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M O L L Y B U M P U S , M S N , A R N P , A C H P N
P A L L I A T I V E C A R E S E R V I C E
V I R G I N I A M A S O N H O S P I T A L
F U N D A M E N T A L O F O N C O L O G Y N U R S I N G
F E B R U A R Y 2 8 T H , 2 0 1 3
Palliative Care & End-of-Life
Learning Objectives
Define the philosophy of palliative care & supportive care Describe the difference between Palliative care and
Hospice care. Understand common documents explained at the EOL
including, Advance Directives, Living Wills, POLST, and surrogate decision makers.
Describe cultural influences at End of Life (EOL) Identify normal and abnormal signs/symptoms in the
dying patient. Describe appropriate interventions to manage EOL.
Describe and develop appropriate communication strategies when working with patients and families dealing with palliative care and EOL.
“YOU MATTER BECAUSE YOU ARE YOU, AND YOU MATTER ALL
THE DAYS OF YOUR LIFE”.
-DAME CICELY SAUNDERS
What are Palliative Care & Hospice Care?
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What is Palliative Care?
Palliative care is specialized medical care for people with serious illnesses. This type of care is focused on providing patients with relief from the symptoms, pain and distress of a serious illness, whatever the diagnosis. The goal is to improve quality of life for both the patient and the family.
Center to Advance Palliative Care, 2011
What is Palliative Care?
Patient’s living with life-limiting illness
Not prognosis dependant
Prevention and relief of physical and emotional symptoms
Inter-disciplinary
Goal: improve QOL
Cancer
Heart Failure
COPD
ESLD/ESRD
Stroke
Dementia & Alzheimer’s
ALS
• P A L L I A T I V E C A R E I S P R O V I D E D B Y A P A R T N E R S H I P O F T H E P A T I E N T , D O C T O R S , N U R S E S , A N D S O C I A L W O R K E R S , A L O N G W I T H O T H E R S P E C I A L I S T S W H O W O R K W I T H A P A T I E N T ’ S O T H E R D O C T O R S T O P R O V I D E A N E X T R A L A Y E R O F S U P P O R T . P A L L I A T I V E C A R E I S A P P R O P R I A T E A T A N Y S T A G E I N A S E R I O U S I L L N E S S , A N D C A N B E P R O V I D E D T O G E T H E R W I T H C U R A T I V E T R E A T M E N T .
C E N T E R T O A D V A N C E P A L L I A T I V E C A R E , 2 0 1 1
Who provides palliative care? Why is PC Important?
2013 JAMA Internal Medicine: Early Palliative Care in
Advanced Lung Cancer: A Qualitative Study
Patient’s survival longer on hospice then with chemo
2010 New England Journal of Medicine
Pts w/ mets NSCL ca; randomized into early PC or standard
Early PC led to significant improvements in both QOL & mood
Early PC pts had less aggressive care at EOL, longer survival
2008 Archives of Internal Medicine
PC consult associated with significant hospital cost savings & improvement in decrease hospital re-admission rates
$279/day for PC d/c’d alive and $374/day for PC who died
Reductions laboratory, ICU, and pharmacy costs
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Hospice Care
Hospice is specialized care for people with life-limiting illness
Prognosis of 6 months or less
Addresses physical, emotional, social, & spiritual needs
Affirms life & regards dying as a natural process; does not hasten death
Hospice Team: Medical director, RN, SW, CNAs, Pharm, Spiritual care, Bereavement counselors, trained volunteers
Hospice benefit paid by Medicare, Medicaid & most private insurances
Legal Matters with Serious Illness & EOL
Advance Directives
Living will: directs physician to withhold/withdraw life-prolonging
interventions
Medical Power of Attorney (DPOA-HC): identifies person to make health care decisions if patient is
unable
Other: 5 WISHES, The Conversation Project, WA state Medical Association (DPOA), Compassion & Choices (ADs for patient’s with dementia)
Hierarchy of Surrogate Decision Making
WA (RCW 7.70.065) Court appointed guardian
DPOA
Spouse (no common law in WA)
Adult Children
Parents
Adult Siblings
