End of Life Care

Care of Patients Facing the
End of Life and Their
Families
M. Elizabeth Paulk, M.D., F.A.C.P.
July 13, 2015

M. Elizabeth Paulk, M.D. has no relationships
with any entity producing, marketing, re-selling,
or distributing health care goods or services
consumed by, or used on or near, patients.
Disclosure of Financial Relationships

Welcome!
 Don’t worry – it is all going to be ok.
 Do it right – you get the credit.
 Do it wrong – it’s the resident’s fault.
 Believe it or not – it will be fun

The English view death as imminent,
Canadians view death as inevitable,
Americans view death as optional.
- unknown

Anticancer Treatment
Cancer pain
relief and
palliative care
Anticancer Treatment
Traditional Allocation of Resources
Proposed Model of Resource Allocation
Cancer pain relief and palliative care

Palliative Care
 Making life as easy as possible for
patients and families living with
serious illness
 Our team: MD, Social Worker, Nurse,
Chaplain, MA, and Clerk
 What we do: Consults, Clinics
 When to call us: life expectancy < 1
year
 How to call us: Janice 2-5805, or
page through directory

Inpatient Consults
 Pain and Symptom Management
 Social Work Disasters
 Discussion of Goals of Care:
◦ Artificial nutrition/hydration
◦ DNR status
◦ Breaking bad news
 Clinic follow-up
 PLEASE – have a question in mind when
you call.
 Please – if patient has been seen, call
the provider who wrote the note!

Clinic Visits
 Pain and Symptom management
 Discussion of Goals of Care
 Provide a home, close follow-up for
patients and their families

Reality of the Evidence in
Palliative Medicine
 What does the evidence support?
◦ Very little evidence available
 Patients are ill
 Drugs are mostly generics
 What do clinicians actually do in
practice?
◦ Almost entirely empiric
◦ Things that are cheap

End of Life in the ICU
 10-20% of all ICU patients die
 Often illnesses are unanticipated –
little previous discussion of illness with
family
 Prognostication variable
 Culture of aggressive treatment
 Patients not generally able to
participate
◦ May seem dehumanized by
circumstances

© 2004 Lippincott Williams & Wilkins, Inc. Published by Lippincott Williams & Wilkins, Inc. 2
Symptom Burden in the Chronically Critically Ill
The symptom burden of chronic critical illness *.
Nelson, Judith; MD, JD; Meier, Diane; Litke, Ann; Natale,
Dana; Siegel, Robert; Morrison, R
Critical Care Medicine. 32(7):1527-1534, July 2004.
Percent of patients reporting at least one symptom
episode rated as moderate or severe (n = 36).

Simple Strategies for Symptom
Management in ICU
 Good oral care helps mitigate thirst
 Hunger relieved by feeding
 Actively elicit symptoms and treat
◦ Dypsnea
◦ Pain
◦ Depression
◦ Anxiety
 To the extent it is safe and feasible,
minimize sleep disruption and liberalize
visitation
 Optimize communication

Five Most Common
Symptoms
 Pain
 Nausea/vomiting
 Breathlessness
 Weight loss
 Weakness / fatigue
Brunnhuber, K., Nash, S., Meier, D.E., et al (2008). Putting evidence into practice:
Palliative care (BMJ Group). Retrieved from Clinical Evidence website:
http://clinicalevidence.bmj.com/downloads/end-of-life.pdf

Pain is a more terrible lord of
mankind than even death
itself.
Albert
Schweitzer

Basics of Pain Management
 Use a pain scale
 WHO pain ladder
 Use standing doses, not prn
 Always have a breakthrough pain plan
◦ 10% of daily opioid dose q 1-2 h
◦ Reassess dosage needs daily

Assessment of Pain
 PQRST
◦ P = Provoking/Palliating factors
◦ Q = Quality in patient’s own words
◦ R = Radiates
◦ S = Severity
◦ T = Time
• Interference with activities, degree to which patient is bothered
• Goals for management
• Recommended instruments:
• McGill Pain Questionnaire (MPQ) and its short form (SF-MPQ)
• Edmonton Symptom Assessment System (ESAS), and
• Memorial Symptom Assessment Scale (MSAS)
• For patients with dementia:
• Many dementia patients can use established scales
• Observational pain scale underestimates patients’ estimate of pain
Brunnhuber, K., Nash, S., Meier, D.E., et al (2008)

Pain assessment scales.
Abrahm J L , Ann Intern
Med 1999;131:37-46
©1999 by American College of Physicians

WHO 3-step
Ladder
1 mild (1-3)
2 moderate
(4-6)
3 severe (7-10)
Morphine
Hydromorphone
Methadone
Levorphanol
Fentanyl
Oxycodone
± Adjuvants
A/Codeine
A/Hydrocodone
A/Oxycodone
A/Dihydrocodeine
Tramadol
± Adjuvants
ASA
Acetaminophen
NSAIDs
± Adjuvants

Practical Issues in Pain
Management KISS
 WHO Step one :
◦ Use your favorite NSAID &/or APAP
 Be vigilant for contraindications
 Protect the stomach
• WHO Step two:
• Pick the combination agent of your choice
• Watch APAP doses
• WHO Step three:
• Hydrocodone:morphine is 1:1
• Dose your pure opioid agents like insulin:
• long acting basal agent (e.g., MSContin)
• short acting rescue as needed (MSIR or
morphine elixir)
 For patients who need a change in route of
administration, remember that conversion of oral
MSO4 to IV 3:1
 PREVENT CONSTIPATION!

