick and tired of feeling sick and
tired
and they no longer want to endure the
treatments that they feel are making
them feel sicker
but their family their friends and
sometimes other clinicians
are telling them to keep fighting and
not to give up
what is the cost of this approach
for cindy and her family
the physical emotional spiritual
and financial cost were beyond
devastating
death will come to us all
this is an absolute certainty
the question is what will that look like
will we get a chance to deepen our
connections at the end
or will our battle to fight this
terminal condition result in a torturous
course
that leads us away from the things that
we enjoy
and the people that we love
now there may indeed be a time to fight
but my hope and my prayer is that it is
not at the expense of the opportunity
to really live and die well
in the end thank you