Living Will & Health Care Proxy

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Health Care Decision on Your Behalf

How will decisions be made about your health care if you are unable to communicate your wishes? Will the decisions be those that you would have wanted? Who will the decision-makers be? How will they know what to do?

These questions are frequently asked by senior citizens, their families and their health-care providers. But they can also be important to the young when faced with an unexpected accident or debilitating illness. That is just what happened to Terry Schiavo.

When a patient is too sick to speak or express his own desires about medical treatment, the family and doctors may be in the difficult position of guessing – and even disagreeing about – what treatment the sick person would have wanted. Feelings about these issues involve deeply held spiritual, medical and often religious, beliefs. Many times family members cannot agree and the decision can tear apart a family. The Schiavo family’s crisis and controversy unfolded in front of the media and the entire world. At a time of tragedy and crisis, families need to support one another, not feud over emotional and painful decisions.

It is important to consider what kinds of medical treatment you would want - or not want - if you should become unable to make health care decisions for yourself. You should then put those choices in writing, in a "living will" or a "health care proxy." Combining a living will with a health-care proxy is the best way to present "clear and convincing evidence" about the patient’s decisions.

Without a health care proxy, your doctor may be required to provide you with medical treatment that you would have refused if you were able to do so. For example, if you were in a coma or vegetative state with no hope of recovery, or terminally ill, the doctor may still be required to provide “heroic” measures to sustain your life, respirators, feeding tubes and other treatments. A health care proxy lets YOU make your own medical decisions, rather than to leave them to doctors, lawyers and health care professionals who likely don’t know the patient and his wishes.

You may wish to talk first with your doctor, religious advisor, family or other people before giving instructions to your agent.

What if Terry Schiavo was in New York?

New York is one of two states that does not recognize the authority of family members to make decisions for incapacitated adults. Only through a health care proxy can your medical decisions be made known to your doctors and health care providers through an appointed agent.

Unless there is clear and convincing evidence, the state will not withhold life-sustaining treatment. If Terri Schiavo was in New York, the state position would be to give her the feeding tube. That was because she did not have her wishes in writing and there was no clear and convincing evidence of her wishes. If you recall, her parents and husband did not agree on what she would have wanted.

What is a health care proxy?

The New York Health Care Proxy Law (Public Health Law effective January 18, 1991), allows you to appoint someone you trust - for example, a family member or close friend - to decide about treatment if you lose the ability to decide for yourself. You can do this by using a Health Care Proxy to appoint your "health care agent."

You can give the person you select as little or as much authority as you want. You can allow your health care agent to decide about all health care or only about certain treatments. You may also give your agent instructions that he or she has to follow. Your agent can then make sure that health care professionals follow your wishes and can decide how your wishes apply as your medical condition changes. Hospitals, doctors and other health care providers must follow your agent's decisions as if they were your own.

The health care proxy does not give you agent the power to make  non-health care decisions for you (ex. financial decisions).

Health Care Proxies and Living Wills

Living wills and health care proxies are also commonly referred to as advance health care directives and durable powers of attorney for health care. All three terms are recognized in federal Medicaid and Medicare Law Title 42 – Public Health Chapt. IV, Part 489, Section 489.100 or 42 CFR 489.100 (2003). New York has a statutory form (one that is provided in the laws) for health care proxies. Use of the form is not mandatory, but it does comply with the law and is legally valid.

Federal law’s Patient Self Determination Act (PL 101-508 § 4206 and 4751) requires health care providers to document advance directives in medical records.

In 1997, the Supreme Court of the United States reaffirmed the constitutional right of competent adults to refuse unwanted medical treatment in the cases of Washington v. Gluckberg and Vacco v. Quill. The Supreme Court stresses the use of advance care directives as a means of safeguarding that right should adults become incapable of deciding for themselves.

Is a living will the same as a health care proxy?

