Palliative Care Boot Camp

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Palliative Care Boot Camp
Michael Aref, MD, PhD, FACP, FHM
Assistant Medical Director of Palliative Medicine

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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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Definitions
• 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.
• Palliative care, and the medical sub-specialty of palliative medicine, is
specialized medical care for people living with serious illness. It focuses on
providing relief from the symptoms and stress of a serious. Illness whatever
the diagnosis. The goal is to improve quality of life for both the patient and
the family.
• Palliative care is the relieving or soothing of symptoms of a disease or
disorder while maintaining the highest possible quality of life for patients.
WHO • CAPC • AAHPM
www.who.int/cancer/palliative/denition/en/
www.capc.org/about/palliative-care/
palliativedoctors.org/palliative/care

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Type Goal Investigations Treatments Setting
Active To improve quality of life with possible prolongation of life
by modification of underlying disease(s). Ex: Pt. who has
potentially resectable pancreatic carcinoma. May require
immediate symptom control or need guidance in setting
future goals.
Active (eg, biopsy, invasive
imaging, screenings)
Surgery, chemotherapy, radiation therapy,
aggressive antibiotic use,
Active treatment of complications
(intubation, surgery)
In-patient facilities,
including critical care units;
Active office follow-up
Comfort Symptom relief without modification of disease, usually
indicated in terminally ill patients. Ex. Pt. who has
unresectable pancreatic carcinoma, no longer a candidate
for or no longer desires chemo or radiation therapy.
Minimal (eg, chest radiograph
to rule out symptomatic
effusion, serum calcium level
to determine response to
bisphosphonate therapy)
Opioids, major tranquilizers, anxiolytics,
steroids, short- term cognitive and
behavioral therapies, spiritual support,
grief counseling, noninvasive treatment
for complications
Home or homelike
environment
Brief in-patient or respite
care admissions for
symptom relief and respite
for family
Urgent Rapid relief of overwhelming symptoms, mandatory if death
is imminent. Shortened life may occur, but is not the
intention of treatment (this must be clearly understood by
patient or proxy). Ex. Patient who has advanced pancreatic
carcinoma reporting uncontrolled pain (8 on a scale of 10),
despite opioid therapy.
Only if absolutely necessary
to guide immediate symptom
control
Pharmacotherapy for pain, delirium,
anxiety. Usually given intravenously or
subcutaneously and in doses much higher
than most physicians are accustomed to
using.
Deliberate sedation may need to be used
and may need to be continued until time
of death.
In-patient or home with
continuous professional
support and supervision
Victoria Classification of Palliative Care
J Palliat Care. 1993 Winter;9(4):26-32.

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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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DIAGNOSIS $35
With 1 Hospitalization $175.
With 2 Hospitalizations 500.
With Hospice $1500.
Mortality Value $175
Hospitalizations cost $200K. each
Hospice, $0. plus (or minus) 4
hospitalizations.
If a patient owns ALL the Symptoms of any Color
Group, the opiates are Doubled on Uncontrolled
Symptoms in that group.
Mortalopoly and Morbidopoly
• Palliative care is a
philosophy of care for
seriously ill patients, it is
– NOT a place
– NOT a status
– NOT limited by curative
intent

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With, For, and To
Never say nothing
• Even when we cannot cure their
illness or prevent their death, we
can always do something:
provide the best care possible.
#with4not2
• Do as little to the patient as
possible.
• Do for the patient what they
cannot do themselves.
• Do as much with the patient as
you are able.

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Scripting
• “Palliative care works with me, your cardiologist, to better
manage your [pain, shortness of breath or other symptom
(anxiety, fatigue, nausea)]. They are experts in looking at this
holistically and make a comprehensive plan for how best to
relieve your [symptom].
• They can answer some of the questions you may have about what
to expect in future as your [disease] worsens.
• They help me formulate a treatment plan that is based on what is
important to you and what is going on with your family.
• There is support staff at the clinic who works with the palliative
care providers to help you and your family cope with these
changes and plan for the future”
How to help other providers refer to palliative care

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Palliative Care and Geriatrics
Geriatrics
• Age > 65
• Foster
independence/
control over life
• Collaborative
Care Model
Palliative Care
• Any Age
• Maximize well-
being/reduce
suffering
• Interdisciplinary
Team Model
Improving
quality of
life
Nursing Facility HospitalClinic
www.dartmouth-hitchcock.org/dhmc-internet-upload/file_collection/SharedConcepts.pdf

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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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Quality and Quantity
 Of the 151 patients who underwent
randomization, 27 died by 12 weeks and 107
(86% of the remaining patients) completed
assessments. Patients assigned to early
palliative care had a better quality of life than
did patients assigned to standard care (mean
score on the FACT-L scale [in which scores range
from 0 to 136, with higher scores indicating
better quality of life], 98.0 vs. 91.5; P=0.03). In
addition, fewer patients in the palliative care
group than in the standard care group had
depressive symptoms (16% vs. 38%, P=0.01).
Despite the fact that fewer patients in the
early palliative care group than in the standard
care group received aggressive end-of-life care
(33% vs. 54%, P=0.05), median survival was
longer among patients receiving early
palliative care (11.6 months vs. 8.9 months,
P=0.02).

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Carle Palliative Medicine Criteria
General Referral Criteria1
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
Cancer2
• Stage IV disease
• Stage III lung or pancreatic cancer
• Stage II non-small cell lung cancer3
• Prior hospitalization within 30-days, excluding routine chemotherapy
• Hospitalization lasting longer than 7 days.
• Uncontrolled symptoms including pain, nausea/vomiting, dyspnea,
delirium, and psychological distress.
1 www.capc.org
2 www.oncologypractice.com/single-view/five-criteria-doubled-
palliative-care-cut-hospital-
readmissions/f37951d2a4828930104a3fa9b91eb013.html
3 N Engl J Med 2010; 363:733-742

