Health Care Decisions

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related topic
AIDS referral organizations. The AIDS epidemic has been responsible
for the incapacity and deaths of thousands of people. AIDS has made people
aware of their mortality and their need to be responsible to themselves and their
loved ones. Chapter 11 provides information on organizations that provide legal
assistance or referrals for people with HIV or AIDS.
Terminal Illnesses and Hospices
All over the country, hospice programs help terminally ill people maintain
control over how they live and, ultimately, die. There are over 2,000 hospices
in the United States Cancer patients make up the highest proportion of
hospice patients. In addition, thousands of AIDS patients use hospices each
year.
Typically, the terminally ill person stays at home, where care is provided
by family, close friends, and medical professionals through the home hospice
program. Some hospices provide housing for terminally ill patients just before
death. Special counseling is given to the terminally ill person and those close
to him. Hospice programs help ensure that a terminally ill person gets the
type of medical care he wants. For example, if a patient is opposed to being
connected to respirators or other life support systems, a hospice can provide
alternatives, or just provide pain relief.
Information about hospices throughout the country can be obtained
from the National Hospice and Palliative Care Help Line, 800-658-8898.
Health Care Decisions
The increasing use of life-sustaining medical technology has raised fears
that our lives may be artificially prolonged against our wishes. But the
right to die with dignity, in one’s own time, has been addressed and
confirmed by the U.S. Supreme Court, the federal government, and the
legislatures in every state.
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The United States Supreme Court has ruled that every individual has
the constitutional right to make medical decisions without interference.
The Court also has held that medical personnel must follow “clear and
convincing evidence” of a person’s wishes—even if the patient’s family
opposes those wishes.
The same right to choose or refuse medical treatment protects against
the situation where doctors might wish to provide a patient with less care
than the partner would like. For example, a doctor may be unwilling
to try experimental treatments or maintain long-term treatments on
a patient who the doctor feels has slim chances of recovering. And an
insurer or HMO might not want to provide even minimal treatment to a
patient who seems likely to die soon.
Below we explain the legal documents you can use to establish control
over your health care if you become incapacitated. While these matters
can seem dry or technical, the underlying reality is anything but. You
are making choices that are profound and deeply personal, and may
be wrenching at the time you make them. While it’s vital to prepare
these documents, it’s equally vital to proceed carefully. Take time to
understand your own desires and your options. And take time to discuss
your decisions with whomever you appoint to act for you.
Documents Protecting Choice About Medical Care
Every state has laws authorizing individuals to create medical care
documents that provide the “clear and convincing evidence” of that
person’s wishes concerning life-prolonging medical care. Validly prepared
and executed, these documents are binding on medical personnel and
institutions. There are two basic types of documents. You should prepare
both:
• specific written directions—called a “living will,” declaration, or
health care directive—that describe the medical care you want (and
don’t want) if you can no longer express your wishes;
• written authorization—usually called a durable power of attorney
for health care, or sometimes a health care proxy or patient
advocate designation—that names a person you choose to supervise
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implementation of your expressed wishes and to make other medical
decisions for you, and describes the circumstances under which the
person may act, such as if you are mentally incapacitated.
Some states combine the two types of documents into a single form.
For instance, California’s single form is called an “Advance Health Care
Directive.”
Most medical care documents are drafted to provide that the person
creating them must be incapacitated and unable to make medical care
decisions before the documents become effective. In legalese, this is called
a “springing” document or power, because it only springs into effect if
and when it’s needed.
Caution
Determination of incapacity. Traditionally in our culture, mental
incapacity must be determined by a doctor. So a durable power of attorney for
health care generally states that a doctor must sign a written statement of a
person’s incapacity in order for the document to become effective. As anyone
who has visited a doctor’s office in the last few years has learned, a federal law
(the “Health Insurance Portability and Accountability Act,” commonly referred
to as HIPAA) now imposes patient privacy rights on health care providers. HIPAA
rules also govern the release of a patient’s medical information, including a
doctor’s statement that a patient has become incapacitated. What this means,
practically, is that every durable power of attorney for health care must contain a
provision specifically authorizing doctors to make a determination of incapacity,
and, if necessary, releasing any of the medical records needed or used in making
that determination. The forms in this book include that provision.
You can impose further limits on when your health care documents
become effective by restricting them, say, to when you are in a coma or
have a terminal condition. But these limits may be overly restrictive. If
you cannot or do not want to make your own medical decisions, even if
you’re not in a coma or in a terminal condition, you will want the person
you’ve named to be able to make decisions for you.
