Download Practical Guide to Advance Care Planning and Advance Directives

A Guide to Advance Care Planning
and Advance Directives
Making Your Health Care Wishes Known
When we honestly ask ourselves which persons in our lives mean
the most to us, we often find that it is those who, instead of giving
advice, solutions, or cures, have chosen to share our pain and touch
our wounds with a gentle and healing hand.
Those who can be silent with us in a moment of despair or
confusion, who can stay with us in an hour of grief and
bereavement, who tolerate the not-knowing, not curing, not healing,
and face with us the reality of our powerlessness, they are the ones
who care. – Henri Nouwen
We often take for granted that when medical decisions need to be made, we
will be able to make decisions for ourselves. Yet, many of us will be asked to
make medical decisions for our loved ones. Often family members say,
“I wish we would have talked about this,
so I would have known what [Mom] wanted.”
Talking about your health care wishes may not be easy, but it will help your
family understand what is important to you. It gives you a chance to share
your health care wishes with your family and your providers.
Having conversations and completing an advance directive is often called
Advance Care Planning. Advance Care Planning also helps you and your
family better understand your health care choices and prepare for the
decisions you may face as you live with illness.
The goals of Advance Care Planning are to
 Guide your health care in a way that fits with your
beliefs, values and goals.
 Make sure your wishes are followed even if you
are not able to speak for yourself.
 Support relationships between you, your family
and your health care providers.
 Lift the stress of difficult decision making on family or friends.
An important part of Advance Care Planning is writing an Advance
Directive. This document will help make your wishes known to your family
and health care providers.
Ministry Health Care and Columbia St. Mary’s offer this guide to help you
discuss your choices and write an Advance Directive. Take some time to
review this booklet, start conversations with your family and /or attend an
Advance Health Care Planning workshop.
What is an Advance Directive document?
An Advance Directive is written instructions that state your choices about
future health care decisions. These documents guide your physicians and
loved ones in the event you cannot make health care decisions for yourself.
An Advance Directive makes sure that your beliefs and wishes are known.
Types of Advance Directives documents:
Power of Attorney for Health Care:
 Allows you to pick one or more persons to make health care decisions
for you if you are unable to make those decisions for yourself. This
person is known as your health care agent.
 Offers guidance to your health care agent(s) and health care
providers(s) so they can best honor your wishes.
 Keeps you in charge of your health care decisions until you cannot
participate in decision making.
Living Will/Declaration to Physicians:
 States your preferences for care if you have a terminal condition or
you are in a persistent vegetative state.
 Gives instructions to health care providers only under those situations.
 Does not name another person to carry out your wishes.
Community DNR Order and Bracelet:
 A Do-Not-Resuscitate (DNR) order tells emergency medical
technicians (EMTs), first responders and emergency workers not to try
CPR if your heart or lungs stop working.
A Community DNR Bracelet must be:
o signed by the patient (or legal representative)
o signed by the doctor
o worn to show emergency staff that you do not want to be
resuscitated.
Why do I need an Advance Directive?
An Advance Directive makes your wishes clear to your family, friends and
health care providers. In Wisconsin and Minnesota, the law does not
automatically authorize a family member to make all health care decisions for
you. An Advance Directive gives your family the permission and guidance.
Can I change my mind later about my wishes?
You can change the documents at any time. You can make a simple change
such as a contact phone number by just changing the number on the form or
completing the Demographic Change Form provided by Ministry Health
Care.
If you want to change your health care agent or wishes it is best to do
one of the following:
 Create a new document as soon as possible.
 Discuss your changes with your agent.
 Verbally express your intent to revoke (cancel) the original
document in the presence of two witnesses.
 Tell your doctor and your agent(s).
 Destroy the previous document or have someone else do so in your
presence.
Who should be my Health Care Agent? Someone Who:
 Is willing. Be sure you have their okay before naming them.
 Knows you well, knows your wishes, values and beliefs
 Is able to speak for you. If your spouse is the same age or older, it may be
helpful to list another younger family member or friend.
 Is able to handle a stressful situation. Your agent will need to be assertive,
willing to ask questions and speak on your behalf.
 Is easy to reach, in order to help with planning or paperwork. They will
need to be available in person or by phone, fax or email.
 Can work with others. They may need work with other family members,
health care providers, caregivers and possibly financial representatives.
When does my agent start making decisions?
Your agent does not make decisions for you until you no longer can make
health care decisions for yourself. Only after a Statement of Incapacity form
is signed by two doctors or a doctor and a licensed psychologist does your
health care agent takes responsibility for making decisions.
Incapacity means not able to understand health care decisions, not able
to communicate decisions and not able to understand enough to agree or
disagree.
Before bringing your Advance Directive to the hospital or clinic
1.
Make sure your Advance Directive is witnessed properly. You must
sign your document in front of two witnesses (see witness requirements
in the Advance Directive document).
2.
Make sure all of the dates people signed match each other.
What to do with your Advance Directive once it is completed?
1.
Keep the original in a safe place.
2.
Give a copy to your physician(s) and discuss any final questions.
3.
Give a copy to your agent(s).
4.
A photo or fax copy of your document is just as legal as the original.
An Advance Directive will need to be reviewed as you age because your
wishes and goals may change as your health or circumstances change.
