Presentation on primary and specialty palliative care, covering what is palliative care, basics of primary palliative care including pain and symptom management, and referral criteria for out-patient specialty palliative care.

1. OUT-PATIENT PRIMARY AND
SPECIALTY PALLIATIVE CARE
Michael Aref, MD, PhD, FACP, FHM
Assistant Medical Director Palliative Medicine
Carle Hospital and Physician Group

2. Disclosure of Financial Relationships and Conflicts of Interest
None

3. Objectives
• What is palliative care?
• Basics of primary palliative care.
• When to refer for specialty palliative care.

4. Mission and Vision
Mission
• Carle Palliative Care
Services will serve patients
with life-limiting illness,
their families, and providers
in their search for meaning
and value, alleviation of
suffering, and help provide
patient-centered
perspective on goals-of-
care.
Vision
• Carle Palliative Care
Services will be an evolving
leader in high value, high
quality primary and
specialist palliative care
delivery, education, and
research.

5. WHAT IS PALLIATIVE CARE?

6. Suffering
Quality
of
Life
The Problem

7. Palliative Care
SufferingQuality
of
Life
Part of the Solution

8. 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.1
• 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.2
• Palliative care is the relieving or soothing of symptoms of a disease or
disorder while maintaining the highest possible quality of life for patients.3
1 www.who.int/cancer/palliative/denition/en/
2 www.capc.org/about/palliative-care/
3 palliativedoctors.org/palliative/care

9. 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.
Doyle D, Oxford Textbook of Palliative Medicine, 3 ed.

10. “Are They Going Palliative?”
• Is a philosophy of care for seriously ill patients, it is
– NOT a place
– NOT a status
– NOT limited by curative intent

11. Type Goal Investigations Treatments Setting
Active
(Blue)
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
(Green)
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
(Yellow)
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.

12. Evolving Model of Palliative Care
Cure/Life-prolonging
Intent
Palliative/
Comfort Intent
“Active
Treatment”
Palliative
Care
D
E
A
T
H
D
E
A
T
H
www.nationalconsensusproject.org

13. Evolving Model of Palliative Care
D
E
A
T
H
Comfort-
Focused Care
Psychological and Spiritual Support
Disease-
Focused Care
www.nationalconsensusproject.org

14. Palliative Care and Hospice
Rosenberg, M et al, Clin Geriatr Med 2013; 29:1–29
Palliative Care
Symptom Management of Life Limiting Illness
End of Life Care/Hospice
Symptom Management and Comfort Care

15. Choosing Wisely
• Don’t delay palliative care for a patient with
serious illness who has physical,
psychological, social or spiritual distress
because they are pursuing disease-directed
treatment.
www.choosingwisely.org/doctor-patient-lists/american-academy-of-hospice-palliative-medicine/

16. DO IT!
Palliative care is like intubation, if you think it needs
to be done,

17. Curative and Palliative
Symptom
YesNo
Disease
modifiable
?
Review
Alleviate symptom
through disease-
specific intervention
Alleviate symptom
through
global/systemic
intervention
J Palliat Med. 2012; 15(1):106-14

18. And not or
 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).

19. Curative or Palliative?
• Morphine
– No mortality benefit.
• Oxygen
– No mortality benefit (unless hypoxic).
• Nitrates
– No mortality benefit.
• Aspirin
– OK, now we start decreasing mortality (anti-platelet effects onset of
action is 2 hours, analgesic effect is 10-15 minutes).

