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Sharing Your Wishes™
Enhanced Pre-Need Planning
Helping Families with Health Care Directives
© 2008. Human Services Coalition of Tompkins County. All rights reserved.
Give Them Peace of Mind, Not Tough Choices
Sharing Your Wishes How Advance Care Planning provides Peace of Mind
For Older Clients and their Families
Finger Lakes Funeral Directors AssociationMay 8, 2008, Ithaca, New York
Presentation by:
Lisa Kendall, Family and Children’s Services, Home Care Program, Caregiver Counseling and Respite Services, Ithaca, NY
Beverly Hammons, SYW Coordinator
Supported by the Human Services Coalition of Tompkins County, Ithaca, New York
Overview
Why Advance Directives are necessary
Various legal documents and statutory requirements
Sharing Your Wishes Planning Guide
Advance Directives as a part of Pre-need Planning Services
Note: Advance Health Care Planning is also referred to as Advance Care Planning (ACP).
Why advance care planningis important: Most people will die while under the care of
health professionals after experiencing a chronic or life-threatening illness.
Up to 50% of persons cannot make their own decisions when they are near death.
Health professionals typically treat when uncertain of a patient’s wishes.
Without discussion, loved ones have a significant chance of not knowing a person’s views.
©GLMF, Gundersen Lutheran Medical Foundation
“Cancer” Trajectory, Diagnosis to Death
TimeOnset of incurable cancer-- Often a few years, but decline usually < 2 months
Fun
ctio
n
Death
High
Low
Cancer
Possible hospice enrollment
15% of deaths Joanne Lynne, The Washington Home, Center for Palliative Care Studies
Organ System Failure Trajectory
Fun
ctio
n
Death
High
Low
(mostly heart and lung failure)
Begin to use hospital often, self-care becomes difficult
~ 2-5 years, but death usually seems “sudden”
Time
20% of deaths
Dementia/Frailty Trajectory
Time Quite variable -up to 6-8 years
Death
High
Low
Onset could be deficits in ADL, speech, ambulation
Function
Over 50% of deaths
Do they really need a document?
Isn’t just talking enough?
Won’t the doctors just ask my closest relative?
Current Practice
Hospitals, nursing homes, home care agencies and other providers are mandated to ask if a patient has a health care proxy.
Doctors discuss with certain patients.
Hospicare and Palliative Care Services may require advance directives.
American Hospital Association site: www.putitinwriting.org
Choices???
How the Majority of
Americans Die
How the Majority of
Americans Wish to Die
Over 75% 80%Patricia Bomba, M.D. Vice President & Medical Director, Geriatrics, Lifetime HealthCare Companies
Advance Health Care Planning
“A process of assisting individuals in understanding, reflecting and discussing preferences for future medical care, including end-of-life decisions.”
The Advance Directive is the legal document.
It is only one step in the ACP process.
Different Roles People involved include
Different professionals have different roles in helping individuals with advance care planning.
Anyone who works with seniors………….
Home Care
Lawyers*
Faith Leaders Funeral Directors
Doctors
Office for the Aging
Nurses
Individual
*Note that an attorney is not needed to complete Advance Directive documents
Capacity
A clinical term recognized by law
The ability of a patient to make informed decisions as determined by clinical assessment
*GLMF
Four Steps to Advance Health Care Planning
(contained in the SYW Planning Guide)
1) Think about what’s important to you.
2) Select an “agent” to speak for you.
3) Talk about your wishes.
4) Put your choices in writing using the New York State Health Care Proxy form.
IndividualValues and Beliefs
SYW encourages people to speak with:Health Care AgentFamilySpiritual AdvisorPhysician About Their
ValuesPersonal beliefs
Spiritual beliefsHopes and wishes
What makes life worth living? What really matters?
True or False?
Advance Directives may be in the form of
a personal letter…
Types of Advance Directives Legal in New York State
Health Care Proxy Form (most common)
Do Not Resuscitate forms
a. in-hospital/nursing home
b. out-of-hospital MOLST (Medical Orders for Life-Sustaining Treatment) not widely used
Clear and Convincing Evidence (a judge would decide)Living will form Physician’s notePersonal letter Other evidence
Common misperceptions
Senior counselor:
“Some people think that being the health care
proxy leads to the money. They confuse
living will with a will for distributing assets.
Some health care proxies ask for financial
information because they think that being the
HCP entitles them to it.”
