Dr. Eli N. Root Distinguished Lectureship
Ethical Issues in Cancer Care:
from First Diagnosis…to the End-of-Life
St. Luke’s Grand Rounds
Monday October 29, 2012
Jeffrey Spike, Ph.D.
Samuel E. Karff Professor
McGovern Center for Humanities and Ethics
UTHealth (Houston)
jeffrey.p.spike@uth.tmc.edu
Conflicts of Interest
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None.
No one helped me write any of the content in
this presentation, neither I nor my family have
any investments in any product mentioned, nor
do I suggest off-label uses of any medications.
Objectives
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Review some pearls on breaking bad news
and informed consent
Improve timing of when to refer patients to
palliative care or hospice
Clarify the reasons for withholding and
withdrawing feeding tubes and other LSMT
Informed Consent Warning Signs
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If all of your patients agree with you, you may be
giving biased information
Sometimes a refusal can be a sign of success
If you let others get your consents, they may not
be as thorough as they should
Even if telling more won’t change the decision,
some information could still be helpful to the
patient to plan their life better (e.g. visit a loved
one before having surgery or starting chemo)
Patients Who Make ‘Bad Decisions’:
Refusal of Beneficial Treatment
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Refusing treatment is always one of the options
for patients with capacity
The side-effects of tx may not be worth it
There are also some religious beliefs such as
Jehovah’s Witnesses and Christian Science that
influence medical decisions
Asymmetry: patients cannot make you do
something that is not indicated, but they can
stop you from doing something that is
Bad News Telling: The Six Step Approach
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Step 1. Getting started (quiet, private, protected)
Step 2. Find out how much the patient knows
Step 3. Find out how much the patient wants to
know
Step 4. Sharing the news empathically
Step 5. Responding to the patient’s feelings
Step 6. Planning and follow-up
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From: Buckman, R. How to Break Bad News. Baltimore, 1992;
Johns Hopkins University Press
Education for Physicians on End-of-Life Care; 1999;AMA
Step 3: Determine how much the patient
wants to know
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Example questions
 Some people prefer that I go into great
detail, while others prefer that I just present
the big picture. What would you prefer?
 Is there someone else you’d like to have
with you when we talk about your treatment
choices? Or someone you prefer I talk to
instead of with you?
Step 4: Sharing the news empathically
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Examples
 “The test results are not what we hoped for Mr.
Smith, they indicate that you have colon cancer. I
wish things were different.” (STOP)
 “I’m afraid I have bad news, Mrs. Smith. The
biopsy shows that the lump in your breast is
cancerous.” (STOP)
 “Mrs. Jones, I’m sorry to have to tell you this, but
your cancer has returned and the tumor has grown.”
(STOP)
Step 5: Responding to the patients
feelings and reactions
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Be prepared for a range of responses
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Affective—anger, sadness, grief, etc.
Cognitive defenses—denial, blame (displacement),
intellectualization, etc.
Flight-fight response (can’t hear you: their own
heartbeat can drown out your voice)
If you don’t understand the patient’s response, ask
them for clarification.
Respect the patient’s feelings. Don’t try to
“rescue” the patient from strong emotions.
Step 5: Responding to the patients
feelings and reactions
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PEARLS skills—especially:
 Partnership– “This is something we’ll tackle
together.”
 Empathy– “I can see you’re frightened”
 Legitimization– “Anyone would be scared by
this news.”
 Support– “I’ll be sure to follow-up with Dr.
Miller about his plan so I can answer any
questions you might have.”
Step 5: Responding to the patients
feelings and reactions
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Don’t rush the patient
Follow the patient’s lead in deciding when to
move on (don’t intrude on their reaction)
Listening shows more empathy than talking
(“Knowledge speaks but wisdom listens”)
Studies show most docs only wait 18 seconds
before ‘redirecting,’ and most patients would
only talk 45 seconds if not interrupted!
Step 5: Responding to the patients
feelings and reactions
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While seeing the cup as half full, and
encouraging them having something to look
forward to is good, don’t encourage denial
If you do, then patient may feel mislead later
“Don't wish me happiness--I don't expect to be
happy, it's gotten beyond that, somehow. Wish
me courage and strength and a sense of humor-I will need them all.” ~Anne Morrow Lindbergh
“How much time do I have?” Discussing prognosis
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Avoid giving too precise a time frame
Provide reasonable range (e.g. less than six months,
or 6 mo-2 yrs)
Provide realistic reassurance and hopefulness
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I will keep you informed
I will be available and supportive
We will do everything we can to make you as
comfortable as possible
We will explore all treatment options
You may benefit psychologically, and perhaps even
live longer, with group therapy and palliative care
Step 6: Planning and follow-through
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Before they leave office, make follow-up
appointment
Strongly encourage them to join a support
group…
Fellow-travelers can say things you can’t, and
know things you don’t…
Evidence is it can even increase survival
Step 6: Planning and follow-through
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Later in the disease process, if it appears the
prognosis is terminal… the goal is still to help
patient live well in whatever time is left.
