On-Line Continuing Medical Education:
Project GRACE is pleased to announce that the Florida Medical Association is now offering an online continuing medical education course in end-of-life care. We are proud to partner with the FMA to provide this resource. To access the course, click on the hyperlink below.
Florida Medical Association
Education for Spiritual Leaders
Introduction
End of Life Issues
Community faith leaders can be instrumental in educating people
about end of life issues and the importance of completing an Advance
Care Plan. In the past, we have referred to these documents as
Advance Directives or a Living Will.
Among the common elements shared by faith traditions are the values
of human life, the dignity of an individual, compassion for the
sick, care of the suffering and recognition of the need for
spiritual support at the end of life. The acceptance and knowledge
of these issues enables faith leaders to communicate effectively and
provide information about Advance Care Planning.
The information you can provide your constituents will enable them
to understand the issues better, complete an Advance Care Plan, and
designate an appropriate Health Care Surrogate. Project GRACE is
dedicated to providing the necessary information and assistance to
make this community initiative successful.
The Educator’s Role
Your role as a facilitator will be as an educator. You must
introduce this sensitive topic with both passion and compassion.
Passion, because it is a growing necessity that everyone over the
age of 18 has an advance care plan in place, and compassion because
it is such a sensitive topic when there is discussion regarding
mortality.
It is possible that this issue could produce an emotional response
such as fear, intimidation, suspicion, or even denial. Please do not
hesitate to encourage an individual to seek guidance from his/her
physician and/or attorney about these issues.
Advance Care Planning is important to everyone! It could be your
spouse, your family, your friends, your social group, or your
congregation that would like more information. It is actually a very
simple procedure to complete an advance care plan.
Encouragement Needed
There is no requirement for the document to be notarized and only
two witness signatures are required. However, in our research, we
have found that many people do have questions and need guidance at
the time of completing their plan. That is where you can be of
assistance, providing words of encouragement and support.
Our Goal
In the process of compiling this facilitator guide, our goal is to
make you more comfortable with the subject matter and more able to
answer questions, which individuals may express. Any person you come
into contact with, over the age of 18, needs to consider his/her
responsibility to execute an Advance Care Plan. Your role will be to
assist them to do it! That is not to say you will always have all
the answers. There are times you will feel an individual would be
better served by speaking to a physician or an attorney about
his/her concerns.
Our wish is that at the end of reviewing this guide and attending a
training session, you will be ready to establish programs in your
community to educate individuals about these important issues.
Guidelines
Make Advance Care Planning A Priority
Encourage individuals to be open and honest with their physician
about their Advanced Care Plan and provide all physicians involved
with their medical care with a copy of the document. To better
promote family understanding of individual priorities regarding
medical treatment, it is crucial to have open, honest discussions
about those choices.
The Advance Care Plan is designed to promote these discussions and
encourage decision-making that is based on different medical
scenarios. It is vital for an individual to specify a Health Care
Surrogate.
Purpose of Advance Care Plan
An Advance Care Plan is a legal document, initiated by anyone over
the age of 18, which states the individual’s wishes for medical
treatment when cure is not possible. The medical community only uses
the document if the individual is unable to convey his/her wishes
personally and if the individual is determined by a physician to be
end stage, terminal or in a persistent vegetative state.
This right to choose or discontinue medical treatment is a
constitutional right. Many individuals feel strongly regarding
medical treatment at the end-of-life, and this document provides a
means to communicate their wishes to family, clergy and Health Care
professionals.
Advance Care Plan
We want to assist community leaders to open a conversation and
discuss the importance of having an Advance Care Plan and naming a
Health Care Surrogate. This guide will improve the level of
knowledge regarding medical decision-making and the legalities
involved in promoting greater comfort in the discussion of these
issues.
Health Care Surrogates
A Health Care Surrogate is any legally competent adult designated by
an individual to make health care decisions on behalf of an
individual if he is unable to speak for themselves. The role of the
Surrogate is to speak on behalf of the individual, only representing
the beliefs of the individual. For that reason, it is crucial that
the Health Care Surrogate to be familiar with the expressed values,
beliefs and wishes for the individual they serve as a Health Care
Surrogate.
After proper communication between the individual and the designated
Health Care Surrogate, to clarify the wishes for health care, a copy
of the Advance Care Plan should be provided to the Health Care
Surrogate for their records.
Ethical Disclaimer
The discussion of Advance Care Planning brings up the topics of
death and dying, which our society has deemed “difficult” and a
“taboo” subject. Currently, our culture is much more comfortable
with the notion of wellness and the healing power of medicine. In
fact, medicine has made vast leaps in its ability to sustain life.
Death can be postponed by the use of life-support machines, potent
drugs and artificial nutrition. Many patients feel that if medical
interventions are only serving to prolong dying, they want them to
cease. An Advance Care Plan enables an individual to put into
writing his/hers desires about care at the end-of-life.
Due to the personal and emotional nature of these decisions and
discussions, it is important for the facilitator to be sensitive to
these issues. The role of the facilitator is one of education and
support. The individual and his family serve as the decision makers
regarding end of life medical treatment.
There are no “right” or “wrong” decisions. According to the
individual’s circumstances, these decisions may vary over time. It
is simple to complete a new document at anytime. That is why it is
recommended the individual and their physician review the Advance
Care Plan at least annually.