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POLST Form
Translates wishes of an individual into actual physician orders Full code or DNR (allow natural death)
Medical Interventions: Comfort only, limited additional interventions, full treatment
Antibiotics: None, Determine use if infections occurs w/comfort as goal, always use if life can be prolonged
Artificial Nutrition: None, Trial period (goal and defined amt of time), and always use to prolong life
Must be signed by patient or DPOA & MD, ARNP, PA
Portable from one care setting to another
State specific document
Nursing Care at End of Life
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Diagnosis of Death & Dying
Definition of Death Natural Death: absence of cardiopulmonary function
Brain Death: irreversible cessation of all functions of the entire brain, including the brainstem
Dying
The last phase of life before death
Dynamic process
Sudden, short trajectory, long trajectory
Dependant on illness and other factors
Signs of Approaching Death
Signs in finals days and hours
Bedridden
Profound weakness
Little interest in food or drink
Difficulty swallowing
Increasing somnulence
Cool, clammy, cyanotic skin
Decreased UO
Decreased LOC
Cheyne-Stokes respirations
“Death ratte”
Signs & Symptoms of Death
Comfort Care
D/c vitals, labs, xrays, etc. Temperature fluctuations
Changes in BP, HR
Medication changes
Decrease environmental stimulation
Continue to turn q2 hours Weakness and fatigue
Skin care & dressing
Foley, rectal tube as needed
Decrease urine output; Incontinence
Pain Mgmt @ EOL
Frequent Assessment Verbal pain scale
Non-verbal assessment; RR, HR, facial grimacing or muscle tone
Medication Administration
PO, IV, patch, rectal, sub-q
Family involvement in pain assessment
Principle of the Palliative Sedation
Concept of Double Effect
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Palliative Sedation and Double Effect
Palliative sedation (PS) is the use of medications to induce decreased or absent awareness in order to relieve otherwise intractable suffering at the EOL.
http://www.ncbi.nlm.nih.gov/pubmed/20805544 (PS)
Double Effect
Although a review of the medical literature reveals that the risk of respiratory depression from opioid analgesic is more myth than fact, and that there is little evidence that the use of medication to control pain hastens death, the belief in the double effect of pain medication remains widespread.
http://www.hospicecare.com/Ethics/fohrdoc.htm
International Association of Hospice & Palliative Medicine
SUSAN ANDERSON FOHR, J.D., M.A.
Respiratory Changes
Changes in rate, depth, and rhythm
Periods of apnea
Cheyne-Stokes
Accessory muscle use
Air hunger
Respiratory secretions: the “death rattle”
Weak cough and swallow reflex
Medications to manage secretions Scopolomine, atropine
Changes in Circulation
Color may become waxy and pale
Cyanosis of fingers, earlobes, lips, nail beds
Mottling: purplish or blotchy red-blue coloring on knees and/or feet
Extremities may feel cool to touch
BP gradually drops
HR increases, but becomes more weak and irregular
Wasting leads to loss of retro-orbital fat pad which decreases length of eyelids and leaves part of eye exposed when pt is sleeping
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Changes in Mentation
Confusion and disorientation
Hallucinations
Drowsiness & increased sleep
Vision & hearing changes
Terminal delirium
Hydration & Dehydration
Lack of appetite and thirst at end of life No desire to eat or drink due to slowing of metabolism and the
body’s effort to conserve energy
Dehydration does not cause distress; may stimulate endorphine release that adds to the patient’s sense of well being
IV hydration may prolong the dying process and cause discomfort
Excess fluids can worsen ascites, peripheral/pulm edema
Ice chips, lip balm, eye drops, oral sponges
Post-Mortem Care
Notification, pronouncement, autopsy, donor
Physical care of the deceased Bathing
Eyes and mouth open
Lines, drains, etc.