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Heart Failure1
• Symptoms
• NYHA class III/IV symptoms
• Frequent heart failure readmissions
• Recurrent ICD shocks
• Refractory angina
• Anxiety or depression adversely affecting patient's
quality of life or ability to best manage illness
• Milestones
• Referral
• VAD
• Transplant
• TAVR
• Home inotropic therapy
• Caregiver distress
Kidney Disease2
• CKD Stage IIIb, IV, or V with fatigue, muscle cramps, anorexia,
nausea, insomnia, neuropathy, gout, itch, headache, or cognitive
impairment
• ESRD on dialysis with any stage V symptom as well as abdominal
pain from peritoneal dialysis or fistula problems from
hemodialysis
• Calciphylaxis
• Symptoms due to comorbid diabetes, cardiovascular disease, or
cancer
Liver Disease3
• Ascites despite maximum diuretics
• Spontaneous peritonitis
• Hepatorenal syndrome
• INR > 1.2 without anticoagulation
• Encephalopathy
• Recurrent variceal bleeding if further intervention inappropriate
1 www.acc.org/latest-in-cardiology/articles/2016/02/11/08/02/palliative-care-for-patients-with-heart-failure#sthash.ddHLsX9W.dpuf
2 Adapted from: www.nhslanarkshire.org.uk/Services/PalliativeCare/Documents/NHS%20Lanarkshire%20Palliative%20Care%20Guidelines.pdf
3 www.palliativedrugs.com/download/SpecialistPalliativeCareReferralforPatients.pdf

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Lung Disease
Chronic Obstructive Pulmonary Disease1
• Age ≥ 75
• Diabetes, cardiovascular disease, or end-stage renal
disease
• Change in 6 minute walk by 50 m
• Functional dependence and patient reported
minimal physical activity
• Poor healthcare quality-of-life
• FEV1 < 30%
• BMI < 20%
• ≥ 1 hospitalization within last year
Restrictive Lung Disease2
• TLC or FVC < 50%
Neurological Disease3
Presence of any of the General Referral Criteria
above, and/or:
• Folstein Mini Mental score < 20
• Feeding tube is being considered for any
neurological condition
• Status Epilepticus > 24 hrs
• ALS or other neuromuscular disease considering
invasive or non-invasive mechanical ventilation
• Any recurrent brain neoplasm
• Parkinson’s disease with poor functional status
or dementia
• Advanced dementia with dependence in all
activities of daily living
1 Int J Chron Obstruc Pulmon Dis. 2015; 10:1543-51
2 Based on severity obtained from review of courses.washington.edu/med610/pft/pft_primer.html#algor
3 www.capc.org

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• 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, and neurological degenerative
diseases (ALS) are neurological failure.
General Referral Criteria

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In-Patient Palliative Care
• Since January 2017, the in-patient service has been 7 days a week, 365 days a year during
regular business hours.
• Minimum staffing for the service is three (3) providers, one of whom is a physician,
except on weekends and holidays.
• Follow-Up Orders
– on patients we already see
– on patients that receive other care here at the main campus who would benefit from
ambulatory palliative care follow-up
If they are sick enough to be
in the hospital and need a
palliative care consult, they
need that consult in-patient.

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Ambulatory Palliative Care
• Clinic staffed Monday – Friday during regular business hours.
• To refer place order in EPIC
– Type “amb pal”
– Clinical coordinator or RN will call patient to set-up appointment
• Embed Clinics:
– Oncology (1 day/week)
– Advanced Heart Failure (2 half-
days/week)

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Central Neuropathic
• Non-dermatomal
• Direct central nervous injury
• Radiating or specific
• Burning, prickling, tingling,
electric, shock-like or lancinating
Peripheral Neuropathic
• Dermatomal
• Direct peripheral nervous injury
• Radiating or specific
• Burning, prickling, tingling,
electric, shock-like or lancinating
Visceral (,)
• C fiber activity
• Distension, ischemia and
inflammation of organs
• Diffuse, deep ache,
pressure, sickening,
squeeze, dull or sharp
Types of Pain
Psychogenic
• Pain that is caused, increased, or prolonged
by mental, emotional, or behavioral factors.
Acute < 3 months
Chronic > 3 months
Malignant pain is due
to a progressive disease
that will lead to death.

Non-malignant pain is due to a
non-threatening cause that may
persist until, but is not the cause of,
death.

1st
2nd
tramadol
oxycodone
methadone
3rd
Never
Opioid?
2nd – 3rd
Somatic (,)
•  fiber activity
• Skin and deep tissue
damage
• Pinprick, stabbing or
sharp
Goldstein and Morrison, Evidenced-Based Practice of Palliative Care: Expert Consult, Ch 1, 2
Mann and Carr, Pain: Creative Approaches to Effective Management

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4-Step Model of Pain
Transduction Transmission Perception Modulation
Acute stimulation in the
form of noxious
thermal, mechanical, or
chemical stimuli is
detected by nociceptive
neurons.
Nerve impulses
transferred via axons of
afferent neurons from
the periphery to the
spinal cord, to the
medial and ventrobasal
thalamus, to the
cerebral cortex.
Cortical and limbic
structures in the brain
are involved in the
awareness and
interpretation of pain.
Pain can be inhibited or
facilitated by
mechanisms affecting
ascending as well as
descending pathways.
Wyatt SA, Adjunct Approaches to Chronic Pain Management for Individuals with Substance Abuse Disorder, July 21, 2016

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Total Pain
Social
Psychological
Physical
•Role
•Relationships
•Occupation
•Financial cost
•Emotional response
•Comorbid mood disorder  anxiety
•Adjustment to new baseline
•Cause?
•Associated symptoms
•Debility and fatigue
Superimposed on Maslow’s Hierarchy of Needs
Spiritual
•Existential coping
•Religious beliefs
•Meaning of life/illness
•Personal value
Interventional Pain Service
Other Specialties
Pharmacy
Physical Therapy
Social Work
Financial Navigator
Occupational Therapy
Chaplaincy
Art & Music Therapy
Social Work
Psychology
Psychiatry
Curr Opin Support Palliat Care. 2008; 2(2):110-3
Maslow AH, A Theory of Human Motivation, 1943

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Nocioceptive Nerve Conduction Pathways
J Pain. 2010 Aug;11(8):701-9
nobaproject.com/modules/touch-and-pain

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Peripheral Nerve and Spinal Neurotransmitters of Pain
Int Clin Psychopharmacol. 1995 Jan;9 Suppl 4:41-5
Neuron. 2012; 76(1): 175-191
Nat Rev Drug Discov. 2014 Jul;13(7):533-48
www.rnceus.com

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Start Smart
• What type of pain are we managing?
• Stress functional improvement and pain
management rather than “pain free”.
• Opiates are neuro-hormonal-psychiatric
scaffolding they are not cure for pain
nor the cornerstone of good pain
management.
• Opiate dichotomy: Judged due to social
stigma, shocked by abuse, but desire to
provide pain relief.
• What is your patient’s goal?
• What is the plan and is everyone in
agreement?
Proc (Bayl Univ Med Cent). 2000 Jul; 13(3): 236–239.

