Most people who have had personal experience dealing with health care
for an incapacitated loved one have not had legal difficulties. That's
because, traditionally, healthcare providers have turned to the next of
kin for decision-making. If there is agreement between the decision-maker
and the doctor, and if there are no objections from other family members,
everything generally goes smoothly. But, when there are disagreements, the
results can be heart-wrenching.
Over and over, during the coverage of Terri Schiavo's tragic death,
television "experts" pronounced that, in cases like hers, when a
person hasn't left written directions about health care, all states have
laws giving decision-making authority to the spouse. That sounds logical.
But it's not accurate.
Forty states and the District of Columbia do, indeed, have laws
specifying who can make decisions for a patient who does not have an
advance directive. In many – but not all – of those states, a spouse
is designated as first in priority, followed by adult children, parents,
and siblings. Other states have different procedures for deciding who will
speak for a patient.
For example, in Tennessee, the supervising healthcare provider selects
the decision-maker after giving consideration to the patient's
spouse, adult child, etc. (2) Similarly, in Indiana, any of those
listed (spouse, parent, adult child, sibling, etc.) can decide for the
incapacitated patient. (3) West Virginia gives the patient's attending
physician or an advanced nurse practitioner the right to select the
decision-maker from the priority listing based on who the physician or
nurse believes would be the best decision-maker. (4) Thus, if the doctor
doesn't agree with the patient's spouse about what should or should not be
done, that physician can designate someone else (a parent, sibling, or
close friend of the patient) as the decision-maker. And then there's
Connecticut where decision-making is left to the physician in consultation
with the next of kin. (5) Note that this means only that the next of kin
must be consulted. It does not mean that there must be agreement.
Essentially, the doctor calls the shots.
In California, a patient can orally designate someone to make decisions
when treatment begins. That designation is in effect only during the
course of treatment or illness, or during the stay in the healthcare
institution where the designation is made, or for 60 days, whichever
period is shorter. (6) That's of little help, however, if the patient is
not conscious when admitted for care.
Contrary to what was said so often during the Schiavo case, Florida law
does not give first priority to a spouse, but to a court-appointed
guardian. (7) A spouse is second to a guardian on Florida's priority list.
Although Michael Schiavo was Terri's husband, his authority to remove her
food and fluids came from his status as her court-appointed guardian.
Very soon after Terri's brain injury, Michael petitioned the court to
be named her guardian. If one of her parents or siblings had opposed
Michael's appointment at the time, or if any of them had sought to become
her guardian, it is possible that one of them, rather than Michael, may
have become Terri's decision-maker. Whether a legal guardian is appointed
and who that guardian is falls solely within the discretion of the court.
Technically speaking, the court could even have appointed a guardian who
was a complete stranger to make decisions for Terri.
Even if a person happens to live in a state in which the priority list
gives authority to the person that they would prefer to have as a
decision-maker, that priority list is only effective while in that state.
Therefore, if a person is traveling in another state and is in a car
accident there, leaving him temporarily or permanently unable to make
medical decisions, the law in the state where the accident occurred will
control.
Having an appropriate, carefully drafted advance directive (of the
right type) is the only way to be certain that the person you want to make
decisions for you will have the authority to protect you.
So how can people make certain that their values are respected, their
lives protected, and their medical care is provided in a manner that they
would choose?
Does it mean, as so many experts advise, that everyone should have a
living will? If, and only if, the term, "living will," is used
generically to refer to an advance directive, the answer is
"yes." Frequently, lawyers and others who should know better
call any type of advance directive a living will. But there are major
differences between the types of advance directives. All living wills are
advance directives, but not all advance directives are living wills.
The Living Will
The most protective and the most flexible type of advance directive is
the durable power of attorney for health care. With this type of document
you designate someone else to make healthcare decisions on your behalf if
you are ever temporarily or permanently unable to make those decisions for
yourself. The person you name is usually called an "agent,"
although some states refer to this individual as an
"attorney-in-fact," a "healthcare proxy," a
"healthcare representative," or a "healthcare
surrogate."
The person you name should be an adult who shares your views and
values. This may, but need not be, a family member. It is also important
that that person have the ability to be assertive when necessary. He or
she should be a person who will be open to receiving necessary information
and who will not be intimidated by a physician or ethics committee who may
hold different views.
When you are able to make your own decisions, it is the responsibility
of your healthcare providers to let you know your diagnosis, to give you
information about possible treatments, as well as the risks and benefits
associated with those treatments. Then, it is up to you to give or
withhold consent based on that information. When you are not able to make
your own decisions, the person you have named as your agent stands in your
shoes. The doctor gives your agent the same information that would have
been given to you and then, based on your prior discussions with your
agent regarding your wishes and values, your agent gives or withholds
consent for treatment on your behalf.
