Transcript Book Club: Using The Portrayal Of Neuroscience Nursing In

Book Club:
Using The Portrayal Of Neuroscience Nursing In Contemporary
Non-fiction To Improve Practice
Melissa V Moreda RN BSN CNRN Susan Chioffi RN MSN CCRN ACNP-BC
Flying Lessons
 Author: Joan Grady-Fitchett
 Perspective: straightforward first
person account
 Neurologic issue: Parkinson’s disease
Flying Lessons
 Living a life that is not defined solely by a chronic illness
 Determined woman with resources searches for best therapies
after she is diagnosed with Parkinson’s disease
 The doctor who first diagnosed her makes a negative impression
 Does not let her diagnosis take over her life
Always Looking Up
 Author: Michael J. Fox
 Perspective: upbeat straightforward first
person account of life with a chronic
illness
 Neurologic disorder: Parkinson’s
disease
Always Looking Up
 Second of his memoirs dealing with living with Parkinson’s
 Diagnosed very young
 Goes into detail about adjusting his medications to account for the “on/off”
phenomenon so that he can work and get through a day
Always Looking Up
 “…the shuffling, mask-faced Mike Fox that they would encounter…”
 His children refer to him being “Shaky Dad”
 His celebrity allows him opportunities to speak about PD, to raise money for
research into treatments and possible cures that he would not otherwise have
Life in the Balance
 Author: Thomas Graboys,MD
 Perspective: first person account of life
with chronic illness
 Disease: Parkinson’s disease and
Lewy body dementia
Life in the Balance
 Physician who was still in prime career years develops Parkinson’s w/
dementia
 Looks at his initial denial that he had a serious illness and need to retire
once he was diagnosed
 Speaks to both the science and the human side
Life in the Balance
 “Nothing is second nature to me any more. No task is too simple, no activity
so routine that I can do it without forethought.”
 “I lie entombed in my own body for ten or fifteen minutes…..until enough
synapses can spring into action to allow me to move.”
Life in the Balance
 Describes various symptoms such as visual disturbances, mental lapses,
vivid nightmares
 Talks about carrying on as best as possible
 Very distressed by how difficult PD makes public activities i.e. putting on
jacket and freezing up, tremor worse under pressure, feeling like people think
he must be drunk because of how he’s walking and moving
Life in the Balance
 Double-edged sword of dependence
 Hates that people need to do things for him
 Life is made easier when family and friends help with/perform some ADLs
 Used to reread his CV to bolster his self-esteem
The Spirit Catches You and You Fall Down
 Author: Anne Fadiman
 Perspective: straightforward third
person
 Neurologic disorder: Hmong
child’s intractable seizure
disorder
The Spirit Catches You
 Looks at how cultural misunderstanding “snowballed” disastrously
 Author spoke to physicians, not nurses, though the child involved was
repeatedly hospitalized
 One way to gauge opinion of Hmong: staff feeling about foods brought for
hospitalized family
The Two Kinds of Decay
 Author: Sarah Manguso
 Perspective: relatively
straightforward first person
 Neurologic disorder: Chronic
Idiopathic Demyelinating
Polyneuropathy
The Two Kinds of Decay
 Looks back at the several years of intermittent hospitalizations related to her
CIDP
 Good descriptions of patient’s experience of medical procedures: central line
placement, LP, MRI
 Mentions 2 favorite nurses:
• The pheresis nurse who always brought wintergreen candies to help with
the bad taste from the albumin used for pheresis
• The one who was really good at wiping her butt
The Two Kinds of Decay
 “My symptoms were so unlikely, by the book, that despite
my reports of them, they were assumed not to exist.”
 “An autoimmune disease invokes the metaphor of suicide.
The body destroys itself from the inside.”
Thaw
 Author: Monica Rae
 Perspective: fictional account
 Neurologic disorder: protagonist
has Guillain-Barre Syndrome
Thaw
 Author is a physical therapist
 Captures the roller coaster of emotions, pain, frustration, fatigue,
dependence and uncertainty of GBS
 Physically disconnected family
The Butcher’s Daughter
 Author: Sandra Lesher Stuban, RN
 Perspective: straightforward first
person account of life with chronic
degenerative illness
 Neurologic disorder: ALS
The Butcher’s Daughter
 Determined, quickly advancing 38 y.o. Army nurse develops weakness 3 months
postpartum, Worked 2 years after diagnosis
 Discussion with Joan, RN “When you lose an ability, you must grieve the loss and
then move on”. Life changing
 MICU: did not practice primary nursing/continuity of care- not establish rapport,
routines, thankful RT did
• Why don’t we????
