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