Because the durable power of attorney for health care is a legal
document, it is important that you have one that is carefully drafted
since every word takes on a legal meaning.
Some durable power of attorney for health care documents – even those
that have been drafted by well-meaning organizations – contain blank
lines where the signer is directed to "fill in your additional
wishes." This can present significant problems since the signer may
write in words that have a legal meaning that differs from his or her
intent. For example, a signer may write that she doesn't want
life-sustaining treatment "if death is imminent." But what the
signer meant by "imminent" might be death is going to occur in
several days when, in fact, some states and some healthcare facilities
interpret "imminent" as meaning up to one year! It is best to
treat documents with fill-in-the- spaces or check boxes as well-meaning,
but potentially problematic, documents.
It is not necessary, advisable, or even possible to write everything
down about your wishes. There is no way any one of us can envision every
possible condition, treatment, or situation we could face at any time. The
most important thing is to maintain communication with your agent about
your wishes as they change from time to time. Sometimes what we want now
may be different than what we wanted five years ago.
Since requirements for a valid durable power of attorney for health
care differ from state to state, your document must comply with the law in
your state. Some states require that the documents be witnessed. Others
require that they be notarized, while yet others may permit either. Some
states require that specific warnings or notices be included in any
preprinted forms. Others do not.
If your durable power of attorney for health care is valid when you
sign it in your home state (the state where you are registered to vote or
where your driver's license is issued), it will be honored in other states
when you are traveling.
Having a carefully drafted durable power of attorney for health care is
the only way to be assured that someone who has your best interests in
mind will be making your medical decisions if you are ever unable to make
those decisions for yourself.
That's why the ITF formulated the Protective Medical Decisions Document
(PMDD).
The Protective Medical Decisions Document (PMDD)
The PMDD is a carefully drafted durable power of attorney for health
care that has been designed to meet state requirements and to protect the
signer.
It limits your agent's authority in only one specific way, clearly
stating that your agent does not have the authority to approve the direct
and intentional ending of your life. For example, your agent may not
authorize that you be given a lethal injection or an intentional drug
overdose. Furthermore, your agent may not direct that you be denied food
or fluids for the purpose of causing your death by starvation or
dehydration.
That limitation not only protects you, but it also protects your agent
from being pressured to authorize such actions.
The PMDD also has specific directions that are necessary in the current
medical climate. For example, some healthcare providers have taken it upon
themselves to put "do not resuscitate" (DNR) orders in place
without the patient's or agent's authorization. Similarly, some healthcare
providers, ethics committees and health facilities are making decisions
about what is "appropriate," "beneficial," or
"futile" based on institutional cost-containment or subjective
quality-of-life decisions, not on the basis of what is best for or wanted
by the patient.
The PMDD makes it clear that DNR orders and decisions about what is
appropriate, beneficial or futile are to be made only by your agent and
only if your are unable to make those decisions.
There is another aspect of the PMDD. As noted above, some states have
very specific requirements for a durable power of attorney for health
care. That is why the ITF distributes state-specific PMDDs for those
states as well as a Multi-State PMDD for use in other jurisdictions. (9)
With the benefits of the durable power of attorney for health care in
mind, questions remain: "Can a person be required to sign an advance
directive?" "Who needs an advance directive?" "Must a
healthcare provider honor all decisions made by a patient or a patient's
decision-maker?"
Can a person be required to sign an advance directive?
Federal regulations require every hospital or health program that
receives any Medicare or Medicaid funds to inform patients, upon
admission, of their rights regarding advance directives (10) and include
documentation in the patient's record whether or not the individual has an
advance directive. (11)
As a result, some facilities, particularly nursing homes, erroneously
tell patients that they must have an advance directive. And many
facilities assume that they are required to offer patients an advance
directive (usually a living will) to sign at the time of admission –
when the patient is naturally under stress and is filling out a myriad of
other paperwork. Sometimes patients who are anxious to complete admission
procedures sign every paper placed before them. This could result in
signing a living will without even realizing it until it's too late.
That's why it is extremely important to carefully read documents before
signing them.
Although it is certainly prudent to have an advance directive, both
federal (12) and state laws (13) prohibit health facilities
from requiring anyone to sign an advance directive.
If you or a loved one are told that an advance directive must be signed
before care and treatment can be given, courteously but firmly explain
that such a requirement is a violation of the law.
Recognizing that you cannot be compelled to have an advance directive
is important. Knowing who needs an advance directive is equally important.
Who needs an advance directive?
Many people assume that only the sick and elderly need advance
directives. But few people are aware that a carefully drafted durable
power of attorney for health care is vital for every adult – young or
old, healthy or sick, disabled or able-bodied.
