Having “The Talk”
Opening Conversations About Advance Care
Planning (It’s O.K. to talk about it!)
Agenda
Opening Conversations About Advance Care Planning
 Today’s opportunity
 Understanding the basics
 Palliative care
 Hospice care
 Starting the conversation
 Making a plan
 Q&A
Today’s opportunity
To increase awareness and understanding
about advance care planning and end-of-life
care so you are better able to calmly and
confidently participate in informed,
compassionate conversations about these
sensitive issues with your loved ones and
health care providers before the need arises.
Confusion and reluctance are common (But you are
doing yourself and your family a great honor)
Fast facts
Understanding the basics
100
90
90%
82%
80
80%
70
60
50
40
35%
30
27%
20
10
7%
0
90% say talking
with loved ones
about end-of-life
care is important,
but only 27% have
done so.
Source:
The Conversation Project
National Survey 2013
80% say that, if
82% say it is
they were
important to put
wishes about end- seriously ill, they
would want to
of-life care in
discuss end-of-life
writing, but in
Minnesota only care with a doctor,
35% have done so. although only 7%
have done so.
Source:
MN Behavioral Risk Factor
Surveillance System,
2014 Survey
Source:
Survey of Californians
by the California Healthcare
Foundation, 2012
The gap: Having “The Talk”
Understanding the basics
• Doctors and their patients both think having
these talks is important—however…
– Patients and their families think that if they have a
serious illness, their doctor will start the talk.
– Doctors say they will have these talks if their
patients bring up the topic first.
“Many people I talk to as part of my job think that death
predominantly happens in hospitals, in very clinical
settings, but I presume you chose home and planned this
in some detail. This is one of our aims in palliative care,
and your ability to achieve this may mean that others will
see it as an option they would like fulfilled.”
Palliative care specialist, Dr. Mark Taubert, in an open letter to David Bowie upon his
death, January 2016
6
Palliative care (Did someone say “comfort care?” That
sounds O.K.)
• Both a philosophy of care and a highly
organized system for delivering care…
• …with a goal of assuring that each person
experiences the best quality of life
throughout the illness episode, concurrent
with life-prolonging care.
• Short definition: Care for patients and their
families, provided by a health care team,
that improves quality of life during a serious
illness.
7
Pillars of palliative care
Understanding the basics
• Pain and symptom management.
• Psychosocial and spiritual support for the
patient and the family.
• Information and support to make decisions
that reflect goals and values.
• Continuity of care (your trusted doctors and
caregivers will be involved).
“Some people mistakenly believe that palliative care is
only for patients who are incurably ill. The goal of
palliative care is to provide relief from symptoms,
and stress of a serious illness, whatever the
diagnosis.”
Raymond Yung, M.D. chief of the Division of Geriatric and Palliative Medicine
in the University of Michigan Medical School
Where is palliative care provided? (Where the patient
is safe and comfortable!)
•
•
•
•
•
•
Hospital
Home
Loved one’s home
Nursing homes
Assisted living
Hospice care center
9
Who does palliative care help?
Understanding the basics
• Those who have serious and/or lifelimiting illness, for example:
– Chronic disease(s)
– Cancer
– Frail elderly
“Medicine has triumphed in modern times,
transforming the dangers of childbirth, injury and
disease from harrowing to manageable. But when
it comes to the inescapable realities of aging and
death, what medicine can do often runs counter to
what it should.”
Atul Gawande, M.D.
What is hospice care?
Understanding the basics
Palliative care is not the same as hospice
• Hospice cares for people with a six-month life
expectancy based on the course of
their disease.
• Patients receiving hospice care are no longer
receiving curative treatment.
• Care is often delivered at home, but can also
be delivered in facilities.
“In the end, it's not the years in your life that
count. It's the life in your years.”
Abraham Lincoln
Hospice philosophy
Understanding the basics
Hospice embraces six core concepts:
– Death is a natural part of life. (Human have a
100% mortality rate!) When death is inevitable,
hospice will neither seek to hasten nor
postpone it.
– Hospice care establishes pain and symptom
control as an appropriate clinical goal.
– Hospice recognizes death as a spiritual and
emotional, as well as physical, experience.
– Patients and their families are a unit of care.
– Bereavement (grief) care is critical to
supporting family members and their friends.
– Hospice care is made available by most
hospices, regardless of the ability to pay.
Advance care planning
Understanding the basics
What it is:
Advance Care Planning is a process focusing around
conversations about health care choices for the future.
Why it matters:
Any one of us could be in a situation at any time where we
are unable to speak for ourselves or make choices about
health care. Your doctors and loved ones can’t follow your
wishes if they don’t know what they are.
How to begin:
Resources are available online, through many health care
providers, faith centers, and other organizations (see slide
18).
The Conversation Project offers a free “Welcome to the
Conversation” starter kit.
Advance care planning: Components
Advance Care Planning:
A conversation process every
adult should have.
Advance Health Care
Directive:
A written document all adults
age 18 and over should
complete after contemplation
and discussion.
Polst (Physician Orders for
Life Sustaining Treatment):
A specific medical order
written for seriously ill people
meeting specific criteria.
Advance care planning: Three questions
Starting the conversation
1
2
3
Who would you want making
decisions for you if you were unable
to make them yourself?
What would be the goals of
treatment if you permanently lost
the ability to meaningfully know who
you were, who you were with, or
where you were?
Do you have any spiritual, personal
or cultural views that would affect
treatment choices?
Advance care planning:
Five things to consider when choosing an agent
1
Do you trust this person to make tough
decisions?
2
Will this person honor your wishes even if
they do not agree with them?
3
Is this person emotionally strong enough to
make choices at a difficult time?
4
Can this person stand up for you if family
members disagree?
5
Is this person nearby and available in the
event of an emergency?
Advance care planning: Goals of care
1
What gives meaning, or brings
quality, to your life right now?
2
What worries or fears do you have
about aging, or about your health?
3
What helps you get through tough
times or stressful situations?
Trusted resources
•
•
•
•
•
•
Honoring Choices MN (honoringchoices.org)
Minnesota Network of Hospice and Palliative
Care (mnhpc.org)
National Hospice and Palliative Care
Organization (nhpco.org and caringinfo.org)
National Hospice Foundation
(nationalhospicefoundation.org)
The Conversation Project
(theconversationproject.org)
Dr. Atul Gawande (atulgawande.com): Being
Mortal: Medicine and What Matters in the End
18
Many thanks to:
for their support in providing content