The Pain Curve
Time
OpioidLevel
Pain Threshhold
Pain Threshhold

Texas Triplicate Requirement
 All schedule 2 prescriptions have to be
written on a special form called a
Triplicate.
 It is not actually a triplicate form – just
one piece of blue paper.
 YOUR ATTENDING MUST WRITE
THIS so make sure it gets done during
rounds.
 You can write for one month, no refills.

Practical Concerns about
Opioids
• Risk of addiction low when used
properly*
• Respiratory depression unlikely at
recommended doses
• New drugs no better than morphine
• Regulatory issues
• Thoroughly review and document pmhx,
sochx, functional status, response to
medications
◦ For check list of best practices:
http://hrsa.dshs.wa.gov/Pharmacy/Best_Practi
ces_Summary_Checklist.pdf

Biblical Tenet of Palliative
Care
The hand that doth hold the
pen that scribes the opioid,
yea let that hand also
prescribe the laxative.

Myths and Misconceptions:
Hospice
 No inpatient hospices in Dallas
 DNR NOT required for home hospice
 Full-time caregiver in the home NOT
REQUIRED
 Cannot be arranged on the day of
discharge
 LONG waiting list for non-funded patients
(01, 20) - 2 to 3 weeks
 Meds, DME not provided for non-funded
patients

Neuropathic Pain
 Tricyclic Antidepressants (1 in 3 pts
respond)
◦ Desipramine, other TCA’s, venlafaxine
◦ Use limited by CV adverse effects
 Gabapentin/Pregabalin (1 in 4 patients
respond)
◦ usual effective dose 900–1800 mg / d; max may be > 3600
mg / d
◦ minimal adverse effects
◦ drowsiness, tolerance develops within days
• Systemic administration of local anesthetics
• Lidocaine or mexiletine effective in 30 RCT’s
Combination may be the most effective

Bone pain
 Metastasis to bone
◦ 70% of pt with prostate, breast CA
◦ 30% of pt with thyroid, lung, bladder CA
 Multidisciplinary approach, including:
 Analgesics: opioids, NSAIDs
 Disease modifying therapy (chemotherapy, hormone therapy)
 Corticosteroids
 Bisphosphonates
 Radiopharmaceuticals (strontium, samarium)
 External beam radiation
 Orthopedic intervention
 External bracing

Depression
Loss of social position,
job, prestige, income
Loss of role in family
Insomnia, chronic fatigue
Sense of helplessness
Disfigurement
Anger
Bureaucratic bungling
Delays in diagnosis
unavailable physicians
uncommunicative physicians
Failure of therapy
Friends who do not visit
Total
Pain
Anxiety
Fear of hospital or nursing home
Fear of pain
Worry about family and finances
Fear of death
Spiritual unrest, uncertainty about future
Physical pain
Other symptoms
Adverse effects of treatment
O'Neill, B., Fallon, M. BMJ 1997, 315p. 801-804

Nausea/Vomiting
• Patients with cancer
• 13-17% of terminally ill cancer patients in the
last 1-2 weeks of life
• 6-68% of all patients with cancer
 Patients with other illnesses:
◦ AIDS: 43% to 49% of patients
◦ Heart disease: 17% to 48% of patients
◦ Renal disease: 30% to 43% of patients
 Assessment: simple visual analogue
scales or numerical rating scales

Management of
Nausea/VomitingCause Receptors Involved Drug Classes Drug Examples
V – Vestibular Cholinergic
Histaminic
Anticholinergic
Antihistaminic
Scopolamine
Promethazine
Diphen-
hydramine
O – Obstructive Cholinergic
Histaminic
5HT3
Drugs stimulating the
myenteric plexus
Senna products
M- Motile
(dysmotility of
upper gut)
Cholinergic
Histaminic
5HT3
Prokinetics
(stimulating 5HT4
receptors)
Prokinetics, metoclo-
pramide
I –
infectious/inflam-
matory
Cholinergic
Histaminic
5HT3
Neurokinin 1
Anticholinergic
Antihistaminic
5HT3 antagonists
Neurokinin 1 ant.
Anti-inflammatory
Scopolamine
Promethazine
Diphenhydramine
Odansetron
Apprepitant
Corticosteroids
Brunnhuber, K., Nash, S., Meier, D.E., et al (2008)See handout for doses, cost
Treat anxiety if present

Practical Issues in Management
of Nausea/Vomiting
 Many neurotransmitters involved
◦ Use “dirty” drugs
◦ Let side effects work for you
 Strategy analogous to HTN
management
◦ Stack up drugs
◦ Once symptoms controlled can start to
wean

Empiric Recommendations for
Constipation Management
 Prophylaxis for all patients on opioids
with senna/colace 2 PO BID
 If inadequate, use PEG OTC – 8 oz in
AM, and then q 6h until BM
 Manually disimpact if necessary
 Consider subcutaneous
methylnaltrexone if refractory

