FAQ (Frequently Asked Questions)

Why do I need to make advance directives when I am healthy right now?

Advance directives usually are either a health care proxy or a living will.  They protect the treatments you want and prevent treatments you do not want having once you lose the ability to make decisions yourself.  Advance directives need to be made before your ability to make decisions begins to deteriorate. If you put off the decision, then you may become sick before you are able to make your wishes clear.  You are in complete control of your advance directives and may change them at any time. 

Who should I choose to be my health care agent?

You should choose a family member or close friend who:

• Is at least 18 years old
• Knows your wishes about medical treatment
• Will work hard to honor your wishes
• You can communicate openly with
• You trust to do what is best for you
• Lives close by or would be willing to come if needed
• Can handle potential conflicts between your family and friends

Who can't I choose to be my health care agent?

You can not choose someone who is:

• your doctor (unless your doctor is your spouse or your relative)
• an operator, administrator, or employee of the hospital or nursing home where you are admitted (unless they are a relative or you appointed them before
  your admission

When do my advance directives begin to work?

Your advance directives only begin to work once you lose the ability to make medical decisions for yourself.  If you maintain capacity, then you do not need to worry about someone else making decisions for you. 

In New York State, what is the difference between an advance directive and a MOLST?

An advance directive begins to work once you lose capacity.  The MOLST form makes decisions that apply right now as well as in the future.

I am not ready to make these decisions, what should I do?

Even if you are not ready to sign forms, you should still discuss your wishes and values with your loved ones.  If you do not have an advance directive but lose capacity to make decisions for yourself, your doctors will likely speak to your love ones to figure out what they think your wishes would be.  You would be helping them a lot if they knew more about your values and wishes.

Is a health care proxy the same as a living will?  Which should I do?

They are not the same and you should consider filling out both if you are able to.  A living will is more limited than a health care proxy because it is restricted only to the specific situations that you mention in your document.  A health care proxy has greater flexibility because your loved one will be able to interpret your wishes to apply to circumstances you may not have thought of before.

Where do I keep the documents I have signed?

You should keep a copy of any documents you signed.  You should also give a copy to your doctor, lawyer, and any family or close friends who you wish to keep involved in your decision-making.  You may want to keep a copy in your wallet and be sure to bring it to you whenever you go to the hospital or see a doctor.

Who makes decisions about organ and tissue donation?

If you wish to donate organs, you should document your preferences as well as discuss it with family members, as they will ultimately have to make these decisions under these circumstance since you will not be able to at that point.  In New York State, your health care proxy will not be able to make the donation decision because the proxy’s authority is exclusively about medical decisions and does not included questions about organ donation.  It is always wise to discuss your preferences about organ donation with your health care proxy as well as your family, because a consensus among all family members about your wishes and preferences is needed for donation to occur.

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Glossary of Terms:

Advance Directives:

A patient’s health care plan for the future in case he or she is unable to make medical decisions; it only can be used in this situation.   The goal of advance directives is to make sure the patient’s wishes are followed if he or she cannot speak for him or herself.  They can be changed at any time.  "Advance directives" is a big term which might include a health care proxy, living will, power of attorney, or code status.  Laws regarding advance directives may differ from state to state.

Health Care Proxy/Agent:

A patient can choose a spokesperson (known as a Health Care Proxy) whose job it will be to carry out and follow the patient’s wishes in the event the patient is too ill to make medical decisions for himself.  In most states, there must be a legal document to assign a spokesperson or health care proxy.  An alternate person can also be assigned in case the primary health care proxy is unavailable.  Requirements for documenting the naming of a health care proxy differ from state to state. 

In New York State, you do not need a lawyer or a notary public to fill out these forms, but it does require two adult witnesses who are not the patient or health care proxy.

Click here to create you own health care proxy.

Choosing a Health Care Proxy:

A health care proxy must be a competent adult at least 18 years old.  It is important to discuss your wishes and beliefs with this person before you become sick.  This person should know you well and be available to come to the hospital when you become sick.  It is the job of the health care proxy to represent your wishes and values, and not necessarily their own.  It is therefore important that you choose carefully, and talk things over with your health care proxy in advance.  It may be difficult for some people to follow your wishes, so pick someone who can handle this responsibility. 

Living Will:

A living will is a legal document where a patient writes down his or her wishes about medical care in case the patient becomes unable to make their own decisions in the future.  Unlike a health care proxy where you are choosing a person to represent your wishes and values if you cannot express them yourself, a living will involves setting out the kinds of treatments you would or would not want under these same circumstances.  It can be very specific, or it can outline a general philosophy.  A patient can have both living will and health care proxy.

In New York State, you do not need a lawyer or a notary public to fill out these forms, but it does require two adult witnesses who are not the patient or health care proxy.

Click here to create your own living will.

Power of Attorney:

Power of Attorney is a legal term when one person gives legal authority to another person to handle business affairs such as finances or general well being.  Medical decisions are not included with this power in most states.

Guardianship:

Guardianship is a legal term where a court appoints a spokesperson to make decisions for another person who is not capable of choosing such a person themselves.  The guardian has authority to make decision regarding the person’s residence, healthcare, and general well-being. 

