How Americans died in the past Early 1900s Average life expectancy 50 years Childhood mortality high Adults lived into 60s How Americans died in the past Prior to antibiotics people died quickly ID: 930492
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Slide1
End of Life and Palliative Care
Slide2How Americans died in the past
Early 1900s
Average life expectancy 50 years
Childhood mortality high
Adults lived into 60s
Slide3How Americans died in the past
Prior to antibiotics people died quickly
Infectious disease
Accidents
Medicine focused on caring, comfort
Nursing care in the home
Sick cared for at home
Slide4Medicine’s shift in focus..
Science, technology, communication
Marked shift in values, focus of North American society
Death denying
Value productivity, youth, independence
Devalue age, family, interdependent caring
Slide5Medicine’s shift in focus..
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
Slide6End of Life in America today
Modern health care
few cures
longer life with chronic illness
dying process prolonged
Slide7Protracted life threatening illness
More than 90% will experience:
predictable steady decline with relatively short terminal phase
slow decline punctuated by periods of crisis
Slide8Sudden death from an unexpected cause
Time
Death
Health Status
Slide9Steady decline, short terminal phase
Time
Decline
Death
Health Status
Slide10Slow decline, periodic crisis, sudden death
Time
Crises
Decline
Death
Health Status
Slide11Cost of Dying (14:20)
http://www.youtube.com/watch?v=
F6xPBmkrn0g
Slide12Symptoms, suffering
Fears, fantasy, worry
Multiple physical symptoms
9.7 - 13.5 average
Psychological distress
Social isolation
Caregiving
Financial pressures
Slide13Coping Strategies
Vary among individuals
May become destructive
suicidal ideation
premature death via physician assisted suicide or
euthansia
Slide14Place of death
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
Slide15Role of hospice, palliative care
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
Slide16Bridge the Gap:
Large gap between reality, desire
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
Slide17The palliative care approach
Adapted from lecture by
Maxine de la Cruz, MD
Slide18What 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.
Slide19What is Palliative Care?
In patients with
serious
illnesses, irrespective of prognosis (any age/stage)
…
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)
Slide20Not your Momma’s
Palliative
Care: A Conceptual
Shift
Medicare Hospice Benefit
Life Prolonging Care
Old
Palliative Care
Bereavement
Hospice Care
Life Prolonging Care
New
Dx
Death
Slide21Palliative care continuum
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
Slide22Reduce 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)
What are the goals of Palliative Care
Slide23Patient 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
Why is Palliative Care Different
Slide24Pain 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.
The Patient’s Perspective
What Do Palliative Care patients want?
Slide25Components of Palliative Care
Slide26Who Can use 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
Slide27Members of the
Palliative Care Team
Clinical Team
Physician
Nurse Practitioner
Nurse
Dietician
PT/OT
Pharmacist
Psychosocial Team
Social Worker
Case Manager
Psychologist
Chaplain
PAIN
FATIGUE
NAUSEA
CACHEXIA
ANOREXIA
INSOMNIA
DEPRESSION
ANXIETY
DROWSINESS
SHORTNESS OF BREATH
CONSTIPATION
SPIRITUAL DISTRESS
CONFUSION/DELIRIUM
What are the common symptoms experienced by patients
Slide29Symptoms 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
Slide30Pain 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
Patient with Pain
Slide31“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.”
Patients’ concern with pain medications
Slide32Approach 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
Slide33Interdisciplinary 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
Slide34Fatigue 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
Slide35What can we do?
Treat possible reversible causes.
Phamacologic
management
Non-pharmacologic therapies
What can the family do?
Encourage physical activity
Continue to engage patients in meaningful interactions
Lifestyle and environmental modifications
What awaits us in the future?
Studies focused on treatment: thalidomide,
dexamethasone
,
donepezil
, methylphenidate
Patients with Fatigue
Slide36Bruera and Hui, 2012, p1261-1269
Slide37Bruera and Hui, 2012, p1261-1269
Slide38Bruera and Hui, 2012, p1261-1269
Slide39Bruera and Hui, 2012, p1261-1269
Slide40Bruera and Hui, 2012, p1261-1269
Slide41Patient 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
Slide42What is end of
life (EOL)
care?
Important
part of palliative
care
R
efers
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.
Slide43Dame Cicely Saunders
“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
.”
Dame Cicely Saunders
,
founder of the hospice movement
Slide44Where is Hospice?
“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
Slide45Who is eligible for hospice?
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
Slide46Hospice Access Issues
Culture
Race
Religious
Diversity
Insurance issues
Geography
Healthcare staff
Median survival in Hospice care is 2-3 weeks, primarily due to late physician referrals
The Surprise Question
Slide47What is Hospice Care? (2:16)
http://www.youtube.com/watch?v=
YDTOEvxk_qY
Slide48DEATH 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
Slide49Thank You
Slide50Thanks to Dr. Fay, Dr. Maxine de la Cruz, and Michelle Peck.
If you would like the slides please email
Linh.M.Nguyen@uth.tmc.edu
Recommended resources
EPERC Fast Facts
http://www.eperc.mcw.edu/EPERC/
FastFactsandConcepts
VITAS hospice app
https://itunes.apple.com/us/app/vitas-hospice/id488224057?mt=
8
Slide51References
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