Adults in New
York State have the right to refuse medical treatment, including
life-sustaining treatment, as protected by our federal and state laws.
This includes your right to request or consent to treatment, to refuse
treatment before it has started, and to have treatment stopped once it
has begun. However, unforeseen illness or injury could render you
unable to communicate your wishes about medical treatment.
If you desire to refuse treatment, you should plan ahead
because, without written proof of your wishes, your family may not be
allowed make to medical decisions for you. In that instance, the state
would act as your decision maker by default. You can ensure that your
medical treatment wishes are respected by filing an advance directive.
What is an Advance Directive?
An advance directive is a legal document allowing you to give
instructions to your doctor and other medical professionals about the
types of medical treatment you wish to receive in the event that you
become unable to make those decisions for yourself. It can take the
form of a health care proxy, which appoints someone to make medical
decisions for you, or a living will, which leaves specific instructions
for your doctor to follow. An advance directive assists your doctor and
hospital by resolving any ethical questions associated with your
treatment. It also assists your family and friends by relieving them of
any uncertainty or guilt surrounding your medical treatment. An
advanced directive can be changed or cancelled at any time.
Health Care Proxy
A health care proxy enables you to appoint someone you choose to make
medical decisions for you in the event that you become unable to make
those decisions yourself. You can appoint this person by filling out
and signing a form called a Health Care Proxy, which should be provided
by your hospital upon admission. This form can also be obtained from
your health insurance provider, the New York State Department of
Health, your doctor, or your lawyer. A health care proxy may also be
referred to as a durable power of attorney for health care, a medical
power of attorney, or the appointment of a health care agent.
Living Will
If you do not want to appoint someone to make medical decisions on your
behalf, you can leave instructions about your medical treatment in
advance through a living will. General instructions, however, may not
be enough to protect you from treatment you may not wish to receive
because of medical conditions not specifically accounted for in your
living will. Your instructions must clearly state the kind of treatment
you would not want to receive and the condition in which you would
refuse such treatment because, unlike the health care proxy, no one can
interpret the living will for you.
Which Advance Directive best protects your treatment wishes?
To protect your treatment wishes, it is generally considered best to
appoint someone as your health care proxy to advocate for you. You can
give the person you select as much or as little authority as you want
when making treatment decisions on your behalf. For example, you can
include a number of instructions that your proxy must follow, while
leaving other medical decisions to his/her discretion or understanding
of your wishes. If you would like your proxy to make decisions about
withholding or withdrawing life support, such as artificial nutrition
and hydration, you should make that clear on your proxy form. The
advantage of having a proxy is that he/she has the flexibility to make
decisions for conditions that you might not have anticipated. Your
proxy can talk with your doctor about your changing medical condition,
deciding to authorize or have treatment withdrawn as circumstances
change. In addition, your proxy would be able to clarify vague language
within your treatment instructions because of his/her knowledge of the
quality of life important to you.
Who can be a health care proxy?
You can appoint any adult to be your health care proxy, with the
exception of your doctor, an employee of your doctor or an employee of
your hospital or nursing home, unless related to you. This person need
not be a family member and cannot be held liable for the costs of your
care just because she/he is your proxy. Make sure that the person you
appoint feels comfortable being your proxy, understanding your
treatment wishes and the quality of life important to you. Since it is
impossible to foresee every type of circumstance or illness, it is
essential to consider the general quality of life that is important to
you. In doing this, think about your overall attitude toward life,
including the activities and situations you enjoy, how you feel about
losing your independence and control, and how your religious and moral
convictions affect your attitude toward health, illness, dying and
death. Discussing the reasons for your treatment decisions with your
proxy will relieve guilt and uncertainty that he/she might experience.
Your health care proxy should be an assertive person who is
willing to actively advocate on your behalf. To make informed
decisions, she/he needs to understand your rights and be willing to
learn more about your medical condition. Your proxy must not be afraid
to ask your doctor questions about your condition and prognosis. Since
your doctor's definition of recovery might be very different from your
own, your proxy must ask about the goals of the treatment and determine
whether it would prove to be a benefit or a burden to someone in your
condition. Many doctors are afraid to remove treatment, not wanting to
be sued by a patient's family. If the doctor is unresponsive to your
questions or concerns, your proxy should seek the assistance of a
Patient Representative or other hospital administrator, such as the
chief of medicine, to improve communication with your doctor.
