Anne Coscarelli, PhD

Founding Director S

imm

s/Mann –

UC

LA Center for Integrative O

ncology, D

arcie Denkert N

otkin Director of P

sychosocial Oncology C

areA

djunct Professor of M

edicine, David G

effen School of M

edicine at UC

LA

Psychologist in P

ractice in Westw

ood and Hom

e Visits 310 452-4152

Thinking about End of Life: Are you Prepared?

May 7, 2018

Conflict of Interest D

isclosuresN

one

How

many of you?

•M

ade plans for your worldly goods, financial resources,

precious objects, e.g., made a w

ill or estate plan?•

Know your goals, values and w

ishes for end of life care?•

Would w

ant aid-in-dying if you had a terminal disease

with a life expectancy of 6 m

onths or less?•

Nam

ed some to speak for you and m

ake decisions?

How

many of you?

•C

ompleted a w

ritten and witnessed advance directive?

•R

eviewed it in the last few

years?•

Discussed w

ith your physician? •

Filed in your medical chart?

•D

iscussed with your healthcare pow

er of attorney?•

Discussed w

ith family and friends?

•C

reated an ethical will or legacy to hold the treasure

trove of your hard won w

isdom?

Why this discussion?

Percent of P

eople “D

eath Is Not O

ptional”

0 10 20 30 40 50 60 70 80 90100

19001920

19401960

19802000

2010

Men

Wom

enAll People Com

bined

Are We Living or Are W

e Dying?

LivingLiving

BirthDeath

Living LivingLiving

&

Dying

Living&

Dying

BirthDeath

Living&

Dying

Living&

Dying

Fun Facts

•90%

of people say that talking with their loved

ones about end of life care is important

But

•27%

have actually done so

Source: The Conversation Project 2013

Fun Facts

•60%

of people say that making sure their

family is not burdened by tough decision is

extremely im

portantBut

•56%

have not comm

unicated their end of life w

ishes

Source: Survey of California by the C

alifornia H

ealthCare Foundation (2012)

Fun Facts

•80%

of people say that if seriously ill, they w

ould want to talk to their doctor about

wishes for m

edical treatment tow

ard the end of their life

But

•7%

report having had this conversation with

their doctor

Source: Survey of California by the C

alifornia H

ealthCare Foundation (2012)

Fun Facts

•82%

of people say it’s important to put their

wishes in w

ritingBut

•23%

have actually done it

Source: Survey of California by the C

alifornia H

ealthCare Foundation (2012)

Advance Care Planning

•The process of com

munication

between

–P

atient–

Family

–C

linicians

•To foster understanding about illness an prognosis in order to clarify–

Treatment preferences

–Identify a surrogate

–D

evelop goals for care near end of life

Advance Care Planning

•Like a free insurance policy to help ensure your end of life is w

hat you want it to be

and•

To make certain that those w

ho might have

to speak on your behalf understand your –

Values–

Wishes

–Desires

Medical Treatm

entRequires M

any Choices

Com

munication is C

ritical

Medical Care is Guided by

Comm

unication•

Understanding one’s m

edical condition•

Understanding possible disease course and

range of prognosis•

Understanding w

hat sort of choices might

be made

•Thinking about the future

Questions

•W

hat is important to m

e?–

What do I w

ant to accomplish?

–W

hat do I want to happen

–W

hat do I want to avoid?

Questions about Future M

edical Care•

Would others know

what choices I w

ant to be made

if I were too sick to m

ake decisions?•

Who should be involved in m

aking decisions for me if

I cannot? •

If I discuss my w

ishes and write them

down, w

ill the m

edical care system know

what I w

ant and do it?

If Advance Care Planning Happens…•

People are more likely to receive the treatm

ents that they w

ant at the end of life•

Family m

embers have less stress and anxiety

during decision making and afterw

ard

How Advance Care Planning

fits into care decisions•

Participating in advance care planning…–

does not mean aim

ing for less aggressive treatment

–does not indicate an unw

illingness to enroll in a clinical trial

•But it does m

ean confronting the future and planning ahead–

so that treatments are fine tuned to m

atch your goals–

so that decisions made by others reflect your

prefereces–

so that decision making is m

ore comfortable for fam

ily

How to do Advance Care Planning: It’s

a Process

•Conversation w

ith your family and your

doctor(s)•

Specify who should talk for you if you

cannot•

Discuss what you w

ould want m

edical care to achieve

•Com

plete an advance directive

Advance Care Planning:W

hat to talk about?