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Differences Among Types of Medical Care Documents
The difference between the two types of documents described in the
previous section—a declaration and a durable power of attorney for
health care—is simple. The declaration or living will is a statement you
make directly to medical personnel that spells out the medical care you
do or do not wish to receive if you become incapacitated. It functions as
a contract with your treating doctors, who must either honor your wishes
or transfer you to other doctors or a facility that will.
In a durable power of attorney, you appoint someone else (called your
“attorney-in-fact” or “agent”) to see that your doctors and health care
providers give you the kind of medical care you want. You usually also
give your attorney-in-fact the authority to make medical care decisions on
your behalf when you can’t make them yourself. In some states, you can
give your agent broader authority to make decisions on your behalf, such
as when to hire and fire doctors.
When Your State Form Is Not Enough
When it comes to medical care forms, there are many differences in the
documents and formats used by different states. Some state laws require
that a specific form must be used for a directive to be valid. Because the
Supreme Court has ruled that every individual has a constitutional right to
direct his or her own medical care, however, the most important thing for
you to keep in mind is that your directions should be clear and in writing.
If you feel strongly about a particular kind of care—even if your state law
or the form you get does not address it—it is a good idea to include your
specific thoughts in your written document. If you are using a state form
that does not adequately address your concerns, write them in on the form
with the additional request that your wishes be respected and followed.
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Caution
It’s best to use your state’s forms. Each state has its own specific
rules and requirements for making medical care forms. With a durable power of
attorney for health care, you must use your state’s forms. With a living will, you
may have a constitutional right to create your own form, but there’s no good
reason to start from scratch. Begin with your state’s form, which is fine for most
people. If you want to be more specific than your state form provides for, you can
insert additional provisions into that form.
Where to Get Medical Care Documents
You can obtain medical care documents free or for a nominal fee from a
number of sources, including:
• local senior centers
• local hospitals (ask to speak to the patient representative; by law,
any hospital that receives federal funds must provide patients with
appropriate medical care forms)
• your regular physician,
• your state’s medical association, and
• Quicken WillMaker Plus software from Nolo. Californians can also
use Living Wills & Powers of Attorney for California, by Shae Irving
(Nolo).
What to Include in a Medical Care Form
The problem many people have in filling out their state medical directive
forms is that they are not sure how to fill in the blanks—and are not sure
what much of the terminology means. Generally, in your directive, you
can:
• specify whether or not you want your life prolonged with medical
treatment and procedures, and
• identify specific medical treatments and procedures that you want
provided or withheld.
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In an Emergency: DNR Orders
In addition to your living will and durable power of attorney for health care,
you may want to prepare a “do not resuscitate” order, or DNR order. A DNR
order is used for the specific purpose of alerting medical personnel to the
fact that you do not want to receive cardiopulmonary resuscitation (CPR) in
the event of a medical emergency.
You may want to consider a DNR order if:
• you have a terminal illness
• you are at increased risk for cardiac or respiratory arrest and feel you
wouldn’t want CPR if you became ill, or
• you have strong feelings against the use of CPR under any
circumstances.
In most states, any adult may secure a DNR order. But a few states allow
you to create an order only if you have been diagnosed as having a terminal
illness. If you want a DNR order, or you want more information about DNR orders,
talk with a doctor. A doctor’s signature is required to make the DNR valid—
and in most states, the doctor will obtain and complete the necessary
paperwork. If the doctor does not have the information you need, call the
health department in your state and ask to speak with someone in the
division of emergency medical services.
If you sign a DNR order, discuss your decision with your partner or other
caretakers. They should know where your form is located—and who to call if
you require emergency treatment. Even if you are wearing identification, such
as a bracelet or necklace, keep your DNR order in an obvious place. Consider
keeping it by your bedside, on the front of your refrigerator, in your wallet,
or in your suitcase if you are traveling. If your DNR order is not apparent and
immediately available, or if it has been altered in any way, medical personnel
who attend you will most likely perform CPR and other life-prolonging
techniques.
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However straightforward this may seem initially, preparing a medical
care form can be difficult. First, you need to understand some basics
about what kind of care you can select or prohibit. Then comes the often
more wrenching task of facing up to what some choices may involve. For
instance, do you want to allow, prohibit, or require that water or food be
artificially administered to you through tubes if you are near death? If
you prohibit this, you may die from dehydration or starvation. All of the
choices you make have consequences that are difficult to predict.
