Palliative Care of Patients with Brain Tumors from Diagnosis to

Palliative Care of Patients with
Brain Tumors from
Diagnosis to Bereavement:
Redefining Competency
Alan Carver, MD
Attending Neurologist, Dept. of Neurology
Memorial Sloan Kettering Cancer Center
Associate Clinical Professor of Neurology
Weill Cornell Medical College
New York, NY
carvera@mskcc.org
Today’s Agenda
A bit of history
 Raising the bar for doctors and patients
 Palliative Care and Neurology: an
imperfect marriage
 MSKCC Study
 Living until we die
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History
Dame Cicely Saunders (1918-2005)
nurse, medical social worker, physician
founded St. Christopher’s Hospice in
Sydenham, London, UK in 1967
goal of relieving suffering of patients dying
with cancer
philosophy was to combine patient centered
care with advanced clinical techniques to
control complex symptoms Clark D. Mortality 1999;4(3):225.
The changing role of the physician
The end of the Giant
 The doctor as shift worker
 Declining income and prestige
 The patients “rights” ascendancy
 A new way to sell newspapers
 Dr. K, Oregon, and the undermining of care
of patients near the end of life.
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Kindness isn’t good enough
“We should not confuse compassion with
competence when caring for terminally ill
patients.” (Foley KM., NEJM., 1997)
SUPPORT STUDY
Study to Understand Prognoses and Preferences
for Outcomes and Risks of Treatment:
50% of physicians did not respect or were
unaware of their patients’ advance directives
Most DNR orders were written 24 hours before
death
50% of the patients had severe pain for several
days before death
Barriers to Better Care 2012
Lack of Education & Training MDs/RNs
 Patient fear of disease progression leads to
underreporting
 The culture of “cure” (don’t ask, don’t tell)
 Preauthorizations, roadblocks,
 Poor or no health care/prescription coverage
 Fear of DEA scrutiny, arrest, “witch hunts”
 Paucity of role models

Patient-Related Barriers
to Pain & Symptom Control
Prefer to focus on treatment
 Stoicism
 Desire to please the staff
 Fear that pain signals disease progression
 Fear of becoming addicted
 Fear of experiencing side-effects
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Drayer RA., et al., J Pain Symptom Manage 17:434-440, 1999
Physician
Barriers to Management
Our own sense of failure
“I don’t know what else to do.”
 “I should have been able to do more.”
 “What will my colleagues think of me if I
don’t keep fighting?”
 “My lab and/or clinical work is all about
finding a cure.”
 “They travelled so far for what I have to
offer. How can I let them down?”

Weissman, DE Decision Making at a Time of Crisis Near the End of Life JAMA
2004; 292:1738-1743
Medical Education Barriers
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Only three of 125 U.S. accredited medical schools
offer a required course in pain management or
palliative care
End of life care is largely absent from major medical
general and specialty textbooks
Lack of mature, knowledgeable role models with
expertise in palliative care & symptom control.
1. Billings & Block., JAMA 1997;278:733-738
2. Rabow et al., JAMA 2000;283:771-778
Bernat, et al., Neurology 1996; 46:589-599.
Classroom & Bedside:
What we teach is not necessarily
what our students observe
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Dr. Carver, this is the area of greatest
discrepancy between what I learn in the
classroom and what I see on the wards.
Graduating medical student
Weill Medical College of Cornell University
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Is pain a priority in training
neurologists?
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Random sample of 700 AAN Members trained
and practicing in the United States:
70% report they are not adequately trained to
diagnose, and 80% not adequately trained to treat
pain conditions.
89% agree that more pain education is needed for
resident training
Only 29% of accredited training programs have a
pain specialist on the faculty
Galer BS., Keran C., Frisinger M., Neurology 1999
Opioid Primer: Myth vs. Fact
Myth # 1: Opioids cause addiction.
Fact #1: The medical use of opioids according
to the available scientifically validated
guidelines does not cause psychological
dependence (I.e. addiction).
*Drayer et al. JPSM 1999;17:434-40
Opioid Primer: Myth vs. Fact
Myth #2: Opioids hasten death
Fact #2: Opioids have never been demonstrated to
hasten death and may prolong life
Wilson WC et al., JAMA 1992;267:949-953
Brescia FJ et al., J Clin Oncol 1992;10:149-155
Portenoy RK, J Pall Care 1996; 12:44-46
Bercovitch M et al., Cancer 1999
Sykes et al., Lancet 2000;356:398-399
Thinking neurologically about
palliative care
Definition:
The active total care of patients whose disease is not
responsive to curative treatment.
The World Health Organization 1990
Pearls:
1) There is very little in neurology that cures.
2) Knowing how to palliate is a matter of
competency in neurologic practice.
WHO Six Principles of Palliative Care –
Are we competent practitioners?
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1) Affirms life and regards dying as a normal
process
2) Neither hastens nor postpones death
3) Provides relief from pain and other distressing
symptoms
4) Integrates the psychological and spiritual aspects
of patient care
5) Offers a support system to live as actively as
possible until death
6) Offers a support system to help the family cope
during the patient’s illness and in their own
bereavement.
AAN Position Paper

