Presentation to the Carle Brain Injury Symposium regarding palliative care in traumatic brain injury patients.

1. 1
Palliative Care in TBI
Michael Aref, MD, PhD, FACP, FHM
Assistant Medical Director of Palliative Medicine

2. 2
DISCLOSURES

3. 3
Disclosures
• None

4. 4
OBJECTIVES

5. 5
Objectives
• Review the definition and concept of palliative care.
• Discuss high-quality communication in context of goals-
of-care.
• Discuss traumatic brain injury as a late sign of frailty
and decline.
• Review principles of comfort-only care in cases of
terminal traumatic brain injury.
• Discuss management challenges in cases of potential
loss of acceptable quality of life.

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WHAT IS
PALLIATIVE CARE

7. 7
Questionable Origins
“The term palliative care was coined by
Canadian surgeon Balfour Mount in
1975. Palliative care is interdisciplinary
care that aims to relieve suffering and
improve the quality of life for patients
with critical, advanced, or terminal
illness, and their families. It is offered
simultaneously with all other
appropriate medical treatment. No
specific therapy is excluded from
consideration, including surgical
intervention. The indication for palliative
care is based on the need to achieve
quality-of-life goals, not poor prognosis.”

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Sufferology
• The area of medicine that deals with alleviating the
physical, mental, spiritual and familial suffering of
patients with chronic, progressive illness.
• Palliative care is concerned with three things:
• the quality of life,
• the value of life, and
• the meaning of life.
More than “there’s nothing left to do”
Doyle D, Oxford Textbook of Palliative Medicine, 3 ed.

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Palliative Care and Hospice
Clin Geriatr Med 2013; 29:1–29
www.nationalconsensusproject.org
www.nia.nih.gov/health/publication/e
nd-life-helping-comfort-and-
care/providing-comfort-end-life Palliative Care
Symptom Management of Life Limiting Illness
Curative or Palliative Treatment
Disease Management of Life Limiting Illness
Symptom burden
despite or due to
disease
modification
End of Life or
Hospice Care
Symptom Management
and Comfort Care
Untreatable disease
No longer desiring treatment
Symptom burden
increases due to
treatable disease
burden
Comfort Care is an
essential part of medical
care at the end of life. It is
care that helps or soothes
a person who is dying.
The goal is to prevent or
relieve suffering as much
as possible while
respecting the dying
person’s wishes.

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Carle Palliative Medicine Criteria
General Referral Criteria
Presence of a serious illness and one or more of the following:
• New diagnosis of life-limiting illness for symptom control, patient/family
support
• Declining ability to complete activities of daily living
• Weight loss
• Progressive metastatic cancer
• Admission from long-term care facility (nursing home or assisted living)
• Two or more hospitalizations for illness within three months
• Difficult-to-control physical or emotional symptoms
• Patient, family or physician uncertainty regarding prognosis
• Patient, family or physician uncertainty regarding appropriateness of treatment
options
• Patient or family requests for futile care
• DNR order conflicts
• Conflicts or uncertainty regarding the use of non-oral feeding/hydration in
cognitively impaired, seriously ill, or dying patients
• Limited social support in setting of a serious illness (e.g., homeless, no family or
friends, chronic mental illness, overwhelmed family caregivers)
• Patient, family or physician request for information regarding hospice
appropriateness
• Patient or family psychological or spiritual/existential distress
Even More General Referral Criteria
• If you want to do everything for your patient and they have a diagnosis
which says or means failure, they would likely benefit from a palliative care
referral.
– Symptomatic heart, lung, kidney, or liver failure
– Cancer is cellular failure.
– Stroke, dementia, neurological degenerative diseases, and
traumatic brain injury are neurological failure.
www.capc.org

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PC for TBI
0 10 20 30 40 50 60 70 80 90 100
Severity and age are predictors of mortality with TBI
Age
TBISeverity
Threshold for Palliative Care