For example, pregnant women assume that, if a medical emergency or a
traffic accident leaves them temporarily unable to make their own medical
decisions, their spouse or next of kin automatically has the authority to
do so. As explained above, in the section titled "Decision-making for
incapacitated individuals in the absence of an advance directive,"
such assumptions are, at best, naive.
A pregnant woman who signs a durable power of attorney for health care
like the PMDD is protected because she has given legal authority to
someone she trusts, someone who knows and agrees with her views and
values. The person she has designated can protect her life and that of her
unborn baby during any time she is not capable of making medical
decisions. The document would remain in effect even after the birth of her
child, unless she revokes it.
Planning in advance for a new baby includes not only buying a crib,
diapers and all of the other necessities, but also a protective durable
power of attorney for health care for the expectant mother.
Similarly, parents of college students take it for granted that, if
they are paying for their child's medical care, they always have the right
to make medical decisions for a son or daughter who is temporarily or
permanently unable to do so.
But it is possible that, in the absence of an advance directive,
parents of an ill or injured college student may not even be able to
obtain basic information about their child's condition. Ever since the
federal Health Insurance Portability and Accountability Act (HIPAA) went
into effect, some health facilities have refused to provide information to
anyone – even family members – about a hospitalized adult (anyone over
18 years of age) unless the patient has given written consent.
However, the person who is designated in a durable power of attorney
for health care does have the right to such information.
Young adults can designate a parent to make medical decisions so that,
in the event of a sports injury, illness or accident, someone who knows
and loves them will have the authority to protect their lives and well
being. That's why a protective durable power of attorney for health care
like the PMDD should be one of the necessities of dorm life.
People have fire insurance even though their houses may never burn
down. Likewise, competent adults should have a protective advance
directive even though they may never be unable to make healthcare
decisions for themselves.
Must healthcare providers honor all decisions made by a patient or a
patient's agent?
No. A healthcare provider or organization may decline to carry out
healthcare decisions made by a patient or a patient's designated agent if
the provider conscientiously objects to such care or treatment. However,
federal law requires that the patient or the patient's decision-maker be
provided with written policies at the time of admission of
any limitations on carrying out such decisions, including the range of
medical conditions or procedures affected by the conscience objection.
Additionally, the notification must cite state law that relates to
permitting those limitations. (14)
On occasion, healthcare providers implement what have become known as
"futile care" policies. Under such policies, the provider may
determine that a particular treatment is not appropriate for a patient.
There would not be a problem if such policies addressed treatments that
were physiologically futile. (e.g., If a patient decides that her left arm
should be amputated to improve her eyesight, the decision would be
physiologically futile.) But, with increasing frequency, futile care
policies are being applied to patient's whose very lives are considered
futile. (15)
Additionally, there have been cases where healthcare staff has made
mistakes, necessitating treatment that the facility subsequently declares
to be futile treatment.
For example, in a current Texas case, a young woman who had undergone a
Caesarean section developed complications. According to court papers filed
on her behalf, a tracheal tube was inserted to allow her to breath. The
breathing tube became dislodged, interrupting her oxygen intake, but
nurses failed to notice this until she was unresponsive and had sustained
brain damage.
Two weeks later, the hospital futility review committee decided that
life-sustaining treatment was futile and informed the family that it would
be removed in ten days.
The family's attorney told the Houston Chronicle, "This
care raises questions of whether the law might be used to bury
mistakes." (16) At the time this report is being written, the
facility had agreed to drop its plans to stop treatment and to help the
woman's family seek a long-term care facility where the woman would be
transferred.
Texas law is the most draconian regarding "futile care." It
permits a hospital committee to decide that a patient's care is futile.
Following that finding, the patient or decision-maker has ten days, during
which the "futile care" must be provided, to find another
facility that will take the patient. If another facility cannot be found
within that time, the facility may withdraw the "futile care."
(17)
Because of cases like this, Texas lawmakers are expected to consider
changing the law in the upcoming legislative session.
Most other states, as well as Texas, do permit healthcare providers to
refuse to honor a patient's decision or that of the patient's designated
decision-maker. But, as noted above, under federal law, the healthcare
provider in every state must inform the patient or decision-maker
of such policies at the time of admission.
Often, healthcare providers do not follow federal requirements.
Instead, they attempt, by intimidation, to force a patient or
decision-maker to accept the provider's decision. That's why it is
necessary to know your rights, to insist that the law be followed and, if
necessary, engage legal counsel. Frequently, a discussion with a friendly
local news reporter can serve as a catalyst that leads the healthcare
provider to "remember" to follow the law.
IF IT'S LEGAL, IS IT ETHICAL?