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Procedural Interventions
• Patient controlled analgesia pump
• Neurolysis
• Spinal stimulator
• Intrathecal pump
• Neurosurgery
Methadone PO
Fentanyl IV (0.05 mg = 50 mcg)
Hydromorphone IV (0.8 mg)
Hydromorphone PO (4 mg)
Oxycodone PO (10 mg)
Morphine PO (15 mg) Morphine IV (5 mg)
Hydrocodone PO (15 mg)
Tramadol PO (100 mg)
Codeine PO (100 mg)
Ibuprofen PO (1100 mg)
Acetaminophen PO (3610 mg)
Salicylate (choline magnesium
trisalicylate)
Ascending WHO Analgesic Ladder
Adjuncts
• Anticonvulsants
• Neuropathic pain + muscle spasm = gabapentin
• Neuropathic pain + anxiety - depression = pregabalin
• Post-operative pain + anxiety - depression = pregabalin
• Antidepressants (SNRI, TCA)
• Muscle spasm + anxiety = diazepam
• Depression  anxiety + neuropathic pain = duloxetine
• Baclofen
• Cyclobenzaprine (muscle relaxant, fibromyalgia)
• Corticosteroids
• Ketamine
Interventions
• Transcutaneous electrical nerve stimulation
• Acupuncture
• Art / Music Therapy
• Massage
• Physical Therapy
• Psychological Treatment
Procedures
• Nerve blocks
Canadian Family Physician 2010; 56(6):514-517
Opioid tablet images WebMD
Chronic pain
Non-malignant pain
Malignant pain
Morphine IV comes in 4 and 6 mg
Actually 120 mg of codeine
Sedation
36-72 hours
Nausea / Vomiting
Pruritus
7-10 days
Constipation
Flushing / Sweating
Never

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Dose adjustment due to end-organ dysfunction
Renal dosing of opiates
CrCl(mL/min)
hydromorphone
fentanyl
dosinginterval
> 30 50% 75% 2
< 30 25% 50% 2
Hepatic dosing of opiates
Hepatic
impairment
hydromorphone
fentanyl
dosinginterval
Mild-to-
moderate
50% 100% 2
Moderate
-to-severe
25% 75% 2

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Acute Pain Management
Opiate Naive
• IV Loading Dose
– morphine 4-8 mg
– hydromorphone 0.6-1.2 mg
– fentanyl 50-100 mcg
• Q10MIN PRN =
PSSF  loading dose
– Mild, PSSF = 1
– Moderate, PSSF = 1.25
– Severe, PSSF = 1.5
Opiate Tolerant
• Calculate total 24 hour morphine
equivalent dose (MED)
• Loading dose =
MED  IV opiate equivalent factor 
PSSF / 180
• Q10MIN PRN = 50-100% of
loading dose
Goldstein NE and Morrison RS, Evidence-Based Practice of Palliative Medicine

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Acute Pain Management for Opiate Naïve and Low
Opioid Tolerant Patients
Dose Moderate Pain Severe Pain
morphine(mg)
hydromorphone
(mg)
fentanyl(mcg)
morphine(mg)
hydromorphone
(mg)
fentanyl(mcg)
First 4 0.5 50 4 0.5 50
Second 4 0.5 50 8 1 100
Third 8 1 100 12 1.5 150
< 50 mg oral morphine equivalents at baseline

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Acute Pain Management for Moderately Opioid
Tolerant Patients
morphine(mg)
hydromorphone
(mg)
fentanyl(mcg)
morphine(mg)
hydromorphone
(mg)
fentanyl(mcg)
First 8 1 100 8 1 100
Second 8 1 100 12 1.5 150
Third 12 1.5 150 16 2 200
50-100 mg oral morphine equivalents at baseline

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Acute Pain Management for Highly Opioid Tolerant
Patients
morphine(mg)
hydromorphone
(mg)
fentanyl(mcg)
morphine(mg)
hydromorphone
(mg)
fentanyl(mcg)
First 12 1.5 150 12 1.5 150
Second 12 1.5 150 16 2 200
Third 16 2 200 20 2.5 250
> 100 mg oral morphine equivalents at baseline

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Scheduled or as needed for pain every 4 hours (Q4H) with as needed for
breakthrough pain every 1 hour (Q1H)
IV PO
morphine(mg)
hydromorphone
(mg)
fentanyl(mcg)
morphine(mg)
hydromorphone
(mg)
oxycodone(mg)
Q4H Q1H Q4H Q1H Q4H Q1H Q4H Q1H Q4H Q1H Q4H Q1H
4 2 0.5 0.3 50 25 15 7.5 2 1 10 5
8 4 1 0.6 100 50 30 15 4 2 20 10
12 6 1.5 1 150 75 45 22.5 6 3 30 15
16 8 2 1 200 100 60 30 8 4 40 20
20 12 2.5 1.5 250 150 75 37.5 10 5 50 25

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Scheduled Dosing
• Calculate opiate dosage used in the past 24 hours
and set scheduled dose to be 75-100% this total.
• PRN dosing is 10% every hour to three hours as
needed.
Theory

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Scheduled Dosing
Fentanyl Patch
(mcg/hr)
OME per Day (mg) Q4H scheduled short
acting
Long acting scheduled Q3H PRN dosing
15
½ hydrocodone-APAP 5-
325 mg
325 mg
30
hydrocodone-APAP 5-
325 mg
MSSR 15 mg Q12H
325 mg
12.5 30-59 MSIR 7.5 mg MSSR 15 mg Q8H
hydrocodone-APAP 5-
325 mg
60 MSSR 30 mg Q12H
hydrocodone-APAP 5-
325 mg
25 60-134 MSIR 15 mg MSSR 30 mg Q8H
hydrocodone-APAP 10-
325 mg
140 MSSR 60 mg Q12H
MSIR 15 mg
50 135-224 MSIR 30 mg MSSR 100 mg Q12H
MSIR 15 mg
75 225-314 MSIR 45 mg MSSR 90 mg Q8H
MSIR 30 mg
100 315-404 MSIR 60 mg MSSR 200 mg Q12H
MSIR 45 mg
 2/3  oxycodone PO
 1/4  hydromorphone PO

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Scheduled or as needed for pain every 4 hours (Q4H) with as needed for
breakthrough pain every 1 hour (Q1H)
IV PCAmorphine(mg)
hydromorphone
(mg)
fentanyl(mcg)
morphine(mg)
hydromorphone
(mg)
fentanyl(mcg)
Q4H Q4H Q4H Q10MIN 4-hour LO Q10MIN 4-hour LO Q10MIN 4-hour LO
4 0.5 50 0.5 12 0.1 1.7 6.25 150
8 1 100 1 24 0.2 3.4 12.5 300
12 1.5 150 1.5 36 0.2 5.1 20 450
16 2 200 2 48 0.3 6.2 25 600
20 2.5 250 3 68 0.4 8.5 35 850