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Palliative Presentations of TBI
• Traumatic brain injury as a late sign of frailty or decline
– The patient’s traumatic brain injury occurred because they fell from
a standing height, i.e. the geriatric patient who often has multiple
comorbidities.
• Traumatic brain injury as an acutely terminal illness
– The patient is not expected to survive and goals-of-care have
refocused on comfort-only care.
• Traumatic brain injury as “instant dementia”
– The patient with severe traumatic brain injury who could likely
survive but with significant alteration in functional baseline and
quality of life.
Three Archetypes

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HIGH-QUALITY FAMILY MEETING
COMMUNICATION TECHNIQUES & TOOLS

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Communication Components Associated with Increased Quality of Care, Decrease
Family Psychological Symptoms, and Improved Family Ratings of Communication
• Conduct family conference within 72 hours of ICU admission.
• Identify a private place for communication with family members.
• Provide consistent communication from different team members.
• Increase proportion of time spent listening to family rather than talking.
• Empathetic statements.
• Identify commonly missed opportunities.
• Affirm non-abandonment of the patient and family.
• Assure family that the patient will not suffer.
• Provide explicit support for decisions made by the family.
Crit Care Med. 2001;29:1893–1897.
Am J Respir Crit Care Med. 2005;171:844–849.
Am J Med. 2000;109:469–475.
Crit Care Med. 2004;32:1484–1488.
Crit Care Med. 2006;43:1679–1685.
J Gen Intern Med. 2008;23:1311–1317.
J Palliat Med. 2005;8:797–807.

15. 15
Family Meeting Map
Step What you say
Gather for a pre-
meeting
Let’s decide who will talk about what.
Could I propose a way to structure the meeting?
When the meeting ends, what would be a constructive outcome?
Introduce everyone
and elicit the agenda
Let’s start with introductions. My name is [x], and my role is [y].
The purpose of this meeting is to talk about [z].
Is there anything that you would like to cover in addition?
Explain what’s
happening
Tell me what you took away from our last conversation.
Could I hear from everybody?
Here is the most important piece of news…
Empathize with each
person
I can see you are concerned about [a].
I am impressed that you have been here to support [patient’s name].
Highlight the patient’s
voice
If [patient’s name] could speak, what do you think she would say?
How would she talk about what is important to her?
Plan the next steps
together
Based on what we’ve talked about, could I make a recommendation?
I’d like to hear everyone’s thoughts about the plan.
Reflect post-meeting What did we learn?
vitaltalk.org/guides/family-conference/

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Pre-Meeting
• If you do this right, someone is going to need a tissue.
• Where is the meeting taking place and is the patient
participating?
• Is the meeting place clear of distractions and can everyone
sit down?
• What are the desired outcomes?
• Who is going to moderate the meeting?
• What is each person’s clinical communication
responsibility?

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Sitting in the Right Setting
Actual and patient perceived time of provider at
bedside
1.04 1.28
5.14
3.44
0
1
2
3
4
5
6
Sit Stand
Actual
Time (min)
Perceived
Time (min)
Percentage of positive and negative comments by
provider posture
95%
61%
5%
39%
0%
20%
40%
60%
80%
100%
Sit (n = 20) Stand (n = 18)
K.J. Swayden et al./ Patient Education and Counseling 86 (2012) 166–171

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Impact of Physician Sitting Versus Standing
• 69 patient randomized to watch one of two videos
in which physician was standing then sitting or
sitting than standing:
– 51% preferred the sitting physician
– 23% standing
– 26% no difference
J of Pain and Symp Management 2005; Vol 29 (5). 489-497

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An AIDET Application
• Acknowledge
– “Nice to meet you.”
– “Great to see you again.”
– Not: “You look great” (the patient might not feel great!)
• Introduce
– “Let’s go around the room so everyone knows who is who. My name is [x], and my role is
[y].
• Duration
– “We have about 30 minutes to talk today as a group. I would be happy to spend more time
with you afterward if needed.”
• Explanation
– “The purpose of this meeting is to talk about [z].”
• Thank You
– “Thank you all for taking the time to meet today.”