No! A health care proxy allows you to choose someone you trust to make treatment decisions on your behalf. A living will is a document that provides specific instructions about health care treatment. In a living will, you declare your wishes to accept or refuse life-sustaining treatment under certain circumstances. With a health care proxy, your health care agent can interpret your wishes as medical circumstances change and can make decisions you could not have known would have to be made. The health care proxy is just as useful for decisions to receive treatment as it is for decisions to stop treatment. In fact, it is recommended that personal instructions in your Health Care Proxy be limited to provide your Agent the greatest flexibility to respond to changes in your medical condition. Detailed instructions in the Health Care Proxy itself might unintentionally limit your Agent’s ability to act in your best interest.

Is a living will binding?

Yes. The highest Court in New York has been held that a patient’s right to decline treatment is guaranteed by the common law. Although New York does not have a specific statute recognizing Living Wills (as do most other states and the District of Columbia), the courts in New York have upheld those expressions of intent that meet the “clear and convincing evidence” test. The Supreme Court of the United States, in the Cruzan case, stated that the rights of individuals who declared in writing their objections to life sustaining treatment would be upheld.

What is the legal basis for a living will in New York?

The New York State Bar Association position is that the common law has long recognized that a competent adult has the right to determine what will be done to the person or body, including the right to accept or decline medical treatment. This is known as the right of self-determination. Included in this right is the right to accept or decline medical treatment. Although there are certain limited exceptions when this right cannot be exercised (as, for example, for protection of minor children, or to prevent or assist suicide), the general rule is to allow each person the right of self-determination. Courts have held that these expressed wishes of a competent adult should be honored even when he or she is no longer competent. In the Cruzan case, the Supreme Court of the United States stated in 1990 that a competent person has a liberty interest under the due process clause of the Constitution in refusing medical treatment.

What is the test that must be met?

The New York Bar Association explains that, in New York, it is necessary that your wishes be established by clear and convincing proof,” that is, it must be shown that a person who has become incompetent had previously given clear and unequivocal instructions that he or she wanted life-sustaining measures to be terminated. In Matter of O’Connor, the New York Court of Appeals in 1988 held that the patient’s statements about not being maintained on artificial life support systems were to unspecific and casual so as to constitute “clear and convincing proof that the patient had made a firm and settled commitment, while competent, to decline this type of medical assistance under circumstances such as these”. The right of the state to impose such a strict test has been upheld by the Supreme Court in Cruzan.

To meet this “clear and convincing” proof test, your wishes must be expressed clearly and unequivocally. Although your wishes may be stated orally, and might be proven by testimony or conversations, those wishes which are expressed in writing are preferable and much more convincing. The Living Will is the ideal document to express your wishes.

What is a living will?

A living will can take many forms. Often a living will expresses general principles, such as the preference that treatment should be with held if it would artificially prolong life. Other people list the specific kinds of treatment they would accept or reject, such as renal dialysis, chemotherapy, "do not resuscitate" orders, or artificial nutrition and hydration (also known as "tube feeding"). If you decide to write a living will, be as clear and specific as you can about your preferences for medical care, and be sure that it expresses your wishes accurately and completely.

Do I need both documents?

No, they are separate legal instruments. However, it is recommended that you consider completing both. If you complete a Health Care Proxy form, but also have a living will, the living will provides instructions for your health care agent, and will guide his or her decisions.

Because artificial hydration and nutrition decisions cannot be made by your agent unless he/she has specific knowledge of your wishes, a living will helps establish the necessary “clear and convincing evidence” necessary to withhold these life sustaining treatments. Your views on this subject CAN be expressed orally and still be effective, however, it is certainly much better to put them in writing.

Is a Power of Attorney the same as a Health Care Proxy?

No! Powers of Attorney are separate legal instruments and specifically state that they do not apply to medical decisions. A Power of Attorney primarily authorizes the agent to make financial decisions for you.

Execution of a Durable Power of Attorney for property management allows your Agent-In-Fact (“POA”) to provide funding for medical care and treatment. You may consider also executing this document.

You may select the same agent for both your health care and financial decisions, but you need not – you can choose separate agents for each function.

Why (and who) should I choose as my health care agent?

If you become too sick to make health care decisions, someone else must decide for you. Health care professionals often look to family members for guidance. But family members are not allowed to decide to stop treatment, even when they believe that is what you would choose or what is best for you under the circumstances.

