Palliative Care Continuum
Carri Siedlik - APRN, ACHPN
Nurse Practitioner
Advanced Certified Hospice and Palliative Nurse
Palliative Care Program
The Nebraska Medical Center
Death and Dying in America
• Unprecedented
• Lack of control over
number of older
rising drug/device costs
Americans with
• Failure to treat pain and
chronic illness
other symptoms
• Technology is
prolonging life but not
restoring it
• Exploding healthcare
costs
• Many uninsured
Meier, 2010
View of Advanced Illness and the Care that is
Involved
• Frequent emergency room visits• Treatments continued near
death may prevent/delay
• Increase of in-patient
hospice services
admissions
• Futile care
• Promote suffering
• Increase risk of depression and
anxiety
• Promote complicated
bereavement for family
Greer et al., 2012
members/caregivers
What Constitutes Good Quality Care At
the End of Life?
• For Healthcare Team: Providing symptom management
and discussing emotional aspects of the disease.
• For Patients: Achieving a sense of control, attaining
spiritual peace, succeeding in having finances in order,
strengthening relationships
with loved ones, believing their life
had meaning.
Grant & Dy, 2012; Jacobsen et al., 2011
Cause of Death
Demographic and Social Trends
Medicine's Focus
Cause of Death
Death rate
Average Life
Expectancy
Site of Death
Early 1900s
Current
Comfort
Cure
Infectious Diseases
Communicable Diseases
1720 per 100,000
(1900)
50
Home
Caregiver
Family
Disease/Dying
Trajectory
Relatively Short
Chronic Illnesses
800.8 per 100, 000
(2004)
77.8
Institutions
Strangers/
Health Care Providers
Prolonged
Administration on Aging, 2010; Kochanek et al., 2011; Minino, et al, 2009
Illness/Dying Trajectories Sudden
Death, Unexpected Cause
Health Status
< 10% (MI, accident, etc.)
Death
Time
Field & Cassel, 1997
Health Status
Illness/Dying Trajectories
Steady Decline, Short Terminal Phase
Death
Time
Field & Cassel, 1997
Illness/Dying Trajectories
Slow Decline, Periodic Crises, Death
Decline
Crises
Death
Time
Field & Cassel, 1997
Toll of Death and Dying on Patients &
Families/Caregivers
• Older adults may be cared for
• Patients fear they will be a
by an aged spouse who is also
physical and financial burden
ill
• If “nothing more can be done,”
• Older children caring for a
will healthcare providers
parent may also have acute or
abandon them?
chronic illness(es)
• How do families and caregivers
adjust to role changes?
• Many drain life savings and/or go
bankrupt to cover medical costs
Egan-City & Labayak, 2010; Given et al., 2012
Overview of Caregivers:
Their Commitment and The Cost
• Over 44 million adults • 40% of women and 26%
provide unpaid care to of men caregivers report
sick/disabled adults
emotional strain
• Average of 21 hours a • Cost of uncompensated
week
care = $257 B/year
• ~ 33% are elderly
• Most are women in
their mid 40’s,
working full-time
Meier, 2010
Remember Patients Who Are Veterans:
96% of all Veterans Die in Non-VA
Facilities
• US Veterans: 23,442,000
• 900 WW II Veterans die a day
• Veteran deaths account for almost
28% of all US deaths
• Nearly 40% of enrolled Veterans live
in rural communities
• 121,000 Veterans are without
shelter or healthcare, hence no
access to hospice or palliative care
Casarett 2008, NHPCO, 2011
Changes Must Be Made: Development
of Standards to Guide Practice
• National Consensus Project (NCP) for Quality
Palliative Care: Promotes evidence-based
practices to optimize palliative care programs
• National Quality Forum: Developed
quantifiable quality indicators
• The Joint Commission: Advanced Certification
in Palliative Care
NCP and NQF: 8 Domains of Palliative
Care
• Structure and processes of
care
• Physical aspects of care
• Psychosocial/psychiatric
aspects of care
• Social aspects of care
• Cultural aspects of care
• Spiritual, religious, and
existential aspects of care
• Care of the imminently
dying patient
• Ethical and legal aspects
of care
NCP, 2013
Report to Congress: National
Strategy For Quality Improvement in
Healthcare
• Palliative care compliments national
aim to improve quality of care at the
local/state/national level
– Better Care: Must be patientcentered, reliable, accessible, safe
– Affordable Care: Reduce cost for
individuals, families, employers,
government
http://www.healthcare.gov/news/reports/quality03212
011a.html
Barriers to Quality Care at the End of
Life
• Failure to acknowledge the limits of medicine
• Lack of training for healthcare providers
• Hospice/palliative care services are poorly
understood
• Rules and regulations
• Denial of death
Meir, 2010; NHPCO, 2011
What is Hospice?