Dyspnea
 Prevalence
◦ 17-30% of patients living with cancer
◦ 90-95% of end-stage COPD patients
◦ 60-88% of end-stage heart disease
patients
 Increasingly common as the end of life
approaches
 Best assessment is patient report

Dyspnea
 Recent ACP guidelines show evidence
supports treatment with:
◦ Oxygen for hypoxemia
 Strong evidence for COPD & exercise
◦ Opioids
 Theoretical effect of respiratory
depression not supported by the
literature
◦ Beta-agonists for dyspnea from COPD
Qaseem, A, Snow, V., Shekelle, P, et al. Ann Intern Med. 2008;148:141-146

Practical Aspects in the
Management of Dyspnea
 Mild dyspnea
◦ Select a weak opioid and offer q2h prn
dyspnea
 Watch your APAP doses
 Start lower in elderly
 Severe dyspnea
◦ Opioid naïve – morphine IR (5-15mg) or
hydromorphone (0.5 – 2mg) q 2-4h prn
◦ On scheduled opioids already – 10% of
total daily dose given q1h prn

Practical Aspects of Managing
Dyspnea
EPEC Project, American Medical Association, 1999
Pursed lip
breathing
, smoke

Dyspnea
Anxiolytics to decrease the anxiety associated with dyspnea:
*there is not strong evidence to support this practice,
but this is commonly done in hospice patients and is empirically effective.

Fatigue
• Approximately 40% of cancer patients
experience fatigue at the time of
diagnosis
• Worse during or after chemotherapy
• Higher than 75% in patients with
advanced cancer
• Common with COPD, heart failure
• Multifactorial
• Best evaluated by self-assessment
measures
• No gold standard measurement

Management of Fatigue
 Evidence supports use of:
◦ Psychological, psychoeducational interventions
(small)
◦ Methylphenidate – small, significant improvement
• Exercise - small improvement
 Energy conservation, activity management -
small but significant effect
 No effect: progestational steroids,
paroxetine, or multivitamins.
 Insufficient data to recommend any specific
complementary therapies

Practical aspects in the
management
of fatigue / weakness . . .
 Promote energy conservation
 Evaluate medications
 Optimize fluid, electrolyte intake
 Permission to rest
 Clarify role of underlying illness
 Educate, support patient, family
 Include other disciplines

Practical aspects in the
management
of fatigue / weakness Dexamethasone
◦ 4mg PO once daily
◦ feeling of well-being, increased energy
◦ effect may wane after 4-6 weeks
◦ continue until death
 Methylphenidate
◦ 5mg PO q 8AM and q noon
◦ May increase up to 20mg daily
 Do not give after 2pm to avoid interfering with
sleep

Anorexia/Cachexia
• Prevalence: 70% of patients with
advanced cancer
• Best assessment is patient report
• Treatments:
• Megesteral acetate,
medroxyprogesterone
• Corticosteroids
• Orally consumed supplements
• Parenteral nutrition

Empiric Observations about
Anorexia/Cachexia
 Family education is key
 Tailor diet to patient preferences
◦ Fresh fruit
 Melon, peaches, grapes
◦ Things that are cold and sweet
 Ice cream, popsicles, jello
◦ Lemon drops, zinc lozenges for bad taste in
mouth
◦ Most patients do not want dairy, fried foods
 Manage grief, disappointment about change
in diet
 Encourage socializing at meal times even if
patient does not want to eat

Depression
 Recent ACP Guidelines:
◦ Physicians should screen for and treat
depression in patients facing end-of-life
◦ Evidence supports use of TCA’s and
SSRI’s
◦ Psychosocial interventions also effective
 Some providers will use methylphenidate in
patients with very short life expectancy

Mental Health
 About 50% of advanced cancer
patients meet criteria for a psychiatric
disorder
◦ adjustment disorders (11% to 35%)
◦ major depression (5% to 26%)
◦ less evidence for patients with cardiac,
pulmonary, renal, or neurologic disease.
 Sources of anxiety:
◦ symptom management
◦ isolation
◦ family needs

Assessment of Depression
 No recommended instrument
◦ Cannot use vegetative sx as a marker
◦ Low mood, low interest best markers, with
sensitivity of 91% and specificity of 86%
 Must be actively solicit sx, because pts may:
◦ view psychological distress as being appropriate
◦ consider that distress reflects a lack of coping skills, or
◦ believe that it is not appropriate to report such issues to
their clinician.
 Depression may be perceived somatically as fatigue
or chronic pain

Delirium
• Prevalence:
• 20% to 30% of people with cancer, COPD
and end-stage liver disease in SUPPORT
• 26% to 44% in terminal cancer
• 83% in people during their final days.
• Assessment:
• Confusion Assessment Method (CAM)
• Memorial Delirium Assessment Scale
(MDAS)
• Treatment in the terminally ill is difficult
• Prevention is key

Delirium: Treatment
• Drugs are the most common cause of
delirium
• reduction and possibly withdrawal of
anticholinergic and psychoactive drugs
• opioid dose reduction and/or rotation
(usually at an equianalgesic dose with a
reduction of 20% to 30%)
• Newer antipsychotics no better than
haloperidol

What Do Patients with Serious
Illnesses Want?
• Pain and symptom control
• Avoid inappropriate prolongation of
the dying process
• Achieve a sense of control
• Relieve burdens on family
• Strengthen relationships with loved
ones
Singer et al. JAMA 1999;281(2):163-168.

