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Planning for health care decisions
Planning ahead for future health
care needs and decisions is crucial to making sure that the
medical care you desire is what you will receive. It’s
never too early to plan. Even a twenty-year-old can get in a
car accident and become injured in ways that make it impossible
to participate in decisions about care. Without written instructions
(an advance directive), family members are left to guess and
often agonize over whether they are doing what their loved one
would have wanted.
To be sure your wishes are followed,
there is a process known as "advance care planning."
There are many benefits to making plans in advance for future
decisions. Thinking about your health care preferences before
you need treatment allows you to clarify your attitudes and
beliefs. It is ideal to talk with friends, family, and health
care representatives about your end of life choices. It’s
even better to put your wishes down in writing. You can prepare
for this bys following these steps:
- Reflect upon your
current health status, your future and life goals, and how you
define quality of life.
- Gather information
you need to make future health care decisions.
- Talk about end
of life decisions with friends, family, clergy, your doctor,
and anyone else that can help you clarify your eventual choices.
- Select someone
to help you write down your wishes. Consider making this person
your health care representative, the person who will make decisions
for you if you become unable to do so on your own.
- Complete the advance
directive form you need to document your choices.
- Inform others
of your advance directive and the choices you have made.
- Ensure that your
doctor and health care representatives can honor your wishes
for end of life care.
- Provide copies
of your advance directive to your doctor, hospital, your health
care representative and others who may need to have a copy.
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What are Advance Directives?
Advance directives are legal
documents that specify your healthcare wishes if you are unable
to speak for yourself. In Oregon, there is a legislatively
approved Advance
Directive form which can be completed without the
help of an attorney. The form provides several options for
end of life care and can be used to provide any additional
end of life instructions an individual may feel relevant to
their personal situation. You may change your Advance Directive
whenever you choose.
Two major components of the
Advance Directive are the appointment of a health care representative
and your instructions to your physician. The health care representative
is the person you choose to make your healthcare decisions
if you cannot speak for yourself. In Oregon, the Medical Power
of Attorney identifies the health care representative, and
is Part B of the Advance Directive form. Part C of the Advance
Directive form is the directive to physicians. It states which
life sustaining measures you wish to be used, withheld, or
withdrawn in a health crisis. These are the instructions the
doctor is directed to follow.
Another advance directive document
exists in Oregon and is called Physician Orders for Life Sustaining
Treatment (POLST). Signed by a physician, the POLST provides
orders from your doctor that are to be followed by all medical
personnel (this even includes the emergency medical technicians
if you are transported in an ambulance). A further description
of the POLST is provided on
this website.
In Oregon, you will want to
have a health care representative, a directive to physicians,
and a POLST to be sure that your wishes are followed. Advance
directives are legally valid throughout the United States.
The laws governing advance directives vary from state to state.
Usually an advance directive complying with the laws of the
state where it is completed will be valid in other states.
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How do I decide about life-supporting
measures?
Life support replaces or supports
a failing bodily function such as breathing, digestion, or
circulation. When a patient has a curable or treatable condition,
life support is used temporarily until the illness or disease
can be stabilized and the body can resume normal functioning.
There are times, however, when the body never regains the
ability to function without life support and the person would
die if life support were withdrawn. At this stage, the patient
is usually unable to make his or her preferences known. Decisions
to use or not use life support are difficult for family members
to make for someone they love. Planning ahead will help everyone
involved with end of life care.
Everyone has a right to make
choices about the health care they want for themselves. An
individual’s decision to forgo life support is deeply
personal and is to be respected. When making decisions about
specific forms of life support, gather the facts you need
to make an informed decision. In particular, it is important
to understand the benefits as well as the risks and alternatives
that any treatment will offer you. A treatment may be beneficial
if it relieves suffering, restores functioning, or enhances
the quality of life. The same treatment can be considered
burdensome if it causes pain, prolongs the inevitable dying
process, or adds to the perception of a diminished quality
of life. We have included the facts about commonly used life
support measures below. Looking at the facts may feel rather
grim and extremely final. But remember, you are considering
these issues in the context of the final days of life, not
necessarily tomorrow.
End of life decisions usually
include an understanding of the facts, an individual’s
values and ethics, and sometimes religious beliefs. Some people
find it difficult to put these together and translate them
into practical decisions. To help you, we have included in
italics the thoughts of individuals who have made decisions
regarding when to stop life support. We don’t promote
or discourage any one position. We simply provide these statements
as a springboard to give you perspective and help you clarify
your own desires concerning various life support measures.
For example, read the following passage and see how you respond:
"If life support actually
has a chance to get me back to where I was when I was healthy
and enjoying life, then okay for a limited time, say 10 days.
If I am so sick and miserable and there is no reasonable chance
of recovery to a quality of life I would accept, then I would
like to have vigorous comfort measures, but would not want
my life extended beyond what my body will support on its own."
Do you agree? Disagree? Use
these quotes to help clarify your own values and preferences.