Decisions about Life Support
Understanding life support measures is essential when filing an advance
directive and being a health care proxy. Life support is used to
replace or support a failing bodily function. Patients are often put on
life support temporarily until their illness is stabilized or cured and
their body resumes normal functioning. However, there are cases in
which the body never regains the ability to function without life
support. To make an informed decision about life support, one must
consider the benefits as well as the burdens of the treatment being
offered. A treatment may be considered beneficial if it relieves
suffering or restores body functioning, whereas the same treatment
might be considered burdensome if it causes pain or prolongs the dying
process. In your advance directive, you can state that you want certain
life support measures used for a specific length of time, with their
continuance based on improvement in your condition. When making
decisions about certain treatments, make sure you understand why the
treatment is being offered and what benefits might result from it.
Life support systems
Mechanical ventilation is used to support or replace the function of
the lungs. A machine called a ventilator or respirator forces air into
the lungs through a tube inserted in the nose or mouth and down into
the windpipe. Mechanical ventilation can be used to assist patients
with short-term problems as well as those with irreversible respiratory
failure. Some patients on long-term mechanical ventilation are able to
enjoy a quality of life important to them. For others, however,
mechanical ventilation simply supplies oxygen, while doing little to
improve the patient's underlying condition. When deciding upon
treatment instructions, specify whether you would want mechanical
ventilation if you would never regain the ability to breathe on your
own.
Artificial nutrition and hydration (tube feeding)
replaces ordinary eating and drinking with a mix of nutrients and
fluids placed by a tube directly into the stomach, the upper intestine
or a vein. Artificial nutrition and hydration can save one's life when
used until the body heals, with long-term treatment being administered
to patients with serious digestive disorders that impair their ability
to digest food. Long-term use of feeding tubes is also administered to
patients with irreversible or near-death conditions, possibly
prolonging the dying process. Without specific instructions in your
advance directive about the removal of artificial nutrition and
hydration, your health care proxy will not be allowed to refuse the
treatment for you. Therefore, be sure to list specific instructions
about the treatment in your advance directive, for it has been the
source of many legal disputes.
Organ and Tissue Donations
A health care proxy may contain your wishes regarding organ and tissue
donations. However, failure to include this information may not be
taken as a wish to not donate.
Cardiopulmonary Resuscitation and Do Not Resuscitate Orders
Cardiopulmonary Resuscitation (CPR)
is emergency treatment used to restart a patient's heart and lungs when
suffering from heart failure. CPR may consist of simple mouth-to-mouth
breathing and external chest compression, or may involve electric
shock, injection of medication into the heart and, in extreme cases,
open chest heart massage. When used successfully, such as in response
to a heart attack or drowning, CPR restores heartbeat and breathing,
often allowing patients to resume their previous lifestyle. However,
the success of CPR depends on a patient's overall medical condition.
While age alone does not determine whether CPR will be successful, the
illnesses and frailties that come with age often reduces its success
rate. In an emergency, it is assumed that all patients would consent to
CPR. However, if a doctor determines that CPR will not work, it is not
provided. When patients are seriously or terminally ill, CPR may not
work or may only partially work, leaving the patient brain-damaged or
in a worse medical condition than before experiencing the heart
failure.
A Do Not Resuscitate (DNR) Order instructs your
doctor and other medical professionals not to perform CPR on a patient
if his/her breathing or heartbeat stops. A DNR Order must be issued by
your doctor and placed on your medical chart. A DNR Order is different
than a living will and health care proxy in that it is a decision about
CPR alone and does not relate to any other treatment. If a patient is
in a nursing home, a DNR Order tells staff not to perform resuscitation
and not to transfer the patient to a hospital for CPR. An order issued
in a hospital or nursing home will not apply at home. Therefore, you,
your health care proxy, or closest family member must specifically
request a home DNR Order.
An adult patient may consent to a DNR Order by informing a
doctor verbally or in writing, such as in a living will. If you become
unable to decide about your medical treatment and you did not tell your
doctors or others about your wishes in advance, a DNR Order can be
written with the consent of someone chosen by you in a Health Care
Proxy form. It is better to appoint one person to decide about CPR for
you, as there can be disagreement among family members. Your closest
relative or a close friend can consent to a DNR Order only when you are
unable to make medical decisions for yourself and have not appointed
someone to decide for you. This person can consent to a DNR Order when
you are terminally ill, permanently unconscious, when CPR would impose
an extraordinary burden given your condition, or when it would be
medically futile.