MOLST form (Medical Orders for Life-Sustaining Treatment):

MOLST stands for Medical Orders for Life-Sustaining Treatment.  It is a New York State specific form that hospitals use to document patient’s wishes regarding cardiopulmonary resuscitation, use of breathing machines and other life sustaining treatments such as antibiotics, future hospitalizations, artificial nutrition.  It is a pink form that can be filled out by a patient or a health care proxy regarding the patient’s wishes for resuscitation.  The MOLST form does not take the place of a health care proxy or living will.  It sets out any limits you want to set on your medical treatment based on your current situation.  This form applies to all settings, including hospital, home, or nursing home.  .

CPR/Resuscitation:

CPR (CardioPulmonary Resuscitation) is a group of medical treatments that are done when a person’s heart stops and/or breathing stops.  A trained professional will attempt to restart the heart and lungs using techniques such as mouth-to-mouth breathing, pushing down on the chest to circulate blood (chest compressions), electric shock to the heart (defibrillation), or drugs to restart the heart.  CPR can be life-saving especially for young, healthy people but is much less effective when a person has serious chronic illness.

Mechanical Ventilation/Intubation:

Mechanical Ventilation is when a machine is used to help a patient breath.  In order for the ventilator to work, a tube must be placed down a patient’s throat in a process called intubation.  It can be very uncomfortable having a tube in the throat, so patients are often given medication to sedate them.

Artificial Nutrition/Tube Feeding:

When a patient is unable to feed him or herself, sometimes other methods are utilized to try to feed them.  There are two main types of artificial nutrition available: Feeding tube (a thin tube that goes directly into the stomach either though the patient’s nose or directly through their stomach wall using a relatively minor surgical procedure) and Parenteral (which directly means through the blood vessels).  Generally, doctors prefer to use enteric feeding when possible because it is more natural, usually safer for the patient, easier to do, and less expensive.  Enteric feeding can be done through a tube going down the nose or mouth, but can also be done through a surgically placed tube directly into the stomach or intestine.

Code Status/Full Code/DNR/DNI/Trial of Intubation:

Code Status is a type of advance directive concerning what to do if a patient’s heart stops and/or the patient stops breathing.  These decision effect whether a patient will receive cardiopulmonary resuscitation (CPR) or go onto a breathing machine (become intubated and mechanically ventilated).  Although a patient may choose whatever they want for their code status, most people’s decisions fall into four categories listed below.  If there is uncertainty about a patient’s code status, then medical professionals are to assume the patient is a full code and will do everything possible to maintain breathing and a heartbeat.

1. Full code – This means a patient wants everything done in the event that his or her heart stops.  Possible procedures include mouth-to-mouth, chest compressions, defibrillation (electric shock), intubation(a tube placed to help a patient breath), and drugs given to try to restart the heart.
2. DNR (Do Not Resuscitate)– This means a patient does not want some of the invasive procedures done to try to restart the heart. Typically a patient does not want chest compressions, defibrillation, or drugs to restart the heart.  DNR in itself still leaves open the possibility of going onto a breathing machine if their breathing fails unless those limits are also set .
3. DNR with a trial of intubation – This is similar to DNR except the patient has decided that he or she does not want to be intubated for a long time.  Therefore, the patient will receive a short (usually a few days to a week) trial of intubation where mechanically ventilation can be withdrawn if it appears unlikely that the patient will recover the ability to breathe on his own in a reasonable period of time.
4. DNI (Do Not Intubate) – This means that the patient does not want to go onto a breathing machine (intubation and mechanical ventilation) if their ability to breathe on their own fails.  Usually DNR directives accompany DNI directives, since intubation and artificial ventilation are generally a part of CPR.  When a patient is DNI, medical professionals usually are limited to using oxygen and non-invasive masks to help support the patient.

Nonhospital Do Not Resuscitate (DNR) Order Form:

DNR orders should apply in all settings – hospital, nursing home, or home, as well as during transport in between.  In New York State, if the MOLST form designates DNR, it now applies across settings.  Prior to 2008, the MOLST form was not recognized outside of the hospital, so patients who wanted DNR status in other settings needed a form that covered these other settings.  New York State has an official form to serve as a nonhospital DNR form for areas that do not use the MOLST form.

Palliative Care:

Palliative Care is a subspecialty of medicine available in many hospitals that deals primarily with:

1) treating pain and other uncomfortable symptoms

2) assisting patients and families with difficult medical decision making

3) providing added support for patients and families.

Palliative care is often provided along side very aggressive medical care (transplantation, surgery, chemotherapy), but it sometimes becomes the exclusive focus of treatment as patients approach the end of their lives.  In this latter circumstance, patients sometimes transition to hospice care, and palliative care can help with this transition.  But the majority of the time, palliative care works to improve the patient’s quality of life while they simultaneously receive the best possible treatment of their underlying disease. 

Goals of Care:

"Goals of care" is a term used by medical professional to discuss the overall direction of medical care.  When the goal to return the patient back to normal or close to normal health, this is known as Curative Care.  Sometimes cure is not possible, but the patient’s goal may be to control the disease for as long as possible.  In both of these circumstances, maximizing quality of life may be part of the goal, but it is along side other priorities.  As disease progresses, and treatments become less effective, sometimes enhancing quality of life becomes the primary objective.  This is sometimes referred to as Comfort Care.  Many patients who desire Comfort Care only are referred for treatment by hospice programs.

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