•Future health states

•Levels of m

edical intervention

•Treatm

ents

Your Values and Goals•

Your healthcare team w

ill use medical

treatments to try to achieve your goals.

When people are seriously ill, m

any people think about treatm

ent goals in term

s of how they are w

illing to live.

I would not w

ant medical treatm

ents to try to keep m

e alive if I could no longer:�

live without being perm

anently hooked up to a breathing m

achine �

recognize family and friends

�talk to fam

ily and friends �

feed, bathe or take care of myself live

without severe pain or discom

fort think w

ell enough to make everyday decisions

�O

ther: ____________________________

OR�

I’m not sure

None of the above apply. M

y life is always

worth living, no m

atter how sick I am

.

AND

�I’m

not sure Som

etimes w

hen a person is very sick, life-support treatm

ents are used while the

healthcare team tries to help the person

get better. These treatments m

ay include CPR, a breathing tube or dialysis. Considering the statem

ents that you chose above, w

ould you want to receive life-

support treatments:

Choose One

�N

ever, under any circumstances

�O

nly if the chances are high of surviving to live in a w

ay acceptable to me

�If the chances are at least m

oderate of surviving to live in a w

ay acceptable to me

�Even if the chances are low

of surviving to live in a w

ay acceptable to me

�I w

ould want m

y healthcare agent to decide this for m

e, if needed

•If you have w

ishes or thoughts about receiving or not receiving life-support treatm

ents like CPR, a breathing tube, dialysis, feeding tube or other treatm

ents, such as blood transfusions, w

rite them here. These w

ishes w

ill be used as healthcare instructions to your healthcare agent.

•Please w

rite any other beliefs or values that you w

ould want your healthcare agent to

know if you becom

e unable to speak for yourself.

•Is there anything you w

ant your healthcare team

to know about your religion or

spirituality?

•Is there a religious/spiritual leader from

the com

munity you w

ant to be involved?(please provide contact inform

ation)

If I am so ill that I w

ill not recover, I would

prefer to die, if possible:(Choose one or m

ore of the following options)

�At hom

e under the care of hospice �

In the hospital �

In a skilled nursing facility �

Not sure, m

y healthcare agent can decide this�

Where I die is not im

portant to me

Choosing your healthcare agent

•A healthcare agent is the person you choose to m

ake medical decisions for you w

hen you can no longer m

ake them for yourself.

•This m

ay be the person who cares the m

ost about you, the person you are closest to, or the person you feel w

ill fulfill your wishes.

•You w

ill appoint your healthcare agent in this advance directive.

Role of a healthcare agent

•Your healthcare agent w

ill be able to make

nearly any medical decision that you could

make for yourself.

Role of a healthcare agent

•Your healthcare agent w

ill be able to: •

speak with your healthcare team

about your condition and treatm

ent options •

choose healthcare providers and the location of m

edical treatment

•review

your medical record and authorize its

release when needed

•accept or refuse m

edical treatments, including

artificial nutrition and hydration and CPR

Role of a healthcare agent

•decide about tissue and organ donation and autopsy

•decide about care for your body after death

Who Should Be Healthcare Agent?

•legally able to serve as your agent (18 years old, not your healthcare provider or an em

ployee of your provider (except if he/shei s your spouse or a close relative)

•available w

hen needed and willing to m

ake decisions on your behalf

•com

fortable asking questions of your healthcare team

and able to make the

healthcare decisions you would w

ant

Nam

e Your Healthcare Agent•

Nam

e one person and a second one who can

also act•

Get your document notarized or have it

witnessed by tw

o people•

Your witnesses cannot be your healthcare

agent, healthcare provider, work for your

healthcare provider, or at the nursing home

where you live and one w

itness cannot be related in any w

ay or benefit financially

Additional Considerations

•O

rgan and tissue donationhttps://w

ww

.donatelifecalifornia.org/•

Body donationhttps://w

ww

.uclahealth.org/donatedbody/or call (310) 794-0372.

Resources You Can Google•

UCLA Healthcare Advance Directive

https://ww

w.uclahealth.org/advance-directive

•The Conversation Project

https://theconversationproject.org/

•Five W

isheshttps://agingw

ithdignity.org

•Coalition for Com

passionate Care for California

http://coalitionccc.org/

POLST

Physician Order for Life-Sustaining

Treatment

•U

sed when seriously

ill patients want m

ore control over their end-of-life and is portable and honored everyw

here•

Should be in addition to an Advance Healthcare Directive

•O

ften used for DNR

Clarification

And in the end“It’s not the years in your life that count. It’s the life in your years.”