Clarifying Confusing Language
Will
Power of attorney
Legal guardian
Living will
Power of attorney for health care
Health care agent, proxy, or representative
Death proxy
Recent NYS Form
Appointment of Agent to Control the Disposition of Remains
(Section 4201 of the NYS Public Health Law)
We are suggesting that people check with their funeral director for more information.
Basic Standards for Communication
Written plans are best.
Recommend the document that best meets the needs of the individual.
Strive for clarity, accuracy and completeness.
©GLMF, Gundersen Lutheran Medical Foundation
Nutrition and Hydration –Need to specify on form
People MUST indicate on the form that they have discussed their wishes about artificial nutrition and hydration with their agent.
If this is not documented, the agent cannot decide for the individual and artificial methods (tubes, etc.) are likely to be used.
The form in the SYW Planning Guide already has this printed on it; people can cross this out if they prefer.
"Won't doctors just do what the family wants?"
Signatures for Health Care Proxy
Individual must sign and date the form.
Two witnesses must also sign and date. Witnesses must be 18 or over Cannot be a physician who is treating the patient
(unless the physician is a relative.) Cannot be the person who is appointed as agent
Practical Issues: Accessibility
Keep a copy Provide a copy to:
Health Care Agent Alternate Agent, if designated Family members / loved ones Primary care physician Other health care providers Primary hospital Faith leader / spiritual advisor
Hospital admissions coordinator:
“If it falls apart at the last moment because
you can’t find the form, all the planning
doesn’t matter.
If the paper is not there when needed,
lawsuits are possible either way.”
On-line Registry for advance directives
In New York State some counties are participating in this free, secure, on-line program; check to see if your county participates.
AssuringYourWishes.org
Storage by Hospitals
Some hospitals provide electronic storage of records; check with your local institutions.
In Tompkins County:
Cayuga Medical Center at Ithaca Scans forms into electronic medical record(Even if not a CMC patient)
Review and UpdatePeriodically
Major life events
Newly diagnosed chronic
illness
Advancing chronic illness
After complicated life-
sustaining treatments
If agent no longer available to make decisions
Update - continued
To ensure continued accuracy
If you move – every state recognizes some form of advance directive though terminology may differ from state to state.
When wishes change
You can always alter your proxy and living will documents at any time.
Funeral Directors
can help!
Hospices
For more info and to find the Hospice nearest you:
Hospice and Palliative Care Association
of New York State
www.hpcanys.org
Tompkins County: Hospicare and Palliative Care Services
607-272-0212
www.hospicare.org
Online Resources
www.agingwithdignity.org Five Wishes
www.compassionandsupport.org
www.putitinwriting.org American Hospital Assoc.
www.nhpco.org National Hospice and Palliative Care Organization
(Many focus on just end-of-life care, rather than the longer last-phase-of-life care).
Legal perspective
NYS Attorney General Guide
www.oag.state.ny.us/health/health_care.html
American Bar Association Consumer’s Tool Kit www.abanet.org/aging/toolkit/home.html
Other States?
For state-specific documents, go to www.caringinfo.org
Maintained by
Caring Connections,
a program of the
National Hospice and Palliative Care Organization
Sharing Your Wishes™The Community Health Foundation of
Western and Central New York has an EXCELLENT website:
www.sharingyourwishes.org
It includes: Downloadable materials for clients
(Planning Guide, Information Booklet, Note Card for Agent)
SYW Toolkit for organizations interested in promoting advance health care planning in their community.
Sharing Your Wishes™ Give them Peace of Mind, not Tough Choices.
Copyright, 2008. Human Services Coalition of Tompkins County, Inc. All rights reserved.
100 W. Seneca Street, Ithaca, NY 14850(607) [email protected]
The People Behind the PackageEducators Lisa Kendall, LCSW, CSW-G, Family and Children’s Services, Home Care Program, Caregiver Counseling and Respite Services, Ithaca, NY Marilyn Kinner, BS, Ithaca College Gerontology Institute Christine Klotz, MHA, Community Health Foundation of Western and Central NY Tom DeLoughry, EdD, Niagara Caregivers Network, Health Association of
Niagara County, Inc, NY
Human Services Coalition staff Betty Falcão, MPH, Director, Health Planning Council Beverly Hammons, MPS, SYW Coordinator
Instructional Media Developer David M. Coleman, MyOnlineLearning.com, Owner