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Descending WHO Analgesic Ladder
0
100
200
300
400
500
0 2 4 6 8 10 12 14 16 18 20 22 24 26
OralMorphineEquivalents
Days
10% wean everyday
20% wean everyday
50% wean everyday
Acute Pain
Acute pain
Chronic pain without control
Acute crises of chronic pain
paincommunity.org/blog/wp-content/uploads/Safely_Tapering_Opioids.pdf
AAPM 2005
USVA 2003
Hydromorphone 1 mg IV every hour
Oxycodone-APAP 10-325 mg PO every 2 hours
Hydrocodone-APAP 10-300 mg PO every 2 hours
Morphine 30 mg PO every 3 hours
Slow wean, if:
• Tachycardia
• Diaphoresis, lacrimation, salivation
• Diarrhea

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Narcotic Bowel Syndrome
• The pain worsens or incompletely resolves with continued or escalating dosages
of narcotics.
• There is marked worsening of pain when the narcotic dose wanes and
improvement when narcotics are reinstituted (“Soar and Crash”).
• There is a progression of the frequency, duration and intensity of pain episodes.
• The nature and intensity of the pain is not explained by a current or previous
gastrointestinal diagnosis:
– A patient may have a structural diagnosis (e.g., inflammatory bowel disease,
chronic pancreatitis) but the character or activity of the disease process is
not sufficient to explain the pain.
Chronic or frequently recurring abdominal pain that is treated with acute high dose or chronic
narcotics and all of the following:
Clin Gastroenterol Hepatol. Oct 2007; 5(10): 1126–1122.

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Opiate-Induced Hyperalgesia
• Increasing sensitivity to pain stimuli (hyperalgesia). Pain
elicited from ordinarily non-painful stimuli, such as stroking
skin with cotton (allodynia).
• Worsening pain despite increasing doses of opioids.
• Pain that becomes more diffuse, extending beyond the
distribution of pre-existing pain.
• Presence of other opioid hyperexcitability effects: myoclonus,
delirium or seizures.
• Can occur at any dose of opioid, but more commonly with
high parenteral doses of morphine or hydromorphone and/or
in the setting of renal failure.
www.mypcnow.org/blank-h5muh

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Dyspnea and Hypoxia
Dyspnea
• Subjective feeling of difficulty or
distress in breathing.
• Patients who feel dyspnea may
not appear dyspneic.
Hypoxia
• Objective finding of lower-than-
normal concentration of oxygen
in arterial blood. Occurs with any
interruption of normal
respiration.
• Hypoxia and dyspnea are
independent of one another.
If a patient’s breathing pattern is noticeable as you approach them it is abnormal.

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Dyspnea and Anxiety
AnxietyDyspnea
The most negative of positive feedback loops

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Total Dyspnea
•Role
•Relationship
•Occupation
•Financial Cost
•Existential coping
•Religious beliefs
•Meaning of life/illness
•Personal value
•Emotional Response
•Anxiety
•Exacerbation of
comorbid mood disorder
•Adjustment to new
baseline
•Cause?
•At rest or with exertion?
•Assoc. Sx?
•Drowsiness or Fatigue?
Physical Psychological
SocialSpiritual
Physical • Psychological • Social • Spiritual
Dyspnea
Curr Opin Support Palliat Care. 2008; 2(2):110-3

49
Management of Physical Symptoms of Dyspnea
Non-Pharmacological
• Education in purse-lipped breathing.
• Referral to pulmonary rehabilitation in
COPD and some other pulmonary
diseases.
• Obtaining a fan at bedside (these must
be purchased by the patient or family
and are not provided).
• Use of supplemental oxygen 2-6 L/min.
• In some cases NIPPV improves dyspnea
Pharmacological
• Opiates
• Benzodiazepines if comorbid
anxiety is worsening dyspnea
Carle Palliative Medicine, Palliative Care: Guide to Symptom Management

51
Constipation Prevention and Management Options
Non-pharmacological ways to prevent and treat
constipation
1. Optimize oral hydration
2. Physical activity
3. Scheduled visits to the
commode
4. Privacy when using the
commode
Yakima Valley Anti-Constipation Fruit Paste
1 lb pitted prunes
4 oz senna tea leaves (at health foods store)
1 lb raisins
1 lb figs
1 cup lemon juice
1. Prepare tea; use about 2 1/2 cups boiled water, add to tea leaves
and steep for 5 minutes.
2. Strain tea and remove tea leaves.
3. Place 2 cups of tea, or amount left, in large pot.
4. Add all of the fruit to the tea.
5. Boil fruit and tea for 15 - 20 minutes, until soft.
6. Remove from heat and add lemon juice. Allow to cool.
7. Use hand mixer/blender or food processor to turn fruit and tea
mix into a paste.
8. Place in glass jars or Tupperware and place in freezer (paste will
not freeze but will keep forever in freezer also very long in
fridge).
DOSAGE: 1 - 2 Tablespoons per day

52
Bowel movement frequency
normal for you without needing
other as needed medications
other medications
normal for you without other
medications
other medications
All opiates cause constipation and
unlike other side effects this does
not improve with time!
Start senna 1 tablet
twice daily plus as
needed adjunct*
Increase senna to 2
tablets twice daily plus
as needed adjunct*
Increase senna to 4
tablets twice daily plus
as needed adjunct*
Continue senna 4
tablets twice daily and
add MiraLax daily plus
as needed adjunct*
Contact your provider
for other
pharmacological
options for managing
your constipation
No changes
No changes
No changes
No changes
Yes
Yes
Yes
Yes
No
No
No
No
*Adjunct medications should be
used if there is no bowel
movement in the last 48 hours,
firstly:
• MiraLax 17g 1-2 times daily
If no relief or unable to tolerate
MiraLax consider:
• Bisacodyl suppository 10 mg
daily
• Glycerin suppository daily
• Soaps suds or tap water
enema daily

53
Advanced Constipation Prevention and
Management Options
• Lubiprostone (Amitiza)
– Acts on gut chloride channels (CIC-2) increasing intestinal secretions and causes accelerated
intestinal transit.
– Indications: Chronic idiopathic and opiate-induced constipation.
– 24 mcg PO BID
• Naloxegol (Movantik)
– Peripheral acting µ-opioid receptor antagonist (PAMORAs) that do not cross the blood-brain
barrier which prevents effects of constipation but does not significantly impair analgesia.
– Indications: Opiate-induced constipation.
– 25 mg PO QAM
• Methylnaltrexone (Relistor)
– Another PAMORA that is given subcutaneously and has a shorter time of onset and is slightly
more effective than naloxegol.
– Indications: Opiate-induced constipation.
– Dosing is weight based and it is given every other day
Typically need to have failed 4 other laxatives for insurance to cover.