Many patients with neurologic disease die
after long illnesses during which a
neurologist acts as the principal or
consulting physician. Therefore, it is
imperative that neurologists understand, and
learn to apply, the principles of palliative
medicine.
AAN Ethics and Humanities Subcommittee Neurology 1996;46:870-872.
AAN study (Carver, Foley, et al)
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Three groups of AAN members were
surveyed: neuro-oncologists (161), ALS
specialists (114), and a sample of general U.S.
neurologists (370) (69% response rate)
They were presented with scenarios involving
end of life care and asked questions as to their
knowledge of existing medical, ethical, and
legal guidelines, and their willingness to
participate in PAS and VE.
Results
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97% agree that a competent, terminally ill
patient has the right to refuse life-sustaining
treatment, even if he/she dies as a result.
However almost 1/3 believe they are killing
the patient when consenting to the refusal.
40% believe they should obtain legal counsel
when considering stopping life-sustaining
treatment
37% think it is illegal to administer analgesics
in doses that risk respiratory depression
As for PAS & VE…
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50% believe that PAS should be made
explicitly legal by statue for terminally ill
patients.
13% would participate in PAS under current
law, and 4% in VE, but if legalized, 44%
would participate in PAS and 28% in VE.
1/3 believe they have the same ethical duty to
honor a terminally ill patient’s request for PAS
as they do to honor a patient’s refusal for lifesustaining therapy.
Conclusions
There is a gap between established medical,
legal, and ethical guidelines for the care of
dying patients and the beliefs and practices
of many neurologists
 We need graduate and post graduate
education programs to close the gap
 At the end of life, you don’t want to be
cared for by a neurologist!
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Some neurologists respond!
Course in Palliative Care, AAN Annual
Meeting
 First Neurologic Clinics volume devoted to
Palliative Care, November 2001 (eds:
Carver, Foley)
 Voltz, et al., Palliative Care in Neurology,
Oxford Univ. Press, 2004
 Merrit’s Textbook of Neurology chapter on
End of Life Care, starting with 10th edition
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Neuro-oncology and the culture of
optimism: from diagnosis to far
advanced disease
Do we “hope for the best and plan for the
worst?”
 Or do we say, “I will never give up.”
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Data suggests that oncologists are more
optimistic than they know is warranted.
Barnes et al., Physician Expectations of treatment outcomes for patients
with brain metastases referred for whole brain radiotherapy In J. Rad
Oncol Bio Phys. 2010 Vol 76. No. 1 pp 187-193
At diagnosis, how is prognosis
communicated?
Shock
Trying to understand while still in shock
Perception of hope being taken away
Need for individualizing prognostic info
Clinicians’ lack of communication skills
E.A. Lobb et al., J Neurooncol 2011 104:315-322
Goals and Hope
(J Von Roenn, C von Gunten)
1.
2.
3.
4.
5.
6.
7.
Create the Right Setting
Ask What the Patient/Family Know
Explore What They Are Expecting or Hoping
For
Suggest Realistic Goals
Respond Empathically to Emotions that Will
Arise
Make a Plan and Follow Through
Review and Revise Goals Periodically
MND
GBM
CJD
MS
CIDP
DEMENTIA
Until recently….
Cognitive Dysfunction
 Seizures
 Immobility
 Pulmonary and venous thromboembolism
 Corticosteroid side effects (hyperglycemia,
insomnia, psychosis, muscle weakness
 Radiotherapy side effects: Acute, subacute
(within six months – demyelination), late
(necrosis, dementia)
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Brain Tumors & Symptom Control
Seizures in 40% of high-grade glioma patients
and 80% of low-grade patients
 20% have either DVT or PE
 Half of brain tumor patients have pain
(headache, elevated ICP, meningeal, or chemo
side effects)
 70% worry about the future
Hopelessness is the strongest predictor of
requests for physician-assisted suicide.
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Taillibert S. et al., Palliative care in patients with primary brain
tumors Curr Opin Oncol 16:587-592 2004
Taillibert et al 2004
common neurological symptoms
50% headache
40-80% seizures
79% cognitive deficit in min single domain
30% thromboembolic complications
severe fatigue
Talacchi et al. J Neurooncol. 2010; [Epub].
2005; 16:587-592.
17:588-592.
Taillibert et al. Curr Opin Oncol. 2004;
Survival in Glioblastoma
Unmarried patients have a larger tumor size at
diagnosis, are less likely to undergo
maximal treatment (surgical resection, RT,
chemo), and live for a shorter time.
Married patients with cancer live longer.
Depressed patients with gliomas (high or low
grade) have shorter survival times.
Message: Social Support Matters!
Brain Tumor Patients at End of Life
In the last four weeks (n=169):
30% seizures
36% headache
85% drowsiness
85% dysphagia
12% death rattle
15% agitation and delirium