Advance Care Planning
 Recent ACP Guidelines:
◦ Clinicians should ensure that advance
care planning, including completion of
advance directives, occurs for all patients
with serious illness (strong
recommendation, low quality of evidence)

My Philosophy on ACP
(the other ACP)
 Goal is understanding/documenting
patient goals of care
 Care Planning is:
◦ A team effort
◦ An ongoing conversation
◦ Best initiated as an outpatient
◦ Requires time, communication,
documentation
 Patient/family must understand
 Diagnosis, prognosis
 Risks and Benefits of Available interventions
 Possible Outcomes

Conveying Prognosis
• Most want accurate and detailed prognostic
information BUT
– SUPPORT study around 1 in 5 would rather not
discuss end-of-life options.
• Most prefer physician to raise the subject
• Many preferred physician to ask first
– if they wished to know their prognosis
– in what detail
• In some other cultures (e.g., Asian, Navajo,
African, Central and South American and Eastern
European cultures), nondisclosure of bad news
or use of nonverbal means is expected.
– Assumptions based on ethnic background can be
misleading – better to ask.

The Collusion of Hope
 Providers fear relaying honest prognosis for
fear of destroying hope
 98% wanted doctor to be realistic.
 Hope giving behaviors:
◦ offering the most up to date treatment (90%)
◦ appearing to know all there is to know about the
patients cancer (87%)
◦ saying that the pain will be controlled (87%).
 Hope depleting behaviors:
◦ being nervous/uncomfortable (91%)
◦ giving prognosis to the family first (87%)
◦ using euphemisms (82%)
Hagerty et al. JCO 2006; 23(6): 1278-1288

Expectations regarding
Treatment:
CPR
 TV Shows = #1 Source of Info for older
adults regarding CPR
 Older adults overestimate CPR success by
 200%
 CPR Success on Television (NEJM):
◦ ER, Chicago Hope, Rescue 911
 75% survived Immediate Arrest
 67% appeared to survive to D/C
 83% = Young Adults
 Outcomes = ALWAYS either Full Recovery or Death

Survival After Inpatient Cardiac Arrest
 Bedell, et al. prospectively studied 294 patients
resuscitated at Beth Israel Hospital 1981-1982
◦ 160 men, 134 women, age 18-101, mean 70
◦ 128 (44%) survived the arrest, and 41 (32% of survivors) lived
until discharge
 renal failure (3% of 75 patients survived, none on
hemodialysis)
 cancer (7% of 59 survived, none with metastases)
 pneumonia (0% of 58 survived)
 none of the 42 patients with sepsis and none of the 16
patients with CVA survived to discharge
 homebound before hospitalization (4% of 137 homebound
survived)
◦ Age was not a significant predictors
Slide couresty of Déon Cox Hayley, DO and Don Scott, MD, MHS University of Chicago
Part of the CHAMP curriculum, supported by the Donald W. Reynolds Foundation

Mental Health, Treatment Preferences, and
Advance Care Planning
 EOL discussions not associated with
patients feeling “depressed, sad, terrified,
worried” or meeting DSM criteria for
mental disorder
 Patients participating in EOL discussions
more likely (p<=0.001) to:
◦ Accept that illness is terminal (52.9% vs.
28.7%)
◦ Prefer medical treatment focused on relieving
pain/discomfort over life-extending therapies
(85.4% vs. 70%)
◦ Have completed a DNR order (63% vs. 28.5%)
Wright, A. A. et al. JAMA 2008;300:1665-1673.
Slide courtesy of Holly Prigerson, Ph.D.

Medical Care at the End of
Life
 Even after controlling for desire for
prognostic information, TIA, and
treatment preferences, patients who
reported having EOL conversations with
their physicians at baseline received
significantly fewer aggressive medical
interventions near death
Wright, A. A. et al. JAMA 2008;300:1665-1673

Copyright restrictions may apply.
Wright, A. A. et al. JAMA 2008;300:1665-1673.
Medical Care Received in the Last Week of Life by End-of-Life Discussion

Patients’ Quality of Life at End-
of-Life
 Quality of life decreased with number of
aggressive interventions
◦ No aggressive care: mean QOL score 6.4
◦ 3+ aggressive measures: mean QOL score 4.6
 Quality of life improved with length of time
on hospice
◦ No hospice: mean QOL score 5.6
◦ One week of hospice: mean QOL score 5.6
◦ 2 months or more of hospice: mean QOL
score 6.9 (P=.01)

Cost Savings with ACP: Insights
from Coping with Cancer
 188/603 pt (31.2%) reported EOL
discussions
 Cost of care in last week of life
(+) EOL discussion: $1876
(-) EOL discussion: $2917
 a cost difference of $1041 (35.7%
lower among patients who reported
EOL discussions) (P =.002).
Arch Intern Med. 2009 Mar 9;169(5):480-8.