55
Nausea
Cause Receptors Drug Classes Examples
Vestibular Cholinergic, Histaminic
Anticholinergic,
Antihistaminic
Scopolamine patch,
Promethazine
Obstipation
Cholinergic, Histaminic,
likely 5HT3
Stimulate myenteric plexus Senna products
Motility
Cholinergic, Histaminic,
5HT3, 5HT4
Prokinetics which
stimulate 5HT4 receptors
Metoclopromide
Infection/Inflammation
Cholinergic,
Histaminic, 5HT3,
Neurokinin 1
Anticholinergic,
Antihistaminic, 5HT3
antagonists, Neurokinin 1
antagonists
Promethazine (e.g. for
labyrinthitis),
Prochlorperazine
Toxins Dopamine 2, 5HT3
Antidopaminergic, 5HT3
Antagonists
Prochlorperazine,
Haloperidol, Olanzapine,
Ondansetron
Fast Facts www.mypcnow.org/blank-ggr79

56
MALIGNANT BOWEL DYSFUNCTION & OBSTRUCTION

57
Malignant Bowel Obstruction
• Prevalence 5-25% in ovarian carcinoma or
colorectal cancer, in advanced ovarian cancer
frequency up to 42%.
• Imaging of choice: CT abdomen and pelvis with
contrast (ACR Appropriateness Criteria Rating 9)
followed by without contrast (ACR 7). X-ray
abdomen and pelvis is ACR 5.
Partial or Complete
www.cancer.gov/resources-for/hp/education/epeco/self-study/module-3/module-3e.pdf
acsearch.acr.org/docs/69476/Narrative/

58
Management
• Venting gastrostomy is definitive management.
• Dexamethasone 6-16 mg IV may bring about resolution
of bowel obstruction.
• Dexamethasone + ranitidine = octreotide
• Dexamethasone + octreotide + metoclopramide
– Malignant Bowel Obstruction (MBO): Pain and nausea
improved within 24 hours, PO intake within 48 hours
– Malignant Bowel Dysfunction (MBD): 84% of patients had
improved pain and nausea within 24 hours, PO intake within
1-4 days
Inoperable
Support Care Cancer. 2009 Dec;17(12):1463-8
Am J Hosp Palliat Care. 2016 May;33(4):407-10
Support Care Cancer. 2009 Dec;17(12):1463-8
Am J Hosp Palliat Care. 2016 May;33(4):407-10

59
SYMPTOM MANAGEMENT
BUY ONE GET ONE FREE

60
Some Considerations
• Opioid-induced nausea = haloperidol PRN (max 2 mg
TID) + olanzapine QHS
• Superficial somatic pain + minimize opioids = lidocaine
topical
• Deep somatic pain = orphenadrine
• NSAID + renal impairment = diclofenac topical
• NSAID + bleeding risk = choline magnesium trisalicylate
• Pruritus + anxiety = hydroxyzine
Two symptoms for the price of one

61
HIGH-QUALITY FAMILY MEETING
ELEMENTS

62
Definition of High-Quality Family Meeting
↑ Satisfaction
↑ Symptom
Control
Plan of Care
↓ PTSD
↑ Satisfaction
↓ Burnout
Goals
Established
↓ $$$
↓ LOS
↓ Readmissions
↓ Mortality
↓ Resource
Requirements
Standardized
EMR
Documentation
↑ Efficiency
Plan Consensus
Among
Treatment
Team
↑ Listening
↑ Understanding
Process Outcome
Patient/Family
Provider
Institution

63
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.

64
Family Meeting Formats
Format Roadmap Supportive Urgent Discharge Planning
Timing < 72 hours < 72 hours < 24 hours of clinical
change
> 24 hours prior to
discharge
Information
Flow
Patient  Provider Patient  Provider Patient  Provider Patient  Provider
Clinical
Participants
Primary Service
 Specialist(s)
Primary Service
+ Social Work
+ Chaplain
 Specialist(s)
Primary Service
 Specialist(s)
 Social Work
 Chaplain
Primary Service
+ Case Management
 Specialist(s)
Objective Possible treatment
courses of disease,
hoped for and worst
case scenarios
Hopes and fears of
patient and family,
identify educational and
resource deficits
Change in treatment
goals, code status, limits
on intensity of treatment
POLST form, follow-up,
out-patient support and
resources, negotiated
criteria for discharge

65
V.A.L.U.E.
• Value family statements
• Acknowledge family emotions
• Listen to the family
• Understand the patient as a person
• Elicit family questions
Chest. 2008 Oct; 134(4): 835–843

66
Silence
Type of Silence Clinician Intent
Awkward Often without clear intention (uncertainty), but also may reflect distractedness
or hostility, often masked by the clinician.
Invitational Wanting to give the patient a moment (or longer) to think about or feel what is
happening, often after an empathic response. The clinician deliberately creates
a silence meant to convey empathy, allow a patient time to think or feel, or to
invite the patient into the conversation in some way.
Compassionate Recognizing a spontaneous moment (or longer) of silence that has emerged in
the conversation, often when the clinician and patient share a feeling or the
clinician is actively generating a sense of compassion for the patient. The
clinician must:
• Give attention
• Maintain stable focus
• Have clarity of perception
J Palliat Med. 2009 Dec;12(12):1113-7.

67
HIGH-QUALITY FAMILY MEETING
COMMUNICATION TECHNIQUES & TOOLS

68
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/

69
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?

70
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

71
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

72
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.”

73
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

74
Teach-Back
A Priori A Posteriori
• Patient has seen a specialist or
been referred from another
physician.
• Minimum: Review documentation.
Ideally speak with other physician.
• “To make sure I provide you 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 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, what would you tell them?”
JBI Database System Rev Implement Rep. 2016 Jan;14(1):210-47

75
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

76
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

77
Naming the Four Basic Human Emotions
Happy
Sad
Scared Angry
J Exp Psychol Gen. 2016 Jun;145(6):708-30

78
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

79
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

80
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?

