Transcript End of Life and Palliative Care

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Early 1900s
 Average life expectancy 50
years
 Childhood mortality high
 Adults lived into 60s
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Prior to antibiotics people died
quickly
 Infectious disease
 Accidents
Medicine focused on caring, comfort
Nursing care in the home
Sick cared for at home
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Science, technology, communication
Marked shift in values, focus of North
American society
 Death denying
 Value productivity, youth,
independence
 Devalue age, family, interdependent
caring
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Potential of medical therapies
 fight aggressively against all illness,
death
 prolong life at all costs
Improved sanitation, public health,
antibiotics, other new therapies
Death now the enemy
 Sense of failure if patient not saved
 Modern
health care
few cures
longer life with chronic
illness
dying process prolonged
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More than 90% will experience:
 predictable steady decline with
relatively short terminal phase
 slow decline punctuated by
periods of crisis
Sudden death from an unexpected cause
Death
Time
Steady decline, short terminal phase
Decline
Death
Time
Slow decline, periodic crisis, sudden death
Decline
Crises
Death
Time
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http://www.youtube.com/watch?v=F6xPBmk
rn0g
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Fears, fantasy, worry
Multiple physical symptoms
 9.7 - 13.5 average
Psychological distress
Social isolation
Caregiving
Financial pressures
Vary among individuals
 May become destructive
 suicidal ideation
 premature death via physician
assisted suicide or euthansia
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Preference: 90% want to die at home
Reality: 20% will die at home
Majority of institutional deaths
could occur at home
Societal lack of familiarity with
dying process
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Hospice started in US in 1970s
Percentage of total US deaths in hospice
 11% in 1983
 17% in 1995
Median length of stay
 20 days
Fears
 Die on machine
 Die in discomfort
 Be a burden
 Die in institution
Desires
 Die not on
ventilator
 Die in comfort
 Die with family
and friends
 Die at home
Adapted from lecture by
Maxine de la Cruz, MD
What is
Palliative
Care?
Palliative care is an approach
that improves the quality of life
of patients and their families
facing the problem associated
with life-threatening illness,
through the prevention and
relief of suffering by means of
early identification and
impeccable assessment and
treatment of pain and other
problems, physical,
psychosocial and spiritual.
In patients with serious illnesses, irrespective
of prognosis (any age/stage)…
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Complex Symptom Management
Emotional and Spiritual Support for Patients
And Families
Assistance with Difficult Medical Decision
Making
Support for Referring Physicians and Plans of
Care
Assistance with Coordination of Care (i.e.
home/outpt Palliative or transitions to Hospice
Care)
Not your Momma’s Palliative Care:
A Conceptual Shift
Life Prolonging Care
Life Prolonging
Care
Medicare
Hospice
Benefit
Hospice Care
Palliative Care
Dx
Death
Old
New
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Palliative care can be employed from time of diagnosis until
death
It has a role in the relief of symptoms and suffering and
improving quality of life
What are the goals of
Palliative Care
Reduce physical and emotional symptoms
• Improve function and reduce disability
• Integrating complimentary therapies into patients’ current treatment
• Coordinate with patient’s primary care specialist in order to achieve the
best possible care
• Assist in making informed decisions throughout their illness
• Offer assistance in finding end-of-life resources and coordinating care
with community services
• Allow simultaneous palliation of suffering along with continued
treatment (no requirement to give up curative care)
•
Why is Palliative Care
Different
Patient and family centered approach to care that
optimizes quality of life by anticipating, preventing,
and treating suffering
• Interdisciplinary team work closely together
• A model of shared decision making
•
The Patient’s Perspective
What Do Palliative Care patients 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.
Components
of Palliative
Care
People of all ages
with life threatening illness and their families benefit from palliative
care
at various stages of their disease
with congenital injuries or dependent on life-sustaining treatment
with acute, serious, life-threatening illness
living with progressive Chronic conditions
with Chronic and limiting injuries from accidents or other forms of
trauma
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Clinical Team
Physician
Nurse Practitioner
Nurse
Dietician
PT/OT
Pharmacist
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Psychosocial Team
Social Worker
Case Manager
Psychologist
Chaplain
What are the common symptoms
experienced by patients
PAIN
INSOMNIA
CONSTIPATION
FATIGUE
DEPRESSION
SPIRITUAL DISTRESS
NAUSEA
ANXIETY
CONFUSION/DELIRIUM
CACHEXIA
DROWSINESS
ANOREXIA
SHORTNESS OF BREATH
Symptoms at the End of Life: Cancer
vs. Other
Cancer
Other
Pain
84%
67%
Trouble breathing 47%
49%
Nausea and vomiting
51%
27%
Sleeplessness
51%
36%
Confusion
33%
38%
Depression
38%
36%
Loss of appetite 71%
38%
Constipation
47%
32%
Bedsores
28%
14%
Incontinence
37%
33%
Seale and Cartwright, 1994
Patient with Pain
Pain is an unpleasant sensation happening in varying degrees of severity.
• Caused by direct effect of the tumor or from treatment such as radiation
therapy or chemotherapy.