Below, we discuss the basic types of life-prolonging medical treatment.
To make an informed decision about which procedures you do and
do not want, we suggest discussing your medical directive with your
physician, who can explain the medical procedures more fully and discuss
the options with you. You will also find out whether your doctor has any
medical or moral objections to following your wishes. If the doctor will
not agree to follow your wishes, you can choose to change doctors.
The following medical procedures and treatments are usually
considered to be “life prolonging.”
Blood and blood products. Partial or full blood transfusions may be
recommended to combat diseases that impair the blood system, to foster
healing after a blood loss, or to replenish blood lost through surgery,
disease, or injury.
Cardiopulmonary resuscitation. CPR is used when a person’s heart or
breathing has stopped. CPR includes applying physical pressure, using
mouth-to-mouth resuscitation, using electrical shocks, administering
intravenous drugs to normalize body systems, and attaching you to a
respirator.
Diagnostic tests. Diagnostic tests are commonly used to evaluate
urine, blood, and other body fluids and to check on all bodily functions.
Diagnostic tests can include X-rays and more sophisticated tests of
brainwaves and/or other internal body systems.
Dialysis. A dialysis machine is used to clean and add essential
substances to the blood—through tubes placed in blood vessels or into
the abdomen—when kidneys do not function properly.
Drugs. The most common and most controversial drugs given to
seriously ill or comatose patients are antibiotics—administered by mouth,
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through a feeding tube, or by injection. Antibiotics are used to arrest
infectious diseases. Drugs may also be used to eliminate or alleviate pain.
Because high doses of pain control drugs can impair respiration, such
drugs sometimes hasten death in a seriously ill patient.
Respirator. A mechanical respirator or ventilator assists or takes over
breathing for a patient by pumping air in and out of the lungs. These
machines dispense a regulated amount of air into the lungs at a set rate—
and periodically purge the lungs. Patients are connected to respirators
by a tube that goes through the mouth and throat into the lung or is
surgically attached to the lung.
Surgery. Surgical procedures are often performed, even on people who
are terminally ill or comatose, to stem the spread of life-threatening
infections or to keep vital organs functioning.
In addition to life-prolonging procedures, you may want to include
in your directive your wishes about comfort care and artificially
administered food and water.
Comfort care. The laws of many states exclude pain-relieving procedures
from definitions of life-prolonging treatments that may be withheld
through a health care directive. If that was all there was to it, most
people would agree with this and welcome the relief. But the medical
community disagrees over whether providing drugs to make a person
comfortable or alleviate pain will also have the effect of prolonging the
person’s life.
Some people are so adamant about not having their lives prolonged
when they are comatose or likely to die that they direct that all comfort
care and pain relief be withheld even if a doctor thinks those procedures
are beneficial. Other people are willing to have their lives prolonged so
that discomfort or pain will be treated.
Artificially administered food and water. If you are close to death from
a terminal condition or in a permanent coma and cannot communicate
your preferences, it is possible that you will also not be able to voluntarily
take in water or food through your mouth. The medical solution is to
provide you with food and water—as a mix of nutrients and fluids—
through tubes inserted in a vein, into your stomach through your nose, or
into your stomach through a surgical incision.
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Intravenous feeding, where fluids are introduced through a vein in an
arm or a leg, is a short-term procedure. Tube feeding through the nose
(nasogastric tube), through the stomach (gastrostomy tube), intestines
(jejunostomy tube), or largest vein, the vena cava (total parenteral nutrition),
can be carried on indefinitely.
Similar to the controversy over comfort care, medical experts are
split over whether artificial food and water prolongs life or is medically
necessary.
Other options to be considered. You may want to include one or more of
the following:
• naming the primary physician you want responsible for your care, if
you have an established relationship with a doctor you trust
• specifying whether you wish to donate organs, tissues, or other body
parts after death, or
• authorizing your attorney in fact to decide where you should live, if
you are incapacitated and can no longer live at home. You can also
add more specific directions of where you would like to be moved
to, or other housing desires.
Even when you have specified your wishes regarding life-prolonging
medical treatment and comfort care in a living will, certain decisions may
still be difficult. They may include:
• when, exactly, to administer or withhold certain medical treatments
• whether to provide, withhold, or continue antibiotic or pain
medication, and
• whether to pursue complex, painful, and expensive surgeries that
may serve to prolong life but cannot reverse the medical condition.