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Agenda Setting
Step What you say
Ask about your patient’s
main concerns for the visit
“What are the important questions you wanted answered today?”
“Is there anything you wanted to ask your physicians about?”
“Do you have anything to put on our agenda?”
“Anything else?” (often the most important issue is not first)
Explain your agenda “There are two things I wanted to make sure we talked about…”
Propose an agenda that
combines the patient’s and
your concerns
“How about if we talk about your question first, then cover my two things?”
or
“Given these things, what is most important for you to cover?”
Be prepared to negotiate.
“Ok, I understand that the most important issue for you today is ___.”
“I hear that you have a number of questions. Could we prioritize them so that we cover
the most important ones if we don’t have time to get through all of them?”
Ask for feedback “Do you feel like we’ve covered the agenda? How did we do?”
Fortin AH, Dwamena FC, Frankel RM, Smith RC. Smith’s Patient Centered Interviewing: An Evidence-Based Method 3rd Ed. McGraw-Hill Lange
vitaltalk.org

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Teach-Back
A Priori A Posteriori
• Family has seen a specialist or been
referred from another physician.
• Minimum: Review documentation.
Ideally speak with other physician.
• “To make sure I provide your loved
one with the best care, it helps me
to understand if you can tell me, in
your own words, what Dr. X, the
[specialty] doctor, explained to
you.”
• You are finishing your visit and
want to assess that the
patient/family has increased
understanding of the clinic
situation.
• “We talked about a lot today and
sometimes I can get a little
technical. For my benefit, if you
were to explain the most important
points of today’s visit to your family
not here today, what would you tell
them?”
JBI Database System Rev Implement Rep. 2016 Jan;14(1):210-47

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E.M.P.A.T.H.Y
• Eye contact
• Muscle of facial expression
• Posture
• Affect
• Tone of voice
• Hearing the whole patient
• Your response
Academic Medicine 2014;vol 89 (8): 1108-1112

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Articulating Empathy
Tool Example Notes
Naming (1) “It sounds/looks like you are scared / sad /
frustrated”
Naming the emotion will usually decrease the
intensity of emotion
Understanding (<5) “This helps me understand what you are
thinking”
Use to convey acknowledgement while avoiding
implications that you understand “everything”
Respecting (1-2) “I can see you have really been trying to follow
our instructions”
Give the patient/family credit for what they have
done, praise is a motivator
Supporting (1-2) “I will do my best to make sure you have what
you need”
Commit 100% of what you can commit to without
committing to things beyond your control
Exploring (∞) “Could you say more about what you mean
when you say that…”
Open-beginning statement with a focused end
www.vitaltalk.org/sites/default/files/quick-guides/NURSEforVitaltalkV1.0.pdf

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Naming the Four Basic Human Emotions
Happy
Sad
Scared Angry
J Exp Psychol Gen. 2016 Jun;145(6):708-30

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Identify Commonly Missed Opportunities
• Listen and respond to family members
• Acknowledge and address family emotions
• Explore and focus on patient values and treatment
preferences
• Explain the principle of surrogate decision making to
the family – the goal of surrogate decision making is to
determine what the patient would want if the patient
were able to participate.
Chest. 2008 Oct; 134(4): 835–843

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Three-step Approach to Patient- and Family-
Centered Decision Making
Assess prognosis
and certainty of
prognosis
Assess family
preference for
role in decision-
making
Adapt
communication
strategy based
in patient and
family factors
and reassess
regularly
SharedDecisionMaking
Parentalism
“Doctor Decides”
“Do you want a
recommendation?”
Autonomy
“Family Decides”
“Do you want
some time to talk
with your family
about this?
Chest. 2008 Oct; 134(4): 835–843

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Post-Meeting Reflection
• What worked well?
• What could have been better?
• What changes to the plan of care need to be taken
care of?
• What are the next steps?