How to Increase use of Advance
Directives
• There is moderate-quality evidence
that:
–Multifaceted interventions increase
completion of advance directives and the
likelihood of adherence to patient
preferences
–Providing a trained facilitator increases
decisional competence
–Forms designed for those with low literacy
increase completion rates
–Peer mentoring increases advance

Bereavement Outcomes
 Caregivers of patients who received any aggressive
care were at higher risk for:
• developing MDD (adj OR=3.37, 95% CI, 1.12-10.13)
• Experiencing regret
• Feeling unprepared for patient’s death
• Worse overall QOL, self-reported health, and role
limitations
• High patient QOL assoc with better caregiver
outcomes:
• Overall QOL
• Self-reported health
• Physical functioning
• Mental health
• Also felt better prepared for the patient’s death, less
regret

What Do Family Caregivers Want
Study of 475 family members 1-2 years after
bereavement
• Loved one’s wishes honored
• Inclusion in decision processes
• Support/assistance at home
• Practical help (transportation, medicines,
equipment)
• Personal care needs (bathing, feeding, toileting)
• Honest information
• 24/7 access
• To be listened to
• Privacy
• To be remembered and contacted after the death
Tolle et al. Oregon report card.1999 www.ohsu.edu/ethics

Sharing Prognostic
Information Most families want to know prognostic
information*
 Most families also doubt prognostic
information
◦ 57.4% of public believe divine intervention
can save a person when physicians believe
treatment is futile**
 56% of family members wanted a physician
recommendation about WLST but 42% did
not***
*Apatira et al. Ann Intern Med 2008; 149:861-868
**Jacobs et al. Jacobs LM et al. Arch Surg 2008; 143:730-735
***White et al. Am J Respir Crit Care Med 2009; 180:320-325

Family Caregivers and the
SUPPORT study
Patient needed large amount of family
caregiving: 34%
Lost most family savings:
31%
Lost major source of income: 29%
Major life change in family:
20%
Other family illness from stress:
12%
At least one of the above: 55%
JAMA 1995;272:1839

Key Points
 Ask about pain, assess, and treat
using the WHO pain ladder – it works!
 Patients with life limiting illness have
many symptoms – assess
aggressively
 A simple conversation about EOL
wishes is an excellent start to helping
achieve your patient’s goals

Breaking Bad News
 The manner in which this is done have long
term implications for patient and family
◦ Caring attitude of the news giver
◦ Clarity of message
◦ Opportunity to ask questions
 Find a good setting
 Find the time
 Make sure the key players are there
◦ Parents
◦ Significant others

Breaking Bad News
 Tell the truth – gently, but honestly.
 Make yourself say the words you try to
avoid: cancer, dying
 Tolerate the response in silence
 Convey hope –
◦ Continued care and support
◦ Symptom management
◦ “We are in this together.”
 Plan for follow-up

Pronouncement of Death
 “A person is dead when, according to
ordinary standards of medical
practice, there is irreversible cessation
of the person’s spontaneous
respiratory and circulatory functions.”
 Texas health and safety code, title 8, chapter 671,
subchapter A, section 671.001a.

Pronouncement Procedure
Family Absent
 Find out from chart, nursing staff who key
family members are
 Identify yourself, ask to speak to person
closest to patient
 What does speaker know about patient’s
condition?
 “I’m afraid I have some bad news”
 Convey clearly, “I’m sorry to have to tell you
that ____ has just died.”

Step 2: Meeting the Family
Enter
 Quiet, respectful attitude
 Ask nurse to accompany for introductions
Introduce
 “I am the doctor on call”
 Determine relationships of persons present
 Inform family of purpose, invite to remain
 Offer to answer questions or to contact
others

Condolences
Empathize Simply
 “I am sorry for your loss…”
 “This is a difficult time”
Avoid
 “I know how you feel”

Family Response
 Families appreciate and respond to a
respectful and kind approach to this
final medical act
 Strong emotions are often expressed
– do not be driven away by this
 Active listening, patience
 Let the chaplain help you

Step 3: Clinical Examination
 ID bracelet and pulse
 Pupils for position and response to light
 Response to tactile stimuli
- Examine respectfully
- NO STERNAL RUBS OR NIPPLE PINCHES
 Spontaneous respiration
 Heart sound and pulses
 Record the time of death

Step 4:Death Note in Chart
 Date and time
 Name of provider pronouncing death
 Note absence of pulse, respiration, pupil
response
 Note if family present or informed
 Note family response if indicated
 Note notification of attending, pastoral care,
social work, or others as appropriate

Step 5: Notification of M.E.
 Review list of circumstances on back of
form
◦ Less than 24 hours in hospital
◦ Suspicion of foul play
 If patient meets any of the criteria, call M.E.
 Often, they will give you a “no case” number
 If autopsy is required by law, all devices
must be left in place (ET tubes, central
lines, etc)

Summary
 Sick people die sometimes
 The Palliative Care team is here to help you with
the care of terminally ill patients:
◦ Pain and Symptom management
◦ Discussion of Goals of Care
◦ Out-patient follow-up and Caregiver Support
 Death is as much a part of life as birth
 If you avoid and fear it, you cannot take good
care of your patients.
 It is normal to be freaked out by this stuff – talk
with your colleagues about it!

The Nature of Suffering and the
Goals of Medicine
The relief of suffering and the cure of
disease must be seen as twin obligations of
a medical profession that is truly dedicated
to the care of the sick. Physicians’ failure to
understand the nature of suffering can
result in medical intervention that (though
technically adequate) not only fails to
relieve suffering but becomes a source of
suffering itself.
Cassell, Eric NEJM
1982;306:639-

Opioids for Step 3 (Severe) Pain.
Abrahm J L , Ann Intern Med 1999;131:37-46

Management guidelines for severe cancer pain.4.