• Untreated pain may interfere with:
Daily activities and function
Appetite
Sleep
Joy with family and friends
• When pain is well controlled you can:
Be active
Interact with family and friends
Sleep better
Improved quality of life
• Opioids such as morphine are needed to control pain in most patients
• Other non pharmacologic therapies that may be used include:
Breathing and relaxation exercises Guided imagery
Massage, pressure and vibration
Music therapy
Distraction
Heating pads and cold packs
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Patients’ concern with
pain medications
“I can only take medicine or other treatments when
I actually have pain.”
“I will become ‘hooked on’ or ‘addicted to’ pain medicine.”
“If I take too much medicine now, it will stop working,
and I may need it later.”
“If I complain too much, I am not being a good patient.”
Approach to a Patient with Multiple
Symptoms
• 55 y/o male with prostate Ca, metastatic to bone
• complains of fatigue, drowsiness and back pain – x 2
weeks, partial relief with hydrocodone
• also noted to have swelling of the legs, anxiety,
emotional distress
• Cancer treatment cancer included surgery, androgen
blockade with Casodex, and Taxotere
• Had a very supportive family
• Wife also recently diagnosed with Liver cancer and
receiving therapy
Interdisciplinary approach to
treatment
Address pain control via
opioids and behavioral
therapies
Physical therapy for
mobilization and
strengthening
Other therapeuitic modalities
like art therapy, music therapy
Psychosocial team members
for emotional and spiritual
support
Use of psychostimulants for
fatigue and drowsiness
Patients with
Fatigue
Fatigue is excessive
feelings of tiredness that
may not be relieved by
extra amounts
of sleep or rest. Fatigue
is controllable.
Causes
• Pain
• Emotional stress/ lack of sleep
• Infection
• Low red blood cell counts
• Inactivity/deconditioning
• Advanced cancer or cancer
treatment
• Difficulty breathing
Patients with Fatigue
What can we do?
What can the family do?
Treat possible reversible
causes.
Encourage physical
activity
Phamacologic
management
Continue to engage
patients in meaningful
interactions
Non-pharmacologic
therapies
Lifestyle and
environmental
modifications
What awaits us in the
future?
Studies focused on
treatment: thalidomide,
dexamethasone,
donepezil,
methylphenidate
Bruera and Hui, 2012, p1261-1269
Bruera and Hui, 2012, p1261-1269
Bruera and Hui, 2012, p1261-1269
Bruera and Hui, 2012, p1261-1269
Bruera and Hui, 2012, p1261-1269
Patient and Hospice Care
Even if there are no further plans
for treatment of the cancer,
patients will continue to need
medical care. Hospice care is
provided at home by trained
health care providers.
Hospice Services:
• Physician services and home care visits by
hospice nurse
• Home health aide and homemaker services
• Spiritual support and social work
• Medical equipment and supplies
• Medications
• Volunteer support
• PT/OT, speech therapy and dietary
counseling
• Bereavement counseling and support services
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Important part of palliative care
Refers to the care of a person during the “last
part” of their life, from the point at which it has
become clear that the person is in a progressive
state of decline, may be from hours to months
depending on the clinical situation.
May be referred to as terminal illness and
terminal care.
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“You matter to the last moment of your life,
and we will do all we can to help you not only
to die peacefully, but also to live until you
die.”
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Dame Cicely Saunders, founder of the hospice
movement
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“Home”: primary or family residence,
nursing home, group home, assisted living
facility; mandated to be >80% of delivered
care of any hospice’s services
Inpatient facility: Short term, 3-5 days
Continuous care at home: Highly regulated,
typically 24 hours
Respite care
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Advanced disease with life expectancy of
“six months or less” given natural course
of disease (may be longer if patient meets
criteria)
Poor functional/nutritional status
High morbidity/mortality markers
Patient or SDM must give consent
Payment sources
Culture
Race
Religious Diversity
Insurance issues
Geography
Healthcare staff
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Median survival in Hospice care is 2-3 weeks,
primarily due to late physician referrals
The Surprise Question
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http://www.youtube.com/watch?v=YDTOEv
xk_qY
DEATH IS SO LIMITED
It cannot cripple love.
It cannot shatter hope.
It cannot corrode faith.
It cannot destroy peace.
It cannot kill friendship.
It cannot suppress memories.
It cannot silence courage.
It cannot invade the soul.
It cannot steal eternal life.
It cannot conquer the spirit.
Death is so limited!
Author unknown
Thank You
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Thanks to Dr. Fay, Dr. Maxine de la Cruz, and
Michelle Peck.
If you would like the slides please email
[email protected]
Recommended resources
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EPERC Fast Facts
 http://www.eperc.mcw.edu/EPERC/FastFactsandCo
ncepts
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VITAS hospice app
 https://itunes.apple.com/us/app/vitas-
hospice/id488224057?mt=8
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Bruera, E., & Hui, D. (2012). Conceptual
models for integrating palliative care at cancer
centers. Journal of Palliative Medicine, 15(11),
1261-1269. doi: 10.1089/jpm.2012.0147;
10.1089/jpm.2012.0147