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TRAUMATIC BRAIN INJURY
AS A LATE SIGN OF FRAILTY AND DECLINE

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Traumatic brain injury as a late sign of frailty or decline
• Falls are the leading cause of traumatic brain injury for older adults
(51%)
• ≥ 65 years old
– Traumatic brain injury is responsible for > 80,000 emergency
department visits each year
• 75% result in hospitalization
• > 60% are falls from a standing height or lower
• > 50% of deaths from falls are due to TBI
• ≥ 75 years old
– Highest rates of traumatic brain injury-related hospitalization and
death.
– Three-fold increase in the last 30 years.
“These are guaranteed: You’re born. You have a fall and/or a blockage. You die.”
J Am Geriatr Soc. 2006 Oct; 54(10): 1590–1595.
CMAJ. 2013 Nov 19; 185(17): E803–E810.

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Causes of fall
Accident, environmental hazard, fall from bed
Gait disturbance, balance disorders or
weakness, pain related to arthritis
Vertigo
Medications or alcohol
Acute illness
Confusion and cognitive impairment
Postural hypotension
Visual disorder
Central nervous system disorder, syncope,
drop attacks, epilepsy
Fall(s) from standing or lower height
Traumatic brain injury
Fracture
Are then causes of traumatic brain injury
www.aafp.org/afp/2000/0401/p2159.html#afp20000401p2159-t1
Rubenstein LZ. Falls. In: Yoshikawa TT, Cobbs EL, Brummel-Smith K, eds. Ambulatory geriatric care. St. Louis: Mosby, 1993: 296–304.
Missed this…
…and this…
…just to treat
this!

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Fall risk factors in the elderly
Repetitive falling is the greatest predictor of falling again.
www.aafp.org/afp/2000/0401/p2159.html#afp20000401p2159-t1
Am Fam Physician 1997;56:1815–22,1823
Trauma and Acute Care 2017; 2(2:38);1-5

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Outcome of elderly traumatic brain injury with severe head
injury (GCS 3–8 on admission)
Study Year
Period of data
collection
Age, y Patients, n Mortality, %
Good outcome
at 6 months*, %
Kilaru et al. [48] 1996 1990–1995 65+ 40 68 7.5
Hukkloven et al.
[49]
2003 1991–1995 65+ 101 72 15
Ushewokunze et
al. [30]
2004 1990–2000 70+ 71 80 1
Gan et al. [19] 2004 1999–2001 64+ 36 72.2 16.7
Patel et al. [8••] 2010 1996–2004 65+ 669 80.7
65–70 137 71.5
70–75 147 74.8
75–80 160 85
80+ 225 87
Bouras et al.
[16]
2007 1998–2005 65–74 48 79.2
75+ 67 92.5
* Glasgow Outcome Score 4–5
Curr Transl Geriatr Exp Gerontol Rep. 2012; 1(3): 171–178

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TRAUMATIC BRAIN INJURY
AS AN ACUTELY TERMINAL ILLNESS

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Everyone Needs To Know How To Provide Comfort Care
Palliative Care
• Palliative Care is an approach that
improves the quality of life of
patients and their families facing
the problem associated with life-
threatening illness, through the
prevention and relief of suffering by
means of early identification and
impeccable assessment and
treatment of pain and other
problems, physical, psychosocial
and spiritual.
Comfort Care
• Comfort Care is an essential part
of medical care at the end of life.
It is care that helps or soothes a
person who is dying. The goal is
to prevent or relieve suffering as
much as possible while respecting
the dying person’s wishes.
www.who.int/cancer/palliative/definition/en/
www.nia.nih.gov/health/publication/end-life-helping-comfort-and-care/providing-comfort-end-life

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National Cancer Institute: Last Days of Life (PDQ®)
• “Many patients fear uncontrolled pain during the final hours of
life, while others (including family members and some health
care professionals) express concern that opioid use may hasten
death. Experience suggests that most patients can obtain pain
relief during the final hours of life and that very high doses of
opioids are rarely indicated. Several studies refute the fear of
hastened death associated with opioid use. In several surveys of
high-dose opioid use in hospice and palliative care settings, no
relationship between opioid dose and survival was found.”
• The goal is to provide symptom management, specifically of
pain and dyspnea, not to cause death.
www.cancer.gov/cancertopics/pdq/supportivecare/lasthours/healthprofessional/page2

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Comfort-Based Respiratory Care
• Evidenced-based protocol for terminal ventilator
wean and cessation of high-level oxygen support
(high flow oxygen such as Optiflow and non-
invasive positive pressure ventilation such as CPAP,
and BiPAP) for adult patients pursuing comfort-only
care.

