"as you wish": advance care planning
DESCRIPTION
A slideshow that explains end of life decision making, including living wills, health care powers of attorney, and other helpful tools. Includes information on end of life laws in Delaware.TRANSCRIPT
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Sheila Grant, RN, BSN, CHPNVice President
Hospice & Palliative Care Network of Delaware
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19001900 20002000
Age at DeathAge at Death 46 Years46 Years 81 Years81 Years
Leading CausesLeading Causes
InfectionInfection
AccidentAccident
ChildbirthChildbirth
CancerCancer
Heart DiseaseHeart Disease
Stoke/DementiaStoke/Dementia
Disability before Disability before DeathDeath
Unusual Unusual
& Brief& Brief
On Average,On Average,
> 4 Years> 4 Years
CostsCosts Low & AffordableLow & Affordable Very High & Long Very High & Long PeriodsPeriods
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88% say they want to die at home
20% actually die at home
Source: Teno, JM et al. Family perspectives on end of life care at the last place of care. JAMA. 2004;291:88-93
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Can be VERY tough
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What do common ways of dyinglook like?
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Autonomy
Need consent for medical treatments, EXCEPT resuscitation
YOU!
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Plan ahead
Have conversations with your loved ones
Write down your values and wishes
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Living willPower of Attorney for Health Care
◦ (Durable Power of Attorney”)Other written documentation of your
wishes/valuesConversations with your loved ones
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Living Wills (state specific)
POA for Health Care (usually part of LW)
Other documentation of your values and wishes (see ABA toolkit, Caring Conversations, Five Wishes)
Gawande Article
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Will Living Will
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May address:
CPRVentilatorArtificial Nutrition
& HydrationAntibioticsTransfusionsDialysisInvasive
ProceduresAnatomical Gifts
***May instruct YES or NO
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Allows you to name someone to make decisions for you, if you are unable to make them yourselfDoesn’t take effect UNTIL you are unable
(“springing”)Usually has space for 2 decision-makers, in
case one is unavailablePick the right person
Knows your wishes Strong advocate Available, willing
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Can act for you ONLY if you are UNABLE
TO MAKE DECISIONS for yourself.
MUST make decisions IN AGREEMENT WITH YOUR DESIRES as stated in your Living Will or as otherwise known to the agent.
“Substituted Judgement”, or if unknown“In the patient’s best interest”
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You do NOT need an attorney You do NOT need a notary in
DE/PA/NJ/MD You DO need two witnesses, not related
to you, who will not inherit from you Make copies and distribute
Family Physician POA’s Keep several copies yourself and take to
hospital or facility if you go Copies have the same force as an original
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Each state has a hierarchy of decision makers. In Delaware—
Spouse
Adult Child
Parent
Adult Sibling
Adult Grandchild
Adult Niece or Nephew
Guardian: Adult who has exhibited special care and concern—IF none of above are available AND if appointed by the court.
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DE
PA
NJ
MD
If you do more than 1, make sure they all agree
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Living Will
Only when a patient is
terminally ill or in a persistent
vegetative state
Medical POA
Whenever a patient is
incapable of making or
communicating a choice.
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(see handout)
Call and make pre-arrangements Talk to family members Leave written instructions in Living Will Leave written instructions with Funeral
Director If you use a hospice, inform them of
your wishes to be a donor—provide ph. # of agency
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People's number one fear is public speaking.
Number two is death. Death is number two.
Does that sound right?”
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So, if you go to
a funeral, you're better off in the casket than doing the eulogy.”
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Two fundamental facts ensure that the transition to death will remain difficult:
1. Medicine's inability to predict the future2. A widespread and deeply held desire not
to be dead
Garnering Support for Advance Care Planning Terri R. Fried, MD; Margaret Drickamer, MD
JAMA. 2010;303(3):269-270.
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engagewithgrace.orgThe One Slide
Project
1. On a scale of 1 to 5, where do you fall on this continuum?
2. If there were a choice, would you prefer to die at home, or in a hospital?
3. Could a loved one correctly describe how you’d like to be treated in the case of a terminal illness?
4. Is there someone you trust whom you’ve appointed to advocate on your behalf when the time is near?
5. Have you completed any of the following: written a living will, appointed a healthcare power of attorney, or completed an advanced directive?
1 2 3 4 5
Don't give up on me no matter what, try any proven and unproven
intervention possible
Let me die in my own bed, without any medical intervention
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What is most important to you?
What makes life worth living?
What would make living intolerable?
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“A Living Will with Heart”
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Specific treatments you want or don’t wantHow important comfort is to youHow you want to be treatedWhat you want your loved ones to knowAllows you to request hospice care
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Do you love to be outdoors? To be able to read or listen to music? To be aware of your surroundings? Seeing, tasting, touching?
What are your fears regarding the end of life? Would you want to be sedated if necessary to control your
pain, even if it makes you drowsy or puts you to sleep much of the time?
Would you want to have a hospice team or other palliative care (i.e., comfort care) available to you?
If you could plan it today, what would the last week of your life be like? For example… Where would you be? What would your environment be like? Who would be present? What would you be doing? What would you eat if you could eat?
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Are all good ways to think through, communicate, and document your values and wishes for care before you get sick.
BUT you cannot be sure they will be followed.
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Family disagrees with LW
Not all family members are “ready to let go”
Physician feels “we have to do something”, and family goes along
Cannot find LW/have not talked about it
Living will is unclear in present situation.
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Specialized care for people with serious illness and a limited life-expectancy ( 6 months or less).
Interdisciplinary team (Dr., RN, C.N.A., SW, Chap., Vol.)
Includes: visits, medications, medical equipment, 24/7 nurse for emergencies, 13 mos. bereavement
100% covered by M’care & most ins.—No one denied for financial reasons
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Hospice care neither shortens life, nor prolongs death. It provides comfort and quality of life.
A recent study showed hospice patients lived as long or longer than a matched group who chose aggressive care.
Study groups with with lung cancer, pancreatic cancer, and CHF lived the longest on hospice care.
[Journal of Pain and Symptom Management vol.33 no. 3 March 2007]
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“We’ve created a multitrillion-dollar edifice for dispensing the medical equivalent of lottery tickets—and have only the rudiments of a system to prepare patients for the near-certainty that those tickets will not win. Hope is not a plan, but hope is our plan.”
--The New Yorker, 8/2/10
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Cancer 41.3%Heart Disease 11.8%Debility 11.2%Dementia 10.1%Lung Disease 7.9%Stroke/Coma 3.8%Kidney Disease 2.6%Liver Disease 2.0%ALS 0.4%Other 8.4%
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When hospice is suggested, families often say:
“We’re not ready for hospice.”
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The MOST common survey response is “We wish we’d started hospice SOONER!”
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PLEASE . . . Think about your values and wishes for the
end of lifeDocumentHave a conversation with your loved ones
It’s may be difficult now, but it will save bigger difficulties later
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