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Commonly used life-support measures
Cardiopulmonary Resuscitation
(CPR): CPR is the use of drugs, pressure to the chest,
electric shock, and/or a respirator (breathing machine) to
keep the heart beating. When used quickly in response to a
sudden event like a heart attack, CPR can save your life.
In the context of chronic or terminal illness, however, studies
indicate that only about 15% of people advanced in age or
illness leave the hospital alive after CPR. In other words,
85% die in spite of receiving CPR. Those people who do get
CPR and survive often suffer from broken ribs as a result
of the process. While CPR could mean the difference between
life and death, it is not a gentle procedure and could well
be a traumatic way to die if you are already near the end
of your life.
"Given the statistics about CPR, I only want this
if I have a reasonable chance of recovery from the condition
that caused my heart to stop. For instance, if I have a sudden
heart attack but have been healthy enough to lead a fairly
functional life, do CPR. If I am debilitated by cancer and
my heart stops, do not do CPR."
Ventilator (breathing
machine): A ventilator is a machine that assists breathing.
A tube that pushes air into the lungs is inserted in your
throat. A ventilator can keep you alive when you are in severe
respiratory distress and your lungs are not working. Ventilators
are routinely used short-term after certain surgeries (i.e.,
open heart surgery). They can also be used for long-term chronic
conditions providing a quality of life acceptable to some
people. Ventilators can be quite uncomfortable as they force
a specific breathing pattern that may not be in sync with
your own. The tubes make talking difficult and can also cause
pain or discomfort. Near the end of life, a breathing machine
often merely prolongs dying. Without a ventilator, you could
die in a matter of minutes or hours, depending on your medical
condition.
"I
would be willing to go on a ventilator for a limited time,
say 4 days, if the doctors felt I just needed a little help
and there was more than an 80% chance that I would breath
on my own again. If it’s determined that my body will
not breath independently of the ventilator, I want to be taken
off but sedated so I do not have to feel the panic of going
from full oxygen to not being able to breathe."
Antibiotics: Antibiotics
are drugs used to fight infection. If you have an infection,
you may receive antibiotics in pill form or intravenously.
Antibiotics are often used in combination with one another
and can cause numerous side effects such as rashes and nausea.
Depending on the infection being treated, antibiotics can
be started and then stopped or replaced by another antibiotic.
Without antibiotics, the chance of surviving a serious infection
depends on your overall medical condition and the underlying
illness you have. In some cases, without antibiotics to fight
your infection, you could die in a few hours to a few days.
"
If I have a terminal illness and get an additional infection
that is causing me pain, give me antibiotics. I don’t
want them as a means to prolong my life, but as a means to
keep me pain-free. On the other hand, if I have a terminal
illness and also contract pneumonia or some other painless
infection, do not give me antibiotics. Pneumonia is a reasonably
painless way to die, and since I’m going to die anyway,
let me go peacefully."
Tube Feeding (artificial
nutrition and hydration): Tube feeding is when a tube
is placed down your nose and into your stomach or inserted
through a small hole in your abdomen. If you cannot eat or
swallow, you may receive a chemically balanced formula of
nutrients for fluid replenishment and nutrition through this
tube. Called "artificial feeding," this procedure
can be a short-term bridge to healing for sudden illnesses.
Artificial feedings can also be used for long-term chronic
digestive conditions, providing a quality of life acceptable
to some. However, near the end of life, artificial
feeding often merely prolongs dying. Without artificial
feeding you will die in a matter of days or weeks. Death from
lack of nutrition, however, appears to be painless.
"I
personally abhor the idea of being kept alive by tubes and
machines. It strikes too deeply at my dignity. At some point
we all need to go. If I am unconscious and not able to eat,
do not prolong my life through artificial feeding. It’s
like anything out in nature, if I’m unconscious and not
eating, it just must be my time. Let nature take its course."
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For more information
Consumer
Tool Kit for Advanced Directives (downloadable
off the web)
Tool 1: How to Select Your Health Care Agent or Proxy
Tool 2: Are Some Conditions Worse Than Death?
Tool 3: How Do You Weigh Odds of Survival?
Tool 4: Personal Priorities and Spiritual Values Important
to Your Medical Decisions
Tool 5: After Death Decisions to Think About Now
Tool 6: Conversation Scripts: Getting Past the Resistance
Tool 7: "Proxy IQ Test" for Family or Physician
Tool 8: What to Do After Signing Your Health Care Advance
Directive
Tool 9: Guide for Health Care Proxies
Tool 10: Resources for Advance Planning for Health Care
Hard Choices for
Loving People
This insightful book is downloadable from the web, free of
charge, if you are going to use it for personal reasons. Professionals
and service organizations are requested to purchase it. Covers
a wide array of topics:
CPR, tube feeding, comfort care, hospitalization, ventilators,
dialysis, antibiotics and practical help with decision-making.
Five
Wishes
This form is not legally binding in Oregon, however it presents
a good collection of questions, in lay person’s terms,
that can help you discuss the scope of issues. (You can preview
this form online, but cannot print from this website)
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