 Trach/PEG discussion early on for son’s sake,
• questions it 3 months later as completely paralyzed, has lost inner spark
The Butcher’s Daughter
 Joan- home nurse educator for Home Based Primary Care- provided info and resources to
keep her independence
 Caregivers:
• Learned patience, tolerance, acceptance, gratitude, appreciation and recognition of every
small act of kindness that she used to take for granted
• 3 categories:
− 1. light/feather touch
− 2. normal touch ( MOST)
− 3. heavy/rough- are they this way with themselves?
– leave a profound impact and long lasting impression
The Butcher’s Daughter
 Joined online ALS support group, realized that she had much to offer “nurse in me
came alive again”
 Served on the board of Sigma Theta Tau, 4 years, most members never knew she
was a vent-dependent quad, published multiple times
 Secret of her Success:
• Hired caregivers
• Became computer savvy, online chats, resources
• Had necessary equipment
• Maintained high standards
The Butcher’s Daughter
 Hi Melissa,
 Thank you for your kind note. I'm glad you found my book useful. That was
my whole purpose, to use myself as an example to benefit others.
 Good luck and take care,
 Sandy Stuban
The Diving Bell and the Butterfly
 Author: Jean-Dominique Bauby
 Perspective: dictated first person account
 Neurologic disorder: locked-in syndrome
following a stroke
The Diving Bell and the Butterfly
 Intense Sensory Input: bath, the pier, repositioning, noise
 Lucky Day:
• tube machine beeping ½ hr- inane nerve wracking Beep, Beep, Beep
• sweat unglued tape that keeps eyelid together, stuck eyelashes tickling his pupil
unbearably.
• Urinary cath detached, drenched
• Hums while awaiting rescue…The Nurse arrives, turns the TV on
Vivid Descriptions of Fantastic Memories
Nursing: gloomy lethargy of Sat night drinking coupled with regret of missing the family
picnic.
The Diving Bell and the Butterfly
 Nursing: 2 kinds
• 1. The Majority: not dream of leaving the room without 1st attempting to
decipher his SOS messages
• 2.The Minority: takes their getaway pretending not to notice his distress
signals
 Shaving event, every time he thinks of his labor of love for his dad on their last
gathering before both becoming locked in (him with his stroke, dad 92 yo not
able to come out of apt.)
 Nicknames for Nurses: Blue Eyes, Big Bird, Elvis, David Bowie, Rambo,
Terminator
 Mid-dream: Flashlight full on face, “You want your sleeping pill now or shall I
come back in an hour?”
.
The Diving Bell and the Butterfly
 At first, nurses seen as jailers, accomplices in some awful plot. Would
cheerfully have killed them.
 As time went on, he got to know them better.
 They carried out as best as they could their delicate mission:
• to ease our burden a little when our crosses bruised our shoulders too
painfully.
My Stroke of Insight
 Author: Jill Bolte Taylor
 Perspective: straightforward first
person
 Neurologic disorder: Left MCA AVM
rupture
My Stroke of Insight
 Author is a neuroanatomist
 “Having stroke, panic, next moment “Wow, this is cool”
 Confrontation with inner commanding voice to “GET UP”!!!, hard to
concentrate, euphoria
 “Answer this, squeeze that, sign here” SLOW DOWN!!!! I can’t
understand you! Be Patient!! I am in here, please come find me!!