•
•
•
•
Definition
History
Services included
Statistics
What is Palliative Care?
• Definition
• History
Current Practice of Hospice
and Palliative Care
Curative
Treatment
Palliative
Care
Hospice
Continuum of Care
Death
Disease-Modifying
Treatment
Hospice
Care
Bereavement
Support
Palliative Care
Terminal Phase of
Illness
Hospice Medicare Benefit Eligibility
Criteria:
• The patient’s doctor and the hospice medical director use
their best clinical judgment to certify that the patient is
terminally ill with life expectancy of six months or less, if the
disease runs its normal course
• The patient chooses to receive hospice care rather than
curative treatments for his/her illness
• The patient enrolls in a Medicare-approved hospice program
http://www.nhpco.org
Payment for Hospice and Palliative
Care
• Hospice:
– Medicare
– Medicaid
– Most private
health insurers
• Palliative Care:
– Philanthropy
– Fee-for-service
– Direct hospital
support
Stop and Consider
Which of the following patients could benefit
from palliative care?
• A. 64 year-old with congestive heart failure,
hypertension and diabetes
• B. 32 year-old with acute myelogenous
leukemia
• C. 57-year-old with newly diagnosed
amyotrophic lateral sclerosis
• D. 76 year-old with Parkinson’s disease
Let’s Practice: A Case Study
• 70 y/o woman with newly
diagnosed pancreatic cancer.
• Live alone. Retired school
teacher.
• Only Son lives in another state
Quality-of-Life Model
Physical
Psychological
Functional Ability
Strength/Fatigue
Sleep & Rest
Nausea
Appetite
Constipation
Pain
Anxiety
Depression
Enjoyment/Leisure
Pain Distress
Happiness
Fear
Cognition/Attention
Quality of Life
Social
Financial Burden
Caregiver Burden
Roles and Relationships
Affection/Sexual Function
Appearance
Spiritual
Hope
Suffering
Meaning of Pain
Religiosity
Transcendence
http://prc.coh.org
Maintaining Hope in the Midst of
Death
•
•
•
•
•
Experiential processes
Spiritual processes
Relational processes
Rational thought processes
Remember the caregiver
Ersek & Cotter, 2010
Tools and Resources for Palliative
Care
Assessment Tools
• Physical symptoms
• Emotional symptoms
• Spirituality
• Quality of life
• Caregivers outcomes
http://prc.coh.org
Prognostication
• Consists of 2 parts:
– foreseeing (estimating prognosis)
– foretelling (discussing prognosis)
• Performance status
– Karnofsky – ECOG poor predictors, multiple symptoms,
biological markers (e.g. albumin)
– “Would I be surprised if this patient died in the next 6 months?”
Hui, 2012
Stop and Consider: Prognostication
• Kay, a 68-year-old woman with heart failure
– Dyspnea at rest
– On ACE inhibitors and beta blockers
– Ejection fraction (EF) < 20%
– Syncope
– Resistant ventricular or supraventricular
arrhythmias
• Would she qualify for hospice care, given
these symptoms?
Role of the Nurse in Improving
Palliative Care
• Some things cannot be
“fixed”
• Use of therapeutic presence
• Maintaining a realistic
perspective
Extending Palliative Care Across
Settings
• Nurses as the constant
• Expanding the concept of healing
• Becoming educated (Certification, HPNA)
Final Thoughts…..
• Quality palliative care addresses
quality-of-life concerns
• Increased nursing knowledge is
essential
• “Being with”
• Importance of interdisciplinary
approach to care
“… touching the dying, the poor,
the lonely, and the unwanted
according to the grace we have
received, and let us not be
ashamed or slow to do the
humble work.”
-Mother Teresa
To Comfort Always