Opioid Failure
• Occurs in 10% to 30% of patients
• No predictive factors
• May improve with opioid rotation is
variable and unpredictable
• Opioid rotation is always an indication
for consultation

Coanalgesics
• Acetaminophen
• Contraindicated in patients with liver disease
• 4 g/day is the dose limit (2-3g/d in elderly)
• NSAIDs
• increase the risk of renal failure and GI bleeding
• risky in the elderly
• Opioid sparing effect when used in combination
• cyclooxygenase-2 (COX-2) inhibitors
• Analgesics may be combined with:
• tricyclic antidepressants
• anticonvulsants
• bisphosphonates for specific pain syndromes
• Corticosteroids (low quality evidence)

Opioid Pearls
• Hydromorphone (extended or immediate release):
• 5 to 10 times more potent than oral morphine
• Oxycodone:
• 1.5 to 2 times more potent than oral morphine
• Fentanyl (a lipid-soluble synthetic opioid):
• 50 to 100 times more potent than oral morphine
• transdermal delivery for up to 72 hours
• similarly effective in equivalent dosing
• lower risk of constipation and daytime drowsiness
• Stable serum levels achieved only after 12 to 24 hours
• inflexible dosing with patch
• not recommended in opioid-naïve patients or those whose dose requirement
has not stabilized
• Methadone:
• complex pharmacokinetics and long half-life
• Requires regular monitoring
• administered in consultation with experienced physicians only

Opioid Rotation
 A systematic review found that opioid
rotation resulted in clinical
improvement in over 50% of patients
with chronic pain and poor response
to one

Non-Drug Treatments for Pain
• Proven effective: Cognitive Behavioral Therapy
• Insufficient evidence to support any of the CAM treatments
• Use of CAM modalities very common
• 90/102 (88%) of CA patients enrolling in a phase I trial used at least one
CAM modality
• 93% used pharmacologic
• Vitamins E and C, mineral preparations (71%)
• Green tea (30%)
• Echinacea (13%)
• Essiac (10%)
• 53% used non-pharmacologic
• Prayer and spiritual practices (52%)
• 47% used both
• Used more frequently by women (54% vs. 40% in men), younger
patients, worse stated prognosis, poorer quality of life
• No effect on survival.
• The majority of patients are reluctant to disclose their use of CAM to
their physician

Treatment of Dyspnea:
Oxygen
• Improved symptoms during exercise in
COPD
• BUT weak evidence for symptom relief
in:
• COPD at rest
• heart failure
• cancer
• Even in hypoxic cancer patients:
• oxygen and air can improve dyspnea
• Fan may be just as effective

Opioids
 High-quality evidence of a benefit from opioid
use in COPD
• Poor-quality evidence of benefit in cancer
• Subsequent RCTs in COPD and advanced
cancer:
• benefit from oral morphine for
• improved subjective dyspnea
• Improved sleep,
• No compromise of respiratory function.
• Side effects: constipation, nausea and
vomiting.
• Theoretical effect of respiratory depression
not supported by the literature.

Anxiolytics
• Data lacking, urgently needed
• Low-dose phenothiazines,
benzodiazepines widely used
• A small RCT of terminally ill cancer
pts:
• SQ midazolam might be a safe and
effective adjunct to morphine
• Combine with nonpharmaceutical
interventions.

Non-Drug Strategies
 There is a paucity of evidence for
most interventions
◦ high-quality evidence from a meta-
analysis of 20 RCTs showing a benefit
from pulmonary rehabilitation in advanced
COPD
• Poor quality evidence/mixed results
for acupuncture

End of Life in the ICU
 10-20% of all ICU patients die
 Often illnesses are unanticipated –
little previous discussion of illness with
family
 Prognostication variable
◦ May not be useful anyway (SUPPORT)
 Culture of aggressive treatment
 Patients not generally able to
participate
◦ May seem dehumanized by

Psychological Symptoms
 Psychological distress
◦ anxiety, depression, worry, fear, sadness,
hopelessness, etc
◦ 40% worry about “being a burden”
◦ fear of the unknown –
 learn about death from television and movies
 loved ones no longer die at home
 in hospital deaths not always optimally
managed
Portnoy RK et al. Qual Life Res. 1994 Jun;3(3):183-9.

Sleep Disturbances
• 30% to 50% of cancer patients (2x
general population)
• Not much data available, but
improvement with massage,
aromatherapy, and CBT.

Antiemetics: Practical Guide to Prescribing

Pain Data from SUPPORT
% of 5176 patients reporting moderate to
severe pain between days 8-12 of
hospitalization:
colon cancer 60%
liver failure 60%
lung cancer 57%
MOSF + cancer 53%
MOSF + sepsis 52%
COPD 44%
CHF 43%
Desbiens & Wu. JAGS 2000;48:S183-186.