All patients die eventually, so caring for the
dying is essential part of being a doctor.
And while no one wants to die, many people do
achieve important things during this period.
Having a realistic deadline can help them find
purpose and set goals.
Common Reasons for Requests for Futile
Treatment worth a frank discussion
Slide 1 of 2
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Denial: Family can’t admit a terrible truth, that there’s
nothing left to do that’s worth doing
Guilt: Family fears not doing all they can for loved
one
Responsibility: Family feels they caused/contributed
to the illness or injury
Love: Family not prepared to lose him/her
Socioeconomic: Poor/minority family doesn’t trust
doctor’s diagnosis or prognosis (and often fear undertreatment/rationing from discrimination)
Common Reasons for Futile Treatment
under your control
Slide 2 of 2
6.
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Denial: Doctor can’t admit there’s nothing he/she can
do that’s worth doing
Guilt: Doctor fears not doing all he/she can for patient
Responsibility: Doctor feels he/she caused/contributed
to the illness or injury
Love: Doctor’s identification with an educated or wellto-do patient causes over-treatment
Socioeconomic: Wealthy patient/family has sense of
entitlement for anything money can buy (and w/ feefor-service, this creates a conflict of interest)
Doctors too Can Make ‘Bad Decisions’
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Be reflective about your own values. Many
physicians put more trust in medical treatment
than it deserves; it may be a professional
hazard.
Keep in mind that most Americans think
doctors over treat patients at the end of life
Physicians’ denial can contribute to patients
dying ‘bad deaths’ in hospitals instead of
‘peaceful deaths’ at home.
When to refer to palliative care or
hospice
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Average hospice patient gets two days to two weeks
of hospice, when 6 months is paid for
Studies show one reason is physicians cannot predict
death accurately until two days before, so…
Trying to predict death may harm your patients
Better: ask yourself if you would be SURPRISED if
this patient died within the next 12 months. If not,
then it’s time to bring up possibility of hospice or
palliative care, and recommend one or the other.
Hospice is helpful for patients and their families
Can patients enter hospice too soon?
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After six months, the hospice won’t kill them!
Some studies indicate hospice lengthens
lifespan
If patient improves enough, they will be
considered “graduates”
If patient still needs hospice, they can get a
second six months
So answer is “No” patient cannot enter hospice
too soon (no harm can result from it)
Palliative Care
Cure
Hospice
H
Cure
Palliate
What can a physician group offer as an incentive to
patients over a pure fee for service specialist model?
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A promise of lifelong follow-up, and assurance
of non-abandonment
Can include visits even if patient enters hospice
Can include a condolence letter to the family
and perhaps attending the funeral
These can have an enormous positive impact,
and be viewed as very valuable
Common Concerns
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Legally required to “do everything”?
Is withholding treatment euthanasia?
Are you killing the patient when you remove
a ventilator, or feeding tube?
If I try hard to relieve symptoms (e.g. pain, or
shortness of breath) and the person dies, is
that euthanasia?
Withholding vs. Withdrawing Treatment
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Withhold = do not start treatment
Withdraw = stop treatments that aren’t
achieving your goals
There is no ethical or legal difference
But - they feel different emotionally
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One religious group distinguishes between them
Risk of treating them differently: failure to
give potentially beneficial interventions a trial
Ethical Principles
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Autonomy:
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Beneficence and Nonmaleficence:
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The ‘gold standard’ is called “substituted
judgment”: ask what would she tell us to do if she
awoke and knew she only had 15 lucid minutes?
Do the benefits outweigh the burdens of treatment?
The “Best Interest” standard
Remember we never “withdraw care.” We
withdraw some invasive or toxic treatments
because we care.
Some Pearls from Palliative Care
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Start with large bolus for pain, to get control, then can
titrate down. Don’t start low and try to increase slowly.
All patients should have a DNR order in the chart
before they die; there’s no harm in it being there a
week. Do not try to time it, or you risk doing it too late.
Hospice adds valuable services such as psychological
help for the patient and for the family.
Malnutrition is natural analgesic and euphoric before it
lowers the entire sensorium—a good, natural death
d/c IV hydration when you d/c artificial nutrition
The Right to Refuse Treatment
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Patients have the right to refuse treatment
Does not depend on their condition being
“terminal”
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Though is often one of the ‘trigger’ conditions
chosen for when a living will goes into effect
Informed consent: we cannot treat without
permission
Anything a patient can consent to, they can
refuse
So they can refuse any life-sustaining tx
Life-Sustaining Medical Treatments
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Resuscitation (CPR)
Tracheal intubation
Surgery
Dialysis
Blood transfusions,
blood products
Steroids
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Artificial nutrition
and hydration
Antibiotics
Pressors
Future hospital or
ICU admissions
Pacemakers and
defibrilators
Include DNR discussion with
Advance Directives
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This involves patient, introduces shared decision-making paradigm,
preferable to seeing DNR as a doctor’s order (unilateral)
30%-40% of persons over 70 years old don’t want CPR even if the
possibility of survival is good
Survival rate <7% for patients with cancer
Successful resuscitation should mean not just restoration of pulse and
breathing or discharge from ICU; but discharge from hospital.