Pace A., et al., End of life issues in brain tumor patients J
Neurooncology 91:39-43, 2009
MSKCC Retrospective Study: Identifying the
palliative care needs of patients living with primary
CNS tumors and brain metastases
530 patients admitted
770 admissions
168 patients satisfied
inclusion criteria
96 male
72 female
mean age = 60 +/- 14y
primary CNS tumour
(not PCNSL)
66%
PCNSL
20%
metastases
14%
Data Collection
Demographics
Treatments
EOL Discussions
-sex
-primary cancer
-age
-age at diagnosis
-duration of disease age at time of death
-location of death
-radiation and
chemotherapy
-evidence of
resuscitation at the end
of life
-evidence of cancer
directed therapy in the
last month of life
-health care proxy
-palliative care
consultation
-hospice discussion
-evidence of discussion
regarding EOL wishes
Symptoms
-falls, gait impairment
-incontinence
-spasticity, motor deficits
-sensory disturbance
-delirium
-cognitive/personality
change
-aphasia, dysarthria
-dysphagia
-seizures
-diplopia, visual changes
-delirium
-pain, headache
-depression or anxiety
WHO Brain Tumours
Grade I/II
Grade III/IV
-pilocytic astrocytoma
-oligodendroglioma
-astrocytoma
-ependymoma
-meningioma
-recurrent
ganglioglioma
-pleomorphic
xanthroastrocytoma
-glioblastoma
-anaplastic astrocytoma
-anaplastic
oligodendroglioma
-anaplastic meningioma
-gliomatosis cerebri
Primary CNS
lymphoma
-lymphoma originating
in the CNS
Cerebral metastasis
-B cell lymphoma
-breast cancer
-melanoma
-lung adenocarcinoma
-non small cell lung
cancer
-small cell lung cancer
-adenocarcinoma of
unknown primary
Symptom Burden
Symptom Burden
Symptom Burden
Symptom Burden
Symptom Burden
Gofton et al., 2011
January 1, 2010 – June 30, 2010
 N=168 – MSKCC Neurology Inpatient Svc

54% Admitted for acute management
 19% Admitted for chemo protocol
 27% Admitted for goals of care transition
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Results
Of 58 who died, 79% discussed hospice.
 hospice discussion was initiated in 1-140
days prior to death.
 79% had appointed a health care proxy.
 70% were DNR.
 Only 12% of patients had a PC consultation
 24% received cancer treatment during the
last month of life
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Beyond seizures…..
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27% headache
19% pain
22% visual changes
14% dysphagia
57% seizures
11% dysarthria
27% aphasia
62% cognitive/personality change
27% delirium
19% sensory change
58% motor deficits
13% spasticity
10% incontinence
66% gait impairment
20% falls
Study Conclusions
Patients with brain tumors and cerebral
metastases have a high symptom burden
 Almost 1/3 of patients admitted to an acute
care setting are coming for a transition from
“curative” to palliative goals of care.
 The timing of hospice discussions varies
greatly (mean one month – most patients are
very impaired at this late stage)
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Communication at the EOL:
Results of Focus Groups
Being honest and straight forward
 Being willing to talk about dying
 Giving bad news in a sensitive way
 Listening to patients
 Encouraging questions from patients
 Being sensitive to when patients are ready
to talk about death

Wenrich MD et al., Arch Intern Med 2001;161:868-874.
Dignity Therapy Protocol
Tell me about your life history. When did you feel most
alive?
Are their specific things that you would want your family to
know about you, to remember?
What are the most important roles you have played in your
life?
What are your most important accomplishments?
What do you feel most proud of?
Are there particular things that you feel still need to be said to
your loved ones?
What are your hopes and dreams for your loved ones?
What have you learned about life that you would want to pass
along?
The ever-present Neurologist
“Don’t just do something, stand there.”
 The promise of non-abandonment
 Gathering the team (spouse, family, friends,
family doctor, other specialists, nurses,
clergy, social worker)
 Initiating an end of life care plan
 Inquiring about support for surviving family
and children.
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To live until you die
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“You matter because you are you, and you
matter until the end of your life. We will do
all we can not only help you to die
peacefully, but to live until you die.”
Dame Cicely Saunders
The enemy before us
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“It is not death that is the enemy, but a painful, impaired, and
unhealthy life before death…Palliative care would be
understood as aimed at all of us, not just at the patients whom
medicine cannot save, hitherto viewed as biologic losers…The
enemies now are serious chronic illness and an inability to
function well…Death will always be with us…We cannot and
will not change that fact. But we can change the way people are
cared for at the end of life, and we can substantially reduce the
burden of illness. It is not, after all, death that people seem to
fear the most, and certainly not in old age, but a life poorly
lived. Something can be done about that.”
Daniel Callahan, March 2, NEJM, 2000.
Acknowledgements
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Kathleen Foley, MD
Teneille Gofton, MD
Lisa Deangelis, MD
Jerome Posner, MD