Sheila Grant, RN, BSN, CHPNVice President

Hospice & Palliative Care Network of Delaware

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

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

Can be VERY tough

What do common ways of dyinglook like?

Autonomy

Need consent for medical treatments, EXCEPT resuscitation

YOU!

Plan ahead

Have conversations with your loved ones

Write down your values and wishes

Living willPower of Attorney for Health Care

◦ (Durable Power of Attorney”)Other written documentation of your

wishes/valuesConversations with your loved ones

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

Will Living Will

May address:

CPRVentilatorArtificial Nutrition

& HydrationAntibioticsTransfusionsDialysisInvasive

ProceduresAnatomical Gifts

***May instruct YES or NO

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

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”

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

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.

DE

PA

NJ

MD

If you do more than 1, make sure they all agree

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.

(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

People's number one fear is public speaking.

Number two is death. Death is number two.

Does that sound right?”

So, if you go to

a funeral, you're better off in the casket than doing the eulogy.”

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.

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

What is most important to you?

What makes life worth living?

What would make living intolerable?

“A Living Will with Heart”

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

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?

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.

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.

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

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]

“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

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%

When hospice is suggested, families often say:

“We’re not ready for hospice.”

The MOST common survey response is “We wish we’d started hospice SOONER!”

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