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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