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Assessments
Respiratory Distress Observation Scale (RDOS)
Variable 0 pts 1 pt 2 pt
HR < 90 90-109 > 109
RR < 19 19-30 > 30
Restlessness: non-
purposeful movements
None Occasional,
slight
Frequent
Accessory muscle use: rise
in clavicle during inspiration
None Slight Pronounced
Paradoxical breathing None Present
Grunting at end-expiration:
guttural sound
None Present
Nasal flaring: involuntary
movement of nares
None Present
Look of fear None Eyes wide open, facial
muscles tense, brow
furrowed, mouth open
Reaction Level Scale (RLS 85)
Reaction Level
Alert, with no delay in response (responds without stimulus) 1
Drowsy or confused, but responds to light stimulation 2
Very drowsy or confused, but responds to strong stimulation 3
Unconscious; localizes (moves a hand towards) a painful stimulus but does not
ward it off
4
Unconscious; makes withdrawing movements from a painful stimulus 5
Unconscious; stereotypic flexion movements following painful stimuli 6
Unconscious; stereotypic extension movements following painful stimuli 7
Unconscious; no response to painful stimuli 8
Journal of Palliative Medicine. 2010; 13(3): 285-290 Acta Neurochir (Wien). 1988;91 (1-2):12-20.

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Comfort-Based Respiratory Support Wean Protocol
Preparation
Premedication
RLS 85 < 6 Suction secretionsSymptom Management Yes No
Discontinue respiratory
support
RDOS > 2
Yes
Wean respiratory support RDOS > 2 for 15 minutes
No
Respiratory Support
Wean Complete
St. Joseph’s Hospital / Marshfield Clinic Palliative Ventilator Weaning Protocol
Yes
Return to previous
respiratory support
settings
No

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Wean Respiratory Support
Invasive Positive Pressure Ventilation
Change mode to SBT trial
PS = SBT protocol for tube size
PEEP = 8 cm H2O
FiO2 = 0.4 (40%)
BiPAP
EPAP = 5 cm H2O
IPAP = 10 cm H2O
FiO2 = 0.4 (40%)
Campbell ML. American Association of Critical-Care Nurses Webinar.
Caring Practice: Evidenced-Based Terminal Ventilator Withdrawal
CPAP
PAP = 5 cm H2O
FiO2 = 0.4 (40%)
High Flow Oxygen
FiO2 = 0.4 (40%)
Flow = 30 L/min

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Basics: Pain and Dyspnea
• First line for alleviation of pain and dyspnea is
opiates:
– Morphine IV 4-8 mg Q15MIN PRN
– Hydromorphone IV 0.6-1 mg Q15MIN PRN
– Fentanyl IV 50-100 mcg Q10MIN PRN
• Second line for alleviation of anxiety due to total
pain:
– Lorazepam 0.5-2 mg IV Q2H PRN
• Delirium should be managed with haloperidol 0.5
mg IV Q30MIN PRN

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Continuous Opioid Infusions
• If the patient has been receiving opiates calculate
rate based on total dosage in the past 24 hours.
• Titrate a continuous infusion rate every 8 hours by
the dosage of PRN pushes given in the past 8
hours, divided by 8.