Physiological outcomes (of “successful” resuscitations): Brain damage
– 2%, Rib fractures – 33%, Lacerated spleen or liver – 5%
Psychological outcomes: Major depression - >50%, Survivor
expresses he or she would not want CPR again - >50%
--Schneider AP, et al. “In-hospital cardiopulmonary resuscitation:
A 30-year review.” J Am Board of Fam Pract 1993; 6:91-101
Myths About ANH
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Prolongs life
Reduces suffering
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Never say “Starvation” (and correct others
who say it)
Decreases aspiration and other
complications
It’s “Ordinary” care (not medical care) or
else “Medically Necessary” care
Normal Dying (Natural Death)
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Loss of appetite
Decreased oral fluid intake
Positive effects – analgesia & euphoria
Artificial nutrition and hydration may make
situation worse:
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Shortness of Breath (dyspnia)
Coughing/gurgling
Edema or ascites or third spacing
Nausea / vomiting / aspiration
Incontinence and UTI
Feeding tubes: Artificial Nutrition and
Hydration
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When a patient needs a PEG, it is also time to think
about prognosis, and whether to get a referral for
hospice and palliative care
Inability to swallow is as good a predictor of final
year of life as inability to walk (unless there’s a
reversible physical cause, like a recent stroke)
Remember almost all patients would prefer to die at
home, not in a hospital. That takes planning (and
deferring ‘the talk’ may make it impossible)
Never use the words “food” or “starvation”
ANH is a Medical Treatment
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It requires medical intervention, including an surgery
to place the tube (and informed consent)
It does not deliver food, but rather special mixed
formulas and medication
It has burdens (side effects) that may outweigh the
benefits, especially for those incapable of feeling
hunger or thirst
For many patients it doesn’t even extend life
Hospice: ‘It is better to die dry than to die wet’
Weissman’s triad and the death spiral
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The finding of a dying patient with a feeding tube, restraints and
pulse oximetry (‘Weissman's triad’)
Set goal: no patients die with Weissman’s triad
Reason: Placement of feeding tubes has an in-hospital mortality of
15-25%, and one year mortality of 60%. Predictors of early
mortality include: high age, CNS pathology (CVA, dementia),
cancer-except early stage Head/Neck cancer, disorientation, and
low albumin
Does ANH decrease risks? Nasogastric (NG) tube – 67% aspirated,
43% developed pneumonia, 66% pulled it out; Gastric (G) tube-44% aspirated, 56% developed pneumonia, 56% pulled it out
--Fast Facts and Concepts #85 . “Swallow studies, tube feeding and the death spiral.” Weissman, DE;
February 2003. End-of-Life Physician Education Resource Center www.eperc.mcw.edu.
What if Family is Conflicted?
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Often the family is certain the patient “wouldn’t
want to live this way” but cannot stop ANH for
emotional or religious reasons
Often there are differences of opinion between
family members
Sometimes there is a long history of discord that
comes out in this stressful period
Try to make everyone tell you what the patient
would have wanted (better chance of agreement)
Culture and Medicine: the Patient
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Each patient comes from a certain culture, and
one must be sensitive to the variations in
assumptions. It is up to the patient to decide
which cultural norms to live by.
The best way to discover this is by talking to
the patient, not the patient’s parents or adult
children. There can be very large differences
in cultural norms between first and second
generation Americans.
Culture and Medicine: the Doctor
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Everyone in this room is a member of two different
cultures
First, you are a member, probably slightly diluted, of
the culture your family belongs to
Second, you are a member of the medical culture
Neither of these is exactly neutral, neither is universal,
and neither is always rational
Medical education teaches us to be non-judgmental, so
able to overcome the biases of our familial culture
Sometimes we must overcome our medical culture too
Conclusions
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When in doubt or facing differences with
family or staff, first consider an open team
meeting, and listen to the nurses who spend
the most time with the patient and the family
Next, get a palliative care consult
Then, consider an ethics consult
More References
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Back AL, Arnold RM, Baile WF, Tulsky JA, Fryer-Edwards K.
Approaching difficult communication tasks in oncology. CA Cancer J Clin.
2005;55(3):164-77.
Back AL, Arnold R, Tulsky J. Mastering Communication with Seriously Ill
Patients: Balancing Honesty with Empathy and Hope. 2009: Cambridge
University Press.
Curtis JR, Engelberg RA, Wenrich MD, Shannon SE, Treece PD, Rubenfeld
GD. Missed opportunities during family conferences about end-of-life care
in the intensive care unit. Am J Respir Crit Care Med. 2005;171(8):844-9.
Halpern J. Empathy and patient-physician conflicts. J Gen Intern
Med. 2007;22(5):696-700.
Levinson W, Gorawara-Bhat R, Lamb J. A study of patient clues and
physician responses in primary care and surgical settings. JAMA.
2000;284(8):1021-7.