Consider reviewing your Advance Directive when doing routine estate
planning or each year as you complete your taxes.
Where to go if you need further assistance with Advance Care Planning
and Advance Directives?
1. Contact your local Ministry Health Care Hospital or Clinic.
2. Attend a local workshop to learn more about Advance Care Planning.
3. Contact your local Aging and Disability Resource Center (ADRC) or
Commission on Aging.
Tips for Starting the Conversation
It can be difficult to talk about aging and illness. It can bring up feelings of
fear and sadness, and many of us want to avoid talking about it. Caregivers
and families want to make the best decisions for you. Talking about your
thoughts and feelings about medical care is very important!
 Begin when you are still healthy if you can. Talk often. If you are already
ill, use this as an opportunity to talk with your family or friends.
 Use current events, newspaper articles or television shows to get you
started.
 Share stories of people you know who have been through a difficult health
care situation.
 Use family gatherings, birthdays or other events to raise the topic and
wishes.
 Use a routine physical or story you found in a newspaper or magazine to
open a conversation.
Talk with your Health Care Agent and Your
Physician
 The ability of your health care agent in making decisions – Not all of
the medical conditions you may face will be predictable. Your agent may
have to make decisions about a situation that you did not expect. It is
important to allow your agent some flexibility in making decisions based
on your values and previous conversations.
 Your health condition -Talk with your physician about your illness.
Learn as much as you can about your illness, is it reversible or something
you will live with for the rest of your life. If it is something you will live
with, learn about the care you may be offered such as medications, oxygen,
antibiotics, kidney dialysis, chemotherapy, radiation or cardiac devices.
You may want to ask:
 What does the treatment do?
 When will it be helpful for me?
 Will the treatment allow me to do more and feel better?
 When will it prolong my life, or prolong my dying?
 What are the burdens or side effects of the intervention?
 What will happen if I do not want the intervention?
 Implantable Cardiac Devices – If you have a pacemaker to regulate your
heart rate or a defibrillator that delivers a “shock” to the heart if it stops or
is in a dangerous rhythm, you will need to talk with your physician about
what this would mean for you at the end of life. Your wishes about a
cardiac device can be described in your Advance Directive.
 How decisions will be made – Your health care agent will make two kinds
of decisions.
o Permission: You give your health care agent permission to make
certain decisions. One example is giving “permission” for your
agent to admit you into a nursing home for long term care. If you
grant permission, it does not mean that you will go a nursing home
but allows your agent to make this decision if needed.
o Directive: You are directing your agent, or physician as to what you
would want in certain health care situations.
 The role of your physician –You have specialists involved in your care.
Decide which health care provider you want to coordinate your health care
at the end of life.
 Financing long term and end of life care – Ask questions about your
Medicare/Medicaid and insurance benefits.
 Faith concerns – Think about your faith, spirituality and religious
traditions.
 Control and dependency –Your feelings about independence may change
as you age or your health worsens.
 Organ and tissue donation – Discuss your feelings about organ and tissue
donation or whole body donation for medical research.
If you have questions about organ and tissue donation:
RTI Regeneration Technologies Inc.
608-231-9050
If you have question about donating your body to science:
Medical College of Wisconsin- Milwaukee 414-955-8261
University of Wisconsin-Madison
608-262-2888
Related Terms
As you talk with your health care provider and family about Advance Care
Planning and Advance Directives it may be helpful to be familiar with the
following terms.
Terminal illness is an incurable condition, caused by injury or illness that
will cause death in the near future, so that life-sustaining procedures only
prolong the dying process.
Persistent Vegetative State is a specific diagnosis indicating that higher brain
function is gone but that brain stem or lower brain function is still intact. The
intact brain stem allows for basic body functions like heart beat and
respiration but the higher functions such as thinking, feeling or hearing do not
work.
Patient Self Determination Act of 1991
This is a federal law that allows patients the right to accept or refuse medical
treatment and the right to create an advance directive.
Palliative care is an approach of providing care that focuses on comfort and
intends to achieve the best quality-of-life for patients and families affected by
serious illness. Palliative care can be offered at any time in the course of
illness. It can be provided while patients continue with usual care aimed to
cure or manage a disease.
Hospice is often thought of as a place, in truth hospice is an approach to care
reserved for patients who are no longer seeking a cure for their illness and
whose life expectancy is 6 months or less. Hospice care is an end of life
service for patients and families focusing on relief of troubling symptoms,
easing pain and improving quality-of-life.
Life Sustaining Treatments are medical treatments that maintain life. These
may include, but are not limited to, ventilator (breathing machine), kidney
dialysis, artificial nutrition and hydration, administration of blood products
and antibiotics, medications and interventions for chronic medical conditions.
Benefits and Burdens
The benefits are successful outcomes of a treatment such as restored function,
less pain, and /or extended lifetime. Burdens are the negative side effects or
outcomes of a treatment. They may include symptoms such as nausea and
vomiting, pain, confusion or even social issues or financial costs. The
discussion of benefits and burdens should be considered when talking about
options and goals of care.
Withholding or Withdrawing Life Sustaining Treatments
Withholding refers to not starting a life sustaining treatment. Withdrawing
refers to stopping a treatment after it has been started.
Time Trials
An agreed upon time period to reevaluate the success of a medical treatment.
A trial of a certain treatment may help in decision making.