You can name any adult to be your Health Care Proxy. Adults without capacity cannot be appointed. You should first consider what is most important to you about your health. You should select someone you trust. You should talk to that person about your wishes in regard to your health care. Importantly, you should discuss with your agent what treatment you would or would not want in the event that you had a terminal illness.

Your attending physician cannot be your Agent.

Unless related by blood, marriage or adoption, your Agent cannot be an operator/administrator or employee of a health care facility in which you are a resident or have applied for admission.

Appointing an agent lets you control your medical treatment

  • allowing your agent to stop treatment when he or she decides that is what you would want or what is best for you under the circumstances;
  • choosing one family member to decide about treatment because you think that person would make the best decisions or because you want to avoid conflict or confusion about who should decide;
  • and, choosing someone outside your family to decide about treatment because no one in your family is available or because you prefer that someone other than a family member decide about your health care.

Things to consider when choosing a health care agent

If you do not trust another person to make medical decisions on your behalf, a health care proxy may not be for you.

Is your potential Agent:

  • Able to separate his/her own feelings from your own, respect your wishes even if they are different from what they used to be or if he/she thinks they are unusual or foolish
  • Close by and willing/able to come now and in the future
  • Willing to talk about your sensitive wishes and impending death; stay with you even when the going gets rough; allow you to talk about unfinished business, ask for forgiveness, offer apologies, share fears and sorrows
  • Willing and able to work with health care providers
  • Willing and able to handle potential conflict between family and friends
  • Able to care for him/herself so that he/she is not drained by your illness
  • Willing and able to handle responsibility, seek out information about your illness and what to expect
  • Willing to acquaint him/herself with the social norms of your culture and religion

Do I need alternate agents?

It is not a requirement for you to choose an alternate agent.  Do not feel compelled to appoint an alternate agent if you do not have a secondary person whom you can trust to make health care decisions for you.  If you do have such a person however, it is helpful to appoint that person as an alternate agent in case your original agent’s authority is revoked, or your original agent is not willing, able, or reasonably available to make health care decisions for you.  In such event, your first alternate agent would step in to make health care decisions for you.

You can also appoint a second alternate agent in case both your original agent’s AND your first alternate agent’s authority is revoked, or if neither is willing, able , or reasonably available to make health care decisions for you.

Can I appoint more than one agent to act at one time?

The New York State Department of Health has stated that each person can appoint only one agent. While it is not clear that the statute was intended to have this result, most commentators have concluded that the statute precludes more than one agent acting at the same time, and recommend that only one person be authorized to act. The statute does allow for the appointment of a alternate agent, and you can and should provide in the Proxy for another person to act if the person you have appointed is unable, unwilling or unavailable to act as your health care agent.

I have chosen an Executor in my will. Should I make that person my health care agent also?

Not necessarily. You should consider each task independently. It is common that one person is appointed to take care of legal and financial affairs (Ex. Executor, Power of Attorney) while a different person is appointed for health care decisions. These are important decisions and you should consider the circumstances (financial, time, emotional, geographic) of each person and their ability to carry out your wishes. This is not an honorary appointment. For example, you may love your eldest daughter dearly, but she might not be a good choice for health care proxy because of the emotional burden involved in making decisions that would end your life. You might love your eldest son dearly, but he is in the military and might be difficult to reach in an emergency situation.

Issues that you should cover

  • Artificial hydration and nutrition
  • Cardiac resuscitation and DNR Orders
  • Mechanical respiration
  • Antibiotics
  • Pain medication
  • AVOID ambiguous terms like “heroic measures” or “extraordinary treatments”

How can I appoint a health care agent?

All competent adults can appoint a health care agent by signing a form called a Health Care Proxy. In New York, you don't need a lawyer, just two adult witnesses. Notarization can be helpful in establishing “clear and convincing evidence,” but is not required. The person appointed as your agent or alternate cannot be one of the witnesses. It is recommended that at least one of the witnesses be an individual who is not related by blood, marriage or adoption, nor entitled to any portion of the patient’s estate upon death of the patient under an existing will or the state’s laws of intestacy.

When would my health care agent begin to make treatment decisions for me?

