cyndi cramer, ba, rn, ocn®, pcrn clinical administrative supervisor tampa general hospital &...
TRANSCRIPT
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 [email protected] (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 [email protected] (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?