for posting advance care planning and end of life 2018 · d ann –, e ucla 452-4152 ? 2018. s e?...
TRANSCRIPT
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