A Health Care Proxy can last until your death and it will continue to be valid even after you become incompetent or incapacitated. Your health care agent would begin to make treatment decisions after doctors decide that you are not able to make health care decisions. As long as you are able to make treatment decisions for yourself, you will have the right to do so. The patient’s attending physician makes the capacity determination, to a reasonable degree of medical certainty.

A second doctor’s opinion that the patient lacks capacity must be obtained before life sustaining treatment may be withheld.

If you are hospitalized and your lack of capacity results from mental illness, then a Board certified psychiatrist or neurologist must provide a second opinion before life sustaining treatment may be withheld.

What decisions can my health care agent make?

Unless you limit your health care agent's authority, your agent will be able to make any treatment decision that you could have made if you were able to decide for yourself. Your agent can, in accord with your wishes and interests

  • agree that you should receive treatment,
  • choose among different treatments,
  • and decide what treatments should not be provided.

What about feeding tubes?

A Health Care Proxy applies to all types of medical care except artificial nutrition and hydration (these are more commonly referred to as feeding tubes). Artificial nutrition and hydration will not be withheld or withdrawn unless your wishes in this regard have been made known to your agent. Usually you will put a statement in your Health Care Proxy that indicates that you do or do not want artificial nutrition and hydration. If your health care agent is not aware of your wishes about artificial nutrition and hydration (nourishment and water provided by feeding tubes), he or she will not be able to make decisions about these measures. Artificial nutrition and hydration are used in many circumstances, and are often used to continue the life of patients who are in a permanent coma.

How will my health care agent make decisions?

You can write instructions on the proxy form. Your agent must follow your oral and written instructions, as well as your moral and religious beliefs. If your agent does not know your wishes or beliefs, your agent is legally required to act in your best interest.

How will my health care agent know my wishes?

Having an open and frank discussion about your wishes with your health care agent will put him or her in a better position to serve your interests. If your agent does not know your wishes or beliefs, your agent is legally required to act in your best interest. Because this is a major responsibility for the person you appoint as your health care agent, you should have a discussion with the person about what types of treatments you would or would not want under different types of circumstances, such as:

  • whether you would want life support initiated/continued/removed if you are in a permanent coma;
  • whether you would want treatments initiated/continued/removed if you have a terminal illness;
  • whether you would want artificial nutrition and hydration initiated/withheld/continued/withdrawn and under what types of circumstances.

Can my health care agent overrule my wishes or prior treatment instructions?

No. Your agent is obligated to make decisions based on your wishes. If you clearly expressed particular wishes, or gave particular treatment instructions, your agent has a duty to follow those wishes or instructions unless he or she has a good faith basis for believing that your wishes changed or do not apply to the circumstances.

Who will pay attention to my health care agent?

All hospitals, doctors and other health care facilities are legally required to obey decisions by your agent. If a hospital objects to some treatment options (such as removing a certain treatment) they must tell you or your agent IN ADVANCE.

Medical Emergencies

New York documents will not be effective in the event of a medical emergency. Ambulance personnel are required to provide CPR unless they are given a separate order called a Nonhospital DNR Order.

You may wish to visit www.health.state.ny for more information about these forms.

What if my health care agent is not available when decisions must be made?

You can appoint an alternate agent to decide for you if your health care agent is not available or able to act when decisions must be made. Otherwise, health care providers will make treatment decisions for you that follow instructions you gave while you were still able to do so. Any instructions that you write on your Health Care Proxy form will guide health care providers under these circumstances.

What if I change my mind?

It is easy to cancel the proxy, to change the person you have chosen as your health care agent, or to change any treatment instructions you have written on your Health Care Proxy Form. Just fill out a new form. In addition, you can require that the Health Care Proxy expire on a certain date or if certain events occur. Otherwise, the Health Care Proxy will be valid indefinitely. If you choose your spouse as your health care agent and you get divorced or legally separated, the proxy is automatically cancelled. However, if you would like your former spouse to remain your agent, you may note this on your current form and date it or complete a new form naming your former spouse.

Periodic reviews are important to ensure that the documents are in accord with your wishes.

