Cyndi Cramer, BA, RN, OCN®, PCRN

Clinical Administrative Supervisor

Tampa General Hospital

& the TGH PCRN’s & PCRP’s:

Palliative Care Resource Nurses &

Palliative Care Resource Professionals

*All About Advance Directives

* There’s an Elephant in the Room….Terry Kettering

* People Used To Die At Home...

*Not so much anymore...

*1900 U.S. life expectancy: 47.3 years

*2003 U.S. life expectancy: 77.6 years*and it’s increasing...

*We’ve Changed...*Then:

*Comfort--Ease Suffering

*Infections main cause of death

*Average Life Expectancy: 50 years

*Caregiver: family

*Die at home

*Short time until death

*Now:

*Cure--at all costs

*Chronic Illness main cause of death

*Average Life Expectancy: 80 yrs

*Caregiver: strangers

*Die in institution

*Prolonged time to death with ups & downs

* End Of Life Care In The Hospital

*Physicians are not making the grade*patient/family satisfaction

*“I Failed as a Doctor”

*It’s all about communication

Healing Hero Culture

*The Problem

Perceiving death as a personal defeat or professional failure despite it’s being a natural event, clinicians caring for patients at the close of life may feel lost in a foreign land…

Stephen McPhee

*Death and Dying in AmericaSUPPORT Study (1995--over 4,000

patients)– 47% of physicians were unaware if their

pt’s preferred a DNR order– Almost 1/3 of pts who wanted DNR order

but MD was unaware: Died Before Discharge!

– 46% of DNR orders were written 2 days before death

– 38% of patients spent 10 or more days in an ICU before dying

– 50% of the patients dying in the hospital experienced moderate or severe pain at least half of the time during the last 3 days of life

DNR = Do Not Resuscitate

*Kansas City Survey1996 and 2000

*3000 documents reviewed at one hospital

*10% were sufficiently written to give clear instructions

*27-36% of advance directives completed

*48-59% on chart

*There is a disparity between the way people die & the way they want to die

*Fears

*Pain, Burden, Prolonged Death, Dependence, Other Symptoms

* Patient/family perspective

*Fears:

*Abandonment, Role Changes, $$

The Way I Wish Dad Died...

The Way Dad Actually Died...

…Mother Theresa

* In 3rd world countries--people die with their hand held and their pain managed. In the “Modern World”--people die alone, in pain, and with technology in abundance….

*It’s The Technology Age!

*We are morally obligated to “do everything we can”…

Physicians & Nurses are uncertain whether they are extending life or postponing death.

D Callahan, The Troubled Dream of Life, NY, Touchstone, 1993

Indeed, it seems that the fear of death is being replaced by the fear of dying…

British Medical Journal (BMJ), editorial, 7/26/03

*So, What Is Palliative Care?*For anyone with a life limiting

illness

*Not just for those who are actively dying

*It’s all about Quality of Life & Symptom Management

*Discovering your personal goals

*Difficult conversations with expert advice

*Still can elect to receive aggressive interventions if you wish

*It just depends on where you are in the course of your illness…

*And it’s all about what YOU want!

*Your goals for the way you deal with serious illness and, ultimately, end your life...

PhysicalFunctional AbilityStrength/Fatigue

Sleep & RestNauseaAppetite

ConstipationPain

PsychologicalAnxiety

DepressionEnjoyment/Leisure

Pain DistressHappiness

FearCognition/Attention

Quality of Life

SocialFinancial BurdenCaregiver Burden

Roles and RelationshipsAffection/Sexual Function

Appearance

SpiritualHope

SufferingMeaning of Pain

ReligiosityTranscendence

Adapted from Ferrell, et al. 1991

Benefit BurdenLonger life PainComfort SufferingRelationships Technology dependencyCommunity IsolationCommunication Immobilityetc. etc.

Optimal Balance of Benefits & Burdens

* Things We Cannot Cure…yet...

*Advanced Cancer--Terminal Cancer

*End Stage COPD

*End Stage CHF

*End stage AIDS

*End Stage Renal Failure

*End Stage Liver Failure

*End Stage Cardiomyopathy

*End Stage Alzheimer’s Disease

*Debility

*Some Things Cannot Be “Fixed”

*We cannot change the inevitability of death

*We cannot erase the anguish we feel when someone we love dies

*We all must face the fact that we too will die

*No matter how hard we try, the perfect words or gestures rarely, if ever, exist

*It is often enough to just be with the person

*And It’s All About YOU!!!

T he T eam

S ocial

W or ker

N utrit ion

Pharmacy

Cler gy

N ursing

(nursing

assistants)

A ncillar y S taff

(unit coordinator s,

housekeeping,

volunteer s)

T herapists

(PT , RT , O T ,

M usic, A r t,

CA M )

I nter disciplinary

M edical

T eam

PCP

(FP, GP, N P, PA

I nter nal M ed)

Consult ing

S pecialists

M ult idisciplinary

M edical

T eam

I mmediate

Family or

S ignifi cantO th er

E xtended

Family

Fr iends

S upport

Gr oups,

Religion

S upport

S ystem

T H E PA T I EN TL e a de r o f

th e T e am

*What Is An Advance Directive?