Abraham Lincoln

California End of Life Option Act

Terminology

•Aid in D

ying Drugs

–N

ot lethal drugs, -drugs given at lethal doses

•Physician Assisted Suicide

•Physician Assisted D

eath•

Euthanasia –the ending of som

eone’s life who is

suffering-usually by another

"I do not know w

hat I would do if I w

ere dying in prolonged and excruciating pain. I am

certain, how

ever, that it would be a com

fort to be able to consider the options afforded by this bill."

California governor Jerry Brow

n in letter to the C

alifornia Assem

bly on signing the End of Life O

ption Act, October 5, 2015

Effective June 9, 2016

California E

nd of Life Option A

ct

California E

nd of Life Option A

ct

•Effective as of June 9, 2016

•C

apable adult suffering from a term

inal disease may

request a drug for aid-in-dying –

Specifies procedures and forms

•Prescribing an aid-in-dying drug is voluntary

•Prohibits –

contracts, life or health insurance affected by aid-in-dying–

health insurance company from

comm

unicating about aid-in-dying, unless asked

End of Life O

ption Act (cont.)

•Im

munity for persons present w

hen patient self-adm

inisters the aid-in-dying drug•

Felony charges for fraudulent requests, coercion•

No lethal injection, m

ercy killing or euthanasia•

Aid-in-dying is not suicide under the law•

Physician submits form

s to CD

PH after w

riting prescription and after death

•Annual review

and statistical report•

Law expires January 1, 2026

Experience w

ith the Oregon

Death w

ith Dignity A

ct

As of 2015 (18 years of experience with the law

):•

1,545 terminally ill patients had received prescriptions

(0.2% of all deaths in O

regon)•

991 (64%) of these patients ingested the prescribed

medications to hasten their death

•M

ain reason patients request aid-in-dying: Desire to

maintain control over their final days

•M

ost Com

mon D

iagnosis: Cancer

Experience w

ith the Oregon

Death w

ith Dignity A

ct

•1 in 6 term

inally ill patients talks with their fam

ily about aid-in-dying

•1 in 50 term

inally ill patients talks with their physician

about aid-in-dying•

1 in 425 terminally ill patients received aid-in-dying

medications

•1 in 640 term

inally ill patients ingested aid-in-dying m

edications

-Adapted from

Tolle SW, et al. C

haracteristics and proportion of dying O

regonians who personally consider physician-assisted

suicide. J Clin E

thics. 2004;15: 111-8.

States w

ith Aid-in-D

ying Laws

•O

regon 1997•

Washington 2009

•Verm

ont 2009•

Montana 2009

•C

alifornia 2016•

Colorado (D

ecember 2016)

•Approxim

ately 18% of the entire U

S population–

321 million in 2015

Who is an E

ligible Patient?

•Adult 18 years or older

•A C

alifornia resident•

Patient has a terminal illness

–an incurable and irreversible disease that, w

ithin the reasonable m

edical judgment of the Attending and C

onsultant physicians, w

ill result in death within 6 m

onths

•Patient has the capacity to m

ake aid-in-dying decision•

Patient able to self-administer aid-in-dying drug

Requirem

ents by Law•

Attending Physician–

Receives 2 oral request 15 days or greater separation

–W

ritten request on form that is w

itnessed–

Determ

ines eligibility–

Refers to C

onsulting Physician–

Explains all options–

Refers to M

ental Health Specialist if indication of “M

ental D

isorder”

•C

onsulting Physician–

Verifies diagnosis and eligibility, completes special form

•M

ental Health Specialist (If referral is m

ade)–

Assesses for capacity

Request for

Aid-in-D

ying

•C

DPH

Form

Final Attestation

Additional R

equirement: U

CLA

Policy

•The Act does not focus on ensuring best end of life care and is vague regarding assessing affective distress

•U

CLA Policy created a role to ensure greater attention

to end of life care and affective distress in patients and fam

ilies•

Clinical C

onsultant–

Patient must be referred to a C

linical Consultant

Finding One’s W

ay to Clarity

•C

onsidering the use of an aid-in-dying medication is a

major decision that includes a m

ulti-layered and complex

process —one that likely affects far m

ore than one person.