82
It Is All Going Downhill
Disease Trajectories
bioethicsarchive.georgetown.edu/pcbe/images/living_well_graph.gif

83
Birth
Actively
Dying
Death
Diagnosis
Treatment
New
Problem
Life
Simplified

84
Years – Months – Weeks – Days
Birth
Actively
Dying
Death
J Pain Symptom Manage. 2014 Jan; 47(1): 77–89.
Diagnosis
Treatment
New
Problem

85
Admission and Increased Mortality
Cohort Number %
Died in ED 205 / 76,060 0.27
Died within 30 days of discharge from ED 111 / 59,366 0.19
Died within 30 days of being admitted from ED 876 / 16,489 4.6
Emerg Med J. Aug 2006; 23(8): 601–603

86
Death Does NOT Respect Age
www.medicine.ox.ac.uk/bandolier/booth/Risk/dyingage.html

88
Disease-Specific vs Goal-Oriented
Outcomes depend on perspective
N Engl J Med 2012; 366:777-779

89
Three-Phase Model of Goals of Care
Curative or restorative phase (“beating
it”)
Comfort phase (“living with disease,
anticipating death”)
Terminal phase (“dying very soon”)
Definition
The default position for all patients —
all appropriate life-prolonging
treatment will be deployed as
indicated.
The disease is deemed to be incurable
and progressive.
Death is believed to be imminent (i.e.,
within a few days) — implementation of
a terminal care pathway.
Aim
GoC are directed towards cure,
prolonged disease remission and/or
restoration to the pre-episode health
status for those with chronic diseases,
especially in the aged care context.
GoC are modified in favor of comfort,
quality of life and dignity; period of
survival is no longer the sole
determinant of treatment choice; life
prolongation is a secondary objective of
medical treatment.
Comfort, quality of life and dignity are
the only considerations.
Definitions and Aims
Med J Aust 2014; 201 (8): 452-455

90
it”)
Prognosis
Life expectancy is probably the same as
the population mean because the
present health episode is unlikely to
affect longevity; a key question could be
“is there a reasonable chance of the
patient leaving hospital and living the
same life span as might have been
expected before the episode?”; a key
question in aged care and chronic
disease settings (where the goals might
be restorative) could be “is there a
reasonable chance of the patient
leaving hospital and/or returning to his
or her previous level of functioning?”
Life expectancy is usually months, but
sometimes years; a key question could
be “would I/we be surprised if this
patient died in the next 12 months?”
Life expectancy is hours or days; a key
question could be “would I/we be
surprised if this patient died this
week?”
Prognosis
BMJ 2010; 341: c4863
Med J Aust 2014; 201 (8): 452-455

91
it”)
Level of adverse effects
A high level of adverse effects and even
a significant chance of treatment-
related mortality might be accepted for
curative treatment (e.g., brain
aneurysm surgery, bone marrow
transplant); while pain and symptom
control should always be addressed,
comfort may be a secondary
consideration if it conflicts with curative
treatment.
Active treatment of the underlying
disease may be undertaken for specific
symptoms (e.g., radiotherapy or
chemotherapy for palliative end point in
cancer treatment) and/or short-term
life expectancy gains; treatment-related
adverse effects should be proportionate
to the goals and acceptable to the
patient.
Active treatment of the underlying
disease should stop; no treatment-
related toxicity is acceptable (this
applies to all medical, nursing and allied
health interventions e.g., turns in bed if
these are distressing).
Level of Adverse Effects
BMJ 2004; 329: 909-912
Med J Aust 2014; 201 (8): 452-455

92
it”)
Palliative phase (“living with disease,
Life-sustaining treatments
Given as needed. Life-sustaining treatments for other
chronic medical conditions are usually
continued (e.g., treatment with insulin
or anticonvulsants) in cases where
cessation would result in premature
death or preventable unpleasant
symptoms such as hyperglycemia and
seizures (i.e., symptoms unrelated to
the main disease that is anticipated to
cause death) or where quality of life
would be adversely affected.
Life-sustaining treatments for other
chronic medical conditions are usually
stopped (e.g., treatment with steroids,
insulin or anticonvulsants), unless doing
so would cause suffering.
Life-Sustaining Treatments
Med J Aust 2014; 201 (8): 452-455

93
it”)
Palliative phase (“living with disease,
Artificial nutrition and hydration
Given as needed. Given if indicated and desired (e.g.,
percutaneous endoscopic gastrostomy
feeding for head and neck cancer
patients with obstructed swallowing).
Usually ceased and replaced with
careful hand feeding and rigorous
mouth care.
Cardiopulmonary resuscitation
Given as needed. Usually not recommended but should
be discussed with the patient, if
competent, or their representative.
Contraindicated.
Artificial Nutrition and Hydration and Cardiopulmonary Resuscitation
Intern Med J 2013; 43: 77-83
Med J Aust 2014; 201 (8): 452-455

94
DNAR is a (Small) Part of Goals of Care
Birth
Actively
Dying (B)
Death (A)
(C)
www.polstil.org
Diagnosis
Treatment
New
Problem

95
Speaking and Translating Caring
Goals of Care
• Identify what is important to and
priorities for the patient.
• Identify what they hope to
achieve by receiving care.
• Identify what they fear will
happen because of the disease.
• Life review and legacy building
are separate, equal, but not
independent parts of care.
Plan of Care
• Representation of the goals of care in the form
of
– Documentation
• Advanced Directive
• Living Will
• HCPOA
– Orders
• POLST
• Code Status
– Medications
• Starting and stopping
– Services
• Social Work
• Chaplaincy
• Hospice
• Home Health
National Committee for Quality Assurance: Goals to Care

96
S.M.A.R.T. Goal
• Specific
– What does the patient mean to accomplish with this goal?
• Measurable
– What observable shows we are meeting the stated goal?
• Agreed Upon
– Are the patient, family, and provider all on the same page?
• Realistic
– Is this possible – physiologically, clinically, financially, humanly, etc.?
• Time-Bound
– When will this be observable?
General goals cannot be translated into a plan of care
Management Review. AMA FORUM. 70 (11): 35–36
National Committee for Quality Assurance: Goals to Care

97
Unclear Goals = Unplannable Caring
Goals of Care
• “I’m going to beat this [disease]!”
• “My family won’t let me go to a
nursing home.”
• “We’re going to fight this!”
• “I’m going to get my miracle.”
Plan of Care
• These are general, usually not agreed
upon, often unrealistic, and do not
meet a timeline consistent with life
expectancy.
• The plan of care in these case is to
explore:
– “Tell me what this means to you.”
– “Help me understand more about this
by telling me how you feel about…”
And get a family meeting with all the key
partners in the patient’s care both family
and providers.
vitaltalk.org

98
Family Meeting Talking Map
Step What you can 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 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

99
Clear Goals Lead to a Care Plan
Goals of Care
• “I want to be able to enjoy the
holidays with my family,
particularly my grandchildren.”
Plan of Care
• This is specific, measurable, can be
agreed upon, may be realistic, and
has a set time frame.
• Perhaps a chemotherapy “holiday”
or stopping hemodialysis after the
holidays. Certainly documenting
code status and likely involving
some sort of home nursing care, be
it private duty, home health, or
hospice.