Opioid Side Effects:
Common and/or Transient
• Nausea and vomiting
• Anti-emetics effective for treatment, usually < 7 days
• Drowsiness – usually transient, may be related to sleep debt
• Cognitive impairment
• Minimal in most patients on stable dose
• driving not significantly impaired in alert patients on stable dose
• Pruritus – histamine mediated
• Constipation
• Very common (in up to 90% of patients) and persistent effect
• therapy with softening and stimulating laxatives
• Bulk laxatives risky if insufficient liquid intake
• Dry mouth
• Common.
• Good mouth hygiene, regular sips of water and sugar-free chewing
gum Brunnhuber, K., Nash, S., Meier, D.E., et al (2008)

Opioid Side Effects:
Uncommon
• Delirium
• May respond to opioid rotation
• Urinary retention:
• Uncommon; may occur with spinal opioids
• Respiratory depression
• dose, drug and route dependent
• rapid IV infusion or rapid dose escalation of methadone
• other risk factors include renal failure, limited pulmonary reserve,
and concomitant use of sedating drugs such as benzodiazepines
• The Principle of Secondary Effect

Alternate Routes of
Administration
• Subcutaneous (requires dose conversion)
• Rectal/vaginal (does not require dose conversion)
• Transmucosal fentanyl citrate:
• More effective than placebo or morphine IR for reducing breakthrough pain
intensity.
• Transdermal fentanyl:
• noninvasive alternative for opioid-tolerant patients who require stable doses
• Variable absorption
• Lipophilic
• Adhesive issues
• Can also be given centrally
• intracerebroventricular (ICV)
• epidural (EPI)
• or subarachnoid (SA) routes
• Intramuscular opioid injections are not recommended

Prevention of Delirium
 Cognition: orientation board (carry pen!), (day)
open drapes, clock, calendar, family photos
 Sleep: min deprivation (d/c 2am labs & o/n
BD/vitals; meds when awake); warm drink; limited
pm awake
 Mobility: Early OOBchair ; PT/OT; no
foley/restraints
 Vision: glasses
 HOH: get aids; adapt environment (stethoscope!)
 Dehydration: po fluids; observe at mealtime
 Feeding: assist with meals
 Activity: Involve family (rotate members) or get
sitter; move pt to room close to RN station, current
events
Inouye, SK. JAGS 2006; 54: 1492-1499
This slide courtesy of Shellie Williams, MD
Prepared as part of the CHAMP curriculum
Funded by Reynolds Foundation
http://champ.bsd.uchicago.edu/

Delirium: Indications for Medical
Management
 Patients pose a danger to themselves
or others
 Uncontrollable agitation despite
nonpharmacologic interventions
 Anxiety in the presence of agitation or
hallucinations
 Need to control agitation during a
diagnostic or clinical intervention

Delirium: Medical
Management
• Newer antipsychotics no better than
haloperidol
• In pt with dementia, olanzapine,
risperidone increase risk
• sudden death
• nonfatal cerebrovascular events
• When using antipsychotics, monitor
QT interval if consistent with patient’s
goals of care

Constipation
• Opioids acts on peripheral opioid
receptors in the GI tract, causing
constipation
• The prevalence ranges from 15% to
90%
• 23% in pt following WHO guidelines for
cancer pain management
• 40-63% of hospice patients
• Prophylaxis (e.g., with senna plus
docusate) is recommended in all
people starting opioid treatment

Medical Management of
Constipation
• Oral laxatives
• Senna as effective as lactulose, Misrakasneham
• No good evidence to support docusate
• Lactulose more effective than placebo, may be as effective
as golytely, though obstruction/Ogilvie syndrome more
common with lactulose
• Inadequate data to recommend bisacodyl, sodium
picosulfate, isapaghula husk, (psyllium), methylcellulose or
magnesium salts
• Rectally applied medications
• Insufficient data to recommend phosphate enemas, liquid
paraffin, glycerol suppositories, sodium citrate, micro-
enemas, and arachis oil enemas

Medical Management of
Constipation, cont’d
• Opioid antagonists
• block GI opioid receptors
• drawback of their use is the difficulty of retaining the central
beneficial effects while preventing constipation
• SQ methylnaltrexone (MNTX) vs placebo in
hospice/palliative care pt
• increased the rate of bowel movements within 4 hours
• No interference with central analgesia.
• Subcutaneous methylnaltrexone bromide has just
gained FDA approval
• Also proven efficacy of alvimopan, but not approved in
the U.S. for opioid induced constipation.
• Insufficient evidence to recommend oral naloxone

Dehydration
 Multifactorial
• Treat reversible causes (delirium, opioid toxicity)
• Further treatment based on discussion about goals of care
• May not cause suffering in the terminal phases as long as oral hygiene maintained
• Perception of thirst associated with hyperosmolality (300 mosmol/kg or more),
poor general condition, stomatitis, oral breathing, and use of opioids.
 Medically assisted hydration an area of controversy.
 Routes of medically assisted hydration:
◦ IV
◦ SubQ (hypodermoclysis)
◦ Via gastrostomy
◦ intravenously, subcutanously (hypodermoclysis) or via gastrostomy, remains a much
debated issue among palliative care physicians.
 Insufficient evidence to clarity effects of short-term hydration in terminal cancer
◦ weak evidence that it might improve sedation and myoclonus
◦ no beneficial affect on other outcomes
◦ increased fluid retention (e.g., pleural effusion, peripheral edema and ascites)

