Dartmouth Biomedical Libraries
Library Grand Rounds
Palliative and End-of-Life Care
Information Resources
A Case-Based Presentation
December 16, 2004
Ira Byock, M.D.
Director, Palliative Care Program
Dartmouth-Hitchcock Medical Center
Cindy Stewart, M.L.S.
Associate Director/Health Sciences Library
Dartmouth Biomedical Libraries
Objectives

Introducing participants to readily available webbased information resources for “just-in-time”
education and practical management of palliative
care issues.

Familiarizing participants with the Palliative Care
Program at DHMC.

Providing selected clinical pearls related to
therapeutic use of communication in palliative
aspects of care.
Palliative Care -- definition
Interdisciplinary care
for persons with lifePCP
Hospice
Palliative
Physician
Medicine
threatening illness or
& RNs
specialist
Volunteer
injury which addresses Clinical
Coordinator
Pharmacist
physical, emotional,
Patient &
Family
social and spiritual
Hospital
PT/OT/RT
Nursing
Therapists
needs and seeks to
Hospital
improve quality of life for
CRC-Discharge
Pastoral
Planner
the ill person and his or
Social
Care
Dietician
Worker
her family.
Hospice and Palliative Care
Palliative
Care
Hospice
Care
Byock I.
Hospice and Palliative Care: A Parting of Ways or a Path to the Future?
Journal of Palliative Medicine. 1998;1(2):165-176.
Typical Services of Hospice & Palliative Care
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An interdisciplinary team
24/7 availability
Ongoing communication
Advanced care planning
Formal symptom assessment & treatment
Crisis prevention & early crisis management
Care coordination
Spiritual care
Anticipatory guidance
Bereavement support
Palliative Care at DHMC
Physicians
Ira Byock, M.D.
Frances Brokaw, M.D.
Diane Palac, M.D.
Thomas Prendergast, M.D.
Nurse Practitioners
Lisa Szczepaniak, MSN, ARNP
Marie Bakitas, MSN, ARNP
Peggy Bishop, MS, ARNP
Network and Program Development
Yvonne Corbeil
Administrative Assistant
Geri Barden 650-5402
Palliative Care in the Hospital
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Goals of care clarification
Pain & Symptom assessment & treatment
Family support
Counseling & Anticipatory Guidance
 Adaptation to illness & prognosis
 Issues of life completion & closure
 Discharge planning
 Planning for home care
 Transition to home hospice
Access To Tools
Where to go for definitions and basic information
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Glossaries
Web-based resources – quick information
re palliative treatments and clinical tips
Textbooks
Journals
www.stoppain.org
www.growthhouse.org
www.nhpco.org
www.PromotingExcellence.org
www.PromotingExcellence.org
www.PromotingExcellence.org
www.PromotingExcellence.org
www.PromotingExcellence.org
www.PromotingExcellence.org
Up To Date
www.utdol.com
Up To Date
www.utdol.com
MDConsult
MDConsult
www.growthhouse.org
Print resources from Dartmouth Libraries
Print resources from Dartmouth Libraries
Print resources from Dartmouth Libraries
eJournals
eJournals
eJournals
The case…

Mrs. Smith is a 72 year old Caucasian woman
from upstate New York with who is admitted
to DHMC with acute dyspnea, altered mental
status and low grade fever.
Mrs. Smith – Medical History
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She has been treated for Stage IIA
(T1N1M0) adenocarcinoma of the
right upper lung diagnosed in
March 2003.
She completed neo-adjuvant
chemotherapy and radiation
therapy followed by lobectomy in
April 2003.
Post-op course was complicated
by R lower extremity deep vein
thrombosis. A Greenfield filter was
placed.
Mrs. Smith – Social History

Mrs. Smith and her 79 yo husband moved from
Rochester, NY 2 years ago to a small home in Milford,
NH to be closer to family. Her husband has mild
memory loss and confusion and requires her
assistance to maintain daily activities.

Their daughter, Ann, who is the durable power of
attorney for health care (DPOAHC) for both her
parents, lives in Nashua. She apparently was the
person who called the ambulance this morning.

The couple’s son lives in Boston. He is an attorney with
the an oil company and often travels overseas.
Mrs. Smith – case unfolds

Ann Smith arrives at the hospital 3 hours after the
patient is admitted, saying that her mother hadn’t
answered the phone that morning and she had
arrived at their home and found her mother in bed,
confused. She had been incontinent and had no
memory of last night.
Mrs. Smith – case unfolds

Her father was sitting at the kitchen table, looking
bewildered. He had been trying to make breakfast for
Mrs. Smith and himself. The refrigerator door was
open and various containers scattered around the
counters and kitchen table.