You can revoke your proxy or appoint a different one by destroying the document and/or executing a new one. You should notify your agent, doctor, lawyer, family and anyone else you gave a copy ORALLY and IN WRITING of your change or revocation. Once informed, your physician must record the revocation in your medical record and notify your Agent and any medical staff responsible for your care.

Can my health care agent be legally liable for decisions made on my behalf?

No. Your health care agent will now be liable for treatment decisions made in good faith on your behalf. Also, he or she cannot be held liable for costs of your care, just because he or she is your agent.

What about organ and tissue donation?

May I use the Health Care Proxy form to express my wishes about organ and/or tissue donation?

Yes. Use the optional organ and tissue donation section on the Health Care Proxy form and be sure to have the section witnessed by two people. You may specify that your organs and/or tissues be used for transplantation, research or educational purposes. Any limitation(s) associated with your wishes should be noted in this section of the proxy.

Failure to include your wishes and instructions on your Health Care Proxy form will not be taken to mean that you do not want to be an organ and/or tissue donor.

The power of a health care agent to make health care decisions on your behalf ends upon your death. They will be unable to make those decisions for you. Noting your wishes on your Health Care Proxy form allows you to clearly state your wishes about organ and tissue donation so that family members who will be approached about donation are aware of your wishes. However, New York Law provides a list of individuals who are authorized to consent to organ and/or tissue donation on your behalf. They are listed in order of priority: your spouse, a son or daughter 18 years of age or older, either of your parents, a brother or sister 18 years of age or older, a guardian appointed by a court prior to the donor's death, or any other legally authorized person.

How many copies should you sign?

You may execute more than one copy of the Health Care Proxy, although the New York State Department of Health has advised that copies are acceptable. Originals or photocopies should be given to your physician, your health care agent, your alternate agent, your attorney or other advisor, close family members, and or course one for yourself.

Where should I keep the proxy form after it is signed?

Give a copy to

  • your agent,
  • your doctor, and health care facility (hospice, nursing home, hospital, etc.)
  • your lawyer, and
  • any other family members or close friends you want.
  • You may consider submitting a copy to a community or online repository to ensure easy accessibility during a difficult and confusing time.
  • You can also keep a copy in your wallet or purse, or with other important papers. The Healthcare Association of New York State and the New York Chapter of the Society of Patient Representatives have developed an abbreviated wallet-size version of the Health Care Proxy that enables you to carry this with you at all times.
  • DO NOT KEEP IT IN A SAFE DEPOSIT BOX!!

Note for New York Snowbirds

Our office’s forms, taken together, are designed to meet the general needs of all states, however, each state has its own laws governing these legal instruments. You may want to speak to your doctors or an attorney in both places and execute state specific forms in any places where you spend a significant amount of time.

www.partnershipforcaring.org and state health department websites are good resources for exploring these issues.

Suggested References for Additional Information on these topics

  • New York State Department of Health website (www.health.state.ny.us/nysdoh)or Box 2000, Albany, NY 12220
  • Office of the New York Attorney General website (www.oag.state.ny.us)
  • New York Bar Association website (nysba.org) or One Elk St., Albany, NY 12207
  • Erie County website for Health Care Proxy Awareness (www.erie.gov)
  • “Fragments on the Deathwatch,” Louise Harmon, Minnesota Law review (vol.77, No. 1, Nov. 1992)
  • Choice in Dying, 200 Varick St., 10th Floor, New York, NY 10014 www.choices.org
  • “Communicating End-of-Life Wishes” by the National Hospice and Palliative Care Organization (2004), NHPCO, 1700 Diagonal Road, Suite 625, Alexandria, VA 22314 (800)658-8898 www.caringinfo.org
  • “Advance Care Planning” by Excellus Blue Cross Blue Shield Association (2002)
  • www.compassionandsupport.org
  • Partnership for Caring, Inc., 1620 Eye St., NW, Suite 202, Washington, DC 20006 (800)989-9455
  • EPEC Project, The Robert Wood Johnson Foundation (1999)
  • “Let’s Start Talking” by the National Hospice Foundation www.hospiceinfo.org
  • “Your Life Your Choices” by Pearlman, Starks, Cain, Cole, Rosengren and Patrick