20. BASICS OF PRIMARY PALLIATIVE
CARE

21. Total Symptoms
Pain
• Physical problems (multiple)
• Anxiety, anger and depression—
elements of psychological distress
• Interpersonal problems — social
issues, financial stress, family
tensions
• Nonacceptance or spiritual distress
Dyspnea
• Physical symptoms
• Psychological concerns
• Social impact
• Existential suffering
Curr Opin Support Palliat Care. 2008; 2(2):110-3

22. Physical
Cause?
Assoc. Sx
Debility and Fatigue
Social
Role
Relationship
Occupation
Financial Cost
Spiritual
Existential
coping
Religious
beliefs
Meaning of
life/illness
Personal value
Psychological
Emotional
Response
Comorbid mood
disorder ± anxiety
Adjustment to new
baseline
Symptom
Chaplaincy
Art & Music Therapy
Social Work
Financial Navigator
Occupational Therapy
Social Work
Psychology
Psychiatry
Interventional Pain
Service
Palliative Care
Other Specialties
Pharmacy
Physical Therapy
Total Symptom / Suffering Model

23. Maslow’s Hierarchy of Needs
Self-Actualization
Esteem
Love / Belonging
Safety
Physiological
Physical
Psych
Social
Spiritual

24. BASICS OF PRIMARY PALLIATIVE
CARE
Pain

25. Pain Classifications
Somatic
(Nocioceptive)
Visceral
(Nocioceptive)
Neuropathic
(Central)
Neuropathic
(Peripheral)
Psychogenic
Etiology
Skin and Deep
Tissue Damage
Organ Damage Nerve Damage Nerve Damage
Primary psychological
origin or worsening
due to mood disorder
Temporal
Dependence
Acute or Chronic Acute Chronic > Acute Chronic > Acute Acute or Chronic
Characteristics
Localized dull or
aching
Diffuse, referred to
superficial structure,
sickening, deep,
squeezing, and dull
Burning, coldness, "pins n’
needles", numbness and itching
Mixed, non-
physiologic
Examples
Fibromyalgia
Tension headache
Chronic back pain
Arhtritis
Irritable Bowel Syndrome
Cystitis
Prostate Pain
Endometriosis
Central pain
syndrome 2° stroke,
MS, tumor
Diabetic neuropathy
Shingles
Complex regional pain
syndrome
Depression
Anxiety
Adjustment disorders
Opioids First line First line Third line
Second line
(tramadol,
oxycodone,
methadone)
No
Physical

26. 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 and
“self-medication”.
• What is your patient’s goal?
• What is the plan and is everyone in
agreement?
Physical
Proc (Bayl Univ Med Cent). 2000 Jul; 13(3): 236–239.

27. Opiate-Induced Bowel Dysfunction Prophylaxis
• Non-pharmacological
– Oral hydration
– Physical activity
– Privacy/scheduled visit to commode
• Pharmacological
– Scheduled senna (stimulant laxative), hold for diarrhea
– Scheduled bisacodyl (stimulant laxative), hold if bowel movement in
the past 24°
– Scheduled polyethylene glycol (osmotic stool softener), hold if bowel
movement in the past 48°
– Do NOT use bulk producers (i.e. fiber)
– Consider adding mineral oil (lubricating stool softener)
pain-topics.org/pdf/Managing_Opioid-Induced_Constipation.pdf
Physical

28. Dose Units Medication Route Real World
15 mg morphine PO
15 mg hydrocodone PO
10 mg oxycodone PO
4 mg hydromorphone PO
5 mg morphine IV
0.75 mg hydromorphone IV
0.05 mg fentanyl IV
Dose Equivalents
Physical

29. WHO Analgesic Ladder
Canadian Family Physician 2010; 56(6):514-517
Physical

30. Descending the Ladder
Acute Pain < 3 months
• Wean short acting dose by 25-50%
per day until 1-2 tablets Q4H of
“low” dose medication then wean
dosing interval every 3 days:
✓ Q6H-Q8H-Q12H-QHS
✓ 48 “doses”
Chronic Pain (> 3 months)
• Wean long acting dose by 10%
every week.
Physical
paincommunity.org/blog/wp-content/uploads/Safely_Tapering_Opioids.pdf

31. 2-for-1 Specials
• Itching + anxiety = hydroxyzine
• Neuropathic pain + muscle spasm = gabapentin
• Neuropathic pain + anxiety = pregabalin
• Depression + neuropathic pain = duloxetine
Physical