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TRAUMATIC BRAIN INJURY
AS “INSTANT DEMENTIA”

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Prognostication
Hypothetical cognitive function recovery paths
Alzheimer's & Dementia. 2014; 10(3 Supplement): S174-S187
Ventilator Support

44. 44
There is a difference between living and being alive
Quantitatively
alive = living
Qualitatively
alive ≠ living

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Window of Opportunity to Allow Death
• The medico‐legal “window of opportunity” for
allowing the patient to die structures family
experience and fails to deliver optimal outcomes
for patients.
Hypothesis
Sociology of Health & Illness. 2013; 35(7):1095-1112

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Window of Opportunity to Allow Death
• 26 of 34 interviewees (14 of 21 families) believe
that their relative would rather be dead than
maintained in their current situation.
Results
Sociology of Health & Illness. 2013; 35(7):1095-1112

47. 47
Patient Details
Family Patient’s age at injury
Length of time since
injury
Diagnosis
F1 30s 6yrs+ Permanent Vegetative State [PVS]
F2 30s 4yrs+ PVS
F3 70s 9yrs+ PVS
F4 Teens 9yrs+ PVS
F5 50s <1yr PVS
F6 40s 3yrs+ PVS/MCS
F7 20s 3yrs+ PVS/MCS
F8 60s 4yrs+ PVS/MCS
F9 Teens 6yrs+ PVS/MCS
F10 20s 4yrs+ Minimally Conscious State [MCS]
F11 40s 2yrs+ Profound Neurological Deficit
F12 40s 4yrs+ Profound Neurological Deficit
F13 70s 1yr+ Profound Neurological Deficit
F14 50s 15yrs+ Profound Neurological Deficit

48. 48
Window of Opportunity to Allow Death
“Tania: … we came back the next day I suppose expecting
to be asked about having the life machine turned off. But
we weren’t. It was this other man wasn’t it, and he uhm
he …
Ian: … gave us a bit of hope.
Tania: Yeah! And he just said, you know, ‘he’s young’, and
he just had this feeling … And you want everything to be
okay. You want to believe the good things, and we didn’t
want to lose Charles, we were in total shock, so we agreed
to the decision to have the trachy fitted (F4).”
Quote
Sociology of Health & Illness. 2013; 35(7):1095-1112

49. 49
Window of Opportunity to Allow Death
“When she had the pneumonia she was clearly in
great distress and should have been allowed to die.
And instead they pumped her full of antibiotics … She
should not have been given those antibiotics. I know
she may have survived and everything, but I spent so
much time with her, I don’t think she would have. She
really was near death then (F11).”
Quote
Sociology of Health & Illness. 2013; 35(7):1095-1112

50. 50
Window of Opportunity to Allow Death
“When he’s asleep he looks peaceful. And as he
wakes up he grimaces and roars and is so miserable –
of course, because you’re waking up into a nightmare.
And it’s always awful watching him wake up … He is
very aware of his situation, and his situation isn’t one
you’d want to be aware of (F10).”
Quote
Sociology of Health & Illness. 2013; 35(7):1095-1112

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Window of Opportunity to Allow Death
“She’s had a lung collapsed, she’s had C Diff
[clostridium difficile] five times … She’s had
pneumonia. She had to have a defib [defibrillator]
fitted. She had a NG [nasal gastric] tube pushed down
her nose for five months which kept coming out. And
that’s traumatic in itself. Having that pushed down all
the time you know … Amy feels pain (F2).”
Quote
Sociology of Health & Illness. 2013; 35(7):1095-1112

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SUMMARY

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Palliative Care in TBI
• Traumatic brain injury as a late sign of frailty or decline
– In the elderly, optimization of management of factors associated
with falls would decrease TBI.
– Goals-of-care established before life altering events are critical in
the elderly.
• Traumatic brain injury as an acutely terminal illness
– Delivering high-quality comfort-only care is something all providers
should be able to do for patients with fatal traumatic brain injury.
• Traumatic brain injury as “instant dementia”
– Goals-of-care conversations early and often are critical for
determining appropriate plan of care for patients with expected
severe neurological impairment following TBI.
Summary

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THANK YOU
QUESTIONS OR COMMENTS