Doctors and Advance Directives
By law, doctors are required to follow advance directives, except when
to do so would be against their moral or ethical beliefs. If a
patient's doctor disagrees with the patient's living will or health
care proxy's decision about treatment, he/she must either refer the
matter to dispute mediation within the hospital or transfer the patient
to another doctor's care. When referred to dispute mediation, the
Ethics Committee of the hospital usually holds a meeting with the
patient's family and doctor to determine if, according to the patient's
advance directive, the withdrawal of treatment would coincide with the
patient's treatment wishes. If the Ethics Committee determines that the
advance directive authorizes the refusal of treatment, the doctor must
either adhere to the decision or transfer the patient to another
doctor's care. If the Ethics Committee determines that the advance
directive does not authorize the refusal of treatment, the proxy or the
family of the patient can pursue the matter further with the hospital
administration or take the hospital or doctor to court.
Hospital policies concerning advance directives
Some private hospitals refuse to follow advance directives by including
a conscience clause in their advance directive policy. A conscience
clause is a policy statement exempting a private hospital from
following advance directives that are not consistent with its
religious/moral beliefs and operating principles. According to federal
and state law, hospitals must inform patients of their advance
directive policies, including conscience clauses, upon admission. Many
Catholic hospitals, stating that they operate according to a duty to
preserve life, object to treatment or omission of any treatment which,
by itself, would cause death. The withholding or withdrawal of
artificial nutrition and hydration is often mentioned in such
conscience clauses. For instance, when artificial hydration is removed
from a terminally ill patient, dehydration, rather than the terminal
disease might be viewed as the cause of death. In that case, artificial
hydration might not be withheld or withdrawn. If a hospital cannot
honor a patient's advance directive because of a conscience clause, it
must transfer the patient to a facility that will honor those treatment
wishes. It can be difficult, though, to find a facility willing to take
a patient specifically with the intention of removing his/her life
support. Therefore, if you have decided to file an advance directive,
find out if your hospital has any conscience clauses in its advance
directive policies before you are admitted.
It is considered legally appropriate to discontinue medical
treatments that are no longer beneficial to a patient. Although a
distinction is often made between not starting (withholding) and
stopping (withdrawing) treatment, no legal difference exists between
the two when it is in accordance with a patient's wishes. The
underlying disease, not the withholding or withdrawal of treatment, is
seen as the cause of death.
How to file an Advance Directive
To file an advance directive, blank Health Care Proxy forms and living
wills can be obtained from the New York State Department of Health or
legal form stores. Ask your doctor to explain any treatments or
procedures that seem confusing before you complete your advance
directive and determine how these treatments would affect the quality
of life important to you. Once completed, give a copy of your advance
directive to your doctor for your medical file, and make sure he/she is
willing to follow it. Make additional copies for your proxy and family
members.
When filling out a living will, the need for clear, specific
instructions cannot be overstated. These instructions can take up as
much space as necessary in the living will. You must list the kinds of
treatment you do not wish to receive along with the medical conditions
in which you would refuse such treatment. After you sign your living
will, two witnesses over 18 years of age must also sign the document.
After it is completed, it is advisable to have your living will
notarized.
The Health Care Proxy form contains easy-to-follow instructions and can
be completed within a matter of minutes. If you do not list any
limitations in the optional instructions section of the form, your
proxy will be allowed to make all medical decisions on your behalf, not
including the decision to refuse artificial nutrition and hydration. It
is extremely important to state whether you authorize your proxy to
refuse artificial nutrition and hydration, because, without these
instructions, your proxy will not be allowed to make those decisions
for you. When completed, you must date and sign the proxy, being sure
to include your address. If you are unable to sign yourself, you may
direct someone else to sign in your presence. Two witnesses at least 18
years old must sign your proxy. Neither the appointed proxy or
substitute proxy can sign as a witness. You do not need a lawyer to
fill out the form, but you might want it notarized for extra
protection. To cancel the proxy, simply fill out a new form and change
the appointed person or any of the treatment instructions. Be sure to
give your doctor and family copies of the new form. It is best to
appoint your agent in advance, not just when you are planning to enter
the hospital.
For more information, contact your local hospital to find out
if it conducts any seminars on advance directives, or the non-profit
organization Partnership for Caring. Partnership for Caring provides
information and advice about end-of-life care and patients’ rights. To
contact Partnership for Caring, call (800) 989-9455 or (212) 870-2003.
Write to Partnership for Caring, Inc., 475 Riverside Drive, Suite 1825,
New York, NY 10115. You can also visit their World Wide Web site at
www.partnershipforcaring.org.