32. BASICS OF PRIMARY PALLIATIVE
CARE
Nausea

33. 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,
Ondansetron
http://www.mypcnow.org/blank-ggr79
Physical

34. Nausea
• Menthol salve for olfactory-induced nausea
• Wean IV anti-emetics for at least 24 hours prior to
discharge
• Oral anti-emetics for nausea prophylaxis
• Sublingual and rectal for acute nausea
Physical

35. BASICS OF PRIMARY PALLIATIVE
CARE
Complications of Opiates

36. Case
• 23 y/o WF with chronic abdominal pain, nausea, and food
aversion secondary to multiple surgeries for hereditary
pancreatitis and complications thereof.
• Non-malignant abdominal pain managed with progressive
increases in opiates, now on high-dose opiates, 200 mcg/hr
fentanyl patch with 4-8 mg of hydromorphone as needed
every 2-3 hours
• Mother strong advocate for patient.
• Consulted for pain management.

37. How is she not dead?!?

38. CDC Grand Rounds, January 13, 2012 / 61(01);10-13
Opioid Overdose Risk Factors

39. Course
• Basal opiates increased and discharged home
• Patient seen on subsequent hospitalizations for other
complications, e.g. line infection, portal vein thrombosis.
Abdominal pain continues to worsen.
• Having built a relationship with patient, discussed concerns
that opiates were worsening her pain. Agreeable to
weaning off opiates.

40. Narcotic Bowel Syndrome
Chronic or frequently recurring abdominal pain that is treated with acute high
dose or chronic narcotics and all of the following:
• 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.
Clin Gastroenterol Hepatol. Oct 2007; 5(10): 1126–1122.

41. Case
• 72 y/o WM with metastatic pancreatic cancer, admitted for
pain control.
• Patient has been on rapidly escalating doses of morphine.
Delirious, in his lucid moments he weeps, morphine has
been aggressively increased. In the past 24 hours he
developed intermittent jerking of his limbs.
• Consulted for pain management.

42. 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

43. Course
• Patient was switched to fentanyl, but at 75% equianalgesic
dose.
• Pain controlled, delirium improved, myoclonic jerks
resolved.
• Patient died on in-patient hospice.

44. WHEN TO REFER TO SPECIALTY
PALLIATIVE CARE

45. Primary and Specialty Palliative Care
Primary Palliative Care
• Referrals
• Feedback
• Managing patients closer to
home
Specialty Palliative Care
• Education
• Support
• Adding value to preexisting
exemplary care

46. Physical Psychological Social Spiritual
• Pain
• Dyspnea
• Cough
• Nausea/Vomiting
• Hiccoughs
• Constipation
• Diarrhea
• Fatigue
• Malaise
• Fever
• Pruritus
• Anorexia
• Grief
• Anger
• Fear
• Anxiety
• Depression
• Delirium
• Insomnia
• Ill adjustment to
new baseline
• Change in role
• Relationship
issues due to
disease
• Career pressures
due to disease
• Financial stressors
due to disease
• Existential
suffering
• Crisis of faith due
to illness
• Loss of meaning in
life/illness
• Loss of personal
value
The burden of an undesirable situation can include:
Sx
Burden
HCQOL
Is this symptom burden
due to a state of health
characterized by
functional impairment
with cellular, tissue, or
organ level structural
change?
Healthcare
Quality-of-LifeSymptom
Burden
Does the patient report having inadequately relieved symptom
burden?
Does the patient utilize healthcare resources due
to inadequately relieved symptom burden?
Does the patient have marginally controlled symptom burden and face
treatment that will exacerbate symptom burden?
Treatment Associated
Symptom Burden
In-Patient
Healthcare
Quality-of-Life
Symptom
Burden
Healthcare
Quality-of-Life
Symptom
Burden
symp·tom sim(p)təm/ noun
a sign of the existence of something, especially of an undesirable situation

47. 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

48. Carle Palliative Medicine Criteria
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

49. Carle Palliative Medicine Criteria
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

50. THANK YOU
Questions? Concerns? Comments?