100
REMAP (ET)
Step What you can say
Reframe why the status quo isn’t
working.
You may need to discuss serious news (eg a scan result) first. “Given this news, it seems
like a good time to talk about what to do now.” “We’re in a different place.”
Expect emotion & empathize.
“It’s hard to deal with all this.” “I can see you are really concerned about [x].” “Tell me
more about that—what are you worried about?” “Is it ok for us to talk about what this
means?”
Map the future.
“Given this situation, what’s most important for you?” “When you think about the
future, are there things you want to do?” “As you think towards the future, what
concerns you?”
Align with the patient’s values. “As I listen to you, it sounds the most important things are [x,y,z].”
Plan medical treatments that match
patient values.
“Here’s what I can do now that will help you do those important things. What do you
think about it?"
Expect questions about more
anticancer treatment.
“Here are the pros and cons of what you are asking about. Overall, my experience tells
me that more chemo would do more harm than good at this point. It’s hard to say that
though."
Talk about services that would help
before introducing hospice
“We’ve talked about wanting to conserve your energy for important things. One thing
that can help us is having a nurse come to your house to can help us adjust your
medicines so you don’t have to come in to clinic so often.
The best way I have to do that is to call hospice, because they can provide this service for
us, and more. "
vitaltalk.org

101
ARTIFICIAL NUTRITION & HYDRATION
PROS & CONS

102
Nutrition Dependent Disease And Disease Independent of Nutrition
Malnutrition
• Malnutrition or malnourishment
is a condition that results from
eating a diet in which nutrients
are either not enough or are too
much such that the diet causes
health problems.
Cachexia
• Cachexia or wasting syndrome is
loss of weight, muscle atrophy,
fatigue, weakness, and significant
loss of appetite in someone who
is not actively trying to lose
weight.

103
Benefits of Artificial Nutrition and Hydration
• Physiological support for temporary inability to swallow or
to use their gastrointestinal tract due to otherwise
reversible conditions.
• Artificial nutrition and hydration (ANH) may prolong life
and allow a more accurate assessment of the patient's
chance of recovery.
• For patients with chronic disabilities who are unable to take
in adequate nutrition by mouth and who enjoy the life they
lead, ANH is physiologically and qualitatively useful.
Nutr Clin Pract. 2006 ;21:118-125

104
Supportive NOT Curative
• ANH alone, while sometimes supportive, does not
cure or reverse any terminal or irreversible disease
or injury.
• Multiple studies have consistently failed to show
meaningful clinical benefit from ANH in terminally
ill patients.
Nutr Clin Pract. 2006 ;21:118-125
Nutr Clin Pract.1994;9:91– 100

105
System Shut Down
• Terminal illness is a biochemical and metabolic
process = slowing of bodily function.
– Loss of appetite and thirst.
– Difficulty swallowing.
– Simultaneous inability to utilize nutrients.
• Few symptoms from dehydration or lack of
nutrition.
ANH is “counterpalliative”
Palliat Support Care. 2006;4:135–43.
NEJM. 2004;350:2582–90.
Medsurg Nurs. 2000;9:233–44.

106
Little Quantity-of-Life, Less Quality-of-Life
• ANH support by either the enteral or parenteral route
to terminally ill patients suggests increased suffering
without improved outcome.
• ANH, whether provided by “feeding tube” or vein, is
often associated with significant complications,
including bleeding, infection, physical restraints such as
tying the patient down, and in some cases a more
rapid death.
• TPN does not alleviate hunger.
JAMA.1999 ;282:1365– 1370
J Gerontol.1998 ;53:M207– M213
Lancet.1997 ;349:496– 498
Appetite. 1989;13(2):129-41

107
Artificial Nutrition and Hydration
• Amyotrophic lateral sclerosis
– Improves quality of life in patients with the bulbar form of
amyotrophic lateral sclerosis.
• Cancer
– A review of 70 published, prospective, randomized trials of ANH
among cancer patients failed to demonstrate the clinical efficacy of
nutrition support for such patients.
• Dementia
– Tube feeding does not increase life expectancy and worsens quality
of life in end-stage dementia, i.e. when dysphagia develops due to
dementia.
End-of-Life Indications and Contraindications
Clin Nutr. 2006 Apr;25(2):330-60
Nutr Clin Pract. 2006 ;21:118-125

108
EMOTIONS & ETHICS

109
Emotional Perspective
• Family members
– Unwillingness to accept terminal prognosis.
– Belief in cruelty of dying process if ANH not administered.
– Need to demand interventions to avoid guilt.
– Would not ask for themselves, but do ask for family members.
• Physicians
– Lack of familiarity with palliative care techniques and evidence.
– Length of time required to educate families on true facts of ANH.
– Reimbursement for insertion of PEG tube, etc.
– Desire to avoid controversial discussions.
– Fears of litigation.
• Administrators
– Reimbursement for tube feedings, etc.
– Fear of regulatory sanctions if ANH not administered (nursing homes).
– Extra time and staff needed to assist with oral feedings in weakened or demented patients.
– Fears of litigation.
• Withholding ≠ Withdrawal
Clin Nutr. 2016 Jun;35(3):545-56
J Gen Intern Med. 2011 Sep;26(9):1053-8
J Am Med Dir Assoc. 2007;8:224–28.

110
Ethical Perspective
• Prerequisites of artificial nutrition and hydration
are:
1. an indication for a medical treatment, and
2. the definition of a therapeutic goal to be achieved, and
3. the will of the patient and his or her informed consent.
In all cases however the treating physician has to take the
final decision and responsibility.
• Withholding = Withdrawal
Clin Nutr. 2016 Jun;35(3):545-56
J Gen Intern Med. 2011 Sep;26(9):1053-8
J Am Med Dir Assoc. 2007;8:224–28.

111
C for Critical or Comfort
Critical Care
• Mechanical Ventilation
• Vasopressors
• Artificial Nutrition and Hydration
– D5 or D10 is not nutritional
support
Comfort Care
• Supplemental oxygen for comfort
• Symptom management
• Pleasure feeding

112
TALKING WITH PATIENTS AND FAMILIES

113
Talk Early. Talk Often.
• Anticipate trajectory of disease so that you can
have continuing conversations about goals-of-care
and advance directives.
• Making decisions empowers patients and
decreases burden on family because these
conversations have already occurred.

