Transcript Respecting ChoicesTM

Sharing Your Wishes:
Promoting Conversations about
Advanced Care Planning
ICGI Conference, 9/22/2005
Betty Falcão
Marilyn Kinner
Lisa Kendall
We can’t respect your choices
for future medical care……
unless we know what they are.
Gundersen/Lutheran, Wisconsin
Sharing Your Wishes
Community Health Foundation
of Western and Central New York
$70,000 for 2-years
- Increase our community capacity
for Advance Care Planning
- Encourage and support older adults
in actually doing ACP
Leadership
Long Term Care Committee
Health Planning Council,
Human Services Coalition of Tompkins County
Staff: Betty Falcão, Director, HPC
Beverly Hammons,
SYW Program Assistant, HPC
SYW Partners - initial
Cayuga Medical Center at Ithaca
County Office for the Aging
Family & Children’s Service, Home Health Care
Program
Finger Lakes Independence Center
Health Department of Tompkins County
Hospicare and Palliative Care Services
Ithaca College Gerontology Institute
Lifelong
Long Term Care Services
Our approach
Personal Stories
Public Stories
People’s Preferences
Patterns of Serious Illness
If you were terminally ill, where do you think you
would want to die?
Tompkins County Preferred (2001) and Actual (1999-2003)
80%
70%
Preference
60%
Actual
50%
40%
30%
20%
10%
0%
Home
Hospice
Hospital
Nursing Home
Other
Patterns of Serious Illness
Most of us will die after experiencing
a chronic life threatening illness;
less than 10% will die suddenly.
Not just care at the end of your life,
but health care decisions in the
last-phase-of-life.
“Cancer” Trajectory, Diagnosis to Death
High
Cancer
Function
Possible hospice
enrollment
Low
Onset of incurable cancer
Death
Time
-- Often a few years, but decline
usually < 2 months
15% of deaths
Joanne Lynne, The Washington Home, Center for Palliative Care Studies
Organ System Failure Trajectory
High
Function
(mostly heart and lung failure)
Low
Death
Begin to use hospital often,
self-care becomes difficult
Time
20% of deaths
~ 2-5 years, but death
usually seems
“sudden”
Dementia/Frailty Trajectory
High
Function
Low
Death
Onset could be deficits in ADL,
speech, ambulation
Time
Quite variable up to 6-8 years
Over 50% of deaths
Imagine If….Our Vision
A majority of frail elders in Tompkins County knew
what kind of last-phase-of-life care they wanted.
Were able to talk about this with their family members
and medical providers.
Had their wishes clearly expressed in a legal document.
The document was accessible and used to direct and
improve their medical care and quality of life during
their last years.
An Advance Directive is….
a plan indicating preferences for future
health care decisions if a person is unable
to make them for him/herself
From Advance Directives to
Advance Care Planning
A cultural change will be required
Organization & community effort
Involvement of multiple professionals
Commitment to learning new skills
and practices
Current Education of Health
Professionals about ACP
Focused on completion of advance
directives
No developed system to practice or work
No defined responsibilities or
competencies
Inadequate or conflicting teaching
resources
Little or no management or review of
practice
©GLMF
Advance Care Planning
“A process of assisting individuals in
understanding, reflecting and discussing
preferences for future medical care,
including end-of-life decisions.”
Skilled, trained facilitators working as an
interprofessional team
Advance Care Planning (ACP)
A process that includes:
Understanding
Reflecting
Discussing
Formulating a plan
©GLMF
Advance Care Planning
A process that takes into
account:
The person’s current health status
Values and goals
Sense of what is most important to
live well
©GLMF
Advance Care Planning is
successful when:
Future options are understood
Options are considered in light of the
person’s values and goals
Choices are discussed
A plan is formulated and supported
Surrogates and loved ones accept that
following the plan is a loving act
©GLMF
Advance Care Planning may
include:
Who would make decisions
Clarification of the surrogate’s authority
How decisions might be made
Why decisions should be make
When medical treatment should be
continued or forgone
What it would mean to live well
©GLMF
Making Choices:
Decisions should be guided by:
Determining the person’s goals…both
medical and non-medical
Considering the benefits and burdens for
the person of particular options or choices
©GLMF
Barriers to ACP
Avoidance of the subject
Lack of professional skill, training, and
confidence
Perceived lack of time
Lack of reimbursement
Belief it is not possible
©GLMF
Advance Care Planning:
Training Facilitators
WHO AND HOW
Community Volunteers
Organizational Staff
Full day or two half days of training
Prerequisite reading
TRAINING FORMAT
Lecture
Video
Discussion and story telling
Small group problem solving
Role play
Competency review
TRAINING CONTENT
Understanding the language,
concepts and tools.
An overview of law, medicine and
ethics.
Communicating the plan.
TRAINING CONTENT Continued
Decision making capacity
Introducing the ACP concept
Eliciting the person’s perspective
Strengthening the Healthcare
Surrogate
TRAINING CONTENT
CONTINUED
Discussions with different groups of
adults
Living Well
Problem solving scenarios
Facilitation role play
Creating the document
Sharing Your Wishes
Components
* Training
* Partner Organizations
* Materials
* Community Change
Referral Organizations
Medical Providers
Faith Community
Estate Planners (Legal and Financial)
Senior Groups
Employers
Human Service Agencies
Others
Referral Advocate Orgs
 Family & Children's Service
 Health Department of TC
 Long Term Care Services
 Others…….
Facilitating Orgs
Cayuga Medical Center at Ithaca
County Office for the Aging
Finger Lakes Independence Center
Hospicare and Palliative Care Services
Lifelong
Others………SNF’s
Central Registry
Cayuga Medical Center at Ithaca
Scanned into medical record
Paper file for non-patients
“Medical Safe Deposit box”
Share with
health care proxy, other family members, medical
providers, perhaps attorney…….
And also talk
Community Health Foundation
Grant funds
Materials
Training for coalition leaders
Measurement tools
Publicity materials and training
List serve to share among 6 coalitions
Other initiatives (Quality Improvement and
Health Leadership)
www.chfwcny.org
Foundation Materials
Planning Guide –includes NYS proxy
form and wallet card
Informational Booklet (longer)
Card for health care proxy
Poster
CHFWCNY - Six Coalitions
Give them
peace of mind –
not tough choices
Materials
Long Term Care Committee reviewed
NYS Dept. of Health, required
Excellus
NYS Attorney General
Respecting Choices
Five Wishes
National Hospice Association
Conversations before the Crisis
Others
Online Resources
www.agingwithdignity.org Five Wishes
www.excellusbcbs.com
www.lastactspartnership.org
www.putitinwriting.org Am. Hosp. Assoc.
www.nhpco.org Hospice
www.oag.state.ny.us/health/health_care.html
NYS Attorney General
***
Other States?
National Hospice and Palliative Care
Organization
Go to www.nhpco.org,
click on What's New,
scroll down and click on End of Life
Care: Advance Care Planning.
Promoting
Conversations
Talking about your wishes
With your proxy
With your parents
With your children
Making a difference?
 Agency partners
 Staff and levels of training
 Amount of materials distributed
 Conversations with clients/patients
 One-on-one facilitation meetings
 Health care proxies in the Central Registry
Improved Outcomes?
 Earlier referrals to Hospicare
 Admits to the ICU already have proxy
 Discussions between individuals and proxy
 Increased satisfaction of health care decisions
 Less stress for agency staff
 Higher percentage of place of deaths
following people’s preferences
What do you think?
What is already happening in your
community?
How might your agency promote
improved advance care planning?
Which community groups/employers
might be interested in materials?