Moreover, despite your living will, some medical personnel may prove
reluctant to comply with your wishes. Or they may want interpretation as
to how to apply your wishes to a specific situation. For all these possible
reasons, you want to appoint someone with legal authority to enforce
your wishes and decide any newly arising medical issues for you. That
person, appointed in your durable power of attorney for health care, is
generally called your “attorney-in-fact.”
To help the appointed person carry out your decisions, the power of
attorney may include specific authorizations:
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• to give, withhold, or withdraw consent to medical or surgical
procedures
• to consent to care for the end of life, including pain relief
• to hire and fire medical personnel
• to visit you in the hospital or other facility even when other visiting
is restricted
• to have access to medical records and other personal information,
and
• to get any court authorization required to obtain or withhold
medical treatment if a hospital or doctor does not honor the
document.
Choosing Your Attorney-in-Fact
The most important factor in choosing your attorney-in-fact is to select
a person you totally trust. Most readers will choose their partner, but
are not required to do so, even if you are legally married or partnered. If
your partner or spouse can’t serve because of health reasons or because of
reluctance or inability to be a strong advocate, be sure you pick a person
who truly understands you and your life, and whom, of course, you can
rely on totally.
You should also appoint an alternate attorney-in-fact, in case your
original choice cannot serve or continue to serve. Make it clear that the
second person is only a backup. It is not a wise choice to appoint two
people to do the job together; that is likely to complicate the process.
Caution
Do not appoint your doctor or any medical personnel as attorneyin-fact. Although your doctor is an important person for your attorney-in-fact to
consult concerning all health care decisions, you should not appoint your doctor
to act as attorney-in-fact. The same holds for all medical personnel. The laws in
most states forbid treating physicians and medical personnel from acting in this
role—to avoid the appearance that they may have their own interests at heart
and may not be able to act purely according to your wishes.
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Important Terms
Principal: The person who creates and signs the power of attorney
document, authorizing someone else to act for him or her. If you make a
durable power of attorney for health care or finances, you are the principal.
Attorney-in-Fact: The person who is authorized to act for the principal.
In many states, the attorney-in-fact is also referred to as an agent of the
principal.
Alternate Attorney-in-Fact: The person who takes over as attorneyin-fact if your first choice cannot or will not serve. Also called successor
attorney-in-fact.
Durable Power of Attorney: A power of attorney that will remain in
effect even if the principal becomes incapacitated, or will take effect only if
the principal becomes incapacitated.
Incapacitated: Unable to handle one’s own financial matters or health
care decisions. Also called disabled or incompetent in some states. Usually, a
physician makes the determination.
Springing Durable Power of Attorney: A durable power of attorney that
takes effect only if a physician determines that the principal cannot handle
his or her own financial affairs. In some states, this document may be called
a conditional power of attorney. The form included in this book gives you
the option of making your power of attorney springing.
Preparing Your Health Care Documents
You do not need to consult a lawyer to prepare a living will, durable
power of attorney for health care, or other medical care form. While you
may have to make difficult decisions about what types of care you want or
do not want, these are not legal issues. It is wise to discuss what you want
in depth with your attorney-in-fact. In grim reality, making a medical
decision for a loved one can be confusing, painful, and difficult. You want
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your attorney-in-fact to understand as much as possible what you want so
that you both can be certain the decisions made are the right ones.
What to Do With Your Completed Documents
Once you have completed the documents directing your medical care,
there are several steps you should take.
Signing, witnessing, and notarizing. Follow your state’s requirements for
making your documents valid. Every state requires that you sign your
documents—or direct another person to sign them for you—as a way
of verifying that you understand them and that they contain your true
wishes.
Most state laws also require that you sign your documents in the
presence of witnesses. The purpose of this additional formality is so that
there is at least one other person who can attest that you were of sound
mind and of legal age when you made the documents.
Some states also require that you and/or the witnesses appear before
a notary public and swear that the circumstances of your signing, as
described in the documents, are true. In some states, you have the option
of having a notary sign your document instead of having it witnessed.
Notarized health care documents are more likely to be honored in other
states than documents that are merely signed and witnessed.
Making and distributing copies. Ideally, you should make your wishes
for your future health care widely known. Keep a copy of your medical
documents, and give other copies to:
• any physician with whom you now consult regularly
• any attorney-in-fact or health care proxy you have named, including
any backup
• the hospital or other care facility in which you are most likely to
receive treatment, and
• any other people or institutions you think it’s wise to inform of your
medical intentions, such as a hospice program.