•Perhaps m

ore than any other major life decision, this

one is also infused with m

atters of moral, ethical and

spiritual values —values that one m

ay not even share w

ith those nearest and dearest to them.

Finding One’s W

ay to Clarity

•This is a tim

e for deep reflection and even deeper com

munication for all those concerned —

sorting out possibly com

peting values in order to arrive at the best choice for you. Please take that tim

e and venture into those conversations w

ith yourself and loved ones. That heartfelt truth-telling m

ay offer its own guidance and

clarity to each of you. It is our hope that by talking through this process —

potentially many tim

es and at different points in your treatm

ent and illness —and

thinking about all of the options available, you will

discover your best path.

Finding One’s W

ay to Clarity

•W

hat circumstances brought m

e to considering this option? •

What fears m

ight I be bringing to this decision-making process?

•W

hat expectations might I be bringing to this decision-m

aking process?•

Which values w

ould be primary to m

e in considering this option and making this

decision?•

Which of m

y values might be in conflict w

ith this decision?•

Whose values in addition to m

y own do I need to consider?

•If I exercise this option, w

hat might I gain and w

hat opportunities might I lose (e.g., for

healing, personal growth, relationship to others)?

•If I exercise this option, w

hat might m

y family gain and/or lose (e.g., tim

e with you,

opportunity to provide you with care, healing, conversations, personal grow

th, relationships)?

•C

an I offer loving allowance to m

yself and those around me to have conflicting

feelings and values?

Aid-in-D

ying or Not:

Other Issues to Plan

Legacy and or Ethical Will

•Legacies by definition are “som

ething transmitted by

or received from an ancestor or predecessor or from

the past”

•O

ften think about material legacies that w

ill be left to our children, our siblings, grandchildren, or friends.

•W

hat about legacies of your values and your philosophy of life --treasured gifts

•Ethical w

ills have their footings in Jewish traditions

whose roots stem

from early biblical tim

es and were

used to comm

unicate about the practice of religion

Legacy and or Ethical Will

•The m

ost important tools

–Your heart

–Your thoughts and feelings

–R

ecording them –

letters, stories, recordings–

Having som

ething to read and reread may be just w

hat your loved one needs.

–It is a w

ay that your loved ones maintain their relationship

with you.

Legacy and or Ethical Will

•W

hat I learned from m

y family

•W

hat I want you to know

about me

•W

hat I hope to have passed on to you•

My spiritual beliefs

•W

hy I love you•

My hopes and dream

s for you•

What I learned from

working

•W

hat I am grateful for

•W

hat I learned from m

y mistakes

•S

omething I learned from

my (parent, grandparent, children)

•S

omething I learned from

a teacher or spiritual leader

Legacy and or Ethical Will

•M

y favorite poems and songs

•M

y most significant m

emories from

my childhood

•M

y feelings when you w

ere born•

What I have learned from

raising you

Legacy and Ethical W

ills

Write a sentence expressing your values on topics such as:

•H

onesty

•In

tegrity

•Frie

ndship

•C

om

munic

atio

n

•Fam

ily

•R

ecreatio

n

•H

ealth

•Spir

itual o

r R

elig

ious B

elie

fs

•R

ais

ing C

hild

ren

•Politic

s

•C

ourage

•Love

•M

arria

ge

•W

hat I liv

e fo

r

•W

hat m

akes life

meanin

gfu

l

to m

e

In Preparation for the Process•

Whom

does he/she want present?

•W

ould he/she want to be held, caressed or touched?

•W

hat kind of atmosphere w

ould he/she want?

•Are there photos, special objects or anim

al companions he/she w

ould want nearby?

Particular flowers, candles, or scents?

•W

ould he/she prefer silence, or a particular piece of music played?

•W

ould he/she want a particular poem

or prayer read? •

Would he/she w

ant loved ones to reminisce and share stories as if it w

ere a party, or just carry on as if it w

ere an ordinary day? •

There are no right answers to any of these questions —

except what he or she w

ants.•

There are some additional things you need to know

:•

Is your loved one enrolled in hospice? Be sure to have the name and phone num

ber of the hospice available to you.

•H

as he/she signed the Final Attestation for an Aid-in-Dying D

rug to End My Life in a

Hum

ane and Dignified M

anner form 48 hours prior to ingesting the drug?

•W

hat is the name of the physician w

ho wrote the prescription? This attestation needs to

be returned to the physician, and the physician will then be able to sign the death

certificate.