• Grateful to medical professionals who stabilized and gave another
chance of life
− HOB elevated- “thanks, I could not determine body position, where it
began and where it ended, I was one with the universe”
My Stroke of Insight
 Packages of Energy
• Dr/Nurses “massive conglomerations of powerful beams of NRG that came/went”
• Attentive RN-Made eye contact, Naturally felt safe, provided healing space
• Other RN- no eye contact, brought tray with jello and milk, neglected that she
could not open the food she desperately wanted to consume
− OBLIVIOUS to her needs, raised voice when spoke not realizing that she
wasn’t deaf. Lack of willingness to connect. SCARED Jill. Did not feel safe
My Stroke of Insight
 Senses
• Inability to make sense of sound, all is chaos/noise
• Inability to see 3D, color, not distinguish clear boundaries
• Smell: overwhelming, amplified
• Sensation: unable to perceive temp, vibration, pain, proprioception
• light= uncomfortable, pen light caused brain throbbing in agony
• Words, no meaning, focused on nonverbal: facial expressions, voice
tones, how they held bodies as exchanged information
My Stroke of Insight
 Saddened by the medical community not knowing how to communicate with
someone in her condition
• #1 Disabler in US
• 4x mores strokes in L hemisphere
• Wanted focus on how her brain was working, rather than their
criteria/timetable
 Forty things I Needed the Most
My Stroke of Luck
 Author: Kirk Douglas
 Perspective: straightforward first
person
 Neurologic disorder: ischemic
stroke
My Stroke of Luck
 “Only a small stroke” (expressive aphasia, facial weakness, slurred speech, R side
weakness)
 Tired, home hospital bed = cocoon
 Depressed, contemplates suicide, searches for happy memories
• Inspired by others with disabilities helping others
• Jim MacClaren: stronger with adversity
 Surprised by the amount of time of recovery, how do people actually learn English?
 Well meaning sympathy can be tempting, but turns you dependent and an invalid
 Operator’s Manual
My Year Off
 Author: Robert McCrum
 Perspective: first person account
 Disorder: stroke (MCA/BG)
My Year Off
 Previously healthy man in his early 40s has a stroke
 “For some unknown reason, I experienced no anxiety about my condition,
just irritation and puzzlement.”
 “ I had no inkling of how ruthlessly I had been disconnected from the
world of appointments and obligations.”
My Year Off
 The doctors refer to his stroke as a cerebral insult: “ I could not prevent
myself imagining rogue neurons viciously hissing ‘Your mother is a water
buffalo” to my sensitive cortex.”
 “Every few hours a team of three nurses would turn me over in bed, as if I
were a slow-cooking roast.”
My Year Off
 Uses excerpts from journals both he and his wife kept
 Also includes information about stroke and its underlying causes while
doctors try to determine the cause of his
 Wrote book because much of what he could find was about much older
people and he thought that there were different concerns in people his age
My Year Off
 Remembers the kindnesses of various nurses
 Talks about no one seemed to understand how very exhausting it was in the
early months
 Talks about how unpleasant it was to need help with toileting “How low and
helpless can one become.”
To Love What Is
 Author: Alix Kates Shulman
 Perspective: straightforward second
person account about her husband
 Neurologic disorder: traumatic brain
injury
To Love What Is
 Protecting her husband early in the course of his injury from falls. “Except for
the lowly aide, who lacks authority, not one person on the floor was aware
that Scott needed guarding. And not one person besides me seems
distressed about it. Each one blames someone else.”
To Love What Is
“ The terrifying sundowning that overcomes him when dusk descends, as if
he’d been bitten by a vampire, leaving him plagued by hallucinations and
madness.”
Looks at ups and downs of both caregiver and person with TBI in first year
after injury.
A Three Dog Life
 Author: Abigail Thomas
 Perspective: straightforward
second person account about a
relative
 Neurologic disorder: husband’s
traumatic brain injury
A Three Dog Life
 “But in the days following the surgery Rich enters the stage known as
“Inappropriate Behavior.” This is euphemistic for the anger and irrationality
that is part of the process of recovery.”
 “They tell us again there will be differences in Rich’s personality….I have
never processed this information.”
 “He is there, and not there”
A Three Dog Life
 He cannot be cared for at home because of his memory issues and
behavioral problems
 Nurses at various times gently help her with the new reality of her life
 “ I took this to mean that in the nicest way possible I was being told to Get a
Life.”
 “I kept forgetting that I actually couldn’t take care of him.”
Where is the Mango Princess?
 Author: Cathy Crimmins
 Perspective: lightly humorous second
person account about a relative
 Neurologic disorder: husband’s
traumatic brain injury
Where is the Mango Princess
 Boating accident occurs
 How, after finding out how difficult it is to get treatment for a brain injury through most
HMO insurance plans
 “Coma, it turns out, is not the worst thing in the world.”
 Vivid descriptive account of TBI hell, emergence from coma, escalating up Rancho
Los Amigos scale
 Frustrations with family dynamic changes
 Humor
 Maureen RN:
• Coma: Is wading out of deep water, 1st the tip of your head. Then other
features then come out slowly, slowly out with great difficulty as the
water is heavy and is hard to get out.
• Pay attention to your daughter now, as you can’t do anything for your
husband at this point.