Cancer Pain Management
• Best practice :
• Right analgesic, right dose, right time
• Most appropriate route (preferably oral)
• Maximize dose of one agent before
moving to another
• Considering coanalgesics
• Managing adverse effects
• One clinician steering the ship

Pain Management
 Recent ACP clinical guidelines found
sufficient evidence to recommend:
◦ NSAIDs
◦ Opioids
◦ Bisphosphonates
◦ XRT
◦ Radiopharmaceuticals

Discomfort Ratings For 16 Common Hospital
Procedures For 165 Subjects
Severe
 Nasogastric tube
 Mechanical ventilation
 Mechanical restraints
 Central line placement
Moderate
 Arterial blood gas
 Urethral catheter
Mild
 IV insertion
 Phlebotomy
 IV catheter
 IM/SC injection
 Waiting for procedures
 Movement from bed to chair
 Chest X-ray
None
 Transfer to a procedure
 Vitals signs
 PO medications
Morrison et al, JPSM 1998
Slide courtesy of Sean Morrison, M.D.

Dyspnea

Nutrition Issues
 Nutritional support is overused in general
◦ Use can be reduced via education
◦ guideline implementation
◦ shared decision making
 Gastrostomy tube feedings
◦ no evidence of improved outcomes in advanced dementia
◦ Use still as high as 90% in some states among patients
◦ Perceived by many patients as undesirable, but decision
often made after incapacity
 15% of patients had feeding tubes placed despite a
recorded preference against them.
◦ Physician education + palliative care consultation halved
feeding tube placement rates

Physician Communication
• Good communication requires:
– preparing for the encounter
– creating a supportive environment
– active listening
– appropriate awareness of nonverbal behavior
– expressing empathy
• Clinician’s should be open to exploring emotion and meaning
• Evaluate the patient and family’s:
– knowledge of the current situation
– desire to learn new information about prognosis and what the future holds
– communicate in a manner appropriate to their culture and education.
• Bad news may be followed by acceptance or denial
– appropriate strategies for both situations should be prepared
• There is moderate-quality evidence that:
– Intensive education improves clinician communication skills
– Provision of prompt cards to patients improves communication.

Advance Care Planning:
Opportunities
 Goal is ongoing, collaborative discussion of patient goals with
systems in place that ensure the wishes of the patient are actually
honored
 Should be a part of routine care
 Patients should feel their values are important for decision making.
 Completion of advance directives is a process and there is a higher
likelihood with repeated contact.
 The well-equipped office should include
◦ state-approved advance directive forms
◦ checklist in the patient chart to ensure that it is filled out
 A team approach involving other qualified health professionals is
recommended
 The goal should be genuine understanding, not just completing a
document
 Once completed, they need to be revisited regularly as patients’
preferences have been shown to change over time.
◦ Plans should be revisited at diagnosis
◦ following frequent hospitalizations
◦ on declining functional status.
 All stakeholders need to be aware of and involved in the plan.

Advance Care Planning:
Success
 Physician Orders for Life-Sustaining Treatment (POLST) form and
program
 Physician Orders for Scope of Treatment (POST)
 Medical Orders for Life-Sustaining Treatment (MOLST).
 Information about the program and sites across the U.S. are
available at http://www.ohsu.edu/polst/professionals.shtml.
 Key elements include:
◦ a protocol outlining policies and procedures for transferring information
about preferences across health care settings
◦ distinctive and prominently displayed form that details specific wishes on
medical interventions
◦ education of all those involved (patients, families, and health care
professionals)
◦ revision of the template forms based on feedback and a system to monitor
distribution of forms, education and quality improvement.

DNR Orders
 The self-reported prevalence of DNR policies in U.S. nursing homes has risen
substantially
 DNR orders are frequently misunderstood, rarely discussed, and poorly
implemented
 Patients may overestimate the prognosis following in-hospital resuscitation
◦ most surveys reporting that less than 15% of people survive to discharge.
 Many residents misinterpreted the terms “DNR” and “futility”.
 The SUPPORT study included patients with life expectancy less than 6 months
and reported that:
◦ only 47% of physicians knew their patients’ CPR preferences
◦ 46% of DNR orders were written within the last 2 days before death
◦ 38% of these patients had spent more than 10 days in an ICU, on a ventilator, or in coma
before dying.

Patient/Family Wishes for ICU
 Timely, clear, and compassionate
communication by clinicians
 Clinical decision-making focused on
patients' preferences, goals, and values
 Patient care maintaining comfort, dignity,
and personhood
 Family care with open access and
proximity to patients, interdisciplinary
support in the intensive care unit, and
bereavement care for families of patients
who died.
Crit Care Med. 2010 Mar;38(3):808-18

Pain Ratings For 16 Common Hospital Procedures For
165 Subjects
Severe
 Arterial blood gas
Moderate
 Central line placement
 Nasogastric tube
 Peripheral IV insertion
 Phlebotomy
Mild
 IM/SC injection
 Urethral catheter
 Mechanical restraints
 Movement from bed to chair
None
 IV catheter
 Chest x-ray
 Vitals signs
 Transfer to a procedure
 Waiting for a test or procedure
 PO medications
Morrison et al, JPSM 1998
Slide courtesy of Sean Morrison, M.D.

End of Life Care

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