Preparing for Your Ow

n Death:

Instructions and Essential Information

•Enrollm

ent in Hospice

•If N

ot Enrolled in Hospice

•W

ith Your Physician, Sign a POLST Form

and Indicate DN

R•

Once You H

ave Qualified for the End of Life O

ption Act-when to

fill•

You Must H

ave Ability to Ingest and Digest the M

edications•

Where C

an You Take the Aid-In Dying D

rug?•

Who should be Present at your D

eath?•

The Dying Process

•O

nce the Death O

ccurs•

Disposing of U

nused Medications

Who Should B

e Present At Your

Death?

•P

ersonal decision, someone com

fortable, peaceful and will not panic/call 911.

•W

ould you want to be held, caressed or touched?

•W

hat kind of atmosphere w

ould you want?

•A

re there photos, special objects or animal com

panions you would w

ant nearby?

•P

articular flowers, candles, or scents?

•W

ould you prefer silence, or a particular piece of music played?

•W

ould you want a particular poem

or prayer read?•

Would you w

ant loved ones to reminisce and share stories as if it w

ere a party, or just carry on as if it w

ere an ordinary day? •

There are no right answers to any of these questions —

except what you w

ould w

ant.•

Those attending will also need to help m

ake sure you stay awake and take the

medication quickly, and help you to sit upright for the first 20 m

inutes after you have taken the m

edication.

Final Thoughts •

If you might consider Aid-in-dying at som

e point in your life, begin conversations w

ith your physician–

Know

where he/she stands on this

–B

egins conversations around end of life care and goals and values•

Com

plete an Advance Care D

irective –

Set a date to have it com

pleted by–

Talk to your family and physicians

•M

ake End of Life and Death as im

portant as buying a new car, sex

education and all things important

–P

lan–

Talk–

Learn•

Think about your legacy –not just financial planning but for the

treasure trove of life experiences and hard won w

isdom–

Decide to com

mit to som

ething for those you love•

Rem

ember that death is not an option it is inevitable

–W

hat will you do to prepare

•Psychological Support & C

ounseling throughout Cancer Trajectory

–Individual, Fam

ily, Partner, C

hildren•

Assessm

ent, Problem

-solving, CB

T, psychoeducation–

Psychological/P

sychosocial Outreach and C

onsultation in Oncology C

linics•

Outpatient visits, infusion

•M

ind/body Techniques–

Mindfulness

–R

elaxation, Guided Im

agery, Progressive M

uscle Relaxation

•G

roups–

Psychological and Integrative

•Psychiatry Services for M

edication Evaluation•

Integrative Oncology Specialist

–N

utritional support –

Bioelectrical Im

pedance for Lean body Mass

–D

ietary Supplem

ents

Sim

ms/M

ann –U

CLA

Center for

Integrative Oncology

Sim

ms/M

ann –U

CLA

Center for

Integrative Oncology

•R

eflections Boutique–

Wigs, hats, scarves, lym

phedema garm

ents–

Selected dietary supplements and nutritional supports

•Spiritual care/support

•Lecture Series –

“Insights Into Cancer” M

onthly lectures

•R

eferrals to Resources

•N

ewsletter

•w

ww

.Simm

sMannC

enter.ucla.edu

Three Wishes

•C

ancer could be prevented•

Cancer could be cured for

everyone•

Cancer patients and their fam

ilies receive optim

al integrated m

edical, psychosocial, spiritual & psychiatric care throughout the continuum

of cancer treatment

and survivorship–

Simm

s/Mann -U

CLA C

enter for Integrative O

ncology

Thanks to theSim

ms/M

ann Advisory B

oard•

Jeff Dinkin, C

hair•

Cam

elia Kath

•Lauren G

eisler Fite•

Phillip G

onzales•

Sara H

urvitz, MD

•E

mily Lefkow

itz, PhD

•J. R

onald King

•Jo A

nn Meth

•R

ichard Miller

•R

ichard New

man

•A

llan Orenstein, M

D•

Saul R

osenzweig

•M

ary Saltzberg

•Teddy S

eraphineLeonard

•Victoria M

ann Sim

ms, P

hD•

Larry Spiegel

•Zev W

ainberg, MD

.•

Marjorie B

ach Walsh

•K

enneth Ziskin

For their support, allowing us to provide m

ost of our services to patients and families touched by

cancer without fees

Thanks to theSim

ms/M

ann Family Foundation

for their continued support and recognition of the needs of patients w

ith cancer and their fam

ily mem

bers