114
REMAP (ET) Artificial Nutrition and Hydration
Step What you say or do
Reframe why the artificial nutrition
and hydration aren’t appropriate.
You may need to discuss dysphagia or why artificial nutrition and hydration will not be helpful “Given this news, it
seems like a good time to talk about what to do now.”
Expect emotion and empathize.
“It’s hard to deal with all this.” “I can see you are really concerned about [x].” “Tell me more about that—what are
you worried about?” “Is it OK for us to talk about what this means?” “It is human nature to worry about feeding our
loved ones.”
Map the future.
“Given this situation, what’s most important for you?” “When you think about the future, are there things you
want to do?” “As you think towards the future, what concerns you?”
Align with the patient’s values. “As I listen to you, it sounds the most important things are [x,y,z]."
Plan medical treatments that match
patient values.
“Here’s what I can do now that will help you do those important things. What do you think about it?“ “Trying to
force calories down a tube won’t make you feel any better or live any longer. What do you think about talking about
things that we can do that will help you going forward?”
Expect questions about more
artificial nutrition and hydration
“Here are the pros and cons of what you are asking about. Overall, the studies of artificial nutrition and hydration in
advanced illness tells me that trying it would do more harm than good at this point.“ “’Pleasure feeding’ or ‘comfort
feeding’ focuses on the humanness of enjoying the taste of favorite foods in the company of those we most enjoy. If
calories won’t fix their disease trying to push them will likely do more harm than good.”
Talk about continuing to provide
aggressive care but now focused on
comfort rather than cure.
“We can help your [x] have as much good time as they can going forward. We’ll focus on the joy of being able to
taste food and be around family. Does that sound like a good plan?”
vitaltalk.org

115
VOLUNTARY STOPPING EATING & DRINKING (VSED)

116
Voluntary Stopping Eating and Drinking (VSED)
• Why?
– To preserve patient autonomy.
– To retain control.
– To hasten death because of unacceptable suffering without
infringing on fundamental ethical principles of Western
society.
– “Being tired of life” or “having it done”.
– Viewing themselves as a burden to their family members.

117
Voluntary Stopping Eating and Drinking (VSED)
• Variant of stopping life-sustaining treatment.
• Not physician assisted suicide (PSA):
– Provider must assess decision making capacity.
– Provider need only agree not to interfere.
– Provider should be prepared to address symptom
burden.
• VSED usually leads to death in 1-3 weeks.
“The desire for a hastened death regularly occurs, but such thoughts are frequently kept secret by
patients unless clinicians specifically inquire.”
BMC Palliat Care. 2014 Jan 8;13(1)
Ann Intern Med. 2000 Mar 21;132(6):488-93
Widener Law Rev. 2011, 17: 351-361

118
PROGNOSTICATION AT THE
END-OF-LIFE

119
Identifying the Actively Dying Patient
Profound progressive weakness
Bed-bound state
Sleeping much of the time
Indifference to food and fluids
Difficulty swallowing
Disorientation to time, with increasingly short attention span
Low or lower blood pressure not related to hypovolemia
Urinary incontinence or retention caused by weakness
Oliguria (positive LR 15.2, 95% CI 13.4-17.1)
Drooping of the nasolabial fold (positive LR 8.3, 95% CI 7.7-8.9)
Loss of ability to close eyes (positive LR 13.6, 95% CI 11.7-15.5)
Nonreactive pupils (positive LR 16.7, 95% CI 14.9-18.6)
Hallucinations involving previously deceased important individuals
References to going home or similar themes
Changes in respiratory rate and pattern
Respiration with mandibular movement (positive LR 10, 95% CI
9.1-10.9)
Cheyne-Stoke breathing (positive LR 12.4, 95% CI 10.8-13.9)
Apnea
Hyperextension of the neck (postive LR 7.3, 95% CI 6.7-8)
Grunting of the vocal cords (positive LR 11.8, 95% CI 10.3-13.4)
Noisy breathing, pooling of airway secretions — “death rattle”
(positive LR 9, 95% CI 8.1-9.8)
Mottling and cooling of the skin due to vasomotor instability with
venous pooling, particularly tibial
Dropping blood pressure with rising, weak pulse
Pulselessness of the radial artery (positive LR 15.6, 95% CI
13.7-17.4)
Mental status changes (terminal delirium, terminal restlessness,
agitation, coma)
Decreased response to verbal stimuli (positive LR 8.3, 95% CI
7.7-9)
Decreased response to visual stimuli (positive LR 6.7, 95% CI
6.3-7.1)
Bicanovsky L. Comfort Care: Symptom Control in the Dying. In: Palliative Medicine, Walsh D, Caraceni AT, Fainsinger R, et al
(Eds), Saunders, Philadelphia 2009.
Oncologist. 2014;19(6):681
Cancer. 2015;121(6):960.

121
Palliative Performance Scale (PPS)
PPS Level Ambulation Activity & Evidence of Disease Self-Care Intake Conscious Level Life Expectancy
100% Full
Normal activity & work No
evidence of disease
Full Normal Full
90% Full
Normal activity & work Some
evidence of disease
Full Normal Full
80% Full
Normal activity with Effort Some
evidence of disease
Full Normal or reduced Full
70% Reduced
Unable Normal Job/Work
Significant disease
Full Normal or reduced Full Months
60% Reduced
Unable hobby/house work
Significant disease
Occasional assistance necessary Normal or reduced Full or Confusion Weeks-Months
50% Mainly Sit/Lie
Unable to do any work Extensive
disease
Considerable assistance required Normal or reduced Full or Confusion Weeks
40% Mainly in Bed
Unable to do most activity
Extensive disease
Mainly assistance Normal or reduced Full or Drowsy +/- Confusion Weeks
30% Totally Bed Bound
Unable to do any activity Extensive
disease
Total Care Normal or reduced Full or Drowsy +/- Confusion Days-Weeks
disease
Total Care Minimal to sips Full or Drowsy +/- Confusion Days
disease
Total Care Mouth care only Drowsy or Coma +/- Confusion Days
0% Death - - -
Victoria Hospice Society

122
3-Day Mortality Rate Estimates
PPS
Drooping of nasolabial fold,
present/absent
3-day mortality rate (%)
≤ 20% present 94
≤ 20% absent 42
30 to 60% 16
≥70% 3
Cancer 2015; 3914.

124
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

125
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

126
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

127
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.

128
COMFORT-BASED RESPIRATORY CARE

129
Objective
• 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.

130
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.

131
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

132
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

133
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