In an Instant
 Authors: Lee and Bob Woodruff
 Perspectives: straightforward
second and first person account
about his injury
 Neurologic disorder: his workrelated traumatic brain injury
In an Instant
 Chronicles Bob’s and Lee’s life, adventure throughout his amazing peak
performance as a journalist and Iraqi war coverage resulting in TBI
 “The walking wounded”, signature wound of this war, Bob the typical patient
In an Instant
 Nursing:
• preparing wife for what to visibly see upon first visit, very calm,
knowledgeable, immediately trusted her.
• presence in family intimacy: daughter’s kissing game, holding sedation
for better exam, “I love you”
• really marked Bob’s progress. “ I really loved these nurses.”
• Preparation of what’s to come: Vivid descriptions of coma emergence
• Creative solutions for dealing with her husband
In an Instant
 Multiple, complicated surgeries
 Extreme gratitude for nursing/medical staff
 “It’s a long road”, “The brain is like a computer rebooting”, “It’s not a sprint,
but a marathon”
 Coping with brain injury emergence: bed, walking around the unit, aphasia
 Bob’s first memory:
• waking up with excruciating pain”as if skull were to split open if I moved
too much”, lasted until skull fixed, 4 months later
• Bob being frightened of the dark, nurses being present
In an Instant
 Lee balancing new roles of single mom, spouse uncertainty, caregiver,
family dynamic changes, the struggle to be with husband and kids,
healthcare facility evaluator, financial planner
• Amazed, even with having great medical insurance, the headaches
that go along with managed care, especially in wake of TBI
 Transitioning home,Adopting different ways of doing things post TBI
 Bob Woodruff Family Fund for TBI
• invisible scars of TBI: cognitive and behavioral impairments
 Acknowledgement: “We are in awe of all that you do”
The Fine Line
 Author: Margaret Watkins
 Perspective: both autobiographical
and second person
 Neurologic disorder: SAH
The Fine Line
 She was always cold, though staff were comfortable
 Minor discomforts were disproportionately annoying
• Skin: dry, felt as if molting
• Breath smelled terrible, teeth felt as if wearing sweaters, lemon swabs left
mouth feeling like bottom of birdcage
 Gentle spongebaths were painful over sites of previous IV’s, still appreciated
cosmetic enhancement
 Sounds resonant/amplified
 Wanted: SLEEP!!!
The Fine Line
 Upon leaving ICU, tried to express gratitude to nursing for participating in her
preservation, seemed like insufficient compensation for their tireless
dedication
 Fear of leaving ICU, had a security blanket, now what??
 Zealous and handsome nurse took on personal challenge of getting Margaret
fatter and more upright
 Paranoia: hard to be civil to the night shift as she misinterpreted their
actions
The Fine Line
 Shower: most memorable in her life
 Nurses: angels of mercy, one had a benign tumor, recognized comfort
measures and moral support, esp in the darkness of night
 Narcotic w/d, sleep deprivation, improving temp instability: nurses present
Curveball: When Life Throws You a Brain
Tumor
 Author: Liz Holzemer
 Perspective: first person
 Neurologic disorder:
meningioma
Curveball: When Life Throws You a Brain
Tumor
 The shocking news, the inundation of questions
 “upstairs roommate”
 Martin, nurse in ICU, cared for over multiple days, “I can’t pinpoint why, but
Martin made me feel it would be ok and I would get through this”
 Unprepared for the amount of sleep that she needs, “Zombie-like”, AED’s
sluggish, fatigue
Curveball: When Life Throws You a Brain
Tumor
 Frustration of battling invisible deficits, of others minimizing her side effects.
 Meningomommas-hope, friendship, laughter
 Just do it”, reinvent yourself!
 Helpful guidelines/brain tumor manuals, ?’s To ask the neurosurgeons, what
to expect after brain surgery
I Had Brain Surgery, What’s Your Excuse?
 Author: Suzy Becker
 Perspective: lightly humorous
first person
 Neurologic disorder: seizures
and a brain mass
I Had Brain Surgery, What’s Your Excuse?
 Early part of book is a good illustration of denial when she recounts how she
‘explained away” what would eventually be diagnosed as seizures
 Notes that no one, not even medical personnel, likes to use the word ‘cancer’
 Talks about how medical personnel talk about what’s going on right then but
rarely relate it to a whole treatment plan
 Mentions various nurses who were helpful to her
 Aphasia from the perspective of the patient
Still Me
 Author: Christopher Reeve
 Perspective: straightforward first
person
 Neurologic disorder: cervical spine
injury resulting in quadriplegia
Nothing is Impossible
 Author: Christopher Reeve
 Perspective: first person reflections on
life post injury
 Neurologic disorder: cervical spine
injury resulting in quadriplegia
Nothing is Impossible
 “my immediate reaction was that such a life was unacceptable, even
though I knew absolutely nothing about living as a vent dependent
quadriplegic.”