Ann hastily arranged for a neighbor to stay with her
father for the day before driving to DHMC.
Mrs. Smith – case unfolds
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CBC, electrolytes, calcium, BUN are all wnl
CXR shows a LUL infiltrate and signs of
previous RUL surgery.
Cranial MRI reveals a large frontal and
smaller parietal cerebral metastases.
imagesMD
Mrs. Smith – Diagnoses
NSCLC
 Cerebral metastasis
 Possible seizure
 Probable aspiration pneumonia

Mrs. Smith – case unfolds
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Patient’s daughter, Ann, asks your advice. She just
spoke with her brother who is in London on
business. He is emotionally struggling with their
mother’s illness and is not acknowledging the
seriousness of her condition.

He is flying home and will be coming to the hospital
within 36 hours.

She asks you to meet with her and her brother to
discuss her mother’s prognosis and to assist her
and her brother in making decisions that are in their
parents’ best interests.
Management Resources
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Clinical Guidelines
Hospice organizations
Communication resources
EPERC: End of Life & Palliative Education
Resource Center
EPERC: End of Life & Palliative Education
Resource Center
EPERC: End of Life & Palliative Education
Resource Center
National Guidelines Clearinghouse
National Guidelines Clearinghouse
National Guidelines Clearinghouse
Decision-making and Communication
Decision-making and Communication
Pitfalls in care planning
for patients w/o decision-making capacity
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Failure to reach shared appreciation of pt’s
condition and prognosis
Failure to apply substituted judgment
Offering choice between care and no care, rather
than between prolonging life and quality of life
Too literal interpretation of an isolated, out-ofcontext, earlier statement
Failure to address the full range of decisions &
options
Lang F, Quill T.
Making decisions with families at the end of life.
Am Fam Physician. 2004. 70(4):719-723.
Decision-making and Communication
eJournals
Decision-making and Communication
eJournals
Prendergast TJ, Puntillo KA.
Withdrawal of life support: intensive caring at the end of life.
JAMA Dec 4 2002;288(21):2732-2740.
Decision-making and Communication
eJournals
Prendergast TJ, Puntillo KA.
Withdrawal of life support: intensive caring at the end of life.
JAMA Dec 4 2002;288(21):2732-2740.
Decision-making and Communication
eJournals
Prendergast TJ, Puntillo KA.
Withdrawal of life support: intensive caring at the end of life.
JAMA Dec 4 2002;288(21):2732-2740.
Mrs. Smith – case unfolds

The next day Mrs. Smith is more alert, but
slightly confused. She complains only of a
moderate headache.

Two days after admission, Mrs. Smith is fully
oriented with intact cognitive and motor
function.
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In discussion with her medical oncologist and
the in-patient attending, she declines whole
brain radiation, and chemotherapy.

When CPR is discussed, she firmly requests that
a DNR order be written.
Mrs. Smith – Discharge planning issues
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Mrs. Smith’s daughter is willing to take her parents
to her and her husband’s home in Nashua. She
asks about hospices in the area.

She is also worried about controlling pain in their
home.

She asks what she should do if a seizure occurs.
Locating a hospice program
Locating a hospice program
Locating a hospice program
Locating a hospice program
Home Health & Hospice Care (Nashua)
Locating a hospice program
Home Health & Hospice Care (Nashua)
Advance Directives
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Advance directives – Are the couple’s NY
advance documents valid?

If she didn’t have a DPOAHC, where could we
find one?
Advance Directives
Advance Directives
Advance Directives
www.Partnershipforcaring.org OR www.growthhouse.org
Advance Directives
www.Partnershipforcaring.org OR www.growthhouse.org
Home care for Seizures
Home care for Seizures
Home care for Seizures
Home care for Seizures
Home care for Seizures
Home care for Pain
Home care for Pain
Home care for Pain
Home care for Pain
Resources for
Communication & Counseling
Resources for Communication & Counseling
7-steps for structuring communication
regarding care at the end of life
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Prepare by confirming facts & establishing environment
Establish what the patient (and family) knows
Determine how information is to be handled
Deliver information in sensitive, straightforward manner
Respond to emotions of patients, parents, & families
Establish goals for care and treatment priorities
Establish an overall plan
von Gunten CF, Ferris FD, Emanuel LL
Ensuring competency in end-of-life care: communication & relational skills.
JAMA 2000;284(23):3051-3057.
Resources for Communication & Counseling
Patient information:
 MedlinePlus
 Handbook for Mortals
 ENABLE – Charting Your Course
 Completing a Life
 Dyingwell.org
Resources for Communication & Counseling
Resources for Communication & Counseling
Resources for Communication & Counseling
Dartmouth
Project ENABLE – Charting Your Course
Resources for Communication & Counseling
Resources for Communication & Counseling
Resources for Communication & Counseling
http://commtechlab.msu.edu/sites/completingalife/
Resources for Communication & Counseling
http://commtechlab.msu.edu/sites/completingalife/
Resources for Communication & Counseling
www.dyingwell.org
Resources for Communication & Counseling
www.dyingwell.org
Mrs. Smith – Case Concludes

Two months after discharge, you receive a call
from the Nashua hospice program saying that
Mrs. Smith died comfortably at her daughter’s
home with her extended family present.

Two weeks later Ann Smith sends a card
expressing her and her family’s appreciation for
the care you gave her mother and the support
of their family.