Personal belongings
Privacy and respect
Cultural and Personal preferences of family
P E O P L E C O M E F R O M A V A R I E T Y O F D I F F E R E N T R A C I A L , E T H N I C , & R E L I G I O U S D I F F E R E N C E S W H I C H A L L I N F L U E N C E H O W
T H E Y D E C I D E O N A P L A N O F C A R E & H O W T H E Y P L A N F O R E N D O F L I F E
Cultural Awareness at EOL
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Cultural influences
Join Commission resource:
Cultural Sensitivity:
A pocket guide for health care professionals
• Galanti, Geri-Ann, Ph.D., Woods, Michael S. MD 2007
Culture Sensitivity
African American: May be very sensitive to discrimination, even when it is not
intended
May not trust hospitals
Religion is often a very important part of this culture
Patients generally prefer an aggressive approach to treating illness
Traditionally stoicism is valued when someone dies
Cultural Sensitivity
Asian/South & Southeast Asian Culture values personal relationships
As a sign of respect, patients may avoid direct eye contact
When a pt is terminally ill, family members may wish to shield him/her from that fact (ask pt who should be given info about illness/condition)
Avoid the #4; the character for #4 is pronounced the same the character for the word “death.” It signifies death for Chinese, Japanese, Korean patients. (avoid room/operating room #4)
Cultural Sensitivity
Hispanic/Latino Allow family members to express their love and concern by
spending as much as possible with the patient
Patients may not discuss emotional problems outside family
Family members will likely want to withhold a fatal diagnosis from the patient
Herbal remedies are common practice in their culture (be sure to include in a health history)
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Cultural/Religious Awareness at EOL
Jewish
May want visit from rabbi
Burial should be as soon as possible before & before the Sabbath
Autopsy, embalming, & cremation may not be acceptable
Family may want to remain w/ body until burial (including while body is in morgue)
Catholic
May want visit from priest to receive communion & sacraments
Family may want to bring in rosary (or they are available in hospital through spiritual care)
Burial may be preferred over cremation
Cultural/Religious Awareness at EOL
Protestant May want visit from pastor/minister
May ask for last rites or anointing of the soci
May want to participate in prayer or services
Burial or cremation may be requested
Muslim
Family may want to perform special washing & shrouding of body
Cremation is unacceptable
Wearing gloves when caring for the body is important consideration
Family may place body facing Mecca
Grief Reactions
• A N A T U R A L P R O C E S S T H A T E N A B L E S F A M I LY & F R I E N D S T I M E T O P R E PA R E F O R T H E R E A L I T Y O F T H E A P P R O A C H I N G L O S S O F A L O V E D O N E .
• T H I S C A N B E A N O P P O R T U N I T Y T O T A L K W / Y O U R L O V E D O N E A B O U T T H E M E A N I N G O F A P E R S O N ’ S L I F E & D E A T H
• L E T T H E M K N O W T H E Y W I L L B E L O V E D & M I S S E D
• C A N U S E T H I S T I M E T O R E S O LV E C O N F L I C T S , R E PA I R R E L A T I O N S H I P S , P R O V I D E F O R G I V E N E S S
Anticipatory Grief
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Life Review
Reviewing memories with family & friends, often from childhood or early life.
Helping a loved one with this life review adds meaning to their experience & allows you an opportunity to remember special times.
When I loved one becomes too weak to talk, a family can continue this review by speaking softly & calmly at the bedside.
Normal Grief
No order to grieving process: may experience anger, guilt, confusion, denial, sadness, despair, yearning.
Physical symptoms can include crying, headaches, diarrhea, dizziness, loss of appetite, irritability, fatigue, trouble sleeping.
Over time, these feelings start to lessen in their intensity.
Anniversaries & holidays can trigger emotions.
Encourage family to be patient w/ themselves. Grieving is not an event, it is a process
Complicated Grief
For some people the normal grief reaction becomes more complicated. Painful emotions can become very severe & persistent.
Examples:
Life may lack meaning or purpose
Difficulty concentrating, avoiding friends, avoiding social situations
Extreme feelings of guilt, depression, helplessness
Overwhelming suicidal thoughts
Abusing alcohol of drugs
Reluctance to adapt to a life in the absence of the loved one
What do I say? Communication Strategies at End of Life
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Communication Strategies
Step One: Gain Trust Tell me about your Dad. What is he passionate about?
Where did you grow up?
What is this like for you?
Step Two: Ask and Acknowledge Can you tell me more about what you’re feeling?/It’s normal to
be sad/cry/angry at times like this.
What are you hoping for?/ We hope for that too.