 “usually I had these conversations late at night with the residents and
nurses on duty in the unit.”
 Tries to use humor to lighten situation
Nothing is Impossible
 Talks about logistics of going places: the wheelchair, hospital bed,
supplemental oxygen, voltage converters, battery chargers
 Talks about special wheelchair, specially equipped van, need to remodel
house
Nothing is Impossible
 Initially smell and taste of food was “repulsive”
 Refers to his ongoing medical issues: skin breakdown, infections,
pneumonia, GI issues
 Used his celebrity for advocacy
Rescuing Jeffrey
Author: Richard Galli
Perspective: Straightforward first
person account of his and his family’s
struggles in the first days after his
son’s cervical spine injury
Rescuing Jeffrey
 Talks about all the support from family and friends
 Talks about how much everyone cried as they waited to see if Jeffrey
would stabilize
 Wants be good father to his injured son
Rescuing Jeffrey
 “Everyone tells us about Option One. They tell us a lot about Option
One. He goes into the system. He gets put in a wheelchair. He gets
put on a respirator. He stays that way forever. Why is no one asking
us about Option Two?”
 “What is Option Two?” Dr Bodner asked us.
 “Option Two is we terminate our son’s life.”
Rescuing Jeffrey
 Jeffrey was 17 year old who took far more joy in physical activity
than intellectual pursuits
 Hospital personnel very upset when family broached topic of
withdrawal of care
 Family is very worried about how future will play out, who will
care for Jeffrey, how will he feel about everything
 Likens the eventual decision to being drawn down a River,
carried along by momentum.
Rescuing Jeffrey
 “This is the story of how a family-my family- first cheated death and
then flirted with death over the next ten days.”
 His son Jeffrey dove into a swimming pool, struck his head and
sustained a cervical spine injury. He had to be resuscitated after he
was pulled from the pool so in the first 48 hours, it was not clear if
there was also brain damage with which to contend.
Don’t Worry, He Won’t Get Far on Foot
 Author: John Callahan
 Perspective: darkly humorous firstperson account
 Neurologic disorder: cervical spine injury
resulting in quadriplegia
Don’t Worry, He Won’t Get Far on Foot
 Looks at how he went about making a life for himself after a drunken
MVC leaves him with a C5-6 cord transection
 Had much better relationship with nurses’ aides in ICU than with
nurses
 Went to Rancho Los Amigos for his spinal cord rehab
 Learned the most from other patients
Don’t Worry, He Won’t Get Far on Foot
 “adopted quadriplegic recovering alcoholic cartoonist”
 “The nurses remembered me, later on, as pretty feisty.”
 [in the ICU]..”the days and nights ran together with none of the
psychological relief that comes from a real sleeping-and-waking
cycle.”
 “I couldn’t get used to the lack of sensation….I felt like a floating
head.”
 “People who acted like I was a human being were scarce.”
A Whole New Life
 Author: Reynolds Price
 Perspective: straightforward first
person
 Neurologic disorder: spinal cord
tumor/paralysis
A Whole New Life
 “In all my eventual hospital time, I never encountered better nurses than the
no-nonsense yet merciful women who worked Intensive Care round the
clock.”
 Chronicles his deteriorating mobility even as treatment progresses
 Talks about the pain which becomes chronic (and which will increase over
time though that is not chronicled in this book)
 Speaks eloquently to topic of when and how doctors should share news
about prognosis with patients
 Talks about specific doctors and the quality of his interactions
Staff book club
 Choice of several books
• Staff would vote on which to read in coming year
 Set up quarterly discussions
• On-line group for hospital based staff
• Meet over coffee for clinic based staff?
 Moderator to provide directed questions and monitor
discussion
 Could be used in evaluations or clinical ladder
Staff book club
 Decide: theme for year or variety of stories
 Consider mixing patient memoirs with pertinent studies
• e.g. studies on quality of life for patients with cervical spine injury and
patient autobiography
THANK YOU!!!!!!!!!
[email protected]
[email protected]
LIFE
42
Everything
Universe