Concerns And Fears
There is a general fear of becoming a “victim” of the Health Care
system and not being treated with all technology available or not
receiving the appropriate medical treatment when there is a chance
of recovery, such as in the event of a car accident. The other side
of that concern is the fear of being kept alive artificially, by
machines or medical procedures, when there is no hope for recovery
or quality of life.
People want more personal control over the circumstances of their
dying, which is reflected in fears that they will not be given such
control. Your role is to help people take control and take action.
Even more strongly, people don’t want to be a burden to their
families when they die. This suggests an obvious leverage point for
the end-of-life movement: to reach out and influence public
attitudes and behavior, by underscoring the need to plan for
end-of-life care — in order to spare family survivors some of the
avoidable financial, emotional and physical burdens of dying.
Individuals spoken wishes will always take precedence over a written
document. It is also just as vital to know that the document would
not be utilized unless a physician is willing to state that the
individual has an end stage illness, is terminal or in a persistent
vegetative state. In the event that concerns or fears persist after
receiving this information, it is recommended that the individual
seek legal and/or medical advice.
Palliative Care
Palliative care addresses an individual’s comfort physically,
socially and spiritually. With medical advances and improved
medication, there is no reason for people to suffer. It is an
individual’s right to have their pain controlled. Physicians have a
responsibility to manage pain properly. If an individual is
suffering and pain is going unmanaged, please seek other medical
advice and/or contact your local hospice.
Creating an Advance Care Plan should not affect the care you receive
by health care professionals regarding pain, suffering or being kept
comfortable with all symptoms under control.
Communication
One of the most important aspects of completing an Advance Care Plan
is to utilize it to promote conversation and make your personal
directives understood. If an individual’s wishes are not clear, or
if one family member disagrees with the validity of the document, it
is possible, your physician may not honor the wishes stated in the
document.
At times of stress and illness, many individuals will turn to their
spiritual leaders for advice and comfort. It is important for clergy
to listen and be supportive of the individual’s choices. It is
recommended that the clergy be provided copies of the document,
along with a thorough discussion regarding the priorities for
medical care at the end-of-life.
Communication Tips
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Sit with individual, if possible, or family,
reinforce therapeutic alliance.
-
Convey concern for the patient before presenting
detailed medical information.
-
Speak in lay terms, not medical terminology,
summarizing the medical picture.
-
Focus on care and treatments to be provided, not
withheld, relating them as much as possible to patient’s goals,
values or preferences.
The Extra Mile: Bereavement
The power of words to support, to comfort, and to bringing reality
out of confusion cannot be underestimated. In the immediate days and
weeks of grieving, caring words and acts of kindness carry within
them seeds of healing for the family. A follow up call, card or
visit demonstrates a commitment to the family.
Continued support to the family is important as they go through the
process of losing a loved one. Bereavement is not on a set schedule.
The continued support will help ease the process.
True Stories
The following true stories are provided to promote thought about
decisions, which might be addressed when completing an Advance Care
Plan.
These studies are taken from the book written in 2001 by L.L. Basta
M.D. Life And Death On Your Own Terms
True Story # 1
John is a very pleasant 92 year old man who resides in an assisted
living facility. In the past year, he has been hospitalized 3 times
for heart failure, made worse by accompanying pneumonia. He has now
executed an advance care plan, choosing to forego life-sustaining
procedures, including artificial breathing and feedings. He then
suffers another episode of heart failure and difficulty breathing.
What should the assisted living facility do?
True Story # 2
Jane is a pleasant 86 year old woman who resides in a nursing home.
She has a history of difficulty with swallowing and aspiration
pneumonia. (Pneumonia caused by ingestion of food or liquids into
the lungs because of swallowing difficulties.)
Jane has an Advance Care Plan stating she does not want to be kept
alive by machines. The physician has put her on a full liquid diet,
stating she cannot have solid food for fear that she may choke or
aspirate.
Jane states she wants an ice cream cone. Her daughter tells the
nurses to honor her mother’s wishes. The physician continues to be
fearful the patient will choke. What should the nurses do?
True Story # 3
Jane was 82 years old. She executed her advance care plan 4 years
ago naming her daughter as her Health Care Surrogate. She states in
the document she wants to forego life prolonging measures which use
artificial means.
She has a heart attack, is hospitalized and is unresponsive. The
hospital and physicians have a copy of her document and attempt to
contact the surrogate, her daughter. They discover that the daughter
is deceased, died last year from colon cancer. What should the
hospital do?
True Story # 4
Mark is 31 years old, an unmarried male who is employed by a large
construction company. He suffers a head injury at work, and has been
hospitalized for the past 4 weeks, in a deep coma. He has made no
Advance Care Plan, and has not spoken to his mother or father about
his wishes regarding end of life medical treatment. Who will make
his medical decisions and on what information will they base those
decisions?
True Story # 5
Sharon is a 28 year old that suffers a cardiac arrest at home. Her
husband calls emergency services and she is resuscitated. Since that
time, she has been dependent on a ventilator for breathing. Six
years have passed; she resides in a nursing home in order to receive
the level of care she requires.
Her husband states that she would not want to be kept alive in this
condition. Her mother and father feel that she will recover and want
the artificial ventilation to continue. Sharon had no Advance Care
Plan and did not name a Health Care Surrogate. How will decisions be
made regarding her medical treatment? Who will make the decisions?