Are you frustrated?/ I’m sorry this isn’t going as you hoped.
Communication Strategies
Step Three: Determine Preference for Receiving Information Some pts prefer to hear only the big picture, whereas other
want a lot of details. What do you prefer?
Do you have any questions about what to expect next?
Step Four: Look for Unspoken Messages
Unresolved guilt, fear of death, anger as mask for sadness
Step Five: Listen, listen and the listen again Don’t just do something, stand there
Elicit stories: I remember when you told me…
Do you have any questions? Can I bring you anything?
What NOT to Do or Say
Do not judge or dismiss
feelings
Do not offer clichés
“he’s in a better place”
Do not try to fix it; be content to listen and be compassionate
Don’t be sad/angry/worry etc.
Be strong.
Don’t cry, it will be okay.
You must be feeling so _____;
This must be so _____.
(Instead ASK how someone is feeling)
LISTEN
&
BE PRESENT
When all else fails…
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1 . W HI C H O F T HE F O L L O W I N G G RI E F RE AC T I O N S O F AN E L DE RL Y W O M AN W HO HAS L O S T HE R HU S BAN D O F 4 0 Y E ARS T O L U N G C AN C E R W O U L D PRO M PT T HE HO S PI C E N U RS E T O S U G G E S T C O U N S E L I N G ?
Post -Test Questions
Post -Test Questions
a. She takes out 40 years of photographs albums and wants to review her
marriage and life of her deceased husband with the hospice nurse.
b. She refuses to let her sister and brother-in-law into her home anymore,
blaming them for buying her husband cigarettes “all those years.”
c. She plans her husband’s funeral by herself, listens to all his favorite
classical music pieces, and choose passages from his Bible.
d. She delegates all the responsibility for the funeral and disposition of her
husband’s belongings to the children.
2 . O N E Y E A R A F T E R T H E D E A T H O F H E R H U S B A N D , M R S . E L Y S T I L L C R I E S , H A S D I F F I C U L T Y C O N C E N T R A T I N G , A V O I D S A C T I V I T I E S , A N D R A R E L Y G O E S O U T W I T H F R I E N D S . A S P A R T O F B E R E A V E M E N T C O U N S E L I N G , Y O U C O N C L U D E W H I C H O F
T H E F O L L O W I N G ?
Post –Test Questions: Post-Test Question
a. This is a normal grief reaction. She could benefit from
being seen more often.
b. This is an example of a post-traumatic stress
disorder.
c. Acute grief can last beyond a year, but Mrs. Ely could
benefit from a support group.
d. Grieving beyond a year is often associated with
unresolved guilt about the death of a loved one.
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M O L L Y B U M P U S , R N , A R N P , A C H P M
P A L L I A T I V E C A R E / S U P P O R T I V E C A R E
V I R G I N I A M A S O N
M O L L Y . B U M P U S @ V M M C . O R G
Thank you!
Resources & References
Center to Advance Palliative Care www.capc.org
Hospice and Palliative Nurses Association Hpna.org
National Hospice & Palliative Care Organization www.nhpco.org
Caring Connections www.caringinfo.org
Evergreen Hospice & Providence Hospice Evergreenhospital.org providence.org
Resources & References
Jaclyn Yoong, MBBS, FRACP; Elyse R. Park, PhD, MPH; Joseph A. Greer, PhD; Vicki A. Jackson, MD, MPH; Emily R. Gallagher, RN; William F. Pirl, MD, MPH; Anthony L. Back, MD; Jennifer S. Temel, MD . Early Palliative Care in Advanced Lung Cancer: A Qualitative Study. JAMA Intern Med. Published online January 28, 2013. doi:10.1001/jamainternmed.2013.1874
Walsh, Declan (2009). Palliative Medicine. Philadelphia, PA; Saunders/Elsevier.
R. Sean Morrison, MD; Joan D. Penrod, PhD; J. Brian Cassel, PhD; Melissa Caust-Ellenbogen, MS; Ann Litke, MFA; Lynn Spragens, MBA; Diane E.
Meier, MD;Cost Savings Associated with US Hospital Palliative Care Consultation Programs. Arch Intern Med. 2008;168(16):1783-1790
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