“A witnessed document (or oral statement) in which a competent patient makes health care

choices that take effect in the event the patient loses decisional capacity”

TGH Policy

*Living Will

*Power of Attorney for Healthcare

*Assessment of Capacity

• Capacity is distinguished from competence• Competence is

a legal term

• Lack of capacity

* 1990: Federal Patient Self-Determination Act

• Medicare & Medicaid Providers Required To Inform Patients:• Right to accept or refuse care

• Right to Advance Directive• can use own

• Understand patient wishes• Protect choices of patient when decisionally incapacitated

*Forms & Laws Differ By State

*http://www.caringinfo.org/stateaddownload

*http://www.nlm.nih.gov/medlineplus/advancedirectives.html

*5 Wishes

•Aging with Dignity: www.agingwithdignity.org

•$5 to fivewishes@aol.com (888) 594-7437 or (888) 5-Wishes

*Project Grace

•www.ProjectGrace.org

*5 Wishes

My Wish For:

*The Person I Want To Make Care Decisions For Me When I Can’t

*The Kind of Medical Treatment I Want or Don’t Want

*How Comfortable I Want To Be

*How I Want People To Treat Me

*What I Want My Loved Ones To Know

Aging with Dignity: www.agingwithdignity.org

$5 to fivewishes@aol.com (888) 594-7437 or (888) 5-Wishes

*Project Grace

Guidelines for Resuscitation

And Care at End-of-life

*Treatment Choices

*little or no chance of recovery

*Health Care Surrogate Choice

CPR End Stage Disease

Life Support Permanent Unconscious State

Surgery, Blood, Permanent Confusion

Antibiotics, Labs etc .

Tube Feeding Total Dependence

* And You Can Change Your Mind!!

*This isn’t written in blood!

*Your health and your goals can change over time--you can always change your Advance Directive

*And don’t worry about your doctor trying to hurry you along--it’s more likely the opposite...

*Who Makes Your Decisions If You Haven’t Decided?

*Substitute Decision Maker

*patient surrogate

*legal guardian

*spouse

*adult child or majority of children

*parent (comes first if child)

*adult sibling or majority of siblings

*adult relative

*close personal friend (affidavit)

*physician (2)

*What Is A DNR/DNRO?

*DNR: Form signed by your physician telling healthcare personnel at an institution not to perform CPR or perform other extraordinary measures

*DNRO: State of Florida DNR form recognized & honored throughout the state

Do NotAttempt

Resuscitation

ComfortMeasures

Only

Allow NaturalDeath

Do NotResuscitate

* Doc, I Want You To “Do Everything”!

*Everything includes:

*repeated or prolonged CPR, ventilator, multiple procedures & tests, dialysis, implanted defibrillators, decreased pain medications & sedation...

*But what is “everything”?

*92% of patients reported getting their medical information from television!

*On ER, 75% of people survive CPR & 67% of these are discharged from hospital

*In real life, app. 1.8 - 5.4% survive to leave the hospital!!

University of Arizona Sarver Heart Center Study,JAMA, 2008

* Research

*Canadian 2006 study: *In hospital witnessed arrests--46% successfully

resuscitated--22% survived to be discharged

* In hospital unwitnessed arrests--21% successfully resuscitated--1 in 104 survived to be discharged1 in 7 discharged can no longer live independently due to

brain damage

Peter Brindley, MD, University of Alberta Hospital, Edmonton, Canada, Canadian

Medical Association Journal. 2006

AED Doubles Survival

*A Peaceful Death

*Alleviate Suffering

*Achieve Goals of Patient & Family

*The Gift of Time

*Life Review

*Enhance Quality of Life

*Dignity

Focus of Hope Changes

A Final Gift of Love...

*Maintain a Realistic Perspective

There is no right way to die*Crisis & difficulties arise along with unexpected &

profound joy

*Flexibility is essential

*Stay focused on your Goals of Care

YOUR Goals!!

Not your Doctors, Nurses,

Family, Friends...

*Know the Lingo

*Withdraw Care

*We can’t do anything more

*Stop all treatments

*Comfort Measures Only (CMO)

*We can do many things--all for comfort & quality of life!

*YOUR goals determine treatments & interventions

*Who Should Be Your Surrogate?

*The person that loves you the most may not be able to let you go...

* Families Are Torn Apart Over Disagreements Over End of Life Issues

*The sad case of Terri Schiavo

* Where Should You Keep Your Advanced Directive?

*Make Multiple Copies:

*Your Surrogate

*Family Members

*Physician

*Spiritual Leader

*The Freezer

*The Glove Box/Your Wallet or Purse

*Give copies to any facility you go to for medical care...

*Few Want to End Their Lives Like This:

next...

Or feel like they should have done something different for their loved one...

* This Is What Most of Us Want...

* Do You…??

*Do you have an Advanced Directive? *Your relatives?

*How did you pick your surrogate?

*Where do you keep it?

*Have you told your surrogate & given them a copy?

*Have you told your family about your wishes?

Science says: 'We must live’, and seeks the means of prolonging, increasing, facilitating, and amplifying life,

of making it tolerable and acceptable,

Wisdom says: 'We must die’, and seeks how to make us die well.

M. De Unamund

*Please Talk About It...

*If you don’t, you or your loved one may be left

*Alone

*In a room

*With an Elephant...

*Questions or Comments?